waiting for a miracle

Would you want to know?

Hermansky Pudlak Syndrome (HPS) is a very rare disorder estimated to affect 1 in a million people, however as research into this area is very limited, this number is probably inaccurate. People with this condition have Oculocutaneous albinism (OCA – albinism) and in addition, have problems with blood clotting, which leads to prolonged bleeding and easy bruising. There are 9 subcategories of this rare condition. Some of them are more severe than others. One of the subcategories is extremely rare; it the worst and most severe version. It is lethal.

This severe category has other issues associated with it. One of them is onset of colitis/inflammation of the large intestine (granulomatous colitis) and kidney failure. (If you know what ulcerative colitis and Crohns is, it’s very similar and includes lots of bleeding which is hard to stop due to the clotting disorder).

There is another more severe symptom of HPS (in the rarest category) and it is to do with the lungs. People with this form of HPS develop breathing problems due to a lung disease called pulmonary fibrosis, which causes scar tissue to form in the lungs. These symptoms are expected to appear either before or during the early thirties and rapidly worsen. People with HPS do not live for more than a decade from onset of these symptoms.

I am currently trying to come to terms with the most devastating news. And it occurred to me that perhaps knowing isn’t as bad as it sounds. Would you want to know your expected timeframe that you’ll die? Would that make you live your life any differently to how you have lived it? Would you make any changes?

Well, it turns out that there is this super rare form of Albinism (technically though, albinism is a symptom but the two go hand in hand) that is terminal. There is no cure. And that means life expectancy is at best 30-40 years. When I was a kid, that would have seemed old. Now that I’m a parent and in that age group, I realise I’ve barely begun to truly live yet. Between mortgage repayments and medical bills etc, we survive. And that’s fairly normal for people in my age group to be just getting by. We haven’t yet been able to freely live like most do once you get to retirement and have hopefully paid the mortgage off or downsized to pay off debts.

Unfortunately this is the time Lorelai would be declining rapidly (if she makes it this far) and beginning the road to the end of her life. There simply is no way to gloss that up. Or to make it sound any nicer. She will die quite young. Unless somehow she can get a lung transplant.

From the reading that I’ve done on this particular form of HPS, I’m yet to find someone who has had a lung transplant and who has lived much beyond 30. Unfortunately I’m finding that more and more people with this condition develop the pulmonary fibrosis quite early. One child that I found was around 6 years old and only lived a few years longer. So it’s becoming clearer that the future for someone with HPS (this category) is an extremely short life, with an agonising death. 😭😭😭

From the first onset of symptoms, life expectancy is 10 years, as I said above. Some people with this form of HPS get symptoms in their adolescence. So therefore life expectancy is even younger. It seems that 30-40’s is a best case scenario and not the norm/to be expected.

I keep thinking how totally unfair this is. My heart longed so much for a daughter and now I’ve learned our time together will be short. And she will suffer towards the end of her very short life. I don’t understand. Why her? Why anyone? So many questions I’ll probably never get an answer to until one day when I meet our Creator in heaven.

For now all I can do is trust that He is good. His plans are good. And that He will carry my daughter and us through every day of our lives here on Earth. I can be thankful for each memory we create together. I can allow myself to grieve the injustice of this and also accept that part of life is death. We will all meet that one day. I will hope and pray that medical advancements may find a cure or that someone will develop artificial lungs so that my daughter can live a longer life. So I will find ways to get this rare condition researched. I will beg for funding into this area of research at whatever level of government that it takes. Anything to save my daughter and others like her.

I keep thinking that, what if she wants to have a family? Will she decide to have children and then leave them as young children without a mother? Or will she decide to not have children so that the children don’t have to grieve the death of a mother so young? Is that a choice anyone should have to decide between? Will she decide not to have a partner so that she doesn’t leave them grieving? But then will she be lonely because she won’t ever experience that love? Will her brothers be lost without her? Especially her twin Justin… how will he cope watching his twin sister die a slow and painful death?

I know life isn’t fair. It’s just not meant to be. I also know that each day is a gift, not a guarantee. I’ve always lived that way. But this is pretty hard to comprehend. How can this be? How can my girl be dealt such a tough hand at life? I wish I could take it all from her, that’s what we want to do as parents, but sometimes there’s absolutely nothing we can do except wait for the inevitable. I wish we were in a better position to make her life as full and as wonderful as possible.

I’ve done a bit of searching and I can’t find anyone else in Australia with this rare syndrome that is still alive. Is she the only one? It seems worldwide there’s only a handful of cases. (If you share this far and wide, I hope that someone in Aus might connect with us who is also lost like us, or a bit further along, and we can support each other’s family’s through this).

I’ve become so numb to hearing medically tough news. Between the pregnancy losses, the disabilities and medical issues with our kids and with me, I’ve become so numb. Nothing really shakes or upsets me these days. It’s just onwards and upwards and how can we fix this. Except this cannot be fixed. It’s left me so heartbroken. Not about me, for my girl. For her. For her brothers, mourning the loss of their sister at a young age.

So right now, my eyes hurt from crying, my face is puffy and tear stained, my head is spinning from all of this information to take on and the more I read the more questions I have that there aren’t answers to yet. (Also why we wanted to share this information this way, because right now it’s very hard to talk about this. Our hearts are shattered.)

We need more research to be done. My heart aches for my little girl. For the challenges she has ahead of her. I remember finding out about her OCA and wishing so much that she’d be able to see well enough to be able to drive. Now I just wish she could live long enough to have a long/full life and I wish it was ‘just’ OCA. Oh how our perspective can change so quickly.

I hope in the future maybe I can give her my lungs, maybe by then medical advancements will allow this. I’m sure in 30 years time my body will be crumbling so much. With all of my health conditions, my lungs are the things that do work. Perhaps I can give her mine? I’d give up anything for my children.

This also gives me a glimpse into the heart of Jesus. He gave up His life so that we could live. Gives that totally new meaning. I’d do anything to help my children live, and God did exactly that for His children when Jesus died on the cross. All my life I’ve never been able to truly understand how anyone could do this. But now I think I might have a bit more insight (I’m not claiming to be like Jesus, I’ve got a LOT to work on, but I can finally understand why He wanted to do that and did do it).

14th August 2020, Friday afternoon just after 3pm will forever be the day our daughter was stamped with her timeline. The only known in life is that there’s a birth date and there’s a death date. What happens in between is the unknown. We will make the most that we possibly can during her life. We will do our best to make the management of her condition something that doesn’t make her who she is but she instead makes the condition part of her lifestyle. We will make sure her educators understand how to help her so that she doesn’t have to worry. So that when she gets cut, her bleeding can be managed.

Any surgeries she may have when she’s older will need to be done under even more specialist care to manage her bleeding. She needs a haematologist at any of these types of medical procedures. She will need platelets so that she doesn’t bleed out. And she will most likely need a blood transfusion at some point in her lifetime.

And the number of specialists that we need for her now is upwards of 10. That’s more appointments and more $$. It’s hard to explain this to someone who doesn’t have a child with a disability. When you have a child with a disability/medical condition, or multiple, you have no time. Zero. You have so many appointments. From specialist medical appointments, to allied health appointments (like occupational therapy, physiotherapy and a speech pathologist). There are so many appointments. It’s not like a regular family where you have so many extracurricular activities (because we have those too). This is in addition to all of that.

Now that’s a lot of appointments and scheduling for one child. Make that 2 children and it’s extremely hard. It’s exhausting. Some days we attend up to 4 appointments. It’s hard on the kids too. And Justin, although mostly okay, has also needed paediatrician, speech, OT and physio alongside his sister.

Yes this is part of parenting. But it’s not the norm. Your circle of friends reduces when you have a child or children just because of how much time is needed for the kids. Add in the disability side of things and that circle narrows more. So much more. I was talking to a dear friend who also has a daughter with significant disabilities. I feel like she’s one of the few people who understand because she’s living it. Every. Single. Day.

So that circle of friends that you actually need so much more when you’re struggling to juggle everything and all of the additional stuff doesn’t exist. Is it because it’s too hard for friends to be friends with those who have significant responsibilities with their children? I don’t know. So with this new, significant diagnosis, I fear the loss of friendships as others drift in the non-disability life.

We will do the best that we can to look after her medically – people with colitis shouldn’t be taking ibuprofen (unless absolutely required) so now that we know this early, we won’t give this to her. We will have to make sure her doctors are all aware of this. I have ulcerative colitis and crohns. Doctors know this and I’ve still often been told to take ibuprofen and I’ve had to speak up to remind them I’m not meant to take this – so we are already on the ball with this.

The risk of kidney failure is also there. So we will do whatever we can to learn more to prevent this if we are able to in any way. She may also need a kidney transplant or both.

We have to keep her lungs super healthy to give her the best chance of delaying the pulmonary fibrosis onset. That means if someone is sick and wants to visit, or does visit, we will be those people that will have to turn them away even at the door to protect our little girl’s lungs. It means we will have to strip down and shower to remove germs after returning home from work. It means daycare and schooling for her will be crucial in having her kept away from anyone who is sick. That’s so hard on its own. It might mean a lot of time off school and perhaps even home schooling. But how do we do this and make ends meet? It means with Covid, none of us can at all afford to bring it home here to her or there is a very huge chance her lifespan will be cut much shorter.

We will get involved in any trials and fundraising that we can to try help find a cure for the pulmonary fibrosis (lung failure) side of things. This is the biggest one. This is the one that will end her life. So any research into this area might one day help save her life. There’s hardly any research into this area currently that I can find but we will do whatever we can. (Anyone know any researchers or big companies wanting to fund research?!)

Each time we think we’ve come to terms with on of our kids’ diagnoses/or whatever big has happened, then we feel like we are hit again with something big, like this.

I know we will smile and laugh again. I know that in time we will find our way forward. But right now in this very moment, I see the obstacles in the way. I know we will find peace, but right now I see the waves of uncertainty. One day we will build a purpose built home for our kids to meet their needs and disabilities, but right now we have bills piling up and I can’t see that dream coming to light. When the dark clouds clear, and we can climb out on the other side, we will pick ourselves up and move forwards with an absolute fire in our hearts and determination to do everything we can for our kids , especially Lorelai with this new information. But for now. It’s okay to not be okay. We’re not okay right now. And that’s okay. We are in the middle of this heartbreaking grief. This compounding grief from the raw loss of Scott’s mother just a few weeks ago. Just when we thought things couldn’t get worse, they did. But we know God is a God of Hope and we will one day be lending a hand, a listening ear or a shoulder to cry on to someone else in this same diagnosis. But hopefully by then there will be more research into this very rare disorder and a cure. Please God – make there be a cure for our daughter.

And if you’ve made it this far. Please, please, please think about becoming an organ donor. Tell your family. When your time comes, you could be the cure or hope someone else has been praying for their entire life. Organ donation allows you to live on and give the gift of life long after you need your organs. If our little girl’s prognosis can inspire just one person out there to donate their organs, then other families won’t have to face the heartache that we know is inevitable at this stage.

6 Comments »

Release

Flashbacks. They come every time I go to the toilet. I have to mentally prepare myself and force myself to think positive, yet remain realistic and prepared.

Flashbacks are an interesting thing. They aim to bring us down. They steal our mental health state. They bring us to the worst case scenario. And I don’t just mean in this scenario, but of course they are a challenge now too.

Flashbacks of teen years. Flashbacks of people who should have been more responsible and not so predatory. I know many people who fight these types of flashbacks every day. They are fighters and stronger than they realise.

I went to church on Sunday. Something we’ve been trying to do. We have two home churches now. One that we were going to regularly before the craziness of life. Life got in the way in a big way. And we tried so hard to keep going regularly but then sicknesses came and just every week it was something else. Because the church is a 45 minute drive, it’s not something we can just pop in to. Perhaps we gave up trying after a while. Our faith in Jesus never left us. And we get defeated by our own crazy lives.

So lately we’ve found our second home church. When we can we will still visit our first home church. The one we’ve been going to is a 7 minute walk or a 2 minute drive. With me being as restful as possible while still being a working mum, we take the driving option. But we’ve been going regularly. And we aim to keep this up. And we’ve found people who we connect with too. Which is awesome.

Anyway on Sunday we were standing there. Singing the most wonderful worship song. It was as if my heart had written the lyrics. I struggled to hold back the tears to be honest. The song talked about letting go of my fears and laying them at His feet. In that moment I realised something pretty significant and life changing. I had been walking by faith and had been praying and telling God how terrified I am etc. It never dawned on me that I should give that fear to God.

So I stood there singing this song and decided in that moment that I will now give that fear over to God. And each day I make a conscious effort to do that.

It’s a lot easier when I’m having a clear time but it’s still scary. I’m giving that fear away every time *before* I use the loo or do the undie check. And what a difference it’s had on my perspective.

I needed to hit rock bottom with my fear. And I did. I hit the absolute bottom of the valley and felt like I was in the darkest of places for a while there. And I hope I don’t go back there. I feel like I’m slowly coming out of the valley.

That’s the thing right. With faith. We have no promise that our lives will be perfect. In fact we are told quite the opposite. BUT God is there with us. Teaching us and guiding us. I’ve learned so much in the last 14 and a bit weeks. More than I could have expected. I’ve gained friendships I never thought were coming. And I hope that I’ve been able to provide insight for some, and comfort to those who have been or who are in the same position.

So for now I’m feeling okay. I’m still terrified of the return of blood. But I’m now giving that fear to God. What a weight off of my shoulders. I only have to carry that fear until I remember to give it back. I don’t need to own it or be burdened by it.

The person who wrote that song, when they wrote it, I have no idea what or who they were thinking of when they wrote it. But it has been used to release so much anxiety that was crippling me. We never know how our actions or how what we share will impact another’s life. We could bring release and healing, or we can bring that crippling fear. Sometimes your words are the answers to someone’s prayers or problems. Sometimes God uses you to speak to someone else. And that’s exactly how God used this song for me.

So if anyone else is going through something absolutely terrifying. That extreme life or death fear. Crippling. You don’t know how things will turn out. Your anxiety is weighing you down. Or even if you just have a tiny fear about something. Give it to God. Literally take it into your hands and hand it to God. He can carry it for you so that you can be free. Jesus came to heal and bring freedom. Allow Him to opportunity to release you from your chains of crippling fear.

1 Comment »

Crossroads

I don’t know if I should be ridiculously excited or preparing to grieve. We’ve waited so long to build a family. It was such a long, long and full on journey to be blessed with our incredible boy just over two years ago. I was scared to try again. Scared of the rollercoaster ride of losing babies. Scared of the not falling pregnant. Scared of falling in love with babies only to say goodbye to them in a few weeks.

This time around happened so easily (in comparison to our road to having him). And things just progressed so well. Better than we could have hoped or dreamed of. Until 7 weeks.

I had some spotting when I went to the toilet. I still remember the loud pounding of my heart in my ears. Deafening pounding. Like drums banging in each ear. My heart thumping out of my chest. And my hands trembling. I’ve seen this too many times before. It was always the start of the end. And of course in the middle of the night.

I went to work the next day. Worrying that this was about to be over so soon. I called my obstetrician and they said not to worry as it’s probably implantation blood. I still went in to see them and all was fine. Praise God!

The spotting continued from 7-9 weeks. Then finally some clear wiping. And by around 11 weeks I felt myself becoming excited. Two weeks without spotting meant I was gradually fearing the toilet less and less. That fear of wiping and seeing spotting or blood. I almost stopped checking, but not quite.

Then 12 weeks came. Our nuchal scan was perfect. Low risk bloods. We couldn’t be happier.

And then it happened again. More bleeding and with it brought darker bleeding this time. And some clots. That pounding in the ears returned. And the uncontrollable body shaking. A rush to be checked out in the middle of the night left us with more questions than answers. The hospital was understaffed (terribly!!) and didn’t do an ultrasound. The hcg reading was lower than my last one. I could be miscarrying or this could be normal as the levels drop at around 12 weeks.

The bleeding continued the next morning. So after only an hours sleep we went to a different hospital. They did an ultrasound and found the heartbeat. Praise God. No guarantees yet but there was hope. I could sleep for a bit.

We saw our obstetrician again and growth seemed okay and no reason for the bleed. I went to spotting for a few days. And then clear for a few. I began to relax again and began to feel excited again. Things just might be okay.

And then 14 weeks came. More bleeding. Heavier this time. More mucus clots. I tried to continue with work but it was all too much. My obstetrician booked me in urgently for a scan. No reason for the bleeds and growth all on track. But a cervix length that’s slowly shortening. No other reason for the bleeds. (Lots of time spent on dr google during every single bleed. What can I do to stop them? What is the cause? So many searches. So many medical journal articles read.)

Finally the bleeds returned to pink. This used to be a scary colour but now it’s a colour I am grateful for instead of red. And then clear for a few toilet trips. My mood lifted. Thinking things were maybe improving. And then more came again. I felt crushed

So I go back to the start, I’m not sure if I should be excited or preparing to grieve. I love the miracle of pregnancy. The growing and total mind blowing transformation that takes place from a teeny tiny blob on the screen with a flicker to a baby that swallows. My 14 weeker has already been loved so incredibly much. And I’m terrified. Absolutely terrified of looking at the remains as I say goodbye. Of feeling them fall out of me on one toilet trip or as I walk around. Yes, this part of pregnancy isn’t really talked about. The love story goes that you fall in love, get pregnant and have a baby. No one talks about this in between stuff.

I’m glad the taboo about miscarriage is beginning to go away. But what about this part where you’re waiting. Desperate to celebrate the miracle. Desperate to do anything to keep the miracle alive. Yet completely helpless.

And taking my mind off of this is like asking someone to survive a day without breathing. When you’re feeling wet liquid drip out between your legs as you sit, walk, move, and you’re wondering if it’s going to be blood, pink or clear, or your baby passing, you literally cannot stop thinking about it even for a second.

I praise God so much for this miracle and blessing beyond my wildest dreams. And each day I get to spend being pregnant is a gift, not a guarantee, that I’m forever thankful for. I don’t believe God ever takes babies away. The enemy does but God is still there with us. (I literally couldn’t get through this incredibly stressful, depressing and also what would otherwise be an exciting time without Him.) I wonder why in some cases He intervenes and in others He doesn’t (or in our earthly eyes it appears that way). But that’s not my place to know these answers here on Earth.

Right now I hope and pray that He intervenes in our situation. That He stops this bleeding and subsequently spotting and repeat, so that I can have clear. So that I can celebrate this miracle. This is our last chance at completing our family and I so desperately want a sibling for our miracle boy. I had wanted siblings but I don’t think I can experience pregnancy again. The mental torture is really taking a toll on me.

So how do I process this? I don’t know. But I have been praying so much. And every now and then I get a clear toilet trip and I can honestly cry tears of happiness, relief and joy when I see clear.

The pink now isn’t anywhere near as scary as the red. Can someone invent a way for people in this situation to sleep until their babies are born healthy? The second by second, minute by minute, hour by hour, day by day psychological torture is depressing to say the least. It steals joy, hope and peace.

The future plans of excitement are on hold. As we wait. And pray. And pray. And then pray some more. The tears don’t fall as much as I feel too numb. This place of in between is a place of both hope and despair. Of joy and sorrow.

I don’t know what the outcome will be. Will it be my hopes, dreams and ultimately my plans? Or will it be different? I don’t know how I will get through this if it’s the grief I never want to experience again. But I know that no matter what, God’s with us on this journey and He’s making diamonds out of us.

Maybe I’ll be that person who can give comfort to another mum in my position one day. I certainly hope so. I’ve seen so many women go on to have healthy babies even with severe bleeding. But I’ve also seen the opposite and that’s been my only personal experience.

This is by far the hardest pregnancy I’ve been through. Yes we lost so many babies. And we lost them before the 12 weeks. And yes it was hard but we got through it. This pregnancy we are so much further. We’ve seen those kicks on the screen, those tiny fingers scratching the head, the heart beating beautifully. We already love our son or daughter. We already have hopes and dreams for our family. I pray so hard that they become a reality in July. That this horrible dribble that is seeping out of me constantly stops.

This fear of going to the toilet. I tremble. My heart sinks. I check as I pee. I shake. I worry. And then I’m so scared to wipe too. Even now, I need the toilet but I’m dreading it. I’m too scared to go. My ears are beating the sounds of drums from my thumping heart. I’m terrified. I want someone else to do it for me but this is the path I must walk every single day and night. Every time I go to the toilet, I’m begging and pleading “please God, please God, please no blood!” I used to beg for it to be clear. Now I’m relieved when it’s just pink. And then I’m saying “Thank you thank you thank you God!!!” I’m mentally exhausted.

I almost forgot the photos. I’m embarrassed for anyone to see photos in my camera roll without my control. My camera roll has so many photos to show the obstetrician each time what it’s like. They look, zoom in, analyse. At first it was to show my husband. Then the hospital but now I realise they don’t do anything until 24 weeks so there’s really no help there either. And that early pregnancy unit for those at risk of miscarriage takes a few weeks to get in to see and by that stage it’s probably too late anyway. This area needs a lot more funding. If you’re alive, that means you’ve been carried by a mother, so please support health services for pregnancy especially high risk ones.

If you’ve been blessed with a uncomplicated pregnancy, please appreciate it. So many others have had or are having pregnancies like mine. And it isn’t fun. It’s shattering in the almost worst way.

I know I speak for so many other women with this post. Many will think it’s an over share – I hope you have learned a lot anyway. I started my blogging to stop the taboo about subjects like this. I’ve spent countless hours, long into the early hours of the morning searching for hope. For information. And I can’t find one blog about this. Not one. The research studies are few and far between too. And when you’re feeling as vulnerable as I am, you’re looking for someone who has gone before you. You’re looking for what they did and how it turned out for them. You’re looking for solidarity. You’re looking to not feel so alone every single day because you know you’re absolutely not the first pregnant person to be facing this terrifying situation. It’s really lonely when you don’t find much.

We’ve received so many beautiful messages of congratulations and yet I now can’t even read them because I’m so scared. Should I be preparing myself so I can support others if this doesn’t go to plan? So I can break the news gently? Or should I be excited because everything is going to be okay?

I’ve got a lot of positives on my side. And I try to focus on each of those. Yet when that trickle starts randomly in the day, my heart sinks deeper than the titanic. And then when I get a light pink to clear wipe, I want to celebrate and tell everybody “it’s clear (or pink) and everything’s okay!!!” I feel on top of the world again.

When people ask me how I’m going, I feel torn. Do I do the socially appropriate thing and say “great thanks, we are so excited?!” Or do I be real and say “actually I’m not sure. I’m waiting and bleeding. Things might be okay or they might not be?”

Do I buy maternity clothes for my growing belly that no longer fits any of the pants in my wardrobe? Or do

I wait and keep wearing the uncomfortable stuff because I don’t want to waste the limited money on something I’ll possibly never wear?

Yeah, okay I know I’m usually pretty positive and this post is quite depressing. That’s a reflection of where I’m at and I think it’s important to share this so that if you have a friend who tells you they are bleeding or spotting, you might be able to tell them that yes, it’s terrifying, you might be able to sit with them as they cry and hug them. Or ask them if they’d prefer to not talk about it? Or you could ask them if they want to talk about it. Maybe they are desperate to tell someone who will truly listen.

I’ve had some absolutely wonderful support from strong women who have traveled a similar journey to me. They get it. And what a relief it’s been talking to them. To let my guard down and honestly talk about how terrified I am. And they relate. They get it. They get the undie check multiple times a day and the toilet wipe and pee check. They reassure me that no matter what I’ll get through this and they are there for me. They are searching for things to help, they are finding other possible reasons. It helps to know I’m not alone and I have a few friends I can go to who truly get it.

I hope this post helps to equip you to help another person in my position.

And if you’re willing, please pray that this pregnancy continues to be a healthy one with healthy results and no more bleeds. I’m so desperate to enjoy this last pregnancy. To not be grieving this. To instead enjoy these movements I’ve been feeling since 9 weeks and 4 days. To celebrate extending our family from an only (very much loved) child. Thank you.

6 Comments »

Another Miracle due in July 2019

Scott and I, along with Jeremiah, Zazu and Sophie have some exciting news. We’re adding to our family!

Before you ask, we’ve already got some answers below:

1- was if Ivf? We have kept things close this time and would prefer not to answer this question at this time. Please respect our wishes. Guess if you want, you’ve got a 50% chance either way, but we won’t be answering just yet.

2 – will you find out the gender? Probably not. We’d like a ‘normal’ pregnancy. Everything is so clinical with pregnancy so we’d like to keep an element of surprise. So you will probably hear us referring to the miracle in my belly as he, she, they, them. It’s kind of fun having no medical idea what gender we’ve got in there.

3 – how many weeks are you? 12 weeks, and no we don’t believe in that stupid 12 week rule. We would have announced earlier but we needed to do some things first.

4 – how am I feeling? Rotten. Haha. I’ve had terrible morning sickness but worse than that – I’ve been in a bad Crohns flare for the last 12 weeks. (Think terrible stomach pains, stuck in bed then stuck on the loo, then running to the loo not sure if you’ll make it, lots and lots of blood loss, yeah it ain’t pretty.) I’ve lost a lot of blood and 4kgs. I’ve been in hospital having some unpleasant procedures. I’m on so much daily medication and it’s not all just a simple pill to swallow. Most of it is really intrusive and time consuming. Scott has been keeping this family together. I’ve been on a lot of bed rest and he’s been cooking, cleaning, looking after Jeremiah, trying to sort the house, trying to kept the gardens maintained to avoid snakes, looking after me, looking after the dogs etc. Things that we’d normally share some of the load, he’s been doing it all as best that he can.

5 – How’s the baby? So far everything is going well but we are cautiously optimistic. I’ve had some spotting earlier and that’s absolutely terrifying. That’s never ended well for us so we are still quite scared. Gods in control and guiding us so we trust Him.

6 – How’s your back going to hold up? I have no idea. All I can do is try my best. We can’t foresee the future and adding to our family is so important to all of us. I have early onset osteoporosis so if I don’t have a baby now, we will probably never be able to have one again. Check your bones ladies – there’s this thing about pregnancy and breastfeeding. It does all sorts of things to your bones. I developed osteoporosis from pregnancy and breastfeeding last time. If you’ve had a fracture, please get a bone density test done.

7 – I probably won’t talk about the pregnancy in person. It makes me feel awkward. When you’ve had more losses than you’ve had success, pregnancy is the scariest thing in the world. Every trip to the loo I’m checking for clear or blood. The entire pregnancy last time was scary and this one is even more scary with all of my serious health issues. So you probably won’t hear me talk about it. Scott will. It’s different when it’s not happening to your body. Maybe one day I’ll say the P word (pregnant) without such a struggle. And I reiterated I’m feeling so crap. So if I’m talking to you, I’m also probably trying not to throw up on you.

8 – Our main problem has always been carrying a baby to term. The getting pregnant part is the easier part. It’s the staying pregnant part that is scary. If you’d be willing, we’d appreciate any prayers for a safe and healthy pregnancy to term.

9 – when are you due? July 31st but we all know babies come when they are ready so who knows? Late July sometime.

10 – working with a toddler and dogs to get a photo isn’t easy. Haha. Hope you get a giggle out of our “best of” photos with our boy and our girls.

We’d like to give you some insight into our lives and why we felt the need to share those questions and answers above.

We never dreamed that it would take us 7 years and 6 miscarriages (babies we’d already grown to love, plans we’d made for them) to finally get our boy Jeremiah. No one dreams of heartache and intrusive, often painful daily medical procedures to get pregnant. It’s not the fairytale to have a baby.

We decided to share openly about the processes involved to bring awareness. (If you’ve got Netflix, check out Friends From College – the ivf scenes. The only show I’ve ever seen to do justice to ivf. I had tears watching it.) We were very open about everything so that others could understand *some* of the ups and downs of ivf. We also shared for others going through the process.

Anyone we’ve told about this pregnancy, the first thing they say is “was it ivf?” It’s an intrusive question and even though we hold you all dearly and we know the intentions are from a place of genuine interest, if we wanted to talk about conception, we would. Think, would you ask this question to any other pregnant friends? If the answer’s no, then please hold on to that question – we might just answer it in the coming months but for now, we want some normalcy. We’d love to know what a ‘normal’ pregnancy is like. (If that’s been you who has asked “was it Ivf?” – this has been interesting for us. There’s only been one or two people who haven’t asked this. So you don’t need to apologise or be offended, just take on our perspective and perhaps another couple won’t be asked this by literally every one of their close friends. Let’s celebrate a baby like you would any other.)

We’d like to end this with a huge THANK YOU for not asking those questions. You know the ones I’ve mentioned on our very first ever blog post. The ones about when are we having another or if we are going to have another. Thank you. Sincerely thank you for listening to the heart of couples (and singles) trying (or not trying) to have a baby. I’ve been so incredibly grateful and impressed that not one person has asked those questions. Thank you! Clearly we wanted another and we didn’t have to dodge those questions or think up witty responses. Thank you!

And lastly, but most importantly, praise to God for this precious miracle, and for bringing us this far. There have been some scares and hospital visits but through the grace of God, He has stood beside us, gone before us and carried us when needed. Through Him, all things work together for good. He knows the plans and purpose for our lives, and He listens when we simply call upon Him. (Jeremiah 29 v11-14 brings us renewed hope daily.)

🙂

Leave a comment »

Our biggest hero

So this post is a bit hard to write. We have had so many complications since Jeremiah’s surgery. We know God is looking out for our little miracle throughout all of this. We are so grateful for all of your prayers and messages. We haven’t been able to respond to many messages simply due to the craziness that has become our lives for now.

We have had a bit of time to process and feel more ready to share. We were reluctant to share too many details about our son’s personal life as he hasn’t got the chance to be able to agree or disagree and we are always conscious about the future for him. He will grow into an older child, teenager and adult who will have a digital imprint. So we don’t want to embarrass him in any way.

As we have come to terms with everything (after so many tears and for me, crying myself to sleep with this heartache for my baby boy and his pain) we have decided that we will raise our son to embrace his abilities just as much as his disabilities. So hopefully what we share now will be a platform to bring awareness to the following conditions/complications and also provide details for specific prayers for healing.

And we also hope that the following will also raise awareness about Spina Bifida, including the severity and complications that many children and adults have to deal with. Perhaps this awareness will encourage others to speak out and pave the way so that others going through this will have someone/somewhere to look to for information, clarification and guidance in a very (at times) dark and unfamiliar territory which at times can almost break you as a person. If we can at least provide one family out there with some hope (I know God will give this as He works through our son), some reference point and somewhere to look for what they might expect (like our ivf journey has provided to many) then I know that sharing the following will be a blessing to others and will also pave the way to normalise what many people go through on a daily basis.

Following surgery Jeremiah has currently lost the use of his bladder and bowel. We are hoping and praying that by some sheer miracle that this can heal. There isn’t a huge chance but with God we know anything is possible. He needs regular catheters to empty his bladder and these are so traumatic for him. He cries until he often vomits. We had hoped to avoid this by doing the surgery but it was almost inevitable if we didn’t do the surgery. Please pray for healing. Scott is doing regular catheters. This has totally changed our lives as we know it. We can’t send Jeremiah to daycare like this just yet and that may mean Scott deferring uni which also means he will become Jeremiah’s carer and that means he can’t get a job to help pay the bills (BUT Jeremiah is our number one priority so he is worth everything and more). We just want our little boy to be free from these complications. We pray each nappy for some wee in the nappy. And we pray for poo too. The things we took for granted before and now we are so desperately praying for full nappies.

Jeremiah had started walking and climbing and being the happy kid we know but over the weekend he took a turn for the worse. He couldn’t keep anything down. He had multiple vomits and then stopped trying to eat or drink.

On Friday night he had a cannula put in. It took a doctor 3 attempts (after we said that only an anaesthetist has been able to get one in). He finally gave up and called an anaesthetist to come and put one in. Then first go it went in. Jeremiah had fluids and antibiotics and by Saturday morning seemed a lot better. Walking around and playing with his bestie.

Unfortunately the cannula stopped working and had to be taken out. By Sunday morning and after many vomits Jeremiah became lethargic. He couldn’t keep anything in at all. An anaesthetist was called at 11.30am. We waited all day for someone. But they were too busy. By the evening a doctor finally came. He wanted to put a line in through Jeremiah’s nose to his stomach. We politely declined because this wouldn’t solve the problem of Jeremiah vomiting the fluids back up. The doctor seemed to then disregard us and did not page an anaesthetist. We requested many times overnight but still waited. When the day shift staff arrived (who had paged the day before for a cannula from anaesthetist) were not impressed that our son was so dehydrated and still not eating and throwing up all liquid.

Jeremiah went for a ct scan to find out what’s going on. He has a small bleed in his brain and his brain has shifted a bit post surgery. This is a wait and watch and hope and pray. It’s in a position where they can’t operate to remove it. This may be causing the vomiting. As he moves his brain goes a bit wobbly and he vomits.

He has spinal fluid leakage down near the wound. He is on bed rest (currently that’s okay because he’s so sick and lethargic but this will be so tricky as he becomes his usual self again). If the bed rest doesn’t fix the leakage, then he will have to go for another urgent operation to fix this.

He has lost the ability to walk over the last 36 hours. This could be due to dehydration or a number of things. We are praying he starts to walk again when he’s allowed to be up.

The fevers are still here. He has a virus on top of everything which he has caught since coming to hospital.

Jeremiah has lost 400g over the last 7 days. Not surprising as he can’t keep anything down.

Back to the cannula. He finally got one in at 3.50pm yesterday (Monday). He waited for 28 hours and 20 minutes to get fluid. Not good enough care for a one year old especially post surgery. The nurses tried their best though.

So in summary Jeremiah has:

⁃ A small bleed in the brain

⁃ Spinal fluid leakage

⁃ A virus

⁃ Loss of bladder and bowels requiring multiple catheters a day

⁃ Unable to keep food down due to the fluid in the brain

⁃ Loss of walking again

⁃ Lethargic

⁃ In pain (probably headaches)

⁃ Low pressure in the brain causing him to throw up anything he eats or drinks

We love our son more each day. Nothing could make us love him any less. To us he is absolutely perfect. With or without any of the complications above, he is going to fulfil his potential. We will help him embrace everything that comes his way throughout life. We’ve learnt so much about Spina Bifida in the last two weeks but especially this last week. We’ve had many tears and worries for our son. But we keep reminding ourselves of the reason we named him Jeremiah (Jeremiah 29 v 11-14 in the Bible). So we place our full faith and trust in God. He’s got the power to take all of this from our son and give him complete healing, or we know He will use this to bring glory to Him anyway.

We so appreciate all of the prayers. Jeremiah just wants his Mumma so there is very limited down time for me to be on social media much at all but we are reading all of your messages of support. Thank you so much. Scott has been the “go to” person because he doesn’t have a clingy koala (Jeremiah) attached to him for what feels like 24/7 (I’m not complaining, the cuddles are great but I wish he wasn’t feeling so scared that he needs to cling to me for dear life and out of fear of what will happen to him next.) So my ability to read/respond etc has been so short. And in the short times I’ve had a chance to sit, then a nurse or doctor walks in or Jeremiah vomits all over me or something. Or I try to eat. Eating is so hard to do as I just don’t seem to get a long enough chance.

We really appreciate all of the support and prayers. We know that everyone will get behind our boy with a lifetime of support as he learns to embrace his condition and not be limited by it. We also know that with his cheeky sense of humour he will good around one day and won’t allow anyone the opportunity to laugh at it bully him. Kids can be so cruel, but kids can also be so incredibly kind, caring, compassionate and resilient when they have this behaviour modelled for them. So as he grows older, he will be surrounded by supportive friends, families and educators. We will ensure this for our boy.

Thank you again so much for your prayers and we ask for you to continue to pray for complete healing for or boy, for our boy to be able to accept and embrace what lies ahead of him and for us to be the best parents that we can be for our boy. xxx

1 Comment »

Thank You

You may have noticed that over the last 12 months we’ve been a bit quiet on the blog side of things. We have managed to just keep up with posting the weekly photos (albeit some late) but the blogs haven’t been coming. There have been so many posts I’ve written in my head to share with new and expectant mothers and fathers, but I just haven’t had the time to sit down and put these in writing. It’s funny how what we imagine motherhood to be and the reality are very different things. In a good way. I had always imagined that I would have a baby and then toddler who would sleep well. Have day sleeps and in these times I would get all of the housework and anything else done (yes, I can almost hear you laughing and falling off your chair as the laughter tears roll down your face – it’s okay, I will be doing that one day at myself once I’ve had some sleep – so when I’m 80). I thought I would even have a nap here or there myself when he would nap. Reality is different for every parent and for every child. Our reality has been a baby and toddler that doesn’t sleep much. He wakes all through the night every 55 minutes to 2 hours. And day sleeps we were lucky if we got 30-40 minutes out of him once, and extremely lucky if that happened twice. So the time to sit and put thoughts down have been very minimal. Those precious nap times were spent getting bottles sterilised and the bare essentials done. Oh, and don’t even get me started on pumping – I’ll save that for another post when I eventually get there.

img_9909

Jeremiah as he went under for the MRI (they did this in my arms first then we moved him to the bed).

So that explains why we haven’t shared as much as we would have liked to. And with that as a background for the compounded sleep deprivation, that may explain why we just haven’t been able to find the words we really wanted to say thank you for what has just been going on over the last few days. Let me attempt to now – with my still very sleep deprived and now mental overloaded brain (from the stress of the situation for my baby) express our heartfelt thanks.

First let’s just quickly go back a little while. I shared this the other day on our social media page:

I’ve learned a couple of things over the last few days. One of them is always trust your instincts and if you don’t find a medical professional who is willing to run some tests, then keep trying until you find one that will.

I’ve learned that God brings people together for reasons. At Hillsong conference last year Jeremiah was in the middle of being chronically sick. We hadn’t found a doctor who really looked at him. We happened to have a lady on our door as a group concierge who is a paediatric nurse. She asked me if I had taken Jeremiah to be seen by a doctor. We got into a few great conversations and she gave me the name of a paediatrician that she had worked with and she said I should try her. This nurse reconfirmed to me that there were red flags (the rattle in his chest that each doctor said is ‘normal,’ the snoring) and my boy needed to be seen.

Fast forward 5 months and I finally got a doctor who wrote a paediatrician referral even though it “probably wasn’t needed,” but I still insisted. And when I called up the next afternoon for an appointment the paediatrician was booked out until February but they had just had a cancellation for the following day which we jumped on.

The paediatrician was lovely. She listened to my/our concerns and she looked at our boy. She observed him. And she decided to do an MRI to rule out anything major. She got us on the emergency list for the following week.

On the 2nd January we got the call to bring in Jeremiah the next day, my birthday. As he was on the emergency list there was no guarantee that his appointment time would stay and there was a chance we could have him fasting all day only to be bumped to the next day. I asked for prayers for this not to happen. That was my initial worry. Unfortunately at 3pm we had been bumped a few times already and our boy was starving. He had no idea why we weren’t feeding him and it was getting harder to distract him enough.

At 3pm we were told that unfortunately there were too many emergencies and we had been bumped to the following day. My first concern was to hurry up and get some milk into him. So before we could do anything I was feeding Jeremiah and he gulped it all down.

The hospital was lovely and let us stay overnight so we didn’t have to do the 3 hour return trip again. And we were first on the priority list for the morning. Jeremiah ate so much for the rest of the afternoon.

The next day, the 4th January Jeremiah was doing such a great job fasting and was still mostly happy, even though he kept signing “more” and tugging at my shirt. They took him in at 10.30am just as he was dancing to the wiggles. He went under so fast and then we could have a quick bite to eat ourselves.

When they brought him up to recovery he was already wide eyed and being carried by a nurse. That’s our kid – even a general anaesthetic didn’t knock him out long.

So getting back to trusting your instincts. I wish mine were off but they were on, and I think my years of early education study have paid off. The MRI picked up some abnormalities.

The first is a lipoma (I think that’s what they called it) which is a fatty lump at the bottom of his spine and where it is located they call it a tethered cord because it’s attached to his spinal cord. Thankfully with this early diagnosis there are some great solutions. He is down to have urgent surgery on his spine to remove this. Without the surgery he would eventually lose the use of his legs, ability to control his bladder and bowels and a range of their things. It’s part of the spina bifida family of neuroscience. Praise God I took all of that folinic acid before and during pregnancy otherwise this would have been much worse.

The surgery is classed as urgent and as such the spinabifida team along with the neurological team are discussing the surgery happening in the next two weeks, possibly three weeks. First we have to get two diagnostic tests done. And then there’s the rehab etc after the surgery.

That’s as much as we know really for now. It’s a waiting for when this surgery will take place.

They also picked up additional fluid on the brain. Many people outgrow this as the body grows but it will be monitored by regular MRIs over the coming months and then years. The intervention for this is pretty invasive and serious so we really hope that he just grows well and develops well without needing any surgery for this.

And once this all settles down he will need to have his tonsils out. And then perhaps he will start sleeping better, or at least longer than 1.5-2 hours stints.

I’m so grateful that we met that nurse at the Hillsong conference. If we hadn’t then I wouldn’t have been referred to this particular paediatrician and perhaps this would not be picked up for even years (the neurosurgeon and the spinabifida team were really surprised that we had initiated the pick up which led to the findings). And I’m so thankful to his amazing daycare teacher (I call her his daycare mum) because she had also noticed what I had and that gave me the confidence to pursue further medical testing in the face of feeling like a parent that was being over concerned. Trust your instincts. This could have just saved Jeremiah ending up wheelchair bound.

Thanks for your thoughts and prayers for our little boy to be seen for the MRI so he didn’t have to keep fasting longer than needed. We request now your prayers for the impending surgery to happen asap and for it to be a great success without any complications, and for his recovery and rehab to go amazingly well afterwards.

Oh and one more thing I’ve learned. Plan for the unexpected. When we came in for the MRI it was meant to be that day and then come home. And there we were still in the hospital 3 days later. I packed extra clothes in case there was any reactions to the anaesthetic and we had to stay in overnight. And then I packed enough for one more night just in case. Well I’m so glad we did. Today we’ve run out of clean clothes etc. I’m just glad I took enough for Jeremiah. Although today he used up the last of his outfits playing outside so we are down to borrowed hospital singlets and I’m so thankful for those. Always pack more than you need.

There will be a tough/challenging few months ahead of us all, and then ongoing assessments right into adulthood for Jeremiah, but we know God is bigger than this and He’s got this. Jeremiah 29v11-14 reminds us all the time that God’s got this, and He hears our prayers and your prayers xxx

(Sharing it here for everyone who has followed Jeremiah’s journey right from before he was a teeny tiny embryo and also so that we can update our friends and family easier – as you can imagine we are a bit overwhelmed at the moment so can’t possibly update each of our friends and family as much as we’d like to)

For anyone new reading this post, that gives you a bit of a background to this blog. And before I go further, I’ve had many messages asking what were the signs that I had picked up. There were many tiny ones, but the ones that stood out to me most were that Jeremiah would have a left wobble. His left leg would lag a bit and often cause him to trip over many times a day. And the other thing was that he would often be standing and just fall. The team at the hospital said that this could be the nerves in his legs losing the message from the brain and then they stop working so he falls. None of it was stand out to anyone else, but my gut was telling me this wasn’t normal. And then along with his larger head I was worried.

We hadn’t planned on sharing about his MRI that he was going to have. But God had other plans. I didn’t want to worry anyone unnecessarily and I also didn’t want to make a big deal out of it. But the thing that prompted me to share about his MRI initially was that there was a chance that we could be bumped off the list after fasting all day to have to wait for the next day – we were on an emergency list for the MRI. So I had put up a post on my private page asking friends to pray that Jeremiah didn’t have to fast for long. I guess that sparked a bit of worry as we were then inundated with messages asking what was wrong with Jeremiah. We didn’t want to scare anyone and just wanted to wait for the results once it eventually happened.

img_9942

Happy to be eating after the MRI

As we posted above, the results weren’t what we had hoped for. Actually they were completely surprising. I had been concerned that it could have been a brain tumour (and our paediatrician said that had been her concern too). But Spina bifida? My son? Our son? But I took all that folinic acid, it can’t be… But it wasn’t picked up in pregnancy and we had so many ultrasounds and the sonographer was exceptionally amazing and thorough (not that we would have changed anything if it had been picked up, we wanted this baby and no results would have changed anything about him coming into our family but anything picked up back then would have made us research how we could best support him). We were thankful that his form of spina bifida is considered low grade, but then after I did some searching and joined a few support groups for his exact condition, I realised that the low grade doesn’t mean that it doesn’t completely impact his life. In many cases people have been in so much pain, or have had surgeries every year, or many other things. BUT there have been other great stories. So we have been trying to be realistic, but also remaining positive. And the fact sheets the hospital gave us started with “lower limb paralysis and spina bifida,” and proceeded to “Tethered cord and Spina Bifida” and “bladder management and Spina Bifida.” None of these gave us much positivity. They were all about mobility aids and other medical things I hadn’t really heard much about until now.

Anyway prayers were answered from the post above. Thank you for all praying. His surgery was scheduled straight away for this coming Tuesday. It couldn’t have happened this week just gone (something to do with operating theatres) but they were trying hard for the week after and said that was going to be tough to get it in but they thought it was urgent enough and would push for it. So thank you for praying hard – the surgery is going ahead at the earliest chance.

Photos above: being measured up pre surgery, and then waiting for the ultrasound – he fell asleep in Scott’s arms. He was so over tired.

This brings me to sharing the post above that we shared. After we shared that, again we were inundated with messages. We were still coming to terms with everything ourselves and what this meant (we still are really, and I think post surgery it will really hit home, we are trying not to think that far ahead just yet). And then my beautiful IVF sisters got together and started something that we would never have asked for or even contemplated asking for. I don’t know the behind the scenes stuff, because I wasn’t there, but I’ll tell you from my perspective.

Vicki messaged me and asked if I would allow the girls to set up a go fund me page. And of course she knows me so well that she had to really present her ‘case’ to me. Haha. She knew exactly how I would respond and that I would balk at anyone giving us money and pre-empted everything I would say with her reasons why I should allow them to do this for us. She knew how completely out of our comfort zone this would make us feel, but she said something so spot on that I realised that we should allow my IVF sisters to do this. She said, “by being so self-reliant and independent, I rob others of the opportunity to bless me.” She went on to say how I would do this for anyone else and how would it make me feel each time we have helped someone else out if I wasn’t allowed the opportunity to help them. So with that in mind, Scott and I awkwardly allowed my IVF sisters to set up the go fund me page.

Renee was in charge of setting up the page. I tried to put her off a bit to wait (I guess I was still feeling so out of my comfort zone) but she wrote the page up and then asked me to read it to make sure it is okay. She is amazing with words (how do you do that with a toddler?! You amaze me so much!), and before we knew it, it was ready to go and she posted it. And then shared, shared and shared it. And so did each of my IVF sisters. They all got behind this. And then their friends and so on. Thank you all!

[I have to add here a very cool story (maybe this is my distracted “squirrel” moment, but bare with me). In hospital in the bed opposite us was a boy and his dad, out here on a tourist visa from Austria with the whole family. Jeremiah, being the socialite that he is, at his first opportunity walked over and tried to hug the boy. So sweet. Even a language barrier doesn’t stop children making friends. We got talking to these guys while in hospital and made friends with them. We exchanged contact details and Scott said if they needed a place to stay that they are welcome to come to our place anytime. The boys loved each other and Jeremiah had gained a big brother. A couple of days after we left the hospital post MRI we got a call and I won’t go into the details but we gave these guys a place to stay for a few days. They came to stay with the whole family of 5. We had a great time having them here and were grateful for the friendship. Seeing the kids all play together was wonderful and us 4 adults got to have adult conversation after the kids all went to bed. Life-long friends we have all made here through the hospital experience – see good in any situation.]

Images above: The starlight heroes, waiting for the MRI while watching The Wiggles, playing at the hospital and waiting for an ultrasound.

So while all of this stuff was happening, we were happily distracted with our new friends and trying to give them a welcoming and happy beginnings of their Australian trip. Also why I was able not to think too much about what was starting out with the go fund me and trying not to be scared. Thanks to that beautiful family (in case you read this).

So the page went live and then over the first 24 hours they raised a crazy amount. I remember thinking their $5k goal was funny but I giggled and thought just let them do what they want, and it’s okay that we won’t reach that goal. (Well God had other plans and so did all of you!)

They surpassed that goal and went on to hit 10K in the 3 days! All through sharing and contributing… Thank you everyone. Here’s our little thank you:

We can’t believe what you’ve all done. Thank you so much for your generosity and support at this time. It’s definitely restored faith in humanity in so many ways. We don’t feel deserving of this at all but we are forever grateful.

Thank you for liking, sharing and/or contributing to this fund set up by my beautiful ivf sisters. We’ve stuck together and supported each through the highs and lows of pregnancy and of motherhood. This group has always been there for each other at any time of the day or night. Many times at 3am we are up talking to each other asking or sharing support/advice in those challenging times of motherhood.

These girls have got behind us with this diagnosis. They have googled and researched what it means and the impacts it could have. They care so deeply. And they have really been there for us through this. They have been sharing this go fund me page all over the place. I’m so so so blown away by this type of support (and slightly embarrassed as we just don’t ask for stuff like this ever). It’s brought so many tears to our eyes. We don’t know the degree to which this condition will impact our lives, and we don’t know if Jeremiah will eventually need a shunt to drain his brain fluid (we are praying this resolves itself) and then on top of all of this my back surgery will cost $17k out of pocket (that felt like we would never be able to afford that) plus the 3 months recovery off work.

So what you’ve all done here is to help us at a very stressful time emotionally and already financially. You’ve given us this gift of a lifetime. And any of the left over funds will be the start to my back surgery savings so I can be freed from this pain and be the mother I so long to be. The mother that can rock her kid to sleep rather than asking Scott to hold him because I can’t. That dream may just become a reality one day.

So from the bottom of our hearts please accept this heartfelt thank you. We are so grateful and can’t every thank you all enough. This shows the power of coming together for a common good. Thank you and may God bless you so much more than you could dream of xxxx

img_0251

Over the last few days we have been so blown away by it all. On one hand we are struggling to come to terms with everything and are trying to remain positive. And we are fearful, scared, worried… all of those things and more about the surgery. All of the what ifs… if there’s a complication, will our boy ever walk again? They have to remove two of the vertebrae to get to the spinal cord, will it all go back in okay? And the scar – wow it seems pretty big looking at many others. Parents have said that the scar has remained red and blotchy and not changed over years. All of this was stuff we hadn’t ever thought we would be talking about, especially for our boy.

Photos above: a reminder of the meaning behind Jeremiah’s name (Jeremiah 29 v11-14) and Jeremiah playing in the starlight room during his fast.

But you know what, Spina Bifida doesn’t define anyone. It is a challenge that I don’t personally know much about yet, but you are who you are as a person, not as a condition. Back in late primary school and early high school I used to push other children who were in wheelchairs around at lunchtimes. I remember our school would ask if any other children wanted to hang out with or push the children around, all with varying degrees of disabilities. I ended up becoming really good friends with a girl who had spina bifida and was unable to walk, who needed a wheelchair all of the time. She got bullied. I got bullied. Kids bullied anyone who was slightly different to them back then (I guess some still do this) and they bullied anyone who associated with them. I couldn’t understand why the kids would tease her and tease her and then me. She was such a beautiful, kind-hearted girl. She ended up changing schools, but I’ll never forget her. She taught me without realising it to see the person, not the condition or outward appearance. So I’ve never cared what anyone looks like, talks like, walks like or doesn’t walk etc. But now that my child has this diagnosis, my mind has been travelling back to school. Seeing the kids taunting my friend and I couldn’t stop them, they just teased me too. Will this be a life for my boy? I surely hope not. I hope that this will be a blessing. That he will learn to continue to love and accept everyone regardless of outward appearance. At the hospital he was going up to any child and trying to hug them. Many of these children had some form of tubes attached to machines, so I was worried he would hurt them, but when I looked up into the parent’s eyes I saw tears in their eyes. I think that because as parents, we see our children as them. We don’t care how perfect or imperfect they are, because to us they are exactly as they should be and perfect as they are. And all we really want is for our children to be loved and accepted.

So perhaps this will be a blessing. I have always felt like God has placed a calling over Jeremiah. He will do great things. Have a heart that loves and is kind. I don’t care if he’s the smartest or the best at anything (or the worst), as long as he has compassion, love and the yearning to help others. So maybe this will bring him to a calling field I didn’t know previously.

Anyway, getting back to the funding page. The initial goal of the 5K surpassed and then they hit the 10K with all of your contributions. We actually still can’t fathom that sort of money. There have been so many tears shed here of absolute gratitude. And then I feel helpless because I can’t actually thank everyone personally as I would like to because I don’t know everyone. So can I please just ask, that if you know someone who contributed, can you please pass on our absolutely genuine and heartfelt thank you. We really don’t have enough words to express our gratitude. So perhaps I need more languages… gracias, merci, grazie, arigato, do jeh, daw-dyeh, danke, khop khun mak kha, spasiba, takk, toda, dankie, shukraan. I also need a language of the heart to express this… Our hearts are so overwhealmed with gratitude, joy and we are absolutely humbled by this. When I was speaking to my sister, through tears, I said to her that I don’t know how to say thank you big enough to match this. She said, you just simply say “thank you.” She said there is a time to give and a time to receive. She said right now is our time to receive these blessings.

So I just want to truly thank each and every one of you. We are humbled. Brought to tears many times over. We have that lump in your throat where you don’t know if you’ll cry tears of hold it together. Thank you everyone. Some of the stories behind the gifts have totally blown us and left me a sobbing mess (of gratitude). Honestly, thank you all so much. And thank you for your personal messages and well wishes. More tears for each one.

img_0238

Photo: a visit to the beach before the weeks of no water play – this kid LOVES the water. And so does our dog. We had planned to do this on my birthday but then we were at the hospital so we had a belated beach visit.

Now something else than totally caught me off guard was what I’m about to say next, and the next group of people I need to thank. My IVF mums. My IVF sisters, family through our roads travelled to get our precious babies. You ladies have gone above and beyond. I don’t know how to ever repay you guys. I really don’t know how. Unbeknown to me, on top of the go fund me page, these ladies were all scheming behind the scenes. A group of 54 women. Each with their own challenges and expenses. Together, they came together and collected and then contributed that to the fund which made it rise so fast, over 3k amongst themselves! When Vicki called to tell me this I was a sobbing mess on the phone. I just had nothing to mutter except “thank you” through the tears. To each and every one of you ladies, I have tried to say thank you, but words just don’t do enough. From the bottom of my heart, thank you. I’ve been shaking and numb and tingly for the last few days as I process the go fund me with what everyone has done and then this. I was a sobbing mess long after the call and have tears now. Thank you each so much.

I guess the thing that has really brought me to tears again and again is the care and thoughts from everyone for our son, but that they have also included my back in this. The quote has been $17K out of pocket for the surgery to give me my freedom and relief from the pain. To enable me to be the mum I had always dreamed of for Jeremiah. This surgery we would have to borrow money to do and was definitely a few years off at the earliest – Scott is still studying so we would need to wait for him to enter the workforce for a while before borrowing is even an option. The girls have all said that anything additional raised that we don’t need for the hospital stay with Jeremiah and the following costs associated with this, to use to put towards my back surgery. That just shows the beautiful hearts of these mums. They saw a need with our current situation but they also saw the potential to help us with my back also. This also has brought me to tears many times over.

I never knew how many people might like me. I was bullied so much at school that I figured I’m just one of those people that no one likes for whatever reason. I’ve always had a sensitive heart, so perhaps that was the reason. I’ve never gone out of my way to upset anyone. So this support has thrown my own world into a spin. Vicki keeps telling me to let it be a reflection that people do like me. I am still finding this super hard to believe. We are still left so speechless, the kind of rambling speechless, by everything.

So as I wrap this up, I just want to thank our IVF family, and each person who has supported in any way, shape or form. Thank you for each of your messages – and sorry if we are slow in replying, our little super active toddler didn’t get the memo that we are trying to process everything (the tough and the wonderful). We are eternally grateful, and can’t thank you enough so please accept our deepest thanks for the support you have all given to us.

img_0065

We ask that you pray for the surgeons who will be operating on Jeremiah, for the anaesthetist making him sleep, for the nurses who will care for him, for us as we care for him and for the entire situation, we ask for prayers for a speedy recovery without any complications, and especially for the initial 48 hours where he is meant to lie still. Please pray that his excess brain fluid will resolve on its own without any need for medical intervention. Thank you so much!

img_1373

A message someone sent to me in the last few days has been playing on my mind. And I’m so grateful as we embark on this new journey as a family. The message read:
“for I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in wasteland.” Isaiah 43v19.

img_0150

Thank you for all helping to make a pathway through the wilderness. May God bless you abundantly and beyond measure. xxx

5 Comments »

The story behind the names

Around the time that Hope passed away I had been reading my bible (well, listening through a phone app). The sections that I had been listening to were about the sabbatical year (Deuteronomy 15 v 1-19). Basically (and I’m not a biblical theologian so I may not get this quite right, excuse me if I don’t) the sabbatical year occurred on the seventh year (much like the Sabbath is the seventh day, a day of rest) and was a year of rest/reprieve/release. So I don’t think that meant resting the entire year (as work still had to be done to cook, clean etc) but it was a year when debts were cancelled. Slaves were set free. Chains were broken, there was a release – and slaves were set free and given gifts as they were released to start them off as free people.

When we were pregnant with Hope it was our 6th year trying to have a baby, and she was our 6th pregnancy. It was no coincidence that this came up in my one year plan to listen to around then. So this concept of the sabbatical year had been at the back of my mind leading in to this round of IVF. When we started this round back earlier this year, it was now our 7th year trying to have a baby. This concept about being set free was something that I prayed for. I prayed that I would be set free from the chains keeping us from having a viable pregnancy. That our next pregnancy, number 7, would give us our baby, our miracle. That it would be this year.

And then we got the news that I was pregnant. I kept praying around this concept of the seventh year of release, and breaking the chains, that God would go before us and prevent any complications and to protect our baby. And He did.

I had also been reading Jeremiah, in particular 29v10-14:

10 “For thus says the Lord: When seventy years are completed for Babylon, I will visit you, and I will fulfill to you my promise and bring you back to this place. 11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me, when you seek me with all your heart. 14 I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile.

In the early days and weeks of this pregnancy I was terrified of losing another baby. So I prayed around this passage of Jeremiah. I even wrote it on my bathroom morror so that every time I went to the bathroom (and being pregnant there are many throughout the night) I would see the verse. I would read it out loud until it became so well known that I didn’t even need to read it because I knew it. Every time my mind would worry, I would say this passage.

I love that it says many times “declares the Lord.” That is kind of like a statement, a promise. So He promises us, He promises me that his plans for me are to prosper and not to harm me; to give me hope and a future; that He will listen to me; that He will be found by me (can you imagine a celebrity making themselves available to be found by anyone that wants to find them? Yeah me neither, but God makes Himself available to us ); to restore me; to bring me back from exile. I started saying these things to the baby in my tummy and speaking this life over him.


The number seven in one form or another kept coming up and then Jeremiah kept being referred to in church messages and in my one year plan. So I began also praying about restoration and to be brought back from exile, the drought of being unable to carry a baby to term. And then this (from Jeremiah 1v4-8) also kept coming up in messages at church:

Now the Word of the Lord came to me saying, “Before I started to put you together in your mother, I knew you. Before you were born, I set you apart as holy. I chose you to speak to the nations for Me.” Then I said, “O, Lord God! I do not know how to speak. I am only a boy.” But the Lord said to me, “Do not say, ‘I am only a boy.’ You must go everywhere I send you. And you must say whatever I tell you. Do not be afraid of them. For I am with you to take you out of trouble,” says the Lord.

This was so relevant to us (especially verse 5 – knowing the baby in my tummy before he was even put together) and suddenly these popular verses made more sense than ever to me through the IVF process, especially doing the ICSI. The sperm and eggs are selected, and woven together (inserted). And then the best embryo is selected to be transferred. I was having so much more of a connection and understanding to this more than ever.

And sometime around the transfer of the embryo, it may have been just after the pregnancy test or before, I had a very vivid dream. I had a dream that we had a baby boy and his name was Jeremiah. It was so clear and so real. And I have only ever dreamt that we had a baby once before, and that was when I was pregnant with Hope, and in my dream she was a girl. Call it mother’s intuition or whatever, but both times my dreams were right about what gender I was carrying. This dream stayed at the back of my mind the entire pregnancy. When we got the call to tell us the gender, I had been saying all along that our baby is a boy. So Scott called me to tell me and I said, “It’s a boy” and he said, “Yes, you knew all along.”


Anyway, so the entire pregnancy, the only name we both semi-agreed on was Jeremiah. The meaning of Jeremiah is “Yahweh uplifted” or ‘God uplifted.’ Throughout this pregnancy we have uplifted God the entire way. He has been at the centre and forefront. People around the globe have been praying to God for us – God uplifted. So the name really seemed fitting and we couldn’t find another name that we both liked for a first name that hadn’t already been used by a close friend or family member. We wanted a name that spoke life over our son and that would be a strong name. And this was it. I spoke (and still do) Jeremiah 29v11-14 over the pregnancy and over our baby every day.

So that is how we came to the decision of Jeremiah for his first name. The name kind of chose our son – we felt guided to the name rather than us selecting a name. Plus we both had no negative associations with the name Jeremiah, the only two we have known are both pretty awesome guys (you know who you are).


The questions between Scott and me were then, “what will his nicknames be?” – and you always have to do the Homer Simpson on any name that you are trying to use (test it for ways that it could be made fun of, because we all know when kids are of school age they will find a way to make fun of names). So the nicknames that we like are Jem, Jezz, Jezza.

So his next name is David. This is after three people and in no particular order we will explain. Jen’s dad’s middle name is David so that is one person he’s names after. David is a strong name (David and Goliath). Scott’s brother is David (he prefers to be called Dave). And we have dear friends who generously gave us some money after Hope passed away to be used ‘for a night in the city together or towards our next round of IVF’ – it was our choice. It was such an unexpected gift and touched us deeply – we used it to go towards this round that ended up helping us get our miracle. And his name is also David (and what an awesome person both he and his wife are). So the 3 David’s in our lives all lived up to the strong name and we only had positive associations with the name.


So this gave Jeremiah his main nickname, JD, his first two initials. And we both liked this. We pretty much agreed that this would be his name but we left it open for negotiation. But these were the only two names we agreed on, because like I said, any others had already been used.

I said in our Introducing Jeremiah blog that I wanted him to have 2 middle names. Another name that we had both liked (but didn’t want to use as a first name because my cousin’s child has this as his first name – we tried to avoid same first names as close relatives) was Nicholas. For two reasons, one being that it is one of Scott’s middle names and two being that it is the name of a beautiful little boy who graduated to heaven many years ago – forever young. We never had the chance to meet him, but we are dear friends with his Mum and step-dad. We really believe if he was still on earth, we would be friends too. We also know that this gorgeous boy would be looking after our babies in heaven until we all meet again. (I don’t want to start a theological debate about what happens between now and heaven.) So we felt that Nicholas gives our son a connection to his father, to our very dear friends and to a very special boy.


Another pretty cool thing is that my mum had me when she was 32, and now I have had JD when I am 32. Just a cool side note.

So that’s our boy’s names and the special significance behind each name. Now if we are ever blessed with another child, I hope that it is a girl because we have exhausted our list of boys names that we agreed on. Haha!


And on a side note. The date that he was born (15th October) is a very special day to us. It is the official day to remember babies gone too soon. The night to light a candle for babies lost in pregnancy and infants gone too soon. 

One year ago we were lighting candles, for babies we did not get to meet, on the 15th of October. This year we were holding our beautiful blessing and miracle in our arms. Our boy who has helped bring awareness to this area and who has had so many people praying for his safety for the entire pregnancy. What a special day to have restoration and to be blessed with Jeremiah. Praise God for this blessing! xxx

2 Comments »

Introducing Jeremiah

Introducing Jeremiah

By now I am sure you would have seen that we have welcomed into this world our beautiful baby boy Jeremiah with our announcement video. So now I can tell you how this whirlwind happened. (I will upload another post about the story behind his names when I get a chance to write it.)

For those who haven’t seen our little video, here it is: https://youtu.be/xWsFotPImGk

Also – this is a long post – it was originally going to be a few different ones but I haven’t had the chance to get it all up (funny that, a mum of a newborn with no time… haha).  So I have combined them all.

Birth and Jeremiah’s First Week

On Friday the 14th October I finished up work so that I could have just over 2 weeks before bub was due. I had a very emotional last day at work as a childless adult – the next time I return I will finally be a mother to a baby on earth! And I have never not worked since I was 14 and nine months (the earliest legal age I could start work back when I was a teenager at school. From then I usually held at least one job at a time – one year I worked 6 different jobs all at once, I was very busy juggling rosters!). So not working a formal job is something I just don’t know how to do yet – yay! Being a mother will be a full-time job, I know!

img_9424

The morning of my last day at work – and last day being pregnant!

All of my friends and colleagues were so incredible. They organised a surprise afternoon tea with an incredible display of yummy food. And oh my goodness! More presents than I have ever seen in my life! I was so moved, but determined not to cry, or I would never stop!

img_9427

Wow – amazing spread! And so blessed with all of those baby items!

So that afternoon I headed off with my car packed high with presents (literally! – I had to get help to bring it all home!). I headed straight from work to my weekly doctor appointment with my amazing GP. She checked me out and all was good. She checked the position of the baby and she was a little surprised. She said that his head was engaged even further. I asked what she meant and she explained that usually you can feel the whole head of the baby in the pelvis. She said that she couldn’t feel the top of his head anymore. That explains all of the downward pressure I had been feeling. I asked if that meant I was about to go into labour and she explained that not necessarily, that the baby is just getting closer and could still stay this way for a while, but that yes labour was approaching us.

I finally got home at around 6pm. We unloaded my car and had a bit or a breather at home… I was finally on leave. It just didn’t seem real! So we hung out with the dogs, and did a few general things around home – cleaning, in preparation for people coming over on the Sunday for a BBQ. Well, I did lots of watching because I was so pooped! And Scott did lots of mowing etc outside and stuff inside.

We eventually got to bed, after dinner, around 11pm. I woke up for one of my regular toilet trips (oh the joys of pregnancy) a bit before 12pm. While I was there I got a little embarrassed at myself, I was becoming incontinent… (well that’s what I thought!)… then when I wiped I noticed a light pink tinge (sorry if that is a bit tmi (too much information) but in the nature of sharing openly I may as well continue to tell it like it is – especially for those yet to have a baby)… I tried not to panic, but I know bleeding in pregnancy isn’t usually a good thing. And then there was more incontinence… hmmmm….. I thought it couldn’t be my waters…. Surely not… I’m only 37 weeks and 2 days…. Nope, there it came again and again and again…. I thought waters breaking would be just a light trickle because the movies always exaggerate things (the gush out there). Okay, this must be it… So I called out to Scott… nothing…. I call out again…. Nothing… so then I yell out “Scott! I think my waters have broken!” A very sleepy voice replies, “huh?….” So I repeated it…. Nothing…. He’d fallen back asleep…. (I would have giggled so hard if it weren’t for the seriousness of needing him up)… So I call out again and tell him my waters have broken, and he was up like a flash! We remembered from classes and all of the reading that waters breaking doesn’t mean labour is coming straight away but we were told to just call the hospital when it happened, if it happened – many have contractions first.

So Scott called the hospital to let them know what was going on. The midwife/nurse said to put a pad on and try get some sleep and call back in an hour to see if the pad was wet or not. Well, sorry for the gross information, but it was full a lot sooner than an hour! But anyway we called back in an hour and told them what was going on. The nurse confirmed it would be my waters and asked to talk to me. The nurse said that I could wait at home until my contractions came on and were regular or I could come in straight away. I decided I would rather wait at home in the comfort of my bed, with my dogs and then come in when I needed to. She agreed and wished me all the best.

About ten minutes later our home phone rang… at 2.50am – who is ringing us?! Scott grabbed the phone and it was the hospital. The midwife said that on review of my file and due to the high risk pregnancy they want me to come in straight away for observation. Ugh, really? I was looking forward to my bed and hanging with the dogs… okay, change of plans.

Photos: Last photos with the dogs as a pregnant mum 🙂

So we got a few last minute things packed, toileted our dogs and spent some time with them… I got one last photo with Zazu and Sophie before we went to the hospital. We arrived at the hospital around 4.30am. Parking was a breeze! If you ever go into labour, in the middle of the night is a great time! There’s also no traffic, we got to the hospital in record time!

Photos: time we arrived at the hospital, buzzing to get in at the hospital, reaching the maternity ward, the little baby beds in the hallway on our way to our room.

As soon as we got there the midwife got me on the bed, and into a hospital gown. She hooked me up to the monitors so they could monitor the contractions and the baby. A man came in to put the needle in my arm. I have had many people sticking all sorts of needles in to me… and this man was incredible! I didn’t even feel it go in! Now that is an absolute first!

The birthing room, Scott sleeping, more of the room, my arm ready to be hooked up.

The midwife returned and said that she had spoken to my obstetrician and he wanted me started on antibiotics via drip and to be induced straight away. Due to the high risk, my baby had to be born within 24 hours of my waters breaking and since my contractions hadn’t started yet then they needed to start them. So this was all done pretty quickly. By 5am/5.30am I was in full labour (not the pre-labour that many people class as labour but I was in actual labour). And shortly after there was a swap over of staff and I got a new midwife.

I was determined to get through labour without any drugs that can be passed on to the baby. I only wanted gas if I really needed it. I was determined to use my deep breathing and calm thinking to get through it all. And I was doing so well. Full on labour was tough, and the contractions were getting closer and closer. Poor Scott – he has offered his hand for me to grab hold of for each contraction. I don’t know how I didn’t injure him – but he took it so was and was the best support anyone could ever ask for. By 10am I was getting contractions every 1 and a half minutes to 2 minutes. It was very full on. I tried the gas, and it was harder to use than just breathing through them. So I decided not to bother with the gas since it didn’t actually relieve any of the pain.

Photos: Scott and me during labour.

This went on until 3pm. I had been in full on labour for about 10 hours with no pain relief (well a few tries of the gas but like I said, that did nothing). Yes, that’s right, full blown labour with contractions averaging every 2 minutes (some at 3 min some at 1 min). I can’t describe how full on this was. There wasn’t a lot of recovery time in between each contraction and there wasn’t that gradual build up, it was just full on. From other ladies that I know who were also induced, their contractions also started straight away and generally had their babies within 3 hours.

My body was knackered and I was only 4cm dilated. The internal examinations were worse than the labour itself – that’s telling you something! It was horrible and I never ever want another of these in my life after having 3 during labour. Surely with this day and age of technology, there has to be another way of measuring dilation without someone shoving their fingers/hands into a place with such force that it is close to assault. Anyway, enough said about that one!

I asked the midwife to ask my obstetrician about a C-section because he had mentioned that it could be a possibility depending on how my labour went (I think he wanted me to keep my mind open because I really wanted to do it all naturally). I didn’t want one but my body was finished and it wasn’t dilating quick enough. I didn’t want to give up (and I wasn’t) but I also didn’t want this boy to become distressed either. I felt like something wasn’t right and I wanted his opinion – that’s why he is paid the big dollars. She was reluctant to call my obstetrician but we insisted that we wanted his advice and he needed to at least be kept up to date with where I was at. So eventually she agreed.

The midwife called my obstetrician and came back to me very quickly. She said that he wanted me in straight away for an emergency C-section. By 3.15 I was being prepped to go in. It was all so sudden and wasn’t something I had originally wanted but I knew my body wasn’t coping and I just felt like something was wrong. I became so emotional looking at the hospital basinet in the corner – soon our baby would be in there. I had been looking at that through all of the contractions and picturing our boy in there as I gripped Scott’s hands.

Photos: last photo of my belly – between the early contractions, Scott asleep again, Contraction counter on my phone, Scott dressed for theater and Jen being wheeled in to the operating room still having contractions.

So in I went by 3.30pm to theatre. By this stage I must admit, I was a bit of a blubbering mess. The emotions, the contractions (still happening) and the shock were all hitting me at once. I felt so emotional – I didn’t want to fail our kid by having surgery because then the recovery will be longer, but this was what was needed. I was also emotional because I was incredibly scared. Terrified. Absolutely terrified of a C-section and the epidural that goes with it. To be awake during the surgery. This was everything I never wanted. But it was needed…. Breathe, Jenni, breathe!!!! I was crying too because we were about to welcome our miracle… I had only just started to get my head around being pregnant…. And I was also scared because Scott wasn’t with me at this stage.

They took me in to the operating room. So many faces… so many people… I think at least 8-10 people, and none of them were Scott. The surgical tools were being sorted, so many silver objects and cutting tools… and the green cloths under the tools… And then shakes set in, I couldn’t stop shaking…. Full on shaking that would last the entire time and a fair while after the surgery.

They got me up on the bed, and asked me to sit forwards… lean forwards more, and more, and more… this blubbering mess just wanted to hold her husband’s hand for the most scariest moment of her life. They finally went and got Scott to come hold my hand (usually they said they don’t get the partner in because they often go all faint, haha, not my man).

So Scott held my hand and tried to help calm me down so I could stop shaking. And just like that I started to get a really weird sensation down my left side of my body… and then both sides went all numb as they lowered me to a lying down position. People were poking and prodding me to see when I could stop feeling them. The catheda went in (now that was a weird thing I hope I never need again!) and then shortly after I could only feel people touching me but not at the same time, like a numb feeling. It was the weirdest feeling and I was still terrified. The blue curtain was up so that we couldn’t see what was happening and Scott was holding my right hand at my head and the anaesthetist was holding my left hand. And tears were streaming down my face like a blubbering baby – speaking of which, they had already started cutting in to me and pulling our little man out.

Turned out that his head was in the wrong position for delivery and the umbilical cord was wrapped around his foot/ankle. My obstetrician said it was a good thing I knew my body and asked about the surgery because he said I would have laboured on for many more hours (because I wasn’t dilating enough fast enough) with possible forceps and I would have ended up with this surgery much later on anyway due to those two things. So my message from this is always trust your body. Your body will tell you what to do.

The feeling of the C-section was so weird and yukky. Hated the pressure that I could feel. It was so so so strange…. And then they said, ‘who has the camera?” Scott said he did, and they asked if he was ready and he said yes, and down came that blue curtain so that he could take photos of the birth of our son…. And I lay there, waiting… is he going to come out alive… will we finally get our miracle…

And there was that beautiful first cry…. Relief swept over me… and then they took our son over to the light to get the umbilical cord blood pumped through so that Scott could cut it. I looked to my right as this was happening… I kept asking “is he alive? Is he breathing?” And then they brought him over to me and placed Jeremiah on my chest…. All I remember saying is “he’s alive, he’s alive, he’s alive. Scott, he’s alive!”

Photos: Jeremiah coming out of my tummy – and that beautiful first cry.

Jeremiah was on my chest and he was so quiet, just peaceful and calm. And my eyes were crying even more… he’s really here… and his hair was light and sooooo wavy! I had tubes and things attached to me everywhere. Scott was holding Jeremiah to my chest and I just remember thinking how heavy Jeremiah was… how did that weight fit in my belly?! And all I could do (I was hooked up to so many things) was stroke Jeremiah’s head with my index finger. His skin was the most beautiful I had ever felt. He was perfect… even with all that weird stuff on him, he was perfect. I had always wondered if I would be like “yuk, get him off me that is yukky all that blood and stuff.” But it was nothing like that at all. It was surreal and I was instantly in love… and a mother. I could only see one eye and his nose due to how high he was on my chest. And while he was there my tummy was being pushed and jabbed as they fixed me up inside and stitched me up. Scott looked at me and said, “so name? Are we going with what we had picked?” and I replied “yes, but I want to add that other name too.” He said something like, “I don’t want Jeremiah to have two middle names” (Scott has two middle names and I think he’s only wanted one). I replied something like, “babe, I just went through labour AND a C-section, are you really going to say no to me now??” and he replied, “okay, two middle names it is!”

Scott cutting the cord and then hanging with his son!!! 🙂

First skin-to-skin contact with our son!

Photos: Scott trying to distract me while I am being stitched up (that felt so weird) and also my first cuddles with Jeremiah – you can really see how exhausted I am with those dark circles under my eyes!

Then it was time for both of my boys to go upstairs, for Jeremiah to be weighed etc and to wait for me up on the maternity ward. I didn’t want either of them to leave, but I had to be in recovery and monitored for about 45min to an hour before I could go be with them. I watched the clock tick and it felt more like an eternity.

So the details are:

  • Jeremiah was born at 4.16pm on Saturday the 15th October 2016.
  • He weighed 3.2kg and was 50cm long.
  • His hair was light blonde/brown and he has beautiful blue eyes.

Photos: The boys – Scott with Jeremiah while all of the measurements are recorded.

In recovery I still couldn’t stop shaking. I remember reading about the post birth shakes that you can get. Basically your body has worked so hard and it just shakes. And I was also surviving on less than an hour’s sleep since Thursday night and it was now about 5.30pm. The people in the recovery were lovely and we all got chatting. They made me feel a lot better.

Photos: Scott and Jeremiah hanging out at the special care nursery.

And finally it was time to go meet my little boy again. I was wheeled to the lift in the foyer. A man was there with his son and some flowers, they were talking about the boy seeing his mum and new baby. And the little boy kept looking at me weird, being in a hospital bed would have been confronting for the poor kid. I managed a ‘congratulations’ and a smile. The little boy smiled back… and I thought, “wow, I’m about to meet my little boy.”

Up in the lift we went and through the hospital corridor… it felt like we were travelling so fast that my tummy was churning… and then I saw them at a glance… in the nursery, Scott holding Jeremiah… my heart melted…. We arrived at my room and they said goodbye as a midwife arrived… and then… they walked through the door… Scott and our little boy! I welled up with tears!

Photos: Meeting Jeremiah for the first time, our precious first moments as a little family.

Scott came over to me and asked if I wanted to hold our man! Yes yes yes! But with help because I still had no feeling in my body from the chest down. Scott placed Jeremiah on me and the tears came. What a truly special moment. In that moment the shakes went away and we held our son together. And Jeremiah was just perfect. Wow… so so so perfect! We took a few photos.

Meeting our son, first real cuddles and that tiny hand holding my finger.

Then the midwife came and said time to unwrap Jeremiah and give him a feed. Yay! I was so excited and so glad that I had done as much reading on this and attended the breastfeeding class. I wanted to do baby led attachment. But as I was taking Jeremiah the midwife took him off of me and said she would do it. I said that I would like to have a go first and her reply was, “no, you don’t know what you are doing and neither does your baby. I know what I am doing.” What the?! I was in disbelief and I wanted to snatch my baby back off of her and tell her to leave us alone but I couldn’t yet move… stupid epidural! So she took him, pushed open his mouth, grabbed my boob with her hand and shoved it into his mouth… well what do you expect happened? What would you do if someone forced your mouth open and shoved something in your mouth? Jeremiah cried. That’s what happened. She kept shoving that poor little head. And finally he went on enough for her to stop and then he unlatched again. I politely said again that I will do it myself. And finally she backed off because her method wasn’t working. I swapped sides (a dog training technique there, don’t keep forcing something that isn’t working) and gently put his head near my left boob. And what do you know? He latched himself on straight away… we don’t know what we are doing hey?! The midwife seemed surprised. I was so relieved when she said she had to go get something.

Photos: Jeremiah and me time 🙂

So everyone wanted to know the details for our precious boy. He came in at 37 weeks and 3 days by the time he was born. He weighed 3.2kg (the average weight for a baby at 39/40 weeks gestation – so he was a big baby for his gestation even though he was so tiny), and he was 50cm long. And everything about him is just perfect. He isn’t technically classed as premmie but he also is, if that makes any sense at all… (I realise I just repeated myself but I’m too tired to change it!)

His name is Jeremiah David Nicholas. Yes I got my way with two middle names. And his nickname is JD. That’s his initials. He also has Jem as a nickname. So if you see me refer to JD or Jem, that is our baby. I will share the story behind his name in another post because there really is quite a special story to his name – each of his names.

Photos: Meeting Jeremiah in our room and our first special moments together.

That first night in the hospital, Jeremiah had to go into the special care nursery for observations while I recovered from the surgery. And Scott got to go home, look after the dogs and grab a few other things for the rest of the week that we would spend in hospital (and work clothes as Scott would be going to work).

Photos: Scott, JD and me; our awesome doctor Dr Matthias; and Jeremiah (JD)

That night I got to watch JD sleep beside my bed in his hospital bassinet until 9.30pm when the midwife came to take him away to the special care nursery for the night. The pain meds were great at disguising the pain. The people in theatre said the first night would be fine and the meds would stop around 8am the following morning.

Jeremiah came back for a middle of the night feed and then he was taken back to the nursery. I got as much sleep as I could that night – though people kept coming in to check vitals. I couldn’t wait for JD to come back in the morning. It was 8 am and he still hadn’t come back in. But breakfast was delivered – a liquid one until I passed my first bit of wind. And all I felt like was real food. Oh well, liquids were better than nothing. I did get a sneaky nit of toast that one of the midwives said I could eat. Eventually the cqatheda came out (I think I preferred it going in – going out wasn’t much better). And finally at long last my little boy was wheeled in to me for a feed and a cuddle. It was magical seeing him come in. His sweet little face. He had a good feed and then went back to sleep. It was so amazing.

I was left in bed for a while and then eventually the pain med drip came out, but the anti-biotics were still being administered via drip so that needle couldn’t come out yet. The nurses wanted to get me up to shower and use the loo, but one thing here and there for them (other patients) meant that I didn’t get to get up until Scott arrived around 12pm. And by this stage my pain meds had worn off. They tried to get me up and the pain was excruciating. I thought labour was hard, I thought having a perforated bowel was bad (in 2015), but this was beyond all of those. We managed to make it to the bathroom which was a few steps away and then the pain set in too bad to even sit on the loo – why are hospital loos so low?! Why not make them higher, most people in hospitals aren’t there because they feel fine and dandy. Help was called to get me back to my bed. And the midwives decided that I could have some pain relief! At last!

After about 15 minutes the meds had taken effect so that I could make it to the bathroom and back so fast before it was too bad to move again. Thanks to my wonderful Scott for taking me there. And let me just say, that post birth, there is absolutely no dignity. And if your partner hasn’t seen you at your worst, well they will certainly see you there during labour, during birth and post birth too. At least the IVF process works you up to this gradually.

And back in bed, where I would be stuck for another day or two. It melted my heart to see Scott changing Jeremiah’s nappies, cuddling him and caring for him. But it also broke my heart at the same time to be unable to do any of these things for him. One things I could do was breastfeed JD and give him skin-to-skin contact which was beautiful. One lovely midwife who also loves dogs as much as I do asked if I would like to be moved to a room with city views. Yes please! So she said we would be moved soon.

We decided that while I was stuck in bed and while JD was coping so well – he was pretty chilled out – we would invite immediate family (who had been immunised) to come visit in hospital that day if they wanted to come. So my parents came from 2-4pm during the visiting hours and brought us a nice supply of food.

Photos: Jen’s parents meeting their grandson!

Later that day my sisters and their families came to visit. Jeremiah coped so well during all of the visiting hours which ended around 8pm that night. And then the unsettled baby began. I was still unable to get up without a lot of assistance from Scott. And JD was having regular feeds, and later we would discover he really wasn’t getting enough – even though they don’t need much. We had a terrible night – with little to no sleep and a very unsettled baby.

Photos: Jen’s sisters and their families meeting Jeremiah.

Scott stayed with us on Monday but had to head home for a few hours to pick up some more work clothes for the week. While he was gone I couldn’t pick up JD yet so the nurses and midwives had to help. He slept most of the day again and had lots of feeds from me. My parents came to visit him again during visiting hours which was nice of them. That night was another terrible one, with little to no sleep – but I was able to get up and look after him now. My surgery would pain was under control now. So I spent most of Monday night trying desperately to settle JD.

Scott went to work on Tuesday and my mum came to be with me in hospital to help me care for JD. Thankfully my movement was becoming much better. I was able to do most things myself but it was nice to have mum visit and she enjoyed it too. JD slept most of the day between feeds from me. After seeing us, Mum went to go look after our dogs for the rest of our hospital stay.

Photos: Mum visiting, Jeremiah having his hearing test done (he passed), being checked out by the midwife, lying in the sun to help get rid of his jaundice, and general baby spam photos of a gorgeous newborn!

And again, that night was terrible. Lots of crying from JD and me. I was desperately trying to feed him and settle him and nothing was working. So it was a long night. I kept telling Jeremiah that I love him. That he is such a blessing. And I thanked God for this beautiful child, for the sleepless nights we were having with this miracle. My milk hadn’t come in yet but the tears sure had. My nipples were so raw and so sore from trying to feed JD.

On Wednesday Scott went to work again and my oldest sister Karina came to be with me to help me with the lifting etc. By then my nipples were bleeding and painful. And before she got there I had been in many tears, trying to feed my baby, who would latch and drink away, as I clenched my teeth in pain, and then he would scream because he was still hungry. And my milk still hadn’t come in yet. I was desperately trying to feed JD. Out of desperation I asked one of the midwives if I should top up JD with some formula and it was almost like she was relieved that I had asked. I later found out that midwives are technically not supposed to bring it up, so the mother/father has to ask for it. She very quickly returned with a top up feed of formula for JD. Instant relief – this kid drank like he hadn’t been fed in days (probably because he really hadn’t). As soon as the milk was gone he was a passed out, happy, milk-drunk baby. At last – the reason for his crying was because he was starving. I was happy that he was settled and relaxed, but I was in tears for giving him formula.

My sister was such a big help with giving me advice with the feeding and telling me that putting his needs first above my pride was the most important thing. And of course loved hanging with her newest nephew. Scott grabbed some formula on the way back to the hospital after work. That night was so different to the ones before.

More baby spam! Including his first bath, hanging with his parents and Aunty.

On Thursday Karina came back to help while Scott was at work. I was in so much pain trying to feed still, plus my back had become a major issue. It had become very painful on Wednesday but by the Thursday it was spasming. Badly, to the point where I would collapse when it spasmed. This meant that I couldn’t lift up Jeremiah anymore. While she was out steralising some bottles for my expressed milk, I managed to get out of bed so that I could go look at my darling JD. As I was walking over to him my back spasmed and I collapsed on the floor and was unable to get back up. My sister couldn’t get me up either so we had to call for help. And when help came, they called for more help. The nurses got me back to bed (I didn’t get to go over to my baby) and they called a doctor in to see me. He said I should be on pain meds (which I wasn’t) and the staff had been reluctant to give pain relief due to breastfeeding. A physiotherapist also came to assess me and she felt the spasming and seemed annoyed that I wasn’t getting the pain relief needed to ease the back pain.

Finally I was given some relief enough so that I could move a little bit, but I was unable to hold JD in case I dropped him. It is heartbreaking to be unable to hold your newborn. To watch him cry and be unable to do anything. And then I was so worried about being released and having no relief from pain at home.

That night Scott had to do most of the feeds with formula, and he was so tired by the morning. And I finally had a chance to get our announcement video done and up – this was something I had wanted to do for years. I just needed time to do it. And we hadn’t told anyone about his birth other than immediate family yet. We needed time to adjust, and as you can see, we were having quite a few challenges, we just needed time first.

Photos: relief with topping up feeds for Jeremiah (bottom photo is liquid gold that I squeezed out over about 45 minutes!), hanging with his Aunty Karina and also one of my tummy post surgery.

A beautiful knitted teddy for Jeremiah from this lovely lady.

A photo of Scott and his twin at birth with their parents, and a photo of Scott and me with our son at birth.

It was finally release day Friday. We were so excited to get home, but I was also very anxious. Real life would start the moment we left that hospital. No more pre-made meals for us, no more pain relief (even though this was very hard to get), and time to introduce JD to our dogs. This was what scared me the most. Things weren’t going to plan at all. I had planned to spend maternity leave doing the final part of the preparing the dogs program – but I didn’t get up to this due to early labour. And now my back was so bad that I couldn’t interact with the dogs or hold JD, nothing was as I had planned. We were supposed to have one of us hold Jeremiah while the other one played with the dogs and gave them time. Introducing each dog one at a time to JD. And now because of my back this couldn’t happen the way we had planned things.

Photos: last night at the hospital, coming home outfit (dog prints), getting home to see my mum and my dog, settling Jeremiah at home and the “welcome home” that my mum made on our bed for us.

More tears were shed coming home. Tears of joy, anxiety, pain, happiness, and everything in between.

The Second Week

The very next day Jeremiah turned one week old! Wow!

1-week-old

1 week old!

Somehow as a new family we managed the first few hours at home (on the Friday) and then the first few days and nights. Well, Scott managed. I was stuck in bed or in a chair. I had little to no interaction with our dogs or Jeremiah because my back had become so bad. Worse than in hospital. I literally couldn’t walk without Scott holding me for the spasms. Scott managed to get me an appointment at our GP for Monday. It wasn’t ideal to be heading out so soon with a newborn but we needed help for my back.

Photos: Jen stuck in bed, Scott looking after Jeremiah, two of our dogs waiting for us, Scott reading to Jeremiah in bed, and a lovely fruit and flower basket that was sent to us.

Mum came with us on Monday so that she could keep JD away from the germs at the doctors while Scott took me in – I can’t drive for a while after the C-section and due to the spasms we didn’t want me collapsing at the doctors. I was prescribed a fairly strong pain relief. This outing took almost all day with a newborn and a very slow wife.

Photos from our first week at home: copying Jeremiah faces, Mum visiting, my bestie visiting, father and son selfie, a beautiful fruit basket from some friends, opening up presents from work friends.

I started the meds straight away, hoping for some relief… but it really didn’t help much at all. We pushed on until our midwife home visit on Wednesday. The lady was lovely who came out to see us. I think she realised that although we were absolutely delighted with Jeremiah, we were struggling. I was struggling. A lot. Mentally. Probably the worst, at my lowest. I couldn’t lift my newborn baby, I had to watch him cry and couldn’t (literally, couldn’t) get out of bed to help him. Scott was caring for a newborn, and a wife who was physically unable to do a thing without his help. I couldn’t even roll over in bed without his help – and when I say help, it wasn’t just a push me over and I’m on a new side, no… it was a gentle push or lift and then a spasm, and then continue and repeat. It was hard and he is amazing. He was doing so so so much.

img_0395

Weighed at the midwife appointment.

Then there was my lack of milk. I was still so depressed that we were formula feeding too. And that my boobs hurt so much to even try JD on them, and pumping was hurting. Things were so low for me mentally. And the midwife realised this – wouldn’t be hard to recognise! What new mother wants to watch their child cry and not help them?

So she said that she would come back the following week if I wanted, and I was quick to say yes please. She mentioned something about a midwife program for people at risk of PND, which simply doing IVF puts us at a higher risk but with the birth, and then the post birth complications I was placed at high risk. Yes, even very positive people have high risk. I said yes please to the program if it was available.

Photos: lying in bed as a family because I couldn’t get out, Scott looking after Jeremiah at night, bathing Jeremiah at home.

The good news was that Jeremiah’s jaundice was looking much better and his weight gain was great too. She said it was perfect. Our little boy passed with flying colours. She did say that the paramount thing for us was to get my pain and spasms under control can then we can look at milk supply. So back to the GP. I was placed on Valium and a muscle relaxant (wish would flare my UC but rather flare that and then settle that later). I started the Valium that night.

On Thursday we had a Newborn photoshoot for Jeremiah. Of course he slept all the way there, then decided to stay awake almost the whole shoot, and then he slept all the way home! We all know what ‘they’ say about working with babies and animals… haha.

Jeremiah managed to wee on both Scott and me. And he managed to poo too! Haha… what a crack up – like that pun! The photo shoot was fun anyway and we are sure one day JD will love to look back at the images of himself as a little baby.

Phone photos of the newborn photo shoot.

On the way home we visited my sister Karina and her kids because she had a terrible migraine – so we wanted to drop off some medication for her. Jeremiah had lots of cousin cuddles and Aunty cuddles. And then it was time to head home via my parent’s house for a quick stop off. Scott and my mum decided that it was best for JD and me to come stay the night with her on Friday night and stay all day Saturday while we had workmen at our house.

Photos below: Visiting family, and my set up at my parents with Jeremiah, (the movable couch for me to sleep on) and Zazu.

 

The Third Week:

Just like that Jeremiah turned 2 weeks old!

2-weeks-old

It’s amazing how long it takes to get ready to go somewhere with a newborn. It took us most of Friday morning to pack an overnight bag, and pack Zazu and me up ready for a visit. We got to my parent’s house around 3pm. I now see why people with babies are always late. They need feeds and changes at the most random times.

And of course, being Saturday, it was the day that Jeremiah turned 2 weeks old! Wow – already! My little boy was growing and is growing so fast already!

Mum and Dad knew that Scott and I were planning on buying me an electric chair (see above photo from the night before) that I can sleep in and get out of on my own. We really couldn’t afford it but I wasn’t sleeping much in our bed, and I was dependent on Scott to get me out of bed. This was something that was worrying me about when he went back to work. And also the reason why I wasn’t resting during the day. So when Scott found this chair on a clearance sale we decided we would see if I could get out of it – and I could – so it was money well spent. My parents kindly gave us a gift towards my independence again. So Scott and I went to the store to collect it and then it was set up for our overnight stay at my parent’s. My other sister and her family got to come have some time with JD too.

That night, I was able to get up when Jeremiah needed a nappy change or a feed. I could do it all on my own! I can’t begin to describe how much joy this brought! Such relief too! And to have Zazu near us was bliss too. I finally had some decent sleep that night.

And all Saturday I could sit in my chair, feed JD, get up out of the chair on my own. Wow. It was amazing! And the workmen took so long at our house that JD and I got to spend another night at my parent’s. Lucky for them getting grandbaby cuddles.

Photos: grand parents and family cuddles, also a photo of my belly 2 weeks post birth.

Scott came and picked us up and set the chair up at home. For the first time since being released from the hospital, I was able to have some sleep at our house and get up on my own. It was amazing, and totally lifted my spirits. To have independence. To be with Jeremiah. Wow… so amazing!

Photos: independence having this chair, Scott has been working so hard taking care of all of us, and more baby spam. 🙂

By Monday evening I was off the Valium and my back, although still sore, was able to function on its own. No more spasms!!! Such amazing relief! No words can describe it!

And the good news is that we were accepted on to the midwife program. It runs for two years and I have an awesome midwife who is also a lactation consultant. Hooray! What a blessing. So she will be helping to increase my milk supply for JD. So there is another positive.

The reason for sharing such a long post is that tomorrow our little miracle is 3 weeks old. And in those 3 weeks it feels like we have mentally been to hell and back. So many tears have been shed. And if it weren’t for our special due in November social media group (which about 16 babies have already been born!) – well, I don’t know how I would have coped mentally. When your body is failing you so badly, it is very hard, and very depressing. You adore your newborn, none of the sadness is about them, but it is about how much of a failure you are as a mother. Having this incredible support network helped me realise that many of us were having a very rough start and that all of these hormones weren’t (and still aren’t) helping us. But we have all reached out to each other. We have shared our distresses about some of our horrible labours, about some horrible recoveries, and about low milk supply. We have shared our guilt about formula feeding, and we have supported each other through the 1am tears. The things that I thought were unique to us, have actually been so common. It would be so easy to spiral downwards emotionally without the support and network that we have together. Sisterhood is so important. We keep each other remembering the big picture and that we are all doing the best as mothers (and fathers). And we all put enough judgment on ourselves, we don’t need anyone else judging us – as some have experienced in regards to things like formula top ups.

I hope that others who experience some sort of depression post birth (and I think that is probably almost every woman to some degree because hormones are crazy), then I hope that you talk to someone. Anyone, but know that it’s normal. Everything I’ve experienced is normal to some degree. Not every woman will have a complicated labour, followed by a complicated recovery and low milk supply, but those three things are also connected so maybe some will. And feeling depressed about your body being a failure doesn’t at all reflect anything of how you feel about your baby. Not at all. We all adore our babies. I often look at JD and cry tears of joy.

Photos: baby spam, having lunch outside as a whole family (us three humans and our three dogs), Jeremiah very proud of himself for passing the weight test, and more baby spam because he is adorable.

And just like that our little man is 3 weeks old! He would be a newborn now if he had come closer to his due date. He had 3 more weeks left in my tummy, but they have been spent out here with us. And what a joy and delight he is. He is worth every single ounce of pain, and every tear that is shed. He is a joy and blessing from the Lord. Life was never meant to be easy – and it took a looooooong time for JD to be gifted to us, so it may take a long time getting to an equilibrium balance. But we will all get there. None of the pain is JD’s fault, or mine – even though it is my body that is failing me once again. It’s just some of life’s hurdles. And my little motto I’ve been saying to myself is “I will not be defeated, I will not be broken.” That’s what would go through my head as my back was giving out and Scott was holding me upright. And I also keep thinking of that Toby Mac quote that was in our video – “You were given this life because you are strong enough to live it.” So perhaps our trials and hurdles will help others travelling a similar journey into parenthood. One thing I know, is that God is with us, and He’s with me. As I sit up at 1am and express so hard and long and get 50ml of liquid gold for my baby, I am never alone. The tears I cry praying that my baby will get the nourishment that he needs as I am in pain trying to get him to get enough from me are caught and saved by the One who gifted us this miracle. And having low milk supply has also gifted us another blessing – Scott has been able to have a lot of feeding bonding time with his son as he gives JD a bottle. If we were having enough milk from me then Scott and JD wouldn’t get this precious bonding time. So there is joy in everything. We just have to look for the positives. If my back hadn’t have been so bad, then perhaps Scott wouldn’t have gotten that precious bonding time with JD.

 

The Fourth Week:

Before JD could officially turn 3 weeks old, we were out at 3am for my dog Zazu. She had a sudden onset illness which took us by surprise. I hadn’t gone to bed yet after feeding and then pumping (some call it expressing but mine doesn’t express out so I feel this word does not do it justice). Around midnight Zazu got very sick. She is my soul dog. I stayed up watching her until we called the vet and then left home around 3am.

3-weeks-old

I was able to reflect back to the labour and birth of JD again. I look back with such happy memories of that day (even though it was not fun at all going through all that pain!). I look back with happiness because that was when this pregnancy that I had became real to me. When we met our beautiful boy. When I heard his first cry.

Anyway, back to Zazu. She ended up being admitted to the vet hospital and it wasn’t looking good for her. I was terrified inside. How could I feel such joy and happiness for my boy, yet at the same time feel such fear and sadness for my girl?

Jeremiah needed a change and feed as it was now around 6am. So we decided to go visit my parents so they could at least see their grandson. We ended up falling asleep there for a little bit while we anxiously waited for that phone call to tell us more about Zazu. Well, I dozed. My mind was too anxious and full of prayers to actually sleep.

Photos: at my parents house while we waited to hear how Zazu was from the vet hospital.

The vet hospital said my girl needed to stay and remain on the drip while they worked out what was wrong with her. So we made the decision to go visit her before we went home in case she didn’t make it. It was so hard to see my girl in so much pain, and know that this could be the last time that I saw her alive. Even typing that brings on more tears. I hope she is with us a while longer.

To cut a long story short, she was released the next day (after many tests, ct scan, ultrasounds etc) and with lots of medications. The rest of the week she was not herself but eventually came around.

img_1118

Happy to be coming home!

This week Scott was back at work. The first week we were in hospital and Scott worked. Then the next two weeks he had off (which was needed due to my back issues) and then this week I was on my own. I tried not to shed too many tears! The thing I found hardest was eating and being able to use the toilet. Once Jeremiah wakes up in the morning – and I wake up with him, then the day is on. He needs his feed, his burp, more feeding, nappy changes (many of those) and before long it’s way past midday and I haven’t had a chance to eat yet, or use the toilet or pump (I really need to do this to help my milk supply to continue to increase). And I know everyone says that you sleep when the baby sleeps – well I didn’t get a chance to do that at all this week. When he is asleep I do the above things and then I have to steralise the bottles and then he wakes up. And repeat. Oh, and then there’s this blog which I have been trying to get up since a few days after his birth and each week I am just slowly adding to it in the hope that once I have added to it I can upload it… so if you are still reading this when he is 3 years old, that’s how long it took me to upload this. Haha

“I got dressed up to welcome home my Dad”

We had a great first week together, but you may want to keep away from the stinky mother of this child until her husband is home each day – so that she has a chance to shower. We had the midwife visit us again this week. She watched Jeremiah attaching for a breastfeed and watched him feed. He’s doing brilliantly. So we just have to keep trying our best – he’s clearly not getting enough from my lack of supply. I’ve tried pretty much anything and everything you can think of. So we will just keep doing what we are doing and topping up with formula. The main thing is that this baby boy is fed. However that happens is irrelevant. And he is using a dummy to improve his sucking and to help him settle. I know this is a controversial thing for many people, but it has been helping him and Jeremiah’s well-being is our first priority.

Photos: a collage of Jeremiah and my first week together while Scott was at work, and more baby spam – also my beautiful Zazu still in recovery.

As I mentioned, food is something I am struggling with. On Thursday my beautiful sister and mum came to visit – WITH FOOD!!!!! Oh my goodness! I could have cried! Mum brought us our groceries and then some!!!

Photos: More of our first week together and also the food delivery!

So we have food! Woo hoo! And my sister had made us a whole bunch of vegan meals! Oh so so so yummy! What a great cook! I don’t know how she found the time to cook!

Photos: more of Jeremiah and my first week together (Scott back at work), my sister and mum’s visit, liquid gold and baby spam. 🙂

And then on Friday, I had a huge delivery box delivered to my front door. So heavy that I couldn’t move it to the kitchen on my own. A beautiful friend of mine had gone to the effort of finding a vegan meal place that delivers. She bought me 2 weeks’ worth of diners (I may or may not be eating them at lunch time for breakfast). How amazing is that?! I almost cried putting them all away. So thoughtful of her and so generous! So now I am so happy that we have some food. And food that I can whip out of the freezer, pop in the microwave and eat on the go. I feel so immensely blessed!

 

Photos: hanging out, a crying baby (yes he cries too), those precious feet, pumped breast milk – liquid gold, 3 weeks post birth.

Jeremiah weighs 3.8kg. So he has put on 600 grams since birth. Wow! What a fantastic number… it doesn’t sound like a lot but I can feel it when I carry him. Especially with this bad back of mine. I hope it comes right before he gets much more bigger/heavier. I’ve also noticed he is much longer, too. I just adore this kid.

Our beautiful little boy, JD is perfect in every way to us and we are so blessed beyond measure to be granted this miracle that we have been praying for. Thank you for praying with us and for us. Your prayers have been answered! Please continue to hold those desperately wanting a child in your prayers, too. And for our adoption laws to be improved so that for those like us, adoption could have been an option too (we all know that there are so many children in foster care who would probably prefer to be adopted).

Some inspiration.

(Now let’s hope that I can get this blog up before he wakes up, I fall asleep or before next week rolls around and past me! And if there are any spelling errors (I’m sure there are) or grammatical mistakes (I’m also sure there would be), it is because this exhausted, but very happy mother can’t find the time to go back yet again and re-read before her awesome baby boy wakes up. So Jeremiah, when you read this one day, please ignore the mistakes – I loved you so much that I wanted to attend to you when you woke rather than my computer screen. ——– side note, it took a few more attempts to get this up, between sleeps, feeds, naps, etc… haha… but we got there in the end!)

I can’t believe that our little boy is now 4 weeks old – and now a month old! He will start smiling in the next few weeks, so stay tuned for the next update. Thank you so much for your prayers. He is such a miracle and a real blessing.

img_1258

Being weighed with our midwife.

4-weeks-old

We are all celebrating 4 weeks!

 

A special thank you to everyone for your thoughts, support and prayers. It means so much to us and we are forever grateful. Thank you for all of the gifts, messages and cards. We are so speechless at the generosity and support. Thank you so very much! We will do our best to continue to include you in Jeremiah’s life story. You have helped to create him with all of those prayers. The saying goes ‘it takes a village to raise a child.’ Well, I believe it takes a global praying community to create and raise a child. Thank you so much!

img_9523

(*Some photos used came from the amazing Shannon at http://www.shannonelisephotography.com.au/  —- she has been amazing at capturing some of the most precious moments for us)

 

10 Comments »

31 weeks to 34 weeks

31 weeks

This past week has flown by. My sciatica is so painful but again, so worth it. I’ve had it on my plans to pack the hospital bag since about 20 weeks. Well, this weekend I finally got around to finding a bag and packing it with everything that we have already that may be needed at the hospital for the baby and for me. Scott can pack his bag. So I managed to get most things in, and then there were just a few things that we needed to go buy. By Sunday night everything that needed to be in the bag was in the bag minus my clothes – I’m still wearing them and have a very limited supply of ones that fit so these can be thrown in closer to the day. I felt a real sense of achievement and relief after I had finished packing it. One less thing to stress about.

Handy tip for anyone packing their bag: put all of the baby’s clothes into zip locked bags and label them. That way when you are looking for something in a hurry, your partner can help find the singlets or whatever it is you need fast.

On Sunday it was also Father’s Day. We went to church in the morning and heard a great message by John Grey. If you get the chance, he is worth listening to. Our boy enjoyed moving to the music. And making his mum and dad laugh – especially with the hiccups. I actually really don’t enjoy the feeling of the hiccups. I know it is great for his developing lungs but it feels so weird. Scott laughs every time he has them because it makes me so squeamish.

I saw a really cool idea for a card on a social media website so I copied the idea and made our own message. Scott seemed to like it. I had also loaded him up with books to read to prepare him (and me) with some knowledge. It was probably one of the best Father’s Day celebrations – for once we had something to look forward to.

img_8295

Another great thing happened during the 31 weeks – I had two days without nose bleeds! Woo hoo! I also had one day where both sides of my nose bled for almost an hour. But you take the good with the bad. I’ve had daily nosebleeds for most of this pregnancy, so to have two days without a bleed was so amazing!

img_8317

Positiveness makes everything seem better.

We got some more painting done inside the house. So much more to go but each step forwards is great. It will be great to like the inside of our house when I am looking at it while on maternity leave.

We were given this awesome book this week, too. It is one that I had wanted to get one day down the track. I was so excited to be given it! It’s a great little story.

img_8157

I’m finding it so difficult to roll over in bed – the pain in my legs makes it difficult. But my wonderful husband helps me in the mornings to get out of bed. During the night he enjoys his sleeping and I take my time to get out – sometimes it’s a race between my bladder and my pain to see if I will make it to the toilet in time or not.

img_8739

Haha This is so true – or what’s worse is doing this and then realising you need to get up to pee anyway.

I’ve been trying to get the previous blog uploaded but just can’t get the photos to load. It’s been *slightly* frustrating. Hormones may be adding to it just a tiny bit. I am breathing deep and learning more patience. I’m sure I will get it done soon… maybe by the time you read this both will be up. (This one has been taking ages too – photos take forever to download and load.)

img_8148

How cute are these pants for our little Baker? A gift he was given from a friend.

Third trimester energy… totally awesome concept and idea… I am yet to experience this. I still think it is a mirage and doesn’t really exist. Some cruel person made it up so that people have something to look forward to, only to find out that the exhaustion actually gets worse. But that’s okay, it gives Scott something to do… you know, finding all the random things I place in random places because I don’t remember what I am doing. And it keeps him busy preparing food for me. Without this extreme exhaustion he wouldn’t have so much to do…. (Friendly sarcasm in case you thought I was serious!). As I type, he is in the kitchen preparing my huge lunch for tomorrow. He always gives me about 3-4 types of fruit and/or veggies plus my main meals times two. He is such a hero in all of this – never underestimate the power of a supportive husband. He keeps me going!

img_8049

Scott brought this in to me as I typed. Such an awesome guy!

And a few positive thoughts to finish the week off with. I love the Toby Mac page – there is always a great, positive thought there to read, to uplift you.

And here is my growing belly:

13879428_591862724350305_1611999117169466616_n

32 weeks

This week my sciatica has eased up a little bit. It’s still there but I can actually move without losing my breath each time. I also feel a lot bigger.

We were so lucky this week – we got to catch up with my bestie. Her youngest is 8 month old and he had a fascination with my belly. Kept reaching out to touch my belly. I’ve never seen a baby/infant do this. It was as if he knew. He did get to feel our little man move. It was so awesome and yes, I did cry a little bit… maybe that’s the hormones. Here he is touching my belly below. And also we got to attend a sports game together.

I also discovered that I can no longer bend over and wash my dog. I tried. I really did. I got half way through and then ended up in uncontrollable tears until Scott came and took over. My knight. I tried plan A, and then needed plan B – Scott’s to help. 🙂

I’m feeling so much more discomfort and am really struggling to sleep – making me so tired. But you know what? I thank God for all of this. I’m not complaining about it all. Just acknowledging that this is a challenge worth going through. I am so thankful for the rest that I do get.img_8365

My mum came over and gave us some time in the yard so that Scott isn’t having to do everything. I have to keep resting my ankles because they are just swelling up every day now.

I finally got our previous post up. Took forever to get the photos to load! I’m hoping this one is much quicker! The first person has popped in our due in November group! It just got real! So exciting – twins for her.

img_8359

Zazu wanting some of my home made hot chips… I guess you could call this a craving that I have had…

And here is my growing belly and also one of Scott and me together:

Here’s my 32 week notification, a great book that I’m reading (which was actually part of Scott’s Father’s Day present), and smoothies that we have been making to make sure this bub is getting all the extra nutrients that he needs.

33 weeks

We had a check up with our obstetrician on Wednesday and also had to pay our management fee – ouch! We also used this as an opportunity to discuss birth and what our choices are. Obviously sometimes there are emergencies but we wanted to lay down some things that are pretty much set in concrete for us. Some things that we feel strongly about and aren’t prepared to compromise on unless it is a life or death situation.

img_8203

“Yes, there is a baby in that belly.”

One of the things we feel strongly about is the cut. Also known as the episiotomy. It used to be common practice but these days it is considered not needed and not best practice. It can also leave a female with so many complications lasting for a year or longer. So one of our non-compromises is that I do not want to be cut. This is a no go and we believe it must be something you should have to consent to in order for the doctor to do this to your body.

img_8486

My view.

Another non-compromise for us is position in birth. We’ve read enough and talked to enough professionals to know that the traditional giving birth on the back is no longer best practice but ‘lazy’ practice – it is designed for the obstetrician to be able to sit and see better, not for the birth to go better. The back part of a woman’s spine needs to be able to move and rotate a bit like a flap as the baby comes out. If you are lying on your back on the bed, it physically cannot move and then you can end up with permanent injuries. So unless this is a position that I want to be in, it is a no go for us. I doubt I will want to be in that position anyway. So we said that this is another thing that we feel strongly about – allowing my body to work out the best position for the birth.

img_8492

The view an ant has.

Our third one is delayed cord clamping. Some doctors cut the cord fairly soon after birth.  It saves them having to wait around, is what we have heard. But it is now considered best practice to allow all of the blood to flow through the cord into the baby. So we have elected to do this – where the cord is not cut until it goes white and the baby has all of the blood in them instead. We had talked about cord banking, but it is simply so expensive that we can’t afford it. And the decision was based on a possible help in the future for our son versus an immediate help at birth for him.

img_8487

Scott and me waiting for our appointment.

And the last thing was due date. We won’t be going past our due date because IVF babies typically hold a higher risk when going past their due date but also in general, this is where still births are more common. We also asked about a water birth but apparently it can be dangerous to stay in the water as the baby is born but we can be in the water prior to that.

I took Thursday off of work so that I could rest my body – it totally needed the rest. The obstetrician also gave me Friday off of work but I went in anyway – I was raised to work hard and not to take time off unless I pretty much couldn’t get out of bed. So for me, even having one day off was a big deal and took a lot of convincing.

On Friday morning, I went to let the dogs out of their crates and collect their bowls. We have two resource guarders and it is the safest place to feed them in their crates so that they don’t fight each other. Well on this particular morning, as I was letting them out of their crates, one of them came towards the other dog as she was being let out which created a potential for a fight. I had to quickly intervene (to ensure that there wouldn’t be a fight) by picking up the bowls and distracting them towards the door (our regular routine is to open the crates and take out the bowls as we all head outside for a pee break). As I was trying to get them to go straight outside, I tripped over my own feet and fell all fours on to our floor. And then had to quickly hop up to continue to shoo our boy towards the door so that he wouldn’t continue to instigate or escalate the situation. In falling I had pulled a muscle in my back and then I had to push through to get our boy to go because he kept trying to check on me.

img_8576

I need one of these…

I shooed my boy (dog) through the door and managed to get as far as the bathroom where Scott was getting ready for work. By this stage I was in so much pain from my back and was in tears. Possibly some pregnancy hormones in there too. He left what he was doing and immediately hugged me and tried to mend my back for me. And then of course insisted that I don’t go to work. But after a few minutes my back eased a little, although I still couldn’t bend my toe.

I insisted that I was fine and went to work that day. I had a doctor’s appointment that afternoon anyway so I knew that I would at least be checked out then.

During work I had some very kind people looking out for me. Scott had messaged one of his mates to make sure that someone else also knew and could watch out for me (Scott made me promise that I would tell two of my friends about the fall, so I think he was telling a third in case I didn’t say anything).

img_8595

When life gets hard, remember that you can get through it!

I got through the day okay, my toe still hurt but thankfully at the doctor there was still a strong heart neat and good movement. My blood pressure seemed fine and there was no blood in my urine. She said to keep an eye out for blood and for any pain that continues and gets worse. So far so good so I think our little man is just as stubborn as me… I didn’t just admit to being stubborn did I? haha

I’ve been getting what I think is Braxton Hicks the last few days. So I think my body is getting prepared for labour but it knows I’m not ready yet. And reflux – oh my goodness it hurts and keeps me awake most nights for ages. I know it will go away over time though.

This week we had to take my old girl to the vet. She behaved so well. Older dogs are the best. If you ever get the opportunity to foster or adopt an older dog, I say go for it! Here she is at the vet and then on the way home.

Oh and the second person in our group popped. That’s now three babies (two ladies) due in November that have been born. It’s really getting real!

Here’s something extra special. A day before we turned 34 weeks, we had our third trimester ultrasound with our favourite sonographer. She checked everything out and our boy is still developing well. He’s still a bit ahead too. Speaking of heads, he has a big one. He’s getting a big head from all of this attention. So now I just hope that he doesn’t get such a big head that I need a c-section! So far he should be okay for a natural birth but he will need to be monitored for my sake. I may have shed a few tears seeing him on the screen… I mean, who wouldn’t? Look at those chubby cheeks! Such a cutie already – must take after his dad. Here’s a some photos.

img_8654

Look at that little hand to the left and that button of a nose!

img_8659

Look at those chubby cheeks! And that nose! 🙂 Looks like a baby version of Scott.

Our little man looks a lot like Scott (I think). Phew! Our embryos weren’t switched with anyone else. 🙂

And lastly, here’s a picture of our growing baby bump:

34 weeks

img_8777

Baby expo time!!!!

This weekend we went to a baby expo. It was so much fun to be there and to be one of those ladies – the ones with a basketball shoved up their dresses, also known as a baby bump. Scott and I had lunch there after lots of walking around (and lots of people at the stalls saying I look like I’m about to pop –thank you). I was looking around me at all the bumps and reflecting on how we got here. I tried to say to Scott, “it’s nice to finally be here and be one of the pregnant ones,” but it came out more like a wavery voice mumbling something because he replied with “huh?” So apparently hormones make us ladies emotional.

(Now looking at these photos as I upload them, I am suddenly craving a salad!!!)

So we had fun walking around, trying freebies and just generally seeing what’s around. I almost fell asleep in the car on the way home! And the rest of the day at home was a ride off – I went straight to bed. It’s amazing how tired walking around with an extra 10kg plus makes me!

Here’s a freebie bag I got – free stuff is always fun!

On Sunday my parents kindly came over and helped us finish the painting inside and with some yard work. This is one of the nicest things you can probably do for anyone expecting. In my opinion. I watch Scott bust his heart out to cook, clean and keep this house and me going. I do the best that I can. He is trying to do everything, and then all of the additional things on top of it have left him burning the candle at both ends. And his dislocated shoulder has limited him too. So the help my parents have given to us has been so helpful beyond any words. I am so thankful to see Scott getting a hand because he so desperately needs it. He would never ask for it though. He’s more likely to offer help to others before he will ask for help. That’s one of the things I love about him.

What a relief though to have the painting inside finished – for now. There’s still some other areas to be done but those can be done after the baby is here. The main parts are done for now. Yay! Thanks Mum and Pappa.

Oh my goodness! Creaming soda is the best! It is just amazing! You remember that red drink from childhood that was only for very special occasions? Well I think our son has already decided that he loves it. He better enjoy it while he tastes it now because he certainly won’t be getting any of these sugary drinks until he is much older. And hopefully I won’t be wanting them after birth anymore. I used to rarely even want a sugary drink prior to pregnancy. At least majority of this pregnancy my body has really only been craving fruits and vegetables so it’s been pretty healthy, a few sugary drinks should be expected.

So something else exciting happened this week… On Friday the 23rd September we administered our last clexane injection for this pregnancy! I never thought I would want these needles to continue but you get so reliant on that security blanket that as each medication slowly drops off you want to hold on to it a little bit longer. But this one is so awesome to be stopping. I may actually have nosebleed free days. Having at least one nose bleed every day is not fun. You never know when it will start dripping blood. And it’s usually at the worst times. So now that this medication is over, I am looking forward to when I eventually have days without a nose bleed. To being able to blow my nose gently without a pool of blood. I’m not sure how long until that day but hopefully soon.

 

Here is a video of the last clexane injection. I have my terrified look on… the one I have every time I have any needle. This is also the first time I have watched it – not at the time of filming – I positioned the camera and then looked away into my heat pack… but afterwards… and I didn’t faint. Nice to have this one done and dusted (finished).

Well that day came, today. On Tuesday the 27th September. I was able to blow my nose gently today without a massive nose bleed. It still did have a slight bleed, so we aren’t there yet, but it wasn’t a massive one. I didn’t have to stand there for over half an hour waiting for my nose to stop bleeding. It was more like 5 minutes. Yay! The luxury of blowing my nose, haven’t been able to do this in months!

I also started getting sick on Friday night. My body is fighting this bug off. I think I passed it on to Scott though – sorry Scott… at least he can take cold and flu tablets. I can take…… water. I’ve been trying my best to rest when I can since Friday but as you can read above it’s been pretty busy and I also have tons of work to do before maternity leave so I’m trying to get it all done.

Yesterday I had an eye specialist appointment. That was interesting. You see, the bonus of having ulcerative colitis is you get so many surprises along the way of life. One of those wonderful (sarcasm) surprises is getting growths/ulcers in and on your eye lids. Oh it’s so exciting (sarcasm), you just never know when one will appear. This one on my eye appeared around the second trimester and hasn’t gone away. It has only gotten bigger. It was so incredibly painful when it came out but now it is just very annoying. And gets in the way a lot. Usually they go away after a few months, but this one has decided to stay. There are actually two, one on the outer and one inside. The inside one hurts a lot.

img_8831

Waiting for the blurry man. Lucky I took this – now I know what the place looks like without blurry eyes.

So after doing many treatments on my eye that should have made this added extra go away, and it deciding to stay, I went to the eye specialist. That was an interesting experience. The nurse or receptionist takes all of your details in the eye testing room. Then she puts this stuff in your eyes which makes them vey blurry and numb. Then you wait for the doctor. And wait. And wait some more. And you can’t see. It’s a hoot! I was giggling away at how everything was so blurry. Then the blurry doctor comes in and talks to you and checks the eyes out. He agrees that the mass has decided to make a home in my eye lid. He said that we will have to wait until after pregnancy to do much for it. Surgery is the answer. So he’s booked me in for surgery after this little fella is in this world. I will get to catch up on some sleep and when I wake up these lumps will be gone! And I will get to be a pirate for a few days with an eye patch. I hope that when I go in for surgery that I will recognise my doctor – they will have to blur my eyes so that I can pick him out from the line-up because that is how I know him. I couldn’t pick him out if I could see properly.

After the appointment I asked at the reception as I was paying and trying to punch in the numbers for my credit card how long my vision would remain blurry for. They said an hour or two. Hmmmm…. So I can’t really drive… so I went to my car (ouch! The sun is sooooo bright!). I sat in my car and called Scott. At least I think I dialled his number, the guy on the other end sounded like Scott but I couldn’t tell you for sure if I actually dialled his number because I couldn’t see – I did it on auto pilot mode. Pity I can’t drive on auto pilot mode. The guy on the other end told me to stay where I was, keep my sunnies on and try take a nap, but to lock my doors.

I stayed in my car and did as was suggested. And eventually I could see enough to drive home via groceries. Once I got to the grocery store I realised that I felt so groggy. So I grabbed my groceries as fast as I could (I lost track of time, definitely groggy!) and went home. It was late afternoon by then and I spent the rest of the day in bed. Exhausted.

img_8816

He is sitting on my right side – every time I take the camera out to take a photo or video he goes back to normal and quiet…

34 weeks has proved to be quite eventful and at the same time exhausting after not much! Night times take a few minutes to roll from one side to the other. It’s so interesting the things pregnancy does to the body. It’s still amazing to feel the baby moving around inside. Especially when he goes from one side to the other. The whole belly moves. It’s so weird but so awesome at the same time.

It’s so surreal to think that any time now we could be holding our baby in our arms. We hope that he stays put until full term, but from here it’s relatively safe for him to come. We have tons more work to get done before he comes, so it would really suit us much more if he could wait it out, but we won’t be complaining when he decides to show up.

We thank God all of the time for this incredible miracle. And we pray for those waiting for theirs. And for those who have lost theirs way too soon, for we know that feeling never goes away. We count ourselves as so incredibly blessed to be going through this season in our lives. And we pray and hope (and have spent many years learning as best as we could) that we will be the best parents that we can be for our son and hopefully for any siblings after him.

We treasure each movement, and each step. We don’t know what the future holds and this may be our one and only chance at carrying a child. It sure is expensive having the infusions and medications on top of the IVf process – we may not physically be able to afford another one. We really hope that we can provide a sibling for our boy but we are just so forever thankful that God has given us this opportunity. Every ache, every discomfort is a reminder that this is real. Each high five and movement is a reminder that there is a real human growing inside my belly – he may feel more like an alien at times, but it is so awesome beyond words.

I would never wish loss on anyone, and am certainly not glad for our long and painful journey to here. But we can’t change the past – we can only learn from it. So that being said, the path that we have walked, and sometimes been dragged through, has given us perspective that we would have never had before. Instead of complaining about each stage of pregnancy, we have rejoiced. For every injection, we have given God a prayer before.

Someone said to me the other day that they stopped believing in God because of their losses. And whilst I can understand this to some extent, I have found that God has revealed so much to me through each painful loss. He’s allowed us to grow in ways impossible without the life experience that we have had. And through it all, He’s been there for us. We wouldn’t be on this side of things without Him, and we certainly wouldn’t be here with a positive spirit if it weren’t for Him, I can tell you right now this journey creates bitterness when you don’t look up and out. So call it coincidence, or call it answered prayer, but every time we have prayed, God has answered us in one way or another. Every time we have been so broke that we haven’t been able to afford the next medical appointment and we’ve wondered how we will pay for it, and we have prayed, God’s provided for us. Every tear I’ve cried, God’s turned into beautiful rain that nourishes the spirit. What was meant to hurt me has only made me stronger. I don’t believe that God is the source of the bad, but he is the source for turning the bad into something good, and giving purpose in those times where you can’t seem to find a reason.

We are about to reach 35 weeks tomorrow, my belly has dropped and I am getting lots of Braxton Hicks. This boy is getting prepared for his journey into this new world ahead of him. As he does, we are preparing too. We have a post yet to come about our wishes for birth which we will share in the lead up to his birth.

Here’s our growing baby bump:

Thank you all, once again, so much for each and every prayer. We are almost there… praying that God continues to grow our boy healthy and to take care of us, with no complications. Thank you so very much for all of the support. xxx

5 Comments »

27 weeks to 30 weeks

27 weeks

Well that kind of snuck up on us! We were so excited to reach 27 weeks, as we are with each new week, and then I get a notification on my phone from a pregnancy app that I have. It says something about congratulations on reaching the third trimester. Huh?! I messaged Scott and we both had a bit of a ‘how did that happen’ moment!

So we are here, the third trimester! I can’t believe it! And our baby is at a much safer stage. It feels a lot nicer – like we can begin to relax a little… well once I get down and relax I can’t get back up again anyway haha!

I haven’t gotten that burst of energy yet that everyone talks about… bring it on! I have still got the nose bleeds though. Not to worry, I’d rather a bleed from a nose than a bleed from down there!

I am feeling a lot bigger now and struggling to fit any clothes. If I could stay home all day that wouldn’t be a problem – I could live in my pyjamas! But we can’t wear that to work can we?

Next up for us is the glucose test this weekend. Looking forward to that…. Haha.

So here we are, in the middle of the glucose test. I had a blood test before it started and then had to drink a very sugary (glucose) drink. At first it wasn’t so bad, except that it is weird to drink so much sugar before having any breakfast. But as I sit here and wait out the hour until the next blood test (and next drink), I am starting to feel sicker and sicker. Yuk. And if I vomit then we have to cancel this test and come back again. So I am telling my brain not to vomit!

img_7010

3rd Trimester!

I’ve had a very bad ulcerative colitis flare up this week. Scott got me booked in to see my GP who was very concerned and managed to get me in to see a specialist the very next morning, The specialist wanted to put me straight back on to the prednisone. Nooooooooooooooo! I begged him to instead put me on the Salofolk because it has always worked for me in the past. We came to a deal, I would use the prednisone for 3 days on a high dose and stop to get the flare under control straight away and then I could stay on the Salofolk. There was a BUT thought. But, if it didn’t clear up then he would be putting me back on the prednisone ongoing.

Good news is that the quick hit of prednisone and then the Salofolk kicked this ulcerative colitis in the butt! Yes pun intended there! It quickly got under control.

28 weeks

My clothes keep shrinking! I’m running out of things that fit me, especially for work. At home I live in my pyjama pants because they are the most comfortable things at the moment – and warm.

During week 28 I was attending a sport day, and the weather was set to reach 24 degrees Celsius with plenty of sun. This was a great thing except for one thing… I don’t have any summer weather clothes that fit me.

So the afternoon before the sport day I was literally on the phone to Scott asking him to go via target and pick me up any pair of shorts that would fit me. Men’s, ladies, maternity – whatever! Just something that I can wear on a hot day. As I was on the phone to him I was opening up a surprise parcel from a beautiful person that I know through our last pregnancy Facebook group – the due in May one. I’ve kept in touch with a few of the ladies and she is one of them. Anyway, I was opening up this parcel and you’ll never believe what was in it – a pair of shorts!!!!! I was over the moon and told Scott to skip target and just come home because I now have a pair of shorts to wear! She also gave me some beautiful summer tops and a very comfortable summer dress. By the weekend I had already worn everything she had sent me! Such a life saver and I am so truly thankful, especially in the timing. I couldn’t believe that as I was desperately needing something it arrived at the exact time. Had it come a day later it would still have been very much appreciated but I would have missed the opportunity to wear the items to the sporting day. So if you are reading this, thank you so very much, Natalie! You are amazing! And the timing couldn’t have been more perfect! And the baby clothes are absolutely adorable too! Thank you so so much!

Well as easily as we crossed the line into the third trimester, so did this little scare come on. On Wednesday night I noticed that my left foot/ankle had swollen up huge. My right was pretty normal for pregnancy – some swelling but not huge. My left leg also had some tingling. I decided to go to bed so that I could ice my foot and elevate it. This didn’t really help all that much.

IMG_7369.JPG

Swollen foot/ankle.

On Thursday my ankles were still swollen but looked much more similar in size. The left was still a little bit bigger though so that night we called the after-hours nurse hotline to see if we needed to be concerned or if we just keep resting it because some other mums had told me that this could be preeclampsia and to get checked out.

So the lay on the nurse hotline told us to go straight to the emergency department after we answered a few of her questions. Great…. I hate hospitals. Sorry if you work in one… I don’t hate you, just the whole going to the hospital emergency. I avoid it at all costs… I’ve only had losses of babies after attending hospitals while pregnant and also last pregnancy when I couldn’t breathe they failed to check me seriously and I had whooping cough. That ended up with broken ribs from coughing so much and I am sure I spread it around without realising it because I was only checked by my GP days later and then treated for whooping cough. (Before you get annoyed at me – I have been vaccinated against whooping cough 3 times, and I have had it 4 times and none of my blood work shows me ever having had either… this is why herd immunity is so important for people like me with a low immunity to things, we catch anything and everything even after immunisations.)

So after we were told to go to the emergency department I had a little cry. I was terrified of going there. Of being around other illnesses and potentially catching something and passing it on to our baby or having complications. Of attending a place of doom for us previously. I begged Scott to just not take me and we could book me in to see the GP in the morning. But given that I had also had reduced foetal movement, Scott convinced me that we should follow the advice of the nurse and go to the hospital (a 35-40 min drive away).

Reluctantly I went to the hospital in the freezing cold of the night. We were seen in triage after about 25 minutes of waiting. They told us to take a seat and we would be called soon. They also gave me a urine sample container to give them a sample in to test for protein. I did that straight away. 2 hours later we still hadn’t been seen by a doctor and that urine sample – it was still sitting on the desk where they had said they will test it shortly. We waited and waited. And then we waited some more. And as the coughs and vomits around us were flowing, we waited some more. The waiting area was full – we had to stand for about an hour before we got a seat for the second hour. Not so great for a pregnant person who is having some issues that has brought them to emergency.

So then after 2 and a half hours of waiting Scott went to the desk to ask what was going on and how long until we would be seen – I was fading quickly. Why hadn’t they monitored the baby for the reduced movements yet? Thanks to Still Aware I know that this is something that is protocol for hospitals – so never let it not happen if you or someone you know have reduced movements in pregnancy. They said that they had been too busy to check the urine – well they had been having conversations and chilling out behind the counter – we had been watching them as we sat right in front. I know places can get busy but this was just a poor excuse. They admitted that they had forgotten to check the urine.

I ended up saying that we weren’t waiting any longer and I would rather go home to rest in my own bed. The nurse said to wait because they suspect a blood clot in my leg. Scott asked if there was anything they could do for that. They said yes, an ultrasound, but they couldn’t do it there because there was no one to work the equipment and I would be given a referral. So what were we waiting all those hours for????? I don’t like to complain but this was just ridiculous. I also asked why I hadn’t been sent up to the maternity ward yet – and the response was “because this isn’t a pregnancy related issue.” I couldn’t help but blurt out, “are you kidding me? I’m 28 weeks pregnant and I have reduced foetal movement, of course this is a pregnancy related issue!” (I then felt a little embarrassed for not holding back my words! I think I was way too tired, too over it and also worried about the boy.) So all of a sudden they sent us up to the maternity ward for monitoring. This took another hour or so to do and they actually tested the urine for protein. No preeclampsia. Woo hoo. And after a bit of poking and prodding our little man woke up and started to move a bit. Thankfully the monitoring showed that he was fine.

By the time we finally left the hospital, it was about 20 minutes before 4am. We got home a bit after 4am which meant getting up for work in about and hour and a half… needless to say that wasn’t the brightest thing to do so I had the day at home to sleep and rest.

We have since found out that if anything like this happens again, we can go straight to the private hospital (over an hour away but it is where our obstetrician works out of) to be seen immediately. That would have been far quicker! I hope there isn’t a next time but good to know this.

29 weeks

Last week in the twenties. Each week is just such an incredible blessing. We just can’t believe that we have made each week. This week has brought on pain. Lots of pain! Sciatica type pain, but this time in my left leg and lower back. Shooting pain every time I move. Am I complaining? No way! This is just too great of a blessing to complain. The pain is just a reminder of the most amazing miracle that is growing inside my belly.

img_7592

Dog cuddles!

I went to see my Osteopath this week and he gave me some relief. The pain is still there and shooting but I think it will start to get better now. It just means that I am walking like I need a walking frame. And you should see me at night! What a hoot! I can barely get out of bed and get to the loo. I have to laugh at myself or I think I would cry! So I laugh! I feel my way along the wall and brace myself on the edge of the bed, hold on to the door frame, learn forwards to brace myself on the basin and then flop on the loo. And to get out of bed – I get Scott to push me out. Haha.

img_7556

My growing bump with Sophie in the background. 🙂

I also saw my obstetrician this week and he wrote me a referral for an ultrasound on my leg to check out a blood clot, now to find time to do this… And the results were in from the glucose test – no gestational diabetes. Yay!

And I also had an appointment with my GP doctor this week too. My weight is the same that it was two weeks ago at 61.1kg. So for this pregnancy so far my weight gain has been 11.9kg. She was pretty happy with my weight so I am not worried. Considering I am meant to put on around 14kgs it seems like I am on track. I also had my whooping cough vaccine this week. I’m glad I had it done now in case he does come early.

img_7587

Growing belly!

We attended a breastfeeding class held by the Association of Breastfeeding Australia. It was brilliant. I had been so worried about how to actually breastfeed but now I feel pretty confident about the mechanics of it all and how to do it. Now I will just have to hope and pray that our baby attaches well and that I produce enough milk, and an abundance of it. So much cheaper to breastfeed rather than buying formula but I will do my best! It was so great to have Scott there, too. I’m so blessed to have such a supportive husband that is involved in all of this. Having a supportive husband/partner is one key ingredient to reducing stress.

So last week in the 20’s. Still can’t believe it. It’s incredible. It really is!

30 weeks

We have now crossed the line into the 30’s. Can you believe it?! I actually can’t. I still catch myself getting surprised by my belly! It’s just something we never thought would actually happen. We had actually lost hope around the time of Hope’s passing. It seemed like this would never happen for us and we were accepting that. It’s just such a blessing and a miracle that this is actually happening. And the pain I have from the sciatica is a great reminder that I am not dreaming, this is real.

Odd pregnancy symptom this week has been an insanely itchy belly just at the top in the middle but a little to the right. And it is so weird because when I scratch it, it’s numb, I can’t feel it. So weird. And another thing, my very sensitive teeth that I had for ages have gone away. I can eat cold stuff again without immense pain. For those of you with sensitive teeth, I now get it and I feel so sorry for you! It really is painful!

The clexane seems to be working so well that I don’t remember the last time I got through a day without a nose bleed, until a Sunday during week 30. Woo ho! One whole day with no nose bleeds! Which was followed by Monday with a double bleeder – yep both sides going at once. Lasting for about 45 minutes. It’s so frustrating having so many bleeds but it isn’t the end of the world and it is worth it. Today I have already had two nose bleeds. They can come t any time. They seem to happen the most in the morning (probably because it is close to the clexane needle from the night before). The most frustrating thing is that the nose bleeds happen at any given time and they can make me so late to meetings and appointments.

Thankfully the ulcerative colitis is still under control and I can use the monitoring dose of Salofolk instead of the daily dose. So happy to have this disease under control again. Apparently the flares can cause fatal complications in pregnancy.

This week and last week we have been doing some painting in our main living area in preparation for this baby. We want to try make the place feel nice and warm – just like the baby’s room now feels. It’s amazing what a bit of white paint and a trim can do. I’ve been painting the trims so that I can stand still and be near airflows from the windows for ventilation. Scott and I are extremely exhausted and there’s still so much to go!

The sciatica is ridiculously painful and I am still limping. I see older citizens with their walkers and I am slightly jealous of their walkers. Next week I get to see my Osteo again – it can’t come soon enough! My leg, back and butt are in excruciating pain! But like I have said, it is a great reminder of the blessing growing inside me. A few weeks or months of this pain is nothing compared to the pain of grief. I can endure all of this pain for this little boy!

img_7938

This man is amazing! He takes such great care of us!

On the weekend my parents came over to help us in the gardens to prepare for snake season which is almost upon us already. Our yard is massive, and with me being out of action it is just too much for Scott to tackle on his own – especially with his shoulder (it keeps dislocating) and his knees (which keep giving way). It was so great to see my parents and they helped us so much with the yard. There is still tons to go but they made a massive start. I tried my best to do what I could – but that was mostly staying in one spot or hobbling inside to get some water. Such a beautiful and sunny day though and a great day to be outside. Our dogs enjoyed a bit of play time in the big yard. It’s great having the two yards – each time we take our dogs out into the big yard it is like taking them to a dog park for a run minus all of the unpredictable dogs that attend those types of places.

So tomorrow we will officially have 9 weeks to go. We will be in the single digit countdown of weeks. I can’t believe it! And to think that he could arrive any time is excitingly scary. Packing the hospital bag for the three of us has been on my list of things to do for a while – might have to get that done this weekend. Our list of things to do is growing by the minute! There isn’t time for anything!

Thank you again so much for all of your prayers, thoughts and support. We will never be able to put into words just how amazing everyone has been. And how much it means to us. It means the world that so many people love and care about our boy before he is even born. He is one very lucky kid – I hope that one day he reads all of these blog posts and sees the comments that people have made and know just how loved he is. Thank you! You’re all so special to us. Each and every comment and prayer and thought. Everything! To walk this journey and have the support behind us and all around us helps us stay positive and feel like we are on the home stretch. It’s like running a race – the support helps you push on even when you’re not sure how it will all turn out. So thank you!

(We have been meaning to update our blog for so many weeks now – but the time is flying by! We have so many things on for almost every bit of free time that we have right up until the birth due date – things like birth classes, appointments etc. It’s a very busy time but a very exciting time!)

10 Comments »