waiting for a miracle

Our biggest hero

on January 23, 2018

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

One response to “Our biggest hero

  1. Natalie says:

    Oh Jen. I have no words. What can I say to comfort you guys? Nothing really. This is such a personal hell. We can offer words of comfort and encouragement and I’m sure that all helps but at the end of the day you guys are sitting there watching your baby suffering and in pain and I so wish this wasn’t the case. I pray for Jeremiah’s recovery and I pray for God to give you and Scott strength to get through each day. I hope beyond hope that soon we’ll be getting good news. Thank you for sharing this and keeping us updated. Our thoughts and prayers are with you always.

    “Every word of God is flawless, He is a shield to those who take refuge in him” Proverbs 30:5


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