I have been staring at my keyboard for about 10 minutes, with no idea what to say.
How can you turn numb emotions into words that make sense?
How can you explain the fear, the complete unknowing and helplessness of things happening around you that you have no control over?
I can’t sleep. Hunter and I have been in bed since 6:30pm, I sung all her favourite songs, she touches my face with her tiny hands and we cuddle.
I think she knows I’m upset.
In front of me is a rough black pen sketch that the Paediatrician drew for us, with hands over my mouth I keep on looking at it, trying to make sense of the doctor-scribbled words, lines and arrows.
Our next appointment is with a Paediatric Surgeon, she is going to perform a bowel biopsy on Hunter to determine whether she has Hirschsprung’s Disease.
Before 4pm today I had never even heard of it, and now I feel like it’s the only word I know.
I am so scared for her it’s making me feel sick.
No words will make you feel any better, but my thoughts are with you. X
Thinking of you and Hunter. Xx
Sweetie…try think positive…sending u lots of love xxx
The thought of our babies being unwell is one of the hardest things as a parent. Hopefully after lots of tears and love some positives will start to shine thru. Like someone finally listening to your concerns (be proud u didn’t give up) and when you know what you are dealing with you can do all the right things to help ur precious baby have some relief
hope u got some sleep last night and all goes well x
Lots of love from aunty Abbs & uncle Lew xxxxxx
Took me so long to fall asleep last night but as soon as I did I slept great, hence me feeling so much better this morning! Gosh i’ll have grey hair by the time this is all over. haha
Hunter of course is none the wiser and is as happy as ever – she does make us feel a bazillion times better!
Thank you all for your messages
I am so glad someone finally got to the bottom of it all for you guys! The good news is hirschsprungs is treatable and there is an amazing success rate of recovery in little bubs. As hard as it may be to hear something like that, the good news is they have so much research into the disease now and even in the small 5% of cases that it effects the whole colon they can fix it. There is an amazing support group http://www.bgk.org.au/ that help families and give the added support and understanding. Hope the biopsy goes well, remember she doesn’t have any idea what’s going on so she will be fine throughout the whole thing xxx
Thanks Brooke, like always you are an amazing wealth of knowledge and support <3 We have our appointment with the surgeon on the 6th of Sept, it's going to be a long 3 week wait! xx
First thing… Breath. All will be well. Next thing, know that you are not alone. My 3yr old baby boy was born with HD (full story at our blog, joeycoop.com). Next… knowledge is power. We had to follow the suggestions of our surgeon without any time to gain knowledge. I have a few questions for you
- How old is your child?
- What state do you live in?
A HD biopsy is an non invasive procedure. Your little one will only feel the discomfort of the inserted device, no real pain at all.
We live in NJ and did our research. The best ‘surgeon’, the man with the most HD surgeries is in Ohio, Cincinnati’s Children’s Hospital.
http://www.cincinnatichildrens.org/service/c/colorectal/conditions-treated/hirschsprungs/default/
If your child has HD there are two types of surgeries, Suave and Swenson (one is older one is newer). The surgeon who does the procedure is what will dictate the future of your child’s life. There are of course many other factors, but the surgeon and his/her experience is the most important factor. This all may be a moot point if your child does not have HD.
If your child does have HD, my suggestion is to at least give Cincinnati a call. A local pediatric surgeon is not the person I wanted to perform this type of surgery.
Here’s the good news… We’ve been through hell but life is good today. We have daily poop and I am grateful for every BM.
Reach out to us if you wish.
Best.
Joe
Hi Joe,
Thank you for writing and lending your wisdom and advice, we are actually in Australia!
We have an appointment in 3 weeks time with a surgeon to try and determine whether Hunter has HD or not. Trying hard to not get all worked up and stressed out about it before we actually find out – so hard to relax!
It’s encouraging to hear your story and the now daily BM! One day I will be so grateful for it too.
Will post more on here about our developments,
Thank you for taking the time to write!
Carly