My failure to thrive baby - Part 2

My failure to thrive baby - Part 2

I think its important that you all get to know me and my introduction to the “medical mum” world which is what has ultimately led to the creation of Mummy Matcher. I wrote “My Failure to Thrive Baby – Part 1” and this blog in September 2019. I was in a very different head-space to where I am at now but its important that everyone have the opportunity to come along for the ride from the start. So here is the second part of our initial “diagnostic journey”.

In my previous post, “My Failure to Thrive Baby – Part 1” I finished with when we were sent back down to Adelaide and met our Respiratory Consultant Dr Declan Kennedy. He was the game changer for us and I am truly grateful for him and the amazing respiratory team at the Women’s and Children’s Hospital.

Dr Kennedy is a gentleman who is probably well into his 60’s, has snow white hair, glasses, I still think he is very handsome man, a hint of an Irish accent and boy does he love a chat. He walks around with a leather binder/notebook which I am sure has been all around the world with him.

He walked in and took one look at Pippa snoozing on my chest and straight away said that she needed an overnight oximetry test (where they monitor the oxygen levels being carried around in your blood while you’re asleep). Some 2q13 kids have a small bottom jaw and he picked up on this within seconds of looking at Pippa which had never been mentioned before. A small bottom jaw causes the tongue to be pushed back and cover the airway, especially when sleeping. He was mortified to hear that she had been coughing for months; he ordered sputum samples, put her on oral antibiotics straight away and rattled off a heap of other medical terms to his registrars who he just loves sharing his knowledge with.

After seeing Declan for the first time we got to go home for a few nights (another 7 hour round trip with my baby that HATED the car ) as the gastro team had ordered a PH probe test (they stick a long skinny tube like sensor down the back of their nose for 24 hours and it can measure the amount of reflux/how high it comes up/acidity level etc) however we had to wait for some reflux medication to get out of her system. Plus we were admitted on a Thursday and I have since learnt that NOTHING happens in hospitals over weekends.

The following Monday night we had the oximetry. Pippa’s oxygen levels had been monitored every night we were previously in hospital as it was the only way we were “allowed” to co-sleep *insert eye roll* and they had never dropped so again I was expecting this test to show nothing.

An oximetry involves a nurse literally sitting at the end of the baby’s cot watching this machine and recording EVERY time the baby moves, makes a noise, snorts, farts, literally EVERYTHING. We had the most amazing nurse, Sam, and she made me go and try to get a couple of hours sleep in the parent room until Pippa’s next feed.

The following morning Sam said she wouldn’t be surprised if Pippa scored herself a sleep study due to her snoring, again I didn’t think much of it. Then respiratory came around and told me Pippa’s oxygen levels were dropping to 75% multiple times a night (optimum oxygen levels are 92ish% to 100%) , she needed to be started on oxygen straight away and she was booked in for a sleep study that night. I asked why this had never been picked up previously, I was told that her desats were too fast for the “normal” machines and they have a 10 second delay (how handy).

 

This is when it hit me. There was something wrong with my baby. I don’t know why it was the oxygen or if it was simply the straw that broke the camels back. I just sat in my little corner and wept. I cried for my baby and the fact that this was not supposed to be this hard! I missed my big girls, my husband and I mourned for the idealistic life I had imagined when I was pregnant with our sweet baby girl who would complete our family.

That night the sleep study confirmed Pippa was having 22ish apnea episodes an hour (this means she would stop breathing); predominantly obstructive sleep apnea (where something is physically blocking the air way) with a few central (the brain forgets to tell your body to breathe) thrown in for shits and giggles. We were lucky because oxygen seemed to manage it really well and that’s all we needed. Her first night on oxygen she put on 100gms!!!

 

I had to do oxygen training before we could be discharged. When I seen the size of the travel bottle, let alone the size of the bottle for home I sat in the corner of the training room and wept quietly AGAIN! How the hell was I supposed to parent/go anywhere/do playgroups/carry her around the house when she was attached to that bloody thing?!

 

But you know what? We just did! Odie (the name we gave to the oxygen) just became like another part of the family. The girls know to be careful of Pippa’s tubes which took a little while and a lot of “BE CAREFUL OF THE TUBES” but they are so good with it all and to them, this is their normal.

I think the hardest part of it all has been adjusting to how people see Pippa. I get it, you see a baby with oxygen and NGT strapped to their face you automatically go to “sick” or premmie and then the pity party starts but this is a conversation for another day!

Unfortunately this hasn’t been the end of our hospital journey, my next blog will be about the “cough that won’t go away” but these were the big life changing moments. It’s either that or I am so used to appointments and hospitals that I have started to become a bit desensitised to it all.

I think the most important thing to emphasise is that through ALL this. Pippa has not once been a miserable, sad, “sick” baby. She charms the pants off everyone who meets her, she’s quite well known through the hospital as the happiest baby alive (as long as Mum is there) and she smiles with her entire face!

She has the most amazing character and the BEST personality. She has taught me to approach life, no matter what it throws at you, with love and positivity. To be in the moment. I’m still learning but I do take a moment every bloody day to be thankful of what I have because if all the time we have spent in hospitals has taught me anything, its that we are one of the lucky ones.

Love Hayley x

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