It was the last day of April when we were finally allowed home. Winter was already on its way, and we had spent the last days of summer and most of autumn tracking back and fowards between Ronald Mcdonald House and the Neonatal Intensive Care Unit. It was the weirdest thing to sort of miss an entire season. I was meant to have a March baby, that's how it was planned, everyone knows newborns in May are no fun. But here I was, heading into Winter with a special needs, delicate, tiny baby with frail health who weighed a fraction more than my son had at birth. Brooke had been home for almost excactly a month before she was admitted to the paediatric ward for a virus that caused bronchialitis and she was back on oxygen. Much of our first year home with Brooke was like this. We would wait till she was sick enough for hospital, and take her in, and wait for her to be well enough to come home, then wait for her to get sick again. Ward 22 became our second home, Ronald McDonald House our sanctuary after numerous days with sleep constantly interruped by Brooke's coughing and vomiting. Big brother Ollie was a new entrant at primary school and germs seemed to stick to his school bag, and under his fingernails, and just lurk in the house waiting to infect my baby girl.
As if that wasn't enough she was on a hellish feeding scedule. She had her naso-gastric tube in so we couldn't leave her alone during feedings in case she pulled her tube and aspirated. She was on her pump feed for 90 mins then off for 90 mins then on again, all day, and all night - with up to 4 bouts of projectile vomiting during and between feeds.
During Brooke's 3rd month she had her follow-up ABR hearing test. She failed. My little baby was deaf. I sort of knew; it wasn't a total shock. Her ears never did start to look right and Mum and I had talked about it and clapped about her head a few times and gave each other meaningful "oh dear, that's not good" looks when she failed to respond in the slightest.
Just another thing to add to the "problem list".
The problem list changes all the time; it's hard to keep up.
At this stage it said things like:
Repaired VSD
Dysmorphic Features
Large cleft palate
NG tube fed
Micrognathia
There were maybe 10 things on the list at that stage, add to it failed ABR.
She was fitted with bone conduction aids on a non elasticated head band around a month later. It fell down all the time rendering her blind as well as deaf. Poor child. She preferred to chew on it more than have it on her head so it was removed quite often. (Much later we learned that it was not doing much good for her in terms of improving her hearing, so the guilt from not making her wear it constantly went away.)
6 months came around: she was almost 5kg now, that was her weight goal to have her gastrostomy operation to insert a feeding tube into her tummy, thus removing the need for her horrid nasal gastric tube. A very exciting time for us. The tube was becoming more of an annoyance for Brooke as she was getting older. She was pulling it out more and her little face was always irritated by the tape. The biggest pro of this (from a purely selfish point of view) was that the tummy tube meant we could feed her continuously overnight so no one had to do the 90 min feed watch 3 times during the night. When I thought of the prospect of sleeping for possibly 6 or 7 hours straight while the machine did its job it felt like Christmas, only 100 times better!
She recovered well from the surgery itself and was less irritable once the tube and tape were off her face. It was an adjustment getting used to her new look, as we had only had brief glimpses of her whole face during tube changes before. The reflux continues to be a problem and she is still not orally feeding. At 6 months she is not rolling, but I'm not too worried, she has had a lot of setbacks and there is time to catch up. She is very much like a 3 month old and there is a little personality starting to wake up in there she's started to smile!
As if that wasn't enough she was on a hellish feeding scedule. She had her naso-gastric tube in so we couldn't leave her alone during feedings in case she pulled her tube and aspirated. She was on her pump feed for 90 mins then off for 90 mins then on again, all day, and all night - with up to 4 bouts of projectile vomiting during and between feeds.
During Brooke's 3rd month she had her follow-up ABR hearing test. She failed. My little baby was deaf. I sort of knew; it wasn't a total shock. Her ears never did start to look right and Mum and I had talked about it and clapped about her head a few times and gave each other meaningful "oh dear, that's not good" looks when she failed to respond in the slightest.
Just another thing to add to the "problem list".
The problem list changes all the time; it's hard to keep up.
At this stage it said things like:
Repaired VSD
Dysmorphic Features
Large cleft palate
NG tube fed
Micrognathia
There were maybe 10 things on the list at that stage, add to it failed ABR.
She was fitted with bone conduction aids on a non elasticated head band around a month later. It fell down all the time rendering her blind as well as deaf. Poor child. She preferred to chew on it more than have it on her head so it was removed quite often. (Much later we learned that it was not doing much good for her in terms of improving her hearing, so the guilt from not making her wear it constantly went away.)
6 months came around: she was almost 5kg now, that was her weight goal to have her gastrostomy operation to insert a feeding tube into her tummy, thus removing the need for her horrid nasal gastric tube. A very exciting time for us. The tube was becoming more of an annoyance for Brooke as she was getting older. She was pulling it out more and her little face was always irritated by the tape. The biggest pro of this (from a purely selfish point of view) was that the tummy tube meant we could feed her continuously overnight so no one had to do the 90 min feed watch 3 times during the night. When I thought of the prospect of sleeping for possibly 6 or 7 hours straight while the machine did its job it felt like Christmas, only 100 times better!
She recovered well from the surgery itself and was less irritable once the tube and tape were off her face. It was an adjustment getting used to her new look, as we had only had brief glimpses of her whole face during tube changes before. The reflux continues to be a problem and she is still not orally feeding. At 6 months she is not rolling, but I'm not too worried, she has had a lot of setbacks and there is time to catch up. She is very much like a 3 month old and there is a little personality starting to wake up in there she's started to smile!
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