‘That’ diary entry….
In italics is what I wrote in my diary. The regular text is stuff I’m adding now as I write this
25 August
Ellie is 4 days old and it’s been a full on 4 days!!
Day 1… We got up to the hospital at 8am and started to get prepped for the c-sect.(Ellie was found to be breech at 37 weeks…I think she knew all along it wouldn’t be safe for her to be born the natural way -obviously at this stage we were completely unaware of what was in stall for us!) The duty midwife that was assigned to us was fabulous.
At about 10.15 we were told it was our turn so we walked down the long, quiet corridor to theatre… what a strange feeling it was to walk myself into an operating room. As soon as I got in there I had a few tears, I guess the enormity of what was about to happen had only just hit me.
Ellie was born at 11.01am.
The experience of the c-sect was weird…I couldn’t feel any pain but I could feel the sensation of them touching me (and wiggle my toes) so I kept thinking the spinal wasn’t working. The anaesthetist distracted me by asking about Brenna and before I knew it they were ‘slicing and dicing’. I was surprised with how rough the procedure was, as I was being pushed around quite a bit.
When Ellie was being born J said “She’s giving us a brown eye” because she was lifted out bum first. Once born they took her over and checked her out. At first they thought she had a large port wine birth mark on the back of her head. When my midwife came to ‘break the news’ to me my response was simple “Doesn’t matter” I replied, “her hair will cover it…no biggy.” They quickly realised it wasn’t a birth mark and the paediatrician in the room (who looked about 12) had no idea, so she called in another paed who also had no idea. That paed then called in the Big Boss…he also didn’t know what it was. All this time, I was lying on the table being stitched back up. Each paed was fantastic, they would come and tell me what was happening and admitted freely to being unsure about what was wrong with her. For some reason I was strangely calm (I still hadn’t seen her head at this stage). We were now waiting for a specialist to come and see Ellie. I badly wanted skin to skin, so they put a dressing on Ellie’s head and covered it with a hat and tucked her under the covers with me. I couldn’t stop smiling. She was beautiful!
At this stage we were wheeled into recovery where a dermatologist turned up and diagnosed Aplasia Cutis. I can still hear her words like it was yesterday “It’s going to be a long road”. We were gutted… I’d never seen J cry before and I’ll never forget the horrible feeling in my gut that our life had suddenly changed from celebrating the birth of our 2nd daughter to worrying about her future and the medical procedures that were going to follow in years to come.
The dermatologist has told us that her Aplasia Cutis is a very large one and it should take about 4-6 weeks to ‘heal’ and for the scar to form. Obviously, scars don’t grow hair, so our perfect wee girl is going to have huge bald areas…I feel sick in the stomach thinking about her schooling years (both being teachers, we know how horrible some kids can be to a child who has anything slightly ‘different’ about them.) We’ve been told she’ll have plastic surgery when she’s about 3-4 years old where they’ll insert saline balloons under her scalp and slowly fill them up to stretch her skin that does have hair on it, then that will be pulled over the bald areas. They said that it will then mean she has no bald patches, but her hair will be much thinner in those places… even though this is good news, I still can’t help but feel that it’s not enough. I don’t want my daughter to have ‘thin patches’, I just want her to be a ‘regular’ looking kid. Maybe I’m over-reacting…my hormones are at that horrible 4 day stage so I guess only time will tell if my feelings will change… I honestly assumed I’d have a healthy baby born that would come home on day 2 and we’d carry on with our regular life. What did we do to be dealt this crappy hand??
For the 1st week, we’ve got to clean and dress the wound twice a day.
27 Aug (6 days old)
Well, I keep getting busy so there’s alot more to tell since 2 days ago…
Ellie is in NICU (Newborn Intensive Care Unit). On day 2 (up in the ward) she stopped breathing. She was rushed off and given oxygen and had heaps of mucous suctioned out of her. She started breathing again but was very unresponsive so they took her down to NICU. She was incubated and had a nasal gastric tube put in. There were wires everywhere and needles in her hands. It was such a horrible sight but deep down I knew she was being well cared for. The blood tests that were taken were sent away to check for a possible infection from the ‘wound’ on her head. The paed also wanted to check for any chromosomal abnormalities and he’d only seen Aplasia Cutis in children with syndromes. We have to wait a whole week to get back the results (they came back clear – phew!!)
This must have been where I just got too busy and ‘over it’ in regards to writing about what we were going through. It was such a surreal experience. We asked for no visitors as we were finding it hard enough to come to grips with trying to understand about Aplasia Cutis that we couldn’t face having to answer well meaning questions about her situation. We are so thankful to all our friends and family who respected our decision and gave us time to accept what was happening and for things to settle down before coming to see us. Because of this though, it was such a different feeling compared to when Brenna was born. After her birth, we were inundated with visitors and there was excitement all around. This time, there were lots of tears and quiet time spent with just J, myself and Ellie. It was hard on Brenna because she wasn’t allowed down in NICU as she was under 3 at the time so when she came to visit me at the hospital, she’d ask where the baby was… very confusing for her!
If you’re still here and haven’t given up reading my looooong post….thank you. There are more tales to tell, but that can be for another day….
Me xo
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