It's 6th September 2018, today we had another cardiology hospital appointment, which has become a routine check-up to see whether she’s gaining weight, still responding to her medication and whether anything needs acting on. Up to this point, we’ve had some weeks with small weight gains keeping her on the same percentile line on her chart and some weeks with no gain. This was another of the latter. At 16 weeks old she’s still in first size and 0-3 clothes!
Our consultant agreed it was time to start making arrangements for her surgery and called the surgeons. We met with a lovely surgeon who talked us through what would happen during her surgery and her post-surgery recovery. It also included the possible complications and risks of the surgery. As I signed the consent papers I had a small wave of sickness come over me but it wasn’t as though we had any other option; she needs the surgery. Now it’s just a waiting game, waiting for the phone to ring to tell us they have a bed available for her and are able to take her in.
Surgery Day (26th September 2018)
We took the call on the Wednesday morning. The next 72 hours felt like a lifetime. We were to take Ava in on the Thursday evening for her pre-op and her surgery was scheduled for the Friday. We tried to keep busy throughout the days leading up to the surgery but it was hard not to think about it. Knowing that there was a small chance of complications or worse at the same time as putting on a brave face for the other two children was tiring. I kept visualising Ava post-surgery being told she was recovering well, it was a way to look to the future. That Friday was going to be the first day of the rest of Ava’s new and improved life.
All was going well, on the Thursday evening we met lots of the medical staff who were to care for Ava both during and post-surgery. It was a little concerning when the anaesthetist told us they may not be able to close her chest up after surgery due to her small size and that doing so a few days later would delay her recovery and potentially increase the chance of complications. We had also been told that due to her Trisomy 21 her recovery would likely be slower also.
Friday arrived and we got to the hospital for 8am. We didn’t want to be waiting around at the hospital while she was in surgery so we had planned to go home and tidy the garage! The time we were told she’d be taken for surgery came and went, we had a hungry little girl that we were unable to feed as we just watched the clock tick by until we were asked to wash her and gown her. At 1.20pm we were then escorted up to theatre. I handed Ava over to one of the doctors as I gowned up and followed them into the operating theatre. It was massive yet filled with so many machines. I waited with Ava as she was put to sleep, the time passed in the blink of an eye and I had to leave my tiny baby girl in the capable hands of the surgical team. We were told it would take 6-8 hours so we headed home. It was much later than planned so tidying the garage was out of the question.
We collected the other children from school, made some finger puppets with them and headed for a quick dinner at the pub. As our food arrived at 5.50pm we got a phone call, only 4.5 hours after carrying Ava into theatre her surgery was finished. All had gone well and she was on her way to PICU. We wolfed down what we could manage with a slightly sicky feeling of anticipation of how we would find her.
Ava's First Christmas (1st January 2019)
With having two older children you almost forget that Christmas is a non-event for a young baby. We’ve been so used to getting up to open stockings in bed, over recent years, before going downstairs for the rest of the presents and bacon sandwiches.
This year was not much different, although Maya and Oscar went to open their stockings in bed with Mamma instead of us (I don’t think they could get us to wake up!) while Ava slept soundly in her cot next to our bed. We got dressed and went downstairs, the other two were excited to open their presents and see whether Santa had drunk his Baileys, Ava was still soundly asleep with the monitor on so we could get her once she awoke.
When she eventually made it downstairs she showed some interest in the colourful wrapping and ribbons. The sensory toys she received seemed to go down just as well with adults and children alike… little sticks with ribbons and bells on were played with by all, along with squishy sensory balls, fibre optic light, an infinity mirror and a silver blanket.
Later that day she had a feed just before dinner, fell asleep and remained asleep while we all ate (not something that I usually get to do!), she woke up just in time for dessert, I think she smelled the custard!! So Ava’s Christmas dinner consisted of a bowl of custard!
Leading up to Christmas Ava had been quite poorly with a really bad cough and cold, I turned into a super paranoid mum, thinking that we could end up spending Christmas in the hospital if she got worse. Thankfully that never happened, and it made the day that bit more precious. I think Ava’s gift to everyone else was her cold!
Ava is developing such a fun personality, and that is something that has been captured by the many photos taken by everyone over the Christmas period. She loves a cuddle, she’ll happily sit with people and has a gorgeous way of just snuggling in. She has a super cute smile (biased, I know!) that often turns into a little bashful grin like she’s up to no good. She’s also starting to gain her strength in sitting up just holding someone’s finger and has found her legs in the jumparoo. These small milestones really are that much more special. I can’t wait for next Christmas with her when she’s a little bit more aware of what it’s all about.
I hope you all had a very Merry Christmas and wish everyone a fun and adventure-filled 2019.