Caring for Amy
Amy Louise Brayley-24/03/11 by Penny and Mike
I read somewhere the other day “enjoy the small things in life, for one day, you will look back and realise they were the big things”.
This definitely applies to living with a baby as special as Amy, and we do our best to savour every precious moment.
When I first found out I was pregnant, it was a total shock, as my doctor had told me I would probably find it very hard to ever become pregnant naturally because he suspected I had polycystic ovaries. My partner, Mike, and I had discussed children and decided that neither of us really wanted children anyway, so it wouldn’t be an issue. However, once the initial shock wore off, we decided that we would continue with the pregnancy as we couldn’t bear the thought of the other option!
My pregnancy went pretty smoothly, with only a couple of weeks of feeling sick at the beginning. I decided not to have the Down’s syndrome test, as I was only 30 and the midwife said I didn’t have a very high risk anyway because of my age. We also thought it would be too hard trying to decide what to do if we found out we were having a baby with Down’s. I went for a routine check-up with my midwife at thirty-two weeks and told her I was concerned that I didn’t even look pregnant considering how far along I was. She decided to send me for a scan the following week to check everything was ok.
As soon as the sonographer said she needed to get a second opinion, we knew something was wrong. They told us the baby was very small and there was a problem with the blood supply from the placenta. They kept me in from that day and informed me the baby would be delivered by caesarean section that week as it was also breech and its heart probably wouldn’t survive a natural birth anyway. I cried all night that night in the hospital. On Thursday 24th March, Amy was brought into the world at half past four in the afternoon. After just a little whiff of oxygen, she breathed for herself. She was quickly whisked off to SCBU, after stopping on the way past me so that I could catch a glimpse of her and touch her tiny little hand. Words can’t describe how I felt that day....
Mike and I didn’t take long to decide on a name for her, as Amy was one of the names we both liked and we thought how much it would suit her, being such a small name for such a small little girl! I wasn’t allowed to go and see her until I had the feeling back in my legs from the anaesthetic, which annoyingly didn’t happen until about eleven o’clock that evening. Mike helped me into a wheelchair and off we went to SCBU to see our precious baby girl.
We were told she weighed just two pounds eleven ounces, yet although she was so tiny, she looked so perfectly formed. The nurse took her out of the incubator and placed her on me. She wasn’t much bigger than my hand and I was so afraid I was going to hurt her. From that moment I knew I loved her with all my heart and would never let anything happen to her. When Amy was a couple of days old, one of the doctors took us into a separate room and said he had some concerns that she may have a chromosome defect. He explained it may be Edwards’ syndrome but told us not to look it up until we had the blood test results back a few days later. Naturally, we went home and looked it up and just prayed they would be wrong. I’m not a religious person but I have found myself praying to God a lot since March!
The results came back positive for full trisomy 18 and we went home and cried so much, I thought I would never stop. It really felt like someone had ripped out my heart. My beautiful perfect little girl had this terrible thing and there was absolutely nothing I could do to take it away from her. It’s hard to describe all the feelings I had, and still have sometimes. At first, I naturally felt it was all my fault and I must have done something to cause it. I was assured there was nothing I could have done to prevent it happening as it was just “one of those things”, which wasn’t really any comfort. I also felt a huge loss, like I had not only been robbed of going into labour and giving birth naturally, but also we had been robbed of the healthy baby we had expected and assumed we were going to have. Then I felt guilty that I had not been able to give the rest of the family the baby they had been so looking forward to. I think I felt I had let everybody down!
Mike and I agreed that we would try our hardest not to get upset about it around Amy because she didn’t know any different and it was up to us to make her every minute special and happy. So we pulled ourselves together and decided to do whatever we needed to for as long as we had her. Meanwhile, as Amy was so small, their main concern was that her gut hadn’t developed enough to tolerate milk, so they had to start feeding her with half a ml of milk every hour, by OG tube and gradually, day by day, build up from that. Obviously, Amy wasn’t getting enough nutrition from such a tiny amount of milk so they had to insert a long line up through a vein in her leg to give her some TPN (Total Parental Nutrition) which contained all the calories etc she needed.
The doctors warned us she wouldn’t survive long but, on the whole, they all treated her with as much respect as any other special care baby. There were a couple of doctors who seemed to have given up on her as soon as they read the ‘label’ which was attached to our precious little girl, but thankfully, we didn’t see too much of them! Amy spent ten weeks in SCBU with frequent apnoea episodes and even needed cardiac massage twice and two blood transfusions. We got her christened while she was in there as it sounded like we wouldn’t ever get to take her home. However, after giving us lots of training on resuscitation , using different equipment and administering all her reflux medication and tube feeds, they asked if we would like to take her home. She was just under five pounds then and we were absolutely terrified. She had one apnoea episode on our way home in the car and it was so nerve racking, but once she had a few more at home, we became more and more confident about managing them.
Oh, has Amy bloomed since then-what a true fighter she is! She had to go back to hospital in July, with a chest infection and then to Bristol in August for a hernia operation. The ENT people also looked down her throat while she was under the anaesthetic and discovered she has a floppy larynx, which is a big cause of her funny breathing and also, because her jaw is set back a little at the bottom, her tongue probably causes a bit of an obstruction when she sleeps. If she gets a cold, she really suffers with her breathing as a result of all of that and her tiny tubes! The doctors put Amy on continuous feeds in July, after a sleep study showed she was having most of her episodes around her feed times. Mike and I weren’t keen on the idea at first, but what an amazing difference it has made to Amy and us! We actually get a little bit of time to do other things in a day now, rather than spending all day fighting apnoeas and projectile vomit! She is twenty eight weeks old now and weighs a huge ten pounds!!! What a porker!!
Mike and I are generally, severely sleep deprived because Amy’s saturation monitor goes off quite regularly most nights and we have to keep getting out of bed to reposition her, but it’s all worth it when she is awake, because she is such a happy little girl! I could never tire of seeing her gorgeous smile, the way her whole face smiles-not just her mouth! She is absolutely beautiful and we feel truly blessed to have been given the opportunity to have such a special little girl. If there is one thing I have learnt from having Amy, it’s not to take anything for granted. Every moment is precious even in the middle of the night when she just won’t go back to sleep or her SATS keep dropping so you have to stay up all night to keep moving her to keep her breathing properly. Sometimes, I just sit there watching her tiny little mouth making sucking movements in her sleep and I feel like I want to bottle this moment, and the overwhelming feeling of love I have for her, so I can keep it forever.
We try not to think about the future too much and live each day as it comes. Every tiny little thing Amy does is a blessing and a real achievement, like when she opens her hands out wide, or follows us with her eyes, or totally relaxes when we put her in the bath, or, my favourite thing, when we smile at her and she smiles back!