Holly's Diary: 2 weeks and 3 days old

What a busy 4 days it’s been for little Holly, Matt & me! On Thursday night we got a phone call from the Neonatal Unit telling us that the doctors were going to try Holly on BiPhasic SiPap. BiPhasic SiPap is a different type of breathing machine to the one Holly had been on since she was born, which was a tube in her mouth and down her throat which breathed for her, it forced the oxygen into her lungs. Ventilation of that sort actually damages the lungs slightly every day that she is on it, but it was necessary to keep Holly alive. The BiPhasic SiPap machine that the doctors wanted to try only encourages Holly to breathe, so it sends a little puff of oxygen through the mask, which is snugly fitted around her tiny nose, to remind her that she is supposed to be taking a breath as all babies as premature as Holly forget to breathe sometimes.

Although I was delighted that they thought Holly was ready for such a major step forward, I was also very scared and upset that I hadn’t been there when this massive change was decided and happened….. The hospital will only phone you when something bad has happened or is happening so as not to worry you, but Gemma (the nurse looking after Holly that day) knew that I would want to know what had happened so she phoned me anyway, thank you Gemma! Holly was “coming on leaps and, bounds” as the registrar, Lauren, put it and by Sunday the doctors thought she was ready to go onto normal SiPap, this is the really scary one, this one lets Holly breathe entirely on her own. So, if she forgets to breathe then all that happens is an alarm goes off after 20 seconds of Holly not taking a breath and a nurse will come over and rub Holly’s chest to stimulate her lungs and remind her to breathe, this was petrifying for us….. Especially as we had already arrived at Matt’s best friends wedding, over an hours drive away from the hospital, before we found out that they had changed her onto normal SiPap to see if she could manage breathing on her own.

We called the hospital every 30 minutes to see how she was doing, and she was doing really well, her blood gasses (a blood test to see how well she is doing with her oxygen and co2) were coming back fine. So after a few hours of phoning continuously we sat down for the wedding breakfast of tea and cakes and tried to get into the spirit of things. This lasted about an hour before I had an uncontrollable need to leave and get back to Holly, I felt like I was just in the wrong place and that we needed to get back to her straight away. So, at 5.30pm, in the middle of afternoon tea and before the speeches Matt and I congratulated Nathan and Louisa on their marriage and made our way back to Holly. As soon as we got there I had to express milk, so I asked the nurse if Holly was ok and she told me she was fine and to go and express and she would tell me what happened when I got back. When we returned we were told that at about 6pm she got too tired from breathing on her own and her oxygen saturation levels dropped lower than they ever had since she’d been born so they had to start her breathing properly again by putting her back on BiPhasic SiPap which reminds her that she has to take a breath 60 times every minute. That is the first and last time that I will ever leave Holly whilst she is in hospital. Aside from to sleep, which if I could find a way to avoid doing that, then believe me I would. By the time we had got back to Holly she also had a temperature and her heart rate was very high so they were worried she might be getting poorly so they had had the consultant come a check her over whilst we were away to see if she was ok. They put Holly on a higher level of oxygen support to give her a rest to see if they could lower her temperature, and thankfully it slowly started to drop down along with her heart rate.

So Holly is now back where she was on Thursday night, she is on BiPhasic SiPap with a high rate of oxygen. Its astonishing how much one tiny wrong move can make to her progress, but these risks have to be taken because if we didn’t try and take a step forward then everything would just stay the stay the same and Holly would never leave hospital and never be able come home with Matt and me. So sadly, this was one of those 2 steps forwards, 3 steps backwards the doctors kept warning me about that I never thought would happen.

We were at the hospital until nearly midnight last night and were there first thing this morning as it has shown both Matt and I that she is not out of the woods yet, and it is a long time until she will be. How ever, she is stable and still doing extremely well for a baby born nearly 16 weeks early. Richard, the consultant paediatrician, said this morning that is she doing better than he would expect a baby of her age to do, and that it was amazing that she had come off ventilation after 1 week and 5 days, and that maybe who ever had made the decision to put her onto normal SiPap had been a bit hasty. This was lovely to hear as we had been so afraid of getting bad news when the doctors came round that morning. Holly has also been putting on more weight, without the canulas and heavy ventilation tube, she now weighs 775g. She is no longer having to have antibiotics and they have increased the amount of my milk that she is having to help her put on even more weight and grow big and strong.

Some more positive news about Holly is that she got to have her first cuddle with her Daddy. They both loved this time and Matt did not want to put her back into her little bed at all! As soon as Holly curled up on Matt’s chest, she felt so safe that she fell straight to sleep! Her breathing also improved (they actually had to turn her oxygen support down because she was getting too much oxygen whilst with Matt!). Matt finds Holly’s little nose adorable and has been desperate to give it a little kiss so as soon as he got to hold her he snuck in for a little peck on the nose and this made his day. He was over the moon that he got to hold her, and feel the little pitter patter of her feet on his tummy, and feel the warmth that radiates from her. When he was holding her he said to me that it was the most amazing feeling to feel like she needs you, to feel like for those few hours that you have her, you are all that she needs. To feel like you are protecting her and that nothing bad can happen just as long as you have hold of her. I cant wait until Matt and I can go to bed every night and wake up every morning knowing that we can be the ones keeping our daughter safe, not the nurses. They are doing what Matt and I are physically not able to do at the moment and we are eternally grateful to everyone at heartlands, but nothing will feel better than that first night we can read her a bed time story, sing her song and tuck her into her cot in our own home.

We dream of that day every time our heads touch the pillow.

In our room, there is a little baby boy called Jack, he was born 3 days after Holly, at 25 weeks and 2 days. Jack had been doing well for the fist week but is now very very poorly. His mum and dad were told that yesterday that he might only have 24hrs left, and today they have made a decision to give him some steroids, which if they work will most like give him a disability like Cereble Palsy, and if in 36 hours there is no improvement then there is nothing more the doctors can do..... please spare a wish for Jack and his family over the next 36 hours and hope that he turns a corner and pulls through.

(Matt will put the photos from the last few days on here tomorrow - he is to busy working away earning us all a living right at this minute... thank you Matt for looking after Holly & Me xxx)