3 weeks and 4 days old

I haven't felt this scared since the first few terrifying days after she was born. 

Yesterday was a very difficult day but I will bring you up to speed with the rest of her progress before we get started on yesterday.  Since not being able to manage on CPAP and going back onto BiPhasic CPAP she has struggled with her oxygen saturation in her blood. This is most likely just a coincidence as all swapping ventilation will have done is made her a bit more tired for a little while, and they increased her oxygen when she went back onto being assisted to give her a bit of a rest anyway. None the less, she has been struggling more than usual since then. Over the week, she managed to reduce her supported breaths from 60 per minute to 30 per minute and her oxygen was pretty stable at around 30% so the doctors continued to be very pleased with the way she was progressing, she was even managing to breathe entirely on her own for a minute or two when they changed her mask or took her out of the incubator to bring her over for a cuddle with me. Seeing as were talking about her mask being removed I will tell you all about seeing her little face for the first time..... obviously we can see some of her face all the time, but we have never seen the whole of her face all at the same time as she firstly had a tube covering her mouth, now she has a mask over her nose, and she always has a hat on her head covering all the way to her eyebrows, and sometimes even that falls down over her eyes! Due to the fact that Holly has got a little sore underneath her nose from the oxygen mask rubbing her skin, they have to put little plasters round her nose to create a barrier to let the sore heal, this needs to be changed every so often and we got to see the nurse doing this one day. She took the mask off and at first I didn't really realise that I hadn't seen her whole face before and then as I was looking at her, wandering how she could have all these little squidges and squadges from the ties on her hat keeping her mask tightly in place and still look like the most beautiful and perfect little girl I have ever seen, it clicked that this was the first time I, or Matt, had seen her face. I mean REALLY seen her face. Although all you may be able to see when you first look is the little dents in her face (which will smooth back out when she doesn’t need the mask anymore) and her funny shaped head, and squashed nose, there is so much more there when you really look.... like her beautiful big eyes and her little nose, and lovely mouth and cute chin and ears.... look past the unusual things that you wouldn't normally see and you will find the most adorable & perfect baby girl looking back at you (even if it is only with one eye sometimes!).

Yesterday.

When we arrived, Matt and I both felt unsettled but we couldn’t really find a reason why. I knew some how that Holly wasn’t ok. As the day continued lots of different things started to go wrong….. when I changed her nappy that morning I noticed she hadn’t dirtied it, and remembered that she hadn’t when I changed her the night before (our Holly bean is normally a poo machine!!) so this was very unusual, I mentioned it to the nurse who didn’t seem very concerned and said she would keep an eye on it. Later on when the doctors came to examine Holly, they noticed her belly was fuller than usual but just put it down to being on CPAP and air getting pushed into her belly, this an unavoidable side effect of ventilation unfortunately. She then started to have apnea again, which we thought she had left behind her a few days ago, this is where she stops breathing completely and needs to be stimulated to get going again (by rubbing her chest or giving her belly a bit of a squeeze) but seeing your 4 week old daughter stop breathing and turn blue is the scariest thing I’ve ever witnessed. I imagine I went a shade of blue at that moment myself as my heart stopped beating for a moment until I saw her tiny body start wriggling around and she threw her arms up above her head like she loves to do! As if she is in the middle of a Mexican wave at a football stadium somewhere! They warned me that this could happen (the apnea, not the Mexican wave) often through out her stay in hospital so its something I will have to learn to get used to….. not likely. She struggled with her breathing for the next few hours, and they decided to do an x-ray of her lungs as they thought maybe part of one of them had collapsed. Thank god that wasn’t the case. How ever this still left us with no answer. They did a blood test to see if she was expelling her co2 effectively, which she wasn’t. She had another blood test done to check to see if she had an infection, which she didn’t. The doctors did a final blood test to see if she had become septic, which she hadn’t. They did see that her pH level was too low how ever, as well as her co2 being high, these 2 things combined mean she may have to be re-intubated (have the breathing tube back down her throat) as she isn’t breathing effectively enough on her own.

At some point in the evening a doctor came back round to see us and asked about her bowels, and if she had had a poo during the day, which she hadn’t. He explained this might be causing her belly to restrict the amount of room her lungs have to expand and cause her difficulty breathing. They made the decision to give her more caffine (she already has caffine every day to keep her brain stimulated to ensure she remembers to breathe), reduce the amount of milk she was having to stop her tummy getting too full, and give her a suppository to get her bowels moving again to try to empty what was in her full little tummy and see how she was in the morning. So, she is now on 40% oxygen and a rate of 60 breaths per minute supported, so quite a big step backwards and an unidentified problem with her breathing. This made for a very hard day.

That night, when we eventually got home, we phoned the hospital before we tried to get some sleep and they told us she was doing a lot better, everything was sorting it self out and she was getting back on track. She was still in high oxygen, and on supported breathing but wasn’t having any apnea and her tummy had gone down a bit. This was good news, it meant things were moving forward again and our little Holly wasn’t going backwards, she had just stopped moving forwards for a little bit and stood still. She is already so far ahead of where the doctors thought she would be at this stage that I think we can give her a break, and let her off for that little scare she gave us all for the day……

x

Holly with her eyes open and nothing covering her cute little face!

Holly's head of hair (she has a plaster round her nose)

Holly and Daddy having a cuddle

Holly keeping an eye on Daddy!

Holly waving her fist at Daddy, telling him what for!

Holly's pretty little face

Holly winking at the doctors!

3 weeks old

the first time Holly opened her eye
(she is yet to open her right eye!)

Holly & mummy

Holly & mummy

little Holly grabbing mummys finger tight

Holly's cute little chubby cheeks

all dressed in pink

Holly's first ever dress

Holly is 3 weeks old today - Happy 3 week birthday Holly!!!!

I will add Holly's newest blog asap but thought I would let you have a sneak peak at her latest snap shots!

x

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.

x

(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)

Holly getting her first kiss of many from her daddy  

another kiss from her daddy

 Holly & her daddy having their first cuddle