Home sweet home.

Holly was in hospital for 102 days. 14 weeks and 4 days. 3 and a half months. She has been home for exactly one month today (28^th march (it has taken me a while to finish off the post and it is now 11^th april and she has been home for 6 weeks) and it has been amazing to say the least…….

Apologies for not writing sooner, we have been very busy bees. The last time I wrote we had not long been transferred to Warwick hospital, since then things changed quite rapidly. Matt and I were allowed to be a lot more involved in taking care of Holly and we were allowed to have out of the incubator for a cuddle when ever we wanted, we didn’t have to ask permission to hold our baby! This meant that every single waking moment was spent at the hospital, most days from 8am or 9am until 1am or 2 am the next morning, we popped home for lunch and again for dinner which probably accounted for an hour and half of our day, but it was impossible too leave her now that were allowed to behave as if she was actually ours, we finally started to feel a little bit like we were parents for the first time. So we did everything from preparing her milk to giving her medicine, changing her sheets… lots of very regular mundane things, but these just made us finally feel like we were actually of some use to Holly, that she needed us, which was lovely.

We also had a few ups and downs over the weeks in Warwick hospital, she started having quite serious episodes of bradycardi (where a babies heart rate drops below 60bpm) this would be like an adult have 30 or  less heart beats on average every minute. The scary part was that they had no idea why this had suddenly started and weren’t being very successful at making the problem go away. Quite often the pauses in-between each one of her heart beats were so long that her “critical” alarm would go off, and there were a hand full of times that it alarmed that her heart had stopped all together, these events were indescribable – seeing the number 0 on your baby’s heart monitor is a moment you never forget, but spend every sleepless night wishing you could. Holly also had an extremely bad reaction to some medication they used to dilate her pupils, she spent about 24 hrs needing to be given oxygen because she continuously stopped breathing, a reaction that has been seen in premature babies on a number of occasions, so I often found my self asking why they would give Holly (at only 32 weeks – so she should still be in my belly for another 2 months) a medication that is known to cause such a horrendous reaction in full term babies, even children as old as 8 yrs old!? But, as with everything they do for prem babies, they is always a bad for every good that they do, and quite often the risk is necessary, in this case it was to ensure that Holly would not grow up to be blind due to her prematurity. It doesn’t make the pill any easier to swallow though.

Any way, all that matters is all the problems we have encountered on our journey have slowly but surely disappeared, and we have a beautiful, healthy baby girl sleeping right next to us in her mosses basket. In her home. Where she belongs. When this roller coaster started, and I went into labour 16 weeks early, I spent every day wondering what I had done to deserve this? Why do Matt and I have to endure the pain of seeing our little girl in an incubator hooked up to numerous machines? Why is it that my baby girl has to be put through this when so many other little babies get to go home, healthy, with their families just a day or two after they’re born? Then one day, I'm not sure when, but I realised why. It was because she was born to do it. She was strong enough and brave enough to keep fighting every single day. I had a little miracle growing inside my tummy, she knew it all along, but we weren’t allowed to know until she was ready to show us exactly how special she was. We weren’t cursed, we were blessed. So many others (75% infact) do not have the same story to tell as me, there’s unfortunately does not have a happy ending.

Matt and I are the proudest parents ever, we never imagined that our story would end in this way, we believed many times along this journey that we were going to loose our baby girl. But we never did. She has amazed her dad and me every single day with how determined and strong she has been. Much much stronger than Matt or I have been able to be. There were many tears shed over the 102 days she was in hospital but not once did  Matt and I fight…… we were there for each other when life got tougher than, even in your wildest nightmares, you could imagine it to be. Matt never left mine or Hollys side once, he stayed strong and rational, when I was anything but. Sorting out the purchase of our new home, the sale of our old home, keeping his business up and running, earning a living to support the three of us… all of this whilst changing his 1lb 7oz baby’s heart leads, her oxygen probes, cleaning her ventilator tubes, changing her nappies…. If ever there was an example of what a true father and husband should be, Matt would be it. He has become the Father and husband I always dreamed he would become, Holly and I are 2 lucky ladies, that’s for sure.

Holly is now 5 months old, weighs just over 8lb and has no eye sight problems, no heart problems and no breathing problems. She eats like a little piggy and has just started giggling and smiling and is very nearly sitting up on her own… a few more weeks and I’m sure she will have it nailed!

Thank you for reading all about our life over the last 5 months…. I wish anybody who is going through the same or similar situation all the luck and love in the world.

All our love,

Matt, Jenni & Holly 

xxxxxxxxxxxxxxxxx

8 weeks & 4 days old

Holly is the most amazing and strong baby girl I have ever known. She astounds the doctors and nurses with her progress nearly every single day. Her ability to learn new things and conquer all the problems she faces completely astonishes me, she is stronger than I ever believed possible, and in turn Matt and I are luckier, and prouder, than either of us had ever imagined we would be given the chance to be.

I say we are lucky, how ever I don’t think luck really has much to do with it. Holly is an entity unto her self, she has so much fight in her that she doesn’t really need luck….. Plus she has an enormous amount of love surrounding her, and so many people from all walks of life wishing her well that I’m sure if love were water, she could fill all the oceans in the world (and probably, knowing Holly, swim the backstroke!).

The three of us have now moved onto our third and final stop before home. We are in the Special Care Baby Unit (“scbu” as they refer to it) in Warwick, which is wonderful, not only as it means we are nearly at the end of this long, mentally exhausting journey, but we are only half a mile away from our baby girl, even when we are asleep! Half a mile may seem like a long way for other mums of new born babies, but to Matt and I its so close that it almost feels like we could look out of our window at night and see into hers (obviously we can’t, but we can pretend!). When we first arrived at Warwick Hospital, we were allocated a private room in case Holly had picked up a bug or infection from Coventry or on the journey, and we had to wait 48hrs for her test results to come back clean before the nurses would stop wearing gloves and aprons to touch Holly. Having our own room was so wonderful, it felt like our own little private home away from home (however saying that, where ever Holly is feels like home to me) it was so lovely for it to be just the 3 of us all the time and not have to share it with other mums and dads - don’t get me wrong, I’m not being anti-social, its just nice to have some privacy with our baby for the first time in 8 weeks.

Holly has now been off oxygen support since 26^th December, before she was even 30 weeks gestation! so 3 weeks and 1 day ago she started breathing all on her own for the first time (apart from the occasional few hours here and there for the first few days) and considering she should still be in my tummy getting her oxygen through the umbilical cord for another 10 weeks, is an amazing feat! The doctors say to Matt and I that it is “amazing” that she is breathing all by herself at such a young age and the nurse explained that they would generally expect a baby born at Holly’s age to still be on CPAP (the mask over nose) until around 35 weeks gestation….. She is also learning to breast feed at the moment, she had her first attempt 2 weeks ago (at 31 weeks gestation) and managed to feed for a good 5 mins. Again, she is not supposed to be even thinking about doing this until around 34 weeks, and the nurse that helped me described Holly as a “little marvel” for being able to learn to breast feed at such a young age. She has since managed anywhere up to 10 mins, but she gets tired easily and just falls asleep, very contented with her achievement!

I am currently at home, hibernating, due to the fact that I have the most mundane and irritating of ailments…. A cold! This means that I cannot even see my baby girl until my symptoms have gone, let alone hold her and kiss her. I have considered every option: pretending to the nurses that I feel better and hoping I can mask my coughs and sneezes long enough to visit her or popping in for just 10 mins to look through the incubator at her and tell her I love her, and finally just thinking “sod it! I’m not going to miss a second of my baby girl growing up just because of this stupid, lingering cold". Then, after getting ready to leave the house, I realised that I was doing it for me, not for Holly, and that was selfish. Surely I could manage just a few days of not visiting if it meant I wouldn’t give Holly my cold (a cold to Holly could mean that she could have to be in-tubated again and go back to intensive care, and could literally be life threatening, as Matt and I both witnessed in Coventry). Besides, Holly has THE BEST daddy in the whole world, and as long as he is looking after her, that puts my mind at ease. So I am currently sitting at home, going through my second box of Kleenex (menthol scented btw – amazing when you have a blocked up nose!) feeling very jealous and sorry for myself that Matt has spent the last three days with Holly with out me, but he has put all of his newfound parenting skills to good use! And I have to say he has surprised me and surpassed my expectations…. Even I can’t figure out how to put a baby grown on little Holly inside the incubator with all the wires by myself, but some how daddy Matt can!! He’s a lot braver than me when he has been having her out for a cuddle as well…. holding her with one hand and reading her a bed time story with the other… He’s such a good daddy and has been really enjoying his alone time with Holly, which is lovely really as I often get alone time with her when Matt has to go and work at home.

I cannot explain how amazing it is to have a little girl as wonderful as Holly (I’m sure every parent feels that way about their child, but I guess not every one starts their parenthood not knowing if their baby will survive). I’m lucky in a way, because every up and down that we have been through means I will never take what I have for granted. I realise, and have seen first hand, how amazing it is for someone to just be able to do something as simple as breathing in and out, to learn that basic human function is exhausting and enormous for a baby, but you usually don’t witness it, it all goes on inside your tummy, and it makes you realise just how amazing we are as human beings, how we rely on our bodies to automatically know what to do… they don’t. It has to be learnt. As I have watched Holly do for the last 2 months.

x

Holly after Daddy had put her a fresh new nappy on her bum.

Holly with dumdum.

Holly laughing at Daddy.

Holly's reaction to Daddy's singing.

all tucked up.

Holly on Daddy's chest having a cuddle.

The last three weeks in photos!

Hollys first day at Coventry University Hospital.
Still on CPAP and with the addition of ECG leads.

Holly on "High Flow" oxygen. The first time we saw her whole head!
Look at all that hair!

Holly with Rabbit and her dummy.

Hollys pretty face getting some beauty sleep... not that she needs it!

Holly on "Low Flow" oxygen looking a bit confused!

Hollys tiny footprints.

Hollys first Christmas.

Holly loves her dummy!

Holly in her pretty hat made by Aunty Lisa.

Holly breathing all on her own! Look at those chubby cheeks!!

Happy New Year

Sorry its been a while, we’ve been a bit busy…..


Holly is now 6 weeks and 6 days old 
(31 + 2 weeks if she was still in my tummy!)

On the 16^th December Holly was moved to the Neonatal Unit at University Hospital in Coventry, it was a very scary journey knowing that she was so fragile and tiny and not having the comfort of being inside the hospital walls with access to everything and anything the doctors and nurses could need in an emergency. Non the less, we had to be moved as Holly was considered stable enough to be taken back to “her trust” of hospitals (basically, due to the fact we live in Warwick, we should have been looked after by a hospital in Coventry or Warwickshire, but there were no beds available at the time so we were taken to Birmingham).

The transport team arrived in the early afternoon and we had to leave the room whilst she was being transferred from her little home inside Heartlands incubator, into the transport incubator. She was strapped down inside there as the journey would be a bit bumpy, and then covered in about 5 blankets to make sure she stayed warm. Matt and I had one last look at her before she was taken off into the ambulance to be driven to Coventry. Neither of us were allowed to go into the ambulance as there had to be a doctor, a nurse and 2 ambulance drivers in there with her incase of an emergency on the way, which I wasn’t going to argue with as I wouldn’t of been able to help had anything have happened along the way, but it was still difficult to watch her go knowing she was in an ambulance, away from our safe environment at the hospital, on the road with every man and his dog driving like god knows what and just hoping that she gets there ok.

It took us nearly an hour to get from heartlands to Coventry, due to traffic, and when we arrived Holly had been allocated her little spot, one space down from the window, and all the doctors and nurses were fussing over her and getting her hooked up to all her monitors and breathing support and weighing her and taking her temperature etc….. it was quite scary to see all these different people surrounding her that you hadn’t met before, how could you be sure that they would treat Holly well or that they would keep her as safe as heartlands? At that point in time Holly was having a problem with her heart, her rate kept dropping to half its normal beat and then picking back up again… a few minutes later it would do the same…. This hadn’t happened at heartlands so something must have happened on the journey, or since she had arrived at Coventry hospital, these new people must have done something to hurt her! They took some ECG readings from her (in-between me shouting and cursing at them; bursting into tears because they had done this to her) and they noticed that she had an ectopic heart beat, this had been seen at my last ultrasound as well but we had forgotten about it because of all the stress of Hollys arrival and Heartlands hadn’t picked it up from my maternity notes and didn’t monitor Hollys heart rate as in-depth as Coventry does. So all my worry was over something that Coventry had only identified not caused, which was a good thing (ignorance is most certainly not bliss in this situation – even though it has given Matt and I one more thing to worry about) because it meant that they were on the ball and looking at the full picture of Hollys health (heartlands were fantastic too, but just had not picked this up for some reason) and can make fully informed decisions about her medical treatment.

The rest of the night was difficult as there were new nurses to meet and build relationships with, new doctors to understand and new mini neighbours for Holly to make friends with (on that note, little baby Jack responded well to his steroids and was doing just fine the last time I saw him – I am no longer able to be updated on his progress as it is confidential to his family and I am not in touch with Jacks mum or dad now that we have left the hospital, although Holly did manage to send Jack a Christmas card!). We stayed late that night and tried to settle into our new home for the coming months.

Since then a lot has happened…..

Holly stayed on her CPAP for only a few days before they tried her onto “high flow” oxygen, this is where she just has a tube across her face with 2 little prongs sitting her nose pushing air into her lungs to make sure they never fully deflate to make it easier for her to breathe. She started off having 5 litres of oxygen and then every day they turned it down by 1 litre until she was at 2 litres. The doctor then made the decision that she was ready to go onto “low flow” oxygen, this doesn’t give any pressure into her lungs, it is the same type of machine as “high flow” (the little nose prongs) but just blows extra oxygen for Holly to breathe when she takes her own breaths, she lasted on this for about 1 hour…… she didn’t need it, she was breathing all by her self no oxygen needed, no pressure needed, she was just like every other baby, breathing in and out with no mechanical help what so ever! This enormous step forward made it feel like I had suddenly remembered how to breathe again as well, it was like a weight had lifted from our hearts, it gave me and Matt confidence for the first time that our little baby girl will one day come home with us…. We can see the light at the end of the tunnel…finally.

Holly is doing so well and just keeps moving forwards, she is having more and more milk now (it is fortified – this means they add a special powder to it which gives her more protein and calories to help her gain weight) and gaining ounces every week – she now weighs 1.03kg (2lb 4oz) and her cheeks are getting chubbier by the minute! She sometimes needs a little bit of oxygen in her incubator (but no machine attached to her – it just gets pumped into the actual incubator) but this is only between 1-2% and for around 20hours of the day she is just breathing the same air as you and me.

I will try and keep you updated a bit more regularly now that the move/Christmas/new year is over, but I can’t promise anything!

I might not get the pictures & videos up tonight but I will put them on here as soon as possible as I am dying to show you how much she’s grown and how beautiful she is looking…. Matt and I are arguing over who she looks like more, I think she is looking more like me and of course Matt thinks she looks like him, let me know what you think when ive put the photos of her up.

Thank you again to everyone who is following the blog and thinking of Holly, it is amazing the support we have had from total strangers, old work colleagues, parents of friends, friends of parents, even shop staff! and of course all of our family and friends….. Thank you. From the bottom of our hearts x