1 week & 5 days old

Yesterday we got to have Holly out for a cuddle again, it wasn’t as scary this time as I knew she had been ok last time. I just enjoyed every second instead of worrying about whether or not she was safe. It’s a horrible feeling not knowing whether you baby girl will be safe when she’s snuggled up in your arms, surely that’s supposed to feel like the safest place in the world? With Holly however, it was the scariest moment so far. Matt wanted to hold her yesterday but they said its best for mum to hold her for the first few times until they know she can handle being out of the incubator well, so that was difficult for Matt as he had been talking about holding her all morning, but hopefully soon he will be able to wrap his arms (well his fingers as she’s so small!) around her and give her her first cuddle from him. There is no safer place that I can think of than in her daddy’s arms, as there is no place in the world that I feel safer than when I am with him. He has been amazingly strong through out everything we have been through on this journey so far and Holly and I would be utterly lost with out him. He is the rock of our family and I love him immensely.

Holly has been taking lots of steps forwards and a few steps side ways the last few days. The lowest weight she has been is 688g, this was yesterday’s weight. Today she weighed 760g which is amazing! She has gone onto having just my milk instead of the IV drip so this will be what is helping her gain weight, she is not quite her birth weight (even though she weighed exactly 760g when she was born) as she had 3 cannulas in her when she was weighed this morning and these all weigh a tiny bit, but it is still a massive step forward that she has gained so much and hopefully will continue to do so now that she is on entirely my milk. She is back on antibiotics again as they think she has got another infection from having the “long line” (for her IV food drip) in her for so long, but now that they have taken that out as they no longer need it due to her having my milk it should clear up quickly. This should also help with her hyperglycaemia, as your blood sugars tend to rise when you have an infection, so hopefully once the infection has cleared up she will be able to come off the insulin drip and have another tube out of her! She also has high jaundice levels again (they think due to the infection) so is back on photo therapy – this just looks like she is on the sun bed as she lies under a blue light with a little pair of goggles on! They confirmed that the hole in her heart was still there, but it had gotten smaller (it went from being 2.5mm to 1.4mm) so they aren’t resorting to surgery yet but are putting her on another 3 day course of medication to see if it will close fully. Hope fully once the hole in her heart has closed then her oxygen levels will improve greatly, but even with the hole still there she has been improving over the last 2 days. She started off having 60 breaths per minute supported by the ventilator and this has been reduced since last night to only having 30 supported (I think Holly takes around 80 breaths per minute), so this means she is one step closer to having the ventilator tube taken out put onto CPAP (the little oxygen mask over her nose). The longer she is on the ventilator the more damage will be done to her lungs, she is at risk of developing chronic lung disease by being on the ventilator but they don’t see this as too much of a concern as her oxygen support is relatively low, so there for not doing too much damage.

Yesterday was the first day that holly got to wear clothes! We were told on monday that if we wanted we could get her some clothes so she didnt have to lay there in just her nappy, so we went straight out to get some. Finding clothes to fit Holly wasn't exactly easy, no where has clothes for babies weighing only 1lb 5oz, but Mother Care has the closest fit doing clothing for babies up to 3lb. We bought her dresses and baby grows and sleep suits and wrap arounds and vests.... but even though they were the smallest clothes we could find they were still too big for her tiny body! so she is wearing a vest as a dress and it goes all the way down to her feet!

Another massive change was that her unbilical cord finally fell off so she now has a teeny tiny belly button! We couldn't get a picture because the lights to get rid of the jaundice make Hollys little world completely blue, but we will get a pic as soon as we can.

Once you have read Holly’s Diary please click on one of the adverts on this page as this is what generates the payments to raise money for Newborns in Need, we are raising on average £2.50 per day at the moment, which is brilliant! How ever, I found out yesterday that it costs £1000 - £3000 PER DAY to look after Holly ( and all babies born extremely premature) so the more money we can raise to help look after other babies like Holly the better.

Thank you for reading about Holly’s progress and thank you all for your support.
x



Holly's first dress (vest!).





Holly catching some rays. 



Mummy, Daddy and Holly having a cuddle.




Mummy and Holly having a cuddle.



Holly's little world, where mum, dad and Holly spend their days.



Holly's home... for now.



Holly.



Holly, Mummy and Gran.



Holly's first time on her tummy.



Cuddles

Today was an amazing day for Matt and I. We got to have Holly out of the incubator and hold her properly for the first time. 10 whole days since she was born and I finally got to give my daughter a cuddle. “Amazing” doesn’t even come close to describing how it feels to hold her close to me and feel her little feet on my tummy and her tiny hands on my chest. I could feel every breath she took and every hiccup (yep, she got the hiccups just as she was put on my tummy – she always had these inside me too!) As well as being amazing it was also a very scary moment when the nurse (Karen) took the ventilation off her, even if it was only for a matter of seconds, and lifted her out the incubator for the first time since she was born, and placed her tiny body onto mine to have “kangaroo care”. Its called kangaroo care because it mimics what a mummy kangaroo would do with her baby in her pouch, its also sometimes called skin-to-skin contact and its beneficial for babies as well as being nice. It helps to regulate their heart rate and their breathing. Karen quickly tucked her up under my vest and let her snuggle into my body to keep warm. Apparently a mums body will automatically adjust its temperature to keep her baby warm, and true enough, as soon as Holly was cuddled onto my chest her temperature went to a perfect 37 degrees for the first time all day! Karen re-attached Holly’s ventilation tube and sorted her other tubes out and then pulled the curtain around Matt, Holly and me and left us to be alone together and enjoy this first moment of many, many more to come.

As soon as Holly was placed onto my chest her little hands started trying to grab hold of my skin and her little feet and legs moved into her favourite frog-like position, I could feel her toes feeling my tummy and when I leaned forward to give her little head a kiss she reached up and happened to touched my lip. She was then fascinated by what she had felt and kept out stretching her little fingers and feeling my mouth. It was something so simple but so lovely, and meant the world to me that some where in that amazing brain of hers she was curious as to what my lips were. Matt and I then heard her making a funny noise, so we asked the doctor to come and check she was ok, and she was sucking on her breathing tube…. so, so adorable! She was making a little sucking noise and moving her little chin up and down, we took a video of her doing this and you can play it at the bottom of the page (you will have to either turn your head or computer side ways as Matt isn’t quite as handy with a video camera as he is with computers!). Then, as her head lay against my chest, she fell asleep for the next 2 and half hours. It felt like heaven being able to have my baby girl fall asleep on me, it’s a moment I will never, ever forget.

I wouldn’t have put her back in the incubator for the whole night if it wasn’t for the fact that I’d left it as long as humanly possible before I had to express milk again (every 2-3 hours is a strict schedule! – and other mums will know how uncomfortable it gets if you leave it too long!!). How ever, it was time to take her back to her little make-shift womb, so Matt and I gave her as many kisses as we could fit in until Karen came and took her off the ventilator again and wriggled her out from underneath my vest and lay her back in her incubator, all tucked up and ready for some more sleep to help her grow big and strong.

Medically,  she is much the same as she has been, she is going back up on her milk tonight so we hope that will turn out better than before (last time she was sick once in the  night from having too much milk). She is sill on a tiny bit of insulin to help level her blood sugars and she is still on a ventilator to help her breathe. As we were leaving tonight though she was coming down on the amount of oxygen they were giving her, so hopefully by morning she will be improving with that. The doctor who did the rounds this morning said she could hear a murmur on her heart, which was upsetting as we thought that had gone as the previous 2 mornings they couldn’t hear it, but we’ll just have to wait and see what happens tomorrow. Also, they thought one of her lungs might be collapsing too much when she breathes, and this can affect how much co2 Holly is expelling, so they did an x-ray and decided that they need to re position her breathing tube that is in her lungs and that this should help with her oxygen and co2 levels. She is still stable and they are pleased with how she is progressing.

Thank you again for reading the story of our amazing daughter, please forward this on to any one you want to, the more people reading about our gorgeous Holly, the more wishes and payers there will be out there for her. We also have adverts on the blog, which have earned £2.19 in the few days the blog has been up, we will be donating all money raised by these adverts to the Newborns In Need charity, which funds the Neonatal until at Heartlands Hospital. With out them Holly would not be here today.

x

Matt, Holly and me all having a cuddle.

Matt, Holly and me all having a cudlle.

Matt, Holly and me all having a cuddle.

Holly and me having a cuddle.

Matt, Holly and me all having a cuddle.

Holly and me having a cuddle.

Little Holly snuggled down my top keeping warm.

you can just see her little head of dark hair peeking through her hat.

1 week & 1 day old

Today was a struggle.

We arrived as usual to see Holly today, around 9.30am, and went in to her room. There are a few other babies in the same room as Holly, all in incubators and needing special care, some nearly as tiny as Holly and some full term but unwell babies. Every morning the doctors do the "ward rounds" which is where they see every baby and listen to their heart and lungs and generally see how well they're doing and give their orders as to what to change that day or whether to keep things the same for another long day. We had been told this always happens between 10am and 1pm but by the time we arrived they had already done Holly and were checking the other babies, and you can't be in the room when they're discussing other babies for confidentiality reasons, so we had only just got there and were being asked to leave with out even saying good morning to Holly bear (my nickname for her!) we sat in the waiting room as we were told and they said that they would come and let us know when they were done, but as you can imagine they are very busy as all the nurses have more than one baby to look after, so no one came to tell us that we could go back and see our baby girl until we got agitated and went to check for our selves.

When Holly's nurse arrived (Rachel) we asked how Holly had been over night (we had rang first thing in the morning and been given a brief summary of her night) and she told us that her gases, which are things like her oxygen level and c02 out put, weren't as good as they would like so she has had to have her oxygen support levels increased. This was so difficult as it was the first time she has taken a step backwards, they kept telling us that she will take 3 steps forward and 2 steps backwards, and her oxygen will go up and down and her ventilator will come on and off during her battle to be healthy, but she had been doing so consistantly well that I had decided in my silly mind (as appose to my sane and rational one) that she would be the first preterm baby in medical history to be able to come home at 24 weeks..... this is obviously never going to happen and I knew that really, but I had been dreaming that a miracle would happen so the news of a step backward just broke my heart all over again.

We did have some good news this morning as well, they couldn't hear the murmur in her heart, this doesn't  mean that is gone completely but its fantastic news and it maybe that its closing or closed completely, but they have to keep and eye on it for now and will have a more concrete answer in a few days time hope fully. She also came off her insulin this morning as her blood sugar levels had gone back down, which was also brilliant - another step forward! How ever, by the afternoon she had to have a little bit of insulin again as her levels were creeping back up - half a step backwards. Her blood transfusion that they did yesterday went well and she is also off her course of antibiotics now, so this is all good news too. The fact that her oxygen assistance has gone up is something that I am fixated with for some reason, I desperately want her to be able to breathe on her own..... well the next step is for her to come off the ventilator and have a little mask around her mouth which will give her help to stop her lungs deflating completely when she breathes out.....I want to be able to see her beautiful little face with out the tube but more than that, it will be a big sign that she is getting stronger and one step closer to being at home with Matt and I.

She is also having a tiny amount off my breast milk, 1.5ml every hour (she started off on 0.5ml every 2 hours) and this will keep increasing until she is able to "tolerate" enough milk to give her the nutrition she needs to grow big and strong and will be able to have one more tube out of her, which will be amazing because every tube inside her increases the likelihood that she will get an infection, so we want as many tubes to come out as quickly as possible as every time she gets an infection means she takes a step back wards and makes her life just that little bit more of a struggle for her.

We got to change her nappy again today, and whilst we were doing that the nurse changed her sheet which meant that Matt got to pick her up and have her tiny body in his hands.... she could fit quite easily into the palm of one of his hands but you have to lift her up in a certain way due to the tubes and wires and of course she cant come out of the incubator but he still got to have her laying in his hands, her little bum in one hand and her tiny head in the other. It was lovely to see Matt holding her and he was so happy to be able to feel her skin against his, but it only lasts a few seconds as she has to have her breathing tube disconnected so it has to be as quick as possible. I will try and take a photo next time this happens as I want to have memories to show little Holly of the first times we held her, and changed her, and hopefully soon, cuddle and kiss her.

Thank you to every one who is thinking of Holly, it means a lot to Matt and I that you are all thinking of us and wishing Holly a long, healthy and happy life. and thank you so much for all the cards we have been sent to celebrate our little girl coming into the world, even if wasn't they way it was originally planned, it is still an amazing thing and definitely something worth celebrating! I feel as though every day is her birthday and deserves a celebration, every minute we get to spend with her is a blessing and something that will never be taken for granted. It is so difficult to leave her side at night, and if it wasn't for the fact that I'm scared that if I don't get any sleep I will catch a cold and not be able to visit then I would sit by her little incubator, holding her tiny hand 24hrs a day.

x

1 week old

Today Holly is one week old.

I cant believe it was 7 days ago that she was born, it feels like a life time ago yet it seems like I have only had 2 seconds of seeing her beautiful face. Its as if life never really existed until she was born, we were just floating along waiting for that day to come and we never even knew it....only other mums (and dads!) will understand what I mean, its like all this time you have spent on this earth up until the second she was born was just time spent getting ready for her arrival, you never really know what it is to truly need some one in your life until you see her face and realise that nothing will ever be the same again. This tiny person is depending on me and yet all I can think is that I depend on her, I need her, I simply cannot live with out her.

I had been told that when Holly was born there would be 50% chance that she would survive the delivery so myself and Matt were petrified from the moment she came out. She was rushed away from us where we couldn't see - we just had to wait. She was moved onto a little bed in the corner of the room where 2 nurses, a consultant pediatrician, a registrar and 2 midwifes all worked on her. They worked very hard for about 15 minutes to get her ventilation tube in her to make sure she could breathe and to get her stable. Matt and I heard what we can only describe as a little squeak from where she was being worked on, which we later found out was her trying to cry! Lauren (the registrar) did an amazing job and saved our little girl, with out her Holly would not have been able to breathe for very long as she was too small and would have gotten too tired, so we are eternally grateful to Lauren and Richard (the consultant pediatrician) for saving Holly's life that day. There are no words to describe how grateful I am to all the people who helped Holly survive the delivery, they will be forever in our hearts and we will never forget how lucky we are that there are people in the world who can do what they do.

Once Holly was stable, she was brought over to us on her special little bed so we could see how beautiful she was - our little girl who we had been told the day before was a little boy! - and Richard asked if I wanted to touch her...... my heart nearly leapt out of my chest, of course I wanted to touch her, I wanted to hold her and cuddle her and kiss her...... I reached over to her tiny little hand a touched her so gently and she clasped her tiny fingers around the tip of one of mine and squeezed it so tight..... I can't describe how it felt to feel her hold onto me, it is immeasurable.

There was a long 7 hours before we  were able to see our little girl again.... we had asked a few times how she was but no one would tell us anything and we were just left waiting. Finally at about 1.30am the midwife came in and told us we could go and see  her. So Matt wheeled me round to the Neo Natal ward where she will be spending the next 4-5 months getting well enough to come home. When we went into the room and saw her tiny body inside the incubator with tubes in her mouth, tummy, legs and arms, and wires attached to her feet, hands and arms - it was all too much.She was so small and needed all this support just to keep her alive..... we stayed with her for a while before we were taken back to our room on the labour ward where we sat for the rest of the night thinking and talking about how beautiful she was even though she was covered in all the wires and tubes.

The next morning we went in to see her and the doctors came to talk to us about what was happening. She was stable and had been all night, she was doing alot of the breathing on her own and was only being supported 60 % of the time (some babies as small as Holly need to be supported 100% of the time) and her oxygen levels were set relatively low at about 40%. She had already had a blood transfusion during the night and was on antibiotics to fight the infection she had gotten from being inside me when I had an infection. As well as this she was being tube fed something called TPN to help her nutritionally and help her grow. She was stablising her own heart rate and keeping her  blood pressure down all on her own. She was amazingly strong and was doing so well already, but we were still told to take it one day at a time as anything could happen.

Since then alot has happened....... she had Jaundice and had to have photo therapy (which is not uncommon even in full term babies) she has had 3 scans of her brain to check for hemorrhages and bleeding - all have been clear so far! Her line into her belly that was giving her the nutrition came out so she needed to have a new one put in and after a few attempts they finally managed to get one in her leg, which was a major step forward as she was loosing weight. Yesterday they heard a murmur on her heart so they did an echo to see what was going on and found out she has a hole in her heart where a duct didn't close at birth that should of done, so she is now on medication to try and close that with out surgery. She also had another blood transfusion today as her red blood cells were dropping low and as she is currently anemic they didn't want it to drop any further.

She spends her days laying in her incubator under her little bubble wrap blanket which helps keep her warm, all the nurses call her a little wriggler as she doesn't like to lay still for too long and is always kicking her legs up and down trying to feel whats in the world around her! Matt and I have started doing her cares, this means we get to clean her face and mouth (she likes to suck on the end of the wet cotton bud we use to clean her mouth - she looks so cute with her little chin going up and down whilst shes chomping away!) we also get to change her nappy, which is fantastic to us as we thought we wouldn't get to do that for a long time, the first time I changed her nappy was the fist time she had done poo - I never thought I'd be excited about seeing or changing a pooey nappy, but I was over the moon!! we also rub her body with a type of moisturiser to stop her skin getting dry and sore, she loves this! She stretches her little arms above her head so you can get into all the nooks and crannies and just lays there letting you rub her tummy with  the moisturiser for as long as you want to.She can't see yet as her eye lids are still fused together but she likes to listen to mine and Matts voices and will calm down if shes being a fidget bum if we talk to her or sing to her. She is also quite partial to a foot rub (like her mummy!) and she likes to touch things with her feet and curl her little toes around your finger tip if you tickle them.... simply put, she is the most adorable creature I have ever had the privalage to meet, she blows me away every second I spend with her, and I fall more and more in love with her every minute of every day.

I have tried to catch you up to speed as best I can and will up date you regularly with how well she is doing.

Please keep wishing and praying for her to get better and to gain weight and become strong enough to come home with Matt and I so we can start our new family life together, the 3 of us - happy, healthy and together forever.
x

Holly touching her nose and ear.

Holly using Matts finger as a teddy bear.

5 days old

Hello

My name's Jenni Maltby and I am telling you the story of the bravest, strongest and most beautiful baby girl you will ever meet,  Her name is Holly Grace Maltby. My Daughter.

I am writing this Blog to keep family and friends updated on the progress of our beautiful baby girl.

I am also writing this to help keep my mind busy in an attempt to stay sane and in case some one else in the same situation needs to know that there are others out there going through the same heart ache and need to know that they are not alone......

10 days ago, on Tuesday 15th November 2011, at 24 weeks pregnant I went into premature labour. We realised there was something wrong when I felt a pressure "down there", so my husband, Matt, and I looked and sure enough there was something coming out of me right there on the bedroom floor. Matt rushed me to the hospital (which luckily is only a mile away) and once we had got there what ever we had seen coming out had gone back in. The doctor came to examine me and told me I was 9cm dilated and that my baby would arrive pretty immanently.
The doctors decision was to keep Holly inside me for as long as humanly possible, to ignore the contractions I was having (which were in my back - I thought I had just got a bad back all day!) and hold onto her. Holly was only 24 weeks and not due to be born for another 16 weeks so her lungs in particular were not equip to deal with life outside of my tummy so the doctors gave me steroid injections to help develop her lungs to give her a better chance of survival when she was born. The problem was that they had to be in my system for 24hrs in order for them to work, so it was matter of counting the hours that went by, every hour was one step closer to her survival.

The hours went by and soon it was the next morning, after a night of contractions and no sleep I was exhausted, as was Matt who hadn't left my side for a second. The doctors came to examine me again and told me I had gone down to 3cm dilated, which was fantastic news, it meant we could buy some more time to let the steroids work and give Holly an even better chance of survival. The major problem now was that the hospital we were in were not equip to deal with babies as premature as Holly, they only look after babies born after 32 weeks gestation, a long 8 weeks away from where we were! so they were trying to find not just Holly, but me AND Holly a bed at another hospital. They wanted Holly to be inside me when they transported her as it was less risky for her that way, but that meant who ever took us in had to have room for me too. There were talks of going all the way to Liverpool, but God only knew if Holly would hang on that long and Heartlands Hospital in Birmingham were our next option, they had a bed for Holly and it was just a matter of waiting until they had a bed free for me and hoping that Holly would hold on. Mum and dad have a friend at Heartlands, a consultant obstetrician, so they phoned her to see if there was anything she could do and with in what seemed liked minutes we had a call back saying she had got us both a bed. It felt like a miracle that some where could take Holly and me and that we could get her safely there inside my tummy.... except by now I was 4 cm dilated and Holly was trying to come down and be born. The ambulance arrived to take me to Heartlands and that was the longest 40 minutes of my life. I was sure that iIwas going to give birth in the ambulance and that no one would be there to save Holly. but thank God she hold on inside my tummy.

We arrived somewhere between 1pm and 3pm on Wednesday afternoon, I'm not sure exactly of the time, it was all a blur, and we were taken straight into the labour unit where I was then told I had an infection and needed to have antibiotics by drip to bring my temperature down and get rid of the infection so that it didn't affect Holly inside me. Again began the waiting game. Keep her inside as long as you can. I had had no pain relief as it might have made Holly drowsy when she came out, and was still getting contractions, sometimes every 2 minutes, sometimes every 6 minutes, sometimes not for 15 minutes, but Holly was really trying to come out and see the world. this went on until Friday afternoon (3 whole days after we had originally gone into hospital - every day that passed meant that there was 2% more chance that Holly would survive) and the doctors finally decided it was too risky to keep her in due to my infection and put me on another drip to increase my contractions and get her out.

At 6:41pm on Friday 18th November, Holly Grace Maltby was born. 15 weeks and 4 days early. weighing a tiny 1 lb 10 oz.

Holly holding my finger whilst she sleeps.