Sunday, 30 May 2010

11 weeks near, yet so far!

Sophie has been on the move again and is now in special care, as of Saturday night! She looks really cute in her new cot and is now wearing wee cardigans to keep her warm, now that she's not in her heated cot any more. She's starting to look and act just like a newborn. She is now ...fullterm :-) She had her very first proper feed on Saturday, without getting a top-up through her tube, and she went to sleep after it until she woke up right on cue for her next feed!

Sophie in her new home! Finally a proper cot
with hardly any tubes...looking like a newborn

We were told on Sunday that she would be getting her sleep study on Wednesday, and Alan and I were booked into the room for Tuesday night and Wednesday night so that I could start doing every feed, through the night as well as through the day. When she has passed a sleep study and can manage all her feeds and still put on weight then she is allowed to come home!

Special care is very very different from ICU and HDU! It's really just been a case of sitting watching Sophie waiting for her to wake up for her feed! She started doing demand feeding on Tuesday but we're not to let her go longer than 4 hours. She had two successful feeds on Tuesday afternoon and she had to be woken up for both of them! Let's hope she is a good sleeper when we get her home!

It is so lovely being able to pick Sophie up whenever we want, and do absolutely everything for her. She still had her feeding tube at the beginning of the week, but it was getting in the way when she was feeding, and they decided she didn't really need it any more so it was taken out.

Her sleep study started out well on Wednesday morning with her numbers up above 94, but during her late morning feed she gave me a scare when she had a huge dip mid-feed and went grey and floppy and started to go blue round the mouth and eyes. I have never been so terrified in my whole life. The nurse rushed in and grabbed her from me, and started blowing on her and patting her on the back. I felt so helpless and was so wishing Alan was there but he was at work. The nurses said it was just because there is so much to think about when she is learning to feed and she just forgot to breathe. I knew this would mean she'd failed her sleep study but we did think all along that it was very soon to be doing the sleep study when she'd only come off CPAP last week and started demand feeding the day before after being tube fed for every feed up till then.

The feed after that was perfect and there were no dips at all but her heartrate continued to go up and down for the rest of the day. I was still really scared during the next few feeds, and Alan got up with me in the night to go along to do the feeds. The nurse looking after her overnight was lovely, and really got me sorted out with the feeding and helped me to relax with it. Sophie was up once during the night and once around 6.

Cuddles with tubes!

The sleep study was arranged to be repeated on Friday night, and the nurses booked us into the room for another few nights so I could continue to do all the feeds. Alan had to come back home to collect some more clothes etc for us, as we'd only gone with enough for two nights!

Friday came and Sophie's sleep study was repeated. It had to be re-started at midnight because one of the night staff didn't realise the computer was being used for that, and she used it for something else. It was so frustrating! We were told on Saturday morning that Sophie was not yet ready to be going home and that she might have to go home on oxygen. It was one of the community nurses who had read the results of the sleep study and she seemed convinced that Sophie would be going home on oxygen. She was even going to order the cannister so that it didn't delay things as it would take a few days to arrive. She also wanted to arrange for me to go to visit another mum and baby who had just gone home on oxygen so I could see what the set-up was like at home, and she told us that Sophie would be at high risk of cot death. As soon as she said that it all just got too much for me and I rushed out in tears.

I phoned Dona, who had little Archie at 27 weeks last year, and she told me not to rush into anything. She said to give Sophie another week in hospital and see what happened, and that often something just suddenly clicks and oxygen may not be needed. Sophie had needed a feed while all this was going on, and Alan had to give her some expressed milk by bottle - her first ever bottle feed.

I eventually went back along to Special Care and had a cuddle with Sophie then Alan and I went for a cup of tea and talked about our options. We decided we'd rather even have her in hospital another two weeks than bring her home on oxygen for what could end up being a few months. Her saturation levels could improve a lot in a week, and the nurse did said she'd even seen a difference in Sophie that day. I even heard Sophie do her first proper loud cry that afternoon!

I managed to find the mouse outfit again that she'd been wearining in HDU (my very favourite outfit!) and I dressed her in that so that cheered me up a little bit! I was surprised at how much better it fitted her than the last time she had worn it! She was a bit cold so we put a wee pink hat on her too and she looked so cute!

It's been a stressful week - the most stressful since she was born - but maybe next week there will be good news about her coming home! We are really starting to feel the strain now. When she was first born, we knew there would be weeks and weeks stretching ahead - probably at least 13 if we were looking at getting her home around her due date - but now she is a couple of weeks from her due date and it's so hard knowing we are so close to getting her home but still so far.

Here are a few more pictures of Sophie's first week in Special Care.

Sunday, 23 May 2010

10 weeks old and first attempts at feeding!

We spent a few hours with Sophie on Sunday and she was wide awake and so alert! She looked very worried most of the time - she always has such a worried look when she opens her eyes, as if she is very suspicious about what she might find when she opens them! We both got cuddles, and Sophie was off her CPAP for 7 hours! Her daddy had to overcome his cotton wool phobia when Sophie was a bit sick and he had to wipe it up...I never ever thought I would see him pick up a piece of cotton wool! I started to wash Sophie's many clothes at the weekend, ready to go into her wardrobe when it arrives next week.

I visited another little baby on the unit, Anna, who is about a month younger than Sophie, then Anna's mummy came to see Sophie before we went for a cup of tea and a catch up. It's so hard to believe that Sophie was that size not so long ago.

It was my birthday on Monday and I can honestly say it's the best birthday I've ever had. I spent the whole day with my little princess, and when I went in, there was a card in her cot and a present hanging on the end! She had given me a beautiful silver heart-shaped locket with "Mum" on it and the card was gorgeous too. What a clever girl getting out to the shops!

My special girl with my special card

Sophie and I had a brilliant day together. She had just come off her CPAP when I arrived at 9am, and had pulled her nose prongs out and was wearing them round her neck like a stethoscope! She had also pulled her feeding tube out! This meant that finally I could see her beautiful little face without any of the tubes that we have been so used to seeing. It's been a long, long wait but definitely worth it. You never expect to have to wait till your baby is 10 weeks old before seeing what they really look like.

First photo of our beautiful girl with no tubes!

The nurse, Anne, said that Sophie didn't need the nose prongs any more so she took them away altogether and Sophie had no tubes at all!! Anne had dressed her in her own tiny pink velvet trousers with feet, which we have been waiting for her to grow into since the week she was born. We thought we'd never see the day that she was big enough for those - even though they are very very tiny (up to 5lb). She looked soooo cute!

Birthday cuddles for mummy :)

Anne asked me if I was planning to breastfeed, and when I said I was, she said Sophie was ready to try! I got all set up with screens round the cot, and Anne said she would just leave us to it, just put Sophie inside my top, have cuddles and see if she did anything, and I was just to shout if I needed any help. Sophie latched on pretty much straight away and Anne was really surprised that she took to it so well immediately :)

Sophie was allowed out for extra cuddles in the afternoon because of it being my birthday, then Anne and I got her all nicely dressed up and took some photos for Babylink. Aunty Caroline visited, and Daddy came in at lunchtime and after work, when he had Sophie cuddles too. Definitely a great birthday!

On Wednesday, Sophie came of CPAP at 4am and was off ALL day until 5pm, then was only back on for 3 hours before getting grumpy with it and trying to pull it off herself! The nurse took it back off again - that's the best she has done yet! She had another successful feed in the afternoon - we weren't sure how much she had actually taken, so the nurse reduced her tube feed by 15ml and she seemed fine. She is still off oxygen altogether! She was wearing her own snuggly white suit that we'd bought her at the weekend, and Grandpa got his very first cuddles in the afternoon. He'd been longing to get cuddles too so was really happy!

When Sophie was weighed on Wednesday night, she was 5lb 2!! When we left the hospital on Thursday evening, she had been off CPAP for 24 hours....but the nurses were not telling Sophie in case she started acting up! They kept whispering to us about it! Sophie had another good feed and we were told if she stayed off CPAP for 72 hours it would be taken away altogether....! We were also told that it would be a miracle if she managed 72 hours off it. She was wearing her own wee babygrow again - newborn size - and it was actually fitting her quite well! The nurse looking after her told us that Sophie was really good natured compared to a lot of the other babies, who could apparently be quite crabby at times!

In her own outfit, and trying to be on the move!

When we phoned at bedtime to see how Sophie was, we were told that the CPAP had been taken away altogether!!! That child never ceases to amaze us.

On Saturday, one of the community nurses came to chat to me about Sophie's progress, and she actually mentioned the H word...we'd got so caught up in visiting every day and watching her progress we'd somehow not realised that she is actually getting pretty close to being ready to come home! I was told that depending on how she was getting on over the weekend, they might put her into a normal cot at the beginning of next week - then they would be looking at her getting transferred to Special Care - the last nursery before home!

The nurse explained that Sophie would have to pass a sleep study before she would be allowed home. This involves her being hooked up to a machine so that they could monitor her oxygen levels and heartrate through various normal activities such as a deep sleep, cuddles, feeds, nappy changes etc etc. Her oxygen level has to be an average of 94 for her to pass. The nurse booked her in for a sleep study next week! It feels very sudden and soon for her to be getting it as she has only just come off CPAP and started breastfeeding but even talking about doing the sleep study is a big step closer to getting her home.

Our gorgeous girl, looking more like a newborn every day

We are feeling pretty overwhelmed at the moment - yesterday was just a normal day and suddenly today they are talking about a normal cot, special care and home very soon! It's so typical, Alan had gone to sit in the canteen for a while (it gets very hot and intense in the room!) and he missed the whole chat so I was trying to take it all in myself! They booked us into the double room on the unit for a couple of nights next week so I can try to get the breastfeeding established and do all the feeds, rather than Sophie having to be tube fed when I'm not there.

Again when we phoned on Saturday night there was a surprise for us - after being told if she was ok all weekend she would be going into a normal cot at the beginning of the week, she was already in a normal cot on Saturday night!! Special care, here we this space!

Sunday, 16 May 2010

9 weeks old and lots of cuddles

This has been quite a week! Sophie was in her own clothes for the first time, and her Granny (Sinclair) and Grandad (Baxter) got cuddles for the very first time - a moment they've been longing for.

Alan and I didn't go up on Sunday to see Sophie as we are trying to have one day each weekend at home to try to catch up with things - hard though it is being away from Sophie, we really need a day at home once a week. Steph and Brian went to see Sophie on Sunday and she was in one of her own outfits for the very very first time! I can't believe I missed that, but Steph kindly took a photo for us :)

Sophie in her first ever "own outfit" - size of outfit: 3lb!

I spent all day on Monday in the neonatal unit with Sophie and she was doing really well. She managed 9 hours off CPAP and when the nurse put it back onto her, she was fighting with it so much it was taken off again! I was allowed to lift Sophie out of her cot myself for the first time which was a bit scary with all the wires and monitor leads, but I managed and had a lovely long cuddle with her. I also changed her babygro for the first time ever!

Sophie had her immunisations that night and we were warned she might be a little bit off colour the next day. She wasn't too affected by them, but she did have to spend the day back on CPAP.
The day after that, she was back to spending 9 hours off.

Granny had her first cuddles this week, and Sophie was in the cutest outfit I have ever seen in my life - a wee pink velvety babygro with mouse feet complete with ears! Grandad (Alan's dad) also got his first cuddles the next day. Grandpa's turn next week...

Granny's first cuddle

Grandad's first cuddle

Sophie's latest weight update is 4lb 10 and she is getting really good at sooking on her dummy while she is getting her tube feed! She wore another of her own outfits for the first time this week (thank you Nic and Rick!) and looked soooo cute in it! It's a "tiny baby" outfit but still pretty big on her! She's been a wee toerag pulling her feeding tube out all the time - even during a feed.

Uncle Greig and Aunty Claire visited this week and saw a big difference in Sophie as they hadn't seen her since she was still in her incubator in intensive care. They were able to touch her for the first time.

Besotted aunty and uncle!

Sophie's daddy and I are allowed a lot more cuddles now which is amazing...she is really starting to feel more like "our baby"....

Sunday, 9 May 2010

8 weeks old - clothes and a heated cot!

Still 5 weeks to go till Sophie's due date and our little princess is doing sooo well :)

I went up with Alan when he went to work on Monday and spent the whole day with Sophie for the first time. She had a lovely nurse called Roz looking after her, and Sophie was in a mischievous mood! By lunchtime, she had pulled two feeding tubes out, and the second time it took both Roz and me to get the new tube in because Sophie was wriggling so much! We ended up putting a mitten on her to stop her from being able to pull anything....or that was the idea, anyway!

This was how I left Sophie when I met Alan for lunch...

I met Alan for lunch, and left Sophie looking innocent, wearing her mitten. When we came back, she was still looking innocent, but the mitten was off, and the feeding tube was out once again! Roz said Sophie was getting an ASBO!

Left alone for half an hour...mitten off, feeding tube out!

We had been noticing over the previous few days that Sophie had been sucking on her feeding tube, so Roz decided to try her on a dummy to see if she could learn to suck while her milk was going through the tube. She instantly knew what to do as soon as she was given the dummy - and even when it fell out of her mouth, she pushed it back in herself!

After I'd done Sophie's feed and nappy change after lunch, I was allowed her out for cuddles, and she was out all afternoon!! She was still out when Alan came in after work :) We had such a lovely afternoon together and I told her all about our plans for her nursery!

Lovely cuddles with mummy

On Tuesday, I went up with Sophie's granny and grandpa, and when we were still washing our hands, my mum noticed that Sophie was in a heated cot!!! Woohoo! I'd gone in half expecting to see her in the middle of a blood transfusion, because she was slightly anaemic again on Monday and there was talk of her getting another transfusion, so it was a brilliant surprise to find her in a heated cot. The next piece of excitement was that I noticed she was in a wee outfit - a little pink body suit - and then Roz told us that she had reached 4lb! It was so lovely to see Sophie in an open cot rather than the incubator, and wearing clothes. I didn't tell Alan before he came in, as I wanted to see his reaction - and it was well worth waiting for. My mum and dad were able to touch Sophie for the first time. She was making her grandpa laugh by opening her eye with a very worried look on her wee face - she always looks so worried when she opens her eyes!

When Alan came in, Roz showed us how to change the monitor lead on Sophie's foot to the other foot - this has to be done each time she gets a nappy change, and we have to give her foot a wee massage! When Roz showed us how to massage her foot, it must have been tickly, as the foot was drawn swiftly in!

Very proud grandparents

Clearly a bit worried about what she will see when that eye opens!

I went to see Sophie again on Thursday with her other grandad, and he finally got to hold her little hand which he has been longing to do for ages! Aunty Gail also visited, and Alan was allowed Sophie out for cuddles. It was so sweet, every time he spoke, Sophie was looking up at him. I did my first nappy change with Sophie in a babygro, which was so different from changing her nappy inside the incubator! It was a bit of a joint effort with Aunty Gail's help. It's nice not having to do the nappy changes through the two holes in the side of the incubator although we had got quite used to that!

I had washed a few of Sophie's tiniest clothes to take up to the hospital, as she is allowed to wear her own clothes - so I took those up on Thursday. I hope none of them go missing! They looked soooo cute drying on the radiator!

Grandad's not smitten at all......!!!!

...and neither is Daddy!

On Friday, we didn't go to see Sophie, as Alan took a day's flexi and he and his dad worked in the garden all day, making it Sophie-friendly. It used to just be all minging gravel and was sooo boring but we now have grass, nice fences, plants, flowers, and a nice little sitting area with a table and chairs. Sophie will now have a lovely place to play when she gets bigger - it's only taken us three years, and Alan's dad says it's taken us having a baby to make us get the garden organised! It's looking great though, and such a difference from how it looked on Friday morning before they started.

So we are finally getting organised for little Sophie coming home...her grandad painted the nursery earlier in the week and it's looking great, the curtain material has arrived, the border has been ordered and her other grandpa is going to do some Beatrix Potter pictures for the walls as he is brilliant at drawing and painting.

Yesterday Sophie was started on the proper cycle of coming off CPAP. She was taken off it at 1pm when I first went in, and then she came out for cuddles. It was so lovely cuddling her without her hat and mask, and wearing a little babygro! She has found her voice in the past week and was doing all sorts of cute little baby squeaks all afternoon. Alan also got cuddles because Dona, who I met through a pregnancy/baby forum and who had her little baby Archie in the neonatal unit in ERI last year came in to say hi, and she introduced me to Archie so while I was away meeting him, I handed Sophie over to Daddy :) Archie is absolutely gorgeous, and such an inspiration - he was born at exactly the same gestation as Sophie and is now fifteen months old.

Sophie also met Aunty Stella and Uncle David for the first time yesterday.

Sophie has the hairstyle of an old man at the moment, as the CPAP as worn away all the hair at the front, so she just has hair round the sides and the back, poor wee soul! She still looks very very cute though! The hair at the back is all fluffy and sticking out and looks so sweet.

She has been doing really well off the CPAP since they started the cycle - she had seven hours off yesterday afternoon, six hours off overnight and another seven hours off this afternoon. She is on very little oxygen, and at some points has been on no oxygen at all, so she is doing very very well. We can't believe how much progress we have seen this week, considering she started the week in an incubator on the verge of having another blood transfusion and has ended the week in a heated cot, clothes and coming off CPAP - and has reached a whopping 4lb 7.5oz!

Next week: Sophie in her very own clothes for the first time....

Sunday, 2 May 2010

7 weeks old and Sophie has moved house - twice!

Young Sophie is now 7 weeks old (or 34 weeks). When Alan took her milk in to her usual room on Monday morning, he was told she had moved into a new little nursery with just two cots! The nurse told him that Salisbury, the intensive care nursery where she was from when she was born, is just for very young and/or very sick babies, and that Sophie is neither of those :) She had also been weighed and was 3lb 10.

Sophie's grandad and I visited her in the afternoon and the nurse asked if I would like her out for cuddles - I wasn't expecting more cuddles, as she had just been out on Saturday!

Sophie is good at the worried look!

After grandad had left, I was told it was time for a nappy change. I had just filled the bowl with water, when the nurse came back in saying the nappy change would have to wait, as Sophie was being moved through to the high dependency nursery, Braids! She did make me promise that the nappy change would be the very first thing I did when we got through there, as little Miss Baxter was a little bit whiffy!

They unplugged all her tubes when they were happy that she was stable enough, gave her a little whiff of oxygen, and said they would "wheech her through so fast she wouldn't even notice!" The nurses loaded me up like a packhorse with Sophie's belongings - her nappy bowl, cotton wool, several bottles of milk, her file with her notes in it etc and off we went, with me trotting dutifully behind the incubator and all the intensive care nurses laughing at us!

Tired out after all that moving!

As soon as Sophie was settled, I did the dreaded nappy change and gave her a feed and then the poor lamb was tired so she went off to sleep. I texted Alan to tell him we were off to Braids, and got a "What, NOW?!" text back! We knew she would probably be going there within the next few days but hadn't expected it to be the same day that she was moved to the small nursery!

On Tuesday I went up to see Sophie with her Granny and Grandpa, and they saw her off the CPAP for the first time. That was the first time they had ever seen her without her hat and mask, and they finally got to see her beautiful little face :) They hadn't seen her for just over a week and couldn't believe the difference in her size.

She has not been coming off the CPAP so much this week even though they had started to cycle her off it in intensive care the previous week. I had started thinking she was taking a step back, but later found out that they just like to see for themselves what she can do when she moved to HDU, as they hadn't worked with her before. The nurse who was looking after her on Tuesday started teaching me everything from scratch, eg nappy changes which I have been doing for weeks! However on Thursday she completely left me to do everything unsupervised - including turning Sophie over, which she had only shown me for the first time on Tuesday. It was a little bit scary turning her over without any help and without anyone even watching - I was scared in case I hurt her - but I managed ok.

Aunty Gail visited on Thursday and brought her two gorgeous little pink outfits. Last week she brought her a lovely Jemima Puddleduck which will be perfect in the nursery, which we have decided to decorate with a Beatrix Potter theme - that means that last week's picture of the border we were planning to get is now out of date!

Jemima Puddleduck

We have finally picked a colour for the nursery walls - a very pale pink (called Nursery, funnily enough!), and chosen our curtain material - pink background with Benjamin Bunny, Tom Kitten and Mrs Tiggywinkle. Stella next door is going to make the curtains for us, and Alan's dad is going to paint the room. Aunty Gail is on the case trying to find a Beatrix Potter border, as she is the queen of sourcing items on the internet! My dad is brilliant at drawing and painting and is going to do us some pictures of Beatrix Potter characters for the it's hopefully all coming together!

We visited Sophie again on Saturday and asked if we could get her out for cuddles, as all the other babies in the nursery were out! The nurse said she was happy for Sophie to come out for a whole hour, because she is always stable when she is out for cuddles :) She ended up out for over an hour and she had no dips at all when she was out...she just lay cuddled into me and slept!

She seems to be used to all the noise that's constantly going on around her - I've been told that premature babies end up sleeping through anything! It's certainly a very different atmosphere in HDU - alarms going all the time with nobody rushing to switch them off because the babies are expected to sort themselves out eventually, babies crying, and many more babies in the room than there were in ICU. We were even told yesterday that if Sophie's alarm is going and we can see she is ok, then we are allowed to silence it ourselves! We have been used to a nurse rushing in to check if she is ok and switching the alarm off so it's going to take a bit of getting used to. It's definitely good progress though. We will miss our favourite ICU nurses but will hopefully get some new favourites through in HDU!

Tucked back in her nest after cuddles

Sophie was weighed again at the end of last week and is now 3lb 13 - woo hoo! That's a whole two pounds heavier than her birth weight! Four pounds here we come! She is now onto two hourly feeds as of today, and tolerating it well - she is now getting 25ml per feed.

She has also been starting to suck her feeding tube and sucking her fingers and the nurse said that's a really good sign! We also talked to the nurse yesterday about clothes - she said if we have any clothes that we want Sophie to start wearing while she is in there, if we name them we can take them in for her and she might soon get to wear something. She will start with little vests and progress from there. She's not quite there yet but hopefully she will be soon. She has some teeny bodysuits and the tiniest pair of pink trousers we have ever seen, so they will all be going in! I can't wait to see her in the tiny trousers - they are just sooo cute :)

Hopefully by next week's update, Sophie will have reached the 4lb mark and we might have some nursery (work in progress!) pictures to put up!