Wednesday, 29 February 2012

Brothers unite!

The last few days have been so much more positive and I have half a spring in my step again! The boys were weighed on Sunday and Joey Chunka Chops Fox now weighs a hefty 3lbs! 3lbs!!! Little Xander weighs 2lbs 11 so he's not far behind. Joey had another blood transfusion yesterday to boost his Oxygen in his blood as the doctors are keen to get them off Sipap now. It took 4 attempts to get the cannula in and i nearly lost it at the doctors. I think I made one of the doctors a little nervous as after two attempts by the first doctor I asked her to please not do it if she wasnt 100% confident. I think the death stare I gave her following this statement made her decision a little easier  She said she'd leave it for the registrar to do.

Joey has been doing so well since the transfusion and Xander is doing just as well. The doctors are really pushing them to get off Sipap and today we left Xander doing 4 hours off and 2 hours on and Joey was doing 3 hours off, 3 hours on. They cry when they go back on the Sipap machine which is good as it shows they're strong enough to fight it. Come on my tell them you dont need it anymore!

Every day I get to the hospital and see new babies that have arrived. New babies come in to the pink nursery where we are. This is the nursery for the sickest (or youngest ) babies. We've seen babies come and go for weeks. No one stays as long as we have. We see them move to the purple nursery to the right of our nursery which is for babies who are almost ready to go home but just need a bit of extra monitoring. We can see them through the glass windows looking so happy holding their babies. Once they've done well in the purple nursery, they move on to the blue nursery. This is the exciting one - its to the left of ours and through the windows we see mums feeding, holding and playing with their healthy bundles. When you're in this nursery, you know you're going home soon. One day we'll move out of the pink's weeks away but I can almost feel it in my bones!

I'm at the hospital so much and it's been so long now that the canteen workers ask if I'm staff when paying. I'm tempted to say yes..I'm a, doctor, no..surgeon! But I won't, instead I say the same thing every day. "No, I'm just visiting my baby boys". Lucky for me, I quite like hospital food! It's like airplane food but the portions are bigger. You never know what surprises you're going to find in your meals but that's part of the fun... Blurgh!

So, highlight of the week. It's a great one!! It happened today and I'll remember it forever. The boys were coming off their Sipap and nurse Julie was on shift. She'd seen me get quite upset over the cannula incident yesterday and wanted to cheer me up. She took Joey out of his incubator and put him in with Xander! On his way in, she put him on her shoulder and kissed his little head. Like a proper baby! She then gently lifted him on to my shoulder and I held him and covered every part of his head with little kisses. I've never held him like that before and I obviously burst into tears. Happy tears! He was nuzzling into my neck and opened his eyes a little. He was so precious and tiny. I could see my reflection in the window and I looked like a real mum holding her real baby! He was in air with no Sipap and no Oxygen...such an amazing feeling. I held him for about 20 seconds and we then put him in the incubator with Xander where the O2 was pumping so they could breathe properly.

Joey was wide awake from his cuddle with me (and probably from being Oxygen deprived!) and he stared at Xander for such a long time! He looked at his face as if he was studying him and then lay his arm down and gently held his brothers hand. Cue floods of tears from me. The nurses were all coo'ing and calling other nurses over to come and have a look at them together as they were just so sweet. Pauline, the parent relations co ordinator came rushing in with the camera and took photos of them. She gave me a little album with their photos in to keep. So precious. Xander was so sleepy but opened his eyes a little to see Joey. He looked at him and held on to his hand as if to say "Where've you been Bro". They closed their eyes and fell asleep for about half an hour. Complete bliss. They were both being monitored and their stats were exactly the same which was great as it meant that they could stay with each other a little longer. Xander then woke up and sneezed on Joey but he didnt seem to mind! Joey then put his hand on Xanders face and Xander patiently let him leave it there...Half an hour later Xander started stretching and looked a bit like he wanted some space! We moved Joey back to his incubator and they've both been doing so well since. Joey was in 22% O2 in his incubator...21% is air so that's amazing!

I can't wait to see them together again and to see them interacting and staring at each other.

We've not had any visitors now since the beginning of Feb as there's a visitor ban to keep viruses at a minimum. Apart from the fact that I'm going slightly mad from being alone all day looking after my two angels it's also sad that our family and friends cant see them growing and developing. I'm sure they'll make up for it when we leave...everyone is welcome to come over and do the 3am feeds when they're home!


Xander..maybe they are identical afterall!
Boys together!

Hi Bro, I've missed you!

Xander starting to get fidgety

"Get out of my bed!"

Sunday, 26 February 2012

Daddy Day Care!


The last few days have showed continued progress for both of the boys which just changes our lives completely, when we know the boys are ok we can try and enjoy the brief time we spend away from them. In particular for me I found work very hard in the first month (which I guess is to be expected) as I just wanted to be with the boys and Soph and I just spent the whole time wishing for positive updates.

Now they have started to come with increased regularity for the first time and it feels fantastic. They both are still having their little struggles and the steps they are taking forward are small ones but we are still going in the right direction and we are so proud of our little fighters. During the week, Soph is with the boys in the day and I see the boys every night after work and stay with them for anything between 30 minutes or two hours. I recently discovered that Soph's very good at letting the boys rest when they are sleeping as any kind of stimulation is taking their energy away from growing and developing. I'm not so good at this!! When I go and see them in the evenings I can't resist rubbing their tiny backs or holding their hands as they are just so cute and I have this romantic notion that daddies touch is of course soothing and just what they's our Fox boys secret and we won't tell mummy!!

On Friday I had a cuddle with my baby Xander. Although the hospital like to put the babes down our shirts to promote the skin to skin contact I really like craddling them when I hold them as I can look at their faces and cover them with kisses!! Having cuddles with them when they are off Sipap is just magical as they open their eyes, move their mouths and try to wave their hands around, which indicates they are starting to behave like proper babies and we love it. It's strange, because we don't have any other children to compare it to, even though we are in this sometimes horrible intensive care ward, we still get the immense pleasures from our babies when they start doing things for the first time, like sucking their fiingers, wriggling all around their incubators, or turning from side to side.

When we went to visit them yesterday morning (Saturday) we noticed a bit of a pong coming out from both of their incubators!! Although you may think they should have regular baths, they do not like handling too much and the hospital try to leave them in peace as much as possible but unfortunately there was no denying this smell, the bubba's needed a bath! This was great fun as both Soph and I got involved. We had the little bathtub in the incubators and the nurse held them over the bath whilst we washed their hair, faces, arms and arm pits. They didn't seem to mind it too much, only the odd occasional cry. We wrapped them up in towels after and rubbed them dry, it was fantastic and the first time I'd cleaned them. They looked so clean and cute afterwards...if a little shocked as to what occured!

I love every minute I'm spending with my boys and am so happy with their progress, it's just bringing the moment I take my whole family home closer and closer.

Xander holding our hands after his bed bath

 Joey having a cuddle with his teddy

Xander holding his dummy (for about two seconds before he spat it out!)

 Joey having wriggled all the way down his incubator
 Joey star fish

Joey not liking his Sipap

 Xander and his tiny hand

 Joey saying his prayers

Tuesday, 21 February 2012

Nappy pants!

The boys have done so well these last few days. Their O2 requirements have been much lower and they've both been a lot more settled which is lovely to see. Both have needed blood transfusions which I still find difficult but they look so much better and their O2 levels are much better afterwards too. I have to leave the room whilst they put the cannulas in as I dont trust myself not to rugby tackle the doctors to the ground for making my babies cry so much!

I havent held either of them for quite a while now but i'd rather they preserved their energy for growing their lungs. I'm desperate to hold them though, I miss my babies. I hold their hands and place my giant hand on their tiny backs but I want to hold them and look at them like a proper mum. One day.

Both boys have put on weight which is great! Joseph in particular has a little bit of padding on his thighs now - just a tiny bit but I love it. They're now both over 2lbs. Joey is 1140 grams and Xander is 1080 grams.

Thier little personalities are coming out too. Xander sleeps with all curled up with his hands over his face as if he's shy. He's also not so good with handling and does the sweetest sad face! Joey on the other hand likes to sleep spreadeagled (like his dad!) and copes a bit better with handling. He does big projectile poo's and wriggles a lot. He'll kick his blankets off and wriggles right down to the other end of the incubator. People say that twins should share a cot but i'm not sure Xander will get much room if we ever do that!

The boys are now having one hour off sipap and 6 hours on. It's so nice to see their little faces again. They still have O2 when off sipap but it's good progress and I'm so proud of them for doing so well. Keep growing those little lungs my babies, big breaths and one day we'll have you home where you belong.

Xander enjoying cuddles from daddy

 Xanders new nappy pants!

Joey in his nappy pants..he didnt like them as much!
Joey sleeping with one foot in the air before he kicked his covers and nesting off him!

Xander (with cannula) being stroked by daddy

 Joey taking it easy...reminds me so much of Matthew!

Friday, 17 February 2012

Happy days!

What a great day! Both boys did so well and their oxygen levels came right down. Xanders levels were down in the thirties for most of the day and I even got a cuddle! Michelle was looking after him and was brilliant. She's looked after him a lot and knows what helps him to settle and what he likes. She sorted out his incubator bed so he was tucked up in a little ball just how he likes it and just like he was in my tummy. After changing his nappy he normally starts to desaturate (loose oxgen in his blood) and after a big nappy change in the afternoon Michelle was facing his sipap monitor. She asked me to guess what he was on. I guessed "43" . She told me to come and have a was at 27!! Good boy! That only lasted a few minutes but still, the fact that he was down in the 20's in amazing progress!

Joseph also did briliantly and his lowest was around 24 which is such good news. Both boys needed new incubators as they need clean one's every 7 days. They both had nose breaks whilst they were sorting the beds and wires out. Joseph was so sweet rolling around and making the most of his time without the mask on. He looked like he loved it! Xander also had a good wriggle and stretch. It was so lovely to see their faces again.

Matthew was feeling better so said he would pop in in the evening. I hadn't slept much the night before as I was worrying so much and as Matthew was coming in the evening I went home for some rest. Matthew was meant to be there for about 20 minutes but was having such a fun time watching the boys on another nose break that he stayed for another hour and a half! He was so happy when he got home and it was lovely to hear him so excited about their progress. We both keep reminding ourselves about the dreaded rollercoaster and know that everything could change today or tomorrow but to have one good day is bliss.

Keep it going boys!


 Joseph - so independent that he likes to hold his own facial oxygen!

 Cuddle with Xander

Joseph playing with his daddy

Wednesday, 15 February 2012

Rubbish day

We spoke to the doctors yesterday - we were both so nervous. Luckily Matthew did all the talking so I could hide my shakes and swallow any tears. They said that the boys aren't performing as they should be (flash forward to parents evening?!). Everything other than their lungs seems fine for now but their lungs just arent working as they should be for their gestational age. They both seem to be stuck on sipap and we need to get them moving as staying on sipap itself for too long can be harmful. Their plan is to put them on a course of diaretics starting off with a low dose going up to a higher dose if necessary. Then we'll see how they do over the next few weeks and hopefully with this extra time for their lungs to develop and the effect of the diaretics draining fluid from their lungs they should get better and gradually come off sipap. The doctors also told us that the boys wouldnt be going home at their due date of 15th April  - it would most likely be a few weeks after that. If the diaretics dont take effect then we'll have to think about the horrible last resort medicine but there's no point thinking about that now.

We left feeling a mix of emotions - positive that everything else seems to be working ok ie brain, bowels etc (although the doctors are careful to say that this is fine for now and it doesnt mean they wont be different in the future). But really disappointed that the boys werent performing well for their gestational age - I thought all babies their age would be having the same problems but apparently not. The next few weeks will be really important for them and they need to start showing some good signs of improvement.

Today was a tough one. I arrived and Xander was up on a lot of Oxygen. I put my hand on his little back but that seemed to make it worse so left him alone for a bit. The doctors had just done a ward round and the nurse said he's just recovering from being handled so much. They were short on nurses again and the senior nurse had to leave the room for a bit leaving the junior nurse (who looks about 12) in charge. Xanders oxygen requirement was getting higher and higher - more than he's ever been on. Before panicking I changed his nappy incase that was what was bothering him and the child (nurse) changed his mask incase that was upsetting him. Nothing seemed to help and he kept needing more and more. I asked her to please do something as he's never been this bad and she called the doctor in. He changed the pressure on his mask and he came down a little but he was all limp and just not right. I then had a mini break down and couldnt stop the tears. It was quite embarrasing and odd being comforted by the child (nurse) but I couldnt hold it in any longer. The doctors said they would up his dose of diaretics to see if that would help.

Later in the day, I was changing his nappy again when he starting going downhill again - we had to put his oxygen up to 70 and he looked like he was really struggling heaving his shoulders up and down with every breath. My little angel was finding it so hard and I hated every second watching him like that. He opened his eyes for a while and it was like he was looking right at me asking me to help him. I couldnt bear it any more and again, out came the tears. I held his tiny hand and told him how sorry I was that I'd done this to him. Maybe if i'd slowed down when I was pregnant he would still be in my tummy enjoying himself instead of going through this nightmare, I dont think I'll ever get rid of the guilt.

I left the room when the he was having his blood tests and was in the expressing room when an alarm went off in the unit. One that I'd never heard before. I ran outside and asked the nurse if it was the boys - she said it wasnt the twins and to go back in the expressing room. I came out a few minutes later and found out that a mum in a side room had pressed the emergency button as her baby had stopped breathing. I was speaking to his mum in the morning and she was so excited as he was just days from going home. The nurses told me that he just stopped breathing so they resuscitated him. He was ok but was being transfered to another hospital - not sure why but it normally means its not good news. I saw the mum as she was leaving  - poor thing looked so pale and drawn. She must have gone through hell in those few minutes.

Matthew now has a cold so he cant visit the boys incase he gives them an infection and he's gutted as he's managed to see them every day since they were born. Even if its been for 15 minutes at 5.30am before a flight! Luckily he has me to relay all the good news to him! One bit of genuinely good news is that Joseph made a leap from 40% to 25% oxygen which is great. I dont want to get too excited as we've seen him go down before and then he suddenly goes back up so we'll see how long that lasts.

Praying for a better day tomorrow - for all of us!


 A much more beneficial use of hospital tape