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 look...it 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

 

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

 Cuddle with Xander

Joseph playing with his daddy

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!

Joey

 Xander

 A much more beneficial use of hospital tape

Big boys

We've both been so overwhelmed by the amount of cards we've got from our friends and family - everyone has been just so kind and it's so comforting to know we have such support around us. We've also received some beautiful presents for the boys which we cant wait to give them when they come home - everyone has been so generous.

The weekend was mixed. On Saturday we got in to the hospital and I asked if we could give Xander a nose break. This means I hold oxygen to his face rather than have his hat on and it running directly up his nose. When the nurse took the hat off, it was clear that once again the hat was on too tight and the tube that runs off the hat had been digging in to his head. His head was completley dented in and was all swollen around it. I know their heads are soft still but this was absolutely unacceptable. I obviously had a few tears but more than anything I was so angry that no one had spotted it. The nurses are under staffed at the moment so maybe she wasnt looking at him as closely as I did but she should have been. Our babies are the yougest most vulnerable babies there so they should be observed at all the time. They need to stop looking only at the monitors and look at our babies. If he's suffering or uncomfortable then of course he's going to need more oxygen . I showed her his head and was clearly really upset to see it - she didnt directly apologise but for the rest of the day she was overly attentive and didnt really leave their sides. I'll be speaking to the matron again this afternoon and will need some reassurance that i'm being taken seriously. I'm fed up now of seeing these errors. The nurses are excellent and do care for the babies but something as tiny as their hats digging in cant be overlooked - its not acceptable.  I feel so guilty every time I leave them to go home and now I feel even worse as I dont trust the staff to look after them properly.  Rant over. Later that day, they also said Xander would need another blood transfusion.

Joseph was a little up and down on his O2 - he's still having his one hour off, 4 hours on but his O2 levels aren't really coming down much.

The doctors want to speak to us about a plan of action as they've plateaued this week - they're just not progressing. This will probably mean more of the 'last resort' medicine for Joseph and maybe Xander taking in his first dose of it. I really dont want this for them but obviously if they need it to get better then they must have it.

We were both quite down to hear that and I was so upset having seen Xanders head and news about his blood transfusion but there was at least some good news. Just before we left on Sunday they weighed the boys and they've both put on weight! Xander is 1100 grams and Joseph is 1080 grams - just over 2lbs! Well done my baby boys!

Xander

Joseph about to be weighed

Joseph - kisses from dad

Hair do's

I got in to the hospital and it was nurse Debbie on shift. Yes! She always looks after the boys so well. She said that when she arrived Xander was so swollen he couldnt open his eyes, he had poo on his sheets and his mouth was all dirty. He was on 40% oxygen. She said that his Sipap hat was on so tight that it had left marks on his head and swelling all around it. FURIOUS. There had been a trainee on overnight who obviously didnt know how to care for him properly. He was on shift with a fully trained nurse so she should have done something about it too and to be fair I had been telling the nurses the last two days that he looks swollen and nothing was done about it.

Debbie had changed his hat to a bigger size and cleaned his mouth and sheets by the time I got there. His O2 requirements dropped immediately which is great and shows he was obviously uncomfortable and struggling as the hat was too tight for him in the night which makes me so sad for him . So cross that no one had spotted this before. I hate any kind of confrontation but something had to be said so I explained what had happened to the matron in charge and she apologised and said she would feed back to the nurse looking after him. I told her that I now feel very nervous about leaving the boys with anyone I've not seen care for them before and she said she understood and would do her best to sort the situation out. Hopefully she'll think twice before putting a trainee on shift with the youngest and sickest babies in her unit.

Debbie had Xander down to 32% in no time - such great news. Joseph was around the same and the doctors took an x ray to check all was ok. It showed the same as before and they need to keep an eye on his very premature lungs for any changes. He also needs to put on weight as he's lost another 10grams poor little sparrow. They're going to look at his sodium levels to see if that would help.

Highlight of the day was watching Debbie look after our boys so so well. She thinks of every detail and its so nice to know that they're being cared for properly. She cared for them so well that she helped me give Joseph a little bath! I loved it! He wasnt so sure at first and then settled in to it. We washed his hair and she spiked it right up for a photo! He almost looked like he's laughing in the photo - so sweet!

We gave Xander a bed bath so as not to disturb him too much. We washed his hair too and moisturised their skin as it was a little dry from all the hot air being pumped in to the incubators. They both looked so much happier once they were clean and had their hair styled! Such a lovely afternoon with my babies.

Washing Joeys hair over the bath

Joey about to taste my milk on his lips - he liked it!

Spikey hair!

Looks like he's laughing along with us!

Xander having his hair washed

Xander with spikey hair - still quite swollen

Wobbles

Matthew had to go to Hamburg for work on Wednesday morning so he popped in to the hospital to see the boys quickly before his flight. He got there ridiculously early just to see them for a few minutes before he left but it wasnt great news. The nurses told him that they'd both been up and down for a lot of the night and that the doctors would be seeing them soon. I spoke to Matthew at the airport and he was so worried that he nearly didn't go. I told him that he should definitely go and that I'd make sure I got all the info from the doctors and update him every couple of hours. His voice was all shaky when he said goodbye which of course set me off! I kept it together and got to the hospital as soon as I could.

The doctors said they would keep a close eye on them both and wouldnt be doing anything more than that for now as their blood gases and tests were fine and showed no infection so they put it down to their chronic lung disease and just needing time to mature. Every time I speak to the doctors I either have to sit down or hold on to something almost as if i'm bracing myself for the worst and quite embarrassingly I realised after speaking to the doctors that I was holding on to one of the nurses hands! She didnt seem to mind although she walked away rubbing it so I think I may have been squeezing quite hard!

For the rest of the day and for all of Thursday, they were constant and seemed much more stable. This meant that the doctors left them alone which was a relief. Highlights include Xander weeing all over nurse Sophie when she was changing him and Joseph poo'ing all over her when she did him. That's my boys!

Matthew went straight to the airport to see the boys when he landed on Thursday evening and they were still doing ok. Having woken up this morning and called, it sounds like they were both a bit wobbly in the night again and Xander was up at 50% in the night although he was down to 40% this morning. He was at around 35% when I was there in the day so that's a bit of a jump. He'd also had a couple of apneas (heartbeat stops) so they were again keeping an eye on them. The apneas are quick which is good but horrible to see as the nurses rush over and check their colour and movement as the monitors are slightly delayed. I'm slightly dreading getting there today as I have a feeling the doctors will want to put a plan in to place to get our boys, or at least Xander moving in the right direction. I don't really mind so much anymore if they say he needs the same last resort medicine that Joseph had if it means he gets better. His face is all swollen and his nose all squashed from the sipap which is sad to see.

Joseph was on 3 hours on, 3 hours off but he's now on 5 hours on, 1 hour off as he wasn't doing quite as well. Come on lungs...grow strong for my babies.

Joseph

 Xander inbetween a quick sipap mask change

Joseph

Xanders little swollen face

Projectile poo!

The boys got through the weekend and they had a really good team of nurses which set our nerves at rest when we werent with them. Joseph was a bit more settled although very pale and limp and Xander was so up and down it was all a bit confusing. The nurses say its very normal but for some reason that doesnt make things easier. one minute he's needing 60% Oxygen, then he's down to 30% then back up again, then his heart rate alarms, then he's settled then it all starts again. They're both connected up to monitors so we can see exactly what's happening and he was setting off the alarms what seemed like all the time - high then low, on and on. 

I have two good memories from the weekend though;

1) After holding Xander for a little bit the nurse gently lifted him off me to put him back in his incubator. He's too little really to be handled too much and it disturbs him being lifted so he did a little cry and reached out his hand to hold on to something. He managed to get hold of my hair so tightly and wouldnt let go! It was such a funny sight seeing him holding on to me and so lovely as a part of me likes to think he didnt want to leave me - obviously not the case but it was so sweet seeing him grab on to my hair desperate to cling on to something. The nurse was using two hands to hold him, Matthew had Joseph and I was enjoying it too much to unclench his fist so I let him hang on for a few seconds...bad mummy!

2) This is a good one. Matthew was changing Xanders nappy and looked away for a second. At this precise moment Xander did an enormous projectile poo right to the other end of the incubator! Quite impressive for a little man! I obviously took photos and relished in the fact that Matthew had to clear it up! Well done Xander!

Today was a weird day. I decided to go ahead with my NCT classes as everyone says its great for meeting local friends with babies which is so important when the babies are home so you dont get lonely and have a good network of friends around you etc. So, I went to my first class today. I knew it was going to be hard as I'd have to explain why I dont have a bump and what happened but I wanted to go. The instructor introduced herself and then asked us to tell the group about ourselves and how our pregnancy was going etc...gulp. When it got to me, I did my best to pretend everything was fine and the twins arriving early was a little blip but i think my wobbly chin gave the game away! I didnt cry though which I was very proud of! The instuctor and all the mums were so lovely - asking sensitive questions but when she said "and how are you, how are you feeling?" I nearly let the wobbly chin develop into big fat tears but instead I said "still in shock" and laughed. I dont think a bunch of strangers really want to hear how I feel!

The class was about 5 hours long and when it finished I was desperate to get to the hospital so drove like a nutter to get there asap. (Matthew if you're reading this just ignore any penalty charges that come through the door!) As I got in to the nursery, Joseph was crying as he was having a blood test and Xander was crying as he was having an X ray. The nurse then said that Xander may need the same 'last resort' medicine that Joseph had as his Oxygen requirements were so up and down. Having held in the tears all day, the flood gates opened. Later in the evening they said that Joseph needs another blood transfusion.

Amongst all of this, we're trying to sort out renting our flat out, selling my car, moving house and what feels like a million other life admin tasks. Its probably for the best as otherwise I'd sit in the hospital every hour of the day staring at the two little one's not knowing what to do with myself!

This week WILL get better!

Sleepy dad

 Joseph

 Projectile poo!

 Xander - quick pic as sipap was being changed

 Joseph

Put your hand up if you can't wait to come home!

Double cuddle!

So it turns out I really do wish i'd shoved the doctor off Xander. He arm was all swollen the next day - they thought it may have been as he was leaning on it but it was because the canula was in wrong. Deep breath. Do not punch the doctor. Calm.

They took it out and another doctor put a new one in his other arm - poor little thing. His Oxygen requirement has gone up too so he's had no sipap breaks for a few days. The doctors think it's because he may have fluid in his lungs again so he's back on diaretics. This will mean he'll probably loose too much sodium again and need more in an IV...apparently having fluid on the lungs is something they grow out of but if he doesnt then he'll have to go back on to the big ventilator tube. THIS WILL NOT HAPPEN. He also had another blood transfusion so hopefully that'll help his oxygen.

As he's not been off Sipap for a while he now has a cut on his nose from the mask :(

The nurse this morning was giving him a little wash with cotton wool and warm water and was so lovely to him speaking to him so gently and stroking him. She took the mask off and put a different kind of prong mask in so his nose could recover. Some of the nurses there seem to love our boys so much. She washed his little face and it looked almost as if he was smiling. So nice to see his face again. His sad little eyes lit up for a bit which was nice to see.

By the end of the day he was in his favourite position on his tummy all scrunched up and he was saturating a little better. He was sucking his fingers and the nurse gave him a little dummy. It's so tiny! Like Joseph, he didnt understand what to do with it so let it hang out of his mouth. It's by his bed for when he's ready to use it. Come on baby Xander, we're praying you get strong again and that we can have more cuddles with you and see your little face. Sleep well my little boy.

Joseph was so sweet today, showing off with 4 hours off sipap! He loves stretching and yawning and doesnt cry when I change his nappy. He poo'd three times whilst I was changing his nappy yesterday! I wasn't sure what to do at first and thought there may be something wrong with him but apparently this is normal...I have so much to learn about being a mummy! I swear he was laughing at me whilst I broke into a hot sweat trying to change him.

I held the boys together for the first time day before yesterday..such an amazing feeling having them both down my top. Luckily there's quite a lot of room down there! Joseph could smell the milk and was trying to niggle down and Xander's mouth was hanging wide open so I had to hold it closed for him (as it makes his sat levels lower when its open) so it was a little bit awkward but I'm desperate to do it again as soon as Xander is a bit better.

In other news, the boys have a new little cousin!! Baby Molly was born on 1st Feb and is just beautiful! She weighs 7 lbs 15 and has so much hair! She has no tubes coming out of her at all as she's so healthy and is just perfect. Funny how that's now how I judge how healthy a baby is! Can't wait to introduce her to the boys one day. Luca knows his cousins names and with his little lisp, they're Thander and Jotheph...love him!

I've just read over some of my entries and it's odd as I spend the day being so emotional - up one minute and down the next, trying not to get too upset or too happy as things can change so quickly but I write so factually...the truth is that by the time i'm home i'm so tired, I have no energy left to think about how or what i'm writing! Hoepfully that lets me off the hook with any typos too!

So relieved it's the weekend and Matthew will be around when we see the boys  - he makes everything seem ten times lighter and easier to deal with. He also makes the nurses laugh (such a charmer) which is great as I think that the more they like us, the nicer they'll be to our boys! Here's to a good weekend ahead with our little monkeys.

Xander with puffy eyes and cut on his nose from the sipap

 Joseph having a good stretch

 Kisses from daddy