Thursday, 29 March 2012

Separation anxiety

There are so few babies in the NNU at the moment that the boys were the only babies left in the green room. It wasn't worth them keeping the room open just for our boys so they've moved rooms again. We're now in the blue room..this is otherwise known as the departure lounge! This is where babies just need a little bit of extra help before heading home..I'm now one of the mums I used to stare at through the window. I pick up my boys and I cover them in kisses, blow rasberries on their tummys and make stupid faces at them to try and make them smile. I love the way they get all excited and flappy when I tickle them. It doesnt happen very often as they're mostly asleep but when they do open their eyes it's so lovely to see them holding eye contact and acting like other babies.

They had their immunisations yesterday. I couldn't delay it any longer. I asked nurse Michelle to come in and watch over the boys (ok ok, hold my hand) whist they were being injected. I held on to Xander whilst he went first. He cried, then I cried and Michelle gave me a big hug.  Michelle then held Xander whilst Joey had his done. He screamed his head off and Xanders eyebrows went up and down and he desaturated on Joeys behalf! I held Joey and we both calmed them down. It wasn't nice but it was nothing compared to the blood tests, transfusions and other tests they've had. My brave boys.

I made the mistake of asking one of the nurses when they thought the boys would come home. She said she thought Xander would come home first as he was doing so much better...I've seen other mums go home with one twin at a time but as our boys have been pretty much level pegging it didnt occur to me that i'd take one home before the other. I couldn't stand the thought of leaving one of them there. I feel like i've been waiting all this time to walk out of the hospital with both my boys - it's such a happy day and we leave the hospital as we should. All four of us. To leave one there would just be horrible. I'd also not be allowed to bring one in whilst I visited the other. The nurses solution..dont visit the one in hospital! Not happening. I feel like i'd be abandoning joey if I left him there. It wouldn't be right to see him in his own cot without his brother there. I didnt make it to the car or loo this time. Instead I just cried as I held both their hands and told Joey to try really really hard to get better quicker.

Weirdly, the boys did a flip the next day. Joeys O2 levels went down and Xanders went up! Good boys - they want to come home together so they're just evening out! Massive sigh of relief...for now.




 Xander trying to hold Joeys hand..or wake him up

 Joey fast sleep and not playing!

Sunday, 25 March 2012


Xanders eye was checked and it was still mild - a good sign. A different doctor examined him but said that he thinks the ROP had lessened compared to the way his colleague had described it which is great news. He's going to examine Xanders eye every week for the next 4 weeks to ensure it's not developing into anything more serious. So everyone keep those fingers crossed!

The boys are now due their immunisations and we were told that they can feel quite poorly afterwards so I've been stalling them a bit. I want the boys to be on top form when they have the jabs and Joey has been so snuffly that I dont think it's a good idea to do it now. He needs to be suctioned a few times a day to clear his nose as he's all blocked so having the immunisation at the same time would have been a bit too much I think. Dr Sophie has decided and did not sign the consent form. I'm not a very popular mum with the doctors!

The boys were also tested for reflux as they desaturate (low O2 in blood) when they feed and have started vomiting after/during feeding. The test involves a PH probe going down a nostril to their tummy for 24 hours. They have an x ray to check its in the right place and the other end is attached to a machine that measures the acidity in the tummy. They already have nasal cannulas and a feeding line up their nose so poor things have been stuffed full of lines. We've been doing quite well with getting them to feed from the bottle managing to stay awake but they nearly always throw up after. Today I thought i'd mastered it by winding Joey regularly throughout his feed. I had him on my shoulder after the bottle and was feeling very happy with myself that I'd got a whole bottle down him when he did a burp...good boy I thought. Then he made quite an unsual noise and...vomcano. They have medicine to help with the reflux but apparently it takes quite a while to fix itself.

Today we got to the hospital and walked in to find that the boys were back in the pink room - intensive care. My heart literally skipped a beat. They both needed blood transfusions as their HB levels were low so the doctor was putting cannulas in them. Xander was having an ECG as they heard a heart murmur. They heard a heart murmur in Joey yesterday. What a horrible sight to walk in on. I obviously cried and Matthew managed to hold it together and even helped the doctor get the cannulas in. He gave the boys a sugar solution which calms them down whilst it was going in. I stood behind the doctor not looking and holding on the alternate baby giving him hundreds of kisses telling him how brave he was. The doctors dont seem too worried about the heart murmurs as the ECGs came back fine and they just need to keep an eye on them. Thank God Matthew was there to help get through all of that. I'd have needed some Oxygen of my own if I was there on my own. They were going to do the immunisations today but didnt because of the transfusions. That means they'll probably have it tomorrow or Tuesday when I'm there on my own. I'll do my best brave face (then go and cry in the loo).

The boys went back to the medium dependency room once their cannulas were in. I dont ever want to have to go back in that room again.

The boys are doing brilliantly for weight gain..Joey is 4 lbs 14 and Xander is 4 lbs 9. Some of it may be fluid retention but overall they're doing really well. My little micro babies are looking better and better and will soon be competing with all the other giant babies we see every day.

Xander being burped (lucky I didnt capture what followed...)




 Sleepy Joey

Monday, 19 March 2012

Rocky road...again.

On Wednesday the boys were 2 months old.  Matthew called from the hospital in the evening with some amazing news...the boys were moved out of intensive care!! They moved to the room next door - now called the Green room. The boys are still needing the Oxygen but the doctors decided they're not critical anymore. This was the best news we've had in a long long time and there were a lot of tears from us and our families too. Progress at last! I loved walking into the green room on Thursday morning to see my boys new home. The other mums in the room are a little less stressed out and it's much calmer so I already feel more relaxed. The boys are still alarming high and then low quite a bit (totally disturbing the other mums peace and quiet!) but the doctors say it'll just take time for their lungs to grow and grow. They may well come home on Oxygen anyway.

Our sighs of relief weren't long lived though. On Friday the doctor wanted to speak to me about Xanders eyes. We went into the parents room and I braced myself as I knew it was going to be something serious. Every two weeks the boys have eye tests. Any premature baby is at risk of developing ROP. This happens when they're exposed to large amounts of Oxygen. ROP when not treated can lead to blindness so it's not something you ever want to have to deal with. So far the boys had been fine but Dr Richard very calmly said that he had seen mild ROP in Xanders right eye. I immediately obviously wanted to cry but held it in and said "Ok, thank you" trying to wrap up the conversation so he'd leave the room and I could be left alone to sob! He didn't leave and instead gently explained a little bit about ROP and that it was a good thing that it was mild and that Xander will be tested again on Tuesday to see if it's developed. It can sometimes resolve itself or stay mild or get worse. If it's got worse then he'll have laser therapy or surgery at Tommys hospital. ROP mostly only develops further up to 36 weeks so they're all hopeful that it wont have got too much worse as they're now 36 weeks.  I managed to hold in the tears until the car where I called Matthew and told him everything.  We're both going in to hospital tomorrow morning to await the results. I dont think we'll actually take a proper breath until we get the results. We're both trying to be positive about it but it's in our minds all the time.

On a selfish level, it feels like another kick in the teeth. Just as we celebrate moving out of intensive care, there's another blow. It's relentless - this rocky road had better be coming to an end soon as I'm not sure I can maintain this high level of stress!

Matthew is amazing and deals with my mood swings brilliantly! He gave me such a lovely card for mothers day as well as some lovely presents. I had a lovely cuddle with both of them and Matthew did the nappies. I'm a lucky mum to have such beautiful baby boys, love them with all my heart.

Joey and his bottle

 Boys sharing a cot!
 Joey spotting Xander in his bed!

 Bath time
 Mothers day card made by the nurses


Wednesday, 14 March 2012

Moving house...streeeesssss!

The boys had been doing so well in the last few weeks that the nurses were starting to talk about moving us into the purple nursery...I was so happy that we may finally make it out of the intensive care room away from all the alarms and stress but asked the nurses if we could delay to after the weekend so that I'm there when they move the boys and I can make sure the new nurses look after them properly. I didnt want to be busy moving boxes whilst my boys were being moved. I needn't have worried. 

The move started well as the packers and movers turned up on time and we helped pack up our entire flat to move into a lovely house in Richmond. After a couple of hours, I popped into hospital mid morning to say a quick hello and check up on the boys. As I got there the nurse was weighing them. Xander has gone up to 1500 grams and Joey 1660 grams. I was so happy at first but then realised it's because he's(joey) retaining fluid. He's all puffy and swollen especially on his hands and feet. This comes as no surprise as they're trying to reduce the diaretics (helps to drain fluid from the body) and he's obviously not quite ready yet.

As we got Joey dressed again after his big weigh in, he started alarming. He was desatting lower and lower and we had to get the facial oxygen out to help him. They're both now on O2 cannulas but even turning that up didnt seem to help. I held on to his tiny hand and I sat there staring at him willing him to take big strongs breaths.  He finally sort of sorted himself out but kept having fleeting desats (alarming due to low amounts of O2 in the blood) and they were much lower than they should have been. The last few weeks have been so lovely seeing them doing so well and I was finally getting happier in myself. I wasn't prepared for the boys to take a step back. The doctors came over to see Joey and said they needed to do some tests on him. More prodding and poking. We suctioned his nose as now that they're in hot cots (open cots with heated bases) they've both got colds. The suctioning helped but only for a few seconds. He was still alarming even though his O2 was turned up higher than he's ever needed and by now the doctors were ordering all kinds of tests. 

Just to add to the stress, Matthew called saying that he couldnt find the car keys (which he needed to move the car so the removals men could park their van at the new house). I looked in my bag and I'd stupidly taken them with me. The doctors needed to do blood tests on Joey and put a cannula in him and as I can't watch them doing that to him I took the opportunity to drive back to the house to give Matthew the keys. I drove back in tears just thinking about what was happening to Joey but was a little bit reassured by calling the unit and speaking to one of the nurses who told me Joey had fallen asleep. At least he wasnt crying. We stood outside the new house and Matthew sweetly wanted to make a bit of an occassion of moving in to our new family home so we opened the front door, Matthew picked me up and carried me over the threshold, took two steps inside and then he headed to hospital whilst I helped the removals men!

Matthew's much better at dealing with the boys when they're ill. He can watch the blood tests and doesn't get too emotional about it all. Or maybe he hides it from me. He called as soon as he was there to say that Joey was fast asleep and didnt even cry when the cannula was going in. The doctors were going to treat him with anti biotics incase he had an infection, increase his diaretics and wait for blood tests results. As soon as the removals men had loaded up our new house with boxes I joined him at the hospital. The results had all come back negative for a virus but they said he needed a blood transfusion to help with his low O2.

I gave him so many kisses all over his head and told him how much I love him and how brave he was. Braver than me that's for sure.

The next day, Matthew stayed at home for a bit to unpack whilst I went in and saw the boys. Joey was having his transfusion and seemed relatively peaceful. He opened his eyes and I'm sure it was wind but he looked like he gave me a little smile. I felt this over whelming urge to pick him up, hold him tight and give him a thousand kisses all over his puffy little body but instead I gently kissed him kiwi head and again told him he has to be brave and that one day I will take him home and spoil him rotten and he'll hopefully never have to go through anything like this again.

The joy of having twins is that as soon as one seems to be doing well, the other takes a turn. Xander started alarming low and was looking quite pale. They ordered some blood tests and after a while decided that he too would need a transfusion. He wasnt quite a bad as Joey but they wanted to do it on the safe side.

I spent most of the weekend burtsing into tears. I thought we were over all of this horrid bit. The boys were doing so well and it feels like we've taken a step back again. No one's mentioning moving nurseries and I can see other mums all laughing and playing with their babies through the glass whilst I stand watching my babies alarming. It all seems so unfair. I'm starting to feel a bit institutionalised and the stress of being in the intensive care unit is getting to me. All day I see parents staring at the babies with tears rolling down their cheeks (although they're never there for long as their babies all seem to get better), alarms being set off, christenings being held in the room incase babies don't make it and it's all getting a bit much. My babies have to get better soon, they just have to.

Matthew keeps reminding me that this is very normal for premature babies to take big leaps forwards and then a few steps back. Then repeat it all again. He's right - I just need to remember that they're very premature so this is to be expected. Our babies aren't sick like some other babies, the worst condition they have is chronic lung disease and they just need a lot of support for now.

After all that doom and gloom we did have a little bit of progress. We tried giving both boys a bottle and they did amazingly. Xander especially! The technique for feeding them when they're so little is quite tricky and you have to be careful not to choke them. Nurse Debbie showed us how to lie them on their side, open their mouths and make sure the nozzle of the special bottle is facing upwards and then push the bottle right into their mouths. If they choke or cough then you have to quickly lift them up and stretch their body out and blow on their faces incase they start losing colour...! I made Debbie stand by me the entire time and they both did so well. She showed us how to burp them too. I had Xander on my shoulder and after trying to burp him for ages I just left him there as it was lovely to feel him on me. After about ten minutes, I heard the most almighty belch and thought Matthew had arrived but it was Xander! I never knew such a little micro baby could make such a loud noise! So, hopefully feeding wont be an issue for them. This is one of the markers you need to have ticked off before they can come home so hopefully they'll continue to do well.

We need these lungs to keep getting better now babies. Come on boys...lets have a good week xxx

 Trying to see if Matthew looks like the boys!

                                              Matthew and Xander baby

 Xander and his bottle!
 Xander pre belch!

Wednesday, 7 March 2012

Bottoms up!

Another couple of lovely days with the babies.  They're getting chubbier cheeks by the second which is great news! Weigh days are Thursdays and Sundays so tomorrow is another big day for them. I'm sure they've put on more weight as their feet have more padding and their bottoms arent just skin and bone anymore. If they take after their dad then their bottoms still have a lot of padding out to go! They're still the smallest babies in the unit and they only just fit into their clothes but they're definitely making progress.

Xander disgraced himself yesterday. I was changing his nappy and although it looked like he'd only done a wee, as soon as i lifted his bottom there was an almighty explosion of poo all over the incubator and all his wires and probes. After clearing that mess up, I lifted his bottom again and once again, he let rip and filled my entire hand with poo! He must have literally poo'd out half his body weight! Nurse Julie told me that earlier in the morning, Joey had done exactly the same thing...nothing wrong with their bowels then!

We move house this weekend and life has been hectic trying to get everything done so I'm really looking forward to getting settled. More importantly i'm getting excited about setting up the boys room! I finally feel confident that they will be coming home one day and I can't wait to get their cots up and ready for them. They'll share for the first few months as they seem to love being next to one another. If anyone has any good best buys for babies please let me know - I havent had time to read any baby books so I'd love to hear everyone's thoughts. My babies will come home one day...champers will flow!




Sunday, 4 March 2012

Cuddles and Kisses

Both boys are now off Sipap! I Sipap! The only thing still on their faces is the feeding line. It's early days and they may have to go back if their lungs get tired but so far they've done amazingly well. It's a massive step forward for them and I'm so proud of them.

We weighed them on Thursday and they hadn't put on any weight. The nurses think it's probably because of the diaretics they're on. Diaretics help drain fluid from the lungs and body so it's no wonder they havent put on weight. Now that they're off Sipap they'll look at reducing diaretics and see how their lungs cope. If all is fine then this should help them to put on weight. We weighed them again today and they had put on a tiny bit so slowly slowly they'll get there.

Matthew held both boys for the first time on Saturday. It was so lovely to see them looking up at him. The boys found eachothers hands and held on to eachother as daddy held their little heads. Holding your baby for the first time is always an emotional time but he's waited so long and didn't quite manage to hold in the tears. It's good to know I'm not the only emotional wreck in the room!

Highlight of the week; breastfeeding the boys! It's incredible how such tiny babies know exactly what to do - I certainly didn't! Nurse Anna helped us and it was so lovely to bond with them. I felt like I was doing something to really look after and help them. A lovely weekend with my little fox cubs.


 Sleepy Xander

 Matthew holding the boys for the first time

 Nurse Anna helping Xander in the bath

 Matthew actually sticking his head in the incubator giving kisses to Joey!

 Joey looking like he's smiling..probably because he made himself laugh as he just sneezed all over his daddy!
 Xander (and his funky hairdo thanks to nurse Debbie)