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!