Day 44 - Transitional Care

It’s been really hard trying to come to terms with everything happening in my world outside of my babies so I'm sorry for the silence! As much as I’ve needed and wanted to grieve properly I've just had to stay strong for the sake of my family. I also know deep down this is what my brother would have wanted!

Since my last update at a lot has happened... I suppose the first bit of excitement happened two weeks ago when all the boys were moved from High Dependency up to Special Care (the final low dependency room in NICU). I still can’t believe in 5 short weeks they have progressed so much, the time has literally flown by! After the first week in Special Care Sam and Ru were taken off all monitors other than an apnea monitor which monitors their heartbeat, and they were all moved from incubators into cots. I then had great pleasure in giving them their first oral feed by bottle, a major milestone for a prem baby as this is when their suck, swallow and breath reflex kicks in! They have all taken to it amazingly well. I’ve unfortunately had a bit of a personal set back with my expressing and due to problems with my breasts I’ve had to stop all expressing and breastfeeding. It was a very sad thing to decide to do but I just felt that I needed to be fit and well for my boys and the best thing to do was to formula feed them instead. I luckily managed to express and freeze a large amount of breast milk when I was expressing so currently they are on half formula and half breast milk so their digestive system can learn to tolerate it. They have gained a great amount of weight too and are now between 4lb 11oz and 5lb.

Josh and Zac have had a little bit of a difficult time since being moved. They picked up another infection which has had a knock on to their breathing and caused other blips in their progress. They had to go back onto oxygen, have a blood transfusion and start diuretic medication to relieve severe water retention. I have found this very unnerving at times but they seem to be doing a lot better now and have actually just had their oxygen turned off today. 

The biggest news in the last couple of days though has to be Sam and Ru’s discharge out of NICU onto the Transitional Care ward at the hospital! I have been waiting for this day for a very long time. So I'm now readmitted on the ward with them starting the final stretch before we go home. The point of Transitional Care is to establish their feeding and get me used to handling them etc. Because they are still so small taking a bottle really wears them out so they have to gradually build up to having a bottle at every feed. Currently they are have alternate bottle feeds and tube feeds. As soon as they are taking all feeds by bottle we can go home. I don’t know how long that will be but hopefully not more than two weeks. I am also crossing all fingers and toes that their bothers will be well enough to come and join them up here so we can all be discharged together, if they’re not we’ll either have to come back when they’re ready or they’ll be discharged straight from NICU which is not ideal. 

The last 48 hours have been crazy looking after the boys properly for the first time. Ward 76 is a very hands off ward, the policy is the staff are here to help when you need it but they let you do the care on your own. I have literally had about 6 hours sleep in the last two nights. My new routine is nappy changing, feeding, winding, sleeping and then starting all over again. I literally start one off and as soon as I'm done I start the next and by the time I’m finished I have 40mins to an hour before I have to start again. If and when Josh and Zac come up here I am going to have to get some help as there is physically no way I am going to be able to feed them all and get sleep!

I have tons more to tell you but I have to go and prepare Sam’s next feed before I start running behind! Until the next time...