23-4-2008 - BABY'S DIARY - Week 5

My mood while writing this blog: n/a

WEEK 5

Mummys note; Im managing to be at the hospital from 12 noon until 8pm now (plus travel time), although i have to take regular breaks in the day room as im in a lot of pain. I had my spine fused years ago and the surgeon caused alot of damage, even before pregnancy i struggled to sit upright and now the pain gets unbearable. On Wednesday i had my appointment to check how im recovering from the heart failure. I couldnt make it in to hospital 2 days this week as im in so much pain. Id do anything to have DS home with me now, ive got his bed and everything all set up and ready for him. I feel like i have left such a huge part of me behind everytime i come home. By 11pm everynight im desperate to go back to the hospital and find myself crying for hours. Night times are awful, the seperation and loss is overwhelming, i cant sleep at all for worrying incase something happens when im not there.

Day 30 DS is upto 8cc milk. They arent increasing it too quick incase the infection comes back, and im really glad they arent rushing him. Its really good that he is tolerating the milk with no problems. Hes been pooping good to which is great news for his digestive system!

DS has gone 5 whole days on CPAP but we are having a lot of troubles with his breathing. On day 31 whilst holding him his stats all went down, the monitors were going off like crazy and he had to go straight back into the incubator and get caffine to stimulate his breathing. It was like tearing my heart out. I guess because of the weight gain id hoped everything else was improving as well.

Day 32 DS had a lot of As and Bs (apnoea and bradycardia). He had to go back onto the CMV vent as the caffine wasnt enough. I was just devastated as I really didn't think that breathing would be a big issue, although it seems that it is because the heart and respiratory system are interlinked, so the more problems he has with one, the more problems develop with the other. Due to his condition we really cant risk apneas affecting his heart rhythm.

He still has all the same monitors on but due to the breathing difficulties his blood gas is being closely monitored for carbon monoxide and oxygen levels. At one point he was trying to fight the vent but I think he is just too tired now. The gas levels in his blood are also affected by the heart condition, but it is so scary when his stats drop so suddenly. This is why he this vent is safest for him. I had a big chat with the doctors about this as going by my pregnancy book he should be breathing ok around about now. The Doc said all babies born before 30 weeks have ongoing apnoea as their brain hasnt developed enough to remember to breathe all the time. I pray that his breathing gets better so that his heart regulates.

We also had a chat about his iron levels. He has already had 4 transfusions in the 4 weeks since he was born, but he is still anemic. One solution is to put iron supplement into his milk, it made him poorly the first time they tried it though and it takes weeks before it works. The other solution is a thing called 'EPO', im not quite sure what it is, but it is meant to stimulate his red blood cells into producing more. They are suggesting giving him this until he is 36 weeks gest but the concern is that it will make the jaundice worse. The cells are still dying off quickly so DS's liver isnt able to catch up enough to finally shift the jaundice. I went to my first class back at university on day 34 - what was I thinking!?! I have a 5 week old baby who needs me more than ever after 2 hours I packed my bag and headed straight back to the hospital!

DS weighs up at 2lb 9oz! My clever boy has gained a whole 5oz this week and im so proud he is keeping it up! At the start of week 3 he was only 1lb 10oz, and I was told if he continued to lose weight there was a very real possibility he would die. Well, what a difference a few weeks can make! Well done baby ~~ mama loves you xxx