Day 58

JETT

My lil babe looks good today, his HB is a little low at 97 and because there aren't many changes being made, Dr D has cut back blood gases to only once daily and his full blood count every 3 days instead of every 2 days so they aren't taking too much blood off him. His albumin was 19 so he is having some transfused tonight the nurses will scrub it into his line. Ventilation is still the same, it depends what nurse is on as to what his oxygen sits at. Some prefer to leave it higher to prevent frequent desats, others test his boundaries a bit by leaving the oxygen lower. Although he does desat frequently, he almost always recovers quite well on his own.

He had a wash and weigh today. His weight was 2106gms.. It is not an accurate weight though, he has so much edema, but still, some of it is him and he has put on a bit of weight... They are still using the weight of 1.6kg to calculate med doses.

I forgot to mention, last week I measured his length, although it's not really accurate, he was about 41cm :). Last time he was only 37cm, he's definitely getting longer. His HC is about 30cm. My babe will be 34wks adjusted tomorrow.

MUMMY

I feel a bit emotional tonight. It's hard watching my babe get stronger, but know he's still so sick. He fights the ventilation tube, I just wish he was strong enough to come off it. I love my baby so so much. He hates me reading to him, but I keep trying different books from time to time and tonight I found one he liked. His sats were sitting on 96% :) I am about to go back soon. I miss him even in the couple of hours I come back to have dinner. I hate that I live on a time schedule and I can't just eat when I want. (Well I can, but eating means being away from him) I am so over expressing. I got some avantan cream from the dermatologist today, and there is a crack in my nipple, so I will use lanisoh on that. It's so painful. I dream of feeding my baby normally. It just seems so out of reach. I have to believe though that this is all worth it and we will look back on this in years to come and it will be such a short journey compared to the rest of our lives..