Back on the Rollercoaster
NICU 13
4 weeks old footprint
Day 25 - 28
Gestation 26 - 27 weeks
Today Sylvie and I went to the mall and Rhyme time at the library. We always have our Monday and Friday morning activities. I don’t want to give them up with her, she needs her mum time too. It’s a really difficult to balance both emotionally and organisationally. Sylvies in one place, kayden in another, Lee and I both back and forth. It’s a never ending juggling act where everyone gets the passed by. Literally, they’re in your arms and then you have to let go to hold the other.
There so much going on in this circus before we know it we are day 26. It’s the number of days Sylvie was in SCBU. I remember being there everyday, all day with her. I remember thinking it was so long, felt like days and days in end.
I know now how strong she was. At day 26 with Kayden we are at the very beginning. We are so far from going home. He is just as strong as his sister but he is way more undercooked. There is so much more to this microprem journey then we even knew. Brain scans, heart scans, X-rays, uvc/uva umbilical lines, central lines, blood transfusions, ventilators, NIPPV, CPAP, continuous feeds, surfactants, steroids and more. It is a rollercoaster and a circus all in one giant nonamusement park we call NICU.
Today I’m having some trouble getting cover for Sylvie so I can get to the hospital Daycare has space for us and she went in for an extra day. Daycare has been incredible and very kind to us.
Kaydens doing good this morning, the usual number of self correcting Brady’s and desats and only one red apnea. He gets weight at 660grams and the nurse did some wonderful foot print keepsakes.
Then out of nowhere it changes and he starts having more desats and apnea’s. He is really struggling now and they put the NIPPV back. This time he lasted 3 days on the CPAP alone, a good second try.
The next day is pretty quiet, on the NIPPV still with no red apneas. His belly is looking really big and red and his cheeks seems puffy.
Kayden is now 4 weeks old!
To celebrate we took a big step backwards, because you know, that is NICU life.
He is having lots of desats overnight and gone up to 70% oxygen. His belly is looking worse and he will get an X-ray today. There is also talk of a blood transfusion again.
Half way through his second blood transfusion and he is looking much better, his skin is a nice pink and his oxygen is down to 58%. And then NICU rollercoaster dips and he has a big apnea turning him blue. I can’t watch this happening again. My heart can’t take it. I called Lee and decided best to tap out today. He will come in after dinner for a check up and cuddle.