We wake up early to go to NICU for RT’s 3rd week! We enter the NICU, nurse tells us he is so swollen he has a yeast infection in his neck folds and under his arms, his edema is much worse. There is a edema lump on the right side of his crotch. When she touched it during cares over the night he got angry and his heart rate dropped. He has Puffy legs too.
We watch him and the clock ticks over. It is his 3 week birthday! Continue reading “August 11 2016 3 week birthday”
Came in this morning and RT was angry. Super wiggly. Lower lip quivering so probably crying which was the first time I’ve seen this. Noticed he had fluid coming out of feeding tube. Told nurse she sucked out his stomach with syringe. He Has dark fluid in stomach so probably blood+ stomach acid. So likely irritation from medication or tube being in the wrong spot. X-ray is here now to check. Shows proper placement for everything.
I Found a piece of tape in his mouth too so they couldent have helped.
Changed diaper and repositioned. Some pee. No poo anymore now that feedings have been stopped for a few days.
He is happier now though.
Probably going to do DEERS next week. Tomorrow is his 3 week birthday and appointments, and weekly rounds with RT’s team. Friday is cranial ultrasound. So maybe next week there will be a bigger opening so I don’t miss stuff. Plus it sounds like I might be able to get birth certificate early next week. Might make it easier without having to do repeat trips. I am told his social security card arrived up in Alaska today!
My boy has a social security card!
Echo cardiogram and X-ray this morning. To check status of heart lungs and PICC line. It seems the PICC line may have migrated. His IV was looking like it was bleeding so had to get pulled for risk of infection.
1724 Just finally talked to Dr. There has been 0 change in PDA. We will start the 2nd round of ibuprofen soon. Dr says first round is 60% effective 2nd round adds about 15% so we can Continue reading “August 8th 2016”
Blue angels have been in town for a week practicing for the show they do in Seattle for Seafair/Fleet week. In the past I always was into them but I found myself refusing to look up. I would feel guilty if I looked at them because RT is sensitive to sound.
I am worried they will be too loud and stress him out.
I did not want to take pleasure in something that was disturbing my son’s rest. He seems agitated when loud noise happens in the room.
Go away blue angels!
I’m one of those people now…
One of the first days the blue angels were practicing we were in the NICU on the 6th floor. He didn’t seem to bothered by the sound, I am probably more stressed out by the sound than he is. The building seemed to block out most of the nose. After they did a few low passes without him de-sating I worked up the courage to take a peek out the window and take a picture. He immediately got jealous that I could see them and he couldn’t, and started to de-sat.
After that I didn’t look out the window anymore when they went by and he was fine.
Maybe someday we can see them as a family.
You are going to be a handful amazing, I can’t wait RT!
When we came into the NICU this morning his weight was up to 930 grams! He is over two pounds! He has put on a half pound! I look at his ventilator settings and it looks a little different. There is another row of information. The nurse comes over amd tells us the news. They have put him on NAVA with EDI. Now there is a 3rd EDI line going down his throat that measures the signals his diaphragm is receiving from his brain then assists with the breath he is trying to take. Neurally Adjusted Ventilatory Assist (NAVA) Edi – the electrical activity of the diaphragm. So it is just allowing him to breath while he tries to, making him do more work.
More info, more settings and more to learn again. I am happy they are allowing him to show how much breathing he can do. When he gets tired the system kicks in and does back up breathing at the set parameters. He seems happier on this setting.
I think this is a much better option than trying to extubate on the third day of being alive. I’m surprises the Dr. tried so early on to make him do so much on his own. I have trouble falling asleep tonight thinking and wondering the reasoning why.
I ask the next day and find out there is a 50% chance that he would have been able to breathe on the non invasive ventilator which is why they tried removing it so early. Gain is better than the risk in the Dr. eyes.
I promise RT is under the blankets keeping warm!
Nurse kindly offered to take our first family photo!
I already posted the photo, but really it deserves a post of its own!
Yesterday we saw two guys try and pay with a fake 100$ bill at ihop while we were getting lunch. They both left then, They called the cops but the police never came. One of the guys ended up coming back and paying for the meal wit reAL money. I wonder if they knew it was fake but ended up feeling guilty?
0200 mommy is pumping. Then ambulance after ambulance cop car after cop car drives past our window and stops around the corner infront of hotel. Eventually it quiets down and we are able to get to sleep till the next pumping session at 5am.
Went and got a po box took much longer than we thought it would because the computer was not working. His blood gas numbers have been high so they continue turning up ventilator. Install a new IV today and start him on IV ibuprofen and blood transfusion number 5. This could also help his blood gas numbers get rid of Co 2 more efficently and require a lower oxygen percent on vent.
Start up emulsified lipids again. Another cranial ultrasound today to look at IHV.
2000 It’s time for cares. Temp is good, diaper is dirty but the change goes without a hiccup.
Time to get weighed again RT, the nurses start the weighing program on bed, lift baby, bed zeroes out, replace baby, 890 grams. That’s too much, we try again 820 that’s weight loss. We try again, this time we all agree he gets weighed accurately. 840 grams! Every time they lift RT to zero the bed I joke about how he thinks he’s flying. His little arms shoot out and start to wave about searching for something to grab onto. Good job RT, still growing!
0500 I wake up, shower then head up to NICU, RT is two weeks old today!
I arrive and see his vent settings turned up. What has changed?
On the board his weight is now 835 grams! Wow he just keeps putting on weight!
The nurse tells me his co2 levels are elevated out of limits so they raised his support to try and get it down.
I stare at little RT through his parted incubator curtain. He looks comfortable, they began swaddling him more. His little foot peeks from his swaddle blanket, Continue reading “Aug 4 2016 0712 happy 14 days!”
Preemie Pop 