Roller Coasters

When I was small I was really afraid to go on roller coasters but I did it anyway. Even now the whole time I'm sitting there, tick - tick - tick - tick, climbing higher and higher, knowing that plummeting drop is coming any second, I am gripping the arms of the seat, holding my breath, asking myself why I got on this thing in the first place. 9 times out of ten I'm glad I did, and I want to go on more and more. Occasionally I go on a ride that jostles me around just a little too much or gives me an instant headache but those odds are pretty good if you ask me. Last night was one of those 1 out of 10 experiences. They warned us from day one that this would be a roller coaster - every day, every moment really brings new challenges and new developments. We got to the NICU later than usual last night and I was anxious to see our babies. Emma-Sky's pulse ox has been low for about 3 days, hovering in the high 80s and low 90s which is not at all how she was from the time she was born. They have her oxygen bumped up to 30 percent, sometimes 35 percent. (She used to be at the minimum - 21%, needing very little support.) Some of that is certainly leakage but still worrisome nonetheless. On top of that her stomach was very bloated. Adam pointed it out the night before last but we thought maybe it wasn't something to worry about. Luckily he is extremely observant and notices any and all changes that occur. Last night it was not to be ignored. We asked the attending doctor to come over and look at her stomach and he agreed it was "very full" and then proceeded to suction out 2ccs, one hours worth of breastmilk, from her stomach. Besides worrying that she's developing NEC, ("a gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel.") it's far from reassuring that we have to say "hey, something's definitely wrong with our daughter" for them to investigate further. And that's not to say we haven't been happy with the care they've been receiving or to discount our gratitude to the nurses who treat the babies they care for as if they were their own but there are ups and downs and days we're happier with some nurses than others. At any rate she was visibly uncomfortable, wouldn't hold our fingers with her tiny hand and just not herself. Adam kept his hand over her to comfort her and talked to her and she was so much calmer and more content while he was doing that. The doctor said we need to keep a close eye on what is happening and perhaps should do an abdominal x-ray. (again what if WE had not pointed this out!) We really wanted to reduce the feeding as well and they wound up stopping the feeding altogether after about 20 minutes or so. She was fine at 1cc, I don't know why they bumped them up to 2ccs so quickly.
As all of that was going on, literally in mid-sentence with the doctor at Emma's bedside, Lucian's heartrate plummeted to 80 (normally it's in the 140s) and his pulseox went down to 30 - numbers we have NEVER seen before. If you remember there was a night that he desaturated to about 55, when I was still in the hospital, and he was literally blue. This time he turned very red and it took them awhile to stabalize him again. We are getting used to them desaturating at times but his heart rate has never changed along with desaturation. I felt like a ping pong, trying to find out what to do for Emma-Sky and then bouncing over to Lucian waiting for him to stabalize again. We're also still worried about his PDA, he had an echocardiagram on April 13th that showed it was "small and closing" but we're not sure what it looks like now, a week later. The doctor confirmed today that it could have something to do with his heart rate dropping so drastically.

It was extremely difficult to leave last night, I cried while we were there and in the car when we left. We stayed at my Grandma's house to be closer to the hospital and to get back there today during the day shift. We were completely unprepared, no breast pump with us, so we had to literally hand-express it. Adam helped me in this messy process ;) and has not left my side throughout all of this. He is so incredible with both of them and finds ways to comfort and soothe them. He knows so much about everything (he's actually been asked by doctors on more than one occasion if he's in the medical field)and researches anything he doesn't know. They have the best Daddy ever and I am so incredibly lucky.
Today when we got there Emma's tummy was definitely better. She's not getting any milk for now and her x-ray came back showing a lot of air in her stomach but it seems that since they've stopped the feeding she's improving, the doctor attending today said it doesn't look like it will progress to NEC at this time. They will decide when and how much to feed her when she's more stable. Her pulseox is still in the high 80s, low 90s and she was getting her third blood transfusion today. Lucian had "an episode" right before we came meaning he desaturated and he was getting his 3rd transfusion as well. The doctors hadn't made their rounds yet so the doctor we spoke to said she will tell the other doctor about our concerns and they will go over them today. Tonight when we go back we'll follow up but again the night crew and the day crew are very different in terms of getting answers, etc.

We also asked about Kangaroo Care which is something we definitely want to do. You can click the link to read more about it, basically it's skin to skin contact which research has shown to have many benefits. The nurse said when they are a little more stable we can definitely do it.