Today is their "official" 1 month birthday. I'm not sure at what point you stop counting weeks (from Tuesday to Tuesday) and start using the date (15th) of the month. If anyone knows,let me know:-)
*big sigh* Yesterday was a rough day and I was very discouraged. I arrived back at the beach Wednesday earlier afternoon. Thursday morning, I checked on the girls and they just weren't getting better. Natalie's dopamine was up to 11 mics and her gas exchange wasn't good. Abby was still yo-yoing with her sats and blood pressure. I was just so sad and discouraged. I watched the children of my family playing on the beach. They were splashing in the water and anxiously fortifying sandcastles against the rising tide. I wondered if my little girls would ever splash in the water and play on the beach. My mind was full of maybes...Maybe they will need oxygen all the time. I couldn't see them running on the beach with oxygen tanks behind them. I thought of all the trips we wanted to take them on that we couldn't because you can't fly with oxygen. It was one of my worst "catastrophisizing" episodes. Anyway, I was quite upset and decided I just needed to see my babies. My sister was leaving around 1pm to drive back to Durham to fly back, so at 12:59ish, I decided to go with her,.
Sister and I met Ben at the hospital about 6ish. We didn't have much time because of the shift change at 6:30, but we spoke with the nurse practitioner. In general, the girls are not doing as well as expected. They would have expected them to be off the vents more and be more stable in their blood pressures and breathing. Unfortunately, they don't know why they aren't. Some of the various causes have been ruled out - brain bleeds or kidney or adrenal gland malfunction. The most likely culprit is an infection - which they can't isolate. They are both on antibiotics "just in case". The one bright spot was that the NP we spoke with was shocked to hear we'd only held Natalie once and Abby not at all. She said they needed to be held more and even if they were on dopamine (at low doses) we could. So, we planned to come back after the shift change so Ben could hold Abby.
We returned to the hospital after Sister left and we had dinner. Unfortunately, things weren't so good. Abby's heart rate soared to 230 and her O2 was up and down. Holding her was out. Natalie had several episodes of dropping her sats and apnea spells where she quit breathing completely. Her dopamine was also up to 18 mics. The only good thing about the dopamine is that there aren't any real side effects. So, it wasn't the best evening. We were both exhausted and went to bed soon after we got home.
The good news is that today is a better day. My dad and Peggy were here last night and left early to go to the hospital. A message from them later said the girls were better. My mom had checked in before I did and she said the same thing. When I called the nurse said they'd had a pretty good night (obviously after we left!). Abby was off her dopamine and had been put on CPAP about 4:30am. She was doing well aside from her usual yo-yo act. Natalie was down to 4 mics of dopamine and had no further apnea issues. She's also still on the CPAP. If they continue to do well, maybe we can hold them this weekend. It would be a great Father's Day gift for Ben.
Thanks for all your concern. I'll try to make the next entry shorter!
No comments:
Post a Comment