Tuesday, November 3, 2009

last night was hard (Day 16)

Amanda was feeding Bayta and noticed that after she burped her her heart turned blue and her pulse dropped and her oxygen levels dropped. Baytas lips also turned blue for a few moments. She said she had noticed the same behavior earlier that day. I of course went into daddy mode and we called the Dr. in to figure out what was going on. The nures corroborated Amanda's story, but like Amanda the first time assumed it was a sensor error. The consensus after we talked a bit is that she is having reflux. The plan is to watch her feed and see if we can recreate the event in the controlled environment of the NICU. Shortly after this she was weighed and we got the bad news about more weight loss. Again we expect some weight loss, but every time we get a result like that it means we have 48 hours more before we can get her out.

So just to sumarize we woke up hoping to hear "you are going home tomorrow" and instead we are going to be lucky if we are out this time next week. Add to that the fact that we aren't sleeping, miss our boys and Amanda is still feeling a sore from her major abdominal surgery and we felt like the Bad News Bears at the beginning of the season. We are now one of the "oldest" families in the RMH. Got to see James last night and he was doing well, the radiation seems to be making him a little nocturnal... and last night I got talk to him a bit, but I felt like I could have closed my eyes and passed out. I hope he didn't notice.

There are new families in the house and we introduced ourselves, and had to go through the "story" which is so wearing on us... and then we finally got back to our room and Amanda was so tired she finally let it out an we had a good pity party before I got her to bed. She had to wake back up in 1 hour to pump so I told her I would take care of the alarm and getting the bottles set up and let her sleep. I couldnt sleep and she looked so peaaceful I let her sleep a little longer... which I hope didn't mess up her schedule. but we made it to a one oclock feeding and that left us open for a 5:00 AM feeding and then a little rest before heading back to the hospital.

Amanda claims she is feeling better and has declined going back to Maternal Fetal Medicine. I am watching her like a hawk today and have even threatened to call her mother if I see even the slightest twitch of pain on her face.

On the way in to the hospital she pointed out that there is only a fair chance that we will be home for Jackson's Birthday. (November 8th) That made us both feel really tired and sad.

Yesterday while Amanda was feeding Bayta I took a class on baby massage. It was pretty interesting and I can see me using the techniques on Bayta and the Boys... I wish I had known more about these techniques earlier because I think it is hard sometimes for the dads to feel needed during the first few months with a newborn. But like so many things in this wonderful terrible place when we went around the table talking about our kiddos the lady next to me had just lost one of her identical twin boys. She was very sad, but at least she had another child that looked like she was gonna make it. It makes all our complaining above seem pretty insignificant.

Good news is that Ellis in the next crib over is continuing to get the green light! He may be able to get out of here this weekend or possibly early next week! I can see his dad is very cautiously optimistic. They are a terrific family and we hope they get out and stay out.


  1. Am praying that you guys get outta there soon. But, it's good that all of this is happening in the NICU environment rather than at home so they can watch her. Because once you leave the NICU you can never come back. So, it's good that they are watching the possible reflux. And, it wouldn't be such a bad thing if you guys have to go home on a heart monitor. That SAVED my life when we brought Baylee and Blair home. I was actually able to sleep and not worry about them in the middle of the night. Because it is LOUD and WILL wake you up out of a dead sleep.

    Big Hugs- Tiffany

  2. Have you guys ever participated in Parents as Teachers before? If not, you should look into it for Bayta. You'll get developmental information and great tips on activities (such as baby massage!). You get home visits from a parent educator (which is what i do). I don't remember how old you said your sons are, but most programs cover 0-5 years. let me know if you want more info! It could really come in handy once you get back home and settled.