@west07 It’s a constant rollercoaster. My baby was born at 30 weeks with severe IUGR, went to room air at 32.5 weeks and then had to go back on oxygen. We’re doing a room air trial today, the day before she hits 34 weeks. I have to remind myself that it’s not linear, it might feel like a step back but it’s just part of the journey.
@west07 Stay Positive NICUs can be crazy with all the beeping and poking and prodding. Stay strong for your baby and be thankful for the equipment that helps your bundle of joy heal. We were in the NICU for 5 weeks with a full term baby and it helped that the baby wont remember this time only us.
@mmair959 I know I hear these alarms in my sleep it feels like. I’m so glad to have my husband who is so supportive and is such an ally in this rough time. So glad to have the medical technology to make it and have both me and my son survive. My blood pressure was so high and while I’m devastated that he had to come so early, glad that we both made it.
lifewarrior
New member
@lifewarrior Yeah it’s just so hard. Was trying to nurse today and my LO was just sleepy so had to go through the tube. The nurse was being nice but said, “just remember it’s not you. You’re doing everything right” and I just cried. Days are rough
lifewarrior
New member
@west07 Some days are rocks, others are diamonds. Today was a rock unfortunately. It's scary but, Desat's are a somewhat common thing in the NICU and my little guy would have them so down that the nurses would tell us if it was a real event or something wrong in the sensors. As far as straining to poop or fart, that's very normal. It's called infant dyschezia where they haven't learned the order they need to do in order to result poop or fart. They'll figure it out eventually, it so I'm told.
@west07 I feel you!! It is such a rollercoaster ride. My baby girl was born April 26th at 36+4 because I had pre-e and prior to that chronic hypertension so she had severe IUGR and had stopped growing. She was 4lbs 2oz and here we are 2 weeks tomorrow and still in the NICU. She is 4lbs 5.5oz now and struggling with her weight as we had to switch to nutramigen due to her milk allergies. Her issues are with feeds and maintaining her body temperature. As of yesterday she had been taking all feeds by mouth for multiple feeds in a row and then we came in this morning and she didn’t take the whole feed and had to put the rest in her tube as she was sleepy. She also went back into the isolette a few days ago after being in an open crib for 2 days with no temperature issues. Today, she has the top popped again. She was doing well and then wasn’t. It’s truly back and forth and is upsetting. I have spent so much time crying. I have to remind myself that she will get it one day and that it’s not linear. However, I get it because it is definitely hard. I hope your LO comes home soon and same for me.
@lsjdgj It’s so hard with these little ones. Things can change so fast both good and bad. Sending good thoughts for your little one. I hope you are also taking care of yourself. That is something I have needed to remember. Feeling much better when I nap. We are three weeks in now and I’m getting real cautious given he has been doing pretty good on feeds. Getting most by mouth. Took all his feed via breast today. When we did that last time he needed more oxygen. So hopefully no backslide this time and continues the progress. Wishing the best for our little ones!
@west07 Yes! I am trying to remember that she may have setbacks and try not to get my hopes up but of course it’s hard when they are doing so well. We celebrated yesterday when she was taking all feeds by mouth so when she didn’t this morning I was a little discouraged. Hoping it’s just a small bump in the road and she’ll pick back up quickly. I’m trying to take care of myself as well. I try to take a nap every day if I can because I also feel better when I do. Thank you! I’m keeping the hope that it’ll be soon.
lovetowrite
New member
@west07 We thought we were getting released twice before we were ever actually released. It's a roller coaster. We had to ween off oxygen and as soon as we thought we were good, she would desat just enough to have to put it back on. Keep your head up - soon enough it will just be a crazy memory!