The highs and low of the NICU rocked me today. My little boy was born at 34+4 due to pre-e. Yesterday I was crying happy tears since my little one had their first breast feed that was his entire feed! I thought it was all up from there but then today had desaturations that scared me and my husband so much. Had to turn up the oxygen to 0.5 L. I know it’s not much but I just cried so much. Seemed like he was straining a lot to poop. He’s getting a work up. The x ray was the same as last time and labs were normal. Waiting on the respiratory panel. Just so hard these days. I thought we were doing so well.
@west07 If there is anything I learned while in the nicu it's try not to get too high or too low. It really is a roller-coaster. Hope your son comes home soon!
@west07 He’s learning this journey just as you are. The one thing I learned by the NICU is it’s just as hard for the parents as it is for the little babes. Hims wasn’t quite ready yet so he’s gotta learn how to hang out here on the outside! 1 day inside is equal to 3 days outside, so it’s a everyday up hill for them. Sending hugs and prayers
@west07 This happened to us just a few weeks ago. The worst thing about NICU life is that it consistently feels like one step forward, two steps back. My daughter had a few random episodes and set backs and I felt she’d never be here with me- but here she lays next to me at home now. I wish you and your son all the best and hope he goes home with you asap!
@keamy Yeah I just have to realize everything is on his time table and he’s a strong guy just have to be patient. Glad you are home with your little one! There is hope for us.
@west07 Hi, same thing happened with my daughter. She was off oxygen for 2 days and then back on one morning. I used to dread parking my car and walking into the hospital. Paying for your little boy, he will come home soon!
@robertina I feel this sentiment really deeply. When my wife and child were still in the hospital (wife had severe pre-e due to chronic hypertension, and kid had an array of issues) I used to leave to go get us food, go to work, etc. and when I had to come back I had this deep foreboding. Definitely wanted to be with my family, but still had to struggle past those emotions every time I parked and had to go in.
Kid is healthy now and everyone's at home, 4.5 months since discharge and she's got a G tube and is still experiencing a lot of feeding issues/nausea/reflux. One day at a time!
@ellaharris3 So happy to hear that your baby is doing well! I think the worst part of someone you love being at a hospital is that dread, just not knowing and not being able to be with them every second. I would stay at the bedside in the nicu usually from (daytime) 8-5 then 7-9 but it still didn’t feel like it was enough. I had a mental breakdown one night that required a lot of intervention from my family (basically I wasn’t sleeping and I couldn’t function, just would cry and cry hysterically for hours) and after that, I tried to prioritize my mental well being.
@west07 Mine was born at 30+0, but when he hit 34+0 we also had a great day, got off oxygen the day before, took his IV out, and had 3 breastfeed attempts... I was so happy I even went on Amazon and ordered some diapers and wipes cause it seemed like we were on such a good path and we would eventually be home.
Then at his 6pm assessment his belly was huge and tender and we had to do a huge NEC workup, NPO, place a new line... just now 2 weeks later starting tiny NG feeds. It's the world's worst roller coaster, and there's no getting off. Fingers crossed he turns around fast for you. The people here understand your pain.
@i_amtemitope Gosh that is so hard I’m so sorry. The rollercoaster of emotions is so hard. These little guys can take a turn so fast. I hope the best for your LO. Hopefully home soon.
@i_amtemitope My little guy was the same way except he has 2 Brady events which is what clued them in that there was an issue. They were looking for an infection of a different story and did a chest X-ray when they saw his colon was swollen. The bowel rest after feeding them is so tough because they're angry and hungry. Chin up though, it took awhile to come off the NG tube with slowly increasing his feeds but after what felt like forever he finally came off of it
@west07 I’m so sorry. I actually also recently had my son, same thing born at 34+4 due to preeclampsia. We were SOOOO close to discharge this week when he failed his open crib trial for the third time and we had to start over with 24 hours closed and a 72 hour trial after in open crib. I bawled my eyes out to the unit secretary who gave me a cookie and tissues. It’s so hard when your hopes are up and they come crashing down. I really hope your little guy needs the boost in oxygen for a short time and that he can be coming home soon
@west07 Honestly we had the same experience and our little was born 34 + 4, was doing so well and then caught parainfluenza and is now on high flow support to help her through it. She was having extreme desats and Brady’s and I just couldn’t stop crying because she was doing so good before we were talking about taking her home. After a rough 24 hours she’s doing much better and we just have to ride it out. What I can tell you is you are not alone in what you are experiencing and there will be ups and downs like a roller coaster. My other daughter was a 32 wheeker and one day she just got everything down and took a leap in her development. Eventually everything will just click for them and you will be home with your little one and all snuggled up. Just have faith
the day he comes home is going to be the best one.