My twin boys have been in the NICU for 16 weeks now. Born at 25 weeks and 4 days. They have both been doing fairly well although both have chronic lung disease. My son Benjamin is worse off than Alex. Ben has pulmonary hypertension and was just started on Viagra last week and was also started on reflux medication to try and help his stridor. He was down to high flow 3 about 10 days ago, but he was given a dose of dexamethasone to help ween him down to that. He was off of the dex for about 4 days and then started to back track and ended up back on CPAP 8. The doctor wanted to have a meeting with my fiance and I to discuss what "options" we have and what their plan is to try and ween him back to high flow again. They decided another course of dexamethasone would be best for now and see what it does. They said if they are not able to ween him back to high flow and he doesn't tolerate it then there is the possiblity of him needing to have a trach tube to go home. This absolutely terrified me and I basically told them that that's not an option for me and they need to figure something out to get him home without a trach. So far he is on day 6 of steroid and doing okay. They weened his CPAP to 6, and they are now alternating CPAP and High Flow every 12 hours, just to get him used to the high flow again. He still mildy retracts and gets himself worked up with his care and while trying to bottle feed, but once he calms himself down he seems to be okay. I am just so nervous for when they have him on high flow all the time that he may not tolerate it. During the meeting I asked the doctor if she thinks he will honestly need a trach to go home, and she said more likely than not. I have heard stories of other NICU parents being "threatened" with the trach situation, and then it never happens. I guess I was expecting to see a bigger result this far into the steroid. He still has 7 days left so I am hoping and praying that it really does help. Any other familes have this happen to them? Any advice? 

2 Replies

  • Hey and welcome to Share! Congrats on the birth of your sweet boys! My best advice would be to live one day at a time and take things as they come. They may have suggested a trach at this point so that if it does come up again it won't be as much of a surprise, as much of a blow. It sounds like they're trying to exhaust all options before coming to that. Just take it one day at a time and hopefully it won't come to that. But if it does everything will be ok. They'll train you and make sure you are 100% comfortable with caring for him with it and know what you're doing before sending him home. Hang in there Mama, you got this!

  • Hello and Welcome. I'm sorry I don't have experience with this particular issue but I do want to offer my support to you and your baby boys. I can imagine this is very frightening and everyday is another battle. Please know we are here for you.
    Love and Hugs