Hi guys! Our son Maverick was born June 5th 2020 and he has been in the ICU at children’s hospital Dallas every since. He was born with Pierre Robin sequence. Pierre Robin sequence babies are born with a jaw that is recessed and pushed back. It also includes the tongue which is pushed back and causes problems breathing and feeding. The last issue it comes with is a cleft palate. A cleft palates is a hole in the roof of the mouth where it never grew properly.
He has had trouble breathing and feeding with his condition and has a surgery to to a G-Tube in for feeds. He will need a jaw dissension surgery in a few months, as well as a cleft palate surgery in about 10 months. He is going to have another surgery pretty soon to fix his hernias that he has in his groin area that could lead to feces comping down into his groin.
Our biggest concern right now is hotel cost and food cost since we’ve been here for almost a month it all has added up quickly. Due to Covid the Ronald McDonald house, which gives free housing and meals, is not accepting any parents right now in Dallas. We were hoping to get in because it would have saved us a ton of money on hotels and eating out.
We found a hotel pretty close by that was cheap but the room was covered in smoke smell and it was a very bad experience to stay there. We’ve been staying at a hotel since that is 5 min away from the hospital and is a little more experience but worth it for safety reasons. Needless to say, even a decent room rate (we pay about $75 ish a nigh) can add up quickly when you stay for a month.
We’ve been able to pay July’s rent but not sure about what is in store for next month and if we’ll have the funds for august. Anything helps us in this time of need. It’s a tough situation regardless, but due to Covid, it’s made it even worse for NICU parents.
We haven’t been able to have both me and mom in the same room as him as rules only allow one parent at a time. I have been off work during this time as well. I am getting sick pay and some vacation time but not near as much as what I was getting when I was actually working.