Raising Awareness for Apert Syndrome
Well, today, our little lamb was supposed to be 37 weeks gestation! He had his first MRI, and we got some good news(update later)! Thank God! We even had our favorite nurse to go along on the adventure! He has reached 5lb10oz and is doing well on his oxygen weaning! Tomorrow we have our telegenics consult, so we’re looking forward to some more answers! Thanks to each of you for your continued prayers! ❤️
Dawson is closer to graduating to a crib! This means he is finally able to hold his own body heat while being swaddled! He has slowed down on his puking and is gaining weight well! Only a few apnea’s the past several days, which is a huge relief! We love spending time with him and do as many hours a day as possible! He smiles when daddy makes silly noises!😂 Skin to skin is the best thing for him right now! So we’re doing it as much as possible! ❤️ So very thankful for aunt Debbie this week, she’s keeping Coley and helping us with any other needs!
*vent* I’ve had quite a few people tell me I know it’s hard but hopefully it’s only a couple week/months then you can bring him home and yall will be together! “He will be fine”! But in reality. You don’t truly know that. So just please stop.
Ummm, and really, fine?!?!? I don’t want to leave him 1 day even. It doesn’t feel so great when one comes to a mom with a newborn, who was just pulled out of you 6 weeks early and says, “hey I’m going to take your baby away for 2 months, to be taken care of by “qualified” strangers that you have never met, or/much less chosen and they are going to switch off continuesly with other people you have never met!! ... but don’t worry they are qualified, they do this all the time and after all it’s only a short time!
Oh and some are nice and sweet while others handle your baby so roughly, where you have to step in and say, I’ll take it from here. It leaves you in tears. The whole process in general really does. Not all nurses enjoy parents being around and make you feel like you’re the one that doesn’t belong in the room, when it’s actually the other way around. (we do happen to be very blessed with a handful of absolutely amazing, favorite nurses!)
They will take care of your child’s health, but if your baby is crying he will just have to lay there crying, cause physically he is fine. There are multiple nurses that do have good bedside manner and come in to pat and sometimes hold them when they’re crying, but that’s only if their other 2 babies don’t need them at bedside for something “more pressing” than a cry. As if a child’s cry isn’t enough. (So much thanks to the few who love to hold when needed and will play him music!)
He will get diaper rashes, and even bleed, because they only change diapers every 3 hours, so they get to sit in their own pool till it sticks to their bum. Because god forbid we do too much stimulation between the designated hours and check them more often. Not to mention the continuous throwing up that they lay in and the nurses don’t notice unless the oxygen monitor goes off. (This is why momma needs to stay close)
“But it’s only a little while and you will have the rest of your time together, where you can be mom.”
It is not just a few months apart. This is my time! I’m supposed to be with my baby and none of this is okay! Walking away at the end of the day isn’t easy, it’s hard as heck. Knowing good and well my baby needs me as much as I need him. He’s supposed to be home with me.
Sorry, this last week and a half is really hitting me hard. Dawson is mostly stable. Hes taking his milk through the tube great! Gaining weight! They are lowering his oxygen daily. He’s far exceeding expectations!
But, we have two other kids at home, so staying at the hospital isn’t feasible. But we are there most of every day. We are literally taking it all day by day. Waiting on results. Watching him improve. But it isn’t enough to come home just yet.
I am blessed with an amazing partner who has been everything and more on this whole journey the past 7 months! I’m so grateful for him! Please keep us in your prayers! And thanks to each of you who have stopped your life to come help, dropped by, brought food, been helping with the kids and house, calling and texting with encouragement, praying and giving! It means the world! We so appreciate it and you won’t be forgotten! ❤️
