I’m not even sure where to begin.
It’s hard, living in a hospital. Really hard. There have been days when I’m not sure why we’re here, nights when I’m texting the Dork Lord, at the end of my wits, begging him to please let me come home, moments when I’m dripping in Charlie’s vomit, being condescended to by some misguided nurse and wondering, if I punch her, will I go to jail or end up on the news?
It’s also oddly social, living in a hospital. The other parents and caretakers, because they’re the only people in your world who know what it’s like, what it’s really like, become such an important part of survival. And Charlie is a wonderful ice breaker. With those cheeks and drooly smile, he’s got friends all over this place. And in this place, you learn to read people quickly. Some, I try never to get stuck in the elevator with. And I’ve handed Charlie off to a woman I’d only just met so I could shower off the stomach full of formula he heaved on me. When I came back for him, he wasn’t so sure he was ready to go.
Charlie’s progress is spotty. One day he has me convinced we’re going to get this and the next, he’s taken a giant leap backwards. But I’m told that’s how it goes. With only 10 days left, though, I’m desperate to see more progress than backward leaps.
I’m so grateful for all the emails and comments and donations – I can’t tell you how much. There just aren’t enough words.
Good luck, good luck, good luck! We are all thinking of you and pulling for you!! Such a beautiful little baby…loved the photos and videos on Flickr. You WILL get this, you WILL.
Living in a hospital sucks major ass.
But it’s better than being apart from your loved one.
Last year I spent a month and a half with my husband (most of the time in a neurological ICU room) He is fully recovered. Every once in a while I feel the urge to share that with someone, so that someone else can know that life can turn into a hail storm of horror and then it can get better.
Anyways, probably useless of me to share that I know living in a hospital sucks. Cause you very well know that.
The cots about killed my back, food was spotty, bathrooms had to be accessed through a fricking door that locked and you need buzzed back in by nurses. Nothing like literally being locked out every time you need to pee.
But the people, going through their own little versions of horror on the same floor as us, they showed me such glimpses of pure human kindness that I could keep going.
All that said, I hope your Charlie does better and better and that what kept me going was that every itsy bitsy positive thing was a step and even if there was no new positive thing as long as something else didn’t go wrong, that in itself was positive.
Also, why hospitals don’t have yelling rooms I DO NOT KNOW.
But I can attest that getting outside in a car and just scream and scream and scream helps keep you from cracking when you’re inside.
It’s okay to crack a bit and let it out.
Because all that you’re going through is unfair.
But positive stuffs can and does happen.
Anyways, good thoughts to you and the Dork Lord and your Charlie.
Beautiful. Glad your husband is doing better, Tracey.
I wish there were a magic wand I could wave and make this whole situation better for you, the Dork Lord and especially Charlie. While my thoughts and prayers and all good juju seem to pale in comparison to said magic wand, know they are there 24/7.
Heather, we are all rooting for you and Charlie. I hope the bumpy road is leading to a fabulous outcome, and soon!
Wishing that (1) you weren’t in this situation in the first place, (2) that this therapy works and you can go home with a baby that eats at least somewhat normally, and (3) that I could do more to help.
I am glad you have some hospital “friends”–there are some truly wonderful people who work in hospitals. Hoping that the magic happens these next 10 days!
(Also, if you punched that nurse, you would definitely go to jail. Doubtful you would end up on the news unless you punched her on an elevator with a video camera. Perhaps you could accidentally kick a shin lightly as you “trip” over something.)
Longtime reader, almost never commenter — just wanted to say that I’m sending many hugs to you through this, and hoping that you come out the other end … soon! xo from Bklyn
I was only in the hospital for four days with a “failure to thrive” baby. The pediatrician was blaming my breast milk, but the baby had a UTI and kidney reflux. Anyway, it broke me. Only four days but it did. And now, I mostly hate doctors and especially nurses. Maybe not fair, but there it is.
Re-introduced to your blog today and so happy to hear that you are now a Momma to Charlie, but so sad to read of his (and your) struggles.
I don’t want to presume anything, and haven’t read all previous comments, but feel I should offer the following link in case it proves to be helpful. You may have already looked into 22q Deletion syndrome but if you haven’t, a simple blood test can rule it out.
http://www.dempsterfamilyfoundation.org/what-22q/22q-overview
Best of luck to you and your family!
Thank you for posting an update. So glad to hear you guys are still hanging in there. I wake up every morning sending good vibes from Boston over to you both. It is no help now, but eventually this will all be a distant memory. In the meantime, you’re surviving like a boss. Seriously, I’m completely in awe of your strength. And for the times you don’t feel so strong, know that your virtual cheering squad is in this with you for as long as it takes.
Thinking of you. We had a baby this year too and spent some time in the hospital due to feeding issues as well. Your dedication as a mama is so clear, and I too am in awe of your strength. We are rooting for you both from here, and sending every possible positive thought. Hoping rehab brings Charlie the treatment for his needs, and you the chance to finally have the luxury to enjoy motherhood without worry.
I’m sending lots of positive thoughts and big hug your way. I’m so sorry you’re having to go through this.
Sigh, oh boy! It’s been a while since I’ve checked in and I’m sorry to learn of these struggles, kiddo.
Stay positive. Just keep loving that little boy as This Too Shall Pass.
You’re all in my daily thoughts and prayers.
xoxox
Curious how you all are doing — I think Charlie’s in-patient stay must have ended by now? I feel so strange to be rooting so intensely for a complete stranger, but I think of your family often.