July 2013 Moms
gutsymama
member
NICU Log: Day 101 (A Lucas Update)
gutsymama
member
I made the mistake of counting - Lucas is 101 days old now.
CN: Luke doesn't feel good, which sucks, but they don't think it's anything to really worry about. Surgery on Tuesday, 9/3.
Long Version: I was going to post a cute 100th day update yesterday, but instead I spent the day with him sleeping on me because he didn't feel good, and then he puked and it came out both nostrils and scared the sh*t out of both of us. He'd had another contrast study the day before, and the think he may be reacting to that a bit, so after a couple more puke sessions overnight he's on antibiotics and we hope he'll be feeling better soon.
5 contrast studies have shown his intestines are only healing very very slowly, and there is still a small leak and/or blockage that they'll have to fix when they go back in. His doctor says he should be able to fix it and still reconnect; if he comes back still with an ostomy again I think all three of us are just going to quit and go home. I'm not sure I could take it.
After he heals from surgery, we'll see what he can tolerate in terms of eating, and once that's figured out we can go home, even if he still needs an IV. His intestines will probably take quite a while to function properly. He may have a G-tube; they're putting one in just in case so they don't have to send him back to the OR for it later. He will also have a new kind of IV line thats meant to be more long-term (again just in case, but it's pretty likely he'll need it). We don't have any timeline for how long it will take to figure out the feedings though, so we're looking at a range of 2 weeks to ???? after surgery before we're home.
I'm dreading post-op recovery again. It feels like we just keep starting over. It also seems kind of daunting that we may have to learn to take care of him all over again; the ostomy and current IV have been hard, but they're old hat at this point. I want really badly to be able to nurse, but we've never even tried, and the thought of just starting over on things like we have a newborn again at this point is exhausting.
Well, I can only bump while I pump today, so I'm going to get back to my baby. Thanks for the T&P!
CN: Luke doesn't feel good, which sucks, but they don't think it's anything to really worry about. Surgery on Tuesday, 9/3.
Long Version: I was going to post a cute 100th day update yesterday, but instead I spent the day with him sleeping on me because he didn't feel good, and then he puked and it came out both nostrils and scared the sh*t out of both of us. He'd had another contrast study the day before, and the think he may be reacting to that a bit, so after a couple more puke sessions overnight he's on antibiotics and we hope he'll be feeling better soon.
5 contrast studies have shown his intestines are only healing very very slowly, and there is still a small leak and/or blockage that they'll have to fix when they go back in. His doctor says he should be able to fix it and still reconnect; if he comes back still with an ostomy again I think all three of us are just going to quit and go home. I'm not sure I could take it.
After he heals from surgery, we'll see what he can tolerate in terms of eating, and once that's figured out we can go home, even if he still needs an IV. His intestines will probably take quite a while to function properly. He may have a G-tube; they're putting one in just in case so they don't have to send him back to the OR for it later. He will also have a new kind of IV line thats meant to be more long-term (again just in case, but it's pretty likely he'll need it). We don't have any timeline for how long it will take to figure out the feedings though, so we're looking at a range of 2 weeks to ???? after surgery before we're home.
I'm dreading post-op recovery again. It feels like we just keep starting over. It also seems kind of daunting that we may have to learn to take care of him all over again; the ostomy and current IV have been hard, but they're old hat at this point. I want really badly to be able to nurse, but we've never even tried, and the thought of just starting over on things like we have a newborn again at this point is exhausting.
Well, I can only bump while I pump today, so I'm going to get back to my baby. Thanks for the T&P!
FKA mimi4347: diaper rash magician and unofficial expert on excrement
This kid may not have a lot of bowel, but he has plenty of guts!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
This discussion has been closed.
Re: NICU Log: Day 101 (A Lucas Update)
L: 7/12/13
C: 5/11/15
E: 3/7/17
Due 11/10/18
*On 4.28.11 we said goodbye to our angel baby (D&E at 18.5 weeks)*
The three of you are in my thoughts and prayers daily. Best wishes for Lucas' surgery! I hope everything goes well
In regards to the puking out his nostrils- Phillip has acid reflux and pukes out his nostrils at least once a week. His pediatrician said it's no big deal, just to make sure we use the bulb syringe to clear out his nostrils. It's still scary as crap, but it's easier knowing that it's not a cause for concern. (hugs)
TTC since 6/2003. m/c 9/14/03 8 weeks, 5 chemical pregnancies, mmc 6/04 12 weeks, Michael born sleeping 5/25/05 at 22weeks always our angel, fought ovarian cancer and won, m/c 4/06 5.2 weeks and 7/07 6.6 weeks,Our Miracle baby girl born 4/8/10,mc 12/18/11 at 5.3 weeks, BFP 10/26/12 dating u/s on 11/8/12 showing a strong heartbeat!EDD July 4,2013. RCS on 6/27. Baby boy in NICU for 8 long and scary days before he was able to come home. We are now a happy family of 4
.
Married: 4/5/13
"You know that place between sleep and awake,
that place where you can still remember dreaming?
That's where I will always love you.
That's where I'll be waiting."
~Peter Pan
*TW*
BFP #2: 10/29/17 MMC dx @ 9 weeks
BFP #3: 2/2/18 MC 2/7/18
BFP #4: 3/2/18 MC 3/9/18
RPL testing and hysteroscopy: all normal
BFP #5: 4/1/18 MMC dx @ 14 weeks ----> genetically normal girl
Hysteroscopy to remove scar tissue 9/28
BFP #6 11/5/18 EDD 7/20/19
BFP #7 12/8/2021 EDD 8/22/2022
I lost my angels 07/2010, 04/2017, 10/2017
Meimsx no more
Baby boy 7.10.13
FX for a successful surgery and speedy recovery this week.