Who me, I'm not doing anything look-notice the nasal canula is only half in!
Success the canula is out!
Darn it, Mommy put that silly thing back in my nose!
Another issue today (just about everyday, really) was the fact that Jaime can't poop. Poor guy is in so much pain, he actually spent about 30 minutes just whimpering tonight. He's been pushing and grunting all day with absolutely NO success. I plan on calling someone tomorrow...I'm not sure if I will call Dr. Hellerstein or Dr. Haberman, but I'll be calling someone for sure! Tom and I feel if Jaime's fascia was closed, he'd have less issues. Currently, Jaime's anatomy is in such a way where his bowels are sitting to the right right side of his body where his fascia is still open. We'd like to get him back to Cincy to get that closed as soon as possible! (Just curious...any other CDH'ers have this issue?)
Jaime didn't nap at all today, either (probably because of his abdominal pain). It was quite a long day with Jared and Jaime all by myself, as Tom spent the day (from 9 until 4:30) getting his schools ready for the upcoming school year. I managed to set up the sprinkler for Jared, he played outside for a few hours...I was running in and out to check on him. Colleen and the kids stopped over and I brought Jaime out for a little bit, too. It was really hot, then we had a storm, so that took care of sprinkler time.
That's about all to report...Jaime's fussing again. I'm going to bathe him and try to get him to bed!
Good night!
When we brought Emily home on oxygen we also had a difficult time keeping the canula in her nose. The tapes used in the RCNIC weren't available to us; we tried tender grips, but she'd pull them off and we never had a big enough supply. Not using any adhesive wouldn't have worked either. Luckily after about 3 months we got the official OK from Dr C to discontinue the O2. Oh happy day!!
ReplyDeleteI know you've read about Emily's pooping trouble. After starting her on MiraLAX she's had better days...at least until recently. It's been 4 1/2 days since her last dirty diaper. We'd given her more and more of the MiraLAX, but no dirty diapers so far :( Maybe this is something Jaime could try (with the doc's OK of course).
I can't comment on the fascia issue since we didn't have the same issue. I hope you get some answers tomorrow.
Oh, what a happy baby! He is so cute. Good luck getting the bowels to work. Natalie had issues and there was nothing wrong with her.
ReplyDeleteTake care.
We use pear juice or Miralax and they work like a charm! Can you use Tegaderm strips to keep the cannula on? That's what we use for Carter's NG tube and he's had no issues with his face breaking out from it.
ReplyDeleteI have a RCDHer as well. I always follow your story closly because my baby was born at 33 weeks so I find a lot of similarities. Also, Dakota's intestines are on the right side. Our surgeon explained that they could not put them back inside the colon, so they would always be in the wrong place, but that it most likely would not cause a problem. We just have to be on the lookout for malrotation, which we will know if it happened (the baby basically throws up fecal matter-YUCK!). Anyways, Dakota drinks pumped breast milk, and after two months, she started to only poop once a week. I got very concerned because she seemed like she really wanted to go more and often grunted and strained and fussed. But everyone I talked to-the surgeon, the nurses, our pediatrician-all said it was fine because a baby's body can absorb breast milk and I should only worry if it was more than a week or her poop was dry and hard. I don't know what Jaime drinks, but if its breast milk, it may not be an issue. Dakota is now 7 months so we started her on solids and she poops much more regularly now. LOL-what a conversation! I guess motherhood and conversations about poop go together!!!
ReplyDeleteJust an observer but many CDH babies have issues with moving their bowls so I wouldn't say it wasn't unusual for them. You got some good advise pear juice or asking for something that might help - I know that many Moms (and I do too) loved Carnation Formulas - it seems to help with that and reflux too.
ReplyDeleteI hope your little monkey feels better - and he is so darn cute!