Feeding is one of the BIGGEST challenges when it comes to having CDH. Tom and I have been SOOOOO fortunate to not have initial feeding issues with Jaime. Today, sadly enough, it looks like Jaime got the memo that CDH'ers are supposed to have some feeding issues. UGH!
His first bottle was offered at noon...20mls. He sucked it down and got ticked that he didn't get more.
We told the NP this, she talked to Dr. Tiao, he said offer him 60mls for the next few feeds. 3:00 P.M. came...he drank about half of his bottle and all of the sudden started screaming, shrieking really...so not like Jaime. Clearly he was experiencing some sort of discomfort. A little bit later, he pooped his pants. It took him a while to finish that bottle, but he did. 6:00 P.M. feeding came...not even halfway through the shrieking started and then an even bigger dirty diaper. He never did finish that bottle. Then at 9:00 P.M., he was still fussing from his 6:00 P.M. bottle, that he refused his bottle. Kim, Jaime's primary nurse (Welcome back from Egypt, we missed you!) tried to feed him, but he was choking and gagging on it. A little while later, he threw up. By 10:00 P.M., he decided that he wanted his bottle, so I let him try it again. He played with it for a while, then he choked, gagged and threw up...this time all over him, me and the floor! Blahhhhh! Kim talked to the Fellow, we decided to stop all feeds tonight. At 11:00 P.M. Dr. Lim rolled in. (Nothing like having one of the top CDH surgeons come in late at night for your little one.) He said he received a call about Jaime and wanted to personally check him. (Seriously, can we even have nicer drs. on him?:) Well, by this time, Jaime was so tired, he was calm...never mind the 4+ hours of fussing, screaming and crying prior to this. I was teasing Dr. Lim about that, he said he looked fine! HA! Then, when I asked if this was "normal" he said, no, but it's not unheard of. He said it's not something they like to see after a major abdominal surgery and we need to get to the bottom of things. Tomorrow they will be putting a feeding tube in to see if Jaime can tolerate formula, period. From there they will decide what to do.
So, that was our day of feeding...poor kid wanted to eat soooo bad and then all of this happened...by tonight, he didn't even want the bottle. I'm just hoping it was too soon or something and that we don't end up having major feeding issues.
I can't end this blog a bad note, so I'll share some awesome photos with you along with some good news. Jaime's day started out pretty great! Overnight he was weaned to 2 liters O2 nasal cannula with a CO2 level in the mid 30's. YEA!!!!! By tonight he was weaned to 3/4 of a liter. Dr. Lim mentioned that since we're at the hospital, they are going to try and wean him off of the O2 all together! Wouldn't that be GREAT?!? Also, he had PT and OT early this morning. I wasn't there for the PT session, but I was there for the OT session, Jaime started off REALLY slow, but eventually gave in and started doing things for Liz. He even cracked a few smiles! :)
After OT, he played in his crib for a while. So, in short the day started great, but ended crummy! :( Such is the life in CDH World!
Wishing everyone a good night from a chilly Cincinnati...Brrrr....guess it IS November in Ohio after all.
P.S. I talked to Grandma tonight, sounds like she is holding her own, all things considered, lots of typical hospital poking and prodding.
Jamie's pictures look great! I hope the feeding issues are just temporary. Jamie is probably just still sore from the intubation. Hopefully, in a couple of days he will be taking the bottle like before. My Carter is so sporatic on feeding. Sometimes he will take up to almost 5 ounces at a time than other times less than 2 :(
ReplyDeleteHow funny that you get two Carter comments first. :) I am so sorry to read that Jaime is having some trouble with feeds. I will pray really hard that it doesn't last because you all have been through so much, and I would never wish feeding problems on anyone. Please make sure they check for thrush, deep in the throat. Carter would get it from the antibiotics and it was really hard to get rid of it. That's what caused his initial refusal that spiraled out of control when we didn't know the thrush was so deep.
ReplyDeleteI'm very sorry feeding didn't go so well. The choking thing K use to do very often- Zantac has helped that some. So maybe his reflux is just on the fritz.. but again I'm no dr. :) I hope things will get easier- I'm so glad they weaned the O2 again and are looking to take it off completely. :)
ReplyDeleteps- it's cold here too- K is watching out the window her first snow fall :(
I too hope that Jaime's feeding trouble is temporary due to another issue, like readjusting after surgery. He's doing awesome with the O2 wean!!! As for Dr Lim, I always thought the he LIVED at the hospital! He would always be so quiet and reserved, I wasn't sure how to read him. Then one day one of the nurses mentioned that he'd come around to check on "his princess", Emily, I was a bit surprised. Didn't think he got emotionally involved. I think he just hides it. I'm sure Jaime has a special place in his heart as well.
ReplyDeleteI'll be checking FB for updates on feeding through the NG!
btw, missing those FB chats! Hope you are feeling better today!
My gosh, Jaime is just too adorable. Love to see his cracking up smiley face...too precious. Hope his feeding will improve very soon.
ReplyDelete