Any advise for a mom with newborn with CF and perforated bowel emergency surgery?

[Aboveallislove]

Family friends little one just had a baby who had an emergency surgery for a perforated bowel and diagnosed with CF. I know all the general info for new moms, but wondered if those whose little ones had MI at birth, if you had any specific suggestions/recommendations etc. from lessons learned? Also, I don't know if the perforated bowel is the same as MI or is it a more extreme complication? Do they usually lose some bowel/have short bowel disease too?

 

[Ratatosk]

Ds has surgery at 24 hours due to mi. What they said would be a 2 hour surgery took over 5 hours. He had twisting, mal rotation, volvus, some necrotized tissue and perforation occurred during surgery. That said, he was stooling within a few days, able to take pedialyte in a bottle after a few days. If it wasn't for a couple infections, he'd have been discharged from the nicu by the end of the week. During our time in the nicu we got hands on experience several times a day from rts on how to do cpt, learned about enzymes, meds, so we at least we're well prepared for that when we went home. No issues with short bowel, the amount of tissue removed was nominal

 

[Aboveallislove]

Thanks so much! Do you have any pointers for the first few weeks at home that were unique because of the surgery? I think you're the one (sorry....mommy cf brain) that also had the scaring issue and the no nuts? Any thing like that to keep in mind?? Thank you so much! I'm trying to pull all the helpful info to be able to share when the time is right.

 

[Rebjane]

My daughter had abdominal surgery at 5 days old due to a meconium ileum. She was not perforated. She had a small amount of her bowel resected put back together. It is very stressful.

I think asking questions, writing them down(especially because of stress and sleep deprivation) is important.

Even holding you newborn is hard after belly surgery; I remember all the wires, tubes, incision in the belly IV in the head PICC line in the thigh, foley catheter....I could go on.

Take it one day at a time. I breastfed my daughter(pumped for 2 weeks straight til she could nurse). I could provide more info about that if nursing is desired.

It's so individual...hope the little one and family are ok

 

[Ratatosk]

For us, the first few weeks it wasn't the surgery issue, but getting into a routine. DS had lost weight and we were instructed to feed him every 3-4 hours. He also had some bottle aversion issues and it was a struggle to feed him. I was terrified he'd end up losing more weight and end up back in the hospital or with a feeding tube. Sleep feeding was actually less stressful because he didn't struggle with us and I was probably much calmer. And because he came home with a cough to do CPT 4 times a day with nebs. DH went back to work, so I was pretty much on my own, although he did the middle of the night feeding.

DS had issues spitting up, still had frequent diaper changes. We suspect because his surgery was so complex to begin with, his issue with an obstruction caused by adhesions at age 5 were the result of that. Because since then he's had pretty much normal stools, no vomiting or constipation issues unless of course he OD's on peanuts, which is why he's limited to two small portions for a snack each day.

That said, looking back at photos and videos of him, he was a very happy active baby/child as long as we weren't trying to feed him.

As for holding him with all the wires -- we insisted he be allowed to wear clothes, so sleepers with snaps in the front to fit his broviac (central line/iv) in his chest. And we held him as much as possible. We also started CPT immediately to keep his lungs clear and to get in the habit.

 

[Gammaw]

Been there. Our son is now 9, pancreatic insufficient so he takes enzymes, but has no related issues. He's 75% BMI and looks a bit chubbier than most of his non CF friends! Despite being born with a perforated bowel and was in NICU for almost 2 months. The doc said it was like sewing together two pieces of spaghetti. We had some trouble getting the weight on at first, but we used lots of supplements and techniques. We kept a bottle in his hand and fed him whenever we held him but never forced. While in NICU, we brought a CD player and lots of great music - classical and lullabies - to keep him soothed and yet stimulated when he couldn't be held. He loves music to this day. As he started more solid food (besides applesauce, which he now hates!) we would keep him loaded with good old Ovaltine or Boost (the prescribed supplements were too calorie intense for him. He would wind up in huge stomach pain and huge bowel movements despite enzymes as prescribed). So we just kept feeding him. Tons of snacks.

In answer to one of your original questions, a meconium ileus is when the intestine is blocked by the initial bowel movement. A ruptured bowel is when the intestine ruptures from this blockage. It's more difficult because infection comes with a ruptured bowel. 10% of all CFers are born with MI. It's indicative of CF.
Feel free to chime in anywhere for more info from this incredible community. Or private message any of us including me anytime. Our purpose is to help!

 

[Gammaw]

Sorry AboveAll! I didn't realize you posted the initial thread! I can't fit names with the text on the screen when I read this forum on my phone! I suspect they are shell shocked right now, as we all were initially. But I do remember intense hunger for information. So feel free to welcome them "home" here where they can get lots of info and support. This was my second major stop after reading all I could find on the Foundation website. If they are more comfortable, they are welcome to PM me and I will be happy to share our experience.

 

[Aboveallislove]

Thanks all. And Gammaw, I actually asked on another thread for advise re Riley where they are. Practical stuff, like scheduling appointments a year out, or parking or good places ot eat nearby, etc. Any practical stuff?

 

[Gammaw]

I will be happy to answer Riley questions. Let me go find your other thread!