Rough start

[Louisa]

Here is my story. I delivered my precious daughter by emergency c-section at 31 weeks because of severe preeclampsia (hellp syndrome). She weighted 2.5 pounds. Unfortunately, she did not pass meconium (meconium ileus) and had her first op at 8 days and a second at 10 to place a temporary ileostomy. We were supposed to bring her home after recovery and come back for the stoma reversal, but she can't gain weight (high output/dumping). They deceided to early close it on the beginning of january. Her little lungs are far from perfect for now, since shes a preemie and I didnt had time to receive both of steroid shots, but I guess it will get better even though she has CF. She was genetic tested and they found out df508 and a pretty rare one: c.1116 G>T. I can't find any infos on that one and that makes me pretty angry. She's on Pulmozyme once a day already and I'm learning CPT. They also mix enzymes in her formula, which she receive by feeding tube continuously. I'm not sure why I'm posting here honestly. All of this is so scary and I am so discouraged after 100 days of nicu so maybe I need some info and hope..I dont know..I'm sure someone will find some things to make me feel better. Thanks for reading anyway!

 

[jaimers]

Congrats on the birth of your daughter! I'm so sorry you're going through this rough start though. A CF diagnosis is a lot to deal with but even more so on top of your daughter being a preemie! I don't have any specific info to help you other than to say it's really important for your daughter to be seen at an accredited CF center for her regular cf care once she's stable and home from the nicu. There are some pretty significant advances being made in the world of CF meds and treatments currently and so the future is much more bright for us than it used to be!
This is an excellent place to find support and encouragement as you embark on this journey. Never be afraid to post any questions. we're here for ya!

 

[Rebjane]

Welcome. That does sound like alot to deal with. Is your daughter still in the NICU? Does she have a CF specialist at a CF center? I always suggest to ask questions and write them down. It's probably so hard to absorb everything. Having a support person like significant other and or family and close friend is important too. Make sure you take care of yourself so you'll be ready to take care of that beautiful little baby girl.

My daughter with CF is 14 years old. She too had a rough start. She was not a preemie however, so I don't have experience with that. She did have surgery at 5 days old for a meconium ileus and another surgery at 5 months old for a bowel obstruction and lysis of adhesions.

It sound like the challenge with your daughter is getting her to gain weight? Hopefully someone with a baby who had these issues will pipe in. My daughter had trouble gaining weight as well(but she was full term/breastfed) So I am not sure about formula. I assume they are using formula that is completely broken down for the baby to absorb and also high calorie?

I have found my daughter to be very resilient. I thought geez, We are never getting through this it felt like a black hole and something turned around. I have found that parents of children with CF are their greatest advocates. You will be stronger than you ever thought possible.

Please ask any questions. Sometimes CF can be trial and error til something works.

Praying for you and your baby.

 

[Louisa]

Thanks to both of you.

She sure will be seen by an accredited CF clinics. I'm from Quebec, Canada. For now, we are in the best hospital and I already met pulmologists, nutritionist, social worker, gastroentherologist (im french, not sure about this one). I started to learn CPT with the physio and will meet nurses after holidays. They wanted to wait the official diagnosis (pretty dumb since I was there anyway and I made peace with the diagnosis a while ago. It took 6 weeks to know for the df508 and an other 6 for the rare one). That wont be my CF clinic forever since Im 6 hour from home and have one at 1 hour from home for when she will leave NICU.

Yes, she still in NICU waiting for the ileostomy closure. Her challenge are digestive AND lungs. Now, that seems more related to the fact that she's a preemie for the lungs, but she surely produce thicker mucus than usual (thts my guess as its my first baby). Prematurity also make a big difference for the digestive issue. High output stoma are frequent, complicated to manage, and closure often make a big difference as the bottom portion of the intestine can begin to help once reconnected. She's on formula since she can't absorb anything else they needed to put her on something easy to digest. They tried Pregestimil, Puramino and are now on Neocate that seem to work better (both previous were layering with the enzyme).

Anyway, all the challenge of prematurity make me think her CF symptoms are so severe already that I need to talk to myself and also go read forum about preemies to figure put other parent experience the same...I guess prematurity problems will resolve while I take care of her CF, but for now, that is pretty discouraging!

Thanks again to u 2 and hope you and your families are fine!

 

[MissAlexsBP]

Hi @Louisa!

Welcome and congratulations on your baby girl!

I have CF, so I do not know what it is like to raise a child with CF, but I do know what it is like to have it! I too had meconium ileus at birth and a bowel resection at 4 days. I was sent home with a G-tube to gain weight. I was not a preemie, but it sounds like you and your family are already taking many steps in the right direction to reach out the right people and become educated on Cystic Fibrosis.

If you ever need to reach out, please do not hesitate! I could also get you my mum's information if you'd like to speak with a parent of someone with CF for their perspective as well!

Sending positive thoughts!

Alex

 

[Louisa]

Thanks Alex! Very appreciate to hear from your story. For sure it would be great to talk to a mom eventually!