new baby with cystic fibrosis

[ashton2005]

Hello we found out about 1 month ago our unborn baby has cf. just wanted to get some insight on families that have had to bring home a new baby with cf. We are also looking at the possibility of ashton having to have bowel surgery after he is born anyone with some insight on this either

thanks
christi ashtons mom

 

[rose4cale]

Welcome Christi. I don't have a lot of knowledge on bringing home a newborn with CF or the bowel surgery. Sorry. I know others will give you great advice and first hand knowledge. My son was 18 mos when he was diagnosed, but he is such a wonderful child living a pretty normal life. All boy!!

When is Ashton due?

 

[anonymous]

Ashton is supposed to be born around thanksgiving but they are talking about doing a csection around the 1st week of november instead due to his size and bowel obstruction. I go for an u/s on oct 19 and they will determine then when they want to deliver. How did your son get diagnosed at 18 months did he have symptoms of were you aware you were carriers?

 

[rose4cale]

Cale was having around 12 bowels a day and had failure to thrive. He ate non stop and his food was going through him just as fast as I could get it in him. The diapers were so abnormal, loose, bulky and foul smelling. I hounded our regular Dr for 12 months. At Cale's one year checkup you could see the light bulb on top of his head and he blurted out: "It could be Cystic Fibrosis" You don't just say that so bluntly. He sent me to a digestive Dr at a regular hospital where they did a sweat test. They weren't an accredited CF center so they didn't know what they were doing. They told me Cale was going through a phase. In the meantime I researched CF and Cale was so text book to the symptoms, so I told my reg Dr I wanted to go to the University of Iowa to the CF clinic. Right away they did more testing including the genetic test and we finally got a diagnosis. Not what we wanted to hear, but we were so relieved to know that we could help him and that I wasn't just being an overbearing mother. lol Since then he has doubled his size. His energy is amazing and he is so happy because he feels so much better.

Do you have a team of CF Drs for Ashton that can keep an eye on you and him during pregnancy? It is so important to have a staff that know about CF! Is he your first child?

I wish you and Ashton a happy and healthy delivery! Keep us updated!

 

[ReneeP]

Hi and Welcome Christi,

I have two daughters with CF. Kaitlyn is 10 and Kacie is 6. Kaitlyn wasn't diagnosed until she was 2 1/2 after several hospital stays and having been extremely ill since she was very small. However, thanks to Kaitlyn finally being diagnosed, when I was pregnant with Kacie we had an amnio and found out that she also had CF. (We knew nothing about the disease or genes prior to Kaitlyn's diagnosis).
When I was about 7 months pregnant with Kacie, they told me she had a bowel obstruction (via ultrasound). Due to the fact that I was going to have to drive 2 hours to the hospital to deliver, they induced me a week early. They had the pediatrician from Children's Hospital in the delivery room as well as his nurse. They were prepared to take her right away to Children's to do surgery. As it turned out she had no problem having a bowel movement and she was perfectly fine. She stayed with me in my room for two days and was released with me to go home. I was so relieved. And thanks to the early diagnosis, Kacie was treated right from birth and has never had the first lung infection. She has never wheezed, never had any kind of lung problem. She does have some sinus problems right now but that's it. Her sister suffered enough for both of them during the time of being misdiagnosed.

I know that having a child diagnosed with CF is a huge blow and very difficult to take. However, the diagnosis being done before birth is most definately going to help. Your baby will have a huge advantage in being cared for properly from birth and will most likely do very well. As far as the bowel obstruction, I hope they are wrong and Ashton will not have to have surgery. It most certainly happens. I know it did in my case. If surgery is a reality, I can't really help or offer advice there since I didn't have to go through that. I'm sure there are several people here who can help and I can offer prayers. Best wishes to you and Ashton. If there is anything any of us can help you with, feel free to ask. There is so much knowledge on this website it is unreal.

 

[ashton2005]

Yes we are being monitored by maternal fetal medicine and alread have a peds GI doctor. This is my second child but my first with my husband. I wasent even tested to see if i was a carrier with my first but she shows no signs or symptoms of the disease. she is almost 5 years old now.
It is nice to hear that some children arent developing the respiratory symptoms when they are getting diagnosed in the womb and getting treatment sooner. that is the same as what the pediatric GI doctor told us also is that the sooner the children are diagnosed the better they are handling the disease. Of course it is still hard when you really dont know how baby it will be when the baby is born or even how good it may be.. Which is what we are praying for.

 

[anonymous]

Our newborn with CF almost had to have surgery due to her blockage but instead they tried two barium enemas, the second one different somehow than the first and after the second, the obstruction passed and we had meconium/mucus everywhere. I was never so happy to see a baby go in my life! I don't know how they determine what to do first or if a blockage is the case for your baby but I thought I would share anyway just in case.

 

[anonymous]

My baby was born a year ago in October with a Meconium Blockage in her intestines. We still have to have the sweat test done at 18 months to rule out CF, but her initial blood test came back negative. She underwent 2 MAJOR tummy surgeries after my c-section and stayed three months in the nicu. Please feel free to email me if you want to further discuss this with a mom who's been there.

bacjkk@yahoo.com

Amy

 

[DebbieC]

I don't have any experiance bringing the baby home becasue I was the baby! I was diagnosed @ 5 weeks, failure to thrive. But I just wanted to let you know not to dispare. If you read the boards you'll see how many of us have extraordinary lives as adults, I'm applying to graduate schools right now! My parents never though I'd be doing that when they found out. I'm sending all of my positive energy your way!

 

[hopefulCFmom]

Hi Christi

My 2 year old daughter Emma was diagnosed at 6 weeks. She was having about 15 stools a day and failing to thrive. I was in shock when I first found out and it was very hard to deal with. It does get easier with time. Now, she is an energetic, happy girl. I'll be praying for you, your family and your little angel.

Take care

Mayra

 

[ashton2005]

It is really nice to have a place to go where you can get insight from other families.. Weve been looking for a site like this since we got the news. It would be really great if just using enemas worked for ashton but we will keep the other possibility with us also. we have switched where we are delivering at so that there will be a peds surgeon on hand just in case.
yeahopefully with him being diagnosed as early as he was we wont have to much to deal with in the way of bowel movement problems after he is started on the meds.
How many of you stayed home and didnt return to work or worked from home after having a baby with cf???

ash's mom

 

[hopefulCFmom]

I thought about quitting very seriously, but when I saw that she was doing so well I decided to go back. My mom and grandma live with me and they take care of her. I'm very blessed and get alot of help with my mom. We have decided though, that if my mom where unable to take care of her that I would quit work. It's a very hard choice to make. Good luck!

 

[anonymous]

Welcome-
Good idea to have already consulted a pediatric surgeon. I have a four-year old daughter, Sophia, and two-year old son, Jack. They both have cf. We were not aware that we were carriers. Sophia was diagnosed at five weeks old due to failure to thrive. My son showed a echogenic bowel at 24 weeks along so we knew he also would have cf. The surgeon planned on giving my son 10 days to clear the bowels. He would be on TNP (IV feeds). Jack would have gastrographin enemas as well a mucomist orally as well as a enema. Jack's intestines had stopped dilating at about 1 cm when I was 32 week along. I was induced a week earlier. I delivered at a Women's hospital down the street from the Children's hospital with the cf center. We ended up moving Jack to the Children's hospital after five days. What I found out was that the radiologists at the Children's hospital where much more familiar with meconium illeus and knew how to clear the bowels better. On the morning of day 10 and surgery scheduled at noon, the x-ray showed that Jack had finally been cleared, so he didn't need surgery. What a blessing! He went home two days later and has not had any intestinal problems since. I stay at home with Sophia and Jack, but I had always planned to stay at home.

Why would you have a c-section? Is it because your daughter was born by c-section. If not, it is best for the baby to be born naturally so the lungs can be cleared out during delivery.

Both of my kids are on preventative respiratory treatment and they need enzymes. They are healthy and have had few respiratory problems. But they lead a wonderful, normal life and they are such a blessing. Keep us updated on your sweet baby!
Sharon

 

[anonymous]

I just re-read my post and wanted to make one statement I made clear. Jack was induced 5 days before his due date, not at week 31. They wanted to keep him in-utero as long as possible, so his lungs could fully develop.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[julie]

Welcome Ashton's mom. I am the wife of a 24yo CFer (almost 25!!!!) so I dn't have much to offer in the baby department but I wanted to just say hi.

The best thing you can do at this point (and it seems like you are already doing a very very good job of) is advocate for unborn ashton. If you don't like something, you don't feel right about something, or you are really insistent about something being done a certain way.... PUSH it, this is your baby and they can't speak for themselves yet.... so don't be bashful. It sounds like you have a team of doctors who know what they are doing, that is wonderful! But don't ever feel bad about speaking up or pushing something you want or don't feel right about.

Please keep us updated as you get closer, I love seeing photos of these beautiful new babies!

 

[ashton2005]

good morning everyone.. i really appreciate all of the replies that i have gotten on here it is great to read. as for the reason for a c-section is that at my past 2 ultrasounds ashton has measured anywhere from a week to a week and a half larger that hes supposed to be. so the benefits with his size are leaning the maternal fetal medicine docs to a c section.
Yea i dont have anyone that lives with us other than a 4 year old and my husband so i am thinking about staying home and doing medical transcriptioning from home in order to take care of him and my other daughter who will start kindergaten next year.
i will know more after my next ultrasound on october 19 as to whether we are going to deliver early and by c section or not. i will definitely keep everyone up to date..

christi

 

[anonymous]

I stayed home. It was the right decision for our family. If that's what your heart is telling you, follow it, you won't regret it. Being a mom is a full time job in its own right but being a mom to a CFer can be like two jobs at times. I hope for your little one though that you have more easy times than hard and know that that is entirely possible!

 

[rose4cale]

I also started staying home after the diagnosis. But my husband also was transferred 2 weeks later so I had to quit anyway. We are being creative with earning income now. It has taken a toll on our savings so I am doing daycare at home, where I have control of his surroundings. Also I have applied for some night/weekend jobs this week so that I can GET OUT a little and earn some extra money. It is the right decision for us. I have tried to go back to work and personally felt so guilty. I don't by any means keep Cale away from social events or from going out. I just wasn't comfortable with it.

Long story short-I found out this week the sitter he went to while I tried going back to work...her husband abuses their son. Glad they were there only for a day.

 

[ashton2005]

Yea i think maybe eventually I may consider a few nights a week. i will definitely stay as needed with the hospital that i work for now so that i can do the night and weekend thing if needed. Yea we definitely will allow him to get out and about but as far as being in the day care setting i feel that it is for the best to keep him home and monitor his surroundings.
I believe with the knowledge that we have gained finding out in utero is helping us deal with what to expect after birth and in life. My husband finding a site like this is also helping when it comes to getting insight from other families. thank you all this is great.

christi

 

[ashton2005]

I thought of something else! Where is everyone from not all of the profiles show up. we are from indiana around the indianapolis area.