Amnio results indicated the baby has CF

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anonymous

New member
I just wanted to give you a pat on the back for your support and concern for your baby and I am proud of you for keeping your pregnancy, some others would not have. I don't know how often you check this site, but I'd like to offer any advice I could help you with (I am 27 year old, ravishing, smart, witty, etc. woman with CF). On an infants note, my sister has a daughter (she is 5 now) who has CF. So she could help with any baby questions because she has been through a lot. So please don't hesitate to ask. I don't think that there is anything that you need to change in your house, per say, of course you know not to smoke or let others smoke. That's obvious. I think just being aware of this illness and keeping yourself educated and informed is the best. Watch out for the "failure to thrive" (weightloss, loose-frequent stools, eating like crazy) at first, perhaps your child could need enzymes. (My niece needed them immediatly) One bit of advice would be, do not hesitate to call and ask your dr's any questions. Bother the crap out of them if it helps you. They are there for you, so don't second guess yourself or the care you are providing, just check with them for anything. And good luck to you. You can do this, it is not always easy, but honestly, I could not imagine my life without CF. It may sound weird, but I am the person I am today, in part, to this disease. I have CF, CF doesn't have ME!
Best wishes,
Kelli Love-Bowles
kellimylove@hotmail.com
 
A

anonymous

New member
I just wanted to give you a pat on the back for your support and concern for your baby and I am proud of you for keeping your pregnancy, some others would not have. I don't know how often you check this site, but I'd like to offer any advice I could help you with (I am 27 year old, ravishing, smart, witty, etc. woman with CF). On an infants note, my sister has a daughter (she is 5 now) who has CF. So she could help with any baby questions because she has been through a lot. So please don't hesitate to ask. I don't think that there is anything that you need to change in your house, per say, of course you know not to smoke or let others smoke. That's obvious. I think just being aware of this illness and keeping yourself educated and informed is the best. Watch out for the "failure to thrive" (weightloss, loose-frequent stools, eating like crazy) at first, perhaps your child could need enzymes. (My niece needed them immediatly) One bit of advice would be, do not hesitate to call and ask your dr's any questions. Bother the crap out of them if it helps you. They are there for you, so don't second guess yourself or the care you are providing, just check with them for anything. And good luck to you. You can do this, it is not always easy, but honestly, I could not imagine my life without CF. It may sound weird, but I am the person I am today, in part, to this disease. I have CF, CF doesn't have ME!
Best wishes,
Kelli Love-Bowles
kellimylove@hotmail.com
 
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HollyCatheryn

New member
Allan - glad to see such caring motivated parents. Your child is blessed and will do better simply because you are educating yourselves. I would encourage you to breastfeed (if not exclusively, then add supplements). Colostrum, the first milk has great blockage clearing enzymes in it. It also is very easily digested and has all the antibodies that will keep your baby his healthiest until his immune system developes which takes about 6 months. I know that he may need digestive assistance with pre-digested formula, but he can still get the antibodies and nurturing from the breastmilk. Many babies with chronic illness also have a greater need to be held, carried and to suck. This is for the extra energy and physical support that it takes to fight malfunction or achieve developement in the face of obstacles. Breastfeeding offers these. Also get a good sling, so that you and your wife can carry him while still having hands-free to do what is necessary. Many babies have food sensitivities (they usually grow out of them in the first couple years) so if you've been doing things as the Dr says and all of a sudden he changes (grumpy, colicky, unhappy, squirmy, sleepless, gassy) suspect a dietary issue. The easiest thing with little babies is just to take one thing out of your wife's (if she's nursing him) diet or his (cow milk, wheat) at a time until he returns to normal. It would be good to get in contact with a La Leche League in your area (breastfeeding support group). They have great resources for helping moms with special needs babies and for information on antibiotics safety for infants. Attatchment Parenting groups or websites also have good resources for parents with high-needs babies and the health benefits of practices like carrying (apconnect.org is one I like or do a google). Babies with CF needs everything that babies without CF, just in larger doses.
 
A

anonymous

New member
I thought I should follow up...

About 3 weeks prior to my wife's due date they induced due to suspected meconium ileus. Aiden was born 3 weeks early. He had to undergo surgery at 45 hours of age for meconium ileus and malrotation (non CF). He was in the NICU for almost 3 weeks before we got to bring him home. His liver numbers have finally reached normal and biliary atresia was suspected but ruled out at the surgical consult (thank goodness). He has also had a couple of rounds with c.difficil.

He is a great, happy baby and we are thrilled. The medical support has been outstanding during these exciting and scary times. He is currently on enzymes, CPT, and quarterly clinics.

Everything happens for a reason, because of his CF diagnosis he was being monitored for meconium ileus and they were also able to diagnose the malrotation. <a target=new class=ftalternatingbarlinklarge href="http://www.ugabulldogs.com/bmw/aiden4m.jpg">Aiden 3 months</a>
 
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Beth

New member
He is beautiful. You must be so proud. I'm glad everything is going well for you. Hopefully it continues that way. Best wishes, Beth
 
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SeasonsOfLove

Guest
He is a beautiful baby and I'm glad you're all home together now - enjoy!

<img src="i/expressions/sun.gif" border="0">
 
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Diane

New member
He is ADORABLE!! Enjoy every second with him, they grow up fast. My best wishes<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
A

anonymous

New member
Allan,
I am 26 weeks pregnant and due 9/5/05. My step-son has CF so we are very familiar with the disease. I found out I was a carrier and that of course is what encouraged the amnio which revealed our baby has CF. A L2 u/s was done prior to the amnio which did show an echogenic bowel (this is bright spots in the bowel, not the bladder). I am very disappointed that after the amnio confirmed the baby has CF my primary doctor has not recommended ANYTHING. I am going to a Naval Hospital because my husband is in the military so I have to have a referral to see any type of specialist. I did receive a second L2 u/s after the diagnosis but the ONLY thing any one say's about it is "Yep, it looks bright" and I know there must be more to it than that. The perinatologist that did the amnio recommended that I deliver at there hospital which is about 45 minutes from where I live, because our hospital is not equipped to handle any emergency situation and the baby would have to be flown to another hospital if surgery is needed. However, my doctor said, " I don't see any reason for that, most baby's born with CF are fine at birth." and while I know this is true I'm very frustrated at his lack of concern. I cannot go to the CF clinic and meet with them because I cannot get a referral :-( This whole situation is stressfull.
I originally wanted to wait to find out the baby's gender but after the diagnosis I had to know. Honestly, I was hoping for a boy. I don't know why but I feel as though boys are tougher and can handle more. I look at my 3 year old daughter I can't imagine her with this disease, she's so little and girly. I know plenty of people will disagree with my thinking, but its just the way I feel. Anyway, the baby is a boy, Andrew.
I wish you and your wife the best and good luck with the breastfeeding, I'm going to try it myself even though I refused to even consider it with my other children I am going to try my hardest for this little guy.
Jen
 
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anonymous

New member
What a sweet baby. It's hard to look at that picture and not smile, he is precious!<img src="i/expressions/present.gif" border="0">
Elle
 
A

anonymous

New member
Jen, I am active duty navy and work at a hospital. Your OB doctor who is saying you don't need to go to a CF Clinic yet, or deliver at the other hospital; CANNOT deny you that right. It's called "the woman's right to choose" and if you choose to become disengaged and go to an outside hospital to deliver your baby-they ABSOLUTELY have to disengage you. If you have this talk with the doctor (respectfully-military doc's are sometimes hoity toity about being right) and he still refuses to do so, ask to talk to the head of the department. If that doesn't resolve the situation (which it should) you need to go to your local tricare office (don't call, they are really stupid on the phone) and tell them what you have requested, why the doc is denying it and request that they assist you.

You need to fight for your rights on this one, I know it's difficult, and I am not sure if you feel intimitated or anything-but don't. You need to get down and dirty sometimes to get your needs met!

Julie (wife to Mark 24 w/CF)
 
A

anonymous

New member
Thanks everyone!

Jen-

We had to get the referral to the CF clinic through the OB. Find out who the referral people in each office are and work with them to work within the system. Thank you's and please help me understand's go a long way to navigating the insurance referral systems.

Our perinatologist made the call for inducing based on what he saw and notified our OB and neonatologist. The statistics indicate that only 10-20% may require surgery for meconium ileus. Even if that is the case, they gave Aiden almost 48 hours to pass it on his own before transporting him to another hospital for surgery. He had the additional complication of malrotation. They usually discharge the Mom within 48 hrs for natural so you should be able to go with your child or shortly there after.

Your doctor may not have priviledges at the other hospital and that is why he is reluctant to recommend delivery there and that it is 45 minutes away. Unless you are scheduled to be induced or c-section, you and he may not be able to make it there in time.
 
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anonymous

New member
Re: Allan's original post - "I was also looking into UV sytems for the house for preventative measures to kill viruses, bacteria, etc..."

If you are on a public water system you should not have bacteria (they treat all public water with cholorine). Get it tested to be sure ($15-$50 depending on what all you test - tell them you're having a baby and they'll tell you what to test for). We have well water and have bacteria. We're getting a UV light for that reason. From our research - prices range from $700-1500.

We thought about just sticking to bottled water (as you might) but figured if we go to sell we'd have to fix it then anyway . . .

Jason 30 w/cf
 
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