Oh and DS has been hospitalized twice. First time when he was born, second time when he was about 6 years old due to a bowel obstruction. I was TOTALLY freaked out by parents of CFers who called me to offer support when DS was a newborn because they told me horror stories about how the first couple years they were in an out of the hospital due to illness. DS was actually the healthiest kid in his daycare. He had a couple ear infections and colds his first year and a stomach bug, but that was it. He didn't miss any kindergarten or 1st grade due to illness and last year he did miss a couple days but it was a normal run of the mill stomach bug. DH and I were flabbergasted because we weren't quite sure what to do since we hadn't been used to ds being ill.
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Newborn just diagnosed and I M FREAKIN OUT
- Thread starter Dowling
- Start date
Aboveallislove
Super Moderator
Dear Mom,
I'm so sorry. I lived through what you are going through a little over 3 years ago. It is horrible, but it does get better. It is a process and everyone does it differently. I'm pasting 2 threads you might find helpful:
http://forum.cysticfibrosis.com/threads/29582-What-do-you-wish-you-would-have-known
http://forum.cysticfibrosis.com/threads/29579-Grandson-diagnosed-with-CF-through-Newborn-Screening
Also, re your question of will you ever have time for them--YES. You will make it work. Your schedule at first will be so hard b/c you have a newborn besides having the CF stuff. But you'll get into a routine and then in a few months the routine will change. A few thoughts for now: Maybe make the treatment times "video" times or "book time" for the other kids--they can sit and watch videos with you while you do the treatments with the baby. Maybe do one early am or late pm before the others are up, if you are up with the baby anyway. 4x a day is when they are sick. Our son is just a bit over 3 and has had lots of GI issues but has never been sick other than that. Each child is different but if you are religious about the treatments, there is more of a chance that the illnesses will be few and far between.
hugs and prayers .
I'm so sorry. I lived through what you are going through a little over 3 years ago. It is horrible, but it does get better. It is a process and everyone does it differently. I'm pasting 2 threads you might find helpful:
http://forum.cysticfibrosis.com/threads/29582-What-do-you-wish-you-would-have-known
http://forum.cysticfibrosis.com/threads/29579-Grandson-diagnosed-with-CF-through-Newborn-Screening
Also, re your question of will you ever have time for them--YES. You will make it work. Your schedule at first will be so hard b/c you have a newborn besides having the CF stuff. But you'll get into a routine and then in a few months the routine will change. A few thoughts for now: Maybe make the treatment times "video" times or "book time" for the other kids--they can sit and watch videos with you while you do the treatments with the baby. Maybe do one early am or late pm before the others are up, if you are up with the baby anyway. 4x a day is when they are sick. Our son is just a bit over 3 and has had lots of GI issues but has never been sick other than that. Each child is different but if you are religious about the treatments, there is more of a chance that the illnesses will be few and far between.
hugs and prayers .
My daughter was diagnosed at 2 days old. I was devastated, and did so many crazy things... For instance, I had her bassinet right next to my bed and the baby monitor right next to my ear. I held her all day and watched and counted every breath she took. If she coughed or sneezed I called the doctor. The craziness went on and on, until one day wonderful Dr. at Childrens Hospital Los Angeles pulled me aside after one of her appointments and asked me point blank " Have you put a death warrant on your daughter?" I was speechless, I didnt answer , I just cried. He told me to get a grip , stop obsessing over her CF and to start living as if there was nothing wrong with her. Of course in my head I thought..Oh yeah easy for you to say. I wish I had joined a support group, somewhere I could go to where people like me had children with CF. I was stubborn and I was going to battle this on my own. I wish I never had, I needed support and information, and encouragement from other families that were going through the same thing. Today my daughter is 17 years old, in her Senior year in high school, plays basketball on the varsity team at Bishop Alemany High school, runs track, has a boyfriend, and goes to all her high school events. We do have had our moments when my daughter has been hospitalized, but we all got through it. And she does get sick with her colds and coughs and I still worry terribly, and I still go in her room at night to see if she is breathing comfortably, but I dont Freak Out anymore... Join a group, keep informed, let go and enjoy your baby... They grow up fast and you dont want to miss a thing. Dayna was featured in an article in the Los Angeles Daily News, if you want to read about her it is under "My Hero" Good Luck to you and your precious baby.
Baby girl update
My daughter has put on 9oz in 4 days since starting on creon! Super excited. Dr said she is thriving
My 11 day old daughter was diagnosed with CF 2 days ago from her newborn screen. I AM FREAKING OUT!
Any advice on what our day to day life will consist of
My daughter has put on 9oz in 4 days since starting on creon! Super excited. Dr said she is thriving
isabella Mendoza
New member
newly diagnosed baby
Alright, I rarely post, but I don't think anybody mentioned breastfeeding. Are you breastfeeding or breast-milk feeding Dowling? Its a great way to provide immune protection and avoid constipation for the baby and nobody else can do it. Just thought I'd add my .02. Both of my boys have cf, one was diagnosed at 4 years old and the other at 2, and I honestly think that the reason it took them so long to figure out that my oldest one had it was the breastfeeding. Once he was no longer feeding at the breast THEN he began to fail (your baby won't, don't worry! you already know what he has) and THAT's when they began searching for answers. When they found it, we instantly knew his brother had it too (same symptoms).
Just to let you know, they are both fine, had "relatively" normal childhoods, have great memories of growing up, family trips, etc., and are both through college now. And YOU have the advantage of lots of amazing treatments we didn't have. Treatments will only get better and better. Good luck! Isabella
Alright, I rarely post, but I don't think anybody mentioned breastfeeding. Are you breastfeeding or breast-milk feeding Dowling? Its a great way to provide immune protection and avoid constipation for the baby and nobody else can do it. Just thought I'd add my .02. Both of my boys have cf, one was diagnosed at 4 years old and the other at 2, and I honestly think that the reason it took them so long to figure out that my oldest one had it was the breastfeeding. Once he was no longer feeding at the breast THEN he began to fail (your baby won't, don't worry! you already know what he has) and THAT's when they began searching for answers. When they found it, we instantly knew his brother had it too (same symptoms).
Just to let you know, they are both fine, had "relatively" normal childhoods, have great memories of growing up, family trips, etc., and are both through college now. And YOU have the advantage of lots of amazing treatments we didn't have. Treatments will only get better and better. Good luck! Isabella
azdesertrat
New member
Very good to hear! Keep up the good work. You can do this!
Aboveallislove
Super Moderator
No. The mucus is completely different. There is a med called Pulmozyme (sp?) which "cuts up" the DNA that makes the mucus so thick, though. I strongly recommend asking to have your daughter started on that at 2 - 3 months. Will depend on how proactive your CF Clinic/doctor are though, if they will do.
To the new mom:
I know it sounds hard, but take a deep breath. CF sucks, I won't lie. But there is never a day when I'm not grateful for my life. Your daughter will give you tears, just like I've given my parents, but there's also a lot of joy yet to come in your life. If you ever want to talk privately, I'm more that willing to answer any and all questions you may have.
Brittany
I know it sounds hard, but take a deep breath. CF sucks, I won't lie. But there is never a day when I'm not grateful for my life. Your daughter will give you tears, just like I've given my parents, but there's also a lot of joy yet to come in your life. If you ever want to talk privately, I'm more that willing to answer any and all questions you may have.
Brittany
There is hope - I am 37 years old, have CF and very healthy. When I was born the outlook was very bleak, but thankfully my mum was a nurse and kept me well.
I had a very normal childhood and was never made to feel different, which I am very grateful for. Airway clearance was always a game (eg tickling, blowing up balloons, running races etc).
I have now written a blog with tips on how to stay healthy with this condition. http://www.cfandhealthy.blogspot.com.au/
There has never been a better time to be diagnosed with CF than now, as there is a lot of exciting research going on and a 'cure' will not be far off.
I had a very normal childhood and was never made to feel different, which I am very grateful for. Airway clearance was always a game (eg tickling, blowing up balloons, running races etc).
I have now written a blog with tips on how to stay healthy with this condition. http://www.cfandhealthy.blogspot.com.au/
There has never been a better time to be diagnosed with CF than now, as there is a lot of exciting research going on and a 'cure' will not be far off.
S
Swallowtail66
Guest
Take a deep breath and look at that precious child. It will be okay. You are blessed with an early diagnosis and not to have to take a sick baby from doctor to doctor begging for care. You can optimize her care from the start and make sure she has the best opportunities for health. My children are 22 and 15 and are amazing girls. The 22 year old balances a social life that would leave me under a rock, 30 hours of work a week, and college. My 15 year old is in high school doing what normal kids do. Sometimes we take time out to go the hospital and be sick. But they are regular kids. Without compromising her health, treat her like a regular kid. Make her do chores, patch her knees up for the 10th time she falls off her bike, let her date, ground her when she is late, all the wonderful things of growing up. I don't know about CF baby care because my kids were older when diagnosed. I was the mom running from doctor to doctor..., but people here do. You have found a wonderful place to connect and learn and lean on when needed. Good luck.
CrisDopher
New member
Dowling, I do two breathing treatments a day while I do my Vest. My nebulizers include albuterol, pulmicort, hypertonic saline, Cayston or Tobi (alternate months), and pulmozyme. It took a long time to build up to having to do five medicines each time. It's a routine part of daily life and not a huge hassle, really.
As others have noted, getting into the habit of PT early is important. I got my twice-daily "beatings" since the earliest I can remember and was very healthy throughout childhood and well into adulthood (before first starting to see my PFTs decline).
You don't have to be any more of a germaphobe with your CF daughter than with your other kids. The infections she'll get, she'll get because the bacteria are omnipresent in our environments - you can't sanitize the whole world. And she needs to get the same colds and flus and chicken pox that every other kid gets. Her immune system is just as active and healthy as anybody else's. But because of the phlegm, colds can sometimes get entrenched in the chest and she may need help getting over that. Keep in mind that antibiotics are only effective against bacteria, not viruses. There is still no cure for the common cold, other than your body learning how to fight it off by acquiring quite a few in your childhood!
As others have noted, getting into the habit of PT early is important. I got my twice-daily "beatings" since the earliest I can remember and was very healthy throughout childhood and well into adulthood (before first starting to see my PFTs decline).
You don't have to be any more of a germaphobe with your CF daughter than with your other kids. The infections she'll get, she'll get because the bacteria are omnipresent in our environments - you can't sanitize the whole world. And she needs to get the same colds and flus and chicken pox that every other kid gets. Her immune system is just as active and healthy as anybody else's. But because of the phlegm, colds can sometimes get entrenched in the chest and she may need help getting over that. Keep in mind that antibiotics are only effective against bacteria, not viruses. There is still no cure for the common cold, other than your body learning how to fight it off by acquiring quite a few in your childhood!
Thanks so much! My problem isn't was the opposite of a germafobe with my older two . I never made anyone wash their hands and had them around tons of germs from the get go. And they never got sick. So this is all new to me. I find myself running out and buying a hepa filter f
azdesertrat
New member
Trisha, you nailed. it! You need to slow down. Absorb all the info you can, but you don't have to rush to do it. There are plenty of people here that genuinely care & will do anything they can to help, encourage & inform you. We didn't have things like this forum when I was a kid. I would have loved to have had access to this especially when I was a teenager! Take care dear, you'll be OK & so will little Rowan. You're in our thoughts & prayers & you know you can always call me if I can help. I mean that with all my being...
A
all4Eden
Guest
Hey! Phoenix Girl!!!! Chill!!!! God is in control. Pay attention to these guys here. Lots of suggestions and ideas that are coming from people who've being there. We a 10 year Princess diagnose with CF at PCH too. We live in Yuma but we go to Tucson. Remember, you are the parent. Not the patient. Is something is not right. Speak up. Doctors like shove medicines into your kid. Study the disease. Do your own research and your own homework. The PHX and Tucson team are good, but don't let them walk all over you....
Marina Louise Oneill
New member
i knew when i was pregnant that savannah might have it at 3 months old my daughter was admitted to chop for a failure to thrive now they have fully diagnosed her with cf i know how you feel hang in there you will be okay its so tough but god will get you through it
S
scm1226
Guest
Addison is 8 months old on Sat. We found out she was DDf508 through invitro , went cried we cried and we freaked out. But we also met her team at the CF center and got to know them before she was even born. Today she is currently having a single Neb treatment of abuteral and pulmyzine. We give her her enzymes at every meal (we call them sprinkles). But all in all she is doing fantastic. We bring her out and about making sure no one is sick where we are going or to people's houses who smoke, she is doing great.
Her big sister 2 1/2 non CF loves her and wants to help with her love taps. She is
laughing ,crawling ,even picking herself up now. She is just like her older sister and doing everything way to early. Your child is going to grow up and ey are going to be great because you love them.
good luck,
love your child they will love you back.
Her big sister 2 1/2 non CF loves her and wants to help with her love taps. She is
laughing ,crawling ,even picking herself up now. She is just like her older sister and doing everything way to early. Your child is going to grow up and ey are going to be great because you love them.
good luck,
love your child they will love you back.