my new baby

[rubytuesday]

hi, my baby was diagnosed with cf from her newborn screening blood test. she is 4 weeks old now. i had no idea i nor my partner were a carrier so this was a massive shock. my partner reacted very badly to the diagnosis and so i became the strong one. it is now 3 weeks since she was diagnosed and i feel like i have not had the opportunity to come to terms with the fact my baby has this condition. I have had to be strong to make sure she has everything she needs and life continues pretty much as normal. However I feel i need to let the news sink in now, i have to deal with how i feel about it. I may need to scream and cry, i don't know. Has anyone else been in this situation where they feel like they are holding it together for the rest of the family. I need some advice, how do i deal with the way i feel when i am constantly comforting others? i know hardly anything about cf and i just need to know that others have been in the same situation and if so how did they cope?
thanks in advance to anyone that replies to me.
JW (mother to RS, 4 weeks)

 

[ashton2005]

Welcome! yes it is a major shock at first even if you do know before the baby is born. I cant say that it ever gets easier on anyone especially the one in the family doing most of the treatments meds etc... but eventually it just become natural and life and yes there are still days that are harder than others.. But believe me it does seem to get a little better.. Has your baby had any symptoms yet.. I feel that the more you educate yourself and have your family educate themselves also it should get a little bit better.. In my opinion there is also a book out there call the spirit of lo (www.thespiritoflo.com) and the story is great for everyone dealing with cf.. you can email me if you need to ccarder@indy.rr.com.. GOOD LUCK... your on a great forum hopefully it will be helpful!

 

[anonymous]

thak you so much for your reply!
yes she has had very frequent stools but i thought this was normal for a newborn baby, until she was started on creon enzymes, it is now much less frequent. she is slow to put on weight and does not even fit in newborn clothes yet. what s hard is not to panic every time she coughs! hopefully will get lots of support from this forum, its much needed - i feel so clueless!

 

[JRPandTJP]

welcome as well. I know exactly what you are saying. my soon is 22 months and I just recently felt like I have started coming to terms with all we endured last year prior to diagnosis (lots of tough things/hospital stays, NG tube, ect) and trying to just accept this label for my son. Last year, I had no time to really take care of myself...I had another child who needed me to be okay, I had a husband who was very torn up at first and I had an underweight baby to breastfeed and get back on track. It was alot to handle and incorporate at times. I really didn't let myself feel it all until recently when he weaned at 19 months. It was like it was all waiting for me and boy did it come. Suddenly, I could be away from him a bit longer and go do things for myself. I just spent a lot of time letting the emotions come as they needed to. I talked alot to be husband and family and I made sure to ask for time without the kids to just cry or write out my feelings (even if it was an hour). I went to the park one time last year without my little guy and just wailed all by myself for all the losses I felt, for the imagined future I saw due to too much information in the beginning, and for the guilt I felt about giving this to him.

I think for me it came in waves from the highest of hopes for this being a background to his/our life, to feeling completely powerless over it all. I made deals with god at times and just recently found that talking it over with someone outside the family isn't a bad idea or a failure. I chose a counselor who was knowledgable about post-traumatic stress disorder and energy therapies, but there is someone for everyone. I've only gone about 4 times and it has really helped me let go and stop some of the negative thoughts/feelings and move past it. I also felt it was a very private way to express even some of those things I couldn't say to my family members for fear they would loose it too.

All and all, I would say take your time with it and be gentle with yourself. You are in a very tender time being post-partum and it's okay to "loose it." It is alot to take in and we are the major caretakers so we often don't feel able to care for ourselves. I also felt alot of what I feared the most was just my imagination getting the best of me...I can't predict what this means for him or whether it will even be a big deal. I try to remind myself daily that he is healthy and may very well have little to no problems. Bringing hope to each day is what I try to practive every moment I can. Email me as well any time if you just need to vent.

Warmly,
Jody
jody@meta4tech.com

 

[Ratatosk]

I'm just not comfortable with expressing my emotions to other people except maybe my husband. I get uncomfortable with people trying to hug me or console me. So when our son was lifeflighted to a city 250 miles away for emergency surgery for a bowel obstruction -- an ob nurse came in an kept patting me on the shoulder, kept asking me if I needed anything, if I wanted to talk and I just wanted her to leave me alone so I could sob. In the NICU, there were three other newborns and their families plus two nurses -- I couldn't express myself there either. I'd usually wait until I got by myself in the bathroom or at night when I took a shower back at our hotel room. When we finally got to take our son home, people would ask me how he was doing and I'd get all choked up and teary. I'd usually just say he was fine -- that he's doing great now because I wasn't able to explain things without crying.

It was difficult to come to terms with the diagnosis. That our hopes and dreams for our new baby might have changed. The responsibility of a newborn, plus extra things like treatments, enzymes, medications, nebulizers, what normal poop is supposed to look like -- I could never ever get a clear answer on that one...

Liza

 

[anonymous]

thank you jody,
what you said really helped. I know i'm not alone but sometimes you just need to hear it. its people like you with kind words and good advice that make me realise that. i know i'm a newcomer to cf but maybe i could be a support for you and others too at some point.

Jo
wheatlj@hotmail.co.uk

 

[anonymous]

Hi Everyone --

As the mom of three, two with CF (ages 12 & 10), I have a few more CF experience years on a couple of you. My advice is this... take living with CF one day at a time. Do not think about what lies ahead...there is no reason at this time, to fill your head with the what ifs. Each CF person has much different health conditions. This is even apparent between my two girls. I dont think as a very new mom you need to hear everyones elses horror stories.

It is very important that you take care of your baby as best you can and get rest.
Enjoy every minute, CF moms are blessed with the knowledge that life can be shorter than expected and we tend to enjoy life more. At least we do here!!

Remember, also that typically the first year is the hardest. The babies lungs are smaller and thus its air openings. The Dr is still learning about your child and its individual symptoms so there could be alot of medicine changes.

Please free to let your emotions out and dont feel guilty about it. Hug and kiss your baby for me and feel free to contact me, if you need anything. Keep positive...your views and attitude towards CF will pass onto your child.

Debra1202@optonline.net Sincerely, Deb<img src="i/expressions/heart.gif" border="0">

 

[JRPandTJP]

Debra, I am just starting to sense what you are saying about being reminded of what is important in life. Sometimes I just stare at both my kids playing and soak up every minute with this incredible sense that so much of life is really silly "filler" time. The moments we can just "BE" with them with no other thought or worry is what life is all about. We are fortunate indeed to have that reminder.

I also couldn't spend much time on the internet and boards most of last year as I was terribly sensative to hearing other's tough times. I really censored what I exposed myself to only picking certain topics that I knew would answer my question without too much info. My husband on the other hand, was very active on the internet and researched tons about supplements, alternative therapies ect. I think he felt empowered and encouraged by how much we as parents can do to support our kids nutritionally. I just did what he suggested and couldn't really go there...I just didn't want to even hear the word CF at times. That's okay too.

Oh,and Jo, you already are helping us just by being a part of this extended community we call CF. Just always hold in your heart that he picked you for a reason...because he saw inside your heart and knew you'd let him soar to the heights and depths he needs to in this life...that you would be his partner, his advocate, his soft place to fall each and every day.

Sincerely,
Jody

 

[anonymous]

I just wanted to welcome you to the forum and let you know you've gotten some great advice already. Everybody deals with CF in their own way. Someimes I would find myself getting irritated with my husband because he is so positive, sounds wierd I know. That let me to be the one to worry, the one to research everything, ask the questions etc. I think there is an adjustment period and that changes with time.

Also, know (I know I'm biased) children with CF are truly amazing. My daughter with CF is so positive about everything. She loves everything, hardly ever hear a negative word out of her mouth. She is always smiling and enjoying the moment.

Rebecca(mom to Sammy 7 no CF and Maggie 3 with CF)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[monkey]

JW,

On one hand, I am sorry to hear of your news, but on the other hand not. Read on. This may be shoppy and all over the place, but wind me up, cause here I go: I can tell that you are grooving right into that good place as a parent that just says "this is the hand I've been dealt, I'm going to be a glass-half-full kind of parent". Keep in mind that you are going to fall more madly in love with that baby day over day. You'll just look her in the eyes and cry because SHE WILL display resilience that you know you couldn't even display yourself. (I have TONS of examples of this phenomina!) She is going to have plenty of challenges and you tell yourself over and over that it's just not fair. She does have a wicked illness, BUT she has zero mental deficiencies. She has no physical deficiencies (appearance). I have said this many times, you could have lived in our house over the last 5 years, and our Ryan (5 yrs old w/ CF) has probably been the most outwardly healthy member of our family. It's time to buckle down as a parent and be extremely meticulous with her treatments. Never miss a day...IT PAYS OFF! Always wash hands. Always wash her hands. Be smart....keep her away from smokers, give her tons of high calorie foods, but also healthy foods. Fruits, veggies. (BTW, how great that she gets to eat all the triple meat and cheese pizza she wants?!?!? I wish I could!) If she starts to get sick, just freak out and nurse her back to health...lots of PT and then some more, lots of rest/sleep, diligence with meds, and no letting her feel beat down. Attitude!

Try to keep her away from friends who are always sick...there are lots of them :-( Love her. Love her. Love her. Look in her eyes and smile at her. Let her know she's special. Make her run around like crazy.....get those lungs working. Wrestle around with her...might not be bad if she's a tom-boy? Even though she's a girl, tell her she's "tough", and thus it will be - that's good. Minimize TV. Love her. Tell her father to love her too....maybe share this note with him? He neeeeeds to be there for her, however he can.

When Ryan was born, life expectancy was 32 years and 5 years later, it's 37! I've got news for you.....your baby is going to out live you ;-) It's going to be tough going now, but this is your calling. Be there. Make it happen! She needs you, and you'll deliver, right? She's not a freak. She's a beautiful soul and don't forget it. It will be frustrating, those nights where you just want to put her to bed because you're both tired, knowing you have to do her chest PT? Do the chest PT. Those times you leave the house and forget her enymes and think about driving on...don't do it! Go back and gt them....

In a weird way, I am almost grateful for Ryan CF...seriously. I love him 101% EXACTLY like he is, and if he didn't have CF, he wouldn't be the awesome little rascally dude that he is. His smile lights up a room and especially my heart. (BTW, he doesn't have a "mild case". He has Delta 508, which is the common form.)

OK, my fingertips hurt. I just want you to believe with all of your heart that it's going to be OK. Brutal days? Yes! But overall, she's going to be a little rock star, and her resilience will touch so many people. Keep your chin up...it's going to be good.

Very best wishes.
Dan Flaharty
Husband of Lora
Father of Megan, 8 w/o CF
Father of the silly little monkey named Ryan, 5 w/CF

 

[anonymous]

To Dan--

WOW!!! What an awesome note you wrote to JW. As someone who has CF all I will say is that your children are blessed to have you as their dad.

To JW--

Congratulations on becoming a mom. You will be a great mom especially if you follow Dan's advice.

 

[izemmom]

Dan

I LOVED your post. Oh how I wish I had read it when I was the one holding it all together (most of the time) for everyone at the 1 month post dx mark. You are so right. I am printing this to re-read on the brutal days. Original poster-hang in there. It gets better. Keep coming here. These guys can see you through ANYTHING!

 

[rubytuesday]

dan, what a fantastic response! thank you. i have printed it to read when i need a bit of a reminder of how lucky i actually am! keep using this forum - i'm sure you'll be able to help others just as much as you've helped me

Jo
mum to Ruby, 4 weeks

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>monkey</b></i>

JW,



On one hand, I am sorry to hear of your news, but on the other hand not. Read on. This may be shoppy and all over the place, but wind me up, cause here I go: I can tell that you are grooving right into that good place as a parent that just says "this is the hand I've been dealt, I'm going to be a glass-half-full kind of parent". Keep in mind that you are going to fall more madly in love with that baby day over day. You'll just look her in the eyes and cry because SHE WILL display resilience that you know you couldn't even display yourself. (I have TONS of examples of this phenomina!) She is going to have plenty of challenges and you tell yourself over and over that it's just not fair. She does have a wicked illness, BUT she has zero mental deficiencies. She has no physical deficiencies (appearance). I have said this many times, you could have lived in our house over the last 5 years, and our Ryan (5 yrs old w/ CF) has probably been the most outwardly healthy member of our family. It's time to buckle down as a parent and be extremely meticulous with her treatments. Never miss a day...IT PAYS OFF! Always wash hands. Always wash her hands. Be smart....keep her away from smokers, give her tons of high calorie foods, but also healthy foods. Fruits, veggies. (BTW, how great that she gets to eat all the triple meat and cheese pizza she wants?!?!? I wish I could!) If she starts to get sick, just freak out and nurse her back to health...lots of PT and then some more, lots of rest/sleep, diligence with meds, and no letting her feel beat down. Attitude!



Try to keep her away from friends who are always sick...there are lots of them :-( Love her. Love her. Love her. Look in her eyes and smile at her. Let her know she's special. Make her run around like crazy.....get those lungs working. Wrestle around with her...might not be bad if she's a tom-boy? Even though she's a girl, tell her she's "tough", and thus it will be - that's good. Minimize TV. Love her. Tell her father to love her too....maybe share this note with him? He neeeeeds to be there for her, however he can.



When Ryan was born, life expectancy was 32 years and 5 years later, it's 37! I've got news for you.....your baby is going to out live you ;-) It's going to be tough going now, but this is your calling. Be there. Make it happen! She needs you, and you'll deliver, right? She's not a freak. She's a beautiful soul and don't forget it. It will be frustrating, those nights where you just want to put her to bed because you're both tired, knowing you have to do her chest PT? Do the chest PT. Those times you leave the house and forget her enymes and think about driving on...don't do it! Go back and gt them....



In a weird way, I am almost grateful for Ryan CF...seriously. I love him 101% EXACTLY like he is, and if he didn't have CF, he wouldn't be the awesome little rascally dude that he is. His smile lights up a room and especially my heart. (BTW, he doesn't have a "mild case". He has Delta 508, which is the common form.)



OK, my fingertips hurt. I just want you to believe with all of your heart that it's going to be OK. Brutal days? Yes! But overall, she's going to be a little rock star, and her resilience will touch so many people. Keep your chin up...it's going to be good.



Very best wishes.

Dan Flaharty

Husband of Lora

Father of Megan, 8 w/o CF

Father of the silly little monkey named Ryan, 5 w/CF</end quote></div>


Well said, that was lovely.

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Augustmom0003]

Dan,
What a beautiful post! You should write an "essay for newly dx'd families" <img src="i/expressions/face-icon-small-blush.gif" border="0">)

JW,
You'll be amazed what a year will do. Even a few months. I was in the same position. Basically still the "strong one" to THIS day, but that's okay. Those first few weeks, I kept thinking "I'm not strong enough for this! I'm not!" You'll find strength along the way. You'll break down along the way. You'll find more strength even after those breakdowns. You'll cope, you have no choice...and there will still be fleeting moments, years down the road, where you'll find yourself thinking "I still can't believe this". But, your world will change, not just for the worse, and there will be a time when life with cf isn't the horrible life you had pictured. It won't be this huge shock anymore. I can't even really remember life before CF now. I see parents with babies now and they'll start to give their baby a bottle and I think "Oh, don't forget the enzymes"...then I laugh and remember that not every baby takes enzymes! lol!

You are in a new world now and you will find that your new world holds some of the greatest experiences and the greatest people that you almost never knew...and you wouldn't know what to do without them <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Amanda
Mommy to Kenzie (5, cf carrier) and Ethan (2, wcf)
www.fightforethan.com

 

[lesnmichele]

Please just deal with all the issues now, unlike me who had to go through my dealing with a son with CF, through drinking, drugs and now food!!! My son is now 13 years old (doing really well) and I just now am starting to deal with it! Good luck and just dont be afraid to have feelings, you dont have to be strong all the time!