Long post: my baby has cf :(

jhjocelyn · January 2014

I’m one of those in and out lurkers, I’ve been around since probably July, was active until the fall when my workload changed my entire bump-ability, and have been trying to be more regular since. I just figured out I can post from my kindle, so you should see me around more. Plus, the kind of support that exists here is going to be very helpful in the days ahead… I do understand that support goes both ways, so as I get more involved it won’t just be whines (if it is, call me on it, I’m tough .

After an uneventful, like-clock-work birth, we had our perfect little girl on the 13^th. I’ll write a true birth story someday, but I won’t bore you all now. Bottom line: straightforward labors and recoveries do exist. I didn’t believe it myself, but we were blessed with just such an experience.

It’s been a rough couple of days. LO has been diagnosed with Cystic Fibrosis. We knew there was a chance she would have it, and throughout the pregnancy were being monitored, but it was just confirmed yesterday. It’s been tough to process as parents, as individuals DH and I react very differently, then we had to tell our families, who are also very different, and each family member has had differing reactions too. Thankfully, mine is farther away and much more laid back. We’re all Christians and have strong enough faith to support us, but that doesn’t mean it’s all easy. DH’s family is nearby, and just wants to be here. This is their first grandchild, it’s hard because as well meaning and loving as they are each of their reactions have been so-not-helpful. Poor DH has had to take the brunt of it. His sister talked to me, and is probably the most sane of the bunch. His mother just wants to come right over and talk(nonstop). His father told him not to get too worked up, the tests could be wrong (it was confirmed at 98% positive). His brother tried to be supportive using faith, saying no matter how long she lives she’ll be safe spiritually(that’s true, but not what you say the first day of the news).

Now, we have to battle things like FIL won’t get a flu shot MIL told him he won’t be allowed to hold the baby till summer, apparently he’s okay with that (which SIL told me but not DH… now I get to tell him why his father’s not excited about coming around). BIL and his wife wanted to stop by, but I remembered that she had a cold when they visited in the hospital (she knew not to get close or hold LO at that point). We asked if she was over it and they said she had a sore throat and stuffy nose this morning. Well then no, you are not coming to my house, my child can’t take that risk. UUGGHH… I hate policing family, and it’s only just begun.

AANNDD we don’t like the pediatrician, so we’re on the hunt for a new one… that’s a whole different post though.

If you made it this far, thanks! I’ll try to include a pic, but I’m very good at it…

SandFHasse · January 2014

I'm sorry you are going through all of this! She is a gorgeous little sweet pea!

BuckeyeMommy4 · January 2014

I'm sorry you're going through all of this!

If it makes you feel any better, I know a young girl with CF that is 23 and married and about to adopt a baby. Every once in a while she'll have a rough time and have to be hospitalized, but for the most part she is doing great.

jhjocelyn · January 2014

Thanks, it's certainly hard to handle it, plus the crazy hormones anyways, and dh just read my post over my shoulder and it probably upset him more. So, we'll be in for that awkward emotional kind of evening...blech.

Jmattis · January 2014

My heart breaks for you and your family. I'm so sorry you are going through this. She is so adorable!

JaneW2 · January 2014

I am so sorry to hear that. Your daughter looks like a wonderful and beautiful lady. Feel free to vent here any time, and do go looking for CF parent support communities, I believe there are some very nice ones out there.

I am sympathetic to your struggles with getting family to understand the necessity of protecting her from germs. Hopefully they will "get it" soon.

precious72381 · January 2014

So sorry about the diagnosis and hope you get the support from both your family and medically that you need. Sorry it has been so tricky now.

She is absolutely adorable!!! Congrats!

LabPupLuv · January 2014

I'm so sorry to hear you are going through this. She is so precious!!!

Jules5611 · January 2014

So sorry to hear this. My brother has CF. He is 28. He is currently doing well but in and out of the hospital for cleaning outs several times a year. My I suggest that you get a DR that specializes in CF rather than just a normal pediatrician. As for you and your husband I would recommend counseling. This is something my parents have put off and I have watched them both shut down emotionally. Definitely stick to your guns about people being sick and refusing the flu shot visiting your baby. Good luck prayers to your family at this difficult time.

brideandbreve · January 2014

Your baby girl is absolutely beautiful. I'm so sorry to hear about her CF diagnosis. Lots of thoughts and prayers coming your way, though. ♥

slmille4 · January 2014

Hugs!!!!. I know it's tough. I do have a friend who is 25 with it and doing just fine besides the occasional flare up right now. I will be praying for you guys. I can't imagine hearing the news though.

angiek1 · January 2014

Oh gosh, sorry to hear about the diagnosis. I have a family friend with CF and he is 35 and married. I think @Jules5611had great advice. Prayers going out to your family as you process the news.

jhjocelyn · January 2014

Thanks, we'd ll be looking into support groups as soon as we know more. I may ask the pulmonary Dr monday about peds he recommends. There aren't a lot to choose from locally, but we don't mind travelling. Thankfully we aren't too far from the children's hospital with Boston as next step when needed.

daltosostarby · January 2014

She is beautiful! I'm so sorry about the diagnosis of CF. Feel free to vent anytime you need to. Sending good thoughts your way.

Jules5611 · January 2014

My brother sees DR Allen Lapey and has since he was finally diagnosed when he was 3 months old (this was back in the 80's when there wasn't enough info about CF). He is out of Mass General and specializes in CF. Here is his info

https://www.massgeneral.org/transplant/doctors/doctor.aspx?ID=16400

Good luck. Wishing you all the best.

kiki1978 · January 2014

I'm so sorry about the CF diagnosis. I hope you can find a good doctor who can help you manage it. Good luck!

jwp325 · January 2014

I'm so sorry for everything you're going through. I do know that Children's Hospital in Boston is amazing though. My brother and SIL spent a lot of time there this spring as my niece has Down Syndrome and they had many doctor visits post delivery and she had heart surgery at six weeks old.

Much like you and YH, they had to process through some grief over what they had imagined for their child during pregnancy and what her life would be like. It's completely ok to do that and I think important to help you move forward. I completely agree that support groups can be extremely helpful. My brother is part of a day's group and they've met many other families who have been very supportive and are making friends which is leading to play dates and interactions for my niece.

Hugs to you and your family. Your daughter is beautiful.

moosebaby2011 · January 2014

Congratulations on the birth of your beautiful DD. I'm sorry that she has such a tough road ahead of her, and will be thinking of you and your family.

FWIW, my BIL's nephew has CF and is about 10 years old. He's quite the athlete and is doing extremely well.

Jackapatamus · January 2014

Many prayers and hugs.

km_md · January 2014

I'm so sorry that you are going through this and you have family that is being less than supportive ((hugs)) This really is a great community though, so if you can stick around you will find lots of support here as you navigate your way through this.

sugarland726 · January 2014

Congratulations on the birth of your daughter! She is absolutely beautiful. I'm sorry for the diagnosis. I think you've gotten great advice here. Big hugs to you in your journey.

jhjocelyn · January 2014

Thanks @Jules5611 we're actually in western Maine.

susieandmarty · January 2014

I'm so so sorry to read this. Your daughter is so adorable.

MiaMyPuggle · January 2014

Stay strong as an individual and as a family. This is tough to hear as a parent, and even as an internet stranger, I feel terrible for you all. But, your faith will get you through. Think positively. You'll be OK.

Armyratt · January 2014

Congrats on your little girl she is beautiful! Be strong and I hope you find a doc you like!

bee1916 · January 2014

I am so very sorry to read about your daughter's diagnosis. You seem to have a very strong faith and I think that will get you and your husband far. I think there has been some great advice posted for you- I hope and pray that you find a pediatrician that can help you through this and that your families become a support system for you. Your daughter is beautiful- I will keep you all in my prayers!

growingmybun · January 2014

Congratulations on your beautiful daughter. I wish you all the best and hope that your families come around. People often don't know what to say in tough moments, so they say really stupid things even when they mean well. You can always vent to us... We love bad in law stories.

ababymaybe · January 2014

Congrats on baby- she's adorable. I'm so sorry to hear about her diagnosis. I wish your family all the best.

megs12914 · January 2014

I'm sorry you are going through this and my thoughts and prayers are with you and your family.

peanutmuse · January 2014

I am so sorry for your sad news and family issues. You will definitely find a lot of support and encouragement here.

Dishylo · January 2014

I'm so sorry to hear about your diagnosis, that must be incredibly difficult to go through.

I know very little about CF but I hope the best for you and your gorgeous little girl, whatever that may be.

I hope YH's family smarten up as well!!

[Deleted User] · January 2014

Congrats on the birth of your daughter. So sorry to hear about the diagnosis and I hope you find the right medical professionals to help you along the way. Sorry your families are being difficult. I hope everyone settles down in the next few weeks and educates themselves about it instead of pestering you and DH. Def take some time out for you and the family.

HeartOverMind · January 2014

Congrats on your beautiful little girl. I pray that you and your family find peace in this time of trouble and heartache. I don't kno much about cf, but the ladies here have given lots of encouraging stories of adults who are thriving with cf. I pray that your daughter will have that blessing of a full, happy life!

PreDempsey · January 2014

She's beautitul, congrats! Im so sorry for her diagnosis and hope your family can find a strong support in doctors who can help her have the fullest life.

mrsjenni · January 2014

Wishing you nothing but the best for your beautiful daughter.

joshsmandy · January 2014

Congrats on your daughter, she is so adorable!! I'm so sorry for your news but keep your chin up, your LO is a strong girl.

MindyBadger1 · January 2014

Congrats on the beautiful baby girl. Take time to process this and stick to your guns with the relatives. I think you're a strong woman/family and baby girl is lucky to have you just as you are to have her. xoxo. You can always vent here.

I'm a family practice PA and have seen a few patients with CF. If you ever want to talk feel free to PM me.

aessary03 · January 2014

I'm so sorry about your news

However, it doesn't mean you won't enjoy your daughter for many years to come. I went to school with 2 brother who had CF. I believe one is still living and one just passed away last year at the age of 32. There's hope for her to have a long life.

BIG hugs

megngregk · January 2014

So very sorry for her diagnosis. She is a beautiful girl.

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