Wednesday, January 28, 2009

And so it sinks in

First before I continue, I want to thank all the new readers that have found me. I'm so glad I have a network and CF community. All of the comments are encouraging and helpful. I found several blogs through googling info last night on CF. You all have some wonderful blogs.

So, things are starting to sink in more now. I'm somewhat in the "am I dreaming stage." Maybe they messed up in the lab, and it's not really true. Ok, denial, just a little. But nevertheless, I can't let the denial prevent me from preparing for my little Beanie Bear. She will be here in no more than 10wks, and will need her mommy to be ready for her. So denial, leave, I've got too much to do.

Questions are flooding my mind. So many that, well I don't even know what to ask. Maybe I need to keep a notebook and pen by my side so when a question pops in my head I can immediately write it down. I do feel very blessed that I was able to find out before she's born. I'm so glad that went ahead with the amnio. Very smart decision. And yes, I'm still able to enjoy my pregnancy without worrying too much. I'm hoping we will have more children. I've never seen myself with one child, or even 2. I knew that if we had 4, then chances are 1 would have CF. With this logic, then the next 3 shouldn't have it, right. It's still scary to think about having 2 or 3 or even 4 with CF. But, we've always wanted a big family, and I'm not letting go of that dream. (Never mind my endometriosis and PCOS that made it difficult to get pregnant in the first place).

So a couple questions I can ask, because I can think a little right now. Will I still be able to breast feed my little Ellie? Will she have to have high calorie supplement formula? If I can breast feed, is there anything special I have to do? If Ellie wants to play sports, can she? Are there certain things she shouldn't do? Will she for sure be sent to NICU? Do all children with CF have to have surgeries? Will Ellie for sure be allergic scents like soaps and air fresheners?
That's all for now, I have a few more questions, but I can hold off on those.

Again thank you all for the kind words and encouragement. I know that we will be ok on this journey.


Carrie said...

I will try and answer some of your questions. Just remember these answers are based only on my own experience.
1. Will you be able to breastfeed? I gave Sawyer breastmilk but mostly I pumped it and put it in a bottle so that I could add extra calories to it. I did this for about 4 months and then put him on a higher calorie formula. I did breastfeed him some though just for the bonding experience.
2. Will she be able to play sports? Sawyer is fixing to start playing baseball in a few months. He has also done gymnastics. He has done great and exercise is actually good for the lungs. He loves to jump on the trampoline.
3. Anything she should not do? The only thing I can think of is be around people that you know are sick and of course no being around other cf'ers.
4. Do all cf babies go to the NICU? I don't think so...just depends on the problems (if any) that are present at birth. Although since they know that she has cf they may take her to the NICU at first just to observe her.
5. Do all have to have surgery? Absolutely not!! Only if meconium ileus is present at birth and she is not able to pass it on her own.
6. Allergic to scents? Sawyer is not allergic to scents. Although I try to keep from spraying anything around him and I don't use candles. That is just because I don't want him to breathe it.
Hope that helps some!

ssbean said...

That helped a lot. I'm so glad that I wont have to put her in a bubble. Not being around anybody sick scares me a little. I had to have my spleen removed a few years ago because it ruptured. I am susceptible to colds and stuff myself. I guess this is where prayer comes in.

Elana Kahn said...

I don't know if this is something you would consider, but you can go for IVF w/ PGD for your future children. That way you can be guaranteed a non-CF baby. I know it feels like "playing G-d," but it is an option. Especially since you don't know what quality (and length) of life a CF baby will have.

ssbean said...

Oh, wow Elana, that surely is an option. It's hard to say what the future hold for my family, and I definitely can't decide one way or another at this point.

Coco said...

I don't know anything about CF but I did want to tell you that I am praying for you, Ellie, and your hubby! Remember that God never gives us more than we can handle!

Caroline said...

Hi Sherry! I wanted you to know that I found you :) I have no idea how to follow your blog, though :(

I will leave comments more later on when I have gotten a chance to read through your posts and when I've been able to do a little research on CF so I understand more about what you are going through!

Know that I am and have been praying for you and for your little bean :)

Anonymous said...

Hello! I found your blog through Lil' Chris. This is an amazing group of people here to support and help you with whatever you need. My son was suspected of CF at 2 days old and they started treating him. I did breastfeed for awhile and would add calories to pumped milk about every other bottle.
Phoenix has struggle with his CF, but we always looked at it as treat him like any other child. Give him the same expectations and dreams as you would a child without CF. Yes, do extra hand washing and keep sanitizer around. Every Cf child is different as you will see from the more blogs you read.
Another CF mom told me, God makes no mistakes.
Live life in the moment, enjoy your pregnancy and your baby. God gave you an amazing gift. I think sometimes he sees things in us that we do not see in ourselves. The road ahead will be filled with bumps and curves but remember we are all here if you need us.
You can e-mail me if you ever want to talk:


Carolyn said...

Hi, Congratulations on your daughter!! I love little babies!! We have 3 kids. 2 boys and 1 girl. Both my sons have cf. My oldest son had to have surgery at birth because of a blockage and my second son did not have to have surgery. He did not have to go to the NICU but my son that had to have surgery did. I did breast feed my second son (I didn't get to with my first son since he had a blockage) and I had to give him one enzyme before he started to eat and he gained weight fine.

CFers are encouraged to exercise, exercise, exercise!! That is one of the best things for their lungs! Dr Warwick in Minneasota who has the top cf clinic in the US told us if they are not feel well the best thing is to drag them on a walk or make them run, jump on a trampoline, ect.

As far as # goes for future children with cf I know one lady who has 5 kids and all 5 kids have cf. I know another lady who has 4 kids and all 4 have cf. But I also know people with 3 or 4 kids and they only have one child with cf. So it is a crap shoot I guess. I didn't think we would have anymore kids with cf but we had another son with it. Both their symptoms are totally different too. My older son has more gut issues and my younger son has more lung issues.

I will just say my kids have been such blessings to me and my husband!! They truly have taught me the meaning of life! They go through so much but always come out of it smiling! I always practice that lesson cause if they can go what they go through and come out smiling then I can smile too! Congrats again!!

The Liberto Family said...

I'm a CF Mom who is here for you. I found you through my new friend Lil Chris.
I only have one daughter, but we are hoping for a baby brother or sister for her soon.

I breastfeed my daughter and she was getting enough calories from that. It was amazing how much weight she gain when she was put on the enzymes.
Melissa didn't have any major problems at birth so she didn't have to be in NICU. She got to go home with us. She was 2 weeks old when we got her test back. The first two weeks she was under weight.

Every CF'r is different. We have been blessed that Melissa is doing so well. We do have to keep her away from sick people. It's really hard during the winter months and cold and flu season.

Please feel free to check out our blog @

Christy said...

Hi Sherry,

My name is Christy and I have two girls Mackenzie (11) and Peyton (8). Mackenzie has CF - diagnosed with CF at four days.

I see you are getting a lot of answers to your questions, and I just wanted to add mine too.

Breastfeeding - at the time I was discouraged from breasfeeding (due to caloric intake), I joke that had they said jump off a bridge I would have and I regret that I didn't. Or atleast nurse/pump AND supplement. Especially later when a study came out about the oils in breast milk being so beneficial to CF patients (of course).

Sports - Mackenzie has participated in (and excelled in some cases) in soccer, gymnastics, cheerleading, dance - ballet & hip hop, and softball. Her doctor stresses the benefits of physical activity.

I can't think of anything we've not let Mackenzie do.

Mackenzie had a bowel obstruction that cleared itself w/o surgery. She did have a small non-CF related surgery on a hernia.

Mackenzie is not allergic nor does she avoid soaps, etc. with scents.

I hope I've helped some. Please visit my blog and take a look at Mackenzie. That was one of the things that helped me the most...meeting or hearing about other productive, smart, brave, (I could go on and on) CF patients.

I promise, you will find postive things to come out of living with CF. I say it all the time - of course I would rather my daughter NOT have CF BUT we are blessed to experience unbelievable support from friends and family, we get to see our daughter in situations where she is very brave and we have even more to be proud of, and of course we've learned to really appreciate every day.

A notebook and pen by your side is a great idea as you will probably have a million more questions and as you see - a million different answers. CF varies so much from patient to patient and yet there is so much they have in common.


Julie said...

Hi Sherry-

I don't have much else to add. Other the other CF moms answered just like I would.

I breastfed Seamus but supplemented with formula. He was in the NICU with meconium ileus but passed it himself on day 10 so no surgery was needed.

He loves to play any sport. Exercise is so great for them. He can do anything other kids do.

The biggest thing, like others have said, is to just try to keep Ellie away from germs and illness but she won't live in a bubble, and you don't want her to.

She'll get sick sometimes but there are lots of good treatments out there and more coming every day.

Take care and if you have any more questions, you know we're all here to help.

Jessie said...

I know this is not the news you wanted but I hope you know how luck you are to have had your daughter diagnosed this early. My daughter Breezy is 4 and was diagnosed September 2008. As a result of her late diagnosis she has had untreated problems for the last 4 years that have showen to be difficult to deal with at this stage.

Breezy was never in the NICU and I breastfeed.Now Breezy is in gymnastics and loves to swim, run and play.And has no allergy to sent at all.

65-roses said...

Yes, your little girl can play sport. In fact, it's encouraged, as exercise means a better lung function.
I agree with what Carrie said, try and stay away from those who are sick and otehr CFers. The last thing she needs is a chest infecion or bug. (I learnt this the hard way).
She shouldn't be alergic to smells and soaps and such, although thats different with everyone.
Surgery is all relative. It depends what for. Don't stress about this.
Obviously high calorie intake is important throughtout life, but there are special drinks and stuff around, you'll probably be told about this when shes here.
Feel completely free to email me (my email is on my blog) as I have CF and obviously may be able to answer some questions. Nothing like a first hand account ey?! Xx

Katey said...

I'm not allergice to any scents..or anything for that matter.

LOTS of CF patients play sports...from baseball to cheerleading and gymnastics!

Not all CF's have just depends on what the babie's needs are and the severity of the CF.

I like this post! I definitely want a big family too. And if my husband is a CF carrier...that won't stop me from trying to have kids naturally if possible. If God decides to bless me with CF kids...then so be it!! CF babies are miracle babies!!

Alicia said...

Everyone answered your questions exactly how I would, so I'll just say ditto on that!

But I do want to encourage your instinct to keep an ongoing list of questions. By the time your baby is born it should be quite long, and your CF doctor and/or dietitian will be a great resource. Of course you can ask all of us, too (no one has told you anything wrong), but don't be shy to ask your CF care team. That's how YOU become the expert!

Samantha said...

Sherry I just wanted to give you BIG hugs. I dont know anything about CF really but I know that you will need support. Just let me know if you need ANYTHING!