Tuesday, April 29, 2014

Guest Blogger- Beth

We have another CF mommy-to-be to introduce today! Beth is from the blog, The Overdeeps, where she chronicles her pregnancy journey. She discussed everything from dealing with CFRD while pregnant to nursery preparations. She has tons of cute pictures too!

Everyone that has CF seems to have a very different experience. Share a little about your CF story or how CF affects you.
I was diagnosed when I was 4, after my sister and I had been sick for years. She was 6 at the time of our diagnoses. My lungs were in pretty decent shape but I suffered greatly from being pancreatic insufficient. 

I managed to stay relatively healthy and avoid the hospital until high school. I started culturing MRSA when I was 18 and saw my health really take a hit. It took moving to a new state & clinic to really gain motivation to kick my sick butt into gear and I managed to get my health back up.

I continued to improve, especially since starting Kalydeco. I'm now the healthiest I've been since I can remember (we're talking numbers I haven't seen since probably I was 10 or 12) which is a good thing, since I'm pregnant!

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to try to conceive.

I've always wanted children. From a small age I was always enthralled with babies. I started babysitting and nannying in high school, and I ran a few children programs out of the public library. I was just good at taking care of children, it was very natural for me. Having children of my own was not really an option in my mind; it was going to happen.

I met my husband in high school-- we started dating our freshman and sophomore years, but I dumped him a few times along the way and we ultimately got back together once we headed off to college. He was and is, my best friend. He always knew my strong desires to have a baby - but he is a very logical, sensible person and always reigned my "I want it now" madness in.

We had to compromise on our timelines. He wanted to graduate, get a PhD and work for a few years before having children -- with his timeline we were looking at early 30's. My timeline was "As soon as you graduate undergrad, knock me up!" Early twenties. Needless to say we both agreed that waiting so long was much riskier, but we needed to be very comfortable in a few areas before getting 'knocked up.'

We decided that once he had graduated undergrad and had a better idea of what our future held, we would talk about trying for babies. He ended up getting into a PHD program and I had our years mapped out to a T. That of course, never happens the way you plan, so my 1 year and then a baby plan turned into a 2.5 year plan. I worked as a nanny in the new city for 2 years and we saved every penny I earned. I concentrated on getting my health up, and with the help of Kalydeco I started seeing numbers I hadn't seen in over a decade. Things were looking good! In the end our decision to have children came down to a few major factors: 

  1. Would we be settled for the next couple of years in one spot? (Passing a PhD qualifying exam was the dealbreaker for this question. He passed, so we knew we would be in one spot for at least 3 more years).
  2. Did we have enough comfortably saved up to live off of for 3+ years while we cut our income from two down to one and upped our household from 2 to 3. -By saving my entire salary for 2 years, and being good savers from the start of our relationship, we felt we had a comfortable savings cushion to answer yes.
  3. Was my health in stable condition? I had gone the longest without needing IV's since we moved and since starting Kalydeco. I went 18 months. I was averaging 6-9 months previously. We decided that yes, with my lung function as high, my weight was stable and I was the strongest physically that I had been in years we thought my health was spot on to support a pregnancy. The doctors I see at clinic were fully supportive and had no concerns about my falling pregnant and carrying a pregnancy to term.
This led us to getting pregnant at 24, and we'll be parents at 25. Mid-twenties: compromise!

Trying to conceive can be a difficult journey for some CF women. How was your TTC journey?
Our trying to conceive journey involved me being absolutely crazy. I started preparing WAY before we threw the condoms away. We're talking years of prep. I focused on getting my lungs healthy, my weight up and putting on muscle mass.

Once we knew we could answer yes to all 3 major factors of having a baby, I started charting my cycle. I did temperature charts noting my cervical mucus and body signs. I was able to track my ovulation within a few days, give or take. The month we decided to go ahead and throw away the condoms I added even more craziness! I took Mucinex to help thin out my cervical mucus, I drank more water to also aid in the thinning of mucus (and just because it's better for you!). I bought some ovulation prediction kits and a bunch of pregnancy tests. I was in it for the long haul!

We had sex every other day after my period ended, and every day the week around ovulation. I ended up feeling sick shortly there after so we stopped having sex. We figured we maxed out our chances and I was certainly not in the mood.

I got all the signs of a lung infection (and hadn't had IV's in almost a year) so I scheduled a tune-up because I knew I couldn't wait. I was in the two week waiting period when you're not sure if you're pregnant or not.

I figured a tune-up now would be good if I was pregnant since I wasn't yet sharing a blood supply and baby wouldn't have hunkered into my uterus yet. Or, if we weren't pregnant I'd be in tip top shape for next month of trying!

I was giving a pregnancy test the first day I was there, only to have it be negative. We treated my infection as if I wasn't pregnant and decided if my period was late we'd retest and reevaluate based on those findings. Lo and behold my period due date came and went and my charting temperature still hadn't dropped. I demanded a blood test (they also did a urine test) and it came back positive!

After one cycle of TTC we were successful. To say my husband and I were surprised is an understatement. We both were mentally prepared for MONTHS of trying, and here we were a mere 3 weeks later... pregnant.

To summarize, I had quite the easy experience getting pregnant and I can't begin to tell you how thankful we are that it worked out the way it did. We contribute a lot of the ease with Kalydeco since it helped regulate my cycles and thin out my regular cervical mucus. My husband however, likes to brag that he's just got good swimmers. ;-)

I think being at peak health- for both of us, and at an age where you're naturally more fertile really helped tip the scales in our favor.

What were some of your biggest fears regarding pregnancy itself? So far have those fears been warranted? / What are some of the biggest challenges of pregnancy for you so far?
Some of my biggest fears for the pregnancy had to be my health issue. Was I going to get morning sickness and lose all the weight I had put on? Was my CFRD going to be crazy and get so complicated? Was I going to need IV's frequently, are there any IV's I can have? Can I stay on Kalydeco? What if my health drops drastically and I miscarry? Etc. ETc.

I think being pregnant for the first time you naturally have a lot of fears and concerns. I mean, come on they tell you not to eat deli meat and sleep on your back! And all sorts of crazy things!! Now add ontop of that the fact that you take 15 different medications to control your CF and you have an issue with diabetes already... The fears were plentiful.

I think excitement really took over and helped me through the first trimester. I had stopped working, which was great, because my biggest symptom was exhaustion. I slept almost all day and all night. I lost some weight since I had no energy to exercise, my muscle mass that I had worked so hard to pack on was slowly decreasing.

I also was newly pregnant in the start of the flu season! Talk about paranoia! I hardly left the house, and one fateful day, when I ventured out, I brought home the flu (even after getting my flu vaccine).

The flu really did me in. Luckily I was out of the first trimester at that point, so a lot of the drugs that aren't safe were usable. The flu festered into a lung infection and I've been sick ever since. I've had another round of IV's and just having come off them 2 weeks ago I'm starting to come down with another infection.

I think overall it's been easier than I anticipated, but in some ways harder. I wasn't prepared for something like catching the flu -- it could have happened to anyone-- and then having that turn into this long drawn out battle of infection. My blood sugars have been a bit of struggle to figure out and tame, but so far so good. I think the hardest part so far has been mentally. I'm mentally exhausted by over analyzing and worrying. "I haven't gained enough weight, maybe if I had done extra airway clearance I wouldn't be sick right now, I'm not eating enough, I'm not exercising enough, what if all my coughing causes early contractions, how am I going to handle a newborn when I'm SO SICK?!"

Having a great husband has been my saving grace. He talks me down, reassures me, and gives me countless backrubs.

So while my second trimester has had a lot of bumps along the way and may be harder than I anticipated, my first trimester was SO easy that I think we're averaging out to be about what we expected or even easier than expected.

I'm currently only 2/3 of the way done baking my baby, so you may have to check back with me once I've finished the journey!

How do you feel your pregnancy is different than a non-CF pregnancy?
I think my pregnancy is different than a normal pregnancy (thanks to CF) for the following reasons:

  1. Catching the flu turns into a massive infection!
  2. Being exhausted in the first trimester was much more damaging than I would anticipate a normal pregnancy just because we already use more energy just doing simple tasks, add in not exercising and it really affects your lungs and muscle tone which overall affects your general health.
  3. Diabetes is strange. I'm not following any sort of pattern; not CFRD not GD, just strangeness. My OB nutritionist and CF nutritionist work as a team so they've been amazing!
  4. APPOINTMENTS! My schedule is crazy filled with appointments.
  5. This last one may be controversial, but I feel very judged. I feel since falling pregnant (and now looking pregnant) I've been judged. By hospital staff to complete strangers, to even family. I think that was something unexpected and has been hard for me. I'm not sure how a normal pregnant woman would feel - I'm sure we all feel judged at one point "Why yes she did just order a regular coffee and she's pregnant! GASP" but I think having CF really amplifies those feelings for me.

What are your doctors doing to ensure a safe and healthy pregnancy?
My doctors are great. I see a high risk OB practice (who are SO much more relaxed than a regular OB) and I see my CF team regularly. In the first trimester since I wasn't having any problems I saw everyone at normal intervals.

Since catching the flu and then harboring a lung infection, I've seen everyone much more frequently. I'd say my CF team has been way more valuable than my OB team. In fact, I tend to call them first to see if it warrants a call to the OB. My clinic is pretty large (around 400-500 adults) so the fact that I feel like I get extremely personal care, even more so now that I'm pregnant is so reassuring. Now, if only they could deliver my baby too! haha

Overall, not many of my meds were stopped. I stopped a few things for the first trimester: pulmozyme, advair, flonase. We stopped an alternating month of TOBI, but continued all my other meds. Their philosophy is 'healthy mom, healthy baby.' So far it's been working well, baby is looking great and is right on track!

As I progress to the third trimester I'll see my OB clinic every 2 weeks, then every week, along with more frequent growth scans for baby. I'll see my CF team once a month and then every 2 weeks in the final two months. OR, if things get a little haywire I'll be seeing them as frequently as needed.

What are some of your concerns about mothering with CF?
Oh man, where to start! Concerns about mothering with CF. Being a nanny for so long (and working with plenty of newborns and infants) I know what's coming. Only this time, I won't be able to hand baby back and say "goodnight!" and go home to a baby free house. My main concern is sleep! As a CFer my mood and health truly depend on getting enough sleep. Infants and sleep don't really mix, so I'm most concerned with that.

On a larger, much longer timeline/scale I'm worried about how we'll handle hospital stays and getting sick. I'm nervous about taking care of someone other than myself on top of taking care of myself.... all the time! Our nearest family member is about 2 hours away and then the rest of our family lives about 7 hours away.

I'm nervous about not being able to provide adequate attention when I'm getting sick, and I'm afraid I'll be getting sick more frequently. And is it just me, or do we all get snappy and crabby when we're not feeling well? The thought of being snappy to my little girl is terrifying and something that constantly worries me.

Even though we did an amplified CF screening on my husband I'm terrified that our daughter will have CF. I'm not sure I could mentally deal with the fact that we were responsible for putting someone through a life that I wouldn't wish on my worst enemy- never mind our own child!

I have plenty more concerns but those seem to be the biggest ones so far for me: lack of sleep, running myself down, caring for someone while sick, and having a child with CF.

If you could give advice to a CF women TTC, what would it be?
My advice would be to plan, and talk! It's so key to be as prepared as you can, but also flexible in the fact that things don't always go to plan. I think talking is also very very important. Talking to your partner, your parents, your support system, your doctors... talk, talk, talk! The more information you have the less scary it seems. Good luck ladies (and men) it can be a daunting journey, but I'm sure the end result is so worth it. =) 

Beth gave birth to a healthy baby girl on June 18th weighing in at 6lbs 5 Oz.

Tuesday, April 22, 2014

My Other Mom

One trait (of many) I have passed on to my daughter is that she can be a tad (ton?) bossy. I figure she will make a great teacher or leader someday and will thank me for giving her this take charge personality. My husband just rolls his eyes, poor guy has two bossy take charge women in the house now! 

Lately, HTS has been irritating my lungs a little. I normally do HTS and my Vest at the same time, but I have been needing to take short breaks from HTS while Vesting just to let my lungs calm down a little. My daughter, who has watched me do treatments her entire life, has noticed this little change in my routine. Whenever she catches me stopping my nebulizer to let my lungs calm down she comes running over to me, grabs the neb cup and shoves it to my face saying, "In, mama!!" 

She sure is strict about me doing my treatments and she won't take any excuses! A resident at clinic once said she couldn't imagine doing all the treatments I do while caring for a toddler (her daughter was a few months younger than K). I could only laugh, she doesn't know my daughter!!!

Friday, April 18, 2014

Hope Vs Denial

This past year has been brutal and I seem to get knocked down over and over just as I am getting up from my last blow. It seems every time I start to get better I know for sure that this time, yes this time, I am finally getting back to my old self. I am positive that my health is turning around and this crazy year of sickness will be behind me, a distant and horrible memory. And then. And then I find myself sick, in pain, and feeling hopeless all over again

Since getting the flu last February I was hopeful I would bounce back. Why wouldn't I have been, I always bounce back. A quick dose of orals or a few weeks of IVs always brings me back to my old energetic self. And yet, this time I didn't bounce back. It has been over a year and I have yet to get my lung function and weight back, and I get sick so frequently I wonder where my wonder woman immune system ran off to. I have never had a CF flare up knock me off my feet before. I have never known this side of the disease before. I have heard of people with CF getting hit so hard they can't recover, but that just wasn't me, that wasn't my CF. I always bounce back, right? Right?

This realization that sometimes CF doesn't allow you to bounce back and sometimes it does get the best of you makes me wonder where do you draw the line between being hopeful and being in denial? At what point do you admit your body is tired and weak and that CF is starting to get the best of your life? When is it time to make plans for the future that may or may not include you? When do you ignore your fears and stay strong telling yourself that one day you will be healthy again? How many times can you take the disappointment of believing things will turn around and they don't?

I seem to be stuck bouncing around between denial and hope. I have days I feel hopeless and lost and as if this disease has already taken the best of me. I have days that I think we just need to find the silver bullet, that the answer is out there we just haven't found the right combination to get my health back.

I don't want to live in denial, but I just cant accept this as my fate, yet. I know CF is progressive and I know where this journey will take me, eventually. But oh I am so not ready to believe I am there yet. So maybe this is denial at its finest, but I will keep fighting and trying and hoping that tomorrow may bring a little bit of good news and that tomorrows will keep coming.

Sunday, April 13, 2014

Guest Blogger- Shannon

It has been a while since we have had a mommy interview so I am really excited to introduce our newest CF mother, Shannon! Shannon is from the blog, CF Happens which details her life as a wife, as a future author, a CF fighter, and a bonus mom to teenagers! I may some tips from her in about 12 years!!

Everyone that has CF seems to have a very different experience. Share a little but about your CF story or how CF affects you.  
I was diagnosed at 5 months old.  I didn't start needing IVs, "tune-ups" and hospital stays until I was 13 years old.  I am on IVs about 3-5 times a year.  Some years are better than others.  I have am very stubborn so that helps me push through at times.  My motto is "never give up."  I don't want to fail and let CF win so I push the limits.  I want to do all that I can right now because I know there will come a time that I am unable to do them.  I don't want to say "I wished I did_____."  I would rather say, "I did the best I could and got to experience a lot."

Tell me a little about the term bonus mom you use to describe your role as a parent.
We came up with the term bonus mom because step mom's in all the stories and movies are usually evil and mean and I am not.  We said bonus because that is what I am in the kids life, a bonus to the 2 parents they already have.

Tell us a little about your bonus kids and family dynamics.
My bonus kids are great!  I love them as though I gave birth to them.  I would do anything for them.  We have 1 graduating high school next month and going off to the college and going into theater which she loves very much.  Our youngest is turning 14 next month and going into 9th grade next school year.  He loves sports, anything sports.  Our family flows well as a whole unit.  We each have our roles and jobs to make it run smooth.  We have taught our kids that you have to do your part in the family to contribute, it is not all 1 persons job to take care of the house while the others do nothing.  We try our best to teach life lessons whenever possible because we want them to be able to survive in the real world when they are out of our house.  We are a team, no one is left alone. 

Falling in love and starting a new life with someone is a big change! Add kids to the mix and it is even more complicated. How was the adjustment going from single to an instant family of 4?
My husband and I grew up in the same town and went  to the same school.  We have known each other for 15+ years.  We both married other people, got divorced and reconnected after many years via Myspace of all places. haha  He was in Korea at the time, he is in the Air Force.  When talked while he was there and when he got home we went on a date and that was the beginning of forever!  I didn't meet the kids for a few months and when I did, I was dad's "friend" not girlfriend.  We were very respectful of the kids because it is hard enough when your parents are divorced but when one of your parents starts dating it can be devastating.  We slowly did things as a group with the kids as friends.  We didn't want to throw me in their life if we didn't know if it was forever or not.  Once we knew my husband asked the kids for their thoughts on us being boyfriend/girlfriend before we made it official.  They were fine with it so then it was official.  We were very careful when it came to the kids.  I always wanted to be a mom but I didn't know it was going to come this way.  I am very thankful and blessed for these kids.  I have been around kids all my life so going from single to family of 4 wasn't that big of an adjustment except for learning where I fit.  I am not their mom and never will be but I am their step/bonus mom and I take that very seriously and am very proud of that.  We just had to find the balance from when the kids were with us and when they were with their mom.  We have a good system after all these years.  It has been 7 years that I have been in their life.  I am very blessed that I get to be a part of raising them to be loving, caring, law abiding, thriving adults.

How did you explain CF to your bonus kids? How did they take it?
We explained CF to them this... I cough a lot, that's just what I do.  I have to go into the hospital sometimes and do medicine at home to make me better because the pills and liquid like you take don't work.  I have to do breathing treatments to help me breathe good.  It didn't even phase them.  They liked sitting next to me while I did my vest so they could fell the vest.  They liked to help me get my stuff ready for treatments and IVs.  Now that they are older they don't even notice or think about it.  When their friends come over and I'm doing a treatment my bonus son will say, "oh she has CF, she has to do these to help her, it's nothing big."  He then is on his way to play x-box or outside to play.

As the kids got older did your discussions of CF change? Do they share concerns or worries surrounding the severity of CF?  
We don't really talk about it, but they know that they can talk about it whenever they want.  As they got older it has become just like washing the dishes, it's something I/you have to do.  We have had some heart to hearts about CF and what it means.  They know that I am here and not going anywhere for a long while.  They know that it will get worse as I get older.  My bonus son told me once that I couldn't die until he got married and that he will never get married.  Well played child, well played.  We are a very open family and talk about anything so whenever fears or concerns come up they ask or talk about it.

Does CF ever seem to get in the way of your role as bonus mom? If so, how?  
It does when I am in the hospital and can't do the normal running around that I do for them.  I hate being in the hospital and missing life with them.  There are times when I am at home on IVs and not feeling well that I have to take more breaks and am not able to do as much.  They know that physical things are limited because I start coughing and get out of breath and have to stop.  With that said, I usually push the limits and do more than I maybe should because I don't want to miss out on anything.

In the book you are writing you talk about getting your tubes tied so you will not have any children of your own. What made you decide to take this step?  
We chose to get my tubes tied because my lung function was not what it used to be.  If I were to get pregnant it would possibly take a toll on my body that I may not be able to bounce back from.  I tried getting pregnant with my ex husband and it didn't take.  If I had gotten pregnant when I was younger it would have been a different story.  We just made the choice to hopefully avoid any problems in the future.  Once I had my bonus kids I was happy.  Of course I have second guessed my decision and thought that I could have done it, which I probably could, but we didn't want to risk it.  We talked about adoption, but decided that we are very happy and content with our 2.

What would your advice be to other CF moms or dads that are about to embark on the journey of being a bonus parent?  
My advice would be to take it slow and integrate the kids slowly or integrate yourself slowly.  It can be a scary adventure but it is very much worth it.  Maybe I am spoiled in the sense that my bonus kids and myself get along great and there is no hate.  It could be like you see in the movies where the step parent hates the children or the children hate the step parent and they make each others lives miserable.  Luckily that is not the case for us and I am so thankful for that.  Kids aren't dumb they know more than we give them credit for.  They know when mom or dad have a new "friend."  Just speak to them with respect to show them how they need to respect you.  Respect is a 2 way road even with kids and parents.  I would say jump in and love the journey.  There will defiantly be bumps in the road and lots of ups and downs but it is worth being able to love a child and for them to have another loving parent.  There is never too many people to love a child if you ask me.

To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com

Saturday, April 12, 2014

22 Months

Dear Cake-A-Lake,
I had no idea when you were growing in my belly I would give birth to smaller version of myself. You may look more like your daddy, but your personality is all mine. So often your Nana will look at me and say, "If you ever wonder what you were like as a kid...there you are!" Your obsessive love of snuggles, the way you successfully boss all your friends around, your over dramatic expressions, your willingness to stand up for yourself, your mothering ways with your little cousin, the way you yell when frustrated, the way a good hug fixes all your problems, yes, these are all the little things that you got from me! Love it or hate it you can totally blame it all on me!

Things You Like: You love being outside as much as humanly possible (you got that from me too). You love working in the garden, taking walks (especially now that we are seeing baby ducks along the river), watering the flowers, you just love being outside.

You also love your little cousin with all yoru heart. You love to baby him and cover him with kisses. You spend huge portions of your day talking about him or pretending to be him. I love that you have one another and hope you always stay close.

Things You Like: Naps, especially since i think you gave them up for good. I am less than pleased with this lack of nap situation, but little girl you are always growing u way too quickly and I guess I should have seen this coming too!

Words: Oh my goodness, I sure gave birth to a girl! You talk allllll day long! We went to breakfast the other day, just you and me kid and you talked the entire hour we were out. I mean talked nonstop! I love hearing what you have to say and the thoughts going through your mind.

Tuesday, April 8, 2014

UCSF and Stanford

Any CFers (non transplant) out in the bloggy world go to UCSF or Stanford?? I need your help!! Please e-mail me: InhalingHopeCF@gmail (dot) com

Tuesday, April 1, 2014

We Have Weaned!!

20 months of nursing. 29 months of my body giving of itself to grow and then nourish and comfort my baby. To say I am proud of my nursing journey is an understatement considering my doctors warned me over and over that due to my CF there was a good chance I would not be able to nurse at all. I could lose too much weight, I could get too tired, I could get sick and needs meds deemed unsafe for nursing. And yet, Kay and I made it to 20 whole months!

I am no expert and every kid is different, but I wanted to share how I weaned because it is probably the most bizarre story you have ever heard.

I was slowly weaning over the course of several months since I wanted it to be as easy on Kay as possible. With that being said, by the time we were down to one feeding I was ready. After over 2 years of giving so much of myself to K through pregnancy and nursing I needed my body back. With my health issues I needed time to focus on my own body and Kay was old enough that her body no longer needed mine.

We got down to one feeding just as she woke up. I was her morning coffee. I loved these feedings because I was able to snuggle, doze off, and enjoy a lazy early morning while waiting for the sun to rise. Despite my own enjoyment for these slow lazy wake ups I knew that these feedings were a habit for K and no longer a necessity.

I think she knew it was time to wean, too. I started trying to distract her soon after latching on and it would work some of the time and other times she completely refused to be swayed from her long snuggles and nursing. Then one day she figured out a way to let go of nursing and leave that chapter behind us.

Let me first explain something, K has this obsession with her feet. It is seriously cute (and strange). She makes them talk, do breathing treatments (complete with fake spitting and patting them on the "back"), she makes them do silly things like read books, play with toys, and have conversations. Kids are weird and K is no exception!!

So one day Kay asked if her dedos (toes in Spanish) could nurse. In my sleepy state I agreed and Kay held her feet to my chest, we counted to five, and then she jumped off my lap and went to play. I was left in the rocking chair a little perplexed at what had just happened. My little Kay just nursed her feet and then seemed satisfied. Was this the key to weaning??

Although she ended up nursing a few more times in the next few weeks, the majority of the time she would ask to let her feet nurse and then move on. We weaned (both Kay and her feet) for a few weeks now and although she sometimes asks when she first wakes up and is sleepy she seems perfectly content with our new no-nursing relationship. I miss it at times, but know in my heart that both K and I were ready for the next chapter of our lives which does not include nursing.

You won't find this advice in a book and I am not sure any other kid would be satisfied with nursing their feet, but my little Kay found her own way to say goodbye to nursing and that is more than okay with me!