Breastfeeding and Cystic Fibrosis

This post is simply to share my own opinions and experience with breastfeeding a CF baby (backed with a little research). I want to caveat by saying that I am not a registered lactation consultant or a registered dietitian. 

I also know that breastfeeding can be a very polarizing topic among mommas. And while I am a very strong BFing advocate, I absolutely respect every woman's choice on whether they BF or not and for how long. BF is hard. It is a commitment and 1,000 different factors can play into whether a woman chooses to BF, is able to BF and how long they BF. This post isn't intended to offend anyone or make anyone feel guilty.

I do believe that breastfeeding is the more difficult road to take. It's a commitment and it's hard, frustrating and time consuming. This is true even for a normal, healthy infant. When you add CF into the mix, there are additional challenges. In the beginning, Crosby was hungry ALL. THE. TIME. If I do the math, he was demanding to eat every one and half to two hours. Feedings usually lasted 45 minutes to an hour. So if I fed him at noon, he would eat until 12:45 or 1:00 and then be hungry again at 1:30. We were both exhausted. Crosby was exhausted because his hunger prevented him from sleeping! I was exhausted because I was nursing him more than 12 hours a day. 

I was nursing nursing nursing and he was pooping pooping pooping. Everyone kept saying that breastfed babies poop more but Crosby had about 10 dirties a day and also wasn't gaining much weight. And he cried and cried and cried (Momma cried some too.) My days and nights consisted of nursing him in our recliner or nursing him in our bed. Lance would often feed me dinner while I nursed the baby. And taking a shower?Fugeddaboutit. Of course I turned to self-blame. I thought it was me, I wasn't doing it right or producing enough milk. Something didn't feel right, but I didn't know what.

Tiny Crosby, nursing around 3 weeks old.

Fast forward to his diagnosis. Then we got the enzymes. Life changer! Crosby started only eating 8 to 9 times a day and the dirty diapers slowed way down. Turns out I was producing PLENTY of milk. We were both able to finally get some rest. I'm so glad that I kept nursing through that extremely difficult time. I never gave up. And believe me, I wanted to! Now, 7.5 months in, I really and truly believe that his good health can be partially attributed to my breastfeeding commitment. I couldn't have done it without the support of Lance, my awesome lactation consultant at Baptist, and two friends who have no idea how much their texts of encouragement helped.

Crosby nursing around 2 months old.

Everyone has heard of all the good BF does for babies in general, but breastfeeding the child with CF is even more of a tremendous benefit with numerous advantages. Here's a list, to name a few {*compiled and modified from the cff.org website, cysticlife.org, and Utah Valley Institute of Cystic Fibrosis independent research}:

• Breastmilk contains its own lipase. That is, breastmilk actually contains its own enzymes designed to break down fat. {Which because of Crosby's digestion issues, he doesn't produce enough enzymes (liapse being one) and needs all the extra he can get.} 

• Breastmilk has been shown to lessen the incidence and severity of respiratory and gastrointestinal infections, it has anti-inflammatory properties that help prevent allergic reactions, and it has antibacterial and antiviral properties. 

• Breastmilk contains vitamins and minerals in maximally absorbable form, and is also very high in antioxidants and DHA {substances deficient in CF patients}. Because CF babies are at great risk for malnutrition because their bodies do not readily absorb nutrients from their food, this property of breastmilk becomes very important.

• Breastmilk also promotes the formation of healthy intestinal (gut) flora, which is essential to good digestion and the manufacture of vitamin K. {Crosby takes supplemental vitamin K because it's a fat-soluble vitamin that he has trouble digesting and needs all the extra he can get.}

• Because it is so easily digestible, breastmilk also does not form large curds in the gut, as artificial formulas are prone to do. This property allows for easy passage of the breastmilk through the gut, lessening the chance of bowel blockage which is otherwise common in CF.

• Children with CF may often be on antibiotics. Breastfeeding helps reestablish the healthy gut environment that is disrupted by the antibiotics. 

• Breastmilk contains immune factors that allow the mother's immune system to govern the infant's immune system until the baby's system is fully developed. In normal babies, this translates into significantly less illness in those babies that have been breastfed. Recent figures indicate that breastfed infants experience 1/5 the incidence of respiratory illness, 1/4 the incidence of gastrointestinal illness, and 1/25 the chance of dying from these illnesses as infants that are fed artificial formula. Though there are no figures directly comparing the illnesses of breastfed CF babies versus CF babies that drink formula, it is assumed that the immuno-protective effects are similar. 

One thing that I found frustrating was the lack of resources. Mommas of CF babies need help with the management of breastfeeding. I know I did. Breastfeeding is overwhelming in of itself but with CF, meeting the demands of quantity and fat content can be extremely challenging. I didn't really get much BF-supportive advice from Crosby's CF team. Their take was 'do what you think is best and give up if you have to.' Clearly they didn't take into account my determination! The lactation consultant a Baptist (La Leche League) was the most helpful. I think it's important to have BF advocate who can foster an attitude of hope - such a priceless gift to any mother of a newly diagnosed baby.

If I had to give a CF momma wanting to nurse advice, it would be:

• Don't give up on your worst day. 
• Drink lots of water, gatorade, and juice. Mostly water. I try to drink at least half my body weight in liquid ounces a day.
• Cut out low-calorie crap. You need to eat fat to ensure your milk has enough fat in it for baby. I don't gorge on McDonalds or junk but I do use whole or 2% milk, eat ice cream and don't cut the fat off my meat. {In case you're worried, I also eat plenty of fresh fruit, vegetables and take supplements.) I burn about 500 calories a day just breastfeeding, so I need to replace those with good food. Even more on days that we run.
• Have a good support system - your partner, your mom. Also, don't be afraid to hurt feelings if you need space and have to limit visitors. Your comfort is important in the early stages of establishing your nursing relationship and really important for your supply. 
• If you are having supply issues, there are lots and lots of things you can do. I highly suggest calling a Le Leche League consultant. They are BF experts and many have experience advising Mommas of special needs babies. There are so many ways to increase your supply and these ladies are there to help. Many of them are over-eager to help you, but in a good way. You need a cheerleader.
• Don't be too hard on yourself. Do your damnedest but don't rule out supplementation. I didn't have to, but knowing that I would forgive myself if we had to give him formula, took some of the pressure off.

Crosby is still exclusively BF! I had to return to work when he was 8 weeks old (frowny face) and I have to pump frequently everyday to keep up my supply. We nurse at night and in the mornings. He gets bottles of breastmilk during the day. I love to nurse him but I hate to pump! It can be downright awkward at work or when I do it in my car while driving to work {I speed past those semi-trucks and pray my tinted windows serve me well!} It's a hassle to plan my work day or weekends around a pumping schedule. Every time that I feel like I want to give up, I remind myself of the benefits for him. I have this extremely small window of opportunity to provide something to my baby that no one else can give him and something that could benefit him by affecting his health in a positive way, for the rest of his life. He's worth it.

Happy (although not a fan of the camera) Little Dude.

His happy place is in his wrap, strapped to Momma - cure for the fussies.

Nursed to Sleep, 2 weeks ago. Check out those eyelashes!

Love,

Carmen

Crosby @ 7 Months

Dear Crozzie Bear:

Here you are at 7 months!

A lot has happened this past month.

You cut your first tooth! Miss Kelli was the first to notice it under your gums. You had a couple of fussy nights and days but after it popped through, you're all smiles again. Daddy just noticed tooth #2 yesterday.

You started eating baby food! So far you have tried green peas, green beans, zucchini, carrots, bananas, avocado, and sweet potatoes. I make all your baby food myself and bananas and sweet potatoes seem to be your favorites. You are such a good eater and I guess I shouldn't be surprised because after all, you've been eating applesauce since you were 3 weeks old!

You have started sleeping so much better at night (except for a couple of painful tights of teething). Daddy and I are no longer walking zombies and we give you a fist bump for your progress. Now we just have to work on those naps...

You've started stringing your syllables together when you talk. We hear "babababababa" all the time. I love hearing your little baby voice.

You've graduated from bathing in the sink to bathing in your ducky in the tub. You LOVE to splash and have the best time. I can't wait to take you swimming. 

You're getting more and more independent but still like to have Momma close by for a squeeze.

You and that pretty girl, Gray!

We love you, Crosby. So happy you are ours!

Love,

Momma and Daddy

Don't Take it for Granted

Crosby sees his CF Pulmonary Team every month at ACH. Among other things, we get cough cultures and lung checks to see how things are going. Lance and I hold our breath each time before we get the results and breathe a sigh of relief when we get the call saying, no change. We are steadfast in his treatments and do everything we can to keep him as healthy as possible. His daily treatments and medications are just part of our normal. As we get caught up in regular life as new parents with introducing baby food, sleep deprivation, teething, playing and sweet snuggles, sometimes, it's easy to forget that he even has CF.

But, the reality is that he has a life-threatening, life-shortening, incurable, debilitating disease. I never want to take his health for granted. Lance and I do a victory dance EVERY month when we get a healthy report. And then we hold our breath again until our next visit...

That got me to thinking. I am able post positive updates on this blog. When people ask how is Crosby doing?, I praise God that I can answer he's good. I share photos of a chubby, healthy looking {adorable!} baby boy who is growing and happy. While I hope everyone rejoices in our victories thus far, I never want anyone, including Lance or I, to take it for granted that he does have a very horrible disease. I don't want someone to see Crosby and think, well, CF must not be that bad. Because it is that bad. He's healthy now, but we don't know what the future holds. And, there are many children with CF who struggle greatly.

I'm posting this video below. While it may be hard to watch, I think it's important to see another story of a family with a CF baby. 

Want to make a difference in the lives of those with Cystic Fibrosis?

Donate to the Cystic Fibrosis Foundation. 

I want a CURE for Cystic Fibrosis. I want a cure for Crosby, baby Lily in the video and the thousands that suffer from this disease, struggling daily just to breath. The CFFoundation continues to make advances, but your help is needed NOW to help keep up the momentum of this life-saving research. 

In the last twenty years, there has been remarkable progress, but it's not good enough. We continue to lose precious lives to CF every day.

Help me add tomorrows, Donate today. (CLICK HERE) and click “Donate” by my name at the bottom of the page or join our team. 

Thank you so much for supporting our efforts to make CF stand for Cure Found.

Here's another video. This one is all about Great Strides. I really hope to see you there on May 17th!!!

Love,

Carmen and Lance

Tubby

Remember the movie Major Payne? There was a chubby kid in the ROTC and Damon Wayans' character punishes him by making him do sit-ups. Obviously the kid struggles because of his belly and each time he makes it in the "up position", Daman Wayans counts out: One Tubby Tubby... Two Tubby Tubby...

Hysterical!

I reference pop culture frequently on here don't I?

Crosby's weight is great. He is a great nurser/eater and I plan on posting soon about what I think has contributed to that. CF babies can really struggle with weight gain with all the digestion problems caused by pancreatic insufficiency. So, while most parents delight in the wonderful little rolls on their babies that make them so cute, Crosby's rolls provide a double source of thrill for us! We are hopeful that this healthy chub on Crozzie is here to stay.

Here are some recent pics via my iPhone that demonstrate his Delicious Tubbiness:

Happy Weekend!

Love,

Carmen

He never liked April Fools' anyway

April 1st.

It's been one year. One year since the worst day of my life. One year ago today I lost my Dad. Something about the one year mark really hurts. Missing your Dad for full year feels like an eternity. It feels really long to say my dad died 1 year ago because the hurt is still so fresh. But it's been one year since I've seen his face. It's been one year since I held his hand. It's been one year since I heard his voice. My God, I miss him.

Why is it that anniversaries are so much harder than other days?

There is nothing particularly different about today, the anniversary of his death. I guess it's just a reminder that life is moving on and that we are further removed from that person.

And my heart? I literally have felt it breaking. I didn't know that was possible but my heart was physically breaking and I could FEEL it. 

I remember everyone telling me that "it gets easier." Not true. Total B.S!!! Because in my darkest, quietest moments, I still miss him just as bad as I did that first week. Grief does not improve as life goes on. Things do not get a little better every day. To me, grief has been cyclical. It just keeps coming back. The person you miss never stops being gone. And my heart will never fully recover from Dad's loss. 

Maybe grief is more like waves. At first, it’s a big rush that capsizes you and pulls you under in one big tidal wave. The smaller waves continue to hit you daily, never letting you forget that the person you loved is gone. After that, it just comes at the most random times. I've been watching TV or vacuuming and that big wave will hit me again and suddenly I just start welling up and soon I’m sobbing on the couch with no end in sight. I never knew anyone could cry this much. But one thing this past year of grieving has taught me is that you have to let the waves of emotion wash over you whenever they rise up. And I am lucky to have a husband who has held my hand and let me cry. Every. Single. Time.

Now it has been a year. A whole year since I've heard him say “I love you, princess.” And I’ll never hear that again and that’s what’s so hard.

My very favorite picture of us. Dad watching a game and letting me play beauty shop.

He was singing to me as we danced. I guess you say. What can make me feel this way...

I do have the cutest distraction in the world. Crosby. That wonderful little dude. 

And he fills my days with love, joy, beauty and hope. When Crosby was born my real adventure began. But in the midst of it all, I miss my dad. I spend so much time wishing he were here for all of this, trying and failing to convince myself that he is, in some way. I know he would have all the right things to say, and then I cry because he's not here to say them. 

There are things we choose to believe because we like the way they make us feel. I may never know for sure if people--before they're born and after they die--exist together in some place in the beyond. I may never know for sure if my dad was holding Crosby before he got to be mine. But believing it to be true brings me comfort, and I cry happy tears visualizing my Dad holding Crosby's hand moments before he was born to me and Dad whispering to him, good luck, grandson, she's all yours.

Please, if you have a second, say a little prayer or send happy thoughts my way, and my mom's way, and my sister’s and my niece's and aunt and uncle and Mama and so many who loved my Dad as much as me. I know that is a lot of people. He had such a profound affect on people. I am so grateful for that. Grateful that I got to share him.

I don't expect to ever get over the pain of Dad's death. But maybe, just maybe, by the grace of God, I'll get through it.

There are ups, and there are downs.
Life is beautiful and life is hard.
We carry on.

Daddy, I miss you. I mean, I REALLY MISS YOU. I know you’re looking down on me. I know every time I cry, you are there whispering for me to stop. I hope I’m making you proud. I hope that you know how much you’re missed.

I love you to the moon... and back.

{I read the following poem at my Dad's funeral. It was the perfect way to honor him because it perfectly described him.}

Daddy, this is for you, again:

I had a father who talked with me.

Allowed me the right to disagree,

To question - and always answered me,

As well as he could - and truthfully.

He talked of adventures; horrors of war; 

Of life, its meaning; what love was for;

How each would always need to strive 

To improve the world to keep it alive. 

Stressed the duty we owe one another 

To be aware each man is also a brother.

Words for laughter he also spoke, 

A silly song or happy joke. 

Time runs along, some say I'm wise, 

That I look at life with seeing eyes. 

My heart is happy, my mind is free 

I had a father who talked with me.

Love,

Carmen