Tuesday, May 26, 2009

In the beginning...

The most logical thing to do is start at the beginning. I will try to be short and sweet and not leave anything out!

After the initial shock of being pregnant, I was elated by the thought of having a bun in the oven. Having children was always in my future. Having been a camp counselor at the YMCA for years, a babysitter for many families, and also a preschool teacher's assistant, I knew that I was fully prepared to have a kid.

My pregnancy was the BEST 40 weeks and 4 days of my life, and also the longest I had been sober since I turned 18! I quit smoking, quit drinking, and did all the things every pregnant woman should do to have a healthy pregnancy and a healthy baby. I even gave up eating sushi and blue cheese for 9 months! I worked as a bartender until two weeks before delivery. Everything had gone as planned with no complications. I was the happiest and healthiest I had ever been.

My plan for labor was a simple one. Little or NO intervention from the doctors; an all natural, drug-free birth in a free-standing birth center. I had planned to give birth in a tub filled with warm water. I ended up laboring in that tub FOREVER! Almost 12 hours! The midwives were fabulous. I did not even see an OB until my water broke at 9 centimeters. When my water broke there was meconium (baby poop) so I was not able to have the baby in the water. Due to the meconium surrounding the baby the midwives called in respiratory specialists in case of any complications. I squatted on the bed with the support of a squatting bar, and after 24 hours of labor and 40 minutes of pushing, my baby Lucy was born.

When the midwife placed my baby on my chest for the first time, Lucy and I immediately locked eyes. I knew then that something was very wrong but the blissful high I had from labor and delivery kept me calm and happy to have her in my arms. Lucy was crying and VERY alert for being a few seconds old yet she was a little blue in color and had a very, very bloated belly. They wiped her down, sucked out her nose, and ripped her from my arms to go inspect her. Until then, I had never been so scared or felt so helpless. While I was being cleaned up in the delivery room they had transferred Lucy into another room for observation and x-rays. There they put her on oxygen and started pumping her stomach. The x-ray showed that her lungs were under stress due to her stomach being so full of gunk.

This is Lucy just 3 hours after joining us earth-side...

After being cleaned and stitched up (I had some very minor tearing), I was finally able to go see my baby. At one hour old, she was already hooked up to monitors and machines checking her oxygen levels and having green mucus pumped from her little tummy. I was informed that she was to be transferred to another hospital in Sacramento, a NICU, about 20 minutes away. The labor and delivery nurses then informed me that they would prefer it if I stayed for monitoring in case of blood loss after delivery. Four hours after delivery, I checked myself out of the hospital against medical advice and followed my newborn child to Sacramento. They wouldn't even let me ride in the ambulance with her. All I could do was stare out the window and cry.
I was utterly exhausted from a 24 hour labor and the emotional roller coaster of having my newborn child torn from my arms. I was loopy from exhaustion, unsteady and could barely hold a conversation. I can vividly remember telling the nurse in the NICU that I hadn't even gone pee yet, and it had been over 5 hours since delivery. I had to find a toilet! I spoke with Lucy's doctor and he advised that I go home and rest because tomorrow would be a long day. At 18 hours old, Lucy was to go in for surgery to repair multiple intestinal blockages called Meconium Ileus. At the time, I had no idea that this was a symptom/side effect of having Cystic Fibrosis.

Lucy made it through surgery and was in recovery in the NICU for over 3 weeks. The first two weeks, she was not able to ingest anything and was fed intravenously while I pumped my mommy milk and stored it in the NICU freezer. I was adamant about breastfeeding before Lucy was even born. I pumped every 3 hours around the clock to make sure my milk came in. I wanted to guarantee that my milk would be ready to go whenever she healed up inside. It would be two weeks before she would be able to ingest anything by mouth, but she took to it like she had been breastfeeding for months!

The hospital provided RV parking on site so I was able to borrow an RV for the 23 day stay. I would not be leaving my child for anything. Although we had just met, I knew Lucy needed me and I needed her. I wasn't going anywhere! I would only travel home every few days when I couldn't stand my own stench anymore...just to take a shower.

After many tests that include a sweat test and DNA test, Lucy was diagnosed with Cystic Fibrosis at 2 weeks old. I had no idea I was even a carrier, and to find out that Lucy's dad is a carrier also!? I was devastated! I wondered what the odds actually were that I would meet and procreate with another CF carrier. I thought, "Why me?"

The "why me?" phase was short lived because I had a newborn baby to take care of. I had no time for self-pity. We were finally able to take Lucy home! Breastfeeding was a success and went off without a hitch. We are still breastfeeding at 3 years, and I have no plans on weaning anytime soon. We practice child-led weaning, and Lucy now nurses about 1-2 times a day. I believe breastfeeding has played a major role in keeping her so healthy thus far.

Lucy is now 20 months old (in this picture below) and the adjustment of having a kid with CF has been fairly easy and without incident. It is certainly different then what I had expected life to be with a child, but luckily she will never know anything different. It is what it is and we can't change it. I can only hope to raise a happy, well-rounded, down-to-earth child that grows into an adult with gigantic self-confidence and a greater understanding of the world around her, not just her own world.

I have created this blog, not only as an outlet for me to "get it all out," but also create awareness about cystic fibrosis(CF), and what it means to live with it, live with it in your family, and what raising a child with CF entails (and other random thoughts I may have!)
I hope people laugh. I hope people cry. I hope people read it and learn a little more every day about the little girl who means so much to me. The little girl that has changed my life for the better. The bravest, strongest little girl that I call LUCY!

If you ever have any questions, please feel free to email me!

Thank you for reading!

~Kacie Tuck


  1. I can never tell you enough how amazing I really think you are. Seriously. Reading your blog makes me cry I can't imagine living it. Lucy is so beautiful and smart and lucky to have such a great mama!

  2. I am a mom of three kids and two have Cf. I have a son who is three in August and a girl who is 10 months old with CF. I understand what you're going through. If you need support or a person to talk to about Cf let me know. She is adorable and I think it's great that you are still nursing her! I'm still nursing my youngest too! I love it!

  3. I am not a mom of a child with CF (at least I dont think, I am carrier but I do not know if my fiance is one and our first is due any day now) but on August 1 I lost my very bst friend Corey to CF. He was my first love and to this day I never stopped loving him. I know how hard it is to watch someone you love go through that battle, though Corey isnt my child, even though we were broken up, he was still a very big part of my whole world and watching him hurt and battle for his life killed me and when he passed a part of me went with him. I have read you entries and you are such a great mom, your daughter is a very lucky girl to have you. I will continue to read your blog, since Ive met Corey I feel a bond with others who face this battle as well. After med school I plan on working with CF children. We dont know each other however I am a great listener should you ever need someone to talk to please feel free to email me, Ill keep praying for your family and I hope Lucy continues to do well. My email is cryssygurl90@yahoo.com should you ever wish to talk more. God bless.

  4. Hi Kacie,

    My name is Margaux and my son was born with CF. I found your blog through other CF moms blogs and I thought I'd introduce myself. We have a lot in common. My son was prenatally diagnosed with CF but when he was born at Sutter Memorial (the hospital I assume Lucy had her surgery at) he had a blockage. Dr. Greenholtz operated on him at 30-hours-old to clear his MI. We were in the hospital for 2 1/2 weeks so I know what a stay in the NICU is like. I currently live in Santa Rosa but will be moving back to the Sac area at the end of the month with my husband and son. I was seeing Dr. Perez but when we moved I ended up at the UCSF CF clinic and I plan on staying with them. I love meeting other CF moms for the support and love seeing that you are in the same area. I'd love to meet up sometime. Let me know!


  5. I want to thank you for what you are willing to share on your blog. I am a mom with CF. My husband is not a carrier, so luckily our daughter was spared. I admire your strength and all that you do for your beautiful daughter.

  6. Thank you for sharing. I am new to the world of CF. My 2 month old was just diagnosed and it has been a rollercoaster ride so far. It has been so helpful to read the blogs of others who have been there too. I started my own blog and would like to connect with other cf moms! Stop on by.

  7. Hearing your story really resonates with me. My daughter was also diagnosed at 2 weeks old and now at almost 4 months I am just starting to journal my acceptance of all that is happening to us. Thank-you for sharing. It helps so much to know that there are people out there who have experienced the same thing we are going through.

  8. Thank you for your blog. Our stories are very similar. My son is now 24 months old and was diagnosed with CF when he was 4 weeks old. Initially, when I received the news I thought I would never get over it and that my life would never be the same. I remember thinking " I will never smile again in my life, what a shame" and actually feeling it.

    Little did I know that after digesting the news and moving on I have not stopped smiling. My son, the love of my life makes me laugh and smile always. He is the smartest and sweetest little person ever. Before him, I had never smiled so frequently as I do now.

    If someone would have shown me a picture of my life today it would have saved me months of crying myself to sleep. We live a normal life. I give him his meds and take to his regular checkups at the CF clinic (every 2-3 months) Besides that....nothing is different then any other 2 year old. He has been hospitalized only once for 4 days due to an intestinal obstruction that was resolved without surgery. Yes, it wasn't fun being at the hospital for 4 days, but it only made me stronger. These experiences only make us stronger and better human beings.

    We are lucky to have had kids with CF born at this time. Meds and research on this condition are advancing so much! I do strongly believe that both your daughter and my son will see and be part of the cure for CF.

    I will continue reading your blog. You have inspired me to share a piece of my story on this comment and for that I thank you. It's the first time I actually write somewhere about him, me, and what we have been through. It actually feels good and somewhat liberating.

    Keep writing! I will be here reading : ) I wish you nothing but the best..... - A Fan

  9. Ahhh, Kacie, this has made me weep. Jillian, who is close to 9 months now, has CF, but she wasn't diagnosed until about 2 months. She's doing well so far. Your photo of Lucy's belly at birth did me in. Waterworks.

    I just read your car wash post and it made me cry too. Guess maybe I should head to bed, LOL.

    Take care! Hugs to Lucy.

  10. Kacie, I am not the mother of a child with CF, my daughter has SLE. My daughter has a son with SLE and ectodermal dysplasia. I found your blog by accident, perhaps, if these things really are accidents.
    Your strength and determination is very moving. Lucy is blessed to be born to a woman who sees the potential in her child, a woman who sees joy.
    I believe God gives us this attitude to just 'do it' in caring for our children. When my daughter was small theree wasn't any time to look around and wonder what would become of all of this. Just time enough to 'do it' and enjoy those wonderful smiles. I have SLE and I have taught school for almost 30 years. Some people have said we are stubborn but I don't think so. I think, like you, we just have a different appreciation for life.
    As strange as it sounds we are among the lucky ones.
    God bless you

  11. Hello Kacie, I was touched by the pure love and joy that comes from every word you have written, and I did cry a lot at the same time :) You and Lucy are blessed to have each other, i admire your strength and optimism and i was amazed how unbelievably brave Lucy is when reading the story for the blood test! She is so beautiful and wonderful, I wish her to be very healthy, to grow into a wonderful young lady that you could watch and adore every day!
    All the best wishes from distant Bulgaria,

  12. As a stepfather to a cf child I say Thank you for this page. It gives a great account for the daily lives of parents and the children. It also shows that there is a happy ending to these stories and that we as parents can enjoy the lives of our children for the fact they are children instead of what the mutation is doing to them. Again THANK YOU from Georgia.

  13. I plan on reading much more of your blog. You have a very positive, upbeat way to your writing. Your daughter is lucky to have such a caring mother. I have never met anyone with CF, in fact I know very little about it. I plan to learn more about it through your blog. I'll pray for a cure for your family. I'd say enjoy every moment with your daughter, but I'm sure you already do! :D


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