The Greatest Reward in the World – Karen Vega’s Story


Karen and family (approved)

Deciding on Parenthood

I always knew I wanted to me a mom from the time I was a little girl, so when my husband and I got married, deciding to start a family was an easy decision. We did however put a lot of planning into starting a family. Luckily my lung function was stable with (FEV1 in the mid-high 70%’s) and I am pancreatic sufficient. I knew I wanted to be a stay at home mom so I continued to work for 4 years (including while I was pregnant) to save up so I could afford to do so and my husband had a genetic test to rule out being a carrier of CF.

First Pregnancy

We found out I was pregnant Memorial Day weekend and we were so thrilled. When I saw my obstetrician at around 9-10 weeks she gave me an ultrasound just so I could get a tiny peak at the baby. Well that ultrasound changed my life forever… I learned that I was carrying twins! I called my husband in total shock and it took about 2 weeks for it to really set in.

Despite being classified as a high risk, the pregnancy was textbook and uncomplicated. I loved being pregnant and it agreed with my body – no morning sickness, a 40lbs weight gain, stable lung function (apart from a slight drop at the end due to the lack of space in my lungs). I had one course of IV’s at 29 weeks after developing a productive cough but managed to continue to work from home until my boys were born.

The Birth

One Friday evening, two nights before I reached 32 weeks of pregnancy, I started to get mild but consistent contractions. By the time morning came they had not let up and I was put on a saline drip, two heartbeat monitors and a contraction monitor in the hospital. The doctors told me that they would not stop labor at this point, they were just going to monitor me and the babies and see how it went.

On Sunday afternoon, almost 48 hours after my contractions, they told me that I needed an emergency C-section because one of my sons was showing signs of distress. The Neonatal team came up to talk to me about the complications that could happen from a 32 week delivery and what I should expect. I’m not going to lie, what they told me scared the daylights out of me but I didn’t have a choice at that point. I was wheeled into theatre (with about 20 people in the room) and everything went very quickly. Both boys were born, the NICU teams made sure they were stable, and I got to briefly see them as they were rushed to the NICU.

Jayden was born 4lbs 10oz and was on Bi-PAP for just a few hours. He had no preemie complications other than being jaundice and having to learn how to eat properly (suck, swallow, breathe). He was in the NICU for 4 weeks. Logan (the twin that was showing distress) was born 4lbs and had a few more problems, He was on a ventilator for a few days and Bi-PAP after that, had a PDA (hole in the heart), needed a blood transfusion and also had jaundice. On Christmas Eve, at 11 days old, the boys got to reunite in the same bed for the first time since birth. Jayden was in the NICU for 6 weeks and his PDA closed on its own by the time he was 2 months old.

Karen's Twins (approved)

 For me, coughing after my emergency section was rough. Since I didn’t do IV Tobramycin while pregnant I decided to do it while in the hospital after delivery and while the twins were in NICU so I could be in top shape for when they came home. It took me about 3 weeks to feel normal again after the surgery.

The First Year

The year following the twins’ birth was a rough one, for a multitude of reasons:

1. There was two of them and one of me

2. I was breastfeeding & chose to be off TOBI

3. I had a C Section & was on IV immediately after delivery for 3 weeks

4. We had to limit visitors early on because of their prematurity

5. I wound up with kidney stones

6. I Got the flu in July ’09 for the first time ever – 2 weeks of home IV’s

7. The boys both got RSV Respiratory syncytial virus) in Dec ’09 and I wound up sick – another 2 weeks of home IV’s

I wasn’t sleeping well for a long time. Fitting in two treatments a day was impossible. July ’09 my lung function was the worst I’ve ever seen it – below 50% predicted – but I wasn’t feeling well and thought I would get back to my baseline once the first year was over. I just didn’t have time to think about anything other than the babies at that point in time. I was getting by doing the bare minimum vest & nebulizer treatments. I had very little energy to do anything and looking back I was probably somewhat depressed feeling “trapped” inside my home that first year. It was extremely difficult to go anywhere alone with two babies. It was near impossible to go even food shopping with two infants in car seats. I was very lucky to have my mom with me to help while my husband was at work.

Karen with Twins (approved)

After my 2 weeks of IV’s in December ’09 something clicked inside me and I knew I needed to get my butt in gear somehow. My lungs weren’t magically going to get better on their own without some hard work on my part. For the first time I was actually scared for my future. I was angry at myself for not trying harder, for underestimating what CF can do in such a short amount of time. I want to live, for myself, for my husband, for my children. And not just live, I want to have energy, run with them, dance with them, play with them. I woke up one day and joined a fitness center and began swimming again. For the first time in probably close to 7 years I was exercising again.

The following April, I decided to give myself the biggest push I ever have and signed up to run the New York City Marathon for Team Boomer later that year. On November 7th 2010 I completed 19 miles of the marathon before being forced to stop due to cold and exhaustion. May be if I hadn’t had a chest infection at the time I would have completed it, but from the beginning of this journey it was never about crossing the finish line. It was about challenging myself and pushing myself to be a better me. And I succeeded. I ran 19 miles when just seven months earlier I couldn’t even run a mile without getting out of breath. I was able to increase my lung function by over 50%. I learned so much about myself and I became a stronger person.

Karen Marathon (approved)


Click here to read the second part of Karen’s story…