No real changes to report. I coughed a bit more than I did yesterday but significantly less than I have been pre-Kalydeco. And the color and quantity of the mucus is definitely lighter. I'm beginning to accept that Kalydeco is going to work slowly for me but that's ok. A lesson is patience. Maybe I won't be one of those people who sees a 30% increase in lung function but that's ok. It has already helped my cough and mucus so will hopefully help my lungs stay infection fee for longer periods of time. And any increase in lung function is welcomed!
So here is a little about me and the birth of my twins and the fight for my health that came shortly after...
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 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 more 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 before I got pregnant.
We found out I was pregnant Memorial Day weekend and we were so thrilled. When I saw my obstetrician at around 9 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. I transitioned to a peri-natologist (high risk OB) who was affiliated with my CF hospital which also had a level IV NICU so we had all our bases covered. I can't say enough praises for my OB, he was fantastic the entire pregnancy and I owe my sanity through the pregnancy to him.
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 Ceftaz at 29 weeks after developing a productive cough but managed to continue to work from home until my boys were born.
One Thursday 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 so we hed to the hospital and I was put on a saline drip, two heartbeat monitors and a contraction monitor. 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 Saturday 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 the operating room (with about 20 medical staff in the room) and everything went very quickly. Both boys were born, the Neo-natologist teams made sure they were stable, and I got to briefly see them as they were rushed to the NICU.
J 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 as a grower and feeder. L (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. L was in the NICU for 6 weeks and his PDA closed on its own by the time he was 2 months old.
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.
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.