Our Kids - Megan

Megan Grace Otfinoski was born full-term on September 12, 2004, our sixth child. She looked perfectly healthy at birth; she was pink, and beautiful. Within the next 28 hours, however, I noticed that she was breathing much too hard and fast. She was taken to the special care nursery, then eventually transferred to YNHH for more tests. We were shocked to hear the diagnosis of Hypoplastic Left Heart Syndrome. The doctors told us about the three-staged surgeries immediately after the diagnosis, and we were even able to meet the surgeon. After her first surgery was postponed due to less-than-optimal labs, she had the Sano modification of the Norwood procedure at 10 days old. The Lord blessed her with a good recovery, and she was able to come home from the hospital two weeks later. Megan was able to nurse, and gained weight slowly, but adequately. Three months later, she started having difficulty feeding, and she started to de-sat. She had her pre-Glenn cath on Jan. 3, 2005. She had a very difficult time after the cath; her sats dropped down into the 40’s and 50’s, so she had her bi-lateral, bi-directional Glenn surgery two days later, on Jan. 5. The surgery went well, but she had a very difficult recovery. The doctors had seen moderate to severe tricuspid regurgitation during the echo and surgery, and considered going back in to fix it. Megan was extubated, then re-intubated for a week. During her month-long stay in the PICU, it was determined that she had a paralyzed left vocal cord, making it very difficult for her to feed. She came home with an ng tube.

The following month was a nightmare. Megan had much difficulty nursing; she was gagging and vomiting much of the time. Despite my best efforts to get calories into her through the ng tube, she was not gaining weight. Another visit to the cardiologist revealed that there was an aortic obstruction, along with the tricuspid regurgitation. After an unsuccessful attempt to balloon open the arch in the cath lab, Megan headed back to the OR on March 8, ’05, for an aortic arch reconstruction, and tricuspid valvoplasty; her third surgery in six months. Despite a left lung collapse following extubation, Megan had a good recovery, and was home 8 days after surgery. She did well, and began to grow on a regimen of breastfeeding, ng feeds, and baby food. After a few months, we were able to remove the ng tube altogether.

Right around her 1st birthday, Sept. 12, 2005, she began to refuse to nurse. The next few months were nerve-wracking. She stopped eating, began losing weight, part of her left lung kept collapsing, and she just looked sicker and sicker. The dr. finally diagnosed her with congestive heart failure, and increased her medications. We headed to Boston for a cardiology consult. Soon after, Megan ended up in the hospital for a week with a respiratory illness; that probably saved her life. We were finally able to get her to keep the ng tube in again, and get her some nutrition. After many tests, we headed to Boston for a catheterization. Three days later, Dec. 5, 2005, at 15 months old, she went in for her 4th surgery; a tricuspid valvuloplasty with annuloplasty band. She recovered well, but stayed in complete heart block. So, 10 days later, she had a pacemaker implanted; surgery no. 5. Once again, she recovered quickly, and we were home a little over a week later.

Six weeks later, we headed back up to Boson to finally get Megan a g-tube. After that, she just took off. She began to grow, and catch up with her developmental milestones. She learned how to sit up on her own, then how to crawl and pull up, and eventually, started walking right around her second birthday Sept. 12, 2006. Finally, Megan was able to be a little girl, unencumbered by numerous medical problems. She stayed healthy throughout the winter, aside from cold or two. We had a good year, for the first time!

Then, in December 2006, one year after her surgery in Boston, a cardiology check-up revealed a narrowing above the tricuspid valve, restricting blood flow going through it. A follow-up echo in February revealed a little more narrowing. So in March, we once again headed to Boston for an exploratory/pre-Fontan cath, her first medical procedure in over a year. She tolerated the cath well, and we came home the following day; the first time ever to come home following a cath. The results showed that her pressures are a little high, making the Fontan questionable. A subsequent meeting with the surgeon determined that the Fontan is a bit risky, but a reasonable option. Megan will undergo the surgery on November 28, 2007, along with some procedures to help the tricuspid valve. We are uncertain what the future will bring, but the Lord has been so faithful during Megan’s journey, that we know she is in His hands, and we will trust Him to direct our path.

Written by Cheryl Otfinoski, Megan’s mom
June 1, 2007, revised 9/30/07