March 29, 2007 was my original due date for Marissa. I had learned around 31 weeks that I would not make it to my due date because she was in distress and would need to be born a little early. I came to grips with this reality. When March 29th rolled around and Marissa was already two weeks and two days old, I felt a little twinge of sadness. I knew that if things had progressed "normally" with my pregnancy, she might be just days old, or maybe not even born yet. I was feeling a little sad and sentimental that day. Until we got to the hospital. Then those feelings turned to deep sadness and fear.
Sunday, March 29, 2009
When we got to the hospital that day, we were told Marissa had to be re-intubated and was now in congestive heart failure. In her case, because the valve that was supposed to close (PDA) had not done so yet, it had grown quite large and was shunting way too much blood into her lungs. This caused her to go into severe respiratory distress as well. She was essentially drowning because her heart was not functioning properly. Our wait and see method had failed.
To complicate matters, the doctors suspected Marissa might have a Coarctation of the Aorta behind the PDA. Colorado Springs does not have a pediatric cardiac surgeon that could handle the CoA, so the decision was made to transfer her to The Children's Hospital in Denver. She was taken there via ambulance and Jeremy and I followed shortly afterward. We were told by the docs in the NICU here in the Springs that they had spoken to a doc at TCH and briefed him on Marissa's condition. Our doc was not sure if Marissa would go into surgery that night or if they would wait until the morning.
It was pretty late in the evening by the time we got to Denver and Marissa had stabilized. It was decided to wait until the morning, which was Friday, to consult with cardiology. Cardiology made brief rounds that morning and decided she was stable enough to wait until Monday morning to do anything more. We were frustrated because she was sent to Denver to have surgery and now that she was there, they wanted to do more "wait and see", this time, 70 miles from home. Ultimately, it was determined that she most likely did not have the CoA and she would have surgery to close her PDA on April 5th, a week after she got to Denver. She got through the surgery and, as it turns out, she did not have a CoA. Now, her heart is as healthy as anyone could have expected and she is thriving.
This morning, as I reflect on what was going on with Marissa's heart two years ago, another mommy who is struggling with her little one's heart condition is weighing heavy on my mind. She calls herself MckMama and her son Stellan is not doing well today. He was diagnosed in utero with severe heart problems and his parents were told they were going to lose him when he was 24 weeks gestation. He survived and his heart condition turned around so much that, when he was born Oct. 29, 2008, they looked for evidence of the heart condition and found none. He was healthy as could be.
Until last Sunday. He was hospitalized for respiratory distress and then went into Supraventricular Tachycardia, or an extremely high heart rate. The doctors have done everything to bring his heart rate down to no avail. They are surprised his heart has withstood the danger thus far, but he is getting worse. His heart will fail very soon if he can not be brought into a normal rhythm. MckMama and her family are hanging on by a thread. I can relate to this wonderful woman. I feel her pain. I have sat by my baby's bed wishing I could trade hearts with her.
Please pray for MckMama, Stellan, and the rest of the family. Visit her blog and leave a message for them. Pray that Stellan's heart goes into a normal rhythm very soon and they will not have to intervene surgically, which is extremely risky and does not have historically high rates of success for kiddos his age.
Posted by Alicia at 9:01:00 PM