What a roller coaster of emotions this journey has been so far. Just two days ago we thought baby Eli had a rare and possibly complicated heart defect in addition to the Down syndrome. Today we had an echocardiogram done to confirm this diagnosis. Although he does have a heart defect, it is not Tetralogy of Fallot as previously suspected. Upon further inspection of his heart through ultrasound by the cardiologist, we finally received some good news. He has a small hole in his heart, called a Ventricular Septal Defect (VSD). This is different than the hole we thought he had previously, which is an Atrial Ventricular Septal Defect (AVSD). She did not see any signs of the AVSD. She did see a possible muscular VSD as well but that will close on its own. If future echocardiograms show signs of Tetralogy of Fallot it will be a very mild case and not as serious as we thought earlier in the week. But, as of today’s echo, she is pretty confident we are only dealing with VSD. Obviously we would prefer Eli to not have any heart defects but as heart defects go this is the most common and “routine” to treat. It will require open heart surgery between 1 and 4 months of age to patch the hole. He’ll most likely have a hospital stay of 2 weeks to recover. He may spend a few days in the NICU at birth but that will be more for the Down syndrome, not the heart defect.
So today we rejoice in this good news. The last two days were filled with despair. Today is filled with optimism. Once again I am confident that everything will be ok.
Thank you for all of your prayers. Today God proved to me that they really ARE working!
We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.
If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.