A sense of perspective

Baby boy has what is called "coarctation of the aorta". Basically, his aorta is narrowed in one section. We are being told right now that if it doesn't fix itself (meaning, if the measurements stay the same or worse) he will need surgery. I will go every 4-6 weeks to have measurements taken via ultrasound to determine if the surgery will need to be done at birth, or later. If there is a 30% chance or greater that it will need to be done at birth, we will need to deliver in Boston at Brigham & Women's hospital so that the baby can be as close as possible to Children's Hospital. We will have an amniocentesis done at about 35 weeks to find out if this is related to a genetic disorder (such as Down Syndrome) and will meet with a pediatric geneticist in order to educate ourselves about all the possible genetic syndromes it could be, since the doctors are also operating under the observation that the baby's nuchal fold (skin at the nape of the neck) is thicker than normal.

A lot to read? Ya, try being us the past 6 weeks. Here is a run-down of our life since April 4th:

-my brother was admitted to the ICU with a double lung infection and nearly died

-I was diagnosed with Placenta Previa.

-E was diagnosed with Hip Dysplasia, and uses a brace every day for sleeping

-We were sent to a pediatric neurosurgeon to asses the circumference of E's head and see if there were any issues (there aren't, thank God)

-At our follow-up appointment with the OB in the beginning of May, we found the Previa had cleared, but the baby's nuchal fold was measuring "thicker than normal".

-We were sent to Boston for an extensive ultrasound of the baby. There, we found there is an issue with not only his skin fold measuring large, but also his heart

-I went to the stomach doctor with right upper quadrant pain and am scheduled for an ultrasound next week

-Today we had an ultrasound of the baby's heart, where we found he has Coarctation of the Aorta

-E will be having an ultrasound of her heart to rule out any issues (we requested this, and the doctors agree)

To say our lives have been hectic the past month is an understatement. Some days I wake up thinking I must be living someone else's life. But, then I remind myself that it is important to always keep a sense of perspective. I always remind myself that things could always be worse. E's hip dysplasia could have been more serious, and the neurosurgeon appointment could have not gone as well. And, even though my husband and I are so scared, this heart condition that baby boy has really could be worse. And, perhaps the most important thing, is that hubby and I are not going through this alone. We have each other, but we also have our families and friends, all of whom have been pillars of support. And let's not forget the doctors. The Pediatrician called me tonight and spent close to a half hour talking to me about baby boy and what she will do in order to ensure the best care for him. She also told us we are doing a great job at being the best parents we can be. Doctors like that truly are priceless.

I think keeping a sense of perspective in times like this helps me to not completely lose it. If I keep remembering it could be so much worse, and remain thankful that it isn't, then I avoid the pity party that I sometimes want to give myself. It also helps me stay strong, for myself and for those around me. I am learning how to be an advocate for my children, a lesson that has proven to be invaluable. I have finally come to the point where I don't care how many times I have to ask or how much I have to push to get something done. As the pediatrician told me tonight, there is no such thing as overreacting when it comes to your children. I'd like to think she is right.