Mira
Did you know there is a whole “ICU” for babies and pediatrics just for heart defects? I surely did not. It is called the PCTU, pediatric cardiovascular thoracic unit. Our baby Mira was diagnosed with Hypoplastic Left Heart Syndrome, a restrictive ASD, and Turner’s syndrome all before she was born.
We went in to my regular OBGYN to find out the sex of the baby, and low and behold our life was changed forever, we where going to have a baby girl with a life threatening heart defect. I could tell something was not right, by how long it was taking the doctor to come see us, and also the ultrasound tech wanted to “show” the pictures to the doctor. The doctor came in and said she was not going to beat around the bush and the baby had something seriously wrong. In my head I thought, “what does she have fingers missing or something, I can live with that.” But no it was her heart. She didn’t know if it would be fixable or if the baby was going to survive at all. I could not even hear what she was telling me. I kept asking her to repeat herself. But she said she was not the expert and that we would have to see a specialist. The tears would not stop, and I am surprised I made it home. I can remember hugging my husband in the parking lot and telling him “it will turn out alright,” trying to be strong.
At U of M we got our diagnosis and were faced with three options; abort the baby, compassionate care (letting the baby die after she was born) or a three stage surgery. We wanted to give her the best chance possible, so the surgeries it was. Without surgery her underdevoloped left ventricle would not be able to pump blood to the body and without surgery she would die.
A plan was developed for her and she was one of the 1st babies to undergo a rare “intervention” while I was pregnant! At 30 weeks they stuck a needle in through my belly, through Mira’s lung and into her heart, where this restrictive ASD was, they then thread a balloon through the needle and ballooned open this restrivive atrial septum. This gave her the fighting chance she needed. She was the third baby to have this procedure done at U of M and the only one at that time to survive, make it through being born, and having two more surgeries on her heart, then get discharged at two weeks of life!
Through the pregnancy I was physically fine, emotionally it could get tough. But my husband and I took it one day at a time. People thought we were “way to calm” about our situation. We decided to stay as positive as we could. We always said, what if the doctor's are wrong? What if? What if? What if, even having these “three strikes” she makes it?
On January 27th 2009 we went in for the C-Section her surgeon and cardiologist walked in moments before they wheeled me into the delivery room, so we could sign the consent forms and they could tell us the plan and risks involved. They then informed us that she would be born very blue and sick, they thought her stats (blood oxygen level) would only be 30-40. And would not be hooking her to ECMO, a life support for babies, if it did come down to that decision. I can remember the mom next to me had just had her baby, the baby was in there with her and the baby was crying. It was one of the first times I thought this really isn’t fair! What if I don’t get to hear my baby cry? Honestly I really didn’t want to be in there, and thought it was unfair that they had put me next to a family that was so happy, when I thought mine was just about to be torn apart.
Well guess what she came out pink and screaming and her stats were in the 90’s! After I was in the recovery room for about an hour they actually wheeled my bed out to get see her in the stabilization room, I got to touch her and talk to her. She was amazing! Kicking her legs, I could tell she was going to be a fighter! She had surgery that day all while her heart was beating, and she did wonderfully! She had two open heart surgeries before she left the hospital of February 10, 2009 one day before my 28th birthday.
Do I still think it is unfair? Sometimes I have my moments, but I know god picked Jeremy and I for a reason. My friend one time said you are so blessed… It is a blessing from god that he thinks you are the right kind of people for such a trail, such a strong little girl! I think I look at life differently when mom’s are measuring their baby’s milestone by holding their little head up, rolling over, or a tooth… We measure her milestones by her monthly birthday. There is not an end to this letter, because I don’t know the end. And like I said when I was pregnant to people I don’t have a crystal ball to tell you what is going to happen. We will take our cues from Mira and she and God know what then next step will be. One day at a time we go with a little girl that does not even know she is brave.
Thanks for reading her story,
Katie Larrison