Last week, we revisited the place where our babies’ lives were saved, at Jackson Memorial Hospital. Specifically, we went to the Bascom Palmer Eye Institute with Baby B to see what we could do about her crossed eyes (strabismus). The local ophthalmologist saw her, heard a bit of her history, and said that he probably was not the right doctor for her, because he didn’t really work with children who have neurological problems. We appreciated his candor, but it felt like a wasted appointment. However, he referred us to Bascom Palmer, and we realized that it was the best decision for our little one. The ophthalmologist (and his team) were very thorough, and the appointment took about five hours. At the end, we were told to patch our little one’s good eye for half of her waking hours. We could be doing this until she’s ten YEARS old. She also may need surgery, but the good news was that each of her eyes independently seems to have pretty good vision, so she doesn’t need glasses yet.
I had a lot of feelings as we went to Miami and drove onto the campus of the hospital, which is also the campus of the University of Miami medical school. Somehow I missed that fact back in September, so now it makes more sense that there were 30 people in the operating room when I had the TTTS laser surgery — they were medical students! I was brought back to September, to walking into the emergency room, asking where the Fetal Therapy Institute was, being told to walk that way, take the elevator, go down the halls, etc. I remembered sitting at the fountain with the kind nurse who brought me preemie diapers to put in my bra (they had no nursing pads, but the surgery made my milk come in quickly), talking about her kids and watching a little boy play in the area. I thought about the hours-old tuna sub that I didn’t really eat the night before surgery while I had the long ultrasound. Although I didn’t really walk around the hospital in September, just being so near to where I experienced some of the hardest times of my life brought back a flood of emotions.
I looked at sweet Baby B, with her bright eyes and long eyelashes, her tight muscles and crossed-eyes, and I was so damn grateful that I had these memories of Jackson Memorial. Without that surgery, I believe she would have died immediately, and Baby A may not have lived either. The TTTS had progressed too far for their 26 week bodies to handle. I am so thankful for the world-class surgeon who performed the surgery, particularly as he has since stopped practicing and stepped down from his position at the Fetal Therapy Institute. He performed the surgery just in the nick of time (based on Baby B’s current health, I feel comfortable saying that even waiting a few more hours would probably have been fatal). The babies were not born in September. They did not have to spend months in the NICU in Miami. We did not have to bury either of our girls.
Even though Baby B has a lot of issues stacked against her, she is still happy (unless she’s not being held — then she’s mad), beautiful, and lights up so many peoples’ lives. The people at therapy love her. Even the therapists who don’t work with her will seek her out to say hello and remark on how much she smiles. She’s moving her arms and opening her hands more. She’s getting on track to sit. She’s a snuggle bug and can only sleep when she’s snuggling with someone. She loves people. She loves her family. She laughs when you nuzzle her belly. She’s just our little sweetheart.
Baby A is almost sitting on her own. She’s trying out food and making all kinds of different sounds. She likes toys and raspberries blown on her belly. She grabs her toes a lot and tries to take off her socks. She’s very calm and loves to sleep, but sometimes her sister wakes her up. She can roll over, but sometimes she forgets and gets stuck — and then she really complains! She kicks and grabs and is also our little sweetheart. Both babies are just perfect.
After a picnic with other moms of multiples and seeing some of the babies, I felt a little sad about how Baby B doesn’t look like Baby A, even though they’re supposed to look alike. My husband said the best thing he could have, “Baby B isn’t supposed to look like Baby A; she’s only supposed to look like Baby B.” (It sounded better when he said their names, but I’m not ready for them to be out there yet.) Even though they don’t look totally alike, they have the same little noses and perfect baby lips. Their eyes are the same deep blue/gray, and they both have long eyelashes. They like to lay next to each other with their hands and arms entwined. I think that Baby A is going to make sure her sister reaches her full potential (the rest of us will help, too, of course).