posted by Mel
Thank you all so much for the well wishes. I want to be able to tell you all about Simone’s entrance into the world, but I’m not ready with/don’t remember all the details. It was the hardest thing I have ever done, but it was the most beautiful and worthwhile thing I’ve ever done too. Here are some things I will cherish for the rest of my life: the love I have for the women (and it was a completely female support and medical team) who came together to bring me through it, the focus and positive energy I felt around the effort we were all making to bring this little girl safely into the world, the looks of awe I saw on the faces of each of my most loved ones when they saw my daughter for the first time, me touching her head as she was crowning, seeing her and touching her for the first time myself– especially hearing out loud the voice I’ve been hearing in my head for so long. She has the most beautiful face I’ve ever seen. I love her beautiful dark hair, her for-now deep blue eyes, her tiny fingers and toes (there are more than expected– more about that in a minute), and especially the searching expression on her face when she opens her eyes and takes measure of the person speaking to her.
I didn’t expect it to get easy after she was born, but I did hope it would get a little easier. I was released from the hospital two days ago, but I’ve been rooming in with her because she hasn’t been released yet. To me she is perfect, but she is not without her problems. She came 4 weeks before term, and she was growth restricted, so she is small even for a 36 weeker. While she’s a really good feeder, breastfeeding is not easy, and I have to pump after every feeding to build my supply. Fully 1/3 of my time I am completing some task related to feeding her, which makes it more of a chore for both of us and sucks some of the bonding opportunity out of it.
She is jaundiced, which is what kept us in the hospital another day when we thought we were going home yesterday. She is sleeping under a bilirubin lamp in my room, which means she has to be naked. That makes keeping her temperature up– particularly difficult for a preemie– quite a challenge. So we alternate skin to skin contact and the lamp with on top of someone’s chest on top of the bilirubin blanket with a lamp.
She has an extra thumb on her right hand. This in itself is not any disappointment, but we are trying to figure out what it means in connection to her overall development both in the womb and outside of it. That meant a genetic consult. The genetic consult meant a lot of testing. The testing meant a thousand needle sticks for which she was taken from me in the middle of the night when I was sleep-deprived and vulnerable and not told what was happening. When they couldn’t get blood (they kept her through the equivalent of two feeding times, so she was probably dehydrated), someone decided to keep sticking her over and over again. She came back to me cold, bruised all over, and without energy to feed, which put her behind for an entire day. I don’t take this event as a reflection on the entire hospital, which has, for the most part, been amazing, but I am very angry with the nurse who told me she was taking her to the nursery for a weight check and would return her in 2 hours so I could get some sleep and then let me sleep for more than 4.
She has a tiny dimple at the base of her spine which might be an indication of a spinal problem (probably not), so that required an x-ray.
Because of her two-vessel umbilical cord, she had to have a kidney ultrasound. That came back normal. There are numerous miscellaneous other tests that have been run or are being run related to the 2vc as well.
The latest most concerning news is that she has some heart issues that are going to need to be followed up on– 3 separate holes, all very common defects, but it’s rather uncommon to have all 3 at the same time. There’s no cause for immediate concern, but they need to be followed up, could have an affect on her ability to grow appropriately, and might require surgery within her first year.
I am trying not to see her entire childhood in and out of a children’s hospital spread out before me. I want a healthy normal childhood for her. I want that for all of our children. I want it for all of us parents, particularly those of us who have wanted so much and struggled so long to become parents.
Through it all, it gives me amazing peace and joy to look over at her now breathing gently under her blue light, blowing tiny spit bubbles from her last breastfeeding. She’s delicate and beautiful and dramatic and demanding and has come through all the challenges so far like a little champ. She has a ton of personality for a not-quite-4-day-old. She IS perfect– her own tiny Simone brand of perfection.