Today marks two months since Matthew was born and died. The day really was like any other has been lately, until the evening. I went to work, and decided today was the day to request Matthew's medical records. I figured it would take a week to get it together, but it was ready for me to pick up this afternoon. They told me over the phone that there were 29 pages (shocking since my Matthew only lived 3.5 hours!) and they charged me $1 per page...grrr. I wasn't very happy about that, but I wanted the records and did what I had to do.
I waited until Josh got home and we went over the first few pages together, before his short attention span kicked in. There were many surprises and new things that we learned of that day. After Josh walked away, I stopped reading for a little while. When he went into our bedroom to watch a movie with the kids, I took the papers back out and poured over them. I wanted to cry, but needed to be alone. Josh doesn't show any signs of grieving, and perhaps he is "over" it, but I am definitely not. Reading the papers, tears just started rolling down my cheeks, while I started sobbing harder than I have in a very long time. It wasn't the two month milestone...it was reading the notes that did it.
"Infant presented with initial weak cry, poor muscle tone and heart rate of 60-80. The infant was cyanotic (blue due to low oxygen). Evident was a bell-shaped thorax, prune belly, and some clubbing of the feet. "
Matthew had a wrinkled belly appearance, but I didn't think much into it until a couple of weeks after he was born. I thought all PUV babies had bellies like that, but I found that wasn't so. This report confirmed my suspicion that Matthew also suffered from Prune Belly Syndrome, also known as Eagle-Barrett Syndrome. PBS occurs in 1 in 40,000 live births. It basically consists of obstructive uropathy (PUV), undescended testes, and none or very little abdominal wall. He was a very special little boy is how I see it!
"Congenital atresia"
One of Matthew's ears was folded over which I assumed was from lack of fluid and having his ear pushed against the side of my uterus. The term above is used to describe an ear that is not fully formed, usually to include some inside parts of the ear. Matthew may not have had the ability to hear out of that ear, and would have required some type of surgery to correct the appearance.
"Infant admitted and placed on mechanical ventilation. Poor response to high conventional settings. Goal is to stabilize infant until such time as family can visit him. The parents are clear in their wish that we discontinue life support. The mother specifically does not wish that iv be placed or that surfactant be administered. I have reviewed the possible scenarios of intervention with the family, including the most aggressive measure of treating with surfactant and referral to level III NICU for high frequency/ECMO and possible dialysis. The family has remained unwavering in their desire to forego any treatment measures beyond the current stabilization and wish to discontinue support once everyone has visited with the infant."
Reading this passage made me feel so very horrible. The wording just really got to me and made me feel that I didn't want to help my baby. But I did so much! I'm really struggling with my guilt again today. I wanted him so very badly, but I loved him too much to keep him here. I want to be holding my two month old right now...nursing him and stroking his cheek....strolling him around the neighborhood...NOT sitting at my desk at work all day, staring at his picture and yearning to just hold him one more time! Oh Lord, I miss my baby so much!!! But I know if I didn't lose him, that I would not have developed such a passionate, deep relationship with Jesus Christ. Having that love for the Lord is so much more important than having my Matthew here with me, and I know that. But it doesn't mean I don't miss him constantly. I know he is in a perfect body, feeling perfect love. I know he doesn't feel pain, but yet I'm crying now as I type these words. Why is MY pain still so deep? I have never asked "why" as many times throughout my whole pregnancy and afterwards until today. Lord, even though I know my Matthew's life was planned out before he was even conceived, these feelings that I chose to let his life end are just tugging at me.
"The baby is in the NICU at this time and is actively dying."
I really despise the word "die." He's not really dead, he just has a new body. He is very much alive in Heaven with God the Father, where I really look forward to seeing him some day.
Happy 2 month bithday, my precious baby boy!
