Matthew's Pictures

May 8, 2009

2 Month B-Day/Death Summary

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!

13 comments:

Joyce said...

HI Jenn
I dont understand all yu are gong thru but my heart hurts for you. But I also have a huge huge ton of respect for you. Making a decision not to prolong his death is the hardest decision to ever make and I totally admire you for putting Matthews needs before your desires. I work in NICU and see situations where there is nothing left to do and a decision needs to be made. But I know you read that paragraph and feel terrible - but from my aspect, they were givng the facts very clearly so there was no doubt in anybodys mind (as in people who will meet you while you had Matthew still with you on earth) that would approach you with more options. INstead it is written that - these parents have discussed everything to do with their son and know his outcome and have chosen this route to take. Anyone reading this will only respect you for making such a difficult plan, but you needed to speak for Matthew - only you can voice his needs.

May God continue to hold you close and may you feel those wonderful arms around you

Joyce

Stacy D said...

Jen,

Those reports are so hard to read. It was so difficult for us to read through Isaac's. But like you said... Matthew hasn't really died. There's such a finality to that word. While he's no longer here (and I know you wish so deeply that he was), he IS alive and in the presence of our Father. And while I know the grief is still so raw, we can have hope in the fact that you'll see your sweet Matthew and I'll see my sweet Isaac again... for eternity.

Praying for your heart today, and tomorrow on Mother's Day.

~ Stacy

carebear said...

Oh Jenn...I'm so sorry. Doctors are cut and dry...it's just the facts...without feelings. Mom's need feelings. And please no I feel for you. :( I'm am sad he is not in your arms every day, but happy his infectious giggle is cracking up the angels that surround him. :) I am also angry that you were put in a position where you feel guilty about well informed choices...that ultimately God made way before your mind and heart did.
I will celebrate the 8th of every month as the day Matthew LIVED! hugs!

Stephanie said...

Jenn I am so sorry, I can not say anything other than I think that no matter what you would have done, God already chose Matthews life. I am always praying for you and thinking about you. I'm so sorry you were so sad today. But it shows how much you love your lil man

Laura said...

So hard to see all those words in black and white. You continue to love Matthew so well....praying for your heart today.

Stephanie said...

Hi! I'm sorry for your loss. I can't imagine having to read those words! I know that nothing will heal the pain, but I hope you can find comfort in the fact that your little boy is now in Heaven with God and watching over you. I'm new to your blog and hope you don't mind me following along! :) I know we don't know each other, but my heart aches for you and I will keep you and your family in my prayers!

Donielle said...

I can only imagine how bad that must have hurt to read those words. But it's important to remember that you made your decision based on faith. God will see you through this tough time.

Donielle said...

I forgot to say, "Good luck with your new business!" I hope you do really well with it.

6adams said...

Hi Jenn, I cried as I read your entry on this day ~ as I do for most days : ). I pray the enemy has no more hold on your emotions! GOD is in control and I know you have always known you and Josh made the "right" decision based on God's truth.
It is so hard for us to understand here on earth why things happen... Your mom has a couple of cd's from our church about Joseph. He was tested over and over, but he always stood on God's truth and love. He was made mighty! Maybe you can ask her if you can borrow them. Our pastor did a series of sermons on Joseph. Your mom was there for the first one, so I sent her the one from the next week. If you would like to continue to hear Pastor David's message on this, let me know. I can mail you the rest (I think maybe 2 additional weeks??).
Take care! Always praying!
Michelle

Chelsea Pang said...

You are so brave to read your story from the perspective of the medical world. It can be healing too.

Leslie said...

Hi. My name is Leslie. You might think this is weird, but .. my son Dexter Beckett McGinty died on March 10, 2009, after living about 11 hours. We live in Palm Bay, FL. I was going through my "Dexter" stuff since I am making a scrapbook, and I found his obituary. Next to his obituary in the Florida Today, was your son's obituary. Our memorial services were on the same day. I just felt compelled to look you up. (I am on myspace.) I just wanted to tell you that I am there with you in the pain you feel. Our son died from prematurity and a brain bleed so it's not exactly the same, but we had to make the decision to turn off life support and we are still grieving so badly. The 27th of May was my son's due date. I guess that's why I was looking through his things. Anyway, I just wanted to say .. that locally, I know how you feel. I hope this wasn't too weird. I hope you are making it through.

Anonymous said...

Hello, my name is Jera and I stumbled upon your website one day as I was searching for answers to problems in my own pregnancy. I want you to know how amazing I think you are! And you are such a wonderful example of strength! What excites me most is how commited you are to the Lord, even during the most difficult time of your life. Thank you, so much, for your wonderful testimony! I would love to get connected through e-mail if you are interested. My address is jerakrager@yahoo.com.

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