Friday, February 10, 2012

Miss her so much..

Just missing my girl so much and thought I'd share some pictures. What a precious baby she was.

But for comparrison, look how far she had come! She was truly the most amazing child I will ever meet.

Thursday, February 9, 2012

6 months

Today marks 6 months since my beautiful girl went to heaven. Six whole months without her. Six months is half a year. I don't know, it just feels like such a big thing. I miss her so much. I never will stop, but it's not destroying me daily and for that I am so thankful. Funnily, after I posted an update two posts ago, I started off on a rough patch. That's what grief is these days, going along with life and suddenly you've hit a rough patch. Might be a day, might even be an hour or it may last days or a week. Usually for me, it won't stick around longer than a week. It's really strange though, there are things that I might think would trigger a rough patch but don't and then things that just hit me out of left field! I had a dr appt about a month ago where the dr was not outright rude or mean but her comments and her overall attitude regarding Grace and her death was just so surprising and when I think about it, I am surprised that it didn't just set me off onto a rough patch but I was fine. Then the other week I saw a woman pushing her baby in the same carseat/stroller combo we have for Grace, that we never got to use. Now, THAT was hard. THAT did make me cry like a baby. In my van. At the park. Grief is strange.
Anyhow,  I mentioned helping other CDH families. In memory of Grace's 1st birthday, March 27 I am collecting items to donate to CHERUBS for their Hope Totebags. CHERUBS is a wonderful support for CDH familes and babies. When you sign up as a member with them, they send you a Hope Totebag, many people get them while still expecting but since we didn't know Grace was sick until she was born we got ours a month or so later? A Hope Totebag is a canvas totebag with the CDH awareness ribbon on the front and it is filled with things that are useful to us CDH families. Though the things are useful and great, the sentiment behind sending each new family this gift is wonderful. The bags are filled and funded by donations. Each item donated has a sticker on it that says "donated in memory of" or "donated in Honor of".
Since I won't be spending money shopping for birthday gifts or time planning a party, I'm spending my time and money to donate in her memory and if you'd like you can help!
Items collected are:
*Travel sized lotions
*Travel sized hand sanitizers
*Travel sized tissues
*small journals/composition books
*small baby blankets, any material but wool
*baby hats/booties/mits
*disposable cameras
*baby hand/foot mold sets
*small picture frames
*refillable water bottles
*small holders for a lock of hair
*onesies/front snap baby shirts
*small teddy bears/stuffed animals
CHERUBS also includes wristbands and a CDH baby book and some awareness pins.
Here is a link to the Hope totebags site.
I will gladly drive up to an hour to pick up any items you wish to donate! We will collect until March 15th to give me enough time to sort and box everything up to send it to get to North Carolina by her birthday! Feel free to call or text or email if you'd like to donate! Thank you SO much!
(419)450-0120 or

Sunday, February 5, 2012

The questions and the guilt.

The questions and the guilt. Boy are they both heavy. I am for the most part better about both of those things. But I do want people to know that they aren't alone and are normal for feeling both of those. When Grace was first born, wow were there immediately questions and immediately guilt. "How is it possible that she has what you say? I had ultrasounds and was told she was healthy" "What did I do to cause it" etc etc. The first day we were at U of M, one of her surgeons told us that we needed to know that nothing anyone did caused this and for a moment it helped the guilt but then it just came back. Guilt over EVERYTHING. I'm not kidding. I had someone tell me how silly I was basically for my guilt. Guilt over the amount of coffee or pop I drank while pregnant with her, guilt over how much stress I had or how many moves we made where I HELPED move things. Guilt over not simply saying "I have this out of left field fear that something is wrong with my baby, can we check one more time?" Guilt over not delivering at a hospital with a NICU, because then maybe she would have been intubated sooner and she wouldn't have worked so hard to try to breathe. It just goes on and on. Then came the guilt regarding my sons. Guilt that I truly was not there for them, even if I was home, my focus was not them sadly. I couldn't, as hard as I tried be what they needed. My husband was awesome, when he was home, he took them to the pool, to the park to play, etc. When I was home I was constantly hooked to my pump or doing laundry or learning about CDH, or calling the hospital etc etc. And boy did I feel guilty. Guilty when I was with Grace at the hospital and not with them. I had great nurses tell me not to be, and it helped for a moment and then the guilt came back.
The constant questions too about why in the world she didn't make it. Why did she live for 4.5 mos only to die? Why did I leave her the last night I did? Why when my husband texted me the night before she died and asked if I thought he should stay since she wasn't going to sleep or leave since it was getting late, did I tell him I was sure she'd be fine if he wanted to head home? Why didn't I tell him to just stay till she fell asleep? Why do some babies with even worse odds than her make it and she didn't? Why couldn't they get her PPHN to ever get any better than it had? Why wasn't anyone at all concerened with her completely unchanged ECHO's from the time she came off ECMO until she died?
These are all true questions and guilt that I have felt over the last 10 months and they are all normal and ok. The hardest part of them though, is knowing that there is nothing to be guilty over. Nothing at all. Things happen and what happened to Grace was totally out of my control, the plan for her life was the same whether or not I drank coffee during my pregnancy. The plan was the same whether or not we knew she had CDH. It was never my plan and I do know that. If at any point I had done something intentionally to hurt her, then there should be guilt but I did not.
The questions, well they aren't for me to have answered. I have for the most part totally accepted that I really may never understand any of it, and that's ok. I'm not meant to.
So, don't beat yourself up with the guilt and the why's. They truly help noone!
Moving on to a different subject, please check back in a few days, I have an exciting opportunity to remember my beautiful girl for her birthday next month for anyone who wants to help other CDH families!  Details to follow!