Sunday, April 23, 2006

Random thoughts

Well, life gets back to "normal" for our family tomorrow--Raymond's back to working on-site and Elizabeth and I are alone at home. Part of me is looking forward to it and the other part of me is scared. I don't know why I'm scared, but I am. There are about a million things that need to be done: thank you cards, a thorough house cleaning, etc. If you haven't seen Drew's obituary, there are two online; they can be found at the following links: The Oklahoman and The Amarillo Globe News. You might have to register (free) to see them.

I go see my perinatologist tomorrow for my 7 week check-up. That's not going to be easy. I got pretty close to one of his nurses since I saw them twice a week for over 2 months. I don't think they know that Drew is gone. I don't know if I can face the questions and the looks of sympathy. That and I have to have a physical exam. :( I still have some recovering to do from the c-section. How bad does THAT suck?! I still feel some pain and numbness from when Drew was born and now he's gone. I really thought about canceling but have decided that it has to be done so I'm just going to get it over with.

I got Drew some flowers today, just from Mommy, and put them on his grave. I was there around 3:29 p.m., the time he died a week ago. The funny thing is that I had not planned it that way. I was just going to the store to pick a few things up and decided that I wanted to go to the cemetary. The picture of his grave and funeral can be found by following this link. The password is drew2006. It's very nice and peaceful there but it's still a horrible place to be. :(

I have not decided whether or not I am going to share pictures of Drew's last day. They are pretty personal.

Elizabeth is a joy, she's keeping us laughing. My mother said that E. exclaimed, "Look at all those grapes (graves)!" when we got to the cemetary on Thursday. Then on Saturday, she made me and Raymond laugh when she said that, "Baby Drew need batteries." When her toys stop working, the batteries die and new ones make them work again. If only it were that easy. To be so innocent again...

We went to a barbeque last night. I wasn't going to go but I made myself; as I told my mother, if I'm left to my own devices, I'll become a hermit and not do well. We had a very nice time (thanks again, Cos!). It was at a beautiful home in the country and there was a horse that Elizabeth really liked looking at. But she didn't want to touch it, just LOOK. :D

I know that it's hard to find adequate words to say to us right now. There are no magical "right" words. Just don't say something stupid or totally insensitive (like, "At least you didn't REALLY get to know him," yes, someone said something along those lines to Raymond) and everything will be ok. :)

Now to step on my soapbox. I'm going to borrow something from Jenn's blog (link), I hope that she won't mind because it sums up my feelings very well:

"Real quick, for those of following baby Sofia--did you see that there are FOUR CDH babies in San Antonio right now? 2 were born on the same day for goodness sakes! 2 or 3 med professionals have said this to me before~ that they (CDH babies) seem to come in waves, but goodness that seems to be a lot. There were 5 at Sick Kids where Avery was. My point is this, no one ever seems to have heard about CDH (I never had, had you?) yet, the occurrence is about the same at Cystic Fibrosis (CF is 1 in 3500 and CDH varies from 1 in 2500 - 5000, depending on your source) and EVERYONE has at least heard of CF; it has a foundation, researchers dedicated to it, etc etc. I was tipped off to the CF numbers by a member of an online CDH support group, her take was the difference is too many of our babies die and I'm sad to say I think she's exactly right. Would it not make sense then to have more research, try new things, figure it out!!!! UGH, it just frustrates me."

Speaking of Baby Sofia, have you seen her?! She's GORGEOUS!! She seems to be doing fairly well right now, please pray that she continues to do well and steadily improves. After reading of the restrictive NICU hours at the hospital where she is, I'm feeling very fortunate. Their NICU is closed between 6:00 a.m. and 12:00 p.m. That's crazy!

Children's closed for 2 hours a day here, from 6:30 a.m. and p.m. to 7:30 a.m. and p.m. for shift changes. Those were the only 2 hours of the day that we were not allowed in the NICU and this rule was, of course, waived last Sunday when Drew passed away. Other children (regardless of age) were also welcome in at anytime as long as they weren't creating a disturbance. I'm proud to say that we had many comments on how well Elizabeth did in there. Raymond and I were known to show up at 2:00, 3:00, 4:00 a.m. to check on Drew if we couldn't sleep or were concerned and we were always welcomed. They didn't even mind the night that I just sat there for 6 hours. So we're grateful for the access that we had to Drew; Drew's nurses just simply told us that he was our son, of course we wanted to see him whenever and it didn't bother them at all. It even got to the point that we would help with some of the simpler tasks.

Also keep Jenn and her family in your thoughts, Audrey is staying put for now (good!) but she'll be here before we know it. I know that Jenn's scared and excited at the same time.

Lauren, Avery's mother, is such a wonderful woman. Talk about strong! In the midst of her own grief, she has taken the time to e-mail me such touching and comforting words. Learning more about her and Avery is a blessing. She captures so many of my feelings right now on her blog.

There's a wonderful support group that I've found, Breath of Hope. All members have children with CDH and the words received from their members have really been helping me. They understand. Unfortunately, we have family members that understand the loss of a child as well; they are a great comfort to us and luckily live close.

Tomorrow I'm going to start trying to reply to all of the wonderful e-mails that I have recieved, please be patient with me. I'll sit down thinking that I need to reply and then I just can't but I will reply to each of you eventually!

The person who registered the star in Drew's name wishes to remain anonymous. All we can do is offer our thanks, it is such a great and touching gesture.

I have typed up Drew's last day but I don't know if I will post it.


Shawna said...

Many prayers for the newest babies born afflicted with CDH. And I really want to offer you some ((((HUGS)))) Hope you have been getting my messages, I've called 3 or 4 times. You and your family are always in my thoughts and prayers!

Anonymous said...

No thank you needed. You are more than welcome. Many ((hugs)) and prayers going out to you and your family.

Anonymous said...

Jana you are such an amazing woman!!! (((HUGS))) Elizabeth and Drew are so blessed to have you for a Mom.

Anonymous said...


Drew's story has touched me SO much. I don't even know you at all and I think of you often.
You are in my prayers!

April said...

I hope today has gone well for you. lots of (((hugs))) coming your way.