Monday, April 24, 2006


I got Elizabeth down for a nap without any fight. Before Drew was born, it was a daily struggle but since he has died, she's been going down very easily.

She and I went to my doctor this morning for my check-up. It was hard to sit there in the waiting room with other pregnant women. I'm happy for everyone expecting but it still hurts to see them and know that I should be holding Drew in my arms. But that's my issue to overcome and I know that it will take time.

I think that E. freaked a preganant woman out though. She was asking if we were going to listen to Baby Drew's heart (NST) and I told her no, we were going to make sure that Mommy was getting better. She looked at me for a second and very loudly (that's the only volume she has) said, "Drew's heart stopped beating. He's dead now. He's gone." I knew to expect incidents like this, we were given a great book on how to explain death to a 2.5 year old and how they might react and talking about death seemingly inappropriately is pretty normal. I hope it didn't scare the woman too bad.

All of the staff knew about Drew's death, Drew's surgeon had called and let them know. I did pretty good, only crying once when I was talking to the nurse that had cared for me and Drew. She asked me if I wanted to hold off on my exam until, well, whenever I was ready. I decided not to do that, just get it over with. Things with me are looking ok. I've lost 35 lbs.; I gained 30 with Drew so I'm down 5 from where I started. My incision is almost completely healed. At least I got through that with no drainage, infection or anything, just some residual pain and numbness.

I spoke to Dr. Stanley about future pregnancies. Actually, he brought it up because even though my arms are so empty and I long to hold my baby, I'm not even to the point of seriously thinking about more children. He just basically told me that chances are very, very good that any future children Raymond and I have will not have CDH. He would want a call the instant I discovered that I was pregnant so that testing could start early and depending on what tests showed, I could decide whether or not I wanted to remain under the care of a perinatologist or go back to my regular OB. But like I said, right now that is a moot point.

It was also bittersweet to pay our portion of the bill for Dr. Stanley's services for delivering Drew. Something as small as that made me almost burst into tears, luckily Elizabeth burst out with, "I have hair again," when that feeling overcame me and made us all laugh. Why she said that, I have no clue.

We then came home and Elizabeth, on her own, said, "Let's go to the cemetary." So we did. I looked at headstones because Raymond and I are now trying to decide on what to do for Drew's. When I told Elizabeth to come say good bye to Baby Drew, she said, "Bye bye Baby Drew, Buggie loves you," then she looked at me and said, "Drew's cold." I had to get out of there fast when she said that or I was going to completely lose it and I was crying badly enough already.

We then went to Hobby Lobby to get some stuff to complete and mount the casts that we had done of Drew's hands and feet. Here they are:

I was going to make copies for the grandparents by using these as the moulds but I can't do it. If something happened to these, I would be devastated. They are all that we have of his body that we can touch and hold. That sounds really creepy now that I re-read it but that's how I feel. It's something to hold onto other than his stuffed animals and blankets.

We also have his blood pressure cuff, ET (vent) tube, part of his central line, his termometer, etc. We came home with a lot of his medical stuff but that's not the same as his little hands and feet.

I finally called the Ft. Worth Milk Bank today. I don't think that I've mentioned this here but I'm donating all of the milk that I pumped for Drew to the milk bank so that other babies can use it. Goodness knows that there is plenty since he didn't get to eat more than about 10 cc's. I'll go have my blood test later this week or next week (to prove that I'm healthy) and OU is going to ship it all to Ft. Worth and they will pasturize it and send it all over the country to babies in need so my pumping wasn't for nothing. That makes me feel good because I had a pretty hard time bonding with that damn pump even though it is a great pump and probably my best friend for almost 6 weeks--every 2 hours or so.

I do have another gripe aside from there being virtually no research done on CDH. Why is it that everyone assumes that if a baby is in the NICU they are a preemie?! Yes, *most* babies in there are preemies--Drew had a roommate that weighed right at 1 lb. at one point but he was doing better than Drew. I was in there once when his mother was and overheard her say something along the lines of, "Why is *that* baby in here? He's not a preemie." The nurse quietly told her that Drew was very sick, much moreso than the other babies there. Don't get me wrong, those little babies need all the help they can get and are fortunte that there is ongoing research for their conditions and chances are good that they will overcome many of their obstacles. I'm happy about that but I'm bitter about the lack of research for CDH and the pervasive attitude that only preemies should be in the NICU.

I heard this a couple of times from Drew's nurses, "Your baby is by far the largest one here but he's also the most critical." It's not only preemies that are sick and I got to see and hear many happy parents of preemies talk of taking thier babies home. I heard one mother exuberantly exclaim that they were going to take their baby home in a few days while I was in the hall preparing for Drew's death on Easter Sunday. *sigh* I can't be upset about that though, it does no good and I'm glad that other families were getting to take their babies home but dammit, why couldn't WE?

I had ordered some books for Drew a few weeks ago and they just came in the mail. I'll think I'm doing ok until something like that happens. These books were going to be just for him, for me to read to him and now he's gone.

We also got a beautiful card in today's mail from Drew's nurses. They included a gift card to a nursery so that we can plant something in Drew's memory. What a special group of people. I'm just in tears because of their geneoristy and kindness. They wrote that Drew will always have a special place in their hearts.

Please continue to pray for all of the other families dealing with CDH. I just read Lauren's blog (Avery's mommy) and she is so eloquent. Reading her words is almost as if I'm reading my own; we're having the same emotions. I got a shiver when I read that she played Josh Grobin's "You Raise Me Up" at Avery's funeral. That was the song that I had played at Drew's funeral (Raymond chose Creed, "With Arms Wide Open").

I think I just heard Elizabeth calling for me, she must be awake. :) Back to the fun life of being 2.5.


April said...

The molds are so adorable. I'm glad you were able to make them and thank you for sharing.

Anonymous said...

I am sitting here crying just wishing there was something I could say or do to make your pain go away! I know there isn't but if there was I would do it! I am so sorry! I can not imagine what a difficult time this is for you and your family right now. Thank God for your little Elizabeth though! She sounds like such a beacon of light during the awful storm your family is going through!

I love the molds too. And Drew's final resting place is absolutely gorgeous. What a peaceful place you chose! Just beautiful!

Hugs and prayers,

Emma said...

omg those moulds are amazing, there REALLY needs to be more research into CDH, I had never heard of the condition, I only knew a friend who had his organs in his chest cavity, but never knew the term CDH or the facts about it. Perhaps we can help set up something online? You are so right about the NICU thing, cause it is used alot for preemies people assume only preemies go there, but that's not the case. Callum was there with the chest drain and CPAP and things, and I remember hearing a few comments on HIM being 'too big' to be in NICU from other parents, awareness on CDH is a MUST, and if there's anything I can do from this side of the 'pond' then let me know ok.

Still praying for you, and reading updates on you/ Ellie bug, OMG that is sooooooo cute what she said...she's adorable, what a bright little girl you have there. I hope she loves her NEMO shirts and they cheer her up a lil bit :)

Love and hugs, Emma.

Anonymous said...

Drew's moulds are so precious.



Anonymous said...

After following Drew's story and crying each and every day...I finally got the nerve to just write to you although nothing I say will make you feel better! I'm 23 years old...have a son who's 5 months old. I guess it hits me very hard b/c I do have a baby and can't imagine anything happening to him. This didn't happen to my son and I cry every time I log on, everytime I hear a certain song that reminds me of Drew, everytime I just THINK about him. The molds you had made of Drew's hands and feet are sooo precious! Something I know I would do b/c it's a part of him...and I'm glad you thought of it. You will always have a piece of Drew with you, thats incredible! I don't know what else to say. I'm praying for you every night, hoping you can find some peace of mind. Elizabeth is a blessing~ without her it would be tougher so thank God (if you believe) for that little gift!
I have such a lump in my throat! Wishing this all was a dream...and that you could be with your baby! I'll pray for you each and everyday! Good luck to you and your thoughts will always be with you! I'm so mad at myself for not writing what I feel but it hurts! And I know you're already hurting enough! Take care of yourself and your family! Many hugs and kisses!
<3 Lissette