Wednesday, April 26, 2006

Just have to shake my head...

and be thankful that we have pretty good insurance otherwise we'd be so screwed. I'm now so glad that our insurance policy changed in January from HMO ($1 million lifetime limit per person) to POS (no lifetime limit on coverage). I'll pay the higher copays and deductibles with a huge freaking smile.

OU Medical Center has been sending us letters letting us know what claims they have submitted to our insurance company. These letters tell us that, many times, insurance companies will need additional information in order to correctly process these claims and we should probably call our insurance to see if they need anything from us. In other words, call your insurance company so that they (OU) can be paid in a timely manner. No problem, I just ignore the letters. :D

They've all been for me so far; my 4 day hospital stay, surgery, anesthesia, etc. The one that arrived today was for Drew. It was only for the cost of his hospital room/bed and associated costs, not surgery, surgeon, neonatologist, radiologist, ultrasounds, etc. JUST for the NICU stay from March 8 through April 16. This is the point that I'm thankful for insurance (no matter how many hoops they make you jump through at times) and I just had to shake my head and chuckle. Are you ready for this?!

See why I'll pay the high deductible with a smile? I cannot imagine being burdened with this bill if we did not have insurance. Something like that would DESTROY us and most other people. Even though we are on a 90/10 plan, 10% of that is a huge amount--thank goodness for yearly out-of-pocket maximums.

I'm sure the negotiated rate is substantially lower but damn, it'll still be a ton of money. I actually can't wait to see the negotiated rate.


I told Elizabeth that she could pick out a balloon for Drew's grave today. Of course, SHE had to have a Care Bear balloon first. I figured that she would pick Elmo, Winnie the Pooh, or something along those lines. Nope, she picked out the only one out of about 50 ballons that was blue and says, "Baby Boy." How on earth did she do that?! She scares me sometimes with how perceptive and smart she is. Of course, *I* take all of the credit for THAT. :D

Some of my very good, special friends sent us the most beautiful red-leaf Japanese maple tree to plant in Drew's memory. We had one when we lived in California and just loved it, they are gorgeous trees. What a tremendous gesture in rememberance of our son, it means a lot.

The outpouring of thoughts, feelings, prayers and sympathy from everyone, even complete strangers, brings me to tears. It helps me see that Drew's life DID have an impact on people and THAT means more to me than anything.

Drew was such a special little guy, my "buddy boy." Everytime I would walk into his room in the NICU, the first thing I would say to him was, "How's my buddy boy today? Mommy loves you so very much!" I hope that he could feel how much his Daddy and I loved him. And his sister, grandparents, aunts and uncles, the list goes on and on. As my husband is fond of saying, "Everybody loves Raymond." :) I guess it still fits for Drew since technically, his name is Raymond.

When I was returning dishes to various neighbors today (they were all so sweet and brought us wonderful meals), I found out that one couple had lost their son when he was 6 months old. They are an older couple and the husband said, with tears in his eyes after all these years, that his two girls were good enough for him but that he still misses his son everyday of his life. A man my mother works with told her the same thing--he had lost his child 23 years ago. Our aunt and uncle lost their only child a little over 5 years ago. Brandon was 18 years old, much too young to leave us; I know I've said it here before but they are such a comfort and help with what we are going through right now. It saddens me that losing a child happens more often than one would think.

In her blog, Lauren talks about Avery's brain damage and hoping that Avery didn't know what was happening to her. But then if Avery didn't know what was happening, she wouldn't have known her mother and the rest of her family. I completely "get" that.

I just sobbed reading that because I know in my heart that Drew suffered brain damage. We could have dealt with brain damage, didn't change the way we felt about our son one bit. No one ever said that to us outright but how could he not have at least some with oxygen saturations so low for such long periods of time? As I've said before, we are not stupid people. When I asked about it, I was told that it would be difficult to tell if there were any brain damage and the extent of any until later. As in when Drew woke up and as he grew older. Well, he never woke up after Sunday, April 9. Part of it was going on the oscillator and the paralyzing meds. I don't know if he'd stayed on his conventional vent if he would have ever woken up again. It tears me up that we left him on the 9th not knowing that we'd never see him awake again.

I hope to God that he did not suffer. I know that he was on a ton of pain meds but he was so awake and aware at times. He responded to me, Raymond, and Elizabeth. He'd just look all around and he'd smile at us every so often. Or he'd get mad at us and do his silent cry. He would get the hiccups and have a startled look on his face with each hitch--it was so cute. We getting ready to leave his room one morning and he woke up before we left. Well, I *hated* leaving when he was awake. Raymond leaned over and told him that we had to go. Drew scrunched up his face and "cried." So we stayed. We went through that process a few times before he went to sleep and we left. On some level, I have to believe that he knew we were leaving him and he didn't want us to.

Don't let anyone every tell you that infants are fragile. They are so much tougher than adults. They can withstand much more and heal so much better than an adult. It's truly an amazing thing to see what some babies go through and come through just wonderfully. An adult dealing with what Drew and the other CDH babies have would never survive. One of Drew's nurses told us that they had tried ECMO on two adults at OU. It failed in both cases; in one they could not even insert the cannulas effectively, the arteries and veins just fell apart. Drew was on ECMO 15 days, his pulmonary hypertension improved, and he came off of it like a champ (simply put, anyway). Not possible for an adult.

Another good friend of mine sent me the following and the words are so true:


Go ahead and mention my child, The one that died, you know.
Don't worry about hurting me further. The depth of my pain doesn't show.
Don't worry about making me cry. I'm already crying inside.
Help me to heal by releasing The tears that I try to hide.
I'm hurt when you just keep silent, Pretending he didn't exist.
I'd rather you mention my child, Knowing that he has been missed.
You asked me how I was doing. I say "pretty good" or "fine".
But healing is something ongoing. I feel it will take a lifetime.

There is a lot of positive news for Baby Jackson, he seems to be doing so well even with an infection. Please keep he and his parents, Kimberly and Adam, in your thoughts.

Keep cheering for Baby Sofia, they have been able to wean a lot of her medication and she might lose a chest tube on Friday! Catherine and Ivan sound as if they are doing well with everything, as well as a parent can, anyway.

Lauren is taking off for a visit to Florida, I hope that she has a great time, she certainly deserves it. If you want to know how I'm feeling, read her blog, she's so good at expressing her feelings. She has the most beautiful pictures of Avery over there; I know that Avery and Drew have become fast friends wherever they may be.

Jenn is getting so close to having Audrey!! Please pray for a safe delivery and for Miss Audrey--her fight is about to begin. Jenn's little Ethan sounds so much like Elizabeth.


kctwinmommy said...

I have now typed something out 4 times, and it never seems the right thing to say! I just can't imagine all the difficult tasks you are still having to go through. With taking care of Elizabeth, recovering from Drew's death, and then the bills! I have seen some big ones, but I couldn't believe that $800,000!! I'm very happy to hear that your insurance was in good order, because you're right, something like that could absolutely ruin most people.

I just wanted you to know that I think of you and Drew, and I try to remember your pain when my kids are being terrible. I try to remember that I get to have that, while you don't with Drew. You're right, all of the crap really doesn't matter in life, there's too many other important things to deal with. And reading what you have to go through with regards to his baby book, it just hurts to read that. They really should come out with other baby books, that you still want to record their life in, but that recognizes the loss of the baby. It's those smaller things that I would never think about, things I often take for granted.

Lots of (((((((HUGS)))))))

Cindy, Kira & Christian
(And Chuck too, my DH. He started reading your blog too and couldn't come to bed the other night it touched him so much!)

Donna and Blake said...

(((HUGS))) Your family is in my thoughts and prayers!

Anonymous said...

Thank you so much for keeping this blog! I can't explain it but this has opened up my eyes in so many ways. Whenever my husband or my daughter are getting on my nerves I remember what you are going through and realize that everything I have gone through is so trivial in comparison!

Drew was so blessed to have you as a mommy and I have no doubt that he is happy now and smiling down on you!

I truly don't think I will ever have the right words to say b/c I just can't imagine all of the difficulties you are still facing and how hard this is for you and your family. I just wanted to once again let you know that I think of you and your family often and am often moved to tears after reading your blog. You are very good at putting your feelings into words. You have led me to other CDH babies and their families and I am praying for them as well! Thank you for that! You will continue to be in my thoughts and prayers. I think that God is very blessed to have Drew with him now as he is obviously a very special boy!

Hugs and prayers!

Shawna said...

Once again your words have brought me to tears. I think you do a wonderful job of expressing your feelings honestly. Maybe not as openly as you'd like, but believe me, the feelings come through sweetie! I'm so glad that you liked that poem, it still makes me cry when I read it.
I do have to tell you, I had a dream about meeting you last night. How weird is that? I'll have to try to figure out a way to get down there sometime. :)
That bill of Drew's is CRAZY!! I can't believe the outrageous prices hospitals charge. Thank God for insurance! Wanted to pop in and send you more (((HUGS))). I'll call you again soon.

Much love,
Shawna and boys

Lynn said...

Hi Jana,

I have been reading your blog for a while now, I am so impressed with you, how you have handled things and the courage you must be giving to other families of CDH babies. I was so sorry to hear of Drew passing away he was such a special little boy with a very special family.
I am a cousin of Catherines and that is how I started reading your blog. Your family are still in my prayers and always will be.
love to you all.

Anonymous said...

Jana, your poem "Remembering" is soooo beautiful. Thanks for sharing.


Carola Thornton said...

Take a look at Eli's Care Bear Coloring Book that she took with her to the funeral. While I was watching her she wanted to color in her care bear book so I got everything out then her and I and Audrey were sitting at the table coloring. We would talk about what color to make the care bears her answer was 'blue', what color is the sun 'blue', then she saw the stars on one of the pages and she got excited and said 'color them blue'. She would turn and look at the TV/Monitor of the service and pause for a second or two and then turn and color 'blue'.
I don't think Audrey understood, but Eli knew exactly what she was doing. She would pick up another crayon for a couple of strokes then it was back to 'blue'.
I just wanted to share that with you.


Carola Thornton said...


When reading your statement about talking to Drew when you entered his room, it reminded me of something. When I was 11 years old I was in the hospital getting my tonsils removed
(that was a long long time ago). Because of complications I was in and out of a mild coma state and lost memory of 3 days except.....I remember alot of things. My parents said that I was asleep with my eyes closed all the time but I remember hearing my mom's voice talking to me everytime she came into the room. I remember my dad talking to me and to others and I felt so calm and safe. Later, my parents were shocked when I started telling them what they said to me when they thought I was not able to hear them.
I know Drew heard you and Raymond everytime you were there, and I know it made him feel safe and loved.