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?!
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$800,591.45

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:

REMEMBERING

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.