Sunday, July 02, 2006

Oh hell

This could get long. That's what having 4 hours to think while driving through what has to be the most boring landscape can do. I had a lot of time to think of things that I want to say and you are lucky enough to get to read about them. That is, if I can remember everything that I thought of!

Let's see...thank you to everyone who has asked about my dad and sent such positive comments. He seems to be doing very well. He's in quite a bit of pain but he's doing great with his rehab exercises and he got his staples taken out on Friday. He even felt good enough to do his special computer time with Elizabeth before we left! (They like to play at Sesame Workshop--Sesame Street.)

He's got to be the best patient in the world. He doesn't complain at all; you have to ASK him if he needs anything. I enjoyed helping him and just spending time with he and my mother. I think he's going to be great when he's finally healed up. Please continue to keep him in your thoughts.

My mom always puts me to work when we go out there! Yesterday she had me digging holes and planting flowers. E. and I escaped today before she could get to us again!

Yesterday I was ready to give Elizabeth away to anyone that wanted her. She was HORRIBLE! Luckily she got over most of it today. She was great on the drive home. She was so happy to see her Daddy (and he to see her). She just hugged him for a long time when we got home. Made me tear up a little bit. I was so glad to see Raymond; I miss him so much when we're apart. It's amazing how love can grow over the years. I just like being in the same room with him. :)

We are doing no more traveling for a while. I'm tired. Anyone who wants to see us can come visit us now! :P I guess that's not exactly true since we're going to my in-laws on Tuesday for the Fourth but they are only about an hour away (in their new, GORGEOUS house). That will be a lot of fun; I haven't seen them in a while and look forward to their company.

While we were in Texas, we saw my friend Tina and her August 2003 baby Kaylee. The girls had so much fun feeding the ducks and playing at the park. It was great to see them and spend time with them; it helped me relax a little bit and Kaylee is so darn sweet! She just ran up to me a couple of times and gave me great big hugs! E. was a bit moody but I think the girls had fun despite that.

My friend Ivy and her husband Brandon welcomed their second daughter, Sasha, in mid-June. Ivy says that she's even more easy going than Bella and I say that's not fair! I have a handful and Ivy gets these easy, laid back girls! She said that Sasha is Bella's little twin. :) I wanted to see them while I was in TX but I was getting over a cold and I didn't want to be around a newborn while still sick. Maybe next time! And E. was upset that she didn't get to see Bella but I tried to explain to her why.

I mentioned in my last post that we got to see my Aunt Cathy and Uncle Vern who were out from Arizona. On Friday night, we went to my Grandma's for a family dinner. It was so nice to see everyone. A lot of my cousins and aunts and uncles were there; I really do enjoy spending time with all of them. Shari, the tattoo is beautiful!! Uncle Alan, E. knows that you like her now. We had a talk about that, hehe!

My cousin Adriane has 2 of the greatest kids I've ever met, Avery and Nick. E. idolizes Avery and Avery is so sweet to play with E. They were very cute together! Avery, she's still talking about you and wants you to come visit and see her room! She told me that she wants a little toy car, "Just like cousin Nick's!" so that she can throw it on top of Great-Grandma Lily's carport!

I finally got to meet my cousin Amanda's baby girl Lillian. Oh my gosh! She is ADORABLE!!! Her smile just melted my heart. And all of the pictures of baby Jayden (cousin Julie's daughter) were precious. Our family has a tendancy to produce girls at a much higher rate than boys!

I do ok around baby girls right now. It's really just boys that get to me. Doesn't matter their age because I can picture Drew at any age. I have a detailed image in my mind of what he would look like at each age. Let me tell you, he would have been so stinking cute! I think that I've said this before but I'm going to say it again. All we ever cared about was having a healthy baby. But I never knew how much I wanted a son until Drew arrived. I'm just going to stop there because I'm crying now. God, I wanted my baby boy so much.

We also got to see my Aunt Carla who came to town. That was so great! E. made a new friend and talked about "my Aunt Carla" much of the way home. It doesn't hurt that Carla's about the same height as E., haha!

The book donations are going GREAT! Thank you so much to everyone who has donated! I will be working on thank you notes this week. I cannot express how much this means to me. You are helping do so much for other families who suffer the loss of their children. I'm moved to tears at how great you all are to help me with this.

My dad and I were talking today and he related something that he had heard a Psychiatrist say one time. The guy said that humans have their basic values and morals and such in place by the age of 12 and they usually do not change. UNLESS the person suffers a traumatic event later in life such as the death of a child. That will cause them to reevaluate their beliefs on certain matters. I can completely agree with this. I have never done as much self-examination in my life as I have since Drew died. Many of my basic beliefs are now totally different (won't go into most of them as they are intensely personal) but I do believe that these changes have been for the better. I'm a much softer and kinder person now. I'm not near as self-centered as I used to be. I'm a better parent because my entire philosophy about parenting has shifted. I could go on and on. I just thought that was interesting and something that I can totally agree with.

I'm ashamed to admit that I didn't keep up with what I normally do while we were gone. I just spent a couple of hours checking up on all of the other CDH families that are so near to my heart and there is good news and bad news.

Audrey will probably get to come home soon! Please keep the Miller family in your thoughts and hope that Audrey ups her feeds so that she will be home with her parents and brothers very soon.

Jackson reherniated which means the gor-tex patch came unstitched and his organs started moving into the chest again. He had repair surgery and seems to be doing well. They are going to start trials to get him off his vent again soon. Please hope that all goes well. I feel a special affinity for Kimberly and Adam as Jackson and Drew were born so close together and their cases were so similiar in many ways.

Baby Mert was scheduled for birth tomorrow but Aytekin and Emel voiced their concerns about such an early induction and their doctors listened! I gather that the plan is now to wait until closer to July 15 (EDD July 18) for induction. The longer that Baby Mert can stay in Mommy, the better. Keep this family in your thoughts, they are just so darn sweet and strong.

Baby Joseph...well, you should read Carole's blog. My heart is breaking for them right now and I can understand the emotions that Carole is feeling and the difficulties that she's facing in telling her other children about the reality of the situation. The short version is that Joseph's hernia is right-sided, not left-sided as they were initially told. Right-sided CDH tends to be more serious. The doctors speculate that Joseph only has a total of 10% lung capacity at this point and suspect chromosomal abnormalities. Carole is facing an amniocentesis to gain additional information and is understandably nervous about the procedure. At this point, Joseph is facing a procedure known as exit to ECMO where he is hooked up to the ECMO machine while still connected to Carole via the umbilical cord. They also want to do surgery ASAP which is risky while on ECMO and the blood thinners. Carole faces many more tests before Joseph arrives, please keep their family in your thoughts and prayers.

Please keep Parker's parents, Jessica and Ashley, in your thoughts as well. Jessica is such a dear woman and is having understandable difficulty with some things right now.

Those are just a few stories of the CDH babies and families out there. I will urge you again to read about every single one of them, survivors and angels as they are all such sources of inspiration. Each child and family holds a special place in my heart and always will. We need to come up with better treatment options for this birth defect and I feel sure that we will in the future.

The website that I put up, A Rainbow of Hope: CDH Awareness, is generating a lot of response! I'm so happy and excited! I've gotten some wonderful comments and suggestions that I take very seriously and am always open to more. I'm working on more stuff in conjunction with it but I'm going to play catch-up this week. I have too much stuff in the works right now. Who said being a stay-at-home mom wasn't a full-time job?! That along with all of my other little projects are exhausting me! But I love it. Creating this website has helped me come to terms with many aspects of Drew's death.

Today is special for a couple of reasons. It's my Aunt Tama and Uncle Alan's 20th wedding anniversary. Happy Anniversary guys!

Today would also have been my grandmother's 81st birthday. August 8 will be 16 years that she's been gone. I was her only grandchild and spent much of my childhood with her. We were so close. I miss her like crazy every single day. I know that she's out there taking care of my buddy boy along with all of our other deceased relatives. She loved kids and I just wish that she could have lived to see mine. She and E. would have gotten along fabulously!! I miss you Granny.

Please keep Sasha and Jayden in your thoughts and prayers. I don't want to go into detail but I would appreciate what you can spare for these beautiful girls.

Ok, I'll stop now even though I haven't written out half of what I thought of on the way home. I'm tired and I'm going to bed soon.