Me...get an AWARD???

WOW!! Thanks Lisa! I have been very reflective haven't I! Thanks for acknowledging me!! And thanks Corrie, for acknowledging Lisa! This could go on all day!

Anyway...this means a lot to me!! THANK YOU!

So now I need to nominate someone! After much deliberation...

Amy, is one of my very favorite people. I love reading of her adventures. I have nominated her, because I want her to know how much I love her, and how much I appreciate her friendship, and support!

Reflux and Scrapbooking

Emma had her follow-up. I was SO nervous. But Tuesday, she brought home Rumplebear. The class bear. He comes home with each child a few times during the year, and he has a journal, to write about his adventures. So we took him to the hospital. He even got his own ultrasound! It was so nice having him with us!

Her nuclear cystogram, was kind of a nightmare. She did NOT want the catheter. Who does? But did ok! Then when it was time to take it out, and "go" on her own, she FREAKED OUT. Screaming and crying. She held it, for like 8 minutes. BUT...it was kind of good. It proved...HER REFLUX IS GONE!!!!!!!!! WOO HOO!!! Even with her holding it, it never went back up...YIPPEE!! BUT...she has a UTI. The night before, she was crying that her bladder hurt. They always send some to the lab, when they do the cystogram, and sure enough, there was bacteria. She is doing better now! The doctor said, 2/3 of kids that have this surgery, will still get bladder infections or UTI's. It just won't hurt her kidneys now. And...we never have to go back again. Of course, if she has problems, ya...but as of right now...she's done! Cool huh...

I also had to make a scrapbook page for Emma's class. Like an "about me" page, for a class scrapbook. This was my first attempt at digital scrapbooking. What do you think? Oh...I'm looking for praise and accolades... *grin*

Let's do a One Eighty...

Sorry about making everyone cry. I just have to blog what's on my heart. And that was... BIG time yesterday.

ANYWAY....

I took Emma and Jack on a bike ride today! I know...HOLY CRAP! My legs are like spaghetti, but we had a great time, at the little park we rode to. Here are some pictures...some...you know me... There are pictures of the bike, and me on it, as proof!! *rolling eyes*

I got some cute video too! There are two parts to the swinging. He was so cute!





Then...on the ride home, Emma took video. OH MY HECK...it's too funny. Shows her tenaciousness... It's 4 min 24 sec. long, so just follow this link... It's hysterical.

And thanks for all the support, and great comments! You guys ROCK!!!

Remembering what could have been...

So I came across Jack's birth plan. Someone on one of my support groups is going through what we went through, so I sent it to her.

I've been really thinking about that time. Mostly because of the speaking in my friend's class. And now reliving it through this mom. It's been kind of sobering. To look back on it. When I was looking for the birth plan, I found an email Steve had sent to the Funeral Association. I can't believe what went on in that conversation. It talked about how funeral homes don't charge for services for infants under one. But the do charge for "product". So if we wanted to hand make a casket, we could. It talked about cremation, and how she was going to send us a pamphlet on how LDS church leaders felt about it. It talked about how Steve had looked into how much burial plots were, at the cemetery a few blocks from our house. I don't think I ever talked about that before. It's humbling to share it now.

I also wanted to share what my birth plan said. Here are some excerpts, I'm leaving out the "details", other medical things, that are irrelevant to the feelings.

We would like this day is to be a celebration, regardless of outcome. Our beloved baby has been diagnosed with Semi lobar Holoprosencephaly, among other things. We are expecting him to live, but we also know that he may not. If that is to be, see pg. 2 of this birth plan. Please, when you speak to us, be up beat. Please don't talk about Jackson not surviving.

~We would like the OR staff to be upbeat as well. Again we are expecting him to live, please join us.

Here is pg 2:

In the event it looks like he’s not going to make it:

Please call our baby by his name, Jackson. This is our child, whom we love deeply. This love compels us to revere and treasure every moment of our baby’s life to its fullest natural extent. Your compassion and understanding during this bittersweet and difficult time are appreciated deeply. We believe that the memories of our actions during this sacred time with him will later console us.

We understand that after the birth, situations may arise that were not anticipated and decisions will need to be made. We want every measure taken to sustain his life. But if he is not doing well, we will listen to the advice Neonatolgist, and NICU team. We simply ask you to keep us informed so we can participate in the decisions as to what is best for Jackson; that no intervention be taken without our approval, other than what is outlined above. We trust you will respect our wishes.

After our baby is born, we ask that he be wiped, suctioned (if indicated), wrapped in a blanket and, handed to the nurse. Please hand Jackson first to Steven, who will bring him to me, as we wish to cuddle our baby immediately. We ask that vital signs, weight, medications and labs be postponed, if possible.

If Jackson has fewer problems than expected, please see pg 1 and discuss all possible testing/treatment options with us.

Other than routine post- delivery care, we wish for private time with our baby. We will discuss any exceptions that should be made.

We would like Jackson to be blessed by Steven ASAP.

Memorial / funeral plans have been made for Jackson, through Seren-i-care.

We wish to hold Jackson as he is dying or has died and want to keep his precious little body with us as long as possible. We would like to bathe and dress him. We have an outfit and a burial garment.

We would like to keep the following items as keepsakes: lock of hair, ID bracelet, crib card, hand and foot molds, birth certificate, weight card, hat/blanket/clothes, family hand prints, and photographs- color and black and white.

Please give instructions to Jenny on comfort measures for breast engorgement. (If you don't know, your milk comes in, whether you breastfeed or not, or if your baby dies. So yucky.)

Regarding our other children, we will decide what to do at the appropriate time.

We want an autopsy.

We would like Jackson to be an organ donor.

Thank you so much for helping us to make this bittersweet time more bearable.

I just can't believe this ever occurred. I look at him now, and can't believe we had to even type the above words out. I will admit, I often forget. I think it's a defense mechanism. I really don't know how we got through it. We just did. We had faith, and support, and love, from places and people we never thought we would.

While I am grateful for the experience, I never want to go through it again, and it's hard to watch other people go through it. I just hope I can be as supportive to them , as everyone was to us.

The Teachings of Jack

I have this friend. Some of you know her. She's amazing, and bossy. She has been so excited about this conference. Her youngest is considered Deafblind. This conference was for parents of kids who are Deafblind. At one point during the day on Friday, she was unsure her husband was going to make it, and invited me to go with her. At the last minute he was able to go, but another friend of ours, husband wasn't. So Lisa called me, and said...and I quote, "OK, we're getting started, you better hurry... see you in a minute." I was still unsure about going. It had been a VERY long day for me, and I was tired. AND...my son is not deafblind, so I was worried about not fitting in, so to speak. I could not have been more wrong.

I went, mostly to get Lisa off my back, ( I told you...she's a bossy one) and had such a wonderful time, and learned SO much in the 3 hours I was there.

They showed this movie, "The Teachings of Jon". This is just the trailer, but VERY powerful.



Jack reminds me so much of Jon. The way he communicates, but most importantly, the way he loves, and the way he teaches us. Jack has had a profound affect on us, and so many people around us.

At the conference, they encouraged everyone to think about, and write down, the things they have learned from their child. I've been thinking about it ever since. He has taught us SO much, I'm hope I can put them into sentences.

1) The first thing he ever taught me was to believe in him. He wouldn't be with us today, if I hadn't.

2) That I'm stronger than I think. I NEVER would have thought I could go through an impending doom pregnancy. Or handing him off to an anesthesiologist. Six times. Or anything really. I have HAD to find my strength, but I'll tell you, I sure found it, and I'm still finding it, everytime something new happens.

3) Support groups are my life line. I really don't know what I'd do without them.They are all listed on over on the right. It's so nice to be able to tell them how I feel, and they get it! Or if I have a question, someone ALWAYS has an answer. They are happy to share in my trials, and triumphs. I have made the most wonderful friends from these groups. For them alone; I am thankful for Jack.

4) I've learned a new definition of beauty. I look back at pictures, and sometimes, I'm a little shocked. I notice how big his head was. How wide his cleft was. How flat his nose... is! I honestly never saw any of those things. He was and is perfect.

5) My kids have learned so much. And their friends. I love that Jack will be the boy their friends talk about when they get older. "I had a friend whose little brother who had a cleft lip...or hydrocephalus...or wasn't supposed to live." I love that my kids have gotten to know other kids with disabilities. The two conferences we have been able to go as a family, have truly changed our lives. If only to have the kids meet other kids like them, or Jack. Even better, kids who are more severe than Jack.

6) I've learned so much from other parents. Being in a room full of parents, going through some of the same things, is amazing. Mostly, that we are normal, and not alone!!!

7) True joy!

8) Miracles still happen.

I'm so glad Lisa "made" me go. I met some wonderful people, and I'm so thankful for the challenge to write down what having Jack in our family has taught us. There are of course more, and most of the things I write about here...but these are things that are in my heart tonight!