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AS I PROMISED... THE STORY OF BABY DEUCE

MOMMYOFDEUCE

August 2008

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REALIZING HOLIDAYS WILL BE HARD...

Nov 18, 2007 06:50am (EST)

I'm realizing that holidays are going to be a rough time for me to adjust to. It's been a month since Deuce Booty passed. *I smile every time I say "Deuce Booty"... I love calling him that.*

I went to my sister's birthday party last night... My older sister was there with her 5 month old... I couldn't help but think... "Deuce is supposed to be here...." He'd be 2 months and 5 days old right now. I was sitting at my mom's dining room table before we sang happy birthday. I broke down and cried.

I know its because of seeing my little niece have her spit up wiped by her mom and everyone... her getting changed into her "feetie pajamas"... Her cooing and gurgling... I never got to experience any of that. The only spit up that I watched being taken away from my son was by a nurse with a suction.

I miss my son. My poor little baby.
Needed to vent...

Patrice

Posted by MOMMYOFDEUCE | Comments: (4) | Permalink

IT'S BEEN 3 WEEKS SINCE WE LOST OUR BABY...

Nov 08, 2007 03:48pm (EST)

Sigh* It crushes me to even have a title like that. I had a hard time today. Deuce's dad and I went through our missing our boy time today. I get so sad when I see Big James hurting.. Deuce had such a strong presence in NICU... In our lives...

I took a lot of time today looking at pictures of him. The last set of pictures that I have of him were taken four days before he passed away. He had so much life in those pictures... That's why it's still so hard to accept that he has passed.

Although Deuce hadn't been to his house until we brought him home from the crematory, I totally refer to this family as a family of 5. We will ALWAYS be a family of 5. I know that he will always be my son... When I'm off doing my daily duties... riding in the car... running errands... it feels like he is here... But when I look at pictures, I feel the void.

Here are a couple of pictures that I was looking at today. One is of him trying to flip over. He was very strong... 4 weeks at the time... a preemie, at that!! already trying to flip over...

The second picture is one of my favorites... It makes me sad because i can just feel him lying against my chest. It soothes me as his mommy to see this picture. I never had the opportunity to lay him against my chest... but when I look at this picture, I can feel what it would have felt like.

It might sound strange, but it's so very true.

I miss my little baby.... I miss him so.

Photo Sharing and Video Hosting at Photobucket

Posted by MOMMYOFDEUCE | Comments: (5) | Permalink

WOW... ANOTHER ROUGH DAY. MISSING DEUCE

Oct 27, 2007 01:22pm (EST)

Big James went to work. I'm a little sad. I did however get some great hugs from my 9 and 12 year old children. I think I'm trying to stay incredibly strong, but I am having a bit of a rough day. I miss my little baby Deuce. It has only been just over a week since he passed.

I thought I was doing pretty well, but there's other things that trigger my sadness. When I receive medical bills from the hospital for him in the mail... its things like that which make my heart sink.

The thought of how we just had to file to receive his death certificate, when we haven't yet received his BIRTH certificate! This is so rough... I miss my little Deuce Booty's kicks he'd do in the hospital. The ones where he'd nearly knock his pamper off... I miss that... I miss him.

Mommy of Deuce II

Posted by MOMMYOFDEUCE | Comments: (4) | Permalink

SOME PEOPLE CAN'T UNDERSTAND...

Oct 25, 2007 04:22pm (EST)

It's so wild to me how there are definitely levels of certain understandings. It's so clear that people who have never experienced NICU or who have never had a preemie would never understand what I would ever talk about. It would be as if I were speaking a different language...

It's even more wild that I'm finding that even after having a preemie, and losing him... A person who has a preemie but has not lost a preemie, yet again would not know what I am talking about on THIS level.

I have a dear friend that I've met through my preemie experience that has lost her baby girl about 3 weeks before we lost our little Deuce... It's interesting. When we speak on the phone, its like we've known each other for years! We are able to talk freely about our little angels... Without feeling sad.

It's like, the language is so clear for us both. As if there's nothing that could be said, that could be wrong...

Anybody else, that understands this language.... Do you ever feel like that?

Posted by MOMMYOFDEUCE | Comments: (3) | Permalink

AFTER HIS PASSING...

Oct 24, 2007 01:42pm (EST)

We had to do the difficult things today. We picked his urn. I just want him home.

Many people wonder how we are holding up so well. They have to understand how much of a miracle baby we have. He has done so much for people in his short time here.

Deuce will forever be remembered... When we see the number "11", we see Deuce. The blog explains it all.. He is such an inspiration. We are lucky.

Mommy of Deuce

Posted by MOMMYOFDEUCE | Comments: (2) | Permalink

AS I PROMISED... THE STORY OF BABY DEUCE

Oct 23, 2007 05:12pm (EST)

Find out how our baby Deuce reached out to us before he was born, all the way through to after his passing. This is an amazing, TRUE story.

Originally written: October 21, 2007

As I promised, here is the special letter to you all.

April 26th was a happy day for James and I. It was confirmed that we were pregnant. We immediately knew what his name was. James just KNEW the baby was a boy! We decided to name him after him; James Seth- We’d call him “Deuce”, as he would be the second. (Deuce means “2”)

As the months went on, on occasion, I’d ask James what time it was… Or he would ask me. The time would often be--- “something”: 11.

In other words, it could be 1:11, 2:11, 3:11, 4:11, 5:11, 6:11, 7:11, 8:11, 9:11, 10:11, 11:11, or 12:11.

This happened often enough to where it was recognized! It started to happen strangely! We could be sitting and watching television, and he or I would look casually at the cable box, and it would be 8:11!!! We would be in the car and he or I would need know the time and it was and it would be 10:11!! This went on continuously… we began to see this a good 4-6 times within a day.

One of the times, James said, “This is Deuce, Deuce!” Ever since we adopted the number 11 as Deuce! Deuce means “2”… One and one is two.

This continued for months!! Every time this happened, we’d get all excited and shout, “Deuce Booty!” or “Deuce, Deuce!” And I’d rub my belly and smile.

On September 13, 2007, our Deuce Booty was removed from my belly by emergency c-section. When I woke up from surgery, I heard a baby cry. The nurse was in my room. I said drowsily, “Is that my baby?” She said, “No… That’s another woman’s baby in the room on the other side of the curtain.”

I felt so sad. I hadn’t seen my baby. I hadn’t held him. I hadn’t heard him cry. I kept asking for my son and I was being told that I’d have to wait because he was being stabilized. They were preparing to send him to a more experienced hospital that specializes in premature babies.
I felt so empty. It was only James and I and boy did we worry about our son. James couldn’t even see him. Through the rest of the day and through the night, our spirits continued to be brighter when we’d spontaneously see “something”:11.

When I was released from the hospital, and was able to begin seeing my baby boy at the new hospital, the “something”:11’s continued. By now, it was so regular to us that we’d announce it in the middle of conversation, smile, and continue on.

As you all know, Deuce did very well in the hospital. He was a trooper. If you read all the posts, it’s pretty clear. But if you are a NICU parent, or Preemie parent, you know that there are very scary moments. His first scary moment was his VAD surgery. I posted about that and it was awesome because his bedside was number 11. YAY! Before his surgery, I was at his bedside typing on my laptop. The log that I typed AFTER that surgery ended at 4:11 pm, so there- you have witnessed it. I looked at the clock, and that’s what time it was.

Deuce was then transported back to his regular hospital and we continued to spend time with him, and continued to recognize the number “11”. It was in the time, and in other random things.

On Monday, October 15th, we received a devastating call. They were preparing to transport Deuce back to the surgical hospital. They said he developed NEC and he had a perforation in his intestine. He would need surgery. I asked when they would be transporting him. They said the transport team would be on their way as soon as they received my verbal consent over the telephone. I consented.

When Deuce arrived at the hospital, the nurse explained many things to me and gave me information of his transport condition and details like visiting hours and his bedside number. That conversation devastated me even more.

Deuce’s condition there deteriorated quickly. James and I felt helpless. We couldn’t help our son. Still unable to hold him, we couldn’t protect him. We prayed, and many of you prayed as well. We had strength from all over the world for Deuce. So many people loved this miracle baby. We had our family by our side… especially our parents… and the number “11”. We soon began receiving extra doses positive energy from the number “11” as it showed up in other forms… we noticed that we’d randomly look at the clock, and it would be 5:33… we’d add up the numbers. 5+3+3 equals “11”!! We still would see it, in and out of the hospital--regularly. By now, “11” was like a part of the family. It made us smile, it gave us hope.

Note: Have you heard of, or seen the movie with Jim Carey called “The Number 23”? James and I watched it about 3 weeks ago. I will never watch it again. It was oh so similar to the same calculation of numbers, and the random visualization that we have of the number "11", but its of the number 23. In this movie the number 23 was NOT GOOD. It was the worst number in the world to the characters in the movie. It was an EXTREMELY dangerous number.

On October 17th, Deuce’s surgery was performed. It was only about a half hour. (Yeah, I know.) We were then given word that there was “nothing else they can do”. We had to decide whether or not to remove all medical treatment for our boy.

Another Note: This is the most horrible… Worst feeling in the world. I would NEVER put that on anyone.

Hours and hours went by-- our parents and “11” by our side. “It just doesn’t feel right” I kept saying. We wanted our son out of this horrible pain, but at the same time, I couldn’t sit right with the doctor’s words! I could not accept what he said to us! I had many conferences that night in the hospital with our parents, James and the Lord. I even made them arrange a second conference with some other doctor that didn’t even DO Deuce’s surgery. The others had already gone home for the night.

I called a dear friend on the phone. (You know who you are) and she gave me great advice. I felt so much better and decided what to do.

After conferencing one final time with James, I told him that I don’t want Deuce Booty in pain anymore. But, I HAD to find the answers to questions that I had. Time was an issue. I couldn’t find a gifted doctor that could make anything happen in this little time. I didn’t want him suffering as I tried. We decided to let Deuce go home.

We went into the room and I began reading the consent to remove treatment. I filled out the top half of the paper. By the time I got to the bottom I stopped. I suddenly and quietly whispered into James’ ear.

“It’s not time yet.” He put his head up and looked over at the monitor and read his heart rate. It was at 173 and his oxygen was at 92. (You do the math of each of those!) He said, “’Let’s wait.” We turned to the nurse and our parents and said, “We’re gonna wait til tomorrow.”

Our parents assured us that it was okay, and that we didn’t have to rush. We left to go back home—with smiles.

James is always on me about making sure that I eat. So, realizing that we BOTH hadn’t eaten all day, we stopped at Mc Donald’s on the way home. You know how if you order, they put a number beside each item? Even if you have added tomatoes the word tomato would have a # beside it. Our order receipt looked like this:

1 - TOMATO
1 - SHRED LETTUCE
2 - 10 MCNUGGETS MEAL (yeah the kids can eat!)
1 – DBL QTR CH MEAL (James’ food!)
1 – FILET – O – FISH MEAL (that’s mine!)
________1 – W/O CHEESE (its indented like that on the receipt)
2 – MED HI-C ORANGE
1 – MED SPRITE
1 – MED SWEET TEA

Add up our order!!! It all equals "11"!!

But WAIT-- THEEEEEERRRRREEEE’S MORE!

Deuce’s energy was so HIGH and STRONG that night that we notice more on this same receipt! We got plenty of Deuce-Deuces!! (22's) Our total after tax came up to $22.22!! We noticed IMMEDIATELY, when the cashier gave the total! Not thinking of anything, we gave thirty dollars. (a 10 and a 20 dollar bill—irrelevant!) But, our change back was $7.78!!!! Do the math! 7+7+8 equals 22!!!!! (or, Deuce-Deuce) I know this all seems strange and unbelievable, but we did keep the receipt and I will scan it and put it on this page when I get to Kinkos in the next couple days. I would not make ANY OF THIS up. This is a significant piece that we have left of Deuce.

The next morning, I woke up early and posted on the preemie community forum. I made a plea for answers. I was petrified about taking Deuce off life support and not having any answers to feel as if it was the right thing to do. You can see the post, and be led to where I posted the entire plea—On my blog there here:

http://preemie.clinicahealth.com/comments.pl?sid=07/10/18/1319251

That late morning, James’ mom called from the hospital to let us know that his condition was still quickly deteriorating. The doctor said that he didn’t think we even NEEDED a consent signed for stopping his treatment. He wasn’t sure if he’d make it through the night. We rushed up to the hospital. We checked in with James’ mom and James went to Deuce’s bedside. I couldn’t go in. James and I had a discussion that morning how I felt comfortable with the way my moments with Deuce last night were. I was afraid to go in before they were to let him go. I was afraid to stay during the process. I didn’t want any sudden changes happening, and I didn’t want to see him go through what he was about to endure.

I explained that morning, at home, to James that I was fearful of what his memories might be after being there for “that”. I love my husband very much. But he needed to be there at every single moment that day, for our son. I had to be by my husband’s side and support him. He felt this was how he would receive closure.

I went and sat in the waiting room. Very soon after, James and the nurse walked to the door. I opened it and stepped outside with them. They advised me that I also had to give verbal consent of the stopping of the treatment. I did. They walked away, back to Deuce’s bedside, and I went to the waiting area.

I sat back down in my same chair by the phone. Looked at the clock and it was 3:11. I smiled, but felt sad. Time went on. James finally came out. He said, “Babe… The time of death was in military time. It was 15:41.” (Do the math!! Everybody-- 1+5+4+1 equals what??? “11”!!! I smiled. I felt secure.

I asked if he was okay as he hugged me, and he asked the same. We felt good. He said he was going to go back in the room to check on his mom and asked if I was okay to be here alone in a room by myself after all this. I sure was!!

He came back about 5 minutes later and said,

“Baby, the nurse said that the time of death that THEY clock is not accurate because they go by whatever the doctor says.”

I got worried a bit. He got this particular 15:41 time from the nurse’s perspective. I guess when the heart stops. The heart will stop beating at one particular time, and then the doctor determines the actual time of death.

“The ACTUAL time of death per the doctor is 15:50…” (Should I say it again? Do the math!! 1+5+5+0 equals “11”!!!) I was shocked!! But we were SURE.

So, ladies and gentlemen, this is exactly why James and I are at peace. This is what we think of every time we miss our Deuce Booty. When we see the number 11, or 22’s… or that time just keeps hitting “something”:11, we smile and say, “Deuce-Deuce!”

The children are coping well with it too, as they add times too. I’m finding that they are also getting into SUBTRACTING numbers randomly to make “11”. Today at my daughter’s 9th birthday party, I was looking for my microphone with my sister and James. We pulled out an old digital scale that I hadn’t yet put back up into my bedroom. I stepped on it to see my weight and it said, “123.5 lbs”!! My sister FREAKED! James was smiling!! The scale isn’t even calibrated correctly! That’s NOT MY WEIGHT!! I went to the doctor for my 6 week post op appointment on October 17th, in the morning! I weighed 130.5! That doesn’t add up, but the old scale gave me that weight today!! Deuce-Deuce!!

Please keep in touch. We love and thank you all.

The Carepage # “11” Activities: You will see what I'm talking about. Check out the specifics on the carepage...

(You may need to print this portion, as this is somewhat of a Carepage scavenger hunt!) Follow these instructions here to get on the carepage:
-------------------------------------------------------------
http://www.carepages.com

Visit carepage: "JamesSethDeuce"

login name: BABYDEUCE
password: BABYBOY
---------------------------------------------------------------

Remeber, If you decide to use this login and password, if you post, be sure to put your name. Many people use this so they don't have to create a carepage account)

The Carepage #11 Activities!!!

A. On the carepage, look at my entry of Deuce’s passing. It’s dated October 18th. Notice where I typed the location to find the bedside #. If you don’t get it reading it, read the sentence out loud. I realized that yesterday when I read the post to James.

B. Look at the entry dated October 5th. Click Next until you get to the entry on that date that says: “Before surgery: at Deuce’s Bedside”. Okay, notice the time right beside it when I started typing this entry at the hospital. Remember, we hadn’t even THOUGHT to add numbers during this time!

C. Scroll down on that same entry, read the time that I wrote in the line after the 5th paragraph.

D. You’ll notice the final entry, after the FIRST surgery, on the date of October 5th ended at 4:11 pm.

There may very well be more throughout the carepages, I just haven’t read through them all.

But what is the reason that I don’t like the movie “The Number 23”? During this final short stay in the hospital when he got very sick, October 15th – October 18th, Deuce’s bedside was #23.

~ ~ ~ ~ ~

Extras: Deuce's date of birth: 9/13... 9+13 equals 22...
Deuce's birth weight: 1lb 10oz 1+10 equals 11...

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Posted by MOMMYOFDEUCE | Comments: (1) | Permalink

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