Almost Day 139!.....34 minutes short.....

Hello everyone. It's Karen. I sat with Jacob on my chest yesterday afternoon before I left for the evening. We sat here and blogged about our morning to get a head start for posting in the evening. I put him down and went to get ready for my nice evening out with my Mom and sister. What follows is what Jacob "said" up until his time of passing, totally unedited....this is what it said and I have not touched it since 1:30 yesterday until now only to preface it with this and explain the facts of his passing. I will follow his words with a few of my own to help you understand what had happened. I do not wish to go too much into feelings and emotions of it all right now....I will later. But for right now, I would just like you all to know what happened....I will try to stick to the facts leaving our feelings out for the time being until I can find the words I want to say.

Day 139~
"I had a really wet diaper in the middle of the night. We thought maybe it was all the fluid moving on out.....well not all the fluid did....Mom changed me when I woke up and there was no urine.....I am still poofy and have the swelling on whichever side I hang out on (dependent edema). I need more wet diapers! I had another hit of lasix....those of you who are concerned about my potassium level....the dosing of lasix I am on is soooo low and mild and most potassium deficiencies happen when people take lasix as a regular med daily at the regular dose.....this is just a small hit for a few days and does not require the supplement at this time....thanks for your concerns.....pray I will not have any adverse effects as I may lose a tiny bit of potassium but hopefully not enough to cause any problems.


We got out the door early this morning and went to Joshua & Jonathan's first baseball practice of the season. It didn't start off to be too great of a day with all the rain and wind but the sun peaked through and we got a whole practice in. I hung out with Mom while "Coach Jason" (that's Dad) helped out the head coach and they were batting, fielding, throwing.....the leagues president came over and checked out my skills and told me I was a future player.....we sure hope so!....for now I will be the bench warmer or bat boy or cheerleader or mascot!....go Cowboy Donkeys! (if you don't' get that joke you need to go way back and catch up...Day 67)

My breathing is a little labored today....my belly is still distended and I am poofy which can both play a roll in making it more difficult to breath. Mom seems a little on edge about it but she is taking good care of me....she tries her hardest and just doesn't want to miss any signs of anything...plus she had to go out this afternoon which is always hard for her to leave me.

Mom headed off to a Ladies Day Out Tea Party...she went with Gramma and Aunt Nancy to celebrate Mommy's birthday (which is tomorrow!). I stayed here and hung out with sleepy Daddy and my big brothers. We



That's it. That is how we left it until we could pick it up later yesterday night. What I had hoped it would say is that he had a great Boy's Night, Mom came home to a mess of wet diapers and we snuggled for the rest of the night. But it didn't happen like that.

Before I walked out the door for my birthday tea, I kissed Jacob on the head and said, "Wait for me baby, I will be home later.....just wait." I walked out the door. I drove down the street and cried. I turned the corner of the road near my home and said while staring at the taillights of the white car in front of me, "Turn around. Go back." But I kept driving. I got to the tea and had a very nice luncheon with my church ladies, sister and Mom. Then I got a phone call. Jason said, "He's not doing good babe." I grabbed my belonging and we got in the van and drove towards my home...we were a half hour away. Jason called again and said, "He's not breathing babe." I told him I would call Nurse Ann Marie. I called her and she said she was on her way. Jason called again...."He's gone, babe."

What was happening at the house: Jason was downstairs with Jacob resting on his chest. The movie ended and Jason, Joshua and Jonathan headed upstairs for a snack while Jacob rested. Jason went to check on Jacob and noticed he wasn't breathing.....he was lethargic and in an apnea spell. He tried to stimulate him but he would not respond. His little body stopped working in Jason's arms. He brought him upstairs to make the phone calls. Jason and Joshua held him and cried together. Jonathan took in the situation from afar.

I pulled in the driveway. I walked up the stairs. I stared at my front door knowing that the home I walked out of was not the same home I was walking into. I opened the door. Jonathan greeted me by saying, "Jacob 's dead." My baby's body lay there in the arms of my loving tearful husband. I took his cold body and just held him. I rubbed his head with my cheek like I did everyday. I rubbed my nose with his with no response from him. I just held him on my shoulder where he spent a majority of his life. He fit so perfectly. Jason had already taken his feeding tube out. I took his body into the bathroom and took the adhesive off his chin. I bathed him, put lotion on him, clothed him and then held him. Nurse Ann Marie arrived. We took a few hair clippings, took some pictures and trimmed his nails. Nancy and Kevin (my sister and her husband) came in to hold him and then my parents. Pastor Joe, Pastor Jon and Amy stopped in. Jacob's nose began to drain some. Nurse Ann Marie, Nancy and I struggled to find anything to hold it back. We finally did and also placed a bib on him as to not stain his outfit. We told Ann Marie that it was ok to call the funeral director. It wasn't ok but if we waited for it to be ok, he would have never been called. Time passed slowly. We held him and cried and already missed his noises. The boys kissed on him a bit. Ann Marie waited outside for John, the funeral director, to show up. John came in and introduced himself. I held Jacob's body tightly in my arms. My family kissed Jacob one last time each, then Ann Marie kissed him. Jason and our three boys and I walked to the hurse parked in our driveway. John opened the front passenger seat and there on the front seat, he opened the most hideous box. Inside was a white sheet. The boys kissed Jacob. Jason kissed Jacob. I held him so tight. I walked over to the box. I held him tight. I kissed and rubbed his head. I held him so tight. I released my grip, held him over the box and said, "Oh my Goodness..." repeatedly. I finally lowered him into the box. Jonathan put in the box at his feet the black and white books he and Joshua had made for him. Joshua snuggled his stuffed animal bull dog in there too. I held my hand out to grab him and hold him again but knew that was it and I just covered his head with his blanket. John backed out of my driveway. I turned and grabbed Jonathan and said "Just hug me...." repeatedly. He did.

Those are the facts....the facts with no description of the ridiculous amount of emotions that go with each and every statement above. I've left that out. Please do not take offense to the bluntness. My intent is to inform. You know how long it took me to blog my feelings before about all that was going on. If you stick with us for a bit longer, you'll hear from my heart and not just the plain facts. It just may begin as a trickle and then explode into a flood. I have no idea. All I know is that I want you to know the facts like that. Do not stop reading now. Those are the physical things that happened. There are spiritual and emotional descriptions that just will take time. It is very important that you do not stop reading the blog now that you know those physical facts. How we view these events are very important for a true understanding of where we are at.....read the following posts.....