Final Preparations

We are hoping to have the final arrangements planned by tomorrow evening. Kevin's mom had open heart surgery 2 days after Jacob passed away, so we've been waiting for her to return home from the hospital before making any final plans. Kevin was also gone on the slope beginning last Friday & returned home this evening. Now that he is back & mom is doing well, we are hoping to schedule the helicopter ride for Sunday, October 9th, in the afternoon. Kevin's previous employer has agreed to take us to Mt Susitna, free of charge. I will post another message once it is all confirmed.

Kevin & I are doing fairly well, better then most might expect. There is something that many of you don't know (imagine that!), that has been in the works since June, and that is a fundraising event that is led by me called Crop for Cancer. Because of the amazing individuals that help me organize this event, I have been able to put it on my back burner, while they have picked up the slack. However, since Jake's passing, I have been involved full swing, making sure all I's are dotted & T's are crossed.

The event is this Saturday & we have sold over 160 tickets! Not only that, but so far we have also raised over $14,000 prior to the event even starting! I'm also excited to say that this year a Crop for Cancer is also being held in 3 other states; Hawaii, Texas, & Oklahoma and I have guided them with their events as well. If you are reading this & would like to participate, it's not too late!

In addition to the Crop for Cancer planning, I've been working with the NICU on developing a curriculum, based on the Journal the Journey project, that will be used to help other families cope with their NICU experience.

Stay tuned, as I hope to announce something that ties this all together in the next few days.

Many of you wonder how I can continue doing what I do & I have a few things to throw at you:

--Because my husband needs his wife back
--Because I still have a 2 1/2 year old that needs me & has suffered enough of Mommy & Daddy not being here the last 2 months. The last thing she needs is to see me in pieces. She needs to feel the security she felt before all of this happened. I am happy to say, that in just a matter of 3 days, her attitude was MUCH better!
--Because the world doesn't just stop because I need to mourn & cry my eyes out...time is still ticking & lives still need to be changed!
--Because of the Journal the Journey project that I'm implementing in the NICU
--Because of the final planning for Crop for Cancer that's THIS weekend, and I'm being depended on to pull it together
--Because the preparations for the final goodbye to Jake still need to be completed
--Because Jake would want me to take this tragedy & the emotions that I feel, & make something of it. He wouldn't want me to feel sorry for myself, but rather to continue to be a positive influence of those around me & those I've yet to come in contact with.

And through all this what has this sweet & handsome son of ours done? He's reminded the closest members of my family as well as the many that have been sent to this website, the true meaning & purpose of life.

We all have stories that need to be told & have a lasting impact on our lives. It doesn't matter to me if you do it fancy like I do with journaling, photos & pretty paper, typed on the computer, printed & stored in a notebook, write them on regular blank pieces of paper, or pay somebody to do it for you; the important thing is that you document it & store it somewhere safe.

Best of all, God has a plan for each & every one of us. A plan far bigger then we can see, hear or touch. Stretch yourself & be somebody you think you can't; be the wife, husband, sister, brother, mother, father, or friend that God has asked us to be & then wrap your arms around your family & tell them that they are most important in your life. There is no job or hobby as valuable as family.

Life is precious & not meant to be taken for granted. Every moment that we are here on this earth is a gift from God as well as another moment for us to share our lives with those around us & make the most of it. Another moment for us to tell them we love them and another moment for us to document our lives as only WE can, so that after we are gone, our stories & lives are remembered & a precious legacy is left behind to those we love, forever. Don't let time slip by you...

"I can do all things through Christ who strengthens me."
Philippians 4:13

The Medical Team

Pediatric Neurology

Dr Aaron Johnson

Dr Roderic Smith

Pediatric Surgery

Dr Stephen Jolley

Neonatology

Dr Emilio Avila

Dr Eric Johnson

Dr Jack Jacob

Dr Kenneth Kesler

Dr Anjali Parish

Dr Lily Lou

No words can describe the pain I feel in my heart right now. Jacob Tyler Aldridge joined his big sister, Brianna Renee, at 2:45 am (PST) today. Watching, holding & comforting him the last hours of his life was the hardest thing I will ever have to do. I had a vision in my mind of what it would be like having been here before, and it was nothing like it. I hope I never have to watch a friend or family member in their last moments ever again. I also hope, that over time these vivid images in my mind begin to diminish so that I can remember the happier times we had with him, although they are few.
 
I want to take this time to thank our friends, family & all the prayer warriors that gave us strength to endure this journey. I would also like each of you to consider purchasing the Journal the Journey kit that was inspired by this sweet son of mine. Join me in carrying out what I believe to be his purpose & journal an event that is dear to your own hearts so that it too can be passed down for many generations, as well as provide remembrance of happier times, or some sort of healing for the sad ones, as it's done for me. Included with each kit are Jacob's footprints, help me to spread them across this country & allow him to continue to touch more lives then anyone could imagine, including those children suffering from Hurricane Katrina.

Kevin & I aren't sure what kind of arrangements will be made yet, however, one thing is for sure, we are going to do our best to get a helicopter ride over to Mt. Susitna. He needs to be with his big sister.

It tears me up to know that you are no longer with us, Jake, but it warms my heart to know that you are no longer suffering.

Rest in peace my sweet son,
Love Mommy, Daddy, & Big Sissy Amanda

Amanda came to see Jake yesterday & we finally took a family picture. Course, this was before the NCPAP was removed so we might have to take another one!
(click picture to see it larger)

Is this ride over yet? Jake is doing about the same. The NCPAP was replaced with Vapotherm on Saturday. Vapotherm, is a high flow nasal canula that works like the NCPAP, however, it's easier to maintain & doesn't sit on his nose like the NCPAP does.

He seems to be tolerating it. His seizures are not as controlled so over the last couple of days, his medications have been adjusted. He's still on Klonopin, Depakote & Keppra. While I was there today, he was having a seizure every 5 minutes. Some were brief, others were prolonged, lasting about 1-2 minutes. He's still having 'events' but is self recovering from them.

He doesn't seem comfortable to me at all. The pain I feel in my heart every time he seizes is indescribable. He has got to be so tired from having all these seizures. I'm just aching. I don't want to see him suffer any longer, but at the same time, I hate the thought of letting him go.

It's such a vicious cycle.

Overall Status: Stable with increased seizures
Visitors: Grandma & Grandpa (Saturday)
Dinner Provided By: The Newman Family

I really don't know what to say about our little Jake. He is still having 'events' although they appear to not be as frequent. His CO2 level this morning was elevated, but normal for him so they are very happy with that. His oxygen requirements decreased throughout the night to 21-25%, down from 30-33%.

The NCPAP is still doing a great job with keeping his lungs expanded, it's just a mystery as to why he's having these events. Some speculate it's because he gets tired breathing & just decides to stop. Others think it's triggered by seizures, which sometimes it appears so, other times he's completely still & then goes blue.

At this point, we aren't sure what to do. The answer from God just hasn't been given to me yet, so I just keep truckin' along.

Pray that God will provide us a clear path, peace with whatever happens, & strength to continue this journey.

Overall Status: Stable
Visitors: Celeste & Judy, Noni & Papa, Kerry
Dinner Provided By: Celeste

Increased seizures throughout the night. 4 or more in last 45 minutes. Heart stops & loss of oxygen. On my way to hospital now...pray pray pray.

Overall Status: Critically Stable
Visitors: Laura, Mom Cray, Grandma & Grandpa, Chris C, Sara

---

Finally...my first night back home. Today, we've had a little setback. Jacob's CO2 level has started to climb & was increased over yesterday, however, it's still considered good. The fear is his body is starting to compromise because he just can't keep his lungs expanded enough. He also had an x-ray today that showed his left lung on the verge of collapsing again...arggg So, Jacob spent most of the day on his belly, which helps to keep the pressure off his lungs, and he seemed to love it.

Dr A. Johnson called for a status this evening & although his oxygen saturations are still doing good, we have had to increase the percentage of oxygen he's getting. Jacob also had some bradycardia (drop in heart rate) events today. It's unknown if it's his lack of breathing that's causing the brady's or if seizures have caused them, or a combination of both.

Instead of continuing to increase the oxygen, knowing that he's most likely compromising, Dr A. Johnson asked that we put the NCPAP back on. We will do another CO2 check & x-ray tomorrow morning to see if the NCPAP has helped to correct the problem.

We've also added Keppra back in the lineup within the past couple of days due to increased seizures. As of today, his seizures did seem to be less often, which is good.

Overall Status: So far so good!
Visitors: Celeste

Now onto something a little off the page. A couple weeks ago, you may recall in one of my daily updates, I had mentioned something that I was working on, but it was too soon to share it with everyone. It's now time.

Introducing Journal the Journey