Remembering Addie - Services

Addie passed away this morning at 1:13 a.m. in her Daddy's arms. She fought to live until the very last breath.

She will always be loved and we will always feel like a member of our family is missing until we see her again. Thank you for all of your love, encouragment, and for all of your prayers. We will never, ever forget it.

Addie's services will be Monday, April 2nd at Bethel Baptist Church in Galesburg.

We will have a visitation at 1 p.m. and Service at 2 p.m. and I can't believe I am writing this.

We were so blessed with nearly 4 months with our precious daughter, but it went by much to quickly.

Here's a poem I found that somewhat explains what I'm feeling. I thought some of what is says is very fitting of little Adeline.



God sent an angel to the earth...
The sweetest angel too
and for such a tiny little thing,
she had so much to do.
She knew she did not have
much time upon this earth to stay,
so she did not waste a second;
she got started right away.

Her eyes were bright and sparkly,
she took in every turn.
She did not miss a single thing,
because she came to learn!
God sent her here to touch the
hearts of those he could not reach...
She taught them courage, strength and faith,
because she came to teach.

Her tiny little body
was so full of God above,
you felt it when you held her,
because Addie came to love.

In three short months she managed
what many never will.
When she went home to Jesus,
her purpose was fulfilled.
She learned and taught, loved and played,
she learned her lessons well.
I know he was so proud of her
when she went home to dwell.

But when I miss her OH-SO-MUCH,
I can almost hear him say,
please understand, her work was done...
Addie did not come to stay.

Poor Addie

Well, I don't really have any good news to report. The nurse just left. Addie is really struggling to breathe. We had hoped the doctor would prescribe something to thin out her mucous so she wouldn't struggle so much to breathe, but apparently he doesn't think it will help. She's coughing a lot and sounds horrible.

Please pray for her, if she is to go, I really don't want it to be like this. But then, I know that I just really don't want it at all. We are in need of some serious strength right now. I am so in love with my baby. She is a beautiful person. I am holding my breath over how the future is going to play out. My heart breaks for Ainsleigh and the idea of her losing her baby sister.

Mom and Meghan have been alternating coming to help me. Without them I would have lost my mind a long time ago. Carly is coming on Friday. Please pray that Addie hangs in there long enough so that Carly can meet her. I feel so helpless to do anything for my poor child and I feel like the doctor has given up on her.

We have been blessed to have all of this time, but it makes it so hard to let go. I have to tell you all that I am so amazed by how you and so many others have reached out to us and I hope we can do the same if you ever need anything.

Keep her in your prayers tonight.

Before I try to get some sleep

Addie's somewhat stabilized again. She's definitely more blue than she was before and her heart rate is higher. She seems to slip in and out of good times, then bad. Sometimes she takes her entire bottle. Sometimes she doesn't have the strength to eat at all. She has problems with, well, certain bodily functions, and that scares me. She has apnea spells sometimes at night. All signs that her heart is failing.

I am so, so exhausted. My in-laws and my family have been so helpful. I'm too tired to think about meals or cleaning or laundry or bill-paying and I can't remember the last time I truly grocery shopped for anything other than diapers, snacks, or formula. My brain is in a constant struggle over how I can let my child die and not have surgery to fix her. No one else understands this either. But the doctors insist that, because she has trisomy 13 (a disorder they term "incompatible with life"), she will only continue to have problems. The statistics do point to this, but she's already beat so many other odds.

I have a true moral dilemma. I am not ready to give up on my child, but I am also not ready to have surgery. it truly frightens me to hand my child over, not knowing if I'll ever hold her again, unable to comfort her if something should go wrong. I'm so scared of her dying in a cold, sterile environment, when she could be in my arms. We've been through that already, when she was in the NICU. She would also have a tremendously difficult recovery, even for an otherwise healthy child. Even if I demanded surgery, I would have to struggle to find a doctor that would even refer me. Then there would have to be a surgeon who would be willing to perform the surgery and an anesthesiologist who would put her under, in a facility that would legally allow the surgery in the first place. Everyone is afraid of litigation. My health insurance might not cover the surgery under the circumstances. All of these are things I do not have the energy to fight. I'm ashamed to admit it, but I really don't. I'm scared to even make a decision.

I have this conflict going on in my mind non-stop and I can't believe the stress it causes. Between taking care of Ainsleigh and Addie, fighting with our Healthcare providers, and visits from hospice, it's really hard to even have a conversation with Tim. I'm trying to be strong and focus on Adeline. It's only fair since she has been such a strong little girl. She is so beautiful. She's getting these beautiful long eyelashes and she talks all the time now. She grabs her blanket and holds on while she sleeps. We know she is seeing something because she's starting to look up at people who come to see her. I just wish I could cuddle her without feeling like I'm making her uncomfortable.

I go through this list of things I want to do but can't under our circumstances. I keep thinking to myself, "once this is all over, we can do that again." It's just little things, like buying my own groceries and cooking meals, visiting friends and family, going for walks, taking weekend roadtrips, taking Ainsleigh to story-time at the library, going on vacation, seeing some bands play, staying up late at night once in awhile, leaving the house without having to find someone who's comfortable watching Addie and then staying out as long as we want, sleeping at night. I know that sounds so selfish and I feel awful for admitting it, when I know that it probably means that Addie won't be with us anymore. That ISN"T what I want!! I just wish she could be healthy and do things with us. I just want life to be normal again, in some sense. I just don't want to lose her. I'm scared that I will forget the way she smells, the way her voice sounds when she talks or cries, the way it feels to have her little fingers wrapped around mine, and how incredibly beautiful her little eyes are when she looks up at me. She has the sweetest little face and tiny baby body. Ainsleigh loves her so much. She prays for her every night. I tried to explain that Addie was born with some problems and she is getting sick because of them. Ainsleigh said, "no, mommy. Baby Addie isn't sick. She'll be okay because I prayed for her." How do I handle that?

I always hoped I wouldn't have a child with special needs, who doesn't? Now that I do, I'm surprised at how you sort of separate your love for the child with the struggle over how to care for her. I love Addie in such an awesome way. She's amazing to me, because I know how hard she struggled to come as far as she has.

I'm going to bed now, but I feel a little better getting that all out. I really shouldn't blog late at night. It's that time when I kind of go over everything and try to unwind.

Thanks again for everyone's concern. It's so neat that people love little Addie when so few of you have even met her. It's awesome and it keep me going just to have her existence as a person acknowledged by someone other than Tim and Ainsleigh and I.

About Addie

Addie took a little turn for the worse yesterday. It was very sudden. It was very difficult. She stopped being able to eat during the night and I knew something was wrong. The dr came and saw that her liver was enlarged, which is a sign that her heart is failing. She was having awful apnea spells that lasted for over 10 seconds. It started to seem like she was not breathing, more than she was breathing. She's doing better this morning and is really bright-eyed but we can tell she is struggling to breathe. Thanks for keeping her in your prayers and thoughts. We feel blessed to see her recover a little bit this morning.

I added some new pictures. The first is from last night, the others are from this morning. Addie's hospice nurse, Carol (who has been amazing and treated Addie like her own) is in a few. I think Carol has cried as much as I have. Ainsleigh is asleep in the blanket a hospice volunteer made for her. It has Disney princesses. She doesn't know who they are yet, but thinks it pretty "warm and comfy cozy."

oh no

Addie's not doing so hot. Her oxygen saturation is the lowest it has been in months. Her heart rate is super high and she's been much more purple lately. I'm at a loss. I'm tired, sad, and unable to fix her.

Please keep her in your prayers. It's tough and surreal. Could I really lose a child? She's getting such a personality and is alert all the time. She makes sweet noises and looks up at me and tries to suck her thumbs.

I'm just not ready. Oh, oh no. That's all I can say right now.