Tuesday, March 22, 2011

Day 39: Still Hanging On

We are still here in the "box". I think I intentionally made a new post today instead of tomorrow just so I did not have to type Day 40. I am holding out hope that we will be out of here by the end of the week.

His Neutrophil counts were 200 on Sunday and I never heard yesterday but I am certainly hoping that was the start of a regular upward trend. It has to be...we have 3 anxious little ones waiting to see him at home.

Sweet Aria. She loves him SO much and talks about him constantly. She came out the other day when I was home for a visit and said, "Giovanni will be home in 3 days" and showed me a calendar she had made, complete with yarn to hang it over her bed. 9 days prior she heard us saying that it would probably be 12 more days so she went and made a calendar and was marking off the days...she only had 3 left so she thought she would be seeing him soon. It made me so sad for her. I told her that we were not sure of the exact day but it would be more than 3. She was so sad so I told her we could add more days and keep the count going and promised her he would be home soon. I saw the calendar yesterday still hanging above her bed. She is such a sweet, special soul. I feel like she has to much seriousness and adult things weighing on her 6 year old mind. She talks about Liviana all the time and brings up, "Remember when Liviana would come running into the room and tell us, "Guys, Calliou is on, Calliou is on"...she doesn't run or walk anymore though, I miss that". It breaks my heart that she spends time thinking about those kinds of things. It is a daily event. I am honored to have such a sweet, sensitive, caring, nurturing daughter and I have to believe that all of this will shape her into the person she will be as an adult...I know she is going to be an amazing woman.

I think Giovanni has been in the hospital too long. He thinks of all of the equipment around his bed as "his" and he tries to run it all. Today, when his fluid pump starts beeping he walks over to the pump in his crib and starts pushing buttons to stop it. He is running things around here. I can't even begin to express what an amazing little guy he is. He continues to smile, laugh, play and have fun all day long. The situation has not phased him. He has not been outdoors in 39 days, his feet haven't touched the ground in 4 weeks and he is either in the crib/bed or high chair all day long. He still thinks his life is a joy. I love how he knows I am smiling at him even with my mask on. His face lights up and his smiles are the cutest thing ever. He blinks his little eye lashes and brings me such joy...and peace each day. He is growing up so much here too. He has started saying, "Night Night" and he says "Hi", "Car" and then has a whole intricate language all his own. He was playing on the phone today after I got off the phone with Brad and it sounded like he said, "Hi Dada" plain as day. He is just such a doll...I can see why the kids miss him so so much and the nurses adore him.

I have been slowly working on this post waiting for the blood counts for the day. I asked the nurse once for the numbers and she showed me a sheet that had HORRIBLE numbers including zero Neutrophils and platelets of 22,000. I have to believe it was an old sheet or someone else's sheet all together. She did not speak English so I could not discuss the issue with her. I hit the button a few minutes later and told her I wanted to speak to a doctor (Medico) and she left. That was about an hour ago...still no doctor. It is SO frustrating to have my entire day hinge on those numbers and I can't GET THEM. I can't leave the room so I am stuck here and just have a little nurse button I can hit but honestly, I have had to wait 40 minutes for someone to come when I do call a nurse. I have hit the button again...we shall wait...again.

I am debating about going home for the night and letting Tarah stay with Giovanni. He sleeps better when she is here than when I am. I thought a nice to just sit and do nothing and not sleep either on a chair or in a crib sized bed with a baby would be nice.

Ever since I was young, when I go to bed I tell myself what I want to dream about. I guess I always thought that my subconscious would listen. Sometimes it works. I still often do this and my usual dream request is about Liviana. I want to see her running, walking and being the Liviana we all know from just months ago. She has changed so much in the past couple of months. She is getting so tall, her hair is darker, curlier and longer. I try so hard to imagine what it would be like to round a corner in the house and see her standing there, with that amazing smile as she runs up, hugs my leg, looks up and says, Mommmmy. It is so hard for me to even imagine what has happened to our lives, and her life if the last few months. The "whys" are still there. It is hard to imagine any "why" this would happen to her. There is not good explanation. I hear the "God only gives you what you can handle" phrase all the time but my issue is, what about her? What about what she can handle, what about what she should have experienced and had in her life. I WILL handle this all but it certainly doesn't always mean I can.

I am still waiting on that nurse and/or doctor. Someone is shooting off fireworks outside. Maybe that is a sign for good counts :).

Hug Your Babies!

8 comments:

Terri L. Helmick said...

Amy I feel for you. I've never liked it when people recited the line, "God will never give you more than you can handle." I think I got way more than I cold handle. Like that is supposed to be "comforting" well it is NOT! I just wanted to tell you that I'm praying daily and sending good thoughts your way. Keep up the good work. (It doesn't feel good I'm sure.) I love that your auction is going SO well. I will say God does send small blessings along the way to make things a tiny bit easier. God Bless.

~Terri
http://avaslifewithcdhlife@gmail.com

Anastasia said...

Amy, I am sending you and your little ones all the love and support in my heart. You amaze me!

cheryl said...

Amy,

We have never met, but I am Chris Hodson's mother in law. Or Lisa's Mom sounds better. Anyway, she has been keeping me up to date on your family and I wanted to let you know that you amaze me. I have four children of my own and I would love to have a glass(a big one) of wine with you. I wish I could do something more concrete for you and your family, but you are all in my prayers everyday. God might give you more than you can handle, but he is always there with you.
Cheryl Rivenbark

craftytammie said...

i'm there for the wine too Amy! your children are all so amazing, which shows that you and Brad are amazing! Praying you get to be together again SOON!

Kelly H. said...

I just found your blog and have a lot of catching up to do...I will be saying nightly prayers for your family! Stay strong.
~Kelly~

Veronica said...

Amy, we are busy planning a momaha.com Mom Prom for you guys here in Omaha. We got some key final approvals today. It's going to be April 22 at Regency Lodge. We're all very excited and wish you could join us. (We're working hard to get everything donated. All of the money we collect will be given to your family to help with medical and other expenses.
You've got a lot of people pulling for you here.
Veronica

Aimee said...

We're sending you all a ton of love and prayers for good counts...I look at Mac all the time and just don't understand how this is supposed to be part of a larger 'plan'. We think the plan sucks most of the time...although we don't lose faith entirely because the only thing that keeps us going is knowing one day we will all be together. I hope your daughter's calendar is a short one and you are all 'home' together soon. Stay strong...there are many thinking of you and praying for you.
The Murray's - Mac (MLD, 6.5) Colin (carrier, 5) Brian and Aimee

www.caringbridge.org/visit/cormacmurray

Aimee said...

We're sending you all tons of love and prayers...we pray your sweet daughter's calendar rings true soon and you are all under the same roof. I look at Mac all the time and wonder how this could possibly be part of the bigger 'plan'...the plan sucks. They are kids...as you said - we can handle it...but they are kids and they deserve the chance to walk and run and play...and laugh. You are a very strong family and know when you feel down that there are many of us out here holding you up.
The Murray's - Mac (6, MLD) Colin (5, carrier) Brian and Aimee

www.caringbridge.org/visit/cormacmurray