Struggles

Chris deployed a few days ago. Tonight I have found myself struggling. I can't stop crying. It's so hard to be feeling so sad when I'm alone and don't have him to talk to and not even know when we will be able to talk.
I held her hand and feet cast for a long time tonight after the kids went to bed. I talked to them for quite some time. But I knew I really wanted to be holding her. So I went into the living room and picked her up. She's sitting with me at the computer right now, in between myself and the keyboard.
I told her how sorry I was for everything (again). I asked her a bunch of questions I wish I knew the answers to. I kissed her a million times.
 I'm still crying. But I needed to get my thoughts out - otherwise, i wont be able to get any kind of sleep tonight. Last night i stayed up until 1am hoping Chris would call or skype... And of course I had to wake up at 6:30 to get Christopher up and ready for school. I know I need sleep... but this is kind of like staying up all night with a baby, right? God, I wish.

My beautiful angel... why you? God couldn't have really needed the most perfect baby in heaven, could he? I never heard you cry. You had never sinned. You were perfect.
And I feel so guilty for cremating you. I hate the thought and the idea of it and what has to be done to do it... it just doesn't seem fair or possible to do that to such a precious baby. But I had to take you with us... I couldn't stand to leave you. I've often wanted to take you with us, like to daddy's deployment. It just wasn't fair that you couldn't be there with us. And I don't mean by spirit... Your urn is perfect for you. A beautiful wooden box with a simple heart. A heart not broken. It has 3 red roses. One for each month you lived. A million grains in the perfect wood. One for each life you touched.

I wish I could be feeding you or changing a stinky diaper right now. I wish for everything with you. I wish for just one day to hold you where you weren't attached to everything. One day... I hope to get that pleasure one day.
               
I could write my feelings down forever about you. All the what ifs, could haves, and should haves. I miss you.
And I wish daddy was here so we could talk and cry with each other.... I love you.

p.s. did you get the balloon we sent you? Your brother and sister ask me all the time if I think you liked it and I tell them you love it and you play with it everyday.
                   

~*~ Our Sweet Caralynn ~*~

It's been 3 weeks today since Caralynn passed.

Chris was with us for block leave in Tucson. His second to last day there, August 13th, Caralynn had an infection. It was in her belly fluid and every time they'd drain her belly fluid, it would re-accumulate immediatly. Her sats were very off and at one point we very nearly lost her. It was so scary and so sudden.
You see, Caralynn had an allergy to the best antibiotics she could have recieved. So they weren't an option. Her heart was doing good. But she couldn't breath well because of the belly fluid.

After she crashed, they had us decide how far we wanted them to go. She had just had her 7th surgery to close her sternum because the wires broke off her ribs nd opened up. We knew they were very fragile and would be very very painful to her if they did chest compressions. So we had decided DNR but they could give her medicines to save her life. And the medicines did.

That night she had a good peaceful night. We were very happy in the morning, spent 2 hours with her until I had to take Chris to the greyhound station. Chris gave her kisses and said he loved her so so much and he'd see her soon.




The kids and I took him to the greyhound station, then went back to the hospital.

I was there with her for a few hours. The chaplain came in to talk to me, see how I was doing. We said a prayer for Caralynn. The second we said Amen, her blood pressure alarm went off. It was incredibley low. Her nurse, Steve called the dr's and everyone rushed down to the room... I stood there as they poked her to draw labs. I felt like I was standing outside of my skin just looking in through a window. I was so scared and nervous I didn't know what to do. The ped intensivist was --for lack of better word, yelling at me to make sure we didn't want to DNR. I could only think "I don't know, I don't know".

Chris had just sent me a text message saying he was going to turn his phone off so his battery didn't die.
So when I tried to call him, I just got his voicemail. So I sent him a text knowing he would see tha immediatly when he turned on his phone.
I called my mom and told her it was an emergency and she needed to call the greyhound station and see if they could get in touch with Chris's bus driver.

They were still working on Caralynn. The child life volunteers came and got the kids. And I was sitting outside her room watching everything. I couldn't take my eyes off of her. I knew what was going to happen. She was done fighting. She had fought so hard for 3months, 3weeks, and 3 days. Had 3 open heart surgeries and 4 other surgeries. We had tried everything we could to give her the best life. Her heart was strong! It was the belly fluid and the infection that made it impossible to breath. She was on the strongest vent settings and being on those settings, it's damaging to the body.

The chaplain was still with me and she was asking me how we could get Chris back to us... She thought of Ft Huachuca and if anyone there couldn't intercept him and bring him back (since he's in the army). But she had an idea to call the state police first to see if they could get him.

Chris called me right then, I told he he needed to get off the bus, NOW. So he went and talked to the bus driver, who told him to go grab his stuff, there was a rest stop he could drop Chris off at in 2 miles. Chris was almost 2 hours away.
The Chaplain got ahold of the correct state police people and they said they could do it! Chris waiting for 5 or so minutes before the cop car came racing into the rest stop lights and sirens going. Chris ran and hoped in the car. 2 officers shared the 2 hour drive and both cars went at least 100mph lights and sirens and got Chris to us in 45 minutes.
My poor husband, I had an hour to come to terms with what was going to happen. Caralynn, our baby, wouldn't be in pain anymore. She would be an angel to look over us. Our personal angel. But Chris hadn't yet... He was crying so hard and I tried comforting him. We were hugging over our baby. As nice as it ws to think about how she wouldn't be in pain anymore- it hurt so bad. Our baby would never have any kind of normal life. She would never have a bottle again (she only had a few before her first open heart surgery- the surgery that went so wrong and caused all of this). We would never hear her laugh, know how great life on earth could be, we would never walk holding her hand, have conversations with her, or anything.
We set up that Chris would hold her, and then me. Our dear nurses that had become family to us came to be with us. Affie and Christy could make it in to support us and be there. Kennon wouldn' be able to make it until later.


With our family there, Chris held her, and then Affie held her for a few minutes as she passed our sweet Caralynn from Chris to me.




I was afraid to hold her while she passed. I didn't know what would happen. Or how it would happen. Or how quick. The nurses and dr's said with the bad shape of her breathing it wouldn't take long. And that with them knowing me/us, I needed to hold her. So as it was my turn holding her, we told her we were so sorry for everything and that she wouldn't get to experience how wonderful life could be at home, with us. We told her it was okay to pass, that she would have a wonderful time being our angel and she would not be in pain anymore.

She kept peeking her eyes open at us. And she gave this look like "what am I still doing here"... it was a sad, in pain look. And when she looked at me that last time after we told her that, I knew it was time.


We had the kids brought in to say their goodbyes... but they really didn't know wha was happening, Even though we told them. It was just like saying goodnight to her every night for the last almost 4 months to them. We had some last family pictures taken and then the volunteer took the kids out again.



They turned the monitors off and took off the ventilator, but placed an oxygen mask up to her trach so she would still get oxygen and not sufficate.

It didn't take long. After a few minutes, maybe she turned pale. I couldn't feel her breathing anymore and we took the oxygen mask away. The dr checked her. And our sweet Caralynn with the broken heart... It was still beating.
It was so hard knowing that her heart was still strong, but soon would not beat anymore. I desperatly tried to feel it beating, but then some fluid dripped out her nose, and we knew. We kissed her a million times and told her how much we loved her. How much she had changed our lives, and how much we would miss her and the things that we would never experience with her.
Christy got to hold her as she took my baby from my arms to the bed. She too gave her kisses.
You see, Caralynn touched so many people. Taught so many what strength and fight was all about. She also taught everyoe to hug their babies just one more time, to go in for that 2nd or 3rd good night kiss, and that life is so precious and short.

We went to a grieveing room while they cleaned her up, clipped some pieces or her hair for us to hold forever, and also make castings of her perfect hands and feet. All of which I hold all of the time. It helps me grieve to hold her hand and look at her picture.



Kennon came to see us shortly after and so did Claire and our PICU friend Tonya. Many other nurses came in to say their goodbyes.

I didn't want to leave that night. I knew everything that would happen next and I didn't want them to. I knew that the first step to all of them was leaving her for the first time. I went back to the room 3 times while tryig to leave the hospital. She just looked so peaceful and perfect. Steve told me to take my time, he wasn't in any hurry (it was well past shift change) and tha he was honored to be the one to take her downstairs, he would get to hold her then.
When the kids saw her without all of the wires and tubes, they were SO happy and said "Caralynn's all better! Can we take her home?!"... How do you tell your 3 and 5 year old that she's in a different, better home? We tried explaining... and if you ask them today, they'll tell you Caralynn died and she's in a box on the shelf.

It's taken me a LONG time to write and finish this. But I knew I wanted to write it all down sooner then later. And since She touched so many, I knew I wanted to share her last few moments. I will never forget the looks of annoyance she gave us while we were taking our time to say goodbye. Our sweet Caralynn- you're the most perfect, prettiest angel of them all. And we love and miss you so so much.

8 weeks later

On Tuesday June 21st, Caralynn will be 2 months old.

So far in her short life she has had 2 major heart surgeries, 18 procedures, 25 days on ECMO, 70 x-rays, 20 echos, tons of blood replacement, and a dozen IVs.

To list that out is incredible... she has been through so so much. She's the biggest fighter I have ever met. God sure must have a plan for our sweet angel. We can not wait to prove to him that we can give her the best life here with us as possible. I know the nurses and doctors are giving her the best fighting chance and best life she can possibly have while in the hospital. But call me selfish... I want my baby home and in our arms and in my (and Chris's) care.

Yesterday she started showing signs on infection again, so they took cultures and we're waiting for results to know where it's coming from. There is suspicion it's from her incision on her chest. We're also curious if it's the spot where the cannula went into her neck. Since just an inch down is where the last central line got infected... they could certainly be connected.

She could use all the prayers we can get:
O Lord God, I come to You for help and succor.
You have afflicted my child Caralynn.
Help me to understand that You mean well.
Give me grace to bear my child's affliction with patience and strength.
Bless me, O Father, and restore my child Caralynn to health.
Do not forsake us, but give us an assurance of Your loving Kingdom.
Bless this illness to me and my child Caralynn, and help us both to be better children of Yours because of it.
In the name of Your Holy Son Jesus Christ. Amen!

Miracle Baby

Yesterday was so hard! The dr's didn't think she was going to make it...

But a few hours later her numbers started going up to where they needed to be. But we weren't in the clear yet. The first 24 hours off ECMO were crucial to Caralynn and what her outcome would be.

By 12:30am, just 12 hours after coming off ECMO Caralynn was already off 1 of the 4 cardiac support meds! And the others had been weaned down basically to half from where they had started.

When we got in the hospital at 9am- she was back to peeing on her own, she had 4 poops (these are HUGE accomplishments!), her o2 was at 60, bp in the 60 range and her hr was about 150-160.

Now, at 5:30pm her urine output is SO good! Everyone is very pleased- normal output is 6-7ml and she's doing in the 7ml or higher range.... she has to make up for yesterday when she only did 4ml (for 12 hours!) after coming off ecmo.

Tomorrow Caralynn will be getting another echo on her heart and lungs done to see how everything is going. Then it'll prob go to 1 a week, unless there is cause for concern. We're also going to be having a neurology consult because she doesn't care to open her right eye all the way, she'll peak it open but not open it wide like she does the left. And she hasn't cared to since she was born.... so we don't think it's a side effect from ecmo. Nor do we think a stroke could be the cause because the rest of her facial expressions are equal... we'll just have to wait and see.

But we are SO proud of how great Caralynn is doing. She is our strong miracle baby. We love her SO much!

~*~ OFF ECMO ~*~

This morning at 6am they started weaning her flows.
She was able to maintain her numbers very well!
Dr Teodori came in about 10:30am and had a look at her, how she was doing then talked to Dr Typpo (ped intensivist) and they both agreed that today would be good to come off- her heart is in really good shape and the lungs were as good as they'd get being on EMCO.

The OR came and set up in her room and at 12:30pm on May 22nd, 2011 - at 1 month 1 day - Caralynn came off ECMO!
For the first hour things were looking pretty good..
The second hour her stats started to drop........
They told us they didn't think her lungs were good enough, but they were going to try some drugs that would boost her heart and help with the blood flow that the lungs couldn't push through.
Chris and I took the 'big kids' to eat lunch and had a hard talk.... the dr's said if her heart stopped, that would be it, they couldn't do anything else because a heart & lung transplant hasn't been done in a newborn. And if they just did the heart, the lungs being in bad shape would make it fail.

So after lunch (which Chris and I couldn't stomach to eat) - we went back and talked with them again, understanding what would be done if things didn't work... we would lose Caralynn.

Shortly after, the new medicines came.
1 hour later- they were in and working GREAT! Dr Teodori was shocked with how good her stats were when he came in... he even went from 90 on her o2 to 80...
Now, 7 hours after coming off ecmo and she's doing realllllly good! We don't know much about her lungs right now and won't really until her morning chest x-ray.
Her o2 is now at 65 and she's maintaining her spo2 at 99-100 :)
Her blood pressure and heart rate are also in perfect range!

We're getting ready to leave the hospital as we've been here for 12 hours now with the kids and it's their bedtime. This has been the longest non-stop day we've put in with both of the kids here with us...

I pray for my sweet Caralynn every minute of the day and am so thankful for everyone else praying for her. Praise GOD she is doing good right now!! We pray that she will continue to improve and be able to wean off her cardiac meds ...

Coming off ECMO

Well- lots has happened in 9 days. I wish I could blog more about it, but the best way I've been communicating with everyone about Caralynn everyday has been on facebook...
Caralynn has been put on status 7 for the transplant list - which is an inactive status.
They did this because they think her heart is a LOT better!
Which give us a lot of hope :)
So since Tuesday 5/17/2011 - which is the first day they wanted to take her off ecmo.
But it got too late after Dr Teodori did a surgery and then had a procedure to do on another patient.

Wednesday 5/18- Her morning chest xray showed a lot of fluid in her lungs, so they were glad he didn't get to take her off the night before. They set up a vigorous suction schedule every hour to work the fluid out. He said he'd do it the next day after his surgery, which should be over at 1pm.

Thursday 5/19- They were all set to remove her from ecmo but then thought maybe one more day would help...

Today, Friday 5/20- After re-incubating her -removing it from her nose and replacing in her mouth, and then having a bleeding issue from a leg catheter, they decided that tomorrow or the next day would probably be better.

We're anxious to get her OFF already! Everyday she is on poses risks to all of her other organs, but we also need her lungs in tip top shape to come off. It's most annoying to be told today, no tomorrow, no the next day....
Thank you everyone for all of your thoughts and prayers!!!

Waiting on a heart, wing, and prayer

We've been so blessed to be able to make it to 20 days after Caralynn was born.

Her surgery was on April 27th- 6 days old.
It didn't go well. We almost lost her. The repair went okay, but not perfect.
But during the surgery something went wrong and it caused her heart to distend. And after the surgery the left and right ventricals were having a hard time working. There are also valves that are leaking too much.

They placed her on a ECMO machine which is a heart and lung by-pass to give her heart time to heal.
6 days after her surgery and on the ECMO, her heart still hadn't healed and they don't think it's going to.
The Dr and Nurses told us that we have two options: get a heart transplant or say goodbye.
We asked to have until Thursday for that decision because my mom would be in Phoenix to help us and we wanted her to at least be able to meet Caralynn.
The next day we set up to meet with a transplant team- we defiantly were not ready to say goodbye to her. She was sent to us by God for a reason- for a life- and we will give her the best life she can have here on earth.

The meeting went well- she would have to transfer to a hospital (St. Joes) down the street because Phoenix Children's heart transplant program wasn't starting up until June 1st. So we set up to do that, she would be heading over on Friday (May 6th).
On Friday they switched her to a travel ECMO circuit and were waiting on the official word that insurance had gone through. But in the mean time she needed her chest cleaned out -as her chest is still open. So Dr Pearl took her into the PCH OR while waiting for official word. We got the call half way through that procedure that she wouldn't be able to go to St Joes for the transplant because tricare insurance doesn't work with them...
Now the Dr's were scrambling to find her a new hospital- There were talks of Mott's in Michigan, UCLA, Stanford, and Diamond Childrens in Tucson. We picked Diamonds Childrens Hopsital (DCH) because they have an excellent surgeon and she would be the ONLY infant on the transplant list for 1A priority in the area. Not to mention it is only 2 hours from Phoenix and 4 from El Paso. So transportation would be a lot easier because when you need to transfer on ECMO to a further location - the only people that can do it, is the military! And that wouldn't be able to be arranged until Monday.

We've had great care at DCH so far- the Dr here though from an echo scan that he might be able to fix her heart. So Sunday, he went in to explore. Unfortunately, although we all had very high hope, her heart is just too broken.
Monday, we meet with the transplant coordinators and signed the papers!
Tuesday, May 10th at 6:07am she was officially listed on the 1A (top priority) heart transplant list.

Caralynn's other organs are all still doing great, she pees and finally after 12 days- she pooped! And thats exciting to us because that means no organs are shutting down. If any of her other organs would shut down, she would be removed from the transplant list.

So we pray everyday- all day... each time our phone rings that it's "the" call- the call that will tell us we have a heart. And in a whirl wind of just 4 hours, she will have it placed in her.

We have such wonderful friends, family, and strangers touched by Caralynn's fight- they are all supportive weather it's a nice comment on facebook, a phone call, text, or a donation... And we thank every single person supporting us. We love Caralynn so much and can not wait to have her home - around Christmas- as the transplant nurses said... :) wouldn't that be the BEST Christmas present in the world.