Friday, December 5, 2008

Update

She's fought her way through her first 24 hours, the very most critical post-op. We still have under 48 hours to go before she's kind of "out of the woods". I've become a "monitor watcher", a parent whose eyes never leave the monitor, paranoid at every beep I hear or when I see any number drop. I ease drop on the nurse's phone calls and then grill her on what she said or discussed with who and why. Any time a nurse opens her medical drawer that holds additional medication I jump all over her asking a zillion questions. A little paranoid? Perhaps, with very good reason.

Yesterday the doctors and her 2 nurses worked on raising her blood pressure. A low blood pressure means her organs aren't receiving the proper amount of oxygen and if this happens long enough they shut down. To keep it lowered they almost continuously pumped fluid into her. Because she's so sick her veins don't hold the fluid, rather it leeks out into her tissues making her extremely puffy. Other than that her little body seemed to do okay with no major alarms.


Here's a little tour of what's keeping her alive. This is the ECMO machine that basically acts as a bi-pass and dialysis machine which is basically life support. With out this machine she would only have a 10% chance of survival. How it works is deoxygenated blood leaves the tube on her left, runs through the machine and then returns on her right with the oxygenated blood. It's acting as both her lungs and her heart. The nurses, surgeon, doctors, and ECMO tech are pretty vague on what exactly it means that she's on this. From my asking questions and researching it on-line I've learned that only the very worst cases need this machine. She is so critical that this machine is used as a last resort. She's hanging on but barely, maybe by half a hair. Not to sound dramatic but it's the truth.





These funny contraptions are pumps that pump her medication. 13 pumps in all and 4 drips. The monitor in the back ground is for her vitals. This is the machine that beeps when things aren't right, the one I can hardly peal my eyes away from.








This is her sprinkler system of tubes. This picture shows only most of her tubes, there's still more, they're just hiding.












The smaller monitor on the left measures the oxygen to her brain, the upper number, and the lower number measures oxygen to her kidneys. The larger monitor is for her ventilator, it displays different setting and numbers all associated with her breathing.
This little contraption is a pace maker for her heart. Yesterday she was pre-heart attack, her heart was beating in the 180s and it should be in the 140s-150s. Fortunately today it's 158. This machine helps her heart beat at a certain rate and in a certain way.
Today the ECMO tech has been able to pull off a teeny, tiny bit of her extra fluid and she's been handling it farely well. But other big things are going south, her kidneys aren't functioning and her left lung is collapsed. The nurse says this is normal but a part of me wonders if she said that to make me feel better. I don't know what to think. Ignorance is bliss but excruciating. There's so many questions I want answered but I don't want to go to those places right now. The doctors are extremely concerned with her puffiness and the goal over the night is to decrease it as quickly as she can tolerate. Her nurse estimated she has an extra liter of fluid. A liter on her tiny body! I measured her head, when she was born it was 13 in, today it measured at 15 1/4 in. She's so big her diaper can't be fastened and she can't open her eyes. Her ears even touch her shoulders. Poor baby! To add to the issues her ART line (a line in an artery where blood pressure is measured and blood is drawn) isn't working properly. Normally it would be very simple to take this line out and put another in at a different location. The problem with switching locations is her blood is extremely thinned because of the ECMO machine and bleeding is a huge issue. It's an issue anyways but to do a "procedure" increases greatly the chance of bleeding. I know this is a downer post but that's how I feel, down, and this is our reality. I know we aren't in charge and neither are the doctors. I know no amount of effort can save her if she's called home. It's painful to watch...waiting...praying for the slightest improvement, even if that improvement isn't visible. I look at her little body, so sick, so on the verge...I hope when she's healthy and in our arms I can look back and see the lessons I was suppose to learn.

31 comments:

The Fam said...

Heidi and Chris--my heart goes out to you and your family right now. I've been glued to that monitor before, and it's one of the hardest experiences a mother can go through. We will be praying hard for Jersey and hoping for quick improvment. I can't believe all you've had to take in and learn in the past few days. You're amazing.

Love,

Lara (Candland)

lindsey said...

if you would like to donate to baby Jersey and her family...please visit me at
www.lindseyspursuit.blogspot.com

(i am chris' sister) every penny that is donated will go directly to their family

Kippy said...

Chris & Heidi-
I can't stop thinking about you and Jersey. I'm sure it is unbelievably scary, yet maybe comforting to know it is out of your hands. We love you and are continuing to pray for her improvement.

Brittney said...

Heidi my heart is beyond broken for you. I am so incredibly sorry for what you guys are going through! I do know that Heavenly Father has a plan for each and every one of us though. I truly hope that she improves quickly and you can take her home and love on her! You all will be in our prayers!!!

Meisha said...

Just wanted to let you know Micah and I think about you guys constantly. Our hearts go out to you and I hope you get to snuggle little Jersey soon. You're definantly in our prayers.

Kate said...

It is ok to have a "downer" post. It is ok to hurt, feel sad and even ask why. You have a good perspective on Who is in charge and He knows upr faith and how you feel. You are amazing people and clearly a chosen family to be tested in such a tender way. I love you so much and we have not stopped praying for you. We love you too, Jersey girl! Love, Katie and Cody Zandt

Heather said...

Oh sweet Heidi. I remember the beeps and chirps of the monitors and listening for any change in their rhythm and what they might mean. We are thinking of you and praying for peace, comfort and strength.

The Albertson's said...

I continue to think about you and your tiny precious baby every day. God does have a plan for everything in life, although we may not always understand the plan....he is in charge. I am glad I had the chance to meet you and your sweet baby. You are an amazing family and you will be stronger with all that you have been through. I am amazed at the blog you have created, you truly have done a wonderful job. Remember to ask all the questions you need at any time, that is your job and right as loving parents. Much love, Kelli (Jamie & Jason's old neighbor)

Amanda said...

I love you! I love you! I love you! I'm so sorry you have to do this! I want, so badly, to fix this and make it all better! You must be one awesome family to have gotten blessed with Jersey. She is obviously one of the most special angels that Heavenly Father saved for now. I can't wait to meet this beautiful girl!

mom/sandy said...

Thank you for updating Jersey's condition. From my experiences w/ Bob journaling can be a source of therapy. Your family is in my prayers. What a lucky baby to come into your sweeet family.

Love to you--Sandy Williams

The Larson's said...

Heidi and Chris, tears have filled my eyes and my heart goes out to both of you and your sweet Jersey. I pray that she may be able to pull through this difficult time. I couldn't imagine all you are going through and the thoughts that are going through your minds. Know you are extremely loved and cared for by so many. We are here for you, we love you and will be praying hard for you and Princess Jersey. Lots of Love
Kerri

Janalyn said...

Heidi I appreciate hearing the details of how Jersey's doing. Don't ever feel bad about a post that's not upbeat- life's not always positive.
Good for you for asking so many questions too.
I'm so sorry things can't be easier for your sweet princess. She certainly has so many people praying for her. Love you girl!

Kristin said...

Oh Heidi. My heart is breaking reading this and thinking what you must be going through. You rarely leave my thoughts and never my prayers. Happy Birthday!!! It's 12:14 am I hope today brings great news...

Maren said...

HAPPY BIRTHDAY!! i will pray for a birthday miracle.

Shanen said...

So I had to regroup this morning to be able to write something down. I just cried last night reading this and wasn't quite sure what to say. You are amazing to have this blessing/trial right now. My heart aches for you and for how difficult this must be on you and your family.
One can just never know the pain it really is unless they have been there on their own. I read the comments from other heart babies mothers and their comments are real, and heartfelt. I hope you find some strength in the love that we have for you and your family as friends that KNOW you, BUT also from the "other mommies" that KNOW what you are going through. We all love you and pray for your family and sweet Jersey many times throughout the day.
Happy Birthday to you today and I hope your birthday wish comes true.

The Smith's said...

how do you keep track of all the machines. Nice that it isnt overwhelming at all.

Suzanne said...

This is Suzanne-Lindseys friend, I just want you guys to know that we are thinking about you and praying for you. My little Preston is smitten by Jersey and always wants an update, he is constantly praying for her. Your little Jersey has touched so many hearts in her little life, she is truly a gift from our Heavenly Father.

The Johnson Fam said...

Dear Heidi and Chris,
We too are sitting and waiting and constantly checking your blog for new information. Thanks for all of it. All my kids come in to read and I explain to the younger ones what is going on in each picture. We can't wait to see this sweet littls Jersey girly that we have fallen in love with and are praying so much for. We love you.

Aunt Rhondy
PS. Happy Birthday-I'm thinkin about you.

me said...

I was given a link to your blog from Shanda Riggs and I just want you to know that these special babies are so strong and amazing. We have our own little miracle boy. our Bryson was born with a condition called Hypoplastic Left Heart Syndrome. His left side of his heart never developed and he has had 3 major open heart surgeries and 3 heart Caths. So I feel for you and what you are going thru. I know that I have never felt closer to my heavenly father than when Bryson is in surgery. I know that he is being looked over and I know that Heavenly Father is very mindful of your sweet baby and is taking care of her.Please feel free to contact me if I can be of any help.
gigabug@juno.com
also please feel free to check out our carepage. www.carepages.com
carepage name BabyBryson
Sincerely,
Kierra Pugmire

Lily's Mama! said...

I wish I had some words that would ease the suffering you are going through right now, I wish I could say that you have nothing to worry about, but as a parent we worry at everything. With "normal" children we worry about colds and such, but that seems such a little thing now compaired to the path your life is on.

You will look back on all of this and learn from all of it. What we learn depends on what the Lord wants to teach us. Something I try to remind myself when the going gets hard is, God chose me for this life, he chose me because he felt I was strong enough to endure the pathway ahead of me. Even though somedays it feels as if you can't possibly make it through another day, the Lord will prove to you other wise.

I wish I was there to talk with you in person, I know how much it helps to talk with someone in person. I guess we will see you soon enough though. Avery told me you were in room 12 but wasn't for sure. If you ever need someone to talk to please NEVER hesitate to email me or apporach me once we get to the hospital. We will be there on Thursday, our surgery got bumped back to then.

Please know you are in our prayers!

Sincerely
Jenna

Morris Mama said...

Thank you so much for keeping us all updated! I hope that you are getting some sort of rest and that you somehow manage to have a good birthday! I know that watching that vitals monitor can be torture. We are praying that Jersey will grow stronger and stronger and be home with you soon.

The Simmons Family said...

Welcome to the wonderful world of Monitor Watching. I'd like to say the obsession goes away with time, but it NEVER does. We are continuing to pray for Jersey and your family.

Part of being a parent to a sick child is never knowing what tomorrow will bring. We have to put our FAITH in Heavenly Father, cherish EVERY moment we have with our little ones and PRAY for the strength to make it another day!

Andrea (Owen's Mom)

Michelle Bair said...

Heidi & Chris
I'm so sorry you guys are going through all of this. Please let us know if there is anything that we can do for you guys. We'll keep you in our prayers.

Jewelia Eagar said...

Heidi - I am so glad that you are posting the lastest on Jersey because I can't stop wondering how you and her and your cute family is doing. You guys are in my prayers daily. I can't wait till you can all go home and we can meet this special little girl. Much love, Jewelia
p.s. Happy Birthday (yesterday)

Cindy said...

Heidi your family is in our thoughts and prayers!

R & K + 2 said...

I think about you guys everyday. I know this is such a scary and critical time, you guys are so strong and I know the Lord will bless you for it. It breaks my heart to hear the things that sweet Jersey has to go through,she's such a sweet and special baby! Love you guys.

Kim said...

Do you ever stop and wonder what you were thinking back in the pre-existance when you signed up for such a trial? I wonder that about myself all the time. Did we know WHAT the trials would be or just that we would have them?

Either way we did know the reward when we made our choice. We were trained there on how to get through those trials, we just need to remember the training.

You are stronger than you know and when that strength fails our Father in Heaven gives you strength beyond your own. One day you WILL look back on all of this and realize the blessings that came from it. Small consolation at this point, but never lose your eternal perspective.

Alisa Larson said...

I am so sorry this is all happening. Please know your family and especially Jersey are in our prayers.

tcandland said...

Chris and Heidi,

Taylor and I have been thinking about you all week, we just want you to know that we are praying for your family and especially Jersey- she is so beautiful! Please let us know if there is anything we can do for you.

Sonia said...

Heidi and Chris. I love you both a ton and pray for your little family daily. Jersey is so blessed to have such strong parents as both of you. My heart aches that you have to go through this. I love you so much and pray for you constantly. I saw this quote, and I thought of you

“… the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.

If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens—even if some days it doesn’t seem so. Jesus said, “I am come that they might have life, and that they might have it more abundantly.” Enjoy those blessings right now. They are yours and always will be.”

The Lord will carry you through this. He feels your aching hearts-he experienced your pain and hurt. Go to Him constantly.

Chris....just hold Heidi:) Love you both. Sonia

Chris and Kelly said...

Our thoughts and prayers are with your sweet family. May you have the loving comfort and peace of our Heavenly Father.
Love,
The Norton Family