Friday, January 2, 2009

The Grim Reeper

Jersey's surgery went well with only minor issues. The surgeon placed a permanent catheter for kidney dialysis and performed a pleurodisis. She had some venting and sats issues but they were resolved. She tolerated the procedures well and rested comfortably the rest of the day. Her surgeon, Dr. Nigro, was pleased with her and the repairs and anticipates no further problems. She came back looking only slightly puffier which was a huge relief to me.

We met with her team of doctors: her cardiologist, surgeon, and nephrologist (kidney dr) to discuss her treatments, future plans, and prognosis. Her cardiologist says her heart function is good, her tricuspid and bicuspid valves are a little leaky but he isn't concerned. Her graft (donor valve) is working and while her pulmonary arteries are still big everything is relatively working great. Her nephrologist, who I now like to call the Grim Reeper, was very frank in an uncompassionate way. She's in acute renal failure which is hugely horrible. If she was a healthy little girl with only a kidney issue she would be very sick; Jersey has her heart, lungs, and now kidney issues making her prognosis grim. If the dialysis is unsuccessful there's nothing more that can be done for her. She has to be at least 20 lbs. and relatively healthy before she's even considered for a kidney transplant. If she's lucky she'll get back 25% kidney function. Her prognosis is small. The cardiologist said she maybe has a one in three chance of survival. Does he see her as a three year old? No, probably not. They just unloaded terribly rotten news, the worst we've ever heard and then he says "but don't lose hope". It was like a sick joke. We never have lost hope, but the hope we have was just squashed and thrown out the window.

It was a crappy, depressing day to say the least. We're ready for the stars to align in her favor, we're ready for the miracle, we're done with this cruel life for her. If she's going to be taken just do it now, her little body has been torchered enough. Give her relief, give us relief! There's no doubt in our minds Heavenly Father can make her whole. It's up to Him whether we get to keep her or say goodbye but I'm tired of waiting...watching. I'm exhausted, just about defeated.

35 comments:

Hess Fam said...

Oh Chris & Heidi,
My heart hurts for you guys. Try your best to stay hopeful. Miracles are real and we see them daily. Please know that I am praying for your family at this hard, hard time.
Love,
Megan

Matt and Stacey said...

I am SO sorry for your news. But don't lose hope! I've seen miracles happen first hand. I know sometimes it feels hopelessly optimistic, but stay strong and believe in all of your beliefs that she's going to get through this and she's going to be a strong, happy, healthy little girl. Tell yourselves and everyone else that that's the only thing you are going to accept! Not sure if it will help, but it sure helped me. It is hard! It is hard when you see the looks in the doctors eyes. The looks that they are concerned and the looks that the nurses are concerned. The idea that they have done everything in their power for her and now it's is up to her little body to do the rest. It's hard to stay strong. It's hard to keep faith. It's hard to remember that what you have is a miracle and during this time she needs you to be strong, to fight for her life as she is fighting with everything she has and to never stop believing in her and who she is. Stay strong and please let me know if I can help you in any way.
Take Care,
Stacey

Heather said...

Oh Heidi. We love you guys and feel for you and your extreme circumstances. I am so sorry. No words for you, just praying for peace and comfort. Heavenly Father is certainly aware and loves you.

Jen H. said...

You guys are amazing and it's inspiring to see your strength! My heart just aches and know we are thinking and praying for your family and little Jersey!

The Ridgway Family said...

Oh Heidi,

I am so sorry that you had ot have that conversation with her team of doctors. I remember that day so well with Eden. They had done everything and more than they could for her and I was so past my breaking point. Like you said, I was ready for our miracle - she had fought so long and hard, didn't she deserve one like all of the other sick babies? I know it is so difficult to absorb and get your thoughts around and I am sorry for how you are feeling right now.

I do know that Heavenly Father can make Jersey whole if that is His plan for her. It was so hard for me to accept that it was not supposed to be that way for Eden. She did her work here on earth.

I do not mean to sound grim, just keep reminding yourself that miracles do in fact happen and no matter what the Lord loves you and your family and Jersey more than we can comprehend at times.

I pray that she will pull through all of her difficulties and I also pray that you will feel peace and the strength that you need to keep going. You are in my thoughts and prayers constantly. I don't know you personally, but I feel so close to you as I know what it is to endure this as a mother. Never forget that the Lord loves you!

Love, Keisa

Mandi said...

Oh Heidi, how I ache for you. Ever since I heard about little Jersey being put on dialysis I just wanted to come and cry with you. What a horrible thing this is for you and I wish so much I could just take this all from you. Thank heavens for our knowledge of Heavenly Father. I have no doubt that He can make Jersey whole. If Heavenly Father wants her here there is nothing that will keep her from being here. I am praying so hard for you guys. As I am writing this I think that I hope I am not saying the wrong thing. I know that there is no right thing, but I just hope so much that you know how much I love you and think of you so often.

Nichols Family said...

Heidi...gosh dangit. What??? I'm sorry!!! I don't really know what to say because you're right, we hope for a miracle but it's up to God. Good thing Jersey is a major fighter so hopefully she can get through this without too much more physical pain and anguish. Sorry you had to hear that news. Hope the next few days are better for all of you and good news protrudes.

Cyndi said...

Oh I'm so sorry. My heart goes out to you & your family. We can still pray for Jersey & hope for her recovery but ultimately we can pray for comfort & peace for Jersey & for your family. Just know that no matter what happens you guys are loved and being prayed for.

Michelle Y. said...

Oh Heidi, I just ache for you so much! Please know how much I pray for you, your family and sweet Jersey. You are in my thoughts and prayers constantly. I have such a strong testimony of miracles. Thanks for the updates on your blog. Even though I don't know you well I always look forward to the updates on Jersey.
Michelle Yost

Lynn F. said...

You don't know me and I don't know you, but I came across your blog about a month ago and have been following your story almost daily and praying for you and your little Jersey. I just wanted you to know, especially now when things seem so bleak, that many many people care for you, even those who don't know you! I pray that our Father in heaven will wrap his loving arms around you at this terribly difficult time.

Sabrina said...

Hi Heidi, I just found your blog for the first time last night-and I spent several hours reading through your posts. I'm a mama to a special heart baby too (Double inlet-outlet left/right ventrical, dextrocardia and pulmonary atresia). I am so sorry to hear about your sweet baby girl. Your strength is totally awesome...you inspire me. My own mantra has been "this heart baby will be the best thing to happen to our family". And I firmly believe, that no matter what happens, it's true for all of us heart parents.
Praying and thinking of you.
Sabrina
Mama to Luna & Sienna http://lunaandwe.blogspot.com/

Morris Mama said...

Oh this is so awful! I'm in tears. We will still pray that Jeresy gets to stay here with you and that she will recover.

Chelsea said...

Oh my. We are praying for you all daily. We hope you are blessed with comfort and strength during this trial. And poor baby Jersey, I hope she does not have to endure so much pain, poor baby. So sorry Heidi. It is so comforting to know that one day she will be whole and pain free. THAT is reassuring and miraculous.

Kristine said...

Heidi,
What a terrible day for you and your family! I'm so sorry that you had to hear this news. Try to regain your hope. I know you will once you have some time.

We were told that there was a 1 in 2 chance that Katie wouldn't survive. Then we were told that she would be severely disabled. Not maybe...but WOULD BE. She obviously survived and she is one now with no obvious disability. We know that there could be challenges down the road, but she made it and Jersey can too.

I'm saying a prayer for you and Jersey right now.

Kristine said...
This comment has been removed by the author.
The Kemptons said...

I love you Heidi. You are such a strength and wonderful example. You have been through so much and we pray for your sweet girl every day.

Alisa Larson said...

I'm so sorry for the bad news. We continue to pray for your little Jersey. I can understand how you are tired of waiting, not knowing how things will turn out. I really hope you get the miracle we're all praying for.

TJ said...

Jersey and the rest of your family will be in our prayers. I'm sorry you have to go through this. Jersey must be quite an amazing little spirit, you are so blessed to be her mom.

The Smith's said...

Sorry for the rough news. Please let us know if there is anything we can do for you guys.

Katie said...

Sorry about your heartwrenching news. You guys really need a break! My heart goes out to you and so far, Jersey has only shown what a little fighter she is...she has beat so many odds, have faith that she will continue to do so! God is good, even when we're at our lowest and you are so right that He has a plan for Jersey. My prayers are with you and baby Jersey. Hang in there-
Love from another heart mom,
Katie (Maddie, HRHS)

Kippy said...

Chris & Heidi,
I can't get you guys off my mind.
We are praying for you.
Love,
Kippy & Nate

The Larson's said...

Heidi and Chris,
Oh my goodness! I wish there were words that I could say to bring comfort to you during this time. My heart just breaks for you guys and Ms. Jersey. Miracles do happen. You are such a strength to your precious Jersey, your family and to those around you. I know this time is so difficult, but try and picture Heavenly Fathers arms wrapped tightly around you and your family; He will continue to carry you through. Know how much we love and care for you and please know that you are in our thoughts and prayers daily and we will continue to pray for you and your sweet Jersey.

Mindi said...

I too am a heart mama and my heart is breaking for you right now. Every day is so huge for these kids. We will pray for you and sweet Jersey as it seems hundreds of others are too. From our experience I know there are those days in this struggle when you have to say, "Thy will be done," and mean it. I hate those days. We send all our strength joy, love, and generally good juju your way.
Much love,
Mindi and Baby McKay

lindsey said...

i pray for you everyday. and i am here whenever you need me. i will keep you in my fast tomorrow as well. ((hugs))

Danielle said...

I have been reading your blog for quite awhile now and haven't ever commented, but I just wanted to tell you how sorry I am for your heartache and sadness right now. I am thinking of and praying for you and your sweet girl right now.

You have such a beautiful family and I can feel your faith and strength- just from reading your words. I hope that you can feel all the prayers that are being said for you and your daughter- there are lots!

Jamie Y said...

I don't even know what to say...my heart breaks for you and your family. Your strength is amazing and as always, we'll be keeping Jersey in our prayers.

The McBrides said...

Heidi,
Our prayers and faith are with you, it's amazing what these small babies can endure. Ellery almost died for the fourth time last monday and this one was bad, I understand your frusteration on Jersey's behalf...don't lose hope and enjoy as much as you can with her in the meantime. Stay Strong, I know it's hard.
Call on me anytime, 201-4983
Shelley

The Galvan Family said...

Heidi & Chris, we are so sorry for the news, we are still hoping & praying for a miracle. I am sure Heavenly Father is aching with you, this trial will lift you somehow. I am sure it is so hard to see her suffering with all the tests & surgerys-- be strong & keep your light lit! You are such a wonderful family & your examples to those around you & the lives that Jersey has touched will forever be a blessing!
We love you!
The Galvan's

jayna said...

heidi and chris,
i am a friend of lindsey's and have been following your story as well. like the others who have commented, just want you to know that you and your little girl are in my prayers. as well as my fast today. i admire your strength. hang in there, jersey girl needs you to. here's to hoping for the very best for her.

Beegh and Randee said...

Heidi I am so sad that your little girl has to go through this. So sweet and innocent she shouldn't have to suffer so much. I think now that I have a little girl of my own, my heart especially aches for you and your family. You are a wonderful strength and example to me.
You are in our prayers.

Ashley said...

Heidi and Chris!
I feel for you! If you ever want to talk or vent, I am here! You are in my prayers!

the cummard family said...

heidi i had no idea. please let me help in any way! my kids would love to have tadum and/or tucker over to play ANYTIME! i'm sure you are so tierd, i really would be honored to help. jersey is such a little sweetie. find that peace in whatever choice our father in heaven makes for her.

Michelle Y. said...

Hi Heidi, I just wanted to let you know I added you to my blog since I always want to hear how baby Jersey is doing. If you would like an invite to my blog email me your email at yostmm@yahoo.com.

Ricki said...

Heidi - Cari just gave me the sad news. Please know that my thoughts have been with you this entire time and will continue to keep you close to my heart. Love, Ricki

Jewelia Eagar said...

Heidi - Amanda just called me and I wanted you to know how bad my heart aches for you. You and your family is my prayers and I hope you can find peace druing this trying time of life. Love you so much!