Friday, September 4, 2009

A Broken Heart

It has taken me 24 hours, since the news of Mason's Heart Cath, to pull myself together enough and to pick up a few of the pieces from my shattered heart to be able to post about my sweet Miracle Mason. Thanks to Shauntelle (Kaidence's Mommy and dear heart friend) who fortunately happened to be there for a cardiology appointment yesterday, was there for me to cry with and hug when I was told Mason was not going to be a candidate for a new heart. Mark was coming up to be there when they were supposed to finish the cath, but they called me to the cath lab an hour early. Thank you to everyone who has sent comments and e-mails in response to Shauntelle's post yesterday.



So what were the results? Mason has pulmonary vein stenosis. Which I am still learning about myself. But, basically there are two pulmonary veins on each side of the heart going to each lung which bring back oxygen rich blood from the lungs. Stenosis is when there is partial or total obstruction in the vein. Both of Mason's pulmonary veins going from the left side of his heart to his left lung are totally obstructed. Thus he can not have a transplant without at least one of those flowing from heart to lung. You need at least 3 of the 4 (his two on the right side are fine) veins open and working to receive a new heart. This also means he has a very sick left lung along with the high pressures in his heart causing the low function.



What can be done? They only other option presented to us is a heart-lung transplant. But that would have to be somewhere else like Boston or Stanford.....and he may not even be a candidate because of how progressed the stenosis is.... and usually the risks out weigh any positive outcome of this type of transplant. We have not yet decided on getting a second opinion or not, because we do feel the cardiac team at Primary's his highly qualified. We are praying for guidance.



Although I had expected to hear from his cath that "yes" his pressures are high and he does for sure need a transplant I am taking these results with faith that our Heavenly Father does have a plan for Mason. Definitely a different plan than we had hoped for with a new heart bringing him a higher quality of life, but we can still pray for miracles along the rest of our journey with our sweet baby.



At this time, we plan to optimize Mason's quality of life the best we can with his heart meds and oxygen (as well as still avoiding sickie germs) keeping the broken heart he was born with. He will continue to see cardiology every 4 weeks, or more often as needed, for check ups and to up his meds as he gains weight. We will enjoy our Miracle Mason as long as we are blessed to do so.


Thank you for all your sincere concern and prayers. We will be doing a special prayer and fast on Sunday for Mason and our family. We would love any or all of you who follow our story to join us as well.

39 comments:

carolyn q said...

Summer and Mark,
I am not sure Mark remembers talking with me early on after Mason's birth as I had a bad case of laryngitis. However, your family has remained in my thoughts and prayers.
I am sorry the news is less than positive in the direction you were hoping to go. I will definately be fasting and praying in your families behalf. I am so sorry!
(Hugs)
Carolyn Quilgey
President, IHH

Gourley said...

You can plan on us being involved to pray with you and for you. We love you guys very much and pray that the Lord will calm your fears and give you comfort through this time. Miracles do happen, and Mason truly is a miracle.

We are sorry the cath did not go as expected. We know how difficult it is to wait and pray for good results. As always, we will pray for you now and especially for the fast Sunday. Keep strong. Heavenly Father is with you.

Love,
The Gourleys

ryan. heather. macie. millie. said...

Strickland Family,
Reading this truly breaks my heart! Having 2 children now is teaching me how to love more than I ever have before, and I can't imagine the position that you are in right now... all I can say is that we will be praying for Mason and your Family and may the Lord bless your family with the strength and Faith that you need at this time! We love you so much and are hoping for the best! :) Please let me know if there is ANYTHING I can do for you! (Even if it means coming over their to do hair!) I would love it!!! :)

Stephanie said...

Dear Summer, I'm so sorry to hear the news. We will definitely include him in our fast on Sunday and you are always in our prayers. Please let me know if there is anything we can do to help you. We love you guys.

The Simmons Family said...

We are on a rollercoaster ride, and we never know what's around the next turn. I feel your sorrow and my heart aches. There is a plan for Mason. I'm pretty sure it includes many more miracles, more time at home with his family, enjoying life, smiling. Maybe his miracle doens't include living in a hospital room anymore. We are praying, fasting and thinking of you a lot!!

I can tell you first hand that Stanford is a wonderful place, if you decide to just have them look at Mason's charts.

Hugs.
Andrea

Deb said...

Mark, Summer and Family-
You are always in my thoughts and prayers. Heavenly Father must have a special plan for little Mason; what a wonderful, beautiful child of God. We will be fasting and praying for your family on Sunday.

Ryan and Hilary said...

I was so sorry to hear your news. I know that Heavenly Father has a definite plan and purpose for each of his children. We will be praying and fasting for your family at this time. Sending lots of faith and prayers, Hilary Cook-Daxtons mom

Rachelle said...

Our family will also be fasting and praying for your sweet boy and family. My children have been very interested in Mason and on occassion will ask how he is doing. Sometimes things do not turn out as we expect but with faith in our Father in Heaven it helps ease the pain sometimes and bring peace when otherwise there would be no understanding. I am sorry things did not go how you had hoped. I admire your perserverance and faith. I wish I lived near you so I could help or at least come and visit. You will be in our prayers.

Rachel Lund said...

Strickland Family,
I know how much siblings and parents love the baby of the family, with my own fifth child being the exact age of Mason! My own children would love to know that, if needed, others would fast and pray for their sweet brother and baby! We will fast and pray for your family and Mason and hope that you feel some extra comfort on that day. We are so sorry to hear the disappointing and unexpected news for Mason! I surely hope you feel Heavenly Father's love and the guidance that you seek.

Goldie Gunderson said...

Summer and Mark,

I am so sorry to hear your news. Poor little Mason. You guys will be in our thoughts and prayers. I know Heavenly Father does have a path for little Miracle Mason. Please let me know what I can do to help you! I am free to help with anything with you or your kids. If you need me to help with anything on the days I am over tutoring PLEASE ask!! Good luck with everything. We will be praying for you guys.

Stephanie said...

Read about your sweet boy on Owen's blog. I just want you to know that I am praying for your little one and your entire family. He is absolutely adorable and I just know that he has many more miracles ahead!

queenieweenie said...

The Weenigs will be fasting and praying for you. I can't imagine what your family is going through at this time. We love you and have grown to love sweet little Mason through your blog.

The G Fam said...

I've talked to everyone at work. There are so many that will be joining you in the fast. They all just wanted to send their love and sadness of this news. Hang in there, and know we are all there for you!
Love,
your heart buddies
P.S. Shauntelle was there for some of our darkest moments and we heart that little family!!!

Heather said...

You are in our thoughts and prayers!

Dianne said...

I read about Mason through Owen's blog. What special children these heart babies are. I started following Gracies's blog and now follow many more. You don't know me, but know that I will continue to keep Mason and your family in my prayers and fast this Sunday.

Staci said...

I also heard about Mason from Owen's blog. My son is an angel who had several heart defects, as well as severe pulmonary hypertension. I took him to Texas Children's to be evaluated for heart-lung transplant. We got half way through the evaluation before Bridger passed away. If you decide to take that opportunity or just have questions about the process you can call me. My number is 801-554-6878. I will also be at the heart walk on the 12th. I will keep you and your sweet boy in my prayers.

Staci (Bridger's mom)

Robin said...

I don't know if it's the 2 month age difference with James, or the similar experiences my sister went thru but I've always felt like Mason's a little kindred spirit. He is absolutely precious and we're praying for him. I also put his name along with your family on the temple prayer roll tonight.

Little Bear & Peanut said...

So sorry about the bad news. We will be fasting for you on Sunday and you will be in our prayers. We found you through Kaidence's blog and are part of IHH.

The Hursts

The Stewart's said...

I linked to your blog from Kaidence's. I'm so sorry you didn't receive the news you wanted. We will keep Mason in our hearts and prayers. Heart hugs, the Stewart's (Alex - HLHS/Transplant)

Claire said...

I will surely be praying for you all.

Cxx

Kingsford Family said...

I will keep Mason and your family in my prayers and will join in fasting as well. May you be blessed with strength, insight, and inspiration at this time.

Michele

cameron said...

Mark and Summer,
We are praying for Mason and all of you tonight.

Cameron and Chelsea

Tann said...

Summer and Mark and Family,
Thank you so much for your faith and example to me and my family. While my family is there closer to yours than myself I miss them so much. I am thankful, however that we can be close at this time to offer support and love. I can't even imagine the emotional trial you must be going through, but I am uplifted and inspired by your testimonies in our heavenly father and His plan for all of us. I do know He has a plan for each and every one of his children, although it is hard for us to realize sometimes. Mine and my family's prayers and fasting are with you at this time. Please let us know if there is anything we can do for you.

Tann, Angela and children.

Amy said...

Best wishes from another heart family in PA. We are remembering Mason and your entire family in our prayers and in our fast today.

When in doubt, I always recommend second opinions.

Amy and David and kids including Daniel (HLHS)

Heidi Ann said...

I found your blog off of Owen's and am so sorry about little Mason. He is absolutely darling by the way. Mason AND you will be in our prayers. Wishing you love and comfort!

cici said...

Dear SUmmer,

I really agree with Owen Simmon's mom Andrea, that Lucile Packard Children's Hospital @ Stanford is the place to check out next. They offer balloon dialation and (pvs@cardio.chboston.org) does not satisfy little Mason's special needs. We all love this little Miracle boy and don't want anyone to give up hope on him.
God Bless you on your new journey.

cici said...

some of my message was deleted... it was supposed to read Stanford also offers 'vavuloplasty' for PVS. If Boston does not offer a solution for your little sweetheart.

Stephanie Peay said...

This is Stephanie (Evans), Steve and Beate's daughter. I heard about your news on Sunday and I just want you to know that my prayers are with you guys. I could never imagine or feel the pain you are going through. I couldn't imagine having this happen to one of my boys. I just want you to know how much you are loved by our whole family and we are thinking about you and praying for you.

Mindi said...

Please accept another hug from a stranger who feels like I know you. When my son was born with a single ventricle heart, my cousin, who lives in your area, sent me the link to your blog. We've been cheering for Mason as we've journeyed along our path as well.

I am so sorry for your news. We all live from appointment to appointment hoping for a smile on each specialist's face don't we? Hang in there, your smiles may still come.

Our prayers are with you and your doctors that you will all be led to the best decisions for Mason.

Much love and support,
Mindi (mom to McKay)

Kerri Pennington said...

Please know that we are praying for sweet Mason. It breaks my heart, as my Mary Clare, also born with a broken heart, is only a few months older than Mason. We will continue to pray for your strength. Thank you for sharing his precious story. I will be keeping up and cheering you on!

Love from SC,
Kerri Pennington
mommy to Mary Clare, HLHS June 2007

Anonymous said...

I feel so sad and can't imagine how you are even feeling right now. What a sweet, special little spirit you have with you. Lots of thoughts and prayers with you.

amanda said...

Mark, Summer & Family-
We heard about your little guy from SanDee (a good friend of ours). What a cutie he is! We just wanted to let you know that we are thinking of you and praying for you during this difficult time.
Much Love,
TeJay & Amanda Rasband

KMJ said...

I am a heart mommy too. Bless you.

Heather's Blog said...

Oh Summer. I'm so sorry. Just know that you have friends and neighbors that love you and will support you!

♥ Michele ♥ said...

Summer,

What a crushing blow it is to get bad news isn't it? We always have such hope in our hearts that things will work out and don't always know why they don't go our way. Mason is a special spirit with a special mission on earth. You were chosen to be his parents and you are doing a great job!! I continue to think of your family all the time. You will be able to weather this storm Summer whatever it may be....you already have. Hope to talk to you very soon!!

Love to you and your family,

Michele

♥Stef said...

I hope in the weeks and months to come you will feel of the Savior's love and divine plan He has for Mason.
Know that so many are praying for you to have peace and comfort during the heart wrenching time. I am so glad I had the opportunity to meet sweet little Mason. I look forward to seeing him again soon!

Mindi D said...

I'm sorry to hear your news. I found your blog through Grants. He and my daughter Libbi were born the same day and spent a couple days together at PCMC. We came home after just days of birth and are now planning on returning on the 25th for Libbi's first surgery, the Glenn. We will keep Mason in our prayers and wish you the best!!

Nikki said...

I read about Mason from Grant's blog and i'm so sorry. I can't even imagine what your entire family is going through.

We will keep you in our prayers.

Nikki
Mom to Dade-Pulmonary Valve Stenosis

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