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Tuesday, September 11, 2012

Holding my breath and pressing on

Pin It I thought I would get to this post sooner but life has me under arrest right now and I can't seem to escape much. 
So I have decided to skip some of the details and go right to the plan. I heard back from Boston Cardiologist. I had a very long conversation with the very man our baby girl will be in the care of when the time comes. We were told that, left as is, using only medication that is not working, we do not have much time left with Ivy and that we do need to move fairly fast. They feel that while the risk of this surgery is quite huge, they have great expertise and she has a great fighting history and they feel it is the best route for her. Its aggressive, and very different from the plan here in Phoenix. Ivy's heart squeeze is terrible and the only way for it to ever have squeeze is to get blood flowing through her Right Coronary Artery. Now before I go on I need to quickly say (because I am forgetful and might not get to it later) In address to the comment that it is difficult to read the blog with the lines. Im super sorry about those lines, I actually never had noticed and you are the first to mention it. I am in great need of revamping my blog (sweet Ivy needs to get on that header and , well the name, hello? lol).  I would love to have an all white background. But since Im not too savy that way and it costs money that needs to go to Ivy right now...... Darn pink with lines it is for now.  I will try to make the writing larger because it is probably annoying everyone and I just never knew it. Sorry friends! 
Ok now to Wife of the Prez, that commented about your sweet heart girl having the Fontan for the same heart defect as Ivy.... Im guessing there are some signifigant differences between them or she would have had one of these two, the Rostelli or the Nikaido. The Nikaido is the best choice for a heart like Ivy's. They would never do a Fontan on a Double outlet Right Ventricle, Pulmonary artery hypoplasia, 19mm VSD........ Im guessing your daughter might be a single ventricle? Thus making her a Fontan candidate. I know we have chatted before as we  were on a similar timeline with bringing our last 2 littles home, and you beat me.    :)~ Your kiddos are absolutely adorable!!!!! Feel free to email me privately and I can share more. Im in awe of your girl coming home in 8 days!!! WOW! (I am dreaming that for Ivy this time!)
Ok on to the plan.
Dr. Del Nido and Dr Baird will be performing Ivy's open heart surgery. Dr Baird specializes in specific valve repairs and he will be working right alongside Dr Del Nido. They are both Harvard Medical instructors in surgery. Del Nido is the head of the cardiac program at Childrens Hospital Boston. She will be in VERY good hands!! I figured if we are going all the way to Boston I am requesting the very best. They said to plan on being in the hospital 4 weeks. I pray it is much shorter but honestly 4 weeks is nothing at this point. Show me my babies heart beating after surgery and I will be one content mama!!
The repair~ 
Remove the patch they believe to be sewn in such a way that the tricuspid valve is now tethered to it, and the mitral valve as well. Re do the entire patch. Repair the damaged tricuspid and mitral valves. Reposition the Coronary Artery and place a shunt in it. If this works then it will get blood flow, if it does not then they will need to perform a bypass. Not sure how they will do that as they would use a mammory valve and hers seems to be missing... Please specifically pray the repositioning and adding a shunt solves the problem. Any surgery involving re-doing something is very high risk, but that coronary artery is where the huge risk is. Please pray specifically for good results with that. Again, I am shaking like a leaf 24/7, anxious as all get out, yet at such peace with this plan and how we ended up here. 

                                       
The thought of her being opened up again so soon, ugh;sjfdpejfpevenqvi..... but it will be ok, I know it will. It is just hard to watch that pain and discomfort that first week. Mama Bear I am sure will be hard at work again as they discover in Boston that my tiny girl requires the sedation of very large Mustang in order to be comfortable. 

Our entire family will be going to Boston to rally around our precious gift from God as He pulls her through this surgery and gives her a whole new life filled with HOPE! We feel there is no other way to go through this, other than together. Let me tell you, we LOVE this child SO very much and it might get a little loud and a lot tearful when they take her from us and in to surgery... I can barely breath typing this. It's like I find myself holding my breath each time I envision that day. But I also found myself unable to breath when the Doctors at Boston told me that we do not even have months with Ivy if we continue the path she is on. Whole lot of breath holding going on!
I don't tell you this for sorry feelings or hang in there wishes. Until you have been right here where we are, you really just can not even fathom. I do tell you because I know she is so loved around the world and you are all a huge vessel that God used to help hold us together last time. Can we do this again? Can we bring on the Team Ivy and pray this Beautiful Angel to full health? 




I don't know why things had to go so rough for this baby or so long before we got to here, but doesn't really matter now. All things will be understood in the end. All things both good and bad. And until that time, we are where we are for a reason and we will praise our Father right through every last drop of this storm. And on that day, His will will be done and we will continue to praise Him!!!
So that's it. We anxiously wait for the call that says we have insurance coverage details handled, costs discussed and are ready to schedule in the O.R. 
It could be as early as the last week in September and it could be as late as the 3rd week in October. The sooner the better, yet I just held my breath again. Please pray for a peace and calm for all of us. We are only as strong as human can be. And our heart are aching. 
Have I mentioned the depth of our love for our Little Ivy Joy, holding breath again!

Thank you all for your love and support! We are being blessed by offers of airline miles and meals, help with the bigs and visits in Boston. We are so eternally grateful!!
After the first week, Bryan will head back home so the bigs can go back to school and Bryan can go back to work. Lexi, and my oldest daughter Quincie and I will stay in Boston. Quincie, God bless this precious girl, will care for Lexi while I remain with Ivy. She will then give me little breaks so that I can spend some time with Lexi. If it gets too lengthy and she needs to head home then my mom will likely come out to relieve her. Quincie is in her last year at ASU but takes all of her classes (full schedule) on line due to moving to Virginia. Please pray that she can continue to do school even while caring for Lexi because if that is not working out so well, she will need to go home and I will be in a big pinch! 

Thank you again! 




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41 comments:

Paige said...

holding my breath too!! You know your family will have soooooo many prayers as you take on this next journey to help your Ivy!! And yes you are so right, I CANNOT fathom what must go through your heart as you hold that sweet baby. I have a song for you that I can't remember the name that I think of your family every time it comes on when I run. I'll send it to you in a sec! Prayers in Tennessee to our Huge God!!

Jodee said...

Bless her sweet heart. Sending big hugs and prayers from Nebraska!

Paige said...

Mary it is Timshel but Mumford and Sons (Sigh No More). It just makes me think of sweet Ivy and how none of us truly get what you are going through but can pray and lift her up to our Lord daily since He know EXACTLY what he is up to. Hugs to your family!!!

Colleen said...

First let me say that I never noticed the pink lines until now, ugh!!! My name is Colleen and I am in the process of adopting from India. I have been following your blog for quite awhile. Poor little Ivy has endured so much in her short life but man is she a fighter. I am praying for God to continue to lift you all up. He is great! God Bless

Rebekah said...

Lifting up Ivy and your family in prayer. Praying for big miracles for your precious girl and prayers for you and your family to sustain you through the difficult days ahead. So thankful you have such support through your friends and your family.

Luciana said...

Oh Mary, I'm always right here following along and praying for my sweet Jellybean. I will be a nervous wreck again, but faithfully here encouraging and praying.
Hugs xoxo (from China this time)

Luciana

Yvette said...

Holding our breath and tears in our eyes as we pray for your sweet girl. Do you know Tommy's family? They are in Seattle (I think) and had to make the trek to Boston last year. He is doing incredibly well.

Praying God's richest blessings on you. Although we are holding our kids super tight as we face our own impending surgery, you remind us how special they all are.

Amy said...

Oh Mary. I will lift you up, as I have since I found your blog. I don't know you, but your family has touched me so much. God bless you for all you have done already for Ivy & for what you will do for her forever more. Praying!!

Kim said...

Lifting everyone up in prayer!! I will be sharing this with my, "Mom's In Prayer" group tomorrow and you can be assured that Ivy will be covered in prayers tomorrow morning by so many!! Our Father is holding all of you in the palm of His hands. We worship an AWESOME God and nothing is impossible and He WILL breath new life into Ivy's precious little heart!

Anonymous said...

It sounds like you are doing a beautiful job finding the very best treatment for Ivy and planning and arranging it all. Despite all she is going through, she is very blessed to have such a loving a devoted mother. We will be praying for you all. - Dale (and Sophie Changlu)

ashley said...

oh Mary, Ivy has my most fervent prayers! I honestly can not imagine what this feels like for all of you. My heart is full of love and prayers for Ivy and her amazing family. God is with you. He is everything!!
xo Ashley

Anonymous said...

Tears of hope continue to be with you and your whole family.

Gloria
-Mountain View, CA

Jboo said...

Praying for you, your sweet Ivy and entire family.

janet

Desiree' said...

praying for you and yours!! And if you want a blog redo I can help you..no charge!! IM me through FB or blogger~

Patty said...

Your prayers are heard from the MOST HIGH who created your Precious little Ivy. She is already healing and touching lives in ways that no one will ever fathom. Please keep us posted....we will all be fighting for Ivy and your family. And we will hold our breathes until she is healed and made the little girl she was to become. God bless you

kim647 said...

Prayers every second of everyday for your sweet family. Thank you for sharing your story with us. Please know that we are standing with you and your family.

maria said...

Although we do not have a child with a special heart such as your sweet and precious Ivy, our son did have a life threatening illness so we understand all too well the breath holding and the hurt thinking of your child enduring this next step in her healing. Please know your family is in our prayers. We pray for Ivy's healing, her Drs., and strength for you and your family. In Christ, Maria

TDE said...

Praying for God to give you and your family peace that passes all understanding. Peace that only HE can give. Praying for strength and comfort for you all. Praying that God will guide the surgeon's hands. Praying for wisdom and discernment for all those involved in Ivy's care.
Tonia
Alabama

Living Benson said...

I held my breath reading your post. I don't even know you, but I know that I would give you the biggest hug if I could. Bless you all and those involved. Prayers go out to little Ivy. And prayers for strength and peace to you and your family.

You are an amazing family that was perfectly placed together.

DiJo said...

I am so thankful God's got this entire trip and Ivy's life in His control!!!! I am trusting that this is yet another amazing peace of the story that He has orchestrated for Ivy Joy!!!!

Love you,
Me

Kath said...

We gotcha covered here and have continued to pray for your family and sweet Ivy throughout this whole healing process. We are. Also in this until she is home, healed and playing in the warm AZ sunshine. Expecting a fight and a miracle! Kath

Anonymous said...

Continued prayers and HOPE and LOVE coming to you and your loved ones!! Raising Ivy JOY and all up to God in prayer for all her and your needs! Give her hugs ,lots of them ,, She is a FIGHTER!! GOD IS GOOD and LOVES us ALL!! Cathy in Illinois

From This Moment said...

Praying for precious Ivy and your entire family.

Anonymous said...

I will continue to Pray for Ivy, not sure if you remember me or not, but I emailed you a while back when I was pregnant with Maddie who was diagnosed with TOF at 20 weeks of pregnancy. She was born May 8th 2012 and lived for 7hrs and 23 min. Her TOF was too severe. But I am at peace that she is my angel watching over me. I will pray to My Maddie to be Ivy's angel and watch over her and hold her hand through her surgery. My heart goes out to you, I have followed her story through out my entire pregnancy and still continue to do so. I think of your little one often. I know My Maddie will give her strength and carry her! Amen - Alexis Burke PHX AZ

lesmdes said...

I will pray for this child with everything I have!

Kieren said...

I have been following along with your family since Ivy's last surgery and I am continuing to pray hard for your precious little one! I don't know you but I feel a connection through our children as our new little guy also has CHD and oh he and Ivy resemble each other so much in their precious faces. I pray for peace and comfort for you all as you go through this next surgery. Our God is an awesome God!

"Do not fear, for I am with you;
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you in My righteous right hand."

Isaiah 41:10

Anonymous said...

I will faithfully be praying for Ivy and your family as you walk through this very difficult time. I know you are clinging to the LORD every step of the way. In HIS strength you will be victorious!

“He uses our problems for His miracles. This was my first lesson in learning to trust Him completely…”
― Corrie ten Boom, Tramp for the Lord
Believing Grandma in Nebraska

jennifer said...

Praying for all of you. So happy God has all of you in his hand.

Big Happy Family said...

Lump in my throat, you write so beautifully and with such sweetness. You know we love you guys, and keep your girl in our prayers. Hugs, J

Pink Velvet Mommy said...

All I can say is I will not stop thinking or praying for Ivy and your family until I know she is out and on the road to recovery!! I can't even imagine the feelings you are having and I am so sorry you are faced with such decisions....it sounds like you have found the ABSOLUTE BEST that can take care of your girl and her sweet heart!!! Please hug her and tell her we are all praying for her and I feel so strongly that she is going to be just fine....remember she is a super hero in PINK!!!!

Wife of the Prez said...

OK, makes more sense now! These special hearts are just that: UNIQUE and SPECIAL!!!

I am SO THANKFUL you are going to Boston. I am so thankful they have a PLAN for Ivy!!! PRAISE GOD!!!

More Prayers in TN from us!

And yes, I'll be praying for Miss Ivy to go home in 8 days.

Let me tell you our Susannah was VERY SICK. She was in major heart failure with sats in the 40s when her operation was done.

The Drs. are STILL talking about her 8-day hospital stay. And they are telling us "this is unheard of; please prepare for 2-4 weeks for your baby girl; that is the NORM and it can be longer."

So, yeah, 8 days shocked us all. But God is GOD and He is bigger than all of it.

He made Ivy's heart and I just know He has a big plan. I guess He just maybe wants to show off in a bigger way!!!

HUGS and Prayers!!!!!! Go IVY GO!!!

Sammons said...

Of course I remember you Alexis, and your sweet maddie, I will never forget her. I went to your blog to see if i would find you at PCH when Ivy was there for a heart cath in June. My heart stopped for a moment as I read that she had not survived past her first day in this world. Precious baby girl was healed the right way, the first time, by Jesus himself and she will never know or experience pain. And yet still, I cried for her life, for her family, for your pain. No matter how much we trust God, it hurts so much to see your baby in pain, to lose the baby you haven't even had a chance to care for. I am so sorry for your loss and your pain. I love the way you honored her life and gracefully journaled through your grief. She had a purpose and you will forever be her wonderful mommy! Thank you for your kind and comforting words and prayers.
Mary

The Harlicka Family said...

Mary,
You all can count on continued prayers, big, HUGE prayers from our family in Atlanta, and from your "blog family"! We have all fallen in love with sweet, Ivy Joy & her adorable jie jie, Lexi! We all cannot wait to see posts of the two of them running around together!! Words can also not express what an inspiration both spiritually and as a momma you have been to me and I'm sure many others! Will be praying for everything she needs and more!
Much love,
The Harlicka Family

Tera said...

Breath holding here too. I read your post yesterday and was so speechless, I didn't even remember to comment! Praying for strength for you and for Ivy's heart. I just cannot fathom what you are going through! Praying for His will and for His name to be glorified!!

Carmen said...

God placed that little girl in the perfect family. For a purpose. His good and perfect will.

Sending love and prayers for that sweet girl.

the meaklims said...

Mary, you are right. I sit here in China, thinking about you and sweet Ivy Joy, like I do often... reading this just breaks my heart. I am so glad you tell us all this, of course we're thinking about you too, your whole fmaily. But I truly believe in the power of prayer... the miracle our Lord can perform. I am praying for a miracle for your beautiful sweet little girl. May the Lord be with you all, but especially her in the coming days and weeks.

Jill xoxox

PS - I would love to freshen up your blog for you, if you would like. It won;t be too fancy, but hopefully something you like. Just email me your email and password to log in and tell me what colours you like. :) Oh yes, and change your passeord before sending it to me, so I don't have the original... meaklim@primus.ca

I will be home from China in a week. :)

betsy said...

We're sending much strength, hope and healing to Ivy and her entire family...

Shay Ankerich said...

There are no words to say but just that I will be praying for every single detail in this whole journey! I am praying for complete healing and ultimate glory to God!!! I love you and am thinking of you always!!!
In His GREAT Love,
Sharon

Anonymous said...

Praying for every need big and small!
Joy

Adam Reichert said...

Hi Mary,

Blessings to your family as you wait for your next call. I met you, your son & Ivy in China. We were in your BAAS group in Guangzhou. I have followed Ivy's progress since coming home. My family prays for her recovery and repair often. Best wishes for her upcoming surgery!
Colleen, Kevin, Adam, Kaylee, and Aubree

Melissa said...

Hello Mary, I clicked on your link in the prayer chain over at 3 Kids (Lucy) because I also have a daughter who was born with CHD's. Between last night and this morning I have skimmed through some of your blog. What a beautiful family you have. I wanted to quickly share with you that as I was reading your latest post, all those feelings came flooding back to me. I know exactly what you mean when you say you are holding your breath/the air is being squeezed out of you. My daughter (7.5 yrs) just had her 4 year anniversary September 4th of having her heart "saved" in Boston by Dr. Del Nido. She also was born with a large VSD, ASD, PS, Dextrocardia, TGA-L type, DORV. Pure craziness right there. She had a BT Shunt at 4 days old and a double Glenn at 8 months (2 Superior Venacava). Our cardiologist here in CT wanted to do a Fontan-ish type repair that would have only given her 1.5 ventricle. Like your sweet baby girl, my daughter was 3 years and she was wasting away before my eyes. She stopped walking up stairs and climbed them slowly instead. She forgot words like a stroke victim. She slowed her eating. It was frightening. At some point, God whispered in my ear. That is my only explanation for looking for a second opinion! And so happy we did. Boston is phenomenal! And Dr. Del Nido is the kindest, most humble surgeon I have ever met. He truly has a passion for fixing little hearts and I truly believe that he knows his talent comes directly from God. He also had to "take down" my daughter's double Glenn and put her pulmonary arteries back where they belonged. You are right, any re-doing is risky, especially because of scar tissue. My daughter was in Boston for 3 weeks. That was with smooth sailing. She had a Rastelli-Mustard, including placing a baffle and a new valve, patching the holes, switching her arteries and taking down her Glenn. I can tell you that she just played in her second soccer game this weekend and you couldn't pick her out of any of the other children. God is great. I'll be praying for your sweet baby. For a great blog on being in the Boston Cardiac Unit, take a look at http://miracleryker.blogspot.com/ His mom is great at writing what their experience has been. He is also a patient of Dr. Del Nido.

Prayers to you!

 
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