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Wednesday, August 22, 2012

Love

Pin It Love bears up under anything and everything that comes, is ever ready to believe the best of every person, its hopes are fadeless under all circumstances, and it endures everything without weakening. 



I know you have all been patiently waiting for an update and I'm sorry I have left you hanging. It has been a whirlwind around here. 

Oh God! The children of men take refuge and put their trust under the shadow of Your wings. Psalm 36:7

I won't beat around the bush.
We are home.
Ivy weighed in Monday at 1 pound less than the Monday before. I am sick about this. She is skin and bones, a fright to see without clothes, I cry when I bathe her, I have never seen anything like it and it is probably harder for me to handle than her heart right now because it is in my hands. I spend all of my day feeding her. It is all I do, feed, come up with ways to add even more calories to what she is eating, feed, feed some more. If Ivy wants to eat butter right out of the box, she does. (and she does this) There are no restrictions, its all about the calories and wanting to eat. And yet she continues to lose. It's her heart. A common side effect of heart failure is that the kids do not grow and they lose weight or stop gaining. We spoke again about the G Tube. And again, we will get the G Tube going. But for the safety of Ivy in her current condition, the fewer times she is under anesthesia the better. So since there is another cath planned in a month, they will do it then. Wow, I thought I was overwhelmed with feeds before.... now it is waking me from my sleep! She has no more weight to lose. I mean really, you would have to take bone now! She is finally drinking some whole milk! But she tires so fast so her feeds are still 4 bites, rest, start over, 6 bites, rest, start over, 2 bites, and so on. 



On to her heart and the plan.
We started Sildenofil on Monday. She is doing really well with it. We were told it would suck the last of her energy from her and she would be very sleepy. Well that is how she already was. But actually, she is crazy wide awake! The first 24 hours she was a CRANK POT! A very cute, sweet, snuggly, deliciously adorable little Crank Pot! But she started eating better yesterday afternoon and by 6 last night she was trying her hardest to use her strength to be a little more mobile, laughing and squealing and really really happy. 

We will continue this dose of Sildenofil for 2 weeks. After that she will have another Echo and we will double that dose of Sildenofil. This will be her recomended dose.

After a month of using Sildenofil they will do a Heart Cath to see what the preasures are looking like and how the leaking mitral valve and tricuspid valve are doing.
If they feel that the desired change is occurring (pressures down, less mitral valve and tricuspid valve regurgitation (blood backing up in to the heart) then they will continue with the medication cocktail she is on and do nothing for some time. They always try to treat with medication before surgery.

If it does not work, then she will need open heart surgery to repair one valve (the one they decide is the worse) and do a bypass on the Right Coronary Artery. 

If that does not work, then her last resort would be to have a heart transplant. Something that is always a possibility when a child is on the amount of medications that Ivy is on and still not responding to.

Ok, now stop for a second. No sadness! 
Look how happy this Little Luv Bug is today!












Do you know how long it's been since she has just been silly and giggly and a little clown? Well last night we saw that again! And it was like a God Wink! 



We are keeping our chin up because by golly look at her..... How could we not!!




And we are seeking second opinions because we simply would not sleep at night had we not looked in to every possible option for our sweet tiny munchkin!



And I feel like we have waited for a lot of this for a long time. And that waiting with broken parts that can be fixed might not be the most aggressive plan.

And you all know how much we love our cardiologist and team. So this is no reflection on them. If you are from Az and seeking care, you are in excellent hands a PCH. But as a mom of a child that is having trouble and is in the most critical of days,.. after repair, I need to hear what other doctors are doing in a case like this. We are consulting with Boston. If we are going to leave the state we may as well go to the best and in my research, there is no possible way to deny they are the best, rated #1 in the world! And we hope they agree with the plan here in AZ because we really don't want things to get any crazier than they are. This is already hard stuff. I can't even imagine trying to do what we did in March and April in another state across the country. 


But I will do anything for my girl. I traveled across the world to bring her home! 




And I will travel across the country to get her well! 

And will get through it. 

We jut will!

“He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?” Romans 8:32
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35 comments:

Luciana said...

I am so sure you will. You're such a wonderful mommy. And just LOOK at that shweeet lil jellybean. I just love that Munchkin so much. I'm so happy to see her smile. Thank you for the update. She is just too yummy for words. She is the tiniest yet the grandest Munchkin ever.
xoxo

Yvette said...

Hugs, and prayers for sweet Ivy (and you). People will think you are crazy to fly your child for care (we find out tomorrow if we will be going to Delaware.) We have done this once before and although it seems daunting, it is doable. When I look back on my life this decision will NOT be one of my "what if's". So many times, especially when there is a loss, you will hear people say I would have given anything for it to be different. THis is my anything, and yours.

As a funny aside - we had to do the whole feeding high calorie thing with Brahm. We would slice the butter and call it cheese! (cuz it would make me ill to watch him chomping on the whole stick!)

jennifer said...

I have been waiting for an update on your sweet girl. These pics are adorable! Praying the meds continue to help her feel better. Praying for you both!

Shonni said...

I am so sorry, and will continue to keep you all in our prayers.
loves,
Shonni

Teresa said...

My hubby was just asking how your sweet Ivy was doing!! We will continue to pray for her and your entire family!! She is absolutely beautiful and I don't doubt for a second God has an awesome plan for her life! We will pray that the medications work and that is all the treatment she will need for a very long time!

dawn said...
This comment has been removed by the author.
dawn said...

Oh my goodness my last comment was all bungled. Somehow the code came out in the middle of it.

Oh how I love that smile.

If I could do anything to make your life one tiny bit easier right now I would....just ask.

I know nothing of Boston, just LA and Miami. If you ever end up in Miami Zakheim is the man to see and our home is your home.

ashley said...

My heart just overflows with love and prayers for your precious Ivy. She has a family who will never stop fighting for her. And countless people who pray for her every single day. Those photos of her are so so beautiful.
xo Ashley

Carmen said...

Mary, I have no expertise nor wisdom nor knowledge about the subject but I am just wondering why is a heart transplant the last choice and not the next. Praying for calories and wisdom for the doctors that will be seeing her. And for your heart.

One Happy Mama said...

Oh, it's so good to see your peanut smiling! She has a beautiful smile. I love that she can find joy in the midst of her trouble - that my friend - is the Lord (and a wonderful family, provided by the Lord). We continue to pray, our God is mighty and He is in control. ~Nancy

Anonymous said...

I am right alongside of you in prayer about this little missy Ivy!! what an adorable picture set of her !!Praise God you see her smile and she knows she is sooooo loved!!as always,in continued prayer,Cathy in Illinois

John G. said...

Boston Childrens Hospital in Boston, MA saved my life. I had a one in a million diagnosis and they were great. I agree I would at least consult with them. We are in CT about 2 hours away and would be happy to help you with ideas of places to stay or anything we could help you with. My husband previously lived in that area and if there is anything we can do to assist you we would. If you come to the area let us know.

Hugs from CT
Caroline, John and Hannah Grace

Lisa said...

Thank you for the update, Mary. Ivy looks so beautiful. We are thankful for your God Wink:) Love that you are prepared and covering all bases for her. Follow your heart! You are surrounded in love and prayer by so many.

Lisa Murphy

Laurie said...

I have been following your blog for a while. I think of Ivy daily. My cousin's son has heart issues & they use University of Michigan Mott's Childrens Hospital. He is starting kindergarten this fall & will require more surgeries. They have stayed at the Ronald McDonald House in Ann Arbor. You may wish to send her file for review.

Danny and Julie said...

I read your blog all the time wanting an update on precious Ivy Joy. My daughter is a single ventricle patient having her Fontan procedure (open heart) October 4th. We moved to PA almost one year ago and believe God lead us here for CHOP (children's hospital of Philadelphia). They have the #1 children's hospital in the nation (actually tied with Boston I believe) but they are the #1 pediatric cardiology program in the nation. I have any contact that you might need there. We are in their single ventricle program-the only one of its kind in the nation. Please reach out to me if you need anything at all! My email is julielmann@verizon.net. Also, p,ease keep us in your prayers as well! Only a mom like you knows what i am preparing to face. My daughters first surgery was in China, but this time she has a mommy and daddy who simply adore her and I just pray we have strength and faith as you have.

You and sweet Ivy Joy are in my prayers.

Julie

Jaime said...

Mary, always praying for Ivy and your whole family. I am glad they started Sildenafil, obviously every case is different but it dropped Elisyn's pressures in half after the first 3 months. Also, have they discussed an ng tube for the month she will go without feeds? It is just placed in through the nose, you may remember Elisyn had this following her surgery. Also, have they discussed drinks like Boost Breeze, 250 calories a juice box! Just thoughts here . . I remember those draining days of trying to feed a very sick and frail child. Hang in there Mary!

Danny and Julie said...

I was wrong-Boston is #1, Philadelphia #2, Texas #3. I double checked!

John & Michelle said...

I haven't commented in a while but check on you all every night! We pray for your Ivy every night! I believe the Master is still in the miracle business!

Sophie said...

Oh Mary, she is an absolute doll! Praying for your little love bug and your family.

When my daughter came home from Guatemala I took her to see dr. Todd Ochs, he is a pediatrician that sees many adopted children and has four daughters adopted from China, all with special needs. The one daughter had a very serious heart condition and had her surgery at Children's memorial in Illinois , he also practices in Illinois. If your interested in another opinion he'd be a great person to talk to.
Keeping you in my prayers

Jboo said...

Keeping you all in my prayers.

cathy said...

we have a little team ivy here in chicago and think of you and yours so often. a dear friend sent this testimony and song to us. he was amazed at the beauty here and we were so encouraged that God is still very much in the healing business! couldn't help but call on Him on behalf of miss Ivy. i pray these encourage your heart as well dear lady.
Cathy
http://www.youtube.com/watch?v=Vq6PaeL-WLU&feature=player_embedded
song:http://www.youtube.com/watch?v=Vq6PaeL-WLU&feature=player_embedded

Lori said...

Oh Mary~ I feel as if I am reading about myself and our sweet Rachel in your post... Seeing Rachel without clothing still takes my breath away every time! In fact, in March when her cardiologist saw her in a camp environment for families with heart kids, he was finally convinced that transplant was likely our only viable option. She has literally not gained ANY weight since coming home from China almost a year ago. This fact alone placed her very high on the transplant list, because she is considered "failure to thrive". I was told that the #1 indicator of heart failure is the inability to gain weight. Rachel is on mega doses of sildenafil, though, with no side effects whatsoever! I love that drug! It has bought us precious time and is likely why she is still strong as she waits for that new heart! If need be, we'll walk this transplant road together! Hang in there and know that so many are out here that care! Hugs today! Lori McCary www.HopeforRachel.com

Tera said...

I'm at work so I am trying desparately (and failing) not to cry as I read this post and stare at her beautiful features. I can't even imagine the amount of love combined with worry you have for Ivy. Seeing her smile brings joy to my heart and yet hearing how sick she is makes me so sad. You are a strong momma and God will continue to give you strength as you endure this storm He has placed you in. Your testimony is reaching MANY people! Praying the doctors in Boston can help her!

TanyaLea said...

It's impossible to read this and walk away with a dry eye. When I think of all the silly things I worry about from time to time, and then I look at my sweet friend Mary and her lovely family and all that they are going through with their precious little princess... well, it quickly puts everything into perspective. I'm just glad for the 'God Winks' amidst these days that allow you to see the 'joy' in Ivy Joy and her sweet, silly, happy self. She is truly a gift of love from above and I have no doubt that God is right there with you. I think it is wisdom to get a second opinion and I will be praying along with everyone else for clear answers so that you can walk away feeling even more hope for her future. God bless you, beautiful friend! Keep standing firm on the promises of His Word ~ you are an encouragement to many and I trust that Ivy is going to have a very miraculous testimony to share with others one day... she already does on so many levels. In the meantime, we will continue lifting her up in prayer, that she will begin to gain back some weight and for God's hedge of protection over her organs and her fragile little body. Also praying for His grace to strengthen and sustain you during these sleepless nights. Hang in there!! Sending lots of love and hugs your way! OXOXOXO!!!!!!

Blessings,
~Tanya

Diane said...

Oh Mary, tears. I am so sorry. Hugs. I am STILL praying for that bumblebee miracle!!! And I will keep praying until we see her fly!!!!! Keep believing, Mary!!!

Anonymous said...

Sweet Ivy is such an inspiration! So are you! Keeping you in our prayers little Ivy!
Xo, jordon

Sarah Rae said...

Praying for Ivy! I'm a patient at Childrens Hospital Boston,(I'm 17) and they are seriously the BEST here! I had my share of hospitals and when I came here it was the best care. I have a friend who has had a successful open heart surgery in Boston and is doing great now! Praying for God's direction on where you go.
Xo Sarah

Anonymous said...

A Believing Grandma in Nebraska is praying for your special Ivy and for your family. You are a testimony of HIS faithfulness and grace.
Isaiah 40:28,   Do you not know? Have you not heard? The Everlasting God, the LORD, the Creator of the ends of the earth Does not become weary or tired. His understanding is inscrutable. 29 He gives strength to the weary, And to him who lacks might He increases power. 30 Though youths grow weary and tired, And vigorous young men stumble badly, 31 Yet those who wait for the LORD Will gain new strength; They will   mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.

Anonymous said...

We are praying for your family and for Ivy's health! God gave this little girl such a good Mommy and Daddy and the best siblings ever.

We have a 14 year old we adopted from China 2 years ago and she became a Christian while in China. Ivy has become her special prayer project and she loves to see the video clips and pictures.

God Bless you during this tough journey! Lisa, Brad, Lane and Lena Yi Yi

Kristi said...

Be still my heart! Look at ur little angel...she is precious beyond words!!!! She may be frighteningly thin to you, but look at her glowing skin, growing hair and radiant smile; she is thriving in the love of her family for sure!! Thinking of you guys a lot and will pray that Boston's group concurs with your current group or sees a distinct and solid path forward to ensure Ivy's complete & full recovery!!

KHM said...

Ah, poor baby. Mommy too.

I am going to say that Sil always made Josie "tired and wired" when we were upping the dosage for her.

As far as second opinions, I am going to send to Boston as well, but I also got some strong recommendations for CHOP. I'm going to send to both, plus lucille packard
Prayers for Ivy.

Kristi said...

I think you should consult absolutely anyone who has the expertise to help you find the best treatment for your baby girl!

Thinking of you and your family.

Sharon Ankerich said...

I would pursue any one any where to save that precious baby!!! LOVE her happy little smile!!! Blessings and love!!!

Melody Lietzau said...

Mary

Praying for sweet Ivy. I know the feeling of fighting to save your childs life. We did it with Hannah and now we are doing it with my first born who needs a transplant. My world has been rocked but God wants us in the place where we are totally dependent on him and nothing else. he has plans for our babies and I know he is using Ivy to do a beautiful work in peoples hearts all around her. Love you

Wife of the Prez said...

I know Vanderbilt Children's never seems to get mentioned, but I honestly feel like I should share this.

Our DD, who came home at 35 months old weighing in at 18 lbs. in the hospital after 6 days with us in China eating everything in sight, is doing GREAT! She is a true miracle.

It sounds like from what I've read on your blog that my DD and Ivy's heart defects are very similar.

But their treatment plans were very different. Our DD received a fontan surgery 6 days after we got home back in Sept. 2008. In fact, we will be marking 4 years post-op on Sept. 30.

I remember wondering exactly what the Drs. were doing for Ivy's heart after reading of her transposition and the other defects. I know our Drs. felt the switch was no longer a reasonable plan for our DD due to her long wait for any repairs and some damage done while she waited. Thankfully, her pressures were good thanks to her God-given pulmonary stenosis.

Her valve was malformed, but it doesn't matter since it has been bypassed with the anatomy of a fontan. I don't know if a child can have a fontan after having another OHS, but I thought I would mention it.

Our surgeon at Vandy is Dr. David Bichell. http://www.childrenshospital.vanderbilt.org/directory/profile/david-bichell.4712

On October 4, our second DD, our little 2YO baby girl home from China since February, will also undergo a fontan with Dr. Bichell.

I don't know if you are still seeking consults, but I would highly recommend Dr. Bichell. We were flying blind back in 2008 when he told us he and the team felt the fontan was our big girl's only viable option surgically, but I am so thankful we had a peace that this was best for her. She sailed through recovery and came home 8 days post-op and has never looked back. Due to her being born also with cl/cp, she has endured multiple surgeries post OHS and has never had an issue but one minor one.

I continue to pray for Ivy and check in regularly but rarely comment. Life is crazy busy here too and now with two surgeries in a month just 8 days apart (son is having surgery 8 days before baby girl), I am just feeling plain crazy!

If you wanted to email me, my addy is cljjs (at) yahoo (dot) com.

Ivy is a precious child and I am so grateful she is home with her family, and has so many around her expressing unconditional love to her!

 
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