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Friday, August 24, 2012

The girls!

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Just pictures tonight!
Things are still going great.
I am a new trunk keeper for Georgia Grace Clothing so I thought I would take some pictures of the littles in the new line that starts selling this Saturday. (Today now)
The sun went down too fast for me and it was too hot outside to try and catch it. Then I forgot to turn on my flash!!! Oh ya, I'm a winner :)


She likes to hold lollipops, not eat them!









                                                                    Sassy girl!


Time out? 

                                      Can't keep up with her today!
                                               Love these girly colors!








                         Finally caught her on the ladder!

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3 days of Sildenafil

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I know it's early to report anything but I am so very grateful for the past 3 days and just wanted to share. We were told it would make her even more tired and suck the last of her energy from her. Well actually, it's been quite the opposite! In fact she's kind of crazy! Ivy wakes up 6am now! And she is wide awake until her nap. She naps 2 hours max and is wide awake until bed time. She cries when I put her to bed. She cries for about 1 to 2 minutes and then she is OUT. She has never cried at bed time. I think she is having such a great time she can't bare the thought of sleeping. I love it! She is loud now. Before her voice was pretty quiet but now every sound she makes has one volume, Loud! She is happy! Really giggly and very funny. She still has the silent laugh, you have to look at her to see if she is laughing because it really has pretty much no sound. It's very funny to watch. She thinks she is pretty funny too. And she likes to spin and swing and roll around now. Something she cringed at before. She is eating really well. She is drinking a little whole milk now. Before that she would only drink water. No juice, no milk, only water! 
PCH is getting her records from the past 5 months all together and ready to send out. Our cardiologist and the office has been so very helpful, supportive and encouraging of our decision to seek other opinions. It will be a few weeks before we hear from any of the doctors. 
Sweet little things to end my post with~
All about Ivy
She has the sweetest voice and disposition. She always says I love you!
She loves to kiss Lexi and she tries to sit on her lap and Lexi tells her she isn't big enough to hold her yet :)
She does not miss anything, she listens in on conversations :) Tonight Cassidy and I were talking about her knee that has been bothering her. Ivy was in my arms and she immediately lifted up her leg, grabbed her knee and said, "Hurts Mama, Knee hurts!" I had to kiss it better many times through the night. Such a character! If Lexi asks for cheese Ivy asks for cheese, if Lexi wants to be held, Ivy needs to be held, If Lexi wants Diego on, Ivy says, "me too". She is smart as can be and she talks very clear for the most part. She makes small sentences now, like Cass, where are you? Blankie, Where are you? Mama, more fishies. Mama Hold you (instead of hold me haha) She loves the learning tower, I'm so glad I bought that thing!!! She loves to get her teeth brushed and she is so girly! She loves jewelry and never lets us take her flower out of her hair! She wants only pretty clothes on and she likes to put on lotion. She asks every day for earrings. She thinks it is hilarious that I can sing the theme songs from her favorite nick jr and disney junior shows. She loves animals!! This is brand new for her. She is not afraid of dogs or any animals any more. (Remember the giraffe at the Safari Park in China?) As soon as the weather permits we are taking her to the zoo! She has gone from only being able to sit and rest on the couch and sleeping most of the time to almost doing a summersault on her own. She is still really weak, she makes a lot of grunts and groans as she goes from sitting to standing or crawls around but she for some reason loves to practice summersaults and head stands! I realize that every time we get on a new heart med she has these surges and I get all crazy and excited and then she crashes. I'm not in any way trying to say she is better or the Sildenofil has solved the problem, She is sick and she needs her valves repaired and she is in heart failure. But Tuesday was great, Wednesday greater and today the best of all. And Im going to enjoy the party while we wait to see whats next. And if we have to go away..... It's going to rock all of our worlds so I'm enjoying the moment! We all are!

Your questions
KHM We are doing those 2 hospitals as well. (and one other)

Lisa, Brad, and Lena Yi Yi  I would love to be email friends with Lena Yi Yi! How blessed we are to have her praying and rooting for Ivy Joy!

Believing Grandma In Nebraska, Thank you for that!

Lori I agree, It has to be the heart failure. She eats well. She just burns it all just surviving.

Cathy, that was awesome! I love Ricardo! I will be leaving Ivy's ~It's not over story soon!

Julie, I will be praying for precious Olivia too! We have contacted Chop as well.

Jaime, I emailed you :)

Carmen, Ivy's heart is still working. She is not yet a candidate for a transplant. They always try to medicate, repair, then replace. There are not as many hearts donated as there are people needing hearts so it is a very delicate process. I know it seems easy but once you have used up all other options is the only time they will put you on that list. And if you reject that heart then it becomes more likely you will reject it again thus leaving no other resource. And finally, they do not last forever, sometimes only 10 years. Ivy is so young she would require several in her lifetime. So while we certainly realize that we could end up traveling that road. We know it is not time to travel it yet. 

And everyone else, Thank you again for your prayers, for sharing with your family, friends, churches and prayer groups! Thank you for checking in and for all of your support. We are blessed!!!

 
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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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Sunday, August 19, 2012

The littlest things

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Tiny feet, Tiny voice, Tiny smiles, I love you's and laughter. For these things I am so grateful!!! Pin It

Friday, August 17, 2012

Wrapping up the week

Pin It Is it really Friday? Seems like the week just all piled in to one long day. My mom leaves tomorrow and I feel like she just got here yesterday. I was so sad that Ivy got sick right before she came, I was looking forward to her finally getting to see Ivy eating and talking and charming everyone around her. Every time she has been with her she has been very weak and sick. Well, as always, God knew my mom needed to be here this week. She has been such a huge support as we weed through our next steps with little miss miracle and she has taken supreme care of our family so that this mama could spend the week doing nothing but love on her babies!!! What a huge blessing she is. Mom, I love you with all of my heart and I would not be the mom I am today if not for you!


As of this morning Ivy was still not doing great however by this evening she was smiling and talking and eating a little more and certainly feeling a whole lot more like herself. Over this past week she has spent most of her time sleeping the day away. I kept her with us where ever we were so she could hear us and feels us. So very grateful that she is showing signs of getting over her cold, little by little. Her cough is terrible and the sad faces she makes due to the pain it causes is enough to leave us both crying.





 She sleeps and she sleeps! It has been very scary at times!


 A very sweet friend of ours sent over these prayer buckets for the girls/family. Such a precious little gift!


 Our (big) little girl has been so helpful with everything Ivy. But the girls are especially cute at bed time. Always making sure the other is nearby. Stories are always on Lexi's bed, followed by tickles, prayers and lights out. Lexi makes sure Ivy gets the same amount of everything even if Ivy would rather go to sleep :)
She is already asleep in her bed when I took these pictures. Sweet baby loves her sleep :(



 Longing for the day that her life does not revolve around medications and Echo's and Cardiology visit. I think the longest she has ever gone between Echo's is 3 weeks. That seems crazy to me. I am certain it seems even crazier to Ivy!



 Miss Lexi started school this week! What a blessing for her to have a 3 hour break from all of the nursing going on at the home. Time to be with friends, spread her own wings and not worry about her baby sis or helping mommy.








 Ivy has facial swelling again. Her limbs are still normal. 


Swollen or not, I think she looks like a little angel.

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Wednesday, August 15, 2012

6 months together! Forever Family, Forever our baby

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I am desperately attempting to keep the thick emotion out of 

this post, but my heart is aching with it. Baby girl was handed 

to me 6 months ago today. I knew that 6 months from that 

day, she would finally be healthy. That all her waiting would 

be over and she would finally have health. 6 months later, she 

does not have the endurance to walk, to get in to things, not 

able to maintain enough stamina to get through a simple 

horsey ride on my knee. I do not want to be angry 

about her crushed coronary artery and I have no right to be, 

but I do have to grieve. And so this week I have allowed 

myself that. I wish I had not. And yet at least now, I can move 

on. Shaken? No way! Give up? Never! Frustrated? You bet! 

But there is nothing, nothing, nothing, I would not do for my 

perfectly perfect little girl!






Our scheduled upcoming Thursday appointment happened 

yesterday due to a 104 temperature and a cough that just 

persists.  

And so it was time to ask more questions, even if the answers 

were the last thing I wanted to hear.



What I was told is that Ivy's valve leakage, mitral valve 

regurgitation, is heavy. Just as heavy, if not heavier. It is 

backing up. Her heart failure is now elevated. Her body is 

tired. She is on the highest dose of every medication possible 

and she should be getting better. But she is not. She catches 

everything the wind blows her way. She has strep right now. 

She is not able to do more than stand in one place or sit and 

color or read books without tiring so much that she needs 

another nap. She occasionally gets a sudden spurt of energy 

and I jump for joy and think everything is honky. I post on 

here that she is doing amazing and getting better..... but it 

never lasts. A week or two later she is back on the couch, 

back to dozing off 5 or 6 times during a day, back to having 

cough attacks and back to being sick! 


And I wanted answers... So I asked questions? Why is she 

not getting better? Where are we going? What is the plan?

The reply~ "Mary, you are right, she is just not getting better. 

Based on all the medication she is on and has been taking for 

a while now, she should be doing really well. 

But she isn't.

We are going to discuss attempting to repair that leaky valve.

But Ivy really is at a huge risk with that crushed right coronary 

artery and there is nothing we can do about it. Bypass on a 

child like her leaves grim results. But she has a pacemaker so 

you won't have to worry about sudden death." 

And then she said again, "She is at a very high risk."   I asked 

what the plan was for that? The time frame, the other 

options? She said that they would be meeting this week to 

discuss Ivy and when they see Ivy again next Monday they 

could better answer that question. 





Will you pray with me?  As I relinquish our tiniest treasure to 



her Maker and plead miraculous healing. 



You have traveled this journey with us, often carrying our 


heavy burden. You too have this child endeared in your heart. 



I won't pretend to understand God's plan. And yet we cling to 


the knowledge that He is loving and continues to be in control.   



Despite the lack of control we feel. 





Next week, as you get set to start your babies in  




school or whatever new endeavor you may have ahead. Take 


look at all you have, all they have. And give a huge thanks 


for even the fights your children have. For the broken glass 


and fingerprints everywhere, for the fussy times and the 


temper tantrums. For the power struggles and the 


disobedience. For the foot stomping and the messy rooms.  


Right now we give thanks for the good fight our daughter 


struggles with every single day. I would rather it be a fight 


between my children, but instead it is a daily fight, for Ivy, to 


simply live.


"Wait on the Lord, be of good courage, and He shall 


strengthen your heart. Wait, I say, on the Lord." Psalms27:14




Specific prayer request~




Please pray for God given wisdom for her Dr's as they review 


her current and past Echo's, blood work and last Cath 


findings. It will be viewed by her surgeon, Dr Nigro, her 


Cardiologist, Dr Pophal and her Nurse Practitioner. There 


will obviously be very important decisions being made on her 


behalf. Pray specifically that God will guide each one involved 


in her care. That everything would be uncovered, nothing 


would be missed. Pray for God's undeniable insight for this 


medical staff.




"Any man can sing in the day.  When the cup is full, man 


draws inspiration from it.  When wealth rolls in abundance 


around him, any man can praise the God who gives a 


plenteous harvest… The difficulty is for music to swell forth 


when no wind is stirring.  It is easy to sing when we can read 


the notes by daylight; but he is skillful who sings when there is 


not a ray of light to read by -- who sings from the heart… Lay 


me upon the bed of languishing, and how shall I then chant 


God's high praises, unless He Himself give me the song?  No, 


it is not in man's power to sing when all is 



adverse, unless an altar-coal shall touch his lip… Then, since 


our Maker gives 'songs in the night' (Job 35:10), let us wait 


upon Him for the music."     Charles Spurgeon.


Praying that God will bring forth music from this difficult but 


forever worth it journey. Pin It

Thursday, August 9, 2012

My Little Lexi, Doing What She Loves To Do!

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Dance






















Don't you wish you could freeze time? Even if just for a while? To soak up every ounce of the joy that children breathe in and out? To memorize every sweet part of them and etch it in your very soul? I do! So very thankful for cameras and computers and journals and every single second God gives me! Pin It
 
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