An AMAZING Day!!!!

Pin It Hi Everyone!

It's Diana here with the privilege of posting for Mary!!!! At 2:58 (12:58 AZ time) today I received this amazing text from Ivy's Mama:

"When Christ performs miracles, he doesn't mess around! He answers our prayers in BIG ways that say YES, I AM GOD!! Ivy Joy is OFF the ventilator, OFF!"

Some of you may not know that Ivy started the morning off with a fever that was concerning! Mary asked, and many of us prayed, for that fever to vanish! At 10:49 (8:49 AZ time) I got a message that her fever was gone!!! Another answered prayer and a bead earned for the miracles that God is doing in this precious child! I hope you all realize we are witnessing God in action here! It is amazing what He has done since Monday!!!! I am in awe and reminded that ALL things are possible with God when we ask.. I can't wait for the text when all of the wires and tubes are gone and Ivy is awake and eating the chocolates that are secretly hidden away for her! I have a feeling it won't be long!! In fact, I am counting on it!!! How amazing would it be for Ivy Joy to be home for Easter!!!! It IS possible!!! And, that is what I am praying for!

Ivy as she fell back to sleep once the Vent was removed!!

On behalf of Mary and Bryan, thank you again for interceding for Ivy Joy!!!! God is answering with an exclamation point!!!!!

Tomorrow is a new day, and we pray another special day full of blessings for Ivy Joy and her beautiful family!

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To Him be the glory

Pin It As I watch her chest rise and fall, my hands tremble at the miracle of her life. We are witnesses to Gods love in action! Witnesses of Gods answered prayer and faithfulness. 

 I fall before Him in thanksgiving and can hardly breath as I think of the magnitude of my love for this little girl. I held her for the first time 46 days ago. I told her I love her over 100 times that day and I wept as I kissed her and promised to love her forever no matter what. And my love for her has taught me that faith is undefinable, and love is indescribable.

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OFF ECMO

Pin It I Will let this photo speak for itself! This is what I walked in to at 5am this morning. Lots of oozing, sorry.

And then the miracles continued. Prayers were spoken and prayers were answered!!!!!

He shielded him and cared for him; he guarded him as the apple of his eye, like and eagle that stirs up its nest and hovers over it's young, that spreads its wings to catch them and carries them on its pinions. Deut. 32:10-11

ECMO is off, Chest is closed, Baby is BEAUTIFUL!!!

Our doctor was proud to tell us that he sewed her up without disturbing the flower in her hair. 

 So much beautiful artwork on the walls from students at Chapel Hill and Highland Park!! We love them all!!!

Don't let anyone look down on you because you are young, but set an example for the beleivers, in speech, in life, in love, in faith and in purity. 1 Tim. 4:12

 The Lord is good, a refuge in times of trouble. He cares for those who trust in him. Nahum 1:7

Tonight as I type this, Ivy is getting a new pic line. The one in her neck clotted. So glad she is still fully sedated. They are attempting to do this in her room, if they can't get it they will need to take her to radiology. Her veins are so tiny. 

I can see her heart beating through her chest. It's an amazing sight I tell you. I think I'm going to get a little video of it, just because. She had some major bleeding from her groin where the line was for her cath last night. But our absolutely amazing favorite nurse ever Miss Jaime got the bleeding to stop and got our girl all cleaned up and beautiful. My sis was here all day (gosh she's the greatest sister!), She has made it very clear that we are VERY lucky to have Miss Jaime!! She really is a doll. 

Our prayers were answered today in such a big big way. Ivy had a BIG day!!!!!  Her lungs are hanging in there, we have some junk in the right one still and she is getting suctioning and recruiting every 4 hours, BUT 60 hours ago she came out of a very major surgery and had been on bypass 13 hours!!! She is only 3 days post op!  Just look at that picture, have you ever seen anything more beautiful and amazing? 

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Pinch Me!

Pin It I really didn't expect to be delivering news of this magnitude so soon. It seems like today is the same day as yesterday and the day before! 
The great news is that the stint placed yesterday is doing what they had hoped it would do and they are planing on taking Ivy off of ECMO tomorrow morning!!! She has had such a peaceful day of rest. Tomorrow is a Big Day for Tiny Miss!! I'm off to get some rest! 
Short and sweet post from a very tired, very happy mommy!!!


This picture was taken today. She is more swollen than yesterday.

These were taken yesterday. So the first day after surgery.

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A few steps back

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Good morning! I love how the Joy really does come in the morning! Not because something major happens overnight but because it's another day, another chance to live, to love, to do things right, to be a blessing, to breath.... Since Ivy is not allowed to wake up yet we are taking advantage of our bed at RMH and sleeping a few hours. When I walk in to her room in the morning~ OH THE JOY!!! My baby is here, she is alive, she is a living testimony to the Grace and incomprehensible Love of the Father!! She is my child, the one God knit in her mothers womb knowing all along that it would be me who would get the gift of being her forever mommy!!! Joy!! What a perfect middle name for my tiny little bundle of joy! 
I'm so sorry that my update was not quick to come. Yesterday was an unpredictable day. Most of the time I had my phone and computer somewhere I wasn't. But here we are, a new day.
Yesterday I was fortunate to sit in during rounds again. Met with her doctor who told me they would let her rest before doing anything else and that he was not planning on doing a heart Cath until Wednesday. A few hours later we were told that Ivy was being prepared to clamp the ECMO and see if she could hold her own. It happened around noon, it was too soon, her body was NOT ready. So back on ECMO she went. Around 2 they took her for another Heart Cath. You know, the one they said they didn't want to do until Wednesday ha! So I guess she had rested enough and they changed their minds.... 
The doctor was just concerned as to why Ivy had such high pressures and he and Dr Pophal both had time so off they went with her. At 9pm, 9!!! They brought her back to her room!! We spoke to her doctors, they said they put a stint in her pulmonary valve in hopes of it relieving some of the pressures. It did help her lung. Remember, the pulmonary artery and aorta are on different sides now. They are used to doing different amounts of work. And her body has never seen this much blood pumping nor sats of 100 much less even 70! So while these problems she is having are scary and even to her doctors, unexpected, it is not unusual that her little body would be having some issues with all this new anatomy. We continue to pray that she just needs rest and time to adjust and heal. She is using much more support from the ECMO today. And she is very swollen. She has some blood draining from her nose and chest this morning and with that and the swelling I was a little overwhelmed as I sat and took it all in. 
Our nurses are amazing, her team is amazing, we could not be in better hands!!!! She always has at least 3 people looking over her! 
Her body is currently 38*. She was 34* when she came out of the OR last night and it took them until 5am just to get her to 38*. They were all jumping up and down when she finally reached that milestone! 
So our prayer request today is that they give Ivy today to rest. All day! And that these super high pressures can be relieved by the stint they put in yesterday and medication if needed, but that it would require no more surgery. That her body would be accepting of it's new design and that her blood pressure would go up.
Thank you Team Ivy for ALL your prayers!!!! Thank you Lee and Sarah (and soon Madeline) for the sweetest bear and balloon! Thank you Amy for my visit yesterday, it was just what I needed and such a sweet time! I loved seeing Grace too!!! Thank you for the calls and texts and emails and comments, all of these are the food for my mama heart during the day!! 
Love to everyone!!!!!!! Pin It

Pin It So much to say!!! I just don't know where to begin. Last night by the time Ivy got to her room, I was becoming too frail for a mommy. I felt my heart begin to droop a bit and I know I was telling myself to put on my big girl panties and accept that God's will for Ivy may not be as I had hoped. I pulled Bryan aside and reminded him that we would not stop giving God glory in this storm and no matter how the storm resulted, God would be glorified. We have been given more than we could have ever asked! We are in love with our daughter!!! She has taught us more than we could ever teach her! By the time my head hit the pillow at the Ronald McDonald House I was exhausted beyond measure. Mentally mostly. I had wanted to do a blog post to let you all know where we were but there was no wifi in our room and I was too tired to go downstairs on the public computer. Right before I hopped in bed I sent an email to my sweet friend Diana who had been with me by phone, texts and emails all day. I wanted her and a few other close friends know where we were at that point. When I woke up this morning I had an inbox full of precious, heartfelt, amazing comments from people who knew exactly what was going on? I was blessed by every one of them! And yet, how did they know? It was then that I got a much needed phone call from Diana. She said that Emme had waken in the middle of the night so after tending to her, she checked her email. When she saw my note she thought it was a blog post and she immediately posted it for me. When you all woke up, many of you were on your knees in the middle of the night, many fell asleep in prayer for Ivy and woke in prayer for Ivy, but you woke to a blog post that happened for a reason. Surely God knew I would need encouragement this morning. Surely He knew that you all needed specifics as you stormed the gates of heaven for our baby girl! Surely He knew!!! And I read them over and over and can I just tell you how Amazing you all are!!! How amazing that there are thousands of people joined by 1 God, stoking the gates of heaven, crying out to our Heavenly Father, on our knees, in our cars, in our beds, in our bible studies, in our churches, in our schools, in our offices, in coffee shops, in your own hospital room. Some of you I have met and most of you I have not, yet that doesn't matter. We all have the same intention, the same request, the same love for one tiny girl who has fought her whole life and will not be stopping that fight. Just look at her team!!! You and you and you and you and me!!! We are so blessed by TEAM IVY!!!! 
And to top it all off, I can pull up the news feed on Facebook and the whole entire feed is request after request from so many Facebook friends, To Pray For IVY!! God is so good, he has used all of you to minister to me, to walk alongside Ivy, to love on us from afar! 
Thank you!!
And now for an update on the Little Princess.
She is resting, she is not in pain and she is making the doctors and nurses happy!!!
She is being weaned off of ECMO, she did ok going down to 30% but they do not want to go any lower at this point because her little body needs to rest. She is ventilated.  She had an Echo this morning. They have given her more meds to paralyze her body due to lots of movement happening earlier.  She opens her eyes when she hears my voice and she squeezes my finger when I touch her. She loves her mommy :) Now that they have given her the new meds, she does not move at all. This is just temporary though, it only lasts a few hours.
They did not get a smaller valve, they used the 19mm one that they have had all along this entire month we have been waiting. He told us this morning that that big valve may be part of our pressure problem and she will just have to adjust to it. 
The pressure in her lungs is still very high. The pressure in one of her pulmonary arteries is very high and was pushing against her aortic valve. These things will be looked at through another heart catheterization which she will likely have tomorrow or Wednesday. 
A lot of info I know, but who knows who this might help some day down the road that is going through the same or similar thing. 
Finally,
I have gone round and round on whether or not to post pictures of Ivy right now, in her present state, as she recovers. I know that for me, if I were able to look at someones documentation of a surgery and battle like this and see the here and now, the before and after, I would find that so helpful. And I am taking photos because this is part of Ivy's story and I want her to see what a worrier she had to be to get that scar on her chest. But to post or not to post... That is the question. The technology is amazing, the work that all of these machines are doing... astounding!!! I think everyone would be amazed by it, and amazed by her!

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New Ivy Joy Update!!

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Ivy is on Ecmo. This is life support focusing on heart and lungs. It is pumping donor blood through her heart and it has an artificial lung. She is also on a ventilator so not breathing on her own. Her heart repair went perfect but it doesn't know how to function with this new anatomy. Her chest was left open due to the swelling. Her lungs had such high pressure that it almost ruptured her aortic valve when they backed up. They will decide tomorrow what to do next. Likely another heart cath to see what's going on with her lungs and another small valve. Her lung pressures are the big problem. She will be asleep as long as she is on ecmo and the ventilator. She looks very peaceful and we were able to kiss her and touch her as much as we want. With her on life support there will be no emergencies tonight so we are going to try and sleep a few hours. It was a looong day!!! We have an apartment at the Ronald McDonald house. We will head back to Ivys room at 5. If I can stay away that long. God was beside both Ivy and I all day! Opening emails from comments and email messages today full of encouragement was such a blessing. I always had encouragement and the verses were always perfect for that moment!

Trusting Him,
Mary

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More prayers

Pin It Ivy never made it out of the operating room, one minute we were told she was ready to be closed up and the next minute time just kept passing by. After 2 hours I could not stand it any more. I asked them to call and check on her. The nurse that had been waiting on her to come to her room came out to tell us that Ivy never made it out of the operating room. She is back on bypass. I ask once again for crys out to Jesus, that He would give her very tired surgeon every thing he needs to continue to do the best thing for our daughter. That he would breath life into our baby and strengthen her heart as it try's once again to work on it's own. We believe He's got this. We thank Him for every day of Ivy's life. But let me tell you,.. This is hard! Mary Pin It

Exploding with Joy and Thanksgiving!!

Pin It His will has been done, our prayers have been answered, Our God can do anything!!!
A smaller homograft did not come in, they used the 19mm and Dr. Nigro was able to make it work!
Ivy's heart has been repaired, we do not know if they ended up doing the Nikaidoh or the Rastelli, we have not seen her surgeon yet, they are closing her up now but she is OFF bypass and her baby heart is beating on its own!!!! This whole day has been amazing, the peace that has surrounded us has made the time go by quickly. We have been blessed with my sisters presence much of the day, she is a gift!! I will post details once we speak with the doctors and as time allows but I had to let you this great news. Ivy is amazing!!!! How thankful I am for this chance!!  Pin It

Update 2

Pin It She is doing well on bypass. They were able to get her 02s to 91 before they began, thanks to our awesome anesthesiologist and a breathing tube!! We continue to feel great peace. Thank you for specific prayers for that!!!

John 10:10b

                    Good bye plum color. We are ready for some pink!

                                       Ivy covered by her prayer shall!!

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Surgery update

Pin It We are in the waiting room now, the surgery has already begun and we could not be more at peace. Our pastor of mercy from our church is on his way to visit with us and my sister will be here a little later. We feel so blessed to have our child so covered in prayers from all across the globe. I woke up to 30 emails this morning and they continue to come in. I read every single comment you post and every email you send. Each one of them is just confirmation that we serve a mighty, powerful, loving God!! I can't even explain how much you all have blessed us!
The peace I feel right now is beyond anything I expected today. I know God's got this! I know Ivy is in the best of hands because the great physician is guiding the hands of her surgeon. Yes, I have fluttery things in my stomach and throat and yes, I can't stop picturing her in that operating room along with what it will be like when she comes out, but more than anything I just have faith that things will be just as God had planned all along and I again am grateful just to be here to walk through this with Ivy. 
I will continue to update as time allows. Diana has also gracefully offered to help me with that if needed. Thank you everyone for standing in the gaps for our tiny miracle. She was peaceful when we left her side this morning. 
"For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11
Thank you Chapel Hill Kindergarteners for the cards and pictures!! Please look for them in upcoming pictures, I plan on hanging every one of them on Ivy's hospital room wall!!! Joanna, Kaiya and Sammy you said your kiddos had pictures they wanted to send to the hospital. Ivy would love that! Here is the address 
Patient Ivy Sammons
Phoenix Children's Hospital
1919 East Thomas RoadPhoenix, AZ 85016 Pin It

Today is the day!

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We have waited so long for this day. Ivy has waited her whole life for this day. But today is the perfect day that God knew all along would be The Day! Ivy's Heart surgery will happen at 8am today.  My mom, sister, and Rylee and Lexi arrived yesterday morning and we had a absolutely wonderful day. Ivy spent her fussy time (3-bed time), the time she is usually just worn out and sick of feeling yucky, taking walks, eating dinner outside, playing in the backyard and giggling with her Auntie. She ended the evening with a big bowl of oatmeal and some crackers, her last solid food for a while. She was so exhausted when she went to bed that she did not even try to pick off the tape on her cannula! So very thankful for that!! I can sleep peacefully tonight knowing that she is just hours away from a new working heart! I realize the road ahead is going to be a rough one, but there is so much to be looking forward to!!! In the midst of riding this roller coaster , waiting on a donor homograft and watching this sweet little love bug get more and more purple, less and less energy, it has become so clear how steady God's presence is. Our weakness of spirit may cause us to ride waves of our emotions, but we can rest so much easier knowing there is always a steady hand on our shoulder. I'm thankful that sometimes feeling overwhelmed gives me a chance to see God more clearly and be reassured. He is faithful! The only one who will never let us down. 


I have come so that they may have life, and it in abundance. John 10:10





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Miracle of the moment

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Every day is another miracle, but today, today the miracles were to be made note of. Today I give thanks for the miracle of tomorrow.

You see I have been thanking God for every day with my new daughter. And while I have asked him for so many things throughout my lifetime, I have learned that God is in control and He always does what He knows to be best. And I give thanks to Him for that and try so hard to leave my worries at his feet. I really have focused my prayer life on giving thanks rather than asking. Because really, there is so much more to be thankful for than there is to ask for. And so today, after this very hard week, when my mind really pictured the doctors not letting Ivy come home today due to her ridiculous o2s's, not eating much of anything for several days and the problem we have been having with her keeping her cannula in. Her last 2 days  before this big surgery, spent in the hospital hooked to IV and wires, the thought of this absolutely broke my heart.

She woke up this morning with very swollen eyes, she would not eat anything. I got her ready, and Bryan took her in early for her appointment. He did not even put the oxygen on her for the ride to the hospital because as soon as she is in that carseat she will peel that thing right off!! 

She munched on goldfish and cereal and water on the way there. She was wonderful for her 4 vials of blood being taken, her chest x-ray, her nose swab, her EKG! HER OXYGEN SATURATION WAS 52 OFF OXYGEN!! Did you hear that???? This child can no longer get above 50 with oxygen and she was 52 without?? (I realize this is scary low but this is Ivy we are talking about..) She finished up, they sent home new tape for her cannula in hopes that it will be too hard for her to pick off, a new cannula that might be more comfortable although a bit bulkier, and that's it! On the way home she ate more cereal and goldfish! Tonight we went for a long bike ride and watched the sun set. It was absolutely beautiful. Almost as beautiful as the little miracle in my bike seat!!! Chatting all the way! Oh I wish you could hear her! Anytime someone walked or jogged near us she would shout Hi ! and wave! She sang songs made up of all her new words, RyRy bye bye Wow iwuyou out up fower tree dog what (she says what because she says mama over and over and i say what over and over :), more people pass us, more shouts of Hi !! Don't anyone think of passing us without saying Hi, Ivy will say Hi to you until you say Hi back! Then she politely waves her cutest side to side wave and says Bye Bye! She went to bed tonight with her new cannula still in, new tape still on tight! Her tummy was full. My sweet baby girl ate a whole bowl of oatmeal and a whole yogurt and a little spinach. 

Thank you God for today and tomorrow and forever! Thank you for Ivy, for her life. For whatever life you choose for her. She is Your Miracle. I'm just so lucky to be her mom!

FYI~ almost forgot, there was no talk of a new valve (smaller size) donated. We did not see the doctor that would have discussed this with us today so there is still a chance that they have one. We just don't know yet. Honestly though, God can use anything!! Like my little Lexi tells me many times every day, It's Just Ok Mommy! Yep, God's Got it! It's Just Ok!

Pictures just for fun!!

 First Princess Birthday Party for both girls! Thank you Claire and Chase for the fun time!!!

                             Looking for chocolate! None here

                                       Watching sister bounce.

                   Hello Pup! You look beautiful!

Once orphans, 
now daughters, sisters, granddaughters, nieces, cousins, friends! My heart swells for these girls! I can not imagine not having been called, not having answered, not having them! 

               Forever Sisters!!!! Forever Loved!!

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Ivy ~ Just 3 more days baby!

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Many of you emailed me asking if no news was good news? Actually, no news was just this mama running herself ragged to keep the house afloat! But we made it. Today is Pre Op day! 

It has been a very tough week. Ivy has declined greatly since my last post and is really just not doing much but sitting these days. Whole lot of holding going on!!! She is not eating much now, does not sleep during the day and coughs a great deal to get more air in her lungs. She is fighting the cannula drastically now, pulling it out all through the day and night. She will sit there and pick the tapes off one by one if you are not constantly holding on to her hands and that makes for a very unhappy little girl.

We have had a few very short outings and she is very happy when she is out and about. She loves to go places, loves her carseat and loves strollers, wagons and the bike seat! We are going to have a great time when her heart is well! 

So today she will go to Phoenix Children's for her Pr Op appointment. They will do new blood draws, new chest X-ray and new EKG. After that the doctor will let us know if a smaller homograft has come in and let us know if we are ok to go home until Monday. 

Today Lexi and Rylee are headed to N. Ca for my cousins wedding. Lexi was asked to be the flower girl and we didn't think we would be able to follow through due to the timing of our China trip and Ivy's surgery. At the last minute we decided to send Rylee and Lexi to the wedding so they will leave today and return early Sunday. They are So excited!!! Lexi is calling it her special Sisters Trip and she keeps saying let's go right now!!! Im so proud of this sweet girl!!! 

Ivy will be finished with her testing by 2:30 today so I will update with any new details this evening. Thank you again for all your prayers! Thank you Sweet Matthews for the yummy dinner last week!!! Thank you Jones family for the best Chicken Barley soup EVER!!! Thank you Aunt Sherry and Uncle Wayne for the Cape Pies!!!

Thank you Di and Jill for the bunnies and flowers!!! Thank you Emily for the Ivy Loves To Give book!!! Thank you Robin for the pillows for the girls! Thank you Diana for the leggies and hair pretties!!! Cant wait till she is well enough to sport them in the hospital!! Thank you everyone for your love, for your prayers, for your texts and emails and phone calls!!!!! Thank you!

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Lucky Mama

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10 Days!

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This morning we met with Ivy's surgeon. Word when we arrived was that there was a Homograft!! We were overjoyed. But, turns out the nurses were so taken aback by Ivy's color and numbers that they were jumping to conclusions before the doctor made any decisions. Ivy was less than thrilled to see the nurses that are so darn sweet with her and always come running to visit with the little miracle girl. She would point to them and grunt as if to say get out of here! She clung to me as we waited for Doctor Nigro to make his entrance. Finally he did and he spent lots of time with us, sharing how he felt about the current situation. They have a homograft, it is being reserved for Ivy, BUT it is too big. The ideal size for our peanut is 16mm. A 12-18mm homograft would suffice. 19mm would require some tailoring that could lead to leaks and other complications. But if its all he has... ? So Ivy's saturation was 52 on 2liters of oxygen and stayed at 52 when they dropped her to 1liter. They all agreed that she is going down hill but she is not at the bottom of the hill because she is very alert, very busy even if just able to be busy in one spot because she is too out of breath to be mobile, she is eating... and eating and eating, and she is not sleeping a ton. (We all know this is because the child is so covered in prayer and God has heard and answered every one of them!) So they made a plan and the plan is ~ 10 ~ DAYS ~. In 10 days, on March 26th Ivy will undergo open heart surgery to correct all the defects of her little heart. If a homograft in the range of 12-18mm comes available before this day, then they will use that one. If one does not come available, then they will use the 19mm one that is reserved and just do their best to tailor it for Ivy. If the smaller one we are hoping for comes in within the next few days then they will change her surgery date to an earlier time. The 10 day window is what they feel the maximum time Ivy's body can continue to wait without doing more damage than good. Ivy is asleep right now. She continues to cough often and she is very very fussy!!! I could add a few more very's but I will leave it at 2. She is frustrated, she wants to go go go, do do do but her little body wont let her. This makes her very grumpy! She weighed in at exactly 18 pounds today fully dressed so if she had 1 pound of clothes on (pretty likely) then she is 17 pounds at 22 months. I can see it in her face. She was fuller in the face at 2 weeks together. She is getting a little longer and should be gaining weight. She is so very thin! I need to measure her legs, they are the shortest little legs I have ever seen. Her torso however is really long, at least in proportion to those baby legs! Oops, I got off the subject.... 

Now we will continue to pray that Ivy grows, Is out of pain, and hangs on for 10 More Days!! 

 The Lord is my light and my salvation -- whom shall I fear? The Lord is the stronghold of my life -- of whom shall I be afraid? Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident. One thing I ask of the Lord, this is what I seek: that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to seek him in his temple. For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock. (Psalm 27:1,3-5)

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It's Hard!

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Today we sit knowing nothing more than we did 1 week ago when we found out about Ivy's surprise pulmonary valve. We are 1 week in to the wait, we are 1 week in to some precious time at home with all 6 of our kids, we are both happy and sad.

It is hard to wait, that part I know for sure. It is hard to say, I fully believe in your perfect timing God, when you see things the way I do. It's hard to stop dwelling on the fact that my oldest daughter is here to help with the family until the 20th and its already the 14th and we are still waiting. It's so hard. Its hard to believe that Spring break, no school, no dance, no shuffling schedules, is happening right now as we speak and the timing in my eyes would have been oh so perfect, but it's not the right time. Most of all, it's just so hard to see Ivy's numbers dropping before my very eyes and how purple her little hands and feet are and know that God has a better day planned for this.  Yet even so, I know. I know He does. I know He's got this. It is what gets me through every day. I know He has the perfect day and the perfect plan. Yes, my heart stops every time the phone rings, yes I get up in the night several times to check on Ivy, yes I'm frustrated that my sweet baby is now getting nosebleeds from the constant oxygen. But all in all, without a doubt, I do know that this time we have had, this week at home with all 6 kids (my 21 yr old visiting for 10 days) has been a gift! It is like Christmas every day. With lots of voices and so much laughter, meals together, late night movies and kids all over the place wrapped in blankets till all hours, swimming and all of us playing games with each other on our iPhones! It makes my heart swell! Having Quincie home has been such a blessing. She is a HUGE help with the girls, and oh my goodness, Lexi still shrieks  with delight when she sees every morning that Quincie is still here!!! 

What a blessing for Ivy to be able to feel the love of the whole family, all together, enjoining every moment! Ivy LOVES when we are all together!! Yesterday we ventured off to see a movie! Yep, the kids thought I was crazy but I needed to get out!!! So the kids and I took the girls to see The Lorax. 

Guess who sat through the entire movie??? We figured Lexi would, but Ivy surprised us and sat through the whole thing. I think she ate half a Large popcorn by herself too!! She was shoving that popcorn in her mouth the entire movie. She was perfect! Lexi actually fell asleep 3/4 through the movie as it was nap time. Speaking of naps, Ivy has not really been sleeping much during the day. She is up by 8 or 9 and fights her nap now. It's odd but true. She loves the car and is always asking to go bye bye. She loves to eat and can often be found in the walk in pantry just grazing on whatever she can reach. Her favorite is veggie straws! She can't get enough of those. Not the greatest snack but sure better than the Chinese numb and spicy hot pot flavor pringles she came to us loving :)

So, due to Ivy's low oxygen saturation level, the surgeon wants to meet with us this Friday. We do know that there is still no valve for Ivy's heart. We have also been told that if Ivy's numbers are as low as they have been this week, 40's and 50's then they will need to admit her and make a new plan. A tissue valve or whatever they do outside of a homograft would just be a quick fix for now, she would need to have it replaced while she is still very young. It would allow them to fix everything else though. Tonight she was coughing a lot and breathing really hard. It started after her short nap. She was fussy and it was obvious she was feeling really yucky. She amazes me, all of us really, how she is operating like this is just amazing! 

So with all my fears and worries and heartbreak laying at the foot of the cross, I thank you once again for your fervent prayers, for sharing Ivy's story so that even more can pray and for allowing me to share our journey.

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still. (Exodus 14:13a,14)

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Love

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  And now these three remain: faith, hope and love. But the greatest of these is love. 1 Cor:13


We are doing good. Ivy is filled with joy, more and more each day! She loves her sister Lexi so much and is doing so much better with sharing mama. She is not responding so well to her oxygen now and she has developed a cough. I hope to hear something from the doctors tomorrow. We have so much hope for this little angel to be healed. So much Hope!!
Updated~
By bed time last night, 

I was back to 100%, I had the flu the day before. Thank you Jesus!!! Now we pray that Ivy does NOT get it!!

Ivys oxygen saturation was in the low 50's, still too low for me but the doctor assured me he expected this and that is why we need this surgery fast. She will continue to go down each week. Scares me :(

Her cough was so much better in comparison to the day before

Her nose had NO MORE discharge!

I'm telling you, this baby is SO covered in prayer from the very young to the very mature :), and large groups of people have gathered in prayer to pray specifically for her Sunday, Monday, and today! The little kindergarteners in MN, praying for her daily, my adoption family, immediate family and friends! God HAS protected her!! He HAS made her resilient. He reminds me every morning when I see her smiling face peek at me from her crib as I come in the door, I will never forsake you. He loves Ivy so much!!! 

I can not tell you what a blast it is to have Ivy Joy as a daughter. She is the perfect fit. And she has found her place! She is so comfortable. And yesterday after a doctor ordered 1/2 day without the cannula, (to see what her sats did without it, no change for several hours is the result), Ivy decided she doesn't need to sleep anymore, there is just way too much to explore! How wonderful life is when there is no tube attached to you! How quickly she can go from destroying one room to the next room without that cord! Mommy discovered how much cleaner things stay with the cord. But I have never been so happy to see a child get into things and explore! She cried for a very, very long time when the cannula went back in!

 She also had her first swim in the hot tub last night! It was, I think, what heaven will be like for Ivy. Only maybe with chocolate bowls lining the sides of it! She was ear to ear smiles and shrieking with delight the entire time. She shared with us for at least 15 minutes, her disappointment in us for taking her out and getting her ready for bed. I have no doubt this will be one very tan little girl, living in the pool this summer!!!! 

I delight in the thought of that! 

Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven.
For where two or three are gathered together in my name, there am I in the midst of them. Matt 18:19-20 Pin It

Waiting at home

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Ivy is home! She was discharged and we are home with a VERY happy, VERY content little sweetie! She remains in critical need of heart surgery, labeled in heart failure, waiting for a Homograft, a donated human pulmonary valve of a toddler. 

Ivy's pulmonary valve is only 1/8th the size of what is should be. Because of her age, her size, her very special heart, the pulmonary valve HAS to be from a human and has to have some tissue from the part of the heart it is attached to still connected to it. So with our needs being so specific, they have not been able to find a match. They have contacted all of the operating rooms and they are hopeful that one will come available in time but right now, without an actual valve being prepared for her, without a valve anywhere in sight, we really didn't have a need to remain in the hospital. We are so very happy to be able to have Ivy at home. She is free of all of those cords and beeping monitors and nurses in and out. The nurses were so very sweet with her and so helpful with everything but the poor gals were so overwhelmed with concern for her as they are not used to running to a beeping monitor showing oxygen saturation at 32 and finding a tiny girl sitting on my lap wolfing down a second cup of chocolate pudding, a pediasure in her hand (empty), kicking her feet and clapping while mommy sings BINGO! She is quite the talk on the 5th floor at PCH. Everyone comes in to listen to her VSD, I guess one this size isn't observed often. 

So what's the plan?  I wish I had better news but the truth is Ivy needs this surgery very soon and we can not do it without this valve. Here I thought it would be complicated enough with just the intense surgery she has been waiting on and now we are faced with the reality that it can't happen yet. We have our girl, we have an amazing team ready to go, we have the help set up and we have no valve. Stinks! But it is just yet another great reminder that we are not in control here and we do not need to be! It will come and surgery will happen and timing will be what it was planned to be all along. We just need to enjoy every day, every minute, because that minimum 2 week hospital stay is going to be.... long! Hard! Draining! And Not Fun At All!

We continue to trust that Ivy is going to be healed soon! We covet your prayers. We delight in every email, every comment, every text and every phone call! We feel your love!

 Swollen eyes and sore leg but such a little trooper. 

 A box of wipes is the best cheap toy. Pull them all out, blow your nose, stuff them all back in, start over!

Blowing kisses to mommy

Always has the energy for a little attitude!

The cath causes a little swelling in the leg. Makes her look like she's finally got a little baby chubs going on there :)

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