Flu update

Pin It Just a quick post to update. Ivy is up and awake this morning. She had her 8am breathing treatment and pulmacort and she seems comfortable here with us watching her favorite movie Tangled. She is being very cute and funny this morning, very much wanting to be close to her sister but still not wanting to play or get up. 

I took her to the pediatrician again yesterday for a full check up and we go again on Friday. I know I am being a bit aggressive with my concerns but we have traveled the unknown road with her far too many times and most of the time everyone thinks things are fine and then suddenly they are not. I see little things that appear normal to someone who doesn't see her every day and really know her so don't think Im crazy, I'm just making sure I cover all of my bases because that is my promise as her mama.

As much as I want this to be just the flu and on its way out.. and boy will I be thrilled when its on its way out.... I'm still on guard and my antennas are not resting. I will be the first one to jump for joy when someone say, told you so, just the flu!

So yesterdays appointment. Despite round the clock breathing treatments, her O2 was 88. This is low for Ivy Joy. She was in the 80's when we took her to the pediatrician when this first started and around 89-90 when we were discharged from our ER visit at the hospital. So really, no improvement. She sounded very junky and very tight, all the same as our previous checks.

We see the Pulmonologist on Monday. Im sure if she is still looking like she does today, we will get some answers. She still answers, not good, when I ask her how she is feeling. But when the pediatrician asked her, she replied, I'm great!!!  She is so stinking sweet! When I told her we were going back to the doctors yesterday she said, no! I take my medicine! I take my breathing treatments with no crying!! I drink my water!! It broke my heart in tiny pieces! She was so scared she would be going back in the hospital.

I was looking back at some old posts this morning. I should never have done that!! We look forward, not back. The past is over. I know I know. But I looked back at January 6th, 2013. You can find it if you go back in the archives to that date.

I think as a mom of a kiddo like Ivy, my feelers will always be out and while I attempt each morning to cast my fears unto Him and lay my worries at His feet... As a human, as a mommy, as her mommy, It is not entirely possible for me to let it all go. I am certain God made me this way knowing all along who would be my daughter. I can not get out of my head.... Cough could be caused by blood backing up. But I have a cough, Bryan has a cough... I need to let it go. My girls sing Let It Go from frozen all day long. Well Ivy used to before she got sick.

I'll be back her Friday. Prayerfully with some very good news about this Flu...

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A little love

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Today, Ivy has decided to rest. She was up for 10 hours straight after being extubated yesterday. Not because she was wired and feeling energetic, but because she did not want to miss a thing. If something else was going to happen to her.. she was not about to sleep through it again! So around 11pm she closed her eyes for the first time all day. But she made sure to wake up every 30 minutes or so. She'd ask her amazing nurse Lesley what she was doing. Why she was doing that. She used her little potty (this girl amazes us how even in her current condition, she uses her potty even in the middle of the night) she drank lots of her beloved water and she was content. This morning she is resting up! She slept until about 1pm, woke up to go potty and is now trying to have some soft food. She really isn't interested in food yet. Such an odd thought for our little muncher! Her last drain on her head was removed this morning. She will get her Arterial line out later today and possibly the NG tube they were using for meds. By tomorrow we should be moving over to the non intensive care cardiac floor. 
We spoke with neurologists in more depth today. Probably because they can see now that she is acting 100% normal. We were told that the extremty of her bleed was very impressive and that the brain was so tight that they could bounce a quarter off of it before releasing the blood. Not good!!! So once again we praise God for getting Ivy through in miraculous ways! Today her right eye is swollen shut, and her right side of face and head are very puffy. Normal, but doesn't look too comfortable. She shines like a super star regardless. She keeps asking me why all the other babies are crying. I tell her because its not much fun here. The nurse tells her because they just aren't Ivy Joy. Whatever the case, I pray for all the friends as she calls them, sharing this pod with us and that all of them are home in their own beds soon! Pin It

Change is good

Pin It Life is so much different this week! Ivy Joy is 100% mobile for the first time in her life! She just walks all over the house, gets her snacks, climbs in her big girl chair (will have nothing to do with the highchair now), climbs in the learning tower, walks to her potty and goes pee pee, goes swimming with us and doesn't scream the entire time, will wear her water wings and swim from step to step in our hot tub (even though it is 100+ every day, Ivy and I are wimps and like our pool water to be heated!! We aren't heating the big pool, the big kids would not be happy about that, but the hot tub is big enough to swim in and is heated up for us wimpy ones who like the water to feel like a bath!). She doesn't ask to go bye bye a million times a day or to eat every 2 seconds because she is just having fun playing and being a little girl! Lexi is so proud of her and tells her so, constantly. 
These little girls... I tell you.... ARE SO SWEET!!!
Me..... well, I'm a little taken aback! I want to put bubble wrap on her head... and pillows all over the tables, cabinets  and doors. She scares me to death! When you are a tiny tot on blood thinner,  just the tiniest bump leaves you with a shiner and a trip to the ER. I want to let her go, and I am, but I will be found 2 inches behind her, running, ready to break any falls!!! We have waited SO long to get to this point! It is so exciting! Just would be lots more fun if she did not have to be on anti coagulants!  Regardless, We are having the time of our lives just being a regular family! Doing regular things!! Even have some trips planned! We can't take Ivy to pre school, sunday school, gymboree, public pools, any group indoor play classes. BUT...... We can travel, we can swim at home, and best of all..... SHE CAN WALK!!!!! 

Our Real Life Super Hero!

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Next steps

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 For those of you who are not on Facebook or do not already know this
Ivy was admitted in to the hospital on Thursday after I suspected something more was going on with her heart.
After an echo revealed diminishing right and left ventricular function and hardly any squeeze at all coming from her heart, we headed to our room that awaited us at our local Children's Hospital. 
The heart shows all of her repairs are working as they should be. So why the sudden drop in our sweet baby's heart function? The suspicion is her Right Coronary Artery that has been hindering us since April of last year... And the secondary pulmonary hypertension that is a direct result of the issue that occurred with the right coronary artery and the time spent not knowing it was stitched closed. We need to do a heart cath to verify these suspicions. But we need her heart stronger for a heart cath. 
So Ivy is on Milrione and IV diuretics, being closely monitored, waiting for a day next week when she will get this heart Cath.
Our next step is sad but obvious. The only way to get a new coronary artery, is to get a new heart.
We are choosing to take a little blog break at this time. We have so much to pray, think, and learn about. We have very important life changing decisions to make as far as where this will happen and how we will go about it. Obviously there will be a lot of factors out of our control since we don't even know when or if this gift of life will be given to her. 
We believe with all of our hearts that this is still Gods perfect plan and we will get through it whatever that plan is. God has blessed Ivy with the strength and bravery of a Lion and the gentle soul of a lamb. She is like no other child I have ever met in so many ways. She has been through more than any one should ever have to. And yet here she sits beside me, heart barely squeezing, with round cheeks and a belly full of mashed potatoes, broccoli and assorted nuts, a box of fries in one hand and her blankie in the other, telling Swiper, No Swiping, as she watches Dora. She says please and thank you to everyone coming in and out of her room and shares her snacks with whoever asks nicely. She tells her visitors she loves them right back when they leave and she tells me thank you for the simplest things like fixing her pillow, changing her diaper, throwing away her trash. She scolds me for turning the lights off and shutting her door but says, It's ok mommy, It was just an accident I forgive you, when I spilled water all over this morning. She has a fight in her that no one can stop and when God says it is her time to come home, His will be done, until then, she continues to run her race and we continue to try our best to keep up with her and stand by her side. She is much stronger than us! Much braver than us! And much wiser than us! 
We thank you for your prayers and support during this time. We appreciate your comments of encouragement and read every single one. We are still holding on to the hope that she will spend her birthday at home (just as we were praying last year here in this same hospital..) with her family and friends and all who love her! 
You can find Ivy's Facebook page by searching Mission to a Million on Facebook. We may do small updates there as we see the need to update. 
Ivy's Birthday is May 6th, her little party is planned for May 4th. We are praying that she can celebrate her 3rd year and the gift of her life at HOME! We are praying that there is a perfect heart out there that God has intended to use for two children instead of one. To Him be the Glory, for He loves her So!

                                          

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Discharge Echo

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Before you can even start the process of moving towards a discharge day, you have to pass that DISCHARGE ECHO......
the one that brought me to tears and on my knees in despiration last trip.
The one that left Ivy being whisked to the OR for her 4th Mitral Valve surgery in November.
I feel almost too giddy and excited about the progress Ivy is making, the speed of her recovery, the way she is eating, the fact that she pushed a toy around the ENTIRE 41 bed unit yesterday, legs shaking with exhaustion in the end but when she got to her door she said, AGAIN and then plopped to sitting position exhausted!! How her cardiologists stops by her room and then pops back in just to peek again because he just can't beleive how good she really does look! How her nurses from ICU just can't believe the little girl they are looking at is the same one who came here with a good 5 pounds of excess fluid in her body and the same child that came out of her 5th open heart surgery in 10 months looking so lifeless.
And yet I am shaking with anxiety at the same time because I've done this before. I beleive that Ivy is doing as well as Ivy could possibly do. Left side really looking good. Right side suffering from the right coronary artery issue. We need todays echo to say that the RCA is as good as it can get in its tattered condition. That its hanging on and it is not going to stop her from coming home and living life. That is todays prayer. That the healing hands of our mighty God who made Ivy for all His glory and has brought her from near death so many times, will keep that right side well enough. Well enough to play. Well enough to be smothered with love and affection. Well enough to go to the park and swing on the swings and just be a little girl!! Well enough to learn all about Him and well enough to share her story and bring HOPE to anyone who feels they have none! That is my prayer!

Matthew 19:26
Jesus looked at them and said,
"With man this is impossible, but with God all things are possible." Pin It

THIS IS IT

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There are so many pieces to the puzzle that makes up Ivy Joy's life. The daddy who said, what are we waiting for, she needs to get home. The mommy that fought the fight of her life from the second we said yes, and right until this very day and forever. The sisters and brother who gave things up, sacrificed, prayed, and loved this little girl more than life every single second. The grandma and Aunty who are different people now, more thankful, more aware, and ultimately, changed because of the head over heels love they were overcome with when they met this little girl. The friends of my own kids friends, who have been touched, changed, overwhelmed, by the life and value of this once very sick baby girl. The friend who I never met, praying with me at the wee hours of the night on the phone before we ever left for China. The friends, old and new who stepped in, offering anything they could come up with to make our decision to head to Boston, that much easier. The prayer warriors all around the world dedicating prayer after prayer after prayer to Ivy Joy while hearing God speak in thier own lives and finding new hope and stronger faith, all because God, and His works and this little girl. New families created because when we said yes, they found the faith to say yes too.  A dear friend of mine who insisted on praying for Friday discharge even though the doctors said we would be discharged by Monday and then stay in Boston a few more days. Even though we knew Friday was not an option, she continued to pray big because with God, all things are possible. She never gave up hope. All the people from family and home to China and France and all around the world, hearing over and over that we were on the road to recovery and over and over again, that we were not doing well and needed prayer yet again, they never gave up, they never lost hope, they never said it's over, and God stepped in, again! A dear friend from home who made so much of our travel arrangements for us and is here with me now, just waiting on Ivy and I hand and foot with the heart of a servant all because he fell in love with this little girl and was blown away and forever changed by the act of God and His ultimate plan for this ~once an orphan, labeled terminal, little girl~. A dear friend that I only met a week ago, who happened, not by accident, to be right here with me the moment I found out Ivy would need a 3rd open heart surgery. She became family that day as we cried together just picturing my tiny girls chest being opened once again and all the fighting, the pain, the suffering she would have to endure once again , and when the time comes, this beautiful friend of mine is having Ivy and I flown home in a private jet so that this little girl can have as little travel time as possible and be back with her family where she will blossom. The cardiologist who has built me up time and time again, always full of kind words about my heart, my soul, my parenting, my advocating, my nursing lol, my love, for this little girl. The surgeon, oh this surgeon, he is so much more than that. I cry as I type this knowing that he is the silver piece in this puzzle... God being the golden one. He looks at Ivy with these eyes that have so much compassion and he spends so much time with us, checking in on her often several times a day. But last night when he came in, still dressed in his O.R gear, it was dark in the room and Ivy was just falling asleep. He held her hand and stroked her wrist. And he told me a story. A story of a little girl who was born 13 years ago with a very complicated heart defect. And how her surgeon cut a hole in her aorta by accident as well as several other mistakes. This 13 year old girl is his daughter. His baby! She was on ECMO, she was in heart failure and at 6 months needed a heart transplant. She then went on to needing a kidney transplant by the time she was 2. His daughter. He looked at me with the kindest face and told me that he spent Thanksgiving and Christmas in the hospital, right here in my shoes! He was in med school when his little girl was born, and I am sure that his little girl is why he is a heart surgeon and why he has such a passion to bring Ivy home healed as best as her little heart can be. I did not know any of this before last night. But God did. God knew who Ivy needed and He brought me here. There are so many more pieces to this puzzle. Children all over praying and sharing Ivy's story. Having lemonade stands and praying those Huge, rock solid, big prayers with an unshakable faith in their fathers ability to do more than we could ever fathom! Nurses who have loved Ivy from head to toe every single day. Our DR family who has supported us from day one with love and prayers.  Our Ladybug family, praying fervently! Our Napa family and Vacaville family, that loves us so much and never gave up hope! My dear friend Jill who traveled to China with me and precious Maggie who is the kindest woman I know. The people who now know Christ, or have come back to Him, all because of His works through Ivy Joy. My China Heart mom family, I love you all! My church family. My precious nieces who have sent me text after text just to love on me and support me. Keith and Brandy, our dear friends in AZ who loves us so big! Nat, Chris, Laurie, Tina you are such vessels in all of this! I love you. Jane, Holly, Luciana, Paige, Annette and Alex, Melanie Mannos and family, Jilie Wingert, Kathie Hikade and lovely Sierra, Carmen Piper, Jennifer and Kim, Amy Roy, Ben and Amy, Stephanie Chu-ba, Karen McCarthy, Wendy, Beth Cario, Barb Whalen, Mary Ellen Meyer, Tonia Davis Evans, Sherri Zimmrman, Lyn Thomas, Elizabeth Rozman, Karen and Lily, Kendall, Todd, Avery and Chloe, Sharon, Sharyn and LiLi, Kelley and family, Gretchen Downey, Glenda, Penny, Susan Sims, Jo, Jen and Christian, Yvette, Georgia Grace Family, 
Thank you for your kind emails and constant prayers!! So many pieces! Too many to go on right now, but all, equally important, valued and loved! Amy Timberlake, I love so much and have loved every phone call and message! Sarah and Lee, Thank you for taking the leap too! I love you guys and cant wait for our babies to meet! I could go on forever, but I have a room to pack.
What you say???
Thats right! My buddy Diana, in Minnesota never put our mighty God in a box, she prayed big and she prayed out loud! And we are being discharged on FRIDAY!!!!!!!
Ivy is cleared to go!!!! HE Echo was great! She is eating like a football player. She is happy as can be, laughing and playing and talking and, well, eating some more! Not chocolate and chips either! Real food. Large amounts of regular, real food. Baby girl has energy to finally eat a full meal! And she is loving it! We are not at a perfect INR but her cardiologist is confident that she will be ok enough to get out of here by Friday. And they are so confident that mommy has no problem with her care that they do not even need to see us for a follow up here in Boston. We will see our new cardiologist, shortly after getting home. He is the new~ Head of Cardiology for Phoenix. He comes from CHOP! Praise the Lord. Another piece of the puzzle. We see him Tuesday. My friend Kim will be here Friday to escort us home on Saturday morning!! We will arrive at Williams Airport on Saturday around 1:30pm. I still can't believe it. I have said This Is It, over a dozen times in regards to my sweet girls healing. and here we are, finally, in God's timing..
THIS IS IT! Pin It

Another week begins

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Lots going on here in Boston!

An improved xray was the good news this afternoon!

More visitors, thank you Maggie and Kim M for your visits this weekend and your patience in allowing Ivy to decide when it was ok to get near her and interact with her. I loved watching her finally be able to have control over something. And I love how you both earned her trust by the end of the visit. It was a treat to be able to share this amazing sweet girl with the both of you. I look forward to a day when we can do it under much better circumstances.

 Pointing to the door when the unfamiliar surgical nurse came in to say hello. She did not recognize her so she said get out!

 Making a turkey with the volunteers, just like the big kids!

 Looking at pictures of our sweet friend Kim's little girl Annie.

 Modeling the adorable bunny coat that Miss Kim gave her!

 The nurse walked in as I was getting my camera out so all I got were these little pouty faces. She is such a hunny either way. But man am I ever excited to see my little flower blossom back at home. No one to be afraid of, nothing to scare her! 

Hilda, you know who I'm talking to.. Shame on you!! Please find a new hobby that does not involve my daughter or my blog. Perhaps pottery would be a good fit? I actually know an amazing Potter. Perhaps I could introduce you to Him! 
I have deleted your nasty comment and will continue to do so, so please go away. 

 The greasy hands and face are courtesy of her obsession with bacitracin! We use it on her nose as the rip from the ventilator is healing but she likes to take it and rub it all over her! And that is A ok with me!

Tomorrow is a big day. It will shape how much longer we will be here. And let me tell you...... we are really antsy to NOT be here any longer! Today is day 30 in Boston!
So we have the feeding team coming in the morning to watch her eat breakfast and drink. Then the feeding tube comes out. Next is a swallow test. Then an echo cardiogram. We specifically pray that the aspiration be gone. That the mitral valve is still doing well. That Ivy eats and drinks more with the feeding tube out. That we get the go ahead to be on a plane by Friday!!! Pin It

Ask, and you shall receive!

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Anything you ask for in prayer!

 As you can see, she has lost quite a few accessories in one short morning! What a day it has been!!!
I walked in to her room as usual this morning, but later than normal. I overslept and did not get to her room until 8am.
I did what I always do. Dropped my bag off. Washed my hands. Turned on the lights. Walked to the bed and kissed her head, held her hands and said good morning tiny miracle!
And she opened her eyes!! She looked at me for a few seconds, then around the room, then back at me. I began to talk to her. She shook her head NO to everything I said. You've been such a sleepy girl. NO
You are my brave little hero. NO
I love you so much and I missed you so much. NO
Laughing, crying, just overjoyed, I squeezed my tiny little miracle as long as I could and called the nurse.
Things began to move quickly. Ivy pulled off the Bi Pap mask. She was very graceful about it. It was big, annoying and oh so unsightly, so she just carefully removed it. Standing in awe as the doctors and other nurses came around to see Sleeping beauty had come back to us, her oxygen saturation only dropped to the high 80's, low 90's. So Respiratory came and skipped right passed the High Flow one would normally step down to, and went right to regular oxygen. They started her at 2 liters and then wanted to see just how amazing she was, dropped it to 1 liter and she remained at 99-100% saturation! Cheers began and cheers continue!!!
Next she had some lines removed. She had not needed them for a while but since no one really understood why she still was not waking up, they left them in, just in case. Out they came!!
She asked for water so we tried some. She drank way too much way too fast and choked a little. She asked for more so we took it slower. I asked her if she wanted to eat and she nodded NO.
She had a bath and got fresh clothes and even went for a ride in the go cart. She was not impressed with her walk, or all the people saying hello or even her mommy to be honest. She is not happy about all the junk on her arms and face and she is still in quite a fog. She knows what is going on basically, but she seems very dizzy still and very very tired obviously. We had a good amount of awake time, took a nap and then mommy got hold her baby girl!!

She had been rejecting me all day (totally a normal thing) and nodding NO when asked if she wanted me to hold her. But suddenly she decided to forgive me for all of this and she gave me some holding time. 

We ordered her some mac n cheese upon her request and she ate a great amount of it. She usually takes forever to chew and eat but today she just gobbled it up! She has a working heart now!! Lot's of things will come easier to her now!

 Her little body is so tiny and her legs have hanging skin from all the lack of muscle and fat. I have no doubt that will be a thing of the past in no time!~

The fluffy socks were requested by the nurses who always stop in her room to see her. We were happy to oblige!

 This picture gives you an idea of just what a bitty thing she is. My hand size in gloves is small... He feet are just adorable! Sorry for all the pictures but remember this is my documentation of the life of the girls and all that Ivy has been through and overcome. I think she should see this some day :)

It was a very busy morning so mommy put the do not disturb sign on the door and closed it! Leave this baby alone!

Thank you Team Ivy for asking!!! We indeed have received!!

Thank you Father in heaven for this family I am so unworthy of.  Thank you for carrying me through every day of this beautiful journey! Amen Pin It

Prayer Request!

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Hi Everyone!

Mary has reached out to ask you all to pray for Ivy's lungs! Her left lung collapsed last night, and they have been giving her treatments every 2 hours to clear it.. As you can imagine these are not any fun for this sweet baby girl! She is tolerating them and coughing up gunk which is great news! BUT, until her lungs are working 100% she can't have anything to drink.. And poor Ivy Joy is soooooo thirsty! I can only imagine how hard it is to deny your baby, who has been through so much, a drink! Also, there is the risk of her being put back on the "vent" if her lungs are not working as they should. So please join me in prayer for God to breathe into Miss Ivy Joy's lungs again! We know He CAN!!!!!!!!

Thank you for standing in the gap! It is such a gift you are giving to this little miracle!!!

Blessings,

Diana

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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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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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It's Almost Time

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Today (really yesterday since this didn't post last night due someone waking up while I was typing it) was Ivy's Chest Xray, Her blood work, and her second Echo Cardiogram. She was so good at the hospital, really brave this time and forgiving to mama giving me kisses all the way out of the blood lab!
It was a long afternoon!
Lexi stayed home this time, the Bigs were all in school when we left so we had her new favorite babysitter (Thank you Miss Jenna) come over to watch her and lets just say she was in heaven!!!! Jenna will certainly be top on our list for sisters from here on!!! And she's a dancer so in Lexi's eyes, it could not get any better!
We sat with our cardiologist for a good hour going over the results and he decided that  the Heart catheterization should happen right away. Ivy's lungs look ~fluffy~ that is how he described it. Basically they have a cloudiness that needs to be looked at more closely. The ‘lung shadows’ are composed of the pulmonary arteries and veins. Apart from the pul- monary vessels, the lungs should appear black because they contain air. Ivy's have a fluffiness to them. Not a ton, but enough. Her lungs are also a tad big and her heart is a tad big. Her VSD is at least 15mm!!!! That is HUGE! But it is what has kept her alive. She leaks so much blue blood. So enough said, it's time to get moving!
 Her catheterization will take place on Wednesday of next week. If they feel she looks good enough for them to spend several days planning out her surgery they will send us home and schedule open heart surgery for the following week. If they see that she can not wait another day then they will just keep us there and do the open heart surgery right away. My doctor said he felt hopeful that she would come home, but possibly have an extra day in the hospital if she had trouble with oxygen levels when she came out of surgery. Well since she has trouble with that before surgery, it seems obvious she would still be having trouble after surgery... So we are expecting that. And while Ivy's amazing doctor is thinking we will come home, I am secretly hoping that they will just decide to wait no longer and get the surgery done during this stay and not another day. Ivy is ready, she is gaining weight, but she is blue as a berry, she is tired of waiting. She needs this surgery! Don't get me wrong, I realize they know best, and like I have said before, we have the most amazing team of doctors for Ivy and we LOVE our cardiologist Dr. Pophal!!!!! But we are human, we are selfish, and we want to see Ivy on the road to recovery. We long to see her NOT out of breath, Not blue, not tired, not hooked to oxygen and tubes, not struggling. 

And we also realize that there are still many long days and nights ahead. More oxygen and more tubes than imaginable, swelling and meds and scary times for our girl. Many dangers, many risks, many possibilities, many unknowns. We know that the next fight will be harder than the current. But the current is harder than the last. We fought like anything to get this baby home fast. We hurried everything we could hurry to get her home for surgery. We are home now, and it's time!

Playing in her bean box. Her very favorite thing to do!!

 AFTER ALL THE POKES SHE GOT TODAY< HOW COULD WE SAY NO TO SOME HERSHEY KISSES??????

GIVING RYLEE THE STINK EYE AFTER BEING TOLD SHE HAS HAD ENOUGH HERSHEY KISSES!

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Progress

Pin It Her Oxygen Saturation is in the 70's. From the 40's to the 70's is good but we really want to see 80's. She is getting the maximum oxygen we can give her and it i on 24/7 unless she gets sneaky and pulls it out of her nose..... so maybe 23.9/7

She slept until 1pm yesterday. Yes you read that right. And No she did not wake on her own, I just missed her too much and woke her up! She had gone to bed at 9 ish the night before.

We had our home oxygen device and portable oxygen delivered yesterday. The respiratory therapist that delivered it could not have been a more kind, gentle, sweet man! He moved Ivy's pulse ox probe from her foot to her finger and she didn't even cry!! This is a shocker because Ivy doesn't like ANYTHING on her hands or feet but clothes and shoes! At the hospital she carried on for 15 minutes because they put the hospital bracelet on her! And all the bracelets I have made her, HA HA, she will NOT wear them!! I wanted the probe on her finger because the one on her foot made it painful for her to walk. She is much happier with the new location!! And our respiratory therapist was fascinated with our little champion! He was in awe of the fact that he was witnessing an unprepared TGA, PS, Large VSD patient and able to give us the equipment we needed to get  our little sweetie stronger!! We have been so blessed by an excellent team of help for Ivy Joy! Have I mentioned how much I love our Cardiologist and the team at Phoenix Children's?? LOVE Dr. Pophal!!!!! He is more than an excellent Doctor, he is a Good Man!! He loves what he does and told us Thank You, for allowing him to help our daughter. But before that, he told us thank you, for giving Ivy hope! Yes baby girl, there is so much Hope for You!!!! You are a miracle, and we are just here to love on you as God does his work and shows off a bit! He loves you and will never forsake you!! We are so blessed to be here in the stands cheering you both on!!

Anyway, we have this unit now that makes it's own oxygen so outside of our little portable tanks, no big tanks to replace anymore. This unit is big and heavy and sounds like a MONSTER!!! When Ivy is up she has the unit upstairs and when she sleeps I have to take it down stairs! Did I mention its heavy, big, awkward? Up in the morning, down for nap, back up after nap, back down for bed, start over..
But... it has a really long tube so when she is awake she can play and move about and she is not so limited. Oh yes she tangles up very quickly, it's almost like she finds joy in watching me untangle her cords ha ha. I was worried about the girls not being able to sleep with the monster in the room. I was especially worried about them being afraid of the noise it makes. If you have never heard one, picture a big monster breathing in and spitting out. Now multiply the sound by say...100? Yep, that's the sound! IT is 7:45am and they are both sleeping soundly with the monster in the room! Thank you Jesus, I do not deserve the gifts and mercy you give me daily,... hourly.. but I give you thanks and praise for all of them!!

We bought her a walker yesterday just to give her more options for less stressful play and she is a maniac in that thing!!! She has definitely spent time in a walker before!!


Pictures.... I know, you all want pictures of the littles together. Well you see its really hard to get the 2 of them together and photographed at the same time... We have so much to juggle with all these cords and all this craziness. I am just finishing the unpacking this morning!!! I have not cooked dinner since we have been home (I know it's only been 2 days but still!) So today I am going to try really hard to get them to look at the camera at the same time and get a few cute pictures. I won't care if they are both smiling, only that they look at me at the same time and my camera settings are right. For now, here are the last few I took on our last night in China. The lighting was dark and dreary at the White Swan for our Red Couch photos!!

And here are the errors..... wrong settings.... Bad timing..... Yes they speak for themselves ha ha... 

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update~ Ivy woke up at 8am today!!!

Questions you asked,

Karen, they are all different brands. Happy to share specifics if you let me know the outfits your referring to.

Michelle, the black sweater is from the Gap.

Pam, I FORGOT TO MAIL THE NECKLACE BEFORE I LEFT!!! Im so sorry!! Its going out in the morning!!! 

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