Out of there!

Today was a glorious day! We were discharged around 1pm and the whole day was ours!
Ivy was very a little scared and weary of what on earth was happening next but she was clearly excited to break free of this place!
We headed to our hotel to drop off our things. She was not too sure about that! I assured her this place was good since there were fries in the galleria attached and she was all over her fear!
We had a fry party in the room and just played together in the room and out on walks in the stroller all day. She skipped nap and stayed up until 8:30pm.
She is happy, smiling and laughing and eating up a storm. She had pasta with Alfredo sauce and a baked potato for dinner. I thought she was going to explode she ate so much! 
Tomorrow we start our day with lab work at 8am. They would not let us leave with her picc so she will get poked tomorrow :(
We see Dr. Marx at outpatient clinic later in the morning. We will head back to Arizona later tomorrow. No idea what time yet but I will try to post tomorrow along with some goodbye Boston pictures!
Love to all of you.
Thank you for praying us through this adventure!
God has blessed us with the most amazing little girl and we are so honored!!!

 Ivy's new favorite snack. She ate 3 of these yesterday and 3 today and asked for one tonight (number 4!) She loves croissants!!!

               Leaving the hospital!!!!! Extra food in hand as usual! 

 I took her  right to her favorite french fry spot and she was so excited while waiting for those hot little numbers :)

 And I tried to get her to try the new fish bites...... uh, ya, not going for that! Can't say I blame her either! 

 After an early dinner we were blessed by a visit from Ivy's sweet friend Maggie!!! They were so cute hugging and kissing and sharing raisins! What a gift it has been for me to watch Ivy glow all day long!

Joy in ALL things!

This mornings INR was 4.25 and this afternoons second check was 2.8! Perfect!!! 

But.... Always a big ol' butt in the way :)

Her potassium was crazy low! So even though she was that close to getting the ok for discharge.... Well, she didn't. 

                                If her INR is still good tomorrow....

And IF we can get that potassium up and out of the danger zone

We will be discharged by tomorrow night!!

And we will be FREE!!!

We will stay the night in our hotel

And see the cardiologist on Friday Morning

Have labs drawn and echo and x-ray

And then

Fly out of here!!!

Home for Bubby's Birthday (it's Friday)

And Home for the Super Bowl!

And I heard someone dropped off a whole heck of a lot of Cool Ranch Doritos at our door step today?!! 

PARTY!

                                            A visit from our friend Lily and her mama

                                       Trying to go to sleep in our very loud room...

Nothing special, just playing around because we were bored

Miracles still happen! 

Never put God in a box!

Never underestimate the power of prayer!

And most important, Find JOY in ALL things!

Wordless Wednesday

Super Bowl?

                                INR as of this mornings labs

                        IS THERAPEUTIC!!!!

We had a setback when they changed her diuretics but we are back in business now! Ivy has a little cough but her chest x-ray looked good and she is no longer hooked to ANYTHING! 

The plan for today, a nice green lunch (INR is actually a little high right now...) A CT scan after nap. Lots of bike rides and stroller rides! Tomorrow and Wednesday should be all about getting us ready for life at home. We are praying for a Thursday discharge, a Friday Cardiologist appointment and a flight out of here after that!
Our team made it to the Super Bowl, and Ivy wants to eat chips at home while watching the SanFrancisco 49ers win!

WE REALIZE that with Ivy and her complexity, anything could change at any time...... But we never underestimate what WE KNOW CAN BE DONE!!!!! Thanking HIM always

Feeling the Love!

INR

Stinky INR is down....
And she's got that icky heart cough going on today because they took away her spironolactone yesterday. I knew that was a mistake. The NP made that call. I swear I had to pick my heart up off the floor when she told me that she was stopping it. I plan on speaking with the weekend fellow in a few minutes. But for now, we continue to give thanks for this day, this child, this life. And also, her little friend Maggie, and Fries!!!

Yes!

                                    It is good news!

Great news in fact!

The only thing keeping us here is that crazy low INR. It is creeping up at the speed of a turtle with 1 leg. Darn. But you know what? This is a great reason to be stuck here! We can do this, we are pros now. We just really miss the family and we really miss home. So come on INR!
Explanation~
Ivy needs to have a therapuetic PT~INR before we can get discharge moving. 
INR stands for International Normalized Ratio. The INR is really just the standard unit used to report the result of a PT test. PT 
stands for prothrombin time. It is a measure of how quickly blood clots.
You and I and the average person who is not on anticoagulation should have an INR of approximately 1. The higher your INR is, the longer it takes your blood to clot. The happy spot/therapeutic INR for Ivy is going to be 2.5. She has been taking Coumadin for 8 days and she is still only a 1.3? She is taking 2-3 MG's a day. Tonight she got 3mg's and we really hope tomorrow she will be up! And the little stinker keeps eating broccoli! High in vitamin K which lowers your INR. We want her to have a normal diet with no green veggie restrictions at home so we have to let her eat the broccoli. 
It feels so good to say, we are only here for anticoagulation issues right now. SO GOOD!

In photo above her nurse had just taken us from our play time to get her PICC dressing changed..... Brave face time!

Today I am noticing so many new things about Ivy. And I am trying to just rejoice in them and not let it make me sad that she couldn't do these things before! She lets me tickle her now. And she says do it again. She likes to be tickled under her chin like her sister Lexi! She never let me do that before. She is so playful. She likes to play tricks on me and she likes to run me down with her shopping cart! Tonight when I was carrying her back to the room, she was telling me not to hold on to her, to keep my hand only under her little tiny bum. Before she would have to have one arm wrapped around us and her hand gripped on our clothing like she was dizzy and expecting to fall. She has been doing oodles of walking. After 3.5 weeks in bed, she has lost the very tiny amount of muscle she may have had, but that little girl walked the entire 42 bed unit today, pushing a shopping cart with at least 10 pounds of pumps and loot in it. She wants this! SHE wants it! She pushes herself for the first time since forever. She has a little friend (4yr old Maggie) and she goes down the halls saying, Wait for me Maggie!! Oh Lexi is going to be so happy that her sister is coming home ready to grow and ready to play!!! Oh how I miss my sweet little Lexi!!!

Tonight when I put Ivy to bed she could barely keep her eyes open but she did not want to go to bed. She is tired of this place. We both are. She feels good now and she just wants to go home and live life. Come on blood... Thin down so we can get out of here!!!

Discharge Echo

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."

Short and sweet

Trucking along still!! Chest tube is OUT!

INR's still not where we need them.

Porky is still porking away! 

She is so happy! 

She is getting so strong!!

I'm just over the moon right now.

Elevator rides are the highlight of her day. 

This is really a nothing kinda video... but at least you get to hear her incredibly sweet voice.

The buffet on wheels

I'm just in awe of what is happening here!

In Ivy's heart. In my heart. In your heart. In hearts around the world. In AWE!

With an x-ray that showed no change in the air pockets from yesterday, the doctors took a close look at Ivy Joy today. No signs of distress. No change in sats. Eating like a teenage boy (non stop), awake and giving her barbie a bath in the wash tub that was supposed to be for her bath.... this little girl is amazing! She has been through so much. When the doctors doing rounds walk to her bedside to comment on her bow and her snacks and so forth she puts her head down as if they will not longer see her. I tell her to remember her manners and at least say hi. She very discreetly opens and closes her fingers without lifting her hand just to humor me. But when they walk away, head still pointed down, she says the loudest, BYE... you've ever heard from her tiny voice and they all smile and wave. She is so fierce, yet so frightened at what might be ahead.

And you know how we moms are. We get these hunches when we know somethings not quite right. And I have had way too many of  those hunches. And I am just so happy happy happy, that my hunch right now is that ALL IS WELL!!

My little girl feels good! So very good!

It took all morning, but at 2:30 it was decided that Ivy was more than ready to move to the floor! Out of ICU! And once I got her in that Go Cart... She was not getting out! I promised her it was just for rides to see babies and go out to eat! Well, that was that! Mention food..... DEAL SEALED!

While we were cruising the halls we had a special delivery from some sweet bloggy friends in Texas! Hand delivered and excitedly opened by a present loving toddler! It gets no better than this for Miss Ivy. Food Food Food!!!! She loaded it all in to her cart and we were not allowed to remove it! 

 Take a look at this spread! Fit for a princess indeed! Thank you Shari and Jane! We both felt so very loved by you today!!

Tonight the sparkle was back in Ivy's eyes! She is so much more relaxed. We have our tiny shared room now. Our room mate is an adorable 2 month old girl. Ivy had some Dora time in the room but for the most part, we spent 7 hours out walking the halls and feasting in her all you can eat, buffet on wheels. She is ready to go home and really wants no part of her new room. We take baby steps with her. What she is afraid of today, she has proven to be fearless of tomorrow! Trust 

Dr Baird will be making the decision on what to do with the chest tube tomorrow. And we continue to pray that the air pockets are smaller tomorrow. Better yet, GONE! 

We continue to work on getting Ivy's IVR therapeutic so we can get her off this Heparin pump. She starts PT here tomorrow. And we will likely be found strolling the halls with our Buffet on wheels the rest of the day! My sweet girl has earned every second of these special days! She can absolutely have whatever she wants! We will fix bad habits when we get home! Until then, the world is yours Ivy Joy. We love you baby!

Next steps

We are making progress in the right direction here. It started with getting that ventilator out and 10 hours later the eating began.

It has not stopped since

Ivy spends her days eating, playing with stickers, covering her arms and feet in lotion, and watching Dora. 

                     This is the veggie chip bag she decorated with stickers!

                                       
                                    This is the food coma she slipped in to (kidding)

We had so many lines coming from every direction that it has been hard for her to even turn her head to the left and right. She had lines coming out of each side of her sweet little neck. One in each hand/wrist. Her 2 canal PICC coming out of her upper arm. Another coming from her foot. A chest tube coming from her chest. The feeding tube coming from her nose. The oxymeter on her toe. The blood pressure cuff on her ankle and the cardiac wires from her chest! What a mess!! She was trying to be still all the time, afraid to get tangled. 

Taking silly pictures of ourselves!

Well today she got a few of these things off of her body. Her neck is free and one hand is free!! A great day!
We were given the thumbs up to go on a ride in the ~go cart~ but she cried crocodile tears when I offered so we stayed in the room. She associates that big cart with going for procedures. Blood draws, new IV's, invasive things. She wanted no part of it! I think she has very good reason to feel that way so we got that cart out of our room and went about eating Cool Ranch Doritos and watching Dora. We watch way too much Dora. And she eats huge amounts of Salty Snacks in hopes of getting that sodium up but no luck so far. Her potassium and sodium are still low. She eats 2 baked potatoes a day. They are loaded with potassium..... she just pee's it right out. So we continue to let her graze on Doritos and salted nuts and veggie straws between meals as well as supplement and just hope that her little body will start to absorb it all.

She is taking in enough calories that they actually want the feeding tube to come out. I wanted to keep it because she can't tolerate potassium by mouth (I don't know who could?) and she still takes a lot of meds by mouth at this point. Putting it in the feeding tube has allowed her to skip all the nausea that would be brought on by that many things going in to her at once. So it is staying in for now.

This picture was taken just hours after she got her breathing tube out. Sitting up!

Ivy has 3 air pockets in her right lung. She still has a chest tube and that tube has had a leak in it since the first day so her surgeon has been watching this closely. This lung issue and the fact that she is still being weaned from the RX Milrinone, are the only things keeping her in the CICU. If it doesn't start to go away or at least shrink it could cause her lung to collapse. Right now she is not showing any sings of distress. Her Sats are very good. They took her tube off of suction today and changed it to a water seal. If this is not going to resolve itself they are going to get a really good idea of that on tomorrow mornings x-ray. So our hope right now is that it looks smaller tomorrow. If it does not start to resolve itself then she will have to go back to the OR for a new chest tube, placed up higher this time. 

Ivy's Echo revealed that her left ventricular function is great! Her Mitral vale is working beautifully and therefor her left function has returned to normal! Her right side shows less than desirable grades. Doable for a super hero like our girl, but our surgeon says that her right coronary artery is pretty tattered up and is what is causing the issue. We will just keep on cheering on those God made bypass veins and she will take coumadin to help the blood pass through with less work. We will continue to check her INR's at home as we were already doing even though this new mitral valve does not require it. Her pulmonary hypertension (lung damage) will be treated with sildenofil again. Nothing we are not familiar with.

The rest is nothing! We can handle this. We have a strong girl. She has proven that too many times to mention and we are thrilled to be bringing home a little girl who will now be able to grow and play and thrive!!! How awesome is that?

Once we move to the regular floor it will just be a matter of keeping Ivy's INR therapeutic and getting that discharge echo! We will stay locally for a few days, see her cardiologist as an outpatient for one last visit and then we get the thumbs up to GO HOME!!!!!

I don't know what that means time wise. Tomorrows x-ray is kind of the author of that story.... But my guess is 2 weeks or less?? 

Sounds like forever, but honestly this has been Ivy's smoothest recovery ever. She looks more and more like Ivy every day. Still far from the Ivy she will be when healed, but getting there. She is fighting sleep instead of asking to go to sleep (a huge good sign), her face is filling in, her liver is a little bit smaller already, she is smiling and laughing a little bit but still very on gaurd when people are around. When the doctors do rounds she gets very stoic. She loves 2 of her nurses like no others! Ali and Jen. She asks for Jen when she is not working and tonight she cried a river when I told her Jen wasn't coming. Last night they bonded over Dora until 1am so they are now besties haha. Every nurse here is sensational! Yesterdays nurse is mommy to 2 Chinese girls like us! It was magical having her with us all day and knowing that we shared something so special. (I can't remember who on here mentioned knowing this nurse but if your reading this... She is a gem!!)

And if you are the sister in law of a male nurse here at Children's and you live in Texas... first off, thank you for sending your love and prayers and second, your brother in law is adorable and so kind. We have not had him as our nurse yet but it was so sweet of him to stop in and tell us about you and check in on Ivy! 

Thats all folks! I need sleep! Goon night