Ivy's language explosion, Talking with the littles

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Ivy

I wike the bumps in the road mommy! Do you wike the bumps in the road?
I do like them Ivy! I wonder if Daddy likes them? 
Dada, do you wike the bumps in the road? 
I do like them Ivy!
Mama.. mama! Dada wikes the bumps in the road too!!! 

At gymnastics today. 
Mama, wheres Wexi? 
She's right there on the balance beam. 
I see her mama, I see her! Wexi's doing gymnastics! She's doing weally weally good! I'm proud of her mama! I wike watching Wexi doin weally good gymnastics! I weally wike it!

Ohh mama, you washed my blankie! Thank you! 
Ohh mama, you made my oatmeal just right! Thank you!

What's wrong mama?
Nothing's wrong baby, why do you ask?
You wook sad mama. You missing dada?
Come here mama, wet me gib you a hug!! (patting my back in the most precious way!)

Mama, I'm missin Minnie Mouse today. I want to go back to Disneyland to see Minnie Mouse! I want to give her a kiss and hug! 
You do? What about chip and Dale?
No no no! Chickendale try's to eat my chicken! ChickenDales a naughty naughty boy! He's weally mean!

Mama, what are you looking for? 
Im looking for the peanut butter.
For Lexi?
No, for Brady.
Well, I'm sorry you can't find it mama. Don't worry. When Dada gets home dada will help you find it, don't worry!

I'm sitting here right now typing and she is in her chair eating rice with chopsticks. I can NOT eat rice with chopsticks! I can not even eat an egg roll with chopsticks unless I poke it! 

A random woman walked passed us today. Never saw her before, didn't exchange any words with her, nothing. 2 minutes later she walked back up to us and said, That's a walking miracle right there, a walking miracle! If she only knew how right she is!

Her belly is flat, no edema whatsoever. The days, each one after the other are bringing more activity. She is gaining weight. She is happy and bossy and funny and a little stinker at times! 

I don't know what tomorrow or next week or next month will bring, but today, the right here and now... IS SUCH A GIFT!!!

Lexi

Mommy, you know what? 
What?
God gave me a sister so I would never feel alone.
Your right baby, he sure did!
And that's why Ivy and I both have black hair. Because He wanted us to look alike so everyone would get us mixed up!


Mommy do you remember when daddy wasn't using his head and he said they don't make surf boards in Arizona? 
Oh yep, I remember that.
Ya, me too! Daddy sure is a cwazy dad!

Mommy your the best mommy in the whole world! And daddy is the best daddy in the whole world! And I'm the best daughter in the whole world!
:)

Mommy remember when you said, doing our best is more important than being the best?
I sure do!
Well, you were wrong... Today Miss Vanessa said my toes were pointed the best and it felt important!
Oh dear :(

Mommy,  Ivy wants to wisten to wobble again. I know your ears are tired of the same song over and over, but try and remember that she is just a baby and she needs this time to relax!

Hi mommy!
Hi!
So.... I was wondering.... Is this CD Yours?
Yes
Well, I was wondering if I could use it to trace circles?
Sure
Thanks Mommy, Your a great share er.. and your setting a great example! 
(I think she must have heard that a few times before..)

LIFE IS GOOD!!!






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Thank you!

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Thank you to all of our friends around the world for the outpouring of love and prayers over these past few weeks for Ivy to be home for her Birthday!

She was!! 

 It was a magical day.. HOT, but magical and every bit of the perfect day I dreamt she would have on her miracle day! 

It is so hard to believe our little tiny dynamo is 3! 

I have lots of pictures to post from her special day and I will do so as soon as I can, but today, I wanted to fill you all in on our trip to Lucile Packard for Ivy's transplant consultation.

We met with every person one could imagine. Social workers, child life, nutritionists, doctors, nurses, and the transplant surgeon. She had test after test and was an absolute angel the entire time. We have been seeing a great change in her since starting some of these new heart failure drugs and can certainly tell that she feels so much better. We will continue increasing her dose and using oxygen 24/7 as a medicine for her hypertension. 

Anyway, this morning the transplant team all met to discuss Ivy's history and the path they believe is best for our daughter. And after much consideration they have decided to decline listing Ivy for a transplant. I know this sounds like grim news but Dr Kaufman assured me that this does not mean she will never be listed, it just means that they feel there is still hope for Ivy's heart to get a little better with time. They feel that with some bypass arteries growing around her coronary and some hopefully positive response to the oxygen, and new medications, Ivy's heart may still be able to give her a good quality of life. The right side of her heart has terrible function, but they believe it could just need more time. It has only been 4 months since her 5th open heart. They want to give it a full shot at recovering before they say it is absolutely incapable of sustaining life. I appreciate their optimism. I call it hope. I know that every part of Ivy's life and miracle holds true to Matthew 19:26

But Jesus looked at them and said, "with man this is impossible, but with God, all things are possible."

And so the plan is to wait and see. She will continue with her new meds and oxygen. She will have a heart Cath at Lucile Packard on August 4th. And if she stays stable up until then, and shows a trend for the better in her  heart Cath, then we will stay off the transplant list and with our faith of a mustard seed, wait with anticipation for God to continue sketching out the plan for Ivy joy. He no doubt loves this little girl bigger than anyone could ever comprehend. And while this story may not seem like much of a fairytale to most, we give thanks every day that we have the 2 sweetest little princesses in our lives because He trusted us! 

I don't know about you, but I think this is going to be the best mothers day weekend ever!!! 

Ivy's Birthday Carriage!

Worn out from the party and being comforted by her big sister.

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Freaky Friday and a Super Sweet Weekend fundraiser for Ivy

Pin It If you love the pettiskirts you see my girls wearing on the infamous tandem trike and the other photo below... You won't want to miss out on this incredibly sweet fundraiser my sweet friend Kimberley is doing for Ivy this weekend only. 

FUNDRAISER FOR IVY JOY THIS WEEKEND :) 50% of the total for all hair items will be donated. 30% of all pettiskirt and clothing items sold will be donated. Friday, Saturday and Sunday. 
This includes any items sold here on the facebook page.
Any items sold at the main website: www.sophiajaneboutique.com
And any items sold at our Facebook Page:https://www.facebook.com/pages/Sophia-Jane-Boutique/298033819881
And any items sold at our Etsy site:
https://www.etsy.com/shop/SophiaJaneBoutique

And back to the happenings here with tiny miss!
We are still here... in the hospital.. bleh

It's hard sometimes, finding joy in all circumstances. Listening to your adorable toddler tell you she wants to go home and wondering what she really thinks of you for keeping her here day in and day out. 

But life is hard. And we have chosen to make the best of every circumstance we are handed. And even though it is hard, it is so much easier when you cherish every single moment, no matter where the moment is. And you all know the beautiful saying, life is not measured by the number of breaths we take but by the number of moments that take our breath away....

Well this little darling takes my breath away!

My husband takes my breath away! Juggling all that he is all with love and grace and loving me from the depths of his soul in the midst of it all!

My big kids take my breath away! They have handled this year with such grace! 

My little Lexi, TAKES MY BREATH AWAY!

Goodness..... I need to catch my breath! :)

Honestly, you may think you should feel bad for us because we have had a really ROUGH year.... But we are so richly blessed, so in love, so loved, so humbled that God would trust us with such a difficult path and a hard hard year. Trust us.... just a couple of regular folks... with so much!
Every day, we have an opportunity to sulk in our sorrows.. But what sorrow? We are given a chance, a choice, a wonderful opportunity to let God shine through even troubling times. And shine He has!

We were blessed this morning with a nurse who introduced herself by saying that she prayed for the right assignment (child to care for) today and when she arrived it was Ivy. She shared that Ivy's blog is on her phone and that she goes to our church! Only God! How sweet He is! JOY

We have been so blessed by the sweet nurses caring for us these past 2 weeks. I was sharing last night with my nurse, after she asked why on earth we were here. I shared that 90% of our care comes from our nurses and we know they love Ivy to pieces. They are so excellent with her care and with their huge hearts for her special unfortunate circumstances. They know whats going on, they get it, and they care.  JOY

We had a visitor with french frie's in hand this morning, we have 2 little visitors coming later, one with a special heart of her own and then tomorrow, Bryan and Lexi will join us for the rest of the weekend. So much joy to be found in the love we are surrounded with. 

Don't get me wrong, I am absolutely going stir crazy in here.... (sorry I snapped at you on the phone babe), but I feel calm and peace in knowing how close we are to getting out. And I am well aware that things are just going to get even more crazy as we head towards the road to transplant using a different state than we live in...
But God will equip us once again!

Why we are still here~
Ivy's sodium has been dangerously low so we were held back a few more days in hopes of getting that in line. We have fluid restrictions and she is back on her smart water so we are hopeful it will go up soon. The girl with her fries and chips and all that salty food...... Go Figure :)

Have a wonderful weekend everyone!!!!

1 corinthians 13:13 

and now these three things remain: faith, 

hope, and love. But the greatest of these

is love.

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Ivy Joy

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 We are approaching 2 weeks here in the hospital and both Ivy and I are ready to bust out of here! She is such a trooper, honestly, if you could see this child's demeanor you would melt! As do the doctors and nurses, a true super star with cuteness and a voice that makes you smile instantly to tie it all together!
This morning she said, 
Mommy, I sad 
I told her it was ok to be sad but what was making her sad?
She said, 
I missin Daddy and Bubby and Catchidy, and Ryree and Kinsie and Wexie. I missin my tower and my couch and my home and my carseat. I need to peel eggs in my tower and I need my swimsuit. I goin swimmin after bwekfast! 
I am trying my darndest to get this baby out of here. But she is fragile and we need to be careful.

So this is where we stand...
Ivy is off Milrinone (IV heart failure med) and doing just fine without it for now.
She is came off her last IV diuretic yesterday afternoon. She has had her PH meds ramped up to the highest dose and we feel it must have relieved some discomfort because yesterday she walked the hall, up and down 2 times which is more exercise than Ivy has seen in a very long time! Her legs were quivering from having been sitting for 2 weeks but she pushed herself and insisted. When she was done.... she rested the rest of the day lol! She is on a new heart failure medicine as of just last night. We will be raising the dose of it over the next 48 hours. She is tolerating it well.

We found out that Ivy has zero antibodies. This came as a complete shock... and if you know about transplants already then you know this is very good!

We have an appointment at Lucile Packard Children's Hospital in Northern California on the 7th of May. This will be our new hospital away from home. (We are originally from Northern California)
We will be spending at least 3 months there after Ivy is discharged with her new heart. It is close to family and close enough for visits from Daddy and the bigs if they happen to be in school at the time. We will be able to wait at home for a heart and once we get word, we will fly (quickly) to Lucile Packard. 

Our hope and prayer is that Ivy will come home by the end of this week or early next week. Hold her own with these oral meds. Have her Birthday at home a few days early (her party is the 4th) and then head to California on the 6th (her Birthday) for the all day, outpatient appointment on the 7th. 

We are also praying that she can take a regular flight, not a med flight. (because with transplant ahead, we need to save those insurance dollars). We were advised not to drive since it would be hard on her little body to travel for such a long time. We will need to take oxygen on the plane so we have the whole airline thing to deal with as well. All my wheels are turning, I know what I need to do, now I just need to do it! (but honestly.... I just want to take her home and pretend life is about to get easier...hahahaha, whatever right? Not Gods plan! He likes to keep us on our toes! 

So thats about it. We are doing good. We are still processing how this will all work. We are anxious for answers and of course for another 4 months away from home. For those wondering, yes, Lexi will be traveling with me this time! Praise God!! And during any time that there is no school, the bigs can be with us as well. 

The prayer request to get us out of here is just for Ivy's INR to get therapeutic again and to continue with no problems. We are still holding on to hope that it be this Friday!!! 

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with  hope by the power of the Holy Spirit.   Romans 15:13



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Ivy Update

Pin It For those of you who have not followed the Mission To a Million Page (you do not need to be on Facebook to find this, just google mission to a million, it is a public page)
Ivy underwent her heart catheterization at 1pm today. We were told yesterday that her heart and hypertension were so bad that we should be prepared for her to code, and come back up on ECMO. Their exact words! 
This took us completely by surprise and left us certain that they were just covering all their bases, based on fear. We were scared. Last night Bryan and I talked and prayed and then prayed some more. We both felt confident that they were wrong about Ivy and underestimate the strength and fight our girl has despite her poor little heart. We felt that moving Ivy by air ambulance, getting her settled and all tests redone, before someone else did this exploratory Cath was just not in her best interest. She has been here a week, asking to go home every day, crying for her family and her real life back. We were in a tough situation but just felt a sense of peace that we were doing the right thing. We were blessed with an amazing anesthesiologist. He just happens to be the father of one of the anesthesia fellows at Boston Children's Hospital. He called his son last night and of course, his son remembered little Ivy! He used the same anesthesia that he would have used going in to an open heart surgery of a very poor working heart. It was perfect. She had no problems whatsoever! They were most worried about anesthesia, her pressures are so high.... AND GOD SHOWED UP, and little Ivy fought and she is doing well!!!!
She got to her room about 4:20 and her ventilator came out at 7pm. She looks good!! 
The purpose of the Cath was to make sure she was even a candidate for a transplant. They used oxygen and nitric acid to see if her arteries would relax and they DID! This is so promising as it means that her PH can be more aggressively treated and she could get a heart and not need a lung if that is what it came down to. We have all the data needed to get the ball rolling now and Baby Girl has a fighting chance! She is so stinking amazing!!!! Our cardiologist told us to expect her to be very sick recovering from today and for it to take significant time to get her on a cocktail that will leave her feeling better and able to come home. My thoughts..... Watch out!!! Here Comes Super Ivy!

Ivy on Wednesday morning giving herself a checkup

Ivy last night just before bed

Ivy just before going in to the Cath

 Ivy tonight just before coming off the Ventilator

Praise God from whom all blessings flow 

James 1:17

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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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My Treasure

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                 Time is our most precious asset

                            Time to love

                          
                          Time to spend

                        Time to rejoice

                             Time to heal

                           Time to grow

                           Time to learn

                                                  Time to have fun

                                                              Time to share

                                                                 Time to give

Time to listen

                            Time to laugh

                     So thankful for TIME!

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