Ivy update

Pin It It has been a long day! Even longer I'm sure for our baby girl! She is doing so great, guzzled down a whole container of chocolate milk practically in her sleep and didn't even throw up! Ivy drinks only water at home. I sure hope that drinking milk and smoothies and pediasure will be in her future at home!! She is on oxygen right now but we hope to say goodbye to that by morning. 


And as for her heart, Good and not so good.
They were able to do everything they went in to do. They made her pulmonary artery 4mm bigger than it was. Praise God who can do all things. However... It turns out that there is a bigger problem.
You see even after a successful increase in the size of her pulmonary artery, her lung pressure remains very very high. The drastic leaking from the tricuspid valve, was left unchanged.


I have needed time to grasp all of this. To remember, that Gods plan is and will be amazing. And that He doesn't want Ivy to go through anything more, and He will get her through it. 



Do you remember when we were waiting for the donor organ? Well, Ivy couldn't survive much longer without surgery. And still the size she needed was not coming in. The homograft they had was several millimeters bigger than he had hoped for. But she couldn't wait any longer, so, they made it work. 


And now It is squishing her coronary artery. 


It looked fine in the pictures they took after she came off ECMO. But her chest was still wide open at that time. So they are thinking that when they closed her up, maybe it  caused some unknown  compression? 
Regardless, this new finding sure does explains the tricuspid valve leakage and the hypertension. The lack of energy, heck she should be sleeping all day! But she wasn't, because she's a miracle!
So while it was too big of a homograft, it did save her life. 


So tomorrow they will do a CT scan to see if their finding is indeed correct. And if it is, they will need to discuss the plan to open her heart up again and replace that valve.. again. 


And while I can hardly breath when I envision her going through all this again, she is sooo much stronger this time around. 


No parent wants to see their child in pain, discomfort, danger, or suffer! So I won't make myself out to be something I'm not. Im human, I'm mommy, I love this girl. I want her to be done!! 
None the less,  since I'm just a human, just a mommy, just a regular gal.. I don't know what to do or how to fix this. And God blessed us with a doctor who does. A doctor who eats goldfish out of our daughters hands, looks at her with a twinkle in his eyes, promises her he will do everything he can for her, honestly cares for this little girl that he helped us bring home from China. I will never forget the day we sat with him and he looked at her file and her picture and then her file again and he told us that he would be honored to be a part of Ivy's healing. He didn't sugar coat anything. He had a very old file to look at and it was packed some seriously complicated funky heart business. And he smiled and hugged us and said, We can do this!!! And we can!!! I just don't always like the things she has to endure to get to the next place. Life does this. And we become better people because of it. But it's my baby.... I would trade places with her in a minute! Fix my heart not hers. And then I get back on my reality box and take a big sigh of relief that Gods got this, He has it all orchestrated and it will be marvelous! 




So I'm on my knees tonight, thanking the one who knows what he's doing and knows what is best. We will find out tomorrow how soon this has to be done. Tonight, I'm so very blessed to say I am snuggling in the hospital bed with the cutest 2 year old on earth and she is my daughter!! Pin It

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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