JOYFUL

Pin It I said I wouldn't be back on today.... But sometimes things change. And I didn't want to keep anyone hanging when here we are just sitting in front of Little Einstein's. Ivy with both eyes closed, for the moment, exhausted from this long day. Me with huge wide eyes, living on caffeine today! Filled with joy and relief to be passed this procedure and one day closer to having my family together again!
I finally got my eyes and hands on little peanut at about 1:30 this afternoon. She had blood coming out of her mouth as she tried calling out for me. It looks like they must have cut her somewhere when they intubated or extubated her. I have not found the source yet but it continues to cause bleeding. She wanted to sit up... you can't do that for 4-6 hours so we had some, "Somebody help me! Get me outta here! Help!!" Going on. Once she understood what we were waiting for and why, she calmed down and being very loopy from the meds still she started calling out to all the nurses! "Hi friend! You doing ok? Ya? You are? Ok! 
Then moves on to the next nurse. Hilarious! Had the nurses in tears laughing!
Then she suddenly started bleeding from every place they attempted to put an IV this morning. Oozing blood everywhere.  They attempted IV's in each foot, each arm, one hand, one foot. All were bleeding. They finally got an EJ in her neck (So uncomfortable!) and that was bleeding too. Her mouth, her nose, lots of blood. They decided to turn off the heparin drip early and put her back on her coumadin tonight. Then she ended up needing a blood transfusion so we are actually in the process of that right now. They ran labs to check INR and she was 8.5! No wonder she's oozing everywhere! 
She ate a few cheetos, drank a lot of water and seems to be uncomfortable and anxious. She is on oxygen for her sats right now. When we take her off she drops to the high 60's so she clearly has some recovery to do tonight, the cath was long and took a toll on the little peanut. Any way, the end of this update is the part I'm so excited to share!
Ivy's nurse from the transplant team came in to see me tonight. While she did not speak of her overall right or left side function or the future as far as Ivy's heart goes, they are saving that for our appointment with the whole team on Thursday. She came to visit us tonight because she could not wait to tell me that Ivy's pressures are NEAR NORMAL! Her pulmonary hypertension has dropped more drastically than they ever experienced in just 3 months and they are ecstatic! She will no longer require oxygen!!! Did you hear that.... coming home with NOTHING hooked to her! She will stay on Sildenofil until her next cath (no date for that as of yet but guessing 3 months from today) and then wean off right before that cath to measure true pressures with no assistance from the medication. This crazy expensive medication is not covered by our insurance so as absolutely out of control happy happy happy as I am for baby girl, I have to be honest and tell you what a financial relief that will also be to Bryan and I. 
The news on her coronary artery is that there is a suit has scar tissue growing all around it and the scar tissue has basically pushed the coronary artery to a nearly closed surgical clip right next to her RCA. Scar tissue grows around foreign objects and this scar tissue that has grown has caused her coronary to be nearly closed in one area. It is not the area with the holes. It is lower and it was successfully ballooned today. Since she is so young they felt that a stint was not an option but it will likely need to be ballooned again during her next cath. The great news is that after it was ballooned, it showed better flow! 
Alright, back to cuddling my little peanut! She is waking up and she has a tummy ache :(

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer. Pin It

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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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