Great News!

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Wearing only a dress, shorties and a diaper... Miss Ivy weighed in at 20 pounds today!! She is 31 inches tall (or short). Her electrolytes were PERFECT! And her BNP Was at an all time low (For Ivy) of 379! Ivy has been as high as 20,000! So it is still high, still heart failure, but trending way way way way DOWN!!! Her heart likes it's new heart failure medications. She was not able to ramp up to her final dose of carvedilol because her blood pressure is very low right now due to all the meds. She is 70/40 tonight... We are watching her closely as she gave us quite the scare last night. 
We could not feel more content and overjoyed today. We have been having the best days, the best of times!! We got the ok to take trips with her, to let her be a kid and enjoy life!! Who could ask for more?
Tomorrow we have recital pictures for Little Miss Lexi! And Sunday Make a Wish is coming to help Ivy dream her biggest wish! Next week is recital!! The kids are all out of school and summer is here!!!!! Have a blessed weekend!

we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. (Romans 5:2-5) Pin It

ramblings from room 9

Pin It I was not going to post until tonight after Ivy was out of the cath lab. But sitting here with anticipation for what I pray will bring Hope, has left me with a need to ramble. Girls are like that. Or at least this girl is! My sweet husband is home with the precious family holding on to the same hope. And from afar, I feel so very lucky to be the family that we are. I was telling my girls earlier, that while I would not wish what we are going through on anyone, I am so grateful for who we all have become because of it. For I am sure that it for many, it feels good to be able to say, "we are so blessed by 3 healthy kids and a wonderful life and everything is just so perfect", but honestly, what would you ever gain? We have gained compassion and strength. We are enveloped in our faith and our family is closer than ever. My kids have a better relationship with their dad and their Father in heaven. We lean on each other better now. We are not afraid to ask each other for help. We find joy for all things, we know how to find joy in something as simple as a wet diaper! We know what it is like to miss each other desperately and we appreciate every moment differently now. We have seen suffering, real suffering, and we have seen pain that would break your heart. We know what love looks like in a whole new way, and no, we would never want to have life any other way. Do we wish that it was not this way? Of course, we are human, we love our darling little Ivy, we want her to be given no more of this suffering!! We beg God for this daily! But sometimes God answers our prayers differently than we expected. But he still answers. And this is our life, our family, our orchestrated by God time on earth. And at this time it doesn't involve bells and whistles, it involves a whole lot of faith, a whole lot of trust, a whole lot of hope, and a mountain of LOVE!!

Ivy Update
Ivy is in heart failure again and the large belly issues she has been dealing with is likely a result of that. The right and left ventricles have a lower function than she has ever seen. Her status was labeled critical on the consent form I just signed for the anesthesiologist due to the low cardiac function of her heart right now. She was ventilated this morning around 9am. They are performing a TEE Echo cardiogram (echo through the throat) and a heart catheterization as we speak. They are looking at the mitral valve and the right coronary artery. If there is anything they can do for the mitral valve they would need to do open heart surgery tomorrow and her surgeon is prepared for that. If there is anything they can do for the coronary artery they will do so in the cath lab today. I may update later tonight via Diana if she is still awake at that time and willing. 

Many of you have been texting emailing and FB messaging me about being here alone. I am not alone. I am wrapped in the loving arms of our father and surrounded so graciously by all of your prayers. I have a loving husband at home making sure our kids get the closest thing to normal while we go through this valley. And there is nothing that makes it easier to focus on Ivy and what we must face next through this valley than knowing all is well with the other half of my heart! We also need to remember that between the trip to China, the long PCH stay all the shorter PCH stays and the long Boston stay and a few more short PCH stays and now another Boston stay all in the course of 10 months........ My husband HAS to work so we can pay for Ivy's Cool Ranch Doritos my friends! So please don't worry about me. I am blessed with some very sweet new friends and old friends who would all be here in the drop of a hat if I just asked. And when the time comes, when I feel I am ready and the time is right, I will indeed make those calls. But for now, I am most calm and most comfortable, just being here alone. I can focus on Ivy, cling closely to God and have ZERO distractions! I am sure that all of you praying for peace for me has been a prayer God has not taken lightly. 
Our family is so blessed by my mom who will once again be flying in to help care for the crew (mostly Little Lexi) so that Daddy can go to work. After all, our hope is that Ivy is home eating her chips on her beloved couch in no time at all!!!

I asked for strength 
and God gave me difficulties and made me strong
I asked for wisdom 
and God gave me problems to solve
I asked for prosperity 
and God gave me the strength to work
I asked for courage 
and God gave me dangers to overcome
I asked for patience 
and God placed me in situations where I was forced to wait on Him
I asked for Love 
and God gave me troubled people to help
I asked for favors 
and God gave me opportunities
I received nothing I wanted and received everything I needed.
My prayers have all been answered. Pin It

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

Surgery Is Tuesday ~Go Team Ivy!!~

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 Have you been praying for our baby girl??

I ask because we feel them!

And we see them!

                                                                           

Ivy felt like this.....

                        And this....

                                                

                                          And just because it should not be possible to look this cute when you are this upset... I'll show you this last one!

 But that was the last time we would see those expressions!

 Because now she is HAPPY!!!!!!!!!!!!!!!!

 And she is less swollen!!!

 And she seems to know that something great is on its way!! Something that is going to make her feel better!!

 Tuesday morning at 9:30am Ivy will have her surgery. We hope to do something great with that tiny tiny valve. We pray that her lungs can handle this. We pray that her Pulmonary Hypertension can be at least cut in half! We pray that her body can handle all of this, she has a little cold right now so we need that to be GONE! 

Please let us know you are praying! You have no idea what peace it brings to know that we are not the only ones who will be lifting our daughter up to The Great Physician on Tuesday. We love and appreciate every one of you! We know you care about our little peanut, we thank you for that!

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Surgery for our little peanut, here we go again.

Pin It I am cutting right to the chase on this post. My sweet Ivy Joy is not feeling well. 

She is puffy again as you can see in the pictures I just snapped. She was so sweet to wait patiently for me to snap these when all she really wanted was to fall asleep in my arms. 

She feels lousy!
The last 5 days Ivy has been experiencing some severe ~bloating~??, in her belly. I don't know what else to call it, or at least I didn't know. But it had me very concerned as her tummy continued to grow bigger and harder and her little belly button even popped out. The swelling began to come back in her legs and feet and face. Not near to the extent that we had in the past, but enough to have me making phone calls.

On Wednesday evening we headed to Phoenix Children's Urgent care. I wanted someone to look at her and tell me her belly was normal. I searched the Internet for hours trying to find something, anything like this and there was NOTHING! Well.... the doctors had not seen anything like it either. Not related to the heart, not on a baby that was otherwise looking so pink and happy and down right adorable... just sayin~
So they called my cardiologist, took some x-rays, tried to draw some blood from each hand, then her foot, then mommy put her foot down and said stop! Ivy's blood just would not flow! 
The x-ray showed a whole lot of fluid, a low liver, and left a lot to be questioned. So we headed home for the night and we spent the next day at the hospital. Ivy was 4 pounds heavier than her last appointment. And it was all fluid! Or mostly fluid anyway. Her belly was as large as the day before, her feet fluffy as can be. We had increased her lasix to 3 times per day but they knew something else was wrong. The concern was that she was having kidney failure. Our cardiologist was very very worried about that. After her echo and her blood work, drawn through ONE poke from the neck by our little angel nurse J.S who we absolutely love, we waited. And when the results came back our doctor was both relieved and sad. Ivy's kidneys are fine! Praise God!!!!!! But we are so very sad to say that she has left heart failure and needs surgery.... next week. 

Ivy's tricuspid valve is leaking so heavy that the blood is pouring out and falling in to her stomach and legs. She is weak, not walking, not able to do much of anything at all because she is in heart failure again. My sweet baby is amazing. The fact that she is eating (a lot), drinking, playing while laying down or sitting up, talking and engaging..... all amazing!! The 13 year old and 18 year old I spoke to at the mended little hearts meeting told me that when they had valve leakage before a valve replacement they could not get out of bed. The moms who's kids went through valve issues when they were younger said they had feeding tubes until they were 5 because they did not have the energy to eat! Yes, she is amazing, yes she has been through a whole lot and yes she will get through this too. We all will. She is such a special, amazing little girl. She is a mystery to the doctors. The way she looks so good, and then you see her lab results, and there is no way to deny that there is a God, and he loves this child and he keeps his promises and he carries her through everything!! Because while some may see her story, in an orphanage until almost 2 years old and all alone for so long, so sick without anyone. But we know, she was never alone, God has carried her, He has loved her, He has protected her, He has surrounded her with the right compassionate hearts and now the right family and the right brothers and sisters standing in the gaps, storming the gates of the heavens with prayer and petition for her!!!! He knew then and He knows now and He knows all!!! I find great peace in that!

So we were able to come home. The nurses were surprised to see her coming home... she is sick. But our sweet. awesome, oh so loved doctor knows Ivy. He knows she does better at home. He knows we wouldn't take an ounce of chance with her health or her life and we would be at that hospital in the blink of an eye if we felt there were any changes with her. So that's where we are.
I should hear from the hospital by tonight about the day and time Ivy will have surgery. They are thinking Tuesday but hoping for Monday. It is all about finding an opening in the O.R. 
We trust God, He knows the day and time and He knew this was coming all along. We have only been home 7 weeks but it has been 7 weeks of bonding and loving and healing. 
Now she is ready for whatever is next. They need to get a look at her lungs before they know exactly what they will be doing to her. 
He pressures are so so high. 
We need to make sure her lungs aren't too damaged from all of the time she waited un-repaired. 
Will you please join me in prayer that this is not the case? 

Thank you! Pin It