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Thursday, July 26, 2012

Ivy's cardiology appointment~ Let go and let God!

Pin It It was today and it was GOOD!
Ivy woke up last Wednesday morning a different child than the one the day before. She was doing so fantastic on her new dose of carvedilol and she was so full of life! Then Wednesday morning she woke up sounding like she was aspirating. She had a frothy sound to her breathing and she was very unhappy. Her face was a little puffy and she was not interested in food one bit! (very much NOT her norm)
We watched her closely and this behavior continued throughout the day and the next. By Thursday evening I was very concerned and called her doctor. We spoke on the phone about all her symptoms and he felt comfortable with just having me keep a close watch over her. He said it could be a virus that is just pushing her over the edge due to her hearts state right now, or it could just be side effects to heart failure. Friday we had pictures done in the morning. She was coughing pretty much the whole night but sounded a little less frothy in the morning and she was not as fussy. After pictures she continued to refuse food and she slept the rest of the day. She slept most of the day Saturday as well. She would not eat still and she was getting more and more fussy when awake. I tried to reach the doctor but there was a problem with the phones and I kept getting disconnected. On Sunday morning she woke up at about 9am. She was so upset, nothing and no one could make her happy and she was putting her hand on her chest and saying owie. I tried to call the doctor again but there was still a problem with the lines and I could not get through. Bryan and I knew that we were not going to be at peace until someone told us she was fine. It was so scary to hear her breathing. It was very loud and frothy sounding and she would cry when she coughed. She coughed at least every 5 minutes at this point. So at noon we scooped her up and headed to the ER at Phoenix Childrens. They had no clue what to do with her. They agreed her lungs sounded wet and she looked swollen. They took blood, did the 8 inch Qtip swabs up the nose test. They started an IV. Gave her a high dose of Lasix. Her immediate tests came back negative for infectious disease and viruses. They had us feed her.... I guess when they saw how bony she is they wanted us to prove we feed her??? Anyway, we ordered her food and most of it she refused. Not the daily norm for her but the norm for the past week indeed.
Today when we arrived at the hospital, we were informed that Ivy did indeed test positive for influenza. Her doctor was very upset that we could not get through to him over the weekend. Upset that no one from Ivy's team was there for her when she was at the hospital Sunday. He felt terrible. Upset that the ER never informed them that Ivy tested positive to influenza. These results came in a few days after we were there and we did not get a call, nor did he. Doc said that Influenza would put any child or adult in Ivy's condition in the hospital and on the ventilator. He assured me that she is no ordinary child and it was unexplainable how she shook it all on her own and without hospitalization. I showed him all the gray hairs she gave me over the past week!! Ivy now has her own team of nurses following her too. We have everyones cell phone number and there will never be a need to go to the ER again. They are monitoring her a little more closely due to the state of her heart.

Today, she was coughing less and happy all day! She is eating a little more but by no means are we back to where we were prior to getting sick. She is slowly, throughout just today, getting more energy. She had not moved her body, not even a butt scoot on the floor, since Tuesday. Tonight she was crawling, creeping and so full of life again!

So the great news is that her ECHO revealed that her tricuspid valve leakage has gone down a good amount. Her ejection ratio is now 55. That is amazing for her! This all means that the meds are working and her heart is happy. August 16th we go back for another ECHO. They will then start her on the sildenafil and we should see the pulmonary hypertension go down some. The plan.... Use these medications while Ivy grows and gets stronger for the next 6 months to a year. They upped her to her full dose of carvedilol today and they are adding yet another medication on Monday.

Update: When I put Ivy to bed tonight she was still asking to eat. She had just finished a whole baked potato with 4 spoons of butter in it, a big bowl of noodles and 6 hershey kisses! Yes she is a carboholic!!
She was giggling and singing and playing with the iPad. She was herself!! It has been a very hard 8 days I must say!! But the reward of seeing her so happy tonight makes me forget the whole week!!!!

And top it all off, let me just tell you how good God is when you listen to Him and you step out of your comfort zone!
My son Brady has severe asthma. It is often scary and always comes out of nowhere. He takes advair twice a day. With insurance it costs me 125 dollars a pack. His albueterol is 60 dollars for a single inhaler.
When we started Lexi in speech, since she did not qualify through early intervention due to no other delays, it cost me 80 dollars per session. She went once a week! Our insurance would not cover any of it! ZERO! Can you say Broke?
When God said Ivy Joy was our baby and to hurry and get her, it was a HUGE leap of faith. We have the same insurance as we always have. We were not sure what they were going to cover or not cover. But God said she is waiting for you and I knew the moment I saw her she was my daughter! And so we trusted Him.
Upon landing in the U.S Ivy's cardiac care began. Echo's, Cath's. oxygen, hospital stays, it was one thing after the other from day 1. We had to meet our very large deductible which was not easy to swallow considering we just completed an international adoption and that in itself was tough. But let me tell you what God is doing. Ivy's most expensive medication so far is 24.00 a month. ??? Remember what I pay for Brady's? And her surgeries, one month hospital stay, all these appointments... all covered!!!
And yesterday I got a call from the hospital saying that Ivy qualifies for a special cardiac rehabilitative physical therapy  and it is covered 100%!!!
I do not look forward to busting out that super high deductible  again this January, nor do I know yet where it is coming from. Those Echo's eat up that deductible quite fast. But God said go and we did. God said trust me and we did. God said I will be here with you the whole way and He is!! So come January, He will still be here and we will trust Him still!!!
As For today, I'm Just giving thanks!

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

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Monday, July 23, 2012

sneak peek

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Saturday, July 21, 2012

Sick and Tired

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                               This little peanut has been sick for 4 days
                              And oh so very tired too!

And she is the mightiest little trooper on the planet I might add!
It is so hard to keep calm when you have a child with a heart condition with a fever, cough, and very wet sounding lungs. Because there is  the cough associated with a cold, and there is the heart related cough, often associated with heart failure. 
Ivy's cough has progressed from just at night to all the time. It sounds very juicy, not the kind that has mucous break up when you listen and not dry either. She is very sleepy. On day 2 she slept 23 of the 24 hours of the day. Yesterday she slept very little, but that is likely because she couldn't go even 2 minutes without coughing. Her chest must hurt so much. She looks at us like...Why aren't you doing anything about this? She isn't eating much, just drinking lots of water.
I have spoken on the phone with her cardiologist and we are watching her very closely. Here is a description of what is going on.
Ivy has heart failure, you know that. Heart failure means that the hearts pumping ability just can not do a good a job of pumping blood as it needs to. And one common result is lung congestion.
Since coughing is the body's way of clearing the airway and bronchial passages, it makes sense that it's a prominent symptom of heart failure. I believe the older term for the condition is "congestive heart failure". I can not explain the on an off fever, however it did break and has NOT made another appearance.

So I have propped her mattress up on one side to keep her somewhat upright. She was held all day yesterday. Her big sister Cassidy is her rescuer.. When she see's medicine coming she looks for Cassidy, calls for her, and cuddles deep in her arms. She has a very special bond with her sister and she is perfectly content being held for hours by her!! I spent much of the night on the couch next to her room so I could be an arms reach from her and just listen more closely for her. She might not feel good but she sure will feel loved through this! And we will do our best to keep her comfortable until we see our doctor for her next ECHO, Xray, EKG, and blood work on Thursday. I can not imagine her making it all the way to Thursday to be seen. We are in regular contact with her cardiologist and come Monday morning we will be walking through his door! And if she gets any worse, we will take her in the middle of the night if we have to. But we pray so fervently that that is not God's plan. 

Yesterday, sick as can be, we had pictures taken of the littles. I planned this a few weeks ago when she was feeling awesome. I knew that I needed to take advantage of this time she was finally feeling better and get some pictures done. Pre surgery she was hooked to oxygen 24/7 and post surgery she has been so on and off sick that pictures just never happened. 
When Brooke (the photographer) said she could not fit us in until the 20th I was a little weak in my faith (Ivy has yet to have ever made it 3 weeks without taking a few steps back) and secretly wished she would call me and change it to a sooner date. Just in case she had another set back. Yes I am a sinner saved by God's grace. I have fear and I have worry. But I'm so thankful that He loves me just the same! And oh how I love Him. And all He has done for me, my family, this precious little Angle Ivy. But anyway... there was no call from Brooke so the appointment stayed Friday the 20th. And sure enough, she took her 3 steps back on Wednesday. 
Friday morning she woke with no fever and she looked less puffy in her face. The cough was pretty bad. I decided to seize the moment, knowing Brooke would happily understand that Ivy would not be up for many smiles or clothing changes and that it just may be Lexi she was photographing alone. Well Ivy was a trooper. Out in the 107 heat at 9 am, both girls dripping in sweat. (All of us dripping in sweat!) WE GOT SOME CUTE SHOTS!!!!!
Brooke was amazing with the girls and the girls were Stinkin Cute!!! She sent me one sneak peak,... the rest I will get in a few weeks. I can't wait!! And even though peanut Ivy was sick and not smiling, and both were miserably HOT....It is where we are right now. All real, all a reminder of how life is today. And there will be lots of photo shoots in the future with a healthy, smiling, running and jumping little Ivy! For today, we will take it as it is and remember these days, these moments. Some day we will look back and hardly remember the day Ivy was sick. I can not wait for that day. Right now it just sounds sooooo good!

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

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Sunday, July 15, 2012

Playing in the rain

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A rare glimpse at the Bigs!
Approved by them first :)
 It's been a long time since we have had a storm like this!
 And the bigs were all about getting outside and playing in the rain!

 This girl was the first to get out there and the last to come in. 

                     The Littles and the Daddy, Thinking                                                 
                         ~Our Bigs Are ~Strange!~
                              Look at that awesome troll hair!
                                                      Getting fancy!!!

                                                  Brother Joining in :)

Later that night we discovered our basement flooded during the storm! We went to dinner and then church and finally down stairs. A surprise squish when I stepped on the carpet... 
So much for boring~ I guess I should not have  said that in my last post, oops! 
Have a blessed week! Pin It

Thursday, July 12, 2012

Checking in

Pin It Not a whole lot going on. This is probably the most boring hot summer of my life but thats where we are right now so thats ok. Soooo much more to be thanking God for than I could ever have asked for!
And I would sure rather spend it bored and hot than in a cool hospital..... ya you get my point. Ivy has had a most fantastic week! She continues to adjust beautifully to this new dose of medication. She is happy as can be and cruising around the house a little more each day. She has enough energy to climb 1/3 of our stairs now. When we got home from China she could climb the entire flight of stairs and her oxygen saturation was in the 50's and 60's at that time. She would just push herself. So you can see that the coronary artery being blocked is a huge life sucker for our sweet tiny princess and 1/3 of the stairs is  huge for her right now. 

I can't wait to see what the final dose of carvedilol and adding the sildenafil will do for her! My prayer is that it allows her to get up and walk. 

To be a 2 year old! 

To chase a ball and dance along side her sister! 

It is way too hot to take pictures these days! But I just had to try!!

Lexi didn't seem to mind the heat.

Ivy could not understand why on earth anyone would sit her out in this heat?

 Saying poop over and over and eeww over and over as she points to the bird poop on the chair...

 Lexi Jade is getting to be such a big girl! She just turned 3 1/2..... wow!!!! We register for pre school tomorrow! 

 Ivy is observing Lexi here and she just has this look, like, sis do you not realize that we are melting out here??? 
 She is so funny, she makes a little fan with her hand and says HOT HOT HOT!
Have a beautiful grateful week!!! We will too!

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Sunday, July 8, 2012

Ivy and Myah Meet Again

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These 2 little girls were born in the same province.
Both abandoned and raised in the same orphanage.
 Ivy and Myah were room mates in Hangzhou Social Welfare Institute. Ivy was listed as Myahs best friend in her baby book.
 The two girls were reunited this week when Myah's family was here in Az to visit her grandparents.
 Myah came home last October, she was around 14 months. And 4 months later, Ivy came home.
 Myah is 3 months younger than Ivy, she will be 2 next month.
 We love that these 2 will have one thing in common forever and hope that they will see lots of each other through the years.
 Don't you just love Precious Myahs chunky little arms!
 When I look at these pictures I am given confirmation that calling Ivy Tiny is not an understatement! 
 It was terribly hot outside and the babies were hungry and wondering why on earth we were sitting outside when the food and AC were inside!

Back at home it was time for medicine. And after medicine Ivy gets the hershey kiss bowl so Myah got to join in! It was a sweet time :)
 She impressed them with the way she could pop the whole kiss in her mouth never drooling a drop of chocolate!
 Later that day Ivy and I headed to the hospital for her scheduled visit. Her Echo showed that the tricuspid valve leakage and pulmonary hypertension are in full force. They doubled her carvedilol and left everything else the same. In 3 weeks, She will have another ECHO, more blood work, and they will do the last increase of her carvedilol. Once she adjusts to that, she will begin taking Sildenafil too. 
She continues to be diagnosed with right side heart failure. 
She seems to be adjusting well to her new dosage of medication. She had more energy today than she has had in a while and she has been extremely happy! She continues to blow us away with new words every day. The best yet was on Friday when she said ~I You You Mama~ as I lay her down in her crib for her nap. You You is ~love you~ and it made all the hurt I was feeling from the day before just go away. Thursdays doctor appointment was hard. Holding her for her ECHO as she screamed for an hour straight just about did me in. She was so very upset and I could just tell she was done. She can't stand the gel getting pushed around on her and the fact that she is so skin and bones, she is just uncomfortable the entire Echo. They have so much to look for and hers are so often and take sooooo long! Poor baby was covered in tears and could barely catch her breath. 
But, in her true Ivy spirit, when her doctor walks in the door a while later she is just all full of flirty smiles for him! She is different with him than any other doctor or nurse. It just makes me smile! And when all was said and done she had all her fans (nurses and techs) blowing bubbles for her and doing whatever they could for her because she is just so loved! She's a special girl. It's nothing we did or nothing we do, it is just her sweet spirit and the sparkle in her eyes. You can't meet her and not fall in love. 
We love you baby girl! 
And we will keep on going to the moon and back until you are healed!

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Saturday, July 7, 2012

More 4th

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 Just one of the littles would humor me with some outdoor pictures.......
We had a very quiet and uneventful 4th. The girls did not even come close to making it for fireworks. I will post tomorrow the details of Ivy's echo she had on Thursday as well as a visit from her best friend from Hangzhou SWI!! 

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Wednesday, July 4, 2012

Happy 4th of July

Pin It We are thrilled to be celebrating with one more Little US Citizen this year!!

We spent a few days up at our very gracious friends cabin in Happy Jack. 

Our 13 year old, Brady was just a mess with his asthma, giving his mom and dad quite the scare at night!

And Ivy Joy... Oh my sweet girl. She was a bit of a mess too. She was throwing up her meds the first day (took 4 complete tries to keep it down before bed) and she wasn't really eating. She slept a lot and basically cried every time I put her down. Ya, I know, reading up to here, your probably jealous of this little vacation time already!!!

But... The cabin has the most amazing porch and amazing view and the weather was PERFECT!! Chilly in the morning and evening and just right during the day. The deer were out and about looking for food each morning as we sipped our coffee and enjoyed quiet time before the littles woke up. And just being away from the busy day to day was a treat. Even if it was StReSsFuL~

I wasn't sure if the elevation was causing Ivy's discomfort or if she had a little bug or she was stressed out by the fact that she didn't really know where she was and what was going to happen next??? After all, the only place she has ever traveled to is the hospital! 

After getting home I think it is a very big possibility that she was under stress and it was hard on her little heart. Because from the minute we walked in the door back home, she has been happy and eating like a little piggy, as active as her little heart will allow and just herself again!!

                                                               Lexi Jade 
                              Her name should really be happiness! 
     Because she is always happy and she makes           everyone around her feel ~ happy!!

 And while the majority of my posts lately have been focused on Precious Ivy and her healing heart
 I feel it's important to bring the spotlight on to this little sweetheart today! She is such a gift~
 She has had her world shaken this past 4 months!
 And yet she remains just as happy as can be.

She was the center of the universe for 2 full years and then I left for China and came home with a very sick little baby. I spent more time away while Ivy was in the hospital, there are constant doctors appointments and constant attention on Ivy and her healing and yet Lexi just keeps on smiling! She has graciously made room for Ivy in her princess chair and gladly shares the spotlight with her new sister. 
 When she needs a little alone time she usually tells me that Ivy needs a nap! But when she hears or sees her waking up on the monitor she is jumping up and down saying Ibee's awake Ibee's awake and she is flying down those stairs to go get her!!

I do not know why I purchase clothing for this child! She lives in dance clothes and bathing suits and I'm not talking while she is at dance and in the pool... I'm saying if we are home she is in a dance outfit or a bathing suit. With a lot of chasing her around the house, loud giggles coming from all her hiding places, I can get her in clothes for as long as we are out of the house. But the second we are in the door...... clothes off and dance wear on!! 
And now Ivy wants to be just like her so she is constantly pulling on her clothes and saying off so that we will put a bathing suit on her! So funny but yet... not!! 

 She loves her sassy face! As soon as I get out the camera she gets those lips ready!!!
 She knows darn well that she is cute cute cute!
And when she is feeling good, she can bring on the Ham pretty quick!

 Always ready to eat whatever her big brother is snacking on!
                 Ivy wasn't thrilled about making cookies?

 Asking me why Ibee is fussing about making cookies? We are in the Why stage and honestly, I LOVE it!!! 

 She takes her cookie decorating very serious!

My big girls are in CA at National and we are all missing them so much!!! It was so sad sending them off for this big competition without any family but seeing how Ivy handled didn't handle our short time in the mountains, it was the right decision to stay home this year. Next year will be better!!!

 Decked out in her D.R attire, rooting for her sisters while they are away!!!

Wishing all of you a Happy Independance Day Pin It
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