Merry Christmas

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A recap of 2013

January ~ 

After a very sudden, but rapid decline in heart function, Ivy was air ambulanced back to Boston Children's. At first they thought her mechanical mitral valve had clotted, after open heart surgery it was discovered to have a piece of loose scar tissue stuck in it as well as clotting.  She would need another open heart surgery to replace her mechanical mitral valve with a porcine valve. Poor sweet girl was so sick and so scared. And in true Ivy fashion, she pulled through. God was not done with His miracle yet!

February~

We finally said goodbye to Boston Children's for the last time and headed home just in time to celebrate our sons 14th Birthday.

March~

Ivy made huge strides in her health and seemed to be doing better than ever. We celebrated daddy's birthday and did lots of home physical therapy. Ivy was doing lots of hand held walking, but none on her own yet.

April~ 

Our youngest big girl turned 17! Our oldest big girl and son in law moved back to Arizona. Ivy started showing signs of heart troubles again and was hospitalized. She was put on Milrinone, and 24/7 oxygen, had a heart cath, and it was determined that it was time to list her for heart transplant. 

May~ 

Ivy got out of the hospital just in time to celebrate her 3rd Birthday! We had a wonderful celebration with very special guests traveling in from New York and Missouri. 48 hours later, we traveled to Lucile Packard Children's for her transplant work up. They put her on a strong regimen for her pulmonary hypertension and she continued 24/7 oxygen as a therapy for the hypertension as well. 

June~ 

School was out and we spent the month enjoying life as a family at home sweet home. Ivy started walking independently and before we knew it, we could hardly remember all the days of her being too weak to do so before! 

July~ 

I loaded up 1 of my big girls, the 2 little girls and the oxygen tank and ventured out to the East Coast for a lovely vacation with a dear friend and her sweet family. It was priceless! Just what we needed to feel normal for a while.

August~ 

We headed back to Lucile Packard Children's in California for Ivy's heart Cath the final step needed to list her for a heart transplant provided her pulmonary hypertension was lowered enough to be considered a candidate. First stop was our cousin Cindy's wedding. The girls were flower girls and it was a wonderful time!

Next stop, Lucile Packard Children's hospital. We met with the transplant team had lots of tests and then the following morning she went in for her heart cath. It was determined, based on the cath results, that Ivy's pulmonary Hypertension was miraculously near normal now! Her heart function was showing very promising signs of recovery and her overall function was better than we had ever seen it! They took her off of oxygen and gave us the thumbs up to go home and continue healing. Her heart was finally bouncing back, squeezing a little better, responding to all of the medications that she takes! Their words were like a dream.... AT THIS TIME, WE BELEIVE IVY DOES NOT NEED A NEW HEART! THERE IS HOPE FOR HER OWN HEART AND WE REALLY CAN'T EXPLAIN IT! ~ But we can :)~

Rejoicing!! We were indeed rejoicing! And then we discovered that we were discharged not knowing that somewhere in the blood thinning process and her heart catheterization, Ivy had developed a severe brain bleed. After a CT scan revealed the massive bleed and neuro saw her quickly declining she was taken in for an emergency craniotomy. Ivy had so much blood collected that her brain had shifted to the left side. It was possibly the scariest thing I have ever experienced as I felt equipped to handle all the uncertainties of her heart, but knew nothing about what we were now dealing with. I felt so helpless at that moment and wondered how much more this precious child would be handed. How much more this mamas heart and soul could handle.

And God, well, He reminded me that no day is to be taken for granted, not one! No job is too big for Him. He drew me right back to the foot of the cross and reminded me that none of this life is mine or hers and to embrace every gift, even the ones that came in what seemed like hopelessly dreadful packaging!

In pure Ivy fashion, her recovery was nothing shy of miraculous, she was blowing bubbles on her own within an hour of waking and being extubated. She continued to show the doctors and nurses what a fighter she is and while this bleed left me certain I was ready for Jesus to come back and free us from all this suffering, she had other plans. She came back to us stronger and mightier than she ever has. She left her mark at Lucile Packard and we left for home before the end of the month.

September~ 
Lexi started her last year of pre school and was so happy to do so! 

Lots and lots of appointments filled the month! Not only did we have all of the heart follow ups but now we added neurology to the mix! Staples came out, recovery continued, and Ivy rocked every day of it!

October~ 
It was obvious to everyone that Ivy was like a different child now. She got colds that left her weak, but she didn't end up in the hospital. She was growing, thriving and clearly doing amazing! Both girls had lots of fun dressing up for Halloween and while last year Ivy lay in a hospital bed on Halloween, this year she walked far more than she sat in her stroller! 

November~ 
Monumental month..... Ivy Joy started Pre School! She was cleared to be a normal little girl! We took it slow and still are very very careful, but for the most part she is just one of the Little's! She loves school, loves her teacher, and tells us so all day long.  On the 11th we celebrated 4 years home with our precious Lexi Jade! 

December~ 
Lexi Jade turned 5!! Both girls had adorable Christmas performances with pre school. Lexi had her dance recital and was absolutely precious! And to close the year out... Ivy Joy's BNP (heart failure number) is down to 195!!!! The lowest it has ever been... EVER! 

Never doubt, never give up, never underestimate the power of the Lord our God! 

                   From our family to yours,

                        Merry Christmas! 

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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

Cath update

Pin It Our Little Ivy was in the Cath Lab by 7:15 this morning. She was given her happy juice in the holding area at 7am and it nocked her out cold. I suited up and carried her to the cath lab. They let me lay her on the operating table and stay with her until they were ready to begin. She never budged.

I took her beloved blanket straight to the washing machine here in the hospital (something I do every time she has surgery so that it is fresh and clean when she comes out). And the wait began. It is now almost after 11am and the wait continues. They have called me twice. Once to tell me the dreaded news that her right coronary artery is in bad shape and that they see some very severe narrowing/occlusion in one area. They were thinking it was possible that there was a surgical clip left behind but could not tell on film. They contacted the specialty coronary team here and they were headed here to give their expert advice on how to proceed. About 15 minutes later they called again to say that there was indeed a positive read when they did the stress test on her (meaning the narrowed area narrowed even further under stress) so they decided to try and balloon that area of the right coronary artery. She has had some pretty scary times in the cath lab when they have tried to help that right coronary in the past. Praying oh so hard that today will not be a day like the others. Oh Lord please continue to protect my baby girl. You made her strong, please let her use her fierce strength once again today!
I do not have any other results as to her heart function, her PH or anything else as of now. The doctor will come out to speak with me when they are finished and then we will make this our home until our little Empress is strong enough to get out of here. This morning when we arrived and she saw the holding area she looked at me with her pouted lip and said, 
am I gonna be scared? 
I told her no one would be scary and nothing would hurt. She would be asleep. 
She said will they hurt me when I asleep? 
Oh my heart!! She immediately read my emotion and she hugged me so tight and said 
don't worry mommy, the doctors will make my heart better in no time at all. And that was it! Flood of tears! She is so special!!!! An absolute HERO! Any way... The next thing she said was quick, run, lets get out of here!! Hurry mommy, run! She is such a little character!
And her last words to me before she fell asleep in my arms with the happy juice that nocked her out
 ....brace yourself now.... it's a tear jerker (NOT)
Where's my cheetos!!! I want my cheetos!
Oh well, I know she loves me to the moon and back :) And oh how we love her!!!!!
I will be back tomorrow to share. Today we are going to snuggle and heal and do whatever it takes to GET OUT OF HERE! Cheetos first though! Love you all.
Thank you for being our prayer warriors and friends! 


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Change is good

Pin It Life is so much different this week! Ivy Joy is 100% mobile for the first time in her life! She just walks all over the house, gets her snacks, climbs in her big girl chair (will have nothing to do with the highchair now), climbs in the learning tower, walks to her potty and goes pee pee, goes swimming with us and doesn't scream the entire time, will wear her water wings and swim from step to step in our hot tub (even though it is 100+ every day, Ivy and I are wimps and like our pool water to be heated!! We aren't heating the big pool, the big kids would not be happy about that, but the hot tub is big enough to swim in and is heated up for us wimpy ones who like the water to feel like a bath!). She doesn't ask to go bye bye a million times a day or to eat every 2 seconds because she is just having fun playing and being a little girl! Lexi is so proud of her and tells her so, constantly. 
These little girls... I tell you.... ARE SO SWEET!!!
Me..... well, I'm a little taken aback! I want to put bubble wrap on her head... and pillows all over the tables, cabinets  and doors. She scares me to death! When you are a tiny tot on blood thinner,  just the tiniest bump leaves you with a shiner and a trip to the ER. I want to let her go, and I am, but I will be found 2 inches behind her, running, ready to break any falls!!! We have waited SO long to get to this point! It is so exciting! Just would be lots more fun if she did not have to be on anti coagulants!  Regardless, We are having the time of our lives just being a regular family! Doing regular things!! Even have some trips planned! We can't take Ivy to pre school, sunday school, gymboree, public pools, any group indoor play classes. BUT...... We can travel, we can swim at home, and best of all..... SHE CAN WALK!!!!! 

Our Real Life Super Hero!

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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

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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Quiet, shhh

Pin It Just as I prayed for!!! 
It has been a quiet and completely uneventful day here in Room 9!! No activity whatsoever! So quiet and peaceful that I actually took a 1.5 hour power nap this afternoon, ordered by my fabulous nurses!!! 
Ivy's little heart is doing sensational. She is showing the doctors her determination and strong will to live once again! Both her doctors and her nurses say that there is not one thing they could expect to be better at this point! Woo hoo baby girl!!
So Im keeping it short today. Just wanted you all to know how ~our~ girl is doing. This village of prayer warriors really has become our special little big family!

Ivy will remain paralyzed and sedated until her chest gets closed. Dr Baird will not be at the hospital tomorrow and he wants to be the one to close it so that will happen first thing Tuesday morning. After that, it will be just a few more days of slowly waking her up and as soon as she is awake enough to breath, we will get that ventilator out and start our road to recovery!! I can hardly wait!!!!!

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Staph?

Pin It Well we have confirmation that Little miss has a Respiratory Staph Infection. Something not uncommon when putting a already sick child on the ventilator. She is weaned off her sedation meds now but still asleep. As soon as she wakes up they will remove the ventilator. And the fun will begin :) Surgery is on the books for Wednesday. We all know that that can still change but as for now, that is the plan.

       “Though she be but little, she is fierce!”

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Wrapping up the week

Pin It Is it really Friday? Seems like the week just all piled in to one long day. My mom leaves tomorrow and I feel like she just got here yesterday. I was so sad that Ivy got sick right before she came, I was looking forward to her finally getting to see Ivy eating and talking and charming everyone around her. Every time she has been with her she has been very weak and sick. Well, as always, God knew my mom needed to be here this week. She has been such a huge support as we weed through our next steps with little miss miracle and she has taken supreme care of our family so that this mama could spend the week doing nothing but love on her babies!!! What a huge blessing she is. Mom, I love you with all of my heart and I would not be the mom I am today if not for you!

As of this morning Ivy was still not doing great however by this evening she was smiling and talking and eating a little more and certainly feeling a whole lot more like herself. Over this past week she has spent most of her time sleeping the day away. I kept her with us where ever we were so she could hear us and feels us. So very grateful that she is showing signs of getting over her cold, little by little. Her cough is terrible and the sad faces she makes due to the pain it causes is enough to leave us both crying.

 She sleeps and she sleeps! It has been very scary at times!

 A very sweet friend of ours sent over these prayer buckets for the girls/family. Such a precious little gift!

 Our (big) little girl has been so helpful with everything Ivy. But the girls are especially cute at bed time. Always making sure the other is nearby. Stories are always on Lexi's bed, followed by tickles, prayers and lights out. Lexi makes sure Ivy gets the same amount of everything even if Ivy would rather go to sleep :)
She is already asleep in her bed when I took these pictures. Sweet baby loves her sleep :(

 Longing for the day that her life does not revolve around medications and Echo's and Cardiology visit. I think the longest she has ever gone between Echo's is 3 weeks. That seems crazy to me. I am certain it seems even crazier to Ivy!

 Miss Lexi started school this week! What a blessing for her to have a 3 hour break from all of the nursing going on at the home. Time to be with friends, spread her own wings and not worry about her baby sis or helping mommy.

 Ivy has facial swelling again. Her limbs are still normal. 

Swollen or not, I think she looks like a little angel.

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