Busy Tuesday

Today, we awoke to a snowy, icy clinic day. The kids thought it was really cool to see how low the temperature could go as we ventured out at 5:30 this morning. The coldest spot was minus 7 degrees. I prayed as we set out that the Lord would guide us safely to Denver, and we really made pretty good time until we reached Castle Rock. Everything pretty much came to a stand still, and it took us an hour and a half to reach Children's Hospital from south Denver. Our total travel time to Children's was 3 hours.

At 7:45, I realized that there was no way we were going to make it before her Neoral (cyclosporine) was due at 8am. This is one of those meds where you have a 5 minute window to dose. This is her life saving anti-rejection medication. I set alarms on my cell phone so that I give her this medication literally not a minute early or late. I paged transplant and asked them what they wanted me to do, because her blood could not be drawn after I gave her the Neoral. Transplant told me to not give her the medication and just to make it to the hospital as soon as possible.

The kids and I arrived running full speed at the lab at 8:21am. Our wonderful lab people were expecting us and drew her labs right away. As soon as the last drop of blood was collected, I squirted her meds in her mouth without delay. It was one of the most nerve-racking mornings I've had in a long time. All day, I've had to push back thoughts of her rejecting her heart.

Dr. Pietra said that she looked a little dehydrated on her echo. Her heart rate has also been a little high lately. I've noticed that she also looks like she is getting little pea size bruises on her back and limbs. Jilayne noticed that they are tightly grouped little areas of petichiae from her CMV. Her cyclosporine levels also came back pretty high, so she adjusted her Neoral down a little.

The good news is that we were able to stop her Verapamil today. Her and I will no longer need to get up at 3am for her middle of the night dose. Yeah! More sleep! She will need to go back to clinic next week to see how she is doing off of it. My job is to try to hydrate her as best as I can, and give her yogurt for the loose stools. If she doesn't seem to be improving, we will most likely need to draw another CMV PCR. Our hope was that she would be able to fight the CMV without antivirals, but if it continues to get worse, we may have to intervene.

Ethan and Emily were troopers today. I was really proud of how well they did, because it was a long day. I think they were secretly on their best behavior, because I only brought reading for them to do in the car, rather than a full school day. Needless to say, AnnaSophia is fussy, the kids are tired and I'm really exhausted. We all need some rest.

Tonight I plan to rest in the Lord. Every time we are handed a setback, I can't help but having negative, scary thoughts go through my mind. I start to wonder how much time we are going to have with our little AnnaSophia. Life is unpredictable and precious, and I try hard not to dwell on the negative. The one thing that I cling to is that God is good and He is sovereign.

I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.
I will be filled with joy because of you.
I will sing praises to your name, O Most High.

Psalm 9:1-2

Mary

Even more AnnaSophia -- BONUS!

Here are a couple more:

Squirt the dog is my best friend



I'm funny, huh?

More AnnaSophia!

Here are a couple of recent photos of AnnaSophia:


Dad! When the heck are you coming home?


I am a chunky girl despite going through so much!

Prayers for Sam

This is Samuel Whitfield and AnnaSophia playing with the box of animals together. Sam just loves AnnaSophia. She had a coughing episode while they were playing, and Sam would look at her and ask "You ok Fia?" Sam is just the cutest bundle of a two year old I ever saw. He is also the youngest son of my dear friend Torry.

The day before AnnaSophia's birthday celebration, Sam was taken to the hospital for a long, petite mal seizure. It was the scariest thing Torry and her husband Todd have been through. Todd was assisting Sam's breathing and attending to him until the ambulance arrived. He was still seizing in the ambulance while in transit to the hospital. This was the first time anything like this has happened with little Sam.

We just recently received news that his EEG was abnormal, and he is having lots of small seizures. While listening to his heart, the doctor also discovered that he is having Premature Ventricular Contractions (PVC'S) every 10 beats. Sam is now in the care of AnnaSophia's wonderful Colorado Springs Cardiologist, Dr. Runciman. He will also be seen by a Neurologist soon.

We humbly ask for prayer for little Sam and his family. Sam is at risk of having a large seizure next. We pray that the Lord will guard his life and protect his brain, and prevent any big seizures. We pray that the Lord will give His angels charge over Sam. We pray for comfort for Torry, Todd and their other children, Tanner, Evy and Addison, as witnessing Sam's seizure was scary for all of them. We pray for wisdom for the doctors and everyone involved in Sam's care that they would know exactly how to care for him. We pray this all in the name of our Lord and Savior, Jesus Christ.

Mary

Coming Full Circle

After a full week of illness, our family is finally recovering. I feel like I am behind in everything now. Is it possible to be behind on your own blog? I know that I certainly feel like I am. I am also starting to get caught up on sleep, something that escapes me when the troops are sick.

AnnaSophia fought off croup like a champ, and is doing better. She spent four days sleeping in her swing (to keep her elevated) next to a humidifier. I think the fact that she is still nursing has also helped her immune system. Unfortunately, her CMV levels are increasing again. Her last PCR was over 2000. That's not as impressive as the 171,000 she was at before. The doctor's plan is to watch her carefully and hope that her immune system will be able to fight this on it's own, rather than starting her on antivirals again. Next week we go back to Children's for clinic. Her echocardiograms will be watched closely for any signs of rejection.

AnnaSophia's birthday celebration was lots of fun, and it was wonderful seeing so many of our dear friends. One friend reminded me that the day of her celebration, January 11, was the exact date that we had met, one year ago. Kimberly reminded me of the significance of the date. In all of the hoopla, I had forgotten that one year ago, AnnaSophia was undergoing her first surgery to correct her heart defects.

Kimberly and her family introduced themselves to Steve and I and had supported and prayed with us during our January 2008 stay at Children's Hospital. Their son Jonathan was at Children's due to complications from his cardiac surgery. Steve and I were scared to death as our little 11 day old infant underwent extensive repairs to her messed up little heart. Her heart was so swollen from the surgery that the doctors had to leave her chest open for two days after the surgery.

Nothing prepared Steve and I for what we were to see after she came out of surgery. She had lots of tubes coming out of her body, and she was on a ventilator. She had a thin piece of plastic covering the gaping hole in her chest, and you could see the rapid beating of her heart beneath it. She had ice packs behind her neck in an attempt to keep her body temperature lower in order to protect her brain. She had junctional ectopic tachycardia (JET) in which her heart rate was running 200-300 beats per minute. Praise God that she came through it better than we had hoped for. She even left the hospital one week earlier than we expected. I would never want to go back to January 11, 2008, but our experiences this past year have definitely changed us.

Steve and I have been forever changed by our journey of faith in 2008. Our journey has not stopped, but continues each and every day. We have learned to walk by faith and enjoy each day for the gift that it is. Having a child changes you forever. For us, having AnnaSophia in our family has definitely changed all of us in ways that we never would have imagined. One thing that we are sure of is that God is present in our lives and walks with us every step of the way, if we let Him.

Mary

Prayers needed, and Jan. 11, 2009 -- a day worth remembering

Before I get to AnnaSophia's celebration on Sunday, I want to humbly ask for your prayers for AnnaSophia's health. She has a nasty case of croup and even ran a fever off and on last night.

We are obviously hoping and praying for a speedy recovery as none of this is good for her heart, and she risks having to be put on steroids if her situation worsens. Mary and Ethan are sick as well. Please pray that AnnaSophia gets better quickly and that the rest of the family heals.

Back to our regularly-scheduled programming...

We wanted to take a moment to thank the Falcon community and all of the wonderful people who joined us for AnnaSophia's 1st Birthday celebration. It meant so much to us to see so many special friends and family members take time out of their Sunday to celebrate with us!

We also want to thank Pastor Pat, his wife Joyce, Dave, Mary and the entire leadership team at Grace Community Church for opening the church to us. A lot of work was involved in making this happen and we are so appreciative. Also, thanks to my mom and dad for helping with all of the pre- and post-event stuff!

Here are a few pictures, including a collage of photos my father-in-law put together -- THANKS! We got an opportunity to offer a bit of our testimony, and thank the Hibbert family for their sacrifice, to recognize Mason and to give a plug for organ donation.

Blessings,
Steve and Mary

A Special Invitation

Dear Family, Friends and Prayer Warriors,

We are having a birthday/life celebration for AnnaSophia on January 11th, 2009, and you are all invited. This year has been a tough one, filled with trials and blessings. We are so blessed that we have been able to celebrate AnnaSophia's first birthday with her here with us. This is just a way for us all to rejoice over the Lord's miracles.

Please join us at Grace Community Church in Falcon on January 11th at 12 noon. We ask that if you are able, please bring a dish to share in lieu of gifts. Our gift is that AnnaSophia is here with us. We would love for those of you who feel comfortable, to share with us how AnnaSophia has touched your life in this past year.

Please RSVP to Steve and I at smeea5@yahoo.com to let us know if you can make it and need directions. Also, because AnnaSophia is immune suppressed, we ask that everyone who comes is well and doesn't have even minor symptoms, so that we can keep our little angel well.

God's Blessings,

Steve and Mary

Happy New Year!

Happy New Year to everyone! Wow, 2008 was quite a year. We are praying that 2009 is a quieter year without quite so much "excitement". God is good, and He is a God of Promise. We learned a whole lot in 2008, and now we are starting a new year with that knowledge.

Things that I learned in 2008:

- I learned how to rely on the Lord whole-heartedly

- I learned to walk by faith

- I learned how precious life is and how to treasure every moment with loved ones

- I learned a lot about the heart

- I learned how to pronounce fancy medical words and what they mean

- I learned how to manage many pieces of medical equipment and how to read various monitors

- I learned what it means to experience the joy of the Lord through trials

- I learned about what sensitive hearts Ethan and Emily have

- I learned about Asperger's Syndrome and how to be more scheduled

- I learned that it is possible to homeschool while not at home

- I have learned that stress makes my hair fall out

- I learned how to live simply

- I have learned what truly matters in life is faith in the Lord and the love of our family

- I have learned what a blessing it is to have good health

I pray that our "life lessons" will not be quite so hard this year. I pray that this year will be a year of hope and happiness for our family and also for the Hibberts. I pray that they will continue to find peace in the presence of the Lord. I pray that this new baby that they are expecting will be healthy and a pure blessing to them. And finally, I pray that the Lord will bless all who have faithfully prayed for our family and the Hibberts.

God Bless and Joyfull 2009 to all,

Mary