Journey to China

This blog documents the Spitlers' progress towards the adoption of Xia Ping He (Noah Spitler) from the PR China. It also documents Noah's medical process in pursuit of a total repair to his CHD (congenital heart defect).

Thursday, August 16, 2012

Photos from California

Sorry it took awhile, folks.  Here are the pictures from California.  Noah continues to feel good.  He should have a lung profusion scan soon and then we'll know more.

Thanks for your prayers and friendship,

Adam (& Robin)










Saturday, August 4, 2012

One Tough Day, One Great Day

Hi Everyone,

We had a successful trip to Northern California this week.  One really cool surprise was discovering that Dave "Picker" Cotton (a friend I flew F16s with) was the pilot of our B767 flight to San Francisco!  When we took off, I told Noah, "You know, Mr. Dave is flying us all the way to California, so you'll have to judge the flight and his landing and tell him how he did when we get off the plane!"  Half-way to San Francisco, Noah fell asleep and stayed that way all the way to the gate.  When it was time to get off the plane, I woke him - he immediately said, "Dad, how was Mr. Dave's landing?!?" And I said, "Well, what do YOU think?" Noah hesitated for a minute then replied, "Well, I didn't even wake up...so it must have been a good one!"  It was, indeed, a great flight.  Thanks, Picker!

Wednesday was consumed by a quick "Ride the Ducks" tour of San Francisco, visiting with the Lietzau's, and getting some much-needed rest.  If you get a chance someday to take a "Ride the Ducks" tour - we highly recommend it! (I'll try to post pictures later).

Thursday was a bit of a tough day; our first day at LCPH (Lucille Packard Childrens Hospital).   Noah's vitals were checked and he had another ECG (echocardiogram).  During the "pre-brief" for Friday's heart cath, we learned that the ECG revealed narrowing in some of Noah's pulmonary arteries and that his right ventricle was enlarged.  We also learned (for the first time - or did we miss this earlier?) that the conduit installed last year normally lasts only 3-5 years and then must be replaced (by surgery).  So as we were digesting all of this new information, the doctor then told Noah he'd have to go by the lab for a blood draw.  Unfortunately, his veins and the phlebotomist didn't get along too well, so it took 3 or 4 tries before success was achieved.  Noah was very, very brave through it all; Olivia and Dad...well, we had to excuse ourselves for most of it.  But, soon enough, it was over and Noah had a couple "manly" bandages to show for it all. (Again, I'll try to show some pictures later).  By that time it was well past noon, so we sought out some "comfort food" at a local favorite: "Lu Lu's" - home of the Super Burrito.  "Miss Elizabeth" Wise met us there and we shared lots of laughs.

Friday morning started off by Noah's consumption of apple juice and jello - the last things he could eat before 9am.  We signed into the Ford Surgery Center, Noah was wiped down with special cleaning pads, then he put on his "hospital pajamas".  Soon his "sleepy juice" arrived and he gulped it right down.  Only one parent was allowed to accompany Noah into the "cath lab," and after much agonizing, Noah picked Robin.  ("Good decision, son!")  That meant Robin got to wear the "bunny suit," booties, and cap; I got to play photographer.  (Again, I promise pictures!)  Promptly at noon, Robin left Noah in surgery - he was literally holding his eyelids open with his fingers; exclaiming, "See, I'm still not sleepy!"  We were told to expect a 2-4 hour procedure, depending on whether they dilated any arteries (ballooning) or simply took pressures and observations.

Just a bit past 2 hours, Dr. Perry (the cardiologist and heart cath expert) sought us out with good news: Noah's procedure was complete and they were able to stretch 2 portions of his right "pulmonary artery" from a very small 2mm up to 6mm in diameter.  Noah's RV (Right Ventricle) pressure (previously 36), then reduced to 30 - a much better number.  Dr. Perry said that the conduit looked "very good" and looked to be big enough to sustain Noah for quite awhile (another 2-3 years??).  We were led down to the recovery room where we found a very sedated Noah, sleeping on his back, stiff as a board.  "You'd better get a video of that!", Robin said with a laugh; "I've never seen him that still."  After an hour, we wheeled him upstairs to the notorious "3 West" - the "low-threat" recovery area of LPCH.  He had a few stomach issues - did even want a Popsicle for awhile; but later took a nap and felt better afterwards.

It's now the end of our day. Noah is staying the night in LPCH (for observation after his artery dilations) and I'm his co-pilot.  He's now had 2 Popsicles, a bowl of broth, a bag of pretzels, and a cup of chicken noodle soup!  With a little pressure from her husband, Robin headed for the Marriott, and since the girls are at the Lietzau's, she just might get a much-needed night alone in a hotel room!  Go, Robin!

Thanks for all your prayers today, friends.  It's been a difficult week for us, but today was good.  Once again, God's grace helped Noah remain calm and helped me overcome my normal hospital anxieties.  We thank God for the amazing collection of talent and compassion He's assembled at LPCH.  It's a long trip out here, but for our Noah, it's worth every mile!

If possible, I'll get the correct cord we need to transfer pictures to the web, and post those for you this weekend.

Your friends in Christ,
Adam & Robin

Sunday, July 29, 2012

Back to San Francisco!

Hi Everyone,

I know it's been 9 months since our last blog, so if you don't happen to live near us (and receive periodic updates), here is a brief word on Noah's health.  Noah is doing very well. Since his return from California last September, Noah's grown about 1+1/4 inches, added about 10 lbs., and has experienced very, very few respiratory illnesses (unlike before his repair, when he had a cough or cold every 6-8 weeks).  His teeth have done a lot of catching up - he's currently missing some or all of 7 teeth - either having fallen out or needing to have been pulled.  His energy level is very normal for an 8 year old, which means he does a lot of running around the house and throwing himself on the floor.  He loves to ride bikes and play any sort of video or computer game.  We'll try to post some pictures soon.

The reason for this posting is to let you know we'll be returning to San Francisco later this week. 
Dr. Hanley asked that Noah return to LPCH for a one year follow-up heart cath, which is scheduled for Friday.  Other than the normal risks associated with a heart cath, we don't have any known concerns for Noah, other than a slight increase in his "right side" heart blood pressure (going to the lungs).  I'm sure the heart cath will determine the cause of this.

We'll try to post the pictures and updates later this week.  Thanks for your prayers!

Adam and Robin


Thursday, February 16, 2012

2012 Spitler Family Update

Hello Everyone,
I know you probably think we all dropped off the face of the earth but we haven't. We are still here in Statesboro living our everyday life...home, church, school, friends, family and oh, the drama that never seems to end. To catch you all up on how we all are, here goes...
Noah is doing very well. He is running around at the speed of light and never seems to stop. He has more energy than he knows what to do with. His overall health is very good. He continues to gain weight here and there and is growing taller. He is as handsome as ever and has a personality the screams, "Look at me"! He is enjoying first grade and has many friends. He has the best teacher EVER. She has worked very hard with him to get him up to speed in all aspects of his schooling. She is the most patient women I have ever met. Noah loves to play video games, swing outside, play with friends and with his sisters. It has been a challenge to help him understand that parents are in charge and not him :) We pray every day that he will come to truly grasp what it meant to live in a family, submit to authority, and learn about who Jesus is and his saving grace. We continue to ask you all to pray for us on these matters as we continue on this journey. Actually, sometimes it is more of a drama than a journey but you can use which ever word you like best.
Madison is doing well also. She is a thriving and beautiful 8th grader. I am so happy to be home to see her, and Olivia, after being gone for so long. Madison played volleyball at school while Noah and I were in California. She seems to really like playing. She also enjoys her art class at school. She is a very artistic girl and has ambitions of using her art abilities in the future. Madison loves hanging out with her friends, listening to music, dabbling on Pintrist, and being involved in the youth group at church.
Olivia, the princess, is having a great life...every day. She almost always has a smile on her face and loves to have FUN!!! She spends a lot of time playing with Noah and her friends. She loves to watch movies, play on the Wii (dancing of course), and reading. She is loved by all and loves all.
To catch you all up on the events of late I will add some pictures from various events and holidays so you can see the fun we have been having. Thank you all again so much for all of the prayers you have said for our family. The last year to two years have been the crazies roller coaster ride and our survival is only because of the Lord and you all. You, again, have prayed, made meals, sent gift cards, been a taxi driver, nanny, and so much more. We love you all and pray the Lord will bless you for all you have done.
Last but not least, I want to say a BIG thank you to my husband, Adam. There are no words that can ever truly show how much I love and appreciate you. You are my best friend and supporter. You did so much while Noah and I were away. You truly came to know how it would feel to be a single parent trying to do it all. It was so much work but you did a super job. Thank you love. You deserve a major vacation to some exotic place...oh, and I of course will join you :) THANKS!























Saturday, November 5, 2011

Hart to Heart: Chinese adoption story fueled by faith | savannahnow.com

Hart to Heart: Chinese adoption story fueled by faith | savannahnow.com

Wednesday, October 12, 2011

Very Brief (but good) Update

Hi Friends,

Noah is doing very well; we have good news to report.

The appointment with Dr. Long, (his pediatric cardiologist) went very well,
and we learned that the distribution of blood to his lungs is very good.
Noah will be restricted from rough activity (bike riding, sports, climbing
playgrounds) for at least a few months- until his chest is much stronger.
Dr. Long will continue to monitor Noah's heart and lungs, as the vegetation
(clot) still exist in his heart, and could remain there for a long time.

Noah had a second appointment this past Monday- in Atlanta (Emory
Univ/Egleston). This appointment, with infectious disease doctors, also
went well. They decided to end Noah's course of antibiotics (Nafcillin and
Rifampin), and even removed his PICC line! (A big yea!)

So, after starting with 13 "holes or tubes" in his body back on July 14th,
Noah is finally down to zero!

Noah was quite pleased to get his PICC line out, but no one was happier
than Momma! For the first time in a month, Robin didn't have to hook up or
disconnect an I-V every 4 hours; and she got a much-needed 9 hours of
uninterrupted sleep Monday night!

So, that's the quick update. I know Robin will post more details and
pictures soon. Thanks again for all the prayers and wonderful support. God
bless each of you.

Adam (for all the Spitlers)

Thursday, October 6, 2011

Fun Times & Miracles

I cannot truly express how happy I (we) are to be home. It is so nice to sleep in my own bed and be surrounded by my family. Going through difficult times sure does make you appreciate the blessings that God has given us. We are finally settling into life back in "the Boro". The weather is great and is giving us a hint that Fall is approaching. This is my favorite time of the year! I love to see the changing leaves, the pumpkins and the cotton growing in the fields. Didn't see many cotton fields in California.
Noah is doing great and is running almost everywhere he goes. This is a new scene for us because he is doing it without loosing his breath. What a miracle. He is a precious boy and we love him so very much. The girls are great too. Olivia has a thriving small business that she is so into at school. She spends most evenings crafting things like bracelets and pot holders. She is having fun and learning some good lessons in the process. Madison is almost finished with her first season of volleyball and has really enjoyed it. She is doing well and is looking forward to playing more in the future. Adam continues to work hard at keeping our family glued together and is doing a great job. I am so happy to have my best friend by my side again.
I am including some pictures of some of the welcome home signs that our good friends in the neighborhood put out for us. They were so great and we really enjoyed them. Our neighbors were a great support for our family. We couldn't have made it through everything without them.
Thanks everyone! We are blessed to know you all.














































Last Saturday our family went to Gulfstream for "Family Day". We had a lot of fun eating cotton candy, touring the plant and hanging out with friends. We also went by and saw Adam's grandma. We had a nice visit with her and also saw Adam's aunt.































Last night Noah and I saw down and put together two big necklaces. They were made from the beads that Noah received at the hospital. They have a program called, "Beads of Courage". These beads represent all of the things that Noah had to do in the hospital. For every procedure he had done there was a bead that stood for that procedure. They ranged from heart surgery to blood draw to dressing changes. I am including some photos of Noah and his beads. This is much like getting a trophy when you win a contest. As you can see, Noah has a lot of trophies.







































Finally, I want to include two stories about some recent miracles that we have been privileged to hear about. In the last two weeks we know of two ladies who have been fighting cancer for many years. They both had been told that there was nothing else that could be done and basically they were doing everything to make their last days really count. In both cases these God fearing and God believing ladies had many people praying for them. One of the ladies I have known for years and she is the kind of person that lights up a room with her love of the Lord. She is simply amazing. They each had a final scan that showed that their cancer had just disappeared. The doctors told them it was gone. There was no logical reason for it to disappear but it did. This has been a big reminder to all of us that miracles still happen. God, the maker of the Universe as well as each of us on this Earth is in control. I know that our family has learned this through the last couple of months but this is still another example that supports that fact. Now, does this outcome happen to everyone? No, but it does show that miracles are not just something that used to happen but they still happen today. I am so thankful that I belong to God and He loves me. He wants me to know Him up close and personal, not from a distance. I am so thankful for prayer and for the opportunity to pray whenever I want to---in good times and bad.
I want to thank you all for the prayers. They have been needed and still are needed. We love you all and I pray blessings on you and your families!

Sunday, October 2, 2011

Bittersweet Weekend

It was a great first weekend back together as a family, but as life often is, also had some bitterness. Today marks a difficult milestone for us - 6 months since an aircraft accident that claimed the lives of 4 great men; Dave, Kent, Reece and Vivan. As we celebrated the joy of our family being reunited, we were still reminded of these families who must wait until Heaven to be reunited with their husbands, fathers, brothers and sons.














We are dedicating today's blog to Vivan LeRoy Ragusa, II; my good friend and Christian brother. I miss him for many reasons, beyond just flying with him and seeing him at work. He was a strong follower of Jesus Christ, and that empowered him to be an impeccable Dad, Husband, and loyal friend.

Vivan also cared deeply for our Noah. His interest was truly genuine. Some of you might remember that Noah's initial diagnosis came with some concern: Dr. Hanley might not be able to take Noah as a patient because of his (older) age. When Vivan heard this, he began calling and emailing friends of his who were surgeons at Johns Hopkins. He had a "second opinion" or "backup option" all lined up for us should San Francisco not be able to take us. So, though Thursday was a joyous day for the Spitlers, we were a bit sad, knowing that Vivan would've loved to see Noah come home from California with a "new heart". We were especially honored that Vivan's wife (of 16 years), Jane, was able to celebrate with us.

Please join us in praying for Jane and their three sons, as well as the families of all lost that tragic morning.

Thank you,
Adam

Ps 46:10 "Be still and KNOW that I am God."

Thursday, September 29, 2011

Home Sweet Home

The Spitlers are all under one roof again - this time at home!

Robin and Noah had a successful trip home. There were no troubles getting through security or between gates, thanks to our great travel agent/friends who set up a Delta "Meet and Assist" (including electric cart between gates). Robin said Noah slept during the first flight (San Francisco to Atlanta), but she got no sleep whatsoever. The second leg (Atlanta to Savannah) was on time, but very rough; Noah got airsick several times and Robin felt queasy.

But, after all, they arrived into Savannah on time and to a good-sized crowd of friends, family, balloons, signs, and gifts. We knew many of you wanted to come out (but could not), so thanks so much for those of you who were able!

We got home around noon - surprised to find that several neighbors had added "Welcome Home" signs to their yards (and ours!). Wow - again, we are humbled by the thoughtfulness of many friends and family members.

First thing on the agenda was a much-needed nap; and it took no coaxing to get the entire house down for a nap. Dinner was provided by more neighbors and we are ready for a full night's rest. There is nothing like being at home, even if it does still include a 4 and 6 hour regimen of IV doses.

God is Good. Thank Him on our behalf and thank Him for giving great skill and training to
Dr. Hanley and his entire staff at LPCH. You can clearly see the difference in our Noah's appearance that the heart repair is making!

Adam

Wednesday, September 28, 2011

Pack N Go!

Hi Everyone,

Adam here; blogging for Robin. She's busy packing - they're coming home!

Yes, Robin and Noah will board a Delta flight late tonight and ride the "red-eye" home, arriving into the Savannah airport around 9:20am Thursday, September 29th. Please feel no obligation, but if you're in the local area and want to drop by the airport - you are welcome to.

Thanks to everyone who has prayed for Robin's health - that is returning quickly; and Robin told me today, "Noah is beginning to run 'full strength'", so those are two big answers to prayer.

Noah will still require IV medications every 6 hours, but more good news (as of today) is that one of his antibiotics was switched from IV to oral method. Again, thank God for things looking better and getting easier!

God Bless each of you. The purpose of this blog has only been to keep you informed, but more importantly to give Glory to God for what He has accomplished. He has carried us the whole way.

I'd like to post a few lines from a new Steven Curtis Chapman song; this "says it all" from where I am right now:

--Adam

("Long Way Home" by Steven Curtis Chapman; from the album Re:Creation)


I set out on a great adventure
The day my Father started leading me home
He said there gonna be some mountains to climb
And some valleys we’re gonna go through
But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper and the mountains are steeper
Than I ever would of dream


But I know we’re gonna make it
And I know we’re gonna get there soon
And I know some times it feels like we……
Going the wrong way
But it’s just a long way home

Saturday, September 24, 2011

Bright Hope for the Future


Sorry for the huge gap in blogging but there hasn't been too much going on that isn't our routine now. Noah was able to go to hospital school every day this week except Monday. He was able to play with my friend Elizabeth's niece this week too. They had a lot of fun together and hopefully we will see her again before we leave. Speaking of leaving.......
Today we pretty much got the go ahead to leave after Wednesday's ID appointment. We are planning toward that but we will see about it when it gets here. I am trying not to be too overly excited in case it all falls through. I will let you know.
Also, please pray for me. I have had some health (minor) issues this past week and it is no fun to be sick while you are trying to be a nurse to someone else who is sick. I am feeling a little better today but I would appreciate the prayers.
Noah had his Echo. on Wed. and it appears the vegitation in his heart has remained the same. I was really praying it would completely go away but that didn't happen. All of his numbers are continuing to trend down which is a good sign. He will go in on Monday for his normal blood draw and PICC line dressing change. We then have an appointment with the ID folks Wednesday at 11:00. Again, I have no idea what this meeting will do. I keep saying, "What are they going to do? Just look at him and say he looks good." They should be able to look at his numbers and test results to know how well he is doing. I personally think it is a waste of time but I'll do whatever in order to go home. Noah should continue to be on antibiotics for several weeks. We will just continue them at home instead of at RMH on the other side of the country.
Well, that's all for now. I will include a picture of Noah on the blog. Thanks everyone for continuing to pray. We still need it so much. Blessings to you all.....

Tuesday, September 20, 2011

Fun & Frazzled

Sorry for the blog delay. Things have been busy around here. Noah is continuing to have his blood drawn and dressing changed on his PICC line every Monday. We did that yesterday which was not much fun. The blood draw part is no big deal but having the dressing changed on his PICC line is difficult because there is so much tape.
Sunday night was fun because my friend Melanie was baking pies and a cake for her daughters birthday on Monday. She is a wonderful baker and makes pies that are to die for. I am including some pictures of Noah helping her make the cake.

Yesterday they also opened up the new playground area here at RMH and Noah was honored to be one of the first kids to play on the new equipment. I will also include a few pictures from that event.

Last night Noah got his first hair cut since his surgery in July. He did a great job of being still and patient. He looked so hansom when the lady was finished. It was such a blessing to have someone come to the RMH and give the kids free haircuts. She did a great job.

Today Noah went to hospital school again. He was reluctant but ended up having a great time. Tonight we had a surprise visit from Uncle Scott. It was so good to see him and we enjoyed our visit. We also played Bingo here at the RMH and won a gift card to Jamba Juice. Noah is so excited about using the card so we may have to do that in the next few days.
Please be in prayer for tomorrow morning. Noah has an Echo at nine o'clock to see what is happening with the vegitation in his heart. I am praying that it has gotten smaller or that it is completely gone. This would be great news.
I don't want to give anyone any false hopes but I (and Adam) are talking to the ID folks, cardiologist here and in Savannah about trying to come home to finish out his antibiotics. I can't say for sure if that is going to happen any time soon but if you all could pray for that it would be great. We so need to be back home and be together as a family again. It has been a long road and we are ready to see each other again. Thank yo all for the prayers and I hope I get to blog from my own home very soon. Blessings to you all!

Saturday, September 17, 2011

Fewer Meds, Fun Friends and Delicious Desserts

Hi Friends. Things are going well here at the Ronald McDonald House. We have some good news about some of our friends here and in the hospital. One of our friends, little Audrey, received her new heart on 9/11. I ran into her Mom at the hospital library the day before yesterday and she told me the good news. I have been praying for Audrey for a long time so I happy for them. She is a darling 6 month old and she is doing very well. We also found out that our friend Kalmia is going home. I was so excited for them too. I have mentioned Kalmia in a previous blog. She is a fabulous girl and we love her very much. Matter of fact right now she is putting a Lego set together with Noah right now. I will include a picture of them hard at work.



I am also including a picture of her special Mom eating her birthday dessert at a local restaurant. We have really enjoyed meeting Lisa and Kalmia. Last night they hosted a dessert pizza party for all the kids here at RMH. It was very yummy and they were so sweet to do that for everyone. I am including some photos of Noah at the partyI will also include the pictures of the RMH that I promised in my previous post.

This morning after a wonderful breakfast that was provided by a group in the local area we went across the street to a bakery. We had fun hanging out and playing a game of UNO. We also purchased some special desserts that were delicious. Noah got a raspberry chocolate mousse and I got an almond tart. It was nice to get out and away from the RMH and the hospital for a while. I will include a picture of Noah and his dessert.
Yesterday I got a phone call from the hospital and they wanted us to come by for a special meeting. This meeting scheduled so I could get some better information about Noah's future care and possibly a plan for going home. While in the waiting room I received a message from the ID (infectious disease) lady, Julia. She said she had talked with the cardiologists and they didn't have a problem with us moving to Savannah. She said she was going to work on our case next week and try to come up with a plan. I was unable to get back to her before five so I don't really know all of the details about what they are thinking. I ask for you all to keep praying for us and the plan they come up for us. It seems they think we might be able to travel by the six week mark but I am not putting stock into that plan until I get more information. I will let you all know something as soon as I found out something new. The good news is Noah has gained weight. He is now 42 pounds. That is the most he has weighed since we met him in China. I am also going to be able to taper most of his medications down so all he will be on is his IV antibiotics. The antibiotic schedule is still difficult but the fewer medications he is on, the better. Monday we go to have another blood draw and dressing change. He is also supposed to have another Echo on Wednesday. Pray that the vegitation in his heart is decreased or at least unchanged. This is something they remain a little concerned about but even Dr. Hanley said it is something that could take up to six months to go away.
I am thankful we are finally to this point. Noah looks good and seems to feel good. He is sleeping well at night and maintains an even energy level during the day. He has not complained about any pain in his chest for many days. I am happy about that and feel his progress is good. Thanks for the prayers everyone and blessings to you all!!!