Headed home!

Little Bear's last appointment in California was this morning. The cardiologist said everything looks good! The stitches from the drainage tubes are out! And we are headed home tonight!!
We are still cautioned to keep LB germ-free for 6 wks and to watch for signs of infection because we aren't out of the woods with possibilities of infection to the heart. We will probably continue to be a bit overprotective. I think he is destined to be a bit sheltered, maybe for the rest of his life. But he's alive, gaining strength by the day, and God does indeed have more and bigger plans for LB's precious life on earth!! We know there will be at least one more surgery but hopefully we won't be facing that for several more years.
We are all sooooo thankful for life, health, and plane tickets home!!!!!

Little Bear's Story

Hi, this is Little Bear, and here is the story of my heart surgery:

In the days between my catheterization and surgery we had as much fun as we could, while still trying to lay low since my leg was a little sore and Mommy and Daddy said I couldn't be too crazy.

Baby Sister and I played together a lot. I just think "our baby" is the cutest!

We all got tattoos.

I got to play outside in the beautiful flowers at Uncle C's place.

And I blew some pretty amazing bubbles!

Thursday morning we woke up, said our prayers for the day, and had a delicious breakfast of jello and popsicles. I wasn't as excited as I was when we had this breakfast on Monday morning before my cath, but I still enjoyed it. Yum!

After breakfast we laid around watching movies and playing in the hotel until it was time to head to the hospital.

When we got to the hospital we watched cartoons and played doctor/patient in the waiting room with the dolls and medical equipment. I didn't even start to get hungry or thirsty until right before it was time to head back to the O.R. (afternoon). Mommy said she was so proud of me and felt blessed that I wasn't whining about food all morning.

After we had talked with the nurse for awhile, watched some movies, changed into the hospital clothes (that I was not nearly as excited to wear this time), and drank the yucky medicine (which I REALLY didn't want this time), the doctors and nurses took me for a walk on a moving bed. Mommy and Daddy said I was a little "out of it" by this point but I still knew everything that was going on and wanted to make sure my parents were with me. The nurses and doctors that were pushing the bed told me to tell Mommy and Daddy goodbye once we got to a set of double doors that only "special people" got to go through. I was sad to leave Mommy and Daddy and kind of confused about what was going on, but I was really brave and didn't cry.

From this point I don't know exactly what happened. I was breathing yummy bubblegum smells through a mask and the next thing I knew I woke up in a bright, loud room and I was very uncomfortable. The only comfort was that Daddy was there with me and he had my favorite blanket and best friend, Teddy. He told me that Mommy was with Baby Sister and I would get to see her in a few hours. I had a really hard time sleeping that night but finally took a long nap in the morning. These were some of the machines in my room that were pumping medicine through the tubes hooked to me.

This is a picture Mommy took the morning after my surgery. I was sleeping when she got there. I was so glad I had my blanket and Teddy to snuggle with. It made me feel a TINY bit more at home.

I was really upset that there was a tube of "oxygen" going into my nose and I kept messing with it all morning, trying to get it out. FINALLY, the nurse told me that I was breathing well without it and I could take it out! Yippee!! I was still upset about all the other tubes but was glad to see that one go!

I wasn't feeling up to doing much besides laying in bed and watching movies but the nurses and Mommy said I would get better faster if I were to sit up more and move around a little. So that afternoon they took me for a wagon ride. I wasn't very excited about it but I didn't really have a choice so I went.

Shortly after the wagon ride, the ICU nurses were ready to take me to another floor where I would not need the critical care anymore. It was much quieter in this room and it was just Mommy and me so I was able to settle down and take a pretty good afternoon nap.

Mommy held me as often as she could and gave me LOTS of snuggles. It made the whole experience a little bit easier for me. She also helped me eat cereal and other foods so that I'd get stronger and soon be able to get out of bed and walk around a little.

Baby Sister and Grandma hung out in my room most of the day now that we were in our own room out of the ICU while Daddy slept back at the hotel. I was glad they could be there with me. It made me feel a little bit more like things were normal.

When they took out my drainage tubes and pacemaker wires that were in my chest it was very painful and I cried a lot but Mommy was there with me and kept telling me how brave I was and that it was almost over. After they were out I laid still and watched a long movie while I snuggled with Mommy and all of a sudden I was feeling much better. I was still really tired and not ready to play much but I was sitting up much more comfortably and just needed a good night's sleep to really boost my energy for the next day.

By late the next morning I was out of bed and sitting on the couch in my room eating fresh blueberries that my aunt had sent with Grandma.

Sitting up on the couch with all of my toys made me realize I really was feeling better. Pretty soon I was standing up, walking around (a little wobbly), and playing! Mommy was soooo happy!

That afternoon, my nap was interrupted by doctors coming in to tell me I could go home. I was glad to be getting out of there, but I was so exhausted that I still wasn't in a very happy mood. Mommy and Daddy got me dressed and I waited for them to get all of our stuff together so we could leave.

Back at the hotel we watched a little cartoon and then took our first nap outside of the hospital. It was wonderful!

More cartoons with Daddy the next morning while Mommy packed us up and got us ready to check out of the hotel...

...and then we had a surprise at Uncle C's house when we arrived--my cousin and aunt were still there with Grandma! I got to see them for just a few minutes before they headed home.

Then Mommy let me put my "Beads of Courage" on my necklace. The hospital gave me these beads. Each one represents a different part of my journey through heart surgery.

I really just wanted to go home. Being in California reminded me of all the bad memories from the past week, even in the safety of Uncle C's house. But we played and had fun, and my sense of humor and silliness started to return as I began to realized that maybe all the awful hospital stuff really was over with.

Daddy and I played with my favorite MarbleWorks game that Grandma had brought to Uncle C's house.

And I played with all of the stickers that I got while I was at the hospital.

Finally, it was Friday morning and I had my LAST doctor's appointment at the hospital in California!! The doctor said I looked great and I could go home that night on an airplane!

We looked at the trains at the hospital one last time.

And we were out of there!!

We got home really late Friday night but I was so excited to be back that I couldn't sleep a wink in the car ride home. When we got there we were greeted by a nice surprise!! Our amazing neighbors had come into the house and put up a "Welcome Home Ben!" banner and balloons! They also left me stickers to play with and a nice card that everyone had signed. What a treat!

Mommy and Daddy say that I was a rockstar and got out of the hospital really quickly but to me it felt like an eternity! Now that I'm in the comfort of my home I am gaining strength everyday. I am slowly starting to sleep better and eat more. I am actually feeling pretty good! I still have a few bad memories from my time in California but I understand that my "long owie" is there because the doctor fixed my heart and now I can run faster, jump higher, and play harder! And Mommy and Daddy are so thankful!!!! Thanks for all of your prayers and support through all of this! We all faired better because of them!

Resting at Uncle C's

We are very blessed to have Uncle C live down in this area because he was willing to let us stay with him as much as was suitable while we were here. We chose to stay in a hotel much closer to the hotel for the duration of LB's stay, but the days between the office visit, the cath, and the surgery, and now after surgery and before the appointment on Friday have been so much more relaxing and peaceful than they would've been in a tiny hotel room. SOOO thankful for Uncle C's hospitality!

Since leaving the hospital Little Bear has still had a great deal of discomforts and anxiety. It may have been much quieter at the hotel Monday night and at Uncle C's last night but he still did not sleep well. This afternoon was the first GOOD nap he's taken since before surgery (almost 3 hours which is a very typical nap for him before all of this trauma) so praise God he's feeling a little more comfortable and/or less anxious so that he's able to sleep. He is also taking his medicine for us with a LITTLE less fight. He still really really really really doesn't want to drink it but we figured out how to make it taste a little better with a little fruit juice mixed in.

Today has consisted of some movies and rest, but a LOT more playing and activity and all-around happiness! Tonight he ate almost 2 pieces of pizza and then asked for a snack later this evening. Our boy is on his way back!

Checked out!

It's official! Little Bear has been discharged and we are resting peacefully at our hotel! We won't get to go home until Friday evening because the cardiologist here wants to see him once more that morning. If things check out then we are free to head on home! Yippee!

LB was so brave but has been through more physical and emotional trauma this past week than most people experience in a lifetime! Our God is big though and I know He will guide us as parents and give us wisdom to help him recover fully in both areas. I am so very thankful for surgeons, doctors, nurses, and all those who are blessed with the knowledge to help get us through something like this, and ever so grateful that they chose to let God use them to perform miracles such as ours (whether they realize it or not)!

Now, if you'll excuse me, I'm going to go snuggle my little miracle himself. :D

Tubes are out

Prayers needed! The tubes are out! Little Bear was soooooo brave! Braver than I ever would've been for sure! Now they just finished a chest xray to make sure that no air entered during the removal. If he's all clear they are hoping to discharge LB tomorrow!!!! Wowzers!!!
More later! Prayers now!

Getting close

I have to remind myself every once in awhile that Little Bear just had open heart surgery a few days ago. Yesterday was so very hard for him and us! He had some yucky things done to him and cried a lot of tears. The good news is he is still moving forward and the doctors think he looks good enough to have his drainage tubes in his chest removed today and would possibly be ready to send us home tomorrow! The problem with that plan is that today is Sunday so there aren't a lot of surgeons available. The one who they had planned to remove them is currently in the OR and may not be done in time. If not though, they are coming out tomorrow. It will be painful and quite traumatic but once it's done the only invasive thing left will be the iv. Yippee! Prayers for the removal of the tubes--that it would be quick, easy, and painless! Prayers for strength for LB!!! Hopefully no more than two more days of this!!!

Our own room

Yesterday afternoon, Little Bear got to go for a wagon ride to his new room. He was moved out of the ICU less than 24 hours after arriving and is now on a different floor where they care for the kids before sending them home. He'll certainly be here much longer than he was in the ICU but it's so much quieter here. They are watching the monitors closely and check his vitals regularly but mess with him much less than before. Which is good because he's getting quite tired of being poked and prodded. Even a thermometer or stethoscope is enough to bring about tears and anxiety for the poor little guy. The nurses only check vitals every 4 hours but he has to have medication at different intervals and the doctors and nurse practitioners check in a few times a day, not to mention the X-rays, EKGs, and ECHOs.

Little Bear was pretty restless in the night, which means that Daddy Bear was up with him most of that time, but they are both napping now--Daddy Bear back at the hotel--and hopefully LB will feel much better by the time he wakes up for lunch.

LB still has two drainage tubes in his chest which make it difficult to move around much but one of them might come out this evening and the other hopefully tomorrow. Little by little we keep moving forward. He made leaps and bounds the first 24 hours and got out of the ICU very quickly, but now we'll be in this room for a few more days it seems. We are fine with that and will do everything we can to make LB as comfortable and at peace as possible the rest of our time here. It isn't easy but it is quite miraculous! We have so much to be thankful for!!

Doing great!!

LB is off the ventilator as of midnight and doing well! He is very fussy due to lack of sleep and irritation with all the lines and tubes but he's progressing well. He has slept very little since extubation. They finally gave him some medicine on top of the pain meds to help him sleep a little this morning. After nurse shift change at 7 a.m., I, Mama Bear, have been back with him while Daddy Bear sleeps and Grandma helps with Baby Sister. I just finished feeding BS and got back in with LB to find his Oxygen off!! Yay!! Another step forward. They're watching him today to see how he does and may move him late afternoon to an intermediate icu if he's doing well.
We praise God for great progress and pray to God for continued progress!!

Out of surgery

We spoke with the surgeon and things went well. They are moving LB to ICU and after he's settled we'll be called back. Praise God for a successful surgery!! Now we pray for a quick and easy recovery for LB and no complications. Thank you for all of your prayers today! We definitely felt the covering!

In God's Hands

Right on time. Just watched our sweetie roll into the OR. Sitting up, watching a movie, thinking he's going for a walk where only "certain special people get to go." God be with him!

A Mother's Prayer

Mama Bear writes:

Trying to meditate on God's word tonight as I lay here in bed wishing we could get on an airplane and fly home tomorrow morning, bypassing the hospital altogether. But I know that without my LB's surgery at 5 wks old he would not be here today. And without this surgery tomorrow he would probably not be here a year from now. I know it must happen.

I. Just. Don't. Want. It. To. Yet.

Please Lord, grant me restful sleep! Please multiply the hours that I rest because it will probably only be a few.
Help me to "gird my loins" and put on your "armor" so that I might be able to face tomorrow with a brave face and a peaceful heart. Please help me get through this. And HEAL my baby boy!!! I wish I could fast forward to a month from now. But I can't. So I'll cry now, in the dark. And smile tomorrow, in the light. And put one foot in front of the other with strength that comes ONLY from You, my God.

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.
Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things."(Philippians 4:6-8 NASB)

Updating with my phone??

I want to be able to update the blog from my phone in the next several days so here is my attempt with a free app. I may purchase a better one if I like what I see so that I can update w/ pics too.
Here is my test.

Whew! The Cath is OVER!

Praise God!! Today was successful and today is over!!

The catheterization went just as planned. Our sweet boy made it through and we are back at Uncle C's house resting and recuperating. LB is in good spirits, besides being a bit tired and having a little sore throat from the ventilator and a sore leg from the cath.

We started the morning with our breakfast of popsicles and jello.

Then we watched cartoons until it was time to head to the hospital.

At the hospital LB held his sweet Baby Sister while she spit up--a very common occurrence.

And then watched some more cartoons.

We were very thankful for the toys and tvs in the surgery waiting room since we were there for a couple of hours before the cath began.

Here LB watches yet some more tv as Super Daddy Bear juggles both kids--LB is sitting up and getting ready to go home.

LB's first chance to take a walk and he went straight for the toy chest! Man was he glad to be out of that bed!!! And happy he got to pick a toy to take home.

Now we rest rest rest and play play play the next two days because the stress, anxiety, and potentially the duration of both will be exponentially greater in the days to come. We spoke with one of the NPs today who will be with LB during Thursday's surgery. She talked with us more about the possible complications and risks involved. Though there are many, there are less than there were when he was just 5 wks old having this surgery. That was encouraging to hear. And we FULLY trust in God's Divine Providence and believe that our Little Bear has a lot more living to do and a lot of lives yet to win for Christ. We believe God CAN and pray He WILL use the surgeon's hands this Thursday to repair LB's little heart so that it is fully functioning and ready to go for several more years. But in the words of C.S. Lewis, "We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be."

I am eternally grateful for my faith, my husband, and all of your prayers, for without them I do not believe I would make it through this alive (Carey speaking).

We thank you for walking, and praying, with us to this point on the journey and can relax knowing of your continual intercessions!

Much love and many blessings!!!

A Day in SF!

Today we headed to SF to do a little sightseeing. We had all been before, except for Baby Sister, but Little Bear is a year older than he was during the last visit so he could enjoy it even more than the last time.

First we headed down to the Wharf and saw the submarine. LB wanted to "push it down into the water." :)

Did you know there were 80 men aboard for 75 days with no showering?? Oh my!

Then we went into the antique arcade and played a few quarter games. I'm not sure which Little Bear enjoyed more--putting the quarters in or actually playing the games.

Alcatraz in the background--Baby Sister enjoyed her sightseeing with her eyes closed.

The sea lions! Such funny creatures!

The family!

Golden Gate in the background.

The trollies--we talked about riding on them all morning but by the time we were ready the line was an hour long and we were already approaching naptime so we had to distract and bribe the three year old and head back to the car. If things go well tomorrow and LB is feeling up to it, we're thinking that maybe we can head back on Wednesday (unless we think of something better--like the beach!).

We got in the car and headed direction Uncle C's house, but first we crossed over the Golden Gate Bridge.

We wanted to get a good shot from one of the viewpoints but by now naptime was overdue and we HAD to get back. So this was the best viewpoint we got--and it was CRAZY windy! Hold on!!

Now we're resting up, getting ready for a breakfast of jello and popsicles, and praying for a smooth and surprise-free day tomorrow!!

Jesus, we trust in you!!

One LONG Day of Cardiology

WAY too early Thursday morning, we packed up and headed south to California.

Most of you reading this probably know that Little Bear was born with a heart defect. He had open heart surgery when he was just 5 brave little weeks old and is about to potentially face his second one at only 3 brave little years old.

Friday was the first step during our stay down here. We had appointments with doctors, nurses, anesthesiologists, sonographers, etc. Little Bear had an ECHO, EKG, Xrays, and bloodwork. And he was SOOOO brave!

We did a lot of sitting around and waiting in between appointments and did a lot of watching cartoons in the waiting rooms.

By the time the day was over we were all completely exhausted! Especially Little Bear. Mama Bear let him watch a movie on her phone in the car on the way to his uncle's house (where we're staying for the first part of our time here).

When we got to Uncle C's house, LB proudly showed me all of the stickers he got for his bravery throughout the day.

Today, we have been enjoying the view from Uncle C's house.

LB has been playing with toys and treats sent from dear Oklahoma friends.

And swimming at the pool.

Baby Sister has been enjoying herself too, doing a lot of this.

Monday is Little Bear's catheterization, scheduled for 11 a.m. Pacific Time. We are praying that there are no complications, that LB does well drinking the medication that begins the sedation process, that the doctor performing the cath makes wise decisions and has skillful hands, that LB recovers quickly from the procedure and isn't too traumatized, and that he stays healthy, along with the rest of our family, as we will probably be heading back up to the hospital on Thursday for LB's open-heart surgery #2. Please pray with us!!!!