Cath Success!

Zach was such a brave little man today! We are so proud of him. He was in the cath lab for over 3 hours today and Dr. Bandisode said everything looked great. All his pressures were right where they want them to be. She placed a device (a stopper of sorts) in the fenestration and they coiled a couple of co-lateral vessels while they were at it. Co-lateral vessels form as the body tries to compensate for itself.

She said that we can expect those co-lateral vessels to open up from time to time throughout his life. They serve no purpose and actually cause his heart to work harder. Hopefully, we won't see MUSC for a few years before he needs another cath done. I can truly say that, as much as we owe to the great folks at MUSC, we will not miss coming down here.

Zach is resting peacefully here in the hotel, watching Toy Story 3. We will be ready for bed soon since we are all wiped out. The next 3 days will be filled with lots of couch-potato activities. Please pray that we will be able to keep the little man on the couch!

Also pray for some new heart friends that we met this morning in the waiting room. Harrison (2 months old) is in PCICU right now. He went to the pedi on Tuesday for upper respiratory symptoms, was admitted to the hospital for tachycardia, and was finally transferred (flown in) last night. His mom and dad, Paige and Kyle, are really having a tough time as they watch their son suffer. As of this morning, Harrison's heart rate is still as high as 220. Please pray that the doctors will be able to find a drug therapy to bring his heart rate down and as they try to figure out the cause of these issues. I feel blessed to know that God used us to reach out to them in their time of need.

Thank you to everyone for all your prayers for us! God is an amazing God!

Blogger's block

I seem to have a bit of writer's block lately --- or should we call it blogger's block? Or maybe I am just terribly lazy... or terribly busy... or all of the above! Anyway, I am still here and I am still keeping up with all of our heart buddies. I'm just not posting for some reason.

The only recent news that I have to share is that we rescheduled Zach's heart cath to the end of our Spring Break on March 31. They have to close the fenestration that they made during the Fontan. I had originally scheduled it around a school holiday so I would only have to miss 1 day of work, but with all the snowdays that we have to make up, we now have to go to school then. So, we will take a little "vacation" to Charleston during Spring Break. Zach is already anxious about it. He keeps asking, "When do we go to MUSC?" Of course, he has no sense of time, so I just tell him that it will be a long way off. Then, he will remind me that, "We need to go to that playroom!". It's good to know that he remembers how much fun the Atrium is!

Rebecca and her best friend, Sarah asked me to go out in the freezing cold yesterday afternoon to take some pictures of them together. I thought they turned out pretty good...

Of course, Zach had to get in on the action!



Prayers needed for a heart baby

Please lift up Mason, his mom, Neysa, and his dad, Todd. Mason was rushed by private jet to MUSC last night and may still be in surgery right now. You can read about his battle here.

An Update and Some Important Dates

Merry Christmas!!! I can't believe it is already December! I have a good start on my Christmas shopping - how about you?

We finished up most of our decorating last weekend, despite most of us being sick. Zach hung the first ornament on the tree, gave Daddy a huge hug and said "It's Christmas Time!!!" So cute! He hung maybe 2 more ornaments and lost interest. Oh, well. They say their attention span about equals their age in minutes, so that's about par for the course!

Ta-da!

Here's our hearth decor, which Zach has destroyed for the most part. He thinks it's all for him to play with.

Rebecca with her best friend, Sarah, in front of Rebecca's new Christmas tree she put up in her room

We just need to put out our reindeer, snowman, and lighted trees out front. It has been cold and/or rainy this week, so we haven't been able to do it yet. We also need to take our Christmas picture so I can get our Christmas cards ready to go out.

We have a couple of important dates on our calendar. First, Zach has a speech evaluation on Jan. 4. He talks with quite a lisp still and is not saying a lot of blended sounds. We'll just have to see what they say.

Also, Zach will have a heart cath done March 17 at MUSC. They need to close the fenestration that they created during the Fontan and I suppose they will have a look around to make sure everything is working well, too. Even though I dread going through another procedure, at least we know what to expect from Zach. We pray we will not have any surprises.

Every Heart Has a Story...

Today my good friend and fellow heart mom, Stef, shown below, is hosting a linking blogging thingy. Not sure what to call it, but it is a great way for heart families to connect and share their heart journeys. It is also a great way to spread awareness of the #1 birth defect in our country - Congenital Heart Defects.

Every heart is different but one thing's for sure... Every heart has a story! For us, we were "adopted" into this world of CHD's.

Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...

Our family a few hours after Zach's birth --- before we knew there was a problem...

Click here to visit and read the rest of this earlier post telling Zach's heart story...


Now, in August of 2010, I am proud to announce that we are post-Fontan and Zach is doing great! He is an amazing boy who is full of life and smiles for everyone he meets. He has started preschool and is learning new things every day. We are blessed.

Is it possible?

Can Zach, a.k.a. Flint Lockwood, really be back to normal already? Only 11 days after open heart surgery? He is feeling great (not even taking Tylenol!), sleeping great, and eating great (despite the Fat Free Diet). The only time he feels any pain is if he has to cough or sneeze (just the thought of it makes me cringe). Incredible! I shouldn't be surprised, really. Not with all the prayers that have been lifted up to The Great Physician.

Zach and Daddy laying in the bounce house playing with his bouquet of balloons that our good friends sent him.

Zach had a great visit with the cardiologist this morning. Zach was funny this morning as we headed downstairs for his x-ray. Daddy pointed down the hall and told him we were going to Radiology. Zach said, "No Dad, we hafta go to X-RAY!" When the doctor came in, the first thing Zach said was "I'm on a diet!" Great report: nothing of concern on the chest x-ray, sats were great at 92-94, blood pressure just where it oughtta be. We go back in 2 weeks for another chest x-ray. So now that I don't have anything to worry about heart-wise, I am worried about all these x-rays. Aye-aye-aye --- the life of a heart mom!

I talked to the dietician from MUSC for a little more guidance with our diet. We are VERY limited, but I think I have a good menu planned. I just hope Mr. Picky can hold out for another 5.5 weeks!

So, we are looking forward to a very restful weekend at home. Hopefully next week we will feel like getting out a little at a time. After all, we gotta go see Toy Story 3!

Look out MUSC, here we come!

Someone really should call ahead and warn the docs and nurses at MUSC that Zach is about to crash their party. The wildman is about to enter the building! The BIGGEST flirt in the world is about to work his magic! They might never be the same...

We have made the most of our weekend at home. We spent some time trying to prepare Zach for what he's getting ready to experience. Anyone that knows Zach knows that sitting in one place to play with anything for more than 2 seconds does not happen, so getting him to listen and doctor on the doll they sent home with us is like trying to hit a moving target.

I apologize for the lovely picture quality here --- this was taken with a cell phone

Zach has decided, "I don't want to go to Chwalstron. I just stay here." Well that's the end of that discussion. Who can blame him, wanting to stay here when he has had so much fun? Look at what he has been doing...

This is an inflatable bouncy thing (yes, in our living room!) that we have had up to entertain Zach for the past week. He discovered, while I was occupied in another part of the house, that he could flip it over, propped on our ottoman, climb up on the ottoman, and slide down! Pretty ingenious, I have to admit! We've been calling him MacGyver! We just hope we don't have to go to the hospital for something different, like a broken bone or something!

We have to pack up, have some lunch and head down the road after lunch. MUSC, here we come!

This is the beautiful Ravenel Bridge between Charleston and Mount Pleasant

Pre-op

We are home again after a long day at the hospital. We had a hard time deciding about whether to come back home or not, but we figured it would be much easier to entertain Zach at home for the weekend. One thing is for sure, we WILL be purchasing a car DVD player for the trip back!!!

Pre-op went very well and all is clear for surgery on Monday. Praise the Lord! Zach was such a brave boy during his vitals, EKG, echo, chest x-rays, and blood work (the worst of all). He flirted with all the nurses, as usual!

We have to be at the hospital at 5:30am (Ouch!!!) on Monday morning. They will take him back at around 7:30am (after a good dose of versed!) and they expect the surgery to take about 6 hours. He will be in PCICU for 2-3 days then on the floor for several days (a week to 10 days). He loved going to the playroom today, so hopefully he will be ready to get up and around so he can go play.

It is such a blessing to feel the prayers that all our friends and family are lifting up on our behalf. We have also been blessed with a wonderful place to stay while Zach is in the hospital. Our host family is so sweet and their bonus room is a haven.

Thank you for your continued prayers!

Making a list and checking it twice...

I'm making a to-do list and a packing list and a shopping list. We are getting ready to head to the "Low Country". MUSC. The Medical University of South Carolina. That place that causes a jumble of emotions --- hope, fear, determination, dread, relief, exasperation, compassion, fatigue, gratitude. Right now, the list-making is a way to occupy my mind with some purpose. Otherwise, my mind will carry me away to places that I don't want to be --- places where I fret and worry about that which I cannot control.

Zach asked me this morning, "What'cha doin'?"
"Making a list" I said.
"For what?" he asked.
"Of things to pack for our trip to Charleston" I said.
He thought for a moment. "Where I gonna stay?"
"You're going with Mommy and Daddy" I said.
"Why we going?" he asked.
"So we can go visit Dr. Bradley and some of his friends" I tried to say with some excitement in my voice.
"I don't want to get a shot" Zach said.

Fortunately, he dropped the conversation then and went back to munching on his breakfast.

My heart was so heavy as I thought about picking up the conversation with him later in the week. We must prepare him for what he is about to experience. We must help him to understand that he needs to go through this to make him better. There is no way he can understand it. He must learn to trust Mommy and Daddy to take care of him and do what's best for him. In the same way, my burdened heart must learn to trust the Lord to take care of us and do what's best for us.

It is all about faith.

Psalm 143:1
O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.


Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.
 
Psalm 28:7
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.


Psalm 147:3
He heals the brokenhearted and binds up their wounds.

Matthew 6:34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

1 Peter 5:7
Cast all your anxiety on him because he cares for you.

Bumped

We got home from our pre-op checkup with our cardiologist this morning to find a message on our machine from MUSC. I thought, "Maybe they just want to confirm everything...". No such luck.

We have been bumped.

They are having to clear the whole schedule next week so they can take care of some emergency cases. My heart goes out to those families. I hadn't ever thought about the fact that we were once one of those emergency cases (when Zach was 3 weeks old and registered a 65 on the pulse oximeter - yikes!) and may have caused some other family the heartache of having to rearrange their schedule. The woman I spoke to indicated that we might not be rescheduled until the end of the month.

I have been so bummed out all day. I know I shouldn't feel this way. I know that God is in control. We have so much to be thankful for... but most do not know how hard it is to prepare for your child's heart surgery. You get yourself all psyched up and ready to get it over with and behind you. You prepare yourself mentally (thinking about what to expect), physically (making arrangements for siblings, planning what to pack), and spiritually (sending out prayer requests). You stay cooped up, avoiding germs. You...

Ooooohhh! Hold on... Phone call from MUSC!

Hallelujah! Our new date is Monday, July 12. I can handle that. We will have to be there for pre-op on Friday, July 9, which is a bit inconvenient since we will be 4 hours from home, but I'm not complaining. Oh, thank you Lord!!!

Thank you for your prayers for Zach as we prepare! Continue to pray for all of us to stay healthy and for Dr. Bradley and his team.

Zach and Daddy wrestling/snuggling on Father's Day

Update on Zach's recovery

Finally Zach is feeling more like himself after his heart cath. Today, he had a ball playing outside. It's really the first day that he's felt like being up and around (and I was so worried about how to keep him from running and jumping!). He has run low-grade fevers on and off for several days and still had one on Friday night. We were concerned because his fever went up to 101.4 on Wednesday night and Thursday morning. I talked to the MUSC Ped. Cardiology Fellow twice and if it had continued, we would have carted him off to the doctor for some blood work to make sure there was no infection. Praise God, it never went that high again. The doctor said the dye they used during the cath can cause fever and the coils they placed also cause an auto-immune response. Hopefully we are past all that now. God answers prayer!

Zach's CHD journey

I have yet to officially document Zach's CHD journey. One day, he will be able to sit still long enough to contemplate all that he has been through, so I wanted to write out his story...

Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...

Our family a few hours after Zach's birth --- before we knew there was a problem...

At the small county hospital where they took Nora and Zach after she delivered him at home (not on purpose! Read this post.), Nora signed the papers the night he was born surrendering her parental rights. The next morning, we talked to the doctor about circumcision. He said he would have to determine if they could even do it that day with only the weekend crew on hand. They decided to do it after all, so I decided to get my shower while they took him down the hall for the short procedure. Long after my hair was dried and my makeup on, they still had not brought him back to us.

After about 1.5 hours, the doctor returned with a grave look on his face. I remember the next few minutes as if they happened in slow motion. He sat down and said that they found a problem with Zach's heart. His blood oxygen levels were low (a testimony for the need for pulse oximetry on newborns!) and so they took him to their small NICU. They did an echo and said there appeared to be a problem with his aorta, but that they were not equipped to handle such issues. They had contacted doctors at the Medical College of Georgia in Augusta and were preparing him for transport there since it was only about an hour's drive from where we were.

Our daughter, Rebecca, 8 years old at the time, had spent the night with some friends that lived in town. When they arrived with her that morning, we had to tell her that she couldn't see Zach and that we needed to take him to another hospital. She cried so pitifully. I know she had to have been so scared. She had prayed for years for a baby brother or sister and I can only imagine how her little heart was breaking. Fortunately, Nana Cherryl and Papa DR had arrived and were there to take Rebecca home with them. They were a godsend during the next week as they did everything they could to help her have a "normal" week.

They allowed Bill and I to go back and see Zach in the NICU before they transported him. They had him on the respirator in case he should crash during the trip and he was so miserable. He was fully awake and fighting that tube for all he was worth. I imagine that they could not give him anything to calm him down without knowing if he could tolerate it. Poor Nana Cherryl had to see him for the first time that way! I remember standing there, feeling so helpless, not knowing what to do for our little boy.

Finally, they were ready to take him but we were not allowed to travel with him or even follow the ambulance. We jumped in our van for the hour-long trip to Augusta. We had no idea what we were driving into. Or even if our baby would be alive when we got there. We tried to talk but we didn't know what to say and neither of us wanted to discuss the possibilities. I remember leaning my head on the cool window watching the countryside go by and trying desperately to make sense of what was happening.

When we arrived at MCG, we checked in and dealt with the confusion of this Hispanic baby with no name except Baby ____ (Nora's last name, which I won't reveal here). I know that when our biological daughter, Rebecca, was born, we filled out the birth certificate not long afterward and signed it as her parents. Well, all that was complicated by the circumstances --- the adoption and the medical emergency --- I don't even know if a birth certificate existed at that point, and if it did, it surely did not have our names on it. We showed copies of the papers that Nora had signed and eventually got our lawyer to fax us some papers that provided proof that we were, in fact, in the process of adopting this little patient.

The next hours and days were filled with tests and enough medical terminology to make our heads spin. As we tried to ask the doctors and nurses questions, we found ourselves using words like "thingy" and "whatchamacallit". They would smile and give us the correct technical term before answering our questions. One question we had was if our little boy stood a chance of having a normal life. Our daughter, Rebecca, had just gotten a Slip 'n Slide, so that was her question --- would Zach be able Slip 'n Slide with her in the back yard? They assured us that it was their goal for Zach to be able to run and play like any other child --- and be able to Slip 'n Slide with his big sister. I think they hit the nail on the head...

They had to allow for Zach's newborn body to go through all the changes that newborns normally go through before they could get a definitive diagnosis. After several days and several echos, they determined that Zach has 3 defects. One of his defects is Transposition of the Great Arteries. The aorta and pulmonary artery are switched and enter the heart at opposite points from where they should; that is why the doctor at the small hospital thought there was a problem with the aorta. The problem they actually saw, Zach's second defect, was a partial blockage or stenosis of the pulmonary valve. This stenosis meant that Zach was not getting enough blood to his lungs to be reoxygenated. Zach's third and most serious defect is called single ventricle. Whereas the normal heart has 4 chambers, Zach essentially only has 3 chambers. His right ventricle is there but undeveloped and inoperative. His left ventricle is responsible for pumping blood to the lungs and the body, so it is doing double duty. There is a really good explanation of this type of defect here.

Eventually, they determined that Zach was stable enough and that his oxygen saturation levels were good enough, in the mid 80's, for him to go home and grow. He was eating, but boy was that hard work for his little body. I never realized how much of a workout it is for a baby to drink a bottle! All the sucking and swallowing and breathing... for a heart baby, it is just about too much! Nonetheless, we took him home, though we were scared to death.

I took him for his first followup appointment back in Augusta 2 weeks later. Bill was not able to go, so I took Nana Cherryl with me, thank goodness. Zach had been eating pretty well and he seemed to be doing well. The pulse oximeter told a different story. 65. Yikes. I guess because of Zach's dark skin, we couldn't tell that he was so cyanotic. The doctor said it was time to schedule his first surgery and sent us home. If we were scared to take him home with sats in the 80's you can imagine how I felt that day taking him home at 65. Oh, mercy!

We returned to Augusta early the next week for pre-op and the BT Shunt on May 23, 2006. It was so hard to hand him over to the nurse. Of course, he didn't know one set of arms from the other. He just slept on. It was even harder to see him after he came out of surgery. He was so swollen and with all the tubes and wires and IV's... It about broke my heart.

The doctor that did his surgery went in under Zach's right arm. I always thought was a good thing because the scar would be hidden. Then I realized that he would need 2 more surgeries through the chest. Oh, well. Battle scars.

Over the next few days, he improved and was eventually moved out onto the floor. He continued to have stridor, or wheezing when he breathed or sucked the bottle. They said his vocal cords were probably traumatized during in- and/or ex-tubation and that it should get better, but it continued. So, they did a swallow study and determined that he had reflux. He was not a spitter, but everything he ate was coming up and sitting there around his vocal cords, keeping them irritated. They prescribed Zantac for the reflux, lasix for fluid, and baby aspirin and sent us home.

We followed up at Augusta after surgery, but found that the long drive was impractical with such a little baby, so we arranged to see a local pediatric cardiologist. We fell in love with Dr. Raunikar! He is a wonderful Christian doctor. He was fully willing to work with the doctors from MCG to coordinate Zach's care, but we eventually felt led to check out MUSC in Charleston, SC. It is about twice as far to go, but their program is so much bigger and more specialized. They also network with Dr. Raunikar's group. Zach's surgeon, Dr. Bradley is tops in the field and we owe him so much.

We made the switch to MUSC and Zach had a heart cath in December 2006 and Glenn surgery there in January 2007. I have to say that it was even harder than the first time to hand Zach over to the nurse on the morning of his surgery. Unlike when he was only 3 weeks old, he had developed a personality and a smile that could light up a room. We knew what it felt like to have his little arms around our necks and feel his super-wet kisses on our cheeks. It didn't help that he clung to us and cried.

So now, we await the next surgery, the Fontan. Currently, Zach is right at 31 lbs. I am waiting for his next big growth spurt. Dr. Raunikar says he should be big enough by this summer. We expect to have a cath done in April that will help the doctors determine a good timeline.

Looking back, I marvel at the hand of God on Zach's life. God led Nora to put him up for adoption. If Nora had kept him, who knows what would have happened? She probably would not have had him circumcised, so I don't know if they would have found the problem before releasing them to go home. 45 minutes away from any hospital. Nora or her mother unable to drive. Swaddling his body in layer upon layer of thick blankets, as is their custom. If they had found the problem and sent him to Augusta, how would Nora have gotten there? How would she have navigated the language barrier? Where would she have stayed and who would have paid for it? Would she have lost her job as she stayed by her baby's side? How would she have gotten him the care that he needed? I know without a shadow of a doubt that God had a plan...

As I watch Zach play every day, I remember our little baby in the NICU, fighting for his life. As he does all the typical boy stuff --- wild and rough and tumble and sometimes violent --- I remember that we stood around that little bassinette wondering what type of life this little one would have. When I get irritated at his contant rambling (too often, I admit), I remember watching him struggle against a tube in his throat after surgery, unable to make a sound. I praise God for giving us the privilege of being Zach's parents. The hurdles that he has overcome are a testimony to God's strong and merciful hand on his life and we feel blessed to have experienced it with Zach. He is our little Superhero!

This is how we see Zach nowadays... as a blur!