in Recovery

a quick update on our Little Man...

It's been almost 6 months since his heart surgery... and our Little Man is doing great! He is active, growing, in constant motion and he is ALWAYS making us laugh. In fact, he is quite a handful to keep up with sometimes since his favorite game is chase, which he usually gets me to play by crawling/walking into a part of the house that he knows is off-limits. Then, as soon as I start to follow him, he laughs hysterically then crawls as fast as he possibly can in the opposite direction! 

His heart surgery was a complete success! He was supposed to have a few different follow-ups in the months following his surgery, but after his first one, the cardiologist said he was doing so well that they cancelled the rest of the appointments and said, "We don't need to see you until next year." Woohoo!! 

It's been amazing to see the transformation... when I thought he looked so good and so healthy in the few weeks before his surgery, it's been quite eye-opening to go back and look at the difference in before and after pictures.

One week after...

One week before...

He had definitely chunked up before... but his height! As soon as they fixed his heart, he started to spread out and shoot up! His Daddy is tall so we always expected a little something more but oh my goodness! At this point, he still has my short legs, but his 12 month shirts no longer fit his long arms or his broad shoulders. And people at church who haven't seen him in awhile always comment, "This can't be the same little guy!" We feel very blessed, and this Thanksgiving, we have marveled at where he was last year and where he is now. We are truly Thankful for the health and heart of our Little Man. 

in the Still of the Night

I used to think "Night Duty" was the absolute worst thing about being a parent. But 2 things have changed my mind... my Mom and my son.

In our family, my first three siblings and I had the amazing and unique opportunity to watch our parents become "new" parents. My youngest sister, W, was adopted well after the rest of us had left the nest. And she was adopted at an age where my parents missed her infant years. But my Mom still pulled "night duty" with her.  Even though she is now 18 and is well on her way to becoming just as mature and grown up as the rest of us (ahem), she was still a normal teenager. Whenever Mom was up in the middle of the night because of W's terrible "teenagery" things like cast parties, school dances and Youth Group overnights, I never heard her complain. She would always say, "I didn't get to be up with W in the middle of the night when she was a baby. So I have the privilege of doing it now."

The second thing that is changing my mind about night duty is this hospital stay... It's kind of like being new parents again. The first night in the ICU, he was taking 2 ounces of formula every two hours. The second night, in the step-down unit, a nurse would come in every 3 or 4 hours to take vitals, draw blood, give pain medicine or adjust his oxygen tube. and each time, D would cry out. It's not the sweet, high-pitched, desperate cry of a newborn. It's a pitiful wail, full of confusion, breath and "Mama Mama."

He says "Mama" when he's happy, babbles it when working his legs in his excersaucer, sings it out over the baby monitor while he wildly flaps in his crib. But he also weeps it as he is poked and tested and re-bandaged. Every time the hospital room door handle "kathunks" and a nurse walks in, I am up holding his hand, wiping his crocodile tears, calling him my Big Brave Boy. (M is with me and, of course, he does his Daddy Duty... like carrying D to get a chest x-ray at 5:00 every morning.)

Our first day in the step down unit, 24 hours after surgery, was a rough one as the effects of anesthesia had started to take a toll; and that first night was a busy one... nurses, vitals, alarms, heart monitors, pulse ox traces. It was in the wee small hours of the morning, D's pain meds were starting to wane and he had pulled out another IV... and he cried, "Mama. Mama." I opened my aching eyes, groaned my way off the vinyl couch, tried not to fall over my husband sleeping on the trundle bed, and stumbled over the cold floor to look over the side of the crib... "Mama's here, Baby."

and he smiled.
not an, "I just got out of surgery so I'll give you a tight lipped sign of recognition" smile.
a real smile.
a D smile.

The smile that has made pouting, old men in the grocery store stop what they are doing and lean down to make silly faces into the stroller. The smile that has made a crying woman at the pharmacy say, "You just made my day," while managing a wobbly smile. The smile that made the nurses on our floor practically kick me out of the room this morning to go have breakfast so they could finally get some cuddles from him while they showed him off at the nurses' station.

and that first smile was all for me.
because I'm the mama and I was on Night Duty.

in the Waiting Room, part 2

There are things that should make you cry... a funeral, a broken arm, Saving Private Ryan.

and then there are things that shouldn't make you cry... changing a dirty diaper, dishes, people talking at a graduation ceremony. And yet, all three of these things have sent me over the edge these past two weeks, weeping for hours. It's fairly obvious that I am stressed out about D's surgery... and since it's only two days away, the stress levels are skyrocketing.

So, we left the house. We started the dishwasher, put another load in the washing machine, and Little Man and I escaped to a coffee shop. I'm drinking a smoothie and he's smiling at me. Right now, I don't care that we're missing an afternoon nap. I don't care that my house needs vacuuming and that the cat is probably plotting revenge on our entire family since we left her alone... again... after being gone all weekend. Sometimes you just have to run away.

My Little Man, smiling at Garden Cafe. 

We're two days away from surgery... less than 48 hours... so our fear is increasing and our stress levels are soaring. Last Friday, we met with the surgeon and he seems competent and confident. We met with nurses who assured us that on the scale of 1 to Oh Dear God!, D's heart surgery is right in between life-threatening and oh-he'll-grow-out-of-it. So he's more serious than not serious and not as serious as super serious.

So we pray. and we pray. and we pray some more. And we want God to reassure us, to tell us why, to promise us that D will be okay. But He doesn't. We ask God to give us a glimpse of D's future, to explain His purposes, to tell us how He will use this. But He won't. We pray for God to heal, to restore proper pulse ox levels, to give surprising reports from the doctors. But He hasn't.

When D has appointments, we always dress him in shirts that say,
"Mommy's Little Hero," "Daddy's All-star," "Little Champ," etc.  

He has shown us that He hears us. M and I pray for D every night before bed. We've prayed for God to heal him from "the top of his head to the bottom of his feet." We've prayed for God to "cover him with the breastplate of righteousness." and we sing "Jesus loves me... little ones to Him belong, they are weak but He is strong." When we've taken him forward for prayer at church, people have asked God to heal D from "the top of his head to the bottom of his feet, " to "cover him with the breastplate of righteousness" and they've asked us to sing Jesus Loves Me over him. Each of those moments has felt like Jesus saying, "I hear you. I am with you every night when you pray over D."

and God has healed a part of D's heart... he used to have a hole between the upper chambers of his heart. It has closed which has given the surgeon the option of rerouting the left superior vena cava externally. (In his words, "if God gives you a tunnel, you use it. But if he hasn't, then it's better not to make one.")

and God has shown us one good thing that has already come from this... I can't say too much, you'll just have to ask my sister. ;)

But when we ask God why He didn't complete the healing, or why D has had to suffer to bring good things to other people, or why all of this had to happen in the first place; God says "I'm building D's testimony. It's his story. I hear you and I'm with you. That's enough."

and we're trying to let it be. Since the day David was born, we have prayed that God would use him to build His kingdom. But that's scary because we don't get to specify how or when or where. We don't get to specify the terms of D's life... and God never promises us safety... only that He will be with us.

 So I'm scared for Thursday... we love our Little Man so much that's it's hard to think about the possibility of losing him. And it would be much easier if we had a faith that believed that God only let good things happen to His children. But we don't. and He doesn't. So we will trust God when He says "I hear you and I am with you" and we will continue to believe that God is diligent in His goodness, in spite of our fear.

in the Waiting Room

it's finally time... time to schedule the surgery... time to write about D's heart condition... time to let people know the details of what has been/will be happening.

See the little heart sticker on his chest? That's an EKG lead. 

24 hours after D was born, he failed his newborn heart screening so he had to spend a whole day in the NICU. His pulse ox (oxygen saturation) level was less than 90%. (It's supposed to be 98-100%.) But nobody could figure out why. He stumped all the doctors... he passed every other test... he wasn't showing signs of oxygen distress (turning blue, coughing)... but he just couldn't pass that pulse ox screen. Finally, they had an ultrasound tech come over from Children's to give him an EKG... and she was very surprised by what she found... D has two superior vena cava.

A normal heart looks like this...

All the blood from the body dumps into the Right side, then goes to the lungs where it picks up oxygen, then gets dumped back into the left side where it gets pumped to the rest of the body. 

D's heart looks like this...

D has an extra Superior Vena Cava that carries blood from his head and left arm to his heart. It attaches to the Left atrium so it immediately gets pumped back out to his body, bypassing the lungs.

Since he has a small percentage of his blood that dumps into the left side of his heart, that blood never gets pumped to the lungs, so never picks up the oxygen it needs. As a result, D's heart is pumping a mixture of oxygenated and deoxygenated blood to his body. The result? A low pulse ox number. (Yes, M. and I have needed to recall all of our biology lectures concerning the circulatory system of the human body. In fact, the day that this was diagnosed my friend L. had come to the hospital to visit us and meet D. She has a background in and used to teach human anatomy. I don't know if I will ever be able to explain to her the comfort that it was having her there to help explain some of these terms when we first started hearing them. Thank you, L!)

At first, we celebrated because the pediatrician in the hospital so "no worries, it won't effect him, he's fine. But maybe follow up with a cardiologist just in case." A week later, the cardiologist said, "Um, yeah... we're pretty sure this is going to be a problem." and a one hour follow up appointment became a four hour ordeal that involved D being strapped to a table with an echocardiogram and an IV that didn't work right away. (Thank goodness my mom was up to help with the baby and my recovery... when we got home from the appointment, I lost it... she grabbed the baby and M. grabbed me.)

So first, the good news... D is a ground-breaker and history maker! The cardiologist was only "pretty sure" this would be a problem because there is "no history/record of anyone ever having this problem ever before in the history of the whole US." In fact, when M and I looked it up, there are medical journals which include this Double Superior Vena Cava issue occurring in tandem with many other heart problems (usually a complete right/left reversal) but they specifically state "there is no evidence that this problem (two vena cava) occurs in isolation." Now they have evidence... which means they want to publish the case for medical journals... which means he sees the same ultrasound tech every time, the same cardiologist and nurses every time, and they have consulted with a team of top surgeons to determine the best path for D's surgery. (good news!)

More good news... It's also quite a blessing that D didn't have any of the other very serious heart conditions that usually accompany this issue. (M feels that it's like the first chapter of Job when Satan comes to God and says, "Let me strike Job" and God says "This far, but no farther.")

Family time right before D's hernia surgery.

The "feels-not-so-good-but-still-trying-to-trust-the-goodness-of-God" news... D's pulse ox will get lower as he gets bigger and his heart needs to pump more blood. This will become a problem if he ever wants to do anything like, you know, run around and play. If his body can't get enough oxygen, he will pass out. If his brain can't get enough oxygen, he will have a stroke. (There is a small percentage of both of these possibilities happening now; but because he is little and his play-time encompasses mostly rolling over, it's not as serious now as it will be in the future.) This means that his heart will have to be fixed.

Because D is growing well, and shows all signs of good, normal health, his doctors think it's a great time for surgery. They are also considering the fact that his recovery won't take as long now because his body repairs itself so quickly and he will want to move and play as soon as possible so he won't be limited by the "I just had surgery mindset." Plus, since the newborn hole between his right and left aorta has closed, there is now a possibility that they won't have to stop his heart to do the surgery...

Surgery options: The doctors want to clip the LEFT vena cava and attach it to the right side of his heart. They can do this one of two ways...
       1. Clip the vein, run it under the "Aorta" arch (see picture above) and attach it to the RIGHT vena cava. Pros: they won't have to stop his heart and put him on bypass (yes, please!!). Cons: The veins have to be in close proximity for there to be enough material to stretch and attach.
       2. Leave the LEFT vena cava attached to the left side of the heart, create a new hole between the two atria, create a shunt/tunnel/path from the vena cava to the RIGHT atrium to reroute the blood. Pros: the size of D's heart and chest won't matter. Cons: They will have to stop his heart and put him on bypass for this surgery (what? did you say stop my 6 month olds heart? Excuse me, I have to sit down while you repeat that.)

The tricky part? They won't know which procedure they will need to do until the day of surgery. As my husband says, "It will be a game day call."

So that's what where we've been for six months and where we'll be going in six weeks. Surgery is scheduled for May 29th. We still pray everyday for healing, we still hope every moment that God will intervene and we won't have to face an operating room, and we still pray everyday for the strength to trust God's heart and purposes for our Little Man... even if that means we have to hand him over to a surgical team.

Three weeks ago... Another trip to the Cardiology wing at Children's for a sedated echocardiogram. 

*I had wanted to write more about how our family is processing all of this, but it turned out to be a lot of facts and figures and now my Little Man is singing over the monitor, ready to get up from his nap. I'll try to post again over the next few days, answering the question, "So really, how are you feeeeeeling?" Right now, I'm just going to go hug my smiley baby.