Diagnosis

Since it's CHD awareness month and lots of my fellow heart mamas have been sharing parts of their heart warriors' stories, I figured it was time to actually sit down and write out some more of ours too. I've written about David's birth story here, so next comes his diagnosis story...

One of the last pictures I took of David before we
knew anything was wrong.

David was less than 24 hours old. Because I hated being in the hospital (little did I know what the next year would hold in that respect!), we were preparing to be discharged that night after an uncomplicated and quick delivery so that we could go home and start our life together as a family of five. We just needed to have the pediatrician stop in and check him out, have his hearing tested, and get our discharge papers, and we’d be out of there. Normal, routine, check-the-box kind of stuff. Getting checked by the pediatrician had always been basically a formality before, and I 100% expected it to be like that again.







During the exam, the pediatrician told us our son had a “pretty serious heart murmur.” She didn’t seem overly concerned and told us that lots of babies have heart murmurs at birth, and they most often resolve themselves. I wasn’t worried. I told myself, “Of course that’s all it is. It’s minor, common, nothing to worry about.” She ordered an echocardiogram to check things out, and we were told it would take about 15-20 minutes.

Almost an hour later and our baby was still gone for the test. I laughed nervously to Bryan, “Should we be worried?” I texted a nurse friend of mine and she said the same thing: fairly common, most likely nothing to worry about. She was surprised they even ordered an echo and didn’t just wait to monitor it later. So it was probably just taking so long because he was wiggly or something. Nothing to worry about.

After a while, my midwife came by to check on me one final time before I was discharged. As she opened the door and started to walk in, someone called her name, and she disappeared back out the door. I don’t know if it was the tone of their voice, or the look on my midwife’s face, or what, but that’s when I first knew. I didn’t know what, but I knew something wasn’t right. A couple very long minutes later, she came back in, this time with the pediatrician. I will always remember the looks on their faces. I don’t remember exactly what they said, who first started talking, who explained what. But they told us that our David had a heart defect called Tetralogy of Fallot, and that he would need open heart surgery. They didn’t see this much at this smaller hospital, but he would be transferred to Children’s downtown to be monitored and assessed. I nodded seriously and listened wide eyed, trying to take it all in. And then at one point I just burst into tears because it was just too much.

David in the Isolette

I had planned on being home for dinner that night, snuggling all three of my babies, sleeping in my own bed. But instead, our new baby would be loaded into a contraption that looked like it belonged in a sci-fi movie, and transported to Children’s Hospital by ambulance.

It was so surreal seeing them get him all set up for the ride. There had been zero indication that anything was wrong. Even our nurses were shocked. It seemed so strange that my calm, content, pink, nursing-like-a-champ baby had to be whisked off in such serious fashion.

Bryan and I trailed the ambulance in our car, crying most of the way. I frantically Googled “Tetralogy of Fallot,” and was simultaneously reassured to read that Shaun White was born with the same heart defect (an Olympic athlete—that had to be a good sign, right?), and terrified to read about the potential prognosis and complications.

Suddenly, without warning, we had been plunged into an entire new world of parenting that we had not signed up for. Of course I knew that we would do everything we could to support our little guy and give him the best outcome possible.  And instead of letting that scary moment define and discourage me, I was and am determined to make sure that he knows he is special, he is a fighter, and he has a story that God can and will use inspire others. I would never have chosen this for any child of mine, but I am so proud to be the mama of a heart warrior.

Tomorrow.

After five months of knowing it was coming, and a six weeks of having the date on the calendar, I can't believe that David's surgery is TOMORROW. It is actually here. It's felt so far away for so long, that it feels surreal to think that we'll be getting up around 4:30 tomorrow and getting ready to head downtown and hand our baby over for surgery.

I spent most of the last five months trying not to really think about it. It was pretty easy, since David seems like a normal, healthy baby--aside from the crazy eating schedule, which I have just gotten used to and don't really think about anymore. Even all the nurses we've seen over the past months have always commented on how he doesn't look "sick" at all, and how you'd never know about his heart unless you listened.

Today is the last day I will hear the "whoosh" of his heart murmur when I hold him in a quiet room. Starting tomorrow it will be a while before I hold him again in a quiet room at all.

They told us that they have seven and a half hours set aside for David's surgery. (His case is a little more complicated than just a regular Tetralogy of Fallot repair, since he is also missing his pulmonary valve and needs to have that fixed, along with the size of his enlarged pulmonary arteries needing to be reduced, which I imagine is tricky work as well.) That seven and a half hours is not including the 30-90 minutes that it will take initially to get anesthesia going and set the many lines that will be needed for the surgery and the days after. That is a LONG time to wait. That's longer than any of my labors! And honestly, I think I'd rather be going through labor again than waiting 8 hours to hear that everything went well and our baby is out of surgery. What are we even going to do during all that time? I can't even imagine.

Today I'm keeping busy cleaning, grocery shopping for the kids' meals while we're gone, doing laundry, and packing. I'm thankful for our weeklong stay in the Cardiovascular unit in May because I was able to compile a list of things that I wished I could have packed, had I known it was going to be a weeklong stay and not just an overnight one. Although I know the next few days are going to be like nothing we've ever experienced before, I'm thankful that at least I know a long stay is coming this time, and that it will be in a place that now feels familiar to me.

And most of all, I'm snuggling our little chunky, precious boy, praying over him, kissing him, and dreaming of the day when this is behind us and we are once again home as a family of five, just hanging out on a Sunday afternoon.

What I keep coming back to is the sure knowledge that God gave us David. As the verse says that hangs above his crib, I prayed for this child, and God heard my prayer. God has David's days all written already, and has big plans for him. He holds David in His hands, and holds us all in His hands during this scary time.

When we were in the NICU, my cousin posted the words to "He's Got the Whole World in His Hands" on my facebook wall, with David's name written in. It brought me to tears then, and still does every time I sing it to David as I rock him:

He's got the whole world in His hands

He's got the whole world in His hands

He's got the whole world in His hands

He's got the whole world in His hands

He's got itty bitty David in His hands

He's got itty bitty David in His hands

He's got itty bitty David in His hands

He's got the whole world in His hands

When Oceans Rise

In the past year or so, you pretty much haven't been able to go to a church service or listen to a Christian radio station without hearing the Hillsong song Oceans. I have heard and sung it countless times. I even helped lead worship to this song at our church while I was pregnant with David, so that meant lots of listening to it beforehand to make sure I really knew it. The kids started recognizing it and yell out, "Oceans!" every time they hear the first few seconds of it start on the radio.

Whenever I heard or sang it, I appreciated it as a beautiful song. But honestly, it never reached me deeply. When I first heard and learned it, I was pregnant with my third baby, the one I had prayed for. I was having another easy, routine pregnancy. Life was good. When I sang Oceans, I sort of just felt like it just didn't apply to me right now. Things were going smoothly and just kind of flowing along.

Last week while I was driving, Oceans came on the radio. It was the first time I had heard it in a while...or maybe just the first time I really listened to it in a while. Instantly, the tears started to fall. 

Spirit lead me where my trust is without borders
Let me walk upon the waters, wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger in the presence of my Savior
And I will call upon Your name, and keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine

Ever since that moment when we were sitting in the hospital room with our day-old baby, ready to be discharged as soon as he got his hearing test done and they told us that the results of the "just in case" echocardiagram looked just fine, and the pediatrician and midwife walked into the room with that look on their faces and started to talk, this song suddenly became very applicable to my life.

First of all, David is such an incredible blessing. I am so thankful that his heart defect is something that can be repaired and that he should live a completely full, normal life. I know that there are many others who deal with much more life-altering, stressful, and serious things.

But this journey has been, and continues to be, difficult and scary. Trying to balance the needs of two young kids and a baby who nurses nearly ever hour is hard. I have often felt like I'm not the mom I want to be for Joshua and Annika because I'm so consumed with David's needs, stressed about keeping him healthy, and short on patience. Recently, our days have been even more full with doing David's breathing treatments to get rid of his wheeze before surgery, and PT for his neck muscles to stretch them out so that hopefully the flat spot on his head doesn't get worse, especially with recovery from surgery coming up.

And then there is anticipating the surgery itself. First, there are the "what ifs". But even without those scary thoughts that pop up in the moments when I'm letting my worries run wild, there are the certainties, and those are scary enough. There is the certainty that I will have to hand my baby over for surgery. The certainty that his little chest and heart will be opened up. The certainty that he will be in pain after surgery. The certainty that I will be unable to pick him up and comfort him for a while after surgery, and I will have to just stand back and see him just lying there hooked up to all of those machines that make strange noises and do things I don't even want to think about.

With surgery so close, I have been struggling so much with just trusting God and not letting the stress and worry take over. So when that song came on for about the millionth time this week, this time it hit me straight in the heart and soul.

Spirit lead me where my trust is without borders
Let me walk upon the waters, wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger in the presence of my Savior
And I will call upon Your name, and keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine

We never would have chosen this for our baby, but I know that God is with us. He is leading, and He will keep me from being lost under the waves of uncertainty. With eyes on Him, I can rise above, be strengthened, and even find rest in the midst of everything going on around me and within me. Through this whole experience, I know that our faith is being strengthened, and I continue to pray that this experience isn't only used to draw us closer to Him, but others as well.

David's Birth Story

I figured there might be a few people interested in reading David's birth story.  After all the craziness that happened so soon after he was born, it was fun to think back on how everything started while writing this. :)

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Just before I reached 36 weeks this time, I had an evening and morning when I had regular, non-painful contractions.  The only time I’d ever experienced that with the previous two was the day that I had gone into labor, so it freaked meout a little.  I was really hoping this baby wouldn’t come even earlier than Annika did, since I felt like 37 weeks had been plenty early!  That week, I made sure that everything was ready to go, just in case.  At my 36 week appointment a few days later, I found out that I was already at a 3. I knew it didn’t necessarily mean anything, but figured we should makes sure we were really ready just in case.  My midwife said it was no indication of when labor would start, but it did probably mean that things would happen pretty quickly when the time came.

Then, the night before I hit 38 weeks, I started having the same kind of non-painful contractions that averaged about 6 minutes apart.  I decided to go to bed and get some rest, just in case!  I fell asleep after a little while, and was woken up two or three more times in the next few hours.  The last time, the contractions seemed to be spreading out, but were actually becoming a little painful.  At this point, I was almost sure it this was it…and then I woke up in the morning, still pregnant!  I had a few not very strong contractions here and there throughout the morning. I had my 38 week checkup that day, and I was at a 4.  My midwife told me that she was on call for the next five days, but today was the day she also had appointments scheduled and so was sort of double-booked, so she joked that I should wait until at least the end of the day to go into labor.

On the way home from my appointment, I had a few slightly stronger contractions, but they were still about 15 minutes apart, and not very painful.  I started to worry that if I DID go into labor that day, I wouldn’t know when to call Bryan home from work. Since he works in the opposite direction of the hospital, I was worried that I would call him home thinking I was in labor and then nothing would happen, or I would go into labor, figure out what to do with the kids, have to rush to the hospital, and then Bryan wouldn’t have time to get to the hospital before the baby was born.  All day long my contractions continued, but they were 15-20 minutes apart and didn’t seem to be getting very strong.  Then in the afternoon they died off altogether for a while.  I started to give up on the idea that I was actually going into labor and figured it was just weird third pregnancy pre-labor stuff.

Just minutes after Bryan walked in the door after work alittle after 5, I had a contraction that was noticeably stronger, and I remember thinking, “That felt different!”  (Apparently my body was just waiting until Bryan got home and I didn’t have to worry about him making it for the labor! :))  Throughout dinner I had a few more.  They were still about 10 minutes apart and starting to be painful. I had to stop and concentrate for a few.  As Bryan played with the kids after dinner and we got them ready for bed around 7, they continued. They were slightly stronger and about 8 minutes apart at that point, but I still wasn’t totally convinced anything was actually going to happen this time.  After we got the kids to bed, they were definitely becoming more painful and quickly began to come about 6 minutes apart.  I sat there for a while waiting to make sure they would continue, wondering if this was really itand we should call our neighbor over to sit with the kids.  When it was clear that they were very regular at 6 minutes apart and I couldn’t do anything but sit and handle the pain when it came, we decided to call Nancy.  As soon as we called her, the pain got to the point where itwas absolutely unmistakable that this was “it”, and then suddenly they were only 3-4 minutes apart.

All the way to the hospital they continued like that (and once again, let me just say that having contractions in the car is the WORST).  We pulled up to the hospital around 8:15. I got in a wheelchair because there was no way I was walking anywhere at that point.  When we got upstairs, they took us into the same room that we were in when Annika was born.  They got the monitor on and checked me, and I was at a 7-8.  The contractions continued to be terrible, and all I could do was make weird noises/hum/sing through them.  I remember thinking it was probably awkward for everyone in the room to just sit there and listen to it and wait, haha, but obviously I didn’t really care at that point.  Just before 9:00, the midwife asked if I felt the urge to push. I have still never felt this urge, so I’m not sure what I’m missing!  But, I was fully dilatedand so we decided that I would just start pushing.

After a little while, the baby’s heart rate was apparently dropping, so they gave me some oxygen and I could tell that suddenly the mood was different. My midwife told me it was time to get this baby out now, and I rememberhearing her ask the nurses who the OB on call was, which really freaked me out, because I didn’t want to end up with a c-section if I could help it!  After about 25 minutes of pushing, at 9:19 pm, David arrived with the cord around his neck!  I am so thankful that everything went quickly so that he was just fine and not under too much stress for too long.  As soon as he was born I asked, “What is it?”  (I’m sure there is a more eloquent way to ask this question, but at the moment it was not coming to me, haha.)  Bryan told me it was a boy!  I had been leaning toward thinking it was a boy for a while, and at that moment I remember it just felt “right” to know that we had another son.

I was able to just sit and hold him for a while right away.  Eventually, they took him to weigh him and I was surprised to see that he only weighed 6lbs 3oz, the smallest of all our babies.  I figured since Annika was a whole week earlier than he was, he would definitely be bigger, but nope.  Just a little peanut.  (Annika was 6lbs 11ozat 37 weeks, and Joshua was 7lbs 3oz at 38.5 weeks.)  Since this was our first baby that wasn’t born in the 3:00am hour, we could actually call our families and tell them the news right away!  It was so fun to not have to wait to share it with them.  Also because of the timing of his birth, I slept a little for the first time ever shortly after having a baby!  He was so peaceful during the night.  Right off the bat he was an awesome nurser and he barely made a peep in between feedings.

At some point I will probably write about our NICU experience too, so we can remember that part of the journey.  But now that all the craziness has died down, I wanted to go back and remember the birth experience of our third little one, David Samuel.  We love this little guy so much already and can’t wait to see what God does through his life and who he grows up to be!

When God Chooses a Name

About a year ago, I felt strongly that there was "supposed" to be a third child in our family. I had prayed for a long time that God would guide our hearts as we tried to discern His will for our family, and was waiting for His answer. One day, pretty impulsively, I just boldly prayed for a baby. (I honestly hadn't done that before just because I didn't know if it was just my desire that we have another child at that time, or God's.) Just a few weeks later, I found out that I was pregnant.

I believe that God heard my prayers for this child and granted my request. For that reason, we chose David's middle name, Samuel. Hannah prayed for a child, God granted her request, and she named him Samuel, which means "God has heard", and also, "God's heart".

I prayed for this child, and the Lord has granted me what I asked of Him. So now I give him to the Lord. For his whole life, he will be given over to the Lord.   - 1 Samuel 1:27

God heard our prayers, and hears our prayers now. And I believe He WILL hear our prayers and grant our requests for a successful surgery, and for David's life to be a testament to God's grace and power!

So we knew when we chose David's middle name that it had special meaning, but we didn't realize when we chose his first name how meaningful it would become as well. The main reason we chose the name David because we like strong, biblical names for boys, and because it is a family name on all sides: it is my mom's grandpa's and Bryan's grandpa's name, as well as my dad and his dad's middle name. But as I was journaling and praying over David recently, God brought to mind some passages that made me realize He had so much more meaning behind the name than we realized when we chose it. (And that maybe we weren't the ones who had chosen it after all!)

David prayed in Psalm 86, verse 11:

Teach me your way, Lord, that I may rely on your faithfulness.  Give me an undivided heart, that I may fear your name.

Very literally, our David already has an undivided heart. One of the marks of his defect is a hole in the dividing wall between the ventricles. That division will be repaired, but it is our prayer that as David grows to be the man God designed him to be, he would have the kind of undivided heart that David of the Bible prayed for: one that sought fully after God and followed in His ways.  We pray that he would be one who might be called a man after God's own heart, just as King David was.

"I have found David son of Jesse a man after my own heart; he will do everything I want him to do."    - Acts 13:22

As I continued to pray, another passage came to mind. When I was in elementary and middle school, I made several trips to summer Bible camp. One summer, the goal was to memorize Psalm 139. I did it, and I can still recite (almost all of) it to this day. I know, I know, impressive. ;) I just wish I could say this for more passages of scripture! But verses 13-16 came to mind:

For you created my inmost being; You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. My frame was not hidden from you in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Wow. Of all the times I have read or recited that passage, it never hit me as hard as it did that time. God knit David together--and he is wonderfully made. When David's heart formed and didn't quite form the way it should have, he was NOT hidden from God. It did not go unnoticed. God was there, He knows, and He already knew ALL of David's story and how He would use his heart and his life to His glory! I do not think God caused David's heart defect--we just live in an imperfect world--but I KNOW that He will redeem it and he will use it.

"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you. Plans to give you a hope and a future."    - Jeremiah 29:11

(I even have a song for this one from summer camp...too bad you can't hear me singing it right now! :))

If I have learned anything on my journey as a parent so far, it is that I can do nothing on my own. Everything good comes from God, and anything good or worthwhile in me is from Him, and due to no merit of my own. It has been a gradual process of God stripping away my pride and refining me, ever since I became a mother almost five years ago. I know that this next chapter of our story will bring beautiful things out of our lives, as we trust God and His strength in moving forward and He continues to draw us to Him. So finally, I'll share Hannah's prayer from 1 Samuel 2:1-4, after she had dedicated her son's life to the Lord:

My heart rejoices in the Lord; in the Lord my horn is lifted high. My mouth boasts over my enemies, for I delight in Your deliverance. There is no one Holy like the Lord; there is no one besides You. There is no rock like our God. Do not keep talking so proudly or let your mouth speak such arrogance, for the Lord is God who knows, and by Him deeds are weighed. The bows of the warrior are broken, but those who stumbled are armed with strength.