When ‘What If’ Happens, Part 3

This is part 3. Read part 1 here. Read part 2 here.

The next four months were a blur. Doctor visits, echocardiograms, more doctor visits, learning about his defect, a trip to Charlottesville to meet Henry’s heart surgeon and see the hospital, more learning, and trying to keep him away from germs. If he got sick within a month of his surgery date, we would have to postpone the surgery, but thankfully he stayed super healthy the entire time.

At the end of July we made the hour trip to Charlottesville for Henry’s open heart surgery. I will save the entire story of that experience for another post, as it is too much to include all here, but from beginning to end we were in awe of the Lord’s provision. From a rental house for us to stay in, to the doctors and nurses who cared for Henry, to having family there with us, to the day of the operation, to his recovery and then being discharged a day earlier than expected, we could not have asked for anything better.

Henry was a true warrior and champion through the entire process. I am so glad that babies don’t have long-term memory (I certainly don’t remember any of my early major surgeries!), but I look forward to telling him someday how strong and brave he was, how much he charmed the doctors and nurses, how quickly his sass and smile returned, and how proud we are of him.

When all of my ‘what if’ questions were merely hypothetical, it was easy to choose to trust the Lord, but now they had come true. They were no longer simply ‘what if’, they were now ‘I have’. I now have a baby with a birth defect. Ok. That happened. So, what do you do when your ‘what if’ becomes a reality?

4 Reflections on Walking Through ‘What If’

  • Have a ‘Person’. Our What If questions usually stem from places of vulnerability, from our deepest fears and insecurities. Our natural tendency when they become reality is to retreat and try to protect ourselves from more hurt. This is definitely true for me. When facing a hard time, however, you need to choose one person to be completely and utterly open with, whether it is a spouse, friend, counselor, parent, sibling, etc. Share all of your feelings honestly – the good, the bad, and the ugly. Allow your person in to your vulnerable places, share your hopes and fears about the situation. Stuffing emotions only causes more stress and greater anxiety, leading to isolation that can be detrimental to both your health and relationships.
  • Find Something to be Thankful About. As I learned more and more about Henry’s defect, Tetralogy of Fallot, it made me so thankful that he was born when he was. The defect was first noted hundreds of years ago, and then the term ‘Tetralogy’ was coined by Dr Fallot in 1888. It wasn’t until 1971 though that the first pediatric open heart surgery was attempted to correct a Tetralogy defect. Almost 100 years later. If Henry had been born even 60 years ago, he would not have lived past childhood. Even in the darkest moments, let me encourage you that there is at least one thing you can find to be thankful for. Maybe it is that you are not alone, or that the sun is shining, or you are still breathing, or for doctors with skills to heal, or someone bringing you a meal. Choose to position your heart towards gratitude. It makes a huge difference in the experience you will have walking through the trial.
  • Acknowledge the Hard. Being thankful does not mean ignoring the reality of the situation. Recognize the stresses that you are under; physical, mental, emotional, and relational. Give yourself time and space to process what is happening, to work through your own emotions, to be in the present moment, to grieve when needed. Extend grace to yourself and to those around you (This is soooo hard for me sometimes, but I’ve worked on it a lot this year and am getting better!). Know your limits – ask for help if needed, say no to things that will be overwhelming, make space for this new thing, even if it means getting rid of some old things or adjusting areas of your life. If you try to ignore this ‘what if’ or press on as you were before, there is a very good chance you will wind up burned out.
  • Make Time to Laugh. One of the things I love and appreciate most about my husband is his ability to find something to make me laugh when I am overwhelmed. My tendency is to put my head down and just press forward, working as hard as I can, quickly and easily losing sight of the joy of life. In the midst of the heavy stresses we were carrying, we made it a priority to take breaks and do something fun. Find something you love and make time for it. Go on a date, watch a movie, go for a walk, tell each other ridiculous jokes, walk around the mall. Do something that has nothing to do with what you are facing. Always remember that this is a season (and the longer the season lasts, the more important this point is), and it will not stay exactly like this forever. It won’t. I promise.

One of the greatest sources of encouragement for us was through the songs on JJ Heller’s lullaby album, I Dream of You. We play it usually at least once a day in our house, even now. Her song “The Sun will Rise” got me through many long, tear-filled nights and hard days. The chorus goes like this:

Sometimes it feels like forever, when it’s dark outside. Baby the sun will rise; Baby the sun will rise; However long the night. 

No matter how long the night lasts, the sun will rise. It always does. We may not see it right away. We may not see it until eternity. We live in a broken, fallen world that is full of heartache and hurt, but we have a Savior who meets us in the broken places, who gives peace and rest in the midst of hurt, and who promises an eternal home that is magnificently free of pain and sorrow!

If you made it this far, thanks for joining me on this three-part journey. If you are going through your own difficult journey, I hope you find some encouragement here. Know that you are not alone. It would be a privilege to pray for you as you walk through it  – you can leave a comment or send me a message.


When ‘What If’ Happens, Part 2

This is part 2 of the story. Read part 1 here.

The long-awaited day finally arrived – it was time to meet our son! My due date had come and gone 10 days earlier and this boy was running out of room. My labor started around noon, and twelve hours later my water broke. Twelve hours after that I was still in labor at the hospital, with my husband, midwife and doula by my side and both sets of parents in the waiting room. Ten more hours of labor later it was finally, finally time to push, and just after 11 pm, Henry took his first breath.

I’ve written this before, but it is still true: the moment he was born was breathtaking, the most beautiful experience I have ever had. Meeting this tiny, brand-new human who grew inside of me made all the waiting, the pains of pregnancy, and hours of labor immediately worth it. Christian and I were so in love from the first time we saw him.

Our parents had been troopers, waiting all day in the waiting area as visitors for other mamas came and went around them. Just after midnight it was their turn at last to come and meet Henry, and they were of course immediately smitten with him. As my mom was having her cuddle, she noted that his fingernails were really deep purple and that she had never seen that before. I said it was probably just from all the hours I was in labor, and that the doctors hadn’t mentioned anything about it, but I would ask them in the morning.

We made it up to our room on the maternity ward around 3am, and got a couple hours of sleep before the first doctor arrived. The pediatrician came in around 7, and briefly mentioned that she heard a heart murmmur. She said they would check again the next day and see if it was still there. I was so tired and so elated that our baby was here that it didn’t really register on that day. I barely remember her saying anything about it at all.

The next day, the pedatrician said he didn’t hear anything, but that we should go see our regular pediatrician the following day, just to be sure. So, the morning after we were discharged we bundled up and headed to see our doctor, hoping that it was nothing to be concerned about. Our pediatrician met Henry and listened to his heart, confirming that there was indeed a murmmur present. He told us that murmmurs are relatively common in newborns and often close up on their own. However, just to be safe, he referred us to a pediatric cardiologist for a full exam and testing, but encouraged us not to worry, that it would probably already be closed up by the time we had our appointment.

The earliest the pediatric cardiologist could get us in was the following Friday, almost two weeks after Henry had been born. I will never forget that morning. It was bright and sunny, and it was one of the first days I put on real clothes and did my hair and makeup. Christian’s mom was in town visiting us, and we told her that it would just be a quick check-up and then we would be home. We arrived early and sat in the waiting room, convinced that this was going to be a one-time visit.

We were called back, Henry was weighed and measured, and then our cardiologist came in and met us. He was so kind and gentle with Henry, and was immediately smitten with him as he also has a son with the same name. He told us that the heart murmmur was still there, and sent us down the hall for an echocardiogram. All I remember of that is it seemed to take so long. So many pictures, so many views of his heart, so many swipes of the wand up and down his tiny little chest. Once the tech finished, we were taken back to our exam room, where we waited again for a really long time.

By this point we knew there was something seriously wrong, and when our doctor came back in he gently and kindly told us the news: Henry was born with a congenital heart defect called Tetralogy of Fallot. It is actually four defects combined into one diagnosis, and the only cure is open heart surgery, usually done between 4-6 months of age. He drew us a diagram of the heart to show what was happening inside Henry, and what would need to be corrected during the surgery.

My ‘what if’ had happened after all.

I started crying, going through tissue after tissue after tissue because for some reason doctor offices always have the crappiest, thinnest tissues ever created. Seriously. Our doctor kept talking and I kept crying, so thankful that Christian was there to listen and catch what I was missing. I apologized for going through so many tissues, and his response was etched on my heart forever:

You are supposed to be crying. This is huge, life-changing news. It is completely normal to cry when you hear this kind of information about your new baby, and you can use as many tissues as you need. In fact, I always tell my residents that if they get to this point of the talk and the mom is not crying, they are not explaining it correctly.”

He gave us as much time as we needed to ask questions, then gave us all the pertinent details we needed to know, and reassured us that Henry was going to be fine, that the surgery would correct the issue and he would be better than ever. He was (and still is) one of the greatest gifts we were given in this process. We are so, so grateful that we were referred to him, and for the care he has shown for us over the last year.

We left the office in a daze, three and a half hours after our appointment began. We headed home overwhelmed, but ready to confront this new normal, this ‘what if’ that had come true.

Part 3 – Coming tomorrow!

When ‘What If?’ Happens, part 1

February is Heart Awareness Month and over the next few weeks I am going to share a little bit of our story of living with congenital heart defects.

This is part one.

When I was 16, I learned that due to my own congential birth defects (cleft lip & palate, an innocent heart murmmur, and a small-eye condition called micropthalmia) I had a slightly greater than 50% chance of having a baby with some form of a birth defect. As you can imagine, this was somewhat distressing news, especially for a girl who had dreamed of marriage and lots of babies for years.

That day the first ‘what if?’ question appeared in my mind, which slowly became many questions. What if I have a baby with a birth defect? What if I pass my defects on to a baby? Should I have kids of my own? Is it too risky? What if the baby gets something worse than what I had? Although the questions were never overwhelming, they were always there, lurking in my subconscious, popping up every now and again when I was reminded of my chance of having a baby with an issue.

During those years, when the questions would surface, I learned that the best way to deal with them was by giving them to the Lord. I would remember that He was the only One who knew the answer, and dwelling on them was not going to change anything. I had the choice of allowing the questions to cause fear and anxiety or to trust that if God could bring me through my own defects, He could and would do the same for any babies I had. Though the questions never went away completely, my persistent singleness helped them stay in the background for the next 14 years, since no baby was in sight.

Then came marriage, and 9 months later, we were pregnant! Here came the baby carriage! We were thrilled, so excited to be welcoming our first little one, (and also terrified, as most new parents are). At this point, those pesky questions that had been lurking came forward and took up permanent residence in my daily thinking. My doctor, desiring to be extra cautious given my history, ordered a detailed anatomy scan to be done by a high risk pregnancy doctor at 17 weeks instead of the traditional 20 weeks to check for any birth defects.

The appointment was like a dream. We got to see our baby moving and wiggling for an hour and a half on the screen, and were given a photo album worth of images to take home. They checked every inch and declared our baby perfectly healthy, with no visible defects or issues. We found out that it was going to be a boy, and left rejoicing that the pregnancy was progressing so smoothly.

At long last it seemed as though my ‘what if’ questions could be put to rest and all that was left was waiting for our little guy to arrive.

Part 2

Monday Review – I Dream of You

In my first 10 months of motherhood I have discovered many new companies and products that have been so helpful and awesome, so I have decided to start a weekly review post where I share one of my finds! These are not ads; I am not getting paid by anyone to share this information, they are simply my reviews on items I have found and want you to know about. They will not always be baby or kid related either, so these reviews are for everyone! Come back each Monday for a new item, and if you have found something awesome that makes life easier/better, please share it with me. I would love to post guest reviews so we can all learn and share together!

First up: I Dream of You, by JJ Heller

JJ Heller - I dream of you

It is no secret that JJ Heller is one of my favorite music artists. Her soft voice, melodic sound and beautiful writing draw you in and make your day better. So, when I learned that she was creating a lullaby cd, it was the first thing that went on our baby registry and one of my favorite things we received.

We started playing it while I was still pregnant, and had it playing in the delivery room as our son was born. What I did not realize at the time is that it is magic. But I know that now. Two weeks after our baby was born he was diagnosed with a congenital heart condition called Tetralogy of Fallot. Because of this condition, it was vital that we keep him as calm as possible until his surgery to repair the hole in his heart.

So, anytime he started getting too riled up, we turned on I Dream of You. And like magic, he calmed instantly. Every time. It worked before his surgery, it worked in the hospital when he started getting agitated with all the cords and wires, and it still works on car trips and when he wakes up in the night crying. It is amazing how quickly it calms him down, and I recommend it to anyone having a baby.

What I like about it: It is not annoying. So many lullaby songs are cheesy and boring. These songs are beautiful, written for both parents and baby. The songs provide encouragement on nights that seem to go on forever, and give hope to weary moms and dads. They remind you that this baby is a gift, and that everything is going to be ok. It is an album that I can listen to over and over – we’ve had it going for ten months so far and I am not tired of it yet.

Favorite tracks:

  • The Sun will Rise
  • Big World, Baby
  • I Get to Be the One

Cost: $8.99, or free to stream on some sites

Where you can get it:  iTunes, Amazon, Spotify, or her website jjheller.com.

Summary: Get it. If you are having a baby, you will not regret it. If you have a baby in the hospital, definitely get it. I wish every NICU and PICU in the world could have a copy of it to play for the babies. It makes that much of a difference.