My letter to Eli

As many of you know, our pregnancy with Eli was filled with a lot of uncertainty. So many of you showed your support with prayers and phone calls and emails. It meant so much to us. My mom encouraged me to write down the details of my pregnancy and Eli's birth, so I decided to write Eli a letter.

Dear Eli,

Merry Christmas little guy! You were born just two and a half months ago, and yet I can't seem to remember life without you. As we celebrated the birth of Jesus our Savior this Christmas, your daddy and I reflected on a miracle of His- your birth. If your story was written by medical experts, you wouldn't be with us today. But your story was authored by Jesus.

Halfway through my pregnancy with you, an ultrasound revealed that your heart was enlarged and over-rotated. We were sent to National Childrens Medical Center in Washington, DC for an MRI. I remember lying still during the test and feeling you move for the first time. And I prayed that you would be okay.

We found out your diagnosis that day- a hepatic AVM- a malformation in the liver. A cluster of blood vessels on your liver were causing an increase in blood flow to your heart, causing it to be enlarged over twenty percent. The doctors at Childrens said this was very rare and that no two cases were alike. They said it was serious and decided to monitor you weekly.

The next week we were referred to a fetal specialist at the University of Maryland Hospital in Baltimore. The doctor we were seeing was highly renowned and had experience with fetal AVMs. His prognosis was grim. He thought the AVM would continue to grow in size causing too much stress on your heart, resulting in heart failure. He told us that you had less than a 10% chance of making it to 28 weeks (the earliest they would deliver you to operate). He urged us to consider an in vitro experimental procedure using lasers to coil off the vessels connecting the mass to your heart. Only the University of Maryland, Baylor University, and somewhere in Belgium did the procedure. He guessed that there was a 50% chance of some success and was uncertain if more than one procedure would be necessary. For a moment, I thought we had our answer. Those were better odds than if we chose no intervention. But then he added that you had a 50% chance of surviving the procedure. The connector vessels might bleed or the procedure might send me into premature labor. He told us we would have to make a decision in the next couple of days. If we opted to do the procedure, it would be scheduled in the following week or two.

Your dad and I left in shock. Less than a 10% chance? 50/50 odds that you would survive a procedure that wasn't guaranteed to work? How could we possibly make a decision that was the equivalent of flipping a coin? But how could we not do anything? Your dad dropped me off at work. I remember going straight into the bathroom stall to cry before returning to my office. Those next days I prayed for direction. My prayers were desperate. Please God save my baby.

We returned a few days later still not sure what to do but armed with more questions. The doctor checked you again and discovered that more connector vessels were now present and that the surgery would be too risky. I was relieved that we didn't have to make that decision. Then I realized what we were left with- our "best case scenario"- a less than 10% chance of you making it to 28 weeks, and if you did, hoping you would weigh enough and be healthy enough to undergo delivery and surgery.

Each week a fetal echo was done on your heart to look for signs of heart failure. I remember sitting in the bathtub one night after one of your tests and the song "Praise You in This Storm" came to mind. I thanked God that throughout this trial, He promised to be there and to give grace for each day. I've never felt so helpless in my life. Your daddy and I couldn't save you. All the doctors could do was wait and monitor. But I knew that I could pray. I prayed that the mass would go away. I prayed that your little heart would continue to withstand the extra blood flow. And I prayed for that grace which God graciously poured out every day. When faced with trial, people often ask why God would allow something like this to happen. Although I didn't understand, I knew that our trial was an opportunity to trust God, to grow closer to Him, and to experience the peace that He promises (Isaiah 40:28-31 and Psalms 62:5-8). I prayed to God to help me to trust Him and His plan, because you belonged to Him and His plans for you are more perfect than anything I could ever imagine. And I asked God to help me pray the hardest prayer- to accept His plan for you even if it meant that He might not answer my prayers how I wanted, even if it meant that He would take you to heaven before I could ever see your face.

Your Mim and Pop and Grandma and Grandpa prayed every day for you. They were true prayer warriors. So were the people at their churches. People in the midst of their own trials prayed for you. Nan prayed everyday for you while facing a serious surgery and long recovery. Thousands of people prayed for you. You were on prayer request lists all over the country. Your father and I were so encouraged to know that so many people were praying.

Each week we would either drive to Childrens Hospital or an office in Frederick for your test. A tech would take fifty or so pictures of your heart, and then we would wait for the doctor to analyze the results. Waiting was so hard. If only we could get to 28 weeks, then the doctors could deliver you via c-section and operate. Of course even that was no guarantee, but if you developed heart failure before 28 weeks, there was nothing we could do.

Week after week we were encouraged with test results that showed no change in the mass and no signs of heart failure. When Week 28 arrived on August 9th and your heart was still withstanding the extra flow, your dad and I went out to dinner to celebrate. The team of doctors decided to watch you more closely, often twice a week. They also measured your growth at each appointment to make sure the AVM wasn't affecting any of your other organs.

Your growth continued to look positive, and you were gaining weight. The doctors hoped for 34 weeks. When we reached 34 weeks, they decided to schedule your delivery for the 37th week since you would be considered full term. The date was set for October 15 and an obstetrician at Washington Hospital Center was selected for the delivery. The cardiologist thought some form of intervention would be needed within 24 hours, since your blood flow would change drastically once you were born and breathing on your own. A team at Childrens was assembled and on call for that day, including a surgeon who would intervene if necessary. Your father and I were nervous as we left the house on October 14th. We had taken birthing classes in the event that I would be allowed to deliver naturally. The doctors okayed a natural birth but would deliver you via c-section if you showed any signs of distress during labor.

At 1:10am on October 15, you entered the world. Our little miracle had arrived! You were just perfect, all 5 pounds and 15 ounces of you. I thought you looked just like your daddy. About an hour after you were born, you were taken by ambulance across the street to Childrens. Your dad went with you while they tested you and drew blood. After three days in the cardiac intensive care unit, we were allowed to take you home with instructions on how to look for signs of heart failure. No intervention was needed at that point! Your heart was doing just fine. Follow up tests in the next weeks showed that your heart size was in the upper limits of normal and that the AVM had actually decreased in size! The doctors couldn't explain it. As of this point, your heart and liver will be checked every few weeks (and later checked every few months) for changes.

Little Eli, you are a miracle, a true gift from God. Celebrating the Christmas season with family and friends was so much sweeter this year because you were a part of it. Amid all the presents under the tree was a very special gift that your daddy and I picked out for you. It's a simple green painted wooden sign that reads Prayer Changes Things. We hung it above your doorway as a reminder of God's answer to prayer. Eli, as you grow up, don't ever forget the power of prayer. Remember that praying for someone is the kindest thing you can do for them. We can never adaquately express our thanks to all the prayer warriors who were so faithful to pray for you. And we can never thank God enough that he answered the prayers that so many lifted up to Him. All the work of the doctors didn't save you. Your daddy and I didn't save you. Jesus saved you.

I love you,

Mommy