In the Beginning, There was Grace

"We, as Christians, can take times of hardship and allow them to distance us from God OR we can acknowledge that He is sovereign and continue to honor Him even when things don't go our way. This is certainly difficult to do and we have times in which we don't necessarily feel all happy and peaceful inside as we would like. Sometimes the best we can do is say 'Father, I'm in pain and I don't understand why this is happening. But I trust You in the good times and the bad and I ask that you would be with us through this hardship'."

-Jake Pendleton, father of Baby Jude

Over the course of the last six weeks, as Ryan and I eagerly anticipated our 18 week ultrasound, I have become highly sensitive to any and every story involving babies. We have celebrated the pending adoption of Emerson, a baby girl brought to live with her half brother and their wonderful family. We have cried with some of Ryan's friends as they face a very similar situation to the one we faced when they told us our baby had a cystic hygroma. Though I have never met them in person, I know how that feels, to have your worst fears come true.

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Lastly, we have been following the incredible struggle of a baby boy from Dothan, Alabama whose airways will not allow him to breathe on his own. For weeks, we have prayed for and watched the posts about Baby Jude, but yesterday his father posted that he was not doing well and the hospital has encouraged him to come to the NICU despite his own illness.

Seeing the struggles these other families have endured has encouraged us that we are not alone in our wait and that there is still hope! As Jude's father put it, "Sometimes the best we can do is say 'Father, I'm in pain and I don't understand why this is happeneing. But I trust You in the good times and the bad and I ask that you would be with us through this hardship.'" That is so hard to do sometimes when it means holding out everything that you love in your hands and opening them up to give them back to the Lord. Ryan has used this analogy when we pray, saying, "Lord, please let us hold everything with open hands." I want my heart to do that, to give freely back to the Lord even when I don't understand.

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Last Monday, Ryan and I went to the doctor for the ultrasound we had been praying we would be able to reach. After the genetic counselor had given us so many possible outcomes in April, we were nervous for our little one. How would the baby look? Would it be whole? How would the day end? So many questions rattled our brains as we went into the little room with the sonogram equipment. 

Ryan held my hand as the technician put the gel on my tummy and told us that she would not be able to tell whether or not things on the ultrasound look good. We would need to wait for the doctor to answer our questions. Soon after, we caught our first glimpse of our tiny baby in nearly two months. Tears came to my eyes seeing our little one squirming and rolling around. Silently, I sent about a dozen new prayers up to the Lord.

Despite her previous declaration that she would be unable to label anything as "good" or "bad", I think the technician sensed our nervousness and ended up saying things like, "That's good." Since it was an anatomy ultrasound, her job was to label the different body parts. We got to see our baby's pinky fingers, toes, elbows, and the nose Ryan says looks like me already. The tech asked if we want to know the sex, and we said we did. Just as I had suspected, we are having a baby girl!

During the sonogram, the nurse came in with the results of the noninvasive prenatal test I had done two weeks prior. She excitedly told me that they had come back negative for Down's Syndrome, Trisomy 13, and Trisomy 18, the most feared of the chromosomal abnormalities. A weight shifted off my chest to know that our baby did not (most likely) have anything wrong with her genetic code. The doctor later explained to us that this particular test did not check directly for Turner's Syndrome, but that the lab states they will report any abnormal findings with regard to sex chromosomes. Because there was nothing in the results to suggest such findings, we can assume that the baby's chromosomes appeared to be normal. Beyond that, the doctor, who we had never seen before, told us that upon looking at our ultrasound images, if he had not known the baby's previous diagnosis, he would have told us we have a healthy looking baby girl. Even though she is measuring a little on the small side, her fluid levels are down to normal.

The whole visit was a whirlwind - I left feeling like I'd just ran a race. My heart raced and my breath was labored. As soon as we got into the car, I burst into tears. I'm still in awe of how this could have happened, how we could get such a devestating report one day, and then weeks later get nearly an opposite one. I am still trying to understand how our baby seems to be healthy while so many other babies are not. In my head, I know the answer, that God's will is perfect and not always the way we want it to be. But in my heart, I am still struggling to accept this. The Lord is continuously working in me to be at peace in His arms. I know He is holding baby Jude there along with our little girl.

This pregnancy, while still only 19 weeks along, has been a journey through which God has taught us more than I had possibly imagined. It is still difficult for me to process because my mind wants to put the Lord's will into a box that makes sense to me. But I know it doesn't work like that. And I am forced to remember Jake Pendleton's words. The Lord is Sovereign, and it is our delight to honor Him in the good times and the bad times because He is always there for us. That is truly the point.

Baby Jude during the beginning of his stay at the Boston hospital
Baby Jude's Go Fund Me

More than anything, Ryan and I desire for our daughter and for all of our future children to serve the Lord with their lives. Even though she has been in the world for such a short time, our baby girl has already touched so many and been touched by countless prayers and blessings. She has felt the hand of the Lord heal her, a physical act that mirrors the grace that God has always shown to His people. From The Fall to The Cross, Grace has been evident and continues to work in the lives of people like Emerson, like Jude, like all babies with cystic hygromas, and like us.

We wanted our baby's name to reflect this manifestation of love, so we have chosen the name Genesis Grace. Genesis because it means, "In the beginning," and Grace because from the very beginning, there was grace. 

In Just a Moment

“I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

-The Fellowship of the Ring

Some moments in life make you forget how fleeting it is. They're sweet, and full, and trick you into believing that all of it lasts forever. Other moments are stark reminders that this place is not our home, and a lot of the time, these moments hurt.

There is no blame to shift for these moments. In fact, they are gifts from God so that we don't become too comfortable down here on this earth. They can be confusing though. You are suddenly left dazed and wondering what just happened and how you could have been so blissfully oblivious seconds before.

Ryan and I had one of those moments. After seeing the ultrasound of our twelve-week old baby for the first time, we were absolutely thrilled. We sat in the doctor's office, waiting for the doctor for about thirty minutes, but we didn't care. She could take all day. We were having a baby, and on the little pictures we held in our hands, it looked perfect.

Then the doctor appeared. She apologized for taking a long time, then sat down and said something that changed our lives from that moment on: "There is an abnormality in your baby's ultrasound." It was like my worst fear had been realized - there was something wrong with our baby. Ryan came and stood next to me, holding my hand. I don't know if he did that for me or for his own comfort. The doctor went on to explain what this "abnormality" was and what it could imply for our little one. As she spoke, I could feel a grip around my heart tightening and my stomach turned. I thank God for the artificial calm He gave me in that room so that I didn't break down as the doctor spoke to us.

Cystic hygroma. The doctor was not an expect on the topic (probably because the chances of having a cystic hygroma during pregnancy is 0.2-1%), so she promptly made us an appointment with a specialist at Texas Children's Hospital. I could hardly believe that our little baby was hardly twelve weeks old and already we were going to see a fetal specialist.

The genetic counselor explained in more detail what we already had researched after our first appointment. A cystic hygroma is the result of toxins being unable to leave the baby's body, so they form cysts (pockets of fluid beneath the baby's skin, like big blisters). Our baby's spans from its head to its butt, and the counselor counted about three of them. The cysts themselves are not the most alarming issue, although they can cause lethal stress to the baby. Rather, they are the result of an underlying, and oftentimes more serious, issue such as a chromosome disorder, a heart defect, a problem with the lymphatic system, or a recessive gene disorder. Each of these possibilities has its own host of statistics, none of which were positive.

What a surreal experience. I never thought that at twenty years old I would be sitting with my husband across a table from a lady telling us that there is a good chance our unborn baby will have Turner's Syndrome, Down Syndrome, Trisomy 18, Trisomy 16, or a fatal heart disorder. Of course, nobody expects for these times to come. As Gandalf wisely said to Frodo, "...so do all who live to see such times. But that is not for them to decide. All we have to deide is what to do with the time that is given us."

Desperate for some kind of ray of hope, Ryan finally said to the genetic counselor, "Isn't there a possibility at all that something could just not be developed all the way? I mean, the baby is so small..." The lady nodded, "Yes, of course, it could be that something just has a kink in it, and as the baby grows it will correct itself and you'll have a perfectly healthy baby. But that is usually not the case with a cystic hygroma." So there it was. Our tiny, almost impossible chance.

Since that Tuesday, we have met life a day at a time. Some evenings after a tiring day or being nauseaus and having to explain to everyone that, "Yes, I am pregnant, but the baby has this problem..." I can only come home and burst into tears. Looking at that sweet baby's profile, it kills me to think that I may never get to hold it or kiss its cute little nose or get to know its wonderful personality. But I feel like I need to explain it to people. Maybe so that they understand a little better where I am coming from. Ryan and I are in a strange limbo where we love our baby more than anything, but we can't exactly expect to have a healthy baby. The list of possibilities looms dauntingly over our heads no matter how positive we choose to be. Ryan has been the best at this. He has his moments when it gets too heavy for him, too, but God has given him a strength that allows him to encourage me and to give me hope when I'm starting to lose it.

It's confusing becuase I don't know if I am to trust that God is going to answer my prayers with a resounding yes, or if I am to be assured with the promise that my baby is in His hands. Of course, I truly know that it is the second one, but knowing that the odds are against us takes my breath away. I have to cling to that promise that the Lord has our baby, and He is going to protect it no matter what. That, I do believe.

So now, we are waiting for the next two weeks to pass so we can go to the doctor and hear the heartbeat again. We look forward to that appointment with both hope and dread. Every day, I wonder if the baby is still alive inside me or if I've already lost it and don't know. Ryan and I desire to hear that heartbeat so badly! The Lord is definitely sustaining us, and our marriage has become stronger because of this period of trials we have been enduring. We know we are not worse off than most, so for that we are thankful. And we have each other, so whatever happens, we will be alright. :) The Lord is in control.

"Be strong, and let us fight bravely for our people and the cities of our God. The LORD will do what is good in his sight.”

2 Samuel 10:12