We three are so loved! (Special Thanks!)

Mama and I went nursery furniture shopping yesterday. It was the first time that I have intentionally looked for anything for the baby. When we walked into the store, I was immediately struck by how beautiful one particular bedroom set was. I remained enamored with the furniture even after having viewed dozens more.

Thanks to our parents, we now own the exquisite furniture pictured below. I feel so humbled to have such supportive, encouraging, and giving parents. We are tremendously grateful for their help with this purchase, and I know that we all will enjoy the pieces for years to come! Ayden is going to have a room fit for a little prince!

Posing for the Camera

The advantage to having many ultrasounds is that we get to see a lot of our son's development. Marveling at God's handiwork, I watch with such awe and wonder.

During our visit to the fetal specialists on December 18th (one day shy of 22 weeks), Ayden was 15 ounces. This first shot shows his profile. While this picture was taken, we observed his lips moving. My favorite part of an ultrasound is watching Ayden's hands and feet. A 2D ultrasound allows one to see the number of bones in the baby's hands and feet. When this picture was taken, Ayden started with his hand in a fist and slowly extended his thumb and forefinger.
Though it makes sense that a baby in the womb would be incredibly flexible, it's a whole other experience to actually see your son wiggle into unusual positions. I wish that this scan was better, but in this photo, Ayden has his feet side-by-side; however, on the foot shown to the left, you see Ayden's toes facing down, and on the foot on the right, his toes are facing up. (Try putting yourself in that position!)
This last picture is of Ayden's face. I know. I know. The orbits for his eyes kind of make him look like an alien. This mama thinks he is so beautiful!
Some other notes of interest:
1. We love Ayden's pediatric cardiologist at Vanderbilt. Not only does she have an impressive resume, but she also conveys medical jargon in a very personal and understandable way. We feel good about the fact that she will be the one caring for and communicating with our son into his teenage years.
2. Vanderbilt provides one with tremendous resources. We have a social worker that we are able to correspond with, get resources from, etc. This woman will also meet with us extensively to introduce us to the hospital, staff, etc.
3. My OB is a Baptist Hospital physician, so he will be referring me to someone so that I can deliver at Vanderbilt. While I am a bit saddened by this, I am willing to make the necessary changes to protect our precious kiddo. Assuming all goes well, I can deliver as normal. We do not have to schedule a C-section.
4. At my doctor's visit on Monday, December 28th, I had gained 14 pounds over almost six months. I officially have a baby bump. Finding a comfortable position while sitting/sleeping has become somewhat difficult, and we had to finally spring for a maternity winter coat. (I am becoming less and less able to wear my clothes.)
5. I have begun reading children's books to Ayden. His first book was I Lost My Tooth in Africa, and his second was Don't Let the Pigeon Stay Up Late. I believe that I want to do our little dude's nursery in children's book fashion, though I am not sure what that really entails yet.
6. God is great. He is an awesome God, and He is able to take care of all things, big and small... like our Ayden. I am approaching our Lord with reverence and bold assurance: "Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need" (Hebrews 4:16).

Some (preliminary) very good news

Yesterday we were given the preliminary results of the amniocentesis that was done on the 18th. They were negative.

This has (preliminarily) lifted a huge sense of dread from my mind. I think I can eventually come to grips with the heart issue, but I don't know that I could've handled something like Down syndrome, too, if for no other reason than it would have made it even less likely that Ayden would survive. There is of course the possibility that the final results - which we will get either today or tomorrow - will be different, or that even the final results could be wrong, but it's my understanding that those possibilities are rather remote.

Putting that slight doubt/uncertainty aside, I am indescribably grateful that Ayden is, as our doctor put it yesterday, a normal boy who just happens to have an abnormal heart.

Thank God for that.

Merry Christmas!

"Just the facts, ma'am"

After having met with the cardiologist at Vanderbilt today, here is what we know about Ayden and his condition (disclaimer - I'm doing this recitation pretty much from memory, so I may be off on a few of the non-numerical specifics):

• He indeed has hypoplastic left heart syndrome (HLHS). More specifically, he has only one "pump" in his heart, whereas the rest of us have two. He is missing the pump that sends blood to his body after it has been oxygenated. HLHS also results in an underdeveloped aorta, which is the artery that sends the blood to the body.
• Ayden can survive in this state in the womb, but not in the world. Without treatment, he would die very quickly.
• Initially, medication will keep him alive. This medication keeps open an arterial bridge (my term) - the patent ductus arteriosus - which would normally close up after birth, and which is helping keep Ayden alive. This is merely a stop gap measure.
• In order to survive, three separate surgeries are necessary, which encompass two procedures (the second procedure is done over the course of two surgeries).
• The first surgery, the Norwood procedure (I hate linking to Wikipedia, but at a glance, it seems consistent with what the doctor told us), is the big hurdle. This will be done within days of Ayden being born. The procedure essentially combines his aorta with the pulmonary artery (which sends blood into the lungs and is connected to his one good pump), allowing his single pump to do double duty. A shunt is also put in to provide a pathway to the lungs.
• 20% of children born with HLHS do not survive the surgery.
• The second surgery - the first of two that combine to make up the Fontan procedure - will occur 3-6 months after birth. Another 20% of children born with HLHS will not survive this 3-6 month period.
• The third surgery will occur around the two year mark.
• The Fontan procedure has a very low mortality rate - somewhere around 5%.
• These final two surgeries reconfigure Ayden's heart. I'm a little unclear about this, but I think the end result is that Ayden's one pump will be used to send blood to the body, while blood that is returning to the heart from the body (and which needs to go to the lungs) will effectively bypass the heart and go straight to the pulmonary artery.
• After these surgeries, Ayden will need very regular check ups with the cardiologist.
• Obviously, he will be at a higher risk to develop heart-related issues.
• A heart transplant is also an option, but it is a secondary option to the surgeries.
• Even if the amnio results (which we have not yet received) come back negative, that will only eliminate the major issues (e.g., Down syndrome). It is still possible that Ayden will have other, less serious developmental problems (e.g., ADHD).
• The long term prognosis/life expectancy is unknown. While the Fontan procedure has been around for 40 or so years, the Norwood procedure was only developed in the 80s. The children who have survived the whole ordeal are only now in their late 20s, at most.
  

I've skipped some of the smaller details, but that's the gist of it all. Needless to say, it's an uphill battle. The very real possibility that I will only spend a matter of days with my son is a hard pill to swallow. But, I am confident that we have a hospital and a team of doctors that will fight for him as if he was their own son. There is some comfort in that. Not enough, but some.

Right now, some is good.

Silver Lining

Bryan was very brave this past week, as he has shared with you some of the most difficult information we have ever faced, both as individuals and as a couple. His entries concerning Ayden are expressed beautifully, and I am so grateful for the strength that he had to write them.

The title of this post was inspired by my daddy. He has said to me on more than one occasion that he has to believe that there is a silver lining in Ayden’s story. While I am indeed hopeful for Ayden’s future, I also know that God may not reveal said silver lining to us… but that doesn’t mean that one doesn’t exist. Right now, I can only express to you the joys that I have experienced in getting to know my son over five and a half months of pregnancy and the joys that I have known in friends and family.

As you read my entry, by no means do I want you to think that I am delusional or that I don’t feel intense fear and sorrow. On the contrary, this experience has been all too real (and will only become more so in the next year), and the heartache… well, the tears burn as they flow. However, at this moment… this moment I choose joy.

I first want to express sincere appreciation for the love that you have poured out to us:

On Tuesday, the 15th, we were happily anticipating our second ultrasound. Yes, that was the day that we found out that our baby could possibly have a heart condition, but we also discovered that we were having a boy. On this special occasion, we had numerous people excited to meet our son. We also had people encourage us through the worry. Some close friends of ours sacrificed to present me with a gift, an awesome maternity skirt and an adorable blue onesie that reads, “100% absolutely positively without a doubt worth the wait.” He is (and will be) “worth the wait.”

For three days Bryan was in the Christmas production at our church, and the men and women of that play surrounded Bryan with their love and support. They prayed over Bryan and shed tears for our struggle, and I know that they will continue to be prayer warriors for our little one.

On Friday, the first day of the Christmas play, we received news of Ayden’s heart condition. I was placed on bedrest after the amniocentesis, which meant that I was also home alone. My family was supposed to come the following day for my maternal family’s Christmas celebration, but my daddy drove up a day early to be with me.

On Saturday morning, I realized that we had no groceries. Then my mama calls. She was on her way to her sister’s house and wanted to know if she could stop by first. She brought us all breakfast. In particular, she brought me my absolute favorite muffins from Magic Muffin in Birmingham.

On Saturday evening, Bryan’s coworkers and their families came to see Bryan in the Christmas play. I know that I have mentioned this before, but Bryan has been immensely blessed by the people that he works with, and I was so touched by their presence.





That night we came home to a note in our door. One of my coworkers had come by to pray with us. In his note, he reminded me of the miracles we read in the Bible, the same miracles that God can perform with our Ayden.

We have also received countless phone calls, text messages, and emails. I apologize if I have not returned yours. Please know that we are so grateful for your thoughts and prayers.

Now the fun part… about our little guy:

Ayden is a very active child. He constantly moves his legs and arms. However, he will not “perform” on command. Technicians and doctors alike marvel at his constant movement, yet obvious unwillingness to flip, turn, etc. Many have tried poking and pushing my belly to get our child to move accordingly, but they fight a very stubborn Ayden.

I hope that you don’t find this next part inappropriate to share… Since we have a squirmer on our hands, those who tried to get good pictures of Ayden’s various body parts had a difficult time. They commented that he didn’t want to show them the things they needed to see (like the heart), but he was quick to show us all that he was a boy.

Our son is also very inquisitive. While the doctor performed the amniocentesis, our child sought to get closer to the needle. At one point, he even reached for it! The doctor then had to make a second injection in a place Ayden couldn’t see to reach. We had invaded his world, and he was eager to see what this shiny, new thing was!

I’ve noticed that Ayden loves church. I can only assume this from his increase in activity every time we are there. When we have gone to church on Sunday mornings or I have attended play rehearsals/performances, he is in a flurry of movement. He also seems fairly energetic when Bryan and I are together. Maybe he senses that in church and with my husband I am most at peace and feel most comforted, so he too feels the freedom to let loose… or maybe mornings and evenings are just his most active times!

About the months ahead:

Bryan and I could have ended up in any number of cities after we lived in NYC. Moving to Nashville honestly felt like a calling, and so we took a leap to our newest location. In the five years that we have been here, though we had some intense doubts along the way, we have begun to see the plan unfold perfectly. Now that we know our son will experience heart complications, it makes me that much more grateful that we live here. Vanderbilt Children’s Hospital is the perfect place in a perfect plan for Ayden. Please pray over the doctors as we continue to introduce to them our son.

In the meantime, Ayden is a happy, energetic little one in his cozy house. He doesn’t know the pain of any of this, and he is growing beautifully.

“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” (Psalm 139:13-14).

This is the hardest thing I've ever had to write...

I'm going to just cut straight to the chase: today was not a good day. In fact, today has been the most difficult day of my life. Today, I learned my son has a congenital heart defect. Today, I learned there is a 1 in 10 chance that my son also has a chromosomal anomaly. That is to say, there is a 10% chance he also has Down syndrome, or something similar. They drew fluid today to run the tests for that possibility. We should have the results some time next week. Regardless, it is 100% certain that he will need at least one surgery, if not several, after he is born, just to have a chance to survive. We will be meeting with the cardiologists at Vanderbilt soon to discuss that very issue. Today was not a good day.

Although much of what the doctor said after "your baby has a congenital heart defect" registered as little more than white noise, based on what I have been able to piece together by replaying it in my head, I think my son may have hypoplastic left heart syndrome. In layman's terms, the left side of his heart is grossly underdeveloped, which leaves the right side to do all of the work. While apparently that is sustainable within the womb, outside of it, it is not. It is not curable, at least not in the sense that it can be healed. There is a series of surgeries that can, for the most part, alleviate the problem. According to the doctor we saw today, that has around a 70% success rate. Even if the surgeries are successful, my son would have "limited exercise capacity" throughout his entire life. Today was not a good day.

***

I don't even know how to codify how I feel right now. I was just starting to get used to the idea that I would get to teach my son how to throw and catch a baseball and football, that I would get to teach him how to swing a golf club. Now, I can't shake the thought that I will never have those opportunities, at least not on Earth. As I sit at the computer and type this, I can't help but wonder if the "I (heart) Daddy" frame that Allison made me after we found out she was pregnant will ever have his picture in it. I know these are emotional responses based on a series of outcomes that may never come to pass, but I can't make them go away. It is as if someone has pulled the rug out from underneath me right after I have finally learned to stand up on my own.

A friend asked me tonight, after I told him the status of my son, whether or not this is something that could correct itself. My answer was that, medically and scientifically, it isn't possible. The obvious implication of my response is that it is possible, supernaturally. I want to believe, maybe selfishly, that it's true. I want to believe that it can happen, but it's hard. As an abstract concept, I unquestionably believe that miracles happen. Faced with needing one, however, turns your unwavering belief in an abstract concept completely on its ear. A line from our church's Christmas production, which we performed for the first time tonight - and which had practically no resonance with me until tonight - now seems prescient: "a miracle isn't a miracle unless it isn't supposed to happen." I have no idea whether or not my son will be the target of a miracle. I do know that, if he does become such a target, he wasn't "supposed to" be, in the Earthly sense. I will be praying that it is so. And preparing myself for the possibility that he won't be. Either way, I can only hope that I find comfort, and some semblance of hope, in the truism expressed in that line from the play: miracles, by their very nature, are not supposed to happen.

***

I will end by simply saying that, if praying is something that you are inclined to do, I humbly ask that you pray for my son directly.

His name is Ayden Avery.

It's a...

So, today was the big day. The day we were to find out whether we were having a boy or a girl. An exciting day. And it was exciting. Unfortunately, it was also something else. I don't really know how to describe or quantify what that "something else" is. It suffices to say that, had I been able to write a script for how this morning would go, things would have been a bit different.

Here's the deal. Or rather, here's as much of the deal as I can make sense of right now. The tech spent considerable time trying different angles, moving Allison around, and attempting to move the baby around (by banging on Allison's belly with the ultrasound thing, which struck me as more than just a bit odd), in an effort to see all four chambers of the baby's heart, to no avail. Obviously, this is not a desirable result. This precipitated an unscheduled meeting with the doctor, which was only to occur "if there was a problem." Again, not a desirable result. What I took away from this meeting is: (1) they aren't seeing what they wanted to see (the four chambers of the heart); (2) this could be because there is a problem with the baby's heart; (3) this could be because of a failure in technology or of the baby's position at the time; (4) if there is a "problem," it could be merely because the heart hasn't finished developing, which it can still do; and (5) if there is a problem, there is no way to know right now exactly what that problem is. Regardless, the situation is such that it merits further investigation. To that end, we have an appointment with the fetal heart specialists, who apparently have uber-ultrasound equipment, on Friday at 1:30. They will see what they can (or cannot) see and we will go from there.

I don't know what to think about all of this. It could be something. It could be nothing. If it's something, it could be any number of different somethings, so there's no way to know what long term issues might be in play. Essentially, everything about the situation is unknown, which I can't quite wrap my head around. On the positive side - if there can be one here - the doctor practically gushed about the fetal heart specialists that we are going to, he said that around 25% of his patients need a followup because of this type of potential issue, and, should we need to once the baby is born, the best place to go in this medical area is right here in Nashville: Vanderbilt. There is some comfort to be found in all of those things. Additionally, whatever the problem is, if there is one, has not hindered the baby's development. Everything else - measurements, heart rates, etc. - was right in the middle of the normal ranges.

To sum up, there is some concern that there may be a problem with the heart. It will be looked into further on Friday, but I get the sense that there really isn't anything more we will know at that point. I think the idea is to start getting the support mechanisms in place and moving, should we need them. My hope and prayer is that we won't.

Putting all of that aside, the ultrasound process itself is absolutely fascinating. That goes for seeing how the baby moves in the womb and for the technology that makes seeing it possible. We clearly saw arms, legs, feet, hands, ribs, the spine, internal organs, facial features, a facial profile, and - most interesting to me - fingers and toes. Completely fascinating. I had no appreciation for how much, and how constantly, a baby will move around. Ours was all over the place. The arms and legs were moving practically nonstop.

Well, I guess that covers everything. We will provide updates here, as we learn more. So, until then, I'll end with this:









I'm going to have a son.

(and no, you can't know what the name is yet, so don't ask).

Classes Vote Boy

For the past week, my students have been debating whether or not our baby is a boy or a girl. I finally made them post their votes, and though some adamantly maintain that the baby is a girl, the majority votes for a boy. One student, in making his decision, needed to know if I liked football or not. When I told him that I only liked college ball, he proclaimed that we were having a boy. One boy said that he "never gets these things wrong," and he was one of the five students in my B1 class that voted girl. It has been quite entertaining...

B1: Girl-5 Boy-11
B2: Girl-10 Boy-7
B3: Girl-7 Boy-11
A3: Girl-7 Boy-13

Baby's Loves

How far along? 20 weeks (as of yesterday)

How is Bryan feeling? He still comments about the fears of having a daughter.

New developments? I experience car sickness almost every time I am in a car... and Bryan doesn't have to be the one driving.

I have also begun to feel the baby moving over the past few days. This morning the baby seemed to be particularly active, but I wasn't sure if Bryan would be able to feel him/her yet. I asked him if he wanted to try. His hand was on my belly for only a few seconds before the baby pushed/kicked the hardest yet. Sharing the baby's movement with Bryan has been the coolest moment of my pregnancy so far.

The baby also had big movement once during church worship this morning.

Obviously, the baby is in love with Daddy and God. What more could I want?