Tuesday, October 25, 2016

Our Journey Through Fetal Medicine: The Quiet Hours

I'm updating from my phone tonight because I want to spend time with my husband who is simultaneously Christmas shopping on his phone and watching Game 1 of the World Series. I'm not a huge baseball kind of girl (in March it sounds fun to me but by June I'm uhhh...over it), but I married into a baseball family that may excommunicate me if I say that outloud. Seeing how I love my husband more than anything in this world, I'll gladly sit and watch the game with him just so I can see him enjoy it. What you do for love! Anyway, hopefully this post looks normal coming from my phone.

We have had no updates, test results, or appointments in 2 weeks. Sometimes I forget we are even still in the thick of things since I don't have a constant reminder. It has been a nice rest for the soul. Soon enough we will be getting more information in, so we are enjoying a pretty normal day-to-day for now.

On Saturday we put up new shutters Cash made for the house and watched the Razorbacks forget they were playing a football game. It was the day Ann Louise's funeral was supposed to be. Instead it was just kind of a normal day. I sat down that night and felt her kicking and playing. Oh, the mighty works of God!

The other day I wrote about the friends, family, and strangers who have reached out to us. I can't get over it. While I hate going through this, the people who have loved us so deeply during this time have flat out blown me away. I can't even say Thank You to everyone. You all have inspired me to do more in everyday little things.

What seems like it may not be a big deal, trust me--to someone whose heart is hurting, it is HUGE! Many moments when I felt I couldn't go on, a friend would offer just the right thing at the right time. It is amazing to see how people use their talents. You don't have to be a doctor and go to Africa to touch a soul. Sometimes you just need to knock on your neighbor's door with a bag of cookies.

I mentioned the bear being made for us. I picked it up today. No words.

So many emotions filled me when I got in the car. It is beautiful with Ann Louise's heartbeat inside that plays when you squeeze it. A poem was also written to pay tribute to what the bear means. It is one of the most special gifts I've ever been given. As I sat in my car and listened to her little heartbeat while reading the poem, I lost it. The flood of emotions of what it would've been like to hear that had we not been given a miracle rushed to me. And yet I could feel her kick and remind me we are not done here--she still has so much to do. That bear, it will always hold a special place in my heart.

The poem reads:
To my precious parents...
Although we are not together,
We will never be really apart-
'Cause before I went to Heaven
I left you my beating heart.

I'm here inside this teddy bear,
Which bears my precious name.
His job is to always remind you
That my heart is a "living" flame.

So when you feel the need to know
That I am not really gone-
Just hug my bear, and I'll be there...
My heart forever lives on!

Someone I don't even know did that for us. My heart is touched in the deepest of ways. Thank you to that person I may not ever meet. And thank you to all of our friends who have stood by us and held us up during the dark days, the miracle moments, and these quiet hours that tick so slowly. I thank God for each of you.


Sunday, October 16, 2016

Our Journey Through Fetal Medicine: Houston Is Just One Step Closer to You

For the next week we (im)patiently waited for our visit to Houston. Up to this point we had had a lot of emotions ranging from hope to wanting to give up. Some days people would say they were amazed we were making it. I can't lie; I was amazed myself, because I knew in my heart that so many times I wanted to quit.

Before we had known everything we knew at this point (but after we knew it was fatal), my sister asked how could she tell people to pray for us specifically. I remember telling her, "I'd want you to pray for a miscarriage." Gasp.

That sounds horrendous I'm sure. But at so many times throughout this journey the words of my OB rang loudly in my memory: there are worse things than a miscarriage. No, I would never in a normal, healthy pregnancy pray for that. Crap, in a pregnancy with a glimmer of hope I would never pray for that. However, at that time we were given zero chance. Zero. In fact our specialist had told us that no intervention would be done because it would be unethical to intervene for a fetus knowing it would die during delivery or shortly after birth.

I say that to go back to some of the depths of despair we had been in. Yet we had been given an extra week in being sent to Houston. It is very hard to come out of the deep sadness and shine a radiant light on little hope. The last we had heard was that Ann Louise may have MMIHS. That. Sucked. You don't get up too high on the hope that "Oh, she's not going to die at birth. She will die an excruciating death 3 months later." So we found our week waiting for Houston a week of hope we never dreamed possible while simultaneously feeling the despair we had been experiencing the past several weeks.

It is a bizarre state of emotion to bing back and forth between hope and despair. When we would talk in private, Cash and I could admit this to one another. We wanted to believe so desperately that God was doing a great miracle, but the hard days we had just went through were absolutely so devastating to our emotions we did not want to get out of them and be told we had to go back there. It was easier to just stay there.

We continued to pray for Ann Louise to be healed. We also prayed for peace if she was not. What else can you pray for?

Once we got to Houston I knew we were in a whole new ballgame. The Medical Center is the 8th largest business district in the entire country. I have never seen so many doctors in my life; the whole place was like nothing I had ever seen. From the moment we got there we both felt calm and knew we were in the best hands possible. It was time to get an answer.

Our Houston specialist is downright the coolest doctor ever. From the top of his head to the tip of his toes he radiates his excitement for fetal medicine. After the tech had taken every possible measurement 2-3 times and 45 minutes later, we finally got to hear what the doctor had to say. He asked us to repeat to him every detail of what we had been through and he listened patiently with nods and "mmhmms."

After we recounted the past 2 months to him, he looked at us and said, "Quite frankly, I have no idea. Honest to God if she were a boy I would say she had had LUTO and a blocking valve was pushed through. But that is not possible in a girl. I have no idea. Let's reconvene and put our heads together in 30 minutes."

This is the moment for me when I began to get ecstatic. I had hoped we would finally have an answer, but we didn't. And oddly enough that gave me a huge sense of hope.

The doctor came back to get us and took us into a conference room where he began to write everything Ann Louise had going on onto the marker board:
  • englarged, irreregularly shaped bladder
  • enlarged left kidney
  • right ureter valve not functioning
  • sunken chest
When he stepped back he said, "None of this goes together. Look at this. A right ureter valve not functioning should mean an enlarged right kidney. But it is her left kidney that is mostly enlarged. And why is her bladder shaped like this?"

As he talked we soaked in every word. It was astonishing to hear how his mind worked. He drew diagrams and thought everything through with us as if we were a part of his team. He kept saying it was the most bizarre thing, all of it. Originally he would have diagnosed LUTO too; now it looks like LUTO in a boy that blew out, but she's a girl. He mostly ruled out MMIHS due to the irregular bladder shape. Everything about how her body was handling LUTO seemed to be how a boy's body would handle it. (Okay, and being honest, I began to worry that maybe she had both parts. You see stuff like that on Lifetime! It was a real fear. But she does not exhibit a single male part, just male symptoms. It is weird.)

Ultimately he finished with the best news we had heard in the entire pregnancy: he does not think it is fatal. He did say, however, it is life changing. What the life changes will be we will have to monitor throughout the pregnancy. He also said we will have to keep running tests to close certain doors, but he wants so badly to understand what her body is doing and get us through this.

My heart jumped to my throat. I could've cried right there on his shoulder. We told him we had been expected to deliver her, dead, in 2 days. Yet now she was most likely going to live. He said he would have suggested the same fatal diagnosis to us 2 weeks before, but her body has just done something he has never seen in all of his practice. (And he is a world's leading expert in fetal medicine.)

The rest of the day included meeting with our Houston genetic counselor and undergoing an amniocentesis. On Friday we got the preliminary results that the major chromosome abnormalities such as Down's, the Trisomys, etc. were all ruled out. More detailed testing is coming, and we should hear those results in the coming weeks.

Right now we feel we are sitting at the throne of grace and fully believe God has performed a miracle in Ann Louise. We have a long way to go. At minimum she will most likely need surgery after birth. However, God has healed her to this degree; we give full assurance He will deliver her through it all.

Every moment that has passed this weekend has given me chills. It is one more moment we have Ann Louise that we never thought possible. She has just started to really kick, especially when I'm holding her brother. They are already fighting! It does not escape us the many, many friends and strangers who prayed for us. We know they have walked this journey with us and perhaps may never fully know how much we love them for being our knees and voices of prayer when all too often we could not be that for ourselves.

In twenty weeks Ann Louise will be a full-term baby. The tests and diagnoses during that time could read anything, literally. They have no clue what is happening. Yet we already have experienced a miracle from the God of the universe, the God who breathed the stars in the sky. That is the best diagnosis my sweet baby could receive. I have no idea what she will accomplish in life, but I do know it will be great. Already I am honored to be her mother. She is a fighter, a 10 ounce body with an 80 pound heart.

You know, I could probably keep using those prayers as I raise this strong-willed child. She has the perfect big brother to inspire her orneriness.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Friday, October 14, 2016

Our Journey Through Fetal Medicine: There is Power in the Name of Jesus

I knew the Bible was true. I clung to the words written in it. And I knew prayer was powerful. A song that kept coming to me was that there is power in the name of Jesus. People from near and far reached out to us and to our families to share they had been on their knees in prayer for us. You know the difference in the ol' "I'll pray for you" or "Praying!" messages you get and the real, get down on your knees face to face with God "I am praying boldly for you" messages. The latter was felt a million times over through friends, family, strangers. In my life I had never felt so loved or so close to Christ.

The genetic counselor had told us in our diagnosis appointment that we could have an ultrasound whenever we want between then and delivery. Some people choose often; some people choose never. We chose about a week before the delivery so our family could be there with us to see her alive one last time. We knew at this point she would most likely not live through delivery, so we prepared ourselves for this ultrasound as we approached the goodbye stage.

To make it easier for us the office had scheduled our appointment in Midland. I called to change that to Odessa because we loved the ultrasound tech there. And we knew if anything had changed he would notice. Overall, we were just more comfortable with the same tech. We weren't even going to see the doctor or the genetic counselor. This was just for us to begin saying goodbye.

When the tech started the ultrasound, I knew surely my mind was playing tricks on me. I did not say a word as I stared in disbelief. Did her bladder look smaller or was that just me?

At that time he said, "I'm not sure, but I think the bladder is smaller." I held my breath. Oh, God, please. Please.

We let our parents come in for what seemed like 10 seconds, and they were escorted back out. I'm sure they were wondering why they had come all that way to not really see anything. But the tech started looking for the older ultrasounds and comparing the measurements. He was so excited when he found them, "Yes! Last time the bladder was over 5 centimeters. Today it is less than 3. I am going to get the doctor."

Cash and I grabbed hands. Was this happening? Of all the times we had expected a miracle, it had never happened. But now when we came to say goodbye, was a miracle in our midst? A different doctor came in and said he was going to take a look as our doctor was in Midland that day. He said yes the bladder was smaller but most importantly the amniotic fluid levels were normal. Normal. They were supposed to be almost all gone by now. He went out to call our doctor.

He came back in with the genetic counselor and said our doctor had told him, "That is miraculous." My heart leapt.

They quickly scheduled us for 8:40 the next morning to see our specialist. We were ecstatic but trying to control our emotions. What if he saw something totally different? It didn't matter in that moment in time. I told Cash tomorrow can worry about itself, tonight we are praising God.

The next day we saw our specialist who explained to us some of the very real obstacles we had yet to overcome. He said looking at that moment he would guess megacystic microcolon (MMIHS). But he was not sure as he was not in this daily anymore, so he wanted us to go to Houston to the Children's Memorial Hermann Fetal Center. He felt confident that the guys there live in this more than he does and they could steer us in the best direction.

I googled MMIHS. And suddenly the excitement of continuing the pregnancy faded. The average lifespan is 3 1/2 months. Children who survive have multiple organ transplants and life for them..and their families...is hard. Hospitals. Surgeries. Feeding tubes. The list goes on.

The feeling of anger crept back up. "Oh, God, yesterday we began to feel a miracle. Today we hurt so deeply. Please, Lord, spare us from an even grimmer outlook." We felt back at square one, back to facing decisions that no parent ever wants to make. I could not believe this. In a very real sense I was angry that we had had peace and were learning to deal with loss then were tossed an ounce of a miracle all to have it slammed back down our throat.

In the week we waited for Houston I compared us to the Israelites in the desert. It seemed so much easier to crawl back into the bondage of slavery, the bondage of death, because at least then we knew what we were getting. That probably sounds crazy. But that is as real as I can get. I had accepted death; now I had to wait on the promised land. Or was it even going to be a promised land? Would it just be a new bondage of slavery?

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Our Journey Through Fetal Medicine: Living in Peace

At times I could sit and plan for a beautiful funeral and anticipate the arrival of friends and family. At times, of course, I was very weak. If I'm honest, I questioned God a lot. I had the obvious questions of why Ann Louise. But I also had a very deep, burning question: God, why did you give such peace to us and have so many praying for us if our answer was death? God, why did you say "no" to our miracle?

I began to reflect back on the many stages we had been through, and I knew God was telling me that up to that point no miracle had been available.
  • If it had been a fluke on that second ultrasound, well, we would have called it a fluke.
  • If she had been a boy, we would have been ever grateful for the doctors putting a shunt in the bladder.
  • If, if, if...then we and the doctors and the world would have taken it for every other outcome other than a miracle.
If God were to get the glory, a miracle had to be present when all other options were cast aside. But, I knew in a very real way, that God's answer to a miracle was still perhaps "no." So my prayers became, "Lord, I beg of you for this miracle to heal Ann Louise. And, Lord, if you say no, please see me through with the peace that surpasses all understanding. I cannot endure this without You."

I received peace. Cash had that as well. We were very thankful that God was allowing us to get out of bed and take one day at a time. That is all we knew. We hurt and were much in the mourning stage, but despite our despair we knew God was seeing us through.

We clung to each other. A dear, elderly friend of mine stopped me at church. When he spoke his gentle words, he explained nothing can stop this pain right now but if Cash and I lean on each other then we can look back one day and see this was a very sweet time in our marriage. I knew he was right. My husband and I have always had a wonderful marriage, but we had never drawn as close as we were during this time. As the old saying goes, it either makes you or breaks you.

Throughout the coming days we searched for ways to just be together. Cash booked us a weekend getaway in Beaver Creek, Colorado for a few weeks after the funeral. We highly anticipated getting away from the sadness and the stage of grief we were stuck in.

We also enjoyed a special date night one Saturday when his mom watched Henry. We went bowling and seriously had more fun bowling 2 games and eating really unhealthy food than perhaps we had ever had. Then we met up with our friends Connor and Meredith for a treat at the local hibachi grill. Afterwards we all went out for ice cream and talked until we knew had to get back home to the kiddos. It was the most refreshing night we had had since Henry was born! Just being with Cash and one of my dearest friends gave me the reassurance that I could one day be joyful again.

enjoying a night away

We had another date night shortly thereafter. My mom was in town the evening of Cash's CEO's birthday party (which is always a huge event), so we got to dust off our boots and enjoy the Bellamy Brothers with our work friends. Sometimes being alone is a great way to grieve, but many times being with friends is a great way to heal.

The days kept slipping faster and faster. When I was pregnant with Henry, the days drug on. I felt like I was pregnant for 8 years. But with Ann Louise each day was a gift. I was beginning to feel her move. Every time she moved I smiled before the remembrance of the fading time came back. As one grieving mother wrote, it is very surreal to feel your baby kick inside of you while you know that soon you will be visiting those bones at a grave. I tried to shake these thoughts, but this summed up my existence at the time. Every day that passed was one more day closer to the worst day of my life.

We had decided she would be cremated and had ordered a beautiful moon shaped urn for her precious ashes. Nothing had stood out to us as to where to keep the urn, but then Cash suggested we upgrade the gardens in the backyard and he could build a pedestal for a bird bath. We could keep the urn inside of this pedestal. I loved it. He is such a wonderful husband, but he is an even more incredible and doting dad. He started working that weekend to clear out some of the shrubs in the backyard.

A priest (in a very weird way with a very weird story) gave me Psalms 23:4--

"Even though I walk THROUGH the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

Another close friend, who had been in a similar grief the year before, told me how true this was. You have to walk THROUGH this. Do not skirt around it. Do not avoid it. Walk through it. That is harder now, but you are much better off in the long run.

I took this verse and this advice to heart. I still prayed, Oh God, for Him to deliver her. But at the same time Cash and I began to walk straight through that valley of the shadow of death. It is a very deep, dark pain. God is the only light pulling you out, and we clung to Him like we never knew how to before.

Day after day verses would pop into my head. I thought about my upbringing and how even more thankful I was now for being raised in a church that taught memorizing scripture. I guess in most of my life scripture memorization was more something to be proud of. That's how it was for me (not how I was taught--just selfish me), if I'm honest. I said memorized scripture in very opportune times to impress folks. But in these dark and difficult days I learned how important it is to know the scripture by heart; I wish I knew more. I held dearly the verses that friends would give to me and those that would come into my head. And I was ever thankful for parents who had me in church when the doors were open, for an Awanas program that taught scripture, and for Bible teachers and mentors all those years who repeated scripture daily.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Our Journey Through Fetal Medicine: An Infant Funeral

On the ultrasound the next day the doctor confirmed the blood tests: we were having a girl. I think it was that moment that it hit me. As the tech typed out "girl" on the screen and printed it for our file, I laid in a state of shock on the bed. My husband reached over and hugged me as I sat stone cold.

The doctor and his staff gave us a moment by ourselves. It was September 16. I had only known I was pregnant for 2 months. In that time I had gone from being sad about having a second baby to fearful for the second baby to mourning the loss of the second baby. The world had stopped but my mind kept racing.

The genetic counselor and doctor met with us after this. We did not say much except our wishes were to deliver her. I could barely handle the thought of someone stopping my baby's heartbeat, and I told them this. They assured us most parents do not go to the lengths of going to specialists in hopes they lose a child and that our wish was not only normal but would be taken very seriously. I also learned how very dependent I would be on the genetic counselor--we loved her so dearly.

We were given a few books that would help us in the coming weeks. My favorite one was titled When Hello Means Goodbye. Reading it that weekend began to give me peace. I read how I could honor her life and show her how much we loved her.

We decided to deliver her at 20 weeks. For us this was the best decision. When we weighed what her death would be like at 20 weeks versus 40 weeks, how Henry's life would be affected, our length of time to mourn, our future pregnancy plans, living through every stranger telling us congratulations as my belly grew--all of it made more sense at 20 weeks. Mostly we wanted to honor her, love her. Going full term with her would mean a chance of pain for her with an enlarged bladder (doctors cannot confirm fetal pain, but we felt it would be painful), a possible ruptured bladder at some point, dying of suffocation due to no lung development, and the development of Potter's Sequence due to lack of amniotic fluid. For us we did not feel that honored her.

My life changed a lot during this time. I had always been a huge proponent of pro-life. Obviously. I wanted my child. Of course I'm pro-life. When objections would be made for "medical abortions", I agreed sure that sounded nice but honestly never really thought anything like that was necessary. But when it's your baby and you have to make the decision all of those things become very real.

After meeting back up with the OB to discuss delivery plans, he kept using words such as "abortion" and "termination of the pregnancy." I said I would never abort my child. He said that that is exactly what we were doing, even if it was for medical purposes. And for good measure he explained we could not go to 20 weeks in Texas, because that was the limit on late-term abortion. We had to deliver at 19 weeks and a few days.

I cried a lot over this and contemplated going full term just so no one could say I aborted my child. But my husband brought me back and said we are here to love our little Ann Louise (a name given to her after her grandmother and great-grandmother), not the world. Who cares if some lawmaker calls it an abortion? We are making this choice because it is how we can best show our love.

He was right. It is just hard to conceive the thought. When you think you believe so strongly on a moral and ethical stance and that is changing to some degree, it is hard to wrap your thoughts around it. At the end of the day I knew I loved my daughter more than any lawmaker and his policies. Call it what you want--I wanted the best, most peaceful way for my baby girl to come into and out of this world. And my second major lesson I learned through this process was that as a parent you have to make the best choices you can make and not judge others when they make a different one.

To endure the pain I ironically found peace in funeral planning. We attend an Anglican church, and our priest created one of the most beautiful Eucharistic services I have ever read. We spent many hours pouring over songs and prayers and readings. I kept telling Cash, "This is the only thing I ever get to plan for my daughter. I want it to be perfect."

I'm not sure things got easier, but it did become more normal. I'm sure I spooked a few friends and strangers as I would so openly talk about Ann Louise's funeral. We reserved the beautiful chapel on the campus of our local college for October 22. I wanted desperately a black pillbox hat and veil to wear, and a lady in Japan custom made one for me. We scheduled hotels and meals for our family and friends who would be coming into town. And we met with a local funeral home who was to cremate her body.

People, even strangers, were so kind to reach out to us during this time. The genetic counselor had had the tech record Ann Louise's heartbeat and a group was going to sew this into a bear with the baby's name on it. Another group, the Now I Lay Me Down to Sleep Foundation, scheduled a free photo session in the hospital after she was born so we could always remember her precious face, hands, feet. The funeral home would come get her from the hospital, give us another chance to view her at the funeral home, and would cremate her for free. They also said a local flower shop would do our family flowers for free. The director of the chapel found out why we were reserving it, and she said she could not charge us because no parent should feel this pain.

Cards poured in. Friends sent flowers. We received texts and phone calls. My granny made black bows for the chapel. My friend Meredith dropped off a basket of fall goodies and a printout about not being scared of this year's election: she knows my heart. We knew we were so lifted in prayer and that the peace of God was the only thing getting us through. It is times like these you cling to your faith and your friends--because without either this life would not be durable.

I wrote my feelings down a couple times throughout these weeks. On September 19 I wrote,

"No birthday parties. No graduations. Or wedding. Or Miss America watch parties. Or shopping trips to Dallas. All she gets is a funeral. For eternity all I ever get to plan for my baby is a funeral. I want it to be perfect.

Her whole life. I will hold her for her whole life. And then I'm supposed to give her to the angels. Surely they will do better than me, but I wish I had the chance to prove that wrong."

Nothing in life prepares you when saying goodbye to a baby you are still carrying. As the genetic counselor told me, we were living every parent's worst nightmare. I finally got what my OB had said all those weeks ago that some things are worse than a miscarriage. Yes, indeed. Having to choose when your baby dies and knowing she will never live, that's as pretty low of a feeling as one can get in life.

The moments that hit me the hardest were when I would think about giving her lifeless body to the nurses and letting her go. I could not bear it. One night Cash was out dove hunting with his dad and Henry was asleep, so I was alone and listening to possible funeral songs. I began to weep uncontrollably. This was my every emotion coming to the surface. I could hardly breathe wondering how I would ever hand her back. How does a mother do that and survive?

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Our Journey Through Fetal Medicine: LUTO

Within two days we found ourselves sitting at the Regional Perinatal Center in Odessa, Texas. We were waiting to see both the specialist and a genetic counselor. By this time I had looked up our doctor and realized he was a specialist all right--he had previously been at Vanderbilt's fetal medicine program and his picture even was circulated via email several years ago for a surgery he performed in utero. I thought that was pretty cool; we pretty much had a famous doctor.

I had no idea what a genetic counselor was, but I was pretty sure we did not need a therapist so I was hoping to miss that appointment.

While waiting I started what would become a routine for us--to take a picture before every doctor's appointment. I wanted to document every step of this process. Plus, I was trying to take our mind's off of our fate. I was trying to capture the few times we could smile.

meeting the specialist for the first time

When we met our doctor, we were already in the midst of our ultrasound. He came in and took over the ultrasound. I was shocked. I had never seen the doctor do the ultrasound, but he guided it so easily.

As he was sitting down and shook our hands, he said, "Congratulations on the little boy!" We both laughed and said that we had not intended to find out the gender but now that he had told us, we thanked him. He was shocked. "You don't know the gender? We have to know the gender."

He began to explain that what our baby had was a rare condition called Lower Urinary Tract Obstruction, or LUTO. This most often is found in males, so it was presumed our baby was a boy. He wanted the blood tests we had already done to confirm that, but since we had not wanted to find out the gender this information was not included on our lab results.

The prognosis for LUTO was fair. If the baby was indeed a boy (which no one really even doubted), the doctor would draw fluid through an amniocentesis every 48 hours up to 3 times. If the kidneys showed function on that test, he would send us to Houston for a shunt to be placed in the baby's bladder that would act as a catheter until delivery. Upon delivery a minor surgery would be done to correct the blockage from the bladder. About 50% of these boys need dialysis/kidney transplants throughout life.

If the baby was a girl, it was fatal.

We tried to soak that in. It sounded pretty promising. We knew the baby would most likely be a boy. Its kidneys seemed to be functioning on ultrasound. And 50% isn't so bad--but in the big scheme of things, what is a kidney transplant? We went to church that night telling everyone to hope for a boy and that we were going to be leaving for Houston within the week.

The next morning I was about to start a new Bible study when my OB's office called. "Hey, they said you want to know the gender now."

"Yes! Please!"

"Congratulations, Avery, it's a little girl!"

"There is nothing they can do," I said as I dropped the phone.

Panicked I grabbed my stuff and got Henry from the nursery. Cash was in a meeting, and I could not get a call through to him. I finally texted "come home."

When he called me back, he was already crying. He knew. We were all in shock. How could this happen??? We had a condition less than 1% of babies get and in that 1% we have another 1% likelihood it is a girl. That isn't even real life.

I waited 5 hours to talk to someone at the perinatal center. It was only after I had screamed at the receptionist that I would not wait until the end of the day to talk to someone and hung up that the office manager called back. When I told her what was happening, she said the genetic counselor was in the NICU at the moment but our doctor would call us right back. And he did.

He told me how sorry he was about the fatal diagnosis. He wanted to do an ultrasound the next day to confirm the gender.

I called my OB's nurse back and asked her the accuracy of the blood tests. She said 99%. Cash and I agreed we had been 1%ers this whole time, so we would most likely get a different result on the ultrasound the next day.

Your mind plays lots of tricks on you when you are going through a crisis. For me I mostly felt denial. No way this was really happening. I would try to laugh with the doctors or make jokes. I could not let it sink in that we were losing our child.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Our Journey Through Fetal Medicine: Things Aren't Quite Right

After I found out I was pregnant, I immediately called my OB's office to get the ball rolling. I had been breastfeeding up until a few weeks before this, so I really had no idea how far along I was. Despite my pleas, the coordinator would not let me see the doctor until she felt I was at least 8 weeks. She would not even let me schedule it. I pushed pretty hard and kept saying she did not understand and that I did not really even know how far along I was. But she took it upon herself to tell me I was not far along enough yet and I would just have to wait.

My first lesson in this journey was to trust my instincts. I knew I needed to see the doctor. I knew. But after a bit of pushback, I did not want to be that mom who makes the OB's office hate her. So I waited.

The first appointment started out pretty standard. We went in and had to pay for the entire 9 months plus delivery up front and were herded through that process quickly as they see this routine day in and day out. I love (LOVE) our OB; but I felt like no one in the front office was sharing our experience. I was already a wreck, and when no one in the front office seems to care about the miracle they experience every day, it is a bit disheartening. But I was FINALLY there, and I was going to soak up this moment and this pregnancy. And I had vowed not to complain about pregnancy so much this time around.

We went into the ultrasound room knowing fully what to expect: to see our little baby so tiny and get the rush of love that flushes over you when you see the wee one for the first time. Except this time it was different. The tech began telling us everything she was looking at and measuring and finally said, "Are you sure you are only 8 weeks?" I said absolutely not. She said, "Okay, well, honey, congratulations. You are 11 weeks."

Praise! I had been so sick and this meant I was on the downhill slide. Plus, I had just basically skipped 3 weeks of pregnancy! Woohoo!

But then she told us that she was seeing something she had never seen before and would have to get the doctor. This was not that rush of love or excitement I experienced with Henry. This wasn't what happened ever. So we sat and waited for the doctor.

That day we learned the baby had fluid in its abdomen. The OB said this could be a range of things but only time would tell. We could be seeing anything from Down Syndrome to a fluke to a coming miscarriage. I will never forget what he told us next, "I may see you in the next few weeks due to a miscarriage. Please come to us; do not go to the ER. But remember this: there are worse things than a miscarriage."

I sat stunned. Luckily Cash had come with me that morning at the last minute. I held it together until we got to the car, and I just lost it. Miscarriage?! A genetic issue?! How could this happen to our little baby? I had not even appreciated the pregnancy fully yet. I was still reeling with Baby #2 guilt. And now this--I began to feel like the worst mother in the world for having guilt for being pregnant again. I also felt hopeless.

And how is anything worse than a miscarriage? I tried to see his point. At the time I thought I did. But what the next few months would show me was that I had no idea how right he was.

Once we got home I tried to call my mom. I may have gotten out 3 words before Cash had to take over the conversation. I was a wreck. I laid in bed the entire afternoon while my husband watched Henry and checked on me throughout the day.

My emotions were everywhere. We did not have another appointment for 4 more weeks to find out more what was happening. Within a week our blood tests came back showing us at a low risk for any genetic conditions. That felt like a huge relief. In my head I kept thinking, "Okay, I can do a surgery or two. Or maybe it's a fluke." By the time 4 weeks was up I was convinced it was a total fluke.

We prayed quite a bit during this time. My husband fasted twice. People called giving their support and saying they were praying for us. The morning of the appointment we sat as a family of 3 and my husband prayed over us. You have such confidence in that. You know God is hearing you. When those 4 long weeks were finally up, we went back to the OB. I was not worried. I had prayed so hard, and I just knew a miracle was going to happen and the doctor would say, "Oh, nevermind, it was a fluke." And life would go on.

But when the tech turned on the ultrasound machine, both Cash and I knew immediately. It had not been a fluke. No miracle had been performed. Our baby's bladder was now much bigger than its entire body. Even we saw that.

The OB came in and said how sorry he was that this was happening. He could tell the fluid was in the bladder (not the stomach) and thought it looked like Prune Belly Syndrome. But he said he was not a specialist in this so he was sending us to the perinatal center where doctors were more highly trained in fetal medicine.

I had no idea what had hit us. What? I thought my OB knew everything. Specialists? Who is more specialized than my OB? Not a fluke? I was pretty sure God had heard all those prayers.

And we thought things were super optimistic because it was the bladder. I googled Prune Belly Syndrome and found it was not a good prognosis, so I dismissed that readily. Yeah, our baby has some issues but goodness gracious they aren't that bad, I thought.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:

Our Journey Through Fetal Medicine: We're Expecting!

Today is October 14. Two weeks ago no doctor in the world would have thought I'd be sitting in my house on this day. Instead it was presumed I'd be living through every parent's worst nightmare at this very moment. But our journey to this day started several months ago. Here is where it began...

In early July my husband Cash and I were at home watching the Olympic Trials when I burst into tears for a track athlete who narrowly made the US Team after her third and final attempt. Cash looked at me and asked, "Are you pregnant?" I sure did not think so, but in my head I made a note to get a test the next day.

After Cash left for work, Henry (our then 8 month old) and I ran to Walgreens and picked up a test. I was not sold on the fact that I'd be pregnant. I had just stopped breastfeeding and knew certainly there was no way this was happening THIS fast. But once I got home it took .03 seconds for the stick to show two pink lines. I cried.

I was elated of course that Henry would be a big brother. I was also scared out of my mind and honestly mostly sad that I had not had much time with him by himself. I started getting mad at myself for not being more careful, yet my heart was already exploding with happiness as I thought of the addition to our family.

That afternoon we ran out to find a "big brother" shirt that he would wear to tell Cash we were pregnant. I quickly learned they do not make these shirts in size 6-9 months. Nope, they make those starting about 2T. I think that depressed me more knowing that even to clothes makers I should have waited another year and a half.

I saw a friend at the store and she asked what I was doing. With my tot on my hip I said, "I am a bit delusional right now. Like, literally, I just found out I was pregnant." She was ecstatic and had to reassure me that it would all be perfect and wonderful and not to fret.

Big Brother Henry

Eventually I got the 2T shirt and put it on Henry. He was asleep when his dad got home from work, but I could not stand not telling him. So I went and got H out of his crib and Cash just stared at the shirt for a minute and just said, "Wow." That's my husband's very emotional state. I had panicked all day not knowing what emotion to feel and all he came up with was a very mild "wow."

I told him he had to call his parents right then and invite them to dinner because I could not keep this a secret. After a solid 7 minutes of his mom holding Henry with his "big brother" shirt on (which felt like an eternity), she finally asked, "Are you pregnant?!" Ahhh! Yes!! I could finally talk about it.

coming March 2017

It was not long before we saw my family as well and were able to tell them. Of course everyone was thoroughly excited. All the while I still had that tinge of guilt. I think every parent does when #2 comes along--no matter how old your child is. But I remember sitting in Cash's lap some nights and just crying that I wasn't ready for Henry to not be my baby. These emotions, as real and raw and natural as they were, would ultimately haunt me and make me feel as though I was unappreciative and deserved so much of what was coming our way.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post: