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: