My Baby

This will be the last post about our birth history. I'm looking forward to writing about the daily miracles that have been happening lately.

November 2013

Right when I thought I knew what was going to happen in my life, God pitched us another curve ball.



I finally made the phone call to the maternal fetal specialist. I had been dreading it for weeks. After the Houston doctors told us the terrible news, we decided we needed a break from the weekly doctor appointments filled with more loss and hurt. We decided a month was long enough and I needed to go back and make sure no new developments had occurred. I still felt pregnant but there was only one way to know for sure..so I bit the bullet and made the appointment.

I remember having one of those moments (that I mentioned in the last post) where I felt like God was giving me a message. As I was driving to work the morning of my appointment I felt God saying, "Let go of the fear..what is left to fear? I am with you and will bring you through anything the world throws at you."

Again.... its not like I heard God's voice... It is something that touches your heart and simultaneously makes you feel like the smartest person in the universe because you suddenly understand something so clearly  that  had just seconds before been a jumbled up mess in your head. Then you know you will never be able to accurately explain what just happened! It's an amazing thing.

When I got that message....I still NEVER saw what was coming. I was under the impression that my son was not going to make it... but that God would someone get us through it.

We got to the appointment and as soon as I saw my baby on the screen tears welled up in my eyes. His perfect little heart was beating strong and his bladder that had been so huge for so long... was no longer 4 times the size of his head..in fact I couldn't tell the stomach from the bladder (After you have an ultrasound every week you pretty much are a professional at  labeling the anatomy of your baby) My heart was pounding and Donny and I didn't speak to one another. I remember feeling like if I made any sudden movement or spoke too loudly it would all go away.... or not be real.
Donny pointed out the bladder and asked the sonographer what the measurements were. It was the size of a "regular" baby bladder.... we still didn't get too excited because we hadn't spoke with a doctor yet.

When our doctor walked in we all had a .."ummmm....is this really happening" moment. Then he told Donny and I that this was a game changer. All the life threatening issues had been resolved. No more worrying about the lungs not having room to develop... or the heart being crushed... and the kidneys didn't appear to have any dilation...WOW..

The rest is history. My baby was born at 32 weeks gestation. He weighed 4lbs 30z. He has some challenges with mobility but his kidneys and everything else were wonderful. God blessed us greatly. Thank you to all that prayed and continue to pray for our William.
He has a chronic condition known as Eagle Barrett Syndrome. We have to monitor his kidneys very closely. A very large portion of people with this Syndrome end up needing a kidney transplant at some point in their life. He also has Arthrogryposis (or AMC) which is the mobility disorder. He makes progress every day! I can't wait to share our stories with you.

fear

When you have lost all hope you try to understand why. Knowing that my son would die was not easy. I would wake up each morning wondering if he had passed. If I didn't feel sick or have heartburn I would automatically think he was gone.

On my way to work I would call my mom and just cry. I wouldn't say anything..I would just cry.
On the weekends I would stay in bed and Donny would walk in to check on me and I would be curled up in ball sobbing uncontrollably. I wasn't strong enough for this.

Finally, I told God how incredibly mad I was.
"Why would you do this to us?"

I realized I was going to have to search for answers.


I began to really read my bible and talk with God and pray. Like I have said before, I was not praying for a miracle. I was praying that we would one day understand why people have to go through things like this.

I remember before any of this happened..when I would hear about other tragedies I would automatically start to try and figure out why.

Maybe they did something to deserve this.

I hate to even admit thinking things like that because now I know how ignorant I was. I think I tricked myself into believing that to make myself feel safe. Because in my mind I thought as long as you are good, that good things will happen to you.

Of course I knew better...but in my mind I would try to put the pieces together to try and make sense of it all.

Now I know that some things aren't meant to be understood because our simple minds really can't comprehend the bigger picture. I don't believe God causes bad things to happen to punish us...but he does use them to change us in some way.

Once I came to that realization I decided that I wouldn't let my son's memory be in vain. I had to change for the better. For him. I didn't want to be bitter.
A great friend came over to talk with me one day. She had been through a similar experience and told me she had to learn how to mother her babies in a non physical sense. That really touched me and changed the outlook I had. I was still going to be a mom and there was no way I could do my son the disservice of being depressed and bitter.

I couldn't fear anymore. There was nothing left to fear. There was nothing I could do but ride out the storm and just continue to talk with God and hope he would reciprocate.

Oddly enough ....I began to feel God speaking to me. (OKAY people...I know what you are thinking.  Don't roll your eyes because I hear they can get stuck that way.)
It wasn't like he was sitting next to me carrying on a conversation. Actually most of the time it happened when I wasn't even praying. I remember specifically asking God a question about a friend and why she was having to go through a certain situation. Like 3 days later I was on my way to a football game and it was like a light bulb went off in my head with the most profound thought! It was out of NO WHERE. I knew I did NOT come up with that thought on my own. It  connected to scripture and answered my question perfectly! It was a divine understanding that I had never experienced before.

I'm still waiting for some of my questions to be answered ...all in good time I'm sure.

Amniocentesis

The amniocentesis results came back on my birthday.

The day we had the test done, we were told that our baby had gone from having an 80% chance of survival to less than 5%.
“Could a miracle happen? Sure” , as our doctor put it.

She called me and told me no chromosomal issues popped up on the test.
I didn’t know if this was a good thing or a bad thing.

Throughout the wait period I spoke repeatedly with one of the strongest women I have ever known. Her baby has a condition known as Trisomy 13.
Before the results came in, our doctor thought our baby would have this syndrome. My friend had given me so much strength through this period…strength to know that we could handle whatever came our way.

The unknown was scary to me.

We went to Houston to get a second opinion….we were told I would most likely carry my baby to term and that “he” would die shortly after. He would have kidney failure and his lungs would not develop. His heart could be crushed. What a great way to find out we were having a boy.

You name it…we heard it.

When I found out I was pregnant, I immediately thought of baby showers and gender reveal parties….newborn pictures….the works.

Looking back on that moment makes me see how selfish human nature makes us…I wanted all of those experiences. I didn’t even think about me actually being responsible for another life  (if I’m being completely honest). I mean sure, I couldn’t wait to hold my baby in my arms, but I never really thought about what it would mean to be a mom.

First smile. First laugh. First word. First step.

These missed moments would soon be the only things I could think about. The thought of missing all these things with my little baby. I tried to tell myself that God needed my baby more than I did. But I felt like that was a total cop out.

I found myself afraid to pray. Afraid of drifting farther from God.
I found out what it was like to have to plan your child’s funeral and pick out the clothes they would wear.

But , during this time I also found out what it meant to be in the body of Christ.
I found out that all people have specific gifts given to them by God to share with others in their time of need.
I found out how strong my husband was, and how when I couldn’t find the strength to pray he would do it for me.
I found out that people are so good.
I found out that it is okay to question God and seek answers.
I found out that no matter what happens in life, God loves us.

I found out that what others go through and overcome help us know that we can in fact come back from life altering situations.

I wish I could say that I always had great faith that God would answer my prayers. Even the ones I was afraid to pray. But I didn’t. But what I know is that other people had the faith I wasn’t strong enough to have.

Throat Punched...

We were told to make weekly appointments with our high risk doctor so we could keep an eye on the bladder and make sure my amniotic fluid levels didn’t drop below normal range.

So, the next week I told Donny to go ahead and go to work and my dad came to the appointment with me.

I’m a teacher and after talking with my principal, she arranged for me to have a ½ day sub so that I could go to the appointment.

We go in and have the ultrasound. I notice that the bladder has not really changed one way or the other which was good. I had been praying for God to completely heal this situation. But…he hadn’t. But, the situation hadn’t gotten any worse from what I could tell…..My baby was moving his head and wiggling around. He had a good heartbeat.

Then….the doctor came in. She told us that she was concerned because my baby wasn’t moving its limbs. She also could tell that the hands weren’t forming properly. This led her to believe our baby had a nerve disorder and therefore probably would not be a candidate for the shunt surgery.

I felt like I was punched in the stomach. Why was this happening to us?

We were told that we should have an amniocentesis to determine if there was any chromosomal issue going on. We were reluctant to do so, but decided that on the off chance nothing showed up, we might still be able to have the shunt surgery to help our little one.

Our doctor told us we should probably hope to have a chromosomal issue because then the change of it happening in future pregnancies would be less than 1%. …………….thanks

Our baby’s chance of survival went down tremendously.

Needless to say, I was a complete mess. I didn’t return to work that day.

 I had to wait until I was 17 or 18 weeks (I can’t remember exactly) to have the amniocentesis.

By this time , my baby’s bladder was about 4 times the size of its head.

I went home and prayed. I was praying for a miracle at this point.
“God please heel my baby if it be your will. If this is not your will please help me understand why. Please give us peace through this time.”

So it Begins

We went to the high risk doctor on the following Monday. We found out our baby had a bladder outlet obstruction. This basically causes a baby’s bladder to enlarge in the womb because there is something obstructing the amniotic fluid from exiting the bladder. We were told all in all we had an 80% chance of survival and that we might need to travel to Houston to have a shunt surgery done at around 18 weeks pregnant. The shunt surgery would relieve the bladder and hopefully resolve the obstruction. This would prevent kidney damage (hopefully) and give the lungs room to develop.

I wasn’t thrilled about this news. BUT, we had a plan and I knew that otherwise, he was still a healthy baby and we had a plan moving forward.

The very next week….that changed.

New Chapter

New Chapter
Last July Donny and I found out some great news...we were pregnant! We talked about trying to get pregnant, but we really didn't plan on it happening right away. It did and we were in a bit of the ..."What have we gotten ourselves into" phase.  We were ecstatic nonetheless.

I was so SICK. I always thought pregnant women were exaggerating a bit. Well so sorry for doubting you ladies! All through August, September and part of October I got what I deserved :).

Right around 13 weeks into my pregnancy we went in on a Friday for a routine appointment and found out there was something abnormal going on. Our doctor couldn't get a good look so she sent us to a high risk doctor to really see what was going on with our baby. Waiting over the weekend was terrible, but I was sure everything was fine. In fact, walking to the door with every bag of groceries I had bough that Saturday my hands were full and I had to drop a couple bags to find my keys (I make it my mission in life to NOT have to make a second trip to my car to unload groceries). As I was looking through my purse I swear it was one of the rare moments I felt like God was sending me a direct message. "Do not fear."

It was easy to believe then that everything would in fact be fine and that I was worrying over nothing. But soon, every glimmer of hope we had for our son would slowly fade away.

Why

                                                                  Our Story

Before I begin, I would like to recognize two angel babies that helped my husband and I so much throughout this process....Ean and Isabelle your short life matters so much to me.  William might not be here right now if your story wasn't shared.

Creating this blog has been much more difficult than I intended. I have struggled with how to begin for the past few months. Even before we had our little nugget, I wanted to write his story. But to begin, I think it is important to look at my husband, Donny and myself.

As we go deeper into our journey and people read our story, I think it is important for the outside world to get a good feeling for who we are as a couple.  

Christians are perfect people, or at least that's what they think, right?
I used to think that....

Well please wipe that picture you have of a perfect couple out of your head.

We try. That's really all I can say....we try our best from day to day to live in a way to please God.

We fail..........................................................................All. the. time.

I'm not saying that just to say it...........

We fail like crazy people from day to day.Whether it be jealousy, greed, or lack of faith.

But William has brought us so far. Because of this little boy we have been able to understand so much more about life, death, and God's love.

If I haven't already bored you....read on...