May 24, 2011

A Review of Pregnancy....

Before I tell this story there is a specific audience I would like to address. If you are expecting a baby and you have stumbled onto this site while searching Arthrogryposis then this message is for you. I understand the road you are walking, I get it...I know the uncertainty and the fear and the relentless ache that accompanies the unknown. I am going to attempt to tell the story of our son's diagnosis and our experience thus far with AMC. Even though I am snuggling the joyous bundle in my arms it is still painful to think about the early days of diagnosis and all those months of uncertainty. You are walking a hard road but there are blessings even in the hard times. You are welcome to email me any questions you may have and for a true resource full of wonderful people go here!

When I suspected I was pregnant this time around I chose ignorance (or denial). I never took a pregnancy test and if I got nervous about expecting I would put it out of my head since I didn't know for sure. That was how I chose to deal with my situation. Not because I was in denial about the baby, but rather the opposite. I wanted another baby more than anything, but after 6 pregnancies that were heartbreaking in the last 4 years that was my way of coping.

Still in denial!

After it became quite apparent that this was in fact a sweet baby trying to grow into a still too big body. My ignorance turned to fervency. I prayed constantly that God would protect the life in my womb. I remember one day in particular not feeling so well and choosing to deal with it by laying very still with one hand protectively laying across my stomach pleading with God for this baby's life.

Wanting a hedge of protection, but not ready to share the news yet.

So that is the background to this story. A baby that was so wanted and who had a family ready to accept it and love the little one. So when a particular doctor suggested that maybe this baby shouldn't join our family - maybe the challenges that he would face were too great for this was time to turn from pleading to fighting.

Cautiously sharing the news.

Up to February 15, 2011 the pregnancy had gone exceedingly smooth. No problems that could be seen. All of our fears had been calmed and while we were quite aware that our baby could return to heaven at any moment we were somewhat calmed by all of the good reports from the doctors. In January we found out it was going to be a boy and we were just overwhelmed with thanks to God that all was going well.

4 months and all was well!

On February 15, 2011 we had our 20 week ultrasound scheduled (except I was really 21 weeks - it is my curse in life to be perpetually late!) I loaded myself and 4 kids into the car and drove the 40 minutes it takes to get to the hospital. We were all excited, it was going to be a fun day. Dad was going to take a long lunch and meet us...we were all going to catch a peak at our newest little guy on the ultrasound screen. After everything we had been through the magic in the air was undeniable! I had an ultrasound in the office the week before and everything looked wonderful I felt very confident about taking the kids and enjoying the time with our newest baby.

The moment that the wand found my belly we could see him moving around and happy in exciting. How great to greet our newest and last little baby. The kids were excited to see him and so was my husband and I. After the initial fun, the Dr needed to start taking measurements and taking care of business. So the kids watched for awhile but eventually excused themselves to the waiting room to break out books and coloring pages. This was going to take awhile. My sweet husband stayed awhile but was on a time crunch to get back for a meeting. Before he excused himself he asked the Dr if everything was OK or if he needed to be concerned about anything, the Dr. assured him that everything looked wonderful and that there was nothing to be concerned about. My husband smiled at me and said he needed to get back to work but was happy all was well.

Those sweet moments and words didn't last but a minute, before the Dr's face changed and I knew that look, I had seen it before and I braced myself. I can't remember the exact words that the Dr. said about something not being right with the baby. I can't pinpoint it in my mind when the wonderful ultrasound wasn't wonderful anymore. I just remember the feeling of drowning in shock and the room spinning a little. I remember small phrases like "poor profiling" and "you have heard of club feet" and "hands are staying in the same bent position."

I remember saying, "So you are saying that something is wrong....with the baby." He said yes, that moment I do remember. I felt numb and prickly. I cried. I tried to hold it together but I didn't feel well. I knew it was me and me alone to hold it together for my crew in the waiting room. Wow, the waiting room - how fortunate that they were all there and not in with me anymore. I was still crying. Telling myself to get a grip...relax...I went to the bathroom and washed my face, when I came out the Dr and his protege had left it was me alone in the ultrasound room, the room that started out with such excitement. I felt a little weak in the knees....take a deep breath, pull it together...I repeated it over and over.

I went to face the crowd with the best "OK let's go!" that I could. I'm not sure I fooled my oldest but she never lets on that she knows. I guess we are such kindred spirits that we know to respect the moments of shock. The Dr came and gave me memento pictures of the scan. I said thank you while trying to keep my voice from cracking and trying to talk over the lump in my throat.

We went to the car, we got in, we drove about a mile when my son said, "can't we play for awhile before heading home" I quickly agreed and found my way to the park. I feel like I crawled to a bench, but I'm sure I walked - they headed for the swings. I found my phone and dialed my husband but then hung up when I remembered his meeting. My fingers fumbled for a dear friends number and blurted the whole saga out in a rush. She listened and tried to soothe me but gave me the best present ever by promising to pray for us.

That night at home I tried and tried to research everything I could about hand positioning and poor profiling. I couldn't find anything about it. So I closed the computer and just waited.

2 days later I had a regular Dr's apt. My Dr. walked in and we exchanged niceties then we debated over the amount of Lovenox I should be on and then he said it didn't matter we had bigger things to discuss. The next thing he said to me was, "if this is what I think it is, then it is fatal." Fatal, as in incompatible with life. All I could think was nope this guy has no idea what he is talking about. I knew he was wrong and would just have to be shown that he was wrong. He also suggested that we could start over again and more than likely not face this problem again...that is when I KNEW he didn't have a clue what he was talking about.

I went home and decided we couldn't spend the day around the house. So I took the kids to Build A Bear and we made the baby a bear. It was a sweet bear that my son picked out for his brother and we each recorded I love you into the special sound chip. There was something therapeutic about making and buying that bear. It was at that moment that I knew we were going to prepare for this baby. We were going to buy and sew and knit and prepare for our special little guy. We were going to argue about names and we were going to carve out his special place in our home. We were having a baby and I wanted to be excited about it and not nervous about our baby's future.

At one point in the day my son came up to me with a sweet baby boy outfit and said, "Can we buy this for the new baby??? It has baseballs on it!" I almost melted into a puddle of tears and told him we would buy clothes a little later on; while silently pleading with God to please bless us with our baby.

My husband kept telling me that if it was something this serious the Dr's couldn't tell and make such a crazy assumption based on one ultrasound. We didn't even know what was wrong or have a clear definition! All we could do was pray and put a smile on our face for our kids. We had another ultrasound scheduled in a week!

Meanwhile I googled and searched and searched and googled until I came up with the only thing that fit the description, Arthrogryposis Multiplex Congenita. I signed up and waited to be accepted to the AMC Support group and when they accepted my request I bombarded them with questions and found a loving supportive group trying their best to answer all of my fears. They were an answer to prayer.

One week and one day later was February 23. We went to the Dr's office and before they would allow us the follow up ultrasound we had to first speak with genetics. We spent the hour explaining over and over that baby Timothy didn't present with these same findings - that was an excruciating appointment. Reliving our loss mixed with our apprehension for our little one was overwhelming, but we dug in and held on and finally got a, "hmmm...maybe you are right."

The ultrasound revealed much of the same with his hands still in a flexed position and bilateral clubbed feet. All of the problems centered around his joints and the Dr. finally said that if this didn't have anything to do with our past loss then the only thing he could diagnose was Arthrogryposis...I concurred with his finding...and the fighting began.

to be continued


Sally P-G said...

elizabeth, you are so brave and strong to share all of your experiences and emotions, I know you will give so much strength to others.

onemotherslove said...

In that 4 months photo, you look just like you did in college! : ) And I agree with Sally P-G!


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