This will probably be the most honest and vulnerable post I have ever made. My husband and I have so greatly appreciated all of your prayers and I know it is prayer that has pulled us out of so much. And now I am asking everyone again to please pray with us as I feel we need it now, more than ever.
Yesterday, March 11, 2014, we had an appointment with a specialist and a genetics counselor. This appointment was scheduled for us to have another level 2 ultrasound to see how Jude is growing. The ultrasound took awhile and we actually had four different people come in to take a look and measure him. That alone made me begin to worry and wonder if they were seeing something that wasn’t there before. After they were done measuring, they told us they were going to take a look at the ultrasound scans and would come back shortly. We ended up waiting in there for quite sometime for them to return which obviously was pretty nerve racking.
As most of you know, earlier on in my pregnancy, they started to see that Jude was lagging behind in growth. After many ultrasounds and appointments with specialists and genetics counselors, they diagnosed Jude with a form of skeletal dysplasia called acondroplasia. My husband and I had never even heard about it so naturally we became pretty scared and confused. After several months of researching and also speaking with many parents who had children with this exact condition, I began finding so many encouraging stories that gave me hope. And I actually felt my heart beginning to prepare itself for this. I spent hours upon hours reading and studying this. Yes, I believe in miracles and healing but I found it would be wise to prepare myself for either outcome. It felt better knowing what it was than still being stuck in the unknown.
So, back to our appointment yesterday. The specialist and genetics counselor finally returned and I could honestly tell immediately just by looking at their faces that the news wasn’t going to be easy. The very first thing they told us was that Jude was growing very slowly. I am currently a little over 34 weeks pregnant and his measurements showed that his arms were that of a 21 week old baby and his legs were at 26 weeks. My last ultrasound was a little over two weeks before this one and he was only showing two days worth of growth in that time span. This is the slowest we have seen him grow yet. They then told us that they were not seeing a diagnosis of Acondroplasia. That was shocking to hear as we have been told for months that this is what he had.
So we began to question, is this a good thing? Then the most shocking words came out of the doctors mouth “we are seeing a more severe form of skeletal dysplasia than Acondroplasia” those words were like a knife in my chest. At that point I didn’t really have any words to respond with. She began telling us that she didn’t know what type of Skeletal Dysplasia she was seeing and also giving us indications on how she realized it wasn’t what we originally thought. The genetics counselor was brutally honest with us and informed us that this was not good news because acondroplasia is actually the more common and mild form of dwarfism. She even said, “This is what you would want over any other form”. I think it was then that I felt like my heart dropped into my stomach.
My mind started racing and I could feel fear trying to take over. All I could hear in my head was “my poor baby”. Then the questioning in my head began, what am I supposed to do with this? How do I prepare for the unknown? What is this? Why is this happening? Will he be ok? There is honestly nothing more terrifying than walking completely blinded into the unknown. And there we were again.
The genetics couselor then began telling us that we need to spend time preparing ourselves. She said she can’t tell us exactly what this will look like but she wanted us to prepare for things they commonly see in severe forms of dwarfism. She then began naming different things, learning disabilities, problems with motor skills such as crippling and lastly she named the possibility that it could be lethal or lead to a shorter lifespan. Sick to my stomach was all I felt. Those are not easy words to take in at all. Total fear was set in. Then, I had decided in my mind, NO! I cannot prepare myself for such things! I serve a big God who has shown himself faithful time after time. This is our Brave Little Warrior and we have seen him fight through so much already.
Do I deal with fear and confusion? Absolutely! But I also have faith and hope. We are standing in agreement that Jude will LIVE and that he will grow grow grow. Please stand with us in agreement for our Brave Little Warrior baby, We love you all so much! I can’t even began to convey how much we cherish your prayers and support.
I am not sure if all of my blog followers are aware of the current events that have taken place, due to the fact that I haven’t been able to post all the updates. So let me quickly fill you in. On February 22, during my amazing baby shower, my water broke and I suffered a placental abruption which caused major hemorrhaging. I was rushed to the hospital by ambulance and was told that they would be preparing me for an emergency c-section. At that time, my family began posting updates and asking for prayer and the prayers worked! They then decided they wanted to try and keep the baby in the womb for 24 hours and give me steroid shots to help his lungs develop. More and more prayers came in and 24 hours went to 48! Then 72 hours went to 2 weeks! And by the grace of God and the power of prayer, after spending 9 days in the hospital, I am now home on bed rest with some light activity and they plan on trying to get me to carry to full term, as it is very crucial for Jude to have more time to grow. What an amazing God we serve! There is a lot more to the story and my sister Amber Rhodes made a Facebook page for Jude and has done an incredible job keeping everyone updated. For more information and further details and updates, please visit this page Praying for Jude Sullivan Peters
Thank you again for all of your prayers and words of support and encouragement. I would also like to thank The Parents of Little People of America Association, Understanding Dwarfism Group and all of the individual parents who have reached out to me with love, answers to many questions and prayers. I have discovered a strong, loving and helpful community in them. I would also like to thank Megan Sewell for starting a GoFundMe page for Jude and for the countless people who have so generously donated to him. I find words are inadequate to convey our gratitude. Thank you all for taking the time to read this and pray. We have never felt so surrounded by love and encouragement in our lives and we consider ourselves highly blessed.