Painful Endings…..

December 2012 was an exciting and scary month. We were excited to be pregnant but scared of another miscarriage. Nonetheless, our dreaming began. We were hoping for a healthy daughter. Michael and Teresa had found out their twins were going to be a boy and a girl. We imagined all types of shenanigans for them to get into. There was no doubt in anyone’s minds that this was going to be an exciting journey. Teresa’s sonograms and doctor visits showed healthy babies. Jon and I had decided to keep the pregnancy pretty quiet until we were around 20 weeks just to be sure everything was going well. We planned to start sharing in February.

In late January, Michael and Teresa’s dream came to a devastating end. Teresa’s water broke early. They rushed to a local hospital where she was evaluated and flown to Champaign NICU to give the babies every possible chance of survival. They were unable to stop her labor, and Samuel and Selah were born at 23 weeks on January 23, 2013. They were fighters. Samuel lived on this earth for three days and Selah for eight days. Our hearts were broken for our dear friends. This was not the end we had in mind for our dreams of parenting together.

I could not imagine Michael and Teresa (especially Teresa) wanting to be around us following the passing of Samuel and Selah. I especially did not want to go to the visitation with my little baby bump pushing my shirt out even though it was slight at the time. How do you face your friend who has just lost her children and you have not? In fact, your dreams are still very much alive, yet so altered. There was such a sadness and loneliness to my pregnancy the next few weeks. This was not the plan. This was not the dream. I was not supposed to go through this late in life pregnancy without my friend Teresa by my side going through the same thing (although, yes, she is a bit younger than me). I very much wanted to have our baby but it was not going to be the same without Samuel and Selah. Through tears of grace, our friendship remained constant through the tough first stages of Michael’s and Teresa’s grief.

9BC85B6B-As our pregnancy progressed, it was finally time for our sonogram around 20 weeks when we were to find out the sex of the baby and check the growth and development. Although we received the exciting news that we were expecting a little girl, we were told they could not view her heart as clearly as they wanted, so we were referred to another facility and provider for a more specialized sonogram. I lost my 5-year-old sister to a heart condition years ago. Hearing there was a question about our little girl’s heart was like a black knife of fear being birthed in my soul. I fought it. I celebrated with my family at the gender reveal all the while hearing those words echo over and over: “We can’t view the heart clearly. Her heart. Her heart.”

9C7AC66C-On March 4, 2013, after being on a bed for over 2 hours with a sono probe pressed to my belly here and there, I had a few beautiful 3-D photos of our little girl’s perfect face with a little turned-up nose and probably 8-10 photos of her feet which she continued to press against the probe no matter where it was. She definitely did not like it invading her space! Once the tech was finished and the doctor spent another 30-60 minutes reviewing the images, the doctor came into the room. She wanted to check just a few more images. Being a nurse, having had the genetics counselor talk prior to the extended sono, and having the fear grow inside me the longer it took, I had a dread of what was coming next. We were told our daughter had significant heart issues, a herniation in her diaphragm which was allowing her abdominal organs to go up into her chest cavity and cause an issue with lung development. All of this was further complicated by her small size for gestational age and the excess of amniotic fluid. Chances of carrying to term were considered highly unlikely and her heart and lungs were not compatible with life outside the womb. Basically, I was not expected to carry to term and she would not live long once she was born. To say we were devastated is an understatement. I am not sure how we even got to the car. I think we had to stop somewhere so I could throw up. I had so many missed calls and texts from Jon’s mom and my own mom. How were we supposed to tell them this news? How were we even supposed to deal with this?

Before we got home, I had plans to go shop for a pretty little premie outfit to bury our little girl in. I was trying to talk about who would do the funeral service and where she would be buried. Jon was having none of that. He was not giving up. God did not bring us this far to leave us with no hope. We weren’t even supposed to be pregnant so we had to keep hoping until there was no reason to hope.

We got through the first devastating days of the prognosis and continued to see different specialists including fetal cardiology in Springfield and then St. Louis Children’s Hospital. We were at one place or the other every 2-4 weeks for repeat sonograms to check Lucy’s development and weight. Honestly, at every sono and doctor’s visit, something positive was reported. The best day for us was when the fetal cardiologist at St. Louis Children’s told us that although the left side of her heart was smaller than the right, it was functioning properly. We were just dealing with lungs and diaphragmatic hernia now. There was hope.

Through all of this, Michael and Teresa were two of our biggest supporters and sources of encouragement. Randy reminded us of his and Gina’s own daughter’s health issues early in her life. Everyday we had encounters with people or physicians who encouraged us to keep our hope and faith alive. I remember a friend who years ago had struggled with infertility for years and finally had gotten pregnant telling me that she was going to enjoy every minute of her pregnancy no matter how long it lasted because it was a miracle she was even pregnant. I adopted her mindset. With every doctor visit, every kick of Lucy’s little feet, and yes, even every episode of morning sickness (which never ends for me during pregnancy), I was thankful for every pound I gained, every cramp I felt, every day that I got to keep my little girl inside me one more day.

C0B4A5FE-We made it to 35 weeks and four days. The plan was to not let me go past 38 or 39 weeks as long as Lucy was 4 pounds. We had some time to go as she was still just under three pounds at 34 weeks. I went into labor on June 18 and was flown from St. John’s hospital to Barnes in St. Louis. Lucy was born a little after 4 o’clock in the afternoon. She was so tiny. Her tummy so flat. I got to see her kick her legs once they had her intubated and were breathing for her.  One of my favorite photos of her is when she is wrinkling her nose and forehead as they are placing the g-tube in her nose. They rushed her to the NICU. Her lungs were unable to handle the pressure of breathing and collapsed multiple times. They were unable to keep her lungs working.

Once I was able to be with her, they placed her in my arms, and we watched another dream die.

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About hopehouseofcentralillinois

I am one of 6 parents of loss who had an idea to help other parents navigate the tidal wave of grief following the loss of a child; to try to help them find a ray of hope in their new normal..

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