Hey guys, my name is Jess Pugmire. I am a Warrior, a fighter, a mother, a wife, and may I add, a candy-addict for kicks! I am a mother of one angel baby, and a little boy named Archie, who is 2 1/2. This blogpost I am writing, is about my hardships, experiences, and journey with my husband and me losing our first child, Annie.

On March 5, 2014, I was 31 weeks pregnant, thinking I would be having my daughter in May. Well.. that day changed everything - I started going into preterm labor. When I got to labor and delivery and started getting Annie's vitals checked, they realized her heart rate kept dropping drastically. The next day (March 6th) the Doctors let my husband and me know that the best thing to do at that point was to have an emergency C-section. They knew if Annie's heart rate kept dropping, she would pass away, and I would deliver a still-born.

So on March 6, 2014 I went into surgery for a C-section, not realizing what was going on. I was only 21, and was seriously confused, shocked, and almost feeling like this was all some sort of nightmare. After the surgery, I had to wait 3 1/2 hours before I could go meet my little girl. All I had seen were pictures of her from my husbands phone, and from what my husband was telling me, she came out blue, and they had to revive her and immediately get her on a breathing tube. 3 1/2 hours passed, and the nurses wheeled me up 3 floors to the NICU where I finally got to meet my Annie-girl. Right when I saw her, the love I felt for her was instant, and indescribable. Any parent would agree with me, that the love you feel and have for your children is something you'll never experience until you have your own child. I knew that Annie was special right when I met her, and knew that her journey in life would be hard, but that she would fight every step of the way -  and fight she did. She was transferred to Primary Children's Hospital in SLC, UT three days after being born, and there she fought every second of her 4 1/2 months of living.

 

Annie's genetic disorder was actually diagnosed 6 months after passing away, and is called "CLIFAHHD" or "Stuve-Weidmann Syndrome II". To go into further detail of what Annie experienced each day, and what my husband, our family, friends, and I witnessed everyday, is she had muscular dystrophy. So the best way to explain it, is she would have seizure-like episodes where all of her muscles would tense up, her heart rate would drop, and she would rhythmically move in motion. These episodes would last up to two minutes, and her vitals would drastically drop where she would even "Code Blue". Not to mention, she had these episodes happening 50-70 times a day. As a mother, seeing this happen to my daughter so very often hurt my heart and everything in my body so bad. I not only saw these episodes happen to her, but also had to see her go through surgery for a G-tube, and Tracheostomy. I also had to see her fight for air multiple times a day, and fight through every second. I had to see her get IV's in her head most days. I wasn't able to hold her for the first month of her life, because even the slightest movement would cause her to have an episode. And even when I did get to hold her, it was very rare. I had to say bye to her every single day, because I couldn't bring her home, and I feared every night that she wouldn't make it, and so much more.

 

On July 14, 2014, our sweet little Annie-girl took her last and final breath as my husband and I held her with tears in our eyes, love in our arms, and pain in our hearts. But we knew we would live with her again. I can't finish this post without sharing the faith and belief my husband and I have. We are Christians, and members of The Church of Jesus Christ of Latter-day Saints, and we believe in Eternal Families. So although this forever heartache and loss we experienced that night, and even today, we know we will live with our Annie-girl again, and although she is physically not with us right now, we feel her presence every single day.

I miss my Annie-girl every single day, and I know for a fact that she and our Lord and Savior blessed us two years later with our little boy, Archie. He has been such a light in mine and my husbands life, and is our little miracle. It is a 1% chance that we may get pregnant with another baby with Stuve-Weidmann Syndrome. So the spectrum and doctors have told us it's okay to try without doing genetic IVF, which is a blessing. For almost a year, my husband and I have tried getting pregnant, and I have had two miscarriages in the past six months. I have to look at the big picture, and realize that although it's another loss, maybe the two pregnancies I experienced had the Syndrome. I have to count my blessing, and although my husband and I yearn for another baby, we know it's in the Lord’s hands.

 

I can sit here and say I am a warrior all I want, but I can't say I didn't become a warrior without my little Annie-girl being the REAL warrior first, and teaching me life-long lessons and experiences that have helped me grow spiritually, mentally, emotionally, and even physically. I am so grateful for my warrior and fighter Annie, and dedicate my life to being the best I can be and not taking anything for granted. Because life is short, and we never know what tomorrow holds.

 

So, to my dear Annie, thank you. I love you and miss you forever.

 

To those of you who would like to read more about Annie's life, and story, visit: mydearestannie.blogspot.com