Friday, August 13, 2010

Mom to Ella 
Born on Aug 21, 2008 and passed away on May 19th, 2009
Collinsville, OK

~~~~~~~~~~~ psalm 126:5 They that sow in tears shall reap in joy

I met my husband Jay when we were teenagers in the youth group together. We went on our first date on my 16th birthday. We were married and had our first child Cayden, when we were 19 years old. Our very own conception that we were somehow invincible was quickly changed to what now? We have this kid, just finished high school, what have we done? We knew we loved each other very much and knew that the Lord was good and would provide us what we needed. Boy did he, and so much more then we could have ever asked for.

We loved our son so much and decided when he was around 4 years old, that it was time for another baby. We tried on our own and no luck, we sought out our OB and had a few runs with fertility drugs and no luck again. Finally in Nov 2007, we were going to try again on our own for a few months, and if we did not succeed that we would seek more aggressive fertility measures. Dec 2007 I started to not feel so well, extremely fatigued and so nauseous. I took a pregnancy test and to our delight it was positive!! The Lord has finally answered our prayers.

The pregnancy was very normal, easy, and uneventful. I had a few friends who were expecting with me at the beginning, and one by one, they each lost their miracles to miscarriage. I had a fear deep in the pit of my stomach that something was not right. I attributed it to my friends losses and mentioned my fear to no one. We found out at 19 weeks that we were having a girl!! We did some rearranging and painting, and waited for our arrival.

On Aug 21st 2008, our daughter Isabella Denise was born and our joy was at an all time high. We loved her instantly. In my stomach though, something still was not right. She was small but otherwise healthy. The 1st few months flew by, she wasn't a great sleeper, never had great neck control, but she ate okay and seemed to be fine. I just had this feeling that something was not right. Our friends lost a baby to SIDS in November. She was only a month older than Ella. My parents immediately went out and bought and angel care monitor... this was one less thing to worry about. She got over the colic and was perfect and perfectly healthy, or so we thought.

Until one day. December 30,2008 we took her into a small local hospital. She had been up all night crying and not tolerating her feeds. She had been seen a few days earlier and diagnosed with an ear infection. I figured she had a stomach bug or intolerance to the antibiotics and needed some IV hydration, which I did not love, but knew sometimes it happens, especially in infants.....they just get dehydrated so fast. They had her in the hospital ER room for about 3 hours and did a belly xray and thought something was wrong that had a simple fix, but needed to go to the childrens hospital since they would have the right equipment needed to correct it. We got to the ER via ambulance and immediately there was a team of nurses and doctors on her. I heard the doctor say "that's not it, there is something else wrong" I sat in the corner and wept. He told us they were sending her upstairs to be admitted and that they would take over the care and find out what is wrong and so by this time our families are there with us and they told us where to go and they were off with her, literally running her in the bed. So we get upstairs and it is the pediatric ICU, we did not know it was the ICU. They wouldn't let us back for a minute and finally let me and Jay in. The doctor came in and said they need to do a catscan because her soft spot was so tight and were going to do a spinal tap, they suspected meningitis. We went back out to the waiting room and I went to the bathroom and cried and cried. I KNOW meningitis can be cured if it is bacterial and know viral is just something she gets over. Something in my stomach, that I can not explain told me it was more, my heart was breaking. Jay came in and tried to comfort me and I just said "what if it can't be fixed, what if its more??" We just prayed and wept together... the spinal tap came back "milky" she stayed in the ICU for several days and was transferred to the 3rd floor. They treated her for meningitis and on day 10 of the antibiotics, her liver function was high. They said it could possibly be from the antibiotics and other meds after a week of them going up...what could possibly cause this?

Jay and I told the doctors about Jays cousin Amy losing her 2 babies to a genetic disease, mitochondrial DNA depletion. We got all of the information and they called in the geneticist. He said it is so unlikely that Amy and Jay would both marry carriers of this disease, but he wasn't sure. Liver and muscle biopsies were done and we finally got to come home and wait on Labs and results. She seemed to be getting better, so I convinced myself she was okay, but I knew deep in my heart that it wasn't good. On Feb 2, 2009, our geneticist called and told me it was mito for certain. I held her and bawled my eyes out, screaming at God for breaking my heart. I knew the prognosis and I was NOT going to let my baby go!! Jay got home from work and I told him. We looked up everything we could find and more on Mitochondrial DNA depletion and Alpers,  none of them good. We prayed and prayed and she seemed as though she was getting better, even her labs were in the normal range again. She was not taking in as much as she needed to gain appropriate weight, so in March we had a feeding tube placed, everything went fine and we came home as scheduled. I woke up in the middle of the night and she was twitching on one side so we took her into the childrens ER once again and she was indeed having seizures. Everything went downhill after that. She was in and out of the hospital and we had hospice involved. The meds needed to control the seizures sedated her and slowed her breathing, but without them, the seizures were intolerable. We prayed for God to heal her. I selfishly prayed for God to take me first, I knew I could not live through the loss that was about to come. I knew that feeling in my stomach was there for a reason, from so early on. I knew we weren't going to get to keep her.

Sunday, May 17th, her breathing was different, she was cooing and opening her eyes. I prayed she was getting better, but I knew she was rallying. I called in Sheila our hospice nurse and she sat with us until after 1am. I needed to tell Cayden before I took her to the hospital that she was not coming home this time. Monday we woke up and asked our son if he wanted to go with us and he said no. My husband stayed home and my best friend took me and her in. She was admitted to the 3rd floor again and once we were all settled, Jay and Cayden came up, as well as all of our family members and best friends. She cooed and was making such sweet sounds still....angels tickling her feet maybe? She was stable in breathing and heart rate. Everyone finally left around midnight, Jay took Cayden home to sleep and was going to come in early Tuesday morning. All night she was stable, Erin stayed the night with me there, they would come and check on her hourly and we would just look at each other and randomly talk. Jay called and I asked him to bring the laptop with him so I could update everyone on how she was doing. I thought we had more time. About 8:40am her breathing slowed and we called the nurse in. In a matter of minutes her pulse dropped to somewhere in the 20's! I knew Jay would not make it in time...I prayed for her to hang on, but she slipped away. I remember each person coming in and having to tell them she was gone. After a few minutes of hysterics, I was numb and everything became 1 bad dream. Cayden took it pretty well. I am so thankful for the support we had that day. We sat and held her for hours....crying, laughing and loving on her. Jay handed her to the pastor of the funeral home who came to pick her up, and it was the hardest thing he has ever done, and the worst thing I've ever witnessed....its as though I literally saw his heart shatter and I couldn't move. I just stood there.. then it was time to go and I froze. Was I really leaving the hospital without my baby??

It's been 15 months since she left. In just a week or so, she should be turning 2. I think of the things that we'd be doing if she were here and it breaks my heart. We mourn for the daughter we lost, and also for the daughter she would have been. 15 months and I still have days where its just too much, and I want to stay in bed and pretend this never happened. I allow myself time to miss her, to cry for her, but I am also to a place now where I can smile when I think of her. She was so sassy, and so bossy at such a young age. I don't know why the Lord decided not to heal her, and nothing on this Earth will ever be 'worth' losing her, but I have to trust there is a plan in motion, that there is a reason and one day it will all be revealed. As for now, we help the kids we can help and try to honor her memory each and every single day. We wait for that joy that's been promised. We've sowed enough tears for about 10 lifetimes....its gotta be getting here soon

Jen blogs at
Jen can be reached at


Anonymous said...

I too lost my baby girl recently to suspected mitochondrial disease...

You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you. -Matthew 5:4 (The Message) May the Lord comfort us who mourn. *Hug*
-from a sister in Christ

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