Ella's story

Jay and I have been married almost 10 years, we have a 9 year old son named Cayden, aka "C".. when he was about 4 we decided to start trying to have another baby..we tried off and on and even tried some fertility treatments..it was so disappointing, but I had to keep reminding myself that it was all in God's timing.. November 07, we decided to go ahead and try again and if it didn't work, we would go back to discuss our options with our OB. December 08, we got some great news, we gave our parents both "baby's 1st Christmas bibs" with a note that said "hold til Christmas 2008"... my pregnancy was pretty easy (as far as pregnancy's go) We found out that we were having a little girl we bought tons of stuff and painted Caydens old sponge bob room into the cutest pink and brown nursery and Aug 21, 2008 we were introduced to Isabella Denise Magee.. most beautiful baby EVER... We couldn't stop staring at her...she was so perfect, we had no idea at that time that anything was wrong with her.. she was colicky for a while, but so good and sooo sweet and funny..

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 and I cried and cried for them. 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..

until 1 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 later 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..the 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 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.. 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 possible 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.. Feb 2, 2009 Dr Kayser called and told me it was mito for certain.. I held her and cried and cried.. 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 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..

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 C if he wanted to go with us and he said no.. Jay stayed home and my best friend Erin 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??

The next days were a blur.. The support from our friends, family and church was awesome.. Her service was beautiful and there were so many people there that cared about her and us.. in her short time on earth, she made a big difference.. to a lot of people..

We approach her 1st birthday and I think about all of the things I would be doing and arranging. I imagine picking a little onsie and tu-tu with a pink tiara out.. ordering the cutest cake ever.. laughing when she would dig in.. but that is a dream..she is not here.. the lord promises that he will get us through it.. and we are getting through..it is not easy, definately not fun..we all miss her so much.. Jay, Cayden and I cry for her frequently.. I asked Cayden a while back if he misses and thinks about her sometimes, and his reply was "if sometimes is everyday, then yes...sometimes I miss her" We are all angry and upset, but we were blessed to even know her on this earth.. she was such a blessing and we have so many wonderful memories.. We trust our Lord and his plan and cling to his words daily..

Job 1:21b
The Lord gave, and the Lord has taken away; blessed be the name of the Lord..

Jeremiah 10:19
Woe is me for my hurt! my wound is grievous; but I said, Truly this is a grief, and I must bear it.


Sweet Ella Bella~
we love you so much baby girl and can't believe you are gone..it makes me so sad to wake up each day with out you... I think about you all of the time.. Sunday as we were leaving for church I was thinking about you and looked down and saw a butterfly in your flowerbed that we made for you.. I told daddy to go back in and get the camera so we could take some pics.. it was beautiful..you were beautiful... God reminds us of how lucky we were to have you every time he reveals beauty on this earth..I miss you so much I can't stand it.. I wish you were here and healthy.. I can't wait to see you face to face again...until then..we'll think of you always.. miss you forever..
love~mommy