All About Ella

December 08, we got some great news,  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 spongebob room into the cutest pink and brown nursery and Aug 21, 2008 we were introduced to Isabella Denise .. 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 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 remember just weeping 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..and still so beautiful.

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 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 not it, there is something else wrong" I sat in the corner and crumbled to tiny broken pieces, 'breathe, trust God to take care of her' I told myself repeatedly.. The ER dr told us they were sending her upstairs to be admitted and that they would take over the care and find out what is wrong..I could see concern in his face..'stop being paranoid, she is fine'.. By this time our families are there with us and they told us where to go and they were off with her..2 nurses literally running her in the 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 few minutes 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 lost my ever lovin' mind.. I KNOW meningitis can be cured if it is bacterial and know viral is just something she gets over.. that dr's face..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?? Oh dear God, what if she dies?!" we just prayed and wept together.. We composed ourselves and went back to sit with her..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 she had been given.. after a week of them going up.. what could possibly cause this?

We 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 memorized her entire face one more time..she is so perfect, how can she possibly be so sick?  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 put our faith in the Lord and she was getting better, she was laughing, smiling and cooing!! even her labs were in the normal range again.. She was not taking in as much formula as she needed to gain the 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..her tongue was clicking and she looked scared.. 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!  Please hang on baby, at least until Daddy gets here, but 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..the nurses got him a drink and turned on the TV for him in the empty room next door.."no crying in front of me" was his rule.. 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.. and then it was time to go and I froze..was I really leaving the hospital without my baby??

The next days were a blur.. cry, sleep, cry, sleep some more.. 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 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.

here is Ella's video montage that I made and showed at her funeral..

Sweet Ella Bella~
we love you so much baby girl  and can't believe you are 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 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..

Ella in the beginning Aug 2008

this is what true love looks like!

3 month pics!

The next few are right before her diagnosis..Dec 2008

After diagnosis, but still doing well..

6 month Birthday  Feb 2009:)

Once the horrible seizure monster took over.. April 2009

6 days before she left us..May 2009


karen said...

i don't know how i stumbled upon your blog, we lost our daughter at birth, i guess i was looking for something to connect to....your post about your dear little ella's passing, well, i care for others, i have love for others, but i felt your pain in a way that i don't know i have even felt my own...i have been crying all night, broken hearted for yours...i just wanted you to know that, i don't know why, perhaps it's god's whisper that if i can feel your pain so acutely, then he knows your pain too... sincerely, Karen

Andrea said...

I just read your story on faces of loss. I so sorry for your loss. Your daughter is beautiful and my heart breaks for you. Thank you for sharing her story.

*BTW I was helping Kirstin upload stories to the site and I was still logged in under her when I made the comment above. Hence why I deleted it. Sorry about that.

Jaclyn said...

hi Jen, I have just read your story and blog page and its very heart warming. Your daughter was so so beautiful and the sad picture of her 4 days before she left is the one of the most profouned and heart wretching picutre i have ever seen and has a deep inpact on me. a local boy near me has Alpers and im hoping to start helping with his cause. I am a mother of 21 month old little girl and cannot beleive at 31 i know nothing about this dreadful disease. my prayers are with you in your new journey and im sure you will give this little girl all the love in world. Jaclyn. x

Tiffany said...

i'm in tears. i'm so sorry for the loss of your precious Ella. i'm so so sorry. it's just not right to lose a child. ever.

katery said...

this is my wort.nightmare. i am SO sorry for your loss, i cannot even fathom.

Mary said...

You're right...she is the most beautiful baby in the world. I'm so sorry you had to say goodbye too soon. :(

Helene said...

This is heart breaking. I'm so so sorry your little girl isn't in your loving arms, where she belongs. Life is so extremely cruel at times...

rachael said...

I just read Ella's story for the first time. I have been typing things into google all night,like, 'help with grief' 'grief support groups'..i typed in 'my toddler passed away' and found your blog.
I cried throughout her whole story, at some parts harder than others, and at some points i laughed as i cried.. noone can say that they understand how another person feels, but i can relate.
i lost my 18 month old almost exactly one year ago. It will be one year on the tenth. She was not sick at all, she suffocated at daycare. Like you, I miss my angel every single day and I know she is in heaven. I laughed and cried so hard at your quote about thinking of her in heaven, with all of her little friends. Such a beautiful image. So precious. My daughter's name was Alahna Ann.. I miss her so, so, so very much every single day, and with every beat of my heart. I am 19 years old, and I am also 9 months pregnant, and will give birth to a new daughter in September. I turn to the internet in grief I suppose because I don't really have anyone to talk to about my grief.. I do not have much family or support, so im sorry to ramble on.
I ust want to say thank you for sharing your story, and that it, and Ella, are very beautiful. I bet our girls are the prettiest angels in heaven :)


conceptionallychallenged said...

I'm so very sorry for your loss. Your daughter was beautiful.