Tuesday, August 18, 2009

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..


Anonymous said...

This is by far the hardest thing god has thrown at our family yet.It is awesome we are all coming together as we should be.It just really really sucks that it took our bella leaving us to make it happen.I am by far the last person to be preaching but you are right when you say it is gods will and we will all reunite.I dont know how how i will handle Friday, but given the circumstance, it is all for her.As long as we are all there and can show our love for the lil angel Bella. I miss her more then anything in the world. I wish I was around her more then I was. I guess I am trying to heal myself by being around C as much as possible.I just hope we can all stay as close as we are and let Ella know she DID make a difference in this world. And will continue to do so everyday in aking us stronger until the real reunion comes. love always, tom

dg darling said...

Just wanted to let you know I still pray for your family often...

Tiffany Lockette said...

I feel the pain you feel through your words you type and my heart aches for you. I wish there was some way I could bring your sweet Bella back to you. I can offer you my prayers and let you know you aren't alone in this mad world. Bella is watching over you and awaiting the beautiful day that you and her meet again. My prayers are with you.

Stephanie said...

Praying for all of you Jen!

Tiffany Lockette said...

I'm so sorry, I meant Ella. I called her Bella.

Anonymous said...

If tears could build a stairway, and memories a lane. I'd walk right up to Heaven and bring you home again.

We should have a 4lane highway by now. You all are in my thoughts and prayers as always, but especially tomorrow. Love Aunt Shelley

Cristy said...

I don't know you...I came from Jess's blog after reading your comment. I am so sorry for your loss. Baby Ella is so beautiful! Keep the faith and trust that God is with you each day.



Karina said...

Another stranger from the Macs' blog, just wanting to offer you a virtual hug and let you know I read Ella's story and cried. I don't know how any mother can support such a loss, and I admire you for getting up every morning. Ella is beautiful.

run26.2mom said...

I also found your blog through your comment on the Macclenahan's blog. Ella is as beautiful as her name! I will pray for peace in your heart and family today. If you want you could check out Kelly'skornerblog.com then on the right hand side find the blog entitled Dad. Kelly's dad has written some articles on why bad things happen to good people. Very interesting. Maybe it will help a little today.

Anonymous said...

I was directed to your sight by a friend. I was very touched by your story and feel I can strongly relate.
Five years ago two of my brothers were sentenced to prison for a very long time because someone made an accusation. Although there was no evidence to convict them the jury said there was no room for fundamentalists in Austin because it was a liberal city and they wanted to keep it that way. The twins were both newly married and were truly two godly young men who definitely do not deserve to be in prison. Two years following their imprisonment my sister's newborn baby died, which truly broke our hearts. Then, this past January, my Dad died of kidney failure. He was only 57 years old and had spent his entire life serving others. I know that God has a plan through all of this, but I find myself daily struggling to accept it all. I so often ask God, "Why has all this happened? What have we done wrong?" Only to feel His kind and gentle voice telling me that He is in control and one day I will understand it all. There is more going on with the family of which I will not bore you, but my eleven year old neice will be going through another major heart surgery this November and once again we will all have to put Ashley in the Lord's hand. If only we could control the end of the story, but God's ways are not our ways and He knows what is ultimately best for our lives.
I will pray for you and your family as my heart grieves for you as I can understand the pain in losing someone so dear and so precious. May God comfort your hearts and give you such grace and peace in the midst of your heartache. 2 Corinthians 12:9 I would also like to strongly recommend a book to you written by one of my brothers in prison. It can be purchased through the Victory Baptist Press and is called The Embrace of Grace. We have given the book to so many going through great trials and repeatedly we are told that that book was such a blessing!
Tisa Damron

Holly said...

A friend of mine lost her little girl to Alpers not too long ago.


I'm so sorry you lost your precious Ella. It is so heartbreaking.

Franchesca Cox said...

I am sorry for your loss. It is mindnumbing how many of us babylost mamas there are out there. It is sad. I wanted to let you know that I can make a Hope Collage of your sweet Ella Bella's name. Just go to my blog Hope Collages and you can others who have requested it.


It is so hard and for me there are never enough ways to honor my Jenna Belle's life. I started doing this for babylost mamas which I hope brings some comfort and peace for a lifetime of words not spoken.

Your daughter is so beautiful, lots of love. xx

JenJen said...

I came over to your blog from Bree's blog and just wanted to tell you how beautiful your daughter Ella is and how so sorry I am for your loss.

I became a part of the baby loss community 14 months ago when my daughter, Lily, died. I'm always surprised at how many of us there are that endure this pain of losing a baby and for all the various health issues that I never knew existed until I read a new angel's story.


Mary said...

Ella is a beautiful little girl. With all the love that she was given, I know that she is very special.

Amber said...

I'm so sorry. I have tears rolling down my cheeks while reading and thinking about your baby girl and the pain that you and your family are in. This shouldn't happen, and I'm sorry.

Gary Tucker said...

I am so sorry to hear of your loss. Losing a child is the most terrifing, and horrible thing that any parent could ever go through. We lost our son Brody back in March, so i can understand how you feel... Please take my advice. Lean on your husband when you need too, and allow him to do the same. Your family, and your faith are the only things that can get you through this tragedy. Don't let either one go, they are your life lines... Your story is so simmular to ours. Except we have an older girl, and Brody was a boy. Other than that, I was astonished at how much in common we have... Believe me when I say, you will get to a point that pain does not consume you. I still think of my son every minute of everyday. But, I can do it with a smile most of the time now, instead of tears... We will be with our children again, keep the hope, and keep the faith. I promise, we''ll see them again.

Brody Tucker's father

margaret said...

I just read Ella's story and I wanted to comment on how beautiful she is and how much your love for her shines through in your words. I'm so sorry your perfect girl passed away, there really is no greater pain and it is so hard to keep faith in God when we're hurting so much. Sending you hugs

Carly Nicole Elliotte My Micro Preemie said...

This totally made me cry. I'm so sorry for your loss. I have lost 2 girls. I have no living children. My 1st daughter lived in the NICU for the 4 months of her life on earth before passing from a heart defect. Our 2nd daughter was stillborn 8 months at 32 weeks. My heart goes out to you and your family.


Kelli with Love said...

Ella's story breaks my heart. I have spent the past half hour crying for you, your husband, and your sweet daughter. And for Cayden. I bawled when I read what he said about sometimes missing her if sometimes is every day. I pray that you guys make the right decision for your family about your next child. I wish words or tears could bring your Ella back to you. No parent should ever have to go through what you have. I am so sorry for your loss. And so grateful that you got to spend eight months and twenty nine days with her. She is absolutely beautiful. May God heal your hearts of the loss and may He keep all your sweet memories with her fresh in your minds forever.

Kelli Duran

(I found your blog throgh Maryn's Hope when reading her comments. I hope you don't mind that I've peeked into your life. Please feel free to read my blog if you're interested. www.tylerandkelli.blogspot.com)

A Dragonfly's Embrace said...

Reading Ella's story ties my stomach into knots. My wife and I lost our little Olivia just before her 6 month birthday to Alagille Syndrome which affected her Heart, Liver and Kidneys. Losing her has just shattered our world, I've just now started to search out and trying to find others who know our pain. I'm glad yet saddened that there are other families that know exactly what we are going through. I've just started blogging about this to find some common friends at adragonflysembrace.blogspot.com



PS: Ella's pictures are just precious, man does that smile look infectious.

Mackenzie's Mommy said...

I found your blog and just wanted to say I am so terribly sorry for your loss. Ella is so gorgeous! I often wonder what is harder, getting to know your baby and losing them or losing your baby before getting to know them. Either way it's devastating beyond words. My first baby, Mackenzie, was stillborn at 41 weeks. Again, I'm so sorry. My heart breaks for you.

Megan said...

I'm just now reading your story and all you have been through. You are such a strong family. I'm so sorry you've had to feel the pain you have felt and continue to feel. :o(

Anonymous said...

I just found your blog and after reading about sweet baby Ella, tears are rolling down and my heart breaks knowing a piece of your pain. I also belong to this kind of sadness, my daughter died almost 10 months ago 4 months after my 54 yr. old mother died suddenly to an embolism. I know pain, I know despair. As I read about Ella all I could think of is, I am glad I know of her, I am privileged to know of her. Your sweet child...what a beauty...now she is part of perfection in Heaven, she is whole and perfect...along my Noa.

May some days be easier to love her without the pain being so heavy, I hope you have those days where you can smile remembering her and not only cry for having lost her, may some days be a break from the sadness and may the sky shine as blue as it did before, different, never whole, but I'm hoping for some goodness in your life.