Corinne Sophia was born on July 12th, 2011 at 1:27pm into the loving arms of her parents Emily and Ryan Moll at Mercy in Rogers, AR. Corinne immediately had medical complications and was helicoptered by the Angel One team to Arkansas Children’s Hospital in Little Rock. After several days of medical testing and amazing medical care Corinne was diagnosed with Zellweger’s Syndrome, a rare metabolic genetic disorder that affects normal brain development and leads to respiratory distress and in Corinne’s case heart failure. Corinne was back transported, again by the Angel One helicopter team, to Washington Regional Hospital in Fayetteville, AR so she could be loved by all of her friends, family, and big brother Evan. Corinne passed on August 10, 2011 at 9:16pm in the arms of her Parents.

Thank you for reading our blog.
Best way to read Corinne's story from the beginning is to go to the left and drop down July and start with "Weekend before Corinne's arrival"

Thursday, August 18, 2011

Car Stickers in Corinne's Memory

We are getting car stickers made in memory of Corinne. We would love anyone who wants one to display it on your car. Please no there is no hurt feelings if you don't want one but we want to offer it to everyone. The stickers are made for windows and will come off without leaving anything behind (they said maybe a sticky residue that would go away after a few washes or instantly with some rubbing alcohol)
We are making them in white, purple, and orange. If you are interested please let me know. We are hoping to go to the printer soon. Also let me knowing if you have a color preference. Right now we just plan to get equal amounts but will get more of one if it's a favorite.
Thanks and questions let me know
Below are contacts to let me know if you would like one

text--- 479-685-3120
facebook--- Emily Wegner-Moll

Wednesday, August 17, 2011

Corinne's Funeral Service Pictures and DVD's

Fellowship Bible Church made a wonderful slideshow for Corinne's funeral service. This one played before the service started. Most of the pictures are of friends and family that visited her while at Washington Regional

This is the second part of the video that played during the service.

Our wonderful friend Emily Allen photgraphed Corinne's service. The pictures are amazing Emily!! Thank you!!!!!!
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Tuesday, August 16, 2011

Emails to Corinne's friends and family

Below are all the emails that were sent to our friends and family to update them on Corinne. Most recent are emails we sent after she passed.

As most of u know we welcomed Corinne Sophia Moll into the world on Tues July 12th. We immediately experienced health issues w her and she was sent to the NICU @ Mercy in Rogers. Not even 12hrs after her birth she was being air vaced to Childrens in Little Rock AR.
Through the amazing support of our local friends Ryan left for LR that nite and I left out the next morning.
She has been @ childrens for almost 36hrs now and we are still undergoing a lot of tests and waiting for a lot of answers.
We want to thank everyone for their prayers, thoughts, and encouraging words!!
The only definitive thing we do know right now is that she has a hole in her lower heart chamber ( vsd) and a pda , which is blood vessel that bipasses the lungs when baby is inutero that shld close on its own and it has not.

Ryans parents are with Evan right now. And he is being well cared for and loved.
My sisters and mother are here with us @ Childrens ( as many of u know my sister and her husband are doctors and my other sister is a physicians assistant both w numerous medical resources) My sisters have been our life line with the doctors to help Ryan and I (but mostly me.. Because my brain is mush right now :) process everything.
Again I want to thank everyone for prayers and encouraging messages!!! Please please continue the prayers!!! Right now our time to communicate outside of immediate family and family friends is limited.
Thank u we love u all please pray for Corinne we have a long road ahead of us.!!
Emily and Ryan

Please forward this on to our friends. I know I have missed several people but I haven't been able to keep up w everyones emails as they have sent it in

July 16th
I want to thank everyone again for all of your emails and prayers. I can't express how much it means to us. I know everyone is trying to understand the realm of what is going on. Every day has been a step forward and some back. Today was not as good as yesterday. We got some MRI results back that showed some abnormalities. Genetically we have ruled out disorders like down syndrome and two other disorders that have very short life expectancy, but we have a long road of tests (literally hundreds) and time to really understand what we are dealing with. The heart issues that we found a few days ago have gotten worse and again only time will tell. We have found many positive things like functioning kidneys, intestines, bone structure, her heart is working on its own, she is breathing on her own, responding to sound and touch. Right now we are praying for miracles. Things are changing every day but this looks like something that will take weeks/months to understand and a life time of medical attention.
Again we are praying for miracles, but she is our blessing and we are so happy to have her in our lives already. I know God only gives us as much as we can handle and we look forward to every day we have with her.

I want to thank all of our amazing friends and family that have altered their lives to be here and support us, you are Corinne's little angels!

Please keep the emails and texts coming!

Love Emily, Ryan, Evan and Corinne

July 22nd
The support that we have recieved the last week has made Ryan and I so greatful for all of the friendships and family we have supporting us. The last few days has brought some new information to us..we are waiting on one more test to complete the diagnosis but specialists are agreeing that Corinne has a rare genetic disorder and due to the large hole in her heart the time we have with her will more then likely be short. We will be meeting with the "team" of doctors inthe next few days/weeks to understand all of our options and will more then likely start working with a palliative doctor ( similar to hospice) in the next few weeks to focus on whats best for Corinne. Ryan and I are doing the best we know how to and honestly a lot of that has been because of the amazing out reach from all of you. We love Corinne and want to celebrate every day we have with her. We pray that we can offerer her the best quality of life and that we get as much time to know her and give her love
Evan is with ryans parents and we are working towards options to get him in little rock w us

July 27th
We meet with the Geneticist last night and he confirmed that Corinne has Zellweger's Syndrome. This genetic disorder is extremely rare and has an average life expectancy of 6 months but with the large hole in her heart her time with us could be much shorter. Corinne is not strong enough to have open heart surgery to repair her heart and as parents we are not sure if that's even something we want to put her through as its very evasive and healing time could be weeks/months and when we have so little time with her we don't want her to be in pain. Zellweger's is not curable or treatable all we can do is offer her supportive care. The team of doctors and NICU nurses have been amazing and we feel absolutely confident in their ability. We will continue to work with them in the next few days/weeks to understand what all of our options are.

Currently Corinne is stable. She is not breathing on her own but with a ventilator and has a feeding tube which she receives formula from. Her heart is failing her and every day cardio is examining her and adjusting her treatments. When Corinne was ventilated it was bitter sweet for us, she needed something to breath for her but the possibility that she could never breath again on her own scared us. Corinne also receives daily medicines to prevent/treat her seizures. We aren't really able to hold her, but I do change her diaper, give her bathes, take her temperature, wrap her in her blankets, and of course rub and kiss on her for hours at a time.

We are getting a furnished apartment here in Little Rock and will be moving Evan down here with us in the next few days. Ryan will start commuting between NWA and LR every week so he can return to work. We are working with a sitter service to be with Evan while I am at the hospital with Corinne. We are really missing Evan and we look forward to having him in LR!

We pray that we could get enough time with Corinne to get her stable enough that she could get the proper care she needed at a NICU in NWA area. Babies are amazing in so many ways awe just pray that Corinne's life is filled with as many happy loving memories as possible.

We want everyone to know that we have received all of your emails, texts, messages, cards, and care packages and thank you!!!! Thank you for also understanding that its hard for us to reply to them for so many reasons. But seriously everyone of them touches us and many have been read and reread.

I know all of you are wondering how Ryan and I are doing. Considering everything we are hanging in there. We definitely have our moments and days, but our support for each other is more then I knew possible. God is amazing and he has prepared us for this moment in our lives and we look forward to all of the blessings that are to come

July 28th
How so much can change in a day....
So we met with team of doctors this morning. As Corinne is not strong enough for a heart surgery and there is nothing they can do for her Zellwegers but make her comfortable. She is being back transported to Fayetteville Washington Regional in the morning!!!! We are so excited to get her "home" and be back around friends and family where we can spend quality time with her and give her soooo much love!!!. As her time on this earth is limited. We know it is bitter sweet and we are trying to focus on the sweet right now :)
Corinne will be flying back tomorrow morning leaving Little Rock around 8am and its about a 45min flight.
There is a neonatalogist (pediatrician who specializes in newborns in critical care) @ Washington Regional that just transferred from Childrens and she knows all about Corinne and her case. There is also a satellite Childrens office in Lowell, that has specialists wrking there wkly that can meet with Corinne as needed.
Ryan and I are driving home tonight so we can see Evan in the morning before we go to Washington Regional to meet Corinne after her second helicopter ride :) We miss Ev so much and can't wait to have our family all together :)

July 30th
Corinne had a safe flight to NWA friday morning. Our new doctor is great. The level of care is not the same as Children's but Ryan put it perfectly its not about treatments and diagnosis now but about giving her love and care.
We would love for everyone to meet her in time. Right now she is in a form of isolation ( protocol when you transfer hospitals to make sure you arent carrying any infection). Also to be quite honest I am having a hard time with the transition back and need some time to parent Evan and Corinne and figure out how to do it all.
Also I don't think we have maybe described the level of critical care Corinne is in and honestly I don't even know how to begin to do that.... I know lots of you have googled ( we we did the same :) but Zellweger's is so rare the information out there is limiting and some times not accurate.
Her life is very fragile right now and could stay that way, so many things could make her worse or shorten her time with us. We will learn more and more every day as we meet with doctors and watch her vitals.
In the back of our minds we are hoping she will have a stable next few days/week and then we could send out some time people could come and visit. It is all just day by day and its hard to predict.
Again thank you for all the emails/texts of care, concern, and prayer. Please keep them coming I need them more then I can explain

August 1st
We met with Corinne's doctor this morning.... I don't know how to write this next part... we have about 5-10 days left with Corinne.
We would love for everyone to meet her.
We have a time set up this Wednesday from 3pm-8pm for friends to come and spend some time with her in a more private section of the NICU. Ryan and I are holding it together relatively well, so please know we want that time to be happy and everyone comfortable.
Please come healthy and dressed in Corinnes colors! Violet and /or Orange ( if you don't have violet a dark pink or purple would be okay too:)

Corinne is at Washiongton Regional in Fayetteville. You will go right when you enter and follow the nursery signs, ring a doorbell, they will let you in, go to the desk and tell them you are there to see Corinne Moll.

Please forward this email on to anyone we may of left off or an email we may of gotten incorrect. As this is last minute and we would be sad if anyone didn't get this in time.

Please let me know if wednesday does not work for you, we may set up another day and of course we can work on separate times to see her as well

Aug 9th
As most of you all know we are back in NWA with Corinne at Washington Regional NICU. We have been cared for so well by the doctors and nurses! They are all so in love with our sweet baby girl. Last week Corinne had some good moments and some tough ones. Her seizures increased to 10-20 a day but she became more alert and had more movement in her arms,legs, and neck. The doctors felt like if Corinne was going to be able to breath on her own, with out a ventilator, now was the best chance she would have...They couldn't predict if we would have 30mins with her or 48hrs....
Well we are now going on 32hrs and she is doing great!
They moved us to a private room yesterday and we have a full time nurse to assist us with her. She still receives oxygen through her nose and has a feeding tube in her mouth. As we have learned through the doctors you cannot predict how long a baby with Zellwegers can thrive. Corinne's brain may not tell her to breath, her heart may fail her, or she may start to have other organ failure due to the Zellwegers. But what we do know is she is a fighter and is enjoying her cuddle time with her parents. She has been so peaceful since she has gotten off the vent. We are able to hold her now, really hold her!! We have had a few family members come up and spend time with her, but we keep our visits short and sweet. There is always worries of infection and over stimulating her.The doctors hope she will keep up the fight for life for the next few days, but as they always say..."you can never predict" so we are enjoying all of our precious moments with her.
We want to thank everyone for all of your prayers! Thank you to all of our friends who have delivered food and mowed our grass ( Elizabeth and Josh you guys are the best!) And a big special thanks to Jamie for putting together the community page for people to see what we need help with.
Right now Evan is camping with Ryan's parents. My sisters are here and staying at our house the next few days. As of right now all of our needs are met! The biggest one is holding our amazing daughter!!
Love you all!
Emily, Ryan, Evan, and Corinne

August 10, 2011

Corinne passed away late this evening in Emily and Ryan's arms. They would like her funeral to be Saturday, but tomorrow we will make definite plans. Emily and Ryan will send out more details tomorrow as we know them. Thank you all for your tremendous support.

Em's Sister,


August 11, 2011

All of you touched Corinne's life and your support has been extraordinary.

Emily and Ryan would like you to join them for Corinne's funeral and burial on Saturday, August 13th. The funeral service will be at 11:30 am at Fellowship Bible Church in the Family Room (located across the lobby from the main sanctuary).

Fellowship Bible Church of Northwest Arkansas
1051 Pleasant Grove Road
Rogers, AR 72758

Following the service, please join us for the processional to Fairview Memorial Gardens Cemetery in Fayetteville.

It would mean a lot to them if you could pass this e-mail on to any family, friends, co-workers, nurses, doctors, etc- anyone that you know of who would like to be there or have this information.

Please remember Corinne by wearing something that incorporates her colors, violet (purple) and orange.

In lieu of flowers, donations can be made to Arkansas Children's Hospital or Washington Regional Foundation in Corinne's name at the following addresses:

Arkansas Children Hospital
In Memory of Corinne Sophia Moll
PO Box 2222
Little Rock, AR 72203

Washington Regional Foundation
In Memory of Corinne Sophia Moll
P. O. Box 356
Fayetteville, AR 72702

Feel free to e-mail me or call me with any questions.

Em's Sister,


On Aug 29, 2011, at 8:58 PM, Emily wrote:

Its been a long time since I have emailed "everyone"... It was on my mind to do so tonight so here I am.

Again you all are amazing!!!! I can't imagen experiencing Corinne's life without all of you. Thank you so much for letting me share her with you. We love her and miss her so much!

Again thank you all for your emails, letters, cards, packages, texts, voicemail, etc..they amaze me and lift me everyday.

Every mother struggles with their child's death in so many ways, mine right now is NEVER forgetting her. So thank you for thinking of her!

Also for those of you who we have not seen us since Corinne's life or death do know that we love to talk about her and nothing you can ever say about her would make it not worth hearing people remember her.

On the lighter note.. Ryan, Evan, and I are doing good, Ryan has returned to work. He obviously has had tough days/moments and in some ways I am sure its better for him to be back.
Evan and I miss him but are getting back into our routine :)

As most of you know I have started a blog for Corinne. I recently found a way to make each post reflect the accurate day of events. So if you are followers the most recent posts will be in July. Thank you to all of those that read it!!!!!!!

As always please pass this email on to anyone I may of left off.

Love you all!
Emily, Ryan, Evan, and Corinne

Sunday, August 14, 2011

Google Search

Googled "Corinne Sophia Moll" tonite... forgot about obituary postings...

Wasn't really sure what I would get back when I googled her, I was hoping I would get her blog, again I forgot about the obit ads.... :(...
you have to google evan and corinne to get their blog..

thanks for reading corinne's blog... sorry for the randomness.

below is a post ryan's coworkers girlfriend did about corinne. its amazing the support and love we have had, I have never even met this person (Tess) and she wrote about Corinne, so amazing!! Thank you Tess!!

Thursday, August 11, 2011

Service Information

All of you touched Corinne's life and your support has been extraordinary.

Emily and Ryan would like you to join them for Corinne's funeral and burial on Saturday, August 13th. The funeral service will be at 11:30 am at Fellowship Bible Church in the Family Room (located across the lobby from the main sanctuary).

Fellowship Bible Church of Northwest Arkansas
1051 Pleasant Grove Road
Rogers, AR 72758

Following the service, please join us for the processional to Fairview Memorial Gardens Cemetery in Fayetteville.

It would mean a lot to them if you could pass this e-mail on to any family, friends, co-workers, nurses, doctors, etc- anyone that you know of who would like to be there or have this information.

Please remember Corinne by wearing something that incorporates her colors, violet (purple) and orange.

In lieu of flowers, donations can be made to Arkansas Children's Hospital or Washington Regional Foundation in Corinne's name at the following addresses:

Arkansas Children HospitalIn Memory of Corinne Sophia Moll
PO Box 2222Little Rock, AR 72203

Washington Regional Foundation
In Memory of Corinne Sophia Moll
P. O. Box 356
Fayetteville, AR 72702

Feel free to e-mail me or call me with any questions.

Em's Sister,

Follow her blog at

Wednesday, August 10, 2011

Day 30- Corinne's last day on Earth

August 10, 2011 Wednesday
I have set myself up several times to sit down and write about this day, for some reason I was never able to. It’s now November and I am able to write about Corinne’s last day on earth. I think about why it’s taken me this long, it’s not because I can’t talk about it, I love talking about Corinne. I realize now I have only told one person about Corinne’s last few hours and that’s only because she was the only person that asked and that I thought could “handle it”. I’m not upset that more people didn’t ask about her dying, I mean how do you ask someone about that??...

Still I contemplate what I should write… I don’t want to startle people or make them feel uncomfortable with what happened or maybe I am afraid I will be judged for being so matter of fact about Corinne’s death. I want to tell every little detail so I never forget it (then I ask myself.. how could you forget your child dying in your arms) but then again I hesitate because can people handle it…..I feel so dramatic when I say things like “your child dying in your arms” or “Corinne’s last day on earth” but that is what it was! Can you really sugar coat that??...

As I have told many people Corinne’s death was not like what you see on TV. There was no final breath, one fatal blow, etc. It was a slow horrific process where I watched my daughter gasp for breath for hours, I left my hand on her chest waiting for the last heartbeat, I rocked her praying that God would just take her and end her suffering. We stared at her for hours thinking this would be the last minute we would see our child alive and then she would gasp for another breath and her heart would beat again.

Corinne took her first of her last breaths at 4:15pm on Wednesday in the arms of one of my best friends Ronda and took her last breath at 9:16pm in my arms.

That morning we were prepared for another day with Corinne; we were going to have some of our closest friends come up and hold Corinne for the first time and my sister Rachel, her husband and two kids were arriving from California. We were planning for another day with her like we had the day before. I went home and showered and brought back a sleeping wedge my in-laws had gotten me for Corinne to lay in. I had held her the two nights before and had barely slept and I knew I needed to have a better sleep option for us that night. The doctor had told us the day before we needed to start thinking about what our plan would be if Corinne lived for a few more days or week (not saying that Corinne would have to leave the hospital but like a sanity plan for Ryan and I, I think he was concerned we would just sit in the hospital for 2 weeks holding her, which I am sure we would of)

That day I felt like I was obsessing over things that didn’t matter when I would look back on that day and what was really important…. Saving pictures from our camera to the computer, listening/downloading music that “meant” something to us, writing in Corinne’s journal, replying to emails/texts, scheduling visits with our friends…

It wasn’t until 4pm that day that we realized it would probably be our last day with Corinne. My friend Ronda and her daughter Kennedy would be the first visitors outside of our family to hold Corinne, and the last. When Ronda was holding Corinne she stopped breathing for the first time. I didn’t even realize it ( “it” being the first time Corinne stopped breathing). One of our favorite nurses (who was not assigned to Corinne that day) had stopped in to see how we were doing. Ronda was giving her the eye that something wasn’t right. Rene instantly stepped in and started to pat Corinne’s back to get her to take a breath. That was the one of the hardest things for us with Corinne’s death was the uncertainty. After Corinne’s first episode of not breathing her doctor came in and examined her. I am a factual person I needed to know exactly what to expect!! Exactly how much time I had with her!! But Corinne’s death was not like that, babies with Zellweger’s don’t have a certain fate. I had a really hard time with that. My sister and her husband who both deal with death on a weekly even daily basis couldn’t give me exact details. Sarah tried to explain to me that a lot of what dying people go thru is a reflex it isn’t them making the conscious effort to take a breath.

Ryan had plans to go eat dinner with Evan, my sister Rachel and her family would be arriving around 6, I emailed a few other friends about coming and visiting around 7. Ryan didn’t even make it to see Evan and Sarah was calling him back to tell him that things weren’t good, I was emailing my friends back telling them that visiting wasn’t a good idea, Rachel and Matt made it in time to hold Corinne for a few minutes. From 7-9pm Ryan and I just held and rocked Corinne. My sisters would come in from the waiting room every once in a while when I would text them with a desperate text message saying “ is this really what death is like” or “is there anything I can do for her”.

Again I hesitate about writing about Corinne’s last few hours. I don’t know why. I think mostly it’s because I don’t know the words….

Corinne passed away at 9:16pm on Wednesday August 10th, 2011 in the arms of her mother with her father by our side. We were listening to music, the play list being what is on our blog, her final song being “Shine” by David Grey.

Tuesday, August 9, 2011

Day 29- Family Holds Corinne

My Rinny Girls!

Grandpa, Grandma, Great Aunt Harriet, and Corinne

Grandpa Bob, Grandma Cheryl, and Corinne

High Five little sis

Moll Family

Me and my kiddos!

Evan, Grandma Vera, and Corinne

Grandma Vera, Elise, and Corinne

Grandpa Mike and Corinne

Grandpa Mike, Aunt Sarah, Cousin Elise, and Corinne

First time Aunt Sarah got to hold Corinne!

August 9th- Tuesday
It had been 24 hours since Corinne’s ventilator was taken out, her life support, and she was doing well. The doctor came Tuesday morning and I think in some ways he was shocked on how good she was doing. Up to this point we had no machines hooked up to her telling us her heart rate, oxygen levels, respiratory rate, and we weren’t taking any blood to check her ph and O2 levels. The doctor thought it would be good to run some blood work and hook her back up to her pulse ox to see some of her stats. We agreed, but it made her less wireless. We were still able to hold her (that’s all we did was hold her!) but we were constantly positioning all of her wires.

My sister Sarah arrived that day with her daughter Elise. We had family come up that day to see and hold Corinne for the first time since her ventilator was taken out. My dad, Sister Sarah, niece Elise, my mom, Ryan’s parents, and his Aunt all came to see, hold, and love Corinne that day. Evan also came up that day. We got our first family picture of all of us with me being able to hold Corinne. Evan at this point had become a little spoiled by all the family in town and attention he was getting so he wasn’t that interested in being with Corinne. That was hard for me. I really wanted to make “family” memories of the four of us. But I knew pushing Evan into it wouldn’t help the situation.

I left Corinne for 30 minutes to shower. I thought I was going to have an anxiety attack being away from her. It was the most inefficient shower I have ever taken 

At this point the nurses were just coming in every few hours to check on us. It was nice in many ways because I got to be Corinne’s full care giver! Nurses at Washington Regional weren’t as experienced with babies in Corinne’s health condition so they were always very hands on with her, at Children’s I got to do a lot of things by myself with Corinne. So I was happy that I got to change all of her diapers, manage her feedings, take her temp, obsessively count her heart rate and respiratory rate, and I even snuck in a bath.

That day was very hard for me. I had a lot of anxiety. Corinne was doing well but we knew it could be just a matter of hours until our world would drop out from under us. I tried to do “normal” things and lay there cuddling with her watching TV, listening to music, etc. I tried to soak up every moment with her but again I was breaking down inside.

Monday, August 8, 2011

Day 28- Could it be her last?

Mommy and little Rin

Corinne watching a storm come in

Dress up time!

Cuddle Time with Daddy

Nap Time

Mommy, Daddy, And Corinne!

Mommy and C cuddle time

So maybe I slept a little :)

Ryan holding his precious daughter!

Corinne's first time being swaddled without the wires in the way

Mommy and Corinne

Ryans first time holding Corinne somewhat "wireless"

August 8th Monday
As I start to write this I take a deep breath and the tears start rolling down my check. Monday was the big day; we would be taking Corinne’s ventilator out. We could have a few minutes with her or a few hours to days. The vibe in the room was we would have minutes. The doctor told us that if she was not breathing he would bag her so we could at least have a few minutes of holding her before she passed.
For an hour Ryan and I just cried, prayed, and loved on her. When we were ready to take the vent out I asked if I could take off all of her other wires and leads. The only thing they we would leave on her was a picc line so they could deliver her morphine in last moments and a nasal cannula that stuck in her nose to deliver her oxygen. They decided to take her feeding tube out as well as we really didn’t think she would live more than a few minutes.
The minute they took the vent out my beautiful daughter came to life!! It was amazing. She responded terrifically to it. Within an hour we realized that she was stable and sustaining so we dressed her and were given a private labor and delivery room with a window (we were in an amazing private NICU room before but it had not windows).
Over the next several hours Ryan and I took turns holding her, me getting the majority of the time. If I wasn’t holding her I had my hand on her chest always waiting for her last breath. We took about 200 pictures that day. I just laid and cuddled with her and kissed her perfect lips over and over again! It was one of the best days of my life! Since we didn’t know how much time we had with her we only wanted Ryan and me to spend the day with her. Our parents were out in the waiting room in case we needed them. My sister Sarah was on a plane arriving Tuesday and my sister Rachel and her family arriving Wednesday. Each hoping they would make it in time to hold Corinne!
That night I really didn’t sleep I just laid there holding her all night long. It’s a nite of sleep I would give up over and over again!

Friday, August 5, 2011

Day 25-27 Fashion Show

Perfect little feet!

Finishing up bath time!

Hat from CJ

Corinne's hat from Ronda

Hat number 2 from Ronda

Corinne's hat from Robin and Katie!

Our Family!

Ryan's friends Seth and Jordan from Alabama

August 5-7th Friday- Sunday
On Friday I wrote a letter to my sisters, Dad, and Mom letting them know what our wishes for Corinne’s funeral would be. I am a planner and I needed to know that if Ryan and I weren’t able to make decisions after Corinne passed that someone would know what we would want. It sucked! I felt like I was writing a business letter on an agenda for a weekly meeting. Obviously working in corporate America for 7 years my brain worked that way, but I felt..insensitive writing it.. Planning Corinne’s service was one of the hardest things I have done in my life. Here she was alive and I was driving around to cemeteries trying to find the best one instead of being with her. But I would have been so upset with myself if I would of just chose a random church, cemetery, flowers, music etc..
At this point we hadn’t exactly told people that we were making a decision to take Corinne’s ventilator out on Monday and that we could possibly just have hours with her. I am not really sure why we hadn’t told people. I wasn’t worried about being judged. I think at that point we felt very alone. We felt like people just didn’t understand the medical and emotional process we were going through.

Ryan had some friends and family come into town to meet Corinne that weekend.

I felt so alone and broken. I ached to hold Corinne but knew we could maybe just have minutes with her. I was worried we were making the wrong decision. Should we not take the ventilator out yet?? She had been so alert and responsive to me the last few days and her secretions weren’t as severe. But she was having 10-20 seizures a day. I then remembered something the doctor had said to me. He said that now was the best time to take out the vent because in many ways she was the healthiest she had ever been and she could be more successful breathing on her own.. and here I was thinking she had been the best she had been and I was taking that away from her by removing the vent. The doctors theory gave me peace.

Many of my friends had sent Corinne hats, so Sunday evening we tried them all on her and had a little fashion show! She looked so adorable!!!!

Tuesday, August 2, 2011

Day 22-24 Blessed by Family

The "Ballin's"-- Mike and Jamie

Staci and my Mandy "Lou"

Girl Time! Sarah Tucker and Corinne

My Katie Bugs and Robin

My family away from family - The Forbis's

Corinne's with Miller!!

Grandpa Mike and Mommy

Grandpa Mike and Pat

One of my best friends "Aunty Ronda"

Tuesday- Thursday August 2nd-4th
After our decision to take Corinne off of the vent in a week we emailed our family and told them the news, that we would only have 5-10 days with Corinne and if they were able to we would love for them to come and meet her.
We had so many friends in NWA that wanted to meet Corinne so we decided to set up a “visitation” of sorts on Wednesday and just have everyone come up at once and take turns coming back to see Corinne. Our doctor worked it out so Corinne could be moved into a private NICU room with one on one nursing care, this would make it more convenient for the hospital, other patients, and our friends and family that were coming to meet Corinne. We also had professional pictures scheduled for Thursday, by one of my favorite photographers, Mika Beth Edwards.
Up to this point Corinne usually “slept” most of the day and had very few active or awake moments and while we were at Children’s she had very few seizures. Once we got to Washington Regional she started waking up more, became alert for minutes at a time, moving multiple limbs at a time, reacting to light, sound, and touch....and started having multiple seizures a day and more fluid buildup in her lungs, so much so that Respiratory therapy was coming every 2 hours to suction her and do their DTP “ bopping” ( it’s a little paddle they tap over her chest to open up her lungs and dislodge some of the secretions she was having).
During the next few days it seemed like the more visitors we had, the more time we spent with her, the more stimulation she received, the more alert she became, and the more seizures she would have. I was so excited to have our friends come to visit her and a photographer come to take pictures but I was so worried that we would over stimulate her… I didn’t know what to do, so I stuck to the plan of having our friends come and it was definitely the right decision because so many people got to meet our amazing blessing!!
But that night I had another bubble burst….my daughter was dying and I had to plan a funeral!!! I am 30 years old; I don’t know where funeral homes are, cemeteries, how to plan a service. Wrapping my mind around that was SO difficult for me. Also at this point we had no family in town and we were offering full care to Evan, I didn’t know how to do it.. I know this sounds dramatic but honestly I didn’t know how to care for my living son, my dying daughter, my grieving husband; communicate with our helpful friends and our inquiring families. It was all too much!!!!!!!!!!! And again I broke down.
As always our family and my sister was there to help. The next morning my dad arrived at our house and his job was to get funeral information for me, Ryan’s parents said they would be here in 2 days to care for Evan whether it was for a week or a year, my sisters had their flights schedule to come in and help with everything. Again I was blessed and amazed by our family!

Monday, August 1, 2011

Day 21- Real Answers

Monday August 1
Monday 8am was our meeting with Corinne’s new neonatologist doctor at Washington Regional to discuss Corinne’s condition and what our options were. I was sick to my stomach… I felt that answers would be coming soon. I was ready to say what I thought! Which up to this point I never spoke to the doctors I just sat, listened, and wrote notes. (I Emily Brewer Wegner-Moll did not ask questions…that is rare if you know me!) But over the weekend it became very clear to me Corinne was dying and there was nothing a doctor could do, it was time for her Mother to care for her.
In our meeting Dr L. asked us to explain in our words what Corinne’s medical condition was. I told her that Corinne had a rare peroxisome disorder called Zellwegers, she had 2 holes in her heart that due to her health and medical condition she was not strong enough for a surgery, nor was one ever an option in our minds, Corinne’s brain did not form fully and coupled with that and her Zellwegers her body would start to shut down and she would not successfully breath on her own. I am assuming the doctor asked us this so she knew that we “got it”.
We then in turn asked what she thought Corinne’s life expectancy/quality would be and for the first time we didn’t get “you can never predict” we got a real answer, a real answer!!!!!!! We feel in love with Dr L because of this!!!......She explained Corinne did have a staff infection due to the ventilator tube that ran down her throat building up with bacteria. Because of the staff infection Corinne was having respiratory distress and more fluid was building up in her lungs. She said that we would put her on an antibiotic and we should see improvements in 2-4 days. Beyond that she said there was no more medical treatment to give Corinne. She told us that C being on a ventilator wasn’t a help to her, it would never help her breathe better on her own one day and that a longer a child is on a ventilator the more susceptible they become to an infection and phenomena.
I then I said it, the hardest thing I have EVER said.. We are ready to let Corinne go.
We all agreed that we would start Corinne on an antibiotic for a few days and then we would wean her from her ventilator for a few days. We asked Dr L how long she felt Corinne could successfully breathe on her own. She said based off of her medical conditions, brain deformities, and her history of successfully breathing on her own that she felt she would live for 30mins-48hours.
Ryan and I spoke privately for a little while and then I went and told Dr L that we were ready to take her ventilator out on Monday August 8th unless we saw significant medical change.