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
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
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
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
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 :)
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
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
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.
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.
On Aug 29, 2011, at 8:58 PM, Emily
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