The prognosis right now doesn't look great, but we know that God will provide what we need for each day and guide us in making wise decisions for Ellie's care.
Adam and Emily
Sunday, September 30, 2007
Sunday Update
Not much has changed with Eleanor.
Breathing: Ellie is still on the ventilator to protect her airway. We will continue to talk to the doctors about doing a tracheostomy to give her a permanent airway. The doctors tell us that without the trach Ellie will likely never be able to breathe on her own. Her airway has no muscle tone to support her breathing.
Feeding: Ellie is still being fed through a tube that goes in her mouth and down to her small intestine. She is getting about 2 ounces every three hours. They will likely up her feeds based on weight gain. The nissen g-tube surgery will not happen until they perform the tracheostomy.
Test Results: We are still waiting on the tests to tell us the underlying cause of Ellie's condition. There is a chance we will never know what is causing it. A lot of the conditions they are testing for are quite bleak. Please pray for us as we accept whatever result God might give us.
The Future: We have met briefly with a social worker to talk about how we would care for Ellie if she comes home. Our lives will be very different, 24x7 medical care of Ellie, with in-home nursing, and lots of other changes. They anticipate that she will be in and out of the hospital fighting with pneumonia for the rest of her life.
The prognosis right now doesn't look great, but we know that God will provide what we need for each day and guide us in making wise decisions for Ellie's care.
Adam and Emily
The prognosis right now doesn't look great, but we know that God will provide what we need for each day and guide us in making wise decisions for Ellie's care.
Adam and Emily
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Every life has value, no matter how small. Who can say how many lives Eleanor will touch or what impact she will have in this world. I know seeing your faith and devotion to her has deepened my faith. I pray for strength in the upcomming days. You have all of my admiration and prayers.
ReplyDeleteOh Adam and Emily. You are in my heart.
ReplyDeleteDear Emily and Adam,
ReplyDeleteJust wanted to let you know that you and your family have been, and will continue to be in our thoughts and prayers. We will continue to pray for a miracle for baby Ellie and peace and wisdom for you and the drs.
In Christ,
Pastor Randy and Lisa Ledeboer
Emily and Adam,
ReplyDeleteWe are still praying for you everyday and thinking about you all the time.
We love you.
Mark and Laura Stob
Dear Emily & Adam,
ReplyDeleteI hope it helps you in some small way to know that my thoughts and prayers are with you and Ellie during this difficult time. May God hold each of you in His hands to give you comfort and strength as you go through each day.
Love, Connie
Adam and Emily,
ReplyDeleteWe are thinking about you all the time. We are keeping you all in our prayers & hope that Ellie has a miracle.
We Love You!
Love, Dena, Mark, Ryan and Tara Manz
Hello Vedra Family-
ReplyDeleteI came across this blog when a prayer request came up on another site for your beautiful daughter. We are praying for you all. So sorry you are going through this. My own son (who is 7 months old now) was in the NICU for his first Month and a half. We were told all sorts of very negative, unhopeful, things about his future. He has proved everyone wrong and continues to do so each day. Prayers helped! Hang in there. We've been in your shoes-it's so hard. Remember Ellie is less than one month old and no one can say for sure what the future holds for her.
We are praying for you all up here in Canada-
Hi Vedras,
ReplyDeleteWe've been praying for you all, and will continue to ask for Ellie's health and your strengthening. We are encouraged to read of your faith through this trial, especially in uncertainty and want to encourage you with a passage from Scripture where Christ is asked about a man born blind (John 9).
God is and will be glorified in the life of your daughter.
Thank you,
Emily and Adam...we will continue to pray for strength this week as it has been so long that you have had to travel back and forth to the hospital and the news from the doctors does not seem where we all would like it to be. HOWEVER, God has your family and the plans for your family already mapped out. Hold on to HIM and lean on HIM and others that are surrounding you with love and support and the desire to help. You are in our prayers daily for so many different things. I am confident that you feel all the prayers of so many that love you.
ReplyDeleteIn Christs love,
Melody Timmerman
Dear Adam & Emily - you continue to be in our daily prayers. We will pray for wisdom and peace in this week. Your faith is certainly uplifting to us all.You know a lot of people are praying for the strength you need for each day. Thank you for sharing your updates with us. Gord & Mary Walcott
ReplyDeleteAdam and Emily
ReplyDeleteWe are praying for you. We are friends with Nate and Lydia E. (Aaron was a groomsman in their wedding).
We are praying for you daily and praying that God will give you peace and strength during this time. Ellie is so beautiful.
Love
Lisa and Aaron Bishop
Adam and Em:
ReplyDeleteWe continue to think of you and pray for you and Ellie. We covet the reports and the messages from you and the Osterinks. God is good and will care for all of us.
Uncle Bob and Aunt Laura
We are thankful for your updates... Greg & I check it daily. I keep thinking of the hymn verse (can't think of the title) that talks about sharing our joys and pain and how often amongst each other, we share a sympathizing tear. It is true for you, that we have shared those tears of struggle for you as we read your blog.
ReplyDeleteWe continue to pray for strength for all of you, and great healing for Ellie
Adam and Emily, We are continuing to pray for your family and especially little Ellie. The trials that you are facing are great and we know you are resting in your Heavenly Fathers arms. We will be praying for continued strength in the days and weeks ahead.
ReplyDeleteA&E
ReplyDeleteGreetings. I was passed this site by friends ours (Jennifer who commented above) that my wife & I met in BC Children's Hospital (Vancouver, BC). Our son is 7 months old and have a g-tube and trach. I remember the trach being a very very possibility and my wife and I wanted to avoid it as much as possible. It is hard to believe, but we fully embrace the decision to receive the trach. Our son is much happier now than when he intubated for 10 weeks. This might give you some courage as your consider your options.
Our son (Josiah) has a rare syndrome (Pallister-Hall Syndrome), a sporadic genetic mutation that affects him head to toe. His airway was also floppy (malaysia - pardon my bad spelling) and his epiglottis was also bifid, short, and possibly without motor function.
If you'd like to bounce other questions off us, we are always willing to listen, especially to those who are in painful situations like ourselves (click the blog link I left below). Our son is still in the hospital (his syndrome has left him with respiratory, neurological, cardiological, and spinal troubles among others), and we have no time line for him to come home (if he comes home at all). Keep the faith, we're also believers.
Grace & Peace
For some reason the blog addy didn't work, so I'll just type it here:
ReplyDeleteandyman-sdg.blogspot.com
And I just re-read my post - brutal! I really should take more care in reviewing my typing!!
Thank you for the consistent updates. The pictures have really helped our kids to understand better what is going on and your blog helps us to make our prayers more specific. We will be praying for wisdom for you and the doctors.
ReplyDeletelove, Steve & Susan Vanderwey and family
Hi
ReplyDeleteI am so so sorry abut Ellie. I will pray for you and Ellie.
Emily and family,
ReplyDeleteThank you for keeping us posted on your precious little one. I have been following your comments since Ellie was born. Please know that you and your family are in my thoughts and prayers daily.
Adam and Emily,
ReplyDeleteYou are in our prayers and thoughts throughout the day. We can't imagine what you are going through, just know that many are praying with you. God is always with you and with your beautiful Ellie.
Dear Emily and Adam and family,
ReplyDeleteYou are so often in our prayers. Your blog has been read often. We have a big God that loves us so. Entrusting Ellie to His wise and tender care.
We live close to the hospital, so if you ever need to drop the boys off for an evening, just let us know. I read your updates daily, and pray for your strength every night.
ReplyDeletePs 27:5-6. For on the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock...
May you, in this time, experience God's protective care and, even through the tears, sing praises to God.
I am so thinking about you folks, even with all the garbage going on at work. I see you smiling in all the pictures, am filled with respect, and wonder how I would be looking (besides fat!)...
ReplyDeleteThank you for bearing this burden/challenge entrusted to you and your little darlings.
Love you guys.
ReplyDeleteDear Adam and Emily,
ReplyDeleteThe Moody verse of the week last week seems perfect for you: Is. 58:11 The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. I think it says it all! Look forward to HIS strength.
We love you, the TenHaaf's