A lot of people have mentioned a desire to come visit us while we are at the hospital. We are there most evenings from about 6:30 to 8:30 and would love to visit with you. Please call us first, and make sure you and no one in your house is feeling sick.
See you soon :-)
Wednesday, October 10, 2007
Wednesday Update
Just wanted to let you all know that Ellie's G-tube surgery is scheduled for Tuesday, Oct 16.
They have taken her off of ventilator support and have her on CPAP. CPAP is basically positive pressure; it doesn't actually breathe for her. So this is a good step. We are still praying hard that she will be able to breathe through the trach without the CPAP support.
Her primary nurse is back working today after 2 days off. She told me that Ellie seems even more responsive now that she was 2 days ago! Praise God for progress!
Thank you everyone for your messages of support and prayers. We are doing well.
Monday, October 8, 2007
A Wonderful Sunday
I have learned that I get more responses if I post a picture of our beautiful daughter first, so here ya go:
We had a great day yesterday. We started off by visiting Ellie early in the morning before church. I was excited to see her dressed in a gorgeous brown kimono shirt that Grandma Vedra bought for her. She was resting peacefully, and it was nice to start the day visiting her.
It was great to be at church and worship our covenant God. We are just amazed at the warmth and fellowship we receive from our church family. They have made it clear that they are here to support us in whatever we need, whether it be with food, prayers, money, or electrical work on the house. We can not express how loved and encouraged we feel.
Adam expressed to me after returning from the evening service just how sustained he feels after spending time at church again. He just felt so uplifted, and like no matter what happens, God will provide.
After evening church, we headed off to visit Ellie again (thanks mom and dad!) We had such a good visit! She was opening her eyes a bit and moving around a lot. Our nurse was showing us a lot about trach care, and when she suctioned Ellie, we think we saw her cough!! I still can't believe it, which is why I say "think" even though the nurse was pretty sure it was a cough. I know I should not be surprised at God's miracles, but it is still unbelievable.
Thanksgiving:
Our awesome parents who have been helping us out in so many ways
Friends who bring meals and watch the boys
Successful tracheostomy surgery
The support of our church family and believers around the world
Prayer Requests for this week:
That Ellie would continue to amaze us in her little ways of progress
That Ellie would be able to breathe through her trach without a vent
The upcoming g-tube surgery
Thank you everyone for your prayers! They are working, and we can feel it.
We had a great day yesterday. We started off by visiting Ellie early in the morning before church. I was excited to see her dressed in a gorgeous brown kimono shirt that Grandma Vedra bought for her. She was resting peacefully, and it was nice to start the day visiting her.
It was great to be at church and worship our covenant God. We are just amazed at the warmth and fellowship we receive from our church family. They have made it clear that they are here to support us in whatever we need, whether it be with food, prayers, money, or electrical work on the house. We can not express how loved and encouraged we feel.
Adam expressed to me after returning from the evening service just how sustained he feels after spending time at church again. He just felt so uplifted, and like no matter what happens, God will provide.
After evening church, we headed off to visit Ellie again (thanks mom and dad!) We had such a good visit! She was opening her eyes a bit and moving around a lot. Our nurse was showing us a lot about trach care, and when she suctioned Ellie, we think we saw her cough!! I still can't believe it, which is why I say "think" even though the nurse was pretty sure it was a cough. I know I should not be surprised at God's miracles, but it is still unbelievable.
Thanksgiving:
Prayer Requests for this week:
Thank you everyone for your prayers! They are working, and we can feel it.
Saturday, October 6, 2007
Saturday Update
Eleanor is healing well from surgery and resting peacefully. She is starting to gain more weight again and is 7 lb 6 oz. They are talking about the nissen g-tube surgery taking place next week.
We all think she looks like Noah did as a baby. We just love to kiss those cheeks!
Thursday, October 4, 2007
Surgery was successful!
Eleanor went in for her tracheotomy at around 11:45 this morning. She was in there for about 45 minutes. The doctor tells us it went quite well.
We were able to see Ellie back in her bed at around 1 pm. She was resting peacefully, and we were able to see her entire face. She is now coming off the anesthesia and will be resting and healing. They will not try her off the vent for a few days we don't think.
Praise God for a successful surgery!
in her bed before surgery
recovering with her new trach
Ellie's beautiful face
We were able to see Ellie back in her bed at around 1 pm. She was resting peacefully, and we were able to see her entire face. She is now coming off the anesthesia and will be resting and healing. They will not try her off the vent for a few days we don't think.
Praise God for a successful surgery!
in her bed before surgery
recovering with her new trach
Ellie's beautiful face
Wednesday, October 3, 2007
Wednesday Update
The meeting today was pretty brutal.
Last week, we were told by the Ear/Nose/Throat doctor that he had not seen tracheomalasia as bad as Eleanor's in his 20 years of practice. When he stuck the scope down her throat, she did not even muster a cough or gag. He had never seen that lack of response. So, we had heard that bad news from him, but were hoping for something more encouraging from the Neurologist.
Unfortunately, she was not the bearer of good news either. She told us whatever Ellie has is very severe. If she has one of the genetic disorders that they are testing for, she would have the most severe case they had ever seen. If she does not have one of those disorders, her future does not look any brighter. Basically, the neurologist thinks that there is something wrong with Ellie's brainstem. They did not see anything structurally wrong in the MRI, but they are not able to see the little nuclei that travel down the brainstem. She thinks that is where something is wrong. Impulses are not getting places like they should.
The "good" news is that she thinks it is probably not one of the genetic disorders causing this. Ellie's chromosomes that they tested in her blood were okay as far as they could see. We also have no family history of genetic problems, and her case is missing some of those genetic markers. This does not mean it couldn't be a genetic thing, but the Neurologist is leaning more towards Ellie's issues being a result of some sort of episode that happened in the womb. It could have been a stroke that occured very early in the pregnancy before the brain was developed. It could also just be a "fluke" where her development took a wrong turn sometime in utero. Again, this is all just speculation at this point. It would not change Ellie's situation, but it would be good news as far as the future of our family: whether we could have more children, whether the boys would be affected, whether they could have children that were affected, etc.
The bad news is that Ellie's future is very, very bleak. She will probably not develop abilities beyond those she has right now. She will be very suseptable to pneumonia, and often kids like her are in and out of the hospital every six weeks with illness. Each time they recover, it takes a little of their strength with it. She might develop chronic lung disease, where the lungs build up scar tissue from so much illness. Ellie will also likely have trouble growing normally. In order for bones to develop correctly, they need to have gravity and weight put on them. She will likely lose bone density and be suseptable to multiple breaks and fractures. She might be uncomfortable with stiff joints and muscles.
Due to this picture of her future, the doctors gave us the option of letting our precious daughter pass on without all this suffering. It is hard to believe we are even in the position where that would be an option. The doctors tell us Ellie's situation is kind of a gray area, where they can see reasons we would want to let her go, and also reasons to pursue treatment. They told us about the different hospice options that are available in our situation. It is so sad to even imagine.
We are choosing to pursue life for Ellie. We know that God has a plan to bring himself glory through her, and that she is made in his image. We must praise God for this covenant child that he has given us--our job is now to love her and take care of her.
Our plan right now is to get Ellie home and enjoy her for as long as God gives us. The first step for this to happen is for Ellie to have a tracheotomy. The ENT doctor providentially was on the NICU floor when we told the doctors our decision, and he immediately came to our conference room to tell us that he might be able to do the surgery tomorrow morning! He is going to try to squeeze her in around noon tomorrow. Once Ellie's trach is healed, they will move on to the nissen G-tube surgery. This could be about a week after the tracheotomy. Once she is healed from both surgeries, we can start talking about coming home. If Ellie is able to have the tracheotomy and breathe on her own, the road to coming home is much shorter. If she has the trach but still needs to receive some breathing assistance (CPAP), then the road will be much longer. Our house would need to be prepared to provide that sort of support, and that could take 6-8 weeks after the surgery. So we are praying that she will be able to breathe on her own with the trach.
I cannot express the peace that Adam and I have following this meeting. It is irrational how peaceful we feel with our decision and with the future of our daughter. It truly "passes all understanding." When we got back to her bedside, Ellie immediately opened her eyes to see us, and her pupils even followed me and interacted with me for a little while. What a blessing! We feel so free now of all the questions of diagnosis and future, and just want to enjoy her and love her for who God made her to be.
Prayer Requests:
That the tracheotomy would be able to happen tomorrow morning. That it would go well and Ellie would tolerate surgery.
That Ellie would be able to breathe on her own with the trach. This will bring her home to us much more quickly, not to mention make her easier to hold, cuddle, kiss, etc.
That Adam and I continue to have peace with our decisions about Ellie's care and her future
For Ellie's future-that she would bring glory to God and be a blessing to everyone she meets. That we may enjoy her for however long God gives us.
Ellie opens her eyes for us
Ellie holds dad's hand
Last week, we were told by the Ear/Nose/Throat doctor that he had not seen tracheomalasia as bad as Eleanor's in his 20 years of practice. When he stuck the scope down her throat, she did not even muster a cough or gag. He had never seen that lack of response. So, we had heard that bad news from him, but were hoping for something more encouraging from the Neurologist.
Unfortunately, she was not the bearer of good news either. She told us whatever Ellie has is very severe. If she has one of the genetic disorders that they are testing for, she would have the most severe case they had ever seen. If she does not have one of those disorders, her future does not look any brighter. Basically, the neurologist thinks that there is something wrong with Ellie's brainstem. They did not see anything structurally wrong in the MRI, but they are not able to see the little nuclei that travel down the brainstem. She thinks that is where something is wrong. Impulses are not getting places like they should.
The "good" news is that she thinks it is probably not one of the genetic disorders causing this. Ellie's chromosomes that they tested in her blood were okay as far as they could see. We also have no family history of genetic problems, and her case is missing some of those genetic markers. This does not mean it couldn't be a genetic thing, but the Neurologist is leaning more towards Ellie's issues being a result of some sort of episode that happened in the womb. It could have been a stroke that occured very early in the pregnancy before the brain was developed. It could also just be a "fluke" where her development took a wrong turn sometime in utero. Again, this is all just speculation at this point. It would not change Ellie's situation, but it would be good news as far as the future of our family: whether we could have more children, whether the boys would be affected, whether they could have children that were affected, etc.
The bad news is that Ellie's future is very, very bleak. She will probably not develop abilities beyond those she has right now. She will be very suseptable to pneumonia, and often kids like her are in and out of the hospital every six weeks with illness. Each time they recover, it takes a little of their strength with it. She might develop chronic lung disease, where the lungs build up scar tissue from so much illness. Ellie will also likely have trouble growing normally. In order for bones to develop correctly, they need to have gravity and weight put on them. She will likely lose bone density and be suseptable to multiple breaks and fractures. She might be uncomfortable with stiff joints and muscles.
Due to this picture of her future, the doctors gave us the option of letting our precious daughter pass on without all this suffering. It is hard to believe we are even in the position where that would be an option. The doctors tell us Ellie's situation is kind of a gray area, where they can see reasons we would want to let her go, and also reasons to pursue treatment. They told us about the different hospice options that are available in our situation. It is so sad to even imagine.
We are choosing to pursue life for Ellie. We know that God has a plan to bring himself glory through her, and that she is made in his image. We must praise God for this covenant child that he has given us--our job is now to love her and take care of her.
Our plan right now is to get Ellie home and enjoy her for as long as God gives us. The first step for this to happen is for Ellie to have a tracheotomy. The ENT doctor providentially was on the NICU floor when we told the doctors our decision, and he immediately came to our conference room to tell us that he might be able to do the surgery tomorrow morning! He is going to try to squeeze her in around noon tomorrow. Once Ellie's trach is healed, they will move on to the nissen G-tube surgery. This could be about a week after the tracheotomy. Once she is healed from both surgeries, we can start talking about coming home. If Ellie is able to have the tracheotomy and breathe on her own, the road to coming home is much shorter. If she has the trach but still needs to receive some breathing assistance (CPAP), then the road will be much longer. Our house would need to be prepared to provide that sort of support, and that could take 6-8 weeks after the surgery. So we are praying that she will be able to breathe on her own with the trach.
I cannot express the peace that Adam and I have following this meeting. It is irrational how peaceful we feel with our decision and with the future of our daughter. It truly "passes all understanding." When we got back to her bedside, Ellie immediately opened her eyes to see us, and her pupils even followed me and interacted with me for a little while. What a blessing! We feel so free now of all the questions of diagnosis and future, and just want to enjoy her and love her for who God made her to be.
Prayer Requests:
Ellie opens her eyes for us
Ellie holds dad's hand
Tuesday, October 2, 2007
Tuesday Update
There are no changes with Eleanor today.
We have set up a meeting with the Neurologist and our NICU doctor for tomorrow at 1:30 pm. There is a chance they will have some test results by then. My prayer is that all the tests will come back negative. I would rather Ellie be undiagnosed than she have the diseases they are testing her for at this point. None of them are good, and I would rather we have the question of not knowing her potential than to have the bleak future that comes with these diseases.
Our plan is to tell them to go ahead with setting up the trach surgery at the meeting tomorrow. We must move forward even though the surgeries sound scary.
peace and love--
Emily
We have set up a meeting with the Neurologist and our NICU doctor for tomorrow at 1:30 pm. There is a chance they will have some test results by then. My prayer is that all the tests will come back negative. I would rather Ellie be undiagnosed than she have the diseases they are testing her for at this point. None of them are good, and I would rather we have the question of not knowing her potential than to have the bleak future that comes with these diseases.
Our plan is to tell them to go ahead with setting up the trach surgery at the meeting tomorrow. We must move forward even though the surgeries sound scary.
peace and love--
Emily
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