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