Hi Everyone,
Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.
When Ellie was born they told us she may not make it through the next few hours, then the night, then the week. After she survived for two months they told us that we should sign a DNR because she had diffuse PVL and that she would be severely impaired. Horrifying to be sure that they would suggest doing a DNR on a kid who needed suctioning so she would not drown on her own secretions. After that we were afraid to leave the NICU at all in fear that they wouldn't work hard enough to save her.
However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day. That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent.
During Ellie's infancy and toddlerhood I was also afraid of what our future would be. What if Ellie were severely impaired? What would that look like? Would I be able to handle it?
These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help.
However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are. But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different pace than other twelve year olds? Yes - totally. And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face. However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever.
Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.
That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet.
The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed.
The consequences of not doing this is that she won't be able to stand much so that her organs will get scrunched which is life threatening. And her hips will start to come out of their sockets regularly - which is hugely painful.
Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on. And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect.
With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do.
There is that expression: Have faith in God but tie up your camel.
It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.
Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.
 |
| Ellie having a foot soak. |
However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day. That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent.
During Ellie's infancy and toddlerhood I was also afraid of what our future would be. What if Ellie were severely impaired? What would that look like? Would I be able to handle it?
These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help.
However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are. But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different pace than other twelve year olds? Yes - totally. And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face. However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever.
Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.
That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet.
The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed.
 |
| Ellie Belly checking out the fish at age 4 |
Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on. And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect.
With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do.
There is that expression: Have faith in God but tie up your camel.
It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.
