Strength Redefined

I don't think there is one true definition of strength. In fact, it's hard to describe what strength really is. I think it's hard to put in words just like love, instinct or resilience. I don't even think it's a choice. When you feel such ferocious love for your child, the kind that overpowers you, you can't help but feel strength. Day to day, it's easy to forget that my daughter has hydrocephalus. Yes it's physically obvious, but to me, I could stare at her all day and wonder how she could look so perfect. Right now, I enjoy every move she makes, not being surprised at what she does but still not taking for granted that she might not be able to do that. She moves her legs, and I am grateful that she can. She follows me with her eyes and I'm amazed that she can see. The dog barks and I'm so happy that she jumps. I enjoy the simplicity of each day with her and revel in the fact that she acts "normal." 

But the fear is there. The fear that one day, her development will be obviously delayed. That other kids will ask what is wrong with her. That she won't be able to make choices in this large world. That she'll cry in pain and there won't be a damn thing I can do about it. Or that someone won't believe in her. We look at her and think there's no way she will show brain damage because of how good she is doing now. But what if we're wrong? I think about the simple fact that her precious brain is so severely compressed against her skull and how cruel that is. It's not fair. It makes me angry, scared and desperate. To think I would give anything in this world to make it not so, but I just simply can't. My love is immeasurable yet I can't wish that fluid away. 

I've fully embraced this world. But how could I not? It's a family I never thought I would want to be in. I've struggled to find words to explain how it feels to know other hydro parents and just know they get it. I don't need to write this post for them to understand my feelings. That crushing blow when a doctor tells you there is something like this wrong with your child. We've felt it and remember it like it was yesterday.  Most of us have been offered termination and will forever remember that. We'll look at our children and wonder how that could ever have been an option. Not frequently but just enough to know it sets us apart from other parents. There's no other feeling than wondering about the quality of your child's life and knowing the only answer is "wait and see." The "wait and see." That is so hard. The hardest part of pregnancy. But when you learn to let it go, how freeing it is. Not knowing how things will go is the exact opposite of my personality. But I've learned how to do it somehow. I have no idea how. I'm sure there's many hydro parents that have the same personality and we have no choice but to "wait and see." I wouldn't change my daughter for anything. She's perfect to me. But how easy it would be to be naive and expect the same path of typical development. How easy to not have the heart-gripping fear that could sink you if you let it. I think struggles in life are necessary. However, I want my daughter's struggles to be trying hard in sports, not getting her way, learning how to deal with failure. Not waiting for the next shunt revision, feeling less capable than other kids, or basic motor activities. I know the hydro is not my fault, but it makes you feel like a failure as a parent. 

 

But these hydro babies and their parents. Wow, they are amazing.  How each milestone is so precious now. How we as parents, understand it and celebrate right along each other. How much it means to me that you see such beauty and strength in my daughter.  I wouldn't get that anywhere else.  I never thought I would feel so proud for stranger's babies. But I do. I'm happy alongside you and see such beauty and strength in your babies. And in you. It's like I know you. I still wonder how that's possible to feel so connected to others you don't know in person. The strength we have is unique and feels like a secret club that I didn't know existed. I wish I could explain it better. But I don't think I need to.

 

Neuro-ophthamology and MRI/Neurosurgery Appointments

We are elated about Emily’s appointments today!  She passed with flying colors at her neuro-ophthamology appointment – there appears to be no damage or atrophy to her optic nerves and her retinas are nice and flat like they are supposed to be!  She does have a slight end-gaze nystagmus, but that can be very normal in babies her age.  She still isn’t in the all-clear as far as vision; things can show up later, but so far, we are some happy parents!  She will be seen again in 6 months to make sure everything is still looking good.  

Emily was a champ during the MRI!  The technicians warned me that she would cry a lot during the whole thing but she was just fascinated by the sound and only cried at the very end – I think she was just tired of sitting still.  She showed them!  I got to lay down with her in the MRI tube – I wish I had a picture of how cute she was in there.  We both had earplugs and it was still loud.  Daddy had to stay outside the room and he even said it was loud. 

Dr. Fuchs, our neurosurgeon, was very happy about the results of the MRI.  He showed us 2 images and her brain has fluffed out some!  Wonderful, beautiful brain!  There is still a lot of fluid of course, but the shunt has to work slowly so it doesn’t overwhelm the brain.  Sometimes, the brain doesn’t fluff back out or it collapses on itself, which causes fluid to spread on the outside of the brain.  Dr. Fuchs said that’s a sign of the brain not being resilient to the pressure but we didn’t see any of that.  Of course, in my true fashion, I asked a bunch of questions, in particular if the corpus callosum was there.  It is, thank goodness!  However, it is very stretched and thin, so only time (and less fluid) will tell the true story behind it.  !  We also couldn’t get a good look at any other structures for now.  But we did see fluff and folds!  The brain is still at its most compressed in the back, the part responsible for vision.  Since she is tracking objects and clearly seeing us, the assumption is that it is not too damaged. Despite all my questions, Dr. Fuchs said the pressure is off the brain and it is fluffing back out , so that’s all that really matters.  Going from seeing a sliver of brain to what it is now, is beautiful to us!

I wish we had before pictures from her ultrasound to compare.  I'll work on getting those up soon. 
The grey part is beautiful brain and the white part is fluid.

Emily's brain - still a lot of fluid but this looks dramatically less than before.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Normal sized ventricles - the black parts in the middle are the ventricles

Emily's brain - the greyish part is her brain and the white is fluid

Normal brain - not the best comparison but I couldn't find an infant MRI picture of this angle