LONG Post surgery update
As many of you follow my beloved bride, you may know that she has already posted an update about the surgery that we had for my darling daughter last week. I also, wanted to do the same, but life has a tendency to get hectic for me. However, let us get started, shall we?
Thursday my daughter finally had the distracters removed from her skull. For those of you that are new here, please allow me to recap. I am a cranio dad. This means that I have a child with craniosynostosis, a condition that effects 1/2000 children worldwide. Craniosynostosis is the premature closure of one or more of the gaps between the plates that make up the infants skull. It requires surgical intervention in order to provide room for the brain to grow and for a ‘normal’ head shape to form. Many children only need one or two surgeries in their lifetime to correct the issues that are caused by cranio. Thursday my darling 21 month old daughter underwent her sixth surgery. Granted, this may have only been her third cranio surgery… but I want you all to understand the truest and deepest scope of the hell that I find myself in sometimes. No parent wants to think about, or watch their child go under the knife; no parent wants to turn screws on either side of their child’s head to help create space, no parent wants to gauge out the space where a rectum should be on their child. But as a cranio parent, it is my calling to do these, and more, countless times. I do not see it as a cross to bear, nor have I let it become a chip on my shoulder. Instead, I have embraced this identity; I have let it call deep into my soul. I love my daughter with the fire of a thousand suns, and she has shown me that there is much more good in me that I once thought, and could have ever conceived. I am unwavering in the proudness that I exude that I, a very tortured, broken and tattered wreck of a man have been found so worthy to not only have my beautiful bride say “I Do”, but to have been selected by God to be the father of such an amazing child. For as much as I am to teach her, she has shown me, a thousand fold, how much light there is in this world.
But, as for the surgery, to get back on track I suppose. The distracters were devices that spread the bone, one click (0.03 mm) at a time. They were placed in my daughter’s skull in October in hopes to gain some positive space for her brain to be repositioned when they go in later this year and work on the front of her skull. The results have been amazing. The amount of change that we have seen has put some of the doctors at ease, and may be pushing back the next surgery a month or two.
Things were different in the prep room this time. Perhaps it was because my sweet 2 month old son was there, and ever present. Perhaps it was because we knew it would just be us in the torturous waiting room. Perhaps it was the incredibly happy mood that my daughter was in (see the video I posted a few days back). But there was something different in the air…
Let me just say, for a moment, that one would think that having a super happy kid waiting to go through surgery on their skull would be much better. I have to say, no. I fight so hard to be positive all the time, but there are simple facts that cause me to worry, and the happiness makes it a bit harder to swallow down those fears and be superman for my daughter.
They took her back without incident, from her. There is a very demoralizing weight that falls on parents that have to go through this, to any degree. As soon as she was around the corner, I could not stop crying. My beautiful bride and I stood there, in the now silent room, the laughter that was effervescent painfully missing, holding each other up from falling to our knees. But, in due time, we were able to compose ourselves and start the waiting process. We were told that the procedure should have taken about an hour (a far cry shorter than the 4+ that we are used to). An hour passed, then two…
Finally her doctor came out. I do not know about many others out there, but I look deep into the eyes of the doctor the moment that I see them, searching to see if this is going to be good news or…
She apologized that things took as long as they did, but our darling daughter’s skin is very thing and she was having a very difficult time closing the wounds. She smiled and said how well our daughter did, and then took us back. She explained along the way that we would be asked to come to the next cranio clinic so that we could talk as a team, with the team, about planning for the next surgery (the one that I have been dreading most of all). We spent the next two hours in recovery before we were finally released to come home. This was also a very weird feeling. We have grown accustomed to spending as short as a night and as long as a week in the PICU recovering.
Some of the most adorable aspects of recovery was my daughter realizing that we were in the room, reaching for mommy, hugging on her a bit, and then reaching for daddy – subsequently falling asleep on me for nearly 45 min… not that I am complaining. We always seem to have amazing nurses, this one was no different. She brought a popsicle for our daughter, after it started melting she crushed it up in a cup and left it with a spoon. Try as we might, we never were able to get our daughter to eat any of it… but our daughter surly fed it too me.
So, what does this all mean, where do we go from here. Well, though the path has never been clear, there are at least some landmarks that we have to use for the next few steps. My daughter is in need of many more surgeries to provide her the best chance at the best life she can have. The next surgery that we should be having will most likely be in April or May. It should be what is called a FOA (Fronto-Orbital Advancement). This procedure is where they move the front of the skull, including the eye sockets, forward of the coronal sutures (sutures is the fancy way to say gaps). I will write more on that procedure later as I feel I have gotten to a rather dark place in the process of this post already.
I thank all of you that sent messages, texts, emails and the like during this past surgery. It means the world to us to know that so many of you care so dearly for our daughter. As usual, I have been rather long winded, so I am going to end this post.
I AM A CRANIO DAD, I am scared out of my mind, and we are still moving.