Magical McDonalds

I don't have time for a long post because life is crazy packing for Eli's first trip to Disney World! So instead I'll share something that has become a daily part of my life (really, I read this essay at least once a day).  Holland isn’t a place I’ve ever given much thought to. But now, it crosses my mind at least once a day. I don't remember where I first saw the essay "Welcome to Holland" (it was some time after the troubles with Eli began, I know that). Some parents don't like it, but has become my anthem, my comfort, my lifeline. I can’t say I love Holland yet…but I’ll get there. Welcome To Holland by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bun...

Lots of moms who have babies going through this surgery say the wait while the baby is in the OR is the worst part. It wasn’t that way for me. It sucked, but honestly, I just laid down on a bench and tried to sleep. A few hours later Dr. Smartt came out and told us they were done and everything looked great. He did have to receive a blood transfusion (not always necessary with the short endoscopic surgery) as his hemoglobin was low to begin with, probably due to his frequent blood draws, but other than that everything went 100% normally. Someone directed us up to the PICU floor and we FINALLY got to go in and see him. The first thing I noticed was he was sniffling like you do after you’ve been crying hard for a long time and you can’t catch your breath. I felt so guilty we couldn’t be there earlier to comfort him. His head looked pretty brutal, with WAY more of his head shaved than I expected and dried iodine and blood (mostly iodine) all over the two zigzagged scars that now decorate...

We immediately started researching craniosynostosis and preparing for his surgery. The hospital called us to set up a second appointment with Dr. Smartt and a consultation with the neurosurgeon we would be using, Dr. Weprin. At my request, we had also been referred to an orthopedist and Scottish Rite to discuss Eli’s length. Wanting to cover all my bases, I sent emails with photos of Eli’s head to a few pediatric craniofacial plastic surgeons who specialize in craniosynostosis and do email recommendations, but in the end decided I was happy with Dr. Smartt and Dr. Weprin and their experience and approach. Our consultation appointments with those two doctors were very short and sweet. Photos and 3D scans of Eli’s head were taken, they answered all our questions, and their back office team started working to find a date they were both free before Eli’s four month “deadline.” Eli was NOT sure about the 3D scan We had our orthopedic appointment at 7:30 AM on my birthday. Not a gre...

A note on Will: I haven't really mentioned Will much, except in passing. That's mainly because all this is just me speaking about all the thoughts and feelings I remember having over the past several months. I can say without a doubt he has been the rock for our family throughout this entire experience. He is so steady, he truly is the calm to my storm. But that doesn't mean he hasn't been just as deeply affected by all this as I have. Recently he read through all the posts I've made so far and afterward said it was hard to read, and that when he looks back on all our time before the birth and in the ER wondering what was going on, he just remembers being so, so tired. If he ever wants to speak more openly about what this has been like from his perspective, he is welcome to do so, but until then this is all just going to be from my point of view. Out of respect for him I can't try to tell his story for him. The next day was a revolving door of doctors. We s...

The next two weeks passed normally. He appeared to be a normal length, still very short but nothing unheard of. It looked like we had escaped unscathed and the horror of the previous month would eventually become a painful but distant memory. At about a week and a half old, we started noticing him doing this weird twitch thing. Very young babies have extra sensitive startle reflexes (called a Moro reflex) so if you google, “my baby is twitching,” that’s what you’ll think it is (remember how I said don’t google? Clearly I can’t take my own advice). I mentioned it to his pediatrician and she gave me her cell phone number, and told me to get a video of it and send it to her. A few days later I finally managed to get a clear video of his entire body when he had one of the episodes, and I texted it to her right away. About an hour later, I was washing dishes and didn’t have my phone on me. I went to grab it and saw I had three missed calls from Eli’s pediatrician. I remember this moment so...

Right after the induction was scheduled  my mental state improved somewhat. Just knowing there was an end in sight (so I thought…) helped immensely. That Sunday (February 26 th ) Will and I arrived at the hospital at 4:30 to begin the induction process. My  other  best friend was luckily off work during this time and  was able to  drive up, and that night she and my parents and my grandmother brought us Whataburger for dinner, the last meal I would be able to eat until after delivery. Neither of us slept well. I woke up at least three times needing to go to the bathroom, and I was in so much pain I couldn’t walk on my own;  Will  had to get up and help me walk across the room to the bathroom. He wasn’t sleeping well either, apparently  the  couch  was VERY uncomfortable. Finally morning  arrived, my doctor came and checked me out, and started me on Pitocin. I had told my family there was no reason to show up to the hospital earl...

A preface: this next part is not easy for me to talk about publicly. I've always prided myself on being tough and never showing my weaknesses. It's very strange for me to put this out there for everyone I know to see. But, like I said, if this helps even one person going through a similar experience feel better or not so alone, I've accomplished what I set out to do.  I called the perinatal office immediately after speaking with my doctor, and they couldn’t see me until February 13 th . An entire week. It might as well have been a lifetime.  I spent the rest of the week googling, reading,  and  alternating between promising myself it would be fine and convinced our baby was in mortal danger. Finally, the 13 th  arrived. After  sitting in the  waiting  area  for an interminable amount of time, we were led to a room and an ultrasound tech came in to do the preliminary ultrasound. The screen was across the room, but if I squinted I could ma...