5 Months/22 Weeks Old

Abby is five months old today and will be 22 weeks old tomorrow! (I'm doing a joint post...because...lazy). She is hovering just above 12 pounds these days and has recently started grasping and playing with toys, which is great! She has lots to tell us and is sleeping better and better at night. She very much dislikes the chlorhexidine wipes that she has to be bathed with as long as she has her PICC line, but loves to have her hair washed. We adore getting her sweet smiles and cherish her happy days!

Abby with her normal gadgetry

Things have continued to be perplexing this week. 

She had an additional cluster of seizures on Tuesday after being exceptionally angry all day long. They didn't last as long this time, and she responded well to her rescue meds. Her Keppra dose was increased after this incident, and she's gone a few days now seizure-free! The presumed culprit is a subdural hematoma that was initially thought to be un-troubling. This collection of blood on the outside of her brain is probably left over from her cranial surgery back in September, but as it is now being reabsorbed, may be causing irritation. In a few months, once it is gone, we'll play with her meds to see if the seizure activity had stopped.

Wednesday was a busy day, full of tests. She finally had her helmet scan completed without incident (yay!) and had a sleep study performed that night to assess why her oxygen saturation levels have been dipping in her sleep. Turns out, she has both central AND obstructive sleep apnea. Obstructive sleep apnea is the more common type, sometimes associated with snoring, where your airway temporarily flops closed and impedes breathing. Central sleep apnea is when your brain fails to tell you to breathe. Luckily, in both cases, Aberdeen recovers fairly quickly, but her sats drop enough that she will now require oxygen while she's sleeping. I've been suspicious that she was having apneic episodes for a while now, so was not particularly surprised by the news, but it is one more thing that we'll need to be trained to manage whenever she does go home. It also means we're back to tape on her face, blast!

Sleep study gadgetry

Routine EKG gadgetry

Starting Thursday, Abby has been vomiting a lot - much more than she used to, and more than anybody is really comfortable with. So far, we really have no idea why, so she's having some labs run again to make sure it's not a lingering or additional infection. The cardiologist on this week posed the question of whether the reabsorption of the subdural hematoma could be causing the vomiting, but we haven't discussed this with neurology yet, so who knows. It could also still be withdrawal related as she continues to be weaned off of the Ativan and clonidine she was on while intubated, or it could be the addition and increase of the Keppra. There are so many variables involved that it's very hard to pinpoint the reason behind the vomiting. She had a very short EEG done yesterday to see whether or not it seemed seizure related, but I expect the results to be inconclusive on that front. We are worried about her hydration status at this point though, and are keeping an eye on it while we try to sort things out.

EEG gadgetry...this kid has a lot of gadgetry

As always, thank you for your continued prayers as we deal with a growing pile of uncertainty and stress.

___________________________________

Dear Abby,

Sweet baby bird, you are five months old today. I'm so happy to tell you that we are finally safely away from the fear that surrounded the time after your heart surgery. That's not to say that things are easy now, as you certainly continue to challenge us, silly girl. 

You become more and more beautiful each day, and I love watching your big blue eyes twinkle as your face lights up in a smile. Your smiles get me through the day. As long as I get to see you smile, I believe I can handle whatever is thrown our way. 

This past month has been filled with the ups and downs that have come to define your time here in the hospital. It seemed like we were on a good path to finally get to take you home again, when you started having seizures. Though they've been scary, this new development really helped snap me back into a better place as I look toward your future.

The respiratory episodes that were occurring around your heart surgery were the most frightening thing I've ever experienced. Every time another one happened, a small part of me broke. When we were moved back to the step-down unit and talks began about sending us home without having figured them out, I truly started to panic. I knew that if you had another episode at home, we wouldn't be equipped to help you, and that would be it, you'd be gone. I didn't understand why the doctors weren't as worried as I was, and as discharge loomed ahead of us, I became more and more terrified. I could think of almost nothing else. As soon as you had your second cluster of seizures, I realized that we just don't know what's going to happen. You may never have another respiratory episode, but seizures instead. If not seizures, maybe something else. I can't spend every day worrying about things that I ultimately can't control. We'll just do our best to be prepared and focus on loving every moment we get to spend with you. 

Sometimes I try singing the song "Candle on the Water" to you (I still cry). I think that's what you are for me, a lighthouse of sorts. Something that keeps me focused and saves me from falling into what could be a dark place. I still experience a lot of difficult emotions, but it's the thought of getting to continue caring for you that ultimately pulls me out of them.

I'm looking forward to getting to take you home now. I want to acclimate you to the new house, reintroduce you to the puppies, and do our version of what other families get to do. Please get better soon, baby, so that we can go home. 

I love you, Aberdeen.

Love,

Your Mommy