Friday, July 17, 2015

Initiation Complete, Heading Home!

Much to everyone's extreme shock, Abby's CPAP initiation was successful! Honestly, we felt like we were going through this process purely as a formality - so we could at least say we tried. With how much she messes with the oxygen cannula, absolutely nobody thought she would tolerate a much larger piece of equipment attached to her face. But for the most part, she has! She doesn't like it, by any stretch of the imagination, but she doesn't attempt to rip it off her face, and after a few minutes will calm down enough to fall asleep.

I don't yet know what this means for avoiding surgery, but it's certainly hopeful. I anticipate that ENT/pulmonary will still want to do a sedated scope to verify that there isn't an obvious cause for her obstructive apnea that could be remedied, but beyond that, I just don't know. 

While surgical status is still up in the air, I did notice that the CPAP was successful in keeping Abby's oxygen saturations up overnight - zero pulse ox beeping! This is very encouraging. We were told that even if she tolerated the mask, the pressure might not counteract the apnea fully, so this was great to see. She'll need to have another sleep study performed with the CPAP mask on to determine what level of pressure is appropriate for treating her apnea, but the attending pulmonologist is comfortable sending us home with a machine and fine-tuning the pressure outpatient. 

Which means...we're outta here! 

Being inpatient for a couple of days with an 11-month-old Abby has been very different than being inpatient with a 5ish-month-old Abby. She is very busy and intent on grabbing all of the things. It's been fun trying to keep her away from all of the cords and tubes, as well as the ill-fitting sheets. Oh my goodness. First baby-proofing I've really had to do, hahaha. 

For your entertainment:

Makeshift babyproofing to the rescue!

Such a goober.

Wednesday, July 15, 2015

CPAP Initiation

Sounds like some sort of scary hazing ritual, right? From Abby's perspective, I think that description is probably fairly accurate.

Today, Aberdeen was admitted to the pulmonary unit at CCHMC to try to get her accustomed to using CPAP (continuous positive airway pressure). CPAP helps keep the airway open so as to combat Abby's tendency to obstruct her airway while asleep. If she can tolerate the mask, and actually leave it in place, it may allow us to avoid a surgical intervention. Fingers crossed. 

She'll be inpatient for a couple of days, and then we'll hopefully be able to go home. Toes crossed.

Friday, July 10, 2015

11 Months Old!

In one short month, we will have a one-year-old on our hands! Aberdeen is 11 months old today, and as of yesterday, officially has her first tooth! Her top two front teeth have been on the verge of breaking through for weeks, but the right one finally made an appearance, with the left only a few days behind, in my estimation! 

Abby is quite the roly-poly these days, and is in the process of figuring out that she can use her rolling to get to things she wants, which is amazing. She's on a bit of a sitting strike right now, but last week proved that she can manage short bursts completely unassisted. I imagine sitting on her own is right around the corner. 

She currently loves mimicking our silly faces, playing peek-a-boo, and entertaining people with her stories. She does not enjoy being measured at her doctors appointments or sitting, at the moment. She weighs 17lbs, 9oz and is 26.5in long! 

Abby had her ENT appointment this week to further discuss options for treating her sleep apnea. In addition to trying CPAP inpatient, ENT, pulmonology, GI, cardiology, and the kitchen sink are going to collaborate during a sedated procedure to try to track down an identifiable problem. If they can find something (like monstrous tonsils), they will go ahead and fix it right then. If not, then we will keep discussing options. It doesn't sound as though it's going to be a simple process. We've also been concerned about Abby's breathing for the last couple of days, so I took her to cardiology this morning, fully expecting for her to be admitted. They decided that her work of breathing was most likely due to swelling from being scoped at her ENT appt, so we're going to try some steroid nose drops and hope that it clears up. We were all VERY happy not to be admitted today!

Last, but not least: We had a blast on the 4th of July, finally visiting the Cincinnati Zoo and watching fireworks from our back porch. 


Dear Aberdeen,

You are 11 months old today, and I can't express how grateful I am to be home with you this evening. Your last month or so of medical appointments have held a lot of unexpected news: some resolved, some not. Each appointment reminds me that you could find yourself back in the hospital at any moment, for any number of reasons. I can't help but worry that this honeymoon period may soon be coming to an end. 

These nearly six months of having you at home have been more than I could have ever hoped for. We lead a life unlike most families we know, but ultimately one I wouldn't trade for anything. You, exactly as you are, make my life meaningful. You bring joy to others that I could have never imagined. You inspire others to do better - be better. Despite everything you've endured, you still radiate joy. It's unbelievable. I get so angry that you're sick. I wish that I could heal you. I hate so much that we have no idea how much time we'll get with you, but Aberdeen, I am so thankful for you

Earlier today I was trying to pinpoint my favorite memory, my favorite day with you so far. Focusing on the things that are amazing about this life helps to keep my mind off of my fear of what the future holds. Honestly, I think just sitting with you on my lap, making goofy faces back and forth at each other is maybe the best thing in the whole world. Your sweet little face cracking up into a giant smile is truly magical. I could watch you laugh forever. I love that when I pick you up, you grab onto me and hold tight. You know that I will fight to keep you safe with every fiber of my being. I cherish just being your mommy. The simple day-to-day giggles and snuggles are my absolute favorite moments.

Thank you for being so strong. Thank you for your sass and your fighting spirit. Thank you for your smiles and joy through everything. Thank you for keeping me grounded and challenging me daily. I love you, my beautiful girl - my baby bird.

Your Mommy