ONE YEAR OLD!!!!!

Dear Aberdeen,

My beautiful Abby, baby bird, today you are one.  ONE!!!!!

HAPPY FIRST BIRTHDAY!!!!!

This past year has been the most challenging, fulfilling, heart-breaking, and glorious twelve months I have ever experienced, and I am so thankful that today we get to celebrate you! Frequently, when people remark on how quickly they feel their child’s first year went by, I have no idea what they are talking about.  It feels like your first six months lasted approximately four years, and the latter six months lasted about a year.  By that approximation, you are now five years old!  There are even some days it seems like you've always been here.  Either way – one year, five years, or forever, today is your day, Abbycakes.

As I look at you today, I am overwhelmed with the memories that this past year helped create and all the myriad emotions that come with them. I realize how dramatic that sounds, but I cannot think of a better way to put it.  I am amazed that you are still here and so incredibly proud of everything you have accomplished.  I can’t help but remember how tumultuous this day was a year ago: You were on your way here.  I had already been in some form of labor for over 24 hours and was very anxious for you to arrive so that we could begin what we knew would be a complicated journey.  We had no idea how complicated, but we knew that we loved you and were going to face whatever we needed to, head-on.  When you finally entered the world at 9:30pm (all 42 hours of labor, 7lbs 6oz, and 19.5in of you) and we were told shortly after that you might not make it through the night, I think I could actually feel myself falling apart. I didn't understand, couldn't cope with what I was hearing, and went into some version of shock.  We got a brief chance to see you, tell you we loved you, before the doctors ushered us out of the NICU, telling us the night would be taken hour by hour. But you made it.  And slowly, over the next year, I put myself back together.  I watched you survive, and thrive, and conquer.  You survived, and so would I. 

There are still days where I begin to feel myself unravel at the smallest provocation.  Sometimes all it takes is a sweet nuzzle of your head against my neck or a glimpse of your angelic sleeping face, and I feel my throat start to tighten and my thoughts begin to get muddled.  If there is anything that first night of your life taught me, it is that we must treasure every day, every moment we get with you.  Nobody can predict how many more moments they will get with their loved ones, and while it was a painful lesson to learn, I am glad that we learned it so early.  It makes everyday with you a little more beautiful, more memorable.  Maybe we’ll get to spend another twenty years treasuring each smile, laugh, and tear, and maybe we won’t, but I know that because we almost didn’t get a first day, that I will not let a single subsequent day go by without marveling at the absolute miracle that we were blessed with. You.

As we celebrate you, on this anniversary of your birth, the words that I think best describe you are: vivacious, affectionate, determined, playful, and opinionated. Your sparkly personality becomes more apparent with every passing day. Aberdeen, as of today, you have four teeth and are sitting completely on your own for short bursts – it helps if you have something really awesome, like your own reflection, to entertain you.  You are even starting to bear weight through your legs! You continue to love rolling around and playing peek-a-boo, and you have recently started dancing along to the music that it’s always been very obvious you enjoyed.  You bounce up and down and shake your head back and forth, cracking up at how deliciously fun it all is.

You have also compiled quite the list of accomplishments outside the realm of the average one-year-old.  You have faced four major surgeries, as well as a number of other sedated procedures, three sleep studies (one just last night), three MRIs, and a few CT scans. Along with those, you can add about a hundred hours of therapy, and countless echocardiograms, ultrasounds, and x-rays to your list of achievements. While I revel in dressing you up in fun headbands, you also proudly wear your helmet, eye patches, g-tube paraphernalia, and CPAP mask.

We celebrated your birthday with family and friends this past Saturday. It was wonderful to see so many of the people who have supported us throughout the year. I was worried that you would be overwhelmed and fussy, but you did wonderfully!!!! You smiled and played for all but the birthday song, and I think everyone had a genuinely good time! 

This next month or so is going to be busy, busy, busy! We are trying to touch base with all of your many specialists before we begin our new adventure in Texas! While I am very worried about leaving your amazing team of doctors here, I pray that we will find an equally wonderful team between San Antonio and Texas Children's. It does not currently look like we'll be able to do everything in one place, the way we've managed here (TCH is great, but a couple hours away from where we'll be living), but we'll make it work. Before we can leave, ENT, pulmonary, GI, and cardiology will be joining forces for a group of sedated procedures on the 24th of this month. Hopefully we'll get good news on all fronts! 

I hope that you know how proud your daddy and I are of you – how much we love you and how incredibly thankful we are to have you in our lives.  You are such a valuable, special person, Aberdeen. You are our world. 

I have no idea what the next year will hold for us.  I hope that it will be filled with trips to the river at our new home in Texas.  Maybe it will bring crawling or first words. I’ll pray constantly that it requires fewer days in the hospital.  If this past year is any indication though, I’m sure that it will be anything but boring.  You, my little spitfire, are NEVER boring.

Happiest of birthdays, my baby girl.

Love,

Your Mommy

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Aberdeen,
I can honestly say that I inaccurately predicted every single moment of the past year. That hasn’t always been a bad thing, but also not always good. I have routinely felt like I merely want to survive the next 24 hours with you. You’re a lot. When you were born at 2130 EDT at Miami-Valley Hospital in Dayton Ohio, I thought I had narrowed down the “things I didn’t know” about your first year. I wasn’t so naive that I thought I would get it all right, but I did think that I would get something right. Nope.

My feelings for you are super complicated. I cry when you giggle sometimes, laugh when you pout, and feel fear for your future. Lately, you’ve taken to giggling when I try to make funny noises on your neck. That’s pretty awesome. You listen to me when I read you books or when I make noises that aren’t just mimicry of your “eh” noises. You are really here and in the moment. I’m trying to be more present for you.

Last night the two of us spent the night in the hospital at CCHMC. I felt a lot of things, because it will likely be the last night that I spend at CCHMC in quite a long time. It’s a place that has given you so much and I’m so thankful towards it, but last night they were putting cold stuff on your head and straps around your body, etc. The whole time you were crying and staring right at me. I know it was the right thing for them to be doing to you, but your face was asking me to stop them, asking me why I was letting them do it. Yep, that was a lot.

You calmed down and went to sleep soon after, but I spent the whole night waiting for something to go wrong. I technically slept for 6 hrs (according to my super awesome Microsoft Band), but what it couldn’t tell was that my mind and heart was focused four feet away to where you laid. And I just realized that’s what the last 365 days has been, me sleeping somewhere else, but my mind and heart were always laying right next to you.

I’m proud to be your father Aberdeen, for the last 8,760 hours (a full 8,756 more than we might have had). I am thankful to my Savior for letting me meet you this way. I continues to correct me and make me stretch. I am forever grateful for you, my Aberdeen Wren.

From,
Dad

Family Pictures!

It's less than a week until Aberdeen's first birthday, and since I'm already experiencing all of the emotions, I thought I'd post some of the beautiful photographs from another emotional day. 

Like putting together Aberdeen's room, having family pictures taken was one of those "normal" things that I really clung to while I was pregnant. Though it took 11 months to finally get them done, I treasure them greatly. The day was a little on the hot and humid side, so after being in the backyard for a little while, Aberdeen let us know that it was time to move things indoors. It wasnt what I'd planned, but since very few things since her birth have gone according to my plan, we followed her lead. I'm so glad we did. These photographs perfectly capture how I've felt about the last year and are everything I could have hoped for.

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.

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.

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. 

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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.

Love,

Your Mommy