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. 

________________________________

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

End of June Updates

June ended up being a much busier month than originally anticipated!

All of the things in red are Abby appointments, whew.

We received the news from neurosurgery regarding Abby's CT scan and got her in for a sedated MRI to determine whether or not she would require a shunt to drain the fluid pooling in her brain ventricles. Thankfully, it was determined that a shunt was not going to be necessary! Yay!!!! Everything is flowing as it needs to, it's just not doing so in a symmetrical fashion. At this point, nothing needs to be done to remedy the ventriculomegaly. Great news. The craniofacial team will do another assessment of her skull in September before we move, but we are otherwise done with Neurosurg for the time being.

We headed back to orthotics to get Abby a different helmet (helmet #3 if you're keeping track). It doesn't have the big hole on the top like the other two did - this is to encourage her skull to round out more. So sweaty.

Luckily they put wiffleball holes in the top so her poor noggin can breathe a bit!

Ophthalmology changed up her patching routine to 2 hours a day, but only the left eye, as her right eye muscles need more work. I took this opportunity to get her some more stylish eye patches!

Abby also had her sleep study in the middle of this month. We just got the results yesterday, and unfortunately, they are not what we were hoping for. Abby's sleep apnea is worse. She is obstructing more frequently than she was at her initial sleep study in January, and her sats are dropping lower during those episodes. This is bad-news-bears for her heart. In adults, untreated obstructive apnea can cause the blood pressure to rise and the heart muscle to thicken. As Abby's heart muscle is already significantly thickened, it is necessary to start looking for other options to address the apnea, since the oxygen she is receiving overnight isn't doing what we need it to do.

The first step is to attempt a CPAP trial. I insisted this be done inpatient, considering the only time that we've attempted CPAP with Abby was when she coded after her heart surgery. There was no way I was going to try that at home. This means a couple days on the pulmonary floor at CCHMC (it will be so weird not to be with our cardiac people) sometime in July. If this goes well, then we'll start using the CPAP mask at home. If not, we have to start looking at surgical options. An X-Ray of Abby's tonsils and adenoids was taken today, as they are the frequent culprit in obstructive apnea and removing them is the least-complicated surgery, but from reading the report, it sounds like they're fine. We will be consulting with ENT and their surgeons to figure out what we look at next. 

Cardiology is encouraging us to get on top of this before we move, which I understand, but definitely makes things even more hectic than expected. 

So that was June. We did get to celebrate a lovely Father's Day and cheered as Abby mastered rolling belly-to-back, but yeesh, I hope July will hold fewer surprises on the medical front!

10 Months Old!

10 months. 10!!!!! Abby has now been an outside baby longer than she was an inside baby and can finally celebrate the great accomplishment of being out of the hospital as long as she was in the hospital (approximately - I didn't count days. Also includes our first two blips at home). Good job, baby bird!!!! 

Abby has some big stuff coming up this month. Tonight, she has her repeat sleep study to assess the severity of her sleep apnea and whether or not she needs to remain on oxygen at night. Given that we cannot, for the life of us, keep the cannula in her nose for more than five seconds (she pushes it out even when she appears fast asleep), it would be awesome if she no longer needed it! I think they should make sleep studies a dual venture: hook the kid up to examine their sleep habits, and hook the parent up to study the effects of sleep deprivation. So much valuable information to be gathered. 

Abby also has her MRI next week, which I am admittedly quite stressed out about (please see previous post for details). She still has this lingering cold, which needs to be gone before it will be safe to put her under general anesthesia. Hopefully this next week will be enough time to finally kick this thing.

We've been getting lots of questions lately along the lines of, "Is she mobile yet?" "Is she eating by mouth yet?" "Does she have any teeth yet?" "Is she saying mama/dada?" In short, the answers are: nope, nope, nope, and nope. And that's ok. She's making progress little by little, and given all that she's been through, I think that's pretty fantastic. She IS making all sorts of adorable noises, grabbing her feet, rolling onto her stomach, working super hard to roll back off of her stomach, and is getting closer and closer to sitting unassisted. We attempt tastes of baby food, which she promptly gags and pukes up, but she gets the nutrition she needs through her g-tube, and that's what matters. She enjoyed her first baseball game, finally made a trip to church, admired the jellyfish at the aquarium and planes at the USAF museum, slept through a strawberry festival, and has been frequenting local parks. She's very busy. :)

Abby currently loves grabbing faces, including the dogs', lounging back in her stroller with her feet up on the lap bar, helping with her g-tube stuff, and reading stories with us. She is pretty much happy unless she's over-stimulated, and just generally a joy to be around. We like her an awful lot. 

Jameson wrote Aberdeen's letter this month. :)

_______________________________

Aberdeen,

I sit in our Ohio home with just the dogs while you and Mom are at the hospital doing a sleep study. I'm pretty sure you're not going to enjoy it very much (smelly glue on your head), but maybe I'll be pleasantly surprised. Sitting here has given me some time to think about you and your life. You've been outside of Mom for 7,296 hours! That means a lot to me, because I didn't always know that would happen. But you've spoiled us rotten over the past few months. We've been living at home and not going to the Emergency Room, or even the hospital, except when we wanted to. Thanks!

 

You're hollering at me a lot more, which is nice. You get super excited when I carry you facing me in your car seat.

 

I'm super bummed when I have to leave you, but I feel this new drive to do a really good job so that you'll always have what you need.

 

I love your smile and your pretty eyes and dancing with you. My favorite time of day is reading to you before bedtime. I really think you're listening to me (even when my Winnie-the-Pooh voice is atrocious). We snuggle together with your head really close to mine and we go on adventures through bizarre lands of Wockets, Circuses, Dragons, and Tiggers. As we roll around and look at pretty pictures together I'm truly happy. I laughed so hard the other night that tears started running down my face. I was trying to do all the voices in a book and found myself doing a 1950's radio announcer voice for an 8-year old who was talking about zig-zaggity ladders. I don't remember being that happy and carefree.

 

Lately, I've felt this urge to explain how tough we are to other people. It's the weirdest thing, because they'll ask if you're doing alright and I feel like telling them all of the things that you have coming up and that you may never be alright, so there! It’s like you being alright is “wimpy” and if you’re not doing poorly then what makes us special? Pretty weird feeling, but I’m sure I’ll get over it.

 

The future with you is always a big mystery. I’m believing and trusting God more, which makes it more bearable.

 

Thank you for still being here Aberdeen. 

 

Love you always and forever,

The Luckiest Dad in the World

Updates on the noggin

A lot has been happening lately, so I thought an update was in order...

Abby had a 3D CT scan done in the middle of May as a follow-up to her cranial surgery back in September. With some creative soothing and quick-thinking by Jameson, we were able to accomplish this unsedated, woohoo! The scan was to determine how the skull bones were healing post-op, if there was any re-fusion of the sutures, etc. We would be following up with her neurosurgeon a couple weeks later.

Thanks to MyChart, we were able to see the radiologist's report fairly quickly, and while we aren't neurosurgeons, we knew that things didn't sound overly awesome. There was evidence of possible fusion of both coronal sutures, as well as a big, scary word: hydrocephalus. Basically, hydrocephalus involves a buildup of fluid in the brain ventricles that can lead to increased intracranial pressure (which can cause brain damage). We sort of expected the neurosurgeon to call us in right away for an emergency surgery of some sort, like he did last time, but a few days went by with no word.

We went ahead and called neurosurgery to get their thoughts, since consulting Dr. Google had been rather fruitless, but they weren't confident in the accuracy of the CT results and recommended that we get Abby in for a sedated MRI to determine what exactly was problematic and what just required watching - for Abby, sedation means general anesthesia. After some scheduling complications, her MRI is now set for the morning of June 17th with cardiology monitoring her for the rest of the day. If the MRI suggests increased ICP, neurosurgery will need to place a VP shunt within the week to drain the excess fluid. We're really really hoping this won't be necessary.

At her neurosurgery appointment, which was this past Tuesday, we were encouraged to hear that re-fusion of only the right coronal suture is suspect, and that depending on how helmet therapy goes over the next couple of months, she may not need another craniectomy (surgery for craniosynostosis). 

Speaking of helmets...

At the end of May, Abby was fitted for her second helmet, having solidly outgrown the first. I put all of my limited craftiness into decorating the new helmet, which turned out pretty cute, if I do say so myself. Sadly, neurosurgery wants her in a DIFFERENT kind of helmet this time, so back to the orthotist we went today, to get her head scanned yet again. Hopefully we'll receive the new helmet and get back on track next week.

Abby, looking like an unimpressed, but adorable little garden gnome at her scan today:

Bye bye pretty helmet. 

So, that's where we are. Despite Abby having another cold, her behavior does not suggest ICP, so we're holding out hope that the results from the MRI will be positive. 

I was looking through old pictures the other day and thought it would be fun to show you how great her head is looking these days. I barely remember it looking the way it did pre-suturectomy and am amazed at the change since September.

August/September:

 

May/June:

9 Months Old!

Dear Abby,

Today, we celebrate so many things: You are 9 months old! You are growing so beautifully and have had such a spectacular month. You are also 39 weeks old today. In less than a week, you will have been an outside baby as long as you were an inside baby. It's amazing how differently those two periods of time feel. I cared about you so much before you were born, but it can't even compare to the love I have for you now, the love that I've developed since becoming your mommy. As I celebrate my first Mother's Day, I am so so thankful for the ways you've changed me and opened my heart.

I look at you with absolute awe. This tiny, beautiful soul who has conquered the odds and faced so many challenges, all with a smile on your face. A smile that completely breaks me. I can be in the foulest of moods on the most exhausted of nights, but you smile at me and, like magic, I turn into an ooey gooey pile of weepy emotion. Even with all of your complications, your broken little body, I know that I got the best baby in the entire world. I don't know what I did to deserve you, but I will forever be thankful that God was able to look past all of my faults and bless me with the most beautiful of gifts. You will always be my baby, no matter what happens, and I will always be your mommy. Nothing can ever change that.

I'm so proud of you, Abby. The ways you've changed over the past month are astonishing. You're tolerating our trips out into the world better and better. It always takes you a little while to adjust and warm up, but once you do, it's so much fun. We took our first trip to the zoo, where you met a bunch of wonderful friends and had your first interactions with other babies. We've gone to restaurants and the park, you're even riding in the big-girl stroller now! You've started rolling onto your belly, showed some interest in a rice rusk, are lifting your head up more and more while laying on your stomach, and can sit in the bumbo seat for a few minutes at a time. You are making so many noises and love banging toys together. All things you weren't able to do a month ago. 

From a health standpoint, you're doing as well as you ever have! You've maybe caught your first cold, so we have to keep a close eye on you, but all in all, you're really doing wonderfully. GI issues are our biggest day-to-day struggle, as you still have a tendency to puke quite a bit. We have your next 3D CT scan this week, and then our follow-up with neurosurgery at the beginning of next month. At that point we'll find out what the plans are regarding another cranial surgery. Your heart will always be a concern, but right now just requires medication and monitoring. Hopefully, it stays that way for a long time.

I love you, my sweet girl. I'm so incredibly grateful that I get to spend every day with you, watching you grow and experience the world. I am grateful that I get to be your mommy.