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.

8 Months Old!

Abby is 8 months old today! Other than medical/therapy appointments, and the frequent walks around the neighborhood, we have now ventured out in public with her twice!!! Which I am unbelievably proud of. She has done so well lately, enjoying her ability to experience the world at increasing frequency. She is currently most fond of kicking her legs and flapping her arms like the little birdy she is, as well as cuddling her stuffed animals and splashing in the tub. She is not overly fond of any attempts at feeding or having the bright sun shining in her face!

This past weekend brought Easter celebrations, and the Locklear clan along with them! The weather held out, and we had a really nice time hanging out with family!

This past week also included an interesting cardiology appointment, which I'm honestly not sure what to make of. On one hand, Abby seems like she's doing well.  She isn't exhibiting symptoms of heart failure - she's happy, energetic, and growing like a weed (16lbs now!). However, the other hand reveals that the obstruction caused by her hypertrophy is a fair bit worse. For now, because she's asymptomatic, we will continue to control the effects of her HCM with medication - but when the time comes that she starts exhibiting symptoms, we will have to address the possibility of another heart surgery - which had not been on our radar.

There are two possible surgical prospects: the first is a myectomy, where they shave down the overgrown muscle, temporarily eliminating the obstruction. The procedure does not stop the muscle from growing back, so is not recommended unless the hypertrophy is causing a serious problem. We had previously been told that they don't really send kids for this surgery, but it turns out, if the conditions are right, they may. The other is a heart transplant. When Abby had her first heart surgery, it came to be our understanding that because Abby has a number of health issues unrelated to her heart, that she may not be a good transplant candidate. For now, we just watch and wait.

I feel as though I'd been doing a pretty commendable job of not living our day to day as if the other shoe were about to drop, but in these last few days it's been a struggle. I hope that Abby continues to thrive, but it's hard knowing that next week it could be a different story. Or maybe not next week at all, maybe in a year, or five. We really just don't know.

On other fronts: Abby will have her follow-up 3D cranial CT scan in May, and meet with the neurosurgery team at the beginning of June. Hopefully at that point we will have a better idea of the timeline for her next cranial surgery. We're keepin' on keepin' on with the helmet until neuro/plastics advises otherwise. GI issues continue to challenge us, but these may just need time to resolve. We are on maintenance status with neurology, pulmonary, and nephrology right now, and will have another appointment with ophthalmology early next month. OT, PT, and Speech have been very helpful in aiding Abby's development. Though it's a lot of work for all of us, I truly believe they've made a noticeable difference. 

I'm pretty sure I missed something in there. There's a lot.

To complicate matters, we just received confirmation that we will be moving in the Fall. We knew it was a possibility, but so was next Summer. Yet, this Fall it is. Trying to recoordinate all of Abby's care at a new location is going to be a doozy - a task I am not looking forward to at all. We have a couple of ideas regarding where we might be headed, but it's just too early to know at this point. I sincerely hope that we are able to find care for her as exemplary as that she's already received.

The girl at Starbucks gave me my drink today for free, so there's that. :)

_________________________________

Thoughts from Jameson:

Each day I think a little bit about how we got "here" and what "here" is. "Here" is a place that I can forget the past in. But it's also a place that fear of the future can come rushing in with the slightest provocation. Right now every smile and giggle has the ability to make me burst with joy and slay my heart with fear. I'm so scared of getting more emotionally entangled with my beautiful daughter, because I know what the future holds. At the same time, I can't help wanting to hold her and kiss her smiling face. 

I just want everything for her and I may not be able to give it.

All that said, I am proud to have you in my life, my dear Aberdeen Wren Locklear. I'll provide everything I can for you, whatever it may take.

I'll love you forever, I'll like you for always, as long as I'M living...my daughter you'll be.

Updates and an anniversary

It has been one year since the ultrasound that turned our world upside-down.

What a day of highs and lows that was. We were thrilled to find out that we were having a little girl, our Aberdeen Wren. Jameson had suspected from the start that we were having a girl, but I hadn't had any strong inclinations either way, so was elated to finally know! Everything at the scan had seemed to go well, but our world came crashing down a few hours later when we got the call that something might potentially be wrong. Though it was still unclear at that point what the issue was or what it might mean for Abby's overall well-being, it didn't matter, something was wrong and it was devastating. 

Though I will worry about Aberdeen every single day for the rest of forever, as any parent would, I don't think anything was as anxiety-inducing as the concern I had for the questionable health of our unborn child. The surgeries have been hard, the recoveries have been harder; waiting to see what Abby would be like, if she would be ok, was the hardest thing I've ever had to do.

It has been a challenging year, no doubt, but being able to see and love on our sweet baby, makes the difficult days so much easier to deal with.

Abby's procedure last week went great, even better than expected. We got to say hello to some great friends (families and nurses), and then we got to go home! It was so reassuring to know that Abby can now tolerate small procedures without landing herself back in the CICU, and that her heart surgery really has made a difference. 

The rest of this past week has fit in nicely with the last-week-of-March-highs-and-lows theme we seem to have started. 

Highs: Jameson's birthday was this week! Yay! Abby's vomiting was not as frequent - we started her on a new medication a few weeks ago, and while it certainly hasn't fixed the problem, we're happy it's at least helping! Abby had her last Synagis shot and flu shot booster, so we should be able to start taking her places here soon without the hightened risk of contracting a respiratory virus! 

Lows: I slipped down the stairs while doing laundry on Wednesday, and bruised up my leg and ego pretty badly. Seriously, you'd think I'd be able to walk up and down stairs with all that dancing growing up, but no. I'll be fine, just a klutz. The balloon in Abby's new g-tube button popped last night (see image below). These things are supposed to last months, but this one only made it a week. We had a spare on hand and got it all fixed up, but gosh I hope this isn't a representation of what's to come. 

All in all, things are going well enough and we're looking forward to Spring and getting out of the house some more!

Home!

We are already home!!!! Barely more than 24 hours after being admitted for Abby's procedure, and we are ALREADY HOME! 

Everything went smoothly today during the endoscopic removal of Abby's PEG tube and placement of the AMT Mini button. She spent a whopping 45 minutes in the OR, and briefly recovered in the PACU before being sent back to the cardiac step down unit for observation throughout the afternoon. This is the very first time that she has been put under general anesthesia, intubated, and NOT had immediate complications. We could not be happier!

7 Months Old

I know I'm a couple of days late on this, it's been a busy week!

We have been home for seven weeks now!!! Abby has been doing well overall, making huge strides in her ability to reach, lift her head, and hold a supported sitting position. We were told numerous times that after about a month at home we would probably start to see her really start to progress developmentally, but I didn't expect to see so many improvements in such a short amount of time! With her newfound skills, Abby has developed a great love of grabbing my sleeves, hair, face, and anything else she can get her hands on. It's really pretty funny.

This has been Abby's biggest area of struggle.
The fact that she can look at this toy now while on her tummy is amazing.

She has really gotten great at sitting.  She is even starting to support herself on things in front of her.
Pretty soon, she's not going to need me to hold her up!

Abby has continued to average about four appointments a week. She had recently seen GI, ophthalmology, nephrology, radiology, complex care (pediatrician), the interdisciplinary feeding team, pulmonary, and cardiology (along with PT and OT). We will follow up with orthotics and neurology in the next week as well, and she will start regularly seeing speech therapy for feeding therapy. She handles her demanding appointment schedule pretty well, all things considered. It requires quite a bit of time in the car and definitely doesn't coordinate with her preferred nap times. Hopefully as we get more of her post-hospital follow-ups out of the way, things will settle down a bit. 

Abby has had strabismus and nystagmus for some time now.   To ensure that the strabismus does not start interfering with her vision, we now have to alternate patching for an hour each day.  Pirate Abby is not a fan, arrrr.

We will be heading back to the OR next Thursday for a very scheduled procedure for once. Abby is due to have her long g-tube changed out for a button. Tubes aren't designed to last forever, and because her tube was initially placed endoscopically, it will need to be removed the same way. Once she has the button setup, we will be able to change out the tube at home. Hopefully we will be inpatient for a max 48 hours - I've explained this to her many times. It's going to get through to her, I just know it.

________________________________

Dear Abby,

You are now seven months old! You have changed so much in the past month, it's astounding! You can now hold your head up for a couple minutes when laying on your tummy, can stay sitting up while hanging onto my fingers, and can reach and grab everything in sight! You like to tell us long, involved stories, and despite the fact that you have 10,000 toys, you've decided that washcloths, sleeves, bibs, and my hair are the absolute best things to play with. You have developed a great love of Silly Songs with Larry and kicking the crunchy paper at your medical appointments. You make the funniest faces and are so quick to smile, it lights up my day.

Yummy bib

In the past couple of weeks the weather has started improving and we've gotten to have some really fun experiences with you! We've taken walks around the lake behind the house, and you even got to experience snow for the very first time. It has been so nice to get to do things with you that have nothing to do with doctors or therapy - things that are truly just for fun! I hope that as the winter ends and respiratory virus season along with it, we'll get to have even more adventures! Maybe we can go on a hike, or to the park. We might be able to take you to a restaurant or out shopping even! I know that we'll have to take it easy, but it would make me so happy for you to get to experience life outside of the house, car, or doctor's office. 

Beautiful little snow baby

Looking cool on her walk

We have to take you back to the hospital next week for a quick procedure, and while I've tried to stay optimistic about how everything will go, I'd be lying if I said I wasn't nervous. I've loved having you at home so much, that I don't even want to think about another extended admission. You're going to do great though, you will, and we'll be back home before either of us know it.

I love you, sweet baby. This past month has held so many gifts and surprises as you've thrived and grown. I can't wait to see what the next month has in store for you. 

Love,

Your Mommy