The Plan

We had another busy week full of appointments.  When I looked at my calendar the Friday before last, I breathed a little sigh of relief when I saw that we only had one appointment on deck for the next week.  Fast forward to later that night and we were up to four appointments.  The two biggies were endocrinology follow-up and a meeting to discuss Aurelia's Individual Family Service Plan (IFSP).  Endocrinology included some blood work with results still on the way, so I'll wait to update on that.  And can I just say that I truly hate blood draws?  It didn't help that the 30 minute wait at the lab was quickly butting it's way into nap time.  Poor Aurelia does not have good veins and sustained three pricks, precious little lamb.  There was a lot of calming and cuddling after that appointment.

The IFSP meeting was a lot more encouraging, productive, and exciting.  First, it was great because our Family Resource Coordinator, assessment therapist, and speciality service therapist came to our home.  Most of our early intervention services will be done in home.  It's nice to have one less appointment across the bridge.  Second, Joey was able to skype into the meeting and help make our plan.

We spent the first bit of time going through Aurelia's complete file and assessment.  She scored at 2-3 months in most areas and 4-5 in a few.  We were excited that she scored high on social-emotional and cognition sections.  Her lowest scores were in physical and adaptive sections.  Everyone agreed that a lot of her low scores were closely related to vision.  

After going over her assessment, Joey and I set our priorities and goals for the next 6-12 months of Aurelia's development.  So, here's the plan:

-Our first goal is that Aurelia would begin exploring the world around her.  This includes reaching for toys, people, things, food, etc.  Right now, Aurelia will only grab something if it's placed on her chest or in her hands.  If she drops the toy I've given her, it's like it never existed to her.  I dangle toys in front of her right out of her reach and she just smiles or looks to the side.  Our hope is that she will begin to reach for things around her when on her tummy, her back, sitting (which she isn't doing yet, but we're working on it), and all other positions.  We would like her to be able to entertain herself by picking up toys and playing with them.

-Our second goal is that she would tolerate tummy time for a longer period of time.  She doesn't mind being on her tummy for the first minute or two, but after that she gets a little agitated.  She has trouble pushing up on her arms and would much rather just lay her head down on the ground.  Getting better at tummy time will reflect a general strengthening of her entire body.

-Our next goal is that she would begin to eat solid foods.  We've tried some, but she pushes most of it out of her mouth and chokes on the rest of it.  Some of this may just be getting used to solids.  A lot of it is tied to her vision impairment.  She almost jumps every time the spoon hits her mouth because she doesn't see it coming.  But just 'cause she's so dang cute, here's a picture of her first day of solids:

-And our final goal is that she would sleep for five to six hours at night and take two or three 45 minute or longer naps again.  I can't wait for this goal to be achieved.  We're still getting up three or four times a night.  It's pretty exhausting.  

We'll have a therapist come to our house weekly to help us work on these goals.  And as once she achieves any of these goals, we'll go back to the drawing board and chose a new one to work towards.  We have our work cut out for us.  But Aurelia continues to show us that she is quite the little fighter.  

Aurelia's Newest Accessory

Plagiocephaly, yet another word I hadn't heard of before having our baby.  Add it to the list of hydrocephalus, torticollis, septum pellucidum, corpus callosum, cortical visual impairment, and optic nerve hypoplasia (which she does not have).  My medical vocabulary is growing.

Plagiocephaly means flattened head.  It most commonly occurs when a baby sleeps or lays in the same position.  Aurelia has never liked resting on her shunt, meaning the left side of her head is quite flat.  Luckily, this problem has a fairly easy, absolutely adorable fix:

She's smiling now, but the initial transition was ROUGH!  It didn't help that they cut the ear gaps in the wrong place.  Bless her pointy little head.  This pink helmet is a temporary fix.  I have something much more exciting planned for the real helmet, stay tuned.  

I took a birds-eye before shot of her flat little noggin.  But the camera is in the car and it's raining too hard.

In other news, our days have been filled with 6 month follow-ups.  We've seen her pediatrician and her neurologist already.  We still have endocrinology, genetics, GI,  and neurosurgery to go.  And weekly physical therapy sessions have commenced (including daily homework).   She also has a big assessment on Friday with a therapy place that has a few more specialists.  It's a busy time in the Hawkin's Household!

Is this the same baby?

Aurelia turned 6 months old yesterday and I turned 29.  Yep, my birthday is Lady Hawk's half birthday.  For my birthday gift, Aurelia only woke up once in the night (best gift ever!).  I feel like a new woman today.  I think I had forgotten what 5 hours of sleep felt like.  And I cannot believe how fast our little love bug is growing up!  It's so hard to think back to that fragile little baby with a very large head in the NICU.  Now she is so full of life and joy!  When I look at old pictures, I can't help but question whether the baby I'm holding is the same baby I'm looking at.  A lot can change in 6 months.  

I can't wait to watch her change and develop more over the next months and years.

Doing their job

Aurelia's blood reinfusion went as smoothly as can be expected.  It was a very long day at the hospital.  It's never fun watching your child get poked and prodded.  It only took four tries to place the IV this time around, and they didn't have to shave her head like last time.  Our little lady continues to impress her doctors with her strength.  They had to give her a little benadryl to sedate her since it was taking the whole medical team (plus mom) to hold her down.  But all the pain and discomfort of the day is well worth it because we think those stem cells are doing their job.  In the past week, Aurelia has started looking me in the eyes and smiling!  She's always smiled, but she hasn't been able to make eye contact.  Now she responds and laughs when I make silly faces.  She watches people walk around the room.  She's even started to try and reach to grab things.  It's an amazing feeling.  There are still a lot of times when she can't see, and she'll voice her frustration when her vision first leaves.  It's my hope that with some training, a few more stem cells (in August) and a lot of prayer, her vision will become consistent.

Smiling, happy baby!

Catching Up

No, we haven't dropped off the face of the planet.  We have been extremely busy, which does not allow for blogging.  However, there is a lot to catch up on from November.  There's too much to catch up on in one post.  When Dad and Mary got married, one of the questions Mary would ask us at the end of the day was "FSGBB?"  We'd tell her something FUNNY, SAD, GOOD, BAD, and BEAUTIFUL.  I think this was her way of getting around the one word teenage answer to "How was your day?"  I still use FSGBB when life feels like a whirlwind (i.e. the last few months).  

FUNNY- While preparing to write this post, I googled "FSGBB" to see if anyone else uses it.  The answer is no.  However, google did find an Urban Dictionary definition for "fsgbb."  Apparently, someone somewhere has decided that "fsgbb" stands for "Fuzzy Sex God in Big Boots" with tag lines including Captain Morgan and Beer Pong.  Kids these days, so strange.

SAD- Aurelia was diagnosed with Cortical Visual Impairment (formerly known as Cortical Blindness) at her Opthamology appointment.  In the most basic terms, CVI is a problem with the neurological processing of vision.  Her eyes and nerves work fine, but she cannot process the images she is viewing.  Certain things are more difficult for her to process, such as faces.  At this point we do not know what her CVI will look like longterm.  It's another one of those diagnoses that has a vast range of possibility.  Read more about CVI here.  The hardest part of the CVI diagnosis is the confirmation that there was brain damage.  

GOOD- We leave for Duke tomorrow.  Round 2 of Aurelia's blood re-infusion is Tuesday.  These trips to Duke give us such hope.  We're praying that the stem cells in the cord blood will help repair the parts of her brain that have been damaged.  And there's also the added bonus that we get to see Joey's parents.

BAD- My extended family has been through a lot in the last few years.  Currently, my mom's side of the family is going through a very hard, very tragic time.  We experienced an unexpected loss and are dealing with the aftermath of the traumatic circumstances.

BEAUTIFUL- It's always nice to end on something beautiful.

Isn't she just the cutest thing ever?  She is such a joy!  We are so blessed to be her parents.  

The Post I Thought I'd Never Write

I've heard friends say things like, "I never thought I'd drive a minivan," or "I never thought I would view 9 PM as late."  It's always followed up by, "And then I had kids."  Well, this is a post that I never ever thought I would write.

Last night the power went off at 9:30 PM due to a pretty spectacular wind storm.  The sound of the transformers exploding sounded a bit like a war zone.  I bundled up Aurelia in an extra swaddle, put some wool blankets on the bed, and snuggled in for a cold, dark night.  I was so thankful that one of the things Joey stressed before he left was that the emergency flashlight was in the drawer right beside the bed.  And wonder of wonders, my little girl slept for 3 1/2 hours straight.  But along with the 2:00 AM nursing came a diaper change. . . in the dark.  I had prepared for this before going to bed by laying out a diaper and an extra sleeper in case a blow out happened.  Always be prepared, right?  I set the flashlight on the changing table and got to work.  Now, one of the things my husband also should have done before he left was make sure the batteries in the flashlight were charged.  Aurelia was all cleaned up and I was getting ready to put her new diaper on when she made a grimicing face I'm all too familiar with followed by a little grunt.  And then the flashlight went out.  From the noise I heard in the darkness, I new this was a good one, this was the blowout I had prepared for.  So there I stood in the pitch black with a naked baby on the changing table, no light source in arms reach.  I remembered that there was a tea light on my bedstand for the air freshener I light when I change out the diaper pail.  I fumbled around for a match, finally got the candle lit, and realized that the tea light wasn't going to cut it.  Then I remembered that our unity candle from our wedding was on the pie safe in the kitchen.  I strapped Aurelia down to the pad (and thought to myself, "THAT'S why these things have straps") and used the tea light to light my way into the living room.  Reflected in the warm glow of our wedding memento, I found my daughter and the auxiliary sleeper covered in poo.  Miraculousy she didn't get any on the sleeper she was wearing or the changing pad.  5 wipes later, I picked my clean baby up off the changing pad, turned around, knocked over the flashlight which turned back on as it hit the floor. 

And that's it.  I'd always promised myself I wouldn't post about poop.  But I know that a certain subset of Aurelia's fanbase would be unforgiving if I didn't post stories like these (you know who you are Loya and Nong).  And sometimes you just have to laugh at the situations parenting puts you in.  While most people will remember the windstorm of Fall 2010, to me it was a real sh*tstorm (forgive the language).

Neonatal Follow-up

Last week Aurelia had her first Neonatal follow-up appointment.  The purpose of this appointment is to take an in depth look at her growth, development, and our family well being.  We meet with physical therapy, a nurse practitioner, the director of the clinic, and a social worker (in the future we'll add an occupational therapist, a developmental pediatrician, and a speech pathologist to that line up).  She'll have these appointments from time to time over the next several years to make sure she's seeing all the right doctors and specialists.

Let me start by saying, as I've said many times before, I LOVE our doctors at Mary Bridge and Tacoma General.  They are so caring and attentive.  I always feel that they take a personal interest in the health and well being of my little family.  There has only been one specialist that I wasn't a huge fan of, but it was more due to difference in personality than any issue with the level of care provided (and I have the option of taking Aurelia to a different specialist if I want to).  I've never felt like a number, a paycheck, a nuisance, or any other negative doctor/patient stereotype.  The reason I mention this is because I firmly believe that if you don't like your doctor, you should find a new one.  I have many friends that decide to go a more natural route when it comes to their medical care, and that's fine with me as long as it's done with the right attitude.  If you have a doctor that makes you feel like you're on an assembly line, don't assume that all doctors will treat you that way.  And that's my little bit of a soap box moment for this post.

With that said, this appointment felt a little like the doctors were on an assembly line for us.  We spent the morning in a private room and met with each person individually.  Aurelia did so well and everyone was very impressed with her.  She was pretty worn out after physical therapy, but besides that she was quite the trooper.  She passed all of her little milestones, although they would like her to start physical therapy to help strengthen her neck.  She definitely favors the side without the shunt, and we would like to address that before it becomes a more serious problem.  We also found out that she will most likely need helmet therapy when she's a little older as her head is a little pointed.  The nurse practitioner was very encouraged that although her head is misshapen, her facial features are all very symmetrical and don't seem to be affected by her head shape.  Bottom line, she's adorable.

The good news is that we are now on a two week break from any appointments!  She has her 3 month check up, opthamalogy, and another neonatal follow-up coming up in the next two months.  Then we have a break until her 6 month appointments.  It's just nice to not be at Mary Bridge every week.

The even better news is that she weighed in at 8lbs 9oz.  Yes, that is still itty bitty.  And yes, she is still in newborn clothes (at least for a few more days).  BUT that's a 10 ounce weight gain in one week!  We'll take it!

I have to admit that I feel exhausted right now.  I've heard this is common for mothers and I'm not too worried.  But I'm anxiously awaiting the day when Baby Hawk consistently sleeps longer than 2 hours at a time.  The nights she sleeps 3 hours at a time feel like heaven.  I keep repeating the mantra, "This too shall pass."  I look forward to feeling like my thoughts are more cohesive and my writing is less jumbled.  In the mean time, I'll enjoy that she is so precious and little, even if it's through bleary eyes and words that don't make sense.