Thursday, November 29, 2012

Embry: MRI and Pediatric Neurosurgeon

Hi All!

I have a million pictures to share of Embry from weeks 7 and 8 of her life, including her first holiday- Thanksgiving! I am still wading through a million pictures and will hopefully get a post up by this weekend.

Today we just wanted to share the news of Embry's biggest appointment to date. Today was her in depth MRI at Children's Hospital where she was fully sedated and 400 images were taken of her brain and spine and we had our follow up appointment with the Pediatric Neurosurgeon group we saw when she was 10 days old.

We could not have asked for better news. Embry got a "clean bill of health". We are so overjoyed! Here's a brief (as possible) summary:

  • Hydrocephalus
    • The first time an issue with Embry's brain was brought to our attention was when the perinatologist told us she had hydrocephalus.  They thought she had hydrocephalus because her ventricles were enlarged.  Enlarged ventricles, in turn, means there's extra cerebrospinal fluid in them (thus "fluid on the brain"). 
    • Today's MRI confirmed that the amount of fluid in Embry's ventricles is not increasing.  If anything, the amount of fluid is decreasing.  This means that she will most likely NOT require a shunt or any surgery as a result of the fluid.
    • I asked the neurosurgeon whether Embry has "hydrocephalus."  The neurosurgeon said no.  "Hydrocephalus" is where there's extra fluid on the brain and a surgical procedure is required to correct the cause of the excess fluid.  Rather, Embry has "ventriculomegaly," enlarged ventricles because of excess fluid.

  • Cerebral Atrophy
    • After our first MRI, the neurosurgeon told us that Embry has cerebral atrophy.  This has been our biggest concern ever since.  The term literally means "wasting away of the brain."  It's not a great diagnosis.  Nothing a parent wants to hear about her child's brain.  
    • Today's MRI, the neurosurgeon told us, strongly suggests that Embry does NOT have cerebral atrophy.  YES!!!!!!!!!!!

  • Intraventricular Hemorrhage
    • After our first MRI, the neurosurgeon told us that the "hydrocephalus" and all related issues were probably caused by an intraventricular hemorrhage (IVH).  An IVH is a hemorrhage that occurs inside the ventricles.  He didn't know what caused the IVH.
    • Today's MRI confirmed that Embry probably had an IVH.  We still don't know what caused it, but it most likely isn't a genetic issue. 
    • An IVH, by itself, isn't a concern. 

  • Benign Macrocephalus
    • This is Embry's new diagnosis.  "Macrocephaly" means "unusually large head."  "Benign" means "harmless."  In other words, Embry just has a big head.  This will allow for her brain to grow whenever it wants, to as big as it wants, without her skull getting in the way!
    • In all seriousness, Jacob and I both have large heads.  The neurosurgeon told us that head size is genetic.  Also, Embry's length/height, weight, and head circumference have all been measuring in the high 90 percentiles since she was born.  So her head is proportionate to her body.

Overall, the doctor told us that if we wanted to we could have one more MRI (like in October, a quick 5 minute scan with no sedation) in six months to follow up, but he even said that may be "overkill". He told us to go home, put away all of our charts, books, etc. and enjoy our normal baby girl!

I cannot put into words what it was like to hear all of this today that our baby is completely normal and healthy. Since September 24, the day we found out about the fluid on her brain and I was hospitalized for my blood clot, we have been on a roller coaster of emotions. I remember being told your newborn will be rushed to NICU after birth and probably be transferred to another hospital to have surgery then she came out perfect and we felt relieved for a few days! Then ten days later being told that our baby's brain is smaller than normal, she had a hemorrhage and to possibly expect her to have special needs. Then meeting with a neurologist who told us she seemed fine to him. Everything has come down to this big MRI today and it was so incredible to hear the news we'd wanted SO badly. I know Jacob and I both have had a time dealing with this and will never take our health or baby girl for granted!

Phew- dry my eyes and move on!

Anyway, besides our fabulous appointment the actual sedation and MRI went well too. Embry couldn't have anything by mouth after 4:30 am, which I was really worried about. She went down around 9:00 pm last night and got up at 3:00 am to nurse. We all got up around 6:15 am today and she was definitely hungry, but never once cried! She didn't go under until 9:00 am. I know, perfect baby right? She definitely was starving- chowing on her paci and anything else (her carseat buckle, clothes, etc), but she was all smiles at the hospital and never fussed.

After the MRI we got to go right back into recovery and be with her as she woke up. It took her awhile, but she started to stir. We were told she did great with the anesthesia and didn't need to ever be intubated. (We were told beforehand that a lot of babies need to be intubated because their brains aren't fully developed and they forget to breathe). We were released and by the time our appointment was over she was fully alert and ready to eat!


Here are a few pictures and one video from today. Now we're off to celebrate with a yummy steak dinner and spend the rest of the day just the three of us. So much to be thankful for today!

Being weighed! 12 pounds 12.5 ounces!

Happy girl kicking around!

Cuddles with Daddy!

How cute are the hospital gowns?

Right before I lost it!

Home from an eventful day and reading books!

Wednesday, November 14, 2012

Embry: Six Weeks and a Great Doctor's Appointment

Pediatric Neurologist

After our discouraging meeting with the pediatric neurosurgeon last month, we sought guidance from Dr. Brown, a psychiatrist and family friend.  Among other things, Dr. Brown suggested that we see a pediatric neurologist (neurosurgeons specialize in correcting disorders while neurologists specialize in diagnosing disorders).  So we made an appointment and met with a pediatric neurologist, Dr. Majeed, yesterday.

Our meeting with Dr. Majeed went much better than either of us expected.  He spent around an hour with us so I'll make this as brief and simple as possible. He reviewed the same MRI images as the neurosurgeon, but his assessment was much more positive.  The neurosurgeon had told us that Embry had cerebral atrophy (loss of brain volume).  Dr. Majeed told us that it didn’t look like she had cerebral atrophy. He also told us that it was too early to answer many of our questions and that the MRI on November 29th will give us a much better idea of what to expect.


The thing that he could conclusively tell us and the thing that stuck out the most to us is this: based on the MRI and Embry’s development so far, “there’s no reason to be anything but optimistic about her future.”  And that’s what we are!

Great Grandma Fanning's Visit

This past weekend my Grandma came to town for a long weekend and we had a great time! Embry has now met two of her great grandmas! What a lucky girl she is. Great Grandma Fanning got to be here for Embry's most alert weekend yet. My dad came in town Sunday to Monday to also be with us. It was so fun! We already miss her, but get to see her again when they come to Texas in February!



Waiting for Great Grandma Fanning at the airport


First hug!




Four generations







Jacob happened to capture this picture! Wasn't posed, but ended up being the cutest!


Out to dinner with proud papa!


Pass the baby!

Spent a lot of the days just staring at Embry!


Embry in her "Bushel and a Peck" onesie and her beautiful knit blanket from Grandma!


First "Submersion" Bath

During the weekend Jacob wanted to do Embry's first non-sponge bath. He read that you should try it and your baby might not like it, but to try every few days. Well Embry loved it! She was so relaxed and peaceful. Very cute!











Milestones

What we've heard from multiple doctors is that as long as Embry is hitting her "developmental milestones" we shouldn't worry. This weekend she definitely "mastered" a big one for a six week old. She has always liked to stare at this stuffed giraffe and this weekend while laying on her Papa's lap she "tracked" the giraffe from side to side countless times! Jacob has a chart that medical community uses for the developmental milestones and tracking an object 180 degrees like this is a three month milestone. At three months of age 50% of babies can do this. Woo Hoo, go Embry!



This next milestone is just a fun one. She's just starting to smile in response to things, and not super consistently, which makes it hard to capture. Today I caught her in a very happy, smiley mood!

Pictures

Here are some pictures of our little chunky girl from the past week.



















Friday, November 9, 2012

Embry: Five Weeks

What's New With Embry


*She is now sleeping in her own crib at night; started on her one month birthday. No more bassinet! I'm loving it...all her little noises were keeping me up. But I probably couldn't do it without our video monitor! (Even though she's one room away!)

*Speaking of sleep, I'm hoping her confusion of nights and days might be fixed. The past two nights she's slept until 1:30ish, then eaten, then slept again until after 7:00 am. I noticed a huge change yesterday of her being awake a ton more during the day. I hope this keeps up!

*I think I'm going to count her first real smile being October 31. I heard her starting to stir from a nap and went to go see her and when I started talking to her, she gave me the biggest grin! She still smiles a lot, but it seems pretty random!

*She seems huge to us! One day Jacob swore that she grew during the day and was bigger when he got home. Hah.

*Last Sunday I left her with Jacob for about an hour to run to the grocery store. It was the first time (since her time in the NICU) that I had been more than a few feet away from her. It was weird!

*She got to meet two of my best friends, Ali and Emily, last weekend and this weekend gets to meet her Great Grandma Fanning who is coming in from Chicago for a few days!

Here are a ton of pictures and videos from Embry's Week Five!!





Pinkalicious on a walk!

Halloween gift from some of our neighbors

Happy girl


Meeting my bff's! Ali and Emily

Embry's first fro-yo trip!


Weighing Embry

Pretty in pink

Playing outside


Love her gowns! She looks so long here!


Cuddling her monkey from the Harts

Embry on Election Day. Yes, I dressed her in red, white and blue!


Morning nap in her moses basket

Jacob insists on skin-to-skin with her each night. Sweet cuddles.

Cozy nap


I don't know why but I'm obsessed with yawning pics!

I tried to crop myself out, but I could resist her cute hands while nursing. So content.

Loving this outfit from Ruthie, although I think it's supposed to be pants! Capris for my tall girl!






House Drama

So last Thursday I heard a hissing coming from the closet where our water heater is. I Googled it and it said we may have a leak. So I told Jacob and didn't think much of it. About a half hour later I saw water leaking out of the electrical outlet on the wall of our water heater... Yikes. We then realized water was coming out of the corners of the wall... Lovely. We turned the heater off and called the contractor who did our kitchen 2 years ago. They came out the next day to fix it and realized we had a lot of water damage in the closet and under the house (we live in a pier and beam house) so he suggested filing an insurance claim. So we luckily got the new water heater in Saturday but have been dealing with water damage since. Right now we have walls torn down, de-humidifiers in the house, machines hooked up to the outside of the house to dry out the crawl space, etc. We've had workers in the house every single day for a week now. I mop twice a day and still can't keep the dust away. Also, the entrance to our crawl space is in Embry's room, and each day they have to crawl under there to check the water damage. Ugh!! Such a nightmare. Every time I want to break down about this I remind myself of all of the victims of Hurricane Sandy and I feel better. The news today is that hopefully all of the machines can go tomorrow and then we can start back with our contractor to get new walls put up. Not ideal situation with a 5 week old, but we'll survive!

Soaking wet walls had to come down
"The Dragon". This is the machine hooked up to the crawl space in our house. It runs on diesel fuel (LOUD) and is basically a huge heater to dry things out. It's so odd, our floors are warm, almost hot. And the whole house is steamy...our air conditioning is running like crazy. Fingers crossed this gets to be removed Saturday!
Embry's closet, more fans are down there.
What the house looks like currently. With the de-humidifier in the middle of our great room.