Lemme do this before I forget:

March 30, 2010

March 31, 2010

Now that that's out of the way, I have pretty good news from Emma's sleep doctor...but before I tell you, let me give you a word of caution: Emma's sleep apnea isn't FIXED.  We won't know IF it's fixed for at least another 9 to 12 months.  But here's the good news: Dr. Gault is really pleased with how Emma is doing on the BiPAP.  The machine has a modem that can be used to download results directly to the doctor's office and to our insurance company (they want to make sure we're actually using it since they're paying for it).  Dr. Gault was amazed at how diligent we have been this early in the game.  I guess most parents get frustrated and take the darn thing off.  We have done that, but only after we reached our nightly time goal.  Dr. Gault was also very pleased with how well Emma breathed on the machine.  When she does breathe in synch with the machine, the machine is totally doing its job.  Apparently, every night is getting better in terms of how Emma "gives in" to the rhythm of the machine.  On top of that, she slept for 6 hours with the mask on for two nights in a row and 8 HOURS LAST NIGHT!  Let's be clear: one of those nights was pure hell, but the other two weren't that bad.

After Dr. Gault's appointment, we took Emma for her one-year pictures.  Even though she had not had a morning nap (which she always has, even if it's only 20 minutes), she was GREAT.  Makes me wonder how much of that can be attributed to the better quality sleep...Dr. Gault told me to be on the lookout today for any improvements in behavior or lethargy.  After 2:00, she was very tired and fought sleep for a very, very long time.  But this evening, we went to Chic-fil-a for a Fluor-sponsored American Heart Association fundraiser, and Emma was very lively later than she usually is.  We hung out with our friends Zack and Kristen, who very sweetly loved on Emma.  All in all, a very good day.

Newest Addition

You've probably noticed that I change the theme of my blog, sometimes just whenever I feel like it, but usually to correspond with a holiday.  Well, the latest change to the blog isn't the theme - it's the ads that you see on the left sidebar.  I haven't sold out.  I haven't.  I learned that allowing these ads to appear on my blog can actually make me a tiny bit of money, based on how many clicks originate from my blog.  Any money that I make from those ads will go into a special fund for Emma's medical expenses.  So if you see something that interests you over there, go ahead and click it!  These ads are processed through Google and Blogspot, so they won't be trojans or worms or anything that will harm your computer.

Here are the pictures from Emma's first big tub bath that I promised to post a few days ago (side note: check out the Michelin man arms):

Congratulations to our friends Phil and Emily Watson!  Their first child/baby girl, Anna Claire, was born tonight at 6:25, weighing 8 lb, 9 oz and 21 inches long (Phil and Emily - don't hate me if I didn't get the measurements exactly right, but I think that's accurate.). 

One more shout out - happy birthday to my dear friend Magee.  Words can't express how much Magee means to me, and today she caught up with me - 30.  Hopefully 30 won't catch up with her like it has me!

On this date last year - March 29, 2010

I promise I'll post something more interesting eventually...

but right now, the only interesting and new thing with Emma is the crying and throwing up on things that have to be cleaned immediately while wearing her sleep mask.  Late at night.  So that should explain why I pretty much only have the energy to blog about last year:

March 28, 2010

Reminiscing

One year ago today!

Another Big Girl Milestone

Today Emma took a bath in the big bathtub in a precious little bath seat we borrowed from the Keeleys (thanks, boys!).  I think she enjoyed it.  I know it probably sounds like we're a little bit late on doing the big bathtub baths, but you have to remember two things: Emma doesn't sit up that great by herself, and Russell and I only give her baths on the weekends because my mom gives them to her during the week.  I have pictures, but to be honest with you, I'm exhausted...I'll post them soon.

Here are some memories from last year:

March 25, 2010

March 26, 2010

More screaming

I have a feeling that for quite a while, I will be posting on the blog while Russell holds a screaming Emma with her BiPAP mask on.  I hate it.  It's awful.  So I'll blog to occupy my time.  And write thank-you notes.

Here's a look back at March 24, 2010.

One thing I love about that old blog entry is that the picture of Emma looks very, very similar to how she looks now when she's sleeping.

PS - In the middle of writing this brief blog, Emma got so worked up screaming and crying that she burped and threw up on herself, Russell, and our sheets.  At 10:00 pm.  No one wants to change their sheets and start a load of clothes at 10:00 at night.

My Hero

Last May, Emma came home for one week...then she went back to the hospital.  It was then that we learned how serious and rare the side effects of her birth defect are.  Very scary stuff.  In fact, most of you don't even know all the facts, all the realities, all the decisions with which we were faced.  For some of that time, Russell couldn't deal with it, and I was there to be the strong one.  And, conversely, for some of that time, I couldn't deal with it, and he was there to be the strong one.  There were times when we couldn't even be in the room with Emma, and we had to rely on each other or another member of our family to support our little girl.  I'm not ashamed of not being strong enough.  If I was the only living family member who loved Emma, I would gladly (and somehow) find the strength to be there through it all.  But God blessed us with an amazing family...double digits worth of people who will be strong when we can't.  They are God's angels in those moments.

Last night and tonight, Russell has been that angel.  Emma hates her BiPAP mask.  The air is frightening, the mask is uncomfortable, and the struggle to breathe normally is agonizing.  But she has to wear it and get used to it sometime.  We have been told to start out gradually.  Build her up.  Sounds easier than it is.  Emma had not actually gone to sleep wearing the mask with the air blowing and everything; we had only put it on her for shorter periods of time while she was awake, with her spending the majority of that time screaming.  But when I got home from the School Board meeting last night, I found Emma fast asleep in Russell's lap wearing the mask.  He tells me she fought and cried and screamed, and he wondered why he decided to try it out by himself.  Tonight we tried it again, and it turns out that I can't stand it.  I absolutely cannot handle my baby crying because I know what she's crying about - she's uncomfortable, confused, and can't breathe like she wants to.  I have felt the air blowing through that mask, and it is NOT pleasant.  But Russell came to my rescue.  He doesn't like it, but he can deal with all this.  He is SO the strong one through this.  Emma even reached out to me for help.  She NEVER reaches for anyone when Daddy is holding her.  Oh, so heartbreaking.  As I type this, Emma has now been on the machine for an hour and 35 minutes.  She's been asleep for an hour.  Russell has even volunteered to sleep on the couch or stay there as long as he needs to, just to help her learn to sleep with the BiPAP.  I love him.

In other news, Emma saw Dr. Troup yesterday.  How do I explain all this info....basically, Emma's sleep and swallowing issues are caused by two things.  The accountant in me needs to separate these two and explain Dr. Troup's plans:
(1) Emma's brain stem could be disorganized.
              Medically, there is nothing they can do to correct this.  Doctors have found in recent years that kids are "growing out of" this.  Specifically, there are a few kids that one of Dr. Troup's neurosurgeon friends treats who are much worse off than Emma, and they began growing out of it in early adolescence.  Up until a couple years ago, it was all bad news: your child can't breathe on their own, and he/she will be on a tracheostomy (sp?) and feeding tube forever.  But now I have read about kids getting their trachs out when they're 3, and Emma's not nearly that bad off because she doesn't have vocal chord paralysis...most of these other kids do.  That's what makes this really hard: I have never heard of another child with Emma's symptoms.  She doesn't have vocal chord paralysis and her brain DOES tell her to breathe...but she still chokes and has sleep apnea.  Most kids with breathing/swallowing problems are pretty severe - asleep AND awake, much worse than Emma.

(2) Emma's brain stem is compressed.
                Many times, a compressed brain stem causes problems with breathing and swallowing.  Based on Emma's MRI's from last May, Dr. Troup doesn't think that Emma's sleep apnea issues are caused by the compression, but there's a chance the swallowing troubles could be caused by the compressed brain stem.

So here are these two potential causes of Emma's sleep/breathing and swallowing problems, and there's no way of knowing which it is.  The only way to determine if it's the compression is to do the decompression surgery, and THIS.  IS.  MAJOR.  That surgery is literally brain surgery.  The recovery is difficult, and it can actually set kids back just by the nature of the surgery.  Dr. Troup's take right at the moment is, "She's not getting worse, and I don't want to do this major surgery just to see if MAYBE that's the cause of what's going on."  Ideally, the older Emma is when she has that surgery, the better she will recover.  Emma is going to have an MRI and a spinal fluid flow test in 6 to 8 weeks, which will help him make a decision about what to do at that point.  So we'll go back to see Dr. Troup in another 2 to 3 months, and we'll see what he says then.  In the meantime, we're going to keep cruising and trying to retrain Emma's brain to breathe well when she sleeps.  We're also hoping that she can start doing VitalStim therapy twice a week at the hospital, but there's some hang-up with the electrodes.  This is so stupid.  The hospital has the machine to do this therapy, but the actual electrodes are the problem.  VitalStim therapy helps reprogram the brain and throat muscles to swallow properly.  We even volunteered to pay for the electrodes ourselves, but it's not that easy.

So all that information...and I don't even know what to pray for.  Can I simply ask you to just pray?  For what, I don't know...God's guidance and healing of our baby is all we know to pray for.  All my life I have had very specific things for which to pray, and now I have no specifics whatsoever.  Wow, will that teach you to trust in the Lord.  Hey, God, I have no idea what's going on right now, and no one does, so....will you....um....heal Emma, I guess?

Ok, I've bored you all to tears.  If you've hung on this long, maybe you'll hang on a little longer to see what was happening with Sweet Baby Emma this time last year:

March 22, 2010

March 23, 2010

(These particular two days talk a lot about the problems we had in the NICU...even though we face different problems now, it IS kind of nice to look back and say, ahhh, we don't have to deal with THAT anymore.)

Like mother, like daughter

When I was a little girl, I hated to get dirty.  I despised dirt outside and usually ran into the house to have my hands washed.  This probably doesn't surprise those of you who know me well.  I can handle dirt well now, in its place.  I have no problem getting dirty outside, but don't bring it inside.  I will wipe fresh paint all over my paint clothes, but the paint must be contained.  Poop in the tub?  Not my favorite, but as long as the poop and poopy water stays in the tub, I can deal.  At Emma's first little birthday party, she proved to be her mother's child.  She really wasn't wild about putting her hands in her smash cake. 

Saturday night we had a mini-party with my dad.  Granddad couldn't come to Emma's first birthday party on Sunday because it ended up being at the exact same time as my grandmother's funeral.  As much as the rest of us wanted to go to the funeral and visitation to honor my grandmother, I think it's very symbolic and profound to simultaneously celebrate the beginning of one life in our family while honoring the passing of another.  Anyway, on Saturday night, Emma had another little cake of her own.  It also was iffy.

My sister was home for Emma's birthday, so we had a delightful evening on my parents' deck, eating and enjoying the weather and each other.  Emma even got to open her birthday present from John and Mama Jan.

Here are some highlights from Emma's party, including the food and decorations that my sister made.  You just wouldn't believe the creativity that flows from her fingertips, and in so many genres: cooking and baking, sketching and painting, creative writing, hair and makeup, digital artistry, anonymous crafting...at one point in time, she was even a great pianist, according to my mother.  Heck, she might still be.  When she's home, there aren't enough hours in the day to fully explore the realm of her creativity.  Oh, and she's wicked smart.  (Can you tell I admire her?)

 

Loving on Uncle C:

If you're wondering what Russell's brother, Josh, looked like as a little boy, here he is...in the form of our nephew, Mason

Here are last year's posts from:
March 19, 2010
March 20, 2010
March 21, 2010
(Sorry, this weekend I didn't do a good job with updating the current blog with the prior year memories.)

One hundred years of strength, courage, and love

My father's mother, Annie Proffitt Lemmons, passed away this morning around 7 am.  She was a wonderfully strong woman, having worked all her life and raising 5 kids by herself.  My grandfather passed away when my dad was only 2 years old, so she worked very hard to support her family.  And I'm pretty sure my dad and his brother were a handful.  She also survived the death of 8 brothers and sisters, as well as the death of her son, Mac, 30 years ago.  Memaw turned 100 on July 1, 2010.  She had 4 surviving children, 9 grandchildren (of which I am the youngest), 14 great-grandchildren, and I'm a little fuzzy on the great-great-grandchildren.  Clearly, the family has gotten larger and larger...I'm pretty sure she had either 2 or 3 great-great-grands.

We were so blessed to be able to bring Emma to meet Memaw this past summer.  Memaw has had dementia for over a decade, so she hasn't known who any of us were for quite a while.  However, she still holds a special place in our hearts.  When we brought Emma to see her, Memaw of course didn't know who we were or anything like that, but when she was on her way back up to her room (escorted by my aunt on my OTHER side of the family), she all of a sudden said, "Baby."  And then went back to kind of mumbling.  So I like to think that she felt a connection to that baby.

If you want to know how to live for 100 years, here are the things that I remember Memaw doing religiously:
(1) Being involved in her church
(2) Watching Lawrence Welk
(3) Eating half a grapefruit every day (and I mean EVERY DAY) for breakfast
(4) Snoring like a foghorn

Try these four things for a long life with lots of people to love you.

My sister came home for Emma's birthday yesterday, and she and Emma had a great day together today.  Emma is very drawn to Anissa and flashed all her cutie patootie smiles.  Emma's becoming a pro at holding her hands up in the air, straight as a board, when you say, "Touchdown!"  She's also learning to do that at a certain part of a poem I'm teaching her.  She sounded a little snotty today, so I hope she doesn't wake up with a cold.

Here's the post from March 18, 2010. 

Let's be clear

We are still celebratimg Emma's birthday.  But since today isn't actually her birthday, I will allow some discussion of her medical developments.

Yesterday Dr. Gault, Emma's pediatric sleep specialist, called and gave me his take on the results of the hellacious sleep study from Monday night.  Thank goodness he felt more positive than we did when we left Tuesday morning; if he had given me more bad news, I might would have just hurled the phone out the window.  Turns out that most kids are mouth breathers, but over time (with a mask), they can become nose breathers.  He wouldn't even hear of a discussion about a chin strap for at least another month.  They did get a little bit of data that showed that the machine helped Emma.  He had settings for us and told us that we would be contacted for Emma's very own machine.  The results, as skimpy as they were, were no better and no worse than he expected.  He fully expected Emma to not cooperate because she's a "peanut" (his favorite term for babies). Those are the mechanics.

Here's the emotional stuff: he told me he's worried about Emma.  Not any more worried than he already was, but just concerned.  He also said that Dr. Elidemir was worried (they had some sort of discussion about Emma the other day).  Like I said, not any more worried than they already were, but worried because they care about her.  Dr. Elidemir sees Emma monthly for Synagis shots to help protect her from RSV, and he has really enjoyed seeing her this winter.  It's so comforting to know that they care so much about our baby girl personally, not just professionally.

So this afternoon, a nurse from the home health care company came by and showed us how to use Emma's BiPAP machine.  It's different from a CPAP because a CPAP pushes air continuously at the same pressure.  A bi-level machine like Emma's pushes air with two pressures, one for the "inhale" and one to encourage her to exhale.  She exhales on her own, so she doesn't need a lot of help clearing the CO2 from her lungs.  Another encouraging bit of information today is that the nurse suggested that we just spend a week putting the mask on Emma without any air at all, just to help her get used to it.  She also suggested that we spend the next week just blowing air in her face from the tube to ger her used to having air blowing on her face.  She encouraged us to let the mask become her toy...then it won't seem like such a foreign object when she has to wear it, and she won't associate it negatively.  She did great wearing the mask for a little while today (after she got over 3 minutes of screaming), and she got a kick out of the air-blowing tube.

I still feel like I've been kicked in the gut over this apnea thing, but I've figured out how I have coped with all of the awful things that have happened to Emma in the last year.  Anytime I've gotten bad news, I get upset.  I mourn, I grieve.  And then I reach a point (hopefully sooner rather than later) that God blesses me with the ability to focus on today and tomorrow rather than the what-ifs of three months or six months down the road.  It's almost like I can shut off any of my thoughts about the future.  I know that sounds horribly unhealthy, but believe me, I could work myself into a full-blown panic attack at any given moment if I let my imagination run wild.  I know the long-term what-ifs; I just don't have to think about them every day.  The best we can do is worry about today, and that's exactly what Jesus expects of us because He is in charge of our future.  Hallelujah.

Ok, so here are some rather depressing pictures from the sleep study Monday night.  We didn't get to stay in the "plush" lab that I stayed in last time, and I just felt gross.  The floor was even sticky.  They shoved the pediatric sleep lab into 3 hospital rooms at the end of the hall of an abandoned wing of the hospital.  Yep, abandoned.  It was kinda creepy walking in; I felt like I was in a weird horror movie with the words to Hotel California in the back of my head (you can check out any time you like, but you can never leave....).  I'm sure they will renovate the wing at some point, but ick! in the meantime.

Last year's blog post:
Blog post from March 17, 2010

HAPPY BIRTHDAY!

Today is Emma's first birthday and what an amazing day it has been.  I am so, so sad that it's over.  I'm not really sure why, but I'm just very sad.  But we will continue to celebrate Emma's life - a day is just a day.

I'm not going to post pictures from the sleep study Monday night, and I'm not even going to tell you about the relatively positive phone call I received from Dr. Gault today (I have to keep you coming back for more).  Today was not about the doctors.  It was about Emma.

Emma had a great day today. I'm still exhausted from lack of sleep Monday night, so I'll keep the words short and pictures sweet.  We took Emma out to lunch and also out to dinner.  She loves cupcakes. 

First pics of Emma on her first birthday:

Birthday lunch with the girls:

(Look at that ringlet curl on the left side of her head.  Where does this curl come from??)

Get me to the food!!

Mmmmm...those cupcakes sure look good...

Now, Emma, it's not nice to point and laugh at Nan. 

Unrelated to her birthday, Emma's latest trick is for you to say touchdown, and she does this:

Ok, back to the birthday shots.  Dinner with Aunt Ally, Mason, Mommy, Daddy, and Nan:

Trying to take pictures with a 3- and 1-year-old...what do you expect?

All....most....there....can't....quite.....reach....

Still.....so.....close......

JACKPOT!

Emma's cousin, Mason, is just the sweetest boy, and as you can see, he really loves Baby Emma.  Not Emma, mind you.  BABY Emma.  That's her name.  So Mason was telling us tonight a story about firemen, and I asked if Baby Emma could be a fireman one day...or firewoman.  Mason's response was that she would be a Fire Baby Emma.  "A Fire Baby Emma?" I asked.  "Yes," Mason said.  "A Fire Baby Emma."  He was certain this was an occupation.

All in all, a great day for my precious girl.  Thank you all for the happy birthday wishes and prayers.

Here's the blog entry from one year ago:

http://babyemmayoung.blogspot.com/2010/03/baby-emma-is-here.html