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Showing posts from September, 2011

Surgery Recap

Abby was great this morning during pre-op and won over the nurses and anesthesiologist right away.  After the anesthesiologist started the anesthesia through the ventilator, Abby promptly popped the circuit off in typical Abby fashion!  :)  I envisioned all of the doctors and nurses falling over unconscious and had to stifle a giggle.  That's Abby!  We held her hands after they put it back on again. She went to sleep no problem, and then I went back to the waiting room to...wait.  It was really crowded and at times I started feeling like I was going a bit stir crazy.  The Game Show Network was on TV really loud, one person in the waiting room kept calling out answers pretty obnoxiously, two people were working on Calculus together and discussing binomials and coefficients, and I feel like this is all just taking forever!  (In reality, it took a lot less time than we thought, but it seemed like forever!) We were able to see Abby at around 11:30 and she was so pitiful.  She was w

Praying Us Through

I will try my best to update tomorrow as soon as I'm able.  We check in @ 6:45 a.m. (now do you understand why we stayed at RMH the night before?!) and Abby's surgery is scheduled for 9 a.m..... hospital time!  JHH does have wifi, so I'm hoping to do a quick post just to let everybody know how she did.  In the meantime, there are some specific prayer requests we have...in no particular order: *  Abby's hearing test shows no hearing loss.  *  Our ENT will be able to get a good look at Abby's ears and be able to put tubes in.  (You might think that's a weird thing to want, but if he doesn't put them in, it's because her ear canals are too small...not a good thing.) *  The palate will be an easy, quick repair. *  We won't have any resistance to our request that residents not do any part of Abby's surgery.  (We know that they need to learn....just not on Abby.)  We've spoken to our surgeon already and feel confident that he will honor ou

Save Those Pop Tops!

Remember to save those pop tops for the Ronald McDonald House!  If you get them to us, we'll take them up whenever we go.  If you aren't local, donate them to your closest RMH.  The RMH of Baltimore uses the money they get from the pop tops to fuel the shuttle that takes families to and from the area hospitals.  It's a huge blessing to the families (especially when you have to pay to park every time and that can get very expensive).  Check out this video and save those tops!

Baby Food 101

With Caleb, I pretty much made all of his baby food.  I found it to be a lot cheaper, but wasn't anti-store brands by any means.  It was just more cost-effective for us, and I liked doing it.  I would make a big batch at once and fill ice cube trays.  Once the food was frozen, I would pop them out and put them in a container with a label on it.  Well, that's just not going to work so well with Abby.  See, she only eats 1 teaspoon 4x a day.  That's 5 mls....not very much!!  One regular ice cube of frozen food would last her about 2 weeks. You can't thaw and refreeze food....which means we would be wasting a lot of food.  So, this time around it is more cost-effective for us to buy food.  When I open a can, I put it into this cute little ice cube tray I found that is actually for cocktail drinks.  I'm repurposing it. :)  Each little cube is just about 2 1/2 mls, so we give Abby 2 at a time. This makes 60 cubes, which is about 30 feeds for Abby.  One container of f

Sneaky

I have a smart, but rather sneaky, girl on my hands!!  Ever since she learned how to say "more," Abby has gotten SO lazy!  Instead of just reaching down and picking up the toy that is right by her knee, she'll sign "more" over and over again until someone takes pity on her!  That someone is not me! I am convinced that she knows exactly what she is doing! In other news, Abby has now learned what "stop" means.  She'll shake her bells or other noisy toy while I sign "shake," and stop when I sign "stop."  It's very consistent, too!  I've been very impressed with her understanding of signing.  She's a smart (sneaky) cookie!

A New Kind of Alphabet Book: D

D is for Drain Sponge and Developmental Delays Drain sponges are often used around the trach and the g-tube to soak up the excess moisture and gunk.  They are split so that they fit around it and stay put, which is rather convenient.  We never really used them around the trach because we didn't need to, but we did keep them around Abby's g-tube for a while until our GI said to just let the site breathe.  There's some argument as to the advantages and disadvantages of the drain sponges, but we don't use them too much. Unfortunately, developmental delays are very common when you have a young child with a trach--especially if he or she is vented.  The inconvenience of the tubing makes it difficult to do tummy time, which is so important during those early months!  For Abby, she was also kept on her back for the majority of the first three months of her life while she was hospitalized, so that didn't help things either.   Speech therapy is also extremely importa

A Lesson Learned

My mom took a salad for lunch last week and brought her salad dressing in a tiny Tupperware container.  She's an avid L &L user, but figured that for this small amount of salad dressing, the Tupperware would be better than a bigger round L & L container. Welp, the salad dressing spilled allllll over her lunch bag and made a big ole mess.  My response? You shoulda used Lock & Lock! She agreed!

Medical Update

I haven't posted recently on how Abby is doing medically.  I'll start with the easy stuff and then talk about her upcoming surgery! *  She is completely off of the vent while awake and only has it on during her two naps and bedtime.  She is loving the freedom and so are we!  We'll head back to the pulminologist in November after Abby has healed from her surgery.  Hopefully, we will begin weaning off of the vent completely!!  *  We're nearing the end of her time wearing a helmet.  The growth seems to be slowing, so she may only have it a few more weeks.  Her head definitely looks a lot better, and I'd be fine if it didn't get any more round than it is now. *  Abby is still... ahem... a bit chunky.  She gained another pound this month, despite cutting back her calories.  I convinced her GI doctor to cut it back a little more drastically this time because her weight is really getting in the way of her development.  She's now just taking a few more calorie

Another Lunch Shot

Right before school started, I made a batch of corn bread muffins and put cut-up pieces of turkey dogs in each one.  They're basically easier-to-eat corn dogs, and they are awesome for Caleb's lunches!  I buy the corn bread mix from Trader Joe's (delicious, I might add!!!...the corn bread, not the corn dogs) and froze the muffins after I made them so that I could just pull out one at a time.  This is the 3-divided container I talked about before.  It's my favorite for Caleb's lunch because it holds a lot and nothing gets mixed up with the other sections.  That way, you can have something like strawberries and not have to worry about the juice getting on the cheese.  For this particular lunch, Caleb has veggie straws, a couple of cheese slices, and dried pineapple.  It's a little more colorful than it looks here, because the veggie straws are spinach and tomato.  For some reason, they all show up yellowish...making for a very yellow meal.  :) There are groove

11 Months

Happy 11 months, Abby!  That is so hard to believe.  I can't get over how much she has changed over the summer.  She's a different girl. Here are the highlights of what Abby is doing: *  She can sit completely on her own and has been for quite some time. *  If there is a table or something for her to hold onto, Abby can stand without us holding her.  *  Just the other day, she began signing "more" and is acting as if she's been doing it for months.  I have yet to get a picture or video of it because she's stubborn like her momma. *  Abby has started leaning and reaching for Matt, Caleb, and me.  :) *  She really likes her babies and gets a huge smile when we hand one to her.  She is learning how to rock the baby, not smack the baby. *  We are pretty much signing everything we can to her so that she is being exposed to lots of different signs.  There's been a lot of sign language studying around here! The next one we are working on getting

Wrasslin'

Caleb and Abby love to wrestle with Daddy! Why, yes, Caleb is wearing mismatched pajamas.  It's all about fostering a little independence, isn't it? Caleb's favorite move is the Head-Sit Manuever.  I think it's self-explanatory.

A New Kind of Alphabet Book: C

C is for C atheter, C lorox Wipes, and C ranial Band A catheter is a common medical term, but the specific one I'm talking about is the suction catheter.  This is used to suck out the gunk that builds up in a trach that people without lung problems can just cough up on their own.  Suction catheters are individually wrapped in sterile packaging, only to be touched with a clean gloved hand (and minimally, even then!)  The catheter is connected to the suction tubing and the suction machine is turned on.  The size of the trach determines how far you go down with the suction catheter.  Going down too far could result in bleeding or permanent trauma to the trachea.  Don't do it!!  Because Abby is so little, we only go down 4 cm when we suction.  As you bring the catheter back up, you create suction by putting your thumb over the little hole and suck up the gunk.  (Lovely, isn't it?)  I should buy stock in Clorox wipes , because we go through a whole lot around here.  Th

Meatball Subs

In my ever-present quest to get my family to eat healthier, I made meatball subs for dinner the other night. No, seriously!  They were healthy!!! You see, they were meat less ball subs!  I know they sound gross.  But they really weren't! I bought a package of meatless balls at Giant (which has a delightful vegetarian section, I might add!) and threw them in my crock pot.  They're meat and soy free, which means they're basically just balled up vegetables.  I try to avoid soy products when possible because of all of the estrogen hype (soy is in everything these days, but I try not to eat it if I don't have to).  I added about a can of spaghetti sauce (I always buy the kind that has full servings of veggies in it for extra healthy goodness...and to annoy my husband) and a can of diced tomatoes.  (I didn't take any pictures of it while it was in the crock pot.  So sorry!) I turned the crock pot on high and left it for about 3 1/2 hours, stirring it a few times a

A New Kind of Alphabet Book: B

B is for B ronchoscopy and B reath Rate A bronchoscopy (bron-KOS-ko-pee) is a procedure used to look inside the lungs' airways. The airways carry air from the trachea, or windpipe, to the lungs.  During the procedure, the doctor passes a thin, flexible tube called a bronchoscope through the person's nose (or sometimes their mouth), down their throat, and into their airways. The bronchoscope has a light and small camera that allow the doctor to see the windpipe and airways and take pictures.  Abby had a bronchoscopy done when he had her trach placed, and will be having another one while under anesthesia for her cleft palate surgery so that our ENT can see how her airway is growing.  Bronchoscopies are pretty typical for trach kids. The breath rate refers to the number of breaths a person takes in a minute.  Below is a list of the average breath rates for different age groups. Average Respiratory Rates By Age: Newborns: 30-40 breaths per minute Less Than 1 Year: 30

Why You Should Be a Lock and Lock Supporter

Being a Lock & Lock Supporter definitely has its advantages!  If you have a blog and have a love for L & L, you should look into it.  Here's why: 1.  I LOVE getting to test out products that I might not otherwise know about.  2.  I get notified about the sales and good deals first. 3.  I get to read the blogs of other supporters and learn about their interests. 4.  Others come to my blog to see the L &L products and are able to hear our story. 5.  Did I mention all of the free stuff???? Exibit A: This salad bowl is awesome!  It's really big and has 6 locks instead of the typical 4, so the lid stays on really well.  I can't wait to take this to my next pot luck or cook-out with fruit, pasta, salad, etc.  The handle is the best part!  I was also pleasantly surprised at the price.  This would be a really nice wedding shower gift for someone.   Exibit B:  I have seen these airless containers advertised, but didn't have any myself.  You are supposed to be ab

One Year Ago Today

One year ago today , I sat in church trying to decide if my contractions were real or not. One year ago today , the doctors tried multiple medicines to stop my contractions...with no success. One year ago today , I took my first helicopter ride...and I never wanted to do it again!  (I did, just 4 months later !) One year ago today , our family began the first day of our new normal. One year ago today, life as we knew it changed forever.  Who knew that as we walked into the emergency room at CMH, that I would be away from my family for the next 5 weeks trying to keep my daughter from being born too early.  Who knew that the 12 weeks after that would be spent advocating for my newborn daughter and watching her fight for her life.  Who knew that we would spend hours learning how to take care of her.    Who knew that Abby would bring so much joy and love to our family. I'd say it's been a pretty eventful and miraculous year!

Opportunity

Update:  Because of a scheduling conflict with the person who is organizing our NICU talk, the date on this meeting has changed.  It's still going to happen, but probably not until December.  :) --------------------------------- Since we've started on this journey, God has given us opportunities we never even considered.  It's amazing how He can take something that looks so bleak and hopeless and turn it into something beautiful and encouraging.  I'm constantly in awe of the turns my life has taken. Matt and I have been given an amazing opportunity to speak to the NICU staff at UMMC in the beginning of November.  We'll be sharing our experience and discussing how they can continue to support families in complicated or bleak situations.  We're honored to be asked and are a bit nervous--after all, a teacher and a youth pastor will be speaking to a room full of doctors, nurses, and other medical professionals!  What do we have to offer them?! What we really

Lock and Lock Lunch

Somebody asked me if I'd been using Lock & Lock for Caleb's lunch.  Uh, duh!  :) For this particular lunch, he had mozzarella bits, strawberries, veggie straws, yogurt, and water.  Everything but the yogurt was in a L & L container.  The two little round ones are very handy and fit well in his lunch box!  When he has a sandwich, I use a little larger rectangular than the one with the veggie straws in it.  I also use a lot of the divided containers (in fact, they are what I usually use!)  I will take pictures of other lunches to show the different varieties of containers I use.  Caleb can open these just fine and has been doing it for about a year, so they are pretty easy for little hands. They all fit perfectly inside of his metal Orioles lunch box, which he proudly carries every day.  :) Side note:  I like to think that all of these reusable containers I pack lunches with somehow combat the humongous carbon footprint we are leaving with all of the medical trash we a

A Leakproof Water Bottle

I am super-excited about the water bottle I got for being a Lock & Lock supporter.  It's green, has liquid measurements on the side, has a nifty little mouthpiece that comes out separately, and it's leakproof!!!!!   Hooray!!!  I have been close to chucking my water bottles recently because both of the ones I have been using have started leaking.  I spilled iced tea allllll down the front of my white shirt at about 8:30 a.m. on a work day.  Yeah, that made for a lovely little tie-dyed outfit, now didn't it?! I tested the new guy out tonight and it surely is leak-proof!  Yippee!  They also have it in blue and burnt orange, in case you wanted a different color.  I kind of like the green.

A New Kind of Alphabet Book: A

A is for A pnea monitor, A mbu bag, and A lcohol prep pads An apnea monitor is used to make sure the child is breathing properly.  It will detect shallow or the absence of breaths and alarm after a determined amount of time without breath movement.  The monitor leads are usually held in place either with a band that velcros around the child or stickers that stay on the child's chest.  Children who have a trach usually need to be monitored for apnea while they are sleeping.  Sometimes, a sleep study is done in a hospital setting to make sure the child isn't having any apnea before the doctor discontinues using the home monitor.  We're hoping to get Abby in for a sleep study fairly soon so that she can get rid of the apnea monitor.  While it's a great machine in theory, it is hard to keep the band tight around her.  The leads get loose and the machine beeps louder than you could ever imagine.  Plus, the added "accessories" make her hot while she is sleeping.

A New Kind of Alphabet Book

In Caleb's preschool class, each week is a different letter of the alphabet.  They start at A, go all the way to Z, and then start over again.  Each kid is supposed to bring in two items a week (one for each day of class) that start with the letter of the week. As we were discussing what Caleb should bring for A, I jokingly said he should take in the apnea monitor.  Matt and I then joked that we could find medical equipment for every letter of the alphabet and really give those kids in his class an education! Out of that sprung an idea that I really would create an alphabet book blog series!  A lot of it is related to trachs and vents, but some are more on the special needs side of things.  I usually have several words for each letter, and my plan is to write a more detailed description beneath each word.  Who knows, maybe this will turn into a real book someday!  Regardless, I think it will be fun and a good way to teach others some of the medical terms that have become part

At the End of Your Rope?

Do you remember back in April when Matt shared a bit about our family's journey during his sermon?  Our church has joined http://www.vimeo.com/  and you're now able to view it right here! At the End of Your Rope? from Grace Brethren Church on Vimeo . (I tried to imbed it, but that is apparently a Vimeo Plus feature and can't be done with this version of Vimeo.  The link above takes you to the sermon though.)

I'm Lovin'...

...hearing people's own stories of learning to choose joy in tough situations ...beautiful transparency in a friend's September 11th blog ...listening to Caleb greet Abby with a sweet, "Why, helloooooo there, little lady!" every morning when she wakes up ...the color of Abby's room ...feeling the cool, crisp September mornings when I walk out the door ...hearing some of the happy endings of September 11th ...the movie Grown Ups (very funny, and not overly vulgar!) What are you lovin'?

A Different Kind of Friday

Most of our Friday nights are spent at the farmer's market, but it was First Free Friday at a local museum, so we took advantage of the free-ness of it all and visited.  Caleb was much more interested in some of the fossils this time around, and he enjoyed learning about the osprey.  He was even more excited when we saw a real osprey in its nest while we were out on the boat a little later! Abby did her typical playing and being cute thing that she's so good at. Caleb was really nervous around the jellyfish, because he was certain they were going to sting him through the glass. Taking a ride on the boat out on the Bay. Daddy kisses!! We even found some friends while we were there and hung out with them part of the night. Have I mentioned how much I'm going to miss the less-germy days of summer when it's back to the quarantine?

10 Years

We will never forget.

Things I'm Thinking About...

*  Abby's first birthday and all it stands for *  September 11th and the harsh memories it will bring back for so many people on this 10th anniversary *  The opportunities we've been given recently to share publically Abby's story and the miracles performed in her life (more on that to come!) *  Sadness for friends who have had major damage to their houses as a result of the hurricane and flooding *  The fact that this is Caleb's last year "home" before he starts kindergarten.  UGH! *  Nursing drama, as usual... *  How much our lives have changed in the last year There was a time when the most important thing on my brain was the outfit I would wear to the school dance....

They Love Each Other!

The Blue Angels

My parents were at "their" (as Caleb calls it!) campground over Labor Day, and it happened to be very close to where the Blue Angels were performing.  We all went there for crabs and the show.  It was pretty cool to watch them whirling around in the sky...but it's nervewracking how close they are to each other! Here, they flew up really high and dropped straight down.  My stomach dropped just watching it. This guy flew really low over our heads! Every time one peels off from the group, it's in memory of all of the fallen soldiers. Caleb wasn't a fan of the noise, so he wore his noise-canceling headphones the whole time.  It really wasn't that loud, but it made him feel better. Abby, on the other hand, slept through the whole show on Nina and Paw Paw's bed!  Nothing wakes this girl up--not even the Blue Angels!

Will Somebody Please Stop Feeding This Baby Milkshakes?!

Just kidding!  Abby has worked hard for these fat rolls...even if she does now weigh 21 pounds, 4 ounces! Doncha just love the Pebbles bow?  Matt did it. :)

Happy Birthday, Sara!

Happy birthday to my beautiful niece and Caleb's best friend.  He is sure missing you now that you're at school!  This cutey-patooty is all girl who loves to get her nails done, change her outfits, and do her hair.  Just don't do her hair wrong, or Sara's day will be ruined! (Voice of experience...)  Sara is a fantastic reader who loves school and is really enjoying kindergarten this year.  We know she'll do great! Sara loves her babies, and especially the "real life" baby sister she has.  She's a fabulous big sister!  She's also a great protector for Caleb and is always looking out for him.  Happy 6th birthday, Sara Bear!