Thursday, September 29, 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 writhing in pain and was just miserable.  They had her on a pain pump that we could click if it got really bad.  For a while, she would sleep for about 20 minutes and then need more.  They decided to give her some Tylenol and that seemed to really help.  She slept for about 2 hours and woke up more settled. 

The IV pump started acting funny, so the nurse tried to flush Abby's IV.  Sure enough, it had blown.  She spent the next hour or so working on getting Abby cleared to do all oral pain meds, which meant Abby had no pain meds during that time.  It was rough!  Once they sent the orders and they gave her a new Oxycodon and Tylenol cocktail, she felt much better.  :)

So....onto the results of the surgery:

*  The palate was an "easy" repair and he said it went very smoothly.  She even has a uvula now!  (It's a useless body part, but she has one!)

*  Our ENT was able to get tubes in her ears after a few tries--hooray!!  He found that there was fluid in both ears, but especially the right one--which was infected.  No one ever knew because we could never see her ear drum, she doesn't get fevers (ever), and she hasn't been rubbing it excessively.  Who knows how long she has had it, poor thing! 

*  The ABR hearing test showed that Abby's left ear is perfectly fine.  The right ear was a little off, but he thinks it's because of all the fluid.  He wants to have her retested (with a regular test, not an ABR) in 6 months to make sure.

*  The ENT took a look at Abby's airway and said it looks fine, but it's still small.  He doesn't think she will be having the jaw distraction.  He did change the length of her trach so that now she has a pediatric trach, as opposed to the neonatal size she had.

All of the doctors assured us that residents would not be doing Abby's surgery, and we especially liked the anesthesiologist she had.  She called Abby by name, and even told everyone in the OR that she goes by Abby.  She talked to her the whole time and was very sweet to me as well.  We really appreciated how good she was. 

I was surprisingly calm through the whole thing and didn't even cry!  I felt very at ease with our surgeons and anesthesiologist, which helped.  All of your praying did too!  :)

We went back to RMH for a super-fast dinner, grabbed my stuff, and then Matt dropped me back off here for the night.  Abby slept the entire time we were gone and is still sleeping.  I hope she still sleeps through the night after all the snoozing she's done!  I think  she will--she's had a rough day. :(

Thanks so much for all your prayers!!

PS:  Sorry for the delay in posting.  We had a ton of doctors visiting us all day long.  I started this several different times, but never really had a chance to finish it.

Wednesday, September 28, 2011

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 our request, but we're not so sure about the anesthesiologist we spoke to.

*  Abby's airway will be within the typical range.  This is really important because if her main problem is a small jaw, there are surgeries to correct that and her need for the trach may be lessened.  If it's a small airway, we just have to wait until it grows--which means that she'll probably need the trach for a lot longer.

*  The pain will be maintained and Abby won't be overly bothered with the no-nos.  I'm really worried about her reaction because she puts everything in her mouth.  She's going to be so bitter!!

*  Abby will be able to come back off of the vent easily and quickly.  NO SET-BACKS!!

*  I will be okay with everything:  anesthesia, the surgery, dealing with the nurses, etc.  I'm really feeling kind of anxious about it all and don't want to break down when we leave her or anything.  I've been processing it and I think it's because this is the first time we've been home for the surgery.  The other two were in the NICU, so there wasn't as much build-up.  (Well, there was no build-up for her tracheostomy, since it was an emergency!)  We really didn't know when her g-tube placement would be until the day before.  But this time, the surgery has been marked on our calendar since May.  We've had pre-op appointments.  She's been taking steroids to off-set the risk of infection.  We planned who would have Caleb while we were gone.  We made a packing list a week in advance and did a little each day (staying overnight with Abby, even one night, requires A LOT of stuff!  There's really no room for forgetting anything.)  There's been a whole lot of building up to this surgery, and I'm definitely feeling anxious.

Thanks so much for praying for our Abby Girl...and for us!

Tuesday, September 27, 2011

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!

Monday, September 26, 2011

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 food fills up all but maybe 5 of the cubes, so that means that one container of baby food will feed Abby for almost a month!


I pop them out and store the little cubes in a small Lock and Lock container (the same size I use for Caleb's sandwiches, actually) and keep them in the freezer.


It's not quite the way most of you do/have done it, but it works for us!

Sunday, September 25, 2011

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 important, as pretty much every trach kid is going to need extra help with that.  Kids who have a g-tube will also need non-nutritive stimulation, which is when you massage the cheeks and stimulate the inside of the mouth to get everything working.  If you don't start that early, the child may develop a food aversion later on from lack of oral stimuation....which is no fun at all!

With kids who may have developmental delays, early intervention is the key!!!  The sooner your child is identified and begins therapy, the smaller the gap will be.  Don't wait to see whether your child will catch up.  Get him or her identified and let the therapist be the one to make that judgement call.  Early on in the hospital, I fought long and hard to get Abby the therapy she has.  I think that has made all of the difference in her progress.  I started range of motion exercises with her as soon as she recovered from her tracheostomy, and we've just worked our way up from there.  I'm so thankful for the therapists who took the time to teach me how to work with Abby.  I'm pretty sure the doctors just agreed to the therapy to shut me up.  It worked.  :)

We are now working with Infants and Toddlers, which is an early intervention department in the county, and they have been fabulous.  Both of our therapists have been so helpful and accommodating.  We can tell that they have high expectations of Abby and really care about her.

Saturday, September 24, 2011

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!

Friday, September 23, 2011

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 calories than a typical baby her age would.  Her last weight was 21 lbs 12 oz.  She didn't grow (lengthwise) any last month, so she's only in the 4th percentile for height...and the 70th for weight.  Based on proportion, she's off the chart.  Hey, we all have to excel at something!!  :)

*  My girl is making some awesome gains in both physical therapy and speech.  Her arms and legs are getting stronger and she's able to stand for longer periods.  Her therapist and I both think Abby might just skip crawling altogether and go straight to walking.  Abby is also signing "more" very well now and is able to tolerate her speaking valve better than she has since she's been off of the vent.

*  Abby's cleft palate surgery is on Thursday, the 29th.  We will be heading to RMH on Wednesday evening so that we can be at the hospital bright and early at 6:45 a.m.!!  During the surgery, they will repair her cleft soft palate (the one way in the back that you can feel if you try to swallow your tongue) create a uvula (the hangy-ball thing), do an ABR hearing test, a bronchoscopy (remember, B is for bronchoscopy?), check out her ears a little more closely (no one has ever been able to see her left ear drum), and attempt to put in tubes (our ENT said hers were the smallest ear canals he has ever seen...).  That's a lot and will make for a much longer time in the OR, but all of these things need to be done under anesthesia, so we're glad to do it all at once.  Our ENT, an audiologist, and our maxillofacial surgeon will tag-team this surgery to get everything done. 

If all goes according to plan, the procedures should take a total of between 3 1/2 - 4 hours.  Abby will most likely be on her vent all day and all night while she sleeps off the anesthesia, but they won't send her home until she's back at her baseline of being off while awake.  If she does that quickly, we'll be able to go home about 24 hours after surgery.  I will stay at the hospital overnight with Abby, and will hopefully get to catch a quick shower and nap at RMH when Matt comes over.  I don't want Abby to be alone, as she is very used to having someone there all of the time and gets upset when she wakes up and no one is with her.  It's going to be a strange new place, she is going to feel terrible, and she'll have those awful arm braces (called "No-nos") on to keep her from putting her fingers in her mouth.  I want her to have the comfort of knowing I'm there.


This is a picture of what the No-No's look like.  I have no idea who this kid is.  I just googled No-No's images and this came up.  :)

I'm starting to feel a bit anxious about all of this, as Abby's last surgery (g-tube) was in the NICU and the last time she had a bronchoscopy was when she got her trach.  I trust our doctors and know that this is relatively minor compared to some of the surgeries they've thrown out at us (read:  take out her entire rib cage and put in new titanium vertical ribs!!)  I just know how hard a "stick" Abby is and dread the whole IV process.  As vain (Ha!  No pun intended!) as it is, I really don't want them to have to go to her head.  I also worry about the germs in the hospital and pray she doesn't catch anything while she is there.  Most of all, I'm just worried that she'll lose some of the progress she's made.  I've heard of kids having to go back on the vent after surgery who can't get back off again...that would be horrible. 

I think I'll probably feel anxious every time Abby has to go back in the hospital, just because she's already been through so much at less than a year old.  It's inevitable.

But, we have had a lot of people praying us through the last year, and I know that you guys will continue to pray for the next chapter of the book God is writing for Abby.  :)

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 grooves in the lid so that the dividers fit right into it and seal everything.  I love this container!!  It's great for eating on-the-go, too.  I use it a lot when he has to eat in the car.  If you're trying to get the best bang for your buck, this is definitely one to add to your list.

Thursday, September 22, 2011

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 her to do is Caleb's sign because she likes him best.  :)


*  Abby is still not overly thrilled with eating solid food, but does a bit better if you give her another spoon to play with.  Otherwise, she spends the whole time trying to grab the food spoon.
*  She is learning how to drink through a special cup and straw and has been able to suck the milk up several times.  We're still working on this!


(Penny came for a visit)

Get ready for a big celebration next month, Abby Joy!  I can't believe it's been almost a year!!

Wednesday, September 21, 2011

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.



Tuesday, September 20, 2011

A New Kind of Alphabet Book: C

C is for Catheter, Clorox Wipes, and Cranial 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.  The nurses (are supposed to) clean the hard surfaces in Abby's room with them at the end of each shift.  Of course, I also use them at various times around the house to wipe down the bathroom in between cleanings, to wipe the kitchen counters, to clean a spot on the tile, etc.

The Cranial Band is the official name of Abby's helmet.  Lots of babies who got trachs early on end of needing the Cranial Band because they were on their backs so much during the time when the cranium is molding.  The technician scans the baby's head in something that looks like a Xerox machine.  Two weeks later, a custom-fit helmet comes in!  The cool part is that a bust is made from the scans, and it looks exactly like Abby--with a round head!! 


How long the child needs the Cranial Band depends on the issues, but they usually say it takes about 3-4 months.  You have to commit to making the child wear it 23 hours a day, which is difficult at first.  Now, Abby doesn't seem to mind at all.  We give her quick little breaks when it's really hot, but she's usually good about it.  We're about 2/3 of the way there, and we've seen really good results so far.  I'm glad it's working!!

Monday, September 19, 2011

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 meatless 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 an hour.  I don't think this was really necessary, but it made me feel like I was doing a little more work in making this super-easy dinner!

I scooped some meatballs and sauce onto a roll and dinner was served!

Caleb's official statement was, "Mmmmm!  This is really good, Momma!"  He ate the entire thing.  The boy never realized he was really eating several servings of vegetables.  Success!
Matt's official statement (after claiming he wanted cereal for dinner when he realized what we were having) was, "They aren't terrible."  He said he would eat them again.  Coming from a meatatarian, this is high praise. 


I stored the leftovers in my L&L glass container so that it would be easy to heat up for dinner the next night--which is exactly what we did!

Sunday, September 18, 2011

A New Kind of Alphabet Book: B

B is for Bronchoscopy and Breath 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: 30-40 breaths per minute
1-3 Years: 23-35 breaths per minute
3-6 Years: 20-30 breaths per minute
6-12 Years: 18-26 breaths per minute
12-17 Years: 12-20 breaths per minute
Adults Over 18: 12–20 breaths per minute

Abby's breath rate has always been very high.  There was a time when breathing 80-90 breaths per minute was her baseline!  We've been really pleased to see how her breath rate has decreased in the last few months.  Since we've begun weaning her off of the vent in June, she has gone from an average breath rate of 70 to an average in the 50s!  This is still higher than the number of breaths a child her age should be taking in a minute, but we are making progress.

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 able to remove all of the air, which keeps bacteria from being able to grow.  Your food stays fresher a whole lot longer!

There is a little dial on it that has 1-30 so that you can keep track of how old the food is.  I can't imagine eating 30 day-old green beans, but I guess if they aren't moldy...

I am very anxious to try this container out.  I might do a little science experiment by putting food in one of these, a regular L & L container, an "other brand" container, and a plastic bag to see which one stays fresh the longest!  Look for pictures of the science experiment soon!  :)

Saturday, September 17, 2011

Peekaboo!

video

Isn't that just about the sweetest smile ever?

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!

Friday, September 16, 2011

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 hope shines through when we speak is our thankfulness to God for the miracles He performed in Abby and the unconditional love we have for our daughter.  We want to encourage them to give the families hope and to value the contributions of the people who know those babies better than anyone!  We want to suggest that they develop more of a support system to families who are going through difficult situations so that they don't feel so alone.  We also want to thank the staff for saving Abby's life and for taking such good care of her those first few crucial weeks of her life.

Will you pray for us as we prepare for this?
*  That God will give us the words to say and that we will be able to be transparent and real.
*  That the staff will be receptive and open to us (and gracious of our lack of medical knowledge!)
*  That everything we say will be encouraging and spoken in love
*  That the staff will be encouraged and amazed by Abby's progress!

Our plan is to bring Abby with us so that they can see first-hand how well she is doing.  Pictures don't do it justice!  I am hoping that she will be standing on her own!  I think she's fairly close, so that's a pretty attainable goal.

I am well aware that not every NICU story has a happy ending.  I hope that the staff will be encouraged by a "success story!"

Thanks for praying!  :)

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 accumulate.  Oh. My. Goodness.  It is insane how much trash we collect.  We fill the trash can just about every day with medical waste.  I don't even want to think about what it's like in the hospital!!

Thursday, September 15, 2011

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.

Wednesday, September 14, 2011

A New Kind of Alphabet Book: A

A is for Apnea monitor, Ambu bag, and Alcohol 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.


The ambu bag is used for what some people call "bagging."  It helps to push oxygen into a person's lungs if he or she is having trouble breathing.  While the ambu usually hooks up to a mask that is over a person's nose and mouth, people with trachs have the ambu attached right to the trach.  The bag is squeezed so that air is being given as a person inhales.  The ambu can also be used to deliver inhaled medications through a trach, which is how we give Abby her inhaler.  Our ambu bags stay attached to our portable oxygen tanks so that they will always be ready to be used in an emergency.


Alcohol prep pads can be used for all sorts of things, but we usually use them to clean dirty toys and equipment.  When Abby gets into a toy-throwing mood, we use an awful lot of them.  Other kids might use them to clean an injection site before getting daily shots, or to clean the gtube before hooking up a feed.

Shake it Like a Polaroid Picture...

Name that song!!  :)

video

PS: The other noise you hear in the video is Abby's heavy breathing because she's shaking so hard. It's good exercise!

Tuesday, September 13, 2011

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 of our everyday vocabulary.  These are tier one words for us now, teacher friends!  :)

So, look for the "A New Kind of Alphabet Book" blog series in future posts.  Right now, I only have the words for each letter--no explanations.  It's a work in progress. 

And no, Caleb did not take the apnea monitor for A.  He took his Alvin and the Chipmunks CD and his Abby doll (the one that has a trach and gtube--all totally his idea!)

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.)

Monday, September 12, 2011

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?

Sunday, September 11, 2011

Saturday, September 10, 2011

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!




Friday, September 9, 2011

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!

Thursday, September 8, 2011

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!