Emism

We all know how much I love the Duggars, and I have truly learned a lot from them.  When Jim Bob and Michelle spoke at the Homeschool Convention, they spoke to my heart. 
I'm always telling Matt that such and such a book said this, and he says, "and how many kids do they have?"  Almost always, the author has less kids than us, and then Matt comments that I could write the book and have more knowledge than the author.  This may be true, who knows.
The Duggars, are the exception!  They know a lot about raising kids!  They have been here...right where I am!  And survived!
I have taken so much from them and applied to our lives.
One thing we have applied is a loose buddy system.  The Duggars have an older child paired with a couple younger children.  They are buddies.  The older one helps the younger ones throughout the day.
We started to realize that we need a buddy system, or else I'd be spending all my time tending to the needs of the little girls. 
We have assigned the boys a rotating schedule to be Emily's buddy.  Her buddy buckles her in the car seat, helps her get breakfast, helps her put on her shoes, and any other little thing that she may need.  Of course, big stuff like kissing boo boos and the sort come to mommy. 
The boys usually love the system because it makes them feel important and yet since it isn't every day, they don't get bored with it.
Emily takes this very seriously and won't let anyone unbuckle her in the car except her buddy, and if you are her buddy that day, you lose your name.  She simply calls you, 'buddy'.  It's awfully cute.
The other day, she was wanting some toaster waffles from breakfast.  I was busy tending to Nannie and getting ready to start laundry.  I asked her if she could find her buddy and ask him to help her with that.
She said, "Collin's my buddy, but you're my best friend!  I need YOU to do it". 

Point taken...I got her the waffles.

I hate feeling like this

Everyone once in awhile, I get to feeling so down about the CHD world.
I know I've written it before, but it just kills me that so many people deal with this.
I know that writing about it can't make it go away.  I just hate it so, SO bad.
Last night I was thinking that if you want job security, you should become a pediatric cardiologist.  There will never not be a need for them.
At the YMCA I am constantly scanning everyone's chest.  I never see any scars.  I wonder why.
I scan because even though I hate all of this, I'm always desperately looking for someone who has been where I have.  I need someone I can connect with.  Someone who understands what it's like to have gone through this hell.  To live this life.
I have loads of CHD friends on line, but I really need someone in real life.
Tonight is my second meeting with the local Mended Little Hearts group.  Could you please pray for me?  That I might meet someone who I can share my fears and joys with.  I would so appreciate it.
I know we'll be ok, and I will survive all of this.  I just need to be lifted up in prayer once in awhile.  :-)

When Mama Ain't Happy,Ain't Nobody Happy

Today was a grumpy day.
I have no idea why, but most of the day, things just rubbed me wrong.  Kids kept touching me, and everyone wanted something.

Really, no different than any other day.  I was just grumpy.

And as the day went on, I noticed that everyone around me was getting grumpy.

All day I thought, 'my poor kids don't deserve the grumpy mom they got this morning'.  I just could not shake it.

While I was thinking about how to get out of the funk, I was hit with the need to share with all you moms something that has taken me years to figure out.

I've been doing this mom thing for almost 15 years, and it's just now hitting me.

We've all heard it.  We've all said it.  But do we all believe it?

When mama ain't happy, ain't nobody happy.  For some reason I have always just assumed that was just a cute little saying.  Then I started to really pay attention.  Literally, within the last few months.
Moms, I challenge you, the next time you are grumpy, look around you.  See what happens.
When we start looking like this

*

Pretty soon everyone is looking like this

WE HAVE POWER!!  These little people react to how we act toward them.  I know, this is a total 'duh' moment, but honestly, think about it.

Nine times out of ten, if your kids are grumpy and fighting, all you have to do is take a hard look at yourself.  Have you been grumpy?
Now, don't get me wrong, I know there are those days when you try your hardest to be happy and your kids are still bickering and whining and just being little grumps.  I get that...believe me, I do.  I still think though, that if you went to the beginning of the moods, you could figure out what happened.
When your darling little child said she didn't want to wear the outfit you had picked out for her, did you react kindly or was there some irritation in your voice?  I know for me, I can answer with a fake smile on my face and some an irritated tone in my voice.  Kids are smart though, they can see right through that.
That one event may set the tone for the rest of the day.  Then she gets more whiny, and you get more grumpy.  It's a vicious cycle!
We must continually remind ourselves that these little people are the biggest blessings we could hope for.  Not a single one of us deserves them, and yet, we are given them. 
So I'm challenging you, and me, to take a step back when kids are getting the grumpies.  How are we acting?  Is it time to take a timeout?  For you, just leaving the room my help.  I know for me, I have to go and pray.  It's the only thing that helps.  Let's remember how quickly this time goes and how happy these little ones make us!
~A cheerful heart is good medicine, but a crushed spirit dries up the bones.
~Proverbs 17:22
*Don't ask about this picture.  It's awful, I know.  It was taken on the cruise and we are all being silly and making mean faces.  It's the best I could come up with, because I don't normally take pictures of myself being grumpy.
Emily on the other hand.....

Mission Impossible

Last Sunday, the weather finally warmed up, so we took the kids to the Cincinnati Zoo.

Whenever we do things like this, I feel the need to try and get a great picture of all the kids together.

My mother-in-law and my brother-in-law's wife (I had to say it that way so you can understand the two are only related through marriage, so this is nothing genetic!) are amazing photographers.  They just have this eye for good pictures.  They also have this ability to pose everyone just so.

I want to be able to do that.

Except I wasn't blessed with that eye.

I also don't possess the patience that it takes.

This doesn't stop me from trying.

I would try to say that my issue is the sheer numbers I'm working with, but I'm sure they'll get amazing pictures of my kids the next time we see them.

Here's an example of my lack of skill.  I didn't actually take these photos, Matt did, but I was the one who threw them all up there together and should have gotten them arranged in a good manner.

At first glance, you may think this is a picture of the boys.  And I must admit, it's a decent pic of the boys, but look down low.  Miss Emily is there, barely!  What happened???

Everyone look here!  Decent smiles.  Except those pesky bugs must have been getting Dillon!  Oh and who is Emily looking at?

I then decided that since everyone was acting semi human, I would add Natalie.  I had been wearing her, so she wasn't happy about leaving me and going to Dillon.  Zachy, however, finds this amusing. Emily almost looks like a floating head.

She was trying so hard to get out of Dillon's arms.  At least Emily has a body here.

After lots of me jumping up and down and making faces and crazy noises, we got a halfway decent shot.  Too bad Nan isn't looking forward. 
That's it, that's a s good as it gets!  How sad is that??
Dillon seems to have a pretty good eye though!  He caught this fish.

Perhaps it will be our Christmas card photo this year!

Well shoot, I don't think I'm too helpful!

I was just looking at my referrals and the phrases searched most to get to my blog.
The top three searches are, TAPVR, TAPVR girl, and TAPVR mom.  Strangely, the next is TAPVR Natalie Grace.  I have no idea if there is another Natalie Grace out there with TAPVR, or if someone we know uses that phrase every time they come here.
It's odd though, because I searched those phrases, and went through several pages of TAPVR, and TAPVR girl and didn't come across my blog.  TAPVR mom brought me up on the second page, I think.
But here's the thing...I don't think I'm that helpful to someone searching for TAPVR.  When you are searching TAPVR, you are wanting information.  Where's mine?  UGH!  Maybe I need to link to some of my pages for that desperate TAPVR searcher.  But what?  Have I ever said something that made you say, "ahh, yes, now I get it"  or, "thank goodness I read that, now I have hope!" 
I don't think so.  I think it's because, I don't know..I was going to say I don't talk about it that much, but maybe I do. 
If you were desperate to find TAPVR info, what would you be looking for at my blog?  Has anything I've written ever stood out to you?
The whole purpose of me blogging about CHD is to help others have hope, but I really don't think I've ever done that. 
Enlighten me!  Tell me what to post!
Wow...spellcheck hates TAPVR and CHD...funny..so do I!!!

Happy Family

Matt got home in the middle of the night last night. 
We are a happy family.
Add to that, the weather is gorgeous today, and I think we are headed out to Cincinnati to the zoo.
Matt is handing out goodies for the convention.
Kids are so easily thrilled.   The kids got devices to put on their ipods, between the ipod and headphones, that keeps the sound at a safe level.  They all got mints, and pens, and notepads.

I got a magnet and the best thing of all..two chocolate ears!!  WOOT!

Zachy is currently having an earmold made of his ear.  Silly kid.

The highlight of Matt's week was seeing the Blues Brothers.

Alright, the hats weren't really from the Blues Brothers concert, though he did see them in concert, as well as Collective Soul.  The hats are from a roarin 20s party the first night there..I just think they look Blues Brothery! 

Whew..I am pooped!

Matt has been gone this week.  Partying it up in Chicago.  OK, not really.  He is in Chicago at an audiology convention though.  He left last Sunday, and a little bird (named Matt) told me that he would be home late, late, late tonight, instead of tomorrow.  Hooray!
I tell ya though, we sure do run around a lot.  Everyone is always so concerned about the socialization of homeschooled kids.  It's funny though, because every homeschool family I know will tell you we have the opposite problem.  We have someplace to be, that involves at least 2 kids, every weekday. 
It does make the time go fast when Matt is gone though!
I have to add here, that it amazes me how Matthew steps up and takes the roll of Man of the House, when Matt is gone.  He is growing up way too fast for me.  Yesterday, when I was prepping the kids for what would happen if the government shut down, he said, "how old do you have to be to get a job at McDonald's?  I'll find a job somewhere!" 
Thankfully, as we all know, the government didn't shut down and I don't have to be responsible for selling my kid out for child labor.
So today was particularly exhausting.
I think all the running just caught up with me.
The day started out good, we got up and were on time to church.
In Sabbath school, Emily was a one man show.  Boy that girl likes to be the center of attention.  She was tired though, and by the time church was over she was melting down at regular intervals.
We were in the mother's room during the service, and I hope my kids got something out of it, because I dozed off...shhh, don't tell the pastor!  I couldn't help it, it is just so dim and quiet in there, and the chair was so comfy, and the baby was sleeping in my arms, perfect dozing scenario!
After lunch, Em, Collin, and Zachy went with some friends who took them to Adventurers for me.  Thank you, Tricia! 
The other kids and I came home to discover the dog ate something that didn't agree with his tummy.  Let's just say, a dog with the runs that is not potty trained is NOT fun. 
We put him outside, but it had been pouring earlier and he became a big mud ball. 
Matthew gave him a bath, and we tried to avoid him becoming another mud ball by keeping him in.
Unfortunately, he still needed to use the yard, and used the carpet instead.  As I'm cleaning this all up, Nannie got her brother's toothpaste.  She had been into one thing after another, and for a brief moment I almost let her keep the toothpaste, but came to my senses!  She was a sticky mess and the floor was a poopy mess. 
I did learn today that Rockin Green laundry detergent rocks at getting poop stains out of carpet!!  Good to know! 
Now it's pizza time, and Collin just pulled the pizza out of the oven, only to drop it on the floor!  I guess that's my cue to get back to being a mom!
It's movie not, Voyage of the Dawn Treader is up tonight!  We'll see if I can keep my eyes open.

Has Spring Finally Sprung?

For the last five years that we were in Texas, I have missed spring and fall something fierce. I was so excited to move someplace where there was four seasons.
Only when we got here it was winter. We got her in November and shortly after we arrived, it started snowing. This was fine and dandy for, oh, about a month or two. But then it didn't stop. It just kept on being cold, and snowing.
The first day of spring came and went.
As people were reminding me that I had wanted four seasons, all I could think was that winter was overstaying it's welcome!
I still think that! Just the other day it was spitting snow. In April for Pete's sake!
Finally, trees are starting to flower. And they are gorgeous! They don't have these kind of trees in Texas! Most of the trees still don't have leaves though, and I can't wait to see the all green and leafy.
I'm anxiously waiting to see what will come of the tree in our front yard. I was certain it was a magnolia tree, but all the magnolia trees are blooming and ours barely has buds. Now that I see them blooming I realize the branches look different. No idea what it is though.
I was so hoping for some daffodils or tulips, but apparently the old owners never planted those, so no flowers in my yard. BOOOOO!!!
Our back yard is wooded, and I am just so anxious to see what the future holds.
Meanwhile, the house across the street has a tree with beautiful white flowers on it. I look at it and remind myself that spring has indeed sprung.

Keepin' it Real...my new motto

If you have been with me for awhile, you've seen this blog go through many name changes.
After having Nannie, I needed to change it from Five Little Monkeys to something else. I was really struggling with things, and really needed to just write. No creative juices were flowing, so I just threw "my journey" up in the title bar. Since then, I've been wanting the perfect blog name.
I was leaning towards a name like,"showers of blessings" quoting scripture. Mainly because behind everything I do is a great love and faith in my Heavenly Father. I wanted this to come across the minute you came to my blog. My faith has made me who I am.
There have been times when I thought I'd just do a CHD blog and give it some clever CHD name. However, CHD is only a small part of our lives. Even though it may seem, because of blog posts, that CHD rules our lives, it truly doesn't. What you see here is me dealing with it the best I know how, in hopes that maybe someone else will be able to relate, and know they aren't alone.
Fast forward to last weekend. The Midwest Homeschool Convention. I'd say this convention was life changing for me. Which is odd to me, because really, it was a homsechool convention, right??
God gives us what we need to hear though, when we need to hear it. I went to the convention with plans of sitting through meetings on unit studies, planning for college, and educating the child who may not learn as easily as the rest of them! And I did!! All except the last one.
I also sat through one by Todd Wilson, called Lies homeschooling moms believe. It was all about the perfect homeschool family. You know, the one that does NOT exist! It's a facade! All of it. We all struggle! We all do the best we can. And we all fall short of our own expectations. All the while, we think miss Susie down the street doesn't struggle, that she has hot gourmet meals on the table every night (and afternoon and morning!!), and that her house is immaculate.
There is no such person!
I have spent way too much time envying miss Susie. I have longed to be the person who has it together. I have felt like a failure!
That's the thing. Those of us who refuse to let the facade down, are actually a discouragement to others!
I'm not just talking homeschooling here. I'm talking every aspect of life.
I have been told, more times than I can count, what a great mom I am and that so and so has no idea how I deal with all I deal with. Let's be real....I have never, not one day, felt like a great mom. I know my shortcomings. And while we're talking about this, let me assure you, I am not the strong person you think I am. I am weak. I deal with what I deal with because I have no choice. Given the choice though, I would never choose to deal with what I have. And I praise God for holding us up through the rough times. It's only through Him that we have survived!
As I was vacuuming my stairs today (something I only do when they get very, very nasty) it hit me...I don't want to be a discouragement to anyone. I want to be an encourager.
And so, I need to KEEP IT REAL! I hope to turn this blog in a different direction...one in which you can find encouragement at.
For some reason, people tend to think that those of us with larger than normal size families have it all together. I plan to debunk that.
I don't want you to waste any of your time envious of some facade.
I hope you'll enjoy this new turn, and that you'll stick around with me as we take this journey together!!
As a side note, I'd LOVE to do a revamp of my blog to reflect the new Keepin' it Real blog. If you know a great blog designer, who designs cheaply, please let me know!
Keep it Real everyone!

A Rare Breed

I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.

Home Sweet Home?

I've had this entry rolling around in my head the last couple days, but just don't know how to start it.
I love my house. I really do. It just doesn't feel like home, yet.
The people who lived here before us, lived here 34 years. They raised their family here. The neighbors have all been here equally as long, with the exception of one set, who has been here ten years.
We knew that the previous owners may be staying in town, and it felt weird. In the back of my head I pictured them driving by, criticizing everything we may do to the house. Always thinking of it as theirs.
And really, I don't blame them. I feel like my childhood house is my house, still. Even though I haven't lived there in a very long time. So for them to always think of this as their house..I get it. I just don't want to know about it.
We heard from the neighbors that the POs (previous owners) were staying with their son in Texas. Most likely moving there. What a relief.
And then it happened.
The day before Nannie went in the hospital, there was a knock on the door.
I answered it and was greeted by Julie.
Julie is the daughter who grew up here.
She was in the neighborhood and brought the keys by.
Only it was really weird.
She told me all about how her mom didn't want to move, and they never expected the house to close.
She then told me that her parents were now homeless because it all happened so fast.
She confirmed my thoughts when she let me know that she and her parents drive by often.
Now, is it my problem that they are homeless? Homeless meaning they haven't decided where to live, because it is my understanding that they are pretty loaded.
Is it my problem that Mrs. PO didn't want to move?
I mean, really, if you don't want to move, why put your house on the market?
AND, they could have not accepted our offer if they truly didn't want to move. Or if they truly felt like we took them to the cleaners.
It is frustrating to me to know this.
And it doesn't help that I feel like all the neighbors are watching us and reporting back to them. I mean, that's how it would be if we left somewhere after being there for so long. I get it. But like I said, I don't want to know about it.
Then, like a slap in the face, their mail started being delivered here again. Like they only temporarily had it forwarded. I've taken it to the neighbors, who have them come pick it up. Again, so weird.
Last night, I met the girl across the street. She has a two year old daughter. She and her husband moved in recently to care for her grandmother. She never lived here till then, just her grandparents. It's good to have at least one person who I don't feel is watching every move we make.
And it's all nonsense...people have been so nice to us. I just feel like we are house sitting, with our furniture, trying to fit in where we don't belong.
How long do you think this will last??

Random

Just a few thoughts that are too long for status updates on Facebook.

~Collin, about Nannie, "We are so lucky we got that kind of baby. She is so funny." Apparently, there are different kinds of babies, and we got the funny kind. YAY!!

~Speaking of babies...today at the vet, a tech commented on the fact that Nannie is so small. She has a 16 month old who she says is huge. It's true though, Nannie is small. She weighs just 19 pounds. Most of my kids have hit 20 pounds long before a year old. Nannie is 14 months. At her last appointment, they were concerned about her weighing 19 pounds, because her growth curve has changed so much. She gained a pound or two, and now after her time in the hospital, she is 19 pounds again. She's just little, and oh so cute!

~This illness is making it's rounds. The last day Nan was in the hospital, I got really congested and felt awful. I'm down to just a runny nose. Two days ago, Matt had the same thing. A day of horrible congestion, oh and a fever. Today, it's gripped Dillon. I hope it's just one bad day for him too.

~This stinks because they wanted us at church tomorrow to do our second reading and vote us in. Our new church has been amazing. They brought all sorts of food to Matt and the kids. Two days, I had elders come sit and visit with me at the hospital. Collin and Zachy's teacher also came to visit. It would have been so lonely if they hadn't come.

~I do have a new friend. Well, I may have mentioned her before, but she is the teacher I just mentioned. She's great,and has kept me sane here. Her kids are Collin and Zachy's best friends, so it's been a blessing.

~Pathfinders here isn't going so well, and it makes me sad. Matthew hates going. And it stinks because there is just one local club so we can't even try a different club. Adventurers is kind of the same. And they are sooo organized...Adventurers and Pathfinders are having their investitures on the same night, at the same time...at two different churches. So yeah, how will we split ourselves up? And seriously, are we the only ones with this issue?? It's just really frustrating, but I'm trying not to complain.

~I really want to love it here. I'm hoping that as it warms up, I will. I'm just so over the cold weather. It's nice today, but still overcast. I need some sun to help my mood. I am missing Texas so much right now, but like I said, really wanting to love it here.

~I was so pleased that it warmed up...I had bought clothesline and was looking forward to hanging the diapers out today. Then I realized I didn't buy clothespins!! Whoops!!!

~The kids are dying to go for a walk, it will be short because of Dillon, but I guess we will go. We all need the exercise and fresh air.

~Oh...last thing,check out this article from USA Today, pretty awesome

Update

Yesterday, Natalie got to come home from the hospital.
What I learned through this illness is how quickly kids go downhill, and also how quickly they get better.
One day she was on oxygen, the next, going home.
I am so, so grateful to have my little girl. Things were so scary. I'm glad to be done with that, and never ever want to experience something like that again.
I am certain that RSV is the devil. Seriously. To see all the itty bitty babies on vents because of this awful illness was just heartbreaking.
But...we are home now. Ready to put it all behind us and move on.
I am so thankful to all the people who brought meals to my family, who offered to watch the kids, and most importantly, I am thankful to everyone who prayed without ceasing. God is good...all the time.
It's time to get back to living. we lost a week there, and it is hard to get back into the swing of things. Today is just a kick back and relax kind of day, even though there is much to be done. The work will always be there.

Stop the Ride, I Want to Get Off!

I sit here updating my little blog from a room in the PICU. We have been living here since last Saturday. One week in this little room. It's been quite the ride, and if you don't mind, I'd like to get off now.
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!

Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!

Getting sicker, I'm not sure what night this was..but she was one sick little girl.

Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.

Cute dinosaur masks to nothing for 14 month olds!

This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.

OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!

Our Decision

I've been asked about our decision to have another baby after having a heart baby.
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)

Spilling it

Lately, I'm really struggling with myself.
I am so unhappy with my body. I have been my entire life. I feel like a broken record, I know you have heard this all before.
My weight affects almost every part of my life. I hate meeting new people, because in my head, I am thinking that they are thinking what a fatty I am. I especially hate meeting new people with Matt, then I'm really certain that they are looking at us wondering what he is doing with me.
The one place it doesn't affect me is with Matt. I know, without a doubt, that he loves me, no matter what I weigh.
My kids like to tell me what a jiggly belly I have. It's awful.
You would think that this would be enough to do something. I started weight watchers last week, I did really well. Then this week came and I totally fell off the wagon, and I gained everything back. Which tells me that I lost water weight, but still.
I feel like such a huge failure. I hate that this consumes me, and yet I don't have enough will power to change this.
I sabotage myself. I tell myself that I need to lose weight, and I think that for a long time. Then I tell myself that I really just need to be happy with myself.
*sigh* I don't know..I just feel like a huge failure.

Hodge Podge

Life is back to normal! Everyone is well and we have resumed life as we know it.
Last Friday, we had a great time! We went with the homeschool drama group up to Greeneville to a museum that has loads of Annie Oakley artifacts. We learned lots about Annie and Frank Butler. The kids really enjoyed the rest of the museum as well. Our group was too big, and I think that someday we may go back with just our family so we can take our time and soak it all up. It really helped bring the play to life though.
This week, we have something happening almost every night. How quickly that happens.
Tonight we went to the Y where I did water aerobics, and everyone else swam. It was the first time Zachy has been able to swim since surgery!
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I just started typing out our whole schedule for you, and then realized you really don't care! LOL
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OH!!! This is CHD awareness week! I've been a busy little bee spreading awareness where I can.
I have been busy trying to get "likes" on my Go, Baby, Go! page in an effort to reach more people. I'm currently having a contest to give away 3 bags of Rockin Green. Also, if I hit 200 likes by Wednesday at midnight, I'm going to draw from the fans to giveaway a knickernappies diaper. I also donated a mobywrap to an auction whose proceeds go to CHD awareness. You can click on that Go, Baby, Go! button on the side to like my page for details! I'd appreciate it!
What is Go, Baby, Go! you ask? We carry cloth diapers, baby carriers, teething jewelry, and baby skincare. We also offer local people the opportunity to actually see the dipes and try them on your baby. We offer cloth diapering and baby wearing classes, AND we offer a newborn rental package, which I think is just great!
If any of these things interest you, please go like me!!
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Somehow this got totally rambly...I'm tired..I need to go to bed. Hopefully, next time I'll have something intelligent to say!! HA!

What a Nightmare!

Oh my goodness...what a horrible week this has been.
It started on Monday, with Zachy's surgery. They had a hard time because the lead wire giving them trouble was somehow wrapped around a muscle. Instead of the hour and a half they were expecting, he was in three and a half hours. There was lots of muscle manipulation, which caused him so much more pain than they first thought.
The first night, they thought he was doing pretty good, but then he started vomiting. He was unable to keep anything down. Finally, by mid morning that had passed and they discharged him.
He was pretty miserable all Tuesday.
Wednesday morning we woke up to Matthew feeling very poorly. Through the day, Dillon started feeling poorly as well.
I talked to Matt and he said he too, was feeling bad.
By the time it was time for Matt to come home he was feeling so bad that he almost called me to come pick him up. He made it home, but immediately crashed on the bed.
Thursday came and Matt stayed home from work, feeling horrible.
By this time everyone but Natalie and me, was feeling the crud. What sounded like a simple cold, was wiping my family out. They had coughs and headaches and lots of sinus congestion. Fevers as well.
Friday, Matt went to work, only to come home a couple hours later. I started to worry about him because he was in bad shape, and didn't seem to be getting any better.
It's strange, because writing this out, I realize it was a relatively short amount of time, but it all felt like an eternity.
Last night, people's appetites started coming back, so we had breakfast for dinner.
At bed time, Nannie started throwing up. This was different from what everyone else was suffering. She continued to throw up all night long. She would throw up and then want to nurse for comfort. She doesn't realize that nursing would make her throw up more. So all night the cycle continued.
This morning, Matt was feeling a lot better. The kids are all doing better as well.
Natalie went all day without vomiting, but has now started again. We shall see what the night brings.
Somehow, I have managed to not get ill. I'm worried that it is going to hit me soon, but so far, so good.
It has been a horrible, horrible week, and I am SO glad it's over.
Zachy isn't in too much pain at this point either. Thank goodness!

Monday, Monday

No..it's actually Friday...but this Monday is the one I'm referring to.
If y'all could say a prayer for my Zachy, he'll be having surgery.
He has a lead wire that is threatening to break through his skin. If this happens then they would have to remove everything.
To avoid this, they are going to open up the pocket where the pacemaker is and revise that wire. At the same time, they will replace his pacemaker with a new one. One that is better than the one he has in now..and one that has a new battery! His battery currently has about 5 years left on it, but this will boost us back to seven to ten years. Then, if nothing else happens, he won't need another surgery until then.
He will stay overnight in the hospital. We got a hotel room there and will be staying nearby. The hard part will be the fact that no one under 14 is allowed upstairs, so we will have to split ourselves up. We will get through this though, we always do.
In other news, we are settling into our new house nicely. I love it. It is starting to feel like home. Currently, we are painting Emily and Natalie's room pink. Oh my is it pink. And Emmie LOVES it. I can't wait for it to be done so she can move back in to her room. Then we will work on the other bedrooms. After that, who knows what we'll paint.
We are close to being all unpacked, and I just wish we could finish it up and be done. I just keep putting it off though. Tsk Tsk!! I'll get there though.
The kids are enjoying the snow and sledding down our hill. Course they didn't have a sled so they were using the recycling bin! The neighbors felt bad for them and gave them one of theirs. Our neighbors are great, so kind.
This entry is totally all over the place, but I just wanted to jot some things down, but mainly ask for prayer for Zachy.
I'll keep you posted next week!

Buried

I am buried under so much to do.
Posting here isn't a high priority, though I did want to post yesterday.
Yesterday was Miss Nannie's first birthday! I can't believe she is a year! We are so thankful she is still with us. She is amazing, and wonderful, and all things good.
I didn't get to post though, because we moved into our house on Thursday.
We love, love, love it, but there is so much to do. Of course, this begins with unpacking. It is amazing how much stuff eight people can accumulate. I am getting pretty toss happy at this point.
The house is in absolute shambles right now. There is stuff everywhere. I have unpacked, and unpacked, and unpacked. I am almost done with everything upstairs. Downstairs is mainly just books. The bookshelves need to be hooked to the walls, but the battery to Matt's drill is dead, and he doesn't know where the charger is. It's all very frustrating!
I can't wait to be all settled and back to just living. I'd love to be done for the most part by Monday, because we need to get back to school.
Anyhow, posting will be scarce until I get all settled.