Saturday, April 30, 2011

One long week

I feel like this week has been a month long.

This has been a hard week.

Seeing your child feeling sooooo terrible, not easy on a Momma's heart. But I know, as hard as my week has been, hers has been worse.

We are beginning to feel like we have done permanent damage to our littlest. She is so unhappy. We are longing to see our Grace's smile again.

The surgeon feels like the surgery was quite "Successful". That is .... he got done what he wanted to get done. But, it was a lot. And it hurts. A lot. The major part of her surgery was, of course, the palate repair. But, Grace also had tissue added to the underside of her upper lip to "release" her lip. Additionally, the surgeon also repaired a small area on the outside of her lip.

The first couple days home from the hospital we were practically forcing her to drink. She refused (and still refuses) a bottle, a sippy cup, and a spoon. The only way we can get her to drink is through a medicine syringe. She still isn't eating. She has eaten two yogurts in a week. That's it.

Mid-week she ran a fever and the swelling on her upper lip got worse. After seeing two doctors in two days... they determined that she must have gotten a virus, because the fever didn't seem to be related to the surgery. A relief. BUT... we had one miserable girl on our hands.


(I kept finding Grace with her blanket laying in the middle of the floor. Just so sad. Here, B lays with her trying to comfort her)

Still, she isn't sleeping well at all. She isn't eating. and she is just barely drinking enough. But, her swelling has gotten much better in the last two days, so we see that as a sign of good things to come. There are also periods of time that she does get off my lap and go play for a little while. For those moments... we are also grateful.

I have no idea if this normal. As much as I have read about cleft repairs, every child is different, so it's hard to really know what to expect and what is "normal".

All I know for sure... I want her to feel better.

(Looking a little better! But, those eyes are just so sad)

Needless to say. We're pretty tired around here. Between trying to nurse our little one back to health and keeping up with the crazy amount of spring activities... we're about to fall over by the days end.






Wednesday, April 27, 2011

picture

Just looking over the blog... in preparation for a blog makeover coming soon!

Just so you know, and keeping it real here.

I SO don't look like this picture ------------->

two years ago... yes. But then I waited through a one year adoption roller coaster.

and ate a lot of chocolate.

and stopped getting my hair colored by a professional.

and ate a lot of chocolate.

I'm keeping the picture for now. I like it. It reminds me of days gone by.


Tuesday, April 26, 2011

THAT was not fun.

I'm leaving the pictures for the end of this post so that if you would rather not look at yucky pictures.... you can skip it. :)

We are OUT of that darn place.

Grace was finally released to go home yesterday morning after pulling her IV out. Nice work girlfriend!

If you hadn't figured it out... that means we were at the hospital THREE nights. Not one. As we had hoped. Not two. Which we dreaded. BUT THREE.

Between a lot of swelling, dropping oxygen saturation levels, difficulty managing her pain, and her unwillingness to drink anything... we were there three nights.

We barely slept over those three days. She was/is in a lot of pain. But, she is starting to come around and is looking a little better every hour.

We are glad to be home. She is happier. She is playing. She is drinking more (but not a lot) and today she even got to eat a little watered down baby food.

I'm posting these pictures. And telling our not-so-fun story here because I want others who might have children going through this procedure to know what it could be like. Not every kid experiences what Grace did. Many get out of the hospital the next day. But, this is her story.

HEY! According to our insurance company this could be outpatient surgery- and "care can be managed at home" HA! Yup, the breathing tube, the oxygen to keep her oxygen levels up, the multiple doses of morphine in her IV to keep her pain even remotely under control... yeah... all could have been managed at home.

Crazy people. But, I'm not bitter about that or anything.

This is a TOUGH surgery. I am really no wimp when it comes to this stuff. But, this was HARD for me. And REALLY HARD for poor Grace. Her pain was quite bad. Getting her to drink was harder than I expected. and three nights of no sleep is never fun for anyone.

But, she did it.

My sweet girl. I'm sorry you had to go through this. MORE THAN ANYTHING... I wish you didn't. MORE THAN ANYTHING... I wish I could take your pain away. MORE THAN ANYTHING... I want to feed you dumplings and noodles instead of baby food. MORE THAN ANYTHING.... I want you to sleep comfortably. Soon, my girl. Soon.

Here are the pictures...

Looking cute... waiting in the waiting room...

In pre-op playing with stacking cups...


Up in her room, a few hours after surgery...

Friday evening...


Saturday afternoon, almost 24 hours after surgery... finally awake and not crying. Up until this point, if she was awake... she was screaming.

Because who wouldn't scream if you looked/felt like this...

Easter Sunday, her brothers and sister come for a visit...

Going home... just after pulling her IV out...

and today she looks even better. I'll get a picture up soon. :)


Saturday, April 23, 2011

Surgery update

I wasn't quite prepare for this. I mean, I was. But...nothing quite prepares you to see your little girl, who has only been with you only eight short weeks, in so much pain.

And she is in pain.

A lot of it.

The nurses are trying to keep it under control, but it hasn't been easy. If they give her too much pain medicine her oxygen saturation drops. So, it's a balance.

For the first time all.night... She is sleeping comfortably right now. A nice dose of morphine will do that.

She is so swollen. SOOO swollen. She has a little breathing tube in her nose to help her breath a little better. basically...she looks awful.

I never had to sit by a bedside in a hospital overnight with one of my children. I'd like to never have to again. Because seeing her like this.... Awful.

I'm pretty sure we won't be going home today unless she drastically improves in the next couple hours. I'm totally ok with staying because I can't imagine taking care of her at home right now.

While I know that this is all going to help her in the long run. Wow... I'm feeling terribly guilty that we had to put her through it.

I'm eagerly awaiting the return of my rock, my husband, who went home for the night to be with the kids. And I'm drinking a very large cup of coffee. Perhaps they can hook up an IV for me?

Thursday, April 21, 2011

two months.

It's the 21st.

That means, it's been two months since we first met our daughter.

and she has gone from this....


to this...


and now this...


What an A-M-A-Z-I-N-G two months it has been.





surgery

Is it fortunately? or unfortunately? Grace has surgery tomorrow to repair her palate.

I KNOW she has to have it done. But, It's killing me to think of putting her through surgery. And worse, the couple weeks of recovery that will follow.

Have I mentioned? Grace LOVES to eat. Anything. Everything.

OH so she is going HATE a liquid diet. and HATE even more the soft diet that follows. and I am going to feel SO bad for her.

How will I say no to this face?


We've been fighting with the insurance company this week. They have decided that they will not cover an in-patient stay for this surgery. They will cover the cost of the surgery, but they are insisting it can be done outpatient. Our craniofacial team has NEVER seen an insurance company do this. They have appealed. And re-submitted the pre-authorization. Again, it was denied.

I've been assured that the doctor will be able to document it as medically necessary tomorrow and that eventually the insurance company will pay. But, I'm not so sure.

The pre-op nurse I talked to yesterday morning says they NEVER release children that have surgery on their airway, the same day. She insists it has to be a mistake. Obviously, the insurance company doesn't agree.

So, we go in faith tomorrow that this insurance will all work itself out. We are going to focus on getting our daughter through the day tomorrow and the recovery after.

So, if you think about it tomorrow... please pray for our little Grace. She isn't going to know what is going on. She is going to so be scared (again).



Tuesday, April 19, 2011

The six take Manhattan

We don't mess around. Nothing stops us. Not even four kids 8 years and under.

So, we hopped in our car, headed down to the train station and took the 9:13 express train into Grand Central Terminal...

and took over Manhattan! For the day.




Oh what fun!



We rode the ferris wheel inside Toys R Us in Times Square.


We got ripped off by the Hershey company at the M & M store.



but OH boy... were the kids happy!



Took at double-decker bus from Times Square downtown.

Our big mission was to explore two areas of cultural significance for our family.

Chinatown and Little Italy!

which just happen to be two neighborhoods right next to each other.

Bubble Tea. Yum.



and cannolis. Double Yum.

Grace slept through Chinatown for the most part. But, we did manage to snap this one picture. Doesn't it look like we were all in China together!



She LOVED the cannolis. Because who doesn't love a cannoli.

Then we hopped back on the bus. Went to Battery Park to catch a glimpse of Lady Liberty.





and then back uptown to Rockefeller Center and the American Girl Doll Store. No buying. Although K was drooling a whole lot.

Dinner and then back home on the 8:35 pm express train.

Everyone was a little tired. Most looked like this.


and this.



and this.



Except for this one.






Sunday, April 17, 2011

Funny comment

I know everyone who has adopted has these stories. But wow.

We get a lot of comments and questions when we go places.

You know...

Where is she adopted from?

What made you decide to adopt?

How much did it cost? (yes, people we hardly know often ask this question)

Does she have cleft lip/palate? Did you know that when you adopted her?

And list goes on...

But I got a new comment today.

"Wow, her hair is so much darker than your other kids!"

I almost spit out the water I was sipping. And started laughing.

So you'd think I would have explained... "Well...um... We adopted her from China"

Nope.

All I could muster was...

"yes (long dramatic pause), it is."

Wednesday, April 13, 2011

The REAL face of...

....of special needs.

I don't know about you...

but all I see a busy toddler...

with laughter and giggles...

and a scrunchy face grin...

and absolute BEAUTY.

The Real Face of Special Needs

Monday, April 11, 2011

On Adoption...

I'm reluctant to write this post. But, the truth is... there are a 147 million orphans worldwide... and therefore 147 million reasons why I must. So, jumping out of my comfort zone. I will write.

First, I will say. I KNOW adoption is not a good fit for every family. I get that.

But, if there is just one person out there reading this blog that's heart is calling them to adoption but the voices of fear flood the brain and won't let you move forward.... this post is for you.

Before we had children, S and I have talked about adopting. But, it was along the lines of "wouldn't it be cool if we could do that"... just like "wouldn't it be cool to buy a villa in Italy" or "wouldn't it be cool to travel all around the world".

And then we watched the miracle of adoption unfold in the lives of people around us. The thought of these children living without parents, without medical treatment, without love.... made our hearts break. Our hearts were torn open for the orphan.

BUT, what would our families' think? do we have the energy? do we have the space in our three bedroom/one bathroom ranch home? is it "fair" to the other children? what if we can't afford vacations anymore? what if we can't afford all that we WANT? and of course... WE DON'T HAVE THE MONEY!

Trust me. We didn't have the money. Not too many people have $25,000 sitting in the bank just to spend on a whim. We really didn't have it. Some may say we made an irresponsible decision to move forward. Many would disagree with how we proceeded without all the resources.

But, we just knew.... deep in our heart... we simply must. Our family was not complete. We had so much more love to give. And there were 147 million reasons on the "pro" side of the equation... and only two or three reasons that seems awfully selfish on the "con" side.

And yes, we'll be a bit squished in our house. But a child will HAVE a home. And NO, we might not have fully-funded college accounts for our children. But, our children will be offered an education. And this I can guarantee... we will LOVE. Oh man... how we will love. (we had yet realize HOW MUCH we would love).

God has provided for our every need. Both financial and emotional. Without much asking... people gave to us so much. They gave us their support. But, they also gave to us financially. God also taught us the art of saving. We saved. And saved. and "sacrificed"... although to say that "no we won't go out to dinner tonight" is a sacrifice seems rather odd when you think about how selfish that really is. We worked extra jobs and saved every penny.

Every dollar of the adoption expenses was provided for.

And as I look at our little girl playing with Mr. Potato Head on the floor next to me... oh man... how can I express or gratitude. She is the biggest most amazing blessing in our lives. Some say "she is lucky".... which I have to admit, drives me a bit crazy... LUCKY? hardly. But I digress.

WE ARE LUCKY!!! No... we are BLESSED. Beyond words. I'm not sure why God picked us as Grace's parents. But, I know we don't deserve her.

And that leads me onto my next rambling idea here...

I think people look at us and think about how we are somehow more equipped to handle this than themselves.

We are NOT angels. Oh goodness no!

We mess up ALL. THE. TIME. We yell, we scream, we get annoyed at our kids, we get frustrated with them, sometimes I sit at the computer and write blog posts while letting my kids watch TV for an hour. YUP. I do. My house is a mess. My bathroom is gross. I can't keep appointments straight. And I rejoice for Monday morning when two of my four children get on a school bus. Whew.

Trust me. We are NOT anything special. We are parents that stepped out in faith to love a child. We are parents that even though it "seemed" that there was so much going against us, we decided to do it anyway. Despite the looks of fear on family members faces. Despite awkward silences when people heard our big news. Despite one bathroom. Despite a less than full bank account. We stepped out in faith. And it was SCARY! But, we knew this was what we were being asked to do. We could not turn our backs.

My point is. If there is just one person out there reading this... that is thinking all these things.

YOU can do this. Through God all things are possible.

If there are others out there that want to do something... but adoption isn't that right fit for your family.... There are other ways to help orphans both here in the US and worldwide.

Sponsor a child. Give to an organization that is helping orphans. Support another family who is trying to adopt. There are countless ways.

There are 147 million reasons why you should.





Thursday, April 7, 2011

Baptism!

I find that important events are hardest to find the words to blog about. So here it is Thursday, and I have yet to post about Sunday. A beautiful, amazing day.



Grace was baptized.



Grace became part of God's family.



And since I just don't have the words to express my thankfulness for this beautiful day and the beautiful people in our lives that stood by us these many months... and stood by Grace on Sunday....

I'll just post pictures.











Thank you God for baptism. Thank you God for entrusting us with your daughter, Grace.

Sunday, April 3, 2011

Another First

Well... in was inevitable. When you have four kids... someone is gonna get hurt.

I'm just glad it wasn't worse. It could have been worse. Much worse.

It's "just" broken.



No stitches necessary. and it wasn't severed. that would have been bad.

One little person accidently closed (read:slammed) the door with Grace's finger in the jam.

Ouch.

Said little person felt really, really bad.

So, first trip to the ER for Grace.

First broken bone in our family.

I'm sure it won't be the last.

So, she's sportin' a nice white splint today... for her BAPTISM! At least it will match.