The Chupp Chronicles

#2 and #1

2012-02-18T07:01:00.000-08:00

James lost his 2nd tooth about two weeks ago and Jack lost his first tooth a week ago yesterday. I was a little late taking these pictures (the boys desperately needed a haircut) but for both boys, their new tooth started coming in before they lost the baby tooth. So, Jack missed out on having the BIG, empty gap in his mouth.

The tooth fairy is making out like a bandit these days.

Golden Gators

2012-01-28T15:25:00.001-08:00

The boys were selected as "Golden Gators" for the 3rd 6 weeks. A "Golden Gator" is a student that is a model for other students in their class. We found out later that Lauren was also a "Golden Gator" for her class for the 3rd 6 weeks. Big day for the Elsberry grandkids!

The boys were SO proud of themselves.

Mrs. Dindot, the boys teacher, read why their classmates said they should be golden gators.

"Jack is a great friend to everyone, he’s a good listener, he always helps and always follows directions on the rug."

"James always follows directions in the classroom and in the hallway. He is nice to everyone and he always listens to the teacher. He is also a great helper during center time."

My favorite parts from the video . . . When Jack walks up to the podium and looks over at us and after Mrs. Dindot read what his classmates said about him and he did the awkward gator clap. I laugh everytime!

Just a little bit longer to donate to the American Heart Association. Go here to donate to James' and Jack's Jump rope for Heart day at school. They are almost half way to their goal!

American Heart Association

2012-01-23T17:38:00.000-08:00

James and Jack are SUPER excited to participate in the American Heart Association's Jump rope for Heart program at their school. When they found out that the money they raise will go toward helping babies like Caroline who were born with heart defects, they couldn't wait to get started. They think that they can raise $200 together. Will you support them? They "jump" on February 17th and all proceeds go directly to the American Heart Association.

Click here to visit their personal page.

Our Christmas vacation

2012-01-14T16:29:00.000-08:00

Our Christmas vacation started a little early. We headed up to Indiana to celebrate the life of Jesse's grandpa Chupp.

We were so thankful that Caroline got to meet her great grandma and great grandpa Chupp this past summer. Great Grandpa Chupp was an amazing, God fearing man and we are so glad we were able to be with all the Chupps as we celebrated his life.

(two Christmases ago)

The next week was spent with Grandma and Grandpa Chupp. There were a lot of stories read,

a fishing trip,

a first snow,

board games,

tractor drivin',

and even a bonfire.

We always have so much fun when we go to the Chupps!

The next week, we went to my parents house. My favorite picture of the trip was taken there. What a sweet face!

The boys and uncle Paul wasted no time and were absolute BFFs! They think he is the coolest dude ever! We went to see The Adventures of Tintin.

After Christmas Eve service (where the boys got to participate in the live nativity), we opened our Christmas Eve pjs.

(that face is what every parent hopes for when their child opens a present :).)

VERY excited for Santa to come!

Christmas Morning . . .

That face again!

Yes, it was a cooking set! The boy LOVES the foodnetwork!

And this one was very excited about the Darth Vader helmet. Caroline wasn't as excited as Jack was!

The Puckett's flew in on the 26th and we got to do Christmas all over again.

We celebrated our Christmas with everyone on Tuesday morning. I woke up to Jack yelling, "Mommy!
It's a white Christmas after all!!!" So sweet!

We got all bundled up and went to play in the snow before presents. Turns out Papa was the all time snow ball fight champion when he was a kid.

He was a pro!

Then back inside for MORE presents!

After presents, it was still snowing so we went back outside for a photo op. I love these pictures!

All the kids got these awesome guns from the Pucketts. They had a blast playing with them. Lauren is NOT playing around!

The last few days of the trip were spent at Jesse's sister's house. Caroline loved hanging out with her uncles

and her cousin Anna who is one of the most awesome kids I have ever met!

She's trying really hard not to be jealous of cousin Lily!
Jack was in hog heaven with all the babies he got to hold!

We got to spend a couple hours with Jesse's Grandma and Grandpa Schrock.

Grandma and Grandpa Schrock with all the Greg Chupp grandkids.

And this picture was on the last night in the hotel room. No bathtub and a desperately needed bath . . .

We packed a lot in to three weeks! We had a GREAT time but we were SO ready to be home!

Lost Tooth

2011-11-13T07:50:00.000-08:00

We lost our first tooth in the Chupp house!

James came to me about a week ago and said there was something wrong with his tooth. I knew they would probably start losing teeth during their kindergarten year but was a little surprised that it would be this soon. It was very loose Thursday night and I was afraid he would lose it at school and really lose it. So, I tried to pull it out myself and am proud to say that I think I might have traumatized him just a little. I'm not allowed to get near his mouth for a while :)! Needless to say I couldn't get it out.

This is how it happened in his words . . . "Okay, when we comed in from recess, we all got a drink, then we sat down and I got a drink, and then it popped right out. I showed my friends and then I went to the nurse."
The tooth fairy might have left 8 quarters under his pillow but it's hard to know for sure because he immediately put them in his piggy bank after he found them. Not sure where he gets his saving money mentality from. Definitely not from his parents.

Halloween 2011

2011-11-02T15:56:00.000-07:00

The boys have had Mario Brothers fever for the past year. When they play the video game, they call themselves the Mario Bros. "Jack! Quit throwing me off the cliff! We are the Mario Bros! " So, it was fitting that they be the Mario Brothers for Halloween and Caroline had to be the mushroom.

There is no such thing as a Mario Brothers mushroom costume in Caroline's size so I called in the BIG GUNS and had my mom make this FABULOUS costume. Didn't she do a fantastic job?

She even dyed the shirt and made the pants. We got a lot of compliments on this little one!

And these boys were a big hit too.

Sunday night we went to Trunk or Treat at my church with my sister and her family.

We weren't sure what to expect. It was very Fall Festivaly and there were tons of games for the kids to play.

They had a blast!

And then we dressed up again for the big night.

I wonder why Caroline's thumb is securely lodged in her nose?!?!?

Half way through trick or treating!

So tired after a fun night!

Already starting to wonder what next years theme will be . . .

James -, Caroline - , and Jack-O-lanterns

2011-10-28T18:25:00.001-07:00

Yes, I've used that title before. But, I think it's cute so I'm going to keep using it.

And here are last years pumpkins. Wow! What a difference a year makes!

Firsts

2011-10-22T16:06:00.000-07:00

We have had a very busy start of school. With the boys well into their kindergarten year, I finally understand how parents with school aged children feel. Busy, busy, busy!

A lot is going on in the Chupp house! The boys LOVE school. Their teacher said that Jack "has a heart of gold" and James "is a great role model for his classmates". They are both well on their way to being good readers and they love, love, love to learn.

And, miss Caroline is doing great! She has had a lot of "firsts" in the past couple of weeks. She is eating solids like a pro! She ate a whole cheese sandwich today. She is getting very sassy. She wants what she wants and she will NOT tolerate not getting it. And, the BIG one . . .

She is standing! Love this picture! She, however, does not love doing it but we try to practice a lot.

Sweet baby girl!

With the weather being so much cooler we have been spending a lot of time outside.

I think these two are the real twins!

You can get a good view of her new hand in this picture. Plus I think it's cute that it looks like Jack is showing her something.

And we went to the park today. I think this is the first time Caroline has actually "played" at the park. Do you think she liked it?

Any chance she looks happy in this picture? This is a good example of the sass I was talking about. She makes her opinion known!

And her latest first . . .

She swung on a swing for the first time and LOVED it. I think she would have fallen asleep if I would have let her.

Hoping for many more "first" in the coming months!

What a difference a year makes!

2011-09-04T18:18:00.000-07:00

First day of school

2011-09-01T18:27:00.000-07:00

It's so cliché but I have to say . . . Where has the time gone?

This literally seems like a few days ago . . .

And now, they are big Kindergartners! They were so excited on the first day of school . . .

The first two weeks have been really good. Their teacher told me they are "super sweet" and she loves having them in her class (what a relief!). Waking up early has been the biggest adjustment. Three days in James exclaimed, "NOT AGAIN!!!!" when I woke him up. But they really, really love it. They have asked if they can spend the night there and every weekend can't wait to go back on Monday.

And then there's this one . . .

She spends a lot of her time these days doing this . . .

She can feed herself now. That was a really big development. She also loves picking things up and dropping them - so fun!! She is in a lot less pain with her hand and the bandage is scheduled to come off and pin out on the 12th. From the looks of it when we have been changing the bandage, this seems really hard to believe but here's to hoping!!

Time to celebrate!

2011-08-27T17:40:00.000-07:00

**Normally it would have taken me a little longer to post about Caroline's birthday but I just had to move down those hand surgery pics!**

I'm not a big birthday party thrower. In fact, the boys have never had a formal birthday party! But, it just didn't seem right to let Caroline's birthday come and go without a little hoopla. So, we decided to throw a little shindig! We were fortunate to have a houseful of friends and family. The little kids swam and the big kids had a lot of great conversation. It was truly the perfect way to celebrate a fantastic little girl!

It took a little convincing for her to dig in to her cake. She didn't want to sit in her seat let alone play with a cake.

Once she tasted it though, she was hooked! Looks like Jack is a little envious :)!

She got a ton of awesome gifts! She is going to be the best dressed little girl this fall!

And then after presents, she decided to stand for the first time. That was pretty awesome!!

Super fun cousins doing the robot.

And then . . . she conked out!

like completely out! She was pooped!

Hand Surgery - Graphic

2011-08-24T17:52:00.001-07:00

Shortly after Caroline's status changed from critical to stable last August at Dell, the neonatologists told us they were going to ask for a hand plastics consult to look at what could be done about Caroline's hand. At the time, we thought they were nuts. After everything she had been through, why in the world would we want to put her through anything else? There just happened to be a hand specialist employed by the hospital so we thought it was at least worth looking into. We didn't even know what was possible.

When we met with him, he explained that he could give Caroline a thumb using a procedure called Index Pollicization. He explained that he would move her index finger into the position of the thumb. After he talked about it and what it entailed, I asked if we could choose not to do it. At the time, this seemed very unnecessary given everything else being done that was very necessary. He of course said "yes" but asked me to think about what I could do without a thumb; all the things I wouldn't be able to pick up. We had plenty of time to decide; we wouldn't even think about a date until all of her other issues had been taken care of and we would see him when she was almost a year.

So, needless to say, we decided she would thank us later if we went ahead and had the surgery done. She had the procedure the day before her birthday, August 11th. I have never heard of a doctor taking pictures during a procedure and sharing them with the family (taking pictures, yes. sharing with the family, no!). But, this one did and while they are a little graphic, I am glad to have them. If you don't want to see the inside of her hand, don't scroll down :)!

This is was her hand right before the surgery.

The skin pulled back to expose . . . everything! The dark red is muscle and the thin white lines are nerves.

To make her index finger the size of a thumb, they took out the middle section of the 2nd proximal phalanx bone (the long bone on the index finger) and fused the top and bottom of that bone together. This picture shows the section of the bone that was removed.

A pin is currently holding the bones in place until they heal together.

We were really pleased and surprised with the way it turned out. It actually looks like a thumb!!

After the surgery, hospital staff surprised Caroline (and the rest of us) with a big cake and cupcakes to celebrate her birthday the next day. She wasn't exactly excited by it . . .

The procedure was out patient and she left with coban wrapped around her and and up to her elbow. Jesse took her back to Austin this past Monday for a check up. The doctor was very pleased when he took the bandage off. We were originally told that the first bandage would be replaced with a splint but he ended up wrapping it again with a smaller wrapping. We think she likes it a lot better because her little fingers are exposed.

Unfortunately, with this one, we need to rewrap it ourselves every 2-3 days. We are going to do it for the first time tomorrow and I am a little nervous.

She goes back on September 12th. At that visit, the doctor will take the pin out and she should have a completely usable thumb!!

on loan

2011-08-11T23:55:00.000-07:00

I can't tell you how honored I am to be this little girl's mommy!

We found out Caroline was a girl on Thursday, April 1, 2010. I was always the person that said she wanted all boys so it was quite a shock to my system when I was over-the-moon excited to find out I was having a girl.

The next Monday, I got an urgent call from my doctors office saying my doctor wanted to see me right away to talk about the sonogram. I asked repeatedly if something was wrong and the nurse just kept answering that it was normal for the doctor to want to go over the sonogram results. I knew this wasn't true after having so many with the boys with no scheduled follow-up. He was gracious enough to start with, "I'm going to get right to it . . ." and started talking with me about his concerns. He explained the things he saw (or didn't see) and was very honest about the directions things could go in. He made it very clear that when I went to see the doctors in Austin, it was possible they would try to talk to me about having an abortion and I needed to be ready to respond.

When I got home, I broke down like I don't think I ever had before. Because I had a miscarriage before, I was pretty guarded about the pregnancy and didn't let myself get excited . . . until I found out we were having a girl. Then I couldn't help myself. I had started to dream about what it would be like to have a little girl with dirty blond ringlets running around the house. I was already certain that she would be a tomboy just like me.

I didn't want the boys to see me upset so I went and took a shower. I sobbed and sobbed and sobbed. Halfway through my "breakdown" I VERY clearly heard a voice say to me, "She was never yours to keep!" and I said out loud standing there in the shower, "I know, I know." I knew that whatever was going to happen with Caroline, I was supposed to trust that God was in control and had a plan for her. She is a child of God and He would use her to HIS glory!

But . . . I'm human . . . and it was really, really hard!

I have always prayed for God's will to be done. I try to not ever pray, "God, take this disease away from someone" or "God, please make this situation easier." I know that God has a plan and can dream bigger than I can. But this time, I pleaded . . . "Jesus, I want to learn this lesson you are teaching me! I want to learn it! Please Jesus, if there is a way I can learn it without this sweet baby having to go through pain, PLEASE Jesus, let me learn this lesson another way!"

Caroline's birthday is hard for me. I look at her and I see Jesus's reflection. But, on her birthday, I also feel the pain of almost loosing her. I can still see Jesse walk in the recovery room and tell me that she had more issues than we expected. I can still feel the fear I felt when I read that she had a 25% chance to survive. I can still see her lying in a bed with a dozen machines around her keeping her alive. I still feel the panic of waking up from dreams where I knew I had lost her. The pain is still very fresh.

Caroline's chest contains many, many scars. For my eternity, those scars will be reminders that GOD chose to breathe life in to this amazing child. He chose to use her for HIS glory. HE chose to save her!

Psalm 139:13-16 For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made.Wonderful are your works; my soul knows it very well. My frame was not hidden from you,when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

Grandma and Grandpa Chupp Camp

2011-08-06T07:39:00.000-07:00

While I was away at a conference, Jesse flew by himself with the three kids to Indiana. I can't even imagine how tough that must have been. I can also not describe how much fun they all had. Jesse was in heaven being with his parents and the boys literally felt like they were at camp.

Jesse's mom made sure that the boys had activities to do at all times! They rode on Grandpa's tractor . . .

went fishing . . .

rode bikes . . .

learned how to ride a bike without training wheels . . .

and learned some super fun tricks from Uncle Matt!

They even got to take their nightly baths in grandma and grandpa's huge jacuzzi tub.

Aunt Hannah with baby Caroline. They hit it off right away.

Grandma Chupp made some homemade cupcakes to celebrate Caroline's first birthday.

and got the boys some glow-in-the-dark glasses. So fun!

Caroline did a great job trying to eat the icing.

Caroline loved the extra attention!

The day before we left, we went to Goshen to visit Great Grandma and Great Grandpa Chupp and many other members of the Chupp clan. Boy did they love to love on Caroline. She was very happy to get loved on too!

a year (+) in texts

2011-07-24T16:44:00.000-07:00

I was waiting for my plane to Chicago to take off and decided to pass the time by cleaning out my text messages. As I was reading through them, I quickly was reminded how rough the past year has been. I had to stop reading them for fear of freaking out the person next to me with full out sobbing. The texts definitely paint a vivid picture. I don't want to ever forget what we have been through and want to be grateful everyday for what we have.

These are text messages that I sent to friends and family starting with texts about the sonogram that started it all . . .

March 25, 2010
Good doctors visit. Sonogram on April 1^st.

April 1, 2010 10:48 AM

Sono today. Feeling really nervous for some reason.

(between these dates, we were feeling strongly like Caroline wouldn't make it and I wasn't communicating very much with anyone. Toward the end of April, we found out that she should survive but would have many complications)

May 10 2010 3:20 PM

Had a good visit. She pretty much has the same problems as before but is developing well and on track. We go back to meet with the cardiologist on the 26^th so he can determine the severity of the heart problems and where I need to deliver. The doctor didn’t think from what he saw that there would be any mental retardation issues and most things could be fixed with surgery. No “incompatible with life” phrases thrown around today!

May 26, 2010

Praise God! The cardiologist said the heart looks very close to normal and should be able to deliver in College Station! They think there is a small hole that may need to be closed surgically when she gets older! Nothing urgent at all!!!!!

June 23, 2010

Great Austin doctor’s visit. They couldn’t see any fluid in the chest and thought they saw the stomach for the first time!

July 1, 2010 2:34 PM

Good visit with the kidney doctor. If it is what they think it is, they won’t need to remove it.

August 2, 2010

Date set . . . The 12^th at about 1.

August 11, 2010

C-section moved up to noon.

August 13, 2010, 10:44 pm

Procedure going well. There are about 20 doctors/nurses working on her.

11:46 pm

Procedure done. We just got to see her and she is doing well.

August 14, 2010

Doing good here. Had a good night. They have been so accommodating. They even brought me a hospital bed and a breakfast tray. We are sleeping right next door to Caroline and she seems to be handling the machine well. She has three nurses just for her basically at her bedside.

August 15, 2010 2:37 PM

Sorry for the lack of updates. The reality has started sinking in and I have been pretty emotional. We have actually gotten some encouraging news though. The boys are here now and are doing really well, They got to see Caroline and handled it like pros.

August 16, 2010 7:49 PM

We got Caroline some animals to help keep her company today.

August 17, 2010 9:13 AM

I posted to my blog yesterday and will try to update everyday. Your prayers are coveted!

6:50 PM

The nurse just said that Caroline opened one of her eyes! She moved her hand a little bit when I was touching her earlier too.

August 18, 2010 9:39am

Looking at surgery possibly later today. More info to come. Please pray!

1:32 pm

Been on the trial run off ECMO for an hour and 10 minutes and all her levels have stayed high.

2:26 pm

Two hours off ECMO and going strong. Looks like they will be taking the canulas out. Praise God! Please keep praying!

The ECMO tech said last night, “I’m no prophet but my stay ends tomorrow and I’ve never left a baby on ECMO!” He said he can tell after the first 30 minutes of a trial run and he is certain she will be coming off.

2:49 pm

The nurse just came in. They’re cutting the tubes.

3:14 pm

Surgeon said she looks so good he doesn’t see any reason to wait on the surgery. Hasn’t made the official call yet but he said probably in the morning.

August 19, 2010 6:44 am

Looks like surgery will be at 8

10:26 am

Out of surgery. She did great!

11:07 am

She is back in her room. ECMO tech said in her 20 years of doing her job she has never seen a patient do this good.

August 21, 2010 10:05 AM

Jesse talked to the NICU doctor last night. The doctor thought she could be off the repirator in 5-7 days. Home in three weeks from now. He said they probably wouldn’t let her go back to the med because of possible surgery issues.

12:27 PM
Doc just came in and said she could be off the vent within a day or two.

She would still need oxygen support but just the little tubes in her nose.

1:04 PM

Hello everybody!

August 22, 2010

Caroline just got some milk for the first time, an arterial line taken out and I might get to hold her in about an hour! A great day!!!!

August 23, 2010 10:28 am

Happy Monday!

August 24, 2010 6:54 PM

Extubating any second now.

7:43 PM

Here’s my pretty face! Doing well so far!!

August 24, 2010 7:47 PM
And already going to town on a passy!

August 25, 2010 9:27 PM

Another great day! Ready for bed!

August 27, 2011 2:51 PM

Caroline just took her second bottle of the day. Didn’t need to be tube fed at all.

8:55 pm

August 30, 2010

How cute am I?

August 31, 2010 10:17 Am

Doing a trial off oxygen support. Will keep you posted.

2:40 PM
Didn’t do great on the trial off. She’s back on but with less support.

4:52PM

As long as we get the go from the case worker (insurance stuff) Caroline will be moving to the med Thursday morning!!!

September 6, 2010

Good Morning! Happy labor day!

September 9, 2010

Somebody likes her bath. We’re having a really good day!

8:03 PM

She was off heat and held her temp good. Got to give her a real bath for the first time – loved it. Good feedings. You can tell they are prepping me for taking her home – having me give her some of her meds and food through the tube.

September 13, 2010 12:12 PM
Looks like the NICU here worked something out with the ambulance company and they are going to wave the transport cost. As long as insurance will pay for the med hospital stay, we may be going home as early as tonight.

3:54 PM

Good to go! They’ll take her in the morning!

6:19 PM

Papers are signed. She’s leaving at 8:30 in the morning. We still haven’t decided if we are leaving tonight or in the morning. We have A LOT of packing to do.

September 15, 2010

Having a good day!

September 16, 2010

September 17, 2010

Going home possibly as early as Sunday! I’ll keep you posted!

September 19, 2010 2:26 PM

Now we MIGHT be able to take Caroline home tomorrow. I’m going to stay with her tonight and try to get her to eat good.

September 19, 2010

September 20, 2010

We’re on our way to get her!

October 17, 2010

My pumpkin!

October 30, 2010

Game day baby!

November 6, 2010

Caroline just laughed for the first time!

November 8, 2010

Have you seen a cuter baby?

December 21, 2010 9:03 PM
We can now roll to this position from our back!!

January 29, 2011 1:01 PM

Headed to the emergency room in Austin with Caroline. Showing signs of heart failure and the cardiologist wants to see her now. Not sure if this means surgery soon or not. Please keep us in your prayers.

3:02 PM

We’re at the hospital and checked in. They rushed us right back even though there are about 50 people in the waiting room in front of us. Will keep you posted.

January 30, 2011 9:49 AM

Had a pretty good night. She was very tired and slept most of the time. Still haven’t seen the cardiologist but the attending pediatrician said she is going to talk to the cardiologist about having the surgery or putting her on medication that they would want to observe her on for a while.

1:25 PM

I’m in CS getting the boys and some other things together. Jesse saw the cardiologist and he said he doesn’t want to do any procedures unless he absolutely has to. Thinks she is still to small. They uped her acid reflux medicine and want to watch her for another day. She is doing really well in the hospital. No more episodes and really happy. Everyone that comes in says that they have never seen such a smiley baby.

5:28 PM
Caroline’s cardiologist decided he wants to do the catheterization on her in the morning. 7:30.

January 31, 2011 7:32 AM

She’s back and we’re in the waiting room. Will keep you posted. Should only be 30 minutes or so.

8:54 AM

We got a call about 20 minutes ago that they just got in – her heart that is. They said they had trouble getting access due to all the things done to her in August/September. Hopefully she will be done soon.

Docs just called again and said they’re still working. Not sure why it’s taking so long.

9:56 AM

She’s out. Doctor said she did good. Thinks they’ll do the repair in the next month or so. There should be a lot of information still to come.

February 1, 2011 9:41 AM

Cardiologist just said she might have the repair as early as Feb 15^th. They’ll decide at a meeting this Friday.

February 4, 2011 9:54 am

Just got off the phone with one of Caroline’s cardiologists. She said the group agreed that she needs the repair as soon as possible. We will go see the surgeon Monday and set the specific date and time.

February 6, 2011 1:27

Just got off the phone with Dr. Fox – the surgeon that was going to do Caroline’s repair. He said her case is to extraordinary to do in Austin and is referring us to a surgeon in Dallas. He said this could add 1 – 3 weeks to the date of the surgery.

February 8, 2011 9:39 PM

Thanks for the prayers. Glad she’ll be in a hospital that can better take care of her needs but it makes me nervous that they’re nervous.

February 11, 2011 10:16 am

March 8^th is the new date for the surgery. She had a blue episode this morning and is very irritable again so hopefully we can get it moved up.

February 15, 2011 9:24 PM

Sometimes we forget Caroline is a baby. Looks like her irritability, not wanting to eat etc is teething! Awesome!

March 5, 2011 6:52 AM

Open heart surgery Tuesday to repair the hole. Leaving tomorrow for Dallas after church.

March 7, 2011 11:01 AM

We’ve had a sedated Eco, EKG, and xray. Blood work, preop nurse and surgeon still to go.

9:02 PM

We have to be at the hospital at 5:30 am. I appreciate the prayers greatly. Pray too that I won’t be a basket case. I can feel it bubbling up!

March 8, 2011 8:04 AM

Just left her. Preop should be about an hour and a half.

9:25 am

The surgeon just started

10:25 am

Been on bypass for 30 minutes

11:18 am

Done! Apparently the surgeon is coming to talk to us.

3:15 PM

The nurse just said, “She’s rockin’” They keep turning her meds down.

10:43 PM

She’s opening her eyes and looking at us. Taking a pacie. Extubating in 20 minutes.

1:25 PM

Successfully extubated! She seems very comfortable.

March 9, 2011 8:43 AM

Chest tubes coming out.

2:59 PM

Gradutating to the 8^th floor.

4:26 PM

Doctor just said we might be discharged as early as Friday.

March 10, 2011 9:16 AM
Doctor Forbess was just here. He said try for home tomorrow, OFF O2!

8:59 PM
Somebody missed her chair!!

March 11, 2011 8:09 AM

Nothing for sure yet but probably won’t be going home today. Her Eco showed fluid around her heart and she isn’t eating well.

9:19 am

Back to probably going home today. The cardiologist came in and said the fluid is very common and nothing to worry about. Just going to watch her eating today. Might get to go home this afternoon if she eats well.

9:56 AM

Seems back to her happy self!

3:10 PM

Looks like we’re getting discharged. We are going to stay at rmh tonight so we are close in case something happens and so we don’t have to drive in the dark. Thanks for your prayers!

7:26 PM

Discharged and at rmh for the night. Headed back to CS in the morning. Caroline seems very happy to be out of the hospital. Still on oxygen but the cardiologists think she just needs a couple more days.

March 18, 2011

Bathing beauty!!

March 19, 2011

March 25, 2011 7:24 PM
Pretty cute!

April 6, 2011

Oh, so sleepy!

May 8, 2011

Working on eating table food.

June 20, 2011 1:46 PM

Looks like hand surgery early august. It should be outpatient and the doctor thinks she will easily transition to her new thumb.

July 22, 2011

The first of her First Birthday celebrations. She LOVES cupcakes apparently.

A family vacay at the river

2011-06-26T19:35:00.000-07:00

My parents came down to Texas and met us and my sister and her family at the Nueces River in Camp Wood, Texas. We had an amazing time being outside, playing baseball, playing in the river and spending time together. The last time my parents saw Caroline, she had just had her heart surgery and I believe was still sedated so it was a big change for them to see her now.

Might be my favorite pic from the trip . . .

The boys' new favorite thing to do is play baseball. They were naturals at it.

Caroline's first time in a kayak.

Just having a little convo with Aunt Jenny.

The kids couldn't get enough of the river. Note to self . . . reapply sunscreen when you are out in the sun for several hours. We all ended up a little crispy!

Here's to you, Lauren!

Just two girls sitting lady like!

Gigi got some quality Caroline time! I love that Caroline looks so chunky in this picture. She isn't but it's fun to pretend.

First picture with all the grandkids. What a great little vacation we had!

A little catch-up and some visitors

2011-06-18T12:38:00.000-07:00

With physical therapy and occupational therapy every other week for Caroline, she is making great progress. She can almost sit-up completely by herself, is trying to grab things out of her reach, is eating baby food like a champ, and is a pro at rolling over. We have an appointment with the plastic surgeon on Monday about her left arm. We're anxious to know what comes out of that appointment.

Jack got his tonsils out last week. It was more rough on him than I thought it was going to be and his voice going up an octave has taken some getting used to. It's hard taking him seriously when he sounds like he has been sucking on a helium balloon. James has had a hard time sympathizing with Jack. He keeps saying, "He doesn't feel that bad!"

Cooper had his 3rd birthday party at the Children's Museum a couple weeks back and the kids had a blast!

Yes, Jack is scanning a pear!

A little unsure of silly uncle Robert.

Jack watching Lauren on the space TV.

Caroline got to meet Aunt Stacey for the first time. They connected right away.

My best friend from College, Rebecca, and her kids stopped by on their way to Mexico. Although Caroline freaked out at first at the prospect of new people being around, she adjusted quickly and Rebecca and Caroline got some great bonding time.
Rebecca's son, Isaiah, was born a couple months before the boys. It's not everyday that we get to play with another 5 year old that is the same size as Jack and James.
Caroline slept in her real bed in her own room last night. I really intended for her to sleep next to me for the rest of my life so I am a little sad that she did so well. She's been napping in there too. I walked in earlier and found her sound asleep like this . . .

Is that not the cutest thing you have ever seen?

And, I feel two bottom teeth coming in. Should have some cute first teeth pictures coming soon!

We've been working on a couple things!

2011-05-18T19:35:00.000-07:00

Caroline started Physical Therapy and Occupational Therapy about a month ago. She had her first real sessions last week and we have been given lots of activities to do with her. Jesse has been really good about working with her throughout the day and she has made great progress. The occupational therapist was very impressed last week with how much she had already changed from her initial evaluation to her first session. They are working on her arms and the physical therapist is working on getting her gross motor skills up to date.

I came home today and found out that she is now able to roll over!

In the video, we are working on two things: Caroline successfully rolling over and the boys successfully working the video camera. James kept treating it like a regular camera and kept turning the video off right when the action was happening. We had to practice with the camera quite a few times. Caroline was getting a little annoyed!

James' Video . . .

Jack's Video . . .

Easter

2011-04-24T16:43:00.000-07:00

We had a wonderful Easter weekend! Everyone got over their respiratory infections just in time to have a jam packed three days.

Caroline has been so happy. She is off all monitors and oxygen and is practically a completely normal baby now.

Ready for an afternoon of errands!

For some reason, we have never dyed eggs in the Chupp house. I decided this year was the year to start. These are our finished products. Not bad for our first time!

Easter morning. She is so happy when she wakes up.

The boys weren't really about their Easter baskets this year. I made the mistake of saying, "You know, the Easter Bunny is kind of like Santa Claus." I think they were expecting more than what they got. Jack looked at his basket and said, "I want to go back to bed!"

James' face is saying, "Why do you keep taking my picture?!?!" Jack's face is saying, "I know I look cute!"

They LOVED the tie!

It's hard to get a good picture of Caroline so you can get the full effect but I can assure you, she looked BEAUTIFUL!

Sometimes, she looks at us with this look and you can tell she is thinking, "Do you people know what you are doing?"
This is the first picture of all the cousins. Pretty cute bunch!

The annual Puckett/Chupp Easter egg hunt. It's pretty competitive!

Five!

2011-04-17T17:11:00.000-07:00

My sweet little babies just turned 5!

How is it possible that 5 years have gone by so quickly?

Everyone says, "Savor the moment because it will fly by!"

or "They grow up so fast!"

But you don't realize just how quickly they really do grow up . . .

until you look up one day and see these faces looking back at you . . .
and you can almost see in their eyes the men they will become!

Happy Birthday James! Happy Birthday Jack! You will always be my little babies!

Hoping time slows down for this one . . .

I like these pictures!

2011-03-28T19:14:00.000-07:00

This is what happens when a soccer coach asks her 4 year old players, "Who wants to play first?" . . .

Why do they look like young adults in this picture? Makes me want to cry!

Sweet baby girl! I love that you have the Joy of the Lord!

Happy St. Patrick's Day

2011-03-17T20:09:00.000-07:00

Caroline is doing great off oxygen! We basically take her off when she is awake; back on when she's sleeping. Each day her sats have been higher and higher. She seems to enjoy the freedom as much as we do. We ate dinner tonight on the back patio; wireless baby and all!

Off Oxygen?

2011-03-16T20:01:00.001-07:00

I took Caroline off oxygen tonight to try eating some solid foods (not that one has to do with the other; just makes it easier). She didn't do so great at the solids but she is doing great at being off oxygen. So far she has been off for about an hour and is keeping her sats up! Boy is she cute :)!

By the way, at Ronald McDonald House, each room is sponsored by a family or organization. This is who sponsored ours . . .

God pays attention to details :)!

One week Post-Op

2011-03-15T12:54:00.000-07:00

How is she different? In every way possible! You can't even imagine.

She is hungrier, more alert, more engaging! She even burps, toots, and poops better! Literally, every part of her that requires blood flow (every part of her) is better! Her smile is bigger and her laugh is louder. She now gulps when she eats - didn't even realize that she didn't do that before. Her coloring is a little more pink but the poor baby isn't going to be able to overcome getting her mothers coloring. She is stuck being fair complected.

She's still a good sleeper but I'm not sure we are going to be blessed with that much longer. With her increased appetite, she is wanting to eat earlier and earlier in the morning. Pretty much every morning so far she has wanted to eat an hour earlier than the morning before.

She is on a new medication called Sildenafil. I am proud to say that this is Viagra! This is significant because it is very hard to get. We had to wait 3 days to get insurance to approve it and therefore had to pay cash for a 5 day supply - Viagra isn't cheap!! This is supposed to do the same thing as being on oxygen so she shouldn't need it much longer. She is on a very low setting so hopefully she will be off within the week. I have been weaning her everyday but she is still showing that she needs it; especially at night.

It's hard to believe that just a week ago we were sitting with her in the Cardiac ICU. Can't wait for the incision to completely heal and the steri-strips to come off! She is still pretty bruised from all of her IV's. She had one in each hand, one in each foot, and one in her neck. We go tomorrow morning to get her sutures out where her chest tubes were. Hopefully, this won't be a big deal. We see her cardiologist next week for an Eco to make sure everything is as it should be.

The Surgery

2011-03-08T14:08:00.000-08:00

One last picture of her chest without the big scar. You can barely see her scar from the hernia repair. Hopefully her heart repair scar will be this light soon.

In the car on the way to Dallas. She loved getting to play with her brothers.

In Ronald McDonald House before our long day of tests Monday. She just discovered her feet a couple weeks ago.

She wanted so badly to grad her feet while she was getting her blood drawn on Monday. We had to hold her arms down though so the tech could get a good draw. No problem for this baby, she just brought her feet to her hand.
We arrived at admissions at 5:20 am, got registered shortly after 5:30 am, and were taken back to pre-op by 6:30. The anesthesiologist took a little longer to get ready than they anticipated and our 7:30 start time got a little delayed.

In Pre-op just before they took her back. Just as happy as ever!

Caroline fell asleep in my arms (after playing sweetly in my lap) as we waited for her to get taken back. Because she was asleep, they allowed me to carry her back to the Operating Room (or as close to it as a parent can get). What a horrible feeling it was to let her go . . . sleeping peacefully, without a care in the world.

We were told that the surgery would take 4 to 5 hours.

We got a call around 9 (I think - all running together now!) saying that all preop was done and the doctor was ready to begin. We got a call around 10:00 that she successfully went on bypass at 9:53 and the surgeon had started to repair the hole in her heart. We got the last call at 11:15 saying the surgery was complete and the surgeon was coming to talk to us. Beginning to end - less than three hours. Yet again, our expectations are exceeded!

We were able to see Caroline as she was carted from the OR to her recovery room just for a brief second. It took about an hour and a half to get her settled in her room.

A sight I am way too familiar with

They thought she might need nitric oxide to keep her oxygenation levels up but she didn't. They told us that she would be sedated and intubated for 24 hours. The plan is to extubate her in about an hour - she has been breathing on her own for an hour now.

If the extubation goes well, we should be able to start feeding her sometime tonight. If she continues to do as well as she is now, she should get most of her IVs out within the next day and will be moved off of the Cardiac ICU. Please pray that she continues to do well.

What a miracle this little baby is.

An army!

2011-03-08T12:48:00.000-08:00

Our sweet Caroline and my family have had an army by our sides today. What a blessing it is to be surrounded by such faithful people who will take the time to pray for us. After we left Dell, I wished I had compiled all of the scripture that was sent our way. I couldn't let the moment pass this time.

Here is some of the scripture and prayer that were sent to me today:

"Know that the God that SPOKE the universe into existence is going to sustain you today!"

"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength." Isaiah 40: 28-29

"Do not be in dread or afraid. The Lord your God who goes before you himself will fight for you . . ." Deuteronomy 1:29-30

"Jesus Christ is the same yesterday and today and forever." Hebrews 13

"Then your light shall break forth like the morning. Your healing shall spring forth speedily, and your righteousness shall go before you; The glory of the LORD shall be your rear guard." Isaiah 58:8

"Praying for Caroline today for a successful surgery and a quick recovery and for God's peace to be on you and Jesse, James, and Jack and Family. For God is able to do exceedingly abundantly above all that we can ask or think according to the power that works in us."

"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God." Psalm 43:5

"Those who wait in the Lord will not grow weary, they will mount up like eagles!" Isaiah 40:31

"I will say to the Lord, He is my refuge and my fortress, my God in whom I trust." Psalm 91:2

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Phil 4:6, 7

"Cast your cares on me." 1 Peter 5:7

"For where two or three are assembled in My name, I am there among them." Matthew 18:20 "We are assembled here lifting your family up in prayer. As the bible says, God is among us." (love that one!)

"For God has not given us a spirit of fear, but of power and of love and of sound mind." 2 Timothy 1:7

"The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures. He leads me beside quiet waters, He refreshes my soul. He guides me along the right paths for His name's sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23

"My grace is sufficient for you. My strength is made perfect in weakness." 2 Cor 12:9

"Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you with My righteous right hand." Isaiah 41:10

"Stand still and consider the wondrous works of God." Job 37 :14

"Lord, you give true peace to people who depend on you, to people who trust you."

"For with God nothing will be impossible." Luke 1:37 "The things that are impossible with men are possible with God." Luke 18:27

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

"Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken." Psalm 55:22

"Every word of God is flawless; He is a shield to those who take refuge in Him." Proverbs 30:5

"15-18We look at this Son and see the God who cannot be seen. We look at this Son and see God's original purpose in everything created. For everything, absolutely everything, above and below, visible and invisible, rank after rank after rank of angels—everything got started in him and finds its purpose in Him. He was there before any of it came into existence and holds it all together right up to this moment. And when it comes to the church, He organizes and holds it together, like a head does a body.

18-20He was supreme in the beginning and—leading the resurrection parade—He is supreme in the end. From beginning to end He's there, towering far above everything, everyone. So spacious is He, so roomy, that everything of God finds its proper place in Him without crowding. Not only that, but all the broken and dislocated pieces of the universe—people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of His death, His blood that poured down from the cross.

Colossians 1:15-20"

"Right now, while you are just focused on your daughter, take time to rest at the feet of Jesus and rest in Him. Nothing special...He knows what is going on and desires a great deal to carry your worries. He is absolutely in control of all things going on around you right now, so just rest in Him. Kind of like Mary...Luke 10:38-42...just rest."

"Sarah - I have been in prayer for you and baby Caroline for a long time but today I got down and dirty with heaven. Know that you are lifted up often. HE is good and HE is loving and HE will answer our prayers. "

"Caroline - tomorrow is your big day and I am praying for your little heart. I know God has been with you all along and He will never leave your side. I pray that He continues to hold you in His arms as you go through this surgery and that He heals your heart through the surgeons hands tomorrow without any complications. You are such a beautiful, giggly girl and I know you will wake from surgery with a smile for your Mommy and Daddy. You are also such a strong baby and I know that strength will carry you far. I will also be praying for your Mommy, Daddy, James and Jack; that they can be at peace as you are placed in the surgeons arms tomorrow. God is good and while He protects you, He will protect them also. I can't wait to hear the good news tomorrow Miss Caroline. Get your baby rest today because tomorrow, well tomorrow is going to be an amazing day and I thank God for all He is doing."

" Dear Jesus -
We lift baby Caroline up to you now. I pray that you will keep the Surgeon's hand steady and sure, as he is the one chosen to fix her little heart. God, thank you that you have such big wonderful plans for Caroline and you have already used her to touch so many. Thank you that she has no idea what is going on and that you will protect her and keep her safe during this four hour period. She is in your hands.
Bless Jesse and Sarah tonight as they anticipate this big day. I pray that they will be able to rest in you and that their sleep will be sound and uninterrupted. Be with their spirit, Lord. Help them to completely rest in you, knowing that you are in control of everything. Thank you that just as Sarah has stated that she loves having a confident doctor, Lord, we have complete confidence in you. You are amazing and we thank you in advance that we can trust you completely. Thank you JESUS. We love you!

AMEN!”

“I thought of your sweet Caroline. I said a prayer for her, her medical team, and the rest of the family. You all have gone through so much but a reassurance came over me that the Master has a plan. I offered a prayer of thanksgiving for blessings already given and asked that He would continue to give you strength and peace. I eagerly await the news that all has gone well and you all will be back home soon! I send you my prayers and my love!

Wednesday marks the beginning of Lent...a time to focus on the suffering of Christ; but with this remembrance also comes the anticipation of the resurrection. A miracle at the end of great tribulation. I promise to pray earnestly during this holy season that the Lord of Easter will send special blessings on His and your sweet baby.”

"How precious to me are your thoughts, God. How vast is the sum of them! Were I to count them they would outnumber the grains of sand" Psalm 139:17-18

"You, Lord, give perfect peace to those who keep their purpose firm and put their trust in you." Isaiah 26:3

"The Lord is my helper; I will not be afraid." Hebrews 13:6

"Praise the Lord, O my soul, and forget not all His benefits -- who forgives your sins and heals all your diseases! He will heal Caroline!"

Thank you to everyone who has lifted up our family and Caroline. In the words of one of my sweet friends, "You've got lots of people covering those docs in prayer and petitioning for protection for your baby. I bet it'll be hard for them to move around in that room because it will be so full of the Spirit and of angels!"

One of the amazing things - I don't think I got a duplicate scripture all day! So powerful! Thank you Jesus, for allowing us to rest in You!

Big day tomorrow

2011-03-07T16:05:00.000-08:00

Caroline's surgery is tomorrow morning at 7:30. We would greatly appreciate your prayers. While we know it is necessary for her to have this done, it breaks my heart to see her go through it. It is hard to wrap my mind around the thought that someone will be looking at my daughter's heart - hearts aren't meant to be seen!

We met the surgeon today. He is clearly one of the best. I told Jesse, "I like confident doctors!" although I'm not sure they come in another variation :)!

They told us that the surgery would last about 4 hours and they will probably keep her sedated as long as she is intubated which will be about 24 hours. If she extubates successfuly, she should be able to be home within 7 days.

Will you pray for our sweet Caroline? Pray that the surgery is a success, that her lungs will tolerate the stress and that she will extubate successfully. Pray for the surgeons and all persons dealing with her. Pray that she will be a light to them as she is to everyone that meets her.

"The Lord will fight for you. You need ONLY be still."

First Soccer Game

2011-02-26T12:12:00.001-08:00

This is Jack celebrating because they just scored a goal . . . on their own goal.

The boys were a little bummed that they didn't get to play the whole game.
Cooper took advantage of halftime for a little practice.

Soccer

2011-02-23T19:29:00.000-08:00

FINALLY! Jack and James are on a soccer team! I have been wanting them to play soccer since they were born and we finally get to do it.

They are so excited too but are a little unclear about they process. They don't understand the whole "practice" thing - well, Jack doesn't. He thinks they should just get to go and play. So, the first practice was a little frustrating for him.

Playing a name game to get to know their teammates.

We're just slightly bigger than the other kids!

Their first game is this Saturday! We can't wait!!

Baby feet

2011-02-18T17:50:00.000-08:00

What is it about a baby's feet?!?

Oh, so sweet!

It seems like the plan changes everyday!

2011-02-12T18:49:00.000-08:00

We thought we were on for a February 15th or 16th surgery. We were planning on meeting the surgeon on the 7th to discuss the surgery but he called on the 6th to tell us he wasn't comfortable doing the surgery. He explained that the repair was an easy one; he wasn't worried about that. "There is nothing like a heart surgery to really test the lungs!" and Caroline's lungs have already been through a lot. He wanted her to be in a bigger hospital for her recovery.

Jesse and I both felt like the wind had been taken out of us. It was a strange feeling. Of course we wanted her to be where she would get the best care but hearing that a surgeon was concerned about her recovery was very unsettling. On top of that, we have now been told from 3 cardiologist that she needs to have her heart repaired as soon as possible and the surgeon said that this change could add one to three weeks to her surgery date.

We have been working closely with our normal cardiologist to get things moving in a timely manner but when we hadn't heard from the new Dallas surgeon by Friday, Jesse started making calls. The new plan is to have the surgery in Dallas on March 8th. As long as Caroline stays health, that plan shouldn't change.

We are having issues with her feeding again. The doctors feel confident that it is acid reflux and have changed her medicine. She just started the new dose yesterday and has already done a little bit better.

Praying for an uneventful three weeks!

It's On

2011-02-04T13:30:00.000-08:00

One of Caroline's cardiologists called this morning and said the group decided that Caroline needs to have her heart repair as soon as possible. Because Caroline's repair is not a normal case, they are scheduling it around a specialized surgeon from Dallas who comes down to Austin twice a month. The next step is for us to meet one of the surgeons on Monday in Austin. Hopefully we will get specific details about what the surgery is like and what the recovery process is.

We would greatly appreciate your prayers for Caroline, prayers for the surgeons, prayers for the surgery, and prayers for peace. You know my apprehension about being in the hospital so please pray for a quick recovery.

Yes, my soul, find rest in God; my hope comes from Him. Truly He is my rock and my salvation; He is my fortress, I will not be shaken. My salvation and my honor depend on God; He is my mighty rock, my refuge. Trust in Him at all times, you people; pour out your hearts to Him, for God is our refuge.
Psalm 62 5-8

We're Home!

2011-02-01T15:38:00.000-08:00

After just three days in the hospital, we are back home. It's a strange feeling being in the hospital now. We are so nervous that we are going to be there for a long time. You feel so helpless. It's a horrible feeling having to ask another person to get your daughters formula . . . having to ask if you can hold your daughter.

But, hopefully, this will all be over soon. The cardiologists are meeting Friday and they are proposing that she have her repair on February 15th or 16th. The decision will be made by the group. I am terrified that my baby will have to go through a surgery like this but if that is the path God has chosen for us, I know it is the path we must go down. We're not sure what she will be like after the surgery. Will she become a perfectly pink, chubby baby that eats more than 3 ounces at a time? Will she be off oxygen immediately? Will her breathing stop being so labored? Will she continue to be a perfectly happy baby no matter what is thrown at her? Only God knows and only time will tell!

So, we wait until Friday . . .

An update

2011-01-31T13:32:00.000-08:00

"In this world you will have trouble, but be brave! I have defeated the world!" ~ John 16:33

Saturday morning found us concerned about Caroline. Her cardiologist warned us early about signs that her heart was failing . . . Trouble eating, sweating when she was eating, increased irritability. By Saturday morning, these things had been happening for a couple of days. On top of that, she was having episodes where she would get inconsolably upset for no apparent reason, would turn bluish purple and would seemingly pass out. This had actually been happening for a while but the episodes were getting closer and closer together.

We called our on-call nurse who in turn called the doctor and suggested that we call our cardiologist. Both doctors wanted us to come back to Dell right away.

We dropped the boys off at my sister's and away we went - packed for a week, just in case.

When we got to the hospital, Jesse went in to register us while Caroline and I stayed in the car. We try to keep her away from as many germs as possible and a children's emergency room, as you know, is full of them. When I came in, there were probably 50 people waiting to been seen in front of us. Unfortunatly (or maybe fortunately), Caroline started having an episode (screaming, coughing, turning blue, not breathing) as soon as we entered. They rushed us immediately back.

The nurse said to me, "Is she normally that pale?" "No", I replied, "She's usually more pale than this!" I think that startled her a little bit.

They immediately started an IV, drew blood for tests, did an ecocardiogram, and an xray. None of these tests showed anything particularly alarming but they decided they wanted to keep us overnight.

The doctor Sunday morning was concerned that her symptoms were being caused by her pulmonary hypertension and was going to talk to the cardiologist about doing her heart repair during this stay.

Her on-call cardiologist did not want to do anything - no change in meds, no catheterization, no repair. He thought that she was still to small and he saw no reason to chance it. Her regular cardiologist decided that it would be a waste of a trip to not at least do the catheterization. So, this morning, she had the procedure done. She went back at 7:30 and we were told that it would be about a 30 minute procedure. At about 8:30 we got a call that they just made it to her heart - they had trouble getting "access". The rest of the procedure took about an hour and by about 10:30 I was able to see her. She was definitely not herself. Although she had a reason to be fussy, it was very hard seeing her this way . . . knowing there wasn't much I could do to fix it.

She seems back to her normal self now. Very smiley and flirty with everyone that comes in. Everyone that sees her comments on how smiley she is. One nurse said she couldn't remember the last time she saw a baby as smiley as Caroline.

We should get a report from the cardiologist soon about his findings from the cath. He told us this morning right after it that the repair would be in a month or so. It's scary to think it will be so soon but we are happy at the prospects that we could have most of this behind us soon.

Hopefully we will get to go home tomorrow . . .

Apparently, she likes to be called "Silly".

2011-01-24T17:05:00.000-08:00

Oh, I do have some crazy boys!

2011-01-24T16:50:00.000-08:00

A wireless bath

2011-01-15T18:24:00.002-08:00

Caroline can tolerate being off her oxygen for a fair amount of time so I decided to give her a wireless bath.

I think she thought I was crazy at first!

Trying to persuade her that it was awesome!

She came around!

Birthday Party Fun

2011-01-15T18:24:00.001-08:00

We got invited to the birthday party of some of our favorite people!

With one of the birthday boys and another one of our favorite people

The boys LOVE birthday parties!

And cake!

Our Chirstmas Break

2011-01-01T09:07:00.000-08:00

We have had a very good, relaxing, Wii filled break. We decided to get a Wii the first couple days of the break and have had fun getting to know how to work it. The boys love Super Mario Brothers and we have stayed up late many nights trying to beat the Boss!

Early morning round of golf!

Caroline started doing this. Pretty exciting!

Our Christmas Eve present. Every year it seems like it is a surprise.

Oh my goodness! It was PJs!

We discovered how much Caroline likes having the boys sing to her. It is nice when she is fussy to be able to say, "Boys, sing to your sister." She calms immediately :)!

Christmas morning! Santa was good to us this year! The boys got new headphones in their stockings. Jack insisted on wearing them while he opened his presents even though he wasn't listening to anything.

They love their cars!

My parents and brother came on the 27th. It was so nice to have them here and get to hold Caroline and play with the boys.

Christmas with the Elsberrys on the 28th. The cousins were so excited to get yet another Christmas.

Cooper is waiting super patiently for his turn to open his next present.

We went ice skating on the 28th. The boys weren't sure about it at first.

They had these cones that they could push around to stabilize themselves. Jack kept saying, "This sure is slippery!"

Mom and Dad are natural born ice dancers :)!

Great big brothers!

New Years Eve. A friendly game of bowling amongst the cousins.

And a New Years toast between brothers. These are their Great Grandpa Taylor's champagne glasses. Here's to hoping 2011 is better than 2010!

We had a good visit with the Cardiologist on Wednesday. He was very please with how Caroline looked. He said there is no need to do the Catheterization any time soon (we were thinking it would happen in early January). She is doing so well, he doesn't want to see her again until mid February.

So far . . .

2010-12-28T19:41:00.001-08:00

. . . this is my favorite picture of the holiday season.

Oh, I do LOVE Christmas!!

2010-12-08T18:37:00.000-08:00

and my children seem to love it as much as I do. Well, at least these two so far.

Caroline will learn to love it as much as we do.

She already has that sweet innocence and perpetual joy. She is such a reflection of Jesus and His grace! What a blessing she is!

Unfortunately, Jack and James seem to love this part of Christmas the most . . .

I have been trying to teach them about the true meaning of Christmas. I definitely need to do a better job.

Oh, how I do love these Christmas tree pictures. I look forward to taking them for many, many years.

Some, medical updates . . . Caroline's cardiologist seemed concerned about her progress the last time we saw him. He wants to do a catheterization to check the pressures in her heart. This will be an inpatient procedure and will likely be sometime in early January. He also thought that her heart surgery would be sooner rather than later. Our next appointment with him is at the end of December so we will know more dates in a couple of weeks.

She had an appointment with the genetics counselor, nephrologist, and surgeon a couple weeks ago. They were all in Austin right across from the hospital where Caroline stayed. They were all pretty uneventful. It was pretty surreal being back there though carrying her in her carseat across the parking lot to visit the doctor instead of walking across the parking lot to go to her NICU room to visit her. She has come such a long way in a couple months. So many reasons to praise HIM this holiday season!

Bow head

2010-11-13T20:52:00.001-08:00

Never thought I would see the day when my daughter would have a bow on her head the size of her head. She looks pretty cute though!

Cardiologist appointment this week. Surgeon, nephrologist, and genetics counselor next week.

Halloween 2010

2010-10-31T18:47:00.000-07:00

Lauren had the great idea that all the cousins go as the Incredibles family this year. They were a hit for sure!

Skyping Gigi and Papa before we headed out

Before . . .

At one house, the four of them went up to the door and when the lady opened it, she loudly said, "Oh my goodness, Get out of here!!!" James immediately took off running! Definitely the highlight of the evening.

After

My favorite picture of the night!

5 Halloweens

2010-10-31T18:30:00.000-07:00

The ONLY picture from Halloween 2006. Man, was that a crappy night!

Halloween 2007

Halloween 2008. The cutest cowboys I have ever seen!

Halloween 2009

Halloween 2010

Can't wait to see next years pictures.

Game Day in Aggieland!

2010-10-30T12:23:00.000-07:00

Another go at pumpkins

2010-10-29T18:18:00.000-07:00

Our pumpkins from last weekend deteriorated quickly so Jesse decided to carve our other three with the boys today.

This time, Caroline got in on the action!

Jesse's finished products . . .

Pumpkins

2010-10-24T18:53:00.000-07:00

Pumpkin carving 2010

Nothing like wrestling in the yard while the pumpkins get lit.

Update

2010-10-23T11:28:00.001-07:00

Since my last post, we have seen Caroline's cardiologist, pulmonologist, and pediatrician. She has gained about a pound and a half and is doing really well. She seems like a normal baby, is staying awake more, is more active, and has had a little bit of colic. That part hasn't been very fun but it is nice seeing her with some "normal" baby behaviors.

She is still on oxygen and will probably remain on it until her heart surgery. We got a little more information about that this week. They thought for a long time that she might have a double outlet right ventricle. I don't really understand what that defect is but it is certainly nice to know she doesn't have it.

So now, we are just dealing with the VSD. I found this picture which shows what the defect is. I think Caroline's is probably even larger than this one.

I asked the doctor if there is anyway that the hole would close on its own and she wouldn't have to have surgery. He said he has seen it happen so that is what we are praying for. Will you join me in that prayer? Wouldn't that be amazing if God closed the hole without surgery!! If she does have to have surgery, we are praying that it is a planned surgery (her heart doesn't fail suddenly) and that her heart will hold until early summer - well after flu season.

This picture shows two things: How much Caroline loves her brothers and how pale she is. The paleness is one of the side effects of her condition. We don't really notice it unless she is close to someone super tan like James.

Thanks for keeping up with us. We feel blessed everyday to have such an army of prayerful friends and family standing with us.

What a journey!

2010-10-02T13:24:00.000-07:00

Happy Birthday Caroline!

4 days old

1 week

2 weeks

3 weeks

4 weeks

5 weeks (at the Med)

6 Weeks

7 Weeks

So HAPPY to be home!

Some pictures from our two weeks home

2010-10-02T12:47:00.000-07:00

We have had a pretty good two weeks home as a family of 5. Caroline is a great baby and LOVES being home as much as we LOVE having her home. She has seen her pediatrician twice and the cardiologist once in the past two weeks. The cardiologist said that he wants Caroline to stay on oxygen until she has her heart surgery. It is a little unclear when that will be. He wants her to be above 11 pounds but being above 11 pounds doesn't mean she will have the surgery. Basically, they are waiting on her heart to show signs of failure. It sounds bad, I know. But, it isn't that bad. She will show signs of increased fatigue, sweating (because her heart is working so hard), and not eating well. We have experienced the fatigue and the not eating well although I am sure it could be much worse and will get much worse.

God definitely knew what He was doing when He gave this little girl these issues. When babies have a diaphragmatic hernia like Caroline, the lungs are under a tremendous amount of stress. Many babies have just a bud for a lung because it never developed due to the other organs in the chest cavity. Nurturing and growing the lungs is usually the longest and hardest part of the healing process. As you know, Caroline also has a VSD, Ventricular Septal Defect. One of the side effects of having this heart defect is that the heart takes on some of the work of the lungs which is a blessing for a baby that needs her lungs to get extra support. Amazing!

Here are more pictures from our time at home . . .

Our first ride in the stroller - a trip to the park!

The timing was right for the first televised Aggie game. Caroline needed a bath and her cannula pads changed so I decided to get some "First Aggie Onesie" pictures with nothing on her face. So cute! (Don't worry, I had the monitor on her the whole time so I could tell what her stats were)

Just hanging out!

My first week back at school was great. It was awesome to see all the staff and students. What a blessing it was to be able to go back knowing that Caroline was home and doing well. For a while there, we felt we were really close to facing the reality of me having to go back to work with Caroline still in Austin. It is amazing to see how God worked it all out!

I snuck a picture!

2010-09-23T20:29:00.000-07:00

After Caroline's bath yesterday, we needed to change the pads on her face that hold the cannula in her nose. So, like any good mother would, I decided to take the opportunity to take her picture with NOTHING on her face. Yes, friends and family, at 6 weeks old, this is the first time I have seen my daughter's complete, unobstructed face (I did see her when she was first born with nothing on her face but, let's face it, I was pretty drugged and don't really remember)!

So, who do you think she looks like? Here are pictures of James and Jack at 6 weeks old.

James

Jack

Jack and James - 7 Weeks (notice Jack is doing the Wreckin' Crew)

Feels like I waited my whole life for this one night!

2010-09-20T19:28:00.000-07:00

So much to share . . . so little sleep!

Oh what a day! Seems like we have waited forever for today but it is unbelievable that we have come so far in just five and a half weeks.

We finally got the word that we would be discharged today at about 10:00 am. Jesse started making doctors appointments while I took Caroline's prescriptions to be filled. Of course, the drugs she is taking aren't super common so there was some concern about when they would be available. This delayed us a little bit but we were finally able to start the discharge process by about 1:30.

(This isn't a scream - just the beginnings of a yawn. She was actually really content in her seat and on the ride home.)

There were so many things the boys wanted to do with her. They definitely made up for lost time today.

Caroline got to meet Buckle!

She got to sit in one of her fabulous seats!

She got to cuddle up to Mommy and Jack on her very own couch!

She got to be held by James!

and by Jack!

and she got to have a bath in her BIG bath tub!
Jack and James were such big helpers. Jack finally got tired of helping her with her pacy and just put it in her hand.

Oh, So happy to be home!

Thank you all for being so faithful to our family throughout this journey! We have a long road ahead of us with this beautiful miracle baby but we know we can face all things through a little faith, a lot of prayer, and an army by our sides! Thank you for standing with us!

Back in the Brazos Valley

2010-09-17T19:03:00.000-07:00

The past week has been action packed! After a frustrating weekend where we thought we would be in Austin forever, the Doctor surprised us Monday morning saying that Caroline could be transported the next morning. Apparently they had been working on it for a while and weren't sure if it would workout so they didn't want to tell us yet. Fortunately, the ambulance company agreed to wave the fee of the transport. Otherwise, we would not have been able to be moved! Another one of God's miracles!

Jesse, the boys, and I packed up as quickly as we could Monday evening and left for College Station by 10:00 pm. Caroline left in the ambulance Tuesday morning. The boys were more excited waking up in their own beds Tuesday morning than they were on Christmas morning.

After about 12 hours of recuperating from the trip, Caroline started showing she really wants to come home. She started eating all or most of her bottles and is doing really well on her oxygen.

Today, the hospital staff started making plans for Caroline to come home as early as Sunday. When they started making the list of the things that needed to be done, it was clear it was going to take more than a couple days to get everything together. So, now it looks like Caroline will come home Monday. We are meeting with the Home Medical people tomorrow. They will get us set up with the equipment we will need for Caroline to be on oxygen here at home.

Thank you so much for all of your continued prayers and support! You can see God's hand in every aspect of Caroline's BIG life!

Please pray for us in this transition home!

Our first family picture

2010-09-10T18:07:00.000-07:00

Yes, this is our first picture with all of us together.

Just the boys, Jesse, Caroline and me . . . and Tyrell Higgins, defensive tackle for the Texas Longhorns. You can tell Jack is thinking, "Um, are we supposed to be taking a picture with a Longhorn? I'm not sure about this!" It was so much fun for them and an honor for him to visit. He was very respectful! He is also a starter so look for him on the field tomorrow! The boys and Jesse went down to hang out with about 8 more of the players right after this. They even tried to make their hands "Hook 'em". I think they started spasming though.

Caroline had another great day. She was off the heat all day and was able to maintain her temperature. If Jesse can get her to take both of the next two bottles tonight, she will be at 86% for the day - the most she has ever taken by bottle!

I forgot to say yesterday that she was having her MRI last night. They decided to go ahead and do it to make sure there wasn't a reason with her brain as to why she wasn't able to hold her temperature. We got the results this morning - Unremarkable! Music to my ears!

Just for fun, the first picture at the top of the post was taken by the Child Life employee at the hospital with her camera. This is the one taken with my camera . . .

Looks like I have passed on my photogenic nature to my boys. Not sure how my sister and brother are so incredibly photogenic and most of my pictures look like the above!

Stuff happening these days

2010-09-09T18:03:00.000-07:00

Strangely, days go by really fast around here. I suppose that is true anytime you are on a pretty tight schedule - even though the schedule often entails sitting and waiting until the next feeding or next time for meds.

I got down a couple days ago because of the lack of any progress. The first two weeks of Caroline's life were full of forward progress. One constant was that she would beat the odds. If they told us something would happen in two weeks, it would actually happen in one. If they told us something would happen early next week, it would happen before the end of the current week. The surgeon said she would regress before she got better after her surgery but we never saw anything but forward progress. This continued through her move back to the NICU. She got extubated earlier than we thought and were able to start feeding her earlier than we thought.

Lately though, it has seemed like we are stuck. She is hanging on to her oxygen support like Linus hangs on to his blanket. Here's an example:

This is how her canula was for about an hour earlier this week . . .

Her sats stayed at 100% for the entire time. Seems like a good time to try her without it right? We take it off and she immediately drops down into the 80's. The doctors don't want her below 92% so back on it goes. Today, we decided to do another room air trial. When the nurse took her canula off, she decided not to take it completely off but to turn the pressure off - the canula was down around her neck. Again, her sats dropped into the 80s. As the nurse started putting her canula on, I noticed that her sats started increasing immediately but the nurse hadn't turned the oxygen back on. Her oxygen saturation got back up to 100% with the canula on but the oxygen off. WHAT? We noticed that while she turned the pressure to ZERO, there were some tiny bubbles in the . . . thing (I don't know what it is called - whatever the thing is that sends the oxygen through the canula). So now, instead of giving her 1/16 of a liter of support, they are giving her 1/32 of a liter of support and her sats are staying at 98-100%. So frustrating but she is making it very clear that she still needs that support. It seems to me though that she just likes having the tubes on her face! Jesse thinks it must have something to do with her heart and not her lungs. We'll talk to her doctors about that possibility. What that would tell us is that she will need the oxygen support until she has her heart surgery.

Her feedings started to seem like they were regressing as well but she has done so much better the past two days. She took 4 full bottles yesterday. That is the best she has done.

We decided to give her another chance to maintain her temperature by herself today and she did really well. This became a pretty big issue for us. While she could go home on oxygen support and with a feeding tube, they would not let us take her home if she wasn't able to maintain her temperature. BIG blessing that she did better with her temp today.

They are clearly prepping us to take her home. Today, they had me give her a bath . . .

She LOVED it. I clearly have a water baby on my hands. This was her first time to be IN the water.

They also had me give her some of her medicine for the first time and feed her through the feeding tube for the first time. Jesse, the boys and I (yes the boys too) are signed up to take a CPR class on Monday. Apparently this is something you have to do before you can take them home.

I also got a list of her million specialists that need follow-up appointments scheduled before we can go home. This is on my To Do list for tomorrow.

So, please keep praying for us. It really is starting to seem like our homecoming is right around the corner.

As I said earlier, a couple days ago I got down about our situation. The boys could tell I was sad and asked why. I told them that I was sad because I wanted to take Caroline to our house. James patted my stomach and said, "But Caroline's house is in your tummy!" Not sure if this should make me happy because it is such a sweet, innocent thing to say or sad because I still look like I am carrying a full term baby! In all seriousness, when I was very down, I was reminded by a GREAT friend about God's timing. She reminded me of how important it is to know that God has it all worked out and we just need to have faith. Faith that He has plans for us. I decided to start reading through the gospels again praying that I would find hope in our situation and this verse immediately jump out at me.

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33-34

I am so stubborn (I know, brand new information!). I have a tendancy to get lost in what I want and have a need for things to work out exactly as I envision. When things don't go exactly as I want them to, I tend to get frustrated . . . mad . . . irrational. Just imagine me sitting with Caroline in her NICU room saying, "Caroline, wake-up and take your bottle. Please, Caroline!" Why doesn't she do what I ask her to do? God's timing, Sarah, remember it is in God's hands! I constantly need to be reminded of how far she has come in her BIG life so far.

A few prayer requests:

Please pray for us to focus on Today. Jesse is much better at this than me so feel free to focus the majority of that prayer on me :). Please continue to pray that Caroline will do well maintaining her temperature. Please pray that she will no longer need her 1/32 of a liter on oxygen (still infuriating to think about - how could that little make a difference?). Please pray that she will continue to do well on her feedings. Please pray that she will no longer have the episodes of SVT (fast heart rate). Please pray that we will be able to go home soon . . . I am scheduled to go back to work in about 10 days!

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

A kiddy park roller coaster

2010-09-05T08:51:00.000-07:00

Having a baby in the NICU has been compared to riding a roller coaster. We have definitely felt this way both emotionally and through all the physical trials that Caroline has been through. Take for example talking with the doctor at any given time. It often sounds a little something like, "Well, Caroline isn't holding her temperature which we would expect from a premie. Since she was full term, we are a little puzzled by it. Do you remember hearing her cry loudly when she was first born? No? Well, I was noticing that her cry was really soft too and she seems to be very mild mannered. This in conjunction with her not holding her temperature could be a sign of a neurological defect. She is doing great and looks great though! She should be able to go home soon. Congratulations!". Me in response, "Wait . . . What?"

Jesse and I have been taking turns sitting with Caroline since the boys are here with us now. Both of them have coughs so they aren't allowed to come see her (we got it checked out by a doctor and it is allergies but they want them to stay away until their symptoms are gone). Because of this, I am often by myself when the doctor comes in. Jesse would know how to decode all the doctor speak but I am always left wonder what is routine and what is something to be concerned about. You never know if the doctor is just "covering all the bases".

She is doing really well though. People always comment on how much better she looks when they come in after not seeing her for a couple days. She got bumped down again on her oxygen support. They have put her on a level of support that we could go home on if needed. Her sats have been 99 and 100 all day though so I think they are going to try a room air trial again later today or tomorrow. This is just where they take away her oxygen support to see what she does.

She is also doing well on her feedings. I think she is probably somewhere around 80% of the feeding goal. She has been waking up hungry now which is so much easier than waking her up to feed her.

Caroline has had a couple more bouts of tachycardia (heart rate in the 240's). She has been able to take herself out of them though so the doctors and cardiologist aren't concerned. We aren't sure yet if this will stop after she has her heart surgery.

So, yes, having a baby in NICU is like being on a roller coaster. Because our days are pretty calm now, just monitoring her feeds and oxygen support, I feel like we are on a kiddy park roller coaster. We haven't had anything happen that has been life threatening for a couple weeks but everytime I hear the monitor beep, I wonder briefly what might be wrong and will the doctors and nurses be able to fix it. Makes me nervous about taking her home and not being able to look at a monitor to tell quickly if she is okay or not.

Please continue to pray for our family. Pray that Caroline will do well on the room air trial and that she will continue in her stamina with feedings.

Nope, not home!

2010-09-02T20:09:00.000-07:00

We seem to be in a constant communication circle with the insurance company. It doesn't look like they will pay for the transport back home. Jesse and I are okay with it though. We decided to bring the boys to Austin to stay with us. We just couldn't stand to be away from them so much.

Caroline is doing amazingly well and I am confident that we will be home-home very soon. She did so great with her feeds today; she is making great progress. She had almost all of her milk by mouth - very little had to be fed to her through the tube. You can tell she is really getting the hang of it.

She is also doing well on her oxygen. I talked to the Respiratory Therapist tonight and he is going to work extra hard on getting her weaned. It seemed like we kind of stalled on that front. Not because she wasn't tolerating it but because other things seemed to be at the forefront of peoples minds.

We have been having fun dressing her. I didn't get to take any pictures today but will hopefully tomorrow.

Going Home . . . Kind of . . . Maybe!

2010-08-31T17:43:00.000-07:00

Oh yeah baby! I'm wearing a pink Giraffe print sleeper!

After our weekend with the boys, Jesse and I were really feeling the need to be back home with them - we just can't stand being away from them this much (although my mom is doing an awesome job with them and deserves a medal of honor, or something more appropriate for unexpectedly parenting two four year olds)! So, we talked to the doctor Monday morning about the possibility of being transferred back to the Med if it didn't look like we would be able to be home within the next week and a half. The doctor definitely felt our urgency. Within the last two days, Caroline has seen 8 specialists to "tie up loose ends." Yesterday, she saw the eye doctor, the surgeon, and a plastic surgeon who is a hand specialist. Today, she saw the nephrologist (kidney doctor), the surgeon, a different plastic surgeon, the physical therapist, and the occupational therapist. That was all before noon today.

The eye doctor yesterday said that everything looked good with her eyes - all good optic tissue. The surgeon yesterday took out her central line - last thing poking in her. The hand specialist said that Caroline is a candidate for an operation called index pollicization. This is basically where they take the index finger and make it into a thumb. This wouldn't happen until she is at least one if we decide to do it which we probably will. If we leave her hand the way it is . . . well, just imagine you don't have a thumb and you'll understand the need for it. The nephrologist wanted to do a kidney scan that evaluated whether or not she had urinary reflux. Basically the same as acid reflux but for the kidney (urine going back into the kidney instead of in the bladder). The ultimate goal is to ensure that we keep her one good kidney in good working order. She had that procedure today and we will hopefully know the results tomorrow. The second plastic surgeon looked at the bone structure around her eyes and determined that everything looked normal but it is really to early to tell. We will have an appointment to go back to him in a couple of months. The physical therapist looked at her range of motion throughout her whole body. We haven't gotten to talk to her in depth yet but it seemed from the exam that the only concern is in her left arm which we already knew. The Occupational Therapist helped us with her feedings. It is very common for a baby who has been through so much to have trouble feeding. Especially babies who have been intubated. In extreme cases, they can be terrified of having anything down their throat. We had a very good session with her but Caroline isn't doing great with her feedings. Fortunately, she has all the mechanics down, we just need to work on her stamina.

Caroline also had blood drawn today to use for genetics testing to hopefully figure out why she has the defects she does. We probably won't know anything about that for a couple weeks.

The only thing that we haven't done now is had a MRI. Although Caroline has had many head ultrasounds that came back normal, they would like to do an MRI in a couple months that would check to see if there was any brain damage from being on ECMO.

Now, really the only thing the nurses are doing for her here are giving her meds, monitoring her oxygen, and helping to work on her feedings. These are all things we could easily do back at the hospital at home. SO, the doctor came in today around 4:00 and said that she thought Caroline could be transferred as soon as Thursday morning. The only thing we are waiting on is our case worker to figure out if the transfer is covered by insurance and if it isn't how much it might cost us. The doctor said that in some cases, if they have jumped the gun, not only is the ride back not covered but the hospital stay back home wouldn't be covered. We obviously don't want that and will hopefully know more tomorrow what the insurance situation will be like.

Please pray that everything will get worked out. To be home home, Caroline will need to be completely off oxygen and feeding 2 ounces by mouth every three hours. To just get back to the Med, we need everything with our insurance to work out.

It is amazing to me that we are even talking about these possibilities already . . . Thank you again for your prayers, love and support!

A weekend of visitors

2010-08-29T20:59:00.000-07:00

We had a great weekend! Got to see our boys and had many visitors. I felt like a normal new mommy showing of her beautiful new baby for a bit. It felt like a very normal day with my sister talking about getting a pedicure with her new neice, my brother-in-law talking about taking a nap with his new neice, my mom crying as soon as her new grandaughter was in her arms, my great friend Lindsay talking about taking Caroline to the lake, and my great friend Lisa talking about getting Caroline some Bling! Yes, it felt like a normal day! Hopefully we will have one of these "normal" days in our own house very soon!

Caroline is doing really well. They are trying to tie up all loose ends so we can hopefully go home by the end of the week. She got the IV out of her hand yesterday and should get her central line out today. That will mark the very last thing poking in her skin. She is still on oxygen but is on very little support. She is completely on my milk now! The eye doctor was in earlier and said that her eyes are normal. I love hearing doctors say "normal" . . . We should be getting visits from the kidney doctor and the Physical Therapist soon. Hopefully, if all of these doctors sign off, we will be heading home soon! Please pray for that to happen. We are missing being with our boys daily terribly. We want Caroline to be ready though so please pray that she stays strong and continues to progress as she has.

Great Progress!

2010-08-27T19:27:00.000-07:00

Today was full of great progress. We tried Caroline on a bottle for the first time, again, just to see what would happen. She of course took it like a pro. The nurse said, "Let's give her about 20 minutes and if she doesn't do well, we will give it to her in her feeding tube." Well, in typical Caroline style, she was finished with the entire bottle in 7 minutes flat and was asking for more. As of right now, she has taken 3 bottles and they increased the amount by 10 cc's today alone. This little girl wants to go home as badly as we do. She needs to get to 2 - 3 ounces at a feeding and as of right now, she is just over one ounce at a feeding.

They also decreased her oxygen support today and she has maintained all her good levels. The nurses that had her down in the PICU have come up to visit her today. She is known as the little miracle baby around here. Everyone is just amazed at how far she has come in such a short amount of time. Remember, she looked like this just a week ago . . .

This is a picture of Caroline Skyping the boys. How cute is that?!?! They don't care a bit about Jesse or me. They just want to see their sister!

Thank you for your faithfulness in your prayers for our family. They are felt by all of us and it is clear that God is hearing them and answering them! Praise be to God!

"In the tender compassion of our God, the dawn from on high shall break upon us, to shine on those who dwell in darkness and the shadow of death, and to guide our feet into the way of peace." Luke 1:78-79

Slow and steady wins the race?

2010-08-26T19:43:00.001-07:00

We have had a couple fairly quiet days and Caroline is doing really well. She was extubated on Tuesday evening. It happened really fast. The doctor basically came in and said, "Let's try it and see what happens." and she has done very well since. It is so amazing to get to see her whole face and hear her cry. She still doesn't have her full vocal cord power - she is still sore from the respirator so her cry sounds like a little cat cry. She is on the nose cannulas for oxygen but is being weaned off of that. She is currently at 33% oxygen support with a flow rate of 3 liters. Room air is 21% so once she gets to 21%, they will wean the flow rate.

Her feedings are also going well. They are up to giving her 25 cc's of my milk through a feeding tube every 3 hours. I tried breast feeding yesterday and it didn't go very well. She got very upset so it didn't last long. Earlier today, we tried again. She didn't get upset but didn'treally care about it. Then, on a whim, we tried again tonight and she latched on for about 5 minutes. So, we are definitely on the right track.

Last night, we had kind of a scary episode. Well, it was scary for Jesse and me. Apparently, no one else thought it was a big deal including Caroline. She got something called Supraventricular tachycardia. At about 9:45 last night, about 10 minutes after this picture was taken

I was standing next to her bed, stroking her leg and all of the sudden her monitor started beeping. I looked up and it said that her heart was beating 247 times per minute. I of course said, "Well, that's not right!" Unfortunately it was. Within seconds, what seemed like the entire NICU staff was in her room. They kept insisting that it wasn't a huge deal; she could stay like that for several days if not weeks. They tried to get an EKG but they couldn't get the machine to work so to get her out of it, they got two pint sized bags of ice and put them on her face. Almost instantly, her heart rate went back down to normal ranges. The nurse said something like, "Well, she doesn't seem to be bothered by it at all." And she didn't. Basically until the people flooded in and the ice was applied to her face, you wouldn't have known anything was going on. This added tremendously to my concern. What if this happens when we get her home? How will I know if it is going on? I of course asked these questions and apparently, they do eventually show signs like not eating and fever. We were reassured repeatedly that this was not a big deal and it may never happen to her again. We had trouble leaving her last night but were so exhausted we had to leave to get some sleep by around 11:45.

This morning the cardiologist visited and again went through the episode and discussed the implications of the condition. He reiterated that this could have been an isolated incident but they would monitor it closely. He decided to put her on a beta blocker to help with her heart rate. This would be something she would need to be on before her heart surgery as well.

So, today was spent holding her and watching her sweet face! She is such a miracle!

It is so hard to leave her at night. Just like when I was pregnant with her, her most active time is at night. She is so alert and wants to look around and play. So, we have been staying pretty late to get in some extra bonding time. This has caused some pretty tired parents!!!

Please continue to pray for her and our family. We continue to feel like we are in a battle for her. She has come so far in her two weeks of life but she has a long way to go. Please pray for the doctors specifically. Pray that they know the right timing for each step they take with her. Praise God for everything He has done in her life so far and the impact she has already made.

The Chupp Chronicles

#2 and #1

Golden Gators

American Heart Association

Our Christmas vacation

Lost Tooth

Halloween 2011

James -, Caroline - , and Jack-O-lanterns

Firsts

What a difference a year makes!

First day of school

Time to celebrate!

Hand Surgery - *Graphic*

on loan

Grandma and Grandpa Chupp Camp

a year (+) in texts

A family vacay at the river

A little catch-up and some visitors

We've been working on a couple things!

Easter

Five!

I like these pictures!

Happy St. Patrick's Day

Off Oxygen?

One week Post-Op

The Surgery

An army!

Big day tomorrow

First Soccer Game

Soccer

Baby feet

It seems like the plan changes everyday!

It's On

We're Home!

An update

Apparently, she likes to be called "Silly".

Oh, I do have some crazy boys!

A wireless bath

Birthday Party Fun

Our Chirstmas Break

So far . . .

Oh, I do LOVE Christmas!!

Bow head

Halloween 2010

5 Halloweens

Game Day in Aggieland!

Another go at pumpkins

Pumpkins

Update

What a journey!

Some pictures from our two weeks home

I snuck a picture!

Feels like I waited my whole life for this one night!

Back in the Brazos Valley

Our first family picture

Stuff happening these days

A kiddy park roller coaster

Nope, not home!

Going Home . . . Kind of . . . Maybe!

A weekend of visitors

Great Progress!

Slow and steady wins the race?

Hand Surgery - Graphic