The Chupp Chronicles: July 2011

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!!