December 27th (Reflecting on this year)

Today our sweet little Brielle turns one! What an amazing year it has been. In some ways it feels like only yesterday we were driving to the hospital for the c-section, and yet when I think about all of the the events of this past year it feels like a lifetime ago. There were times I'll admit I was afraid, and times where there were no words to describe my feelings, only tears. But getting to know this precious little girl has been one of the greatest blessings of my life. And while she is not afraid to let you know when she's upset, she has such a gentle spirit. Her smile just lights up the room, and to look at her, you would not know all that she has been through. I thank God for every day I get to spend with her, and I'm thankful that He has heard all of the prayers that have been lifted up on her behalf. I know I've said it before and I'll probably say it a million times more...thank you to everyone who has prayed for her! Words can not express the joy I felt watching her enjoy her first bithday cake. So here's to many more! Happy 1st birthday Brielle!

Love,
Mommy :)

Happy 1st Birthday Brielle!

Brielle received an excellent report from her cardiologist and celebrated her 1st birthday this week! Congrats baby girl :)

Crawling!

Brielle started crawling for the first time today! This is such a huge deal for her, because she has been working so hard in therapy lately. So happy to see the progress she's making! Oh and these are her 10 month pictures!

Pictures (8 months)

Can't believe how the time has flown!

Update for September

Thought it was about time for an update! Brielle has been doing great! She has been eating everything by mouth, including baby food! No more NG tube! We are still thickening her formula to prevent aspiration, but she has been doing so well with her feeds! She has also been weaned off of a few of her meds, which is a huge relief! The biggest thing we're working on now is her development. Spending so much time in bed, and being in and out of surgery, has caused her a few setbacks. Though she is one determined little cookie! She rolls over on her belly, and you can tell that she wants to crawl so bad! Her muscles just aren't able to do it quite yet, and you can see the frustration in her eyes. But she will get there! We're working with therapy on ways to help her get stronger. But all in all she is doing awesome, and she is such a joy to our lives! It's so sweet to see the relationship between her and her sister. It's going to be so much fun to watch them grow up together! Thanks again to everyone who has been praying for her! We know this progress would not be possible without the Lord!

Pictures (taken by mommy while NG tube was out)

Home at last!

We're still working on feeds, but we're so glad that she can be home with us again :)

Not Out Of The Woods Yet...

Brielle has been having trouble tolerating her feeds, and the doctors may have to place a G-tube if things don't get any better. Please pray that they won't have to resort to this. Other than that, she is recovering as she should!

Update 5/16/2012

Brielle is doing great! They're talking about taking her down to the step down unit either today or tomorrow! She has also been eating really well. This is the best I've ever seen her eat! So happy for her!

Update 5/11/2012

Still amazed by how much things can improve overnight! Brielle has her breathing tube, chest tube, and some of her cardiac lines out now! She looks so much better and was even peacefully awake for a little while. They are thinking of taking her off TPN tomorrow and starting her regular feeds back up!

Recovery Update

Brielle is doing well since her surgery. The next step is to wean down her meds and take out her breathing tube.

Surgery Update

Well after 14 and a half hours of intense surgery...Brielle is finally in recovery! Pray that she heals quickly!

Update About Surgery

So Brielle stayed in the hospital after her cardiac cath because she was having some issues. They have decided to do her surgery on Tuesday as long as everything goes according to plan. This will be the 2nd surgery of 3. Please pray that this surgery goes successfully and that she has a speedy recovery!

Cath Update

Well there were a few hiccups along the way, but Brielle is now done with her cardiac cath procedure. She should be coming home tomorrow afternoon. Then we will start discussing her next surgery.

Cardiac Cath

Brielle goes for her pre-surgery cardiac cath tomorrow. She will be spending tomorrow night at Children's. Pray that everything goes well with her procedure!

Pictures

Brielle decided to take her feeding tube out this morning....so I took the opportunity to take some good pictures (with the help of my mother in law) before I put a new one back in.

Home!

:)

Brielle is home again!

In Time For Easter/Mommy's Birthday!

Supposed to pick up Brielle tomorrow! We're headed back home! Can't think of a better birthday present!

Still Working On Feeds

They're still working on getting Brielle to eat more. Other than that, she is doing well and will come home as soon is she is ready!

3 months

Update 3/26/2012

Brielle is doing much better. Should be coming home at the end of this week or the beginning of next!

Back to intensive care

Everyone please pray for Brielle. She had to go back to intensive care last night. They think she might have NEC again. She'll have to stay in the hospital for antibiotics and TPN nutrition for awhile.

We're Home!!!

Brielle came home last Friday and it has been busy ever since! Things have been going pretty good. We had to re-insert an NG tube for awhile because Brielle gets too exhausted trying to take a whole feed by herself. Hopefully she'll build up her endurance and the tube can come back out soon. So happy she's home though!
Here's a picture of her car ride home :)

Update 2/29/2012 #2

Brielle's MRI procedure went well this morning. Discussing results tonight. Mommy is spending all night, and all day Thursday and Sunday to get ready for her to come home! It's going to be a long weekend...but so worth it!

Update 2/29/12

Brielle is having an MRI done this morning...praying that everything goes OK with that. If all goes well, she may be able to come home Monday!

Homeward Bound :)

We got the news today that we may be going home as early as next week! Yay Brielle!

8 weeks

Step Down Unit!

Brielle is officially in the step down unit! Yay!!!

Update 2/19/2012

Brielle is doing great. They want to move her to the step down unit within the next few days! Yay!

Update 2/16/2012

Brielle did well today...they're going to try to start her feeds again tomorrow

Procedure Update

Brielle's procedure went well and they didn't find anything wrong! Thanks for the prayers!

Baby Milestones

Brielle is gaining more head/neck control. She can lift her head while she's on her belly and look around. It's nice to celebrate her just being a baby.

7 weeks

Update 2/15/2012

Brielle is getting another cardiac catheterization today. The doctors still have some concerns about the function of her heart. Please pray that she does well during this procedure.

6 week picture

Update 2/09/2012

Brielle is doing fine. Just giving her some time to recover from her NEC episode. It will probably be a little while longer before they try to give her milk again. Other than that she's a happy, peaceful baby right now.

What is NEC?
Necrotising Enterocolitis (NEC) is an inflammation of the bowel (intestines) that may damage the bowel to a variable extent. It usually causes a temporary intolerance of milk feeds. NEC may affect just a small part of the bowel or, on occasions, the whole bowel may be affected.

Update 2/06/2012

Brielle had a little setback with her feeds so they're going to hold off on feeding her milk for a week. Other than that she is doing really well.

Update 2/3/2012

Brielle has been doing well lately. Just working on taking more and more during feedings.

5 weeks old

More Progress Made Today

Today they removed Brielle's nasal cannula as well as one of her PICC lines. They also started feeding her with a bottle for every other feeding. Hopefully she'll get her NG tube out soon!

Yay :)

All of Brielle's chest tubes have been removed successfully!

One Down One To Go

The first chest tube was removed successfully. One more to go...they should be able to take it out tomorrow.

1/26/2012

Brielle was really alert and even spent some time out of her bed today! She's getting just milk now... no more TPN! This is the best she's looked since her surgery. She's scheduled to get her first chest tube out tomorrow. Pray that all goes well...we really don't want to see her go backwards again.

1/25/2012

Brielle had a pretty good day today. The goal is to take her chest tubes out this weekend.

4 weeks old

Cheers!

The doctors cheered for Brielle tonight...her breathing tube is back out!

1/23/2012 Update

Brielle has been doing well these past few days. The goal is to take her breathing tube out tomorrow.

1/20/2012

Brielle has been much more alert today, and has actually been moving the arm that they have been concerned about. They also started her feeds again. So better news today than the past few days have been.

They've started her on some antibiotics for a possible infection...so pray that clears up. But other than that, this has been a pretty good day for our little Brielle.

Stroke

They discovered through a scan of her brain today that Brielle had a stroke at some point. We won't know the extent of the damage until later on, but it appears that the movement in her right arm is less than it should be. They are also concerned about another clot, but they won't know for sure until they do an MRI (probably next week.)

Her chest tubes are working as of now, hopefully they will be able to remove them safely later on. Other than that she's been stable. Just taking life a day at a time.

The Roller Coaster of "Wait and See"

They inserted the new tube which is working so far. Unfortunately, Brielle is back on the breathing tube because of her difficulty breathing. So the cycle starts over. We wait and see if the interventions help...then if they do we try to wean everything off and hope for the best.

Update

The surgeon wasn't able to get the tube to go as far in as he wanted, so he's going to insert yet another (smaller) chest tube. Our daughter's poor chest looks like a pin cushion. Brielle is stable, yet she's still having trouble while breathing and her heart rate has increased. Still praying that they are able to get all of this under control.

A Bigger Chest Tube

So the new chest tube is no longer working like they would have liked. Now the surgeon is going to go in and place an even bigger chest tube. Pray this one works.

Chest Tube #2 as of Tuesday Night

The second chest tube has been successful so far and Brielle's lung is almost fully inflated again. Now the plan is to just give her some time to heal, and then try to remove them later on.

3 Weeks Old

In Need Of Prayer

They tried to remove Brielle's chest tube today, but she developed the same problem that she had before. The good news is that this time they were prepared. They inserted another chest tube, but unfortunately that chest tube has not been working. So they are going in now to insert yet another chest tube. Please pray that this one works, and that eventually they are able to remove all of her chest tubes without a problem.

Also, she has been having trouble with pain. They had to increase her medication today to keep her comfortable.

The good news is that she has been making progress with her other goals. Pray that she continues.

Baby Steps Forward

Brielle got her breathing tube out today and they started her feeds again. Baby steps in the right direction :)

Better Day Today

Brielle had a much better day today. Hopefully she'll be able to get her breathing tube out tomorrow.

A Tense Night

The doctors thought that Brielle had a clot in her new shunt. Thankfully, after performing a cardiac catheterization tonight, they were able to rule that out. They will have to keep an eye on a few things until her next surgery, but for now everything is doing ok. It was a tense 6 hours though, to say the least. Hopefully tomorrow will go better for her.

Two Steps Forward and One Step Back

Received a phone call from Children's around noon. Brielle developed a pneumothorax after they tried to remove her chest tubes.  A pneumothorax is the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally does. This put a lot of stress on her body, which already has to work hard to compensate for her hypoplastic left heart. 

They were able to get her stable again, but they had to re-insert her breathing tube, insert a new but smaller chest tube, and stop her feeds (she's getting nutrition through her PICC line again). It will take a few days for her to recover to where she was before. So it's two steps forward and one step back, but at least she came through. 

The hardest part in all of this is to see her when she's uncomfortable. But they gave her a little more pain medication before we left tonight, and she started to look more at peace. She is a little fighter and one tough little baby. We thank God for keeping His hand on her. 

1/11/12

They started to try to feed Brielle today (through NG tube). Hopefully she'll be able to tolerate more and more as time goes on.

1/10/12

Brielle is two weeks old today and breathing tube is out!

1/9/2012

Brielle's procedure went well this morning. The next phase is to wean her off of her breathing tube and to remove her chest tubes. She is such a tough little girl and we're so happy that she has gotten through so much already.

1/8/2012

Brielle is scheduled to have her chest closed first thing in the morning. Hope all goes well.

Recovery Update For Saturday

Brielle looked so good tonight. The swelling in her face is so much better, and she actually tried to peek at us a couple of times. If all continues to go well, they will try to close her chest within the next couple of days.

1st Surgery Finished

Well there were a few challenges along the way, but Brielle's surgery is now finished and she is in stable condition. So thankful :)

Surgery Update

So it's been a long morning, but here goes...

They were preparing Brielle for her surgery when her heart went into an irregular rhythm. They performed CPR and were able to get her stable again within a few minutes. They don't foresee any long term damage, and were glad that she recovered as well as she did. However, the doctors have decided to postpone her surgery, as they didn't wan't to risk major surgery after such an event.

Right now they have her on a ventilator and are keeping a close watch on her. As long as her condition is stable, they will attempt surgery again within the next 24-48 hours.

Hopefully, the next surgery attempt will go better so that she can move on to the next phase of her recovery. We appreciate all of the support and want to thank everyone for their prayers.

Monday Night Update

Brielle's 1st surgery is scheduled first thing in the morning...headed down that way now