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