Update 2018

Now that Brielle's major surgeries are over, it's easy to forget sometimes that she even has a heart condition! We have just been busy living life, and so I haven't really taken the time to update this blog very much. Yes, as with all HLHS kids, the future is unknown. But we are enjoying this time that we have, and are enjoying our beautiful, funny, and sweet daughter. There probably won't be very many updates in the near future. But if something significant happens, of course I will post. We are just thankful to the Lord for all of His blessings. And to all of the medical team who helped make it possible for us to have more time with our daughter. Also, to all of the loved ones and friends who offered their love and prayers. We thank you all!

Update

I realize I haven't updated this blog in over a year! Everything has been going really well with Brielle! The latest news is that she will be going in for her Fontan surgery next month, so please be in prayer for that! I will try to keep everyone updated on her progress! In the meantime, here is a picture from her 3rd birthday party :)

Happy 2nd birthday Brielle :)

Brielle celebrated her 2nd birthday on Friday! The night before, my husband helped me set up the party decorations. The house was quiet, both girls were asleep, and we just sat for a moment in the living room together looking up at the "Happy Birthday" banner. It was such a sweet moment. Two years ago we didn't know if we'd get the chance to celebrate this birthday with her, but now our lives are filled with so much joy and laughter because of her. And we are so thankful!

We just wanted everyone to know that Brielle is doing great! She's a beautiful and spunky little girl who loves life in spite of all the obstacles she's had to overcome. We thank God each day for the answered prayers, the comfort through the storms, and the hope of this little girl's bright future.

In the upcoming months there will be doctor appointments, procedures, etc. But we just take each day at a time and cherish every smile and giggle in between :)

Home!

Brielle is home!

Yay!

Scheduled to go home tomorrow!

Tuesday Night

Oxygen is off and pacing wires are out! Sleeping peacefully :)

Step Down Unit!

Sitting in the step down unit now with my baby girl! Chest tubes and IV are out! I have so much respect for this little one...she has had to endure so much and she still manages to smile :)

Update Monday Morning

Brielle is doing really well. Chest tubes are coming out later this afternoon, and we should be moving to the step down unit later too!

Surgery Update

Brielle is doing really well after her surgery. They'll be weaning everything down over the next couple of days. Thanks be to God :)

Heart Surgery Tomorrow

Well we are all set to go for Brielle's heart surgery tomorrow at 7:30AM! This will be her 3rd heart surgery, and it's an in-between surgery from her Glenn to her Fontan (which she will ultimately have when she is about 3.) I just want to take this opportunity to thank everyone for their outpouring of love and prayers. It really means so much to us!

Update April 5th 2013

I just wanted to give everyone an update on Brielle. I spent all of Wednesday at Children's speaking with the heart surgeon and the neurosurgeon. So far we are still on target for the heart surgery on the 19th. This will remove the shunts that were placed during the last surgery,  and replace them with patches instead. The ultimate goal being to open those areas up for better blood flow, so that her oxygen levels go up to where they need to be. Also, to hopefully resolve the issues she was having with the increasing size of the ventricles in her brain.

Which brings me to my conversation with the neurosurgeon... basically Brielle had a stroke at some point around her first surgery (most likely during one of the two cardiac arrests). The blood left over from that, plus the poor circulation in her heart caused the fluid in the spaces of her brain to increase. The good news is, that improved some during the last little procedure they did with the cardiac cath. However, if she still has problems after this next surgery, they will probably have to go in and place a shunt (in her brain) to help drain the fluid better.

So we just really need this next surgery to go well and do what it's supposed to do. All this, while hoping that no complications happen from the surgery itself (and believe me there was quite an extensive list of possible complications.) But I know I serve an awesome God, and I really am thankful for all that He has already done for my sweet little girl. And I'm just going to have faith that He knows what He's doing. Thank you all again for all of the prayers.

Next Surgery

Brielle's next surgery has been scheduled for April 19th.

Surgery Update

This is just to update everyone that Brielle will be having another heart surgery sometime within the next month. I'll provide more details once I have them.

Home!

Brielle is finally home and seems so happy! It turns out the shunts from her 2nd surgery were severely narrowed, causing her oxygen levels to drop and the fluid in the ventricles of her brain to increase. So they did a cardiac cath procedure where they were able to balloon one shunt and implant a stent in the other. Everything was successful and she is doing so much better now! We're still going to be keeping an eye on her head circumference to make sure that there are no more problems with that. But so far so good! So glad to be home again!

Update Wednesday Afternoon

Just talked to the cardiologist and it turns out Brielle has some narrowing in one of her shunts. This is most likely the cause of her oxygen problems. The plan is still to do the cardiac cath tomorrow and take it from there.

MRI Update

Well we went in for Brielle's MRI yesterday. Unfortunately, after she came out of sedation, her oxygen levels remained low, so we stayed at the hospital over night. The plan is to do a cardiac cath and an echo tomorrow to try to figure out what's causing this, but in the meantime Brielle seems like her happy little self. We did get the results of the MRI back, and the next step is to talk to a neurologist. I'll give an update then, because as of right now I'm not really sure what the results mean, other than there are a few things we need to keep an eye on. So right now we are home to gather a few things and we'll be heading back down there later. I'll try to give updates as I get them!

MRI

Took Brielle to a routine doctor appointment today and discovered that her head circumference has increased quite a bit since she was last measured. Back in December they were concerned about this and sent her for a head ultrasound. The head ultrasound showed that she did have increased fluid on her brain. Well the doctor had just been keeping an eye on things, hoping that the fluid would not increase further. But after today the concern is back again, and Brielle will be getting an MRI sometime this week. If the fluid is in fact increasing, Brielle will probably need to have a shunt put in place to basically help drain the fluid from her brain. So needless to say we would appreciate your prayers during this time.

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!