Wednesday, December 23, 2009

Services for Briana

We will be having services for Briana this Saturday, Dec. 26th. Visitation will be at Heintz Funeral Home in Clinton, from 9 - 10:30 am, followed by a Mass of the Angels at St. Mary's Church, also in Clinton, at 11:00.
The Heintz Funeral Home address is: 10 East Park Row, Clinton, NY 13323.
There is a main village square which the road wraps around, and it is on that road.
We would truly be honored by anyone who would like to attend, but we certainly do not expect anyone to feel obligated. It is the day after Christmas, and the time of year when Mother Nature likes to surprise us. The support from all of you has already been so overwhelming, and we will always remain grateful for it.
Thank you,
Jim and Angela

Tuesday, December 22, 2009

Our dearest Angel Briana,
Our heart, our soul, our blood, our love,
With angels wings, You are with us from above.
Our hearts filled with sorrow,
We cannot have You here,
Still feel You in our arms,
Your presence is so near.
Here, and gone so swiftly,
Your time, far too brief,
Love for You will last,
Far beyond pain and grief.
A Breeze upon our faces,
A Songbird taking flight,
Warm Rain upon our skin,
Which Star are You tonight?
Forever in our hearts,
Your innocence so true,
Our dear sweet Angel,
Briana, we miss You.
Mommy, Daddy, Mackenzie

Parents, love your children,
People, love each other,
Take not one day for granted,
Share peace with one another.

Sunday, December 20, 2009

"Angel" Briana Emily Hayes

There is no easy way to say this, Briana passed away this morning. Thank you all for your prayers and support.
There is not much that we can say now, other than Briana's 18 days with us were very special, and she fought hard from the beginning. Right up until the end, we were with her and we fought along side her as much as we could. We never gave up hope, until she told the doctors and us that she was ready to move on. At that time, they let us hold her and say goodbye to our sweet angel. She felt no pain, and the doctors and nurses acted with the utmost dignity, respect and compassion. We will never be able to thank enough the special people at Crouse, nor all of you for your support through all of this.
I pray that anyone out there who is currently experiencing something like this, or who may ever go through anything like this, please do not ever lose hope and faith. Sometimes things are just meant to be, but please stay strong and hopeful for the loved ones who need it. I truly believe that hope, faith and love can be just as powerful as any medical treatment.
If we may so humbly request one more thing from all of you, it is to please pray for all the families whose babies are still in the Crouse NICU, that they may remain strong and hopeful, and that they can bring their babies home.
We love you so very dearly Briana Emily, and we will do our best to honor your life by supporting other families. We miss you tonight sweet angel.

Saturday, December 19, 2009

Pray for Briana

Briana needs your prayers today. She is very critical at the moment. The doctors are trying everything to help her right now.
I'm sorry I can't say much more.
Please keep your prayers coming.
~Angela

Friday, December 18, 2009

A few steps backward

Briana had a rough night last night. She was having trouble staying oxygenated before we left, and throughout the night, her condition worsened. They had to put her back on the oscillator, and they think she developed an infection based on the blood cultures they analyzed. With all of her IV sites, chest tubes, surgery sites, etc., there are many opportunities for infection. They are giving her antibiotics, and they will reanalyze her blood cultures later today. She is stabilized now, but not feeling well, and very intolerable of any activity.
It is certainly discouraging, but we kept the possibility of setbacks in the backs of our minds, as they are common, and Briana still has a long road ahead. As before, we will try to patiently wait this out while she recovers. The good news is that this time when she recovers, she does not have any surgical procedures ahead of her. It seems that each time she has a surgical procedure, she has a little setback to get through.
Briana is strong though, and we are trying to stay strong with her. Day by day, we will get closer to coming home. We hope and pray for all the other families here as well that their babies will get stronger and be able to go home soon.

Thursday, December 17, 2009

Don't worry, I'll be OK.

video
This video was taken 15 minutes before Briana's surgery. It was very ironic, but she all of a sudden woke up right before. It was the most awake we had ever seen her.

Wednesday, December 16, 2009

Briana's 2 week birthday present

OK. I know it has been a few days since I have posted. I apologize. The past few days have been a little confusing. We were getting information frequently and it was back and forth at times. I tried to write a few times, but the words wouldn't come out.
So anyway, later in the day on Monday, Briana did come off of the oscillator, and was put on a respirator. It took her a while to adjust, she started out with 100% oxygen, but throughout Monday night and Tuesday afternoon, she adjusted and they were able to wean her settings down. She received steroid doses that lowered the inflammation in her lungs and along with Lasix, helped her to excrete some extra fluids.
She was looking good on Tuesday, and they told us that surgery was tentatively planned for Wednesday. Thennnn, after consulting with the cardiologist, they were going to wait for surgery. Her hypertension was still high, and they wanted to do another echocardiogram today, and if that looked good, perhaps surgery would be today, maybe Friday. OK. It was frustrating because we had to lower our excitement again, but if it was a better plan for Briana, so be it. Well, when we came in on Wednesday morning (yesterday), they told us surgery was back on for yesterday afternoon.
"Huh?!"
Apparently, her condition was not going to get any better until she had her surgery, so they decided to go ahead with it. Turn on the nervous switch again. Thankfully, a nurse that we love, Dee, was attending Briana yesterday, and it made everything so much easier to have her there. She made us feel much less anxious through the whole process. She switched out with another nurse before the surgery, so the new nurse could attend Briana during and after surgery, but Dee was still there throughout. We are very thankful to her for making the whole surgery easier to deal with.
We were hoping Dr. Ratner was going to do the surgery, but he was going to be out of town, so another surgeon in his group, Dr. Thayer, performed Briana's corrective surgery. We were able to consult with her before the surgery, and she was very good. We left the room about 3:00, and they told us it would be about 1 1/2 to 2 hours. At 4:45, a nurse came to tell us that everything was going well, but it would be a while longer. Well finally at 6:45, we were able to go see her. She did very well. They moved the abdominal organs successfully, and they used a Gortex patch to repair the diaphragm. She was obviously a little puffy, but she looked good. She has a 2 inch incision below her left armpit, and a chest tube for drainage. Her numbers were good, and she was on the same respirator settings that she was on before the surgery. HUGE...SIGH...OF...RELIEF!
As we learned before, we will celebrate somewhat quietly though, as there is still a long road ahead. We talked with the neonatologist in charge today, and she showed us the x-rays. Because the stomach organs are now removed from the chest cavity, there is an empty space. The body will not allow an empty cavity to exist, so what it does is fill with fluid. They now have to debate on which treatment to use to get rid of this fluid. As the neonatologist put it, it is as much an art as a science to take care of CDH babies. There are many possible bumps in the road ahead, each to be dealt with as they occur, and gradually, Briana will get stronger.
Thank you to everyone for your support.