Friday, August 31, 2007

What a Roller Coaster Ride

FRIDAY, AUGUST 31, 2007 11:44 AM, CDT
What a roller coaster ride this is. Brianna had a great night. In order to remove the breathing tube they had to stop the sedatives which they did first thing this morning. Yesterday without sedatives she was a wild woman, trying to get the tube out of her mouth. Today, without the sedatives, she is relaxed as can be which, for tube removal is not good. She needs to be fully awake in order for the tube to be removed. is a waiting game. The best thing for Brianna is, of course, to do things as she dictates them.
We just love this baby girl so much and want her to get better so we can take her home.

Thursday, August 30, 2007

Doing Better

THURSDAY, AUGUST 30, 2007 02:43 PM, EDT
Brianna is doing well today. She has been lightly sedated most of the day so her little body can recover. Although she is not "awake", we know that she knows we are here because when we whisper in her ear, she moves her head as if to acknowlege us. The plan is to remove the breathing machine in the morning. You might be wondering about her incision. No, it's not very attractive but yet it is not what I thought it would be. The stitches are inside with "glue" on the outside. The scar shouldn't be too noticeable.

Frightening Times

THURSDAY, AUGUST 30, 2007 02:43 PM, EDT
Brianna is doing well today. She has been lightly sedated most of the day so her little body can recover. Although she is not "awake", we know that she knows we are here because when we whisper in her ear, she moves her head as if to acknowlege us. The plan is to remove the breathing machine in the morning. You might be wondering about her incision. No, it's not very attractive but yet it is not what I thought it would be. The stitches are inside with "glue" on the outside. The scar shouldn't be too noticeable.

Wednesday, August 29, 2007

Breathing on her Own

WEDNESDAY, AUGUST 29, 2007 02:49 PM, EDT
The breathing tube was removed at 2:30 p.m. Brianna is now breathing on her own!!! Great news! We are so proud of our little peanut. We get to hold her in about 30 minutes.

Seeing Bri after Surgery

WEDNESDAY, AUGUST 29, 2007 11:51 AM, EDT
We finally got to see her last night in the PCICU unit after about a two hour wait. She had some complications when they moved her but now she is doing remarkably well.
This morning when we walked into her room and started talking to her she opened her eyes and was looking at us. The nurse had to bundle the blanket over her arms because although she is sedated, she is trying like the dickens to pull the ventilator tube out of her mouth. If everything continues they will be removing the ventilator either late this afternoon or first thing in the morning. She is also wiggling all around. We are thrilled with her progress.
Once again, thank you everyone for your thoughts and prayers.

Heartbreaking, Absolutely Heartbreaking

WEDNESDAY, AUGUST 29, 2007 11:20 PM, EDT
Well, the holding of Brianna didn't go so well. The nurse had such good intentions, we got the tubes all organized, rocking chair over by the crib, but when we lifted Brianna up in the blanket, it was obvious that it was uncomfortable to her so we immediately put her back in the crib. As much as we want to hold our little peanut, her comfort is far more important.
The first nurse Brianna had in the PCICU was Kay. Kay was a wonderful and compassionate nurse. She told us that for every step forward, there would be two steps back. We experienced that tonight. We were so pleased that the breathing tube had been removed earlier today (2:30 p.m,) but when we went back early evening to be with Brianna, Jerry and I were both taken back. At that time the only way to describe her breathing sound was as if she was breathing through a sea of liquid. (Jerry said that description was too much....said I've been reading too many novels!!! At least we still have some sense of humor at this very challenging time.) It was very distressing to us. The nurse told us it was "normal" due to swelling of the throat after removal of the breathing tube, but it just didn't sound good to us. The doctor was called and the bottom line is that her carbon dioxide level was too high (she was having a hard time breathing through that liquid) so they intubated (put her back on the breathing machine) again. They told us it was not unusual for this to happen but still, we just want to move forward and take our baby girl home. I think I speak for both Jerry and I when I say that we feel better that they put her back on the breathing machine. If they had not done that, I don't think we would have left the hospital tonight. Her breathing sounded that scary. But with her on the breathing machine, we too can breathe easier. We will give you an update in the morning.

Tuesday, August 28, 2007

She's Out of Surgery!!

TUESDAY, AUGUST 28, 2007 06:14 PM, EDT
She's out of surgery! The doctor came out to see us about 15 minutes ago. His first comment was "she is fine and she responded to the surgery like a normal baby". So we are hoping she will continue her path just like a "normal baby". We haven't seen her yet because they have to move her from the surgery unit to the Pediatric Intensive Care Unit which will take about an hour. We will post more later this evening. Thank you for all the prayers....God IS listening.

Surgery Day

UESDAY, AUGUST 28, 2007 03:17 PM, EDT
As you can imagine it has been a very stressful day. Brianna was scheduled for surgery at 12:30 p.m. but she didn't actually go in until 1:30. The first hour consists of preparing her for the actual surgery. Attaching the necessary IVs, another echocardiogram, etc. They updated us at 2:50 p.m. that she is now in surgery. Say another prayer, please.

Monday, August 27, 2007

Heart Surgery is Scheduled

MONDAY, AUGUST 27, 2007 08:43 PM, EDT
FYI - Brianna's surgery is scheduled for Tuesday, August 28th at 12:30 p.m. We have been told that it could last from 3 to 5 hours. Count on 5. We will update as soon as possible. Thank you everyone for your continued prayers.
Brenda and Jerry

Friday, August 24, 2007

Getting Stronger Every Day

FRIDAY, AUGUST 24, 2007 09:07 AM, CDT
Getting Stronger Every Day
I know I have said this before but Brianna has amazed just about everyone. The doctors cannot believe her spirit. She has continued to gain weight and inches. Although she is tiny for her age and I get so tired of people asking me when I am out and about "how old is she, she's so tiny" and when I tell them, they get a big question mark look on their face. To which I feel no obligation whatsoever to answer. Sometimes I just say "oh, she has a heart condition, that's why she is tiny" other times I just say "she's just a petite baby girl."

Living a "Normal" Life

FRIDAY, AUGUST 24, 2007 08:59 AM, EDT
Living a "Normal" Life.
We attempted to continue our life as normal. But anymore, what is normal? We are now waiting for Brianna to either reach four months of age or weigh 10 lbs. in order to have open-heart surgery to close those two holes in her heart. Going to any of Brianna's doctors can be so depressing. They keep reminding us (gently) about her condition. That it is not compatible with life. We are fully aware that having the heart surgery will not SAVE her life, it will only keep her here a little longer with us. Babies with this condition, if they live to be one year old, are considered long-term survivors. Try living with that on your mind just about every minute of every day. But we know our baby girl is one heck of a fighter. And we just get through every day by loving her.

Tuesday, August 21, 2007

Moving Forward, First Set of Shots

TUESDAY, AUGUST 21, 2007 05:56 PM, EDT
Moving Forward.
The doctors had told us to treat Brianna as if she were a "normal" baby. Easier said than done, especially when you think every minute is going to be the last. I, personally was on a campaign not to let Brianna cry, not even whimper. I wanted her to be happy every moment she was with us. But also, crying meant burning calories and that was something she couldn't afford to do. Bless her heart, every waking moment, there I was, poking a bottle into that baby girl's mouth. And it worked. She was gaining weight, not much, but something, at the tune of approximately 4 oz a week.
Once we brought her home I became obsessed with something else. I had to find a photographer to come and take some family photos. There's no doubt that God pointed me in the right direction. I pulled open the phone book and just started calling photographers and one of them was aware of an organization called Now I Lay Me Down to Sleep. It is a worldwide organization that photographers can belong to (volunteer) and they will go to the hospital, your house, whereever they need to, and take photos of you and your baby. They only do this for families whose babies are not expected to live. Talk about compassion. These people have a heart of gold. Well, our photographer was a woman by the name of Martha Bravo. She was incredibly. She came to our house when Brianna was ten days old and took photos that we will cherish the rest of our life. To see them, go to the links at the top of the page and click on the photodex link.
That done, we settled into doing whatever we had to do in order to keep our baby girl happy and alive. Everything seemed to be moving right along until Brianna turned one month. Then we had our first scare.
First Set of Shots.
Brianna went to the pediatrician for her one month check up and it was at that time she was due for her first set of shots. I was torn, do we have them administer her shots or not? Well, we decided yes. So, she had her hepatitis shot and they also started her on medication for her heart. What I didn't tell you yet, is that we found out after she was discharged from the hospital that she had two holes in her heart (normally found in patients with Trisomy 18). So here we have a hepatitis shot and heart meds and our little baby girl fell asleep and I couldn't wake her for nothing. I panicked. Off we went to the hospital for help. She stayed overnight but apparently it was the combination of the shot and the heart meds that made her fall asleep. She really was okay. I was the one who was NOT okay! 24 hours later she was her normal self (and I was too, sorta).

Monday, August 20, 2007

A New Life, Prayers, Prayers and More Prayers

MONDAY, AUGUST 20, 2007 05:22 PM, EDT
A New Life
Brianna was born on Thursday, April 12, 2007 at 9:45 pm. She was a beautiful yet petite baby girl. Weighing in at only 5 lbs. 8 oz and 18" long. After a beautiful pregnancy and relatively easy delivery, we had our baby angel in our arms, literally. At delivery my husband and 15 year old daughter noticed that Brianna was petite with cute little "elf" ears and a tiny little nose. Nothing else seemed different about her at all. So we took in the wonder of our little baby girl and it was love at first sight.
The Beginning of a Very Frightening Journey.
The bunny picture was taken the next morning and it continues to be one of our favorites. Family and friends were making their visits when to our total surprise, we were visited by three doctors from the hospital. One of them being a geneticist from Winnie Palmer Hospital. They said they had something to discuss with us. It was at that time they told us that our beautiful, normal-looking baby girl, would probably die within the next 24 hours.
I don't think you can imagine the shock and absolute horror of hearing something like that. One minute you are in heaven and the next, hell. They told us that she had the characteristics of a condition called Trisomy 18. And believe me, when you hear the words "Trisomy 18" for the first time, you say WHAT? mostly because it was something that we had never heard of before. Of course there was denial, on no, you're wrong we told them. Look at her, she's beautiful. But once they started describing the characteristics, and as much as we didn't want to believe them, the indications were there. So, they told us to prepare. Prepare for losing her within the next 24 hours.
Prayers, Prayers and More Prayers.
At this point, Jerry's parents, Doug and Helen, started a "Celebration of Life" that was held every afternoon for Brianna. We were so thankful to have her with us and we wanted to make sure that God knew we were thankful. Many of our friends were angry with God for this happening to us, but somehow, I wasn't angry with him. I was just thankful for every minute.
Brianna fights back.
What they didn't know is that Brianna is a fighter and I mean BIG TIME fighter. Right away, it was difficult for Brianna to drink. As much as I would try to nurse her, she just wouldn't cooperate. We were constantly trying to get her to take to the bottle, but hour by hour she was losing weight. By Saturday, they had to put a tube in her nose going to her stomach in order to feed her. When the nurse gave her the food, her daddy put a pacifier in her mouth, encouraging her to learn how to drink from a bottle. By Sunday afternoon, it WORKED!!!! The tube was removed and she was drinking from a bottle. Slowly but surely, she was thriving. All we wanted to do was take our little princess home but the doctors wouldn't let us. They wanted to run tests, tests and more tests.
By Tuesday, we were at our wit's end. We wanted to go home. Brianna barely weighed enough to fit into her car seat, 5 lbs. 1 oz. but home we went.