Thursday, December 20, 2007

Halloween and Packing on the Pounds

I've added some new pictures on the photo page. There's one of our entire family and one of Bri at Halloween. Our photographer, Martha Bravo, sure does one fantastic job, yes?

Tuesday, December 11, 2007

Packing on the Pounds

TUESDAY, DECEMBER 11, 2007 05:15 PM, CST
I know, shame on me for taking so long to write. It's been pretty busy around here. At my last posting, Brianna weighed 11 lbs. Well, here it is two months later and she now weighs (drumroll, please) 14 lbs. 12 oz!!! Our baby girl is packing on the pounds!!!
Let's see, in the last two months she has continued to eat solid foods by mouth, attempt the bottle but still not enough. She has used the sippy cup and her occupational therapist says it's possible she will just forego the bottle and do the cup thing. Fine with us! This morning at therapy, we actually strapped her into a highchair (pillows on both sides because she still hasn't mastered sitting up) and she ate her food there. She was able to sit upright for about 15 minutes before doing the leaning over thing.
Last week we took her for an assessment which the geneticist attended and we have to tell you, she was AMAZED!!! Said if she saw Brianna out and didn't know she was diagnosed with T-18, she would never guess it. She only actually believes it because she is the one who ordered and read the results from the testing. Told us that Brianna truly is an amazing baby, considering her diagnosis.
Brianna is opening her hands and holding onto toys, smiles like crazy when we amuse her. LOVES her bathtime and splashes like a seal. Kicks her feet to knock the toys overhead on her activity mat. And she babbles... says "Hi!" absolutely unintentionally, but you would swear she meant it. It is the sweetest thing. I tell you, she is truly a miracle. An absolute joy.
With that, I'll end for now. Happy Holidays to all.

Saturday, October 27, 2007

Tiny Little Glasses....Oh So Cute

SATURDAY, OCTOBER 27, 2007 12:20 AM, CDT
There she is in all of her glory....tiny glasses and all and isn't she the cutest thing you have ever seen?!!!! When we put her glasses on her, she gets the biggest smile on her face. It's like wow....I can see!!! We discovered at her eye appt. that she is far-sighted. That explains why alot of times her eyes will cross because as she tries to focus on something that is close to her, she just couldn't do it. She doesn't seem to mind the glasses most of the time. Other times she will try (and succeed) to brush them off of her face.
More pictures on her photo page as well. One from her six month birthday party and one from her first day of trying solid foods...she liked them!!! Carrots. Now we are onto yellow squash and she likes that too. Just smiles so big when she eats. It only you could see, her smile would melt your heart. She is such a delightful baby girl.
At this point in time, everything is good with her. She had five (yes FIVE) shots last monday. Four were the six month immunization shots and the fifth was a special shot to help prevent her from getting a virus called RSV that could be fatal to her. She was such a trooper. Didn't feel well Monday night but Tuesday, it was back to business as usual. She now weighs 11 lbs, 14 oz. Finally out-growing all of those clothes we received at the baby shower. Just in time for Fall....
Oh, we had new photos taken. Check out our wonderful photographer, Martha Bravo, to see a sneak MUST see the pumpkin photo. It's adorable!!!! Click on the link below or copy and paste the following. Would love for you to leave comments on her blogspot. Martha would love them.....
P.S. The mask is part of her halloween costume, we got it from Build a Bear!!! More to come....
By for now.

Sunday, October 14, 2007

Happy 6 Month Birthday Angel Baby

SUNDAY, OCTOBER 14, 2007 10:37 PM, CDT
Happy Six Month Birthday Beautiful Girl
Last Friday was Brianna's six month birthday and we had a little get together with friends to celebrate. Brianna knew the party was for her because she participated happily, only taking a mini catnap during the course of the evening. Of course we took photos and will post some in a few days. She is getting so plump now and so fast that if I don't dress her in some of the clothes she couldn't wear a couple of weeks ago, then she won't get the chance to wear them before she outgrows them. Darn....that means we will have to go shopping!!! Uh oh, gotta go, I hear the little peanut fussing in the other room. Will keep you posted later on her various check ups later this week. Good night.

Tuesday, October 9, 2007

Good News and Celebrating 6 months of Life

TUESDAY, OCTOBER 09, 2007 04:45 PM, CDT
I know, shame on me....I have been away for way too long. But, remember, no news is good news. Let me make the last three weeks short and sweet. We have been to the cardiologist two times and Brianna is now totally off of her heart meds. Today we were at the speech therapist for the first time (to work on bottle feeding) and Brianna drank 20 mls. It was fantastic. The therapist expected maybe 2 mls, not 20. She believes it won't be too long before she is totally drinking by mouth. She goes to see an opthamologist next week (wouldn't she be just adorable with itty bitty glasses?!!) to help correct her lazy eye.
Brianna is growing like a weed. She now weighs 11 lbs and is able to wear some of those adorable outfits she has in her closet.
Last night me, Ashley and Bri were at the mall so we went into Build a Bear. It's been a long time since Ash and I laughed as hard as we did while dressing Bri up as a disco dancer, pirate, kitty cat, football player. Yes, she is still tiny enough to wear stuffed animal clothing!!! It was a good time.
This coming Friday will be Bri's six month birthday. To say the least, we are estatic. Who would have thought that we would reach this milestone. She has been doing so well since the surgery. Happy with big smiles (almost) all of the time. It sure makes Jerry and I feel good to know we did the right thing for her. She is our little angel.

Wednesday, September 19, 2007

Incision-looking time, lost my marbles and a little Peanut

Okay, there you have it. Incision that you can't see unless you zoom in and also a good look at Brianna's G-tube. I know we have been known to call it a "feeding" tube but to me that just doesn't sound good. G-tube sounds so much better. Doesn't she look just wonderful? and it's only been three weeks.
I have to tell you when Jerry read one of my last updates about things being so good, he asked me if I had lost my marbles. Things are good but we are incredibly tired. Brianna is eating every three hours(around the clock), it takes times to get the feeding pump ready, hook her up, set the timer to go off in one hour, get back up, empty, rinse out the pump and hope to goodness she doesn't get gas, or a tummy ache. Speaking about gas, it's rather interesting, all we do is uncork the end of the G-tube and it will "burp" out.
So, at night we only get two hours of sleep at a time. We try to take turns but sometimes you can't help but wake up and hear what's going on.
I told Jerry that I didn't think people wanted to hear us whine but the truth is, it seems like everyone really wants to know what is going on so, there you have it. I hope it doesn't sound like we're whining because really we're not. We are very happy to have our little peanut here with us.

Monday, September 17, 2007


MONDAY, SEPTEMBER 17, 2007 01:53 PM, EDT
Well, we have been back now for a couple of days and are working on getting back into the groove of things. Brianna is doing remarkably well. She is so happy most of the time. Smiling, smiling and smiling. She is so content just to hang out. She has also been sleeping most of the night. It's like when it's time to go to sleep there's no fussing, we can put her in her crib and she will lay there a bit looking around (smiling of course) and then go off to dreamland. She still won't take the bottle completely. If you drip the formula into her mouth she will gladly drink it but she still doesn't know exactly what to do with the bottle nipple. We will be working with a speech therapist in the near future and feel hopeful about it. Later today or tomorrow I'm going to post some pics of her tiny little scar. I have to say that you will probably be amazed at how good it looks.

Saturday, September 15, 2007

We Are Finally Home

Yes, yes, yes....we are home!!! Yay! Arrived last night. After 19 days away, we are so glad to be home. We have some things to get used to though. It's like having a newborn again because Brianna eats every three hours, it takes an hour to eat and it's only two hours before we do it again. That's okay. We're not complaining because WE'RE HOME! Thank you to everyone for your many thoughts and prayers. Also, a big thank you to the Ronald McDonald House in Tampa. For those who are looking for a place to volunteer, please check them out (there are two in Orlando). It can be as simple as preparing a casserole and dropping it off or picking up a few extra items at the grocery store and taking them over.
Signing out for now but we will continue to keep everyone posted on Brianna's progress. Thank you again.

Friday, September 14, 2007

What a Happy Little Girl

FRIDAY, SEPTEMBER 14, 2007 11:16 AM, EDT
What a surprise this morning. We came in and pulled back the blanket and her iv lines are gone. Brianna is so happy (not to mention how happy we are). She has been smiling all morning long. We took a call from the pump company and the pump is scheduled to be delivered between 4 and 5 this afternoon. The lady who is in charge of discharging patients has been in to see us so the ball has started rolling. Will keep you posted.

Thursday, September 13, 2007

Home Soon

I am sitting here watching one very content little baby girl. Her tummy is full and she is swinging in the swing. Good news, bad news, sorta. Doctors came in this morning and said we can go home after we get the pump for home feeding. Bad news is that they were going to order it today and we may or may not get it tomorrow. If not tomorrow, they don't work over the weekend and it will be Monday. Yeah, our thoughts exactly.....

Wednesday, September 12, 2007


Brianna has surprised both Jerry and I today with her sweet disposition. In spite of no food since 10:00 p.m. last night and someone poking a hole through her tummy, she has been all smiles and happy go lucky. I think she knows we're getting closer to going home! She has also been removed off of isolation. The final negative came back for the is a Happy Day indeed. I mean a Happy 5 Month Birthday indeed!!

Happy 5 Month Birthday Baby Girl

Yes, Happy 5 month Birthday to our little peanut. Brianna also had her g-tube put in this morning and it went very well. No complications, no problems. She hasn't had any formula since midnight last night so we thought when we came in this morning she would be one cranky baby girl but not Brianna. Smiling and happy as can be.

Monday, September 10, 2007

Waiting for a G-Tube

Brianna is looking better and better each day. Turning into a little butterball! Heck, by the time we go home the incision on her chest will probably be healed The earliest the g-tube can be inserted is Wednesday morning. The procedure can be done in the unit she is in (PICU) now. The gastrointestinal doctor and his staff bring their equipment with and perform the procedure in her room. The doctor told us this morning that if everything goes as planned, we should get home during the weekend....glad they told me that now, I've been hoping to go home on Friday. Oh well, what's a couple more days now that we have been here 2 1/2 weeks.
This morning the third negative came back regarding the infection. Good news. Although I don't mind that she has been on isolation, to me that means no extra germs have been coming in either.

Wanting to Go Home

MONDAY, SEPTEMBER 10, 2007 03:41 PM, EDT
As of today, we have been here two weeks now and we are more than ready to go home. Looks like Brianna will be getting a G-tube since she is not consuming enough calories by mouth. Something we are working on daily. We are waiting for the doctors to get back with us with a scheduled date for insertion of the G-tube. We are hoping for as early as Tuesday morning. Once that is done, we will have to wait another 24 hours until they will utilize the G-tube. If everything goes well, we hope to be home by the end of the week. The insertion of the G-tube shouldn't be a complicated procedure but, with Brianna's trisomy condition, anything could happen.

Sunday, September 9, 2007

Sleeping Blissfully

SUNDAY, SEPTEMBER 09, 2007 10:44 AM, EDT
The picture above is what we found when we arrived at the hospital this morning. Brianna was so blissfully asleep. Our little peanut is getting bigger. Two weeks ago when we checked in, she weighed 9 lb 4 oz. Today she weighs 10 lbs. She has been awake all morning, smiling and talking up a storm. I think she's trying to tell us to get her out of this place, that she misses her sister, Ashley and those two crazy dogs that we have. Soon, we tell her. We just have to be patient.

Saturday, September 8, 2007


I know, I'm late in updating the page. Just remember, no news is good news. Brianna has been sleeping most of the day. Like I said in an earlier posting, she has her days and nights mixed up. Both Jerry and I have enjoyed holding her while she is sleeping so peacefully. She hasn't needed medication for pain for days. Amazing, isn't it. Now I have the complete story on the infection. She tested positive for both e. coli and VRE. It appears they were growing in her IV lines and are not in her bloodstream. As soon as the infection was noticed, both IV lines were removed and since then, she has tested negative for both. She still has to stay on the antibiotics and will continue to be tested. Let's hope they stay out of the bloodstream because we certainly do not want to deal with an infection in her heart.

Friday, September 7, 2007

Days and Nights Mixed Up

FRIDAY, SEPTEMBER 07, 2007 09:48 AM, EDT
It was so good to see Brianna this morning although she was quite cranky. Apparently she has her days and nights mixed up and was awake all night. After we got here, held her for a little and got her feeding started, she conked out.
Remember yesterday when they told us she had e. coli. Well, they must have had us mistaken for someone else (imagine that) because she does not have e. coli., she has Vancomycin-Resistant Enterococci (VRE), Paul will be the only one who knows what that is. Bottom line, anyone who comes into Brianna's room has to wear gown and gloves mainly because it can be spread from patient to patient by contact. She is on antibiotics but, because of what it is, she WILL have to stay in the hospital until she receives 7 days of antibiotics (specifically for the VRE) which started about jonesing for a home-cooked meal. Jerry and I are so tired of restaurant eating that we talk about what we are going to have when we get "home". I just hope and pray that Brianna doesn't pick up any more germs while here.
We're still working on the bottle feeding, sometimes it works a little, most times she simply doesn't know what to do with the bottle once it is in her mouth. She hasn't lost any weight since being here, actually, she has gained weight because of the tube feeding. Right now she is eating every three hours but by 2, 2 1/2 hours, she is crying for more food!!!
Thank you to everyone for your many thoughts and prayers.
On another note, when we came in this morning, the 16 year old girl was not here. It broke my heart for the family. Yesterday there was a constant stream of visitors, even when we left here at 10:00 last night. We pray that God be with their family to give them strength.

Wrangling that Unicorn

Notice the new picture? Several days ago when Jerry and I went in early in the morning to see Brianna, we pulled back the blanket and got such a surprise...Brianna had that unicorn in one heck of a headlock!!! It was actually placed there to keep her a little more comfortable. Although it sure did look pretty funny. As you can tell, she is quite comfortable now. Her tummy is full and she is feeling so much better. The results came back about the infection and it is E Coli. No surprise again. She had an arterial line hooked up in her groin area and on several occasions it worked its way into her diaper, thus, the infection. That line was closed off as soon as the infection was discovered and she is now doing quite well considering.
In case you are wondering about the 16 year old. The clergy has been here all morning as well as other hospital administrators and a lot of family members. It doesn't look too good.

Thursday, September 6, 2007

Looking Good but other Sad News

When we arrived this morning the nurses told us that Brianna must be tired because she talked all night long. She is looking so good. We're still working on the bottle feeding. Right now she is being fed every three hours but by 2 - 2 1/2 hours she is whining for more food.
When we were here last night a 16 year old girl was brought in wrapped from head to toe. She had wrecked her car. From what we heard, she is paralyzed. The family has been coming in all morning. Her prognosis is not very good. What a sad sight. If only our young drivers could see this, it would change their way of driving.

Wednesday, September 5, 2007

Please God Hear our Prayers

From Sam Knight's mouth to God's ear....may Brianna be drinking out of the bottle today. Well everyone, at the 9 p.m. feeding this evening, I got her to nurse from the bottle nipple. She didn't take much, but all of a sudden it was like she remembered, hey, I'm supposed to be drinking this stuff! So hopefully tomorrow, she will drink a little more at each feeding.
Her disposition has also changed considerably. The antibiotics have really kicked in. Heck, I forgot to tell you the other news, she's been moved from PCICU (Pediatric Cardiology Intensive Care Unit) to PICU (Pediatric Intensive Care Unit). That's because her heart's not the issue anymore. The infection is. We'll be keeping you posted.

Looking Better Already

Antibiotics are a wonderful thing. Especially when they are given intraveiniously (sp?) and sooner than later. Brianna already looks and acts better than she did the last two days. They believe the infection came through one of the two IV lines she had. This morning they cleaned and closed off those lines and put a new one in her other arm. She's been sleeping but when she is awake, making those cute little baby faces and waving her arms all around. Both mom and dad feel better too. Thank you to those signing the guestbook. We truly appreciate everyone's thoughts and prayers.

Brianna has an Infection...very scary

We won't be going home for at least 7 days now. Brianna has an infection. That is what her whimpering was about. We kept asking the doctors and one of them decided yesterday to test her blood, urine, etc. The report came back early this morning. She is on interveinious (sp?) antibiotics.

Tuesday, September 4, 2007

Heartbreaking Sounds

We're all doing a little better today. Brianna has slept most of the day today. Yesterday, she was awake all day long except for a few cat naps and she was making a whimpering noise the entire day too. There was nothing we could do to soothe her. One of the explanations given to us by the doctors was that she was having withdrawal from the sedatives given to her earlier in the week for the pain. It was a stressful day yesterday for all of us. Today, the whimpering is gone but she was wore out from being awake all day yesterday. A speech therapist came in today to feed her and although she still didn't drink from the bottle, she didn't choke on it like she did yesterday. That is a good thing. She did swallow some of the milk that dripped in her mouth. We'll get her there.

Monday, September 3, 2007

Hit By a Bus

MONDAY, SEPTEMBER 03, 2007 05:16 PM, EDT
I don't even know how to start the journaling today except to say that it has been the kind of day that makes both Jerry and I feel as if we have been hit by a bus. Brianna has been doing so incredibly well. So well, in fact that the doctors told us yesterday, she could go home today, if she would start drinking orally from a bottle. Jerry and I felt pretty confident that would happen. It didn't. Actually, Brianna had such a hard time with the bottle, choking, that we were advised not to try again today. The reality with trisomy 18 babies is that they normally do not ever drink from a bottle. They cannot coordinate swallowing and breathing. For Brianna to ever have been drinking from a bottle was another one of those miracles. Now, there are only two options left. 1) feed her through a tube that goes in her nose to her stomach or 2) feed her through a tube that goes through her stomach. Both have pros and cons. We will be meeting with a specialist in the morning to determine the outcome.

Sunday, September 2, 2007

Dear Tommy...

SUNDAY, SEPTEMBER 02, 2007 10:47 AM, EDT
When we arrived at the hospital today Brianna gave us one talking to for not getting there earlier. She was very alert and awake. She is now on minimal lines and we can pick her up and hold her as much as we want. We have an opportunity to feed her with a bottle at noon. Just don't want to tire her out yet. Everything is moving right along. Thanks be to God and our family and friends for such support. We are truly blessed.

SUNDAY, SEPTEMBER 02, 2007 04:09 PM, CDT
More wires are gone. We're getting down to the last one! We have to get her to drink from a bottle though before we can leave. Her throat is pretty sore so it has been a challenge. Nothing we can't handle by now.

SUNDAY, SEPTEMBER 02, 2007 11:13 PM, EDT

Dear Tommy,

Your origami cranes are working. Although we are short of the "1000" cranes that are needed, the ones that we have are working overtime to create their magic. Brianna is doing incredibly well. We were told that the "normal" baby would be in the hospital 7 to 10 days for this surgery. Well, Brianna has been in there 5 days and the only thing keeping her there is the fact that she needs to drink orally from her bottle. And the only thing that is keeping her from doing that is a sore throat from the tubes that have been in her throat and nurses who are feeding her in an aggressive manner. At least that is what we think. Being a petite baby with a petite tummy, Brianna has never drank very much per feeding and they are giving her more than she is used to, through a tube through her nose and before she can digest it, it's time to eat again. Therefore, so far, she has not been "hungry" enough to forego the sore throat and drink from the bottle. Now, mind you, this is only the first day of trying this so....tomorow is a new day and one more day that Brianna's throat has had time to heal and hopefully, she will drink from that bottle. Once she does...home we go. Amazing, isn't she.

Saturday, September 1, 2007

Things are Looking Up

Two updates in one day....things must be going well. Brianna has been in such a good mood. The breathing tube came out and she has been doing fantastic. They also removed the drainage tube from her chest. Imagine this, her chest is approximately 5 inches in width, and 8 inches in length and the drainage tube they removed from her chest was 12 inches long. They're getting ready now to remove the arterial line (that's a line connected directly to the artery in her leg). She is also being fed continually through a tube in her nose. If things continue the way they are now she should be able to have a bottle tomorrow. What a fighter this little girl is.

Finally...the breathing tube has been removed again. Yesterday the sedatives simply didn't leave her body fast enough which left her drowsy most of the day. She was waking up by early afternoon but they didn't want to remove the tube then because of the skeleton night staff. I took some photos earlier but can't seem to get them resized to fit on the page. Jerry is going to work on that later. So plan on seeing some photos later today.
Brianna looks great! No swelling, just petite little baby girl. Both Jerry and I got to hold her this morning too. What a treat!

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.