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!