Released

We have been released from the hospital. First off, I was incorrect about Bri's oxygen level being low this morning...it wasn't. Bri's toes are so small that the sensor was loose and once the nurse came in and taped it on securely everything was good. The doctor who came in a little while ago said that she suspects reflux. So, I will thicken up her formula with rice cereal and be extra careful with the oral feedings. Life goes on, one day at a time.

A big thank you to Cathy, Trish and May for their postings of Brianna on Annabel, Alyssa and Vera's blogspots. Thank you to everyone who emailed Jerry and I personally for your thoughts and prayers. We are so thankful for all of you.

Good Morning

We hope to be discharged today. Brianna has not had any breathing issues since our stay although her oxygen saturation level tends to be in the low 90's. This morning the OS alarm has been going off because it has been fluctuating between 86 and 93. Yesterday she had an EEG (the first) to check her brain waves and to see if the breathing issues are being caused by seizures. No report back yet on that one. They also performed another EKG and it appeared the same as the one that was performed in Florida Hospital two weeks ago.

I posted a new video yesterday of Brianna taken by Jerry on his iPhone on our YouTube channel, BSBotts. As usual Brianna has been happy-go-lucky the entire time.

Thank you to Grandmother, Aunt Sonya and Uncle Joe, Aunt Judy and Uncle Paul for coming to visit little Bri while in the hospital.

I haven't been crying as much, the good Lord has reassured me that she is in his hands, the best care of all.

Thank you God for one more day.

Here We Are...

Back in the hospital again. Early evening Brianna had another episode with breathing. One minute just fine, the next, turning pale, yawning for oxygen and becoming extremely lethargic. On top of that we are out of town visiting my family in North Florida. Off we go in the ambulance to the community hospital and 8 hours later transferred to Sacred Heart Children's hospital in Pensacola. After spending 5 hours in their Emergency Room, we are finally in a room, complete with hospital crib, twin bed AND recliner. Wooooo Hooooo. Maybe we can get some sleep.

Don't really know what to tell you about what is happening because we really don't know. Last week we thought it was pulmonary hypertension, then we were told that it was not, now we are being told that it is. Personally, the diagnosis makes sense giving Brianna's behavior.

I need to go now because I am tired beyond words. Jerry is already snoring away, and, I just don't know what to say about our little Bri. We so hope and pray that this is not the beginning to the end. We just love our little Sugar Bear so much and the thought of her not being here with us. well, it must makes us cry.

Of course I will post when we know more.

Going Home

We are very happy to be going home although the reason for Brianna's episode is still unclear. After the cardiologist released her last night, we thought for sure it was an acute reflux attack but this morning the GI showed no reflux. I have to say that we know she has reflux, always had. They have been administering Pepcid so perhaps that is why they didn't see any during the procedure. Anyway, the plan is to adjust the pepcid dosage, thicken her formula and hopefully that works. There is no doubt that God continues to keep Brianna here for a reason and we will continue to give her as much love and attention as ever.

Brenda and Jerry

I feel the need to post something

although I am utterly exhausted. Monday a week ago we took Brianna for a routine checkup to her cardiologist. All were surprised including the doctor when it appeared that Brianna had pulmonary hypertension, ultimately a death sentence. We were waiting to meet again with the cardiologist after he met with other specialists to review Bri's findings on the EKG. In the meantime, Tues evening, we had a scare, and a big one. Bri was good one minute and the next, with no warning whatsoever, she coughed a little cough and suddenly couldn't catch her breath, it was like something was stuck in her throat but I knew there couldn't be anything there because I had fed her by mouth approx 40 minutes earlier, then given her a bath and was sitting with her on her bed, getting ready to dress her. So after coughing for a little, her little mouth started to turn blue, then her face, then her tongue and the inside of her mouth, her eyes rolled back in her head and all I could say was no, no, no, Bri, you are not going to do this. Yeah, like she was doing it on purpose. She continued to cough and went back and forth between blue, gray and ashen. When I realized she might not pull out of it, I called 911.

Jerry and I both were very worried that this proposed pulmonary hypertension was the beginning of the end for Brianna. Bottom line, even though I would love to go into more detail but am so very tired....late today (Wednesday) after another EKG by her cardiologist, lots of prayers by family and friends, there was no indication of hypertension whatsoever. Bri has been tentatively diagnosed with acute reflux, which can be fatal if not treated. Apparently, acid refluxed up and back down into her lungs and essentially, she was drowning in her own stomach acid. Tomorrow morning an upper GI will be performed confirming the reflux. There are medications and also a procedure that can be done to help this problem. Will let you know more tomorrow. For now, zzzzzzz's....time to catch me some. Good night all. Oh, Happy First Birthday to Alyssa. You go girl!!!

Too Long

Brianna and her daddy reading the paper together. Too cute I say.

Yes, I have waited too long to post but as Annabel's mum said, when things are going good, we just keep going and enjoy the moments.

I don't know what got into me about 3 weeks ago but all of a sudden I decided it was time to move Brianna out of our bedroom and into her room. The delay has been because our house is a split plan and her bedroom seemed sooooooo far away. So, while my husband was away on business, I moved Brianna into her room. The first night, she slept like a dream, me, awake all night...constantly checking the monitor to make sure it was working. Brianna has adjusted very well. She seems to sleep better and longer in her room. Although Jerry and I miss her presence in our bedroom, it was time to make this move, for all of us.

Oh, and I also found out that Brianna will have a school teacher coming to our house in the Fall to work with Brianna. Isn't that great?!!! But what is even better is that when Brianna turns 3, 3? we still can't believe it....she can attend elementary school, yeah....I know. Wow, huh. It would be the regular school hours, Monday through Friday, 8 to 2, but, she's not going to go 5 days a week all day, maybe 2 days a week, half a day, to start. The class is staffed with a nurse and appropriate teachers/helpers to assist with special needs children. How exciting...Brianna attending school.

And here's a couple of pics for you. Using my camera for the father/daughter pictures makes me want to get it out and use it a lot more.




And some more pics of when we were in Chicago at The Hancock Building. The weather was beautiful, in the 80s and very little humidity. Brianna was enjoying the sunshine as you can see. I love these pictures. She is so happy and gorgeous and her dad is so honestly happy with her in his arms.



Loving the Sunshine On My Face