Day 46

Well....I hate to say, we weren't able to bring her home. But...that's ok. We saw the specialist yesterday & in not so many words, he said, "her seizures are not controlled & it's unacceptable. We must take a more aggressive approach & get them under control, so this is what we are going to do. We will try giving her B6 (vitamin supplement...has been know to cause seizures if she is lacking), if that doesn't work we will try a change in her diet, basically putting her on high fats. If that doesn't work, there is a Valium injection that can be given, much like a diabetic does that may help as well."

I was very pleased with his response & forwardness. He also mentioned that a trip to Seattle might be in our near future. I told Kevin today that if that is what has to be done, then so be it. Whatever it takes to get this all figured out.

One of the side affects to the B6 is sleepiness & she could stop breathing...so because of that they are going to keep her until at least Saturday. They are giving her 3 days on the B6 to see if it makes any difference.

We did room-in with her last night (how great that was). She passed with flying colors, (so did mom & dad!).

Anyways, I will keep you posted. So now we are shooting for Saturday (which is still the end of the week, LOL!)

Thank you again for all of your prayers!

Day 44

I have some GREAT news! Sorry that I haven't written in a few days, I was making sure that the 'good news' kept coming before getting my hopes up! Brianna hasn't had any apnea spells for over 48 hours. She had another MRI yesterday & the blood clot that was originally there, is COMPLETELY GONE! Her brain however has not grown in 3 weeks, so there is some concern there. They tried taking her off of the nasal cannula (oxygen) last night, but she didn’t do very well, so they put her back on at ½ the strength that is was on to see how she handles it.

We are still meeting with the pediatric neurologist from Seattle on Wed morning. Can't wait to see what he has to say, hopefully he can give us some information about her case.

The best news that I have to tell you at this point is --

If we can get her off of the canula, it looks as though we will be rooming in with Brianna in a room to ourselves Wed night & BRINGING HER HOME ON THURSDAY!!!! She will be coming home with an oxygen tank & a saturation monitor, so that we can monitor her better & provide oxygen when she needs it. She will not have to be on this 24/7, only when she isn’t being watched (sleeping).

Please continue to keep us in your prayers, as the next couple of days are going to be the most important. Stay stable Brianna so that we can bring you home!!

I will keep everyone posted!

Jesus Whispered in My Ear Today

By Jackie Whiteker

Jesus whispered in my ear today
and told me how much He loved me,
and then He said He wanted me to know
what a special mommy and daddy He gave me.

Two people chosen solely by Him
to help me be all I can be,
who would always be gentle and patient
and thankful God blessed them with me.

He then said "Dear Brianna remember -
whatever this life on earth brings,
your guardian angel stands watch over you
while I am in control of all things."

He told me that though I'm just an infant
I can tell you both I love you,
by simply looking at you with my bright eyes
and letting my love shine through.

He smiled when I got sleepy today mommy,
and you sang me a lullaby,
and He watched as daddy held me in his arms
and I gently closed both my sleepy eyes.

He said it filled His heart with joy
to watch the three of us
A Father - Mother - and a Daughter
who love the Lord so much.

And then He gently touched my hand
and gave it a loving squeeze,
and I looked up and smiled at Him
as He smiled back at me.

"I bless you Brianna" He said to me.
"I know your every need
That's why I gave you a mommy and daddy
who would love you and teach you about Me."

So thank you sweet Jesus for whispers in my ears
that help me along the way,
and thank you for mommy and daddy,
who thank You - for me - when they pray.


Jackie is a PartyLite friend of mine. She wrote this for a dear friend that she worked with at the time. She and her husband were blessed with their first child on March 13, 1993. Joshua has many physical and mental handicaps as he was born with a syndrome referred to as Trisome #9. This hasn't stopped him from being a joy to both proud parents. He has touched the hearts of so many - including Jackie. I have modified it to fit for Brianna. Thank you Jackie for giving me the strength to get through this difficult time.

~Jamie Aldridge

Day 39 – Valentine’s Day

They adjusted her medication & she actually got some sleep throughout the night. Her apnea episodes are now occurring every ½ hour…sometimes it won’t happen for an hour. This is much better over yesterday afternoon, when they were occurring every 5 minutes. Hopefully it’s the medication that is calming her down. No other news to report as of right now.

Day 38

Well, I’m not sure what to say. Brianna is tolerating breast milk just fine & is getting 60 cc’s every 3 hours thru the G-Tube. That’s the good news. The bad news…ever since the night of the 11th, she has been having apnea spells. She quits breathing & has to be stimulated to start breathing again. She had 8 in a half hour the first night. She went all day yesterday without any problems until last night. She started doing it again. This time, it has continued through the night & is still continuing now. The only thing that can be done about it at this point is play with the medication to get it to work right for her. They are going to increase the dose of Topomax & give it to her every 8 hours instead of every 12 & see what happens. The reality that we may have to face is that medication may not stop what is happening; only time will tell.

We are still waiting for Seattle to get their act together & find somebody that has compatible software to read the video EEG. Dr Pollack said to me this morning that he is sure it will be read, we just have to find somebody that can read it. We are holding off doing another MRI until it is read. If it hasn’t been read by Monday, they will do the MRI anyways. They are hoping however, to have it read so that Dr Millstein has the information before heading up here next Wednesday.

Dr Pollack’s opinion on what is happening:

The insult to the brain is not getting worse, but rather her brain reacting differently as she is getting older because she is trying to process more information now & her brain just isn’t handling it, therefore causing more seizures.

She was awake & alert while I was there this morning & was even talking to me. I just wish she could tell me what was going on. Dr Pollack even mentioned that as he was leaving. He was also showing many signs of sincere condolences. Basically telling me to be patient & that he is sorry for what is happening; without saying a word to me. It was comforting. The doctors have been reiterating a lot lately, that nothing that I did during pregnancy caused this. I guess they feel that I still might be blaming myself. I am past that now. I just wish I could step in & take this away from her.

Day 36

Brianna is doing great! She has only had a drop in oxygen/heart rate ONCE since BEFORE surgery! It happened last night just after they inserted a new IV, so they are relating it to that. They started giving her medication through the G-tube last night. They have also taken her off of the Dilantin & resumed Topomax. They substituted the pain medication she was on with Tylenol & she is tolerating that just fine.

I spoke with Dr Davis last night & I asked when it looked like she might be able to come home if she tolerates feedings & doesn’t have any more drops in heart rate/oxygen…he said “we hope within 7-10 days.”

Dr Jolley (surgeon) was there when I got there this morning. He is still very pleased with the progress that she is making. They are starting her on Pedialite today. She will be fed every 3 hours & the first 4 feedings will be 20 cc’s, then they will give her 40 cc’s twice. If that goes well, they will start giving her breast milk & will gradually increase her feedings back up to 85 cc’s.

Kevin & I will also be meeting with Dr Brennan today or tomorrow, to discuss other possibilities that could be causing the seizures. Speaking of seizures, she didn’t have anything but mild twitching of her wrist when I was there this morning (since Topomax was started again!) We are pending the results of the Phenobarbital level check. Want to make sure that doesn’t drop again.

The only disturbing thing this morning, was there was nowhere else to put her IV (hands & feet have been over-poked!) So they had to shave part of her head & put a short-perk there L. She won’t be getting any medication through the IV so it shouldn’t cause any bruising like it did last time. They did however save the hair for me to put in her baby book! I joked with the nurses & said they were just trying to make her look more like her daddy!

Day 34

I don't have much news to give everyone right now (I guess that's a good thing!) Brianna is doing very well. She is VERY stable. She hasn't had any breathing or heart rate problems since before surgery. She is completely breathing on her own & she no longer has any tube in her nose!

I just called the hospital & she is wide eyed & being very social. I am going to take in a mobile for her to look at. I have one of those butterfly developmental things that is attached to the side of the crib already there...but she can only look at that when she is on her side & she loves it. Don't know why I didn't think of bringing in the mobile earlier. DUH!

Anyways...they are keeping up on her pain medication now & she looks MUCH better.

I must say...I got a feeling yesterday afternoon before seeing Brianna last night. Must be my maternal instincts. I feel like she is going to pull through all of this & be just fine. I haven't felt this way the entire time...so it has to mean something. When I saw her last night, my feelings proved to be true because she looked great.

Keep those prayers coming...I believe they are working!