Day 25

She was wide-eyed & alert today for her 8:00 feeding. Unfortunately we didn’t have any luck feeding her. She showed a lot of interest in sucking but she is having problems swallowing. It was decided today that we not try & feed her but once a day until we are confident that she is able to swallow again. Not sure why all of a sudden this is a problem, wondering if it might be the drugs that she is on. If it’s not one thing it’s another. Poor thing.

Got her 2nd bath today by her favorite evening nurse Michelle (or is it Brianna is Michelle’s favorite!)

Day 24

The 3rd drug that they have her on now seems to be working. There was very little seizure activity yesterday. Didn't have any luck trying to feed her yesterday, didn't have much interest.

Day 23

Her seizures seem to be getting better. She consumed 15 cc’s by bottle at her 8:00 am feeding today. Had a chance to speak with the doctor & they want to run another test, this one requires more blood drawn & a spinal tap. She has an appointment scheduled for Feb 20th at 8:00am to be seen by a pediatrics neurologist when they come from Seattle for their quarterly visit. One of the doctor’s talked to a pediatrics neurologist yesterday & he recommended another drug to try. So now she is on 3 medications.

They have sent her MRI & EEG films to Seattle for further review (finally!)

When I got there this morning, the nurse informed me that they had to move her IV again, and this time, they put it in her forehead L. But when they pushed the drugs through, it caused her forehead to bruise, so now she has a different type of IV in her foot which requires her to have a constant substance going into the vein to keep it open. Poor thing.

Her range of motion still continues to progress, which is a good thing!

They have also put her back on the every 3-hour feeding schedule because her glucose was down. I don’t think she likes that at all…she would much rather have a 4-hour feeding schedule! So would her Mom!

I think that's all of my news for today, we still don't have the results of yesterday's EEG (yes they did another one...make that her 4th).

Day 22

I haven't posted in a few days because things seem to be getting worse. They have drugged her so much this weekend, it's crazy. She is now taking 2 drugs, Phenobarbital & Dilantin.

I just called the hospital to see how she is doing & this is the first time she is actually alert since Friday. The test that she had at the other hospital on Friday confirmed that they are truly seizures & that her brain is causing them. They also say that this likely started in the 2nd trimester. During the migration of the neurons, the brain did not form correctly. So basically the wires are crossed & since they don't know how to communicate it's triggering seizures.

We have no idea what this means long term. The doctors say that most of her brain is malformed. Talk about a complete change in life for her parents. As if parenting wasn't going to be hard enough already. She is absolutely perfect in every other way....why did it have to be the brain? It's heartbreaking.

They have scheduled her 4th EEG (looks at the brain waves), to see what kind of changes there are now that she is so drugged up.

There is also supposed to be a specialty neurologist to see her today (I think they have their wires crossed, because it's supposed to be a phone call.) Guess they'll figure it out, because they're right and I'm wrong. ARGGGG

Anyways, it's not looking good & we still don't really have any answers...it is going to be a one day at a time diagnosis...it's up to her how she will turn out & how much she will be affected by this.

So that's the latest...no good news on my end.

Day 19

Good News Everyone!

She had an MRV test done yesterday (like an MRI only they put dye into the blood stream so you can see the blood flow & it shows a better picture of the brain).

Anyways...the lesion that she has is no longer clogged & there is blood flowing through it! Which means we have a better chance of her having a full recovery from the trauma that she has suffered!! THANK GOD!

She was also wide eyed & alert last night & drank 30 cc's (1 oz) in 15 min with the bottle!!! That is the best progress yet!

Her seizures are still continuing (if that's what they are). She was transported to another hospital last night for a 6 hour test today. This should once & for all tell us whether or not the twitches she is having are seizures or just normal movements (much like a reflex) because the central nervous system is not developed yet.

Thanks to all who are praying.

Day 18

Unfortunately I have some bad news everyone....it seems as though Brianna has taken a turn backwards and at this point we are not sure why. Her seizures have kicked back into full swing & she has stopped trying to eat via the bottle. Just when I thought we were making great progress...the door gets slammed in my face. I'm not giving up hope though...there has to be an answer somewhere & soon.

This week has been very trying & frustrating. I made my voice heard last night to one of the doctors and hope that things will start happening a little faster on finding out her prognosis.

Please continue to keep all of us in your prayers.

Day 15

Just thought I would give everyone a quick update. Brianna is pulling through! She is consistently awake at feeding time & is consistently consuming 10 cc's by bottle each time as well. We are going to try a faster nipple in 2 hours & see how she handles it...hopefully she will take to it just fine & consume even more! She has the sucking motion down pat...its just getting her to do it long enough to take a full feeding. THANK GOD!

As far as her hyper tonic muscles...they are improving remarkably. Within the last 2 days alone there has been huge changes. The developmental therapist came today & was totally impressed with her range of motion & her ability to suck. She told me "good job Mom...you are doing an excellent job working with her". WOW! That made me feel so good. All the hours that I have put in are finally starting to pay off.

Thank you to all of you for your prayers & please keep them coming.

Still pending test results, so we don't have a prognosis yet on what is causing the seizure activity...I will keep you posted on all of her progress.

Day 12

I sit here crying like a blubbering fool. Thank you all so much for your prayers. I must say the power of prayer works wonders. Brianna was awake at all 3 feedings that I could be with her today (12, 4, & 8) she made a great attempt to breastfeed. More so today than any other day. Keep those prayers coming...each one makes this bond that much stronger.

msgmc ~ I hope that I am so lucky. She is also on Phenobarbital & it appears to be controlling her seizures. She is also having hyper tonic muscles (which means that her arms & legs don't have much flexibility, but as you exercise them, she loosens up). They are running tests to see if she has a muscle disorder....I pray they come back negative.

The eye doctor came in today & had her eyes dilated...he took a look at the nerves behind her eye to make sure none of them were damaged. He said all looked great. Thank God. The doctor on duty tonight said that was a very good sign.

Each test that they run...comes back looking positive. I am very grateful for that...but at the same time hope that they find a prognosis soon.

Thanks again for all of your prayers! I will keep you updated.

Had her first bath today – she looked like she really enjoyed it. Brenda, her favorite daytime nurse (I mean, the daytime nurse that says Brianna is her favorite!)

Day 11

Kevin & I are proud new parents as of Jan 6th. We had a home water birth; labor & delivery was perfect. 8 and ½ hours of labor, & she was born. However, our daughter was showing seizure activity & it was decided to go to the hospital for further evaluation.

She has been in Newborn Intensive Care ever since. They have stabilized her seizures with medication. The problem is, the medication makes her very sleepy & she doesn't wake up very often for me to try & feed her, so she has a feeding tube in her nose.

They are running lots of tests to determine why she is having seizures & to also determine the extent of the brain damage that she has suffered due to the seizures.

They have pretty much said she can't come home until she is feeding by mouth. Everyday there seems to be a little more improvement (when I can catch her awake).

Please pray for my husband & I, to give us the strength we need to get through this.

Please pray for our new baby girl Brianna, that the tests come back normal & that she starts feeding on her own.

Thank you for your support.

Brianna Renee's Journey Begins - Day 2

Hello Everyone! Kevin & I are pleased to announce that our baby girl Brianna made her appearance on Sunday, January 6, 2002 at 10:29 am. She weighed in at 5 lbs 14 oz, was a tad under 19” long, & is absolutely beautiful (at least we sure think so!!)

Labor & delivery went very well & lasted for 8 ½ hours. I had her at home in a big portable tub with NO DRUGS!! Unfortunately things didn’t go according to plans & we made the decision to go to the hospital about an hour after she was born. Without going into much detail now, please know that we are both doing well. I have spent the last 2 days at Providence hospital to be close to Brianna. She is currently resting comfortably in intensive care. That is the best place for her to be right now & she is being very well taken care & we hope to have her home in a few days.

Please don’t worry & just keep us in your prayers. They are running some more tests & we hope to then be able to bring her home. When things calm down a bit, I will send another email giving more details. As for now, we are spending lots of time at the hospital comforting her & soaking in all the joys of being new parents!!