1/8/02 – 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!!

1/17/02 – Day 11

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.

1/18/02 – 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!)

1/21/02 – 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.

1/24/02 – 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.

1/25/02 – 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.

1/28/02 – 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.

1/29/02 – 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). 

1/30/02 – 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.

1/31/02 – 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 2^nd bath today by her favorite evening nurse Michelle (or is it Brianna is Michelle’s favorite!)

2/1/02 – Day 26

Had a little progress this am feeding her.  She seemed to be swallowing a little better & wasn't so congested.  Only took about 8-9 cc's though.  Turns out there was some irritation, when they checked to make sure all of her food was digested before her 8:00 pm feeding, they pulled old blood out of her tummy.  We are guessing that happened when they put the catheter down her throat to suction out some of the mucus on Wednesday.

It also dawned on me last night, that what she has is probably a cold!  I had one last week, started about Tues/Wed, Kevin started showing signs of the cold about the same time Brianna started having congestion.  So that's probably all it is!  And since today was better in the amount of congestion, she may be getting better!  Here's hoping anyways.

Talked with Prick Doctor last night.  He spoke with Seattle about her MRI & EEG yesterday afternoon.  They aren't so sure that there is a good amount of blood flowing through the blood clot that she has in her brain, they (Seattle) are going to look at it a little closer.  They also agreed that her brain is smaller than normal.  I asked if the brain could catch up to her, Dr Jacob said if her head continues to grow along with her body than that is a very good sign.  It had grown .5 cm within a week & he wants to wait & see what it measures next week.  If it grows .5 cm every week, then he would be very happy about it.  So that is what we are striving for!

They (Seattle) have only looked at the EEG prior to the Video EEG (also prior to the seizures kicking in full blown again).  They didn't see any seizure like activity on that one (nor did the folks here).  It wasn't until the Video EEG, that the movements were determined to be seizures.  Seattle hasn't taken a look at it yet, hopefully they will today.

She weighed in at 7 lbs 6.5 oz last night!  Growing like a weed!

2/2/02 – Day 27

Of the 83 cc’s she is getting, Brianna took 45 cc’s in 30 min at her 4 am feeding!  We were all so excited!  Unfortunately she hasn’t been very consistent.  Her 8 am feeding was only 20 cc’s.  But it’s not always the amount that she takes, it’s the effort.

The nurse discussed getting a gastrostomy tube put in her stomach.  She feels that it will be a while before Brianna is taking full feedings on her own.  We are getting closer to her coming home & having the surgery will cause her to stay in the hospital for another week.  So the sooner that we decide to do it we will be one step ahead when she is ready to come home.  After seeing her progress quite a bit this weekend I was a little hesitant on doing the surgery, but since she isn’t consistent, it just might be the right thing to do.  Then I can work on her feedings on her own schedule (when she is hungry) rather than their schedule.

Clipped her fingernails for the first time.

2/3/02 – Day 28

Today is her 4-week birthday.  My Mom & Dad came to the hospital this morning to take some ‘birthday’ pictures.  To see them go to http://www.camalaska.com/brianna/brianna/htm.  She is so incredibly cute!  Not much success on her feedings today, but that’s ok.  Everyday we are one step closer to bringing her home.

2/4/02 – Day 29

Spoke with Dr Jacob today, we have received some of the results from the lab work they sent to Seattle 3 weeks ago & they are negative!  YAY!!!  He is going to call Seattle again today to find out if they have looked at the Video EEG.  He also took her off of the Dilantin this morning & increased the 3^rd medication (Topomax).  They are getting more comfortable that they have her seizures under control & Dilantin isn’t a take home drug, so they want to see if Topomax will fill in for it.  If that goes well than they will remove the IV.  We are really getting closer to discharge.  I just hope we don’t have another setback.  Dr Jacob also spoke with Dr Jolley (the surgeon) to set up a time for us to meet with him & discuss the G-Tube.

2/5/02 – Day 30

When I got to the hospital this morning, there was a bit of bad news to be told.  Brianna started having seizures again.  She had had one just before 8:00.  And had a drop in heart rate about 8:10 when I was there.  Spoke with Dr Davis, the last Phenobarbital check was the 30^th, they are going to run another one today.  He’s not so sure they were really seizures as she is very calm now.  Going to hold off assuming that it’s because of them stopping Dilantin, as its too soon for the medication to have worn off completely.  I’m just getting back to work at 10:30 & she didn’t show any signs of seizures from 8:10-10:20, so that is a good sign.  He also said that if all goes well with the surgery & she continues to be stable (aside from this morning) he suspects she will be able to come home within a week and a half or so.

Dr Jolley came & spoke with Kevin & I about the G-Tube.  He agrees with the neonatologists in that her feeding issue is probably long term (months to a year at least) & that the G-Tube is really the best thing for her.  He also said that sometimes having the tube through the nose can be a factor in her not swallowing, because the muscle in the esophagus contracts & can cause issues.

They are going to do an Upper GI at 11:00 this morning.  This puts fluid down her throat & they take x-ray pictures as it goes down.  This will show them if there are other issues that may be causing her not to suck/swallow, like a blockage in the esophagus.  He was very informative & we have a meeting scheduled for Noon tomorrow to discuss in detail what her needs are & what side affects may pertain directly to her because of her condition.

If everything checks out ok she will have the surgery Thursday morning.  The surgery is considered major & she will be under general anesthesia.  The surgery takes about 1 ½ to 2 hours & then she will spend 2 hours in surgery recovery before going back to NICU.

We did not attempt feedings this morning because of the Upper GI test.  She will not be fed until after the test.

2/7/02 – Day 32

Today is surgery day. The results of the upper GI came back yesterday & it's a good thing we did that. Come to find out a 1/3 of her stomach is in her chest (hyatal hernia (spelling). This could be contributing to her breathing issues & eating issues. Here's hoping anyways. Doctors say it's a good chance that's what has been causing it, but because of her central nervous system issues, that may still cause it.

So the surgeon will be fixing that, inserting a G-Tube, & fixing the valve to the esophagus because it tends to be weak so might as well fix it while he is in there.

Kevin & I are getting pretty impatient. We are definitely starting to lose a little strength. Hopefully it will pass & we will stay strong. We are pretty irritable right now. Luckily we aren't venting AT one another, but rather WITH one another. That's all we need right now, is being at each other's throats!
It's getting tiring that's for sure. Especially when there is more bad news to be told.

We have however received all pending test results & they have all come back negative. YAY!! I am grateful for that, but at the same time, I just wish we had some answers.

Say some extra prayers today for all of us. Her surgery is at 3:00 pm EST. I'll let you know how things went.

2/8/02 – Day 33

Surgery went very well.  The surgeon didn’t find anything that he didn’t already know about (thank goodness).  It started right on time & she was back in NICU 2 hours later on her way to recovery.  She had no problems tolerating the anesthesia either.  It was quite upsetting to see her at first; in fact I had to sit down.  She was paler than usual & looked to be in pain.  That was heartbreaking.  They gave her some paid medication, but you can tell that she is uncomfortable when the paid meds start to wear off.

Today her color was much better.  The surgeon was there checking up on her when I got there.  He is very pleased with her recovery so far.  Unfortunately she isn’t able to have the Topomax medication for another 48 hours because it’s not an IV & she can’t have anything going into her stomach.  I sure hope her seizures don’t get out of control again during this time.

She opened her eyes and looked at me for a while.  She looked sad to me.  I really wanted to pick her up & hold her.  Boo hoo.  Anyways, had a little release last night & cried my eyes out while visiting my Mom & Dad.  That made me feel a lot better.  My mom said that I needed to quit nursing & go get really drunk!!!  Boy I would feel a lot better then!

Well I think that’s all the news to tell.  Thanks for all of your support through this trying time for us.  It really means a lot to us.

2/9/02 – 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!

2/11/02 – 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!

2/13/02 – 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 11^th, 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.

2/14/02 – 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.

2/19/02 – 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!

2/21/02 – 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!

2/24/02 – Day 49

Hello everyone!

I just wanted to send you a quick note & let you know that Brianna IS HOME!!  We arrived at home about 8:00 Saturday night.  She is doing very well & I think she really enjoyed sleeping in her own bed!  She slept all night long – WAHOO!  She got her first bath at home today and I think she liked it!  Now is the time to come see her…she’s all clean!  HA HA HA!

Thank you to all of you for saying prayers for us…looks like they did wonders.  I’ll email again later.

3/1/02 – Day 54

She had 3 bouts of apnea within 2 hours last night, each lasting about 30 seconds, and had gone so long that she turned blue. I was home alone for the first spell and was able to get her going again by stimulating her. A couple of PartyLite consultants were with me the second and third spell. I was on the phone with the hospital while Brianna was being held - again, they were able to massage her back into breathing.

Brianna & I took an ambulance ride back to the hospital & Kevin followed behind.  Brianna has been readmitted.

It did happen 2 more times at the hospital, which I was somewhat thankful for. It allowed the nurses & even one of the doctors to see first hand what was going on.  She is on an oxygen/heartbeat monitor at home, but I knew something was wrong before the alarms sounded.  At this point we haven't a clue what is wrong. She has been stable the rest of the night after the last 2 episodes.

They are checking to see if it's RSV (Respiratory Synergis Virus). Which is a virus that is serious & can cause apnea. She was exposed to this in the NICU before she left & was treated with a shot (that cost $1000). But the doctor told us last night that it's not 100% sure to fight off the virus.  I'm hoping its something as simple as that & nothing more.

The good news is when they measured her head last night; it was up .5 cm, which is EXCELLENT since it hadn't grown in 4-5 weeks.

They are going to do another CT scan today & another chest x-ray to see if something has changed. There is talk of doing another EEG as well.  And of course, Seattle is coming closer & closer to us.

I'm starting to get a little worried. How long is this going to last? Will I be able to go back to work? Bills still have to get paid & on top of all of this, we were/are in the process of building a new house. What timing.

"God please help us get through this & get Brianna stable before May 20th so that I don't have to worry about paying the bills & can return to work, knowing that she is going to be ok."

I asked the doc last night if this is won of the hardest cases for them to have to solve....his response...it's pretty high up there.

3/3/02 – Day 56

Brianna had 2 other apnea episodes Friday night.  The RSV test has come back negative.  We did find out that her blood sugar level was WAY low, 22, & should be between 80 & 100, which may have caused the apnea.  We are also considering that the pyridoxine that she is taken could have caused it as well, it is one of the symptoms.  The CT scan came back with no other new findings.  Still awaiting the results of the EEG.

Her seizures are NOT under control & have progressively gotten worse the last 2 days.  We have begun making arrangements to take her to Seattle for further care.  We are waiting to talk to Dr Milstein in Seattle on Monday, to see if there are other medications he would like for us to try before getting on the plane to come see him.  He is the head pediatric neurologist & came to visit her on the 20^th of February.  He recommended some treatment that can’t be done in Anchorage.  If he says the magic word, we will be heading down there Monday or Tuesday.  Who knows what’s in store for us then or how long we will be there.

I'll try to send something out before going to Seattle, if that is what happens,

3/8/02 – Day 61

Finally getting on to a computer.  I know that Kevin sent out an email this morning, but it didn't get to 'everyone'!

Everyone arrived in Seattle ok.  Brianna & I came down on the private jet, but Kevin had to catch a commercial flight because there wasn't enough room on the plane for all of us.

Brianna is in VERY good hands.  I am very impressed with the doctors & nurses.  They seem to be proactive rather than reactive.  Within an hour of arriving at the hospital, I had already spoken with about 8 people regarding her care.  Most importantly the chief neurologist.  He was not impressed with her seizure control & order more medication immediately.  They kept pumping the medication until the seizures were stopped.  And I mean PUMPED!  The poor thing is still so drugged she hasn't really even been awake since we got here.  But sleep is good, she really needed to give her brain a rest.

Because of the high dosages of medication, she was unable to exchange oxygen & carbon dioxide effectively, so they have intubated her (tube down her throat to breath for her).  They have started to wean her off of this slowly, but currently is still on it.  She is retaining a little bit of fluid, but that is one of the side effects of the Phenobarbital, especially at the level she is currently at.

They are running more metabolic tests to try & find a diagnosis.  They have also suggested that Kevin & I speak with a geneticist (once some of this is figured out), to determine what the chances of this happening with future children may be.  Keep in mind, at this point we don't know if it is a genetic issue or not.  This would be a WAYS down the road.

They have started giving her breast milk again today & will slowly increase it if she tolerates it.  Oh...some good news (I think).  It appears that her brain is smaller all around instead of portions of it being smaller.

Well I think I am starting to ramble a bit!  Kevin & I are doing well & are staying in a room here in the hospital, until the Kids Village is available.

3/11/02 – Day 64

No diagnosis as of yet.  They have many tests out but take a while to come back.  She is on a really high dose of Phenobarbital.  The normal level is 20-40, hers is at 100.  As a result they had to put her on a respirator & they are hoping to get her off of it tomorrow.  The first time they tried to take her off, she didn't handle it very well, so hopefully this time it will be better.  They are going to do a skin & muscle biopsy to determine a specific metabolic disease.  They are also looking into doing another spinal tap for another type of disease.  This will probably not take place until sometime next week.

Her seizures are currently under control & the neurologists are very pleased about that.  The first few days she was pretty doped up, but the last couple of days she has had some alert times & the nursing staff seems to be very impressed with her interaction.

The goal is to keep her seizures under control by finding her maintenance level.  Once they feel they have enough tests in process & she is stable, she should be able to come home.  Some of the tests that they want to run take 8-12 weeks to come back, so it will not keep her here.

I will say however, that we definitely made the right move coming here.  They are much more proactive instead of reactive.  Even though we don't have any answers (and we may never), at least they are testing for more rare diseases & not just settling.  This is the first time her seizures have been completely under control, that alone is an accomplishment.

Kevin is planning to fly back Wednesday afternoon.  I am staying here with Brianna for a while to hopefully give them more time to get some answers.

3/12/02 – Day 65

Brianna was taken off of the respirator today.  She is doing GREAT!  She is having a hard time dealing with her secretions & has to be suctioned quite frequently.  We are hoping that this will pass & it's just due to having the tube in her throat & the swelling.  So she may just be a little reluctant to swallow.  (Keeping our fingers & toes crossed.)

We spoke with the attending neurologist today & so far everybody is very pleased with her progress.  They have many tests out & one of them has already come back (negative!)  If all goes well, our stay here will only be a couple more weeks.

That's all of the news for today.  Going to get some dinner now.

3/16/02 – Day 69

I only have a minute as I haven't showered yet & I'm starved!  

Brianna is still doing very good.  I haven't sent out any updates
recently because there hasn't been anything to tell about.  I caught
her awake this morning & she was up for 3 hours.  It was beautiful.  
She talked away & looked at me the whole time.  I've been waiting for
that to happen again for days.  Brought tears to my eyes.

Gave her a full bath last night to wake her up a bit.  Then massaged her & did range of motion.  She really loosened up & enjoyed it.  I think massage is a good thing for her.  In fact I'm going to get trained on how to do it the right way on Monday by the physical therapist.  She has started to hold her head up a little bit too.  Way to go girl!  She is still having some problems maintaining her secretions, but she is starting to master coughing so hopefully that will help.

I bought a baby Bjorn front carrier yesterday at Babies R Us.  Put her in it last night while I was cross stitching (yup took that up to...switch between knitting & cross stitching!)  It was great.  She was sleeping the whole time, but it allowed her legs to be spread apart a bit & kept her arms out too.  She seemed to be very comfortable & so was Mom.  My arms didn't go to sleep from holding her & I could do something else while still keeping her close to me.  It was great!

I am holding up fairly well, just staying positive & hope that we will be back home soon.  Well...tummy is growling & hair is feeling pretty gross!  So I will email again later.  Feel free to email me anytime...I look forward to getting emails from
everyone.  Brightens up my day & makes me feel a little closer to home.

3/22/02 – Day 75

Things were looking really good yesterday...now they aren't.  I am so tired of this emotional roller coaster it's about to drive me nuts.  Brianna has been put back on a machine that is like a ventilator.  It's called a nasal CPAP (constant positive air pressure).  Because of all the medication that she is on, it has made it very difficult for her to breathe on her own.  This was the step to be taken before putting her back on the ventilator.  On Wed they had to add another medication to her list because she started showing signs of seizures again.  This has completely 'knocked' her out.  She hasn't been awake since 6:00 Wed night.  This was my wake up call this morning...I am completely devasted.  We were on track to be coming home Monday or Tuesday...now I'm feeling we may never get home.  I am trying to keep my chin up & be positive that she will pull through this just like she has all the other times...but it is really wearing on me.  I have really begun to think about her quality of life.  How long do we continue to help her?  Are we really helping her or making her worse?  So many things to think about.  Nobody deserves to live the life that may be in store for her, but how do you, the parents come to that decision.

Since they have put her on the CPAP, she has started to turn back around.  Let's hope that it continues.  I will send another update today or tomorrow.

3/24/02 – Day 77

I did go out yesterday...took the bus to Northgate, went to a PartyLite regional & saw the new spring line!  Also went & got my hair permed...something that I've wanted to do since before I found out I was pregnant.

I wanted to get a manicure & pedicure...but they are booked until Wednesday.  I scheduled the appt even though it will be at night...not to keen on traveling at night...but I figure the bus should be safe.

Now about Brianna:
She is doing better but not great.  She is no longer on the nasal CPAP.  They took her off of the 3rd medication they had her on & she is starting to have awake times (kind of)...but her seizures are back.  She also has to lay on her stomach all of the time because her secretions get too bad & she desats.  Poor thing...she just looks so helpless.  Her knees are starting to get a little sore too.  :(

I finally got to hold her for the first time in a couple of days yesterday.  She seemed to tolerate it fairly well.  I sure missed being able to hold her & giving her whatever comfort that I could.

At this point I think the doctors aren't sure what to do about her seizures.  We just have to keep playing with her medications, which is very time consuming.  I haven't given up hope...just catch myself wondering what life is going to be like.

In other news...Kevin is home working with my dad today in putting in extra cable, phone, & network cables in our house that we are building.  The house is coming right along.  Never know...maybe I'll be in Seattle long enough so that when I go home...I'll be going to our new home.  Gosh...I hope not...that would be a lot of packing for Kevin to do by himself (especially all the PartyLite stuff that's in my office!)

Well...I'm going to get some lunch.  'Talk' with you all again soon.

4/1/02 – 12 Weeks 1 Day

Well everyone....we made it home! We took a commercial flight out of Seattle last night & arrived at 10 pm Easter Sunday. My wish was to be home for Easter...well I didn't get to celebrate the holiday at home...but I was for sure home before the day was over! 

Brianna did a complete turn around the middle of last week & is doing great. She is still having some seizures but they are much more controlled now then they were when we left for Seattle. 

There were a few road blocks on our way home that I would like to share with you...make you laugh a bit! 

We were in first class & so far I was able to handle things on my own. We are in the air & it's time to feed her & give her medications. Well...some of the medications are tablet form & must be crushed & another is liquid. Since she is still fed through a tube in her stomach this can be a little tedious. I thought putting them down together & not letting them dissolve a bit first would be ok. Luck would have it...they got stuck in the tube. I tried to plunge them down, but Brianna reacted & out came the meds...all over her. The flight attendant kept asking me prior to this if I was ok & if I needed any help...well...now I did FOR SURE! We had to ask the gentleman beside me to get out of his seat & stand while the attendant helped me. Here he is...in first class for a relaxing ride...NOT! I felt so bad...but he was ok with it & knew that she was more important then his comfort. So we got all of that under control & went on our marry way. 

The reunion with Dad was great...since Brianna still requires oxygen, he was able to come onto the plane when we landed to switch out the tanks...the smile on his face was priceless, it was a great moment. 

On to the next story! 

So I'm in baggage waiting for Kevin to come with the truck...and all of a sudden her oxygen tank fell over & the piece that the tube fits on breaks! OMG Now what?!?! That was a stressful moment. We were able to get the tube to fit over the nut as long as I held it tight. So that's what I did all the way home. Talk about STRESS! 

Next story ~ 

Coming home was stressful too. She needed to be fed again, we were all tired, she needed to be suctioned (hadn't cleared her secretions in 9 hours so she was desating quite a bit), and I hadn't pumped in 9 hours! Of course most of this I had to take care of because Kevin didn't know where I had packed everything. More STRESS! Calm Jamie, Breathe!!! 

Next Story ~ 

We finally are getting to bed, Kevin has to get up in 2 hours, so he is quite tired (as am I). I get Brianna in her bassinette & start her feed....luck would have it again! The tube came away from the syringe & milk went all over her & the bed. ARGGGG KEVIN help!!!! 

Finally got her situated again & we were able to go to bed. Talk about a welcome home party! YIKES! Once in bed, stress left & we went right to sleep. 

Anyways...hope you all enjoy my stories! 

Thank you to all for your continued prayers...though the journey is far from over I hope that we are at least away from in-patient visits! 

4/19/02 – 3 Months 13 Days

Brianna is still at home & doing fairly well. Since we have been home, we have had 1 pediatrician visit, 2 visits to the surgeon that did her feeding tube surgery, & 2 visits to the lab for blood work to make sure her Phenobarbital level is where we want it to be.

She has had a pretty rough week this week. Her seizures started escalating last Tues. I didn't worry about it too much because we were going to have a level check done on Wed. Sure enough her level had dropped. So we increased the meds. By Sunday night, her seizures had increase even more...having 1 every 5-10 min. After an hour & a half of this, I called the 24-hour line to my ped's office. Talked with another one of the doctors, & we decided to increase the meds again. I also had to turn up her oxygen from a 1/4 liter to a 1/2 a liter.

The next 4 days, she slept most of the time, was maybe up 2 hours total the last 2 days. Last night she finally had some awake time (of course now her days & nights are mixed up). Because of her sleeping so much she really hasn't handled her secretions well at all...so last night I got out the stethoscope & listened to her lungs (yup learned how to do that too!)

She does have some fluid in her lungs. Poor thing. So I have been doing CPT (chest <something> therapy) with her to help open up her lungs. She coughed out a lot of thick yucky stuff last night...so I'm hoping that what I'm doing is working. Going to wait it out through the weekend & see how she does. She is already doing better today than yesterday.

We have started seeing the Infant Developmental people as of this week. We will be meeting every Monday to work on her developmental skills including feeding (my #1 priority).

As I said, this week was hard, but we managed to get by without taking her back to the hospital. I thought I was really going to break down (did a little)...the fear of taking her back was just too much for me.

In other news...

The house that we are building is almost done! The foreman said within a week & a half. HOW EXCITING! Our first home!

Also...I did a PartyLite fundraiser (with the help of a friend) while we were in Seattle. Sent out packets to 80+ hostesses of mine requesting their help in keeping my business going & also giving them the opportunity to see the new line. Total profit on that was $1200!! Which I thought was great considering only 4 people participated.

Anyways, I will try to post messages more frequently. But always keep in mind...if you don't hear from me...then things must be doing good, because I don't have time to post a message!!

If you would like to see "lots" of pictures of Brianna & others, I have them posted now! Some of them aren't so pleasant, as Brianna surely wasn't her best...but they are still memories.

community.webshots.com/user/n2candles

4/30/02 – 6 Days Shy of 4 Months

The past 2 weeks have been pretty rough.  She has been sleeping 23 ½ hours a day & having bursts of seizures throughout the day, 1 every 5-10 min.  I called her pediatrician on Thursday & said we have got to do something.  What good is it doing having her all drugged up & I’m still seeing seizures?  So, he called down to Seattle on Friday & they recommended another drug.  When he called me back on Friday, she had been awake for most of the afternoon!

I went & got the prescription filled anyways.  The past 4 days she has done a complete turn around!!  Awake all day & I’m only seeing 2-3 seizures A DAY!  So I called her pediatrician on Monday & told him the great news.  Also mentioned that I DIDN’T start the other medication since she started to come around.  He was happy with my decision.  I also suggested that we should go get a blood level check to see where we stand with her medications so we know where we need to target her in the future.  He said “great idea”.

So I went Monday night & got that done.  We are still pending her Topomax level (takes about a week).  Her Phenobarbital level was 96.7 (targeting 90-100).

I am just so happy she has turned around again!  It’s all about juggling medications.  She has been so alert, focusing, & talking up a storm!

Other good news!!  She started to hold her head up on her own & move it around!!  YOU GO GIRL!!

 Anyways, I’m rambling, but just very excited that things are looking up again.

 We should also be moving into your new house this weekend!!  HOW EXCITING!!

 Take Care Everyone!!

5/16/02 – 4 Months 10 Days

...is back in the hospital.  We took her back yesterday morning.  She was having more bradicardia episodes (stopped breathing).  She had them at the hospital and they have re-intubated her.  Ironically we were heading there to see the Pediatric Neurologist from Seattle anyways, so he got to see her at her worst.

Once she stabilizes again, they are going to try hormonal steroid shots to try & control her seizures better.  If that doesn't work, then we are going to try the Ketogenic diet.  The shots will take about 2 weeks to get an idea on whether they will work or not.  The diet will take a month or 2.  So we are looking at a while before we will know for sure.

She will at least be in the hospital for a week while they start the shots.  Kevin & I are pretty devastated.  I go back to work on Monday & we just moved into our new home this past weekend.  All was looking pretty good, & now we have another set back.

Well...off to the hospital.  Please keep us in your prayers.

5/27/02 – 4 Months 21 Days

The past week & a half has been pretty rough. She was taken to the operating room to have the breathing tube taken out on Thursday. The doctors were pretty for sure we were going to have to do a tracheotomy. They thought there was a pretty severe obstruction in her airway since she was so hard to intubate in the first place.

They put a scope down her throat to check things out...and GUESS WHAT?!? All was PERFECT! Not a thing wrong. She came out of the OR with no breathing tube & no trach! We were so excited I could hardly contain myself.

Oh and about her seizures. The shots are WORKING! Her Phenobarbital level was 77 a couple of days ago. Now, as you may recall we were trying to keep that between 90-100. We are now weaning her off of her medications too! Can you believe it?!?! The ACTH shots were just what she needed. No nasty side affects of medications anymore (like too much sleep time!)

She is having wonderful alert time & sleep times.  Talking up a storm!  In fact, Saturday night she decided it was her turn to keep us (me) up.  She talked all night long & then slept most of the day on Sunday.  Crazy girl!  She has got it turned back around the right way now though.

She is doing so well that we came home Saturday afternoon & she is almost completely weaned off of the oxygen!  She went 9 hours today without ANY whatsoever.  I plugged her back in this evening because she started to show some low numbers & I wanted to give her a break throughout the night.  But 9 HOURS!!!  Prior to this, she wouldn't even last an hour before needing the oxygen again, so this is major improvement.  This included taking her for a ride & having to be in her car seat.  Which normally she doesn't do very well in her seat.  

Lets keep our fingers crossed that the shots continue to work.  Normally these shots are only a 2-4 week treatment.  When you stop them, the seizures are supposed to be under control for a while, sometimes forever.  If the seizures continue, you repeat the treatment.  We are not sure what is going to happen in her case, seems how hers are so hard to control.  Only time will tell.

Thanks for all of your continued prayers.  I'll send another email again soon.

6/12/02 – 5 Months 6 Days

We took Brianna back to the hospital today.  She has been asleep since Saturday morning.  Her Phenobarbital Level was 120 on Monday & she is beginning to have respiratory failure.  They had to put her back on the nasal CPAP to help her breathe.  We are hoping we will only be there a day or two, just long enough to help her get over this hump & wake back up.

6/14/02 – 5 Months 8 Days

Brianna still hasn’t woke up.  Her Phenobarbital Level is now in the 70s.  We would have thought she would have been awake by now.  We did a CT Scan today & found out some very disturbing news.  Brianna has a massive hemorrhage in her brain.  She is classified to be in a coma & will never wake up.  The Neuro-Surgeon came to talk with us & said there was nothing surgically that could be done to help her.  It was only a matter of time before Brianna wouldn’t be with us anymore.  It could be anywhere from a couple of days to 2 weeks.  We are hoping for the shorter timeframe.

6/16/02 – 5 Months 10 Days

Kevin & I have been camping out non-stop at the hospital.  They have moved us to a private room where we are the only caregivers for her.  I gave her a bath today & she smells really good now.  Family & Friends have been coming by to visit & keep us company.  It has been a rough couple of days.

Later on…

Brianna gathered all of our family together tonight to say her farewells.  I had either received a phone call 10 minutes before or 10 minutes after from family members that could not be there.  All other family members were present when she passed.  We were getting her ready to go outside for some fresh air.  I had just put on some socks to keep her feet warm.  I lifted her up from Kevin’s mother, gave her a kiss on the cheek & took a look at her.  I began to hand her to Kevin, when I stopped to look at her again & noticed her eyes were open.  I said ‘Kevin her eyes are open’, then I heard her take her last breathe.  I looked at Kevin & then her again, & began to cry even harder.  There were 2 requests that I asked of her, that she open her eyes one last time so that I can see them, and that Kevin or I be holding her.  She did one better, we were both holding her.

Kevin & I stayed with her for 3 hours after she passed.  She looked so peaceful.  I know that she is not hurting anymore.  Like my mom said ‘She never cried, but she is singing with the Angels now.’  How true that is.  She will forever be my guardian Angel.

June 22, 2002

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