It Means Nothing

Sometime a song just hits home. I came across this song

when a friend posted it on Facebook shortly after Olivia died.

Somehow it just seems o capture a lot of what I can't seem to

express in my own words.

Did we lose ourselves again?
Do we take in what's been said?
Do we take the time to be
All the things we said we'd be
And we bury heads in sand
But my future's in my hands
It means nothing
It means nothing

You can find yourself a God
Believe in which one you want
'Cos they love you all the same
They just go by different names
When we fly our flag today
Are you proud or just ashamed?
It means nothing
It means nothing

It means nothing
It means nothing
It means nothing
If I haven't got you
If I haven't got you
If I haven't got you
If I haven't got you

And the sun sets in the sky
You're the apple of my eye
If the bomb goes off again
In my brain or on the train
I hope that I'm with you
'Cos I wouldn't know what to do
It means nothing
It means nothing

It means nothing
It means nothing
It means nothing
If I haven't got you
If I haven't got you
If I haven't got you

If I haven't got you

Dragonflies

I am still at a loss for words to describe our current journey. Three weeks have gone by, yet every moment has seemed to drag by excruciatingly slowly. When Olivia was born in February our lives changed forever. Our regular routines and freedoms were thrown into chaos. Slowly over the next weeks Sara and I established nice routines all centered around Olivia - Feedings, Playtimes, Baths, Dr Visits, Medicines, Etc. We were satellites orbiting the center of our universe -- Olivia- a very bright star. When she left our world 3 weeks ago, our Sun, our Center, Our Focus was taken away. Sara and I lost our center, we lost our focus, we lost our Star. Hopefully someday we will find pleasure again in the freedoms that have returned -- finishing a meal uniterupted, sleeping in on the weekends, getting in the car w/o needing to 'load up.' These are freedoms we glady gave up and don't want back, but we have no say....

Needless to say, we have searched everywhere to understand why. We look for the tiniest little sign that things will be ok. The other day we were fortunate enough to experience one such event. Sunday morning 2 weeks after Olivia passed away I noticed a large number of bugs flying around our back pasture. When Sara and I went out to investigate, we were overwhelmed by Dragonflies. There were probably 200 or more flying around in our couple acre pasture. We stood out there and marveled at a spectacle we had never seen before. In the 10+ years I have lived in this same house, never had I seen this many Dragonflies in one area.

As we stood and soaked in this display of gleaming wings and darting bodies, one large Dragonfly came up to us. It had an iridescent green body with a purple/blue sheen to it's tail. The wings were a transluscent silver, gleaming in the warm sun. It hovered in front of Sara's face for a few seconds, then it moved over to me and landed on my left shoulder. Soon it took off and dissapeared into the rest of the Dragonflies.

While looking around on the internet about dragonflies, we came across some interesting facts. Native Americans believe that Dragonflies represent renewal and can be messengers from the spirit world. The story below was also found in our search, somehow it feels very appropriate.

The Dragonfly

Once, in a little pond, in the muddy water under the lily pads,
there lived a little water beetle in a community of water
beetles. They lived a simple and comfortable life in the pond
with few disturbances and interruptions.

Once in a while, sadness would come to the community when one of
their fellow beetles would climb the stem of a lily pad and
would never be seen again. They knew when this happened; their
friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge
to climb up that stem. However, he was determined that he would
not leave forever. He would come back and tell his friends what
he had found at the top.

When he reached the top and climbed out of the water onto the
surface of the lily pad, he was so tired, and the sun felt so
warm, that he decided he must take a nap. As he slept, his body
changed and when he woke up, he had turned into a beautiful
blue-tailed dragonfly with broad wings and a slender body
designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole
new world and a far superior way of life to what he had never
known existed.

Then he remembered his beetle friends and how they were thinking
by now he was dead. He wanted to go back to tell them, and
explain to them that he was now more alive than he had ever been
before. His life had been fulfilled rather than ended.

But, his new body would not go down into the water. He could
not get back to tell his friends the good news. Then he
understood that their time would come, when they, too, would
know what he now knew. So, he raised his wings and flew off
into his joyous new life!

~Author Unknown~

In the weeks to come I'll post a small memorial video of Olivia, keep checking occasionally, I'll keep the site active. Thanks again to everyone for their expressions of sympathy and support and of course to those who have donated in Olivia's name to The Alagille Syndrome Alliance. Take a moment to go there and donate $5 if you haven't. Thanks.

Thanks for listening.

Ben, Sara & Little Angel Olivia.

Meet the Liver Team

Tuesday's check-up in Ann Arbor went as smooth as can be expected. Sara and I have decided anytime Olivia doesn't end up hospitalized makes for a good visit. :) We met with pretty much the full complement of practitioners involved with Olivia's Liver care. This team consists of a Registered Nurse (Vicki), a Social Worker, a Clinical Psychologist, a Nutritionist, and of course Dr. Lopez. From what we gathered, Vicki seems to be the lynch pin to this team, coordinating and organizing everything.

Meeting with the Clinical Psychologist was interesting. He was interested in how we've been dealing emotionally with all of Olivia's problems. We had a good conversation about our hopes and fears concerning our Little Diva. Of course Sara and I have talked about these issues quite a bit, but it was good to

have a 'neutral'

party become part of the conversation and validate our feelings about our dearest Olivia. It sounds like we will meet with him every time we come for a Liver follow-up.

Dr Lopez popped in for a couple minutes, took a quick look at Olivia and was gone again. He did seem happy with her overall progress, since she'd put on just over 1lb since her last visit 1 month ago and her blood values have been stable.

Kila, the clinical nutritionist, came in after Dr. Lopez and spent a good 15 to 20 minutes talking to us about Olivia and her weight progress. It was decided that Olivia was still at the bottom end of her growth curve - -not surprising due to the combination of Heart and Liver problems -- but that they would like to see her move up

some percentiles by her next visit. We will be starting Olivia on a higher energy formula -- 30KCal vs the 26KCal she's eating now. This will hopefully allow Olivia to put on weight faster taking in the same volume of food she has been eating.

Before we left the hospital, Olivia had to leave a blood sample for a full work-up. This blood work showed that her liver is doing 'well,' with all her liver values improving slightly across the board. The only concern at this point is that her Potassium (K) continues to be elevated. The increased BiCarbonate hasn't reduced the Potassium as much as we'd hoped. The new plan of attack now involves changing her formula to a lower mineral content formula, hopefully she will take to this food quickly w/o much difficulty.

As I mentioned earlier, overall the visit went well, at times though we felt as though not everyone was on the same page. The extent and rarity of Olivia's medical condition(s) are most likely the cause of some of the confusion/contradictions we ran into talking to the Liver team. For example the nutritionist was initially under the impression that Olivia's heart had been fully repaired, when we explained this was not the case, she had to change her assessment... Hopefully

as they all become more familiar with Olivia during her subsequent visits, everyone will be up to speed and we'll have less confusion about what's

been done or still needs to be done.

One final picture of Olivia with her new best friend: Charly -- picked up at the Chelsea Michigan Teddy Bear Factory on the way home from the Hospital.

She's a Champ

We just got back to see Olivia. She made it through without any problems. Her BP have actually come up nicely so they will probably wean her off her Epi & Dopamine over the next 12 hours. Her Blood Gas Labs look good.

When Sara and I came back and said 'Hi Olivia' she slightly raised her eyebrows and we could see a slit of eye under those tiny little lids. It's amazing how she responds to our voice even while still sedated. I just can't imagine not having someone she knows by her side while she is in the Hospital. There seem to be too many kids here that don't have family around them all the time. It can't be healthy for them to be 'abandoned' like that. I understand that life must go on (work, other kids, etc) but they know if you are there or not, even at this age.

We were also quickly reminded how fragile these little ones are. The bed next to Olivia is now empty...... if our worst thoughts are confirmed our thoughts go out to her family.... so sad.

Doing well but still waiting

I just talked to Olivia's nurse, things are going great. Her pressures dipped slightly (expected) when her chest was closed, but they have since come back into the 50's w/o adding any medications. They have also turned her ventilator down quite a bit, hoping to wean her in the next 24 hours.

They haven't opened the ward back up yet, making us worry for the baby next to Olivia, her procedure should have finished 1 hour ago.....

The nurse was nice enough to let us know the delay didn't have anything to do with Olivia :)

We'll update when we're back with the baby.

Closing Her Chest

Moring rounds went well. The whole team was happy with her progress, so they decided they will try to close her chest this morning. 

This procedure is done right on the ward, it's set up to be a sterile surgery room if necessary. The closing shouldn't take more than 1 hour.  We'll probably have to wait 2+ hrs to see her again, because they were going to close another chest right after Olivia's closure.

Olivia's Kidney values are also pretty good, her Creat has crept up to 1.0 from 0.9 yesterday (normal = 0.5). The Renal team suspects she will creep up a little more before she comes down, because of her arrest episodoe the other night. Overall they seemed comfortable with her kidney function and think things should recover to baseline as long as no new insults occur.

Ahhh Sleep

Sara and I finally got a good 6 straight hours of sleep (in a bed) last night. That's the first time in over 10 days. Feels like I could sleep another 12 easily.

Olivia did very well overnight. No changes. Her pressures remain unchanged from last night. She's down to the lowest doses of BP meds they use before stopping. They probably won't change anything more until they close her chest. 

She's been urinaring very well overnight. So well in fact, that she's back to her 'dry weight' - weight before surgery & fluids. This means she could probably have her chest closed earlier than they first thought. Whether they decide to do so today, we'll see what the surgeons think during rounds this morning. Either way they are going to have to back off her diuretics (water pills) or they will make her too dry and have blood pressure issues that way.  ...what a fine line ...

Here's to a Quiet Night

Well so far so good. Continuing to wean drugs down. She's now been off the Vasopressin for 30 minutes and has recovered nicely. Every change in meds has been met with her little body picking up the slack. 

No other changes planned for the night. 

Just letting her body sleep and heal.

Good night my sweet, see you tomorrow.

"Status quo, you know, that is Latin for the mess we're in." - Ronald Reagan

It's been a good day. mostly uneventful.  Slow weaning and tweaking of medications has left her with pressuresa of 89/38 with MAP 56.  Down some from earlier, but she's been reduced on two blood pressure meds and increased on a Vasodilator to improve her peripheral circulation. 

Rythms are good, Urine output is increasing, Chest drainage is normal. Heart no need for pacing machine. Hopefully this contibues through the night. As long as things continue to look stable we'll try to get a longer night's sleep than yesterday.

The plan is to try and close her chest Monday, as long as she continues to urinate well and get rid of her excess fluid.

Earlier Olivia woke up a little while Sara was with her, opened her eyes and was looking around. Our little Peanut Diva is still there, underneath/behind all the tubes and wires.

Keep up the good work Olivia, slow and steady wins the prize.

It's All About Blood Pressure

Well Olivia didn't have any more complete crashes after her episode last night. Watching the nurse fill out a Cardiac Arrest Record for her was just bizzare. The good thing was that she never fully arrested, it was just that her BP and HR kept dropping to the point chest compressions were necessary to keep things circulating well. 

Through the night she had a couple more dips in BP resulting in two more IV medication drips and a Rythm Pacing Machine.  Since they started the Vasopressin at 4AM she's been extremely stable around 95/40 with a MAP of 60. The goal for Olivia is to keep her MAP (Mean Arterial Pressure above 45). 

The last 6 hours have been very good. They have turned down the Heart Pacemaker so she is actually keeping her own rythm. They have also started to wean her off the Vasopressin drip. So far she's keeping things up on her own. 

While she's still on the ventilator, she's now taking a breath on her own every minute or two. 

The next big task of the day for the little Peanut is to get her kidney function back to where it was before surgery. Her Creatinine was 0.5 before surgery, now it has jumped to 0.9.  They've given her a couple of diuretics to try and get some better kidney output. Most likely the Creat will continue to go up for another 24 hours before it levels out, and then hopefully goes down.

Olivia earned a new nickname from the staff last night : DIVA.  She didn't want to share any of the attention with any of the other patients, it was all about her last night. Oh Boy....

Hopefully it will be an uneventful day, slowly weaning IV drips (12 different ones at last count) and getting her to pee. The Dr's are thinking of closing her chest Sunday or Monday depending on how much fluid they get out of her system.

More later as things progress.

In lieu of a picture of her all wired up, here's a pic from 1 week ago. Man... I just want to be able to cuddle her again.

Sleepless Nights

I have a feeling it's going to be along couple of days.  Overall she's been doing pretty well, she seems quite sensitive to any changes right now. Small changes in meds or fluids send her blood pressures moving from one extreme to the other.

She just had a pretty bad pressure crash after stopping one drip. They ended up asking us to leave while they worked on her. Not a fun 30 minutes. They had to bolus significant fluids and start an epinephrine drip. They also hooked her up to a pacing machine to make sure her Heart Rate doesn't drop below 100. The doctor did say they had to do some chest compressions to keep her pressures up while the meds kicked in. She stablized fairly well after that.

We're back in with her now and gave her a stern talking to about pulling anymore crap like that. She's stable again, but not giving us any rest.

Keep the positive thoughts coming our way.  While the surgery was a HUGE step, the next 24-48 hours are even more critical for her boby to start to adjust to the new blood flow and all the trauma the surgery induced.

How Surreal Life Can Be

We've been by Olivia's side for the last couple hours and she's a real trooper.  Her pressures are stable (as much as they can be at this point), her Oxygen Saturations are good, ECG is stable. She's actually on quite a low dose of heart meds to help keep her blood pressure up, all the Dr's and Nurses seem happy with her condition given what she just went through. Whenever an alarm sounds on her monitors, there someone there right away to analyze and react if necessary, very impressive.

Here's this 5lb infant surrounded by 100+lbs of equipment. IV pumps, Breathing Machine, Chest Tubes, & Drains.  Her chest covered with a clear yellow plastic drape, her little heart beating just below the surface.... 

Never in a million years would Sara and I imagined ourselves in this position, it was just last Thursday afternoon when we were heading in to a 'routine' cardiac ultrasound to evaluate a mild childhood murmur.  Huh.... that seems ages ago. Everything has stopped for us while the world around us continues undaunted. We hadn't even stepped outside for close to a week until we went home for a couple of hours yesterday evening.

We'd again like to thank everyone for beimg so supportive and helping out with everything. We'd also like to thank any of our clients following this Blog for their understanding, hopefully whithin the next week the clinic schedule should return to some semblance of normal.

Thank You.  

She's Done

Olivia did well. 

Recovering in ICU.

Will hopefully get to see her within the hour.

So it sounds like the last hour of surgery was just watching for bleeding, placing new stitches and watching. They weren't able to close her chest due to the swelling, but it sounds like that is not unusual. They plan on closing the chest in a couple of days.

Just waiting

Still in Surgery, watching to make sure there is no bleeding at site of the shunt.

One spot was oozing, but they seem to think they have it controlled. 

Still doing well.

Off Bypass

Surgery still going well.

Off Bypass.

Will be closing shortly.

Hope to see her in a couple of hours.

1/2 Way There

1/2 way done. 

Shunt is in R side. Now attaching to Pulmonary Vessels. 

Another 1/2 hour or so of stitching, then she comes off bypass.

hopefully done by 12 12:15

Then the real work of recovery begins

Everything going well

Just got the first update. 

Anesthesia induction went well, just placed on bypass, everything going well.

And the waiting begins

7:30am  we handed over our precious little bundle to the care of the best team we could hope for. Please keep Olivia, The Surgery Team, & Us in your thought this morning.

Our little fighter, puttin' up her dukes:

1st Surgery of the Day

Olivia is scheduled to have surgery first thing in the morning.  Anesthesia will come get her around 7:30am EST.  If all goes well she should be back in ICU by early afternoon. 

I'll post whenever I get the chance, might not be until after the surgery.

Thank you so much for all your comments, I haven't had much time to answer many of the messages, but be assured we do read them and they have brought comfort to our hearts and tears to our eyes.

We love you all.  Pray for little Olivia tonight!

What's one more conern?

So we had a visit from the Pediatric Kidney team yesterday. They were called in because it was noticed on ultrasound that one of Olivia's Kidneys is Cystic and Hypoplastic (small).  They are not sure what the implications of this are finding because overall her kidney function seems good/normal. The Doctors did state that functioning on one kidney is more common than forst thought, often it is an incdental fnding while working up other problems. 

They of course want to monitor this, especially since one of the complications of being on a bypass machine is to have an acute kidney reaction shortly after surgery. The best newsconcerning the acute kidney problem is most often a short term treatable/recoverable issue. The Cardiologists & Kidney specialists will monitor her closely in the Cardiac ICU after surgery for any kidney complications.

More later after we meet with the Cardiac Surgeon.