It's the birthday girl! Tonight, the entire planet will celebrate this blessed natal event. Happy 27th Birthday, Jana!!!

2008 Memories

Froehliche Weihnachten!

Christmas Eve Activities and Program

Christmas Morning!

"What do you mean, I was in surgery 7 days ago?"

Merry Christmas Eve!

Please enjoy this little jig that Jana and the kids have been working on. It takes a minute to load, but is worth the wait. (You'll want to pause the music player at the bottom of the sidebar on the right.)

Send your own ElfYourself eCards

Hurry Up and Stay Put. No Really, Go Home!

11:00 a.m.
Almost! Jana called earlier this morning to inform me that Bridger will be discharged this afternoon- that I need to hurry and get the kids ready to drive into town to pick up her and Bridger. Then she called back. Bridger's been battling diarrhea and the staff is concerned that he may be getting dehydrated. So, they want him to stay overnight. Bummer.

I'm sure it's good for Bridger, but it's always hard to have your hopes raised and then dashed a moment later. It's all good. Tomorrow is Christmas Eve, afterall.

1:45 p.m.
"Okay, really, he can go home." Seriously? I'm not going to get in the car only to have them change their minds again? Jana just called to inform me that he's fine, that the diarrhea has already cleared up, that he can go home! Here's the crazy part. I was the one who informed Jana, and she in turn the staff, that the likely reason he had diarrhea was because they gave him glycerin before leaving the PICU yesterday. A dose of glycerin is standard protocol with most kids who have had lots of pain medication while intubated, since those meds tend to cause constipation. Yet, in my mind I was wondering why they even gave him glycerin, since he had already shown his bowels were in tip-top shape prior to the glycerin. So it seems clear that several people on the cardiac floor didn't read his chart to see that he had been given glycerin before going up. And, as you saw in the earlier update, they were planning to keep him another day because of it. Does this make any sense?

To summarize: They gave Bridger glycerin for constipation he didn't have. They (cardiac unit) were going to keep him for diarrhea that they (PICU) caused. Now, they're letting him go because we reminded them of the former. Honestly, don't you think they would have figured out this chart thing by now? ;-)

I've got to jet to the hospital, before they change their minds!

4:00 p.m.
Bridger's home!

Day Five: Movin' On, Movin' Up!

I wanted to start today out with a beautiful poem my mother wrote for us. She e-mailed it to me the day before Bridger's surgery. It's been so hard for her not to be here during this difficult time, and as she was thinking about this and praying in the temple these words came to her:

THE HEART OF AN ANGEL

Your heart is beating softly

As you slumber on my breast,

My angel child, who came to earth

Not needing any test

****************

Your heart, as small as a robin's egg

Came needing some repair,

So Bridger, all who love you

Now join in fasting and prayer.

*****************

How I pray for those skilled hands

That I must trust you to,

That this little heart may be made whole

Before this day is through.

*****************

I'm grateful for another healer

Who all broken hearts can heal,

Through the gift of His Atonement -

I know that power is real

******************

I long for the day I can teach you

In ways that you'll understand

About Heavenly Father who loves you

And the Savior, who holds your hand.

*******************

In my mind I see your valiant spirit,

And in my mother's heart I know,

That all our hearts will grow in love

As we bask in your celestial glow.

*******************

For you are love in its purest form

Fresh from its purest source

And, as your parents, we thrill to know

That you will stay the course.

******************

You'll never break a commandment,

You'll never break our hearts,

And every day we'll learn from you,

How to do our part.

*********************

How honored we feel, that the Father

Would entrust you to our care.

There's so much that you will teach us,

In the days we'll have to share.

*********************

So slumber on my little one

Sweet peace has calmed my fear,

Your tiny heart will beat strong and true

Next time I hold you near.

***********************

.

She captured so beautifully the feelings I felt and made me tear up as I read it. First, because it was so touching and second, because I was so proud of my technologically-challenged mom for actually figuring out how to send an e-mail! We are excited to see her and my dad on Friday.

.

10:45 a.m.

Todd's Update: Okay, things are going REALLY well. We're just waiting for word from the Cardiac Unit that they have a bed and nurse for Bridger. He is guzzling the breast milk that we have been freezing for him. His GI system is back in operation, filling diapers left and right. His leg IVs are gone. His right arm IV is gone. His central jugular artery line is gone (procedure caught in picture). His chest tube is gone. His bandage is gone. Pretty soon the PICU staff will be saying, "Bridger is gone!" Yay! Then we can begin to bug the next nurses and doctors about how soon he can go home.

.

Oh yeah. I just met David Cook, 2008 American Idol winner.

.

He and Chiefs tight end, Tony Gonzales, were holding a spontaneous press event this morning for the kids in the hospital. So of course, Bridger asked me to attend in his stead. Everything was all laughs and high-fives. But when I confessed to David that we had been rooting for both Davids (Archuleta and Cook) during the competition last Spring, I could sense the tension between us. Fortunately, when he learned that our family is from both Utah and Blue Springs, he cut me some slack. The tension disappeared. This obstacle in our friendship seemed to have brought us closer together. We're on good terms again. He's cool with it. Everything's good. We're in a good place. Back to BFFs.

.

Each of them signed the legs of a Tony Gonzales doll for Bridger. He seems to like it. Jana is going to be quite upset when she discovers she missed this event. I haven't called her yet. I don't think I will. :-)

1:15 p.m.

He's outa the PICU! Bridger's new address in the cardiac unit is Floor 4, Room 14, Children's Mercy Hospital, Kansas City, MO. His next address will be Home. Isn't that a beautiful word? Home!

The doctor said Bridger's discharge could be as early as TOMORROW, but likely in a couple days. Let's see, 'a couple' usually means two. Two plus 22 is... the 24th! Things are lookin' good. Here's Bridger in his new digs. Still looks and smells like a hospital. Fortunately, though, there is a private bathroom and sleeping accommodations right in his room, so Mom or Dad can stay close. Besides the fabulous health care, however, I would say the next best benefit of CMH is the free high-speed wireless Internet access. Wouldn't you?!

Free at Last, Free at Last!

9:25 a.m.
The nurse and the respiratory therapist extubated Bridger (removed the vent) on advice of Dr. Sommerauer. He had been breathing well on his own all night, showed signs of clear lungs and throat and was very alert. We cross our fingers. Almost immediately, he shows significant signs of improved breathing over our experience on Friday. And without even an oxygen mask, Bridger is breathing fine on his own! We keep our fingers crossed...

10:00 a.m.
The fact that almost no medical personnel have been in the room for the last half hour, hovering over Bridger, is a VERY good sign. On Friday, they couldn't leave his side, right up to the time he was re-intubated. Today he looks and acts almost like our sweet little guy, prior to surgery! Dr. Sommerauer, the daytime intensivist who's worked with him most, has done a wonderful job. We can't say enough good things about our staff.

We just realized that Bridger's parting with the vent occurred at the same time as the sacrament is passed in our ward's sacrament meeting. I'm sure the prayers and faith of our ward members, as well as friends, neighbors and family, have collectively been answered. Thanks to all of you!

They will continue to monitor him and check his blood gases to ensure that everything is headed in the right direction. If he continues this pattern, they will allow us to feed him breast milk sometime this afternoon. We hope they will release him to the regular floor sometime in the morning on Monday.

10:20 a.m.
It just keeps gettin' better. For the first time since we surrended our child to the surgery staff on Thursday morning, Jana got to hold our little Bridge! Truly a momentous occassion.

We are certainly grateful to have had the convenience of the Ronald McDonald house bedroom over the last three nights. I will probably spend one more night there tonight, then we can stay with Bridger in his actual room, once he's moved. This is a picture of the small, simple yet comfortable and functional bedroom that both of us stayed in last night. Thanks again, Mom, for being here for us through this and watching the kids! We hate to see you go home tonight, but we know you've probably seen us through the worst of it.
.
11:25 a.m.
It keeps getting better! He's cooing and booing as if nothing ever happened. He's a little hoarse. (Actually quite the stallion, if I may say so.) The nurse just confirmed that, if things go well, he'll go to the floor tomorrow. Who knows? We're hoping he'll come home Wednesday and be our Christmas Eve present.

7:40 p.m.
Jana's Thoughts: Bridger has had a great day! He's acting and looking more like himself again. He even got really mad and started wailing because he was hungry. When the nurse finally got the milk thawed and the bottle to him, he downed 3 ounces in no time. He was able to keep that first feeding down and then breastfeed later - both important steps toward leaving the PICU. His Omi and siblings came to visit on their way to the airport and were so happy to see and hold him. He got a little overstimulated by all the commotion of the kids and needed a little Tylenol to calm him down. Welcome to my world, Bridger! :) They were able to take out the catheter and most of his drips will be discontinued tonight. Hopefully tomorrow he will be on his way to the post-cardiac floor. Dad's hanging with him tonight while mom spends a little time with the older kids at home.

Day Three: Status Quo

Not much to say today. In an effort to be ultra conservative, the doctors have decided to let Bridger take the day off from any attempts at removing his vent tube. They have been administering a steroid (so much for his Tour de France ambitions next summer) to help bring down the swelling in his trachea. They have also performed a couple respiratory treatments to try and break up the gunk in his lung sacs so when they do remove the tube, he will have a better chance of breathing more deeply on his own. So, they're planning to try extubating again tomorrow, Sunday.

My mom and the kids were able to come by today and see the little guy. Jayci has a slightly runny nose, so we took the precaution of having her wear a mask. She was not a fan.

This is Michelle, the nurse that Bridger had last night. One of our favorites. She made Bridger's bed all cute and Christmasy for today.

Jana's Comments:

Bridger is trying so hard to deal with all the uncomfortable tubes and wires and not being able to move. But I can tell he's getting tired of it and it's so hard to watch him cry and not be able to help him. His little eyes get this pained look like, "Mommy help me! I don't understand why you're letting them do this to me!" And the saddest thing is to see him crying but not able to make any sound. His face gets red and his eyes tear up and he flails his arms and legs and looks so sad. It breaks my heart and I can't wait till we can get rid of all this junk and hold him again. We try to touch his head and hands and talk and sing to him but we're so restricted on what we can actually do.

Todd hooked up his ipod and speakers to create a little mood music above his head to listen to so hopefully that helps take his mind off things. When we get close to him sometimes it makes things worse because he gets excited and starts moving around and wants to be held. We're just trying to understand that this is a process and we just have to be patient and hope and pray for the best.

On the bright side, there are so many nice people here doing their best to take care of Bridger and make him comfortable. All the nurses and doctors are doing their best to take care of his needs and take time to answer all our questions and keep us informed. Santa came through the PICU the day of his surgery and brought him a Christmas card and teddy bear. And today a family brought gift bags around to all the patients. Their little girl delivered them wearing a santa hat. Our nurse told us they had a daughter with DS and AVC who was here at CMH for two months after her heart surgery. Unfortunately she didn't make it and only lived to be 7 1/2 months old. Her family started a foundation to raise money for families going through surgery and long hospital stays in situations similar to theirs. And every Christmas they come to bring gifts to all the patients to brighten their day. I was very touched by the way they turned a tragedy in their lives into something positive to help others and honor their daughter and the people who fought with her to survive. You can see their story at http://www.giftsofgabisgrace.org/.

We have met so many families with children with disabilities who are so inspiring to be around. They are all so positive and supportive. I was able to talk to several mothers who had been through heart surgery with their child and it helped prepare me for this experience. It was such a big help and I really appreciate their concern and support. We are so blessed to be surrounded by so many wonderful people!

The Awakening... Almost :-(

We cannot say enough "thank you's" to all who have reached out by email, voicemail or comments on this blog to share your support. What an amazing thing to be so connected with you all via this medium. It certainly makes the world feel a little bit smaller.



11:00 a.m.
Bridger began stirring during the night, so they had to tie his wrists to the rails of the bed to keep him from pulling on the various lines he is surrounded by. They are slowly weening him from the many drugs feeding into his body. He even tries to open his eyes from time to time and is taking breaths on his own. The nurse removed the leads that were connected to his heart through his chest, in case his heart needed any kind of a jump start. He didn't need them at all. They treated his lungs to break up any gunk so that he can begin breathing without the ventilator. It's a tricky, icky transition. He's right on track and showing all the signs of a full recovery.

On another note, we still have three other kids. No, they're not entirely forgotten. Their Omi (Todd's mom) is at the house with Dawson and Jayci today. Conner's in his last day of school til January. Jana stayed in a Ronald McDonald House room down the hall from the ICU and I drove home last night to check on the kids and do some business this morning. It's nice to have Mom here to free up Jana and me as we attend to little Bridger as much as possible. The kids are very excited to come to the hospital tomorrow and see their little brother. By then we hope many of the lines have been removed and that he is getting close to leaving the ICU.

3:00 p.m.
The nurse determined that Bridger has a slightly high temperature that may be due to an infection. This is a common post-op condition during the first 24 hours. They are optomistic that it will subside, especially since he's already on a drip of antibiotics. To be safe, they are conducting several tests on his blood and other fluids since we're a little outside the 24-hour window. More later...

4:oo p.m. Bridger is starting to breathe on his own! He still has the tube in until he's completely able to breathe without it, but for the most part he's doing all the work. Way to go little champ! We're still waiting for him to wake up a little more but he's taking his time. Maybe he's faraway in his happy place and doesn't want to be bugged. The nurse's tell us waking up is the worst part because he will be hooked to all these lines and want to move around and not be able to, but it's another baby step in his recovery process.

6:30 p.m. You know that saying, "sometimes life doesn't go as planned?" This is one of those moments. After the nurses extubated Bridger (removed the ventilator), his airway became increasingly more constricted, probably due to inflammation and all the blood and mucous that was building in his throat and lungs. This picture is what he looked like when we thought he was done with the ventilator. However, even with several attempts to suction it and to get him to cough on his own, they asked Jana and me to step outside while they re-intubated him. While it is a set back, they may be able to try again tomorrow, but more than likely not until Sunday. We're still hopeful that he'll get discharged before Christmas, but another day or two longer is still possible. Bummer. On the bright side, even though they had to "paralyze" him with drugs while he was intubated again, the effects wore off pretty quickly. He's awake again and still breathing on his own, just with the aid of the direct oxygen to his lungs provided by the ventilator.

7:00 p.m. On a rather humorous (and disgusting) note, we have come to personally understand the stereo-typical meaning of the term "hospital food." While yesterday's experiment in the dining room was less than optimal, our gastronomic foray back to the basement this evening convinced us that we shall never again step foot into the Children's Mercy cafeteria, unless our goal is something simple such as a soda, french fries or frozen pizza.

In my efforts to eat healthy, I took a risk. I ordered the tilapia and a side of mixed vegetables (from which I was forced to remove the evil zucchini squash that beset my plate). The fish was tough and, well, fishy, and the vegetables were mush. So much for avoiding the squishy texture of squash. Jana, however, was astonished to discover on her plate that not only was she staring at a pile of overcooked cauliflower, it was somehow staring back!

Upon closer examination, I was able to confirm that a roughly one half inch sized inch worm (apparently not living up to his name) had been unwittingly steamed into her side dish and had escaped the diligent inspection of the hospital's expert kitchen staff. Of course, she stopped eating. We were both in a mild state of shock, not quite sure just how to respond. On one hand, this poor, helpless larva was simply minding his own business, enjoying his natural environs when he was homicidally harvested and sent to market. On the other hand, we couldn't be too sure that Jana hadn't already consumed his closest relatives.

Of course, my instinct was to document the entire event. After all, would you have really believed us if we had told you the food served in a world-class children's hospital wasn't exactly sanitary? (no offense to the worms of the world) Let the evidence speak for itself! Exhibit A: I give you, the inchworm. Exhibit B: I give you, the innocent victim, caught unawares by her foul fare. She did take the caterpillar carcass back to the kitchen to inform the staff. The cauliflower was immediately recalled. Jana then settled for free pizza and... a salad?!?!?! Throwing all caution to the wind, Jana picked the produce that was most likely to contain an actual living specimen of the fluke's family. Oh well. With enough ranch dressing, any form of protien is pretty palatable.

The dead give-away that we should have steered clear all along was the writing on the wall. Seriously, I literally mean the writing on the wall. All this time we had no idea we were eating at the "Happy Ho."

The Big Day

Yesterday I took Bridger to his pre-op at CMH. They checked all his stats and did a blood draw. To get a good vein they put a rubber band on his head and told me I probably wouldn't want to watch because they were putting needles in his head. I can't even watch them take my blood so I put my head down and cringed as I listened to him cry and fought every instinct in me that wanted to hold him close and comfort him and make it better. He didn't even cry on the first stick - he's such an easy going non-demanding guy - but the second time he had had enough. They had him wrapped up like a little taquito with his arms at his sides so he wouldn't move and he wasn't thrilled about that either.

Once he calmed down from the blood draw it was onto another room for a chest x-ray. Once again we had to strip him down and two nurses dangled him in front of the x-ray machine - another thing he wasn't too happy about. Finally, after 2 1/2 hours we could go home. But after I'd been gone 10 minutes they called me to tell me that one of his blood samples had clotted and they couldn't spin it so I needed to come back to the hospital to have it re-drawn. Huge bummer. The minute I layed little B on the butcher paper he started to wail knowing what came next. We were so happy to leave almost an hour later and head home. I was already sick of the hospital and we hadn't even gotten to the surgery day yet.

Todd arrived in KC from Chicago on time. Sadly his mom got stuck in Denver waiting for her plane which was stuck in the freak snow storm in Las Vegas. The ironic thing is we almost opted to connect her through Vegas because we were worried it would be bad weather in Denver. Instead Denver was clear and Vegas was the issue. You just never know with flying this time of year. But luckily Trudi and Todd arrived home at 1:30 a.m. and we were glad that all worked out.

We arrived at Children's Mercy Hospital at 7:15 this morning and checked Bridger in. Because of limited space they cut off the last letter in his middle name and had his name listed as Bridger Eva and people kept asking us if he was a girl! The nurse checked his blood pressure, weight, length, temperature, oxygen saturation and listened to his lungs. He was happy and wiggly through most of it and sucking on his hands because he couldn't eat past 3 a.m. and was probably starving. They brought in a sassy peach colored mini hospital gown and we got him ready for surgery. We met with 2 of the nurses assisting doctor Lofland and with the anesthesiologist. She thought Bridger seemed slightly dehydrated because they had a hard time getting his blood pressure and accurate pulse, so they will be extra careful with the anesthesia. We got to hold him and play with him a little longer and then gave him to the nurse and watched with teary eyes as they carried him down the hall to surgery. Now we're in the surgery waiting room hanging out until it's over.

****************************

9:00 a.m. The nurse just came out to tell us that Bridger was sleeping and intubated and they were hooking up the IV's and all the other necessary lines and machines. He's doing well so far.

****************************

9:30 a.m. Nurse checked in again and they are starting surgery and putting him on the heart/lung machine.

****************************

10:30 a.m. She told us the actual surgical repair of Bridger's heart is complete and they are in the process of getting him closed up and ready for ICU. So far, so good.

****************************

11:40 a.m. The nurse informed us that the surgery was complete and that he would be moving to the Pediatric Intensive Care Unit (PICU) in about 20 minutes. She said it would be about an hour before we could see him, so we went to the cafeteria. Fortunately, the only disappointment of the day has been the dry chicken and cold pizza.

****************************

1:00 p.m. We got to see our baby! It's amazing the technology that goes into this process. Bridger has no fewer than seven lines feeding into a jugular catheter. He also has a line entering in through both his ankles and wrists. One was to provide extra blood (a transfusion) during and immediately after the surgery. The most dramatic part of his appearance is the blood-soaked bandage on his chest and the tube that allows his chest to drain. It should gradually become more pink and then clear as he heals. He will remain intubated today and the doctors will begin waking him up tomorrow morning. Then they can remove the ventilator as he begins breathing on his own. The staff, so far, has been very attentive and informative. We're grateful to be past this, the greatest hurdle. Because everything went well and there wasn't any excessive swelling, they were able to close his chest right after the surgery - Yay!

Jana saw Bridger for a total of about 10 seconds, then sat down and put her head between her knees. The sight of blood makes her quite queezy. So, here you have a picture of both my babies, down and out.

.

Bridger is already looking pink! We didn't realize how un-pink he was until they fixed his heart. The medical staff commented that they could finally feel his pulse, where before it was very weak or absent. You can even seen his little heart beating under the surface of his chest, more so than before.

We appreciate all the comments you have left and the phone calls/text messages of support! If we don't pick up the phone, it might be that we're in Bridger's room, where cell phones have been banished. We're more likely to get your comments quicker at this point. That's all for today. We'll likely post again tomorrow.

Mending a Broken Heart

In 48 hours, our 4-month old Bridger will be in a coma. Intubated during a roughly 24-hour post-open heart surgery period, his condition will be monitored by doctors to ensure that any swelling of his chest cavity subsides. We expect them to be able to sew him back up sometime over the weekend. If all goes well, which we fast and pray that it will, the atrio-ventricular canals (holes on the inside of Bridger's heart) that he was born with will be completely repaired and his precious little body will begin thriving on roughly twice the oxygen it is getting now.

Needless to say, we are both anxious and eager to undergo this important step in Bridger's development. His surgery will be performed by Dr. Gary Lofland, an expert and leader in the field of pediatric cardiac repair.

As I type this, I'm in Chicago finishing up a 3-day trip. On Wednesday night, I get back to KC around 7:00 p.m. I'll hang around the airport a bit, because at 7:30 my mom arrives from Salt Lake City. She's coming to watch our three oldest kids while Jana and I spend most of our weekend with Bridger at Children's Mercy hospital. We check him in on Thursday morning at 8:30 a.m.

We are grateful that Mom is able to be here with us during this procedure. It's nice timing with Christmas, too. The kids are eager to have Omi around. She returns on Sunday, the 21st, and Jana's parents come after Christmas to spend another week.

Although the timing of such an undertaking might seem unfortunate, we're actually feeling quite blessed to be focusing on family so acutely during the holidays. I don't have work again until January 12th; it will be nice to have this time at home together to help little B recover.

During this crazy time, our thoughts are naturally turned to those of you who have made such a profound impact on our lives. We sincerely hope and pray that your Christmas is filled with the blessings of friends and family and everything that brings the joy of our Savior, Jesus Christ, into your hearts.

Long Overdue Update

Bridger's 3-month old portraits.
























Annual Kansas City Down Syndrome Guild Buddy Walk fund-raiser at the Chiefs' stadium. They had a carnival, a mile-long walk and lunch for over 7,000 people! Thanks to those of you who supported Bridger's Brigade! Here's Bridger with his gold medal, even if he slept through the entire walk (or should we say "carry").





Many of the Chiefs' defensive linemen were on hand for a photo opp. Recognize this guy? That's okay, neither do we.





Something tells me Conner isn't exactly "lovin' it."


Dawson's 5th birthday party.



















Our last boat outing in September

Conner skiing with the cheater rope.