Sunday, January 29, 2012

Celebrate Good Times

Tonight we had a family celebration for Davis coming home safe and sound. The food we missed the most in MN was good Mexican.  So we picked La Loma restaurant and met up with my parents, Jason, Zach and Katie and enjoyed a delicious meal together. Davis had a great time and ate a huge dinner himself. :)

Davis was stuffed

Sharing his puffs with Papa

Friday, January 27, 2012

Home Sweet Home

Well, we made it back around 3:30pm today after a big day of traveling. Yesterday was pretty unexciting. We spent the morning walking around the mall and Trader Joe's to kill some time and get some exercise. Then we ate lunch by the pool to try to keep Davis entertained. There were a million kids playing so he enjoyed the scenery and ate a good amount of yogurt and puffs, which made us feel like he was getting back to himself again. Then we laid low and ate at the hotel restaurant (tried the Walleye fingers...pretty good!). We did swing by the Ronald McDonald House Bingo game for a while and Davis got the first Bingo! We picked out "Where the Wild Things Are" as his prize and got a chance to say goodbye to the volunteers who were so amazingly nice, and then to bed early. Today was just two quick flights to get home, and Davis slept on both which made our trips nice and smooth. It was such a great feeling to touch down in Denver and know that we're back with the new and improved Davis 2.0 (props to Scott G. for that nickname). My parents picked us up at the airport with a fun sign and all. Seeing their faces was just the excitement Davis needed to come to life again. He seems so happy to be home and to see Ella. She gave him a few kisses and looked really glad to see him and us all again. Davis also had a terrific appetite tonight and gobbled up a whole YoBaby yogurt, a bunch of snacks and then a few small cheese ravioli after that. Needless to say, he went down to sleep pretty easily and we're keeping our fingers crossed that he sleeps well tonight so we can too. So we're all unpacked, just ate some dinner (compliments of mama K) and plan to spend the next few days settling into normal life again.

Wednesday, January 25, 2012


Davis is officially out!  We were discharged around noon today and couldn't be any happier about being out of the hospital and on our way home. The docs all said he's looking great and they're very happy with how the surgery has turned out. The only real activity for Davis in the hospital before we could leave was one vaccine and the infamous car seat challenge (just to make sure he's getting enough oxygen when sitting in his car seat) So now we're on our own and Davis has 6-8 weeks of recovery ahead before he'll be fully back to normal. The only bad news of the day was that Davis has an ear infection.  He had been grabbing at his left ear for a few days but everything looked ok inside...till today when they said it's red and inflamed.  So they gave him a dose of antibiotics and we filled the prescription to keep it going for 10 days.  Not a big deal in the scheme of things, but it is his first ear infection and he seems very uncomfortable and irritable. He also didn't sleep much last night (probably due to his ear too), and he's still gassy, so it's a trifecta of problems that are making him upset. So Kelly and I have been taking turns walking him through the hotel halls and taking him to look at the pool (which is huge, has a waterslide, and is fully of activity). We're hoping he gives in and goes to sleep soon so he'll feel better in the morning. Tomorrow we have the whole day free, so we'll pack, venture out to mail a box home and then grab some dinner somewhere. Friday we catch our flight back to Colorado and we are SUPER excited to get back. It's been a long adventure...although it really does feel like it's gone by quickly. The Ronald McDonald house is moving families back in on Friday, but that's the day we fly out. So we're riding out the rest of our time in Rochester here at the Ramada. Hopefully tomorrow goes by as quickly as our time in the hospital and we'll be on our way home soon.

Cruising around the hospital with Nurse Erinn for his car seat challenge. He passed. :)

Tuesday, January 24, 2012

Home Stretch

Davis had an Echo and x-rays today to make sure he is indeed ready to be discharged tomorrow.  The Echo looked great and the docs were very happy with how his heart is functioning.  He still has a very small amount of regurgitation into the right atrium, but nothing compared to pre-surgery.  The doctor said that some people with completely normal hearts have his current amount of regurgitation and we shouldn't worry about it. They said that his heart is in effect fixed, but will need annual checkups and could potentially need a new valve 20 years or so down the road if his wears out...but only time can tell if that will happen.  Every person is different and they just can't guarantee anything about his future.  But we've done everything we can for his heart and all is looking very good right now. His x-rays looked great as well but showed that he still had a lot of gas in his system that most likely came from the CPAP he wore for a while.  That forces air into his system and it's typical to see lots of gas after using the CPAP.  So he was pretty fussy and uncomfortable most of the day until he worked that out of his system. The nursing staff here is amazingly nice and helped us massage his belly and take him for wagon rides to cheer him up. By dinner time he was feeling much better and just wanted to cuddle as he was exhausted from his fussy short naps today. I have to say, he was as adorable as I've ever seen him as I rocked him to sleep tonight.  Imagine a totally content little guy with huge puppy dog eyes just sitting in my lap looking up and getting sleepy.  It was my pleasure to cuddle him to sleep.  Once we moved him to his crib he woke up a bit, but Kelly was right there to give him some booty pats to get him back to sleep.  It was great team work, and made us feel much better about leaving him for his last night in the CICU.  :)  So tomorrow we'll take our final shuttle to the hospital and get everything in order for discharge.  The only thing on the schedule for him tomorrow is one lab (blood draw) and one RSV vaccine and then we should be out the door.  It's going to feel SO good to take him back to our hotel and know that we're on our way home.  Our flight leaves on Friday, so we'll have Wed afternoon and Thursday to get packed, and let Davis get a bit more comfortable at this lower elevation.

Monday, January 23, 2012

Happy Guy

Davis was in a good mood today and seems to be feeling much better.  I guess burping, farting and 8 poopy diapers will do that to a guy! We finally saw his amazing smile this morning and a few more times this afternoon. That smile is worth a million dollars.  But let me back up a bit...we had our CPR class this morning at the Mayo clinic building and it went great.  It's interesting that they change the rules every year, so now we know the cutting edge techniques in case he chokes or stops breathing. Davis no longer has any lines, catheters, etc. in anymore!!! Only a monitor to measure his blood oxygen levels and electrodes to monitor his heart rate and breathing.  He has been most interested in snuggling with Mom. Davis got to go on multiple wagon rides around the unit and seemed to enjoy them much more than yesterday.  He was putting smiles on patient's faces with every lap.  It looks like we will be discharged on Wednesday assuming all continues to go well. Davis will be going home on oxygen until we see how he does once we get back to elevation but doctors are expecting that he will not need it. His levels have been very good today and he has been away from the oxygen 'blow-by' tube most of the time. We are expecting Davis to be back to his 'old' self tomorrow.

Yeah for wagon rides!

Snuggling with Mom

Sunday, January 22, 2012

Tummy Aches and Wagon Rides

With every day there are surprises.  Today we realized that Davis is having some tummy aches caused by re-introducing breast milk into his sleeping tummy and bowels.  He's been guzzling milk over the last two days like it's going out of style, probably because he was so thirsty. But now he's paying the price and has had a lot of gas and poopy diapers to show for it. But in true Davis style, he hasn't cried once, just whimpers a lot, which is super sad and pathetic sounding. The good news is that as we were leaving tonight, nurse Diane was soothing him with a warm blanket over his belly and belly rubs which seemed to quiet him and make him feel much better.  We're hoping he can get some good sleep tonight so he feels better in the morning. He was really sleepy today and took lots of naps, so we'll see how that goes. Davis also got to nurse today for the first time, which he LOVED!!!!  I think he would have nursed all day if we would have let him. After the traumatic experience of surgery, it's really comforting to be in mommy's arms and nursing. The highlight of the day was a wagon ride that nurse Erin took us on. Because Davis wasn't feeling great, he whimpered most of the time, but I still think he enjoyed the change of scenery. We also had a visit from a Mennonite choir who sang to Davis which was pretty exciting. They were very nice and sang beautifully. Tomorrow Kelly and I are taking a CPR class downtown, so we'll meet up with Davis after that. He's scheduled to have his catheter and one of his groin lines removed tomorrow morning and we're thinking that will make him feel much better. Sweet Dreams Davis.

Saturday, January 21, 2012

Drip, Drip, Drip

Well...what started as a good day turned into a bit of an adventure for Mom and Dad. A pipe burst in the Ronald McDonald House and everyone had to be relocated to the Ramada. Unfortunately the hotel is quite a bit farther from the hospital so we can't walk back and forth anymore. They are expecting it will be four or five days before we can get back in. The RMH will be covering our stay while at the hotel and they gave us a bunch of cab vouchers to help get us back and forth when the hotel shuttle is not running. We feel really bad for the families with multiple kids who have to leave such a great place and lose all of the activities and resources that the RMH was able to provide them.

On the plus side Davis is doing fantastic. The swelling in his face is just about gone and he is acting like his old self again.  He got the go ahead to have some breast milk this evening so he knocked back a few bottles before bed. We were also able to hold him again for the first time since surgery.  It was a great feeling to hold him in our arms again.  In usual Davis style he is raking in the complements from all of the nurses, doctors, lab techs, etc., etc., etc.  'Oh, he's so cute!'....'Oh, look at those eyes!'.... 'Oh, he is such a sweet little guy.'  All of the 'Ohs' pronounced with a thick Minnesota accent. He seems to run with an entourage when we aren't around, every time we arrive at his room he's got crowds of people oohing and aahing over him.  They can't help themselves......Davis is pretty addictive.

Davis taking his first sips

Starting The Day Off Right

Kelly and I arrived at the hospital this morning to find a wide-eyed Davis sitting up and playing with toys.  What a great way to start the day!  They have already removed the CPAP oxygen gear and are about to remove his neck lines.  Rather than putting a cannula back on him for O2, they decided to try using a big tube pushing O2 in his direction.  I think it's fair to say that this is working just fine (see video below, turn volume up).  He's definitely hungry/thirsty, but they want to wait a few more hours before we give him breast milk to be sure he's doing ok off the CPAP.  Luckily, he decided to take a nap since he's been up since 5:30am playing and hanging out.  So maybe when he wakes up we'll have a bottle ready to go.  :)

Friday, January 20, 2012

Breathing Tube Removed

Davis made some good progress today. After reducing his pain medicine and sedatives the doctors were able to remove his breathing tube and chest tubes. He has been very sleepy all day and is just starting to come to. We need him to start coughing and crying to get some of the fluid out of his lungs. We never thought we'd be hoping for crying but certainly are at this point. :-)
Davis did need to be put on a CPAP machine (Continuous Positive Air Pressure) because there was a dramatic drop in his blood oxygen levels about five minutes after the tube came out. The doctors are not sure why this happened but are hoping that as more of the pain medicine and sedatives wear off that he will come off that machine as well.  He is starting to squirm around more and grab for tubes and wires; all very good signs. He hasn't opened his eyes yet but we are not sure that he can as they are still quite puffy.  It looks like he was on the losing end of a boxing match. Other than the breathing issue he is doing fantastic.  The medicine pumps are coming down one after another.  He is only on a few medications now and they are giving him Tylenol for the pain.  Hopefully tomorrow we can start getting something into his belly and get him feeling a little better.

Davis on the CPAP machine

Thursday, January 19, 2012

No More NO

Today was a good day of progress.  Our main goal for Davis was to wean him off the nitric oxide (needed to expand his pulmonary vasculature and improve his oxygenation) so they can then remove his breathing tube tomorrow morning (extubate).  So they slowly lowered his NO levels all day and then removed the machine all together around 6:00pm.  His levels are still looking great, so we're on schedule to extubate in the morning once all the docs are back (just in case).  They're keeping Davis sedated while the breathing tube is in place, so it's been fairly quiet and peaceful today...which is great so Davis can relax and rebound from the surgery stress.  Today he's a little puffy with extra fluid which is normal after surgery and being on the heart/lung bypass machine.  So they're also working on getting the fluid off before they extubate tomorrow.  Other than that, he's been very stable and quiet.

In other news, we finally got a room at the Ronald McDonald house just one block away from the hospital.  We're so excited to be there and have a consistent and luxurious place to stay till we fly home.  WOW, what an amazing place.  They couldn't be any nicer, or more accomodating and we feel so lucky to have a room there.  We just got the tour and can't believe how nice everything is.  We have a sleep number queen sized bed, a large beautiful room, we received a hand stitched quilt and stuffed frog for Davis, they have HUGE beautiful granite topped kitchens we can use, free food/snacks/keurig coffee, game room, craft room, lots of laundry facilities, and they also provide soap/shampoo/lotion etc if we need it. Honestly, I can't say enough about how nice everything there is and how excited we are to be staying there.

Lastly, the X-ray below shows Davis's chest pre-surgery (on the right) and post surgery (on the left).  I think it's fairly obvious that his heart is now MUCH smaller and his lungs can actually expand now.

Image on the left is from this morning. Heart is lighter color in chest, lungs are dark. You can see the wires holding together his sternum and all the tubes, pacemaker (bottom left) still in place.   

Davis this morning

The Ronald McDonald House (in nicer weather)

Thank You Thank You Thank You

We feel so lucky and blessed to have you all in our lives and honestly don't know how we would have made it through the last few weeks without your love and support.  Thank you so much for sending positive vibes, prayers and general support for Kelly, Davis and I.  We're overwhelmed with the outpouring of love coming from all directions.  It's times like these that you realize how important friends and family are in your lives.  We certainly feel the love and support and thank each one of you for your efforts.  Thank you.  XOXOXO

Wednesday, January 18, 2012

Into the ICU and on the road to recovery

We finally got into the ICU where we got to see Davis around 3:45 this afternoon.  After hours of waiting and worrying about how he's doing, it was a great feeling to see him, hold his little warm hand and know he is ok.  The docs are all very pleased with how his surgery went and think he's doing great so far.  He's currently on the ventilator and has a pace maker and about 10 meds/plasma going into ports in his neck and groin area.  He's got a long way to go before he'll be running through the house again, but every day he'll feel a little better. we're on the road to recovery.

He's Out!!!

After 4 hours of surgery the doctors have finished. They are still monitoring him for a bit to make sure his heart is stable.  Once they are done he will be moved to the ICU and we can see him shortly thereafter!!!
We were able to meet briefly with Dr. Dearani to get some details about how things went.
They performed the cone procedure to reshape his valve and removed tissue to reduce the size of the heart. They then tested him off the heart/lung bypass machine and based on his response they decided to perform the Glenn procedure as well. We can't wait to see Davis and will update everyone later tonight on how he is progressing.

The Waiting Game

We dropped our little man off with the doctors this morning and actual surgery started at 9:16am local time.  We expect him to be in there another 3-4 hours but will be getting updates along the way.  The staff has been amazing. We have done all that we can and it is out of our hands now.

Here is a picture of Davis this morning right before heading into surgery.  Cord in hand to keep him soothed, as usual.

Tuesday, January 17, 2012

Let's Do This

Today was good but exhausting for us all.  We woke up early and had appointments in different parts of the Mayo Clinic all day, from 8am till 5:30pm.  Davis was a champ (as always) and did a great job.  He always manages to stay in a good mood and flirt with all the nurses.  We started off the day with an echo (ultrasound of his heart), which they sedated Davis for.  Then we were off to get two chest x-rays, blood drawn, then an EKG.  After that we met with a pediatric cardiologist here and then the famous Dr. Dearani who will be performing the surgery tomorrow.  It was great to finally meet him and hear what he had to say about this cone surgery and Davis specifically.  He seems very optimistic about the surgery and broke it down for us into 4, maybe 5, steps. He will (1) re-shape the affected valve (cone procedure), (2) close a hole between Davis' right and left atria, (3) fold, or plicate, the right ventricle and sew it back together to make smaller, (4) remove some of the tissue making up the right atrium leaving the heart a "normal" size and allowing his lungs to fully expand for the first time. Then the Dr. will see how his heart is doing on it's own (off the machines).  At that point he'll decide if they also need to do the Glenn procedure which basically re-routes all of the blood coming from the upper body to send it straight to the lungs instead of through the heart first.  This would eliminate a lot of blood/pressure from the heart which eases the heart's workload.  The Glen procedure is more common and is done routinely on small children with heart disease.  So that's the plan, we're scheduled to report for surgery at 6am tomorrow. Keep us in your prayers and thoughts tomorrow.

Sunday, January 15, 2012

Ready Set Go!

Well, we're all packed and ready to fly out tomorrow morning for MN.  It's crazy how fast everything seems to be moving, but i think it's for the best...keeps us busy.  The next three days will be life changing for us all and we're excited and nervous at the same time.  We've had a nice, calm day at home today and Davis seems in great spirits.  Wish us luck and please keep checking back for more updates.

Monday, January 2, 2012

Happy New Year!

As we prepare ourselves mentally for the upcoming surgery, we all felt the need to escape for a relaxing time together as a family.  So after much discussion on where to go, we ended up in Crested Butte for the weeekend.  A friend let us use their house in town and it worked out perfectly.  The town isn't too high in elevation, it's adorable, very cozy slow pace and you can't beat the views.  We spent most of our time being cozy in the house or going for walks around town.  It was just the quality family time we were looking for and Davis seemed to have a blast.  He's been sitting up on his own almost flawlessly lately, and seems to like playing on the floor and being some what independent.  We weren't able to stay up till midnight to ring in the new year, but we did celebrate by going out to eat and then getting lots of delicious chocolates to eat back at the house.  All in all it was a great trip.  We hope you all have a wonderful 2012.  Happy New Year!