Christmas 2011

Davis learning to walk behind the awesome car that Zach and Katie got him for Christmas

Having fun opening gifts

Meeting the horses

Trying out uncle Jason's new headphones

We have a date

We got a call from Dr. Dearani's office and Davis's heart surgery is scheduled for Wed, January 18th.  We're gearing up for the trip, the surgery and everything that goes along with it.  Thank you for all your prayers and warm wishes. 

Meanwhile, we're preparing for Davis's first Christmas and are getting in the holiday spirit.  He seems to love all the twinkling lights and festive music.  Davis is such a trooper and truly doesn't seem to be acting any differently despite his large heart.  He's still in love with his O2 cord and is excited about tasting all sorts of new foods.  So far, blueberry yogurt is his favorite but he also loves all veggies he's tried so far as well.  The thing he hates most is apple sauce, which seems so strange to me, but I think it's more about the consistency than the flavor.  We'll just keep trying new things. 

Merry Christmas to everyone and a very happy new years.  2012 may just be our best year yet...with our heart healthy, happy, handsome baby boy.

Enjoying an asparagus snack

Playing with his O2 cord

It's GO Time.

Well, we got the official call today that Davis needs his valve surgery in January. His heart is getting larger and the cardiologists here in Denver think it's time. Best to go into surgery while he's healthy, before things start to go bad. So the process has been started and we're just waiting for the surgery date next week from the Mayo Clinic in MN where it will be done.

I have mixed emotions about all this happening so soon.  On one hand it's great that he's made it so far without any surgical intervention and he's certainly better prepared now than he would have been in his first few weeks of life.  And he's getting the cone surgery; done by Dr. Dearani at Mayo, which is what we've always hoped for and will in effect "fix" his heart, so that's all great news.  But he's still so small and vulnerable that it scares me a lot.  They've done this surgery on infants before, but always say it's preferable to do it when kids are a bit older (2-9 years old) since their hearts are larger.  But we are in the best hands possible and i can't help but feel that we're doing all we can and the rest is out of our hands.  So please keep us in your thoughts and prayers mid-January. 

Video of Dr. Dearani talking about Ebstein's Anomaly

Slow Progress

We've had a wild 2 weeks since my last post.  While everything seemed to be going perfectly, and we were celebrating Davis being off the O2; it turned out to be a short lived celebration.  2 days later, we checked his blood oxygen levels and they were very low (79 when they should be 90).  So we called Dr. Jone and she initially thought his heart may be shunting blood right to left since he was healthy otherwise.  So it was a really hard day for me, and we put him back on the oxygen.  I was thinking he had additional heart issues and was really upset and trying to understand how things took such a bad turn.  But then the next day he woke up feeling truly crappy and showed all the signs of a bad cold (chesty cough and lots of congestion).   Normally this would be bad news, but in our case, it explained everything happening with his O2, so i was thrilled!  No additional heart problems, just a cold.  We called Dr. Jone to let her know and she confirmed that the cold would cause the drop in O2 levels, and said we'd re-assess once he's feeling better again.  :)  Meanwhile, Davis has given the cold to me (so sweet) but we're both feeling much better already.  At an appointment with his pediatrician last week, they did a mucus sample lab test and told us we have Rhinovirus, which is basically a bad cold.  I'm just happy we were able to get better before Thanksgiving, as I can't imagine anything worse than not being able to taste my favorite meal of the year.  ;)

In other news, we signed Davis up for swim class at a local rec center back in early November.  He has been loving the pool and the opportunity to kick, splash and swim around with mom and dad.  He's even gone under the water twice now and didn't seem to mind at all!  He just pops back out...bats his big eyes a few times and looks at us like "what was that!?".  He's definitely a water boy and I imagine he'll be a great swimmer in a few years.  We had to skip a few classes when Davis got sick, but we're planning to go again tonight for the last class.  I plan to sign him up for another round since he likes it so much and it's a great place for him to meet other kids his age too.

We're still working on the transition to solid foods, but Davis isn't convinced yet.  Sometimes he does great and seems to love what we're feeding him, but other times he acts like it's poison.  We've tried rice cereal, oatmeal, bananas, sweet potatoes, applesauce and pears so far.  He's very interested in food, especially what we're eating.  And he likes sitting in his high chair, and playing with the food on his tray.  So i think we're close.  We just need to get him past the gagging reflex which seems to ruin all the fun of snack time.  We may start working with an OT to get past that issue since it seems to be the last hurdle on the road to solids.  Wish us luck!

Davis-1, Oxygen-0

Today calls for a celebration!  We had an appointment with Davis's cardiologist and she gave us the OK to take him off the oxygen.  We are thrilled with this good news and Davis seems to LOVE not having the cannula on his face anymore.  At the appointment, they did an echo scan and an EKG and all looked great.  His right atrium is still very large, and they'll keep an eye on it over the next few years, but it's no larger than before.  About 3 weeks ago, Dr. Jone called me with an idea.  She had been looking at some recent studies about infants in the NICU who were on Sildenaphil (viagra) to increase blood flow to the right side of their heart and had great success.  There was no mention of 7-8 month olds using this drug, but she consulted with the team of cardiologists at Children's Hospital and they thought it may work for Davis.  So we've had him on this drug for about three weeks now, and today was the official evaluation on how it was working.  His blood oxygen levels are staying over 90 off the oxygen, so she said he didn't need it anymore.  :)  We'll keep the tanks and machine at the house just in case he needs it at night or when we take him into the mountains, but he definitely won't need it anymore during the days in Denver.  We're so proud of his continued progress and ability to conquer every hurdle he's given.  What an amazing little boy we have.

Pumpkins!!!!!

We had a wonderful fall family day together on Saturday. We all met in Boulder for the farmers market where we got a huge beautiful mum and some yummy soup fixins.  Then we drove over to Rock Creek Farms in Broomfield to pick our pumpkins.  Davis had a great time and we all loved sharing this first with him.  

Full Swing Teething

Davis has started teething.  He is going through phases where he's in a lot of pain and cries lots. We've tried giving him refrigerated gel teething toys, other toys, etc to keep him happy. But so far, we've had the best luck with frozen mini bagels, sliced apple and then his constant fallback...the oxygen tube.  No teeth yet, but i have a feeling they're on their way!

Davis Does the East Coast

We've spent the last week traveling with Davis and showing him some of our old stomping grounds back in MD and VA.  We flew into Baltimore and spent some time with Kelly's parents, sister, niece and nephew, and several family friends. Then we drove 6 hrs south to the Outer Banks of NC, Corolla specifically and spent a week down there with Kelly's family.  There were many firsts for Davis (the flight, seeing the ocean, being out of CO, meeting cousins/family, etc), and he did great at every step.  He slept through most of the flights there and back, and only cried a few short times.  He took the long drive in stride and again slept for the majority of the trip.  The ocean was beautiful as always and we had perfect weather.  Davis was amazed with the ocean and loved putting his feet in the water and wanted to touch everything.  He loved meeting Sydney and Josh (his cousins) and we had a great time seeing all the cousins together.  I think the highlight for Davis was swimming in the pool, where he truly seemed to come to life.  As soon as we put him in the water he started kicking and moving around like he already knew how to swim.  :)  He starred at the water and we had to force him to get out so we could warm him up, but he just wanted to go back in!  I think he may have some swimming lessons in his near future.  Another huge highlight for Davis was that he didn't need oxygen at sea level.  We had a portable oxygen concentrator that we used for the flights, but when we got to the Grimsley's house, we tested his levels and he was doing great without the machine, so we were able to keep him off O2 the entire time.  That was such a great gift for us all, and it was wonderful to see Davis free of all cords and comfortable for a while.  Putting the canula back on was tough on us all, but he seems to have adjusted well and doesn't seem to mind it anymore.  Just the standard yank here and there.  Overall, we all had a great vacation and are glad to be home and getting back into our old routines.

My Uncles Keep Me Lookin' Fly

Custom made shirt from Jason

Very cool Mexican summer shirt from Zach & Katie

Congenital Heart Walk

On August 28th, our whole family and the Beldocks participated in the Congenital Heart Walk out by Children's Hospital.  We had a great hot day for the walk and all had lots of fun together.  We walked 5k, Davis napped in his stroller and then we all went out for lunch afterwards.  What a great day!  It was so inspiring to see so many people walking and raising money for such a great cause. GO TEAM DAVIS!!!!

Davis has a very important message for you

We gave Davis a bath on Saturday and afterwards, he was very animated and had a lot to say. 

The Baptism

Davis was baptized on July 10th at Our Lady of the Pines Catholic church in Conifer.  This is the church where my dad is a deacon and my dad baptized Davis in a beautiful ceremony following the morning mass. Lots of friends and family were there to show their support.  Davis wore a baptismal gown which has been in our family for many years.  My aunt and mom both wore it as well as my cousins, and my brothers and I, so it was very special to have him wear the gown too, and continue the family tradition. Following the ceremony we had a lunch reception at my parents house and everything worked out perfectly.  Even the afternoon rains held off till the last guest was on their way home.  :)

Getting Davis dressed and ready for his big moment

 

Davis finally met Aunt Dee!

Oxygen is our friend

Davis and I had an apt with his cardiologist D. Jone yesterday and all
went well.  He had an echo (ultrasound of his heart), an EKG, they
weighed him, checked his height and O2/blood pressure.  He's still
12lbs 2oz (same as last week at the pediatrician), and 24.25" long.
This is a little more than last week, but the height testing is pretty
open for error, so it's probably still the same.  His O2 levels were
great (high 80s/low 90s), but Dr. Jone wants to keep him on the oxygen
since his heart is pumping blood left to right and right to left,
meaning that he still has high pressure in his lungs.  The blood
should only be going left to right, so till that is the case, he's
staying on the O2.  I didn't realize this was a factor and was all
excited when I saw his numbers looking good.  But in the end, we want
what's best for Davis, so it's ok.  I just hope he's off the O2 before
he starts really crawling.  My next apt is in another month, so we'll
see what things look like then.  She also said his growth is looking
great, and didn't even want me to meet with Paige, the nutritionist.
:)  Everything else looked good and she said he's doing great, as are
Kelly and I with his care.  It was a nice visit and Davis was awake,
alert and very happy (smiling and talking ) the whole visit.

Davis and I waiting for his apt...and trying to wake up.

Getting his Echo.  He was very interested, holding the cord, looking at the screen, smiling and talking a ton.  :)

Growing like a weed!

Davis has had an exciting several weeks.  He spent a long weekend up in Evergreen with mom, nana, papa and bisnonna while dad was backpacking with his guy friends.  That was a lot of fun, and he especially loved all the attention, baths and extra cuddles he was getting up there.  :)  He had his first 4th of July party and enjoyed dancing with friends and smelling the delicious bbq.  But he wasn't such a fan of the fireworks.  The bright lights were great, but as soon as the loud boom sounds started, he began crying and had to be taken inside.  It's a lot for a little guy!  Then we had Davis baptized at my parent's church in Conifer, with a nice reception at my parent's house after wards.  It went very well and he only cried for a moment after the third scoop of holy water was poured on his head.  What a trooper.  He seemed to really enjoy the party after and got to meet lots of new friends who had been praying for him all along. We also had an appointment with Davis's pediatrician.  The appointment went very well and they said he's looking great!  He's now 12lbs, 2oz and 24" long.  His oxygen levels are also looking fantastic, but we're going to keep him on it for now in the hopes that his levels get a bit higher on his own before we let him go without the additional help.  And then he got 4 immunizations (3 shots, 1 oral), which he wasn't too thrilled about, but was very tough and handled it well.  They said we don't need to go back for 2 months!  That night he had a slight fever and wasn't acting like himself (crying more than normal), so we gave him a little bit of Infant Tylenol and lots of extra cuddles, and he was acting normal again the next morning.  And finally, he got to meet his cousin Jillian who flew in from Indiana to visit with our family and meet Davis.  We've had a great time with her so far and even took Davis bowling last night! So all in all, Davis is doing fantastic and growing lots lately.  We've noticed he's already fitting into his 6 month clothes, and the 3 month clothes are getting tight (more in length than width).  He's looking more pudgy and like a healthy growing baby boy lately and his neck muscles are getting really strong!  We're enjoying every day with Davis and he's just getting cuter and cuter. 

Hanging out in Evergreen

Family bowling at Lucky Strike

Davis on the 4th of July