2.21.12.

Baby Newman now has a birthday set!  At this point still more frightening than exciting but he is scheduled to arrive directly at Children's Mercy hospital...he will be baby 50-something born in their new maternal-fetal center just a short elevator trip away from the nicu (instead of an ambulance or helicopter flight away)...a little too much excitement for day of life #1. 

According to an US estimate yesterday he weighs about 4 lbs 6 oz so hopefully he keeps that rate up!  Everything else is looking good still-so far no signs of heart failure.  As always, thanks for all the positive thoughts and prayers!

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Merry Christmas!

Happy Holidays!  We had a great Christmas--went to St. Louis last weekend for our Johnson Fam Christmas party so got to visit with 2 of Addy's Great-Grandmas, a new cousin and lots of Johnsons!  Grandma Linda and Grandpa came to visit on Friday night and stayed for the weekend to come to eat turkey, go to Christmas Eve service & watch Addy open presents from Santa!!  Addy's fav presents were a princess dress, highchair, camera and play cookie set.  Camera is by far the funniest - we played with this all morning and somehow she got this idea to make you pose -- she tells you to stand across the room and "go like this" and demonstrates how to cross one leg in front of the other.  I know I take an excessive # of pictures of this child but I have never had her do that...hmm.  She has a lot to say nowadays - our conversation in the car today:  A:  "Momma, that truck is dirty.  We do not eat tires - they are not food.  Food goes on the table...you get some milk and some applesauce and a plate.  That is food.  You eat food with a fork."  M:  Yes, Addy that is right, tires are not food.  A:  "Tires are yucky.  Where is the monster?" (Zhu Zhu hamster)...amazing the way their little brains process random thoughts.

Our favorite Christmas Gift was from my Aunt Chris, Uncle Eric and cousins Kelly & Rachel - they made donations to http://www.littlehearts.org/ on our behalf and for everyone's gift this year - very awesome!!!  I even was given an small warning of this gift beforehand - don't know if you did that on purpose but just barely prevented sobbing in the middle of family Christmas party -good call.  Love you guys!! 

Finally, the Echo!!

We had our first post-procedural Echo today...as of the day-after procedure baby Newman had moderate tricuspid regurgitation.  It looked like this was related to the stent that was now hanging out just under one of the valve leaflets - they weren't really sure what to tell us at the time what the overall implications would be, especially being so early, knowing it could still move.  At the ultrasound last week there was still regurgitation but it looked optimistically slightly better.  Also he still had a fairly significant pleural effusion...

While we were waiting for the room to be ready today the cardiologist braced us for the fact that continued regurgitation in a valve (when only 2/4 are doing anything at all) would be a very poor prognosis - heart failure, etc.  (One of those moments when you really just wish you had just written on your forehead - "Please, I don't want to know - just LIE to me today :)" but the Echo was... AWESOME!!!  NO regurg at all!  Also, the pleural effusion that still looked pretty significant last week was completely gone.  No way to top that Christmas gift!  So much gratitude!!!

Since I can't pop open a bottle of champagne to celebrate...sugar will have to suffice.  And if you aren't feeling the most grateful today - eating this pie we made tonight will surely fix that.  It may be the best pie on earth, just note you actually have to cook it closer to an hour (learned from attempt #1 - no worries, it didn't go completely to waste - I may have scraped off the cooked top and ate most of that before trying my hand at pie #2 :)  http://www.food.com/recipe/old-fashion-oatmeal-pie-11757

Follow-up ultrasound

So back in KC...had follow-up ultrasound today and overall everything looks good.  Baby Newman is still very active with a great heart rate.  He had no fluid around his heart, but a little fluid around the right lung.  This could be leftover from his surgery and there were no other signs of heart failure so no cause for worry at this point.  The stent that got left in his right ventricle is still in about the same place so hopefully there is very little chance it will migrate somewhere more dangerous.  His head and femur are still measuring right on target so he is growing well and has made it to over 2 pounds!

Next exam is the ECHO 12/6 - hoping for more good news!! 

Happy Thanksgiving!

We went up to Minnesota for Thanksgiving and had a great trip!  Shopping, turkey, Choo Choo train ride, Hugs from the Backyardigans, 2 hockey games, Christmas pictures, Holidazzle Parade, breakfast at Lake Elmo AND Grandma Ginny's (GG's) Birthday!  How can you go wrong??  So much to be thankful for this year!!!  Here are a few of my fav pics...

headed home!

Baby Newman looked great on ultrasound today...had a right-sided hemothorax (blood around lung) which is expected but was very active and kicking up a storm like nobody attacked him with needles yesterday!  The 2nd echo showed a stent that got lodged in the ventricle (round 1) is interfering some with the valve but hopefully it will move itself a little further down in the coming weeks and get out of the way.  Most importantly the arial hole is still big and letting plenty of blood through.  Overall amazing work & couldn't have hoped for more!!

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thank you for your prayers!!

As with many things in life the procedure didn't go exactly as planned but the end result is baby Newman now has a hole in his atrial septum (a good thing) which is diverting extra blood from back-flowing into his lungs.  This will hopefully allow his lungs to better develop and make him more stable at birth so he can make it to his first surgery.  He needed 3 punctures to get the hole so has had a rough day but he is a trooper!!  He had an ultrasound checkup a couple hrs ago and has a good heart rate and was starting to move around again--hoping he looks just as good tomorrow!

Again, we can't thank you enough for all the prayers, messages & well wishes :)

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