4 weeks to go!

It's amazing how quickly time flies by...4 weeks from today is the big day.  Had another "weight check" ultrasound today and our big guy is estimated to be about 5 lbs 10 oz (putting him around 7 lb 10oz by 2/21)!!  He had no edema (no sign of heart failure) and overall all the measurements looked good.

As an aside, always interesting to be in medical training and get the experience of what I feel like are the most awkward encounters with other medical trainees...there was a resident helping with Addy's csection and long after my OB left the room, the resident was there sewing me up instead of throwing in some staples and being done with it (at my OB's request).  Sutures are much better so of course I told her thank you but got a pretty snappy "your welcome" -- sucks to be the loser I guess but then it's weird when she comes and checks your incision every day.  This time around I have been seeing a lot of perinatology fellows - some are really good and you can tell this easily because they truly appreciate how fantastic most ultrasound techs are at what they do and they ask them a lot of questions/rely on their opinion.  Not so much the guy today..."I'm having some difficulty getting good views of the heart."  Really?  Why not try the thing beating with the big echogenic thing bobbing around in it...  He could find the kidneys really well - I know because he pointed them out three times "this is just a really beautiful view of the kidneys".  If you say so buddy.  I told him about baby Newman's procedures in Boston (important that more perinatologists think of this valid option for possible treatment of hypoplastic left heart) and I explained that the stent was now lodged in the ventricle.  "Cool"  "I mean, it's so cool what they can do" (Good save doctor).  It was very nice of him to try and get a 3D pic of our little warrier's chubby cheeks but it was a fail.  I did see a cute hand though!

We couldn't be more thankful that the last couple months have been very peaceful and relatively uneventful aside from all the appointments.  Despite the awkward way today's perinatology fellow put it - a good reminder that though not "normal" our little guy's heart is amazingly woven, just as it was planned to be and it is pretty cool that there are people bright enough to come up with ways to "adjust" it a bit to make it work more effectively once he enters the world.  If he comes out crying, stays a little pink and we get to hold him before he goes to the NICU- that will be the most amazing thing of all!!! (and we will be praying for those couple minutes!!)

Ultrasound pics

Lots and lots of ultrasounds...baby Newman's profile and a face view - getting some chubby cheeks already!  The first non-stress test yesterday went well, apparently he is the only one not stressed - a blessing!!!

ECHO & Surgery Appt.

We met yesterday with part of baby Newman's care team.  Since his arrival date is 'tentatively' scheduled (assuming he doesn't have his own agenda) the cardiologist, cath lab, etc. should be ready for him.  We also met with one of the Mercy neonatologists, very helpful as now we know the general sequence of events for the morning...if all goes as we are hoping we will hear his first cry sometime shortly after 730 am, he will get whisked next door for his umbilical lines and prostaglandins and if he is stable we get to see him (and maybe even hold him!!) before he goes to the NICU. 

For the next few hours he will either get settled into the NICU or will go to the cath lab to get a bigger atrial septal defect (enlarging the one they made in Boston even more now that there is easier access to his heart).  Ross will be at his side as much as possible and I will be arguing with my 2 nurses that there is really no reason that I have to lay in a bed until I can move my legs when hospitals have wheelchairs (I could be wrong but pretty sure that's why someone came up with that idea, right?). 

The first big surgery is called the Norwood Procedure.  There are several varieties but at Mercy they do the classic Norwood (the newer procedures don't have any better data for them really).  It will likely be sometime between day 4 and 14, mostly depending on how stable he is and OR scheduling, etc.  In this surgery they enter the right atrium (top blue chamber) and use a piece of tissue graft to make a new aorta out of the old pulmonary artery (where the stitching is) so that it can be used to carry blood to the body.  Then they put in a temporary shunt (BT shunt) that will take some of the used blood from the body to the lung to get oxygen.  It returns the same way as normal through the pulmonary veins (in this picture the little red vessels).  Lastly they cut out any of the remaining atrial septum so the blood can freely move across from the red to the blue side so some of the blood that goes back to the body has oxygen from the lungs in it. 

When we asked about if they thought the stent could be retrieved at this time (it is now stuck in the bottom blue chamber)...the answer was "that will take some more thought" - good.  It is REALLY scary if people tell you they know exactly what to expect from something - you can't be confident what to expect from anything!!  After his heart surgery he will most likely go the the pediatric intensive care unit (with the bigger sick kids) as that is where they routinely do the post-surgical care.  He will have a ventilator, some chest tubes and a bunch of IVs at that point.  He will [obviously] still be adorable!! 

We also had a follow-up ECHO and though the blood flow in the pulmonary system looks like not quite as much blood is getting across the atrial septum hole as it was a month ago overall it still looks much better than it did at the beginning of November. 

We have 1 more ECHO the week before, and 1 more ultrasound to measure his weight.  In the meantime, I will be having twice weekly non-stress tests to make sure his heart rate is responding well to stress.  I am guessing he will do fine--Addy has been poking him for 8+ months and he usually kicks back :)

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!!