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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Tomorrow is the big day...

Finished with all of our pre-procedural interviews...in total met 7 doctors, 2 nurse practitioners and a social worker with 1 ECHO and 1 more ultrasound.  The overall impression is that we are "good candidates" for the procedure so that is encouraging!  Based on their numbers baby Newman will be #144 to have a fetal cardiac cath intervention, #26 to have the septal defect created for the HLHS/RAS condition and #6 to have the actual atrial stent placed.  They will start tomorrow at 8:30 and are going to try to do the procedure with an epidural instead of general anesthesia.  They encourage patients to bring an ipod to distract them but it seems it would make you a lot more anxious to not know what everyone was saying the whole time you were lying there, especially knowing that they were probably talking about your baby.  I am going to try to stick it out listening to the play by play.  At least anesthesiologists have no trouble versed-ing you if you freak out, become hypertensive or "are just getting really bored" - his words not mine!!

After hearing too many more statistics about our little guy's chances today we are still feeling confident that we made the right choice to come here and now whatever happens is out of our hands.  There is already a plan for him and we are just hoping the plan includes us getting to come home and let those little cheeks fatten out for 3 more months so we can give them big kisses in February.

Now faith is being sure of what we hope for and certain of what we do not see.  Hebrews 11:1

love you baby boy!!

3 preop appts down and 2 or 3 to go...next up is anesthesia.  Apparently if you want to give medicine to a fetus, you just inject it in his bottom - who knew?  Comment by the us tech - he certainly is very active...yes he is.  She hasn't met his big sister :)

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We made it!

We arrived safely in Boston and with the aid of our mad-mass transit navigating skills (iphone gps) managed to make it to our hotel via the MBTA!

Our first appt is at 8 am tomorrow (the fetal ECHO w/Dr. Tworetzky) - then apparently there is 4 or 5 more to follow...we will keep you updated on any new news.

"When you come to the edge of all the light you know and are about to step into the darkness of the unknown, faith is knowing that one of two things will happen. There will be solid ground to stand on or you will be taught to fly."

I love this quotation...and very fitting as we leave tomorrow for Boston.  For those of you we talked to already -we will keep this updated with our news as we get it.  For those of you we didn't talk to yet, the story is below.

We will be arriving in Boston tomorrow night and have our fetal ECHO at 8 am Wed.  Then I have an appt with an OB, a perinatologist, an anesthesiologist and another full ultrasound.   The NP said in her email after I bugged her about times and locations "don't worry that you don't have appointments scheduled."  For her to think that that wouldn't drive me absolutely bonkers I must have shown some restraint in my correspondance thus far - a good accomplishment!  Tentatively the procedure will still be Thursday morning so we will keep you posted. 

In the meantime, prayers, prayers, prayers please!!

You can never be too prepared!

(It never hurts to keep practicing diaper changes!!)

Since the beginning...

Since his ultrasound our little guy has been busy with appointments.  He still appears to be growing at a steady pace with a heart rate in the 140s.  Most of the amnio results are back and normal so far.  His first ECHO was more disappointing.  The condition was confirmed but we found out he also has a restricted atrial septum/intact atrial septum which is a problem with this condition even in utero as the blood cannot be shunted from the broken left side to the functioning right causing back up into the pulmonary veins and risk for lung underdevelopment.  Babies with this combination have shock and cyanosis immediately at birth and require urgent cardiac cath or surgery to create an atrial septal defect to improve their oxygenation.  The mortality is high.

We have been provided with some unbearable choices, but one very hopeful opportunity.  A pediatric cardiologist at Boston Children's, Dr. Wayne Tworetzky has done (at last count) 143 fetal cardiac interventions directed at several conditions, one of which is hypoplastic left heart with intact atrial septum--in this procedure his team places a stent through the baby's atrium with the goal of shunting the blood to the right, hopefully allowing better lung development and a better change of stability at birth.  He published his first 7 cases of this particular intervention (before they used actual stents) in 2004 and the results were not good, however there have been great strides and he thinks now this could decrease our little guy's risk of requiring an immediate surgical septoplasty of 50% or so - a MUCH better statistic than we have heard so far.  He reviewed his ECHO and feels he would be a good "candidate" for the procedure, which is not without risk, but is the first proactive and tolerable choice we have been given. So- with hope, fear, faith, love and a map of the subway system we are going to Boston on November 15th.

It's only the beginning...

Well, the beginning was actually 22 weeks and 4 days ago (by ultrasound) and of course we couldn't be more excited that just 2 weeks after Valentine's day we would have a brand new addition to cuddle with the rest of the winter!! 
Our formal 20 week ultrasound was on October 3rd, 3 days before we were leaving for NYC to visit uncle Cody.  Baby Newman proudly displayed right away that he was in fact a little guy.  He seems already to have a great personality, even giving a thumbs up before he would hold still to gather his stats.  Head circumference, femur length, kidneys, stomach and bladder all looked great -seemed odd though that the tech kept skipping over his heart.  She pulled up the doppler to get the HR (fine of course) but moved away again, then, of course he rolled over one more time and she told us "maybe you'll have to come back for a second scan."  No way.  So more scanning...I was just trying to count the chambers - 4 - but something looked off.  What do we know though - most doctors can identify that something is in fact fluid, a kidney or a baby on an ultrasound and that's about the extent. 

So, we waited for the perinatologist.  Same thing, skipping around over the same checklist, then spending WAY too long on the heart.  As he was labeling you could see the left ventricle was much smaller than the right, but it was there.  We knew something was really wrong then but not sure exactly what -- he finally something to the effect of there is definitely something wrong with the heart.  We were taken to another room and waited a few more minutes.  Then he came back in and handed us a piece of paper with an order for a fetal ECHO with below that written the diagnosis:  hypoplastic left heart syndrome. 

It goes without saying that you can't even begin to fathom hearing something like that...not even if you are the most paranoid of pregnant women (who may have already rented a doppler to check your baby's heart rate independently of the OB), and once you hear it you certainly can't believe it.  We spent the rest of the day October 3rd with Addy at Loose park being more thankful than ever that we have such a perfectly wonderful and healthy daughter but so devastated that our baby boy had essentially a broken heart and we could do nothing but wait...