Aspen Has Her Final Echo

Aspen is at the five yard line now after completing her final exit Echo.  She was given a good grade on her test.  The nurse told us that she would be discharged tomorrow morning or so.  What a amazing baby she is, we (Karsten & Nicole) can't believe she will be able to go home after the fifth day.

Aspen Jumped Another Hurdle

Aspen jumped a big hurdle this morning.  The doctor's gave the ok to remove the chest tube and pace lines.  The nurses removed them this early morning.  Not a very fun procedure for the Aspen, they had to give a small dose of morphine for the pain.  She's a superstar, and endured the pain.  They will do a final Echo later this afternoon.

Aspen Leaving Cardiac Intensive Care Unit (CICU)

Aspen was just released from CICU to Children's Surgical Floor, one stop from coming home.
She finally ate solids and nursed really well with mom.  They removed two of her important pic lines, the arterial line in her thigh, and the line in her neck.  The next big hurdle for Aspen is the removal of the Chest Tube, which is still collecting fluid.  The doctor's say they may be able to remove it tomorrow, if so they watch her for 24 hours and if all is well, she may be able to go home over the weekend.

After Surgery in the CICU (Cardiac Intensive Care Unit)

Mommy & Daddy's "First Look" at me after surgery in the CICU.  They say I did awesome!  Mommy & Daddy did a tour of this place before my surgery and saw a 6wk old baby that had a procedure like mine.  It helped them be prepared for all the tubes and wires hooked up to me to help give my heart a rest while my fixed heart heals.

Open Heart Surgery Details

Mommy, Daddy, Nana Tana & Papa Todd walked down the long hallway to the entrance to the OR with Dr. Clarke.  Once we hit the big doors, they opened and it was time to say our Goodbyes.  There was a huge yellow line on the floor...no parents pass this point.  We all gave little Aspen hugs & kisses.   

Karsten held her for a few minutes.  I know he claims he never cries, but his eyes were pretty red as we handed our baby to Dr. Clarke.  We both admitted that was the hardest thing we've had to do thusfar in our life.  I don't remember the last time I cried that hard.  The tears just kept coming...even writing about it after the fact brings tears to my eyes.  Although I know we had to go through with this surgery I felt like I was sending my baby to HELL.  I would be scared to death and I'm an adult! I don't remember being nearly this nervous, even when I went in for my scheduled C-Section!  When we handed her over, she kind of looked at the Doctor saying, "hmm, your not my mommy or daddy" but our brave angel never cried once! We watched as her doctor held her in his arms and walked down the hall to the OR where they would be performing her surgery.  It was like that Poltergeist hall...ya know where it goes on forever!  As we walked slowly back to the Same Day Surgery Waiting Room Nana Tana & I were a mess...tears streaming down our faces.  Then something amazing happened.  In walks her Cartiologist, Dr. Polchalski, who diagnosed her partial AVSD.  He randomly gets assigned to the OR but never really knows when...but today he was going to assist in Aspen's surgery.  That lifted a small load off my shoulders knowing he was in there with the surgeons watching over the surgery.  The Lord new I needed and extra dose of His Tender Mercies that day and this was definitely one of them.

She was went into the OR @ 7:38 am. It takes about 1.5 hrs from when they get in the OR before they make the incision to do all the prep work.  Our first update would be when they make the actual incision.  They called us in the waiting room at 9:02am to let us know they had made the incision and the heart repair was underway.  After that point, they gave us hourly updates as the surgery progressed.

About 11:30am, I received the final update that she was off the heart/lung machine and they were ready to close her up.  Her cartiologist came first and gave us a report that the surgery had gone "picture perfect," that she had done amazingly well and when they opened her up it was exactly what the doctors expected to see.

Her surgeon, Dr. Burke came next and took us into a consultation room to discuss the surgery.  In so many words he told us the surgery went very well, but its obvious as the liable party they have been trained to be VERY CAREFUL what they say for liability purposes.  We asked if this would be her only surgery and although you could tell he wanted to say "yes" his liability insurance didn't allow him to....he said the fix went very well but there was no guaranteeHe gave us the anatomical explanation, most of which I understood having been dealing with this for nearly a year now.


For those of you who actually understand this stuff (AARON), I'm going to put a disclaimer as I'm reporting what I remember hearing and if its not anatomically correct you are free to call me up to correct my ignorance.  

When the surgeon got in, the first thing they fixed was the valve that was a single valve needing to be split in two.  They called it a "cleft" and the surgeon said it was actually longer than they thought.  He put in 4 stitches to close the cleft and split the valve.
He said Aspen likely had a full AVSD early on including a small hole in the 2 bottom chambers (Ventricles), but this flap from the cleft had folded over the likely hole and created a "shunting affect" not allowing blood to pass through.  He said because it was covered, that hole closed on its own.
I had wondered about this because when we had done the 2nd ECHO a month before she was born (an ultrasound machine that measures many things about the heart including blood flow which reveals holes), Dr. Polchalski mentioned there was very, very faint blood in the 2 ventricles and although there didn't appear to be a hole there, they couldn't rule it out. It all made sense now.
Next, they repaired the hole in the between the 2 Atria with part of the sheath surrounding the heart.  All of us have a membrane surrounding the heart that must be partially removed to get to the heart with Open Heart Surgery.  The beauty of it is they were able to use the small section of sheath they removed to patch the hole, which means no foreign objects was required to close off the hole (sorry Aaron, Goretex patches are great, but this is still the better option in my opinion!) .
Dr. Burke also mentioned her ductus arteriosis had not completely closed when she was born and they clamped that off and corrected that as well (if you recall from when she was born that bypasses the Aorta while a fetus and closes once they are born and using their own heart vs mommies).

We got to see her about noon and she actually looked better than I thought she would.  She had lots of tubes and chords, but was pink and overall looked great having just barely come from Open Heart Surgery.  Thusfar she has surpassed all her expectations of recovery! Since she was doing well and I couldn't breastfeed that night I decided to go home and get a good nights sleep...sweet dreams now that my baby was doing so well! They removed the breathing tube around 6pm yesterday which they didn't expect to do till this morning.  She drank 4 oz of my breastmilk last night from a BOTTLE (yes, I repeat, from a bottle something she has NEVER done).  The Nurse said when they get hungry enough its amazing what they will do.  She is doing amazingly well accredited to the faith and prayers of so many wonderful people like you! Thx for your prayers for our sweet little angel!

Arriving At Primary Childrens at 6am for Surgery Sept 27, 2010

Mommy & Daddy woke me up at 5:30am!  I was dead tired...didn't even wake up for mommy to change my diaper.  But when daddy put me in my carseat to get in the car I opened my big blue eyes and flashed a great big smile to let Mommy & Daddy know everything was going to be alright.  Then I fell right back to sleep...

Waiting outside same day registration with daddy.  Mommy couldn't believe all the kids in the tiny little registration room at 6am.  We decided to wait outside by the elevators so I didn't get exposed to germies from all the little kids....I wanted it quiet to sleep anyways.

 Getting my vitals checked by the nurse before surgery while waiting for my Surgeon, Dr. Burke, to come talk to Mommy and Daddy to explain how they were gonna fix my heart.

 Hanging with Daddy before they got me ready for surgery...wow, I'm tired!  I haven't been awake this early in I don't know how long!

 Mommy and Nana Tana holding me in my hospital PJs that DROWNED me...only things that fit were my diaper and little pink footies.

Playing with my favorite dolly while mommy & daddy met and asked my Anesthesiologist, Dr. Clarke, lots of questions about the medicine they would give me in surgery to make me fall asleep so I would be asleep the whole time and not remember anything.

On the Eve of Surgery

One of these days this'll be my fav treat...for now the cold feels good on my gums!

Sweet Slumber...mommy wishes she could sleep like this on the eve of my Heart Surgery

Falling Asleep in Daddy's arms.  Daddy & I had a long talk about surgery tomorrow and how there gonna fix my heart so I'll be all better.  I was a hungry girl the day before....I ate a whole jar of applesauce for dinner!  Mommy says that's the first time I've eaten that much at one time ever!

Mommy could only breastfeed me till 3:30am.  I was hungry at 2:30am so I woke her up!  First time I woke up since in the middle of the night since I was 2 weeks old! My mommy thinks I knew what was coming tomorrow so I wanted to make sure I stored up before they put me on an IV for a few days.

My Daddy, Grandpa Todd, Uncle Aaron, and John, the 2nd Counselor of our ward (who loves the Simpsons sitcom, claims there's always a morale...even used examples in his sunday school classes...cool!) , all came to give me a blessing I would do good with surgery tomorrow.  They gave mommy a blessing too.

Hello All-


I just wanted to keep all of you in the loop with Aspen's upcoming surgery. Of course her impatient mother called Primaries & made them expedite the pre-authorization...that way we kind find out what's on our dime. The surgery will be performed Monday SEPTEMBER 27th. She goes in for pre-surgery lab work at 9:30am Sunday the day before. I spoke to the coordinator at Primaries Cardiothoracic and found out that the primary surgeon will be Phillip T. Burch MD with the 2nd surgeon Peter C. Kouretas, MD PhD. Attached is a link to tell you about the surgeons...I'm sure they are amazing at what they do...people come from all over the country to have the surgeons at Primaries do surgeries.
http://www.pedcardiology.utah.edu/team/doctors/surgeons/Kouretas.html

They'll let me know what time to be at the hospital Monday when I take Aspen in for the Pre-op blood work on Sunday. They will also do what they call a TEE or transesophaeal echocardiogram which used ultrasound technology to access the condition of the heart. It differs from the ECHOs she's had previously except with a TEE the transducer is guided into her esophogus until it rests directly behind the heart.. From this vantage point, the sound waves do not have to pass through the skin, muscle, or bone allowing very detailed images for the surgeons.
Information the TEE provides is

-the size/struction of heart chambers & any structural problems (like Aspen's hole between the 2 atria chambers)
-the amount of blood the heart can pump
-the structure and movement of the heart values (or condition of the artificial inplated valve)
-conditions of blood vessels
-presence of blood clots or tumors in the heart

Potential risks is that she could have a reaction to sedatives, the transducer going down her espophagus could cause nausea or some discomfort but the majority of people don't experience discomfort, & though VERY RARE there is always a chance the transducer could damage the esophagus causing infection or bleeding.

As far as the day of surgery, it'll be morning I'm sure...but I'll let you know the schedule when I get it. They said the surgery from when they take her into surgery with prep and the surgery itself will take about 4-5 hours. We will be able to meet the surgeons the morning of the surgery and they will of course give us updates. Her cartiologist, Dr. Polchalski, says she is very healthy and it makes a world of difference that I've exclusively breast fed her....part of that was her stubborness in not taking a bottle! They expect her to be in intensive care for 1-2 weeks.

Anyway, sorry this is a little long...I just want to keep all of you in the know. My parents and my ward are doing ward fasts the Sunday before & I appreciate all of your thoughts and prayers on Aspen's behalf.

Nicole, Karsten & Baby Aspen