Jinx

It's almost the New Year.

I've always been a bit superstitious. It makes me uncomfortable to say that 2011 will be a year sans surgery or hospitals. I don't want to jinx ourselves.

Dr. Stock told us we could take 2011 off and just enjoy. So, that is the plan. No hospitals, no surgeries, just 'normalcy.'

To end the year, Caleb and I are (for the first time) leaving Zoe overnight with Grandma and Grandpa. We are taking Emerson to the polar express up north. Our trip is still 2 days away, but I'm already growing anxious at leaving Zoe. She will be fine, I know. And yet.

The holiday required some tweaking this year, as Zoe is on lockdown for flu/rsv season. We took her to my parent's house Christmas morning and Caleb stayed home with her in the afternoon while I took Emmy to her great-grandparent's house for our traditional holiday festivities. The girls are extremely fortunate to have their great-grandparents around.

(Great-grandma and grandpa Muenich)

(Great-grandma Olney)

The girls were absolutely adorable in their holiday dresses. Granted, Zoe didn't get to show hers off, but I couldn't let her sit around in her Christmas pjs all day.

Speaking of sitting... Zoe is becoming a champ. The day after Christmas, Zoe displayed her skills for her Aunt Stephie and Uncle Paul - sitting up for nearly 15 minutes unassisted. This is very big news, as we were anticipating some developmental delays due to all of her time lying in a hospital crib.

Zoe seems to be one-step ahead of her older sister. First, with sitting and now with teething. For Christmas, Zoe got her bottom two teeth. Emmy waited until her first birthday to cut hers. At this rate, Zoe will be running circles around Emmy in no time.

Thank you for sharing in our 2010. It's been quite an eventful year. We look forward to keeping ya'll apprised of Zoe's accomplishments in 2011.

Jinx or no jinx, Happy New Year! (as I knock on wood...)

Merry Christmas

Best.Christmas.Ever.

Angels Among Us

I never gave Angels much thought before May of this year. But this holiday season, I have Angels on my mind nearly 24/7. I want to believe they are here with us, keeping watch over us; letting their loved ones feel their presence during these difficult weeks.

The first angel I truly "felt" was that of a precious baby, Gwenyth. I met Gwenyth's mom before traveling to Philadelphia. She, like I, delivered her baby at CHOP. She, like I, feared for her unborn child's life. She, like I, had so much hope for the future. She, like I, never believed "it" could happen to one of our own. Two days after Zoe was born, I learned of Gwenyth's passing. I will never forget that moment - the moment when the reality of my life slapped me in the face.

Of the four women I met and fell in love with at CHOP, two have lost their babies. I cannot fathom what the holidays hold for them this year.

My Christmas tree this year, and for all the years to come, will be adorned with their angels - Gwenyth, Mia and Emma.




These three precious children, along with my Zoe, are a constant reminder that each day is a gift. Each day I am given with Zoe is my Christmas, the very best gift of all.

Much love to Laura, Jenn, Christina and the countless others whose hearts are broken this holiday without their babies. Oh, how I wish life could be different.

Please take a moment to remember these angels among us and their families during this holiday season.

Massages and Make-up

Those of you who see my Facebook status regularly know that Emerson learned about massages yesterday. She witnessed me massaging my own back. She asked "what's wrong, mum?" I told her that my back hurt and that I "needed a massage." A few minutes later, she was rubbing her back, saying "we need massages, my back hurts."

Well that was yesterday...

Today, I went into work. After getting myself ready, I gave Zoe her meds, made breakfast for Emerson and pulled my pumping parts together for a day at the office. I should've known Emerson was up to no good after several minutes of silence. I'd left her in my bathroom and told her I was going to make her a bagel.

A few minutes later, after far too much down time, I summoned her to the kitchen.

Emmy came trotting down the hallway, head held high.

"Honey, what is on your face?"

"Make-up, mum! Make-up!"



Upon closer look, it appears Emmy mistook mascara for lipgloss.

Great, massages and make-up. I've created a monster!

Show-off

That's my girl!

Zoe had a cardiology appointment today. Not just any cardiology appointment, but the full-spectrum, 2 and a half hour cardiology appointment. First, while in the waiting room, I filled out the routine paperwork about how she's been since our last visit. Next, we are escorted back to "Room 4" and Zoe gets stripped down. Today, her blood pressure was taken first (good results) and sats checked (93%) followed by an EKG (completely normal.) Zoe was measured and weighed (26 inches and 14 lbs 13 ounces or 6.72 kg for you heart moms.)

Then, the dreaded echocardiogram. This time, we came prepared. Bottle, check. Stuffed bunny teether, check. Light up spinning ball wand, check. Given the horrific screaming fit Zoe displayed 6 weeks ago, the tech asked that I hold Zoe cradled in my arms while she performed the echo. She fussed at first, but we got through utilizing all three of our props. After the echo, we returned to "Room 4," only to be summoned back because "Dr. Stock wants another picture." I looked at Caleb and said, "Oh great, that can't be a good thing."

Turns out, the tech needed a better picture of the descending aorta, since Zoe's had issues with it being slightly narrowed. Dr. Stock walked into the echo room to observe. Zoe was irritated that she was back in the dimly lit room and threw a small fit. With a series of finger snaps and a little ditty of "just a little distraction" by Dr. Stock, Zoe pepped up. Knowing my personality, Dr. Stock, before we left the echo room said, "her function looks better!" We walked back to "Room 4" and on the way, Dr. Stock looked at her vitals for the day. "93!?, Really?" I said, "yep, she's consistently 92 at home." His response, "She's our little rockstar!"

We sat and discussed Zoe's echo which showed very good function. So good, in fact, that he was contemplating taking her off Enalapril (her heart medication) and leaving her with just aspirin. After a short discussion, we decided to not mess with what seems to be working. With HLHS kids these days, the art of medicine still has much to be perfected. Cardiologists are figuring out the best treatment and medication as medicine evolves with Zoe's condition. All in all, Dr. Stock was very pleased with how she looked both clinically and radiographically. She's still on the growth chart which is a feat in and of itself - a little over 10%.

I then asked the big question, prefaced by, "ok, I know I am jumping like 10 steps ahead here..." and was interrupted with, "you're not going to ask about her next surgery, are you?" Geez, he knows me so well! CHOP doctors, with textbook hypoplasts, generally perform the Fontan around 18-24 months of age. Luckily, Dr. Spray and many of the CHOP physicians and nurses will be in Scottsdale, Arizona in February to present at the annual update for pediatric cardiology and CHDs. Dr. Stock will talk to them about CHOP's ideal time frame for the Fontan.

At the end of Zoe's appointment, the four of us were all smiles (Me, Caleb, Dr. Stock and Zoe.) We won't be seeing Dr. Stock again until February 11th.

After arriving home, Zoe continued to show off and scarfed an entire jar of pears. She usually takes 1/2 a jar...if we're lucky.

Today was a great day, full of good news and positive energy. It always amazes me how after a cardiology appointment, I realize how much stress and anxiety I have leading up to and during the appointment. On the way home, I felt like I could breathe easier, literally. I allowed myself some happy tears and told my show-off how very proud of her I am. She was sound asleep, but I still told her.

365 Days Ago

December 9th is our anniversary - the anniversary of the day we learned of Zoe's congenital heart defect. How ignorant was I, just 365 days ago?

Caleb and I walked into the Fetal Women's Center in Scottsdale, Arizona for a Level 2 ultrasound. I remember thinking, 'how great is medical technology these days that we can, at 19 weeks, be given the sex of our baby with 95% accuracy?' As the ultrasound tech took her sweet time, I grew impatient to find out if we were having a boy or girl. I was certain it was a boy. When she asked if we had a girl or boy already at home, I told her we had a girl. She said, "Well, she is going to have a little sister." Shocked, me.

How ignorant was I, just 365 days ago?

The shock I felt in that moment cannot even compare to what I would learn in the next hour. Even when the ultrasound tech told us that she was "going to spend some time taking pictures of the heart," I did not realize the blow we were about to endure. Only when she left to get the doctor, and I saw the look on his face as he entered the room, did my heart sink. Only to sink even further when hearing his first words. "I have some bad news for you today." As I type these words, the actual scene of that moment re-plays in my mind, as if I was a film director and I could say "cut" and change the events that occurred next.

It was then, at 4:00 p.m. in the afternoon, 365 days ago, that we first heard, "there is something wrong with the baby's heart." Laying on the ultrasound table, I turned my head towards Caleb, with gross fear in my eyes. I grabbed his hand and in the blink of an eye, my world stopped turning.

The next scene I recall is Caleb and I walking down a hallway in complete silence. We were in shock. We were ushered into a consultation room to speak with the doctor, in more detail, about our daughter's defective heart. My mind was racing. What did I do? How could this happen? Am I going to lose my baby girl? We waited for what seemed like forever until the doctor walked in. He had a large medical textbook to explain what our daughter's heart looked like and how it was defective. He also talked about our options. The two options I heard, in a nutshell, were life or death.

Unfortunately, we'd drove to the appointment in separate cars, after work. Now, we both had to drive home, in a daze, weighed down with this knowledge. I called my parents who were at home watching Emerson. My dad answered the phone. All I could say was, "we got bad news," then I burst into tears. The remainder of the drive, I sat behind the wheel, in auto-pilot. The evening of December 9, 2009 is a complete blur.

The next morning, we had our first of countless fetal echocardiograms and met with Dr. John Stock. Dr. Stock reiterated our options, with cautious optimism for cardiac reconstruction. No parent should have to make the list I had to prepare in early December, 2009 - a pros and cons list to help us decide whether to terminate our pregnancy or fight (and suffer) for, and with, our little girl.

Even while discussing the list, we reached the same decision, in our hearts. From that moment on, Caleb and I chose life. At that point in our marriage, we'd done a lot of fighting (literally and figureatively) and we always came out on top. If we had the chance to fight, we knew we could and would give it our all.

And the whirlwind began...

To say that a lot has happened in the last 365 would be a gross understatement. So much has changed.

365 days ago, we began this battle. For 153 days, I fought for Zoe; For 211 days, I've fought with Zoe. I imagine the days ahead, in my mind, and HOPE for countless days that she will be here with me, fighting. I imagine, the movie in my mind, a strong, courageous and beautiful little girl raising awareness for her defect; fighting not only for herself, but for the countless babies to come who will face this same battle. Someday, I imagine, medicine will evolve with awareness and research and we'll no longer have to fight this battle. No more mothers will have to make the choice of life or death when it comes to severe congenital heart defects.

Tonight, the evening before my life came to an abrupt halt 365 days ago, I rocked my baby girl to sleep, reconstructed heart and all. As I rocked her and thought about December 9, 2009, Zoe reached up and gently placed her hand on my cheek. Her gentle touch brought me to tears. I'd like to think she was thanking me for giving her the opportunity to fight. I kissed her forehead in return as she fell asleep, thanking her for the countless and undescribeable ways her life has touched mine.

From this moment, 365 days ago


to today, December 9, 2010, and always...


Thank you, Zoe Madison.

Music is Awesome!

Our excitement for today's surprise began in May, when we were in Philadelphia. It was Emmy's birthday and we purchased her Yo Gabba Gabba Live tickets for the Phoenix show. Today was Emmy's big day; she got to meet her favorite characters. For lunch, she wanted macaroni and cheese so we headed to Red Robin. After lunch we cruised downtown for the big show. I'd told her she was going to meet Brobee, Toodie, Muno, Foofa, Plex and DJ Lance Rock earlier in the day, but it didn't quite click until she saw their trailer.

Daddy went all out for the big surprise and got Emmy front row seats and backstage, VIP treatment.

(Waiting for the show to start...)

Emerson LOVED being front and center. She danced and sang to her favorite songs (so did mommy.) Mommy's favorite is "Balloons."

During the show, Emmy got a hug from DJ Lance who came down to meet some of the kiddos.

She was in shock meeting DJ Lance, but that was nothing compared to what happened next! Biz Markie (a regular on Yo Gabba Gabba) came out on stage to sing his "Biz's Beat of the Day." Emmy was one of a few lucky kids to get to sit on Biz's lap and beatbox. Granted, Emmy didn't do so hot, but mommy snapped some great photos!

Emmy wore her DJ Lance glasses and Foofa headband the entire show. I haven't seen her this excited in awhile. It was so wonderful to get her out of the house, since she hasn't been able to do much with us since Zoe's birth and surgeries.

After the show, we went backstage for a photo with the cast. Biz made a second appearance. This time, daddy jumped in with Emmy. I think Daddy was way more excited to meet Biz than Emerson. In fact, I'm sure of it - just look at his face.

Emmy kicked balloons and danced like a mad woman while waiting in line to meet the cast. I was surprised, when it was our turn, to see her book it towards Toodee. She put her arms up in the air, asking Toodee to pick her up. Toodee gave her two high fives instead. Emmy couldn't believe she was meeting them all. We got a family photo, but will have to post it once we receive it. For now, enjoy Emmy giving Plex a hug. (It was dark and no flash allowed...)

Emmy had so much fun at the show and after party. This smile pretty much sums it up.

Mommy had fun too!

By the end of the backstage party, Emmy was pooped.

Thanks Grandma and Grandpa for watching Zoe. She obviously had fun too and was tuckered out by the time we got home.