A Hearty Performance

Today, Zoe had a follow up cardiology appointment. Our nerves were on edge for this visit. As you recall, nearly two weeks ago, the echocardiogram revealed decreased heart function. As a result, after Zoe's Arizona and Philadelphia cardiologists put their heads together, Zoe was prescribed Digoxin, a medicine used to treat heart failure.

So, today's plan included a follow up echo to evaluate if the Digoxin improved the heart function. After an EKG, a dozen attempts to obtain blood pressure, and the echo, we learned from Dr. Stock that Zoe's heart function was indeed improved. In fact, he said it appears to be within normal range. Way to go Zoe! Or way to go Digoxin! Either way, today's visit yielded only good news. What a nice change.

Zoe continues to eat very well, which means she continues to gain weight. Our little chunker is already a tad over nine and a half pounds. The Glenn surgery will be scheduled for sometime in mid-September. The goal weight for that surgery is eleven pounds. Zoe is well on her way to exceeding that goal.

All in all, Zoe is kicking butt. Please continue, however, to pray and send good thoughts for an uneventful couple months, as we approach the Glenn.

Still Smiling

We're keeping our chins up (no, that is not a pot shot at Zoe's double chin.)

Her double chin is a good thing.

Here are some of our smiling faces...



(Mommy found Emmy "pumping" on the kitchen floor.)

And to keep the smiles going, Zoe had a spa day on Monday.

A completely relaxed Zoe emerged.

(Emmy seemed a bit jealous of Zoe's spa day.)

We hope ya'all are keeping your chins up and still smiling!

Love,
The Lihns

Updates

Unfortunately, late yesterday afternoon, Caleb received a phone call from the skilled nursing facility where Jackie was transferred on Thursday. Jackie's nurse informed Caleb that his mom was once again non-responsive. Just earlier that morning she was up walking with assistance and conversing. Caleb requested that Jackie be taken to St. Joseph's Hospital (a request previously made and denied by Banner Thunderbird.) For those of you who do not live in Arizona, St. Josephs' Barrow Neurological Institute is top ranked in the country - sort of like the CHOP of the southwest for neurological issues.

Caleb drove to St. Joe's and spoke with ER nurses and doctors. Jackie underwent a series of tests in the ER and then was admitted to the neurotelemetry unit. The neurologists at Barrows hope to give us an answer - currently they are speculating some sort of neurodegenerative disease. We hope that in the next few days we'll know what is causing her rapidly declining health.

Zoe has taken two doses of her Digoxin and appears to be tolerating it well. She's been sleeping a lot today - so I think she's having another growth spurt.

Tonight, Caleb, Emerson and I are going out (yes, out of the house) to see fireworks. I'm so excited! Thanks to my parents for offering to hang out with Zoe while we get some Emmy time.

As always, we'll keep you posted on the Lihns and our rapid, turbulant rollercoaster ride.

Game Plan

We have one as of this morning. Zoe will start on an alternative medication, Digoxin, in hopes that it will help her heart function. If it does not improve on the Digoxin, the next step is to admit her into the hospital (likely Phoenix Children's) and administer Captopril. The hospitalization is necessary to monitor her blood pressure while administering and balancing the Captopril. Mommy REALLY, REALLY does not want Zoe hospitalized, so let's all pray that the Digoxin does the trick. According to her cardiologists, some babies respond well to Digoxin, others do not. Some respond well to Captopril, others do not. With heart babes, its really a juggling act - as we know all too well.

I am glad we have a game plan in place, which will start this evening. We will know on July 14th (Zoe's next appointment and ECHO) if her heart function improves. We have a week and a half to pray people, so let's make it happen!

Happy 4th from the Lihns!

Emotionally Spent

With all that is going on in our world, the last thing we wanted to hear today was bad news. Well, this morning at Zoe's cardiology appointment, we received a rather unpleasant report. Zoe's ECHO revealed that her heart function has decreased, mildly. Not sure the "mild" decrease makes me feel any better. Her cardiologist cannot say for certain why the decrease in function, but that it's clearly discernible when compared to her last ECHO in Philadelphia. It could be that her heart is overloaded from the first surgery and after her second surgery, the heart will offload and function will resume as normal. It also could be that her muscle function is compromised, meaning the Glenn will not improve the function and she will need a heart transplant. There are a few other possibilities in between, but an ECHO will not reveal the cause, just the result. A heart cath may be informative, but with Zoe's clot and track record, a catheterization, at this time, is not worth the risk. So, we wait and see...

I ask for prayers, prayers and more prayers that Zoe's decreased function is not an indicator of muscle function and can be reversed with the Glenn, or better yet, by her next ECHO which is scheduled for July 14th.

A medication called Captopril can be used to assist in increasing heart function, however, Zoe's blood pressure sits on the lower side of normal (as does nearly all females in our family) and since Captopril can lower BP, he does not want to risk further complications - particularly given that it is a 3 day holiday weekend if some emergent situation were to arise. A call and email have been placed to our cardiologist in Philadelphia to relay the information and prepare a game plan.

As we sit currently, Zoe will likely have her Glenn surgery closer to the 3 month mark, the early side of the surgery range, particularly given the latest ECHO results.

Mommy's head hurts from stress and emotion - as does Daddy's.

Also, please continue to keep Caleb's mom, Jackie, in your prayers. She is now in a skilled nursing facility, but struggles daily with dementia. Today when Caleb visited her she was confused, didn't know where she was, and was generally out of it. Just over a month ago she lived independently, drove, and visited us while in Phildelphia. Today, her body has left her unable to do any of those things. Doctors can't say for sure, but because these symptoms have been present for the past month or so, it's likely that this will be a struggle for the remainder of her life. Please pray that Jackie can recover as much ability to independently function as possible. She will probably never live alone again, but we hope that her quality of life can significantly improve.

Please keep the Lihns in your thoughts and prayers.

Thank you,
Stacey

Approaching Two Months

Zoe is fast-approaching a big milestone - she'll be 2 months old on July 11, 2010. To many of you, 2 months may not seem like a "big milestone", but for a heart baby, it is huge. We are halfway to her second open heart surgery, the Glenn.

The Glenn:

This second operation will replace Zoe's BT shunt with another connection (the Glenn shunt) to the pulmonary artery. In this operation, the Blalock-Taussig shunt is removed, and the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) is connected to the right pulmonary artery. Blood from the head and arms passively flows into the pulmonary artery and proceeds to the lungs to receive oxygen. However, oxygen-poor (blue) blood returning to the heart from the lower body through the inferior vena cava will still mix with oxygen-rich (red) blood in the left heart and travel to the body, so Zoe will likely remain mildly cyanotic. The Glenn operation also helps to create some of the connections necessary for Zoe's final operation, the Fontan procedure (which occurs anywhere between age 2 and 3.)

I know what you're thinking. Oh my God, how is this possible? Each time I read about these three open-heart surgeries, I ask myself the same question. It is amazing how far medicine has come. For this reason, we've stored Zoe's cord blood and cord tissue, hoping that medicine will rapidly advance. Who knows, perhaps one day researchers will figure out a way to rebuild an artificial heart with stem cells and Zoe can have her own, rebuilt heart. A heart mom certainly can hope!

So, our precious little one goes for her ECHO tomorrow morning with Dr. Stock. I am very nervous about the ECHO. In Philadelphia, each time we underwent a test, or another procedure, some complication arose or became apparent. I would love to hear some good news tomorrow. Zoe's "numbers" are good, she continues to eat well and is gaining weight but the ultimate looking glass is the ECHO.

Emerson left this afternoon and is heading up north with my parents. They'll spend a few days at their cabin in Strawberry. I'm thankful for this, as Ms. Em has been locked in the house for 3 days. She's been such a trooper adjusting to our new bubble life.

Overall, the girls are doing well and are growing more and more used to each other. They're quickly become sisters - check Zoe out as she kicks her big sister in the butt as they chillax during an episode of Yo Gabba Gabba.



I have a very strong feeling that Ms. Zoe is shaping up to be much like her mommy - a stubborn, strong-willed fighter. This is not a bad thing people, particularly for a heart babe. At times she gives me a look, a mischevious look I know all too well. I guess the karma train is rearing up to smack me for the stress I put my parents through.

Update on Jackie:

Caleb's mom was discharged from the hospital today and is now back in a skilled nursing facility (a different one than before) where she will undergo therapy. She still has bouts of confusion and we're afraid that her dementia is here to stay. Some days are better than others. We hope that over the next several weeks, the therapy will build self-confidence and physical strength. Once we know her maximum abilities, we'll assess her next move (literally.)

And, the moment you've all been waiting for...some pics of our little ladies.


Zoe's new bath sling - she's not a huge fan of the bathing just yet.

Emerson's first swim in the pool, this summer, with Dad.

And, I saved the best for last.


Zoe's big smile (and big cheeks!) And, yes heart moms, that is a CHOP gown which I'm sure we've paid for a bizillion fold by now!

A Glimpse into Our World

I wanted to share the details for tonight's airing of Boston Med on ABC. They will be following the story of a couple whose baby is prenatally diagnosed with HLHS and delivered at Boston Children's Hospital - a top ranked children's hospital. We considered Boston Children's for Zoe, but after meeting with Dr. Spray at CHOP, felt Spray was our man.

Please consider watching tonight's episode and get a glimpse into our world and the lives of our large CHD family.

http://bostonmed.abcnews.go.com/patient-profiles/renee-peerless