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

Hectic Times

A complete whirlwind, or more accurately, a complete tornado is how I would describe the last week. Caleb's mom took a turn for the worse about five days ago. She suffered what we believe to be a significant stroke (even though the CT scan doesn't show any evidence of such.) Before you question the testing, she cannot have an MRI due to the metal aneurysm clips in her head.

The tornado began on Tuesday evening. Caleb left work and headed to visit his mom at the care center. When he arrived, Jackie sat comatose in her bed, staring at the ceiling with her mouth gaped open. She could not talk. She could not close her mouth. She could not fixate on anything and stared into nothing. Caleb attempted to converse with her and get her to drink to no avail. Realizing the seriousness of the situation, he immediately called for her nurse.

I won't get into our narrative of the care she received or the questions about how long she'd sat in her bed in this state with no one paying attention - or ignoring her condition.

After Caleb's intervention, an ambulance arrived and transported Jackie to the emergency room. My parents (life-savers once again) came over to watch Emmy and Zoe, while I left and met Caleb at the hospital.

When I arrived, I was in total shock at Jackie's condition. She sat propped up in the hospital bed, completely incoherent. Caleb and I remained at the hospital into the early morning hours. Once she was admitted and settled in, we returned home. Needless to say, we were exhausted and stressed.

Over the next few days, Caleb stayed bedside and directed Jackie's physicians in order to establish her "baseline" physical abilities and behaviors. Her co-morbidities are quite overwhelming to anyone who reviews her chart. Caleb is an only child and Jackie's medical power of attorney. Since she cannot talk and is thoroughly confused when she does, he is her lifeline. Caleb and I will need to find a skilled nursing facility and ultimately a group home for Jackie. Her current status is tenuous, at best. She is beginning to talk once again, but remains confused, demented, and struggles with eating and drinking. She will need to undergo physical, occupational and speech therapy - all of which will likely not bring her back to "baseline." The past several days have been more than challenging for us. And, unfortunately, compassion does not come easily to all that surround us and additional stress has been placed on our family. Please pray that Jackie's health improves and that we can work through the challenges and maze that we are mired in right now and that we come out stronger and better on the other side.

At home, our stress level is understandably heightened. Both Emerson and Zoe are doing well. Zoe continues to get a thumbs up on her daily "numbers" - pulse ox, heart rate, feeding volumes and weight. Her next cardiology visit is this Friday, with an ECHO. I hope and pray that there is no further narrowing of her shunt and we continue to be on schedule for her Glenn surgery in mid to late August (assuming she continues to steadily gain good weight.)

This afternoon, Emerson helped mommy put together a storage unit for Zoe's stuff - as she requires more items than a typical baby. Emmy was quite proud of herself.

(High fives for a job well done! And, no, she's not wearing any pants.)

Caleb got out of the house with Emmy today for a dinner date with Grandma and Grandpa and some friends, Cliff and Karen, who helped us out tremendously while we were all in Philadelphia. Emmy dressed in her new outfit and mom got a shot of her during her get ready process. She is such a ham and makes me laugh constantly.


To end on a positive note, and bring a smile to your face (as it did mine), I thought I'd share Emerson's words of wisdom for the day:

"Don't bite your friends."

Thanks Yo Gabba Gabba...

A Quick Update

Even though we didn't leave the house, we had a great Father's Day. Zoe enjoyed hanging with Dad and Tummy Time.

Grandma and Grandpa Muenich came to pick up Emerson and took her to see the Greats and to visit Grandma Jackie. When they returned, we took some dads and daughters pics. Emerson refused to cooperate. As usual, she just wanted to sing, dance and goof around with Papa.

Yesterday, I took Zoe to the doctor to get her blood drawn once again. This time, I was really hoping she'd cooperate, but no such luck. It took 3 pokes to get her to give up 3 mL. She no longer calms with sugar water and chose to scream the entire time. The stress wore both of us out!


Things are going as well as expected at home. Zoe continues to gain weight. She eclipsed 8 pounds yesterday. We're pushing her to continue gaining and growing - the goal is lung maturation for her Stage II surgery. She is finally used to mommy's poking and prodding all day long. She really is a trooper!

All of us Lihns continue to be amazed with Zoe and are her biggest fans. Thanks for continuing to cheer us on each and every day.

Happy Father's Day

It's only when you grow up and step back from him - or leave him for your own home - it's only then that you can measure his greatness and fully appreciate it.
-- Margaret Truman

Wishing a Happy Father's Day to my Dad and Husband, two men that would sacrifice anything for their daughters. I am a lucky daughter and wife!

(Father's Day, 2009)

"Breathe"

Just wanted to share my new favorite song. Ryan Star. Ever heard of him? I can tell by your face, No.

Great lyrics...

http://link.brightcove.com/services/player/bcpid28811474001?bclid=25736459001&bctid=86070805001