Miracles

They do happen, right? Well, we need one.

Our, and I say our, because she is part of our family, Emma needs a MIRACLE.

I received a call from Emma's mom, Christina, last night. She was on her way to CHOP at midnight after receiving a call about Emma's declining health.

For those of you new to my blog, our family met Christina and Emma at CHOP before Zoe was born. Christina and Emma have been there from the beginning.

(CHOP Heart Moms, Christina is on my 39.5 weeks pregnant left.)

Emma is a fighter, but this morning her mom let us know that doctors do not expect her to survive the day. They are removing her from the ventilator and letting Christina hold and comfort her until she passes.

Please join me in sending love and light to Christina, Emma and Emma's siblings, Jazzy and Ryan.

Emma has lived most of her days (365-plus) at CHOP. She is a fellow HLHS child who has fought this CHD battle for months. She's been awaiting her new heart, but was taken off the transplant list due to her ailing health. Last night, her heart rate skyrocketed to 230 and blood pressure dropped.

Please take a moment today to say a prayer, meditate and surround this family with love.

We love you Emma Grace.

(Emma, always smiling in the halls of CHOP.)

Love Me Some Daughters

My girls are the best. I know, everyone says that, but mine really are :)

They've endured a lot this year and nothing fazes them. Oh how Woody Wolfe's album title rings true, "Become As a Child."

Just look at these two...

(Emmy's new tent (aka cave) that keeps her quite busy.)

(It even has a tube to crawl through where apparently the "monsters" live.)

(Zoe's shirt says it all...)

(Emmy picked out her costume this year. Brobee!)

(Yes, Curtis, the Cardinals beat your Saints!)

(Hanging out in mom and dad's bed on a Sunday morning.)

(No caption required...)

Just a few precious moments I wanted to share with our lovelies. Hope everyone is well. We certainly are!

Love,

The Lihns

Beyond Grateful

Two very important people entered our lives in December of 2009. They've offered knowledge, advice, treatment and hope. They've worked, in tandem, with the same goal in mind - Zoe's health and well-being. We'd like to take this opportunity to thank them, publicly.

Dr. Stock,

You've been amazing. Even when I pry and plead with you to tell me that we're "in the clear," knowing this cannot be done with certainty, you always find a way to pacify me. You're good like that. You've been up-front, honest and provided comfort from the beginning - the beginning being the day after I learned that my sweet baby (who was then unnamed) may not survive. You gave us our first glimpse of hope. I can't thank you enough for that; for granting us that hope which led to our ultimate decision to bring Ms. Zoe into this world. You've followed her very closely and caught hiccups along the way - potentially life-threatening hiccups. Just because we are post-Hemi Fontan, don't think the obnoxious texting will cease. We may be out of the deep woods, but the forest still has trees.


Dr. Szwast,

You, without question, didn't hesitate to give us hope. Each trip to Philadelphia raised our confidence levels in our decision to travel from Arizona. You made me wear oxygen masks and ran funny tests. You called Zoe your "model" before she was even born. You kept a close eye (ok, ear) on her while she was in Arizona. During her hospitalizations, you were always there to check in and make sure things were going as planned. If not, you were on top of it. You answered my emails, even taking into account our 3-hour time difference. And yes, on weekends too. You worried, but didn't let us know just how much until we were "in the clear." I was happy that you were the last person we saw on our way out of CHOP - especially given your last minute suture removal. We will miss seeing you and chatting so often, but hope we don't have to see you for some time.



Somehow, Drs. Stock and Szwast, "thank you" doesn't seem enough. I'm not sure I could ever fully express my appreciation for all you've done. I promise to take care of our little girl and love her forever.

With deepest gratitude,
Stacey

And, we're weaning...

We headed off to Zoe's cardiology appointment early this morning. I told friends and family that I was not accepting anything but good news. Apparently, I should do that more often.

Zoe's vitals were great today. Her oxygen saturations steady at 90%. Just perfect! Dr. Stock was very pleased with how Zoe looked. She even gave him a smile today. Emerson joined us today and did not like seeing Zoe AND mommy on the hospital bed. She insisted she join us during Zoe's echo.



Zoe cooperated, most of the time. As you can see, she's trying to boot me in the head. Regardless, the tech got good pictures. Zoe's echo demonstrated normal heart function (with the already known "on the small side" left pulmonary artery and descending aorta.) We remain positive that both the artery and aorta will grow along with her normal development.

During our consult, we discussed weaning Zoe off of her diuretics in the next week and then off of the Digoxin. Let's hope the weaning is successful. If so, she'll require only 3 meds (Aspirin, Enalipril and Prevacid.)

Zoe weighed in today at 12.54 pounds and will begin eating cereal next week. Wow, she's already growing up so fast! At 12.54 pounds, Zoe is in the 10th percentile for weight - a huge feat for a heart baby! Zoe's appointment went so well that we're going to start weaning her cardiology visits. Next appointment is in 4 weeks, then we'll go to 6, then 8!

I am so happy that we received good news today. It has been a very trying and emotional week. The CHD community suffered tremendously, loosing 12 children around the country to this horrible disease. This has got to stop. Please help = Raise awareness. Tell one person about CHDs and its effect on thousands of children each year.

Without awareness, Congenital Heart Defects will go on as a silent killer. With awareness comes funding. With funding comes research. With research comes hope. With hope comes life.

Walking for Zoe

The Lihn Family, along with members of our family and friends, will walk together in Phoenix's Inaugural Congenital Heart Walk on November 7, 2010. The purpose of this walk is to raise awareness and research funds for Congenital Heart Defects.

If you'd like to join TEAM ZOE and walk with us on November 7th, or care to donate and have not had the opportunity, there are a few weeks left. Simply go to our team page to join the walk or the donation page for Team Zoe.

With the help of Aunt Stephanie and Joel Proto, we're having TEAM ZOE t-shirts printed for the walk. You don't have to participate in the walk, however, to purchase a t-shirt. Any proceeds from the sale of the shirts will go to our Team Donations to help reach our fundraising goal.

If you plan to walk, we will take a group picture of TEAM ZOE either before or after the walk. The t-shirt will sell for $10. For a sneak preview of the design, which is ready to ship to the printer...

(Front Design)

(Back Design)

We are very much looking forward to seeing you at the walk, or around town in your TEAM ZOE shirts.

I'll need to place orders in the next week or so. If you'd like a TEAM ZOE shirt, please email us at lihnsc@yahoo.com and indicate the quantity requested and shirt sizes (S, M, L, XL or XXL).

Go ahead, join us and some of Zoe's biggest fans on November 7th.

(A sweet photo we received while in Philadelphia from a fellow heart mom. Thanks MacKenzie and Trey!)

Go Team Zoe!

A Visit to Remember

This afternoon, I sat and reflected on our recent trip to Philadelphia. While looking through each photo taken, I relieved each memory, feeling pain, anxiousness, happiness and joy. One day, in particular, brought me some serious entertainment.

One of Zoe's biggest fans, "uncle" Brian came to see his 11-pound hero post-surgery. This was Brian's third time (yes, i said third; he is really lucky) visiting with Zoe. For this visit, Brian brought his friend, Mike.

Uncle Brian and Mike are entertainers, literally. Click here. During this visit, Uncle Brian and Mike did not disappoint.

We were four days post-op. I'd spent the night at the hospital, knowing we were having visitors the next morning. I woke early and walked to the Ronald McDonald House for a quick shower. On my return, I knew our guests beat me to the hospital. I expected them to be in Zoe's room, marveling at her beauty. Instead, as I walked down the hall, I see Uncle Brian hovering over Mike, who is slumped over (no joke) in a chair just outside Zoe's door. I thought to myself, "oh, how sweet, they waited for me before going in." Not so much. As I got closer, I see that Mike is completely pale, orange juice in hand. Uncle Brian looks at me and said, "I don't know what is wrong with him." Nurses and doctors surrounded Mike.

"Do you have any medical conditions we should be aware of?"

"Has anything like this happened to you before?"

"Are you having any changes in vision?"

"Let's get you a wheelchair."

"Come, lay down in this room for a bit."

"Let's get his blood pressure."

After a box of OJ and a quick nap, Mike was feeling better. The nurses were not convinced. Security was called and a stretcher appeared. "Mike, we're going to take you next door to get checked out." For those of you who know Uncle Brian, you'll get a kick out of this... Brian, immediately shouts, "No, no. We don't have insurance!" The nurses and doctors insisted Mike go to HUP (Univ of Penn's Hospital). Brian insisted right back, "we don't have any insurance. I know one pill in this place costs 400 dollars!" After sitting bedside with Zoe for 5 days straight, this was very entertaining. I regrettably did not have the camera ready and missed out on some serious photo ops.

Mike sat in his wheelchair and recovered.


Eventually, security left, nurses retreated one by one and the stretcher disappeared.

What was Mike's problem you ask? No idea. I think he took one look at Zoe and was breathless. She is quite gorgeous (or perhaps it was the large incision on her chest.) Uncle Brian thought he pinched a nerve in his back. Hmmmm...good one.

Throughout the day, nurses popped in and out, asking how "your friend Mike" is. When Mike's nurses were leaving for shift change, they came in to ask if he was ok and get an update. For those of you wondering how Mike is, he's just fine. As soon as he left the hospital, he felt better...or his pinched nerve miraculously healed.

Despite Mike's ailments, we were able to snap some great photos of the visit. Zoe and Uncle Brian seem to understand each other quite well. Whenever he's around, Zoe stares into his eyes. She knows he loves her dearly.

(A recreation of the ailing Mike)

When Uncle Brian and Mike return to visit Zoe for her Fontan, I'll be sure to have the camera ready!

How is Zoe?

Simply put, Zoe is doing great. As a mom who has spent the last 4 months fearing for her child's life, on a daily basis, and pleading with all powers that be to spare Zoe's life, it is difficult for me to say she is doing "great." I fear that if I let my guard down too much, someone will rush in and cause us harm. I do realize I cannot live life this way and try each day to lower my emotional guard, little by little. This is not an easy task.

For the past week, we've been enjoying the post-Hemi life. No logging feeds, weight, oxygen sats or heart rates. Just an occassional check here and there. Zoe's oxygen remains consistent and, as her cardiologist promised, a spotty appetite until she settles fully.

Zoe has not had any pain medication, including tylenol, in the last 48 hours. Other than teething, she seems to be pain-free. Her scar is healing well. Next week, she'll have her second post-op ECHO to check on heart function and the status of her pulmonary arteries. Of course, with Zoe, there is always something to "watch for." The knowledge that Zoe's left pulmonary artery remains on the smaller side and her descending aorta naturally narrowing sticks in my mind, like a bur in my sock.

Emerson is growing quite fond of her sister. She is more than aware that Zoe is special and we're teaching her, slowly, just how special her sister is.


As I mentioned, Zoe is teething. Every time I turn around, she's got something in her mouth. OCD mommy has warm soapy water in the sink nearly 24/7.


Through her discomfort, Zoe manages to give us big smiles.


And the biggest, prettiest eyes ever.


I think in this picture, Zoe is trying to tell her mommy to relax and take it easy.



If she can do it, so can I!