An Amazing Letter

On our CHD journey, I've had the opportunity to meet the most amazing women - my fellow heart moms. It is these women who have lifted me up, to be stronger, wiser and a better heart mom. They are there to answer my questions, listen to my fears and lend a shoulder to cry on (day or night.) One of these moms, Amy Bennett, wrote a courageous and heartfelt letter to her perinatologist - a perinatologist who did not give them HOPE for their son.

Amy's son, Bodie, like Zoe, was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS). Amy, like myself, did not receive any HOPE from her care provider. For those of you who do not know, my OBGYN called a week after I learned of Zoe's diagnosis...a week after I called his office and asked for a return phone call. When he did call, he jumped to the conclusion that I would terminate. He notified me that I had up to and including week 24 of my pregnancy to deliver Zoe. He said she would survive a short while and then pass. He told me that I would get to hold her and they'd "peform a nice service."

Little did he know, while I'd waited (impatiently) for his return call to discuss Zoe's diagnosis, he granted me seven days to think about Zoe's diagnosis and educate myself. With the help of Zoe's cardiologist, I chose HOPE. I chose to FIGHT for Zoe. I cannot imagine my life today had I not sought further counsel.

Amy's letter is just the beginning; the beginning of a huge movement to raise awareness and spread HOPE. The moms I've met on this journey are an inspiration and WE WILL MAKE A DIFFERENCE!

And so, a huge thank you to Amy, my fellow heart mom for her words:

http://hopeforbabybennett.blogspot.com/2010/09/rethinking-day-that-changed-everything.html

In the Halls of CHOP

As I reflect on our recent trip to Philadelphia, I cannot get certain images out of my head. All of those images take place within the halls of CHOP. Each day at CHOP brings with it a range of emotions and activities. Some moments good, some bad. Some tears, some joy. And lots and lots of waiting. If I close my eyes, I can see the hallways clear as day.

I see the children riding their Playskool tricycles with oxygen tanks and NG tubes in tow.

I see the children who underwent heart transplants walking with their IV poles and their parents with cautious optimism in their eyes.

I see the new mom, in her pink CHOP robe, being wheeled to the Cardiac Intensive Care Unit to spend precious moments with her ailing infant.

I see beyond-nervous parents waiting for their child's surgeon in the consultation room.

I see countless nurses and doctors hovering over cribs, occupied by CHD warriors.

I see familiar faces of those whom we've shared this journey and mourn the loss of those who I want to see dearly.

But the most touching moments I saw at CHOP during our last visit remain . . . Hope and the Will to Live.

Since Zoe's birth, my eyes have opened to a much bigger, and better, world. It is true, in order to be fully aware and alive, you must experience greater joys and greater pains. But how else can one truly live if you're not fully present? As I walked the halls of CHOP in September, I was fully aware - taking it all in.

I wondered, as I walked and read the quotes mounted on the walls, How could I have missed these plaques before? Words of wisdom from those who've passed before us.





I see, in the forefront of my mind, myself.

Me, alongside my daughter, fighting. Fighting for life. The Hope in my eyes and her Will to Live. I love you Zoe Madison and am so proud to be your mom. I will fight with you, and for you, as long as I live.

Settling In

As most of you know, Caleb, Zoe and I flew home on Tuesday afternoon, a successful and very uneventful flight. Zoe is becoming a champion flyer and gets a thumbs up from fellow passengers on every flight. "Way to go! I didn't hear a peep out of you!" Zoe also made quite an impression on our Southwest flight attendant who was asking questions about why Zoe needed oxygen. I'm pretty sure she wasn't expecting the answer she got and was amazed that Zoe had open heart surgery exactly one week prior.

I love sharing Zoe and her story. She is an amazing girl who has amazing things in store for all of us.

My dad came to pick us up at the airport. We weren't too excited right after we stepped off the plane. Phoenix's forecast of 100+ degree weather left us longing to be back in Philly.

When we arrived home, my sweet Emerson was there waiting for us with Grandma. When she turned around and saw that momma was home, she looked at me with puppy dog eyes and nearly cried. Emmy was so happy to see us. I think she began to think we were never coming back.

From this family photo (taken just minutes after we walked in the door) you can see just how happy Ms. Emerson is.


Simply because we were home, didn't mean it was time to rest. The very next day, Zoe had a cardiology appointment which quickly turned into a trip to the hospital next door. This time, for a routine chest xray. Dr. Stock wanted to make certain that Zoe's lungs were clear, since she did have a small plueral effusion upon discharge. Moments after we left the hospital, Dr. Stock texted me, letting me know that "Chest xray looks great, lungs are clear."

Ok, are we allowed to breathe easier now?!

Zoe will continue to have cardiology appointments which we hope will become fewer and further between as the months pass.

For now, it's time to focus on our girls and getting back into a routine. It's time for Zoe and Emerson to bond as sisters which they haven't really been able to do until now.

(What better way to bond than with Nick Jr.?)

My Hero (Second to Zoes)

"Thanks for saving my baby's life." That is all I could say to the man who works miracles with his hands.

As some of you know, Dr. Spray is not a big "hugger." Nonetheless, I figured he might allow a quick picture, and he did, just minutes after completing Zoe's second open heart surgery. Someday, I hope to get one of he and Zoe, but this'll have to do for now.


I want to thank Zoe's entire team, both here at CHOP and Arizona Pediatric Cardiology in Phoenix. They've kept a very close eye on Ms. Zoe these past four months and worried about her much more than they led on (as admitted to us when we arrived in Philadelphia.) And a special thank you to Dr. John Stock, who, probably regretably, gave me his cell phone number. He's responded to my after-hours texts on a regular basis, without hesitation. Most recently, yesterday afternoon.

Which brings us to today. We're on our way home. It seems surreal that we are to go home, and relax. Is that possible? Many of my heart mom friends say it is...to some degree. We'll do our best.

Thank you, all of you, who sent loving thoughts, positive energy and prayers to us during this most recent phase of our journey. It has been challenging. Far more challenging than I thought. Seeing Zoe in tremendous pain, holding late nights in the hospital, witnessing new and distraught mothers being wheeled to the CICU to see their babies and rooms upon rooms of ailing children really takes its toll. Our children are amazing. Zoe is amazing.


Now, we can allow Zoe to heal and hopefully have several months (20-32) before her next needed procedure - The Fontan - the last of the 3-staged surgeries required for HLHS babies. Thoughts and prayers for smooth sailing!

We will continue to share our journey with you, as I know many of you love Zoe dearly and want to keep updated on her progress. Now that Zoe is post-hemi-Fontan, I can start thinking of important things (besides back to work) like Halloween costumes for the girls!

Love to all,
The Lihns

Zoe and Curtis

Here they are, the troublesome two. Curtis and Zoe have been through a lot together. Curtis was born a few weeks before Zoe. Curtis and Zoe were podmates after their Norwood. They've struggled with complications and fought to their Glenn/Hemi. Both will be discharged tomorrow, happy and healthier!


These two wild ones were up again late last night. I talked to Curtis' mom who was well aware of their shenanigans. In fact, she returned to the hospital at 1 a.m. to find Curtis sitting pretty in his nurses lap and Zoe next to them in a stroller at the nurses station. These two are too much! Just look at their faces. Curtis is giving Zoe a nudge, "Don't tell them anything Zoes!" After this picture was taken, Zoe and Curtis returned to their rooms...to NAP! They slept all afternoon. Must have a rager planned for their last night together.

Thankfully, Zoe's nurse pointed out that we're 3 hours behind in Arizona, so Zoe should be in bed by midnight when we get home. Zoe's nickname at CHOP is now "Arizona." She likes it. Too bad her buddy Curtis is from Louisiana...and a Saints fan. Boo, Hiss.

Hopefully, Zoe will get to hang out with Curtis again when they return for their Fontan surgeries.

Trickery

Zoe is up to some tricks. First, getting her days and nights all mixed up. Great, just in time for our return home. Thanks CHOP nurses...they take her out of her room at night and let her "socialize." She's a "social butterfly and smiles all night from midnight to 2 a.m." That's all fine and dandy, but I'm certain I won't see any CHOP nurses at my house at 2 a.m. next week helping me out any. Zoe and her friend, Curtis hang out and smile and keep the nurses company. I wonder if Curtis' parents know about the party they hold each night at the nurses’ station. Perhaps I should warn them tomorrow.

Today, Zoe played some games with her oxygen levels. Just when we think she's ready to be weaned completely, she'll dip down again. Perhaps she is a party animal and doesn't want to leave. She'll miss Curtis too much. (Curtis is definitely a cutie-pie, just ask anyone who's been at CHOP in the last 5 months; he's quite famous.) I overheard the nurses saying, "Oh Curtis is back!" The other retorted, "Oh really, how is his hair?" I'll have to see if I can get a picture of them together, then you'll see...

After bathing Zoe this evening, I noticed a knot/some swelling underneath the skin at the incision site. Before I get all freaky, we're going to have the cardiothoracic surgical team check it out at 5 a.m. on Monday when they arrive. Please pray that it is not an infection; we really, really want to go home on Tuesday. (Update: the surgical team is not concerned about the knot and believes it is from the sutures or muscle overlay. Of course, our instructions are to "keep an eye on it.")

I'm missing Emmy something awful. My parents took her to our house today. She got to the door, peeked in the window and said, "Zoe? Mum?" Makes me want to jump on the next flight outta here.

So, if everything goes as planned, we're headed back West late Tuesday afternoon.

And, in case you were wondering, Zoe is as cute as ever!






We'll keep you posted to our goings-on.

The Lihns

Update from Philly

Things are good. Really good. Zoe is progressing quite well. Yesterday, her headaches seemed sporadic and required zero Morphine, only 2 doses of Oxycodone and Tylenol every 4-6 hours. I could finally see my baby girl again! Mommy was very happy and enjoyed making Zoe smile all day - hence the delay in updates.

This morning in rounds, the plan is to ween Zoe completely from oxygen and prepare for a Monday discharge. Yay! So far this morning, Zoe has been off oxygen for nearly an hour and her sats are in the upper 70s while sleeping and mid 80s during wake time.

That is all for now, back to my sweet princess.

In the meantime, here are a couple of Zoe feeling better, post-bath pics.




Love,
Stacey

Ouch! My head.

Hi everyone. Thanks for following my story. I had a rough, uncomfortable day today. Please send prayers and positive thoughts for a less painful day tomorrow.


Love,
Zoe Madison

Angry, uncomfortable Zoe

Today, Zoe was moved from the CICU to the CCU. When we saw her this morning, we could immediately tell that her head was more swollen than yesterday. A swollen head, of course, means increased headaches and discomfort. Zoe is much harder to console today, which is to be expected, given how she feels. We were told that she didn't eat as well overnight, which again is probably a result of how crappy she feels.

Throughout the morning and into this afternoon, her eating has remained sporadic and it's quite clear that Ms. Zoe feels miserable. The goals today remain - pain management, keep fluid off the lungs, and wean from the oxygen. The doctors in the CCU are adjusting the various pain meds of Tylenol, Oxycodone, and Morphine to find the right balance to make Zoe comfortable. We are trying to avoid the Morphine because it causes constipation, which gives rise to a whole new set of issues.

Also, Zoe's body decided that this week would be an appropriate time to teethe. Today also seems to be one of her more uncomfortable teething days. The Tylenol should help with that.

She seems to be retaining more fluid today, which may explain the increased puffiness in her head. To address that, the docs have increases her Lasix, in an attempt to balance out her fluids by equalizing her liquid input v. output.

Most importantly, the focus today is on pain management and helping Ms. Zoe feel better, which will allow her to get some rest. But between her swollen head, teething, scarred chest, and indigestion we have an uphill battle.

We will update more as things change.

The Progress Continues

Fortunately, there is not too much to update on Ms. Zoe. As expected she is still pretty swollen in the upper torso and head, which causes the severe headaches. They are keeping her as comfortable as possible with Tylenol and Morphine. She is now starting to remain awake for longer periods of time. Her high flow oxygen has been reduced to 2L of regular flow. She's also been weaned off one of the heart function meds. She continues to progress. In fact, tomorrow she will be promoted/moved to the CCU or step-down unit. That move means her care is no longer intensive and she does not require one to one nursing care. Overall, Zoe is doing as well as can be expected.

The goals for tomorrow, after her move to the CCU, are to continue to wean down the oxygen, pain management, and flushing of fluids to bring down the swelling.

In the meantime, since we were told our posts have been "factual and serious," below are several photos taken throughout the process.

(Zoe's post-surgical set-up)

(Concerned mommy)

(With this BiPap mask, who wouldn't be angry?)

(Mom holding Zoes for the first time post-surgery)

(Daddy feeding Zoes for the first time post-surgery)

(Hanging out with Ronny Mac)

Okay, off to bed. We got a sleep room at the hospital again tonight. This will allow us to check on Zoe periodically throughout the night and early morning. As of Thursday night, we will resume staying at the Ronald McDonald House.

We will update some more tomorrow.

The Lihns

Making Progress

Zoe had an eventful morning. Dr. Spray's surgical assistant came by and removed Zoe's chest tube, pacing wires and atrial lines. Initially, Zoe was far from pleased, requiring additional Morphine - her drug of choice. Her nurse then removed her renal line (for continual temperature checks) and foley catheter. The team wanted her cath out as soon as possible due to her recent UTI.

She then had a chest xray which showed improvement on the lungs. It also highlighted the excessive air bubbles in Zoe's bowels. Air bubbles = very bad gas. Poor babe, like she doesn't have enough to worry about. To flush her bubbles, we fed her a 3 oz bottle of milk. No problems eating; she took the bottle like a champ. Shortly after eating (and a little Colace), the air bubbles escaped. She did a great job stinking up the entire "pod" (4 infant beds to each pod) with her bowel movement.

Zoe is waking up and coming out of her sedated state. She'll require Morphine every 4 hours for pain control. The nurses hope that by tomorrow her body will become more accustom to the new blood flow and her headaches will decrease.

During rounds this morning, we got some great news...no more Lovenox injections! Yay!

Zoe will remain in the CICU today as we attempt to wean her from oxygen and switch her over to what will eventually be her medication upon discharge. Perhaps by tomorrow we'll be able to head over to the CCU step down unit and be that much closer to going home.

Great morning, let's hope and pray for a great afternoon too!

Zoe's Night

Zoe had a good night. Her head is quite swollen, but her pain is being managed with Morphine and Dex (a sedative which does not interfere with respiration.) She took a 4 oz bottle of pedialyte this morning and will hopefully tolerate breastmilk today. Her chest xray this morning was a little fuzzy, meaning she has some fluid on her lungs. They anticipate this will clear with diuretics. Throughout the night, Zoe's blood gas continued to improve. Her carbon dioxide levels are decreasing, slowly. She is taking small steps toward recovery.

In about an hour, CHOP is conducting professor rounds in the CICU, which includes Dr. Spray. I must run, don't want to miss his report on Ms. Zoe.

Plan B

The BiPap machine initially seemed to cause the carbon dioxide levels to trend downwards, however, as the sedatives wore off, she became extremely agitated with the pervasive BiPap machine. Agitation was not going to help her vitals. Essentially, as a cardiology fellow described it, being on the BiPap is analogous to sticking your head out the window of a moving car.

Accordingly, some of the gifted nurses pushed the docs to switch from BiPap to a less invasive method of high flow oxygen through a nasal cannula. They also tweaked her meds a bit to increase her comfort level. Thirty minutes after the switch, they retested her blood gasses, which were much better, even close to normal. The morning nurse stayed 45 minutes past his shift, because he didn't want to leave before seeing the carbon dioxide results. One of the other nurses, whose shift ended, requested that the numbers be texted to her. Once it was confirmed that the carbon dioxide was improved two of the doctors came over and high-fived the nurse who pushed the idea of tweaking the meds and switching from BiPap to high flow via cannula.

They will test her blood gases again soon. The doctors expect Zoe's numbers to continue to trend in the right direction. Otherwise, she continues to rest comfortably. Hopefully we can rest comfortably tonight too. We were dozing at Zoe's bedside; clearly a sign that we're beat, but also a sign that we are all more comfortable with Zoe's progress. We just have to get used to the notion that Zoe will do things at her own pace.

Later tonight, assuming the numbers continue to trend in the right direction we will try to arouse Zoe enough to feed her a bottle. Tomorrow, she will start getting some of the lines and wires out.

Thanks again for your prayers and positive thoughts for a clean and speedy recovery - from here on out.

More updates Wednesday.

Working out the Kinks

After heading into the cardiac intensive care unit to get our first post-surgical glimpse of Zoe, we noticed increased activity at her bedside. Zoe's oxygen saturations were a bit lower than expected and her P waves, an electrical current in the heart, were sporadic, which affected her blood pressure. They are also watching her increased carbon dioxide level. None of these issues are totally uncommon following the hemi-fontan surgery, but added stressors none-the-less.

The critical care doctor seemed to be a bit concerned about "staying ahead of the curve." He indicated that he didn't like the "direction the numbers were headed." He, however, emphasized that the numbers were "not yet dangerous." He is being proactive and trying to get her on the right track before there's a real problem.

The root of most of these problems is quite possibly the fact that Zoe is still heavily sedated from the anesthetic. This is somewhat reminiscent of her Norwood surgery, when she had to be re-intubated following surgery, because her body was still too sedated to breathe on its own. When she was ready, she came around.

We are hoping she will do the same this time. In the meantime, as a less restrictive alternative to re-intubating her, they hooked her up to a BiPap machine to help her with breathing. The theory is the assisted breathing will bring in more oxygen to her body and thus regulate her carbon dioxide and other vital signs. Right now they are testing her blood gas every half hour and keeping a very close eye on her. Things seem to be slowly moving in the right direction, as Zoe works out the kinks.

Since Zoe is still sedated, and we are on 9 hours of sleep in three days, with no food intake yet today, we stepped out for a quick bite to eat. The nurse emphasized that we will want to be there tonight, because she will more than likely have severe headaches, as a result of the rerouted blood flow to the upper body. We won't escape the headaches, as her coloring from the nipple line up is quite purple. We definitely want to be there to comfort her as she deals with the likely inevitable headaches.

Please keep the prayers and positive thoughts going for a smooth and speedy recovery for Zoe.

Second Update

Zoe is out of the OR and doing well. The team is getting her set up in the Cardiac Intensive Care Unit. As soon as she is awake and alert enough, they will attempt to remove the breathing tube. Hopefully, the first time we see her, she will be breathing on her own.

We met with Dr. Spray just minutes ago. He went ahead and performed the Hemi-Fontan due to the large patch required from the left pulmonary artery to her lung. She had quite a bit of scar tissue from the Norwood, which is why the surgery "took so long."

We hope to see her within the next half hour, after she's settled in her crib.

After the great news, the first coherent sentence out of Stacey's mouth (all morning) was, "I need some guacamole."

Stay tuned...

First Update

We just received our first update and they are already warming Zoe up from the deep hypothermic circulatory arrest. The nurse said Zoe is doing "wonderfully." He also said Dr. Spray is moving quicker than he expected.

It should be about an hour or so until she is completely out of the OR.

More updates to come.

Surgery started

Surgery is happening as you read this.

We walked Ms. Zoe down the hall to the OR door, then daddy handed her over to the anesthesiologist. We were then taken to meet with Dr. Spray.

Things were delayed a bit, surgery was scheduled for 8:30, but didn't get started until about 9:45.

We should have our first update at 10:45 Eastern Time.

The first part of the actual surgery, and one of the longest components, is cutting open her chest and cutting away the scar tissue from the first surgery. When cutting they have to remove enough scar tissue to access the heart but they also have to be careful not to damage the two main nerves that are in that area, one that controls the voice box and the other that controls the diaphragm.

More updates soon.

A New Day

This morning I woke to the sun rising over the City, beaming into Zoe's hospital room and lighting up her bed. Today is going to be a good day.




In one hour, we will walk Zoe down the hall and hand her over to anesthesiology. We'll then meet with Dr. Spray to discuss the specifics of Zoe's surgery. Surgery is anticipated to last approximately 3 hours. We'll update as things progress. As you can imagine, nerves are running rampant this morning, but nothing but positive energy and light is filling our room.

Stage two, go!!

It's late and the thought of our baby girl undergoing her second open heart surgery in four months has us up late into the night.

We know surgery will happen at 8:30 a.m. Philly time and Zoe is the only surgery on Dr. Spray's schedule Tuesday, which is a good thing. What we don't know is exactly what percise surgery he will perform.

For the stage 2 surgery, there are two comparable surgeries which can be utilized: the bi-directional Glenn and the hemi-fontan. Typically, the Glenn is performed. Many surgeons have a preference and regularly perform the one they are partial to. Dr. Spray can do them both and he decides which one is the most appropriate to his patient and operates accordingly. In Zoe's case, since her left pulmonary artery is significantly narrowed, Dr. Spray will likely perform the hemi-fontan. The functional outcome between the two procedures is essentially the same, but the hemi-fontan is more invasive. The benefit, however, to the added invasiveness is it eliminates some needed steps from the third surgery, the Fontan. Thus when it's time for Zoe's Fontan, that surgery will be quicker and easier.

For a visual, and to hear it directly from the professionals' mouths, check out this video from CHOP. Dr. Spray is the one wearing the white lab coat.

We've been forewarned of Zoe's tough recovery after her surgery. She will experience horrible headaches due to the added blood flow to her brain. Please say a prayer that Zoe's headaches pass quickly and do not cause her much distress. It will be extremely difficult to see her in such pain.

Since many of you are on the West Coast, or close to it, you will just be rolling out of bed as Zoe's surgery wraps up. Regardless of when you wake or get a chance to check the blog, however, we will try to update as we receive information.

Please say prayers, send positive thoughts, and check in for tomorrow's surgical and recovery updates. Thanks again to everyone for all the support and encouragement. We don't get the chance to thank everyone individually, but all your words are read and heard, and they mean a great deal.

The Lihns

Life is...

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

~Mother Teresa

Cath Complete

Zoe did well during her cath. We met with Dr. Glatz (Zoe's interventionist) following the procedure and viewed the cath photos. Fascinating.

Most importantly, Dr. Glatz informed us that Zoe is ready for her Glenn. The stents are still in place and her shunt is open. Her left pulmonary artery is mildly to moderately narrowed, but will be fixed tomorrow by Dr. Spray. There is also very slight narrowing of her arch, but no intervention necessary - we'll just keep an eye on it. I asked Dr. Glatz if her arch could still narrow and he stated that most "single vents" narrow interstage 1-2 and only a few narrow post stage 2. Zoe's heart function is on the lower side of normal (which we already knew.) There is a good chance that her function will improve post-Glenn as this surgery will offload the work of her right ventricle, allowing her heart to pump more effectively. She has NO tricuspid regurgitation. For those of you not in the heart community, this is very good news.

Zoe's clot in her left femoral artery is still present; less-so than 3 months ago, but enough to prevent any future caths at that site. She has some flow through the artery and plenty of collaterals to allow flow and growth. Her right vein and artery are wide open and available if ever needed for future caths. Good news is, we expect to get the clearance to stop the Lovenox injections after her Glenn. Yay!

Dr. Glatz is meeting with Dr. Spray to discuss Zoe's surgery and we will receive a surgery time later this afternoon.

Zoe is recovering and still snoozing from sedation. As soon as she wakes, she'll be hungry and ready to eat. Zoe will spend the night in the hospital (along with mom and dad) tonight and wake bright and early for the next stage.

Thank you for all of your love and support. Zoe is doing great!

The Lihns

Cath is underway

After a short night of sleep, we woke Zoe up at 4:00 a.m. this morning to give her some milk, since she couldn't eat past 5:00 a.m. After she ate, we put her back down for a nap as we got ready for the day.

We headed over to CHOP at 7:00 a.m. Once we arrived they quickly checked us in and started preparing Zoe for the cath.




They gave her some meds to sedate her. As you can see, they worked like a charm.


After checking her vitals, giving her pre-cath meds, starting an IV, and a good luck kiss from mom they took her back to the cath lab. She is such a trooper, between her ER visit last week, her hospitalization starting the next day, her airplane trip and her cath today, she has been through so much in the last 14 days. Despite it all, she always manages to smile. She is such a trooper; we are so proud of her.


Just a few minutes ago, we received the first update, which was essentially that all wires had been placed and the substance of the cath was just getting underway.

More updates to follow.

Out and about

Zoe took in some sights before her big day. She loved strolling through campus and staring at the trees. Since she rarely gets out, we took some pictures of her adventures in Philly.

(Where is Dr. Spray?)

(Meeting Ben Franklin)

(Checking out the old school Philly trolley)


(Zoe making mom laugh, as usual)

(Zoe smelling the flowers. She was quite fascinated.)

(Peek-a-boo, I see you!)

(I love this picture...and my precious Zoes)

That was yesterday...

Today carried a much different tone. We stayed in the hotel room and passed time watching football. Zoe likes football. She even falls asleep like her mom while kicking back.

It's late. 11:45 p.m. Tomorrow will be a long, hard day. Followed by several more long, hard days. I was hoping to get to sleep early, but of course, sleep won't come easy tonight. We must wake at 4 a.m. to give Zoe her last feeding before her cath. She is not allowed anything after 5 a.m. We'll arrive at CHOP at 7:30 a.m. for admission and Zoe will be taken for anesthesia prep.

I do not want to hand my Zoe over. Someone will have to pry her from my warm arms. Knowing we've brought her to the best place possible, to the hands of the well-trained and experienced, does not make this process any easier. Zoe's last cath came with added heartache - blood clots and stents. We hope and pray that tomorrow's procedure, by Dr. Glatz, will be smooth and uncomplicated.

We'll also be calling the Ronald McDonald House to see if they have a room available for us. If so, Caleb will have to leave the hospital and relocate us yet again. We plan to sleep at the hospital for the next few nights (at minimum) and be sure Zoe knows we are by her side, fighting this battle along with her.

Please continue to keep us in your thoughts and prayers. We'll keep you posted as our day progresses.

The Lihns

Room number what?

Late this afternoon, Caleb, Zoe and myself ventured out for a walk through the U Penn campus. When we returned to the hotel, our room felt like a sauna. The "engineer" came to our room and verified the A/C was on the fritz. Yeah, thanks guy.

As I fed Zoe a bottle, Caleb began packing and transferring our stuff to a room across the hall. Clearly, Caleb and I have different senses of smell. As soon as everything was moved, I walked in and smelled nasty, stale smoke. Ick! I insisted that we be moved to another room. Poor Caleb began gathering our things, for a second time, to relocate. This time, to the tenth floor. He began moving with help from the bell hop. When Caleb returned, I told him that perhaps I should check out the room first and make sure it meets my approval. :) He just looked at me and said, "it will be just fine."

When we arrived to our new room, the bell hop smiled at me as she opened the door. The first thing I saw...a dining room table. Second thing, a bar, refrigerator, microwave and two flat screen tvs - one in the sitting room and the other in the bedroom. The bell hop looked at me, smiled again, and said, "my favorite is the shower." Now, mommy was pleased. I think Zoe liked the new spacious room too.

After our rough night, we picked up cheesesteaks and some famous Yuengling beer and called it a night.

What is a Cath? & Photos from the Room

As previously reported, Zoe Madison must be at CHOP at 7:30 a.m. on Monday for her cardiac catheterization.

Many of you already know, too well, the intimate details of a cardiac catheterization. For those of you, however, who have not undergone a cath, as they are referred to in the biz, or haven't had a heart baby/child go through one, below is an explanation of the procedure and its purposes.

What is cardiac catheterization?

Cardiac catheterization is a procedure that involves puncturing an artery and/or vein, usually located in the groin, so that a small, long, flexible tube (catheter) can be guided into the heart and major vessels around the heart.

The catheter is moved through the heart with the aid of fluoroscopy (x-ray machine). This is usually performed to help in providing a diagnosis of heart problems.

With cardiac catheterization, pressure measurements and blood samples can be obtained from the various cardiac chambers and blood vessels around the heart allowing calculations of detailed information about the heart's function.

X-ray dye can also be injected through the catheters giving pictures of structures in and around the heart.

Why catheterization is helpful?

In addition to obtaining measurements and pressures, catheterization can be used to perform interventional procedures.

Interventional catheterization is a type of cardiac catheterization where actual treatments can be performed by use of specialized catheters. The types of treatments performed are varied and are individualized to each patient. Most commonly, interventions are used in certain cases where there are narrowed valves or arteries causing obstruction of blood flow.

These specialized catheters include balloon catheters that can open up narrowed valves or arteries and also catheters where devices can be deployed which can close extra vessels or certain "holes" in the heart. This is how Zoe's stents were placed in her shunt during her post-Norwood cath.

In Zoe's case, the cath will also give Dr. Spray a clear picture, complete with measurements and pressures of Zoe's heart and lungs so he can know, before her chest is cut open, precisely what her heart looks like which will allow him to plan the precise steps of Zoe's surgery.

Zoe's Cath

Since this is Zoe's pre-Glenn cath, and her Glenn is the following day, she will more than likely not receive any intervention. If a problem is discovered it will be addressed during the Glenn surgery. As we said, this is more of an informational, exploratory procedure to gather information for Dr. Spray.

From her first cath, Zoe developed a blood clot in her left femoral artery. The veins and arteries of an infant are so small, it's not uncommon for a blood clot to develop, at that age, as the result of a cath procedure. This is why Zoe underwent a leg ultrasound on Friday, the interventional cardiologist handling her case wanted to see the current stage of the blood clot. The clot could affect the integrity of the entry point in the left leg. If it is compromised, for entry purposes, there are other entry options, i.e. other leg, neck, or chest. This will all be determined Monday morning.

Until the cath, we are hanging out in the room, taking pics of Zoe and our surroundings. Here's a few pics to enjoy:

(CHOP and the other U Penn hospitals in the background)

(A view of Center City Philly from our room)

(Zoe relaxing)

(Aren't I cute?!)

Testing, testing...a day at CHOP

Our long day technically started at 3:30 a.m. ET when we finally went to sleep. The 3 hour time change is not doing us any favors. Between the stress and the beeping from Zoe's pulse ox monitor, a good night's sleep was not ours to have. We awoke at 7 a.m., got ready and headed to CHOP for a day of testing.

Zoe's day went a little something like this: weigh in at 5.3 kg, oxygen sats tested (multiple times), met with researchers, EKG, chest xray, echocardiogram, consult with Nurse Practitioner and Dr. Szwast, blood work and ultrasound. Quite a busy, busy day! At the end of the day - 5 hours altogether - Zoe passed out on the ultrasound table.


Even after the ultrasound tech finished, Zoe continued to sleep.


We opted to participate (Zoe, unknowingly) in 2 out of 3 research studies currently ongoing at CHOP. The first, is a simple blood test (which they will obtain during her cath) to study Zoe's DNA. The purpose of the study is to investigate how genes contribute to the development of heart defects and to study their role in clinical outcomes. Although heart defects are often diagnosed and successfully treated early in life, little is known about why such defects occur. In addition, researchers do not understand why children with the same type of heart defect have different clinical courses and outcomes. Studies suggest that genes contribute to the cause of heart defects and influence how each person does clinically. In addition to Zoe's blood, Caleb and I will also give blood for this study.

The second study Zoe will participate in is to assist researchers in identifying the presence and function of cardiac factors that exist in the human heart. There are specific molecules that exist in the body that are responsible for the growth and renewal of specialized cells. Physicians at CHOP have identified some candidate molecules that appear to fulfill the criteria for cardiac growth factors and may give rise to congenital heart disease. Researchers aim to discover how these molecules work in the heart. This study will require Zoe to give blood and heart tissue. Both items will be taken under anesthesia during her Glenn. Dr. Spray will remove heart tissue, as is routine in the Glenn. Instead of tossing it in the trash, Zoe's heart tissue will be used to help further understand these complex CHDs.

The third study, which we've opted out of, studies cerebral blood flow in the brain in single ventricle hearts. The purpose of this study is to understand how cerebral blood flow is affected at different stages of single ventricle surgeries and how it affects neurocognitive development. Zoe would have to undergo an extra hour of anesthesia and 2 MRIs one hour before the Glenn. Caleb and I felt that with all she has been through, we didn't want to put additional stressors on her, particularly one hour before the Glenn.

It has been a long, long day and we are exhausted. Time to get to bed...but first a few pictures of Zoe's travel adventures from yesterday.

Zoe's cocoon, to keep germs away, in the airport


Zoe in her BFF shirt, to honor her BFF Mia Grace whom we miss dearly


And a yummy bottle in flight, to help pass the time



Our weekend will consist of rest and relaxation before the big week ahead. Sunday football and naps! We'll keep ya'll posted as the days progress.

Love from Philly,
The Lihns

The Amazing Race

After a long night of packing and logistics, followed by a morning of multiple “do we have everything?” thoughts, we finally loaded up the car – two suitcases, two small carry on bags, a diaper bag, a breast pump, and a portable oxygen concentrator housed in a giant military container. Oh and a car seat, stroller, and our most precious of cargo – Zoe Madison. Off to the airport we went.

Once we arrived at the airport, Grandpa dropped us at the curb and we unloaded the myriad of contents, which we loaded in, like a game of Tetris, just an hour earlier. We drug all the bags to the curb and encountered a sky-cap who was unfamiliar with portable oxygen concentrators. When we unveiled it from its cargo box, he stared at it like it had a detonator. Recognizing his befuddlement, I explained what it was. He only heard the word “oxygen” and said “you can’t have that on the plane.” I took a deep breath, smiled, and explained I can and will bring the oxygen on the plane. I explained to him that the model was approved by Southwest and we provided the information on our reservation. He continued to look confused so I asked to see his supervisor. He summoned a supervisor who immediately asked us for the doctor’s certification for the oxygen. I turned around and Stacey, anticipating the next move, already had the letter in her hand to hand-over to the supervisor. Once we were approved, we headed in towards our gate.

Fortunately, at the security checkpoint, there was a dedicated line for families with infants or travelers with disabilities, technically we had both so were safe in that line, which allowed us to get right up to the front of the security line. As we navigated through the security line we ran into two different friends, who were able to sneak a peek of Zoe.

We pre-boarded the plane, got situated and readied for the long journey to Philly. Just prior to takeoff, Stacey and I almost needed cardiologists of our own. The oxygen comes with batteries and we had three of them. The oxygen company instructs you to check the power on the batteries before your flight. Early this morning, I checked the batteries and the meter displayed full strength. Once we were on the plane and powered up the oxygen, I realized there was one battery I did not check. So as the plane was preparing to back away from the jet way, I frantically put the last battery in the machine and tested it's strength. FULL LEVEL!! After Stacey regained her breath and retracted the threats of harm, we were airborne. After all that, we only needed two batteries on the flight and didn't need the third.

Zoe was excellent on the flight. She remained on oxygen the entire flight. We checked her oxygen sats every half hour or so and, with the oxygen, her numbers were good.

Bottom line we made it to Philly safe and sound. On the cab ride to the hotel, we drove right by CHOP, with its logo illuminating the night sky.


It feels weird to be back, but comforting at the same time. This is where Zoe was brought into the world, where her heart was touched and tweaked, where her life was saved. Being back for the second chapter feels good, nerve racking, but good. We have the utmost confidence in CHOP and Dr. Spray and we know we are in the right place.

We made it to our hotel at midnight local time, gave Zoe her meds, fed Zoe, and now we need to get some sleep. We have to be at CHOP in the morning for a day of pre-surgery testing.

Thanks to everyone for their prayers and positive thoughts. We will let everyone know how the testing goes.

The Lihns.