Progress! Slow and steady.

Last night, we spent the third night in a row in one of the five hospital sleep rooms dedicated to the Cardiac Intensive Care Unit. Our rental house isn't far from the hospital, just under a mile and a half away, but there is some trepidation about relocating our "home base" away from the hospital, and thus away from Zoe. The main benefit to the sleep room is we can get up and go see Zoe whenever we want, throughout the night and into the early morning, as visiting hours for parents is 24 hours.

In the middle of the night, when the lights are dim, when most other parents succumb to their fatigue, when the hospital is staffed with the bare bones night crew, and most other activity has ceased to a halt, is the time when we log some quality time with Ms. Zoe. Granted, at that time, she is sound asleep, but having those peaceful moments, in her presence, without the distraction of the daytime noise and activity, is incredibly valuable.

Now, on to Zoe's progress, which never ceases to amaze us. She continues to be weaned from her oxygen, requiring less and less everyday, as her lungs step up and more regularly say, "I got this."

She continues to feed from a bottle, however, she is not taking a level sufficient enough to satisfy the physicians. So, they put an NG tube in today to provide her with essential nutrition, while they supplement with bottle feedings and continue to get her more comfortable with that process. Obviously, the goal is to get her to a point where she takes all her food through a bottle, rendering the NG tube unnecessary. It is difficult, however, when she didn't have anything in her mouth, for the first four days of her life, except a ventilator tube. Tomorrow, a speech therapist will examine Zoe and look at her vocal cords and determine what type of nipple and bottle are best suited for her anatomy.

We also heard her cry today, for the first time since her birth. She wasn't able to cry again sooner, because she was unconscious for two days and yesterday her vocal cords were swollen and irritated from being extubated, then reintubated, and then extubated again.

Also, on Monday, Zoe will be weaned from almost all medications with the exception of Lasix, aspirin, potassium supplements, and Tylenol. She will also have her RA lines (catheter lines placed directly into the right atrium of the heart, used to infuse medicine directly into the heart) and two tubes going in to her belly button removed, which means we can bring baby clothes tomorrow, to dress Zoe up! And more importantly, we will get to hold her for the first time since the moments immediately following her birth.

As Zoe's nurse said today, "she is doing awesome!" We are very pleased with how she's responded to the surgery. We've had a couple scares, and we may have more, but for now, we are elated with Zoe's slow and steady progress.

We will post pictures of Zoe's clothing debut. In the meantime, here are some photos (from yesterday) to enjoy.



Zoe holding mommy's hand:



Stacey changing her first of MANY Zoe diapers:

Take this ventilator and shove it.

After spending most of the late night and early morning tugging on her ventilator, telling the doctors, in her own way, that she was ready to have the ventilator removed, the doctors acquiesced Zoe's wish and they removed her ventilator early this morning. She is still on 40% oxygen, but she is doing very good. They also removed the dressing on her chest, so now you can see her battle scar (and pretty eyes):



Zoe made some more progress today in terms of eating, she took two small bottle feeds and kept most of it down. For a normal baby, feeding is not usually an issue, but for some reason children with HLHS often have problems with eating, so introducing eating and progressing with feeding can be a source of worry.

Now that Zoe is coming off the last of the sedation, and opening her eyes with more frequency, she was able to see all the visitors she had today: grandma and grandpa Muenich, grandma Lihn, and uncle Brian.

The plan continues wean the oxygen until Zoe breathes completely on her own without any assistance. Also, to continue her feeding and hope that she takes to bottles. If she is unable to tolerate the bottles or doesn't take to it, the doctors will insert an NG tube to provide nutrition.

We have received several positive comments via email, Facebook, and this blog. We both want to emphasize that the positive comments are extremely encouraging and helpful. I wish we had time, and energy, to respond to all of them, however, at this point we don't. But we do read all of them and very much appreciate the support.

Please continue to send positive thoughts and prayers that Zoe continues on a path of healing and conquering the limitations she was unfortunately dealt. Also, please pray for the Carpenter family, Laura and Myers. Stacey met Laura through Facebook. Like us, Laura and Myers found out at their 2nd trimester ultrasound that their baby suffered from a congenital heart defect. The defect was different than Zoe's, it was a rarer defect called truncus arteriosus. Like us the Carpenters also planned to travel from their home to Philadelphia to deliver their baby and have the necessary surgery at CHOP. Little Gwen Carpenter was born on March 17, 2010. Dr. Spray performed surgery on her on March 19, 2010. After breezing through surgery and recovery, Gwen was discharged from CHOP on April 5, 2010. We learned today, however, that little Gwen's heart condition was too much for her to overcome and she passed away this week at the age of two months.

This was difficult news to ingest, to say the least. We were never able to personally meet the Carpenter family, but between Stacey's emails with Laura and following their family blog, I felt like we knew them. They say surviving a congenital heart surgery is a roller coaster ride full of ups and downs, for both the afflicted child and the parents. You always know that death is a possibility. We were told that when we received Zoe's diagnosis, by one of the cardiologists, and before the surgery. Gwen's parents were told the same thing. That doesn't mean you expect it or truly understand the risk. We thought Gwen cleared the major hurdles and was on a good path to living with her condition, as I'm sure her parents did. For one reason or another, however, and without much warning, Gwen's body decided it could no longer fight the battle. This is terrifying. Every time we look at Zoe, even though she appears strong, there is now the more realistic thought that her body could turn on her at anytime. Will I get to watch her go to kindergarten? Will I get to see her graduate from high school? Will I be able to walk her down the aisle at her wedding? I don't have an answer to these questions. If I have any say in the matter, then emphatically, the answer is yes to every one of them. The statistics say that Zoe has a good probability of surviving this condition and living into adulthood. But, as Gwen taught us, life is fragile. The next day is not promised, for anyone. It is exponentially more fragile for one afflicted with a congenital heart defect.

I am thankful that we have Zoe in our lives, she brings us unmeasurable joy. She has already endured more than I can imagine, and certainly more than I've ever been forced to endure. I am so proud of her, I can't even put it into words. I can't promise the future, but I can hope like crazy. One thing I can promise, however, is that I will never take a day with Zoe for granted. Zoe, we love you.

Again, please continue to send positive thoughts and prayers to Zoe for her continued recovery from surgery and a long, happy life. Please also send prayers to the Carpenter family during this incredibly, devastating time for them. Also, thank you to all who have sent kind words of encouragement and support, they help us through each day.

We will continue to post updates. In the meantime, here are more pictures of Zoe, to enjoy:





Zoe and Uncle Brian:



Emmy and Uncle Brian:



Zoe with Mommy and Grandma and Grandpa Muenich:

Zoe's vote = not to vent

We visited Zoe for awhile tonight. She was awake for a good portion of our time at her bedside. She was moving her legs, her arms, and she was trying to cry. I say trying because, with the ventilator in, she can't make any noise.

Speaking of the ventilator, it appears Ms. Zoe is ready to take this matter into her own hands:



Zoe's tests tonight yielded good results and all her vitals are stable. As a result, they are going to try and extubate her again in the morning. Judging by Zoe's conscious reaction to the ventilator, she will be more than happy to have it out. She may even beat the doctors to the punch.

It was great to spend some time looking into Zoe's eyes tonight, particularly after two days of sedation and Vaseline coated eyelids. We're optimistic for a good day tommorrow and we are confident Zoe will deliver.

To vent, or not to vent...

Sorry for the long delay since the last update.

Zoe is now 48 hours post-surgery, which is obviously a huge hurdle. Yesterday, she was slowly improving, and they were able to ween her oxygen a bit. At one point she was down to 35% oxygen, from 100% immediately after Tuesday's surgery. She was also slowly starting to come off the sedation, i.e. wiggling her toes, twitching her arms, and half opening her eyes for a second or two.

We were able to secure one of the five sleep rooms at the hospital, which meant Stacey and I shared a twin bed. We haven't cuddled that much in years. Stacey had to get up every three hours to pump milk, then we'd take the milk to the freezer in the Cardiac Intensive Care Unit. The benefit of that is we also checked on Zoe every three hours.

We checked on her at 4:30 this morning and her nurse said she hadn't made much additional progress in terms of coming off the sedation. She indicated that they wanted to wait until she was more awake, before they attempted to take out the ventilator, which would put her in the best position to breathe on her own.

We went back to her bedside at 7:45 a.m. and there was a crew of doctors, nurses and other providers hovered around her. We stopped and watched from a distance, wondering if this was a normal thing or if there was a problem. You want to remain optimistic, but fear automatically overtakes you. One of the doctors looked up at us, and made eye contact, from a distance. We realized they were in the middle of something, so we nervously retreated and returned to the sleep room.

In about 30 minutes, a nurse came and found us and explained that at 6:40 a.m., the doctors wanted to remove the ventilator despite the fact that she was still somewhat sedated. Apparently she remained off the ventilator for about an hour, but she didn't do well, as her oxygen saturation was varied and her right lung partially collapsed. So, they had to re-intubate her, which is what we walked in on.

As part of the reintubation, they had to give her more sedative and paralytic medication, so it sort of sent her backwards in terms of regaining consciousness from the initial surgery.

As of this afternoon, her vitals remain stable, and they are slowly lowering her oxygen levels and trying to bring her out of sedation. Basically, because of the setback, she is about at the same spot she was late yesterday.

The goal for the next 24-48 hours is to extubate her, or get her off the ventilator. To do that they will continue to wean her off the oxygen and get her to wake up from the sedation. Once she is more aware and awake, they will try to extubate her again.

Right now, she is starting to move her arms and legs, but she is only partially opening her eyes for a second or two. She looks peaceful, but beneath the angelic surface is our little warrior fighting and battling to overcome her condition and all that she has already endured in her young life.

Aside from the "failed" extubation, Zoe's chest tube and catheter were removed, which is a step in the right direction.

Please continue to send positive thoughts and prayers Zoe's way. She is a tough cookie, but could use all the help she can get.


Zoe has been told of the many family and friends on her side and cheering for her. I'm sure she feels the love and support and will soon be back on the upswing.

Zoe's Daddy

She's all stitched up

Dr. Spray told us yesterday that the 12-24 hours after surgery are the most critical. We are now approximately 19 hours post-surgery and Zoe is responding well. She is sedated, paralyzed (by a paralytic), and on a ventilator, but in an odd way she looks strong and you can see the fight in her eyes.

After surgery, she was on 100% oxygen, but by this morning she was down to 40% oxygen, which means her lungs are beginning to adapt and work on their own.

Because her vitals held strong throughout the night and she responded the way she did, Dr. Spray closed Zoe's chest this morning. He explained that once the chest is closed, the plan for the next day or two is to wean her off the ventilator and off sedation.

Stacey, one of only a handful of adult patients in CHOP, will be discharged this afternoon. The hospital has 5 parent sleep rooms; we submitted a request for one of them this evening. We won't know if we can sleep there, however, until 5:00 or 6:00 p.m. If not, then we'll sleep at the rental house but spend as much time by Zoe's bedside as possible before we leave the hospital for the night. Stacey was told to take it easy and rest, as much as possible, over the next several days. It will be a challenge, however, to convince her to rest and continue to heal herself so she can gain strength and endurance over the next several weeks, which we'll need once Zoe is off sedation and active.

Please continue to send positive thoughts, as Zoe fights her way through the next 24-48 hours. We are confident in her strength and resiliency.

Zoe we love you and we are so very proud of all you have accomplished already. We are inspired by your fight and determination and we will continue to support you as you persevere through your battle with HLHS.

Isn't this the toughest little lady you've ever seen?:

Surgery = Complete. Prognosis = Hopeful.

We received a call that the surgery was completed, and they were closing Zoe up and taking her off the heart bypass machine. A few minutes later, when we reported to the cardiac intensive care unit, as we were told, we learned that Zoe's oxygen levels were too low, so they had to go back in and put her back on the heart bypass machine. Essentially, an artery, which was connected to the surgically implanted shunt, became kinked, once blood flow was re-introduced to the anatomy.

We talked to Dr. Spray who indicated that once he put a patch on the artery, to prevent further movement, the surgery went as expected. He said the real critical period is the next 12-24 hours.

Because of the revision, Dr. Spray decided to leave Zoe's chest open overnight. That way, if they need to gain access to the heart, they can get in quicker. Dr. Spray's hopes are to close Zoe's chest tomorrow morning.

Many of you already know the intimate details of HLHS, but for those who don't the following illustrations helped us:

Normal fetal heart:



HLHS heart (notice the tiny, non-functioning left-ventricle (LV)):



The HLHS heart, following the Norwood procedure:



For another bit of trivia, the shunt that Dr. Spray surgically implanted is called the Blalock-Taussig shunt, and its invention was dramatized in the HBO made for TV movie Something the Lord Made.

After we spoke with Dr. Spray, Zoe's cardiologist came to our room and told us that Zoe's oxygen sats post-operatively were not quite ideal and that her case is a bit more "worrisome" than a textbook case. In the same breath, she stated that Zoe had "no pre-operative" issues which is positive.

As soon as we were allowed, we went to see sweet Zoe. She was lying in her CICU bed on medications, including a paralytic. She has a chest tube, several atrial lines, is on a ventilator and 100% oxygen. We were saddened (an understatement) to see her like this, but feel that she is strong and will fight during this critical time period. Please send your positive thoughts and prayers to CHOP as Zoe is in need over the next 24 hours.

Thanks for following, sorry the update is so late but we've been given a ton of information and been under a lot of stress today. Not to mention mommy is still recovering from giving birth to our sweet babe less than 24 hours ago.

We love you Zoe Madison. Stay strong and fight, fight, fight. We're here fighting right along with you and can't wait to take you back home to Arizona.

Well, the anesthesia worked....

We just received a call that Zoe fell asleep, from the anesthesia, without any problems. Once she was under, they inserted several lines and IV's. Dr. Spray, the man with the magic hands, has already opened up her chest and is getting ready to put her on the heart bypass machine.

We should have another update in about 40 minutes.

Thanks again for all the well wishes and positive thoughts, it means a lot to our family.