Back Where We Belong

Ahhh...home! I have never been so excited to walk in my door. After eleven days in Palo Alto, we finally made it home, albeit a little delayed for Joe since they oversold the flight and he had to go through San Fran and Phoenix to get home--oh well, HELLO free voucher!

Anyway, the day after we arrived home, Joe's Mom and her boyfriend drove out to spend Christmas with us. We are looking forward to a lazy week of sleeping, eating, playing and gift-opening. Just need a little snow here so it really feels like a Colorado Christmas.

E is doing great! The first couple of days were rough--he was very clingy, very irritable, and he couldn't sleep. We were up 5-6 times with him each night. Sometimes he woke up crying, as if he had a nightmare. Sometimes he woke up searching for us, like he didn't know where he was. And sometimes he woke up famished--nothing like a pop-tart at 3 o'clock in the morning :) He's getting much better though. Last night he only woke up once or twice, and that I can live with.

He seems genuinely thrilled to be home with his toys, his cats, his bed and his freedom. Thank you again for following us through this difficult, yet very successful, journey. Much love to you and your families this Christmas season! XOXOXO

Woo Hoo!

We are outta here! We are just waiting for our nurse to do a few things (remove his IJ line, give him meds, and administer an H1N1 booster) and then we are going home! Well, at least to the hotel until tomorrow when we fly home. Thank you to everyone who has followed E's story and prayed for him. We will give another update tonight or tomorrow to let you know how he is adjusting to life "on the outside" :)

It got better :)

When I called Joe this morning, he sounded happier than I have heard him since Emmett's surgery. At 3 o'clock in the morning, they had to move E to the step-down floor due to bed space issues. We went from a loud, bright, crowded 7-bed room that can only be compared to a casino to a dark, cozy little room with just one other roommate. Joe said that as soon as they got him out of the ICU (not even to his new room yet), he fell asleep and dozed for hours. Sleep has been one of the biggest issues here. Since he is such a light sleeper, he had only been able to sleep about 6 hours total the previous two days. He was exhausted and frustrated...the move today was a HUGE step towards recovery.

There is still one underlying medical issue. He has a small pneumothorax (collapsed lung) that isn't going away. They have taken chest x-rays everyday to monitor it, but there has been no improvement. They thought the chest tube would basically suction out the air pocket that has formed, but after several days, it hadn't. The surgical residents/fellows came by and said they were going to leave the chest tube in again today. Joe and I didn't agree with that decision. Granted, the alternative isn't great. If the pocket grows, they will have to go back in with another chest tube to correct it, but it seemed to us that the chest tube he had in wasn't doing its job anyway, so why not be a little proactive? I don't think the team agreed, but as luck would have it, Joe ran into Dr. Hanley (his surgeon) on the elevator on his way out this morning (we have NEVER just "run into" Dr. Hanley). He asked Joe about E, Joe explained that the tube was still in, Dr. Hanley looked surprised that it was, and lo and behold, two hours later the tube was out. Ahhh, the power that man yields :) We love him!!!

They repeated the x-ray. The pneumothorax is still there, but it didn't get any bigger. So the current plan is to take another x-ray tomorrow and they will make a decision about our next step from there. They are putting him on oxygen tonight to help the process along. For the time being though, he is so much happier. I got to take him for a wagon ride around the floor today (about 50 laps) and when Joe got there, we went to the playroom. It's amazing how choo-choos, blocks and cars can lift a 2 year old's spirits. Here are a couple pictures of some happy moments from the last two days.

And, by the way, a big shout out to E's team of nurses, doctors, PAs, RTs, and surgeons from the CVICU. They took great care of him and we wouldn't be this close to going home without them. A shout out also to E's amazing nurse, Christine, at 3 West today, who actually brought me a piece of her lasagna and a soda when she noticed I hadn't eaten anything by 3 o'clock today. Let's just say Emmett is a handful now that he's awake! It's totally worth it though, after 6 days of waiting, we finally got hugs today and even a couple small smiles...our little guy is getting back to his old self.

Hugs and kisses from Big, Bad E!

Does it have to get worse before it gets better?

It's been a bad morning. Let me first say that Emmett is fine physically. He is improving everyday. I guess I can't ask for much more than that. Unfortunately, his spirits are completely deflated. He is unhappy, uncomfortable, confused and just...sad. It is so hard to see my vibrant, active young son just laying there, looking up at me with these eyes that beg for mercy. Every time medicine is delivered to him, he stiffens up and starts shaking--just by seeing the bag. He has major people anxiety. When the team of doctors came around this morning for rounds, he absolutely broke down, crying and cowering in fear. Not to mention, he is sharing a nurse with another patient that requires about 90% of her time. So, if it weren't for Joe and I being here, who knows how long he would sit in pain or hunger or in a wet diaper. It is not the nurse's fault, she is great, but it's just too much for one person. I voiced my concerns and I think that this afternoon will be better. On the positive side, one of our favorite doctors here, Dr. Cisco, is putting some things in place to help him feel more at home--a pain management team is coming to talk to us about alternate forms of pain relief (since it takes me 30 minutes to give him any meds orally), he is advancing E's diet to include non-clear foods (thank goodness!), and he is going to TRY to convince the surgical to take out his chest tube which causes so much discomfort. In addition, E's nurse is trying to get some toys for him to play with and the therapy dog to come pay him a visit. I know it has only been 6 days, but it is just so hard to see him like this. I keep telling myself that we're doing the right thing, but trying to get a 2 year old to buy into that isn't so easy.

Sorry for such a depressing post, but this is what is on my mind and my heart. I know that in a couple weeks, we will be celebrating Christmas and E's birthday and all will be back to normal, but for now, it's heartbreaking. Hopefully, my post tonight will be much more positive. Hugs and kisses from Big E to all of you!

The Good, the Bad, and the Adorable

The Adorable part is easy--that's Emmett! He is so stinking cute and has easily won the hearts of all the doctors and nurses here.

The Good: Physically, E is doing very well. His numbers look good, his left ventricle is functioning well, and he is off nearly all of his meds. They are monitoring a couple things--some fluid that needs to drain and his left lung, which is a little collapsed due to another pocket of air that has formed--nothing serious and nothing to worry about.

The Bad: He just isn't our boy yet. Though he is awake (and has been since about 8:00 last night unfortunately), he isn't really interacting with us. He makes very good eye contact, but he is extremely leery of anyone that comes close to him (not that I blame him). He won't talk or move around much. He lets me hold him, but doesn't seem very excited about it. I know that this is all to be expected, but I can't help being sad that he is so distant. I just hope that someday he realizes that we are doing all of this out of love.

The Bright Side: We are here...with our baby. That is not the case for all of the families here. Some have to work during the day and come see their baby at night. Some have other children to take care of at home, so they can't be here to be with their little one. The more time I spend here the more I thank God for our many blessings...insurance, a stable income, a company that is willing to let Joe take all the time he needs here, and the most amazing and supportive family and friends that anyone could hope for. Thank you for everything.

Happy, happy, joy, joy!

Here is Big E, sitting up like nothing happened. Granted, he doesn't look very happy yet, but he will be soon. Joe and I are ecstatic...what an amazing little boy we have.

And the Good News Continues...

They just repeated Emmett's echo and chest x-ray. Both looked great! He no longer has the air pocket by his lung. HIs left ventricular function is much better. And, as an added bonus, his tricuspid valve insufficiency has improved. They are taking him off the dopamine tonight and some more meds tomorrow. Things are rolling now!

E is in pretty good spirits. He's not talking or playing yet. No smiles (then again, what has he had to smile about?). However, he has been snuggling with Momma, watching movies, reading books and keeping some liquids down. Big progress for one day! We are so proud of our Big E and so excited to take him home in a few days!

Ahhh...Bliss!

Last night Joe came to relieve me about 7:00. Emmett hadn't yet woken up enough to hold him, so I conveniently managed to stick around until I could do just that. He started fidgeting and wimpering a bit, so I immediately informed the nurse that he was asking for his Momma. After about ten minutes of arranging chairs, wires and tubes, I was able to hold him in my arms for the first time since his surgery. It was heaven! He fell asleep in my arms almost immediately, and I just stared at his sweet little face for an hour or so until I couldn't keep my eyes open anymore. I went back to the hotel, happy and satisfied that I had gotten some snuggle time in with my favorite little guy.

Joe said that he slept all night, with the exception of waking up once to drink some water (which he promptly vomited right back up). So today our goal is to 1) ween him off more meds, and 2) get some clear liquids to stay down. He also has a little air pocket in his chest which they are observing. Hopefully, it will go away on its own. Worst case scenario--he'll need a new chest tube. Everything else has seemed to just work out, so I'm optimistic that this will too.

Thanks again for the prayers--we are unbelievably blessed!

It's a Brand New Day...

Figuratively speaking, of course. At 5:50 tonight, the RT removed Emmett's breathing tube. This was greatly appreciated by E along with myself and the nurses who had to practically sit on him to stop him from extubating himself. As soon as they took the tube out, he rolled onto his side, put his baby "Li-Li" in a headlock under his arm and went back to sleep. His numbers look good, his meds are being weened off, and he gets to start drinking clear liquids in a few hours. Most importantly, his Daddy will get to hold him in a little while. I am MORE than a little jealous that I will not be the first one to snuggle him post-surgery, but I've been here for 14 hours now and I need to go catch a little shuteye while the gettin's good.

We could not be happier with Emmett's progress. I am in complete awe of our son's courage, strength and determination. Just looking at him right now, I am confident that he can handle whatever life (and his special heart) throw at him. He is my hero!

Earlier today...ahhh, success! I told you I'd get on my belly somehow, suckers!


Post-extubation...so glad to get that breathing tube out of my way...now I can really breathe :)

Lookin' Good, Mr. E!

Joe took the graveyard shift last night and reported that it was fairly uneventful again. He did wake up a few times, but was soon either comforted or sedated back to sleep. Joe is not a fan of overmedicating so I think he and the nurse had a disagreement or two (I know what you're thinking...not Joe?) :) Emmett is lucky to have such a doting, loyal Daddy at his side.

He looks good today, no longer dehydrated, though he does have a little fluid on his lungs. They don't seem too concerned with this though, so they are just keeping an eye on it. They have ordered an echo for today, but it is Saturday and things tend to run at a snail's pace around here on the weekends. So...it will probably be done later this afternoon. They will then decide if his left ventricle is ready for extubation yet. Once the breathing tube is out, I get to hold him...and then the fight is on. Something tells me E will not want to spend one more minute than necessary in his bed. And that is fine with me :)

Everyone here has been wonderful, from the surgeon to the doctors to the nurses and RTs. We realize how lucky we are that Emmett is in such good hands. Several of you have requested a photo of Emmett, so I am posting one--notice Li-Li tucked safely by his side. You may think it looks a little scary, but we are thrilled with how he is doing. Once he is able to open those big, puppy dog eyes, I will post some new pictures too!

Love to all, especially E's great-grandma Norma who had knee surgery the day before E had his operation. We are thinking of you and love you loads, Grandma!

Good Morning!

Joe and I took the nurse's advice last night and went back to our hotel for a little shuteye. He had a relatively uneventful night, with one exception. The nurse said she turned around once and saw a little butt sticking up in the air. Yes, Emmett had finally managed to flip over to his stomach--his preferred sleeping position. Unfortunately, he can't stay like that with all of the tubes and wires in his belly. So they gave him some more meds and it was sleepytime the rest of the night.

The doctors just came by on rounds. They are happy with his progress for the most part. He is a little dehydrated so they are giving him more fluids to combat that. He also had a couple dips in his heart rate upon waking. The attending cardiologist seems to think he needs a little more time on the breathing tube--after all, we are asking his left ventricle to do a lot more work than it was doing just 24 hours ago. They took an echo though and are going to go over the results before making a decision about extubation. They should have a plan in place later today.

E has developed quite a reputation in the CVICU already. He is known for 2 things: 1) his ability to go from 0 to 60 in an instant, and 2) his eyelashes, which I'm sure he will use to charm everyone once he is allowed to wake up. He looks like a giant compared to the other babies in his room, causing everyone to do a double-take when we say he isn't even 2 yet :) Yes, we realize how fortunate we are to have such a big, strong and seemingly healthy little boy.

Thanks again for all of the good wishes. Keep up the prayers, they are working! Much love from Cali...

More Drugs, Please!

For Emmett or I--you take your pick. E was supposed to stay asleep until tomorrow when they take his breathing tube out, but he seems to have other ideas. He woke up the first time about three hours post-op, and he has woken up several times since. He kicks and thrashes, trying to pull out the wires and tubes. It takes the nurse and I (and sometimes a second nurse) to hold him down. I knew he was strong, but on sedation drugs, really??? I am so thankful that he is tough enough to put up a fight, but I also wish he would get some rest already. They keep increasing his meds-he's on a nice cocktail of dopamine, fentanyl and versed right now, but apparently it's not enough for our Big E--what a little fighter!

All is well. Joe is back at the hotel getting some sleep, and I'm sticking by Emmett's side waiting for the next round of wrestling :) Thanks again for all of the prayers and kind words. I will update again tomorrow--with a picture, I promise.

Finally!

We got to see our little man in the CVICU. He looks amazing--a little pale and full of wires, but we think he looks absolutely beautiful! They are keeping him asleep until they take his chest tube out tomorrow, but I have a feeling that he can hear us talking to him. Joe and I are going to pull shift work while we're here-Joe drew the short straw, so he gets the night shift :) There is no way we're going to risk him waking up without one of us here.

The surgery seemed to be a huge success. The only complication was that his heart rate spiked in the OR and again when they brought him to the ICU. They have an EKG machine hooked up to try to catch the arrhythmia and diagnose the problem. He has a wonderful, attentive nurse at his side, and of course, two very protective and proud parents, so we know he'll be fine.

I'll post a picture later, but I'm going back to see him now. I miss him already :) Thanks for all the love and support for our Big E!

Woo Hoo!

Dr. Hanley just came to see us...E is almost out of surgery. It went as well as we could hope for--they equalized the pressure, so NO MORE TIGHTENINGS! Dr. Hanley thinks that, if all goes well, we'll be back next Nov/Dec (always during the holidays :) for E's double switch. They are making room for him in the CVICU right now, so we should be able to see him in about an hour. Thanks again to all of our friends and family for the much needed and very effective prayers. Hugs and kisses from CA and our Big E!

The Waiting Game

Dr. Hanley came back about twenty minutes ago to speak with us and explain the surgery. Unlike the last time, we didn't have that many questions, because we know exactly why we are here and what is being done. Much like the last time, I felt instantly better after having spoken with him. He has a calming presence and great confidence in himself and his team. Now, we wait...
should take about two hours. We'll keep you posted.
Here is a picture of E right before anesthesia took him. He's trying to make a break for it :)

Cute Story

Sitting here waiting for the surgeon, I was thinking about something cute that happened yesterday. While we were in the clinical lab waiting for E's blood to be drawn, there was a three year-old boy sitting in his wagon crying. He, unlike Emmett, obviously knew what was coming. Emmett looked so distraught and didn't understand why this little boy was so sad. He walked over to him, took a sticker off his shirt and gave it to the little boy. The boy was so excited that he just lit up and immediately stopped crying. Pleased with the reaction, Emmett started taking off all of his stickers, including his visitor's badge, and handed them to the boy. They played together for a little while while I talked with the boy's Mom. It nearly brought me to tears, and then...

The 2-year old came out in Emmett. He decided to take those stickers right back. We all laughed and the boy took it well. Emmett decided instead to give him a sucker, which seemed like a good deal to both of them. :)

And we're off...

We just handed Emmett over to the anesthesiologists (this is the hardest part for me). They were wonderful though, and we know he is in good hands. We are now waiting for Dr. Hanley to come speak with us before the surgery. We'll let you know when they have started. All prayers welcome!!!

Pre-Op? No Problem!

Today was Emmett's pre-op day at Stanford. We were prepared to settle in for a long day since it took almost 8 hours before his last surgery. Today, however, all the stars seemed to be aligned for us. We were in and out in four hours, with an echo, EKG, chest x-ray, physical, consult and bloodwork under our belt. Emmett was such a trooper! He was an angel for the echo and EKG (after a little bribery in the form of a sucker and some fish stickers). He then tolerated the chest x-ray, but did let us know that he wasn't happy about it. We then met with one of his anesthesiologists, a physician's assistant and a nurse practitioner--all women and all rendered powerless by E's big, brown eyes. Oh yes, it was as if he knew they held some part in his fate at this hospital, so he turned on the charm--fluttering his eyelashes and smiling his big, toothy grin at their every word. They were wonderful...they answered all of our questions and seemed supremely confident that his procedure would go well tomorrow. Finally, the last stop of the day--the lab. Let's just say there is a reason they save the bloodwork for last. It did not go so well. The first needle prick was fine--few tears and no screaming. Unfortunately, his blood stopped flowing too soon, so they had to give it a second go. This did not settle well with Emmie...he screamed and cried and sobbed "No, Mommy....pweaze, Mommy" over and over and over again. I felt horrible. Like the worst Mommy in the world. Bad enough, in fact, to promise ice cream as soon as we left that terrible lab. And, true to our word, Joe and I took E out for a big, old scoop of ice cream. We are now back at the hospital and Emmett is sleeping (and snoring) soundly on the bed. YES! One day down...

Now, the best news of all--if all of Emmett's tests come back okay (which we believe they will), he is scheduled to be the first surgery of the day tomorrow--yay!!! If you will recall, last time they didn't get to start his surgery until the evening, so it was a long day of waiting, waiting, waiting. Hopefully, by lunchtime tomorrow, he will be settled into recovery, and we will be holding our beautiful and brave little boy's hand. We check in at 6 a.m. tomorrow and we will post an update as soon as we get a chance. Thank you again for all of your prayers and positive thoughts--they mean more to us than you will ever know. Hugs and kisses from Big E!

Californ-I-A

We made it safe and sound out to California yesterday. After taking Emmett to meet Santa for the first time, we got carry-out and settled into our hotel bed to watch some bad Christmas movies. We are all doing very well! We are getting ready to leave for a long day of pre-op that includes an echo, EKG, chest x-ray and bloodwork. E is a little trooper though, so we know he will do fine. Thanks for all your positive thoughts and prayers. We will update more tonight!

Leaving a Comment

Hello, family and friends! Some of you have mentioned that you can't leave a message on my blog. I took some steps to make that easier for you, because I LOVE reading what you have to say. If you want to leave a message, just click on "Comment" under a posting (it will probably have a number in front of it, like "2 Comments", for example). This will bring up a blank text box to type your message into. Once you are finished, you will need to identify yourself by typing in your Google account OR you can simply select "Anonymous" and then submit. If you choose anonymous, please make sure you include your name somewhere in your message, so I know who is talking to me. Finally, it will ask you to type in a word for verification. This is just to reduce spam.

Now try it. Right now. Or I will cry. No pressure...

Make sure to check in often next week as Mommy will be updating from Lucille Packard in CA during my surgery. Hugs and kisses to you all!

She's Here!

Charlotte Jane was born at 6:55 p.m. on December 2, tipping the scales at 4 lbs, 9 oz. Looks like she's going to be a petite little thang like her Momma! Congrats, Auntie D and Uncle Chad. Can't wait to see pictures!

Auntie D's Big Delivery

Today, my Mommy's best friend, Dana, is going to the hospital to have her second daughter. Part of me was hoping she'd have a boy who could be my best buddy, but she does make REALLY cute girls ;) So, they can either be my best buddies OR my future prom dates (it's nice to have options). Mommy says that Dana has had a tough pregnancy, so we're praying for a quick and healthy delivery.

Auntie D, if you're reading this, I love you and I can't wait to meet my new best friend!

Did I Have Fun?

Just look at my face, and you be the judge!

Me and My Buddies!

I LOVE THEM TOO!

Me and My Family!

I LOVE THEM!!!

My First Wedding...

well, it wasn't MY wedding...yet. We went to my cousin Brittany's wedding in Illinois. I'll be honest...I didn't see a lot of it. I was getting super excited watching everyone walk down the aisle. And what do I do when I get super excited? I yell really loud. I wasn't crying, I was cheering for them. Even though Mommy and Daddy thought it was cute, they thought I might be a "distraction" during the wedding. So instead, Daddy and I went outside and ran laps around the church for a whole hour. I was one hot mess by the time everyone came out of the church!

A Two-Week Whirlwind!

Two weeks ago, Mommy and I took a plane ride back to Illinois and Missouri to see our family (Daddy drove in a week later). We spent time with all my grandparents, aunts, uncles, cousins and a few friends--they spoiled me rotten! Even though it was exhausting to drive from house to house...to house to house...and to live out of a suitcase for two whole weeks, it was so worth it! I got to go to my big cousin Brittany's wedding, bake cookies with my Grandma Donna, eat a big old Thanksgiving dinner, and so much more. I figured that I had a job to do while I was there. Since my family doesn't get to see me all that often, I had to pour on the charm. I gave out a ton of hugs and kisses, said LOTS of new words (including everyone's names) and posed for countless pictures. And when it was all over, I handled the 14.5 hour car trip back home like a real champ. I didn't even fuss once! Mommy and Daddy kept saying what a good boy I was. Maybe I need to start acting up--I don't want to set the bar too high. I hope you all had a beautiful and fun Thanksgiving. Keep on reading, because I'm going to try to catch you up on our big adventure!