Life is Good

Save our coast!

Cute Who Dats!

Thanks and love you Nonie!

Ducky, are you listening to me?

It's hard to believe that she's now 4 weeks post-op. She's really doing great. We keep waiting for something bad to happen, but so far so good. My mom (thanks!) came and stayed for a week because we were nervous about going back to work. Thankfully, everything has been uneventful. Her incision looks great and she's gaining weight at a record pace (at least for her)! She now weighs 16 lbs 4 oz! She has gained almost a pound in one week. She's clearly eating like she's never been fed before, but as everyone knows from the 2o gallons of breast milk in our freezer, that's not true! She is so much more active and you can tell she feels so much better. Everyone warned us that she might lose milestones after her surgery, but Emmie has once again proven everyone wrong. Not only did she not lose anything, but she's now able to sit unsupported! Only problem is, she's very curious and when she wants to go somewhere, she does- head first.

Emmie went to her first Saints game! She was a cute little Who Dat in her new dress. She thought the game was fabulous and was actually better at following the game than Liz. Emmie clearly already has a deep appreciation and knowledge of football. We've been working diligently on this! We are now working on the words to Who Dat and the Auburn fight song. I am predicting her first words will be Who Dat or War Eagle!

Amy

Random pictures from Boston and first days home

Saying bye and thanks to our sweet NP Marcy

Thanks Laura!

Thanks Liz!

ready to blow this joint!

Emmie's first boat ride

Emmie liked the big bed at the hotel much better than the

zoo cage at the hospital! And so did her moms!!!

She liked the view from the hotel

Hanging with mommy back in NOLA!

trying out her high chair

Hard to believe she's big enough for this!

We have enjoyed our first full day back in NOLA. We went to our usual breakfast place and then to the farmer's market- our usual Saturday routine! We then ate lunch at Anna, Rajiv, Shalin, and Seine's house and caught up with them. We stopped by Hansen's for a snoball and are now relaxing at home. It's so good to get back to being normal. Emmie is doing great and it's been so good seeing all of our friends. Sorry again for the lack of pictures last week, but I hope this makes up for my laziness. She's so pink!

ag

Home Sweet Home!

We are finally home and I'm not sure we've ever been more excited to see this town! We are all exhausted and have to adjust to central time again, but those are minor details. Most importantly, Emmie is pink and feeling great. It's crazy to see how much better she feels. She is much more active and vocal. She's found her loud voice and likes to practice using it!

I'm sorry we gave some of you a scare last week with the lack of posts. We didn't have very good access to internet which made things difficult. I promise I will post more pictures tomorrow- just too sleepy tonight!

Thanks again for everyone's support! You all will never know how much each thought, text, email, prayer, etc. meant. When things were really bad, all of you made it better. I can't wait for all of you to see how great Emmie looks and feels!

Amy

Ready for NOLA

We have all had more fun than we expected in Boston this week but we are past ready to be home. Emmies check-up went great- in fact when we asked her cardiologist if he agreed that she would be able to live a normal life, he said "definitely, and so far she's supra-normal.". He's pretty straight talking so we took this as great news. We will be back September 23-24 for a heart cath where they hope to dilate her left pulmonary artery but he seems cautiously optimistic that this will work.
Tommorow we are flying home and will post some pictures when we have Internet access again. It's hard to beleive how much better Emmie feels than when we left. Thanks to everyone in Boston for making this such a great trip!

Discharged

Just a quick note to let everyone know we have escaped the hospital!! We have checked into a normal hotel with a great view of the river and are going to eat at a regular restaurant! Pictures later but we are so relieved.

A sight for sore eyes....

Emmie is having a fabulous day. She had her lung scan (results are pending) and taken a few field trips around the hospital. In the pictures above, we were singing and dancing to Proud Mary! Emmie really likes Tina Turner. You can really tell she feels so much better. She's laughing and cooing. She's won the floor over and everyone stops by to see her smile. She even has the construction workers talking about how cute she is. Little do they know, she'll be locked up for awhile!

It's hard to believe that this time last week we were sitting on the 3rd floor and Emmie was on bypass. We were wondering if we'd ever hold her again or get to see that cute smile. It's crazy to think that was only one week ago. We are so glad she's bounced back so quickly and is feeling so well.

amy

What a difference a week makes!

Smiles

Jail break- we visited the garden today!

notice no oxygen- well at least no supplemental oxygen!

It's amazing what a difference a week makes! We said from the beginning we had to just put our heads down and gut it out. It was certainly a horrible few days, but this smile makes it all better. She is off supplemental oxygen and her O2 sats are in the upper 90s! She is so pink- it's hard to believe how blue our little smurf was prior to her surgery. They have changed all of her meds to po (by mouth) and are now tapering her propanolol. She will probably go home on Lasix for a few weeks and then stop it later.

The tentative plan is a lung scan tomorrow or Thursday and an echo on Friday. If all goes well, we may be discharged Friday night. The doctors want us to stick around next week so they can see her one last time. We have an appointment with Dr. Marx on Thursday August 12th and we fly home on August 13th (Friday). Usually, I would be creeped out by flying on Friday the 13th, but I can't wait to get home to NOLA!

Emmie did well picking August for her surgery. It was a nice reprieve from NOLA's heat/humidity; however, I have discussed with her that we will be happy to take her on vacation rather than surgery next summer if the heat was getting to her.

Amy

To the floor!

Emmie is already making A's on her report card. Check out the 100% O2 sat!

Snoozing in the ICU

Frog face

Smiles for everyone

One last ICU rounds and checkup with our favorite Dr. Allen!

As you can see above, Emmie was doing so well today that she was kicked out of the ICU! We are now on the floor and plotting our escape out of the hospital all together. Emmie's blood pressure and heart rate are much better. She still has a slight O2 requirement because of all of the fluid on her lungs but that is getting better and better everyday! She lost almost a pound overnight in fluid. Her ileus has resolved and she feels so much better. She is smiling, laughing, and winning the hearts of all the nurses. She was referred to as the cutest baby in the ICU and on the floor so often, it went to all of our heads- but it WAS true! Nurses came from all over to check her out and then promptly agreed with their colleagues that she was indeed the cutest and sweetest baby around.

The plan for this week is to wean her oxygen, get an echo and lung scan to make sure everything is going well, taper her off the lasix and propanolol, and then hopefully make our move to the exit signs. If all goes perfectly, we will be discharged Friday. They want us to stick around for about a week or so and see them in clinic next week given Emmie's history of infection last time. We are certainly ready to come home, but at least we won't have to spend that last week in the hospital.

ag

Emmie smiles- on the road to recovery

Emmie walking around the ICU and planning her escape!

Chatting with Bobble

Making eyes at Nonie

Finally, a smile.

Chillaxin in her new "suite" watching TV

Last night was a fabulous night! Emmie smiled. On a normal day, that can light up your day, but after this week, words can't even describe what seeing that little grin does to your heart. We are well on our way to recovery now. She is starting to feel better and act more like Emmie. She's eating better and her ileus is finally resolving. We took a stroll around the ICU today and plotted our escape. Though you try not to, sometimes you think, why Emmie? But if you look around the ICU, we realize how lucky we are and how much worse it could have been. It certainly puts things in perspective. We are so thankful that Emmie has had a successful surgery, an uneventful post-operative course and look forward to getting her home. We'll be back one day, but we will enjoy and appreciate every second until that day.

Also, our sweet nurse Maureen managed to have us transferred into a private room that actually had 4 walls. It will be referred to from this point forward as the Ritz Carlton. Prior to this, we were sharing a 3 bed pod in the ICU- not much sleep or peace going on there. The Ritz has its own bathroom (so we didn't have to trek out to the waiting room) and did I mention 4 walls with no other people in them? It's also an isolation room so it has this constant white noise. We all slept like rocks last night.

Today, Emmie continued to make progress with her blood pressure, heart rate, diet, and GI activity. Tomorrow, they should remove her central line and we should go to the floor. Most importantly, she's smiling and feeling better.

Amy

Dr. del Nido checking out Emmie post op day 2

Emmie is discussing the events with her favorite lovie

Stop! Leave me and my buddha belly alone!

Aunt Marsha

Post op day 1

Dr. Marx- Emmie's cardiologist

Preop

Emmie had a better night last night- much more peaceful! She has a slight ileus (bowels are slow) so she would feel much better if she could only have a really big poo! Overall though, she is doing well. They are going to taper her bp iv meds off today and hopefully take out her central line. We will probably be in the ICU at least until tomorrow and possibly Monday. Everyone has been great. The first picture is Dr. del Nido- the miracle man. He is known for making something out of nothing and we are extremely grateful for Emmie's excellent repair.

I'll try to take more pictures and post them as well. I need to take some of the grandmother's who have been so supportive and helpful and allowed us to take much needed breaks- Marsha you too! We appreciate them and Marsha making the trip to be with us. We also appreciate everyone at home who we know would be here if they could. Thanks for all of the support.

ag

Baby steps

Emmie has had a much better morning. She is much more comfortable and has not had any further fevers. She's still a little puffy, but she is looking more and more like Emmie. Her BP and heart rate are still elevated, but they have weaned one of her blood pressure drips and are slowly transitioning her to oral BP meds. This is to help decrease the work that her right ventricle has to do. Before her surgery, it was doing a lot of work and it just needs a little rest. She should not have to be on the meds for too long and certainly not permanently. She's eating, pooing/peeing and watching tv extremely well. The attending cardiologist and her surgeon are very pleased with her progress and think that she's ahead of schedule. This is good news for us. We have to remind ourselves that this is a teaching hospital and not to be concerned if the first year fellow says something silly. Yes, I know we were residents once and I apologize if I gave anyone a heart attack for worrying about normal stuff.

Thanks again for all of the emails, texts, thoughts, prayers etc. I'm sorry I don't update more often. The wifi doesn't work in the ICU and it's hard to leave her side.

Amy

Emmie's breathing tube came out last night. At first she had a hard time without it but after a bit she did great. However, she did have fever overnight and we have had some trouble with her heart rate and blood pressure. They started a new drip for that today and will begin trying to switch her to oral medicine today. No clear answer on the source of the fever but she's on antibiotics. This morning her fever broke and she's started to get comfortable. She was even able to start eating a little, which of course is her favorite hobby. We'll post more updates when we can.

Progress

Chest tubes are out and the ventilator is getting turned down. Hopefully the breathing tube can be out tonight. Emmie looks great and her nurse is very impressed at her skill in using up diapers. Funny how that's so much more desirable in babies than adults. But seriously good urine output is a very good sign!

Doing well

Everything so far looks good. Emmie did great through the night and this morning. She's been feisty already. They have been trying to keep her sedated but she's already waving her hands and feet. Hopefully today she will start to lose some tubes- first one in her left atrium and then her chest tubes. Maybe, just maybe, she'll lose the breathing tube later tonight. She's puffy, but she's amazingly beautiful pink. We will try to get some pictures up soon. The surgeon and the cardiologists are all very pleased and so are we. Thanks again for everyone's support.

:)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We just spoke to Dr. del Nido. He was able to reestablish flow to the left pulmonary artery and fix the ventricles and place a really large conduit! I can't tell all of you how much your thoughts and prayers mean to us. Keep them coming! She will certainly have ups and downs, but this hurdle is at least over. We will post pictures of her beautiful pink smile as soon as we can.

Thanks and love to you all!

Amy, Liz, and pink Emmie

Off bypass!!!!!

She's off bypass and stable. We expect to see the surgeon in about 30 minutes. We don't know yet what type of repair he made but there's no excess bleeding and she's doing well. We are so grateful for that- even if she has to be blue for a while longer. We love our little smurf.

We just got another quick update. She's still on bypass but hopefully is coming off soon. She's stable. The nurse expects another update in 45 minutes. No word on what repairs were made.

Update

We just received another update- she is still on bypass and is doing well. She has been stable the entire time. Hopefully, this means they were able to fix the pulmonary artery and do the conduit with the complete repair. This is what we are choosing to believe. We will have to wait and see. I must say, it's much more fun to be the surgeon than the patient's mom. Our stomachs are in knots and each time someone comes around the corner, I always check to see if it's an update. I may have whiplash before it's all over.

Amy

Bypass

They have finished the dissection and she is now on the heart bypass machine. They will start the repair now. Thanks for the thoughts and prayers. We are praying they can reopen the left pulmonary artery and place the conduit without difficulty. She's a tough little girl.

Amy

update

We just heard from the OR nurse and all lines, positioning have been completed. They have now made the incision. Good thoughts.........