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.........

Surgery

Emmie went to the OR about 45 minutes ago- about 9:15 here. She was grouchy all night and tired from the long day yesterday but rode around happily in a stroller this morning on the floor. A nurse will call out to us this morning to let us know when they actually start making the incision- first they will place lines and position and that takes a while. We will put up a note when we hear. Please keep all of us in your thoughts today.

Surgery

Sorry for the lack of update last night. We didn't get back to a room until around 10 and had to get Emmie to sleep so she would be ready for this morning.

On the cath, they found that her left pulmonary artery (which was small at her initial surgery and had to be patched in hopes that it would grow) has not grown and in fact is now stenosed (or narrowed). There is a little blood flow through it but it wasn't big enough to pass a guide wire through in order to dilate it. That was discouraging b/c it could mean that they would have to approach the surgery in a different manner. We met Dr. del Nido who will be performing the surgery and he was very optimistic that he would be able to bypass the stenotic segment and do the expected repair. We are choosing to be optimistic and look forward to good news early this afternoon. Emmie's surgery will start at 8:30 am with line placement, etc. The actual surgery probably won't start until 9:30. It should last 4-5 hours and hopefully we will be able to see her mid-afternoon. They will update us throughout the surgery and I will try to keep all of you updated as well. Sorry to worry everyone yesterday, but I didn't have a way to update and we were pretty stressed. Thanks again for all of the thoughts and prayers. We appreciate each of you and please send extra ones this morning.

Amy

Cath

Emmie's cath is done. She should be waking up soon. We haven't seen her yet but wanted to put up a quick update. She was stable all though the procedure, but her left pulmonary artery may be very small. This may change what can be done during surgery but we haven't spoken to the surgeon yet. There is probably some blood flow through the left side but not much. We will post an update once we have seen her and the surgeon. Thanks to everyone for your support and good thoughts today.

Waiting........

and waiting......

Emmie has decided to let everyone know she's here. Thanks to Dr. Young for getting us here just in time. Emmie started having a few desaturation episodes today which is further evidence that she has outgrown the shunt. She doesn't have as much stamina and has to work pretty hard to eat. She's been pretty lazy today as well. Usually, she would be yelling and fussing for us to put her down and let her play by herself. Overall though, she is stable and doing ok, but she's telling us loud and clear it's time to put her big girl parts in. Unfortunately, her heart cath has been postponed until tomorrow b/c of an emergency. We were less than pleased, but Emmie was over the NPO and ready to eat. Little does she know, we'll have to do it all again tomorrow. I'll post more as we know.

Amy

We have made it safely to Boston. Emmie was fabulous on the plane though she didn't care for the oxygen very much. We are waiting to be admitted so we don't know very much yet. We do know she will have her heart cath tomorrow and we think surgery will be on Wednesday. I'll update the blog as soon as I know something.

Thanks for all the thoughts and prayers.

Amy, Liz, and Emmie

Please come to Boston.....

Giggling with Raah

Terry and Emmie

Checking Will out!

Emmie is showing off her new bling from Raah!

Liz's family arrived on Wednesday and we've had a blast showing them NOLA. Emmie has loved hanging out and "walking" with Aunt Betsy, Raah, Terry, and Will. Betsy may have depleted the snoball supplies all by herself! I will post photos soon of their visit.

Emmie had a routine (or at least we thought) cardiology appointment on Thursday. Her O2 sats have been trending down and they were a little lower on Thursday. Based on the echo and her sats, Dr. Young thinks it's time to do her next surgery. Everytime we take her to the doctor, they can't believe how well she's growing. She has just grown so well and so fast (thanks to her best friends) that it's time to move forward with the next surgery. We have decided to take her to Boston for this surgery. This was a very difficult decision because we really had a great experience at Ochsner and will certainly miss the doctors and nurses there. We decided to go to Boston in the end because it is one of the best centers in the world and we didn't want to have any regrets. We will fly to Boston on Sunday. She will have a heart cath on Monday or Tuesday and her surgery will be on Wednesday. It's been a whirlwind since yesterday getting everything arranged. Now as long as the weather will clear up, we will be on our way to Boston. I will keep the blog updated to let everyone know how Emmie is doing. We appreciate everyone's thoughts and prayers.

Amy

P.S. I went through all of the pictures and one's left to wonder- Where's Betsy? at the snoball stand! Betsy was too busy taking pictures or eating snoballs that she managed to skip having her picture taken. We'll have to remedy that situation next visit. Also, thanks to the whole crew for the moral support and for running errands. We greatly appreciate you all and are glad you all came to visit. Thanks also to Stephanie for finding the oxygen so we could fly!

ag

Dutchie's visit

Now that's a hot dog!

Blackjack!

"Thawing out " on the porch

Relaxin' with Dutchie

Ella's new favorite bedmate- think food and no Emmie

Dutchie's specialty- catfish and cornbread! Yummy!

Dutchie came for Nicolas' birthday party and then after much begging stayed for an additional two weeks! That's the longest she's ever stayed away from home. She didn't think too much of New Orleans style food so she cooked good old Southern food for us. I can still taste the fried catfish and cornbread as well as the peas and corn. YUMMY!

We showed her the town. She wanted to go to the casino so Lisa and I took her to lunch and to the casino. She was very disappointed that the slot machines didn't spit out the coins anymore. On an up note, she was dealt blackjack on her first hand.

Emmie and Ella took to Dutchie immediately! Emmie laughed out loud for the first time while Dutchie was playing with her. She thought Dutchie was hysterical and very entertaining. Watch the video and you too may laugh out loud. It was so great to have Dutch here and we can't wait for her to come back in the fall! We miss coming down the steps and seeing your smiling face. I'm glad you are feeling better and I'm so glad we had this time with you.

We love you,

Amy

Happy Birthday Nicolas and Aunt Ellen! Happy 4th!

Happy Birthday Nicolas!

and Aunt Ellen! Nice tiara!

Aunt Marsha and Emmie

G Daddy checking out Emmie's toys

Nicolas and Emmie

Ninja Nonie and Ninja Nicolas

Cousin Matt

Aunt Ellen and Sara

Gdaddy, Mimi, and Emmie

Dutchie

Happy 7th birthday to Nicolas and (we''ll maintain your privacy) birthday to Aunt Ellen! We were so excited that everyone decided to make the trip to New Orleans to hold this year's celebration and we look forward to making it an annual event. Emmie was so happy to see everyone and she was especially glad she finally got to meet her Aunt Ellen and cousins Sara and Matt.

We rented a giant water slide for the big event. I'm not sure who enjoyed it more- the kids or the adults (and I use that word lightly)! It was great fun and we all found muscles that we hadn't used for years. They kept reminding us of that the entire next week as well. I hope everyone had as much fun as we did and can't wait to see all of you again soon!

Love you all!

Amy

Bobble

Bobble and Emmie checking out the view from the activity mat.

Liz's mom, aka Bobble, came to visit for a while. She got to stay longer than we expected and we are glad Crete and Gray could spare her for a while. She and Emmie enjoyed getting to know each other away from the hospital and Emmie showed her her toys and all her new skills. Now she can reach for her toys, hold them, and rattle them purposefully. She's also making more and more noises. She spent a lot of time talking with Bobble. My mom told me the other day that she thought I was doing a great job being Emmie's mom, and I'd like to thank her both for saying so and for being my mom. She was the best role model I could have asked for.

Liz