Home sweet home...

Even though everyone at CHOP was amazing and we felt secure in their care, we couldn't have run out of there quicker. Jack was officially discharged on Wednesday, August 11th. The past 6 days have been wonderful, amazing, challenging, awesome, tiresome and simply the best yet...

Jack! Jack! He's our man!

Wow how things can change in the blink of an eye. Jack is doing excellent! Most of his swelling is down, he is eating (like a champ) and his vital signs are great. All lines to the heart, that were once giving him medicine directly to the heart, have been removed. He is only still hooked up to the oxygen for a little added help. We have been moved to a private room in the Cardiac ICU. With our fingers crossed, we are hoping to get released by the end of the week. If someone would have told us this last week, we would have thought they were crazy. We can't wait to go home! Although we are hoping they send us home with a few nurses for the added support - but I don't think they will :)

We are so excited for everyone to come visit Jack at home. However, this may need to wait a couple more weeks. The nurses have recommended limiting the number of visitors to ensure Jack does not get sick. Because of his vulnerable state, his immune system needs to build itself up.

Thank you all for your thoughts, prayers and love - it has truly helped Jack, Mar and I get through the toughest time in our lives.

Rough night

Last night was tough for Jack. Following surgery, Jack was taken back to the Cardiac ICU where he started his journey. All thoughts were positive and Jack was looking great. Mar and I decided to grab a bite to eat with Mom-Mom and GP and then head off for a brief cat nap. When we awoke, we headed straight to see him. We were there for about 10 minutes when all of a sudden Jack's blood pressure began to drop VERY quickly. Before we knew it, the alarms had sounded and 30+ people were running to Jack's bedside. The feeling is indescribable. I felt as if I could not breathe and time was standing still. The Doctors and Nurses quickly stabalized Jack.

...The reason for the severe episode... Jack had fluid around his heart. Our nurse (Kim - she's amazing) worked all night to manipulate the fluid away from the heart. Jack's surgeon (Dr. Spray) came in to check on Jack as well and manipulate the fluid away from the heart.

As of this morning, Jack is doing better. Still not out of the woods but hasn't had any 'episodes'. They are removing the chest tube now and plan on possibly removing the breathing tube later this afternoon.

We truly believe that Jack is hearing your thoughts and prayers and is on his way to a good recovery. We are so extremely grateful for the love and support from all of you - our family and our friends.

Surgery a success

Jack has successfully made it through surgery. We spoke with the surgeon (Dr. Spray) who informed us that the surgery was a success and he foresees no complications. The next 24 hours will be critical to Jack's recovery. We expect to be able to see him in the next 30-45 minutes. Thank you all again for your thoughts and prayers. Yay Jack!!!!!

Jack's big day

Jack has found his place on the surgery schedule. Surgery will begin at 7:00am this morning, Wednesday, August 4th - just one day shy of his original due date. Please keep Jack in your thoughts and prayers. I will send an updated status as soon as the surgery is complete.

Thank you to all of our friends and family for your continued love and support.

...Waiting

We originally thought that surgery would be tomorrow (Tuesday) but later in the day found out that Jack is on the schedule for Thursday. The waiting is very stressful. MaryAnn was discharged today from the special delivery unit but we will be staying at the hospital as long as we can get a sleep room. Sleep rooms are first come first serve and are not as desirable as the conditions we have had. But none of this matters as we are able to sleep just a few rooms away from our little guy. Jack is continuing to breastfeed very successfully.

Jack had an Eco earlier today which again confirmed that in addition to the TGA he has narrowing of his aortic arch. This will need to be fixed during surgery. Surgery is scheduled for Thursday and will last approximately 3-4 hours. We will not know the time until the night before.

We thank you all for your continued love and support and will keep you updated.