A few pics from this morning

Jack wasn't too excited about going into surgery this morning...

But then the Nurse Practitioner let mom hold him AGAIN! (for 30 minutes!)

And he calmed right down. :)

It was so hard to let the doctors walk off with our sweet little guy this morning, but we have really been blessed with a sense of peace that the Lord is in control right now and he's taking very good care of him.

Sometimes as we worry it's easy for us to think how hard this is on us, but then we remember that this is in fact Jack's journey and we're just here to help and support him through it. I keep waiting for the floor to fall out from under us, but so far he has been a real champ and we just keep praying that it will continue that way.

Today we are one step closer to holding him in our arms again and to taking him home.

Update

They just began working on rebuilding Jack's aorta. No curve balls or anything unexpected so far, so that's good.

We also just got a great visit from another HLHS mom and her little boy Jack who is now 2.5 yrs old. He is the cutest, most energetic little guy and was just the inspiration we needed to keep us optomistic today. Thanks Lisa.

First update

They just gave us our first update. They have made their incision and started the procedure. He got on the heart lung machine and he seems to be doing ok. They are now going to start to update us every hour or so.

Surgery is about to begin

We are now sitting in the waiting room waiting for Jack’s surgery to begin. We came over early this morning to spend some time with him before. They let us hold him again which was great. Dr. Kaza came and visited and told us he would take good care of him. We believe him but man it was hard to tell him goodbye. They will provide us periodic updates on his progress. We are scared but know he is in the best hands he could be

Thrill of a Lifetime!

We were so lucky tonight to be able to hold Jack. Two fantastic nurses, Teresa and Amy, decided to go against protocol and let us hold Jack before his surgery. We were going to go in really early and do it then, but they decided it would be easier to hold him tonight than in the morning since the surgical team will be running around a lot of the time. I can’t tell you how grateful we were to them to let us do this.

Aimee got to hold Jack for about two minutes on Tuesday but that had been it. Tonight she got to hold him for almost 15 minutes and both she and Jack loved every minute of it. Jack had been fussing but quieted right down as soon as he was in his mothers arms. Naturally this had the opposite effect on Aimee and made her cry. I finally got my turn and I have to say it was the thrill of my life. I looked down at his sweet face and felt so comforted knowing that he is going to be cared for by the best Doctor’s in the world.

They have tried to prepared us for what Jack will look like after the surgery. I know we will still be so sad to see our perfect looking son come back to us swollen and with an open chest. But I also know that it is the first step in getting his little heart better so that we can hold him every night in our home.

We are thankful for everyone’s prayers on his behalf. Being able to hold him tonight was so comforting and that is an answer to prayer. We will try and post periodic updates of his surgery tomorrow as well as a picture of him when he comes out. Thanks to all of those who came by to see him today. All six Grandparents, Uncle Jon and Aunt Angi, Travis and Jill, Stephanie Barton, Cody and Steph, and my very understanding and supportive boss Jeff Ross. We have truly felt everyone’s love for us and for that we are grateful.

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1 day to go

Not much going on today. We have been trying to spend as much time as possible with our little guy before his big day tomorrow. He has had some visitors throughout the day which has been nice. He is a little fussier today because the poor guy has not eaten yet. He is starting to get pretty hungry. They are in doing an echo-cardiogram right now and with it should come some mild sedation. I think this will be good and help calm him down a little. His Uncle Jon and Aunt Angi came to visit and he enjoyed meeting them. I have spoken with both Dr. Su (our cardiologist) and Dr. Kaza (the surgeon) today. They walked us through the procedure again and answered our questions. I feel so blessed to have my son treated by such talented people. They have been both compassionate and realistic with us which we really appreciate. Right now we are just bracing ourselves to see our cute little baby come out of surgery tomorrow with an open chest and wires everywhere. Spending time with him it is easy to pretend nothing is wrong. I sat and watched him this morning and wondered if he really only had half a heart. He does and so we will put our trust in the Lord and these great people who he has blessed with such talent to take care of him. Your thoughts and prayers are very much appreciated and we tell Jackson all the time about all of the people who are looking out for him.

Clip of Jack

Surgery Scheduled for Friday Morning

We found out this evening that Jackson’s surgery is scheduled for Friday morning. He is first on the schedule so they will begin around 7:30 a.m. The surgery should last approximately 6 hours or so and will be performed by a new surgeon at Primary’s, Dr. A.K. Kaza. He’s new to Primary’s, but transferred here a month ago from Boston which is supposed to be one of the top hospitals for treating HLHS in the U.S. so we feel really good about it. He’s done this procedure many, many times and while he was very realistic about the seriousness and difficulty of the procedure, I think he’s the right man for the job.

Everyone’s prayers worked so great for the delivery which went fantastic, we’re hoping you’ll all continue to pray for little Jack as he now faces the really tough stuff which starts on Friday.

Visiting

Anyone interested in coming for a visit is welcome to stop by Primary’s tomorrow. Just give me or Hardy a call or email so we can come meet you. Only 2 people can be in with Jack at a time, and one of them has to be a parent, so it helps if we can coordinate so everyone isn’t there at the same time. Also, the NICU is closed between 6:30 and 7:30 both AM and PM while the nursing staff changes over.

After his surgery on Friday Jack’s chest will be open and he will be pretty swollen so we will be limiting visitors for a few days (family and those who have had kids in the PICU only, please), but you can still come hang out with me and Hardy – we just won’t get to introduce you to Jack ‘til he’s doing a little better.

I apologize to those who have tried to call or text me – I have had no cell phone coverage in the hospital and haven’t been overly mobile to wander and find a hot spot. I get discharged Thursday morning though so I’ll try to return and answer some calls.

A Name and a Blessing

Tonight we gave Jack a Name and a Blessing (a special ordinance in our church). Typically this is something done when babies are a few weeks old, but we thought we better do it before his surgery. Hardy gave him the most beautiful blessing. We were all pretty emotional as he began, but the Spirit was so strong in the room and brought such peace. It was very special.

Milestones and a Bonus

Earlier today my mom came out for a visit and she and I sat with Jack for a while. The medicine he is on to keep his heart working tends to make him ache and get the chills (kind of like having the flu). I learned how to properly sooth him by placing a firm, gentle hand on his head rather than stroking so I was able to help comfort him. Then he gave out a tiny and sad but wonderful little cry. It was the first time I had heard him cry since he first popped out and it was so wonderful I cried myself. He also woke up a few times so we got to see him with his eyes open.

And you would never believe which one of us changed the first diaper! That’s right – Mr. “I am physically unable to change a diaper” Hardy! It was only wet, but he did it. And Jack even peed on him.

Then tonight for a special bonus, I got to help give Jack a bath! It was just a little sponge bath rub down, and really the nurse did most of it, but it was so nice to feel like I’m actually doing something to help care for my child. Jack cried and squirmed, but Hardy held in his pacifier which he can’t get enough of and he did great. It has been an awesome day with Jack.

Aimee and I were lucky enough to spend most of the morning with our darling son. He is doing pretty well today. They gave him some medicine that can give him some flu like symptoms so he is a little irritable but overall is doing very well. We feel very refreshed today. Thanks to some wonderful friends (Chilton’s, Christensen’s and others) we were able to get a room at the University Guest House. Since I slept a total of 45 minutes the night before it was great to have a good place to go sleep. I came over this morning and spent some time with Jack and then came up to get Aimee to take her down to see the baby.

Dr. Su, the cardiologist, came up while we were there. The man has the aura of a genius, which of course he is. He answered a lot of our questions. The cardiology team met this morning to review Jack’s case and they are planning on surgery on Friday or Monday. The good news was that the results of echo cardiogram looked good (except for the two chamber heart, of course) and that they are optimistic that the surgeries can work. Aimee and I are starting to buckle down and realize that this is really going to be a long road. Luckily now we can start to see how rewarding it can be. We are so grateful for everyone’s support and kind thoughts and comments. It is truly overwhelming and makes me want to do better at expressing encouragement to those who need it.

Here are some more pics of the little guy.