Home again Home again...

We've been back home now for 4 days and I can't believe it's only been a little more than a week since baby P's surgery! We are really struggling with this lack of routine. We hadn't established a great routine pre-surgery (which was driving me crazy!), but now it's even worse. Tonight Preston finally went down at about 11. I keep telling myself we'll get there, but my fear is that it won't be until I'm home for the summer!

P is doing great! Sunday night we noticed quite a bit of bleeding at the top of his incision. We called the after hours number for the surgeon and were able to speak to him immediately. He didn't seem too concerned, so we went about things as normal. When we got up Monday morning the bleeding had gone all the way through the bandage and two layers of clothing, so obviously we called back. They wanted us to go ahead and come in just to be safe. Everything was fine and they gave us a different kind of dressing to use that's not as easy for Preston to pull on. We were scheduled to go for chest x-rays Tuesday, but they were able to get them done while we were there. Technology is so amazing! They took the x-rays, scanned them into the computer, and the cardiologist read them (from another part of the hospital), all within 15 minutes. She said everything looked great. There was no detectible amounts of fluid and that his heart had gone back to a good size. They had begun to see some enlargment prior to surgery.

Preston's feeding schedule, if you want to call it that, is really wacky. We pretty much have to guess when he's hungry. Sometimes he takes 6 ounces, sometimes 2. Pre-surgery he was eating about every 6 hours, but not anymore....earlier he took 5 ounces and then 3 more an hour later. UGH! Sleeping, well, that's a whole new story. Tuesday he didn't wake up until 12:30 in the afternoon!

He is such a trooper! Poor baby has eight different medications that he takes everyday. We now schedule our day around taking medicines rather than taking naps. We begin our regimen at 6 am, it then continues through the day at 9 am, noon, 2 pm, 6 pm, 9 pm, and he gets his last dose with his 10:00 feeding. (I say 10:00 feeding, that's what we hope for!) He will slowly come off of some of the meds, but probably not all. Right now he is taking Zantac for reflux (he's been on that for a while), mylicon very regularly! for gas, motrin for pain, benadryl for rest and to keep itching at ease at the incision site, cephalexin to keep infection away, lasix to keep fluid off of his heart and lungs, enalapril for blood pressure, and aspirin to prevent clotting. He will take aspirin everyday for the rest of his life, we're not sure how long the lasix and enalapril will last, and the rest should be short-lived. He used to take medicine like it was no big deal, but not anymore!

I think he's having some trust issues. Anytime he we get too far from him he gets sad face and screams! Our parents have tried to hold him and it has not gone well! He has become a Momma's boy, too! I'm not disappointed in that, but it makes me really worried to go back to work next week.

This sweet baby is so strong. He has already been through more in his short life than I think most adults have been through. I look forward to the days that these experiences drive his motivation to become a cardiologist who's a professional golfer on the side! Of course, he won't be playing at Walnut Creek though! :)

Going home...Yea!

Daddy was trying to hide:)

Bath time!!

We're going home!

Yea!! We got the okay about an hour ago to go home! I can't believe that we are only 4 days out from surgery and he's ready to go home:) Baby P is way off of his schedule and hasn't been sleeping much, so I'm looking forward to letting him sleep and catch up on everything that he's used to. We are waiting to get a couple of shots and for his nurse to take out his IV and then we're on our way. Thanks for all of the prayers, they are being answered!!

The days after surgery

Preston is such a trooper! He is doing great!! Yesterday was the longest day of my life. We got to the hospital at 7 am. I can't tell you how many times the thought of just not showing up crossed my mind. I knew in my heart that we had to do this to make him better, but I didn't (and still don't) ever want him to have to feel pain. He was so good before they took him back. We got to spend some time together with our families and everyone got to see him before the surgery started.

They finally took him back at 9:30. He hadn't eaten since midnight so the hardest part of keeping him occupied was fighting his hunger. It took about two hours from that point until the surgery actually began. It takes that long for the anesthesia team to get their lines set up and going. Dr. Tam came out and talked to us at 11:30 to let us know that he was going in to began the procedure. He told us it should take anywhere from 3-4 hours from that point for him to finish.

Someone from inside the OR called every hour to give us an update. Every time they called they let us know that things were going well and that he was doing fine. He was on the heart/lung machine for about two hours while they stopped his heart to make the repairs. While they were in there they banded his pulmonary artery to restrict blood flow to his lungs a little more and closed an atrial septal defect. He also put the bi-lateral bi-directional Glenn into place. This is what connects the blood flow from the top portion of his body directly to his lungs.

Surgery lasted until about 5:45. We got to see him coming out of the OR on his way to ICU and that was pretty tough. It was a weird feeling because I at least knew that he made it through surgery all right, but I knew we had a long few hours ahead of us.

We immediately saw Dr. Tam and he explained everything that he saw. Preston did have to get some blood while he was on the heart/lung machine, but that's a minor part of the surgery. He discovered that the top right pumping chamber (the right atrium) is actually connected to the left ventricle (which is not developed). His heart, in a sense, sits in an inverted position. Eventually this could cause blockage, which means possibly needing a pace maker in the future. He didn't necessarily find any huge surprises, we had just never talked about the possibility of a pace maker.

All of this information was VERY overwhelming having just seen our baby come out of an eight hour open-heart surgery. I knew what Dr. Tam was saying, but I wanted to see our cardiologist because he can explain things a little more clearly. As luck would have it, he had come to check on Preston during surgery and found us shortly after.

Dr. Siu (P's cardiologist) talked with our families for about 45 minutes explaining that Dr. Tam had mentioned the pace maker only because he didn't want us to be blind-sided by it if it did become a necessity. he was able to explain to our parents what we've been trying to relay to them for months, and I think that helped them to have a better understanding of everything. When he was finished talking to us, he led our families in a beautiful prayer...incredible!

We got to stay with him while he was in ICU which was great. The first night was good, they kept him pretty comfortable and he didn't have too much awake time. They took him off of the ventilator around 9 and he did really well with that. It was very scary! They like for them to get feisty before and after so they can make sure that they're continue to breathe off of the machine.

Brian and I both stayed with him that night...which was quite interesting! I hadn't slept at all the night before and we were both emotionally exhausted. There was a 'couch bed' thing that both of us managed to sleep on. For most of the night we slept head to toe, you know like you did at summer camp! We're not small people so it had to have looked hilarious!!

They slowly took him off of everything that he was hooked up to. He had lines that were connected to his heart to watch the pressures and rhythms, a central IV, an IV in the artery in his right arm, catheter, and a chest tube for the drainage coming off of his chest. They had all of it out by Thursday morning and had a started a smaller IV in his arm for the meds he was still getting intravenously.

We moved up to the cardiac unit yesterday so baby P now has a private room. It's a lot more peaceful in here and he got to take his first wagon ride:). He only has an IV in his arm and has a heart monitor on that his tracked 24 hours a day. Brian stayed with him last night while I went home to sleep. I got a great night's sleep, unfortunately Brian can't say the same! He said that everytime he would fall asleep Preston would start to wake up about 30 minutes later. I'm staying tonight so hopefully he'll get some more sleep.

We saw Dr. Roten today and she mentioned the possibility of going home Sunday if things continue to improve. He has to be eating normally (which he's not, yet), not be fussy, and be off of all pain meds (he's on motrin and lortab). He has a little bit of fluid on his lungs because of the huge change of blood flow so he gets lasix to help pull that out. As of now, when we go home he will only be on half a baby aspirin a day, lasix, and blood pressure medicine.

Baby P and Daddy are sleeping peacefully now as a beautiful CD plays. One thing they gave me at work last week was Bless my Baby Boy and it is so wonderful. As soon as I turned it on Preston started laying still and was asleep within five minutes!! Everyone keeps telling us how wonderful he is doing and our only reasoning is the Power of Prayer! We are so grateful for all of the thoughts and prayers that have been spoken for us!

The picture that Brian took in ICU secretly.

His wagon ride from ICU to the cardiac unit.

Sleeping...

As we prepare...

Well, the day we have known would come for months is less than 24 hours away now. It's been a great weekend spending time with family and trying to keep our minds off of the upcoming week. We needed to get a lot done around the house, and managed to get none of it done!

I have known for a long time to count my blessings, but the past few days have shown me that the blessings in my life are far too many to count. I am a true believer that God puts you exactly where He wants you. And Friday that became even more evident. The amazing group of people I work with could possibly be the most self less people I've ever met. I've known this for a long time, but Friday they poured their love out to our family. They gave over $700 in cash to Preston's medical fund, they put together baskets of snacks for the hospital, gave us gift cards to eat at a number of different places, and gift cards to Target and Walmart. They even put in a request to the Prayer Child Foundation for our sweet baby P. That foundation gave $800!! Wow!! Not only did they give us all of these things, they came together in prayer for us...the best gift anyone can give us. Everyone I work with gathered in the library after school on Friday to give me all of these incredible gifts. A-maz-ing!!

This has been a difficult road for us and I don't think I can really prepare for what lies ahead. I know that ther are so many prayers being said tonight and I know the Good Lord is listening. So, as we prepare for the morning I want everyone to know that we know everything will be all right. I've had to remember to breath sometimes and I'm sure I'll need to be reminded tomorrow, too. We are going to have a lot of family with us tomorrow and that will help to keep us occupied. I know that those of you who can't be there with us will be sending your good thoughts and prayers. Thank you!

As Baby P's doctors say, we've just got some plumbing issues to fix and he'll be good to go for a while. We know we have a long road ahead of us, but we'll get there.

Hmmm...an exact replica!!

The incredible gifts from everyone at school.