Wednesday, February 2, 2011

Snowed...well, iced in!

Here we are, day 2 of being iced in. We just heard that we will be home for the third day in a row tomorrow. I'm not so sad because that means another day home with my sweet baby. He's been so good this week even after being cooped up for days. We haven't bundled up to go out and play, and I'm not sure that we will. It's so stinikin' cold out there! The windchills are in the single digits...come on, we live in TEXAS! 70 degrees on Monday, ice and 18 degrees on Tuesday. Typical I guess!
I've been terrible about keeping up with our blog, but this may be just the right time to get caught up. We have a whole surgery to talk about! I will get pictures and stories caught up...there are a ton!! Right now, though, it's back to the couch with my comfy quilts!

Saturday, February 27, 2010

I'm going to be better!

So it's been a very long time since I've updated our blog, but I am really going to try to be better about it. It looks like we are about to start a new round of frequent doctor visits and the anitipation of Preston's next surgery. We have so much going on with everything right now, I guess this is as good of a time as any to do it. We are house hunting and I never realized how exhausting that can be! Of course, when we weren't "looking" for a house we could find exactly what we wanted, now, not so much!
We went back to see our wonderful Dr. Siu. P hadn't been to the cardiologist since August so it was good to see him. We love him so much! He is such an incredible person. We've noticed that P's oxygen saturations have been dropping over the past few months, so we knew he'd probably be concerned. After his last surgery, his sats were in the low to mid nineties. When we saw Dr. Siu in the middle of February they were around 82%. Dr. Siu wasn't thirlled about that. He did an echocardiogram, which P hated! Dr. Siu said that everything still looked good.
We are going to do a cath on March 15. That will give us a better idea of how long we can hold off on the next surgery. As of now, Dr. Siu wants to plan on doing it in late May or early June. Having the surgery isn't a surprise to us, this summer is just earlier than we had planned. No matter when it happens, it's still very hard to deal with. I don't know what's worse, the anticipation or the actual day.
We'll just have to wait and see what the cath says. The faster he grows, the more of a need there is for the surgery. This one will be to re-route the blood coming from the bottom half of his body to his lungs. His lungs will completely take over the function of the his missing ventricle after this surgery.
We have so much faith in Preston's doctors and I think that's what gets us through most of this. We know that Preston is an extraordinary cardiac patient and we have God to thank for that. He is such a blessing to us and he is already such a strong boy! I know he'll get through this and be just fine in no time.
Preston goes back to Dr. Siu March 9th. We're praying that his O2 sats are still in the eighties, or he may want to do the cath immediately. It's only six days before it is scheduled, but that would mean that I would have to take off work and I don't have any time left to do that. Plus, we just want them to stay higher because he probably feels so much better that way.
I really am going to be better about updating our blog and I am going to get some pictures on here soon.

Wednesday, March 18, 2009

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!!

Saturday, March 14, 2009

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!!

Wednesday, March 11, 2009

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.

Sunday, March 8, 2009

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. exact replica!!

The incredible gifts from everyone at school.

Sunday, November 30, 2008

More surprises

The beginning of the school year was going well and I was feeling pretty good for the most part. I was concentrating on getting things ready for a sub and preparing my kids for the time that I would be out. Time was flying by as it seemed like the month of September came and went.

We had a wonderful baby shower and got so much wonderful stuff. It made me realize how much there was still left to get done before Baby P was supposed to be here. At the shower a lot of people commented on the size of my ankles. They were pretty swollen, but they didn't really bother me and I was still feeling really good.

The next Tuesday morning I was feeling a little weird. It was all I could do to make it to my conference period at 9:00. Once my kids were in PE I had the school nurse check my blood pressure and sure enough it was really high. When I spoke to the doctor's office they told me to go straight to the hospital for observation. Ten minutes after being there my blood pressure was way down. I was so worried that my doctor was going to put me on bedrest....thank goodness he only ordered me to stay home for the next two days. It was enough to make me really start getting everything ready at school though.
The next week I talked to a few people about being my long-term sub. Luckily, I secured on Friday. That same day I started feeling weird again. During dismissal I felt like I was going to pass out. So again, I had the nurse check my blood pressure...and again, sky high 141/114. I had to go right back to the hospital. We had only been there for about 45 minutes when the nurse came in to tell me that Dr. Thigpen said no more work for good. Talk about panic! It was only September 26th. I hadn't planned on being out until October 20th. I couldn't even think where I needed to start with the next step. I had left my room at school an absolute disaster so I made Brian go with me to clean up and get some stuff together. I cried the whole time I was there.
The next five days seemed to go on forever. Not only was I done with work, I had to lay on my left side in the bed. It's so much harder to be lazy when someone tells you that you have to be!
We had our regular weekly appointment with Dr. Thigpen the next Wednesday, October 1st. It was nice to finally get out of the house, even if it was only to go to the doctor. We were excited because we knew that they would be measuring the size of the baby at this appointment (they could only do it every three weeks). We went through everything as normal. As the nurse was doing the sonogram she asked if he was always a little smaller than he should be. Three weeks earlier he was right on track at 4 pounds 3 ounces. She was estimating him at 4 pounds 7 ounces, a gain of only 3 ounces in 3 weeks.

When Dr. Thigpen came in he looked again and again at everything and was certain that the baby had stopped growing. He looked at me and said, "do you have plans tomorrow?" I knew exactly where he was going. He told us to go home and get our things together and be back at the hospital by 6:00. That gave us 3 hours to get home and back!

We were so frazzled. I knew I should've listened when people told me to get my bags packed! I hadn't started washing baby clothes, I had no idea what I would need, who did I need to call?! We rushed around and got back to the hospital just fine.

We had to go in that night so that I could start Cervadil, a medicine used to soften the cervix. Since I was only 35 weeks, I hadn't started progressing at all. I wasn't dilated or efaced at all. My nusre started the meds at 7 and they actually started working pretty fast. We had some visitors and it was great to keep our minds off of being nervous. By midnight I was cramping really bad and having trouble sleeping. I didn't sleep at all that night, but Brian got enough sleep for both of us!

The plan was to start my Petosin at around 7 or 8 in the morning. I got up and showered at 6 and was already in quite a bit of pain. I don't think I was having contractions, just cramping still. When my nurse was trying to get my IV started my water broke on its own. That's when things really started to move. She started the Petosin at 9:05. It wasn't long before we started seeing a lot of doctors.

We had been prepared to expect a lot of people in the delivery room, especially now that Baby P was going to be born premature. We met with the neonatologist from Harris and her crew of nurses, the neo who would be with him over at Cooks, and our wonderful Dr. Roten too. They were there to help us understand what could happen when the baby was born. They were very clear on the fact that he could be born blue, not breathing, and unresponsive. It was one of those situations where we had to prepare for the worst and hope for the best.
It wasn't long after the swarm of doctors were in that my labor started moving really fast. I gave in and got an epidural at 10:45. It wasn't terrible, but they made Brian sit on the other side of the room. Wow! Why didn't I get that earlier?!
The next time my nurse checked my progress about an hour later, we were ready to go! Dr. Thigpen came in, I pushed 3 times and we had a little baby P at 12:20 pm!! It was so incredible. I didn't know what to think, I can remember saying in my head...cry, baby cry! That's all I wanted to hear. I think I was concentrating so hard on saying that to myself that I have no idea when he actually started crying! The power of prayer was obvious right away. He was breathing, he wasn't blue, and although he was small, he seemed to be bigger than anticipated.
I got to hold him for about thirty seconds before they took him over to Cook's. Brian walked over with him and stayed for a little while. When he came back he told us that he weighed 4lbs. 13.6oz. and was 17 3/4 inches long. I was so relieved that everything was going so well so far!
As long as the journey behind us seemed, now I knew that we had an even longer one in front of us.