Peyton's Doing Better

About a week ago, I posted that Peyton was out of surgery and if he behaved, we would be coming home by the end of the week. Well.......... How could I dare say he didn't behave, but...we are still here. My poor baby had quite the week last week, but I should preface that by saying this week looks so much better. We didn't know that Peyton was headed for two more surgeries and a stay in the PICU. The first shunt revision didn't take as well as we were hoping and within 18 hours, he was symptomatic again. I won't go into the details, but it is very scary to see your child affected by too much pressure in the brain. This happened a few times and he finally ended up with a EVD which is an external ventricular drain. The system is quite the contraption, but the neurosurgeons felt it was better to externalize a drain for the CSF until it was clear his shunt was working or not working and we could go to plan Z. (We've had too many plans to count at this point.)
Yesterday morning they clamped off the external shunt and so far, so good. It looks like his internal shunt is doing the job. He now is scheduled for an MRI today to check things out. Please pray we receive good results!
I've included a few pictures that I just love to look at on my cell phone. They are both showing Peyton in a Halloween Onsie. We had an outfit picked out for trick-or-treating this year, but it is basically hanging in his room in the PICU. (We'll have to put him in his Tigger outfit for pictures at a later date.) The funny thing about the onsie is that with soooo many lines hooked up to him right now, it's almost impossible to take it off and this Mommy who is usually quite confident since my "initiation by default" into the medical field, is not willing to fool with these wires....especially when we are talking lines connected to his brain! ah, no thank you!
Enjoy the pictures!

My Little Trooper

Wow! I haven't blogged about Peyton in a long time, yet I think about writing all the time. Whenever he does anything, I want to chronicle it and share it with the world! It's getting my fingers to find the time to find a keyboard, though. But, no more excuses....I promise to keep up and make the time.....
Our little guy is going to be turning one soon! It's so hard to believe that he can legally face forward on the car seat within a few weeks. When we've had such a year, we have to indulge in the little things as well as the big.
First of all we are looking forward to trick or treating this year. Peyton is going to be Tigger! He has an adorable outfit that I can't wait to fit him in. And I know we will take plenty of pictures! :) Who wouldn't take pictures when they have such a handsome guy to show off??? (I just can't be humble today.)
Currently, we are at Children's. Peyton was exhibiting signs of something going on last Thursday and Friday during the wee hours of the night. He just seemed abnormally sleepy and his heart rate was very low. Marathon runners would kill for a heart rate like Peyton's, but in a little guy, it wasn't exactly a good, healthy rate. So after a few more uncomfortable signs that something was up, we took a trip to Children's and discovered that Peyton's shunt was malfunctioning. We have spent the last few days trying to keep him stable for surgery for a shunt revision. Of course, Peyton had to add some drama and scare us a few times. The neurosurgery team has kept their eyes on Peyton and even had a few moments of contemplating a stay in the PICU. But....we made it to surgery and discovered that the shunt was partially blocked. Dr. Woodward did her magic and Peyton is now recovering in our cozy room. If he behaves over the next few days, we can go home by the end of the week. Yay!
My dear little one is squirming around, so I better go give him some loving!

Going Home

After a more than three week stay at Childrens, we are going home! Peyton had surgery for a g-tube and fundo 4 days ago and is recovering great. We have been learning all the in and outs of a g-tube and feeding pump. Nothing too hard, but such a lifesaver for our little guy. Eating had really become something we were not looking forward to since Peyton would reflux and choke so often. It got to the point that feeding him was like setting him up to be tortured by his refluxing and aspirating tendencies shortly after every meal. Now, we "fill up his gas tank" as Colby says, as he happily sucks on his binki!
After surgery, Peyton went back on Oxygen for a few days, but has now been off for 24 hours. He has dipped a few times in his saturation, but nothing too bad. He just has to keep us on our toes! ha ha I personally think Peyton decided if Grandma and Papa were going to be out of town for the month, he was going to add his own excitment for July!
Here are a few pictures I took during our stay. My favorite is the one in which he is holding on to John's finger. This was taken when we got to our room after surgery and Peyton was still pretty out of it, but knew that Daddy was standing right beside him.

A Busy Month!

I can't believe it's been a month since I've last posted! We've had some fun adventures and not so fun adventures. First, we all enjoyed a day at the Fresno Met. It was a "field trip" for Andrew. I have him doing some summer school work at home with me and after completing a set number of days, we planned a few field trips. We asked the Gomez girls, Colby, and Katie to join us. We missed Christian who was at summer school at the time we could go. We all "had a ball" as we visited the ball exhibit, Bob the Builder, and Brain Teasers and Scientific Phenomena. We then went to Red Robbin for a great lunch. We had fun! I was thankful that Colby and Katie came to share the day with us. They were helpful with Peyton when I had to attend to his "lunch".

We also have spent some time at Children's this month. It seems that Peyton is having a little trouble with his bottle feeds. While he is able to take a bottle, he is still burning too many calories and his refluxing and occasional tendencies to aspirate have made bottle feeding too risky. He is now on a temporary NG feeding tube with a continuous pump while we await surgery for a G-tube and a fundoplication. The fundo is a surgery in which the top part of the stomach is wrapped around the esophagus to make it impossible to reflux and vomit. The G-tube is a feeding tube that goes directly into his tummy to making feeding a little easier and takes away the risk of aspirating as the food has a direct connection rather than going through his esophagus. I am looking forward to the surgeries to get him over this hump and start putting some weight on this little guy of ours.

Peyton's Baptism

We baptized our handsome son yesterday, June 13, 2009. This has been a long day in planning. I was so happy with how everything turned out. Peyton looked quite stunning in his baptismal outfit, not that I'm partial! :) Peyton was baptized with two others at Our Lady of Perpetual Help in Clovis, the church I grew up in. He behaved very well and even smiled when water was poured over his head. I have a sneaky suspicion that our little boy knew what was going on!

Following the baptism, we had a luncheon at my parent's home. The display of food looked wonderful. I normally can make up my mind fairly quickly about details, but I was not the same person in planning for this celebration. I kept calling around different restaurants to cater our event and eventually settled on a menu comprised of a little bit of everything. It came together perfectly!

Peyton's baptism was a day of celebrating his birth, graduating from the NICU, and being formally introduced to the Christian community. It was all wrapped up into one event. I remember planning way back in the earlier NICU days that we would have a baptism 3 months after he came home. I wanted this to be the event that would say, HERE IS OUR SON, WELCOME BABY PEYTON. And indeed, that was what the day turned out to be.

(I only have a few picture of the event so far. I'll have to get the other ones later. Cousin Kim is the photographer of the family and I can't wait to see what she was able to capture!)

Gaining Weight

Since our hospital stay, Peyton has been on thickened liquids. The nectar consistency has really done wonders. Peyton had lost 3 oz during the week we stayed at Children's but has since gained 9-10 oz! He isn't choking hardly at all and isn't refluxing like he did before. I think he feels better overall because he is smiling and interacting so much more. My favorite pasttime is laying down beside him and interacting. Peyton wiggles with excitement and makes "talking" noises, smiles, and grabs my face! I love it!

A Visit to Children's Hospital..We just couldn't stay away!

Peyton is doing so amazingly well, but none-the-less, a trip to Children's was part of the plan. Sunday night, while I was giving Peyton his meds and bottle, he became brady. Now, this isn't something new as it happened many times in the NICU and a few times when we first came home, but he decided he was going to become VERY brady and make the recovery slow. I couldn't get him out of it and he became non-responsive. He turned many different colors and became limp. Once I realized I couldn't stimulate him, I started to put him on the floor to perform CPR. But as I did so, he started to come to, but was very pale still and was definitely not getting the oxygen he needed. I raced with him to his room where we had his Oxygen and while I was hooking him up, John called 911 and Andrew grabbed the monitor and helped me hook him up to get some numbers. Right away we got really low O2 and heart rate numbers. Interestingly enough, we brought up the oxygen, but his heart rate refused to come up. He was hanging around the 70's and 80's and anyone with infants knows, that's not good. First the fire department came, then an ambulance. The EMT's were there watching me as we finally got his heart rate a little higher. We decided a trip to Children's to evaluate him was called for. We loaded the ambulance. On the way, Peyton decided he wasn't quite through scaring us. His heart rate continued to dip and soon we found ourselves making the trip with sirens and lights. As soon as we got to Children's Peyton's heart rate returned to a normal rhythm and then the tests began..... To make a long story short, Peyton was admitted and doing much better. We think he probably aspirated and started a chain of events...including going back on Oxygen for a day or so. Having been intubated for such a long time in the NICU has given Peyton Chronic Lung Disease which made the situation worse. He is going to have a swallow test tomorrow to see if that can answer any questions. He's taking a nap right now as I'm typing. Part of me thinks he schemed to visit all his friends at Children's!