September 28, 2009

As we have learned, after almost 13 weeks in the NICU, there are always ups and downs. Gabe's chest tubes have been putting out only about 10cc's a day for the last few days. Last night, however, they started putting out quite a bit more. I believe one put out something like 70 and the other around 55. This was very disappointing for us to hear because we thought he might finally be starting to dry up. Along with the extra fluid, his numbers weren't quite as stable, yesterday and today, as they have been over the last week or so. His Alubmin levels and IGG levels were low, so he received FFP in hopes of bringing those levels back up. There were a couple other levels that were lower then they should be, but for the life of me, I cannot remember what they are. Dr "B" dropped by to say hello and said it's just going to take "time." We have seen many ups and downs over the last three months, and know that Dr "B" is right, it's just so hard sometimes. More than anything in the world, we just want to bring our little boy home!

Along with his FFP, Gabe also had an abdominal ultrasound, and a full body skeletal x-ray today. Needless to say, it was a very busy morning for Bubba and Nurse "L." The abdomenal ultrasound will be repeated every two weeks to keep an eye on G's liver and the masses. GI wants to see if the masses are growing, and if so, at what rate. The hope is of course that they are not growing. There is a possability they could shrink, so fingers crossed this is the course they choose to take. The full body skeletal x-ray was done to get a good look at all of G's bones and how they are growing. Any time a genetic disease/syndrome is suspected, one of these is done. Gabe would have had this done many weeks ago, however it's only been in the last few weeks that he has been able to be turned and manipulated, and there is much of that involved in this x-ray. I think they took about 19 x-rays of him today. If any of these show abnormal growth/development of bones, it could be another piece to the puzzle, and possibly help with a diagnosis. Gabe is going to be a glow-in-the-dark kid by the time he leaves the NICU. I guess it could be cool party trick in college.

Despite everything going on, Gabe still looks great and is continuing to shrink. The smaller he gets the more aware I become of just how small he should have been when he was born at only 32 weeks. For the most part, he has been pretty mellow and enjoys spending long periods of time looking around. He has been kicking his legs, wiggling his feet and toes, and I actually saw him move is left arm down a bit today. I was really excited to see this because it gives us hope he will not spend the rest of his life in the muslce man pose. G is beginning to have better control of his eyes now, and we rarely see them go different directions anymore. That was always a little freaky. Today they weaned a bit on one of his sedation drips and on his vent. Both very exciting things.

Regarding the possible Noonan Syndrome diagnosis; blood was drawn today to be sent off for genetics testing. It could take approximately 6 weeks to get the results. Waiting...waiting...waiting...so much waiting....

September 27, 2009

We are finally spending a long overdue weekend at home. Shannon and I have been bouncing back and forth between the hospital and home and only seeing each other in passing and it starts to take its toll. We decided that since Gabe has been doing so well we would have a little "stay-cation" at home with Kayla. Trying to do what normal families do on the weekend and we are very glad we did.

Gabe has been doing very well. In fact, he has been improving each and everyday with only little adjustments to his fluid input and output. They have also been bringing down his ventilator pressures and also bringing down his pain medication drips, all good things. His chest tubes have been putting out less and less each day, getting closer and closer to finally having a dry chest. We even got a special visit from Dr. B, saying Gabe's lungs are the best he has ever seen. If we keep up on this pace of a dry chest and decreased ventilator pressures, we are getting closer to taking his breathing tube out.

Gabe has been enjoying spending time on his stomach and sitting upright in his boppy pillow. We have been working with Gabe's arms each day trying to loosen them up and allow them to rest at his side. What used to take two hours to do is now only taking about twenty minutes. Its absolutely amazing. I actually massaged them down by his side and he fell asleep and kept them down for three hours. His hands are even starting to straighten out, using massage and his new hand splints. He has been having longer periods of awake time and is not fussing, rather he is taking in his surroundings and loves watching his mobile. Even the spa music seems to be helping that he listens to on his custom iPod. The nurses have been seeing a decreased heart rate when they put on his music when he's agitated. That means they don't have to use sedation and that's what we want to hear.

Gabe doesn't know it yet but he has his very own 49ers autographed fire helmet waiting for him at home. The 49ers came over and visited the kids at Ronald McDonald House this past week. They played games with the kids, signed autographs and even BBQ'ed everyone dinner. It was awesome to watch them come and make these kids day. They were surprised at the fire helmet I presented them to sign, saying that this was indeed a first for them.

We are very excited with Gabe's progress and we continue to be amazed at what this little guy can do. He just never gives up and always pushes forward with absolutely incredible strength and determination, something we can all learn from. Thank you for your continued prayers and thoughts. Talk to you again soon.

September 23, 2009 - 12 Weeks Old

Just when we thought things might finally be falling into place...along comes genetics.

Jesse and Gabe were hanging out this afternoon, minding their own business, when in walks the genetics team. They have been following Gabe from day one since he is a complete mystery. They did a full genetics work up on him in the first month and everything looked as it should. I guess I should say, all the usual genes they look at, looked fine. There are billions so it's hard to get a good look at every one of them. Since adding Chylothorax to Gabe's list of "things," genetics now feels he may have something called Noonan Syndrome. Apparently they feel that G's eyes are a little further apart then "normal;" his legs and arms are shorter then they should be; along with a couple other things they rattled off; and with the now diagnosed plural effusions being Chylothorax; these are all characteristics of Noonan Syndrome. They drew some blood for further genetics testing. There are three specific genes they will be looking at now. It will take about two weeks to get the results back and even those are only something like 70% accurate. Jesse and I have spent A LOT of time staring at Gabe over the last 12 weeks, and never once have I noticed any of these things genetics is talking about. I know I'm not a professional or anything, but I was really surprised when they started talking about some of his measurements not being "normal." So what is Noonan Syndrome you ask???

Per the Noonan Syndrome Support Group it is:

"* It is believed that 1 in 1,000 to 1 in 2,500 children worldwide are born with this condition.

* Each day a child is born with the condition.

* It’s possible that people carry the gene yet are undiagnosed.

* Once affected, their is a 50/50 chance of passing the gene on to one or more of their children.

* It can also occur sporadically, presumably due to a new mutation.
Often called a “hidden” condition, the children affected may have no obvious casual signs to the onlooker, but the problems may be many and complex. A clinical test is available, in some cases. As of 12-03-06, 3 genes have been identified. This is a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals may have behavior problems, learning difficulties and many other anomalies. Noonan Syndrome is one of the most common of those conditions associated with congenital heart abnormality.
Still its exact cause remains unknown….."

Good old Wikipedia has a pretty thurough description of the Syndrome along with a list of manifestations. There were things in almost every category that applied to Gabe, however a lot of the things were pretty general. I bet most of us could find a few things from the list that could be applied to ourselves.

Instead of freaking out about this Noonan Syndrome, Jesse and I have decided to stash it away in the back of our minds, as much as we can, and wait for the results. No since in worrying too much about something we have no control over. He is still our son regardless; we won't love him any less; and should he have special needs because of this syndrome, then we will deal with them as they come. Gabe seems to finally be on a good path and we don't want to let this new information get in the way of us enjoying our son. Yes, genetics definately took the wind out of our sails this afternoon, with this information and possible diagnosis, but we are recovering, and just want to continue loving our Gabriel for the precious little person he is.

September 21-22, 2009

I'm sitting here staring at the computer and my mind has completely blanked out. I just spent the last few days with Gabe and I cannot think of a singal thing to tell you all about him. Oh my gosh...It's offical...I've lost it!!!

Think...think...think....

It used to be that we'd sit down to blog and we didn't even know where to begin. There was just so much going on with Gabe, but lately things have been pretty mellow. This is of course a good thing. Other than waiting for his plural effusions to dry up; his lungs to get stronger so he can be extibated; and weaning him off of his happy juices; there really aren't any other major things to report. Wow! This is awesome!!! We are of course still concerned about his chylothorax drying up on its own. If the lymphatic system can heal on its own, this usually happens 4-6 weeks after all feeds have been stopped. I believe Gabe is now going on about 2 weeks of starvation (he is getting TPN and Lipids intravenously but that just isn't the same as real food), so fingers crossed we should start to see some signs of improvement in the next 2 to 4 weeks. If his plural effusions are still present after 6 weeks of no feeds then we may need to look into a medication called octreotide. I really hope we don't have to go down this path. The poor little guy has had so much junk pumped into him over the last 12 weeks, I really don't want his body to have to process one more thing. Gabe is starting to have more "good" days then bad. We are beyond excited about this, but still have our guard up at the same time. We have seen him go backward so many times, we are still a little cautious when things are going well.

Since Gabe is no longer being poked and prodded all day long, he now spends his time snoozing; watching his mobile; jamming to his spa music; getting massages to help with his tight muscles; taking sponge baths; trying new ways to lay in bed, like on his tummy and his sides; looking around at the boring NICU room; and listening to mommy and daddy blabber on and on about how adorable he is. I know I've said this before, but Bubba is seriously cutest little boy I have ever laid my eyes on. Now that he is on less sedation he has more awake time, and it's so awesome to see him with his eyes open. He is starting to do more "normal" baby things and this is really exciting! We know that there are still many hurtles he must overcome, but considering what the little dude has conquered thus far is his 12 weeks of life, I have faith that Gabriel can handle any obstacle thrown his way.

Go Super G go!!!

Sept. 18-20, 2009

Another day just zoomed by and I can't even recall exactly what happened. It's scary when I can't even remember what I made Kayla and I for breakfast, lunch is about as far as I can remember. In fact I actually had to write a shopping list for 4 things at the grocery store, that's pretty bad. I think that Shannon and I are just on auto-pilot to get through the day. It seems that no amount of sleep actually makes you feel any better, its a feeling I have never felt before. I feel bad that so many people call to talk and see how we are doing and I just don't even have the energy to talk. It's a horrible feeling.

Gabe has been doing fairly well considering what he has gone through in the past months. He has not been getting as many PRN dosages of pain meds as he has in the past, which is great. They have even been bringing his pain meds down slowly. Gabe has been resting comfortably and even having long durations of awake time. It is so great to see his little eyes open, taking in the world, or I should say the world above his head. Which is why we put a mobile on his bed, to give a little something to look at. He also enjoys listening to his iPod which has about 14 hours of relaxing spa music for him to listen to. I even modified a set of ear muffs to hold his iPod ear buds. Eat your heart out Apple! He will literally listen to them all day long.

We are now able to touch Gabe and move him without causing too much pain to the little guy. So we are taking advantage of this time to massage his arms to get them down from his side. I know the muscle man pose is sexy but we don't want him to look like that forever. It takes me about an hour of massaging to get his arms down by his side. Then I put his hand braces and believe it or not he actually falls asleep when I do it.

Gabe also got to lie on his tummy for the first time the other day. He loved it!!! He actually fell asleep right after they turned him over. Thank you nurse "L"! Gabe has since been turning over on his tummy on a daily basis. This also opens up parts of his lungs that have never even been oxygenated before, so this is very good for him. It was so cute to see his little back. We have RARELY gotten to see his back so this has been a real treat. Its so weird to say you haven't seen your sons back in almost 3 months. Crazy.

Shannon and I had a conversation the other night about how we haven't gotten to experience any of the normal baby things you get to do when you bring your child home from the hospital. All the little things that we all take for granted. We miss those things that most parents can't stand. I would give anything to wake up in the middle of the night to feed my son, change his diaper and put him back to sleep. All the normal things parents get to enjoy with their newborn, we have missed. This hurts.

The other GREAT news I forgot to mention is that we found out a couple of days ago that Gabe DOES NOT have Glycogen Storage Disease!!! This is incredible news, since this would be a road that would not lead to good things. Way to go Gabe!!!

I Love You my son!

Thank you all for being patient while we take a little longer than usual to get things done. Keep us in your prayers and thoughts.

September 12-17, 2009

Kayla's finally napping; I've eaten, pumped and showered; now I can blog...

I don't know why it's taken one of us so long to finally sit our behind down in a chair and turn the computer on? For many of you, reading Gabe's blog is part of the daily routine, and I'm sure it's been frustrating to log in to G's blog and find that another day had passed without an update. We always have the best of intentions when it comes to blogging, but it seems to be getting harder and harder these days to find time to do anything. I know that there are still 24 hours in a day and 7 days in a week, but it sure doesn't feel that way. I think it's safe to say we officially have NICU-itus. It's when you start to loose all since of time, season, and just life in general. In some ways I feel like my brain has gone into survival mode and is only allowing the bare minimum, the absolute necessities, to be processed. I can make sure Gabe and Kayla are taken care of, there is food in the fridge and the bills are paid. Other than that I can't seem to find the power to do much else. Some days I feel energized and like I can take on the world, and others I just want to curl up on the couch, shut the world out and watch chick-flicks all day. I can't even begin to explain what it feels like to have one of the loves of your life fighting so hard, every day, just to get through that day. Gabe is the strongest and bravest person I have ever met. How he has made it through the things that he has, I have no idea? I've recently started saying that the kid "takes a lickin' and keeps on tickin'" He truly is Super G! I know that I have the strength within to continue battling right along side my Bubba. God never gives you more than you can handle...or something like that. well if that is the case then the Big Guy must have a lot of faith in Jesse and I.

Gabe continues to fight forward. It's at a slow pace, but it seems to be going in a somewhat forward direction. For the last two weeks he has not had any puffing episodes, which is extremely exciting. His lungs are still battling the plural effusions and thick edenemous chest walls, but I have faith that they will prevail. On the 12th he had a rough night and really gave Nurse S a run for her money. We still don't know exactly what was wrong with Gabe, he just wasn't happy and nothing seemed to help calm him down. He's had little spells of this mystery agitation the last couple of afternoons, but gets through them and then crashes out. No major changes have been made over the last few days. Just some little tweaks to the vent here and there. As of this morning he was sitting so comfortably they were planning on weaning a bit on his sedation drips. Nurse S and I gave Bubba a bath on Tuesday and he really liked that for the most part. We gave his coconut a good scrubbing, and found that once you get all the crusties off of him, he really does have curly hair. It dried in the cutest fluffy-spikey-half-loop curls you have ever seen. I can't wait until his shaved patches grow back and I can get my hands on some hair gel. Gabe still has a long battle ahead. I pray that we are finally on the right path and will start really moving forward without anymore major set-backs. At this point I honestly would be shocked if he was home before Christmas. That's alright though, I've already got big plans for pimping his crib for the holidays. Thanks to GG and the super cool blanket Bubba is now sporting, I think he has to be the spiffiest little dude in the entire NICU.

A huge thank you to all of our family, friends and loyal Gabe followers, for all of your love and support. We are truly the most blessed people in the entire world.

September 16, 2009

To all of Gabe's loyal blog followers, our apologies for keeping you all hanging for the last 4 days. Gabe is doing well (for Gabe), we have just been extra busy and haven't had a chance to sit down and blog. Please stay tuned for a nice long update later today....