Wednesday, September 30, 2009

September 30, 2009

Sorry to update this blog so slowly lately. Shannon and I are burning the candle at both ends and we are extremely tired. Gabe has been doing very well and he has just been having little ups and downs. He has been doing very well with his ventilator, requiring less and less pressure as well as a slower respiratory rate. He has also been breathing on room air and not requiring any supplemental oxygen. Woohoo! Every once in a while he will get worked up and require a little more oxygen and pressure. Then he will relax and we will be able to turn it down. Gabe's Albumin level has gotten a little low lately which is requiring them to give him some more blood products to replenish what is lost. His chest tubes were slowing down substantially, down to about 10cc per side in a 24 hour period. That was down from almost 150cc per side last week. Unfortunately his chest tubes have begun to put out a little more, he's up to about 100cc total today. They told us this was going to take months and we would be going up and down, so this is to be expected.
Gabe has been spending more and more time on his tummy lately, which he actually likes. We love seeing his little back and his cute little no butt. His arm stretches are getting easier and easier each time we do them. Yesterday Gabe was upset and was moving his arms and legs more than I have ever seen them move. Even though he was upset, I was happy to see him be moving so much. Nurse "L" made my day when she let me hold him for three whole hours! It was so nice to hold my little man and be so close to him. He is even cuter when you hold him. I can't wait until we can just walk into the NICU and just pick him up and hold him like the other parents get to do. All in time.
Gabe had an eye exam today to check out the structure of his eyes. He definately did not enjoy this procedure. First they dialate his eyes using eyedrops. Then they use some sort of torture tool to hold his eyelids open as a guy with a crazy microscope on a helmet looks into his eyes. Poor little guy! The good news is that everything looked normal and they didn't find any of the signs that they can see with kids that have Noonans Syndrome. Which we will take as a good thing.
Please continue to keep us in your prayers and thoughts.
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Monday, September 28, 2009

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....

Sunday, September 27, 2009

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.

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Wednesday, September 23, 2009

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.

Tuesday, September 22, 2009

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!!!




Sunday, September 20, 2009

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.

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Thursday, September 17, 2009

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.

Wednesday, September 16, 2009

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....

Saturday, September 12, 2009

September 11, 2009

Today was not a good day for Gabe. On the puffiness scale, G didn't look any puffier then yesterday. His ears actually looked a little thinner, so perhaps he is on the road to gettin' skinny again. Unfortunately this was just about the only good thing we can report about Bubba today. When Jesse arrived in the morning G was agitated, his CO2 levels were still high, he was retracting like crazy when he took breathes, and he was requiring PRN's (extra doses) of morphine and ativan. An x-ray was taken to see if his plural effusions were not draining, which would put pressue on his lungs, but they actually looked a bit better than yesterday and are not draining as much as they were earlier in the week (fingers crossed he is beginning to "dry-up"). Dr "B" was curious if perhaps the vent setting was not right for Gabe's current needs and if he needed to be switched back to the other vent. His newer "Big-Boy" vent is able to be changed over to this other setting he felt was more appropirate for G, but is had to be manually changed and no one was quite sure how to manually adjust the vent. Instead of messing with settings they opted for changing Gabe back to the other vent. We were a little concerned about this change because G seemed so agitated, most likely due to air hunger, on the other vent, but it was worth a try. They got him switched over, made a few adjustments to pressures, and what do ya know? He started breathing better and over time his CO2 levels begin to drop. At one point G was so comfortable that he nodded off and let the vent do most the work for him. Poor little guy had a rough day and was exhuasted.

I showed up around 6:00pm and Bubba was still resting comfortably. We stepped out to grab a bite to eat around 7:00pm, at which point Gabe was starting to wake up and was not very happy. We thought he might just need some suctioning and was possibly a bit upset by the noise level in the room. He is very sensitive to noise and it always gets a little louder at change of shift for the nurses (7:00 am and pm). When Jesse got back from dinner, Gabe was just plain old pissed off! He was running a fever, squirming like crazy and crying, well maybe screaming would be a more appropriate description (all silent of course because of his ET tube). Jesse and Nurse "S" pulled all the tricks out of the bag, but none of the usual things seemed to be working. Some blood tests were run to see if he could have an infection. I believe these came back negative. They even took another x-ray to make sure his lungs weren't compromised, and the x-ray looked ok. After trying everything they could possibly think of, Nurse "S" decided it was time for some extra "happy juice." After some morphine and ativan Gabe seemed to calm down. Fingers crossed this does the trick for him. It's times like these we wish, more than ever, that we could pick our little boy up and snuggle him. A snuggle makes everything better.

Thursday, September 10, 2009

September 10, 2009


When I left the NICU around 5pm last night Gabe's CO2 levels were beginning to rise a little and he was starting to show signs of labored breathing. Nurse "C" and I discussed two possible causes for this; the first, they lowered his vent settings a bit earlier in the day, so perhaps his lungs were having to work harder to get used to these new settings (that require his lungs to do more of he work) causing his CO2 levels to rise a bit. The second thought was the left chest tube, wich came out early AM on Tuesday, would need to be replaced because there was still fluid and it was beginning to build up and put preasure on Gabe's lungs.


When Jesse arrived this morning Gabe's numbers were not good and his breathing was very labored. He was also requring extra doeses of sedation/pain killers. Something he has not needed in several days. This mornings X-Ray showed fluid in the left plural cavity. It was decided that the left chest tube would need to be replaced. Early this afternoon the team came in and put the chest tube in. Instantly fluid started coming out. Hopefully this will do the trick. While there, the team put some TPA in the right chest tube to try and clear it out because it appeared to be clogged.


GI came up this afternoon and spoke with Jesse about trying an ultrasound and MRI to see if they can figure out where the leak(s) in his lymphatic system are. They feel it may be coming from him abdomenal area and then moving into his plural cavities. An ultrasound was done this afternoon (should have results by tomorrow) and we are still waiting to hear when G's MRI will be. Finding the source of the leak(s) may not change the course of action, we may still have to wait-it-out, but it may provide more info as to why it's leaking.


You may notice, in today's pic, that Gabe is looking a bit puffier (you can always see it in his face first). This is most likely due to the FFP he is receiving. He is not inflating as quickly as he has in the past, which is a good thing, but puffing is puffing, and it is really a bummer to see this happening again. I'm not sure what Dr "B" and NNP "A" have decided to do in regards to his Albumin levels, FFP and him puffing. I believe this issue is still out on deliberation. Another thing you will notice in today's pic is Gabe's left arm is not in his usual "muscle man" pose. Thank you nurse "L" for working with Gabe today and getting those arms stretched out. We would also like to thank OT "A" for coming down every day to work with Gabe and his mobility. The poor little guy is so stiff from not really moving since the day he was born. Hopefully with everyones hard work we can get Gabe's arms and legs more mid-line, opposed to the "frog" pose they have been in. Also, fingers crossed his hand splits will help to straigen his wrists and hold his fingers properly.


Until tomorrow....

Wednesday, September 9, 2009

September 9, 2009











Happy 10-week Birthday Gabe! And yes...I did torture him with a "Happy-10-week-Birthday" song this morning. Poor little guy, has no choice but to just lay there and listen to my totally and completely off-key singing. I also like to torment him with Twinkle, Twinkle Little Star and any other song I can remember the words too. I have to take advantage of my captive audience because every time I try to sing with Kayla she says, "no mommy, don't do that."
We've left you all hanging without any news about Gabe for the last three days. What can I say? Time flys and sometimes by the end of the day we are just plum tuckered out. I don't think I even brushed my teeth or washed my face before bed last night. We have reached an all new level of exhaustion that I didn't know existed. Ok, enough about us...
When I walked into the NICU on Monday morning my heart jumped with joy when I saw Gabe. I was shocked to see this skinny little boy peacefully snoozing away. There has only been one other time in the last 10 weeks that G has ever thinned out this much, and the best part is, he has stayed consistently skinny for the last three days. My son is shrinking! Yippee! The new Dr "B" is now on rotation and he is amazing. I feel so fortunate to have such a fabulous team of people working with my Bubba. The plan for the last few days has been to try and continue to shrink Gabe. Although he now looks like your average full-term baby, he should not. He was born 8 weeks early, has been under heavy sedation for 10 weeks and is not receiving enough food to really fill out, which means his "full-term" appearance is still edema. Gabe's Albumin levels are low again, due to all the fluid still draining from his chest tube (did have two, now only one, due to the left chest tube some how wiggling its way out in the wee hours of the morning on Tuesday). In the past he has received two different blood products, Albumin and FFP, to try and get his levels back up. FFP has always made him puff in the past so pure Albumin has been used the most often. Dr "B" is not a proponent of the pure Albumin and feels the FFP is a better product. I explained our experience in the past with FFP, but Dr "B" wanted to give it another try. This time we started with just one dose, followed by a Chlorothiazide (diuretic) chaser, along with all his normal daily doses of Lasix. Perhaps this is the magic combo because, other than a little puffing in his ears, Gabe did not begin to puff like he has in the past. Becasue he did so well with the FFP trial on Monday, it was decided he would receive this cocktail every eight hours starting on Tuesday. Again I was nervous, but there didn't seem to be much of any change in his puffiness. This morning his Albumin levels were up by .2 and now sitting at 2.2. Dr "B" once read, and has seen over the years, that an Albumin level of 2.4, or above, seems to be the magic number for Hydrops babies in order to get the fluid off. They are going to try another 24 hour period of the FFP/Chlorothiazide cockatil and see if his levels keep rising. Fingers crossed this works and we can get good Albumin levels without creating more fluid retention. One of the driving forces in getting the fluid off of Gabe is the need to wean on his ventilator settings. With Gabe's thick chest walls it's hard for him to breath on his own. The hope is that once his plural effusions (fluid around the lungs) and chest walls "dry-up" we will be able to work towards extibation and Super G breathing on his own. They are also continuing to chip away at G's morphine and versed drips. Today was Gabe's first day to receive any PRN's (extra doses of pain killers/sedation) in three days. Ever since moving him to the Big-Boy vent Gabe has not required is usual PRN's throughout the day. By this afternoon he was starting to show some pretty strong signs of withdrawl so nurse "C" hooked him up with some happy-juice and all was good. They are also working on his hydracortisone wean, which will take place ove a two week period. In the past they have tried to get him off the hydracortisone in a three day period and it hasn't worked so well. They were originally going to wean him over about a 6 week period, but decided to speed it up a bit since he seems to be handling things pretty well lately. He will let us know if any of his weans are too fast. Gabe has REALLY strong non-verbal skills. Gabe's lungs are still full of all sorts of Goobers. Hopefully once he drys-up and is extibated the goobers will go away. One of his many nick names is now Goob, becasue the kid is just so goobery all the time.
Overall, Gabe has had a pretty darn good couple of days. We are still not completely out of the woods, and have no idea how long it will take for the Chylorthorax or the edema to dry-up (there is still a possability they wont ever), but it made me feel extremely postive when Dr "B" told me, on Monday, that he is "frustrated" but not "discouraged" by Gabe, and those are "two very different things." He seems to feel that we can get Gabe through all of this. Only time will tell, and we have no idea what kind of special needs he may have throughout life, but ya know what? I would rather have a Gabriel with special needs then no Gabriel at all.
All of our love to our family, friends and the always wonderful team at LPCH.

Monday, September 7, 2009

September 6, 2009











Gabe is looking thinner everyday now and we are seeing a side or size of him we have never seen before. Now that he has less edema, he is able to open his eyes more and takes advantage of this more often. Today he was checking everything out and taking in his new surrounding in room four. Nurse "A" decided it was time for a change of position for Gabe and sat him more upright in his new boppy pillow. After we got Gabe situation in his new recliner, he relaxed and was probably in shock to see more than a ceiling above him. Thank you nurse "A" for all your hard work. Gabe also got a new mobile to look at since he has his eyes open now. At first he wasn't too interested but as the day went on he began to check it out more and more. At night, nurse "S" said he was doing great in his boppy and was content watching his mobile spin around. Thank you nurse "S" for keeping him happy and comfortable.




Gabe has a new doctor that is taking over for Dr. "B". We are very excited to see what Gabe will accomplish in the next few weeks. Unfortunately, Gabe was not taking to the monogen that they are feeding him. Every time they feed him, he vomits it right back up. I can't blame him, if it tastes as bad as it smells, I wouldn't eat it either. So for now they are going to withhold feedings and just keep him on the TPN that they have had him on since he was born. The new Dr. "B" said that they will try to feed him a little later after his stomach calms down again. Dr. "B" is very hopeful for Gabe and wants to see him lose some more weight in the near future. This is because he wants to see Gabe get off the ventilator in the near future. Woohoo! Enjoy the pictures and I will update later tonight.

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Saturday, September 5, 2009

Sept 4-5, 2009







Sorry I didn't get to blog last night. Ended up getting in later than I had planned and just passed out. Yesterday was a busy day for Gabe and he had a lot going on. He had a rough night before I got there and was having increasing difficulty breathing. His oxygen saturation was low and his CO2 was high. The poor little guy was working so hard to breath. Nurse "L" was getting concerned and said it was probably because the fluid around his right lung was getting worse. After the morning x-ray they saw what they called a minimal amount of fluid and then did an ultrasound. This was all done early in the morning before he started getting worse. After hearing that Gabe was having increasing difficulty with his breathing they consulted with the radiologist who said there was only a minimal amount of fluid, approximately 35 cc.




This was starting to sound like Groundhog Day all over again. We've been here twice before and each time he proved them wrong with the amount of fluid he actually has. After watching him get worse they decided it was time to act. At first they wanted to just do a blind chest tube insertion without any aid from the ultrasound. We have found through much experience that this does not work for Gabe and we need ultrasound to place the tube in the right place the first time. At first they said they were unable to find an ultrasound machine or someone from Intervention Radiology to place it. I was persistent that they do it with ultrasound and finally they found someone to do it. Thank you NNP "A" for making that happen. As soon as they put the tube in they got approximately 60cc out immediately. As of now he has put out a total of 360cc. I don't think I will have to tell the radiologist, "I told you so". After the tube was place Gabe oxygen saturation went up and his high CO2 level came down. You could tell that he was much happier and wasn't working so hard to breath.






We did however get some bad news out of all this. Gabe's chest fluid has turned milky white which indicates that he does indeed have a chylothorax. This is the condition in which his lymphatic system leaks lymphocytes into his chest around his lungs. This is not good. This will be a long road to recovery we have been told and it should go away on its own with careful diet and fluid management. Dr. "B" said that this will take some time and patience. There is a drug that has been used to treat chylothorax but it has serious side effects and is rarely effective. They have chosen not to try this drug until we have no more options and we agree completely. They have sent the fluid away for testing to see the levels of protein in the fluid and basically tell them what they already know. Just one more hoop that Super G has to jump through to get out of here and we know he can do it. Thank you nurse "L" for all your hard work with Gabe today, you did a great job.






This morning Gabe was looking good and even seemed to drop a few lb's. He seems comfortable now that he is able to breath and doesn't have all that fluid crushing his lungs. The test results were not back from the chest fluid. However, the fluid is really white now and looks worse than yesterday. They said the test we are waiting for isn't going to help in telling us anything we don't already know. They also said that the Glycogen Storage Disease test that we have been waiting forever for is now on the back burner. Dr. "B" spoke with the pathologist and he said that the sample they have is not going to give us an accurate result. This is because the adenoma's in his liver hold onto glycogen and therefore the test would be incorrect. We will just be keeping a close eye on him and see how he does, looking for any signs that pop up along the way. Doctor "B" said after Gabe is a year old, we will be able to tell if he truly has Glycogen Storage Disease. Of course we know he will be just fine.






Nurse "A" is taking care of Gabe today and she is keeping a close eye on Gabe and I. I always seem to cause some kind of trouble when I'm here with Gabe. This morning I wanted to adjust his crib so I could sit next to him on one side. I unlocked the wheel and started to move the crib and suddenly it started jerking violently since I had forgotten to unlock one of the wheels. Poor little Gabe was now wide awake with eyes like saucers and then he puked. Way to go dad! Shake your kid until he pukes. I then got to give him a bath, so at least something good came out of it. Now nurse "A" says I'm not allowed to touch the crib anymore. Way to go Dad!






Keep you posted!

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Thursday, September 3, 2009

September 3, 2009







Today was a big day for Bubba. Today he got his Big-Boy bed and switched rooms. Moving Gabriel is never an easy task, but after a few little bumps in the road, he is now settled into his new bed and new spot in room 4 (a much quieter room). Thank you to nurse "A" and everyone who helped with the big transfer project this morning. Once G was settled into his new bed the rest of his day was pretty uneventful. Bubba is handling the breast milk so well that his feedings are now being increased by 3 mls each time. The best part is, every time the quanity of milk he receives goes up, the quantity of TPN (his only source of nutrition until now) goes down. I'm sure his liver will be much happier with this change, and his tummy. The slow wean off hydra cortisone and all of his narcotics continues. Gabe has shown some signs of withdrawl, which is to be expected, but he is monitored very closely to make sure he is not experiencing horrible pains. He will be a bit cranky until all of the drugs are out of his system, so we will have to be patient during this process. Poor little guy!

I am back home now and on Kayla-duty. Jesse will head up first thing tomorrow morning to spend a few days with Gabe. It's the old kiddo-switcheroo-day again. Jesse is ready to go and spend some time with our very quiet son after spending several days with our stubborn 2-1/2 year old. he he...gotta love toddlers!

Wednesday, September 2, 2009

September 1&2, 2009 - 2 Months Old




Yesterday (September 1) Gabe’s day started out with a lovely “Happy 2-Month Birthday” serenade from Mom. I actually torture the poor little guy with a “Happy __-week Birthday” song every Wednesday, since that is his weekly Birthday, but yesterday was extra special because it marked an entire month. It may sound like a totally dorky thing to do, but when your kid wasn’t expected to survive his first 12 hours of life; every day, week, and month are a really big deal.

As I'm sure you've read in the blogs from the last fews days and weeks, there has been a lot going on with Gabe. Some of which there are answers and solutions too and some that are still complete mysteries. Yesterday we sat down with Dr "B" and several other folks to discuss what we have learned about Gabe and what can be done for him going forward. We were pretty nervous going into this meeting because we weren't sure which direction the conversation would take. Would we be talking about things that can be done to help Gabe get better or would we be discussing the fact that we are out of options and nothing can be done? This has been and will continue to be are biggest fear until Gabe really starts to make some huge leaps forward. We started out the conversation with excitment at how well G was responding to his new ventilator. He seems to be very peaceful on the new vent, is not requiring as much sedation as usual and is actually having more awake-times then ever before. His blood gasses are looking great, and with the assist setting he is on his lungs should start getting stronger. Bubba is tollerating his breast milk feedings very well so they are going to start increasing the amount he is receiving. The goal is to have all of his nutrition coming from the breast milk and not the TPN. TPN is hard on the liver and Lord knows the kid has enough going on with his liver. In regards to his liver; it looks is though we will never know exactly what the masses are. The final report states that two doctors feel they are adenomas and two feel they are focal nodular hyperplasia. They are pretty much the same thing; benign and not keeping his liver from functioning. What there is still a big question mark about is the glycogen storage disease. The stains are still not complete, and Dr "B" is hoping to have an answer by Monday. Please say a little prayer that these stains come out negative, because if he does have glycogen storage disease that opens up a whole new can of worms, and we just don't want to go there. We discussed the MRI finding again and are very happy to hear that other than being underdeveloped (which is to be expected of a child born 8 weeks early, and under heavy sedation and an ET tube for 9 weeks) everything else looks as it should. Another part of Gabe looking as they should, are his lungs. We are happy to report that for the first time in his life Bubba's lungs are actually looking pretty darn good. The left lung is a bit smaller, other than that they seem to be on the road to recovery. Now if we can just get that liquid to stop building up around them and get more edema off his cheast walls, we can start talking extabation (no more breathing tube). They are going to begin to slowly wean G off of hydra cortisone and all of his pain/sedation meds. This is going to be a long, slow process, so we are probably looking at 6 to 9 weeks before Bubba is off of all of these things. Yes...I did say 6 to 9 weeks. Gabe will most likely be in the NICU for at least another 2-3 months. Hydrops is a very long battle. We have heard of some babies taking 5-8 months to recover, and we have heard of those that are not able to recover at all. It is still very scary to think that we do not know exactly what the future holds for our little boy. We can only hope and pray that Gabriel is able to recover from his hydrops and all of the other things he is battling. At the end of the meeting I dared to ask the question I knew no one could give me the answer too, but I just had to ask. I wanted to know if there was hope for Gabe, and this is what we were told: because of the positive progress made over the last few days we can be "cautiously optomistic." Considering that fact that we weren't sure which direction this meeting would be taking, this was a very positive note to end on and has given us some hope for what the futue has instore for Gabriel.

Today, September 2, was a pretty mellow day for Gabe. He spent some time jamming to his spa music; ate "real" food every three hours, had a nice dirty diaper for mommy and nurse "L," and got to be snuggled in his mommy's arms for 2 hours. Thank you nurse "L" for taking the time to pack Gabe up and let me hold him for so long. There are not even words to express how amazing it felt to hold my little boy. I get teared up just thinking about it.