July 31, 2009

We missed a day and were sorry that many of you were tuned in and didn't get an update, so here we go. A lot has happened over the past two days and we are excited and worried all at the same time. Gabe's lungs are doing wonderful! The new mode on the ventilator along with rigorous suctioning of his airway has completely opened up his left lung and even his right looks better. For us, this is amazing news. Now he will remain on the ventilator instead of going back to the Russian cosmonaut hat. The other good news is that Gabe had his first eye exam today and the doctor said it was good. Our nurse "C" was high fivin' the eye doctor with the news and it made us feel good. Nurse "L" tonight said that he tracks things in front of him really well and nurse "B" taped these shapes onto the inside of his isolette so he has something to look at.

Also found out that his heart looked great on the ultrasound. They said that he has what is called a PFO, can't remember exactly what it means right now. But basically there is a hole between your right and left atriums and it is open when you are inside and then it closes once you are out. However, in about 25% of people, it never closes. His has not closed, which is no big deal. They just said that he can't scuba diving, which is just fine with me. That is the least of my worries right now.

Then they dropped the bomb that sent my stomach into knots immediately. He is scheduled for biopsy surgery on Monday morning at 8:30 a.m. So they will keep him on the ventilator since they need him on that anyway for the surgery. During the procedure which will take place in an operating room, they will take a small portion of the liver and send it off for analysis and then it should take about two days to get the results. Those will be two long days. The results will tell us the plan from there. I don't want to get to far ahead of myself as I usually do and worry about things I don't need to. We just need to take this one step at a time right now and I will fill you in as we go instead of worry you about a bunch of maybes.

On a different note we have moved Kayla in with us for a hopefully more permanent stay over at "Ronald's House", as Kayla calls it. Today she got to play on all the wonderful play structures that they have here and she was in heaven. She also loves the activity room with all it's toys and of course there is the "Nemo" fish tank that she loves. She will run herself dizzy chasing the fish around and around the tank. It's hilarious to say the least. We love how no matter what's happening, Kayla is constant entertainment. Thanks for tuning in and we will talk to you soon.

HOLDING GABE FOR THE FIRST TIME!!!

July 29, 2009

Today was a BIG day for Shannon and I. First I will give you the update on were he sits and then we will get to the good stuff. The food that they have been giving Gabe didn't agree with his stomach and he gave it back to them, if you know what I mean. His stomach also distended from the feedings, so they have discontinued the feedings for now until they figure out what is going on. They mentioned that sometimes they just take a little while for their gut to start moving the food through. I know that he will get through this, he just needs a little time. On the morning x-ray his left lung was still collapsed but did show what they say looked like a little improvement, but I couldn't see it. They did schedule a bronchoscopy for tomorrow afternoon if there is still no improvement tomorrow morning. On that same x-ray they saw that there is no more re-accumulation of fluid on his right lung after they removed that chest tube, which is awesome. Gabe has been working extremely hard to breathe with the ventilator and just never seems to cooperate with it. Today they had an idea about changing the mode of the ventilator, which ended up working excellent. It basically lets him initiate the breath and then supports his inhalation and if he misses a breath or stops breathing it will detect it and give him the breathe. They rarely use this setting but it is actually working well for Gabe and he is looking very comfortable breathing for a change. Ok on to the big news.

The big news of the day was that SHANNON GOT TO HOLD GABE FOR THE FIRST TIME!!!!
Our WONDERFUL AND INCREDIBLE NURSE "B" had to change his isolette, which is his little spaceship bed. This requires moving him out of his bed and that means someone has to hold him during the change. Shannon came back over to LCPH with Kayla and we had an incredible moment that changed us both. It was amazing, it only took 30 days to finally hold him. We thought it would be much longer. Nurse "B" had to untangle and move about a hundred things, basically moving the entire bed onto Shannon. Shannon was so excited to finally hold our little man! It brought tears to her eyes as she finally got to hold him and sing to him. In all she got to hold him for about forty minutes. We look forward to being able to do this again very soon. Thank you nurse "B" for everything! You made our day!
Also, Kayla didn't get too jealous as Shannon held Gabe. Of course we had to bribe her with two lollipops, a handful of tick-tacks and a new toy horse. But it was worth it.
What a day!!!

July 28, 2009

Tired. That word doesn’t even begin to describe the way that Shannon and I feel mentally. This is definitely one of the hardest trials in life that either of us has been through. Seeing our child sick and not being able to do anything about it hurts us in a way that cannot be put into words. Despite everything that is going on, this little man still puts a smile on our faces every time we see him. He truly is a miracle and he has touched us both in a way that is indescribable. Shannon and I hold each other up everyday working together to get through this and we could not do it without all of your help and love. Please keep the prayers and thoughts coming to our little man. Before I sign off at midnight yet again I would like to share a few updates and pictures of the little man today. Gabe’s left lung is still collapsed and they are working to get it opened up again and hopefully we will see some good results in the morning. He has continued to get his food every eight hours and he seems to be tolerating it very well. The big news for the day is that they removed the chest tube out of the right side of his chest. It hasn’t been draining any fluid over the past two days and they decided to pull it out and see how it does. This means we are on step closer to holding our little man. Every time Shannon and I see Gabe, we just want to pick him up and give him the biggest hug and never let go. It hurts us so much to not be able to hug him or care for him. We look forward to that day and hopefully it won’t be too far off. Nurse “S” is taking care of Gabe tonight and she is doing a wonderful job of keeping his airway clean and getting those secretions out of his lungs that have been giving us so many problems. They mentioned tonight that if they don’t see a change in the right direction by tomorrow morning they will be ordering another bronchoscopy. We love you Gabe! Hang in there my son.

Gabe's First Meal!!!

Gabe's First Concert!!!

July 27, 2009

Super Gabe is hanging tough and impressing us all. He did a great job yesterday showing us he could breathe on his own and we were all so proud of him. Unfortunately his left lung collapsed again and now we are back at trying to get that lung re-inflated. Nurse “A” got to spend the day suctioning Gabe and giving him breathing treatments. Nurse “A” also gave him his first “solid” food ever. He got some synthetic milk (not formula) that smells terrible and once in your nose doesn’t go away. I had a close encounter with the concoction and it stinks. Gabe seemed to like it though and didn’t seem to complain too much, but that’s because it bypassed his taste buds thank God and went straight to his stomach. They are starting him out with small amounts every eight hour and if he tolerates it they will increase the amount. What Gabe doesn’t tolerate so well is the decrease in his pain meds. He’s turned into a little junky and we have to go very slowly, but he is getting better. Nurse “S” has Gabe tonight and she is starting him on the Mucomist that last time worked great at breaking up the secretions in his lungs after his bronch. She mentioned that if they don’t start to see results in the next couple of days they may plan to do another bronch.
Gabe also experienced his first front row seat to a concert today and the tickets were free. A harpist came in next to his bed and lulled him to sleep. Heck, even Shannon and I found ourselves beginning to feel the effects and began to feel sleepy. All in all it was a good day for the little man despite a few setbacks.
Shannon and I did experience one scare today that we think will turn out ok. We walked into the room to find that they were doing an ultrasound of his heart. Then we found out that they had heard a heart murmur before and wanted to check and see if he had any issues. We later saw the report and didn’t see anything in there that said he had any definite problem. However, we shall hear the translation of the report from the doctor in the morning. The report is almost like trying to read another language. We will update you in the morning about what we hear. Take care and thank you all again for your continued prayers and support. It is very greatly appreciated!

July 27, 2009

"Gabe is a rockstar!" That's what nurse "C" said this morning about Gabe's incredible five hours breathing on his own and we have to agree. Today is another big day for the little man. The staff will be putting in an feeding tube and give him his first real meal. Poor kids got to be starving, he has hadn't anything solid in a month. Hopefully it's a good flavor like steak and potatoes. Nurse "A" will be working with Gabe all day trying to re-inflate his left lung again since it collapsed yesterday during his breathing attempt. Slow progress, but at least we are moving forward. It may be two steps forward, one step back, but at least we are moving forward.

Gabe On Facebook!!!

Our little man now has his own Facebook Fan site thanks to his awesome uncle Shawn. Go check it out and put something on his wall. We are reading Gabe his fan mail now until he picks up reading. Here is his site.
http://www.facebook.com/advertising/?pages#/pages/GABRIEL-LEE-AGUILAR/103936346708?ref=nf

Gabe On The NEWS!!!

Gabe is not even a month old and he's already been on the news. Well you really can't see him but you can see his awesome crib and his nurses working with him. Check out the video link and about two-thirds of the way through the video they mention Lucile Packard Childrens Hospital and the crib closest to the camera with the red cover is Gabe's crib. The next scene you can see all of Gabe's nurses keeping him comany. We didn't even know he was famous until a few days later when the nurses showed us Gabe's first steps into celebrity status. Here is the link, hope you enjoy it.
http://www.ktvu.com/news/20162920/detail.html

Gabe's First Pacifier

July 27, 2009
Nurse "L" gave Gabe his first pacifier today! Gabe of course enjoyed it for a few minutes but then spit it out. His sister Kayla would be so proud of him for his first attempt. She is of course a binky connoisseur and will probably be steeling his once we get him home.

July 26, 2009

At about 8 pm this evening the doctors decided to give Gabe a break and take him off the little mask that was forcing air into his lungs and switch him back to the breathing tube. Gabe put up a good fight and lasted about 5 hours of breathing on his own with a little help. Not to bad, nurse "N" said that some kids only make it about 1 hour and have to be put back on the breathing tube shortly after switching. Apparently many kids have to make numerous attempts at this before being successful. So we are not too worried that next time he will pull it off. Nurse "L" did an awesome job keeping a close eye on Gabe and making sure his transition off the breathing tube went off without a hitch. Nurse "A" did an impromptu "toss the tube" ritual and we will have to do again later this week. I got a kick out of Gabe's little hat they put on him to hold the new mask, he looked like a little Russian cosmonaut ready for outer space. Tonight Gabe will get to take a break and let the ventilator help him out. Tomorrow is a new day and we look forward to more success. Shannon and I are always amazed at what this little man does everyday and we cannot even begin to tell you how much both of us have learned from this little man and this whole experience. We want to thank you all for your love and support of our family through this difficult time.

July 26, 2009

Today is a big day for the little man!!! The doctors shocked Shannon and I when they told us that they wanted to take the breathing tube out and see if he could manage on his own. Our first response was, WHAT??? But then they told us that they think the reason he is breathing so fast all the time is because he is trying to breathe over the ventilator and they feel this is a good time to try and see how he does. I am very apprehensive about this and pray it all goes well. The plan is to remove the tube and then put a small positive pressure mask on him that will give a constant flow of air to his lungs. You can compare it to driving down the freeway, sticking your head out the window and opening your mouth and breathing in. If all goes well they will keep him on this for a few days and then remove it and see how he does on his own. If this doesn't work, they will put the breathing tube back in immediately. So they say I shouldn't worry. Right. I hope to update you with some great pictures and video of him on his new mask very soon.

Gabe - Before and After

We have been asked many times about how “puffy” Gabe was before and how “puffy” he is now. Most are curious about how far he has come and don’t understand what we are describing. They say a picture speaks a thousand words, so we decided to share with you some pictures of Gabe that we had previously not been posting because we didn’t want to scare anyone and at the time things were minute by minute. When he was first born the poor little guy looked like a mini Michelin man because there was so much edema. But now he is a changed little man and we hope that we don’t have to witness that again. Shannon and I were going through pictures of him the other night and our jaws dropped at the pictures of him then and now. It was almost as if the little guy had gastric bypass surgery and shrunk overnight. In fact, we will leave the NICU late at night and come back in the morning to see that he had shrunk even more overnight. People have commented that they don’t see how he has any more fluid to lose. But we have to realize that he is a preemie and he should be a lot smaller than he is now. Most people are comparing him to what they know is a normal sized baby at birth, which Gabe almost looked like at one point. These pictures are a wonderful example of how far our little trooper has come over the past few weeks. We pray that he will continue to lose this extra fluid so that he won’t have to work so hard to breathe. Also, Shannon and I are really excited to see his little features that are starting to come out of all the swelling and puffiness. The pictures above are from his first couple days and are a testament of how far the little man has come.

July 25, 2009

We walked in this morning to see that Gabe had shrunk even more! This is awesome, he is looking like a little boy now. It's really incredible for Shannon and I to see this little man improving so quickly. He is opening his eyes more and more and we are really beginning to see all of his little features. The pulmonary doctor came in this morning and he checked Gabe out and said that his left lung is sounding much better and is really starting to open up and Gabe is starting to get all that crud out of his lungs. During rounds this morning the team talked about how his ventilator settings are going to continually be brought down, which is great. Slowly working towards getting off that ventilator. Yesterday Gabe got to begin what is called buccel feeding, which is a small amount of breast milk that is put inside his cheek just to give him a small taste. This makes Shannon very happy because we have enough frozen milk to keep Gabe going until he is 2 I think, just kidding. The freezer at home is completely full and we our now filling a freezer in Grandpa Reynolds garage.
Gabe's pain medications were also brought down again today and they are still keeping a close eye on him so that he doesn't go through withdrawals.
The doctor also said that they may take the vacuum off the right chest tube tomorrow and if no more fluid comes out they will remove it.
Shannon and I are so excited with his progress and look forward to what else this little man impresses us with. Thank you all for all of your prayers and thoughts!!

July 24, 2009

Today was a great day for the little trooper. After the bronch his left lung is about halfway inflated. His lungs are improving every hour and he continues to impress all of the hospital staff. Gabe's OG tube that removed air from his stomach was also removed, one less thing he has in his mouth and throat. He also had his catheter removed and I'm sure he appreciates this, I sure would. He began his ween off the Morphine and Versed pain medications today as well. They will be keeping a close eye on him to make sure he doesn't go through withdrawels. He had a great day with his nurse "L" and always tries to be a good little boy for her. Good work Gabe, we are so proud of you and all the progress you are making.

July 23, 2009

Today was Gabe’s big lung cleaning day. It started off with the doctors removing his ET tube and replacing it with a larger and cleaner one. The reason for the larger tube was to accommodate the fiber optic camera that would go down it. As a paramedic not many things bother me, but as a father it was hard to watch them try a couple times to get the new ET tube in his airway. It’s difficult to stand back and let your kid not breath and not be able to do anything about it. After the new ET tube was secure, the pulmonary team stepped in and inserted the camera to see what they could find. They immediately encountered secretions when they turned the camera to look down the left lung. They would continue to clean out his lung as much as they could before they decided to give Gabe a break. Gabe was a little trooper and was able to do the procedure with his normal Morphine and Versed cocktail and not have to be paralyzed. The pulmonary team gave Gabe some mucus de-clogger called Mucomist which he will continue to get over the next few days. After the team was done, they were able to hear junky lung sounds in Gabe’s left lung. But at least they were lung sounds. Woohoo!! The pulmonary team will be back tomorrow to reassess whether Gabe will need another bronch procedure.
W e also received some great news from the Genentics team. Gabe’s test looked great and there was nothing wrong with his genetic makeup. Except that the poor fellow is my son and you know what that means – a little Jesse running around.
We also got Gabe’s ultrasound results from yesterdays look at his abdomen and the two tumors on his liver. We were not shocked and were expecting to hear what we did. The tumors on Gabe’s liver are growing, just like he is. But the good news is that we are heading in the right direction getting his lungs on track and then we can get down to the MRI room and find out what is going on with these tumors.

July 22, 2009

Shannon and I had such a late night last night at the NICU that we slept in and almost missed the doctors rounds this morning. We sure have been burning the candle at both ends lately and we have got to start getting to bed a little earlier than midnight every night, yet here I am. We came in this morning just in time to hear the days plans. They had been doing some very aggresive airway suctioning throughout the night and into the morning, dislodging a large amount of secretions. An early chest x-ray showed no improvement, so it is time for the bronch. They continued doing aggressive suctioning of his airway throughout the day. However, this was not enough to get that stubborn left lung re-inflated. So at 3 p.m they took one more chest x-ray to see if the lung had improved at all and unfortunately it had not. Doctor "C" decided that it was time to call the pumonary team down to see what they thought. A doctor met with the Gabe's team and decided that a bronch was the best plan to help open up his lungs. He said that first they would have to remove the endotracheal tube that Gabe is breathing through and replace it with a bigger and of course cleaner one. This will allow the camera to pass down the tube without the chance of getting stuck. Once they are in the lung they can take a look around and then start to clean out the inside of the lung and then try to re-inflate it. The doctor described it as a balloon, the first few puffs into the balloon are difficult but after that it is easy to blow up. He made it sound so simple and straightforward but it still didn't calm my nerves about the whole thing. So tomorrow at 11 a.m. Gabe's team will begin his bronchoscopy.

Gabe is actually doing a wonderful job breathing on just one lung. As our wonderful nurse "B" said, "imagine what he could do with two lungs".

Gabe also had an ultrasound of his abdomen this morning to take a look at the tumors on his liver and see if they have changed in size at all. Unfortunately we still have not found out the results of the ultrasound yet.

Gabe was resting comfortably in his little spaceship all day today. It is amazingly quit and warm inside that thing and he really likes it. Shannon and I are glad that he is more comfortable but unfortunately for us it is much harder to socialize with him throught the little doors on the side.

It's going to be a big day for the little man tomorrow and I can't wait for him to be able to breath through both lungs.

Keep him in your prayers!

July 21, 2009

Shannon and I started the day off with much anticipation and worry. We didn’t know what to expect at the doctors morning rounds. The plan was to get Gabe on the traditional ventilator and see how he would do. From there we would just see how things would go throughout the day. At about 11 a.m. Gabe successfully made the switch to the new ventilator without any trouble. In fact he looks much more comfortable and is no longer fighting the oscillator. He isn’t making his scrunched up painful face anymore and that makes us much happier. His oxygen saturation is remaining high and his CO2 levels have stayed in range all morning. Doctor “C” wants to leave Gabe on the ventilator and give him a chance to adjust without stressing him out too much more. She wants to monitor his progress and closely watch the left lung to see if just putting him on the new ventilator will open up the lung. It would be great if this works because Gabe could then dodge a bronchoscopy. However, if the lung doesn’t inflate they will have to do the bronch either tonight or tomorrow.
Gabe is happy being off the oscillator which should actually be called a shake-a-lator, since his whole body would jiggle from the ventilations. He opened his eyes and looked around probably shocked that everything was still and not bouncing. Shan and I are so excited to see the little man resting comfortably. Nurse “L” closed the lid to his bed today for the first time. It’s probably a lot more quite in there without the sounds of alarms going off in the NICU. I think the nurse really closed it to protect Gabe from me harassing him while he rested. I’ve been told I talk a little bit and this was probably all the nurse could do to save him from his dad.
I was also able to mask up and assist the transport nurse who places PICC lines as well. He did a great job explaining how the procedure was done and asked me to help out. It made me feel that I was actually doing something for my son other than standing there worrying. I was also able to rub some ointment on his left leg and foot to help some of his dry skin. It always makes Shannon and I happy to help in any way we can since we are unable to do the things that other parents get to do at home.
Stay tuned later for more information this afternoon. Enjoy the pictures and videos. Take care.

July 20, 2009

Gabe has continued to fight the oscillator through the night and the staff has had to continually give increasing dosages of Morphine and Versed. I asked the doctor during rounds today if it could be possible that he is experiencing increased pain because the tumors were getting bigger. She said she didn’t think so because his abdominal measurements weren’t getting any larger. It has been over a week since the last ultrasound and doctor “C” said she would most likely repeat the ultrasound this week. I found out today that they cannot do the bronchoscopy if he is on the oscillator. He must be on the traditional ventilator if we are going to do this procedure. This means they must slowly lower his airway pressure over the next few days below 11, right now he is at 12.5. The problem is that he is not tolerating the lower pressures that well. They will come down and then have to go back up again because his oxygen saturation will go down and his CO2 will go up. It’s frustrating to say the least because the traditional ventilator is going to make the biggest difference for him. The other option was to completely paralyze him but they don’t want to consider this right now since his numbers have been doing so well. Hopefully we can safely get those numbers down and get him to the regular ventilator soon so we can get an MRI and find a cause of the hydrops. They are not planning on taking him off the steroids just yet because he still really needs them. Another worry is that Gabe’s ART (arterial) line isn’t working that great and they will have a difficult time finding another spot since he has run out of room for lines. Nurse “A” is doing a great job taking care of little man and know he is in good hands today while Shan and I head home for a few hours to drop Kayla off.
Update – Just left the hospital and our wonderful nurse “L” is looking after little man and he is hanging in there. His numbers are still holding strong and they are lowering some of his ventilator settings. We just found out that his left lung is completely collapsed. They have been working so hard over the past week to re-inflate this lung but it just doesn’t want to work for us. Doctor “J” said that they don’t have any more options except the bronchoscopy. However, it’s of course just not that easy. They must first get him on the traditional ventilator and he must be stable on it for them to attempt the bronch. They had contemplated putting him on the traditional ventilator tonight but held off until possibly tomorrow. Doctor “J” is wonderful and is strongly recommending to the day shift that Gabe needs a bronch sooner than later. So we shall see tomorrow morning at the doctors patient rounds what the plan is. Also found out tonight that Gabe has an ultrasound to look at the two tumors on his liver and see how they are looking.

Shannon and I got as special treat tonight as well. Gabe opened both his eyes and kept them open for the longest time. We were able to talk to him and look into his eyes, it was amazing for us. It brought tears to my eyes to be able to do this for once. He was actually calmed by seeing us, hearing us and feeling us rub his little head. I found his "spot" that he likes on his head. When you rub him right above his right eye, he calms down and starts to fall asleep. If you stopped he would look up at you like "hey, why did you stop?". Very amazing moment for Shannon and I.
Please keep Gabe in your prayers and thoughts, the next few days are going to be big for the little man.

Gabe's First Haircut

Gabe Having A Dream

July 19, 2009

Gabe started out the day not giving anyone any trouble. His left lung continues to be in collapse, so they decided to do an ultrasound to make sure there was no fluid around the lungs that they were missing on x-ray. Luckily they didn’t see any extra fluid and Gabe escaped another needle for now. Gabe being the little fighter, is constantly fighting the oscillator that is breathing for him. He tries to breathe on his own which increases his CO2 levels. This could be because he is either uncomfortable or in pain. So they have continually increased his Morphine and Versed doses significantly over the past couple of days to keep up with his pain. Today the nurse actually ran out of her allowable amount and had to go and ask for more. The poor little guy is on enough pain meds to take down a small rhino. I told the doctor I was worried he may be the youngest NA (Narcotics Anonymous) member ever. She replied his first works may be “Hello, my name is Gabe and I’ve been clean for one week.” We had to have a little laugh out of all this. On a more serious note, the doctor told us this morning that if we don’t see an improvement in his left lung soon we may have to do what is called a bronchoscopy. I probably spelled that wrong but oh well. Basically they send a small tube with a camera down his endotracheal tube and take a look around to see why his lung is collapsed. If they see any blockage they can use the tube to clean and suction out any secretions. Hopefully this will allow his lung to re-inflate and get us back on the right path. As I left tonight Gabe was still breathing too fast and they were contemplating what do we do next. I thought my two year old wore me out but this little guy is really wearing Shannon and I out always worrying about “what do we do next”. They said they may have to completely paralyze him if he doesn’t start to cooperate. Hopefully the medications do what they are supposed to and we hear good news in the morning. Gabe gave me a little half smile tonight, so I hope that means he is going to cooperate.

July 18, 2009

We came back this morning to find that the IV that was in Gabe’s coconut was out and he had a new one in his foot. Gabe had a pretty mellow night and didn’t give the nurses too much trouble. We did see Gabe have what looked like a dream and video recorded it. Gabe also opened his eyes again for us and that always makes us feel good. Shannon and I were able to spend some time with Kayla as well. Today we went and visited Evan for his first birthday and wished uncle Shawn a happy birthday as well. We all needed a few hours out of the hospital and it felt great to be outside.

Little Details....

Ok...so here is the info I know all you ladies are interested in:

Gabriel (aka Gabe, Bubba) has black hair; brown eyes; Daddy's lips, ears, fingers and toes; Mommy's lighter skin, birth mark on the forehead and stubborness. He is annoyed by the constant noises of the NICU and tries to join in when the other babies start crying. Of course, with a breathing tube, no cry can come out, but he sure does try. Gabe already knows Mommy and Daddy's voices and starts to move a bit when he hears Mommy's voice (I love it!). We have not been able to hold him yet, but once he's on the conventional ventilater and his chest tubes are removed, we will finally get to snuggle with our little boy. For now we can talk to him and touch him. I love to sit next to him with my finger in his hand (he usually squeezes my finger pretty tightly).

We are currently staying at the Ronald McDonald house, which is only a few minutes away from the hospital. Not wanting to be too far from Gabe in his condition, we have spent most of the last few weeks in Palo Alto. With only a few visits home. We haven't seen Kayla as much as we'd like, so we are going to try and bring her up to Palo Alto (she can stay with us at RMD House) more often and make trips home more often. It is hard to be Mommy and Daddy in two places at once, but we are going to try.

July 17, 2009

Today was a better day for little Gabe. His oxygen levels were higher and his CO2 levels were lower, all good things. The collapsed left lung was looking better and the collapsed upper portion of the right lung was improving as well. His antibiotics have been discontinued since his blood work shows no infection. Yeah! He will continue on the steroid until next week and then they will wean him off it slowly. Today Gabe also got his first haircut, not by choice. He has had so many IV, PICC lines and arterial lines that they are just running out of good spots. Today the IV in his foot was no longer good, so they needed to start a new one. The only good sites left were on his head, so off came some hair. The nurses were kind enough to let me use the electric razor to remove the hair on the left side of his head. They then took the hair and placed it in a bag and said we could keep his first hair cut. Unfortunately the spot I shaved didn’t have a useable vein, so then they shaved the front of his head. Poor little guy. Now his head looks like one of those dogs that had a bad day at the vet. Shannon filmed while I shaved and we will have it up in blog soon. Today was our fifth anniversary so we went out to dinner for a change and of course we couldn’t wait to get back and check on our little man. Tonight Gabe is in the hands of wonderful nurse “H” and pray he will give her a nice night. See you tomorrow.

July 16, 2009

The little man had another rough night. His oxygen levels were going up and down along with his CO2 levels. Both his lungs continued to be in some state of collapse, something they call “roaming” collapse. Early in the morning his chest x-ray was showing some fluid around the right lung. This was the side that the right chest tube came out. Doctor “J” decided that it was time to put another chest tube in to get rid of that fluid. Gabe continued to have mild to moderate collapses in his left lung all day and minor collapse in his left lung. Fortunately they were able to increase his Morphine and Versed dosages to help keep him comfortable. Shannon and I noticed that with the increase in pain medications, Gabe wasn’t making his painful face. Another upside of more pain medication is that Gabe doesn’t fight the oscillator (ventilator). Instead he relaxes and lets the oscillator do all the work. Gabe’s oxygen and CO2 levels went up and down all day. As of 11 p.m. his O2 levels are getting better and his CO2 levels are holding steady. Unfortunately they are going to continue to turn him every 12 hours and he absolutely does not like this. It can take him one to three hours to recover from a turn. The plan for tonight is to do as little as possible and let him rest. We will continue to call over to the NICU throughout the night to check on his status. Please continue to keep Gabe in your thoughts and prayers. Thank you all.

July 15, 2009

It was a rough night for Gabe last night. His oxygen saturation and CO2 levels went up and down all night. The staff was constantly trying to fine tune the oscillator (ventilator) all night. When we arrived in the morning we found that his chest tube on the right side was no longer in. We initially thought that it was removed but were informed that it fell out, possibly while they were turning him. Today was another stressful day for Gabe, his nurse, Shan and I. Gabe's CO2 levels continued to be high throughout the day. He continued to receive his steroids, fresh frozen plasma (FFP), pulmazide (breaks up secretions in the lungs), albuterol and blood. Today Gabe was very irratable and looked like he was pain. He was given more Morphine and Versed to keep him comfortable and keep him from fighting the ventilator, which he likes to do. He continued to fight a collapsing left lung and the top of his right lung. Before we left tonight, the last x-ray showed his left lung with a large area of collapse and the top of his right lung collapsed. Doctor "J" will be keeping a close eye on him through the night and told us that he will place another chest tube on the right side if his numbers don't get any better. He also stated that if he places a new chest tube on the right, that he will place an new one on the left. This is because the one on the left is looking like it might be a little plugged up. We were told that Gabe will be totally knocked out for this procedure and will be kept comfortable. Gabe's edema seems to be sticking around despite the fact that he is still peeing like crazy. I have to say that I am very impressed with the staff at Lucile Packard's. Our wonderful nurse"B" takes excellent care of Gabe and us. She always sticks up for Gabe and is a wonderful patient advocate. Plus she is fun to talk to and makes the days much more bareable for Shannon and I. We are praying that Gabe has a good night and we look forward to seeing what kind of progress he makes in the morning.

July 14, 2009

Gabe’s numbers went up and down throughout the night. The plan for the day is to help Gabe’s blood pressure by giving him some more blood. They are stopping the Dopamine to help with the blood pressure. They now think that he no longer has an infection but are going to continue to give him a few heavy duty antibiotics. They have placed Gabe back on a Steroid that will help him in every area. He was previously on the Steroids but they were removed and they think that is why Gabe took a U-turn. He will also be getting what is called Albumen or Fresh Frozen Plasma (FFP), this is a blood product that will help Gabe with his “leaky” pipes. This will keep fluid inside his vessels and should help them from leaking into his body which causes the edema or puffiness. Gabe will also be placed on Lasix, which is a diuretic and will make him urinate more to get rid of all the extra fluid. The internal pressure on his ventilator will be turned up to help with his high CO2 levels. Gabe was turned today which is pretty much just putting his head at the foot of the bed. He definitely doesn’t like this because it always takes about 3 hours for him to recover. Gabe also had a IV stop working and they have started another one. He now has two chest tubes, two PICC lines, one arterial line, a catheter, an OG tube and ET tube. The poor guy looks like a science experiment. Hopefully tonight will be a night of rest for Gabe and he holds steady and continues to improve.

July 13, 2009

Gabe has been struggling with a collapsed left lung for the past five days. He is now back on the oscillator which is a big setback. His CO2 levels have been a bit high which is causing his blood to be acidic. Doctors are starting him on some heavy duty antibiotics for a possible infection from and unknown source. Gabe’s CO2 levels and O2 levels fluctuated throughout the day and night. Gabe’s edema (fluid on his body) is coming back and he is getting a bit puffy. Gabe also received a couple rounds of blood to help with his low blood pressure, since they are taking so much for constant testing. They also had to give him some Dopamine to help him with his blood pressure

Gabriel's Journey

“What doesn’t break you only makes you stronger…” This was the Bible verse Shannon and I saw on a church sign on the way home from having a bad day at the hospital. We thought this was very fitting for our journey thus far. It has been a journey that feels much like a rollercoaster with all the ups, downs, turns and even some upside downs. Going through this experience has been much easier for Shannon and I having the love and support of our family, friends and fire department family. We have had little time to share with everyone the details of Gabriel’s journey to this point and feel you all deserve to hear where we have been and where we are going on Gabriel’s journey.

As many of you know Gabe and Shannon had a rough start. Early on in the pregnancy doctors had thought that Gabe had Downe Syndrome. After an amnio we learned that all of his chromosomes were normal and he did not have Downe Syndrome. What the doctors were seeing was the beginning stages of Hydrops. This condition, in short, is an accumulation of fluid in two places on the body. Gabe initially had fluid accumulating in the skin on the outside of his body, around his head, neck and chest, and Shannon had large amounts of amniotic fluid (produced by Gabe). At the same ultra sound we also learned that Gabe had a mass growing on his liver. Over months of countless ultrasounds, fetal non-stress tests and appointments with specialists we watched Gabe, and Shannon's fluid levels very closely. Gabe was growing like a normal baby but Shannon was growing like she had triplets. At one point the fluid in Shannon’s belly became so great that it required what is called an amnio-reduction to remove the fluid that was causing Shannon so much pain. As Gabe grew so did the size of the tumor and so did the accumulation of fluid in Gabe’s skin. Our wonderful doctor, Marcy Rode kept a close eye on Gabe and his progress. Her, and all our other specialists, plan was to keep Gabe inside as long as we could to provide him with the best chance outside of Shannon but not leave him in too long and let the hydrops become worse. On June 30st, at almost 32 weeks, an ultra sound showed that fluid was now accumulating around the right side of Gabe’s lung. With this new finding we were told that it was time to be admitted to Lucile Packard for the remainder of the pregnancy. We were admitted on Wednesday, July 1. After several hours of close monitoring we learned that Shannon was 1-1/2 centimeters dilated and that the fluid around Gabe’s lung was getting worse. The doctors decided Gabe had been pushed far enough and it was time to deliver.

On July 1, 2009, Gabe was delivered via C-section to a staff of approximately thirty doctors and specialists that were going to give him the best chance at survival. Gabe’s delivery was very scary and doctors later told us that they didn’t think Gabe would even make it out of the delivery room. Gabe initially was in respiratory failure and required a tube in his throat to help him breath. Doctors also had to perform CPR, give cardiac medications and put a tube in his chest to get fluid out of his lungs. Shannon and I never even got to see Gabe and wondered if we ever would. But Gabe is a fighter, never giving up, surprising doctors and showing them all what he was made of; determination. Shortly thereafter we were told that Gabe was putting up a fight and that he was on a ventilator and wasn’t giving up.

We cannot even begin to recount every minute of every day that we have had with Gabe so far. However, I can say that every day is a blessing with Gabe and I have already learned so much from this little man. He truly is a miracle. We have watched and prayed as Gabe has endured four chest tubes, multiple breathing tube changes, countless IV’s, PICC lines, Arterial lines, catheters, two special ventilators, special breathing gas and too many medications to list. He has also had some degree of a collapsed lung or lungs for the past week. Gabe initially resembled a little Michelin man with all the fluid on his body but he has fought to lose the fluid and keep it off. Shannon and I found ourselves praying for things we never imagined we would be praying for; like pee for example when Gabe’s kidneys shut down for about a week. We have come close to losing Gabe several times now, but he always comes back fighting. He is also quite the little mystery here at Stanford. They have never seen a mass like his and are curious as to exactly what it is. When Stanford tried to type his blood they were unable to and our doctor said that he has never even heard of any known cases like this. So to this day his blood type is unknown and cannot be identified. Throughout the craziness that surrounds Gabe everyday comes calm from the wonderful nurses and doctors that care for Gabe.

He has a small army of nurses and doctors in his corner that watch over him non-stop around the clock. These nurses and doctors have formed a special bond with this little man that is hard to describe. Nurses at Lucile Packard Children’s Hospital have specifically signed up to only care for little Gabe. Doctors take special interest in Gabe’s fight, coming to his bedside often to check on his progress. We are very thankful for all of the wonderful care Gabe is receiving at Lucile Packard and couldn’t ask for more.

Up until this point we have been in a life saving mode and have made great strides forward towards getting Gabe to be stable. Yesterday we sat down with Gabe’s doctor, Doctor Bhutoni and discussed a plan for Gabe. The plan was that since Gabe had reached a point where we were no longer in a life saving mode, we should begin to try and figure out what is causing Gabe’s dangerous Hydrops. However, last night Gabe experienced a set-back. Gabe now has an infection from an unknown source. Doctors feel that it is most likely from one of the many tubes that have been placed in him to keep him alive. Gabe had been on a conventional ventilator but unfortunately Gabe had to be put back on the special ventilator called an Oscillator since he was becoming unstable again. This was heartbreaking for Shannon and I since he had been doing so well and were looking forward to trying to find the cause of his illness.

Gabe is now slowly improving and we hope that in the near future he will be well enough to begin the search for the cause of the hydrops so that it may be corrected. The doctors have said that when Gabe is healthy enough to leave the NICU, we will begin another journey to remove the two tumors that are on Gabe’s liver. It will be a long road with many hurdles, hoorahs and setbacks, but we are confident that Gabe will be causing trouble with his big sister in no time. From this point forward we will be trying to put in daily updates as to Gabe’s progress. Please continue pray for Gabe because it really does make a difference.

I would like to say thank you to our wonderful families for their love and support through these difficult times. Our families have been doing a wonderful job watching our little girl Kayla while we are here with Gabe. They have been there for us and whatever we need. Our friends have been absolutely amazing taking care of us during our stay at the Ronald McDonald House and the hospital, making sure that we have everything we need and more. You have let us know that we are definitely not alone on Gabe’s journey.

A HUGE thanks to the Palo Alto Fire Fighters for giving us what I need more than anything else, TIME. Thank you to all of the wonderful firefighters who have been working my shifts and allowing me to be here with my son and wife through a very difficult time. You have all gone beyond the call of duty to take care of me and my family and we are forever grateful. Thank you for your donations to help us with food and lodging while we are away from home. And thank you for taking care of my home, literally, while we are away. We cannot even begin to tell you all how very thankful we are for everything you have done and are still doing.

We look forward to you all getting to meet Gabe and see his progress first hand. We will continue to update his progress as much as we can and look forward to reading your comments in our blog. Thank you all so much all of your prayers, love and support of our family.