Day 21: So What If Frankie's Gonna Be A Super Model

Man, was it the fact that Frankie Fuel wasn't having a good day yesterday or was my delivery that bad? Not a single comment on Facebook. That kind of thing could lead a man to do drugs. But then again, this blog wouldn't get done, would be covered in hostess donuts powdered sugar, would probably be a week late and..... what was I talking about? Frankie Bones had a much better day. Our wonderful nurse Carlinda is to thank for that. She refused to give him morphine today. She said if he has a broken bone or an incision or something that we knew what the pain was from, then she would be ok with it. But treating something that isn't diagnosed is foolish. She held him for an hour and a half this morning and realized he was spitting up. They stopped feeding him immediately and also pulled back what they could out of his stomach. They were able to pull back 40cc at first and then another 10 plus cc hours later. He is only on 17cc an hour. That means he had 2 1/2 hours of food stuck in his belly. They said he seemed to feel better almost immediately. Well duh. He stopped fussing and crying all together. Think about it, being constantly overfilled and having reflux. That would make anyone uncomfortable. Mister I'm too sexy for my mama's milk. On the catwalk, on the catwalk.... The surgeons, who run the show, said to hold off food for all of today and they would reassess in the morning. Worse case scenario the Frankie Full Belly will be back on TPN nutrition through the IV. Let's get his breathing under control first. I do not know his actual weights for this mathematical equations we will say he weighed 6 lbs at birth and 7 pounds now. He actually weighed less at birth and more now. But his gaining 1 lb is the same as me going from 165lb to 192lb. Quite a feat. Frankie Fudge's oxygen is at 5 liters an hour at 35% but he has been happy and wide eyed all day. He has also gotten color back in his skin today. He is breathing very rapidly but his oxygen saturation is good. Frankie Fugitive had both of this grandmas visit today. Sue came by early in the evening and my Mother came later. Tonight was the first time my Mother held him. We had told everyone they were not aloud to hold him at first. This was purely for Alex's sake. I wanted her to be the first to hold him since she missed out on a lot of first things because he was at the adjoining hospital. Well, no one realized this was the reason. So anyone who comes up, in good health, can hold the boy. Just make sure to ask the nurses for help with his bungee cords. Anyone wanna make a million with me, note this is my idea, but how about retractable everything that is connected to my bungee boy. Its 12:15 and he is wide awake with his thumb stuck in his binkie. See below, we have proof. What a breath of fresh air.  

Day 20: Frankie Fabulous Fightin' Hard

The poor boy is having a tough time with breathing. He isn't really on any drugs tonight, but he is worn out from trying to breath. He had morphine around 2 but no gas drops. The doctors don't think those work, but then all the nurses with children swear by them. We prefer him not to be on anything, but we also do want him to suffer. Frankie No Freckles does what everyone refers to as grunting. Not like Tim Taylor, like he is fighting for air. They have him up to 5 liters at 50% mix. Room air is 21% oxygen. He can get up to 6 liters before they to use a ventilator. His oxygen saturation is good, his heart rate is a little high, but nothing to be concerned with, and his breaths per minute are in the 70s. The breaths per minute are high, but normal for him and he has seemed comfortable at this number. The reason they are upping his oxygen is based on the blood work they do. His carbon dioxide levels in his blood are too high. They seem to plateau. He is not processing the oxygen well enough. His kidneys are supposedly offsetting this. He needs to grow in size to overcome this but he is burning all his calories breathing. Frankie Fiddle is back on antibiotics for 48 hours while they grow his cultures to see if he has an infection. Earlier he sounded like he was gargling so to help clear his throat, we propped him up in his boppy. This really seemed to work, but as you can see, it's really a lot of work to move that belly while he breaths. Frankie For Fun just started making some noise, so I took a minute from typing this to cuddled up with him. He really seemed to like it. Now Alex is taking a turn. They upped his feed to 17 cc an hour. They base it all off of calories per weight. He should be at around 21-22cc an hour. So he is not too terribly far off.  This whole nicu thing is a roller coaster. He doesn't really seem that uncomfortable, so hopefully they don't dope him up after we leave. As for Alex and I, we went had grabbed a bite to eat at a cafe/bakery that my mother gave us a groupon for. I don't remember the name of the place, but it was obvious why they had a groupon that was buy $35 and get $25 off. Not so good. Other than that, we watched some TV on the laptop, including watching the last 2 episodes of Two and a Half Men. Terrible show now. The only funny thing is the kid. They should have made him inherit Charlie's money and wrote the show around that. 

Day 19: Frankie Fiend in La La Land

Frankie Freshness is feeling much better today, but who wouldn't went you are on morphine. He continued to be "uncomfortable" throughout the night and morning, so they replaced his Tylenol with a low dosage of morphine. He had his first hit this morning around 10. The surgeons came by this evening and re-wrapped the omphalocele. I was able to get a few shots but nothing Time magazine cover worthy. There is a small abrasion on the left side, but they said that is nothing to worry about and do not know the cause of it. Jaclyn and my Dad came up to visit us. Poor guys had to wait for hours as because the surgeons were to be right up, 2 hours later we were able to have dinner with them. We both had taco salad, which seemed like a great idea at the time. They also started to allow Frankie Trapped Toots Mylicon. Mylicon is a generic of Simethicone which  is used to treat the symptoms of gas such as uncomfortable or painful pressure, fullness, and bloating. I wonder if they notice if I stole a little from the guy. He got his first dose of the stuff about 45 minutes ago. He had become fussy and instead of jumping to top rail stuff, we decided to give this a try. So far so good. Back tracking, after dinner we had the young Marty Feldman wide awake and playing happily. He is aloud Morphine every 3-4 hours but he only had it at 10 am and again at 5:45 pm. It was around 9 pm we had him up and playing, so by then it should have been about worn off. After consistently asking about the family jewels, I finally got somewhere tonight. The doctor kept telling me that it is very common for the fellas to take up to a year to descend and they wouldn't go looking for them until then. I wasn't satisfied with that. I told the lady, I don't care if they are located behind his left ear, I just wanna know they are there. Well thanks to his loving father, Frankie Fun House has officially been groped by his first foreign woman. She was able to locate the left one in his groin area between the ant eater and the leg but we still have a search party out trying to collect the reward on ol' righty.  Speaking of the Frank and Beans, they say a couples sex life dwindles off after having a baby. I always thought that it was because of being tired and not having privacy, but I discovered the truth in the kitchen today. I walked in and looked at Alex and realized how much she looked like my son. Weird.

Remember there is always a ton of pictures at....
http://s272.photobucket.com/albums/jj179/JoeyDi84/Frankie/

Day 18: Frankie Fragile Fingers

Man nothing calms this boy but a constant pat on the backside. I read about colic, but it says just for a couple hours each day at around the same time frame. This is way too much to be colic it sounds. I really think he is hurting. He falls asleep for anywhere from 30 seconds to 15 minutes at a time but then wakes up and cries. Some are pretty substantial cries too. He had his air turned up this morning, steady Tylenol during the day, and even had a fever this afternoon. Not much of a fever, but enough that a wet rag, naked baby, and turned down room temp got it to break quick. We brought in his personal swing from home since it has a vibration setting, it that only worked for minute or two. I think the straps were uncomfortable. We left the top ones off, but I think he ended up laying on those. We had it set up on top of the crib with the mobile spinning too. It was like an amusement park.   Beside that, today has been quite boring. Just taking turns patting him on the ass. Finally we walked away and hoped he would just cry it out, but that only worked for a short while. We hate to think that he is hurting, but we have no other answers. I know today's is short and boring. I promise to make it up tomorrow.

Day 17: Frankie Fuss claims the day

Frankie has had a long day. He was fussy for the surgeons this morning. They said the redness on the omphalocele was completely normal but held off on the silvadene today. I did speak to Jose the surgeon this evening and he told me they were going to restart the silvadene tomorrow. Around noon, the speech therapist came by to play with Frankie and try giving him tastings of breast milk by dipping his binkie in it. But he was inconsolable. Instead of breast milk, he got Tylenol. We try not to give that to him, we do not want him to became an addict. I can see it now, dealing baby aspirin under the slide. He never really had a fully awake and fully asleep pattern today like normal. He was in and out of sleep, waking to be patted on the butt back to sleep. We did buy a NOS (New Old Stock) bed thumper for him. Instead of having to pat his butt, this little shaker will sit in or under the mattress and console him. It has a separate motion sensor, so if he does wake up, it will turn back on. It was called the First Years Gentle Vibrations 3 in 1 Crib Soother. By the time I am writing this, his feeds are up to 11cc's an hour. I believe his goal number is 18cc and hour based on his current weight, which is a little over 7 pounds 3 ounces. Besides that, Frankie Fuss was cranky all night until now, when he just had a bowel movement or two or three. When I told the surgeon earlier that Famous Frankie gets fussy, passes gas, has a bowel movement and feels better, Jose's response was just like every man. Alex's mom came up this evening and hung out for a little bit. Jaclyn took a minute off from having people run into her car to come visit. Even Tino came up for a little bit. My father is battling a cold, so he took the night off. Probably got it from making out with my mom again. Alex went to the OB today for a check up and they verified that she did indeed have a baby. That everything looks good, but to continue to take it easy. Since she went to the doc, we drove separately. I finally got to dig the bike out for a ride up here. Now let me tell you, I have had some odd things on the back of my bike like beer and fat women (Notice the Cause and Effect there), but never breast milk. I felt like the Jesse James of Prairie Farms. Coming up here has become routine. We have become tougher skinned about the boy as we know it's for his own good. I almost forgot, they did a heart echo today and everything looked the same. Not better, not worse. They have no other plan of treatment as of right now except for oxygen flow. Day by day, this will be a thing of the past before we know it.

Day 16: Frankie Makes Trouble and Women's Knees Tremble

When we called in this morning to see how Frankie Fish was doing, we got some bad news about his morning. He had woken up around 4 am crying his eyes out. They didn't get completely settled until around 10 am we were told. They decided he was starved for oxygen and ended up cranking it all the way up to 4 liters per minute at 40%. They say he immediately responded to that and was better in no time. Tomorrow they will do another heart echo to see about his pulmonary hypertension. They expect him to grow out of this, but if he doesn't, they can treat it with nitrates or boner medicine as that is what it was originally invented for. Because of his breathing, they have stopped increasing his feed twice a day to once a day. He's now at 9cc's an hour. After this point, he could have trouble with spitting up and they didn't want this to hinder his breathing any more. He has been good for us all afternoon. He got upset for minute earlier, but that passed quickly into his diaper. I feel so bad for the guy being hooked up to all these machines. At one point he had 10 things connected to him. He is now down to 7. Oxygen via the nose, feeding tube via the nose, heart rate on one side of the chest, respiratory rate on the other side of the chest and on his side, oxygen saturation monitor on the foot and a picc line (peripherally inserted central catheter) in his arm instead of an IV.  I personally get very upset and frustrated trying to move him around or get him up and play with him with all that foolishness hooked up to him. Alex's friend tall Kelly, her Marine and newly enlisted member of their family drove all the way up from Houston to see Frankie Lost Balls. While they were here, they also dropped in to see Kelly's sister Sarah's wedding. Boy was Sarah lucky that Kelly came up to see Frankie this weekend. Cody and the lovely Anna came up and visited us too. We walked over to the Majestic to have dinner. It was nice to get out of here and act normal for a minute. I knew the central west end was close, but it was less than a 5 minute walk to the Majestic. Which P.S., they stop serving pancakes at 3:30 in the afternoon. Who does this? Geezo. I had to settle for the Nacho's Grande Omelette (spell check says I spelled that wrong, but that's how they spelled it on their menu) and it was gnarly; gnarly good. They got some pictures of the omphalocele this morning for us. It is shrinking for sure. Although I don't think it looks smaller in pictures, it takes a lot less gauze to cover it. There is a red spot on it that I asked about, and hopefully they remember to ask the surgeons about it tomorrow. It is on the left side of it. In yesterdays blog, I said they gave him a water pill, well, I was misinformed about this. He did not receive a water pill, he just had a big whiz on his own. Included are quite a few pictures today, including some from his bath. If you look at it his mid section from the back, you can see how small of a cavity it is at the moment. All in all things are well. And momma is looking hot.

Day 15: Frankie's Been Rockin' The Scene For 2 Weeks Now

Sorry Sinatra, it appears rockabilly is what soothes this Fat Cat. He went down at 8:00, its 12:30, he is sound asleep and hasn't had an alarm trip in 4 hours. That means a good heart beat, good bpms, and good oxygen saturation.While his BPM are still in the 70-80s, they are a lot deeper and he seems very comfortable.  The morning started off a little rough for Frankfort, but he recovered quickly. I left you last night with his oxygen levels dipping. Well this morning they increased his Oxygen back up to 3 liters a minute at 40%. They thought he looked a little puffy and decided his was retaining water for all the IV's so he was given a "water pill." He peed it out and lost 5 grams of weight. They started Silvadene (burn cream) back up this morning with no adverse effects. They will be increasing his feeds by a cc every 12 hours. He will be up to 8cc an hour. We have noticed he has become a lot more alert and is starting to show a personality. I held him for a while when I got here and he really liked to be held upright. We also found out that light patting on his back really quiets him down if he does get noisy. Franklin also got a swing today (So I guess that makes him one swingin' fat cat), but we haven't put him in it yet while we were here but he did enjoy it this morning. We should have new pictures of the Omphalocele tomorrow. The surgeons dropped in and we asked them to take pictures of it tomorrow morning when they re-wrap it. To remember, Jose the surgeon literally taped a note to his dressings. Overall, it has been a quiet night, we watched a movie and my mother dropped in for a minute as she was just over in the Central West End.