Friday, September 30, 2011
My boy is having a great day. Behaving very good today. So well, I think we may sneak out early tonight and go clubbin. But then again, it would probably be a waste without my wing man. You should see all the pretty girls that talk to us on a daily basis. Never mind the fact that they include his mother and paid nurses. Frankie Stars got a fancy new mobile for his crib tonight. I felt like MacGyver, we bought this thing new from Babies R Us tonight and it had manufactured defects. Here I am with a pocket knife, a piece of gum, and a shoelace (ok really I had a pocket knife and a screwdriver) fixing this new toy. The mobile even has a remote control to start from my lazyboy across the room. That wasn't even a lie, I really sit in this lazy boy and fire it up via wireless remote control. My mother came up and joined us for the evening. We had a blast. You can't help but laugh when she is around. The nurses were damn near blushing from hearing us talk. Frankie Foots has been keeping it real all night. He has been awake almost all night. I guess he is feeling better. Feeds are up to 6ccs an hour. They weighed him and he weighed in at over 7 pounds 2 ounces. Check out the picture above, doesn't he look like a contortionist? Really that's his hand with a sock on it, but it made for a funny picture. Nothing else is really new, no idea why he had fever yesterday. No bad results from any of the tests we have results from. His breathing seams a little deeper, but still in the 70-80 bpm range. Of course as I write about how well he has been all night, his oxygen saturation continues to be problematic. They shoot for 95% saturation or higher. He keeps dipping down to 93%. He has just finally fallen asleep so hopefully it is just because he is so sound asleep. They just gave his oxygen mix a bump and resituated him as his chin was in his chest, so lets see what happens. The other big change is that we switched from Sinatra radio to Rockabilly radio. Alex proofread this for me as always (even though I did find some errors rereading yesterdays blog) so a little time has passed since his oxygen problem. It is still coming and going so they might bump his oxygen up again before we leave.
Another up and down day. But a much better day than yesterday. When we got here around 3:30, Frankfort woke up. You can tell he wasn't in as good of a mood as of lately. He napped a little in Alex's arms, but was mostly awake until 6:30ish. He was very unhappy at that point and cried pretty well for about 15 minutes. He then fell asleep. We think he cried because he was so tired and fighting it. Alex's mother came up and visited tonight. We ate dinner, came back and he started getting grumpy. Eventually he passed gas, had a bowel movement and fell asleep. I am almost certain he has belly pains. A hypersensitive gi track like his father. He also had a fever of 101.1 degrees. He is already on antibiotics so it is hard to find a cause. They gave him Tylenol and unwrapped him for a little bit and it broke quickly. Alex and I started to watch a movie when the nurse popped in and said the surgeons wanted blood drawn and a urine sample to help diagnose the fever, thinking it may be an infection. They pull a urine sample basically the same way as giving a catheter. As it is difficult for us to be in the room for that extreme of procedure, we went and watched our movie in another room. We came back in around 11 and he has been sound asleep this whole time. When we got here earlier today and Alex was holding him, his bpm got down to the high 50's. Now they are back up in the 70-80's on average. The nurse just counted breaths per minute and he was down to 70 again. This morning they bumped his oxygen/air mixture back up to 40% mix because he got upset with all the Doctors and Nurses messing with him constantly for about an hour. But they since dropped it back down to 30% mix. There are 2 different numbers when it come to the oxygen. One is the percentage of the oxygen and room air mixture that is actually oxygen. The other number is volume of oxygen pumped per minute. Up until today they have had him on 3 Liters per minute and now they have him down to 2 liters per minute. So he is improving. Alex and I have had a better day, too. We caught up on some sleep and came in today with a better attitude. Yesterday was a hard day because I let it be. If I keep a smile on my face then it's easier to have a smile on my face. If you haven't noticed Frankie tends to wear socks on his hands because he likes to pull things out. Also we are prepping him to be a puppeteer when he grows up.
Thursday, September 29, 2011
My Dad and sister came up tonight and visited with the Frankster and ate dinner with us. Frankie got another bath tonight. This has been a hard night for me. It started when I had to wake Frankie up for a bath. I really got scared because he was so sound asleep, it took a while to get him responsive. After the bath and for the rest of the night, the leads for all his monitors just didn't want to stick. This caused abnormal readings and for the machine to continuously go off. He did wake up around 11:00 and gave me a pretty hard cry. I think he may be having problems with gas getting stuck in his intestines. I know my intestines are very sensitive to pressure because of my ibs. Since methane is lighter than air (think of cow farts depleting the ozone) it would get stuck in the highest part of the of the body. That is my theory and my theory only. Remember, I repair and sell cars for a living, I do not repair and sell children for a living. But like I said earlier, this has been a hard night for me. I never understood a fathers love for his son until now. Sure I love my wife and would do anything for her and she knows that, but multiply that by a gazillion, and you will begin to realize what this is like. I feel so helpless, I wish there was some aftermarket part made by a little China man I could bolt on to fix this. I knew this would be a struggle but holy moly. At least this is my first real hard day and Alex is feeling strong. I actually saw her taking shots of breast milk and bench pressing some of the older kids in the hospital earlier. I just hope she doesn't start wearing tapout shirts. I know my son is strong, and so are we, and this will be over soon. In no time I will be looking back at this whole experience like it was decades earlier. There is light at the end of the tunnel. I have a whole new respect for someone who has a permanent disability and the people that help them. Physical exhaustion is lame, its the emotional exhaustion that's taxing. But we have it good. When you realize a lot of omphalocele babies rock out in an incubator, others have anomalies, and then look around the NICU and see babies much worse than Frankie, you start to feel lucky. And I know I am lucky. I am the luckiest SOB alive the have Frankie and Alex.
Wednesday, September 28, 2011
P.S. We have over 175 visitors to this blog everyday. Frankie is definitely loved.
I just got home and have thought of a couple things to add as I am a little more awake now. We will start having visitors starting tomorrow (Wednesday). Just immediate family please at first. We can only have 2 people in his room at once, that includes Alex and I. I.E. Alex and Bruce Willis, Me and Scarlett Johansson, my Dad and Brooke Burke, and/or any other celebrities that drop in.
And now for this weeks question and answer segment. Today's question is from Patty Carter from lovely Affton MO.
Dear Super Awesome Parents of the Coolest Cat in Town,
Thanks for updating your blog everyday. It makes us feel like we are right there with you. You are all in my prayers everyday.
I do have a question: Did you get any of the test results that were ran after Frankie was born? You had said they retested a bunch of stuff and I just was wondering the results. (only if you want to share).
I do have a question: Did you get any of the test results that were ran after Frankie was born? You had said they retested a bunch of stuff and I just was wondering the results. (only if you want to share).
Everything they have tested came back good / normal except for his heart. But the abnormalness of his heart is actually quite normal. They have told us that a lot of babies have a hard time converting over to breathing from not in the womb. They did another heart echo yesterday and while he is not perfect at all, his septum between the left and right chambers isn't as collapsed. So in other words he is doing better. Don't quote me on the above, as I only play a doctor on TV. Now if they were to explain this stuff as drivers side and passenger sides of the heart, I would probably grasp it a little better. I know his brain looked good and his cultures have also come back good.
If you have any questions or comments you would like to ask, please send them to....
email@example.com or Scruff McGruff at Chicago, Illinois 60652 to help us Take A Bite Out Of Crime.
Monday, September 26, 2011
Today was an up and down day. To start the day, I finished restoring Frankie's 1971 AMF Pedal Tractor. So now he has a reason to heal up quickly. We came in around 2 today so we could meet with a medicaid specialist and apply for it. I hope we qualify for it because even though insurance companies can not deny coverage for pre-exsisting conditions anymore, to get coverage is ridiculously expensive. A plan at Alex's work for her and the boy is $500 plus a month or we can get an individual plan on him. An individual plan could have a rate increase up to 500% because of his condition. This means an average plan of $100-150 a month could sky rocket to $500-750 a month just for him. But we may qualify for SSI Disability on him which would offset that. For the first part of the day Frankie was doing great. As usual around 4:30-5:00, he is wide awake. Total happy and content. They have increased his feeding to 2 ccs an hour, steady feed. At a few minutes before 7:00, Alex went to go pump and Frankie was getting a little upset. No biggy, Alex went to go pump and I went to calm the little guy down. Well he went nuts. He screamed and thrashed his arms and legs around for 45 minutes. We took turns including combinations of me, the nurse, and finally Alex holding him trying to calm him down. Nothing worked. We gave him Tylenol at first. Then all of a sudden he stopped completely. He was totally exhausted. By that time, they had the 2 nurses, Alex and I, the surgeon (he kinda oversees everything on my son and runs the show) and a neonatologist were in the room. Alex was in tears. That kind of crying was not "I'm hungry" or "hold me", it was "I am hurting something serious", but unfortunately we don't know what. It may have started as a small thing and then climbed to a panic for air. Even though he was done fussing, they gave him Morphine because they knew he would be hurting just from that fit alone. It has been 2 and 1/2 hours since that happened. He has laid quietly since then, but his breaths have become shallow and increase to 90 plus per minute. We know they boy is strong. The one nurse explained that sometimes the babies need a break. They work so hard and do so well and then just wear themselves out. Hopefully this is just him worn out and we will get moving forward again. This is tough for me and Alex, but that's the name of the game. We knew this would be a struggle and we had the choice. We are happy with our choice and know its all worth it every time that little guy makes our heart melt. On the lighter side of things, while I am curious what Frankie will weigh when he gets his walking papers, I am more curious what I will weigh then. Staying up late means an extra meal and then snacks in between and then just maxin' and relaxing. I came in at 163 lb any guesses on what I'll weigh on the way out?
P.S. Don't you love Frankie's angry face?
Frankie Blue Eyes is doing much better today. Still short breaths but a lot deeper and more steady than they were. No more Tylonel and no more bed warmer. They moved Frankie to a crib today. While the boy is doing much better, they/we still have it set up for no visitors through Tuesday. My brother Tino and sister-in-law Cara brought us up dinner tonight. It was very nice to have a warm dinner. As far as Alex and I, we got to cuddle with the boy a bunch, including me and him taking a nap together. We watched the movie Cape Fear as we hung out. The most exciting part of the night was getting to bathe him for the first time. After washing his hair, we might just have a blondie. Uh oh. The other excitement came via Frankie's oxygen line. It is connected to a humidifier as not to dry out his nose and it does collect moisture in the line. When moving him, the water came loose from the walls of the tube and blew up his nose. He proceeded to choke on the water. I about had a fucking heart attack. I am patting his back and Alex was grabbing a nurse. He was fine, and recovered quickly, as he just got a little water up his nose, but man did my heart stop. He hasn't been very fussy or anything but that is because I think he has been drinking. He keeps getting the hiccups and I know I only get those when I'm druuuunk. They started feeding him again today. They give him 1 cc (milliliter) an hour of hot momma's milk via a steady feed feeding tube. Also no more fever if I haven't already mentioned that. Those new neighbors of ours aren't too friendly. I tried to borrow a cup of sugar and they refused. And boy does that baby cry. I didn't realize how quiet Frankie Two Times was until Senor Pipes moved in across the way. Frankie spent a lot of time awake tonight, letting me see those eye balls of his. When they are open wide, there is no doubting Alex is the momma. Up until then, we weren't quite sure. My aunt Karen got us a book today, but after hours of trying, I still can't get Frankie Good Glance to read it to me. I have included a couple pictures, but as always there is more in my photobucket account at...
P.S. As I sit here and write this, Frankie Farts just let me know that his pressure release system is working.
Saturday, September 24, 2011
Frankie boy is a week old now. How life has changed since he was born. Satellites started falling from the sky, they stopped producing compact discs and stopped charging for long distance phone calls. We arrived around 2:30 today. He was quite upset with our early entrance. I have never seen him so upset in his whole life. But he came around. Its almost 10 pm and he has been pleasantly quiet all afternoon and evening. His heart rate is around 155. They want 140 but that is also a far cry from his 180-210 yesterday. His breaths have deepened and the breaths per minute have dropped to around 75. They want 40 but last night he was 100 plus. The oxygen they give him is down to 40 percent compared to 70 percent yesterday. Still not an absolute cause for his problems and discomforts, but they stopped the silvadene (burn cream) and have been giving him Tylenol all day. His fever is gone also. We/They have stopped visitors, the lights are out, and the nurses try not to bug him. Alex and I sat here for the last two plus hours watching Bridesmaids on her laptop with headphones on. It really sucked only being able to hear the dialog on the left side of the screen. Just kidding, we had two pairs of headphones. The baby across the hall went home today. She was very premature, but that is all I know. I am curious to meet our new neighbors tonight. No real plan of attack for the boy at the minute, just kinda get him back to normal before moving forward again. We appreciate all the support we have received. It means a lot to us to have such great friends and family.
Its amazing the way a 6.5 pound creature can change your life. I am not one to be idle, ever, but there is nothing more that I want to do now than sit next to this little guy all day, everyday. My breathing stops with his, my eyes swell with every fuss he makes, my mouth smiles every time his little eyes open and look in mine. He is the only thing I have ever came across that I can not fix, and I would give up everything in the world to be able to. We got a call around noonish today that Frankie wasn't doing good. His heart beat and breathing were up and he wasn't feeding good. By the time we got up here at 3, it had gotten worse. They look for a heart beat around 140 BPM and he was closer to 180-190 and at one time it rose to 210. His breaths per minute should be around 40 and they were 90 plus, at times reaching 110-120. His face was swollen and he was fussy. They ran all kinds of tests on him, but most came back negative. They put him on a strong supply of Oxygen. Alex and I felt that it was an allergic reaction to the silvadene (burn cream) they started applying to the omphalocele last night. Per our requests, the surgeons came up and redressed the omphalocele without the cream. Later the heart echo came back and they think he has Pulmonary Hypertension. They described it to us as a valve in the heart that is closed while he is the womb and blocks the blood from the lungs as it doesn't need to absorb oxygen. When he is born, that valve opens. They say his has shut some. His breaths are very short and shallow. Like that you would get with a panic attack. To top that, he got a fever of over 101. By the time I am writing this, 12:45 am (and we are people who are normally in bed at 9:30 at night), his fever has broke, the swelling has gone down some, his heart beats have dropped to 165 BPM, and his breaths have deepened some but nothing too much. I wasn't expecting any of this. He was supposed to be my little healthy guy with a cosmetic defect. They stopped feeding him until they get this under control. He gets all the nutrients he needs via IV right now. He is starting to wake up now and is getting fussy. Sorry this one isn't very uplifting. I just feel like everything is out of my control. I have never been a very spiritual man, but please pray for my Frankie as he may be dating your daughter one day. P.S. To get a guesstimate timeline of recovery for the boy, check out the following link....
Thursday, September 22, 2011
Tuesday, September 20, 2011
Days 3 and 4 are boring, which is awesome. The omphalocele membrane is becoming tougher and more opaque, before you could see through it, not so much anymore. Few more days of this and they will be able to start applying the silvadene, which is the burn cream. He is so well behaved. Only fusses when he is fussed with. Alex started making milk, so those bad boys aren't just for decoration anymore. She tried to feed him and he refused, so he got a feeding tube so they could give him the milk. But as faith would have it, magic hands DiFranco not only can quiet the boy but can get him to eat too. I fed him tonight around 9 pm, which was only the 3rd time I have held him, and got him to take down 6cc's of milk. Yeah baby! I have told everyone about the blog, including student nurses who were on a tour of the NICU today. My goal is to have Frankie become an internet sensation so I can retire. Alex will be discharged tomorrow around noonish. We have until then to fill out the Birth Certificate info or there is a bunch of paper work to do it later. She wants Frankie as his proper name. I am shooting for Francenzo. Other options are Franco (Italian), Franklin (English), or Francesco (French). I plan on winning, but just remember Frankie, when you look back at this blog in 20 years, and if you don't like your name, it's your Mother's fault. But also remember this boy, I love you more than anything else in the world and will never let you down, like I said, it was your mother's fault.
Sunday, September 18, 2011
Sorry pictures and videos are in absolutely no order and I don't feel like straightening it out right now so you may see Alex's don't take my picture I'm in labor number followed by her holding our baby followed by her having our baby. He doesn't cry much. I took the above video because it was the first time I heard him really cry. Enjoy!
To begin with Alex, she spent most of the day roaming the halls and visiting Frankie. She is doing well, moving around pretty good and in mild pain. Her blood pressure is still up though. Update 8:23 pm, her blood pressure is finally 137/89, so within spec. Hopefully it stays there. She has been pumping all day trying to get something for the little guy to eat. Hopefully we will have something soon for him. He is getting nutrients and fluids through an iv right now so he isn't starving.
Frankie is doing awesome. Beside the fact he has a mound on his belly that include organs and possibly lost jewels, he is as healthy as a horse. Everything works. We finally got to hold him this afternoon. It was amazing. They did a heart echo today and found nothing from what we gathered but we have to talk to the person who did the test to get all the info.
The Monsignor from my mother's church came up and did an "emergency" baptism on the boy. My brother in law Cody and my sister Jaclyn are the god parents. The Monsignor had stopped mass 3 times in each of the 4 masses he led (Saturday and Sunday) to have everyone pray for Frankie. This chokes me up every time I think about it.
I want to thank all our friends and family for being here and supporting us so much. I don't know how I can ever repay them. I feel bad for not being able to give them the attention I think they deserve when they are here, but I know they understand.
I also want to thank the staff. They have been doing their job well. Alex's OB, Jennifer Smith, we would really like to thank. Alex says that not only does she do her job as Doctor superbly, she's also a wonderful person on a friend level. She not only does an A+ job on the medical front, but also does an A+ job on the psychological front, making her feel comfortable and safe. Unfortunately we missed her as she dropped in today, but hope this message will reach her.
As far as the omphalocele, I know everyone is too polite to ask to see it and would never ask. We (Frankie, Alex, and I) are not ashamed of it in anyway. We love him and everything about him, as I am sure everyone else is. I have included pictures and videos from the past few days, including the O. Isn't he a handsome little stud?