Monday, April 30, 2012

Family Vacay & March for Babies!

Last week, our little DiFranco family took their first family vacation! We invested some money into a camper that pulls behind Joe's big diesel truck. I'm not typically one for camping but when I have my own bed, bathroom, shower, kitchen, AC/heat, I'm ALL over it! I do enjoy being out there, just not in a tent with the bugs and bears! So, we ended up driving 3 hours northwest of here to Arrow Rock, Missouri. Arrow Rock is a very, very small town (population 56) with a little main street. As our luck would have it, not a dang thing was open because the "season" didn't start until THIS WEEK! Oh well! We still had a good time hiking, taking walks, just hanging out together, peacefully! This summer, we are hoping to take a couple weeks and head to the east coast! If anyone has any suggestions, we'd love to here them!

March of Dimes, March for Babies! Wow! This event just about renders me speechless! Our friends and family are insanely amazing! We had a huge team at the actual event, not to mention all the t-shirts we sold! If we would have had everyone there that bought a shirt, we would have had 105 people! So cool! Frankie's team raised a whopping $1,300 for the March of Dimes! We had so much fun and can not wait until next year!

So, tomorrow is Frankie's hernia surgery. We have to be there at 5:45 am (ahhhh!) and the surgery is at 7:45 am. Joe and I have faith that all will go well, it's just still nerve wracking thinking about what he has to go through. They will be giving him a spinal instead of knocking him out completely and intubating him. Tomorrow we will be sure to keep everyone updated on his status and such. We will be coming back home on Wednesday.

Thanks so, so much for all that donated, bought t-shirts and showed your support for the March! Also, a big thanks for the thoughts and prayers for Frankie's surgery tomorrow. We love you all!

Thursday, April 19, 2012

The appointment marathon!

Let me start by saying all went well today! Let me break each appointment down...

Heart echo: This was the quickest echo we have ever done! Frankie is such a good boy and this gal had done and echo on him before and knew the position to get the best shot of his ticker. We don't know the results of the echo yet as we didn't meet with the cardiologist. He will look over it and call us with any information. I am actually going to call in the morning to let them know I am anticipating a call no matter what the results may be. I'm sure they will be great!

Neonatologist: The plan is for Frankie to get his hernia surgery and heal. Once he fully recovered we go back and visit Dr. Phil (seriously, that's his name and we love him so much! Well, his first name is Phil at least!) in June and we start developing a plan to wean his oxygen! Yay! Fingers crossed it all goes well. This is something we have to work along side the cardiologist with because of his PPHN and ASD. Frankie is gaining weight, not as much as they'd like, but it's some. They'd prefer he'd gain an ounce a day but that's not happening. At least not at the moment. I'm trying my best to figure out the best feeding plan with him, along with the nutritionist.

Xray: We went and had an xray of Frankie's abdomen just to make sure that all looks well since he's spitting up more. He's still pooping but they just wanted to make sure all was well in his O and thankfully, it is!

Surgery: Frankie's O is looking great and is drastically shrinking. Little did we know, until today, that it has shrunk so much. The surgeons are much more used to this kind of thing and know how hard they can push on it and manipulate it. He has a lot of "give" and/or extra skin on his O now because a lot has gone into his abdomen. Very cool! Now that we can this we can wrap him tighter knowing that he'll be okay! Also while there, we discussed his double hernia surgery. This will take place on May 1st. We aren't sure of the time yet. We won't know that until the day before. Once we do we will let everyone know. Typically, this is an out patient procedure but because Frankie writes his own book on everything medical, we are staying over night, just in case.

Upper GI: Dr. Keller (surgeon) had us go back down to radiology just to check the placement of Frankie's NG tube. If it was too far down into stomach and into his small intestines it could cause a lot of issues. If it was in his stomach, things were fine. We came to find out that it's in his stomach and all is fine! If it had been in his duodenum (beginning section of small intestine) we just would have had to pull the NG back a little bit until it was in the stomach. Also, the other night Joe and I checked the placement and such of his NG and it actually wasn't in far enough. This is a big reason why he was spitting up more. He still spit up today but not as much as usual, now that it's in the correct spot.

Anesthesiology: We went and paid a visit to the drug doctors to see what we could do for Frankie during his hernia repair surgery. Typically, they intubate a child during this surgery and then extubate them shortly after during recovery.  Since Frankie has PPHN, if possible, we would rather not do this to him. They did it during his belly surgery in December but that is an entirely different scenario. Thankfully, it is possible for them to just give him a spinal during the surgery and he will just be numb like I was for his delivery. Obviously if they run into complications (not likely) and such, they can always knock him out completely and intubate him.

So, everything went well and Frankie will have his hernia surgery on May 1st. I am nervous as ever about it just because I hate for him to have to go through anything more but it will be nice to cross one thing off the Frankie "to do" list.

We appreciate everyone's support, love and prayers through all of this. It honestly is very helpful and we are thankful for each and every one of you! If I missed anything or anyone has any questions, please don't hesitate to ask!

Also, March for Babies is April 28th! We hope to see everyone there! And, a HUGE thank you to all who donated and bought a Team Frankie shirt! You all rock!!!!!!!!!!!!!

LOVE TO YOU ALL!!!!!!!!! Now for some pics!
Cute little baby hand doing art!
Getting his echo done.

Waiting to see the drug doctors. 

Passed out during the last appointment. He wore himself out flirting with all the pretty nurses!

Popeye face! No, really, he's feeling his two bottom teeth because they're coming in!

Chilling at home after a much needed nap after today's marathon!

Monday, April 9, 2012

Just shy of 7 months!

It's so hard to believe but Frankie is almost 7 months old! He's really growing! He has such a personality now and I LOVE every second of it! Frankie can now sit up on his own and is working on standing up as well as clapping his hands and babbling! He talks a ton now! He is also doing great! He now weighs in at 13 lbs 10 oz! He's gaining very well! Let me break things down for an overview of it all...

Feeding: Frankie is still on his NG tube, unfortunately. Remember he used to have his food go in over 3 hours and then he was off for 1 hour? Well, now he's on for 1 hour and is off for 3 hours! Yay! I've been working hard on this. He is now getting a chance to start feeling hungry! Twice a day, before his feeds go back on, I am offering him his delicious home made baby food! I taste test it all first to make sure that it's good. I don't want to feed him it if it's nasty! If I won't eat it, I'm not offering it to him! We will keep working towards reducing the time the feeds go in in hopes that he will be able to tolerate an entire feeding at once and we can pull the tube for good! A nutritionist came by the house on Friday and we talked about the best way to do this. I look forward to start taking those steps on Monday! Why wait until Monday? Frankie will be finished with his steroids. Why is he on steroids? That leads me to the next topic...

PPHN: On March 13th Joe and I noticed that Frankie was acting a little strange and eventually his coloring didn't look too well. His face was grey and around his lips was purpleish blue. We kept increasing his oxygen and his coloring wouldn't return to normal. What else sucks is that his pulse ox machine wasn't working either and hadn't been for a few days so we didn't know how low his saturation really was! We packed him up and took him to the ER. When we leave the house we always put him on a small, portable tank of air. When we put him on this his coloring returned to normal and he got more life back into him. When we got the the hospital they did x-rays, ran a few tests and did an echo on his heart. The echo worsened and the cardiologist was concerned. Frankie was admitted to the cardiology floor for the night for observation and was put on a steroid burst. What ended up happening was his oxygen machine at home wasn't working as well as his pulse ox machine. We found this out when we brought him back home from the hospital and hooked him back up to it and he started to look funny again. Needless to say, we have switched home health companies because that was the last f*#%ing straw for me! They have been a nightmare to deal with and this was it! I could've choked someone! Anyhow... The steriods should help improve his PPHN and we do believe that it has. His oxygen saturation levels have been amazing! So good that it doesn't seem like he even needs oxygen! He is hardly on any! He is only on 0.2 liters and the lowest it goes is 0.1 liters. Hopefully he keeps in this direction and we can get him off of oxygen after his hernia surgery. That's the next topic...

Surgery: Our next appointment is Thursday next week, the 19th. During this appointment they will look at his O (no surgery on that for a long time though) and we will discuss the options for his hernia surgery and we will also schedule it. I will definitely post an update about this on Thursday next week because we will also be seeing his neonatologist and cardiology (follow up after steroids have ended). His O is looking great and it is decreasing in size little by little. After hernia surgery, we will start compression wrapping it and hope that his breathing lets us do it! It will just be a slow process, but that's okay!

ASD: The cardiologist will look at the echo we will be getting on the 19th and let us know what he thinks. But, Frankie will definitely be getting heart surgery by the time he is one.... ;(

Frankie qualified for the First Steps Program (YAY!!!!) and is being seen by THE BEST occupational therapist (weekly), physical therapist (monthly) and nutritionist (monthly)! We are so lucky to have qualified. I am so, so thankful for these gals, they are truly amazing! A few therapist still stop by through his insurance when they don't cancel or reschedule literally ten minutes before his appointment!

No medicine changes for the Tank. 

I believe that is all for now! The next update will be on the 19th! Feel free to ask any questions if you think I have forgotten something! Love to you all and THANK YOU for your constant love, support and prayers for our Tank!
Look at the beautiful baby face with no tubes! We can't wait until he's like this 24/7!

Look at that muscle definition! This kiddo never stops moving! He would run if he could!
Playing with his OT, Ellen! 
Frankie loves Ellen!
Snuggling with his dada at the restaurant.
Big boy playing with his toys!
Down time... finally! 
 Chillin' in the sink in the RV!
Zonked out while holding his bink!
My little hunk!
A complete mess! A cookie and a sippy with water make one messy baby! And I love it! Messy baby means you had a good time!
Little ham!