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!

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!

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!

 Standing!!!!

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!

I HEART Frankie!

This post is a cardiology update for the Tank. It may be long and it may be confusing but I'm going to do my best to explain everything to the best of my ability for all to understand.

As we all know, Frankie has an ASD (atrial septal defect). We got the official diagnosis for this literally the day before we left the NICU the first time. Why? They were waiting to see if it was possibly a PFO. An ASD can be in several different spots, a PFO is in one cartain spot. His ASD happens to be where the PFO would be. In utero, we all have a PFO. Once we are born, it closes. Sometimes it takes longer in some babies than in others for it to close. We were all hoping that it was a PFO that was slow to close but unfortunately, it's an ASD.

What do you do with an ASD?
Typically, they close the ASD around age 3-5 depending on how large it is and if it is causing the child any problems. Since Frankie's is so large, they want to close it around the age of 1.

Problems it's causing?
In a healthy heart, blood that returns from the body to the right-sided filling chamber (right atrium) is low in oxygen. This blood passes to the right-sided pumping chamber (right ventricle), and then to the lungs to receive oxygen. The blood that has been enriched with oxygen returns to the left atrium, and then to the left ventricle. It's then pumped out to the body through the aorta, a large blood vessel that carries the blood to the smaller blood vessels in the body. The right and left filling chambers are separated by a thin shared wall, called the atrial septum.

In a person with an atrial septal defect, there's an opening in the wall (septum) between the atria. As a result, some oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs. The increased blood flow to the lungs creates a swishing sound, which is known as a heart murmur. This is making the right side of his heart dilated because there is too much blood in there. His heart is working twice as hard and he is burning way more calories because of it. This also causes him to breath quicker and have a higher heart rate.

How do we fix it?
There are several different options.
1. Cardiac catheterization: A thin, flexible tube (a catheter) is inserted into a blood vessel in the leg that leads to the heart. A cardiologist guides the tube into the heart to make measurements of blood flow, pressure, and oxygen levels in the heart chambers. A special implant is positioned into the hole and is designed to flatten against the septum on both sides to close and permanently seal the ASD.
Why this won't work for Frankie: He is too small. Unless he somehow has this massive growth spert, this won't work. His vessels are too small and it would just tear them up and cause more problems. The doctor said he would need to be at least 25 pounds. Right now, he is 12lbs 9oz. That's a lot of weight to gain. Anything is possible but it isn't likely.

2. Going through the liver: Similar to the cardiac cath, they can go through the liver and to the heart to close it up.
Why this won't work for Frankie: One word... Omphalocele.

3. Open heart surgery: ASD surgery involves making a cut in the chest so a surgeon can stitch the hole in the atrial septum closed or sew a patch of manmade surgical material (such as Gore-Tex) over the defect. Eventually, the tissue of the heart heals over the patch or stitches, making the area smooth and nearly normal in appearance.
There is a "patch" that they would like to try on Frankie. There is a 50% chance that they can do it this way. The reason they want to try and use the patch is so that they don't have to put him on a heart and lunch machine. With the patch, the heart can be beating while they patch it. His ASD is very large so they will try this first and if it doesn't work, they will surgically close it since they already are in there and have the chest opened up. Unfortunately, this means he will have to be on a heart and lung machine while they do the surgery because they have to stop the heart from beating and drain it. Then they will sew it shut and get things going again.

This is the most likely case for us as of now. It is absolutely terrifying to think of and makes me sick to my stomach. That's why I haven't written this post yet. He needs this and he will be okay. This is a routine procedure for these doctors, they do them ALL the time and statically speaking, the likely hood of anything going wrong is the same as us going in for his hernia surgery. Does that make me feel better? Hell no. The thought of his little heart not beating scares the living shit out of me. I hate every second of it. I'm praying to the good, good Lord that we don't have to do it this way but it's not looking good. His ASD is just too large and it won't close on it's own.

When will the surgery be?
Around 1 year of age. We go back to the cardiologist in June to take a look at things again. We should have a better idea then and I'm sure we will be seen a few more times before surgery to plan everything out. We need to do this surgery before we can to any O surgeries so that he has a healthy heart.

How will he be once recovered?
Having an ASD can make you very tired (not in his case), poor growth, not want to eat much, shortness of breath and lung problems. Once he all all healed he shouldn't breath as fast, his heart rate should be more normal and he should eat better (hoping, hoping, hoping for this). Also, it will help out his PPHN. Since it's not the cause of his PPHN it will not correct it but it will certainly help.

How is the PPHN?
His lung pressures are still high but it is getting better. We still have the option to try steroids again. As for now, we are just leaving things the way they are since he is doing great, clinically. Instead of get Sildenafil(Viagra) 4 times a day, he is now getting it 3 times a day. Lessening meds is always a plus! When do children typically out grow PPHN? Between 5-6 years old. Why so long? This is when their lung tissue finally stops growing.

I do think that is it for now. If anyone has any questions, feel free to ask. I may have missed something as this is a long, very informative post with too much info! Hopefully I remembered everything. Overall, he's doing well. He's such a happy, sweet, good, good baby! Love to you all!!!

Who wants a shot?!

Remember when shots used to be fun? Shots of Tequila, Jager Bombs..... My how things change when you have a baby! Now shots include D-Tap, Rotovirus, etc. Not exactly the kind of shot that is so much fun! I think our fun shot taking days are over, for now.

Today, Frankie went to the pediatrician. He weighed in at 12lbs 5 oz, but that was with clothes on and a wet diaper, so we are thinking he's around 12 lbs or a little over. I will weigh him on my scale tomorrow. Didn't find it necessary to weigh him twice today. Since December Frankie has grown 4 inches in length. He's finally on the growth chart for length! And, since last month he has gained almost 2 lbs! The doctor is VERY pleased! This means his food is doing the trick and he's handling it well which is even better! Frankie is currenlty getting 117ml over 4 hours. That's 3 ml shy of 4 oz. And, it's still fortified. For the longest time we had his food go in over 3 hours and then he was off for an hour. Now we are getting the food in in 2.5 hours and he's off for an hour and a half! We're making progress, slowly, but it's progress! Joe and I believe this will be a slow process because he's spitting up just a tiny bit now with the change. It will just take time. We can handle that!

After leaving the pediatrician we had to take Frankie to get his 4 month shots (1 month late). We can't get them at the doctors office because of the state health care. We had to go to the South County Health Center to get them. Yuck! It's better than the city locations but it's still gross! Frankie recovered quickly from the shots but he cried. And it hurt my feelings! I felt terrible for him. Poor baby!

Over all, Frankie is doing SUPER! He's growing very well! We qualified for First Steps so now Frankie will have all the therapy he needs until he is 3 or catches up and gets his O taken care of before then! This is very exciting! I've been working hard with him everyday! Physical therapy exercises, speech stimulation exercises! Tons of stuff! And he's doing well!

Hopefully after Frankie's hernia surgery in April (not scheduled just yet) we can get him off the oxygen. They are leaving him on it until after the surgery in case he needs it. Also, when we go back to the neonatologist in April we are going to talk about his meds and see if we can get him off of some of them. Tuesday next week, we go to the cardiologist to check on his PPHN. Praying for nothing but good news! Of course, I will let you all know how that goes!

If you'd like a Frank the Tank shirt let me know and I will get one ordered for you. They're super cute! And they are $20. A majority of the $20 goes towards the March of Dimes and the rest covers the shirt.

That's all for now! Love to you all! Oh and we finally have some new pics of his O!

The amazing Frankie!

On Thursday last week we went to see the neonatologist. Overall, Frankie is doing swell! He is weighing in around 11lbs 8oz. He's steadily gaining! Here's the rundown...

Oxygen: We will be on this until after his hernia surgery in April. They are in no rush to get rid of this because it's simple and helpful. Once he has his hernia surgery and we are free and clear of anything breathing concerns, then hopefully we can say good bye to it!

NG tube: We hate it. So, we tried the sink or swim method and Frankie floated..... We ended up putting it back in because he wasn't taking enough by the bottle to not get dehydrated but he can take a bottle! So, we are just going to keep offering him a bottle each day and start to shorten the amount of time that his feeds are on so that he eventually gets all of his food over an hour and then his belly is used to having all of that volume at once and then we can give him a bottle and hopefully say adios to the NG!

Baby food: The pediatrician told me to wait until his 5 month appointment (which is Feb, 21st) to reevaluate the baby food situation. Well, I didn't see any harm in giving the little guy some rice cereal. So, every morning he has been getting some. He does well with it! He obviously isn't eating a ton but he opens up his mouth and accepts it. He may make a funny face but with each passing day he will grow to like it more and eat more!

Meds: All his meds are still the same. The plan is to let him out grow the doses of Lasixs and Sildenafil.

Development: Frankie is a little bit delayed due to his belly but not by a ton! He's doing so much now and his personality is really starting to shine through! He's such a sweet, good baby, truly. The main things we are working on are tummy time. He hates it but it's crucial for his development so it's another thing I just keep working on everyday. He has a speech therapist and a physical therapist that are supposed to come weekly but that doesn't ever happen! Lame! Good thing he has me! :)

I do believe that's all for now. He is doing wonderful! We still continue to wrap his O daily with a little bit of compression since it's still not the size it was before surgery. It'll get there again! It looks great though! It's all skinned over (with new reddish skin) except one small spot. The things this kid has done thus far in his life amazes me everyday! Toughest kid I know! LOVE HIM!

Love to you all and thanks for the continuous love, support and prayers!

Super excited!

He's so darn cute when he sleeps!

Frankie chews on his arm like it's a piece of fried chicken!

Can you hear me now?

Today we went to the ENT. When Frankie was still in the NICU, the first time, they were unable to do his newborn hearing screening. This is because he was 3 months old and knew what was going on. As soon as the lady tried to hook things up to his head while he was sleeping (you don't mess with Frankie when he's sleeping, he's like his mama) he screamed! So, that didn't work. While we were there they did a couple hearing tests on him so that we didn't have to do the ABR and sedate him. I wasn't down for the sedation for a damn hearing test when we know he can hear! They did have us worried just for a minute. They kept saying there was fluid in his left ear that may mean that he has a middle ear problem and he may have mild hearing loss in his left ear. Really?! Like he needs one more issue! Well, turns out, there is no problem. He passed his hearing tests! They do want to see him again when he is 10 months old. They say a lot of children have a small amount of fluid in their ear and it eventually goes away. If it doesn't then it may cause issues but they said they couldn't even see the fluid there was such a small amount, they could just tell there was some there because the inside of his ear wasn't as "shiny" as the other side and the way his eardrum moved. We're just thankful he's got good ears! It was the LONGEST APPOINTMENT EVER! They were so slow! Our appointment was at 2:30 and we didn't walk out until 4:45! They were just so slow!

Our next appointment is with newborn medicine and it's on Thursday next week. I will update then unless something else comes up!

Frankie is doing so great! We are so happy! I pray each day that he continues down this great path and that he grows stronger and larger each day! He's pooping well (big deal for an O baby!), keeping his food down, doing well with his physical therapy goals and he's a happy, flirty little baby! Thank you all for your continuous love, support and prayers! We can't do it without you! Much love!