2 months post op!

It has been 2 months today since Frankie has his belly repair! I can't believe how quickly time has gone. The child is truly a tank. He has been without his feeding tube for about 4-5 weeks now. Consuming most of his calories through his fortified pediatric drink, but he's doing it! Gotta start somewhere, right? He rocks! Short and sweet post right here! Love to you all!

 

 

Speechless <3

Speechless defines the way I feel, 100%.

Adjective Unable to speak, esp. as the temporary result of shock or some strong emotion. Strong, happy emotions flood me as I write this! Frankie went and saw his surgeon for a post-op visit. We couldn't have asked for a better visit. Frankie has maintained his weight! He is going on 3 weeks with no feeding tube! How lucky are we to FINALLY see this day?! Man, it has been a long time comin'. So thankful. Also, Frankie's belly looks great and feels great! All is holding well together. Get this... Frankie doesn't need to be seen again for 6 MONTHS! That means only yearly visits for cardiology and a 6 month visit for surgery! After that, I'm sure they'll be yearly, too. I'm just so happy, beyond happy! He is one incredible, incredible child. BLESSED.  Here's a photo of Frankie with the astounding Dr. Keller himself!

We can not thank Keller and his team enough for all they have done to not only save our child's life, but improve it. Bring normalcy back to it. Love them all tremendously! 

One month post op... + a few days! :)

I don't even know where to begin. There's so much good stuff to talk about! Lets see...

First and foremost... Frankie has NOT had his ng tube in for 2 weeks! You heard me right! He's been successfully meeting his caloric intake without it! It's wonderful! Frankie needs around 1,000/cal/day. Just from his soy pediatric drink alone, on average, he gets 750/cal/day from that. And then add the additional food he's eating. He's doing great! No need to put the tube back in at this point (or ever as far as I'm concerned!). Frankie will continue to see his OT, Ellen, once a week. The dietician is watching him very closely also since the tube is out. Lots of weight checks. So far, he's maintaining. 

Frankie saw his PT on Thursday... He has graduated from physical therapy! Her services are no longer needed! It was emotional to say goodbye! She (Angela) has been with us since Frankie was 5 months old! We will miss Angela! 

Frankie's scar looks great! Each day it's looking better and better. His follow up appointment with his surgeon is on Thursday. I'll be sure to blog about that as well. And hopefully get a picture of Frankie and the amazing surgeon as well! He's done SO much for Frankie to change his life, it's unbelievable. 

Frankie's been having a wonderful summer. Lots of swimming, water play, park time, museums, hanging out with Rae and Riley. It has been so wonderful! 

And what else is wonderful? When someone looks at our son now, it's genuinely because he's handsome. Not because there's a tube on his face and they're wondering what's wrong with him and why he's "sick". It's so nice! 

Love to you all! Lots and lots! Now for pictures! 

Always doing the Al Bundy! Look at the belly! 

Yes, that's my son. Smelling his feet in the car! 

            Driving at Happy Joe's! 

2+ weeks post-op!

Frankie's kicking ass and taking names! I love every second of it! Here's how his appointments went...

Dietician and OT: The last 3 days I have been making an extensive list of what Frankie consumes orally. I'm going to submit these 3 days to the dietician and she will input the information into her database and see how many calories a day he's been consuming and all the nutrients and water he's getting from his food. Frankie has been eating like a mad man and both the dietician and ot are very impressed with this change! And we're all hoping that this continues. When Frankie went into surgery he was roughly 21lbs. When we got home, he was only about 19.5lbs. When he was at the pediatrician on Tuesday, he was back to his 21lbs! Go Frankie! Frankie is very close to getting rid of his ng tube. Once he does some catch up growth and maintains this good eating, we are saying adios to it! Praying, praying, PRAYING we can say good riddance to it by his 2nd birthday in September. It's doable! Frankie is not getting any food through his tube at all during the day. He only gets 2 feedings at night. And at this point, it may be an over kill in calories and he may not need the night feeding. We will see what the dietician has to say. 

Pediatricajn: Frankie went to the pediatrician on Tuesday for his surgery follow up. She was so impressed with Frankie! She was almost in tears of happiness! She couldn't believe how well he was doing. The last time she saw him, he was getting extubated in the icu. She was very happy with Frankie and doesn't need to see him again until his 2 year check up! I am going to weigh him at home next month and then report it to her. She wants Frankie to be a little more than 22 lbs. I think he can do it! 

That's all I have for now! I can't wait to hear from the dietician and see what she has to say about his calorie intake! 

Love to you all! 

Home for 4 days so far! :)

Frankie is without a doubt, a tank. Look it up in the dictionary and it'll say Francenzo Michael DiFranco. He rocks! 

Frankie is doing so well! His incision looks great! Yesterday, I took most of the sterile strips off. The top two were still stuck on pretty well so I left them on. Discharge letter said to remove them on 7/5. I will remove the others when they loosen up. He is eating a lot of food! Joe and I are very hopeful the food keeps up! We'd love to see the ng go! That would be the last and final thing! 

Frankie is back to running around, climbing, asking for Elmo and Choo Choo, doing his puzzles, putting trains together and coloring! The only thing Frankie is having trouble with is sleep...

There's still a bit of anxiety and stress when he goes to sleep. The last couple days he did really well. He went down fine for naps and bedtime but last night he slept from 8pm-10:30pm. And from then, he was up until at least 2:30am. And then back up for the day at 6:30am. He would freak if I walked out of his room so Joe ended up bringing him to our bed but he didn't sleep any. With each day, things will get better and he will fall back into his routine and forget about the scary surgery he just went through. Poor baby. 

Overall, he's doing super though! Tuesday he goes to see his pediatrician for a follow up and weight check. I'll do an update then. He doesn't have his follow up with his surgeon until August 1st. 

Good news on Frankie's O brother, Hayden! He was discharged today! So, thank you all for the massive amount of prayers you continuously give Frankie and Hayden. Means a lot! Love to you all!

 Frankie's belly tonight! Looking so good! 

Frankie was double fisting cinnamon sugar bagel poppers! Yum! 

Post Op Day 7

FRANKIE IS HOME! I can not believe it! He is doing well. He's more and more himself each day. As soon as he got in the car, he lit up. He started talking more, smiling and laughing more. Thank goodness! Once we were home, he ate well orally and played with all his toys. He didn't nap much though. He has the separation anxiety that I knew he'd get. He wants Joe and me to be here, in site, at all times. He's afraid, I'm sure, that someone is going to bother him or hurt him. We've gone through this before. He slept on me for about 30-40 minutes but that's all. He just fell asleep in his bed for the night. It was a struggle to get him to sleep. Broke my heart but he's good now. Getting these babies back on schedule is going to be some work! 

He's only had one dose of ibuprofen today and he seems comfortable. And eating a lot. Asking for food and water a lot. It's great. Praying this keeps up. 

He sees the pediatrician next week on the 9th for a follow up and then he sees Keller August 1st for his follow up with him. I have to be sure to get a picture of the two of them together.

Walking out of SLCH today, I was fighting back tears like you wouldn't believe. Once we got in the car and headed toward the exit, I lost it. I remember so vividly the first time we walked into SLCH when I was pregnant with Frankie. We were meeting the Fetal Care Center to talk about Frankie. A couple days before, I had gotten my amnio. Joe and I were sitting in a conference room with the fetal care coordinator, a surgeon and a neonatologist. Listening to the things they had to say was unbelievable. Lots of sad things and not the best of outcomes. The outcome of the pregnancy did not look good. But since Frankie didn't have any chromosome abnormalities and his heart looked good (so we thought) then there was no reason for us not to fight for Frankie. So, here we were walking out of SLCH with Frankie, 21 months old, repaired. Pphn is gone, ASD repaired and his O repaired. All the things that were battling against him, he overcame. Like a champ. He has defied odds countless times. Joe and I are so thankful to have such a stronger fighter and the support of all of our family and friends. 

Thank you all. So much. I will post another update in a couple of days unless Frankie starts doing cartwheels or backflips. :) it's possible! Love you all, very much. 

         In the car on the way home! 

                   Post op- 1 week. 

Post Op Day 6

Frankie said goodbye to 2 more things today! His O2 and his drain! Wait, make that 3. No more antibiotics either! He still has his iv in but it's not being used. They're  flushing it just in case. It'll be the last thing to go. 

As you can imagine, it's hard to sleep in the hospital. That being said, Frankie didn't nap well at all today (neither did Lu). It took me 2 hours to get him and Lu to sleep this evening since they were both overly exhausted. I kindly asked the nurse to have the tech hold off on vitals as much as she could tonight. We shall see how that goes. 

Frankie ate a lot orally today. Joe and I are impressed! We hope this keeps up! We've been slowly increasing his soy formula and he's doing well with that, too. 

The nurse told us that it's written in the computer for us to be discharged tomorrow. I sure hope so! We're all yearning for our home routine. 

Frankie got to go play in the rooftop garden today! Fresh air at last! He's still wobbly on his feet. Gaining strength each day. I'm just beyond thankful, blessed and amazed at all the differences a little sleep and healing from one day to the next can make! It's unreal. 

Lets all be sure to keep Frankie's O brother Hayden in your prayers, too. He needs prayers for rest, relaxation and strength. Don't forget about his amazing parents, too! Love to the Hoskins! 

Short and simple this evening. I like it. Love to you all! 

The hospital that has saved my babies life! This place will forever have a special spot in my heart! 

Post Op Day 5

I have to begin this post with a lot of thanks! First, to the big man above for continuously watching over Frankie and providing him with the strength he needs to continuously overcome the huge obstacles that have been thrown into his 21 months of life. And second, to all of our family, friends and the many, many other people out there that we don't even know who have been praying and continue to pray for Frankie. It's incredible. He's come a long way since Tuesday and he still has lots of healing to do but today he has done very well. 

Morning: Frankie slept through the night. He got much needed rest! Dr. Keller came by and took a look at Frankie and was very happy with what he saw. His belly looks good and sounds good. He's had several poops and lots of gas! The replogle was pulled and Frankie got the okay to start eating again! Only at 1/3 of his usual rate though. So far, he's tolerated it very well. We snuck in an Oreo and a Pringle, too. :) Frankie actually drank 120ml orally before deciding no more for the day so I put his ng in to do the rest. All of Frankie's leads were taken off of his chest and an iv out of his arm. He only has one iv now that he gets fluids through and his antibiotics (he won't be off of those until his drain tube comes out). 

Afternoon: Frankie officially left the icu! And hopefully for the last time ever! He is now on the 10th floor which is the surgical floor. It's SO nice to have all four of us in the same room! We've missed each other! We got all settled in and Frankie took a nap. 

Evening: Frankie has been super snugly and tired. He slept on Joe for quiet some time. They were so cute. I got some snuggle time, too. All of us are staying at the hospital tonight. In the same room. It's a big DiFranco slumber party! Now that Frankie is out of the icu, Lu can come into his room. And since I'm breast feeding, she can stay the night with us! We've taken over the entire room. Hopefully they don't get crazy up here and make us bunk with someone else! Anyhow, Frankie's O2 is at 1/2 liter. Leaving it there overnight and weaning more tomorrow. For pain relief he is getting a rotation of Tylenol and ibuprofen. It seems to be doing the trick. We're all off to sleep now. 

Much love and thanks to you all! 

No more replogle, leads and minus one iv! 

              Napping with daddy. 

                   Daddy pillow! 

                      Zzzzzzz........ 

                Both babies! At last! 

Post Op Day 4

HUGE day for Frankie the incredible! Frankie passed yet another ERT this morning and is officially extubated! Thank you Lord! He's been on O2 all day (like he used to be before his ASD repair). He was on 1 liter but they put him on 2 just to have the extra flow. His O2 sats have constantly been at 100%. I assume tomorrow they will start to wean the O2 but they wanted to leave him chillin' the way he is for 24 hours after extubation. 

Frankie is very jittery from the stop of all of his sedation medications. But not enough for them to give him any to make him chill. He's still pretty weak. He's trying to roll over to sleep on his belly but doesn't have the strength to do it just yet. As for sleeping, he didn't do much of it today. He has been so jittery that he wakes easily and has a hard time falling asleep. He literally just closed his eyes (7:29pm). I'm hoping he sleeps like a rock. He needs it. 

Surgery just popped in and took a look at him. His incision looks good, his belly is softer, he's tooted and pooped a couple times now! Big deal right there! I didn't think I'd ever be so excited about poop and toots! But I am! The plan is to take his replogle out (suctioning stuff out of his belly) and replace it with a ng tube and start feeding him tomorrow. Little steps in that department. We don't want to do too much too fast. 

Frankie is still getting his PD (therapy to break up the goop in his sleepy lung). He's coughing some up every now and then. Sounds yucky. His X-ray this morning showed improvement and they don't plan on doing one in the morning. Just continuing the PD. 

So, tomorrow (if all goes splendid this tonight) Frankie will start eating and move to the floor! Praying overnight goes perfectly! 

He's been more of himself today. Talking a little. Watching some tv and holding some toys. He's coming around a little bit at a time. Joe and I are so happy that we have our Frankie back! It's been SO hard for us not to see those eyes and smile or hear that voice! 

Here's a picture of the sleepy head:

Love to all! 

Post Op Day 3

With each passing day, things are getting better. It's nice. Frankie was more awake today, even though the breathing tube is still in. He hates it! Well, as he should! Today he gave daddy "fives", "ones" and "knucks". Amazing! Our baby is in there! It brought tears to my eyes. Frankie also did a lot of reaching today and trying to talk. Breaks my heart that he makes facial expressions that we know so well but we can't hear a peep. Hurts our hearts. Also, he kept pointing at me. I kept telling him as soon as that tube is out and they say okay, I will hold you! For as long as you'll let me! Ohh how we long for that smile! 

Frankie's day went pretty well. Uneventful which is nice. Very nice. He passed his ERT this morning but they wanted to give him 24 more hours of lasixs to rid some more fluid retention to help with his respiratory rate. We have been calming him just by talking to him instead of giving him a bolus of sedation meds if we can. He mellows easily but also startles easily. He doesn't want any clothes or blankets on him but his temp was getting low and he felt cool to the touch so we kept sneaking a blanket on but leaving his feet out because that's the one thing he did not want covered. 

Frankie got much needed rest today thanks to his awesome nurse Dustin and his awesome respiratory therapist John. They're a hoot! Not to mention, it's nice for Joe do have "dude" talk! 

So the plan after rounds tonight is to do another ERT and extubate in the morning! Frankie will more than likely need supplemental O2 just until his body makes the final adjustments. After extubation, surgery will talk about starting him on SLOW feedings. Not right away but probably at night. We shall see. We think Frankie will be a much happier camper after the tube is out. He keeps trying to roll over on to his belly to sleep (that's what he's used to) but he can't because of the breathing tube. 

Continue the prayers, love and support! They work! Thank you all, from the bottom of our hearts! 

                     Resting today. 

Post Op Day 2

Lets get down to it! 

Last night: Considering what Frankie has just been through, you'd think he needs ALL the rest he can get, right? Yeah, we thought so, too! All night long the nurse was irritating Frankie. Joe finally spoke up and said enough! And kindly but firmly asked that everyone be as hands off as possible. They tried to do his ERT (extubation readiness test) but he was getting bothered and desaturated so they decided to end it and leave him on the vent for today. Which I think he needed one more day. Frankie was irritable and wasn't seeming to respond to his mild sedation medication. Why you ask? Read on...

Morning: The iv that the sedation medication was going in to had blown out and they didn't know yet. So he wasn't getting any and was antsy and too awake to have a breathing tube. They switched to another iv (the one his fluid was going in to so they had to turn that off for a bit). Once he was mellow again, the iv team came in and poked 3 times to get the iv in. The actually ended up using ultrasound to get it because they were having difficulties. Once that was in, they returned to giving him fluid. Frankie has been getting a little respiratory therapy on his left lung. To be technical it has a small collapse in it. It's nothing to freak about. They do a little banging (gently) on his left side to loosen mucus. Then they suction it out through his vent. It's more like a "sleepy lung". Minor, but it's getting taken care of. The docs started giving Frankie lasixs every 12 hours to help him pee and get off some fluid since he was so swollen. No more fever. 

Afternoon: Frankie's vent settings have been weaned all day. They're pretty dang low. So, the plan is to do another ERT in the morning and PRAY for extubation. I think Joe and I are as ready for the breathing tube to be out as Frankie is. It's just scary. Frankie made three small steps this afternoon. We will take any size steps forward we can get! Frankie had his epidural removed and his catheter! He's been peeing well on his own! Surgery came by and said he looks great (very good to hear that from them!) and if he gets off the vent tomorrow, they will try giving him some food through the ng tube. We shall see! 

Evening: Frankie got a good amount of rest today. He hasn't had any major issues. No major desats in o2. He's holding strong. He's a tough dude! He was peaceful when I left to bring Lu home. He was a tad antsy at shift change when they messed with him but he calmed well. Joe has been staying overnight with Frankie so I can bring Lu home and let her sleep. He's a rock star dad. Joe and I are so used to being teamed up, side by side through every moment and since Lu can't come in to the icu it's been tough. My mom has been extremely helpful in watching Lu and visiting Frankie all at once. It's so hard as a mom to be in two places at once. My heart is so torn! I know Joe's is, too. We are both looking forward to Frankie moving to the floor so Lu can be in his room. 

Overall, Frankie's doing fine. As Joe and I both said today, slow and steady wins the "O" race! We have to do this in "Frankie time". He will let us know when he's ready for the next step. 

Side note from Joe: I love my wife and family very much and it is comforting that the other o baby is going through a lot of the same stuff. I had to towel off with a pillowcase after my shower and Frankie tries to pee on the nurse. -I asked Joe want he wanted to add and this was it!-

Please continue to send Frankie (and his O buddy and neighbor in the picu) and Hayden your prayers. We all appreciate it so very much! Love to you al! 

Post Op Day 1

Hey everyone,

Sorry for just now getting an update out. The first 48 hours after surgery are always so tough. Getting the right sedation without over doing it and getting the right about of pain medications. The perfect "cocktail" as my mom put it! :) So, let me break this down and try and get all the details I can in this post. 

Surgery: Everything went well. There were no complications or unexpected problems. The surgery only took about 3 hours. They were able to obtain full muscle and skin closure without any synthetic materials! That's amazing! We weren't sure if this was going to have to be a stages surgery or not. Frankie did not end up with a g-tube. With the placement of his liver and the way they would've had to have finagled it around his organs to his stomach, the surgeon wasn't comfortable placing it. If he is to get one, it won't be for 6 months. Honestly, Joe and I are hopeful that after he is fully recovered, we can pull the ng tube and just let him figure out how to eat by mouth. He's actually (prior to this surgery) been doing pretty well drinking is soy pediatric drink and eating some foods and telling us when he's hungry. Ideal as if the no g-tube may be a blessing in disguise. We shall see! 

Overnight: Frankie has done fairly well now is still intubated as of now (11:47am). The plan is to wean his ventilator settings today and tonight and then extubate in the morning tomorrow. They just don't want to rush it. He's initiating all of his own breaths which is great but still has to be weaned down on some pressure settings. Last night he had a couple of bad de-sat moments and his ox-saturation drop in the 60's and then another time in to the 40's (terrifying). They are trying to keep Frankie lightly sedated so that he can breath on his own. He is on versed for that and something they call "dex" (dexmedetomide) to take the edge off. He's on a small amount of fentanyl for pain. He has an epidural in his back that administers the good pain meds to his abdomen. His urine output tapered off last night. This caused him to swell a bit. They are planning to take his catheter out since it keeps clogging. This should help the urine output and relieve some swelling. If he doesn't urinate in 6 hours, it goes back in. Frankie also developed a fever last night. It's not as high as it was last night but he still has a mild one. They're doing urine, blood and respiratory cultures to make sure there's no bacteria growing. 

The plan today is just to wean his vent settings and make sure he remains comfortable. And get him to pee! I do believe that is all for now. I will update Facebook later this evening. 

Please keep Frankie in your prayers through this difficult recovery process. He is strong but all the prayers and good wishes definitely help our Frankie! Also, please keep his fellow O buddy Hayden in our prayers, too. He is just a few rooms away in the picu with us. 

I'm posting pictures of Frankie's surgery. They aren't gruesome but may not be for everyone. We are so proud of our son Frankie and want to share all of his amazing strength with you all! Love you all and many, many thanks!!!!

                    Last O picture, ever! 

                     Muscle closure! 

                    All closed up! 

       Flat belly! This is just after surgery.    Our first time seeing him. Still intubated. 

           WE LOVE YOU FRANKIE! 

A letter to Frankie.

Dear Frankie,

The last 21 months of your life have been nothing short of a roller coaster ride. From your birth day to your first nicu stay. From your bowel obstruction to your second nicu stay. From your pphn flare ups to your ASD repair. And from your most recent cardiology visit (no my evidence of pphn and a healthy heart!!!!!!) to today.... You continuously amaze not only your daddy and me, but the entire world! You have an unsurmountable amount of love, STRENGTH and courage! 

You've been known for your O, Frankie. It's made you who you are. It's the only way we have all ever known you. So, to think, that tomorrow morning it will no longer be there is so strange. So bittersweet. To know that after tomorrow, all of your major medical concerns will be taken care of is unbelievable! To look at you the day you were born and then to look at you today, I never thought you'd be such a force! A force that has not only changed me but many, many other people! There are thousands of people, all around the world (from the US to Canada to France to Australia) praying for you! That think of you every single day! 

Tomorrow is going to be a huge day for us all. It's going to be tough for me to see you down and out instead of running around, giving kisses, playing with choo choo's and asking endlessly for Elmo! I'm going to miss that for a couple of days but I know that it will all be worth it. I will be looking back at all of this one day in amazement. 

So, hear me scream it out loud Frankie Michael... I love you! To the moon and back! You are my Tank, my force, my Buddha, my sugar beets. My EVERYTHING. And your father and I love you more than anything else in this world. We know that you will overcome this "small" hurdle just like you have everything else that's been thrown at you. I can't wait to see all that life offers you and what you make of it. You were obviously put here, on this Earth, to teach us all love and strength and many other things I look forward to discovering as you grow. 

With ALL my love to you Frankie,

Mama

1 week....

One week from today, Frankie will no longer have an O. Is this reality?! After 21 long months, I'm hopeful this is either his last or second to last surgery. God has blessed us with the strongest child. LOVE. 

Anesthesia Consult...

Yesterday, we took Frankie to SLCH for his anesthesia consult for his surgery on the 25th. All went well. We went over the usual business:

-Versed to calm him before they take him back. 

-Gas to knock him out. 

-Insert IV's (several I'm sure), ART line, possibly central line (hopefully not). Anesthesia meds through IV.

-Intubate him. 

-Surgery. 

-Always the possibility of a blood transfusion (Donate blood everyone!)

Surgery will be roughly 4 hours. 

I'm having a very hard time getting ready for this. Lulu can't go in to his ICU room or stay over night at all. Once he's on the floor, she can go in to his room but not stay the night. 

Lord, give us all the strength (especially Frankie) to make it through this. 

One month...

One month from today, Frankie will be getting his first (hopefully only) belly surgery. Sheesh, my heart aches. 

Frank the Tank!!!!!!!! 

Holy moly, it's happening!

We took Frankie to see pediatric surgery today (Dr. Keller) and he is ready to start Frankie's O repair/closure surgery! Hopefully only one surgery is necessary but most likely a couple. 

SURGERY IS SCHEDULED FOR JUNE 25th! Early morning. Not sure on an exact time until the day before. 

Is this really happening? I swear I just was in the OR delivering him and being terrified! And I swear we were just in the NICU wondering when we could take our baby home! I'm happy, scared, nervous all at the same time! This is a MAJOR, MAJOR step. Like, the beginning of the end! Wow! -tears in my eyes- 

Keller is hoping to put a g-tube in at the time of surgery but if he has to use alloderm, he's going to wait until it's healed to do that. Otherwise there's far too much risk for infection. We DO NOT need that! Dr. Keller is very confident in Frankie and thinks he will do great. He said his heart was the worst of it all and since that's all fixed, this should be a breeze for Frankie! Very hopeful that is the way things will go! He's been through the toughest part already so he should rock this! Keller anticipates us being there for a week. Being in the ICU the first night as long as there's no complications. Then we will move to the surgery floor. 

I am typically on top of all my questions and concerns, but today I was just fumbling over my words once he said let's do this! All my questions went out the door, lost in space. I was a nervous wreck. I had I apologize to the doc because I was all over the place. He understood! 

Anyhow, I'm rambling. This is a big deal and I have all the faith in the world that Frankie will do well and that the doctors and nurses will take exceptional care of him, as usual. This is just so scary. These next 6 weeks are going to be tough for me, emotionally but as a family and with all of the love and support we get, we will all get through! 

If there's questions (since my mind is all over), don't hesitate to ask me! 

Send your prayers to Frankie! Love you all! And thank you SO MUCH! 

Chilling at the doctor today! :) 

Can I get an Amen?!

Cardiology visit today was AMAZING! Frankie has yet again, defied the odds and kicked ass! Prayers work! 

So here's how it went. Frankie had an echo done to look at his asd repair and pphn. Surgery wanted Dr. Grady (cardiologist) to give the okay for them to repair his belly if his heart and lungs could handle it. Frankie did great during the echo. Chilled, watched his Elmo with daddy while Lu ate (as usual!). We went back to our room and Grady came in and gave the best news!  NO evidence of pphn anymore! And the okay for belly surgery! AND no more sildenafil (Viagra)! He's been on that since birth! So now Frankie takes NO medications! How freaking sweet is that?! Dr. Grady feels as if Frankie will do well as he's shown us he can do. He said he may or may not do an echo right before the surgery since he will be off the meds but he's pretty much out grown his dose so there may be no need to do one. If that's the case, we won't see him for a year! Unless complications arise during belly surgery. 

Joe and I are beside ourselves. This is the best news we've had in a long time! For them to tell us no evidence of pphn is unreal. When we first were told about it and explained the complications and the likely hood of him outgrowing it, we were so scared. It very well could've been what took his life. I remember the doctors just doing trial and error and being hopeful things would work and they have! Tears were in our eyes! And thankfulness in our hearts! It's not over yet but dang, what a hurdle that's been overcome! This child is truly a miracle! He doesn't even know how amazing he is yet! He's so special, a blessing. And I can't wait to see what all his life has in store for him! 

Thursday we meet with the surgeons and I will update again after that. THANK YOU, THANK YOU all for all the prayers and support. They're working. For sure. Hopefully this belly surgery is the last hurdle for the tank to overcome. Love to you all! 

Here are some pictures of his belly today. And step by step of how we wrap it. Pardon his weewee. I don't have an app to edit pictures on my phone. 

Applying Xeroform:

Wrapping with gauze:

Ace bandage:

And complete!

Weight check...

In January, Frankie weighed a little over 20lbs. A few weeks after Lu was born, he got a nasty stomach virus that took him down to 18lbs- almost 19lbs. Yesterday at the pediatrician, he was back up to 20lbs! He's recovered those 2lbs! Sweet! We are going to continue to give him extra calories as he is still so small that he's not on the growth chart for weight. I'm praying he can continue to gain weight and good, so that way he's ready for his belly surgery. He needs all the extra weight he can get. It's so crazy to have one child not on the charts and the other in the 93rd percentile in weight! Talk about the extremes! Anyhow, that's all for now. Next appointment is with cardiology on May 16th.
Thanks for all the love, prayers and support. Xoxo.

Quick update!

Hey all! Sorry I haven't posted lately! No news is GOOD news!

Frankie is the BEST big brother ever! He is the sweetest, funniest, kind hearted little boy! He loves his Lulu!

We go see cardiology in about 2 weeks to talk about getting clearance for belly repair in June.

Wednesday Frankie goes to see the pediatrician to get a weight check. A few weeks after Lucia was born, frankie came down with a nasty, wicked stomach virus that landed him in the hospital 2 nights. And he lost a lot of weight. We've been giving him more calories in hopes to gain that weight back. Lucia will have her 8 week check up that day, too!

Frankie speaks so well now! It's crazy! 3 word sentences sometimes 4 words! He does puzzles, runs, attempts to jump, climbs everything, and is as busy as ever! Loves to slide and be outside now that the weather is finally warming up!

We're still seeing Frankie's Ot twice a week to help with eating. He is slowly eating more and more by mouth and will try almost anything.

I think we finally have Frankie's sleep back to normal. He was having severe separation anxiety for a couple weeks. He would literally have panic attacks at bed time. It was heart breaking. He seems to have come around on that though. He still doesn't like when I go to the bath, to do laundry or run upstairs to grab something. Often that leads to tears and lots of calling out for mama! God love him.

Overall, Frankie rocks! He's so cool! Fun little dude to be around! I'll update again after his pediatrician on Wednesday with hopefully good news on his weight! Love to you all!

Light at the end of the tunnel?

Long time no post! I can't say that's a bad thing! Where to start? Frankie is doing exceptional!

Today, Joe and I took him for a surgery follow up appointment. We had a lot to discuss with Dr. Keller (pediatric surgeon). Joe and I both wanted to express our concerns (some things we did not agree on. Typical in life.) about Frankie's belly. Overall, his belly is doing great. The concerns lied within the wrapping of his belly and his feeding tube.

-Will the wrapping cause scoliosis?
-Will is deform his rib cage?
-Feeding tube makes him gag.
-Pulls tube out.
-Tape tears up his skin.

The list could go on and on.

Joe, more so than I, is ready to start the process of getting little Frankie all put back together. Of course, I want my child to be "normal" and be finished with his surgeries but the thought of it makes me absolutely sick. After talking with the doctor today, I feel better. Not completely, but I feel as if this process is ready to start. Here is what the doctor said...

He is ready to get the ball rolling on putting Frankie's organs inside. We have to have cardiology's approval first. We will be seeing cardiology on May 14th and we will see surgery that day, too. If cardiology gives the "all clear" on Frankie's heart and lungs, then Dr. Keller wants to get him on the books for June. His first repair, possibly his only repair, but his first for sure.
What exactly will be done? Dr, Keller will open up Frankie's O and lay things where they go for an O baby. Hopefully there is enough of his own muscles there (he felt a lot of muscle today which is nice), if not, they will use a piece of mesh to hold them together. Frankie has some good skin grown up on his O and they will use that when closing him up on the outside. There is a good chance that they will use a small piece of alloderm also since he doesn't have a ton of the good skin to use. Alloderm is collagen sheet obtained from human organ donors. It consists of the deepest layers of skin and contains no living cells. This is commonly used among the O babies that I've seen. While he is in there, Dr. Keller will try and put a g-tube in as well. A g-tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. We are really hoping that this can be done at the same time so that Frankie's face, throat and nose will be free of the ng tube and hopefully it will promote better eating. If he is unable to put the g-tube in, it will be placed a few months after the repair surgery. Frankie is currently still getting 75% of his nutrition via tube and the other 25% he eats orally or not at all. Some days are better than others.

There is no exact plan of what will take place or how things will be placed until the doctor gets in there and starts on things. Each O case is just so different and complex. I am happy to know that the doctor thinks that Frankie looks great and is ready to begin this. I just didn't want to rush in to something this serious and not have him be ready. Frankie will be in the hospital for awhile, not sure on the time frame. My guess is a couple weeks or so. Hopefully he will only be on the ventilator and need that breathing assistance for 24 hours or less. It all depends on how his lungs and heart react, which I'm sure will be fine since his heart is repaired. After surgery is complete he will either be in the PICU (pediatric ICU) or back in the CICU (Cardiac ICU). The only reason he would go to the CICU is if the cardiologist becomes concerned with his heart and lungs. Either way, surgeries team will come see Frankie where ever he is and take great care of him as usual.

Joe is really pumped to get this process going. When the doctor finished talking I told him I felt like I was going to throw up. This little man is my whole life and I just get frightened of all the "what if's" and the possibilities of things going wrong. I know the likely hood is slim but I am his mama. It's what I do! Thankfully, this child is incredibly strong and has already proven that to us many of times. I know that he will breeze through this, too.

I believe that is all for now. Feel free to ask any questions you'd like. I tried to summarize today's appointment to the best of my ability but I could have missed some things. A lot was said. Love to you all and prayers to Frankie for continuous strength, good health and growth to get him through this repair in the summer!