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!