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!