-The hernia's: They're obviously still there and need to be taken care of so that they do not become incarcerated and cause more issues that are unnecessary. The plan? To tackle them in 3 months if Frankie doesn't throw us anymore curve balls (no pun intended!). Our next surgery appointment then isn't until April 19th. At this appointment Dr. Keller will assess Frankie and we will also speak with an anesthesiologist about how they will drug the poor baby. Since Frankie has icky lungs and a hole in his heart he has to have clearance from cardiology (Dr. Grady) to be put under. My hopes? They can give the little fella a spinal (it's been done for this procedure before) instead of knocking him out completely and putting him on a ventilator. Dr. Keller just wasn't sure if they could do the spinal because of his O. So, we shall see. I'm hopeful they can do it! :)
-The O: It's looking great. It's still larger than when we first brought him home, but it's smaller than it was right after surgery. It's just going to take time so shrink up again since we had to start all over after surgery. We hope to start compression wrapping the O after his hernia surgery if his breathing is still doing well and getting better. We will be compression wrapping it with an Ace Bandage and this will start pushing things back into his abdomen. The reason we are waiting until after the hernia surgery? Because if we start pushing down on the intestines and such, they are just going to be forced down into the hernia making it worse and possibly incarcerating it. Damaging intestines is not the way to go here. That just makes for another surgery that is very serious. As for surgery for the O itself, the surgeon doesn't think that he will be doing Frankie's first closure surgery until he is 2. This is fine. This gives Frankie time to really grow, grow out of his pphn and for us to aggressively wrap his O. He also thinks it will take a couple surgeries to close him up. We are hopeful that one does the trick. Obviously things could change and we could do it sooner or later but this is just his idea. I believe in his idea because he gets paid the big bucks for a reason and has seen many of these!
-The feedings: Frankie is still uninterested in taking a bottle. He will latch onto it better but doesn't like it when anything comes out of it. Therefore, he's still on an NG tube. I'm very hopeful that we can start cereal and baby foods next month and that someday he will be best friends with his sippy cup.
-PPHN- We do not actually see the cardiologist until Feb., 28th. When we see him he will do an echo to see how things are looking. The plan for the moment is to leave Frankie's dose of Sildenafil (Viagra) where it is at and let him grow out of it. The same goes for his Lasixs (diuretic). As for the oxygen, hopefully by this Spring he will be off of it. That is our and the newborn medicine doctors hopes. As we all know very well, Frankie is on his own schedule and does things at his own pace. We call this, "Frankie Time". As Dr. Keller so well put it, "Frankie is writing his own chapter in the omphalocele book."
Frankie is getting physical and speech therapy once a week from the therapists and daily from me. He's not a huge fan of the tummy time but it will get better. He's got great head control, loves sitting in his Bumbo seat, and we are working on reaching out to grab toys. He's doing well! He really enjoys his books, too!
Don't forget to sign up to walk and donate for Frankie's March of Dimes team! I have posted the link to my Facebook page. A BIG thank you to those of you who have already donated to this fantastic cause! That's all for now. Much love!
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