Tuesday, June 26, 2012

Not much new...

Well, when we went to the cardiologist today. We expected to know the exact surgery that they would be doing on Frankie's heart and a pretty good idea of when. Here's what happened:
-Weight: 15lbs. 1 oz.
-Length: 26 3/4in.
-Blood pressure: No clue. I just know it was good.
-Oxygen saturation: 96%.
-Heart echo was done.
-Dr. Grady came in and said that the echo looks good. Nothing is worsening and the hole is still there, obviously. His pressures in his heart and lungs look good, too. This is good to know because he hasn't had an echo since he's been off of oxygen. It's good to know that things are stable and pressures are looking better.
-The three different kinds of surgery are still the same:
     1. In the cath lab through the vessels in the leg. This would be the best thing for him because it's out patient and easy recovery. The likely-hood of this happening.... Slim. He's too small.
     2. Small incision and slight opening of the sternum to try and place the device (disc like device to close hole) around the hole.
     3. Larger incision and complete opening of the sternum along with stopping the heart, putting him on a heart and lung machine so that they can physically sew the hole shut.

The hope? Number 2! It's definitely possible. If that's the route we have to go, they will try that first and if it doesn't work they will go ahead and do number 3. It will be during the same day. They won't sew him up and try later, it's all right then and there. The REAL hope?! Number 1! It just isn't too likely. He's just too small which leads me to his growth.

-The doctors haven't been to thrilled recently with Frankie's growth. It is definitely growing, in length but, not in weight so much. In the beginning of May we reduced his NG feedings by 40% (okay by dietician) to promote oral feeding. Frankie didn't give two shits. He just lost 1lb. Which is a lot for him considering he doesn't have anything to loose. So, I returned all of his calories. I have also increased his calorie intake within the last week. So, for his height and weight he should be getting 640 calories a day. Frankie has a new dietician that sucks balls, to say the least. She doesn't take into account that for one, he's really active and two, he is working harder because he has an ASD and PPHN. That being sad, he needs more calories due to that two factors. Initially I just added an extra feeding overnight that was an extra 137 calories a day. He definitely gained weight but after a few days he was gagging in the morning because it seemed like too much. I've reduced it a little so that he's getting an extra 104 calories a day and I will slowly increase every few days so that it's not just a big jump. Fingers crossed this works and he can fatten up!

What's next?
-Dr. Grady is going to speak with his colleagues within the next couple weeks. Every Wednesday they speak about their patients together to see what is best for them and bounce ideas off of each other. Tomorrow is too soon for them to talk about him but within the next couple weeks, they will talk about Frankie. Then, Dr. Grady will call me and let me know what they have decided and schedule another appointment from there. Dr. Grady himself will not be doing the surgery. It will be one of his partners Dr. Ballser (I am probably spelling that wrong).

That's all for now. If I think of anything else, I will post. Much love and a HUGE thank you for all your thoughts and prayers. We love you all very much!

Thursday, June 14, 2012

It's so nice...

To hear wonderful things about our baby!

Today, we went to the neonatologist for a little visit. Frankie weighs in around 14lbs 8oz. While yes, this is small, and no, he is not on the growth charts, he has had a steady gain for himself! They just expect their patients to have tripled their birth weight by 12 months. Frankie was 5lbs 15oz at birth so he needs to be roughly 18lbs by his first birthday. I do believe this is doable! Fingers crossed! We did have a set back at the beginning of May because we had cut his ng tube feeds by 40% to encourage more oral feedings. Not only was he still uninterested, he lost some weight. So, we had to increase his feeds back to normal and he had to gain that weight back. If he wouldn't have lost that weight he would be roughly 15lbs. 8oz currently. Bummer!

The doctors we super impressed with Frankie today! Here's what they had to say:
-He looks amazing! <insert cheek pinching> :)
-He's getting so big!
-They expected him to sit up independently at 6 months, he did.
-They expect him to crawl by 10 months, he's trying.
-He is advanced in the fact that he plays with food and brings it to his mouth (yet doesn't manage to eat much).
-He's advance in his social/emotional/personal skills.
-They were very impressed with all his little "tricks" and couldn't believe the things he could do!
-Loved that he was trying to stand and crawl.
-He's a charmer! ;)
-Overall very happy and impressed with how he is doing!

It was so great to hear these things today! We didn't really know what we would be facing today (you never know from each appointment with an O baby).

We took a visit up to the NICU to see his girlfriends. We were happy to see them all! We don't go back to see them until OCTOBER! And, when we do it will be for development testing (Frankie will see it as playing).

What's next? Frankie goes to see the cardiologist on June 26th to talk about his heart surgery: how they will do it and when they will do it, probably do an echo on his heart as well.

                            Much love to you all! I will keep updating as much as I can!