Baby Frankie's Journey: Just shy of 7 months!

It's so hard to believe but Frankie is almost 7 months old! He's really growing! He has such a personality now and I LOVE every second of it! Frankie can now sit up on his own and is working on standing up as well as clapping his hands and babbling! He talks a ton now! He is also doing great! He now weighs in at 13 lbs 10 oz! He's gaining very well! Let me break things down for an overview of it all...

Feeding: Frankie is still on his NG tube, unfortunately. Remember he used to have his food go in over 3 hours and then he was off for 1 hour? Well, now he's on for 1 hour and is off for 3 hours! Yay! I've been working hard on this. He is now getting a chance to start feeling hungry! Twice a day, before his feeds go back on, I am offering him his delicious home made baby food! I taste test it all first to make sure that it's good. I don't want to feed him it if it's nasty! If I won't eat it, I'm not offering it to him! We will keep working towards reducing the time the feeds go in in hopes that he will be able to tolerate an entire feeding at once and we can pull the tube for good! A nutritionist came by the house on Friday and we talked about the best way to do this. I look forward to start taking those steps on Monday! Why wait until Monday? Frankie will be finished with his steroids. Why is he on steroids? That leads me to the next topic...

PPHN: On March 13th Joe and I noticed that Frankie was acting a little strange and eventually his coloring didn't look too well. His face was grey and around his lips was purpleish blue. We kept increasing his oxygen and his coloring wouldn't return to normal. What else sucks is that his pulse ox machine wasn't working either and hadn't been for a few days so we didn't know how low his saturation really was! We packed him up and took him to the ER. When we leave the house we always put him on a small, portable tank of air. When we put him on this his coloring returned to normal and he got more life back into him. When we got the the hospital they did x-rays, ran a few tests and did an echo on his heart. The echo worsened and the cardiologist was concerned. Frankie was admitted to the cardiology floor for the night for observation and was put on a steroid burst. What ended up happening was his oxygen machine at home wasn't working as well as his pulse ox machine. We found this out when we brought him back home from the hospital and hooked him back up to it and he started to look funny again. Needless to say, we have switched home health companies because that was the last f*#%ing straw for me! They have been a nightmare to deal with and this was it! I could've choked someone! Anyhow... The steriods should help improve his PPHN and we do believe that it has. His oxygen saturation levels have been amazing! So good that it doesn't seem like he even needs oxygen! He is hardly on any! He is only on 0.2 liters and the lowest it goes is 0.1 liters. Hopefully he keeps in this direction and we can get him off of oxygen after his hernia surgery. That's the next topic...

Surgery: Our next appointment is Thursday next week, the 19th. During this appointment they will look at his O (no surgery on that for a long time though) and we will discuss the options for his hernia surgery and we will also schedule it. I will definitely post an update about this on Thursday next week because we will also be seeing his neonatologist and cardiology (follow up after steroids have ended). His O is looking great and it is decreasing in size little by little. After hernia surgery, we will start compression wrapping it and hope that his breathing lets us do it! It will just be a slow process, but that's okay!

ASD: The cardiologist will look at the echo we will be getting on the 19th and let us know what he thinks. But, Frankie will definitely be getting heart surgery by the time he is one.... ;(

Frankie qualified for the First Steps Program (YAY!!!!) and is being seen by THE BEST occupational therapist (weekly), physical therapist (monthly) and nutritionist (monthly)! We are so lucky to have qualified. I am so, so thankful for these gals, they are truly amazing! A few therapist still stop by through his insurance when they don't cancel or reschedule literally ten minutes before his appointment!

No medicine changes for the Tank.

I believe that is all for now! The next update will be on the 19th! Feel free to ask any questions if you think I have forgotten something! Love to you all and THANK YOU for your constant love, support and prayers for our Tank!