Day 65: Tired of blogging...

When I arrived today, Frankie was getting another echo done. They just wanted to double check on his PPHN since he is coming off of his steroids. The doctor said that it looks a little better than the last one, which is great! While she was here we asked her about how much longer she thinks we may be here. She says she would love to send us to "the zoo"  (whenever they say the word home here, there's always a set back) before she is off service which is December 1st. I asked her what we needed to accomplish before we could go to the zoo and she said his eating issues. Since the PPHN is stable and the O is, too, it's now down to eating. Let me explain the eating...

They switched his fortifier over to one that is already partially digested. They are hoping that this will be easier on his belly and that there won't be any pga left before his next feed. Whenever there is pga left, they have been subtracting it from his feed (as we've said). This is causing him to not get full feeds, which then causes him not to gain enough weight. So, Frankie needs to have all his food digested so that he can get a full feed each time so that he can gain weight. I asked how much weight are we shooting to gain each day and she said 30 grams. He currently gains about 20 grams a day but since he is still spitting up, some days he looses and it becomes a wash. Once we get consistency with his eating and he keeps growing then we can go to the zoo. This is definitely doable in the allotted time frame! Let's just pray it happens!

He's still on .1 oxygen and his usual meds. He did have a weird moment today that kind of startled Joe and me. He was sleeping in Joe's arms and then all of a sudden woke up and was breathing extremely fast (over 100 breaths per minute) and his heart rate increased a ton, too (over 200). He breathes fast anyway and always will (due to the shape of his chest), but not that fast! We gave him some time to see if it would go down on it's own and it wasn't. He was just lying there, too. No crying, vomiting, attempts to poop, nothing. His face was also a little flush, too. So, I went and got the nurse just to check things out. She took a listen, all sounded good. His blood pressure was good, his temp was good, he was comfortable, not crying or anything. It was quite strange. The nurse got the nurse practitioner just to take a look and she said all the same things. His stats eventually went back to normal and he's been fine ever since. His oxygen saturation never decreased through all of it. We aren't sure what happened, but he is fine. It would have been one thing if he was mad and throwing a fit but he was just lying there.

Frankie got to meet aunt Beth today! Man, it's so good to see her! She's such an amazing person and I'm so glad she finally met him! Tomorrow he will be meeting Ben and Hannah! Can't wait! :)

Love to you all!

Day 64: Insert headline here

When I got here today, Frankie was just waking up from his nap. Oh my goodness... could he have been a little cuter? I don't think so! He was all smiles and was cooing up a storm! It was the best thing to walk in this room and see him like that. Man, we are so antsy to take this little fella home!

Frankie had a great day today. He's still not interested in his bottles. We're beginning to wonder when the day will come that he's interested. I guess it will be whenever there still isn't 20ml left in his belly from the previous feed. It's hard to want a bottle when your belly is full, can't blame the kid. His pga's (what's left in his belly) have been a little bit higher this evening. Anywhere from 20-35ml. They are still subtracting that from his 75ml feed so that he isn't getting too much volume.

He is a little over 20.5in long now and is just shy of 8lbs 4 oz now. So, he is gaining weight, just not as much as they'd like. But, he is gaining. Hopefully we can get this throwing up situation under control and he can start gaining more. He is still throwing up a little. He spit up a little before I got here today but once we were both here it was a little more. Still nothing like he was when this first started though. We'll get through it and then he'll be back to eating bottles. Hopefully sooner rather than later. At least he has that ng tube though!

We have been advised by a couple nurses that we should start watching our discharge videos and taking the CPR class. There are 4 dvd's that we have to watch and a CPR class that we must attend before we can take him home. They said we should hop to it so we aren't trying to cram it all in in the last couple days we're here because we will be doing so much other stuff on those days. We've also been advised to get flu shots so that we don't get sick and then give it to Frankie. Especially when we go home. Speaking of, don't forget to wash those grubby hands before you touch my baby. Mmm'k? Thanks ya'll! :)

Since Frankie is on .1 of his oxygen, the next step down would be regular old room air. So, we disconnected his oxygen just to see how he would do. He did good! His stats were good and he only dipped down when the pulse ox wasn't picking up which happens all the time. It misreads constantly. Thankfully we know how to work all the gadgets here! So,they may or may not try and take him off of it. We shall see. It's up to the doctors.

That's all for now. Love to you all!

Day 63: Frankie will be coming to one bright house!

Well, the Christmas lights started going up today. They will be on for display on Black Friday. A huge thank you to those who came and helped today-Johnny, Brandon, Jackie, Jaimi, Aiden, Mike, Marsha and Tino. We appreciate it so, so much! You all were so helpful today!

Whenever Frankie comes home, the house will be covered in Christmas lights. He will love it! He loves looking at lights! I can't wait to see him look at them.

Frankie had a good day. He spit up a little bit during the day but a little bit more this evening. We think it's because we move him around more rather than him lying in bed. The Pepcid does seem to be helping though because he isn't spitting up as much. His oxygen is currently on .1 and he is taking it well. He stats have been great. Hopefully we can keep it at this level and maybe even try him without it before we head home. It's all in Frankie's hands! Speaking of hands, don't forget to wash them before touching the little man (you'll be hearing this from me at least once every time now that I write the blog). :)

Nothing else has changed. Still on Sildenafil (this is more long term), not too interested in bottles (he took 6ml for me), steroid ween, his O is still smaller and it looks great. Lots of skin growing up on it.

Frankie gets to meet his Great (great in more than one way) Aunt Beth on Monday! I am really looking forward to this. She will be arriving tomorrow evening and the rest of the family will be here later this week. It's going to be a blast! Turkey day is such a great holiday!

That's all for now. Sending love to you all!

Day 62: Gosh, this kid is cute!

The love for a child is so amazing! It's so intense, like nothing else I have ever felt! We are so lucky to have this little guy. He's such a gift!

Frankie started his Pepcid today. It was given to him at 10am. After his 11am feeding, he did not throw up at all. He didn't throw up after his 2pm feeding either. He did spit up a little bit after his 5pm feeding and after his 8pm feeding but we think that was due to him being moved around. It was a very small amount. So, he hasn't thrown up like he was the past few days. Yay! We think the Pepcid may be working. Also, we remeasured the O today and it has changed A LOT in size over the last 5 days. We last measured it on 11-13 and it was 10 7/8" in diameter and the "bust" (so to speak) was 16". Today the diameter was 10 1/4" and the bust was 15". So we have lost 5/8" in diameter and an inch in the bust! That's a lot! Especially an inch in the bust. That means that things have definitely shifted and there is more inside his body now instead of the O, which could very well be causing the puking issues.

Frankie also got 3 immunizations this morning. They were his 2 month immunizations. Rich gave them to him this morning and then busted out of here and let the day shift deal with his crabbiness :) We love Rich! The shots made him a little irritable but nothing extreme. No fever or anything either.

So, we are still hoping to be home by the end of this month. Just a heads up to everyone, we will be those "crazy" parents for awhile about hand washing. Since baby Frankie has PPHN and it's his lungs that are the issue, we can not risk him getting sick. If he gets sick, it's more likely to be more severe and he'll have it much longer. Which means, we end up admitted to Children's Hospital again and they say if you leave and then have to return, you are usually here longer the second time because the child is more sick. It'll be 9 weeks tomorrow and probably somewhere around 11 weeks or more before we can leave. I can't imagine any more time in a hospital than this! Ahhh! So PLEASE, for Frankie's sake, wash your hands and if you aren't feeling well, come by another day. It's extremely important for him not to get sick. I can't reiterate it enough. We appreciate it so very much! His health and safety is our number one concern!

Nothing else has changed. He is still on Sildenafil, steroid ween, .2 oxygen and his O looks great!

Thanks for your prayers, love and support! We sure do love all of you!

Day 61: It's a Good Thing We Like This Little Guy

My son is 2 months old today. My father is 672 months old tomorrow. Both like their naps.

Nothing has really changed today. Frankie is still Frankie. They have cut back his feeds back to 75cc from the 80 he was at. They still can't figure out a cause of his ralphing all the time. Did something move in the omphalocele and apply pressure to the stomach? Does he have acid reflux? Does the fortifier not jive with him any more? Does he have a bug? No one knows. They say babies do go through phases like this, but as always we are more concerned because of his omphalocele. His breathing hasn't changed and his mood is still over all pretty happy even though he is up chucking every so often.

Alex and I are long done with being here. The hours have gotten even longer since we had some issue with boy's diaper not being changed, peeing on his wrapping, and laying in his vomit. Luckily we have a good nurse tonight and will absolutely take advantage of that. Hopefully this will be over in a little over a week before someone gets hurt.

Don't forget this weekend is Christmas Lights. Saturday and Sunday we will be doing them from about 9 am on. Drop in whenever you can, if you can. Thank you so much in advance.