Back at Home.

So, we've been home for two days now, Jaime and Jared are just fine...Tom, however definitely has the flu...BLAH! (I told him he has to stay in the basement until he's 100% better, we don't want his cooties on the main floor.)
Other than Tom being sick, I don't have any fun "drama" to report about the trip home like the first time we brought Jaime home from Cincy. It was much easier with him just having his NG. We stopped at Titi's to pick up Jared and that was it. (Thanks for watching Jared, Titi, he had a blast with you and David's Legos...by the way, he brought 3 of them home.) We did give Jaime a few "car seat breaks" but other than my sister's they were all done in the car. Tom would stop at a rest stop and I would take Jaime out in my lap to feed him. I didn't want to bring him into a "germy" rest stop someplace. It worked out just fine.
Jaime slept through the night the last two nights, but hasn't napped at all during the day. He is taking his bottles and food just fine. Actually, yesterday, on complete accident, I pulled Jaime's NG out...it got stuck on my shirt when I was putting him in the pack-n-play to nap. Needless to say, he screamed and didn't end up napping. Instead he had a bloody nose from the "trauma" of the NG being yanked out of his nose and had a bright red face from the duoderm being ripped off of it. I felt terrible. I left the NG out because of his nose bleed, ironically enough, since the NG has been out, Jaime has taken 100% of his bottles...actually, 30mls more yesterday and he ate 2 oz of sweet potatoes and 2 oz of carrots. He's doing great with feeds, we've got a scale and we're watching his weight carefully...with clothes and a diaper on, Jaime was 15lbs 4oz today, we know that's not accurate, but from that, we can tell that he has gained some weight. If he stops gaining weight or not eating well, we'll put the NG back in, but for now, we're going to let that nose of his clot and heal.
We weighed Jaime when his therapist was here. He had both PT and SP. The SP was the one who wanted him weighed. She gave me some feeding ideas to help him gain weight and she said that he has "low tone" in his jaw muscles which is why he "spits" his milk. Who knew!
PT didn't do all that much today because she had to "restart" his case since his recent hospitalization. Stupid paperwork!
Tonight, Jaime had a HUGE screaming, crying fit...out of nowhere. Reherniation will FOREVER be in the back of our minds when he does this. UGH! I HATE CDH! I hate even more that he went undiagnosed for so long, I'm sure he had some pain associated with it. I spoke to an ombudsman at Rainbow's about this today. Ironically enough, it was the same person I spoke to when Jared's hemophilia was misdiagnosed. She couldn't believe that such a thing could happen again to the same family. (Frankly, neither can we.)

That's about all...here are some pics from the last 2 days. Enjoy!

Jaime in an outfit Titi got for Jared when he was 3 mos. old.

Jaime in his favorite swing.

Still unsure about the Bumbo seat.

The Boys!

Chillin' on the couch.

Jaime checking out his 1st Christmas present from Grammy & Poppy.

Oooo, it makes noise, cool!

RCNIC Discharge!

The following slide show is from our last 24 hours....Jaime was discharged this afternoon, he's doing well. We literally just got HOME....to Wickliffe!
Thank you to the entire RCNIC staff who cared for Jaime, once again! We couldn't be where we are today without all of you! :)

Enjoy the slide show! (More info tomorrow....)

7 Months Old!

Happy 7 Month Birthday, Jaime!

Dare I say that we got "good" news today on Jaime's "7 month" birthday? Looks like, if all goes as planned, that we will be home by the weekend! :)

Jaime's stats: Head circumference 43cm, Length 25 1/2 inches and Weight, I'm pleased to announce is 14lbs 6oz! That 30 calorie formula we're pushing into Jaime sure is working...at least in the gaining weight department! (He's having HUGE pooping issues, though!)
Jaime is taking about 85% of his bottles by mouth with the rest of them being gavaged through the NG. (All that means is we "push" it through a syringe into his feeding tube.) Yesterday he had some squash and today, apples and prunes (for the obvious reason mentioned above). He is still off of O2 and satting well for the most part. He seems to tire more easily, but I think he will get stronger with time. He's been waking up only once a night for a feed, I hope this trend continues. We actually upped his daily intake so that we can eliminate a night feed. Hoping that in the future, we can up the daily intake again to eliminate night feeds altogether.
Jaime started to tolerate his feeds over the weekend, which is great! We just need to work the pooping thing out, he's back on daily MiraLax and prune juice.
Developmentally, Jaime is doing very well! It's amazing what having organs in the right spot will do for a person! HA! He's now kicking both legs and reaching with both arms. Before, he was very limited to moving the left side only. Also "fun" news to share, Jaime has been seen pulling up on all fours during his PT sessions. This all on his own, too. I think some form of crawling is just around the corner for Jaime...maybe by Christmas? He's also starting to roll again. If you remember he was doing this in August and early September, then he re-herniated and stopped doing many things.
Mentally, Jaime is appropriate for a 7 month old. He's "talking" a lot, trying really hard to "repeat" sounds. "Hi" is one word we can get him to say and "Mmmm" for Mama. Liz and Amy were trying to get him to say their names...no such luck, sorry girls! :) Jaime is also VERY nosy! He CANNOT be interrupted during a feed or he does not finish it. We have to literally pull the curtain, shut the door and not let anyone in the room except who is feeding him, so not to have any distractions. He's sooooo funny! He's back to being his "normal" happy self!
As for the hematology issues, well, I had a fairly long discussion with the hematologists today. There was talk of sending Jaime home on Factor which would mean he'd also have to come home with some sort of semi-permanent IV access. Well, I told Hem/Occ how strongly I was against the idea of sending him home on Factor. First of all, a placed IV can be a huge source of infection not to mention a bleeding risk in itself. I had many other reasons, too, Hem/Occ listened and agreed as long as I have follow up they were OK with no home factor except for when he has bleeds. Also, the jury is still out as to whether or not Jaime has a platelet disorder, this will be monitored as he gets older. (Testing for it requires a significant amount of blood, no one is quite ready or willing to dive into this one.)
As for follow-up, you all know how I feel about the previous hospital we sat at for 21 days undiagnosed, so I'm thinking, after talking with several people down here and other CDH mom's that we will be doing follow-up at Akron Children's Hospital. It's about 40 minutes or so from our house, but worth it if the care is as good as we're told it is. Our surgeon, Dr. Tiao has referred us to his friend up there, along with others, so that's our plan for now.
I think that just about sums everything up! Wish us uneventful days this week so that we can go home! Thanks!
Enjoy the pics!

This is a picture of the new wing of Ronald McDonald House from Jaime's room.

Jaime just finished his squash!

Jaime in his bath, what is he looking at?!?

Yep, that's right, folks, Jaime is watching TV in his "hot tub."

His, "what did I do?" look.

Chillin' in his thermal underwear....I jut LOVE these!

Have a good one....