Wednesday, June 2, 2010

What's been going on...

OK, so now that all the "big events" are out of the way.  I want to let you guys know all the little stuff that's been going on with the little King.

The weekend of my sister's wedding I started Tripp on a new formula (Peptamen Jr.).  I know, how stupid was that?  Anyway, I started it on Friday morning... then Saturday night he started having some black tarry stools and I noticed a little bit of blood in it.  Which for him, is a HUGE deal.  Blood in his stool could mean a numerous amount of things.  So of course, I stopped the formula immediately.  I called the GI doctor (Dr. Serrano) on Monday (who I love, by the way.  As far as Tripp is concerned... she's almost as protective as me!)  She's the only pediatric GI doctor at Ochsner, so it takes FOREVER to get in to see her, but when she heard the word "blood," we got in that week.

Dr. Serrano switched him back to the Pedisure (which I had tried before with no problems, but they thought the Peptamen would be easier on his belly).  And she told me if I ever saw any "decent" amount of blood in his stool to take him directly to the ER.  She said with him, blood in his stool could be something to really worry about.  If he has an ulcer in his stomach, like on his skin, it could get so deep that it hits an artery in his tummy and he could bleed A LOT.  Or it could be from something in his intestinal tract.  That's why we need to be careful what we are feeding him... because no one knows how his intestines look, or how well they are working.  And she said she surely does NOT want to take a look "just because" and I agree.

I had started trying "blended foods" for a while.  But I was unsure of exactly how many calories he was getting or if he was getting all the "nutrients" he needed.  By "blended foods" I mean I was blending baby foods with real food, such as bananas, steamed carrots, whole milk, fruit juices, healthy oils.  I read about it here if you want to check it out.  He did well with it and one day I might go back to the blended foods, but right now Tripp hasn't really been gaining much weight.  I don't think he is losing... but he's just staying about the same.  And that worries me a little.  So right now I am going to stick with the Pediasure.  It's higher calorie than the Enfamil we were using before.  And a few times a day, I will give him about an ounce of baby food through his tube in addition to the formula, just for a little extra calories.  Right now he is getting 4 ounces every 3 hours and then 8 ounces by feeding pump at night.  Plus water flushes after feedings.  And he's been tolerating it pretty well.  Other than an occasional belly ache.

We are still trying to feed him by mouth almost every time he eats.  Sometimes he will shake his head (which is really cute, because he shakes his head "yes" instead of "no."  He's still learning :) Then, sometimes he will take about 3-4 bites.  But that's usually it.

As far as his eyes... he still has both contacts in (fingers crossed!) And except for the little piece of skin that is fusing to his eye in the corner (which I have no idea what we are going to do about) his eyes are doing really well... I can't believe I even wrote that.  PLEASE pray that they can stay this way!  They still bother him from time to time, but altogether they are doing okay. We go back in the middle of June to switch them out... And I'm not leaving the eye doctor without 2 contacts in his eyes this time!!! (I know, I sound tough, huh?) I'm getting there.

Little Man has such a mind of his own these days.  He has so many toys that it's almost a sin.. really.  There are two big red buckets full of toys and he will reach for something (and because he can't get around to get it) we will pick something out and hand it to him.  If that's not what he wants, he opens his mouth and makes a crying noise through the trach.  He will throw each toy on the floor until we pick the one he wants.  See? 

Honestly, it's precious.  We will see how long it lasts :)  He is so much fun.  And SO smart.  He listens and watches so intently at everything we say and do.  And he picks up very fast!  He amazes me more and more every day.  He is laughing, clapping, stomping his feet, nodding yes and no, waving by-bye, rolling those eyes, and pretty much trying to do anything we teach him!

Tripp is still getting Occupational therapy right now.  But we are in the process of getting Physical therapy and Speech therapy in too.  He's getting a little stronger, but really needs to be working his leg muscles some more.  (He's getting awfully heavy to lug around).  I'm not saying I want my little baby boy to start walking tomorrow, but we need to get on the ball if I want him walking by the time he is TWO!

SO, we are in the process of glassing-in our front porch so that Tripp can at least remember what "outside" looks like!  He hasn't been outside (other than to and from the car) in over a month, now.  It's really so sad.  He loves it outside and holds his hands up to the door... like "Please take me!!"  So we took the railings down and put up windows.  It's not finished yet.  But we will have an air condition and put in a nice floor, where he can sit with his toys and still see outside.  He used to love to watch the school buses and cars and all the kids playing in the street (that sounds bad, I know... but there are always kids in the street here).  And I can't wait for him to be able to watch all of that again.  Here it is...

I bought him a mini-swimming pool and 100 balls from Wal-Mart last week.  And O my goodness, he loves it.  He's so funny kicking his feet in there.  And he's so funny to watch with the balls.  He only likes the red balls... and occasionally a blue or green.  But not yellow... I don't know why.  And he's learning how to throw them let them go.  AND... he won't hold two balls of the same color.  He looks at them in both hands, and if they are the same color, he drops one and picks up a different color... but not yellow. ha.

A nice woman e-mailed me a few weeks ago and asked if I would video or take pictures of  the "bathtime" process.  I'm still debating.  It would be hard to video because I wouldn't want to "publish" all of the pain and cying in the tub (or his little weenie, for that matter).  But I will think of some way to try and show you what the little man goes through every other day.  My aunt that took the pictures at his party offered to come and take some pictures of bath.  So we will see... I'm working on it.  There's still no way to show you what he "actually" goes through, unless you are here.  So anyone feel free to sign up to be the "3rd person/entertainer" during bath time... haha.

Ok, so that pretty much sums up what we've been up to, I think.  Now for some pictures.

King of the Royal Sonesta.

Tough guys.

"BUT MOM! How do I choose???"

"OK, enough already, Mom!"
Busted, buddy!



  1. What a little smarty pants he is!! And oh so cute, as always.
    I think people are just very curious about how you bathe an EB baby. It's like "So you can't scrub them, you can't rub their skin, they have open wounds, you can't handle them like you would any other baby, and they have a trach that water cannot go down .. how do you do it?!?!". Anyone who ever 'watched' me bathe Leah just kind of watched in amazement.

    Bath times were always different for us .... but Leah almost always loved them - my little water baby

  2. He is SOOOO cute! Makes you just want to go kiss those cheeks. I would love to see what happens at bath time. Maybe just some pictures of the process? You said he cries? Does that mean he has some pretty bad blisters under those wraps? I LOVE your house. Enclosing it was such a great idea!!!!!

  3. I love him rolling his eyes at you!!! That will be perfected by the time he is a teen!!!

  4. Just love all the pictures. Do you think he could use another toy? He really is adorable and I am so glad that he is doing so well.
    Watching Meg give Leah a bath was a joy. Meg had such a routine at bath time. Leah would sort of zone out, a real peaceful look on her face. It was spa time and Leah really enjoyed it. Meg was super and watching her just convinced me more that I have a super wonderful daughter. Take care guys. Give Tripp a kiss for me. Love Leah's Nana

  5. I some how stumbled across your blog, and once I started reading, I couldn't seem to stop. What an incredible journey, what incredible strength and dedication to a little one with so many challenges. May God give you the courage and direction you need. God Speed. Thank you for sharing your story.

  6. Hi Courtney,
    Thanks for all of the latest updates. You sure have had a lot going on. You, your mom, and your sister are all beautiful. You have such a great family and wonderful support system.
    "The little knight" is just adorable. I love looking at the short video's you send and him responding to everything you say. He is one smart little guy.
    The front porch closure looks great. I know Tripp will enjoy being able to feel like he's outside.
    Take care. Ya'll are in my prayers each night.

  7. I've been following along for a little while, came over from Jonah's website. You are an amazing mom (and dad!). I can not imagine the patience that you must have. I remember reading awhile back about the heat coming and Tripp having to stay inside. Seeing that you're now building him and indoor/outdoor room made me cry. He is one special little guy.

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  9. Good work, Tripp! He is an amazing little boy. I feel honored to help care for him.

    Dr. Lisa DeFusco