Grandparents/New Food

Jaime and Jared had a fun-filled weekend with all four of their grandparents. Tom's parents are from Indiana and mine are from Maryland! It was great to see all of them. Thank you all for coming, we are looking forward to your visits for Christmas.

Here are some pics that we took of the kids with their grandparents.

Tom's parents with the boys, AKA Nana & Papa.

My Mom and the boys, AKA Grammy.

Jaime and my dad, AKA Poppy. Jaime has a thing about grabbing hold of faces. Poppy's face was the his favorite to grab. (Hurry back, Dad, Jaime needs some cheeks to pinch! HA!)

Now, as for new food...let's see....Jaime had sweet potato casserole, pureed turkey soup, cranberry sauce (which he LOVED), he had a "taste" of a cheese doodle (anyone in my fam knows what that is) he didn't like it...he will. All MUST LOVE cheese doodles from Aleci's. Mmmmm!!!!


Finally, tonight, he had green beans....loved them!
After he was done eating them, I was cleaning him up, he choked on his spit. He did his usual gagging and trying to throw up...remember last week his SP told me to give him a sucker when he starts to do that...well, tonight, I tried. Sure enough, NO PUKE! WOOHOOOOOOOO!!!!! So, his other new "food" was a sucker! I let him suck it long enough to stop the gagging...I told Tom that we need to take stock in Dum-dums! Actually, today's sucker was a mini tootsie roll one, obviously he didn't get to the tootsie roll!



Jaime is doing well for the most part. He's still having HUGE issues with pooping. Today, he was "pushing" so hard that he gagged himself and then choked on his vomit. I felt so bad for him. That little "episode" wore him out. He napped for nearly 2 hours after that. Poor guy doesn't have much reserve when something like this happens. Unfortunately, it happens daily. Hopefully the "sucker" thing will help. We also increased his Prevacid and added something called Little Tummies to help him poop. These things combined should make for a much happier digestive system! :)

Oh, I almost forgot, another "new feeding thing" is that Jaime drank from a "cup" yesterday. Ann, Jaime's SP in Cincinnati gave us a special cup for Jaime to start drinking from. It's really neat, it has 3 levels of flow. Jaime did very well with it. I'm going to use it every time I feed him in the high chair. It will serve two purposes, 1) it will get him used to drinking with a cup; and 2) the formula in it gives him extra calories!


Last but not least, I weighed Jaime naked this morning...15lbs 2oz! YEA! He's gaining, I think he's growing lengthwise, too. Tomorrow, I'll have to measure him!

I think I've gotten everyone up to date on things here. Tomorrow, Jaime will have SP, PT, and OT, all from Early Intervention. I must admit, I like the therapists from EI much better than the home care ones we normally have. Unfortunately, the EI therapists are only aloud to come once a month! :(
I'll let you know how things go tomorrow...it's going to be a busy day!

Have a nice night!

Thanksgiving & Black Friday

First a GIANT birthday wish from across the miles to our little Nephew, Joshua! He turns 7 today, happy birthday, Joshua, we miss you! Big hugs to you and your sister, too! Love you!

Second, since I didn't do a blog yesterday, a "Happy Holiday Season" to all of our Family and Friends! We love you all and we're so thankful that each and every one of you are in our lives. Your love and support have meant more to us than you will ever know! We'd also like to thank Jared's school and PTO for all of the generosity they have shown for our family throughout this difficult time, it's nice to know there are so many caring people out there!

Our Thanksgiving was really nice. We spent it at HOME as a family of four! :) Tom's mom made dinner for us at our house. Jaime enjoyed Nana's sweet potato casserole, but he gagged on the mashed potatoes that I made...go figure, ha! I froze some sweet potatoes for Jaime to have at a later date. After dinner we made a giant pot of turkey (AKA, Bob) soup. We ate it for lunch today, it was delicious. Later in the evening, my parents, brother and his family came over for dessert..."Grandma's" Jell-O and pumpkin pie. We also enjoyed the cookies (Cookies by Design) that Titi sent us. By the way, she and Kim landed safely in Bangkok late this morning! (Hope you got some rest, oh and good morning.)
Jared and Connor were silly as usual, playing Legos and other toys! Sophia was as quiet as a mouse, and Jaime, well it was one of the first times he's been around so much action, he didn't know what to think. Initially he cried, then fell asleep, after his "cat nap" he was rearing to go! I think all of the kids had fun! I think the adults did, too! It was great seeing everyone!

As for Black Friday, well, I sure as heck didn't go shopping. Jared spent the night at my in-law's hotel, so they went to Target early this morning...only to get Jared a Lego set...spoiled little boy! HA! Then, they came to our house. They were here for lunch, then Jaime's speech therapist, Marcia called, so they took Jared back to the hotel to go swimming. Marcia fed Jaime Nana's sweet potatoes. He did really good until she gave him too big of a bite, then he gagged and threw up. UGH! She said to try giving Jaime a "Dum-dum" sucker when he starts to gag to see if he can control his gag reflex....never heard of that before. She's got all kinds of crazy ideas! She also told me to try giving Jaime Cream of Wheat for breakfast, but mix it with formula, we'll see how that goes. Anyway, we weighed Jaime when she was here, he was 15lbs, 5oz...with clothing and a diaper. So, again, while this is not a true weight, we can tell that he is gaining weight. YEA! After she left, we met up with Jared and my in-laws and ate dinner. After dinner, Jared and Nana built a windmill generator that really worked, too. (Pics will be on Jared's World.) Once that was built, Jared and I went back to the hotel to swim! We swam until we were tired. When we got home, we found Jaime asleep in Tom's arms. All is well! :)

Here is a slideshow of the pictures that we took yesterday and today! Enjoy!

Hope you all enjoyed your Turkey day, have a great weekend!

Busy, Busy

First, we'd like to Welcome Home, our Cincy CDH Buddy, Carter Trace Adler! Carter was discharged, after 211 days in the NICU on Monday! We are so happy for Carrie and Jeremy. It's been a very long, tough, winding road, but they are finally home together as a family of 3 (4 counting their pup, Jackson), just in time to celebrate their first family holiday together! Welcome home, little guy (and Carrie, too-the Adler's relocated to Kentucky from Indiana for Carter to be cared for at Cincy Children's)! Don't give Mommy and Daddy, too much trouble, Carter! ;) Can't wait for the boys to officially meet on the "outside." Happy Holidays, Adler Family! :)

Jaime on the way to the drs. His first "outing" since he was discharged from the NICU...again.

We've been very busy the last few days. Monday, I spent the day trying to clean and organize my house. It's hard being away for so long and since Jared was at school, I figured I'd try to get a few things done. Then, on Tuesday, Jaime went to see Dr. Hellerstein.
Jaime is 14lbs 13oz...just as he was on our home scale, that means he did indeed gain 7oz since being home. Dr. Hellerstein seemed pleased with that, but she has also requested weekly weight checks since the NG is still out. She wants to make sure he's continuously gaining and not plateauing. Since Marcia (SP) will be working with Jaime's feeds, she will be the one weighing him and we will have to go in to Dr. Hellerstein's office every other week.
Speaking of feeds...Jaime is drinking his bottles great, but he's not eating very well these days. We're not sure why. However, we have a hunch that his reflux is a huge issue these days. It's much worse than it was after the first surgery, plus his gag reflex is very strong. He'll cough, gag himself and throw up. Or, he'll put his fingers or teether a little too far in his mouth...same thing happens. It's very strange. I'm hoping Marcia can assist us with this issue. We called Cincy and they upped his Prevacid dose, so we're helping that, too will help!
Other than those things, Jaime's doing very well. After his appointment yesterday, we stopped by Auntie Edel's house. Edel lives on the same street as Dr. Hellerstein's office. She was very happy to see Jaime and I, likewise! She made Jaime an adorable sweater outfit for Christmas.


Since we were out...I thought I would stop by to visit my Grandma, too. With me being in Cincinnati and her being in the hospital, it's been a very long time since we've seen each other. She tried really hard to enjoy visiting with us, though I know she was very tired and not feeling well. (It's not the best picture, but it's the only one we've got, my Grandma's nurse took it.) Please keep her in your prayers! Thanks!

After that visit, we were home again. That was a huge outing, we NEVER take Jaime out like that, but how could I not visit with Edel and my Grandma? Jaime has literally been in the house since we've been back from Cincy until Tuesday. Tom and I take turns running errands or taking Jared places. Tonight, Nana and I took Jared to his swim lessons. Here's a funny photo of Jared at the pool tonight.

One new thing that happened tonight is that Jaime has FINALLY moved into a big boy crib. I suppose at 7 1/2 months old, it was time to put Jared's old crib up. Not to mention that little stinker would "scooch" himself down in the bassinet and flop his feet up over the edge so that I could tickle them. Here are some pics of one little boy in one big bed!

Looking at his (Jared's old) "fish tank."

10 minutes later....

As for the Thanksgiving holiday, both mine and Tom's parents came to Cleveland. We'll be having dinner with Tom's parents and then my parents, brother and his family will be coming for dessert tomorrow evening. Titi will be leaving for Thailand tomorrow! Bon Voyage, Titi wishing you and Kim a safe, fun filled, relaxing trip, we'll miss ya...bring us back something neat! ;-)

Here is a picture of what I'm thankful for (taken just this evening)!!! :)

Happy Thanksgiving, everyone! Thank you all for your continued support, love and prayers!
(Gobble, Gobble)

Experiment

So, I did a little feeding experiment today...I noticed that Jaime is more apt to drink his bottles and finish them if they are warm. I gave him a very warm bottle last night before midnight, he sucked it down, didn't even take his usual breaks. When he woke up this morning, I gave him a "cool" bottle...he didn't want it, he took many breaks...that is until I made it warmer. Sure enough, he sucked it down. I did the same thing with his food...ate it all up when it was warm, but wasn't too interested when it was room temperature. Now, I'm wondering if that is why he drank so crappy in the hospital, we never could get those bottles warm enough no matter how hard we tried.
Tom went to urgent care this morning...at his own will, so you know he felt really lousy. They did a throat culture, yep, Tom has strep, had it this whole time. Part of me is soooooo relieved that it's not the swine flu! He's on an antibiotic, he's had a full day of them and by this evening, he's actually feeling a bit better. Strep responds so quickly to antibiotics. He's hoping that by morning, he'll be in good shape for school, at least we all know he won't be contagious because he'll be on antibiotics for over 24 hours (he went to urgent care REALLY early)! Oh and for the record, Jared was feeling much better today, too! Don't know what he had, but it came and went quickly, thank goodness!
Anyway, back to Jaime...while Tom was at Walgreens waiting for his prescriptions, I asked him to pick up one of those water filters for the faucet. I figure instead of making a pitcher of formula and refrigerating it, I will make every bottle individually, this way they will always be warm (and with purified water, too). Jaime drank 100% of his bottles, and ate peas (didn't love them today), oatmeal and pears. He only spit up once after a burp...it was normal baby spit up. :)
Oh and I weighed Jaime naked today, he was 14lbs 13 oz. So, he has gained 6 ounces since we've been home at least according to my scale. Jaime sees Dr. Hellerstein on Tuesday. I can't wait for her to see him, he's such a different boy than the last time she saw him. She actually called me before we were discharged on Wednesday. She was in Kansas on a family vacation and was thinking of us. I thought that was too funny!
Well, I'm off to put Jaime in his bed, he's currently "stirring" on his boppy.
Enjoy the pics and have a nice night!

Jaime was trying to put his leg up like Jared, this went on for a half an hour this morning, it was hilarious. Both boys were laughing, Jaime couldn't do it!

Jaime's new teether?!?

Jaime playing with his toys while Jared and I played Legos.

Show us your tummy! (Jared and I taught Jaime this trick)

Two bathed boys ready for bed! Nighty, Night!

Sick Boys/First Sitter

Tom is still sick, in fact I haven't seen him all weekend...remember he's quarantined in the basement? Well, I think that Mr. Jared should have joined him. Jared started throwing up at 11:30 P.M last night and it lasted until after 3:30 A.M...at which time Jaime woke up for his bottle! Yep, you guessed it, no sleep for Mommy!
Jared woke up just before 7:00 A.M. because Jaime was up having another bottle and said it was too early and he went back to bed...wish Jaime would have done the same! Instead we came downstairs and hung out. Jared came down around 9-ish. He wanted to eat, but I just gave him water. I did, however, give Jaime a bowl of baby oatmeal cereal in which he LOVED!
Shortly after that, I called Dale to see if he could watch Jaime while I went to the grocery store to pick up some "sick" food for the boys. He agreed to keep Jaime...it was the first time I ever left Jaime with someone! Jaime was fine, took a bottle over there and fell asleep on "Uncle" Dale by his warm fireplace.

I went to Heinens, since it's just up the hill from Dale's house. I haven't been there in ages! There's something to be said for a grocery store who bags your groceries AND puts them in your car! Now THAT'S service! :)
Anyway, I got back to the house, Jared was still in the position I left him in, lying on the floor with his water watching Disney, Tom was still in the basement. Jared had some Sierra Mist and crackers, he kept it down, so a bit later, he had some soup. He kept everything down that he ate during the day. I washed all of his bedding and clothes from last night and I'm hoping he doesn't have a night like last night.
As for Jaime, he's still OK. He did throw up today, but it was just a little bit and after he was coughing. He had sweet peas for the first time, wasn't sure if he liked them or not, but he sure had fun "playing" with them.






By this evening, Jared was feeling a bit better and wanted to "play" with Jaime. I made him wear a mask and Purell his hands. Here are some funny pics of them.






Here are some funny pics of Jaime matching his swing! Love these thermals!


Oh, before I go, Jared wanted me to tell "everyone" about HIS new blog..."Jared's World." http://jaredtrost.blogspot.com/ He wanted a blog, too. What better thing to do with my sick little guy, than make one up for him. HA! Check it out, there's also a link to it on the side of Jaime's blog. Wonder what he'll add to it next!

Enjoy the pics and have a nice weekend!

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....