Year End Review....

I won't go through all of the gory details of this year, we all know what they were, I'll just say that we've been through more this year than any one person should have to go through in a lifetime. And when I say "we" I mean all four of us! Jaime has been such a trooper and to still smile in the midst of all of this just amazes me! Jared has had his issues dealing with all of this and I'm hoping that we're finally on the "up" with him...and Tom and I, well, we've just sort of rolled with the punches! We were talking about this year earlier today, we know that many people doubted us didn’t agree with our decision, but honestly, we have absolutely no regrets for making the decision to relocate down to Cincinnati to give Jaime a chance at life...and a good one at that! He is no doubt a lot of work, but so worth every minute!
This whole experience has changed me a lot. I've learned what it's like to appreciate the little things in life; I've also learned to expect nothing. My advice to those expecting CDH babies or sitting in the NICU with one right now would be those two things! Embrace the really good moments and expect nothing in return, this way when the roller coaster goes down...and it will, you are not disappointed! You will know that you've chosen the best medical team to care for your little one and there's nothing more you, as a parent can do except sit by your baby's side and hold their hand! “Expect nothing” is the motto I’ve lived by throughout this whole year! That’s my secret to always being positive…OK that and seeing my little boy smile everyday! (Thank you to God and the CDH Team in Cincinnati for that!) ;)

I've also learned to give up control, I can't control anyone or anything except my own actions, therefore, I've stopped trying...don't know if this is a good thing or a bad thing, but nonetheless, it's another lesson learned. I've learned not to let pettiness get me down, there are much greater things to occupy my mind and time with! I've learned to be a bit selfish and to stick up for my boys, no matter what the cost! I've also learned how to start an IV and place an NG! Two things mothers should NEVER have to learn how to do.
And I think I can speak for Tom when I say that we've both learned what it's like to be part of an awesome, caring community. To think that we were "Welcomed Home" from our 4 1/2 months in Cincinnati to THREE fundraisers for our family, how amazing is that? Not to mention all of the countless number of people (family, friends and strangers) who made a point to brighten our holidays and make them special for both of our boys. Thank you!

We’d like to dedicate this post to our CDH Family; I honestly don’t know what we would have done without all of you. It’s your constant words of inspiration that have kept us going this year. I love knowing that we’re not alone in this crazy journey through CDH World. Our family and friends have been very supportive, but they don’t know, nor can truly appreciate the exhausting roller coaster that we have been on this past year. It’s one thing to be a third person looking in and another to have physically and emotionally gone through it. Again, we will forever be thankful for each and every one of you, especially to The Adler’s-whom we met online nearly a year ago and spent countless hours/days/weeks/months with in the NICU, as Carter began the fight of his life 11 days after Jaime was born; to The Luken’s and The Toney’s for stepping up and embracing our family as part of their own-you will forever be our “Family in Cincy;” and to Breath of Hope and Cherubs for connecting us with many of you! (Thank you, Elizabeth and Dawn!) You and all of your children will always hold a special place in our hearts!

Thank you all for continuing to show your love and support for our family and for checking in on our blog and leaving comments daily! Wishing you all a happy and most importantly a HEALTHY new year! Here’s to 2010!

365 Days Ago....

One year ago today, we would learn of an acronym that would change our lives forever...RCDH!
R=Right-sided
C=Congenital
D=Diaphragmatic
H=Hernia
One year ago, we shed many tears and asked "WHAT? WHY? HOW?"
One year ago, we were told that we should end our pregnancy...one year ago, I believed that, too! One year ago would be the start of us having sleepless nights worrying. One year ago we spent many hours planning our baby's death (we were set on donating his body to science). One year ago we found Breath of Hope, an organization that would give us hope! One year ago today we became part of an amazing community of CDH families!
And so the CDH roller coaster began!
Thinking back to December 30th, 2008 seems so surreal. I can remember every single detail about that day from start to finish, even what we were wearing and what we ate (as it was the last meal I had for days)! I can literally go on and on about December 30th...it will forever be the dreaded diagnosis day...much like December 24th, 2006 when Jared was diagnosed with hemophilia. Seems kind of funny to think that prior to Dec. 30th, our biggest worry was whether or not Jaime would have hemophilia. Hemophilia is NOTHING compared to the CDH Roller Coaster!
So now that I've reflected on what this day means to me, let's take a quick look back at Jaime's journey.

Jaime Albert Trost, December 30th, 2008, 19 weeks gestation, diagnosed with RCDH. Notice the big dark line on the right side? That's Jaime's diaphragmatic hernia. (Later we learn that it's not just a hole in his diaphragm, it's the area where his diaphragm does not exist at all.)

After two amniotic fluid reductions, (both causing pre-term labor), and at 34 weeks gestation, Jaime was born with RCDH and hemophilia via emergency c-section at 3:58 A.M. on Thursday, April 16th, 2009 at Good Samaritan Hospital in Cincinnati, Ohio. He was immediately resuscitated at birth and transferred to the RCNIC at Cincinnati Children's Hospital to be cared for by the CDH Team there. At 23 days old, Jaime had his first repair surgery (liver and bowels up). At 41 days old, he was extubated and we heard him cry for the very first time. He was discharged from the NICU (the first time) at 93 days old with O2 and a feeding tube! He spent 2 1/2 months at home, with trips back and forth to Cincy. In September he was in and out of Rainbow Babies and Children Hospital with respiratory distress and vomiting and diarrhea. Turns out that he had reherniated and Jaime was back down in Cincy admitted to the RCNIC. He had a second repair surgery at 194 days old (liver, bowels and kidney up) and was discharged at 217 days old. Since then, he's been working on feeding and developmental issues, all the while with a smile!

Jaime today at 8 1/2 months old playing with a few of his new things.

Jaime eating a biter cookie. Mmmmm!

Happy, lovable little boy, who doesn't know that the doctors once told us that he had a 20% chance of survival and that we should terminate our pregnancy, thus end his life...he's showing them, huh?!? His roller coaster isn't over yet, he still has a lot to over come, but nonetheless, we're so proud of our little CDH Warrior for coming as far as he has to date!!! We just love this little boy! :)

Appointment News...

First of all, let me start off by saying that we don't have to go back to Cincy until Jaime's one! Woohoo! OK, this seems really far off, but really it's 3 1/2 months away.
Now for stats: Jaime is 15lbs 8oz, just like he was on his home scale. He's just about 26 1/2 inches long. He's still sitting at 3% for height and weight for his adjusted age. Dr. Haberman said that we really need to see some significant growth in the next 3 to 4 months. She has added Beneprotein to his diet, in hopes that this helps. She said it doesn't always work for kids, but it's worth a shot. Plus, he is not restricted to any particular foods at this point, so we're aloud to try anything, as long as he tolerates it!
Cognitively, he's right on target for an 8 1/2 month old, perhaps a little above, however, his gross motor skills, not so much! In fact, he is much further behind then they would have thought he'd be, even accounting for his adjusted age and his 2 surgeries. The longest part of our appointment was therapy. Ann (SP) and Amy (OT) worked with Jaime for a long time. Jaime ate a graham cracker and did awesome with it. Tom and I were surprised because textures really freak him out, but he did well. We're thinking that using the food net so much lately is helping. I can't wait to get home and buy him baby puffs to try! Those will also allow for him to work on his fine motor skills...as he will have to pinch his fingers to pick them up.
Getting back to his gross motor skills and torticollis, all of which he is so far behind. I told the girls that I am less than thrilled with my home therapists, they are going to write a treatment plan for us to follow and try to find us new therapists in town. (We'll let them be the bad guys.) I know that Jaime is behind and I do work with him on stuff that the Early Intervention therapists show me, but there is only so much that I can do without assistance. I find our "normal" therapists to be lazy...clearly Jaime hasn't come very far with their assistance, in fact, as Ann pointed out, seems like Jaime may have regressed a bit since his last NICU admit. I tend to agree with her. It's so frustrating! We'll get him fixed up, though!
Another thing the girls noticed, which was talked about during his last NICU stay was how much energy Jaime uses during therapy. If on a monitor, we probably would have seen him start to desat because his eyes were tearing and starting to get blue circles around them. Dr. Haberman suggested putting him on O2 for therapy and anytime he's going to do something that will exert him (tummy time, sitting...). She said it won't hurt him and it may even help him grow if he doesn't have to expend the energy to breathe.
Jaime does play well side-lined. Which is something that was suggested to us. This way his cognitive, social and fine motor skills will continue to develop properly. The gross motor skills will take a while. I mentioned yesterday that Jaime will not put weight on his left foot, well, he was checked, nothing obvious appears to be wrong. He, once again, has everyone puzzled...way to go, Jaime! HA! We're going to watch it and do some joint stretches, as I was shown today, we'll see if that helps, if not, we'll investigate further. The way he "holds" his leg up indicates that there may be something wrong, but as I said, we're going to see if stretching it works.
Now on to the big-little thing, really, his incision. His x-ray indicated that his liver is elevated, but from what we were told today, the right diaphragm will ALWAYS be elevated, so the liver will never quite be in the right spot. Dr. Tiao came to see Jaime....frazzled, as usual, he said if something is wrong, we're getting a new surgeon! HA! Anyway, he felt around for a while, it is not 100% clear if he has an incisional hernia or if it's just weakened muscle. There is one area that may indicate an incisional hernia. The only true test would be a CT scan, in which Dr. Tiao isn't crazy about doing at this time. He wants to give the diaphragm some time to "work" and "grow" before opening Jaime up again. This is something that will happen down the road...1 to 3 years, unless there's a problem, of course, in which case Dr. Tiao will have us transferred down to Cincy right away.
So, that sums up our visit to Cincy. Nothing too shocking, we're just disappointed about Jaime's development more than anything. In due time, I suppose!
We are currently heading into downtown Columbus to visit with Titi for a bit before heading to snowy Cleveland!

Here are some pictures from the last 24 hours.

Love that Jaime is holding the elephant's trunk!

Jared and his game.

Lounging in the hotel room.

Jared and I went swimming this morning.

Jaime asleep after playing with his new blocks from Jeanie (Ryan's-LCDH Mom) Thanks, Jeanie it was nice to see you a few minutes, next time you guys need to come North!

Have a nice night, all!

Cincy Again....

The boys in the car on our way down here!

After a crazy, L-O-N-G, treacherous drive, we made it safe and sound to Cincinnati. We stopped at the hospital before the hotel to get Jaime his chest x-ray that his surgeon ordered this morning...I received a call at home about it. They wanted it done before our 12:20 P.M. appointment, since we got into Cincy around 8:00 P.M. ish, I thought it was best to do it tonight. I knew there wouldn't be a wait...and I was right! Not to mention an empty waiting room...no extra germs floating around at that hour. We were in and out in no time!
Then, we headed to our hotel in Kentucky. It took a while to get everything in, Jaime "comes with" (as Jared says) lots of equipment, you know aside from the "normal" baby stuff. Once settled, we took a tour around the hotel, checked out the pool, had a snack and got ready for bed. The boys are all sleeping, I'm heading that way really soon.
Since we don't have to check out until noon, Jared and I are planning on swimming in the morning. It was just way too late to swim tonight, though the pool is open until midnight. Hmmm, perhaps, I'll take a dip in the hot tub tonight...just kidding, I'm soooo tired!
We didn't get on the road until 1:45 today, our rental wasn't ready when it was supposed to be. We rented a mini van to come down simply because it's easier with all of us and Jaime's equipment, especially his large O2 tanks. This is the second or third time we've done that, works out so much better, plus we don't put the extra wear and tear and mileage on our cars.
Anyway, we're looking forward to our appointment tomorrow...I hope Dr. Haberman is happy with Jaime's weight gain...we sure are! Now, we'll just have to figure out what the new plan will be for Jaime's incisional hernia. We've also noticed that Jaime is still not weight-barring on his left leg, so we need to ask about that. Before his last surgery, he didn't move his right side, now he moves BOTH sides, but will not put any weight on that left foot, it's very strange. We're hoping to shed some light on that while we're down here, too.
That's about all from Cincy, Jaime's fussing again-see the boy never sleeps for any extended period of time! Just basically wanted everyone to know that we are safe after traveling in the snow!
I'll update again tomorrow once we know more....

Jaime's First Christmas

We've been VERY busy with holiday festivities, a GREAT time was had by all.
Titi, Grammy, Poppy, Nana and Papa all came to town to join us for Christmas. Titi, Jared and I finished the cookies early Christmas Eve. However, that morning, I dropped my camera in my sister's coffee. ARGH! If that wasn't crazy enough, when I went to vacuum up the sprinkles from our cookie decorating...my vacuum motor went. Another ARGH! Santa ran to get a new one, as that was more of a necessity than having a camera...at least at that moment. That night, we ate some soup, then Tom played in church. The boys and I went to my brother's house to exchange gifts! The kids had a blast with each other.
Christmas morning started off VERY EARLY, as Jaime's O2 alarm was going on and off. Why you ask? Not because something was wrong with Jaime, it was because the power had gone out. Jaime's monitor has battery back up, so that was just fine, though he did desat into the 80's while asleep, that is until I got him on an O2 tank. We had a big rain and wind storm on Christmas which led to the power outage (we missed having a white Christmas). It was off for a few hours. It finally came back on just before 9:00 A.M. Trying to stop a 6 year old from opening presents because it was pitch black was not fun! Once on, Jared went crazy opening his and Jaime's gifts!
In spite of everything, we had a wonderful Christmas. The boys got soooooo many new things to wear and play with. I can not believe how much stuff they got this year! It was so great to have Jaime healthy and home! He seemed to have lots of fun with his presents and the family. He's still a Mama's boy, especially in a large group. Though, by the end of this weekend, seems like Titi's growing on him, she's been staying with us since before Christmas.
Jaime has been eating AWESOME these last few days! In fact, today's weight is 15lbs 8oz! I'm so proud of my little man! He LOVES his food net. These are all of the things he's eaten in it over the last few days: grapes, pineapples, waffles (with and without syrup), crackers, carrots, green beans, and potatoes. I also received a baby "Food Mill." This is a little tool to create baby food with your dinner food. I pureed: green beans, carrots, potatoes, spaghetti squash and sweet potatoes with it. The other neat "feeding tool" I got was a Boone Spoon. You put the puree in it and squeeze it out onto the attached spoon...it's one hand feeding. It works great! I highly recommend it.
As for the day after Christmas, well, we didn't do anything, just hung out at home playing with the boys and we ate leftovers all day. Then, today, Titi and I spent the afternoon at the nursing home with my Grandma. We played the game of "LIFE" and Grandma, of course, won! HA! It was fun! When we left there, it was snowing and the roads were terrible. We slid a bit coming home. It's still snowing, we have a few inches already. Now, the problem with that is we are due to drive to Cincinnati tomorrow. If it's still bad out, we may just cancel our trip. See, this is the problem being sooooo far away from the hospital. Jaime doesn't have any pressing need to go there, we know that he has an incisional hernia, but there's nothing they're going to do about it now, he's stable. So, waiting for better weather might be an option. Of course, it IS winter, and the weather is so unpredictable, it's hard to really decide what the right thing to do is. We'll see! We're going to make a decision at noon tomorrow!
Before I go, I'd like to thank all of our parents for visiting and for the wonderful gifts for all of us! I'd like to thank my siblings, too for their gifts and company! And final thank yous to our extended family, friends and strangers who helped make this Christmas one to remember! We appreciate everything that you have done for us! This really was a Christmas to remember for so many reasons! THANK YOU!
Here's to a happy, HEALTHY 2010 for all! We love you!
Here is a glimpse of our first Christmas with Jaime! Enjoy the slide show!

ER Visit

Jared and I went to The Smith's house for lunch today to exchange Christmas gifts. We had a really fun time. I took a few photos, I was laughing because I didn't get a single one of Jared. Oops! HA!
Here are pics of the kids with their presents...you know, except for Jared. All of the kids really enjoyed their presents, thanks Colleen. We are just mostly excited to have Jared's Bakugan's organized in his fancy rack from you guys!

Lauren in her Fancy Nancy dress.

Connor reading his Lego Star Wars book.

Jaime with his "Jaime" (spelled correctly-J-A-I-M-E) bag. Everyone seems to spell Jaime wrong, Colleen said she was going to tease me and have it spelled wrong...thanks for spelling it right, girlie!

After Colleen's, Ellen (PT) came. I told her to look at Jaime's incision site. She felt that he was guarding it more and was definitely less active today. She gave him an "easy" day, (personally, I think they are all easy). She was concerned and wanted me to call the dr. Well, I did and scheduled an appointment for tomorrow. After she left, Dale (RN) came over. I asked him to peek at Jaime's site and listen to him. He said his lungs sounded great, but was concerned with his behavior and and the fact that the "bulge" was bigger. He thought that maybe we should go to the ER for an x-ray, rather than waiting for tomorrow. So, we did. He took Jared for us and off we went to Hillcrest Pediatric ER. (For those of you not familiar with Cleveland, Hillcrest is a local Cleveland Clinic Hospital.) I have University Hospital insurance, but as we all know, you can go to any ER. This was the ER that CORRECTLY diagnosed Jaime's re-herniation and Jared's hemophilia. We have a lot of faith in them, plus I used to work there and know everyone.
Anyway, they took Jaime back right away and assessed him. They all agreed that he needed an x-ray. I brought his older x-rays with me for them to compare. So, I'm not entirely crazy, Jaime does have an issue with the incision site...it's called an "incisional hernia." His diaphragm is not re-herniated, thank God, but his incision closure (fascia) most likely is. He does have a bulge on the right side again and when he pushes up, you can almost see his bowel loops like before when his fascia wasn't closed. I'm sure, once he gets wind of this, Dr. Tiao, Jaime's surgeon, will have a heart attack (after all, he did say it was a tight closure and he almost didn't do it, but thought he would try anyway.) This will need to be surgically repaired, but it is not an emergent surgery. We are due back in Cincy on Tuesday and will be seeing Dr. Tiao as well. We will know more then as to how and when he thinks this should be repaired. We did hear that it's a fairly easy repair....of course, this is Jaime and we all know nothing is "easy" with him, especially with the hemophilia...that complicates everything!

Tom holding Jaime after his x-ray that he laid so incredibly still for. The tech couldn't believe how good he was...it's sad really because he's had so many, and at 8 mos. he already knows what to do, arms up, lay still! I didn't even have to hold him, nor did we strap him down! You can just barely see the bulge on the right side at the bottom of his ribs, Tom's arm is in the way.

Not to end this on a bad note, Jaime was obviously weighed today and I am pleased to say that he is 15lbs, 6oz! Jaime has officially gained 1 whole pound since his second NICU discharge 1 month and 4 days ago. We credit all of that to his formula change! I hope that the drs. in Cincy are just as excited about this as we are.
Well, that's about all...not horrible news, not great news, just another bump in the road and surgery in our future! Could be worse!

Hope everyone is ready for Santa! We sure are here! Safe travels to all of the out-of-towners, especially, Titi, Poppy, Grammy, Nana and Papa! :) See you all REALLY soon!

Formula...

So, we've officially switched Jaime's formula with the feeding company last week. Having said that, I have 4 CASES of Similac Isomil Advance Powder with Iron...need any? Since it was all delivered prior to Jaime's last NICU stay, we can no longer send it back to the supplier, it's sitting, still boxed in my guest room, please let me know if any of you need it...you can contact me via email sltrost@yahoo.com.
Hope somebody can use it!

Not much to tell today. Marcia (SP) came to work with Jaime. As usual, she didn't do a whole lot. She did give me a few pointers on how to trick Jaime into eating different textures, though. I didn't do it today, but will try it in the future. She said that after the holidays and our Cincy visit, we are going to be aggressive with feeding Jaime. (Textures, tastes...etc.)
Today, Jaime tried apple/mango puree (organic, of course), he LOVED it! I even tried something new...I gave him a bowl of oatmeal mixed with apple/mango puree and formula just before bed...I'm hoping this allows him to sleep through the night. He actually has been sleeping better the last two nights, but I also gave him Tylenol before bed because of his poor, swollen gums. None, tonight, though, just some cereal followed by 2 1/2 oz of formula. Oooooo, speaking of formula, that little stinker drank 5 1/2 ounces in ONE sitting! :) Wooohoooooo! I made a 6oz bottle just for "fun" he showed us, nearly drank the whole thing!
His incision site still looks puffy to me, but I'm wondering if it's because of how well he's eating these days?!? He's growing and I'm thinking that's got to change things. I wish he hadn't re-herniated in the first place, then I wouldn't be so worried about it! 7 days until Cincy! Speaking of, for our Cincy friends, we will be staying in KY on Monday night...we'll be there just the one night (barring any unforeseen medical issues), then back to Cleveland. It's a shame that we don't live closer, can't really do this trip in one day, it always requires an overnight stay somewhere! Fortunately, my brother hooked us up at an Embassy Suite hotel with his "family" discount! Way to come through, Scott, thanks!!!!! :)
That's about all for tonight, like I said, pretty boring here today! Sometimes in CDH World, boring is GOOD!

The boys watching Jared's new "Flying Things" DVD from Aunt Elaine & Aunt Phyllis this afternoon.
I think it just gave Jaime a distraction while doing "therapy." Way to get high up on your arms, Little Man!

Happy last minute holiday shopping/baking/cooking/cleaning/traveling etc....

Great People!

I just realized that it's been 4 days since I've posted...WOW, time flies! We've been pretty busy around here. We're getting ready (and excited) to spend our first Christmas HOME together as a family of FOUR! :) We had our first "real" snowfall this weekend. I don't think Jaime knows what to make of it. He's doing well. He's 15lbs 5oz. as of today's weigh in. He's teething and a bit out of sorts lately from that. I swear his incision site looks a bit puffy to me, but he's stable, so we'll wait to see what Cincy says next week. We are due there on Dec. 29th. (Fingers crossed that it's just me being paranoid!) Other than that, not too much to tell, he's still tolerating his formula well and he's only thrown up twice in 10 days, both time provoked by a thumb being too far in his mouth...silly boy, gagged himself. He's eating more "solids." Although, we are discovering that Jaime gets a rash when he eats non-organic foods...not sure what that's all about, but for now, it's "organic" only for Mr. Jaime.
As for the rest of us...I spend my days taking care of Jaime and I have been looking for a part-time job, too. Crazy, I know, but COBRA is really expensive. Jaime was recently approved for home nursing, so we'll be able to have a nurse here caring for Jaime, if and when I go back to work. Also, the nurses taking care of Jaime will only be friends of mine. I am allowed to "hire" whomever I want as long as the appropriate paperwork is completed, so that's pretty neat! I'm also going to attempt to take classes again in January!
Jared and I baked cookies this weekend. He's thrilled to be having some much needed time away from school. I'm hoping to get him out on the ice with me sometime during his break.
As for Tom, he has spent the last week finishing up his school concerts. We'd like to thank all of Tom's students, parents, and schools for the wonderful cards, gifts and over all good wishes for our family. We appreciate all of the support that you have given us throughout the year.
Speaking of gifts, my children have been SOOOOOO spoiled by our friends and family. We'd like to thank Aunt Phyllis and Aunt Elaine for the packages that came this week. Jared is so silly and insisted that he open them...so, I let him...what GREAT gifts! BOTH boys have thoroughly enjoyed them. Jared will be taking all of his on our trip to Cincinnati next week.
Then, on Friday, the boys received Christmas gifts from the Wickliffe Secret Santa (ABB, I&A Women's Club...etc) thank you all for making this Christmas so special for our boys!
Uncle Dale also came over with packages for the boys...he let Jared have one of his presents early...a Lego car set. The others are still under the tree. Thanks, Dale.
Next, on Saturday, we found a package on our door step in the snow...it was from the Kozik Family. Emily, like Jaime, was born in Cincinnati with CDH. Thank you, Sue for the awesome gifts for the boys...oh and the shoes were PERFECT! He'll be able to wear BOTH pairs! :)
This morning, Jaime and I had the pleasure of going to church to hear Jared sing (and Tom play piano). The kids were TERRIFIC! And they looked super cute in their collars, too. It was nice to see everyone! Even at church, Jared and Jaime came home with little gifts...special ornaments for the tree and candy canes! Thank you, Ann! You guys did a fantastic job with the performance today!
Just when we thought the spoiling was over, Tanya (from our Abby Normal Family) came with gifts for the boys...Legos and Play Doh for Jared and Elmo for Jaime! Thanks soooo much! It was great visiting with you...hope you liked the cookies! :)
So, I entitled this post, "GREAT PEOPLE" because we are truly surrounded by them! This has been the absolute hardest year of our lives (thus far) and we couldn't have gotten through it without our wonderful family and friends! I know I have said this a million times, but you will never know what your love and support means to us...not to mention the very many prayers that have come and are continuing to come our way! Thank you all for EVERYTHING, wishing you a happy and safe holiday season!
Much love to all!
Enjoy the slides show of the boys from this past weekend.

8 Months Old!

Happy 8 Month Birthday, Jaime, from the BEST big Brother ever and your Mommy and Daddy! We love you, little guy! :-)

Jaime and I hung out at home all day, we didn't even have any home care visitors over! I did his therapy with him and then let him play. He played with some of his favorite toys while sporting Jared's old jeans! HA! (Beth, your caterpillar ball is a HUGE hit in our house, thanks again for it!)

Jaime ate like a little piggy today! He drank 31oz of formula-3 bottles with cereal, had Nana's sweet potato casserole for lunch (I froze some cubes for Jaime after Thanksgiving dinner), he ate a mashed baked yam for dinner and finished his day off with vanilla bean ice cream in celebration of his 8 month birthday.

Here Jaime is enjoying his special treat!

I weighed Jaime just before his bath tonight, he's 15lbs 3 oz! :) I'm very happy with his weight gain and appetite. I hope this trend continues! Also, I forgot to mention this in my last post, while Jaime is still a crummy night time sleeper (though he's getting better, he'll sleep 5 solid hours), he's starting to take 1 to 2 hour naps in the late afternoon. I usually end up putting him down just before Jared gets off of the bus. This way, we have special time with Jared and we can make dinner, too. Now it doesn't always work out like this, but like I said, he's getting better. :)

As a side note, rumor has it that Titi is coming back to the States tomorrow, she's currently in the air traveling to Chicago from Tokyo. Safe travels Titi and Kim. See you soon to make Christmas cookies...I've got a list of cookie ideas started and I even found some Christmas sprinkles...mmmmm!

Jaime just went to bed, so I'm going to get my pjs on and head to bed, too. We all know that Jaime will be up around 2:00 A.M. (YAWN)

Good night, folks!


P.S. Don't forget to check out "Jared's World," exciting news to share! :)

More Happy Birthdays....

Happy BIG 6-0 to my mom, AKA, Grammy, I heard that 60 is the new 40, what do ya think?!?! :) Also, a happy 22nd birthday to CDH SURVIVOR, Ryan Toney! :) Ryan, you have been the inspiration that has kept us going throughout this journey! Thank you! And finally, Jared reminded me that today is his "half" birthday, so Happy 6 1/2 birthday, little man! :)

Now a quick update on Jaime.
His 8 month stats....
Height: 26 Inches 24% for adjusted age
Weight: 15lbs 2oz 7% for adjusted age
Head Circumference: 17 1/2 inches 62% for adjusted age :)
BMI: 15.7 (don't ask me why they figured this out, but they did) 3% for adjusted age
Formula: Good Start, milk based! He's tolerating it well. Another day, no vomiting! :) (and he's pooping "normal" without medication assistance, too! YEA!)
Jaime, like a naughty little boy, pulled out his NG this evening. We haven't used it much, but we will probably put it back in. Get this though, Jaime was drinking 5oz bottles some with cereal in addition to eating baby food today. Tonight, at dinner, he ate more than half of a Gerber stage 2 Sweet potato/apple sauce. (That was the flavor, in one container.) I added some oatmeal and cinnamon...down it went with smiles all the way! :) I'm soooo happy we've been having some "good" feeding days! It's about time! Honestly, I think his tummy is feeling better over all from the formula change and it's making him want to eat more.
Activity: Jaime is rolling to both sides all of the time. Sometimes he's able to roll all of the way over, back to front, front to back. He's also tolerating more time on his tummy...even swivels himself around in a circle and lunges forward. He also gives high fives! Jaime tries really hard to mimic Jared, too! It's so cute to watch him. Jaime is actually getting good at mimicking all of us. If you say "pat, pat, pat" he'll pat you 3 times. He likes to play "Boom-Bah," too, probably a little too much because he automatically wants to roll over when I sit him up. How do I know he does it on purpose? Well because he giggles, then puts his head down to roll. HA! Smart little cookie! He also reaches for toys...mostly Jared's...tee, hee, "startin' already" (as my Grandma would say).

Jaime playing with Jared's helicopter.

Both boys flying their OWN air crafts.

Personality: He's a ham! He's such a joy to be around. He giggles all of the time. He says: Mama, "Aboo" for bottle, Hi...Dada on accident, "uh-uh" for no and babbles galore. He "flirts" with all of the nurses and therapists. Oh and he always laughs when Jared gets in trouble...brat! HA! He is very nosy, too. I think that's why he sleeps so crummy, he's too nosy! He needs to see what he's missing! Overall, Jaime has a great demeanor, I can't believe it, with all that he's been through, to still smile and be such a happy baby just about all of the time. He almost NEVER cries...and when I say that, I honestly mean it, he cries only a few times a week and usually it's when he wakes up hungry or doesn't want to be put down...can you say SPOILED?!? Of course he does have a bit of stranger anxiety going on and has made it very clear that he does not like a crowd! Good thing he only leaves the house for appointments and special occasions (like my Grandma's 85th yesterday.)

So, that's the update! We're all still truckin' along!

Happy Birthday, Grandma!

The boys this morning before church, sharing a blanket and watching Mickey Mouse. Jaime's holding "Brownie" the new Build-a-Bear dog that Jared made for him. He LOVES it.

Today is my Grandma's 85th Birthday! Tom, the boys and I went to visit her at the nursing home...my aunt and cousins were there, too. It was nice seeing everyone! We also received a surprise call from Titi in Thailand. It was fun to hear from you! Grandma was pretty excited to hear from her, too. We miss you, Titi...and we have LOTS of cookies to make...hurry back and bring some of that 90 degree weather with you!

Here are some photos we took this afternoon.

Cookie Monster.

Jared reading to all of us.

Jaime and his Great Aunt Sandy.

The 4 of us. (Two tired boys)

As for Jaime, he's A-OK. He is tolerating his new formula rather well. He did not throw up for 2 days...not even so much as a gag! He's even taken more "spoon" food, too. Well, I've discovered that he'll eat anything with butter or cinnamon. Yesterday, I split my sweet potato with him at dinner, mashed it with butter and his formula, he gobbled it down. He's been sitting with us at meals in his high chair and we let him "try" soft things off of our plates. I will also make him his own bowl of stuff to eat at the table when we eat. We are still trying to figure out what allergies he may have. I gave him some "real" applesauce instead of baby applesauce while we were out and he got a rash...the same as he got with the flavored Prevacid. So, I'm thinking it's a preservatives thing. See, when I first started giving Jaime baby food or purees, I was told by his pediatrician to use only organic foods. We haven't had any issues thus far with either the food I make for him or the organic baby food. It will be interesting to see how his allergies pan out. Jared is allergic to eggs and oatmeal (you'll notice his red face in the photos with my Grandma and you see him eating a cookie...EGGS!) Jaime tolerates oatmeal really well, haven't tried eggs and don't think I will for a very long time.
Speaking of oatmeal, it's the baby cereal oatmeal. We've been putting either rice or oatmeal in his bottles, not all of them, just some of them. He's been doing great. I only had to gavage 1/2 off one bottle all weekend. Jaime sees Dr. Hellerstein tomorrow morning, I'm soooooo hoping he's gained weight since his last visit. I personally think he has, but only her scale will tell for sure. My home scale says 15lbs 3oz. Fingers crossed for a good visit tomorrow, I'll keep you all posted!

Before I go, I'd like to wish Candice (Mommy to CDH Angel, Jackson), a very happy birthday today. I hope you enjoyed your day with your niece. Here's to a better 2010! :) Many hugs coming your way! :)

P.S. Tonight was also the 13th Annual Worldwide Candle Lighting for babies and children who have gone before us. We lit our candle for all of the CDH babies who grew wings instead of feet and for all of our friends who lost their little ones.

Boom-bah!

Jaime had quite the restless night last night. He was up from 3:00 A.M. until 7:00 A.M., so this meant that Tom and I were up all night, too. He wasn't crying, just restless. I don't know what the deal was, but I know that we are all very tired today. Once back asleep, Jaime slept until 10:15 A.M., he woke up literally 15 minutes before Ellen (PT) came. I must admit, I am sooooooo glad he slept that long, too because Ellen's patient after Jaime canceled and she stayed for 2 whole hours! :)
Now, some of this 2 hour time period was spent updating Jaime's goals. In the process of doing this, we had to go back and see what goals he had achieved. This didn't start off so well. As Ellen read the list of goals we were both saying "no, nope, not even close...etc." So, when writing new goals, we decided to "play" with Jaime, while doing so, he must have been listening to Ellen and I because he was making a liar out of both of us.
When put on his tummy, he extended both arms and "held" this position for a long period of time, then rolled over onto his back and laughed. We thought this was funny, I was so glad that I had my camera close by to capture him on "all fours" and just after he rolled over.

Jaime on all fours with extended arms.

Jaime after he rolled to his back.

Repositioning Jaime on his tummy for a quick cell phone picture to show Daddy.

After the rolling thing, we went back to writing new goals and one of them is sitting. When Ellen wrote it, we both kind of laughed, knowing full well, this won't be happening for a very long time...again, Jaime made liars out of us! And again, I had the camera close by to get my Mamarazzi milestone shots! :)

Like this, right?!? HA! I LOVE the face! Ellen said this is Jaime's "if I do it, Ellen, will you leave?" face.

Ellen holding up a toy for Jaime to grab.

Here's the "Boom-bah" part.

So I entitled this post "Boom-bah" because that's what I say when he "falls" over. Jared and I make a "diamond" with our legs and Jaime's in the middle. We sit him up and when he goes to "fall" we take turns "catching" him and rolling him to the floor saying "Boom-bah." We actually have to roll him the way he would roll himself to get in and out of a sitting position. Make a game of it and therapy is no longer therapy, instead it's just something fun to do with Mommy and Jared. By this evening he was sitting and reaching for toys in front of him...actually, he wanted Jared's pretzels! HA! We are so excited that Jaime may actually be sitting up by himself for his first Christmas! This is a HUGE milestone, especially for someone who just before his second repair surgery and fascia closure, couldn't even move his right side at all, let alone have the abdominal and arm strength to hold himself up.
Another big thing I mentioned yesterday is Jaime discovering his feet. Ellen was impressed by Jaime's ability to get himself into this position today, considering he had two major abdominal surgeries!

Another Mamarazzi shot during therapy.

Jaime had a GREAT therapy session. That "nap" before sure did help him! He was in a wonderful mood, then Joy (RN) showed up! At first he really liked her. She weighed him....15lbs, 3oz! He gained weight since last week. Woohoo, it's the small victories that really count in CDH World. His weight was done to see how much Synagis (RSV Immunization) Jaime would need. She said she's giving Jaime an early Christmas "gift," as only 1 shot was needed...this time! She said it would be the last time he'd get only one shot from her, from here on out, it's 2 doses for the little man! He, of course, screamed and cried. Then, he was calling out for his "aboo." I didn't have anymore Good Start formula left from our little trial on it, so I decided to give him some squash with butter and cinnamon instead. He LOVED it and gobbled down 2 1/2 tablespoons without choking. After "lunch" I ran to Target to pick up some more Good Start. So far he's done OK on it, he spit up twice today...once during therapy (go figure we were rolling him all over the place) and once after Jared and I were playing "Boom-bah" with him, neither time was a giant projectile vomit like he usually does. He did poop 3 times today, that's something we're going to have to watch. Jaime sees Dr. Hellerstein on Monday, so we'll keep him on the Good Start until then. We are also going to keep the NG in until then, even though today he drank MORE than his 28oz a day, I think it was more like 34oz., almost all of it was by mouth. Oh and per Marcia (SP) we are to start adding rice cereal into his bottles. He actually had 3 bottles like this today. The last one being just before bed...God willing the boy will sleep tonight! He's still restless as I type this, though! ARGH!
Speaking of "sleeping" here's a pic of each boy after I put them to bed! Don't they look like sweet, innocent little boys? Wait, neither one of them are asleep in these pics...they aren't sweet or innocent at all....HA! At least I can safely say, that currently, both boys are asleep.



On that note, I'M off to bed! If anyone runs into Santa, can you please tell him that all I want for Christmas this year is one night of uninterrupted sleep?!? Thanks!

And to all a good night!

New things....

Jaime went to the ENT specialist today. Dr. Arnold put a camera in Jaime's nose and down his throat, this initial exam went well. No obvious abnormalities were seen! He did, however schedule him for a feeding test, one where they put dye in Jaime's formula and food and see where it goes. Unfortunately, due to Dr. Arnold's schedule, this cannot be done until January 20th. :(
In the meantime, we are going to change Jaime's formula to Good Start. He had an entire day of the new milk-based formula. He only spit up and gagged one time and it was due to a position change and he threw up spit, not formula. Woohoo! On the flip side, Jaime only drank about 50% of his bottles, the rest of the formula had to be gavaged through his NG. Oh and I almost forgot, he ate some squash today without incident, too! :) It's nice to have some "good" days to outweigh the bad ones.
As for "new things," well, I've already mentioned the formula change. When Marcia (SP) was here yesterday, she took both of Jaime's Boppy's and made him a "new" seat.

In this "new" seat, he found a new toy, AKA, his FEET! It's the first time he's ever been able to grab at his feet. His abdomen muscles MUST be getting stronger for him to be able to bend like this....

Then, yesterday I went to Babies R Us and purchased Jaime a feeding net, among other things for oral stimulation. I LOVED using the net when Jared was a baby. Tonight, Jared wanted apples with cinnamon, so I thought it would be the perfect time to let Jaime try the feeding net. Jaime was able to gnaw on the apples with his gums. He LOVED tasting the apples with cinnamon. It's a great feeding tool for these little ones, it's especially good as they get bigger and can eat baby cookies, they do not choke when the cookies are placed in the net!

Last, but not least, here's Jaime IN his new stocking! :) He's our "sock" present this year! Since we started dating, Tom and I would always give each other "sock" presents throughout the month of December, we've carried this tradition down to our boys. The sock presents are always small little things like candy or pens...stuff like that, anyway, Jared and I thought it would be funny to put Jaime in his "sock" tonight! Yep, we torture the poor boy! He doesn't seem to mind, though! :)


That's all for now...tomorrow Jaime has therapy and will be getting his second Synagis shot. Another day of people in and out of my house! Hey, better them than us, it's SOOOOOOOOOOOO cold out there!
Stay Warm!