Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Monday, August 17, 2009

4 Month Well Check

Today Jaime had his 4 month well check and got 3 immunizations, poor guy didn't feel all that well this evening. He weighed in at 11 pounds 10oz. So, in short, he gained 6 ounces since his August 3rd appointment. Not great, that equals about a weight gain of 12 grams a day, roughly 84 grams a week. Jaime is still on a 24 calorie formula and his pediatrician doesn't want him to go any higher at this time due to his bowel issues. As for his length, he's FINALLY grown, however, it's only 3/4 of an inch. He's 22 3/4 inches long. He's been 22 inches since June 28th. He's still well below 3% for weight and off the charts (not even 0%) for height. UGH! I was starting to think that he was going to be short and chubby, but he's slowing on his "chub" so now I don't know what to think.
Dr. Hellerstein said that developmentally Jaime's somewhere between his "real" age and his adjusted age. With Jaime being a preemie AND him being so sick, we have no idea what we should be doing with him. We have no expectations, nor guidelines. Jaime is a bit of a tricky case. Dr. Hellerstein said she thinks he's doing well all things considered and that we should expect his growth to be steady, but slow. By age 1, he should even out. She's so encouraging, we just love her! We're due back for another follow up on August 31st.

In other Jaime news...we have a new Oxygen/Respiratory company! They are Hastings Medical. They service the discharged NICU babies from Rainbow Babies and Children Hospital. They have the same O2 concentrator and tanks, but we have a nice carry case for the tanks, a great, smaller pulse ox (with a rent to own contract, rather just a rental contract without owning the machine) and if you notice in the picture, Jaime has new nasal canula tabs. They are mini pre-cut circles that have a pull down tab to insert the canula. It's all just one piece! WOW, what a novel idea! The canula hasn't come out once single time since using the new tabs. Also, they are band aid-like in material and made for sensitive skin! So far, so good! We hope that Jaime's skin doesn't break down, only time will tell. When the respiratory therapist came today, he said our tubes weren't connected right. So, he changed things for us...who knew? Not the old company we had who originally set up the tubes! ARGH! We're just happy to have a company whose priority customers are NICU babies!

Here's Jaime resting on his Boppy with his very first rattle, his giraffe from Poppy. Poppy gave it to him just before his surgery, he loves it!!!



Finally, a little note on Jared...he went to the dentist today. He needs to have some fillings, not because of cavities, but because of how his 6 year molars formed! It's always something. Other interesting tooth news...tonight the Tooth Fairy will once again visit. Jared lost his second front bottom tooth. And when I say he lost it...he literally lost the tooth. Apparently, Tom had just finished grilling and he told Jared it was time to go in for dinner. So for some unknown reason, he bit off his elbow pads after riding his bike and his tooth went flying somewhere. Jared came in to the house and said, "We have a problem, I think I did something wrong." HA! Then, he showed us his hole in his mouth. Tom and I thought that was hysterical. You know for being a hemophiliac, that tooth didn't even bleed! Silly boy!

That's the extent of our excitement tonight! Time to find out where that Tooth Fairy is...tooth or no tooth! ;-)

2 comments:

  1. Love those tender grips for the nasal cannula!! That is what we used for Ian for the first two years. Glad Jaime had a good check-up and he will do everything in his own time, he is one strong little boy. That is wonderful you have a new oxygen company, sounds like they are on top of things. Hope the tooth fairy was good to Jareds, even when he didn't have the tooth!!

    Tracy Meats, Ian's mom

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  2. Very common from what I've observed that these babes have slow weight gain due to their lungs working harder. I love your doctor's attitude too - stick to Jaime's schedule/curve as long as it is steady - that is fine.

    Noah is 7 - and he has his first loose tooth - very loose too - Tooth Fairy will visit here soon too!

    That age for boys - they are very silly!

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