Family and friends,
It's with great pride and pleasure that we bring you the latest news on Jake & Josh as they cruise toward their 1-year birthday showing few signs of their frightening early arrival.
The big day is May 11 - Mother's Day - but the date we want you to circle on your calendar is May 25, because that's when we're throwing a party. Details on those plans are below, as is a link to the latest pictures; first, the update.
The biggest news is that Josh is off oxygen. We'd been taking him off it in short bursts for several months, but it wasn't until late March that he could handle it for more than a few hours. Once he started to progress, he advanced quickly. We got the official word that he can go without it last Monday, although the pulmonologist wants us to keep it handy just in case. Still, we feel confident in saying we can check this one off our worry list.
While the medical progress is wonderful, there also are practical reasons why this is so great. Best of all, Josh no longer has an uncomfortable tube in his nose or the patches on his cheeks that kept the tube in place. He's also no longer tethered to anything, which gives us freedom to carry him anywhere. For many days after his "release," he was wide-eyed when going into rooms he hadn't been to very often - including his own! (The den and our bedroom, where their crib is, had been his primary hangouts.)
We got more insight into Josh's condition in early January when doctors inserted a scope into his throat for an up-close view of his breathing problems. They initially thought they saw a cyst blocking his airway. As bad as that sounds, it actually would've been good news because it's easy to pop, thus solving the problem. However, upon closer inspection, doctors discovered that it really was a buildup of scar tissue, a condition known as "subglottic stenosis." His airway was narrowed up to 50 percent.
Again, this sounds scarier than it really is. As long as he doesn't need another tube down his throat - and now that he's off the oxygen, odds are high that he won't - he won't add scar tissue. But he will grow healthy tissue around it. And as his throat gets bigger, the bad stuff will be less of a factor. The only long-term impact is that it might change the sound of his voice - but since we never knew what he sounded like before, we'll never really know the difference. (An incredible sidenote is that Jake had a tube down his throat about a day less than Josh, yet has no problems at all. The ear-nose-throat doctor said this is one of the hardest, strangest things to predict or explain. As an example, he said the most scar tissue he's ever seen was in a baby who had a tube only a few days; Jake & Josh had it for three months.)
The last major hurdle - for both boys -- is a pretty huge one: Feeding.
Simply put, they have no interest. Then again, if you got fed every four hours and never knew the sensation of being hungry, you wouldn't have much incentive to eat either.
We try spoon-feeding them once or twice a day, giving them the usual stuff babies get - basic fruits, veggies and rice cereal. The therapist who's been working with them has tried appealing to their sense of taste with a surprising variety of offerings: Lemonade, yogurt, Popsicles and Cheetos cheese puffs. She's confident that physically both boys can do it - they just don't want to. This is unfortunately somewhat common among babies who get G-tubes as early as Jake & Josh did.
They're not having any problem putting on weight, though. Jake is up to
15 pounds, 15 ounces, while "baby" brother Josh is a hefty 17-3. They're getting so big that they are soon going to need their own cribs. No one who meets them can believe they started out a frail 1 pound, 2 ounces.
Best of all, both are extremely happy and full of smiles. And they're wonderfully different - so much that they're great candidates for a "least alike contest" advertised in Twins magazine. Even their smiles are opposites - Josh sticks out his tongue and grunts; Jake has a wide grin and shakes his arms and legs.
Jake is longer and slimmer, with olive skin, brown eyes and short, dark hair. He likes to be startled and loves to sleep; he ditched that "Wide Awake Jake" nickname soon after coming home. His best trait is being verbal. He coos a lot, thrilling himself when he realizes that the sounds he's hearing are coming from him. That leads to more "singing,"
which in turn makes him even more thrilled. It's a wonderful routine.
He's also mastered something called "shutting down," which means he falls asleep when he's being asked to do something he doesn't want to do
- like spoon feeding or his physical therapy. It's pretty funny.
Josh is pudgier and fair-skinned with hazel eyes and wispy blond hair that curls up on the ends, especially behind his ears. He's not fond of being startled or of sleeping. He loves splashing with his arms and legs while getting a bath, and looks more like Zachary every day. Josh's strength is his physical development. He rolls over with ease, gets on all fours and can pivots in any direction. In other words, he's close to crawling and can nearly sit up on his own. He's also starting to make some sounds, although he's yet to realize he's doing it.
They love looking at each other and get especially giddy when they see our dog, Coach, or their big brother, Zac. He's very sweet with them and is incredibly understanding about how much we need to do for "HIS"
Our daily routine involves feeding the boys through their tube every four hours (8-12-4 am/pm), with various medicines squirted into the line before and during four of the six feedings. A physical therapist provided by the county comes to the house once a week and we still seem to have one or two other appointments per week, although the pace should start slowing.
While we still have various long-term concerns, that doesn't make us unique. What parent doesn't worry about their babies' health? We try keeping that in mind as we condition ourselves to think of Jake & Josh as "normal" infants. (According to their "corrected" age, they're almost
We got a funny lesson in "why not to over-react" just last week when a mysterious red splotch and puffy bumps on Josh's leg turned out to be … mosquito bites.
The best part of the boys' incredible progress is being able to share their uplifting story. We've been asked several times to call or e-mail parents who suddenly find themselves stuck in the NICU and we love being able to help. We certainly understand everything they are thinking, feeling and fearing, and hope we can comfort them by sharing our experiences.
We look forward to more opportunities to spread the word, too, as Jaime is working on a wire story about the boys' unique arrival and the hospital is considering using Jake & Josh in an ad campaign focusing on success stories from different units. The NICU recommended us as their story to tell. Regardless of whether the boys end up being used, it's quite a thrill to know they're thought of in that category.
Despite the boys' wonderful progress, we've still only taken them out of the house for doctor's visits, some family functions and one purely social outing: Watching Zac play soccer. (Quick Zac story: While Jake was being held, Zac jumped into the double-stroller, turned to Josh and said, "So, how do you like your first soccer game?")
But now that RSV season is almost over and since they're going to be a full year old, it's time to start showing them off. And that's a great reason for a party.
It'll be Sunday, May 25 (the Sunday of Memorial Day weekend), at 3 p.m.
at Abbotsford Court, their Uncle Kyle's place. It is located in Addison at 14775 Midway Road, just north of Spring Valley and south of Belt Line, on the west side of the street. Once we have more details, we'll send out a formal invitation - or, at least, as formal of an invitation as can be sent via e-mail. But that's the basic info.
We know many of you have passed along the boys' story either by forwarding our e-mails or through word of mouth. We hope you also extend this invitation to all those Jake & Josh fans. The more people who come, the better. All we ask is for an e-mail or a phone call (214-692-8996) letting us know how many folks you'll be bringing so we can plan accordingly. Kids are invited, too.
From our perspective, everyone who attends is much a guest of honor as Jake & Josh. This will be our way of saying "Thank you" for all the thoughts, prayers and other gestures that have helped all of us get to this point. That's why rather than calling this a birthday party or a baby naming, we're referring to it as a "Celebration of Life" - which also is why we don't want any gifts.
There is one favor we'd like to ask: Please make sure you and everyone you come with are completely healthy. A lingering cold or cough might not seem like much to you, but it still could prove harmful to them.
Thanks again for everything. We look forward to seeing you on the 25th.
Until then, here's the link to the latest J&J pictures:
Lori and Jaime