Family and friends:
Jake & Josh are simply having too much fun at the hospital to come home.
But it looks like their joyride is almost done.
The holdup has been more of the same: Feeding struggles.
About a week after the last update, both boys underwent a "swallow study" that involved drinking barium-laced formula in front of an X-ray machine. Doctors watched how the liquid went down and discovered that Josh was getting a lot in his lungs. They corrected that by thickening his formula to what's called honey consistency. One doctor calls it wallpaper paste. Anyone who's seen the goop is amazed the kid can suck it through the nipple. While he's able to finish several feeds per day, he doesn't yet have the strength or energy to finish 8 in a day, which is what's required for him to come home. He's getting close, though. And he's getting chubby - the rice cereal used to thicken the formula has helped him bulk up to 11 pounds, three ounces! The other big benefit of this is that formula is no longer flooding his lungs. That will help him eventually get off the oxygen, although it still looks like he'll be coming home with it.
Jake came away from the swallow study with a new feeding game plan, too, and showed some improvement. Then he got some anti-reflux medicine and showed some more improvement. But he never really clicked. So he underwent an upper GI, which discovered the root of the problem: Severe reflux. He had an operation Thursday to fix that (they wrap the top of the stomach around the esophagus, which forms the pressure needed to keep food down and essentially gives it no room to get out anyway). They also inserted a feeding tube. The tube is Jake's ticket to leave. Once he's healed from the surgery, about 7-10 days, there will be no reason to keep him in the hospital. The 8 feeds a day requirement is waived because whatever he doesn't get from the nipple he'll get through the tube. We'll still be aggressive in trying to retrain him on bottle feeding. And, once he gets up to taking all his feeds that way, the feeding tube will go bye-bye. The big problem is that he may have developed an aversion to eating - you would, too, if every time you ate it hurt! (Psychological note: Jake's Pavlovian response is associating a nipple to pain. As part of Josh's feeding routine, he gets a cold pacifier before, during and after he eats to help clear his breathing passage and prevent anything from getting into his lungs. So, when he gets a cold pacifier, he associates that with a feeding about to begin.
Pretty cool, eh?) Jake, by the way, was at 9 pounds, 10 ounces before the surgery. (To see how big they are, there's a photo at the bottom, and a link to a bunch more)
Our best guesstimate is that the boys will be home the week before Thanksgiving or the week of the holiday. There's a chance Josh will be released first, but we're really hoping they come home together. In addition to the logistical difficulty of having one home on oxygen - plus a 4-year-old - and one in the hospital with a feeding tube, there's also an emotional component: Josh is extremely attached to Jake (moreso than Jake is to Josh!) and not having his older brother around would make it more difficult to adjust to a new environment.
So, how long has it been? Well, Monday makes six months. Hard to believe. Just like it's hard to believe that we were told "one month to go" on Aug. 10.
We can laugh at how inaccurate that was. It doesn't frustrate us, though, not as much as everyone expects. Sure, we don't like all the holdups, delays and disappointments, but we accept them in the scope of this being part of what's needed to bring home two healthy babies. We've come a long way since the days of praying to have two babies to take home and haven't lost sight of that. While we were hoping not to have oxygen or a feeding tube, we'll gladly take those temporary obstacles -- and the knowledge of how much they've overcome.
Some of the other medical things that have happened since we last wrote:
** The boys were finally circumcised.
** Their eyes are fine. The ophthalmologist doesn't need to see them again for a year!
** Occupational therapists have prescribed placing them in a donut-shaped pillow for about an hour a day. Why? Because they left the womb so early that they never really adopted the fetal position. The rounding of the spine and shoulders will be important for their balance and posture, so they essentially need to learn how to sit all balled up.
** Another occupational therapy note: Josh was stiff on the left side of his neck, probably because he wasn't using it enough. Why was he always looking right? Because that's where Jake was. So they switched sides in the bed, and now Josh has good rotation in both directions!
** Yet another OT note: Josh has started to get playtime on the floor.
Certain muscle manipulation routines are disguised as having him lay on his side and reach for toys.
** Josh continues to be a big grunter, because of lung problems. How hard does he grunt? Well, doctors believe a broken blood vessel in his eye was caused by a big grunt. It's not a big deal; it happens to some women during hard labor, which is a good example of how hard he's pushing.
** As bad as that sounds, Josh's breathing is actually coming along nicely. He's getting fewer breathing treatments and doctors say his X-rays are looking good.
As Josh's health has improved, so has his personality. He's become extremely happy and fun-loving. Jake has been less social, although he lit up Tuesday when the two of them returned to their initial home, the fourth-floor NICU. He actually seemed happy to be back. He was smiling more than he had in weeks as he soaked up all the attention the two of them were getting from the folks who hadn't seem them in so long. We could probably kick start their college fund by having a cover charge to get to their crib! Then again, they are the longest-tenured babies in the NICU now; popularity apparently is one of the perks that comes with seniority. There are other benefits, too: On Wednesday night, one of the nurses "borrowed" Jake to show him off to a weeping mother who was sad because her 6-week-old baby was still on the ventilator and growing slowly. The nurse said that seeing Jake provided the perfect "tear stopper."
About all the boys have in common these days is very little hair. Jake is blessed with the same shape of face and dark eyes as his mother. Josh looks more like Zachary did with each day, blue eyes and all. Although they came from the same womb at the same time, their differences are what stand out:
** Some examples of Josh's fondness for Jake: Nurses had trouble starting Jake's IV before the surgery Thursday, forcing him to get stuck five times. He cried louder each time (there were even real tears by the end), and Josh started bawling, too. After they were circumcised, Josh did just fine, but his bottom lip started doing the pre-cry quiver when he noticed that Jake was crying.
** The texture of their skin is so different. When they go in the bathtub, Josh gets goosebumps immediately while Jake doesn't at all. But the tape used to hold tubes on their face rips up Jake's skin and not Josh's. Luckily, Jake is almost done having things taped to his face.
** Josh is still Mr. Daytime and Jake the Night Owl. (We asked the surgeon if he could adjust Jake's body clock while he was in there).
While awake, Josh likes to look at people and will follow them with his eyes. Jake prefers to stare at fixed objects. Even if you stand between him and whatever he's staring at, so he has to focus on you, he'll quickly refocus onto the inanimate object. The black grill on the ceiling lights still has a compass-like magnetic pull on him.
At home, Zachary is getting anxious to start being a full-time big brother.
He occasionally asks when they're coming home, and just this morning he talked about not wanting to put away a Halloween toy so he could "scare Jake and Josh when they get bigger." A few days ago, he saw some baby bottles and proclaimed that he needed one to go feed his favorite teddy bear, Buddy. After Buddy was fed, Zac sat with him in a glider to rock him to sleep. Then he put Buddy in the bed with a blanket over him. He later went to check on Buddy and, realizing that Buddy had no stuffed-animal companion, put a Winnie the Pooh toy next to Buddy. Also, when we first talked about putting a crib in our room and another in the nursery, Zac was very upset that we weren't going to put one in his room, too. Be careful what you wish for, big bro!
Thanks again to everyone for the continued love, support and prayers.
They've all been needed and appreciated - and they're obviously paying off! We look forward to sharing with you all soon the news that Jake & Josh are no longer residents of Medical City.
Lori and Jaime
Unfortunately, the folks who run the photo Web site we've been using have made major changes, including requiring a password and making the slide show more difficult. To prevent you from having to register for the site, you can log in as: firstname.lastname@example.org with the password "jakeandjosh"
Once you get them up, click twice on the first picture to activate the slide show. To get it to change pages, you have to click on the Next button above the top right corner of the picture.
Here's the link: