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More good news about Jake & Josh

Dear family and friends:

This latest update is overdue, but happily the extra time has brought more good news to share.

Here are the headlines:

** Both boys are over 3 pounds.
Josh is 3 lb, 5 oz and Jake, who has always weighed less, has closed to within three ounces, thanks in part to a calorie-rich oil that's being slipped into his feedings. By the end of the weekend, both could be triple their birth weight (1 lb, 2 oz.)

** We're getting to hold each of them every day.
Lori usually gets one in the morning and I get the other at night. All holds are for at least an hour because getting in and out is so stressful to them. It's amazing how much of a bond develops during that time. This past weekend we had the treat of both of us holding one at the same time; it was the first time we'd done that. (One perspective note on this: The first time Lori held Josh was on his six-week birthday. That's the equivalent of getting a gift on Christmas and not opening it until Feb. 5)

** Their ventilator settings have been reduced, which means they're breathing more on their own, which is the first step towards getting off the machine. (Although doctors say this is still 3-4 weeks away) The main change has been lowering something called the rate, the number of mechanical breaths they get per minute. Both were at 40; Josh is now at 28 and Jake at 17. It's mindboggling to imagine the difference. For example, when they drop it by 3 (the typical amount), that's 180 fewer puffs of machine-spewed air per hour and 4,320 per day. You can only imagine how much better that is for their lungs!

** Their feeding cycles have been changed with an eye towards eventually going home. Instead of getting fed continuously, they're now getting three hours' worth of food over two hours. The interval will drop by 30 minutes about every week until they're down to a schedule that mimics breast-feeding cycles.

** Their eyes were examined for the first time on Monday and the initial evaluation was extremely positive. However, this was only a baseline exam. The next two to three weeks are the most-crucial phase, but at least we know they're heading into it on a good note.

Despite so much good news, we know we have to temper our enthusiasm. (Or, as cliché-spewing athletes love to say: "You can never get too high or too low.") After all, the boys will have a machine breathing for them for another month and will be hospitalized for probably another month beyond that. We won't know the quality of their lungs, eyes and ears for about that long, and we still haven't heard them cry.

On a daily basis, though, we don't focus on those things. Our typical questions each morning are about how they rested overnight, how they're holding their oxygen, how much oxygen they're getting (which is different from the rate), and whether the doctors have made any changes. We also get an update on their weight, which is taken overnight.

Although Saturday will be our 10th week, it amazingly doesn't seem that long. Probably because of all the progress they've made, each day seems more like a celebration than another agonizing 24 hours. And celebrate we do - every Saturday (another week!), every Tuesday (another week in their gestational age, which is now up to 33 weeks!) and every 11th (another month!).

How long has it been? Well, consider that we've been there for Mother's Day and Father's Day, plus bank holidays Memorial Day and Fourth of July (which was celebrated with tie-dyed socks made for the boys by one of the nurses). Over the weekend, a colored-in, Sesame Street-theme card proclaiming them as members in the 2-Month Club was taped up next to their incubators.

The socks and the card are typical of the support and encouragement from all the caregivers in the NICU. From doctors and nurses to the respiratory therapists and other families up there, there's the unspoken sense that we're all in this together.

Anyone who has spent time around the boys always comes back to check on them and lately they've all said the same thing: "I can't believe how big they've gotten!" My favorite line comes from a friend who heard their latest weight on our update hotline and left a message saying that we're "raising a pair of offensive linemen."

Their physical changes are visible to us, too. We've had days where we notice drastic changes overnight. One day, Josh's face looked completely different; about a week later, Jake made the same change. Their growth is most evident in their limbs, like the forearms and thighs. Here's the best example: The day of Jake's frightening surgery, Jaime slipped his wedding band on his left hand and the ring went all the way up to Jake's shoulder. (To put this in context, a dime can slide through the band but a penny can't). Well, we tried this again recently and the ring only fit over three fingers! A funny illustration of their growth: They've moved up from the wonderfully named "Wee Pee" and "Wee Pee II" series of diapers to regular preemie diapers.

So, you want see what the boys look like? After several failed attempts at setting up a Web site, we put together an online photo album viewable at: Click the orange "View Pictures" button or click on the picture that pops up to start a slideshow. A new window will pop up with the slideshow. The speed can be controlled by clicking on the slower/faster lines in the bottom-left corner of the new window, or you can use the CD-player like buttons (prev, stop, play, next) in the top-right corner.

By now, you pretty much know the most important information. However, because writing this is so therapeutic for us and because it's something that will eventually be shared with Jake and Josh when they're old enough, here are some more details for those still interested …

Getting to hold the babies so often is so rewarding. In fact, it's hard now to even remember how we spent our time up there the first five weeks, when we didn't get to hold them at all. (It's sort of like not remembering what it was like being married without kids!)

Whether we sing to them, talk to them or even talk to doctors, nurses and others walking around, it's always a thrill having them in our arms. Best of all, it's good for them, too - usually. Unfortunately, we've both had times where things didn't go so well and the boys had to go back before their hour was done. Josh is usually the one who has problems. We thought it meant that sometimes he just didn't feel like being held - until today when a friend gave us a new, better perspective: It means that he's so excited about being with Mommy or Daddy that he gets overstimulated and needs to go back into the incubator to chill out.

Their lungs remain a top-level concern, but doctors say they're starting to see improvement.

X-rays -- which are only being taken twice a week, down from every day the first month and three times a week for much of the second month -- are starting to clear up, although it's interesting to note that that's the last place where progress shows up. The better indicators, doctors say, are the ventilator settings (rate and pressure), the amount of oxygen their getting from the ventilator and how frequently and how intensely they "desat" (drop their oxygen saturation, which is usually what we're referring to when we say they do badly while being held or "have a bad night.").

The game plan is to be aggressive with the changes, challenging them to improve. For the most part, they've responded well, although there have been times where the doctors have had to back off - like when Josh's rate went from 25 back to 30; it's now 28.

The next step will be lowering their pressures, which is the amount of air that gets left in the lungs after each breath (low pressure) and how much they inflate the lungs during each breath (high pressure).

A complementary factor being monitored is the oxygen level, or the percentage of pure oxygen in those breaths. We inhale 21 percent, so that's the goal for them. Lately, Jake has been in the high-20s and Josh in the high-30s.

How do they know whether it's working? By checking how much carbon dioxide is in their blood. They do these on tests called blood gasses, which remove a smaller amount than a typical blood test.

Another highly technical change involves how the ventilator reacts to the few breaths the boys take on their own. At first, they were getting "assist control," which raised each breath to the same level as the machine breaths, for consistency's sake. Now they're on "pressure support," which doubles every breath so that little ones become big ones and big ones become huge ones.

The new feeding cycle is a very encouraging change. The volume that they're getting is no different from before, but the timing is extremely different. Best of all, the boys have handled it with no problems.

There was, however, a bit of a problem when Jake first got the fat-building MCT oil (no, the C does not stand for Castor). He was terribly uncomfortable the first night he had it; ended up that the oil caused him gas, which is a common side effect. How'd we know that was the problem? Well, he's the one whose bowel is attached to a plastic bag - and the bag was so filled with air that it was hard as a rock. It was actually pretty funny to see, and great to know it was something so simple. They cut back on his frequency and he began to tolerate it better; he now gets it every feeding, which is eight times per day.

They're still getting fed vitamins, but there've been some other changes that reflect progress.
** Jake is off a medicine he was getting to treat a type of internal jaundice that built up when he had the bowel problem. Doctors said it would take a long time to go away and sure enough it did.
** Jake is still getting doses of sodium chloride (salt) because his system isn't maintaining enough of what he gets from the breast milk.
Josh, however, is doing a better job of retention so he's off it.
** Jake is starting to produce his own red blood cells, which is a step towards avoiding more transfusions. It's sort of a race against the clock, though, because if he needs a transfusion before he produces enough, all the ones he's made will be wiped out. Still, he's a bit ahead of schedule by doing that at this point.

You may have noticed that Jake seems ahead on a lot of things, and you may remember that he's the one who had more setbacks early on (he was the one whose water broke two days before birth and he had the bowel surgery). Well, the two things are actually linked. Babies respond to fetal stress by accelerating their development, thus better preparing them to fight for survival. Should they overcome that battle - as Jake has - then they tend to do better after that, too. This is especially evident in twins because you can compare one to the other. More proof came from another set of twins in the NICU before us - their baby who had more fetal stress already went home and his less-stressed brother is still there.

Here's one final medical tidbit: Did you hear about the twins from Egypt that are conjoined at their heads who were in Dallas to determine whether they can be separated? Well, they were at our hospital and the doctors and nurses from Egypt spent a lot of time in the NICU, including time studying our babies. Despite the language gap, our nurses were able to explain to the Egyptian nurses that Jake and Josh were born at 23 weeks. The Egyptians couldn't believe it; in their country, they do little to try and save any baby born before 34 weeks!

In closing, we'll leave you with the latest Zachary story regarding the boys.

Before going to the hospital at night, Jaime developed a routine of asking Zac if he had anything to say to Jake and Josh. The response one night was frightening: "Tell them that you love ME." Fearful that he was getting jealous, the question wasn't asked for another week. Then, the response was: "I already told you! Tell them that you love THEM." Huh?
Asked again, he repeated the answer. The next night he was angered by the question and demanded a new routine that he asks for every night:
"Tell them you love them, then tell them that I am at home, then tell them you love them again, then give them each a kiss to see which one smells more yucky."

Spoken like a true 4-year-old!

Our continued thanks for all your gracious calls, emails and for any donations to blood banks. We draw strength from the love and support we've received and we're certainly convinced all the thoughts and prayers are part of the boys' progress.

Lori and Jaime

P.S. - In addition to being slow on the email, we've also cut back on the telephone updates (214-692-1810). We'll still be changing the message, but only every few days now. We check the machine every day, though, so feel free to leave a message anytime.