Family and friends,
The boys have been clearing hurdles so often lately that every time we sit down to let everyone know the good news, there's been more to report. We've finally caught up and today, their 100th day, we're proud to have lots of great news to report:
** Both boys are off the ventilator!
Jake went off early on Tuesday, Aug. 6 (Day 87), and Josh joined him late the next night. Jake tolerated the next level of breathing equipment so well that this past Tuesday he advanced to the final stage of assisted breathing. Josh has struggled a bit and has been forced to wear a heavily restrictive device that he hates. (You would, too, as you'll see in the pictures linked to below.) He's gone off and on it several times, but is stuck with it now. Hopefully he'll only have that contraption for a few more days, then join Jake in wearing the nasal prongs familiar to anyone who's ever gotten oxygen while hospitalized.
** Two boys, one crib!
The boys were reunited on Friday, Aug. 9. Josh certainly missed his brother because the nurses said he seemed very relaxed immediately after being placed alongside Jake. It does wonders for us, too!
** They're still growing.
Josh cracked the 5-pound mark last night (5 pounds, 2 ounces, actually) and Jake remains a few ounces behind at nearly 4-11. It's interesting to note that Zachary was born at 4-12 at 36 weeks gestational age, and the twins will be 38 weeks tomorrow.
** Three months down, one to go?
Last Sunday, the boys' 3-month birthday, a doctor estimated that they'd be going home in about a month; over the weekend, another doctor put it in the 4-to-6 week range.
With twins, one usually goes home before the other. In our case, Jake is farther ahead of Josh but he also needs to have an operation to re-attach his bowel. That will happen once he's over 5 pounds, 10 ounces (2,500 grams). So maybe they could wind up coming home together.
** They're not likely to need any more blood.
Tests show that they're producing plenty of red blood cells, far more than they're losing to blood tests. This means they won't need any more transfusions, and they've avoided a medicine often given to preemies to stimulate the production of red blood cells. Bottom line is they won't need to get stuck with a bunch more needles.
** They might be twins, but they're certainly not identical.
Josh's hair is on the blonde side and Jake's is darker. Jake also has a bit darker skin tone, which is a residual effect of his bowel problem. It's noticeable mainly when the two are next to each other. Doctors say this could take weeks, months or even years to go away, but medically it's no big deal. That's just the looks. Their personalities are what's really different. Jake is Mr. Cool, pretty much always relaxed and seldom a problem.
Not Josh. He's often called "a little toot" for his irritability, and the way he's always using his hands to try pulling out his tubes.
** They're just like … babies!
It's strange to say, but we finally feel like the parents of "regular" newborns. No vent, in a crib and nearly 5 pounds - yeah, that's pretty normal. And, because they're tubeless, we can see them smile and hear them hiccup and cry (although it's scratchy, because of the damage from the tube). We've also starting cradling them in our arms when we hold them. When they open their eyes and look up at us … well, anyone who's ever held a baby knows how good that feels.
More typical baby stuff: They've received their newborn immunizations and they're getting bathed in a plastic tub. Next up is beginning nipple feedings, which could happen this week. They've been training for it by sucking on a pacifier during their tube feedings.
In a way, none of this should be too surprising. After all, given their gestational age they likely would be here by now anyway, we just wouldn't have had all the dramas of the last few months!
While we feel as if we're coasting through a sea of good news, we also know there are still some obstacles out there. Topping the list is the usual trio of lungs, eyes and ears (which won't be tested until just before they go home).
** We won't know whether there's been any permanent lung damage, or how much, for months, maybe even years. But now that they're off the vent, they're certainly headed in the right direction.
** The latest eye exam was considered the most crucial -- the doctor described the risk chart as a bell curve, based on gestational age, and this test came at the height of it. The results: Josh is perfect in one eye and slightly off in the other, while Jake is a little worse in both. Considering their extreme prematurity, those are good results. Jake will be tested again in two weeks, Josh in three.
** Another concern that's come up is that Jake has a hernia and will need an operation to repair it. Unfortunately, it can't be done at the same time as the other operation he needs. This procedure - which is considered extremely routine -- will likely be done two or three months after he comes home and will require only an overnight stay in the hospital. The doctor who first noticed it said she was surprised that both boys don't have it on both sides of their groin because it's so common in preemies. Josh appears to have dodged this one - a doctor said today that if he doesn't have it by now, he probably won't get it.
In case we were taking the boys' stability for granted, a few rocky days at the end of July snapped us out of that.
Soon after the boys were immunized, doctors lowered some of their vent settings. The combination of the two must have been overwhelming because both began having trouble breathing. There also were lots of tube problems, including several times when the boys pulled them out.
Once things calmed down, we realized we probably overreacted. What made it all seem so bad was that we'd become so accustomed to everything going right. Sometimes it takes a little needless scare to remind us how great these guys are doing.
We got the worst kind of reminder a few days later when three babies in the NICU died in one day. It was practically unprecedented at our hospital and left many of the caregivers very shook up; for us, it served as the ultimate reminder of how fortunate we are. While each of those three babies had unique problems and was very serious to begin with, our boys were once in that high-risk category, too.
The odds Jake & Josh have overcome just to be alive are incredible. To have come out of it all in the shape they're in is even more remarkable. In fact, for just one of them to be doing so well is a big odds-beater; for both of them to have done it is truly superb.
We've finally let it sink in that there's no longer a question of "if" the boys will come home, only "when." We've even started setting up their nursery.
Only two babies have been in the NICU longer than Jake and Josh; one is close to going home and the other isn't. Being in there the longest is certainly not a claim we want to have. However, we have been there long enough that a cashier in the cafeteria recently asked Jaime, "Don't you work here?"
Sometimes, though, we do get put to work -- and we love it.
In anticipation of the boys going home, we've been allowed to be more involved in their treatment. Lori gave Jake a breathing treatment this week (a picture of it is on the attached link), and on Friday she learned how to give them some physical and occupational therapy. Odds are that we'll be continuing both treatments at home. We also soon will get to start doing their baths.
Best of all is that the boys are responding to us more every day.
Whether it's a squeeze of a finger, a turn of their head or following us with their eyes, we know we've connected with them. Jake sometimes wriggles around while being held to look at Lori while she talks to him; he also recently squirmed when heard Jaime's voice on the phone (Lori was holding him and she put the receiver to his ear).
An ongoing source of encouragement through all this has been the love and attention we've received, from family, friends and even our caregivers. So many people within the NICU came over to congratulate us the days the boys went off the ventilator and when they went into the crib that we felt like celebrities.
There have been so many other wonderful gestures by so many people that we haven't mentioned any in these e-mails for fear of slighting anyone. However, we want to make an exception because of the extra special meaning attached to a particular one.
Derek Lewitton, a college friend of Jaime's, lives in Tel Aviv and drove to Jerusalem with Mary, then his fiancé and now his wife, to place a prayer in the boys' honor into the Western Wall. They parked on the outskirts of town and took a cab to the Old City. The driver waited for them while Derek inserted the prayer and Mary took pictures of it. (This, too, is in the attached photo gallery).
Here's what Derek wrote:
Please, God, help Jacob Benjamin Aron and Joshua Caleb Aron overcome the challenges of early birth. Please help them live long and full lives, surrounded by the love of their parents, Lori and Jaime, their brother Zachary, and, ultimately, their own children. Please answer the prayers of all the family and friends who want to see these boys grow up strong and healthy. Thank you.
Before we finally give the photo link, no e-mail would be complete without the latest Zachary stories.
Zac, a master negotiator, has figured out that if he lets Jaime go to the hospital early, then he can fall asleep in Mommy & Daddy's bed, often while watching a video. He also went through a phase of constantly agreeing to see the boys "the day after tomorrow," until paying a visit on Saturday. It went well, too, especially when he got a tie-dyed shirt from the nurse who had made the tie-dyed outfits for Jake & Josh.
Then, on Sunday night, we happened to see the head doctor from the NICU at a restaurant. He came over to say hello and Zachary repeatedly said to Jaime, "Ask him how the boys are doing!"
That's all for this time. We hope to have more great news to report next time. Until then, here's that link to the photos: http://adobe.shutterfly.com/osi.jsp?i=67b0de21b304b825259a
And, the directions, same as last time: 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.
Lori and Jaime