Jake & Josh update

 

Dear family and friends,


Thank you so much for all the overwhelming responses to our first email.


We've  been so inundated with emails, cards and calls that we haven't been  able to even begin responding to them. Please know, though, that we're  very touched and extremely appreciative.


We're also very proud to report optimistic news about Jake & Josh.


On  Sunday, they really seem to have turned a corner and settled in for the  long haul. And Tuesday is their 1-month birthday, certainly a milestone  worth celebrating.


Both boys are off IV feedings and are getting  strictly breast milk -- 3.5 ccs per hour, which comes out to 3 ounces  per day -- and they're getting it fortified with extra calories. Maybe  they're future big-league sluggers-in-training because they sure are  bulking up - they both weighed around 1 pound, 8 ounces as of late  Sunday. The surprising part was that Jake (who had the bowel surgery and  was behind on his feedings until catching up this weekend) was 10 grams  heavier than Josh.


Their lungs remain the No. 1 concern. Doctors  don't like the way the lung X-rays look right now, but they're not  surprised by what they've seen either. They feel so comfortable about it  that they've cut back from daily X-rays to three times per week and likely will go down to twice a week soon.


The problems are caused  by all the ventilation they've been getting and will continue to get  for several months. It's the ultimate Catch 22:They  need the breathing machine to survive, but it's the breathing machine  that's causing the damage. The way to break the vicious cycle is  nutrition, nutrition, nutrition. That will help them develop more,  healthy lung tissue and that will make the damaged tissues better able  to heal themselves.


They seem to have avoided a nasty condition  known as PIE that usually shows up during the first three weeks. The  next goal is to minimize the amount of chronic lung disease they suffer.  The name sounds horrible and triggers visual images of little boys  unable to play outside, but we've been convinced that's not the case.  One doctor said that if he was seeing it in a 60-year-old,  three-pack-a-day smoker then it would be irreversible; not so for these  guys because they can outgrow it. There are some potential long-term consequences, such as asthma, but for now we'll just pray for the day  they can breathe on their own.


How they're doing on a  minute-to-minute basis is measured by their ventilator settings (high  pressure, low pressure, amount of oxygen, oy vey!) and their blood  tests, which are done several times a day. They go through little  episodes called "desaturations" that set off buzzers, which scares their  parents more than their caregivers. Since we can't hold or even touch  them, we have little choice but to focus on the monitors - even though  we're constantly told not to. We've been pretty good about it, though.  They haven't had to tape a card over the numbers to keep us from  watching as they told us they did for one over-obsessed father.


They  don't have as many things connected to them, but it is still difficult  to get a good look at them. We can tell that they're getting bigger,  though, because their hands and feet no longer seem disproportionate to  the rest of their bodies. We can see their little heads and Jake  certainly has more hair than Josh and it's darker than his younger  brother's.


They're still in enclosed incubators, but we've tried  sprucing up their environments. Their "houses" are now covered in  blankets monogrammed with their names, birthdates and a teddy bear; Jake  has a blue one and Josh a red one, matching the color of the Beanie  Babies picked for them by Zachary. The blankets help keep things dark, which is important because light is very unsettling to them. They also  hate noise, so we've put CD players in their incubators to provide  something more soothing to listen to.


As encouraged as we are by  their current status, we can't get too carried away. We must remember  they're still less than 2 pounds and not even supposed to be here for 12 more weeks! But we can take great solace in knowing that they've come  this far and our fingers are crossed that we've already faced, and  cleared, our highest obstacles.


And, in case we get too excited about their progress, all we have to do is remember what happened a week ago Sunday.


The  day started with Jake having blood sugar problems, which prompted  doctors to shut off his feedings. They also were concerned with his lack  of stool, increased girth and a liver problem. Then came a dramatic  change in his X-ray.


The one encouraging thing was that Josh was  having a great day: He went off antibiotics, went off the IV nutrition  and onto full feedings, and was switched to a new ventilator.


Then  things started improving with Jake. He began stooling and that helped  ease his bloated belly. They restarted the feedings after determining  the liver issue was related to getting too much IV nutrition (something  they're now treating with medication). Best of all, the X-ray scare  wound up being a one-day aberration.


Soon after, Josh began  regressing. A bad episode resulted in him being put back on antibiotics,  back on strictly IV nutrition and no breast milk, and going back to the original ventilator - in other words, he wiped out all the gains he'd  made earlier in the day.


Josh's drama ended up being caused by a  bad burp. Some formula came up and went down into one of his tubes,  clogging things up. As simple as it sounds, we were told there were some  tense moments while they figured out what had happened and then when  they were cleaning it all up.


It took until the middle of the  week for them to get back to where they were before those crazy days,  but it provided us with a good lesson in the frailty - and resilience!  -- of these little guys.


Speaking of resilient fighters … Lori  got a great checkup from her doctor last week and was cleared to resume  doing anything she feels up to, which primarily meant being able to  drive. The doctor described Lori as "amazing" and nobody can doubt that  diagnosis.


Zachary made his second visit to see his baby brothers  on Saturday and wasn't so thrilled to be there. I'm sure other factors  were at work, so I'll instead give details of another brothers-related  conversation he and I had one night recently.


We had left him at  Lori's parents while we made a nighttime visit to the hospital and he was asleep when we picked him up. While putting him in bed at home, he  woke up briefly and said he loved me. I told him I loved him and that  Jake and Josh loved him, too. Then he said, "How are the boys doing,  Daddy?" which made me laugh because he's never referred to them as "the  boys" although he's certainly heard us and others use that exact phrase.  I told him they were doing fine and he said, "That's great!" with all  the enthusiasm he could muster.


As for future updates, we'll  send out another email when there's more to report. We also have our  "hotline," which we update daily. The number (214-692-1810) also has an answering machine, so feel free to leave a message if you'd like.


And,  if you know anyone else who would like to be in the loop on the boys,  please forward this email to anyone you'd like. Have them email me back  if they'd like to be added to the distribution list.


Thanks again  for all your thoughts and prayers. The love and attention everyone has given us and the boys is certainly the gold-plated silver-lining to  everything we've been through.


Love,
Jaime and Lori