May 30, 2007

Introducing...Grandpa Myron!

...who, in this photo, is trying to teach BJ how to box. He took some time out from the boxing lesson at one point to remind Lori, "Don't choke the baby." (She has three daughters, so we're pretty sure she has the no-choking thing figured out. But, it doesn't hurt to have a stern reminder from your dad once in a while.)
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Introducing...Mary Jean!

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Introducing...Aunt Barbara!

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May 29, 2007

Couldn't have said it better myself

I was reading a book today that pretty much summarized how I felt the first few days of Benjamin's life...

"One day you have hope; another day you're paralyzed with fear because [his] lungs have shut down. I know the obsession with every ounce of weight gain, the concerns over infection...and other problems that can occur. You see your baby lying in the NICU and you feel utterly useless. You're recuperating yourself, your hormones are spiraling out of control, and yet you must also face the possible death of your child. You hang on the doctor's every word, but half the time you forget what he or she said. You try to convince yourself that even in the bad news, there is some good news, some hope. But every hour, you're wondering, "Will [he] survive?""

- Tracy Hogg, Secrets of the Baby Whisperer

I think we were both wondering, but too afraid to ask - "Is he going to make it?" But, once those first few days were over and doctors and nurses started saying things like "When you take him home..." we realized we knew the answer to that awful question -- and things got significantly better.

We went back to Lutheran General for the first time today (for a follow-up appointment) since we left the NICU and it was definitely stressful to be driving back there again...and WEIRD! We talked in the car about how strange it was to drive there with Benjamin in the car rather than him waiting for us at the hospital. We didn't even have to scrub up to our elbows when we got there. And then we just left with him again. I think we were nervous the doctor would find something else wrong with him and decide to keep him there again or something. But no...we walked out as easily as we walked in. I suppose we'll be getting used to this eventually.

Oh, and the follow-up appointment with the surgeon went just fine. He'll have his next surgery when he's 12-pounds and then another surgery 6-weeks after that. Eat, Benjamin, eat!!!

- becca

May 25, 2007

More pictures

Benjamin has a new cousin!

Check out the kisser on Benjamin's new baby cousin, Dahlia!

Birthday: May 23, 2007
Weight: 6 & 1/2-pounds
Length: 19-inches

She's already kicking Benjamin's tush in the weight department, but he's longer (19.5-inches)! So there!!

Bragging a little

Benjamin is 16 days old today and I'm officially back at my pre-pregnancy weight!

Granted I did maintain a pretty strict diabetic diet throughout a good part of the pregnancy and only gained about 20-pounds, so I didn't have a ton to lose. I was discharged from the hospital about 20-hours after delivery and went strait to the NICU and pretty much didn't rest or sleep for those first 11 days.

I'll write a diet book, I think, and make some benjamins for Benjamin.

- becca

May 24, 2007

It has a name

We finally have a name for it - VACTERLS Association. It's an acronym for a group of these related birth defects:

(V) = vertebral abnormalities
(A) = anal atresia
(C) = cardiac (heart) defects
(T) = tracheoesophageal fistula
(E) = esophageal atresia
(R) = renal (kidney) abnormalities
(L) = limb abnormalities
(S) = single umbilical artery

A baby with three or more of these defects is classified with VACTERLS Association. It's called an "association" because these defects are associated, but it's not a syndrome because it's unknown which genes cause it.


Answer: Unknown. The cause is unknown, but does not appear to run in families and hasn't been shown to be caused by a drug, chemical, or other environmental factors. There is a slightly higher incidence of this occurring if the mom is diabetic (becca had gestational diabetes).

The chances of this happening are 0.016% (that's less than 2 babies out of 10,000). Just our luck! We gotta start playing the lottery or something.

May 23, 2007

It's weird...

It's weird...

...not removing our rings and watches to visit the baby.
...not scrubbing up to the elbows 20 times a day. pick up Benjamin and not navigate a bunch of tubes and wires. feed him in private.
...not to have to ask a nurse for permission to hold him. just assume his heart is beating and his lungs are breathing without a monitor to look at. dress him in clothes. be normal. And it's wonderful.

May 22, 2007

First trip to the pediatrician

Ben had his first trip to the pediatrician today! It was his official 2-week appointment...just like any other newborn baby.

He was a champ. The first thing they wanted was to weigh him. This meant undressing him down to his diaper. Then, when he got to the scale they wanted the diaper off. BIG mistake. He peed all over the scale...there was just no containing it. They'll probably have to buy a new scale or something.

He's grown 1/2-inch and gained 4 ounces! At this rate he'll be ready (12-pounds) for his next surgery in no time.

What a good little traveller he was, too. He slept the whole way there in the car. Then he slept through lunch at Great American Bagel. Then he slept through shopping at Ulta, Target, and the guitar store. He finally woke up and started fussing about 5 minutes from home. Pretty awesome.

Introducing...Uncle Tony!


May 19, 2007

Test results and all that

We realized that in our excitement about busting Benjamin out of the NICU, we neglected to make an update about all of his tests.

The MRI of his spine was "inconclusive". One image showed no tethering and the other image showed a possible tethered cord. So, we'll have another MRI in the future to check for this tethered cord again.

There were two kidney tests - a VCUG and an ultrasound. The VCUG went well and his kidneys are working fine. The ultrasound, however, showed that one of his kidneys is swollen. This means a round of antibiotics for now.

We've also been told that when he weighs 12-pounds he can have his next GI tract surgery.

This little guy is all about the follow-ups. His discharge papers outline it all...

See the pediatrician in one week
See the general surgeon in two weeks
See or contact the cardiologist as needed
See the orthopedist in one month
See neurosurgeon in 2 months
See nephrologist in 3 months

So, obviously, Benjamin is a wildly popular little guy. Ten days old and his calendar is already booked for the next three months!

Ben meets the yard

Finally, finally, finally our baby in his car seat!

Benjamin meets the hammock.

Binny meets Boone Creek.

We probably slept more last night than we've slept since he was born. It's good to be home. It's indescribable to be home with Benjamin.

May 18, 2007

WE ARE HOME!!!!!!!

Finally, finally, finally we are all home together!

Benjamin is sleeping IN HIS CRIB...IN HIS ROOM...IN OUR HOUSE!!!!!!!!

Pictures to come, of course.

Words just can't describe how wonderful it is to have him home.

More tests...grrr.

We still haven't left yet.

At the last minute, one of the doctors decided they wanted to do some more tests on Benjamin's kidneys. This means another ultrasound and some other test...and more waiting.

We go to the NICU at 6:30am this morning so we could meet with the neurosurgeon. We didn't sleep at all last night. Needless to say we're tired and anxious and ready to get out of here. NOW.

May 17, 2007

Not going home today

Well, we're not taking Ben home today after all. It turns out he needs another MRI because the one they gave him last night didn't get a good image of the area they need to see.

So, we're back to waiting for an MRI to happen. The last we heard it was going to be at 1pm, but then the machine broke or something and has to get serviced.

We have one of our favorite nurses right now, though, so that makes it a little more bearable. She's getting us set up with all of our supplies and medicines and all that. She's a real take-care-of-business sort of gal.

Hopefully tomorrow (Friday) is the day!

May 16, 2007

MRI - there and back

Well we finally got the MRI done tonight. It was supposed to be at 11am...then 1pm...then 4pm...then, finally, it happened at 7pm.

First, he got a little sedated....

Then he got to ride in what is probably the world's most expensive stroller...

And then he came back again, still pleasantly sedated.

Somehow we ended up with a bulb syringe to take home. Guess it had to be transported with him to the MRI or something, so they gave it to us when it was over. Very confusing.

We're getting sick of all these pictures of him swaddled in the hospital blanket with the stripes and then covered with the little blue afghans. Can't wait to have pictures of him in his own clothes!!

MRI today

Today is Benjamin's big MRI. He'll be sedated for it because it's a very noisy test and he has to be very still for it.

This test should tell us a lot more about what's going on with his vertebrae and spinal cord. If things seem okay, and the neurosurgeon and orthopedist okay it, he should be able to go home on Thursday. (YAY! YAY! YAY!)

Needless to say, we're pacing a bit over here.

Behind bars...but in a good way

Little BJ has been put behind bars! Of a crib that is. Yep, not only did he graduate from Pod D to Pod F, but he also traded in his old isolette for a crib!

We got out of Pod D just in the nick of time. I don't know what was going on around the NICU yesterday, but people were constantly being paged to Pod D - "Respiratory to Pod D"..."Dr. Patel to Pod D"..."Pumps to Pod D". Again, it's good to be in Pod F.

We got to finally bring him some things. The white blanket is the one they had everyone sign at the baby shower they threw for Ben at St. Paul's (where I work with the choirs). The bright quilt over the other end was made for me by one of the moms at the church who has two kids in my choir. Ben says thanks!!

- becca

Just some morning pictures

Doin' the dad thing

Here are some pictures of big daddy Mike doing the dad thing...

May 15, 2007

We have a date!

Not to jinx it, but they've told us a date. As in a date that Benjamin might be able to come home!!!!!

When we got to the hospital this afternoon the nurse told us that during rounds the doctors made a lot of decisions.

First, the general surgeon said he could come off the IV antibiotics and go on oral antibiotics. Yay! This seemed to be what was causing his IV lines to fail all of the time. Since he's not getting meds or nutrition through the IV anymore, the line will probably come out this Wednesday. Double yay!

Second, he will get his MRI this Wednesday which should tell us a lot more about the issues with his spine. He'll have to be sedated for that, which is no fun, but won't be nearly what he had for the surgery (i.e. no scary breathing tube). This is the last of his major tests and it will be a welcome relief just to know what we're dealing with.

Third, his next surgery will be when he is 12-pounds (or a little more). So, now we know. We had heard everything from a few months to a year.

And finally...the biggest and best news in the whole world. If he keeps gaining weight and there are no other complications, he can go home THIS THURSDAY!!!!!!!!!!!!!!!!!!!!!

We already have appointments with home health nurses and such who will show us how to take care of him. So, it seems like this is the real deal. We are almost in shock about it really. In the span of less than a week we've gone from fearing he wouldn't make it from minute-to-minute to the real, actual fact that he will come home with us. THIS THURSDAY!!!!!!

Our little radio-receiving baby

Just had to share with you a photo of our little Benjamin dressed up as a radio tower. Here is a picture of his IV when it was inserted in a vein in his head. Honestly, though, it was the most comfortable he's looked with the IV placement ever.

We were a bit concerned last night because they moved it back to his arm, but it blew out there. Then they tried to put it in his head again...twice. Both of those blew out. Then they tried his ankle and again the vein failed. Then then tried his hand again...twice. The second try finally took, but they were concerned that he wouldn't be able to complete his IV antibiotic treatments.

So, at about 11pm last night they contacted us for consent to insert a PIC line...which is basically an IV that creeps through the veins until it's close to the heart. Pretty scary idea, but relatively uncomplicated and safe. But, still....ugh.

Finally, after reviewing his charts some more they decided the "cost/benefit" to doing this, versus trying out the IV for two more days, warranted sticking with the IV a little longer. We were relieved. It's always something, right?

Seriously, what a little trooper.

First Bath

Here are a few pictures of Benjamin's first bath. He got it in the NICU at Good Shepherd just after delivery. His dad and grandma got to be there for the big event.

More birthday pictures

Here are some more birthday pictures - taken in the NICU at Good Shepherd before he was transferred to Lutheran General.

The mechanical womb

Here are some pictures of Benjamin's little home. From far away it looks a little scary, but when you look a little closer you can see how hard they try to make it cozy for him. They have little quilts and afghans for him. They sometimes dress him in cute little onesies. We can bring things for his bed like pictures or a mobile...we just haven't had time yet.

The little computer screen in the top left corner of the first picture is a torture device. It shows three little line graphs -- one is his heart rate, another is his breathing rate, and the third is his pulse ox (oxygen saturation). If any of these levels fall below a certain number, an alarm sounds and lights start flashing. You can't help but watch it constantly. The thing is, it will start alarming if you knock out a wire...or, as we've recently learned, when you burp him.

An unfortunate side effect of being around all these alarms is that now the microwave timer, or the elevator bell, or most any noise at all gives us little heart attacks.

Now presenting...THE HAIR

And now for the hair you've heard so much about (and a few other photos just because they're brilliant poses)...