May 30, 2008

Yay for Ezra!

Our friend, Ezra, did awesome yesterday and is now at home recovering. Keep praying for his discomfort to ease up and for things to keep healing.

So, let's see...what else can we tell you about friend Ezra. Well, his family lives only 20-minutes away from us. It's just so crazy that we've found a family so close by (and so sweet) that we can relate to with this VACTERLS stuff. I mean, it's just statistically impossible. The incidence of VACTERLS is .016% so to find anyone nearby, let alone another baby, is just incredible. Amazing. A gift.

There is nothing - and I mean nothing - like being able to talk to another person who knows what this is like.

We got to go to Ezra's birthday party just before Ben's tethered cord surgery and it was so neat. First of all, we didn't know anybody there and nobody there knew us...and nobody knew about Ben's cuckoobananas. For once we got to stand around and talk with people about what an amazing, incredible, miraculous, strong, brave baby this is - and we weren't talking about our kid. It was so neat to be able to experience that. A whole new perspective. Another cool thing was Ezra's parents put together a slideshow on their computer and had a photo album available...all the pictures from the day Ezra was born until the present. They delivered him at the same hospital we delivered Ben and then, as you know, he ended up at the same NICU. So, it was like watching our own life being lived by someone else...the same beds, blankets, nurses, doctors, medical equipment (the portable x-ray painted like a giraffe!)...but different family.

Talk about not feeling so weird and alone anymore!

May 29, 2008

May 28, 2008

We luv Ezra

Our little friend, Ezra, is going to the operating room this Thursday morning for several procedures. Would you keep him in your heart and prayers?



I don't think we've ever mentioned him here before. That's just nuts!

Oh gosh, I just keep writing and deleting stuff because there is so much to tell you about Ezra...what a total sweetheart he is...what great friends his parents have become to us...what a miracle Ezra is...too much. It's gonna take at least a few posts to cover it all. Here's my attempt at a one-sentence summary -

Ezra was born with VACTERLS, too, and we met his parents in the NICU and we have for sure been brought together for some amazing reason.

Okay, it was a run-on sentence, but whatever. Like Ben, he has been through numerous surgeries, procedures, and whatnot and has come through with flying colors. This Thursday is yet another one and we know he's going to do great. Please pray for his parents to experience peace and for Ezra to come out stronger and healthier...and ready for some more slobbery kisses from his buddy, Ben.
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May 26, 2008

A Memorable Memorial Day

We spent most of Memorial Day in Johnsburg, IL at Mike's baseball game...4 hours actually. Ben and his mom might not have agreed to go if someone had been more forthright with how long this thing would take. Ahem ahem. Hee hee.

It seemed no matter where we sat it was in "foul ball range" and too nerve-wracking for Ben's dad. (If you asked Ben's mom, it might be refreshing to make a trip to the hospital for something normal like a knock to the head.) So, Ben spent much of the day rolling around in the grass in places far, far away from the game.



We spent the rest of the time trying to find things that matched his bright orange shirt. Like...


Cones!





And a Model T! Haha.





Ben thoroughly examined every piece of that car. He even caught his mom off guard and dove underneath the car to take a look around. Thank god for his love of rocks because it took a few to lure him back out again. At least under there he was protected from being hit by a baseball, right?

May 25, 2008

This time last year...hanging out.

This time last year Ben was just hanging out and meeting people. It's so funny to go back and look at these pictures. You notice so many similarieties with how he looks now, but so many differences, too. Talk about a tiny baby! I mean, you know he's a little guy when his arms are so skinny they flop around inside a newborn onesie and we had to roll down the sleeves over an inch on the sleepers!



May 23, 2008

Managing cuckoobananas

The comments on the last post got me remembering some other funny things about managing cuckoobananas.

Well, for starters, when Ben had this last surgery it was the first official time I wrote "see attached" into most of the lines on the pre-op forms. Attached was the 4-page, abbreviated medical summary I keep for Ben. It includes a summary of each of his defects and treatments organized by specialist (neurosurgeon, orthopedic, urological, general, etc), a chronological summary of all major surgeries and upcoming tests, a list of medications and dosages, a list of all of the doctors we have consulted and their contact information, and a list of all radiology exams. That thing is like GOLD lemmetellya. I originally made it to help *me* fill out these forms. Those of you who know me pretty well know that I am NOT a person who can keep dates in my head. Every surgery starts with a bunch of paperwork. I have yet to see a pre-op form that allows for more than 4-lines in which to write down all of the past surgeries. Not enough space!!! I've somehow always managed to write them all in micro-handwriting...talk about hand cramp. This last time I just threw in the towel and wrote "see attached."

First our admitting nurse started scanning through our self-named "medical resume" and kept saying over and over, "Oh my goodness! Oh my goodness!" Haha. A while later Mike overheard the surgery residents outside the door going over Ben's medical history and he heard the one guy tell the rest, "...and they must have a great pediatrician. Check out this report she put together for them!"

Grrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!! Haha. Oh well. I get enough nurses telling me how awesome they think I am or hospital folks asking me if I work in the medical field that I will let that one slide for now. (In the future, Mike, stick up for your wife!)

Oh and I also bring along copies of every surgical report, discharge summary, and radiology report and CDs with images from every ultrasound, MRI, x-ray, and scan. Can I tell you how much the ICU med student on rounds wanted to make out with me? I swear he started jumping up and down and nearly peed his pants when he saw that medical resume in the charts. It always seems to be the med students and residents who get the most excited about these things. I've been told they're the ones who are usually stuck with the job of trying to sort it all out and report it back to the attending, so I basically save them a few hours of work. Hee hee. (A note to any med student or residenty type person reading this - chocolate is the best way to say "thank you"...not kissing or jumping or peeing in the pants - chocolate...or a rocking chair that doesn't squeak.)

So, really, since that first awful appointment with our pediatrician we've developed a wonderful relationship with her. I like to brag to my other VACTERLS friends that I can call the office and get whatever I want...

...same-day appointment (they know we're not going to come in for *another* doctor visit unless we really need it and I can almost guarantee we see that office less than most parents.)

...x-rays (his belly doesn't seem quite right and we get a KUB without even talking to the doctor)

...ultrasounds (let's rule out hip dysplasia, okay? okay.)

You name it, they'll do it. I just call and they tell me to come pick up the order. It's great! I told our pediatrician as much at our last appointment and she said - and BOY does this make me like her even more -

"Well, I just figure you know more about this stuff than I do. I mean, I know a lot, but not as much as you."

How scary is that?! But that's the world us "chosen ones" live in...a world where instead of bringing our questions to the pediatrician, we teach them how to care for our children.

May 22, 2008

Last year...first pediatrician visit.

This day last year was Ben's first trip to the pediatrician's. A big day for any new parents, but we'll especially remember it because it was the first we were told about his diagnosis - VATER.

We weren't really happy with our pediatrician after that visit. There were a number of reasons, but looking back it's clear that many of them weren't her fault. She was 9-months pregnant herself and seemed to have some sort of head cold. She wasn't very friendly. She didn't answer many of our questions, but instead told us to ask this surgeon or that surgeon. Then she dropped the bomb on us - "So, did they explain his diagnosis to you at the hospital?"

No. We didn't even know he had a "diagnosis" really. We just knew he had a long list of birth defects.

When we left that appointment we realised that our pediatrician wasn't really in charge of Ben's health. We were sort of bitter about that...shocked...scared. Seriously, were WE really supposed to keep track of all this stuff? We were responsible for making sure all the right tests got done? Check-ups got scheduled? Things about body parts we couldn't even pronounce got taken care of???

Certainly we weren't qualified to do all that. Surely there was someone out there whose JOB it was to manage our son's health.

But no. The fact is, your pediatrician is in charge of taking care of a healthy baby. The general surgeon is in charge of this part, the orthopedic surgeon in charge of that part, the urologist does this, the nephrologist does that, the cardiologist only looks at the heart, the neurosurgeon does his thing, etc, etc, etc.

The really scary thing is that if you, the parent, don't pursue medical treatment that's the end of it. They don't pursue you. It was unthinkable at the time. Just to give you an idea...we left our original general surgeon's office after a follow-up appointment with the instructions to contact them again when Ben was 12-pounds so they could do the surgery. We never called. We never went back. They never heard from us again and we've never heard from them. For all anybody in that office knows, we are crack addicts who decided to buy drugs instead of getting our child's colostomy reversed. The same with our nephrologist. We left the hospital after the UTI treatment and never called again. For all he knows our son is in renal failure. It's simply not their jobs.

When you have a child with health problems like these, YOU are in charge. It's more like the relationship you have with your mechanic. You take your car in for an oil change and they tell you when the next one is due. If you don't show up, they're not going to call.

May 21, 2008

Last year...napping.

When I go back and look through our pictures from this time last year, I see that I was somewhat enthralled with Ben yawning. I swear half of the pictures are of him yawning. Heh heh.

We got this sleeper bed from our friends and boy was it used. We plunked it down on the coffee table during the day and kept it in our bed at night. It had a little nightlight we could turn on to check him out in the middle of the night.




I guess I thought him crying was pretty cute, too.


May 20, 2008

Last year...being home.

This time last year we were having fun just watching Benjamin sleep. All new parents know how fun that is. Hee hee. Every little movement is exciting.





We slept so much better once he was home. We were so on edge when he was in the NICU. Every noise was startling. Even the beep of the microwave would have us looking for a monitor to check on his respiration rate. Every time one of our phones would ring it was instant chaos...searching for the phone, trying to press the answer button with trembling fingers expecting it to be the NICU. One night at the hotel one of us knocked a bottle off of the nightstand and the noise got us both out of bed with hearts racing.

Once he was home all of that went away.

May 18, 2008

This year...in the yard.

This time last year, Ben met the yard for the first time. Okay, we are such dorks...check this out! Hee hee.






What a difference a year makes!






Last year...home!

Last year at around 5:30 p.m. on May 18th we brought Benjamin home.




This time last year...going home!

One year ago today was Ben's NICU birthday; the day he was born from the mechanical womb. This was the day we finally got to bring him home from the hospital and he really, truly finally became our baby. His stay in the NICU was short compared to lots of other babies, but it sure felt like an eternity.




Towards the end it seemed like test after test after test was keeping him there. Each test had its good news and bad news. We were really good about seeing the glass half-full, but to tell the truth it's exhausting after a while. You try having someone tell you your child has a spinal cord problem and may never walk and then try to put a positive spin on it. Somehow we did, though.




Yes, just like another NICU mom said in one of the comments it was so difficult to feel close to our son. The whole experience causes one to feel detached...and then to feel guilty for feeling so detached. Sure it's some sort of defense mechanism the mind uses to protect us from going insane, right?

Last year we spent most of the day diligently learning how to care for our child. We learned a diapering routine for the so-called "bagless colostomy" that took 11 different supplies and 10 steps to complete. We learned how to give medications. We were given a list of 6 different follow-up appointments we were supposed to schedule. We were told his next surgery would be when he was 12-pounds. We still couldn't believe our baby would have 3 surgeries. Can you believe he's ended up with 6??

Our nurse that day pulled out all the stops to get us discharged. She was on the phone constantly checking on test results, pushing reports, and lecturing a couple of our doctors. She made it her goal to get us out of there before her shift was up and she did it.



What was really shocking was how he suddenly went from being a baby with every little twitch monitored to just being...well...a baby in a carseat and going home.


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May 17, 2008

Last year...not going home.

This time last year we did not go home after all. We were so disappointed. We had been looking forward to this day like nothing before. Unless you've had a baby in the NICU you just can't understand how totally useless you feel...helpless...how it feels like your visiting someone else's baby. You have to ask to do anything. Every diaper, every cc of drink...absolutely everything is measured. We could never have been prepared for parenthood, but we certainly never expected to have to ask permission to feed or hold our baby. A year ago today we left our son at the hospital again. If we had known him then like we know him now, we would never have been able to stay away like that.

May 13, 2008

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Then and now...NICU blankets.

For anyone who has never seen the inside of a NICU, well, it's pretty cold. They do their best to make it seem baby-ish, but there's no hiding all the medical equipment, monitors, IV poles, medicines, and the truth of it all - sometimes babies are very, very sick.

One thing really warmed things up for us - a baby blanket. One day when we arrived we found Ben under a cozy little crocheted blanket and somehow that blanket made him seem, well, more like a little baby and less like some lab experiment.





When Grandma Linda saw that blanket she went into action. She has always been into crocheting - her most prolific work is probably halfgans, otherwise known as afghans that only get half-made. Haha. (Sorry, mom!) She asked the nurses where the little baby afghans came from and if they needed more. Sure they did.

Because only 2 people were allowed at Ben's bedside at a time, Grandma Linda spent hours and hours and hours in the NICU waiting area...which might be one of the most depressing places on earth. When we went home that night, Grandma Linda assembled all the supplies she would need to start making blankets...what she now calls "NICU blankets." She sat in that waiting room and made blanket after blanket. She also chatted with lots of people there...moms, grandmas, dads, aunts.

When Ben was in the NICU there was a family there whose baby girl was very, very premature and was not doing well. She had been in the NICU for at least a month at that point. Her family got a call at 5:00 a.m. and it's NEVER good news if they call you that early. Their daughter, Isabella, was dying. Her organs were failing and her family was called to come be with her. Grandma Linda got to know pretty much everyone in Isabella's family, especially her grandma. She told them about her NICU blankets and how she said little prayers and blessings with the stitches. Isabella's grandma and aunt wanted to help, but didn't know how to crochet. Grandma Linda showed them how, hand-on-hand, and they put a few stitches in together. When the blanket was finished they all marched up to the NICU reception desk and donated the blanket. Isabella somehow pulled through that terrible time, but sadly she died later that year around October.

I swear by now Grandma Linda has made a couple dozen NICU blankets. She gives them away to anyone with a baby who has been in (or still is in) the NICU. A few weeks ago Ben visited one of his NICU nurses and turned over a bag of blankets. Maybe there is a family walking into that NICU right now pleasantly surprised to find their baby lying under a warm, loving little blanket.
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May 12, 2008

Mother's Day last year

Mother's day last year was...hmmm...weird! Haha. It was more than weird, of course. When we got to the NICU that morning they were giving our carnations to all mothers. That was really nice.

That Mother's Day I got one of the best presents I can imagine. Ben ate for the first time through his mouth. It was three days after his birth and he was finally eating. What a relief.




We got to hold him and feed him and burp him and we simply delighted in it all. Unless you've experienced a NICU, you have no idea how good it feels to finally do something - anything - with your own baby. Up until this point we had done nothing more than hold him and even holding him was a feat that involved several people to help move wires and tubes and whatever. So, getting to feed him, do something to nourish him, was just too exciting.
The other big, wonderful present I got for Mother's Day last year was to finally try out breastfeeding. One of the NICU nurses helped arrange it. Yes, that's right - arrangements had to be made. Ben was in a large room with nearly 12 other babies. It wasn't exactly private. The nurse asked me to come back at 6:00 p.m. It was a date...isn't that weird?
When I came back for our date, there were several portable screens set up around Benjamin's bed. Behind them, the nurse had put the best rocking chair in the NICU. Unless you've done the NICU thing you cannot possibly appreciate how exciting it is to get the chair...the one with all of the cusions and no stains, etc. I was on a fancy date, eh! Haha. Finally, finally, finally all of that wretched pumping had paid off. The wonderful nurse stayed with me the whole time, coaching and giving tips. Gosh was it a moment.

1-year check-up

Ben had his 1-year check-up with the pediatrician today. Those visits are pretty benign. First off, you know it can't be too exciting when we don't have to provide a link here for more information! Haha. Our pediatrician usually spends most of the time saying, "God luvya" over and over again. She started out by asking us what's happened since the last time we were there - February. Heh heh. Well, let's see...

An MRI that showed a tethered cord and a syrinx
A visit with a new orthopedic surgeon who told us he has vertebral fusions in his lumbar spine.
A trip to the OR for a cystoscopy and to place a urinary catheter.
A urodynamics evaluation that showed he has a neurogenic bladder.
Another trip to the OR for another cystoscopy, catheter and spinal cord surgery.
A test for Fanconi Anemia.
An abdominal xray.

Busy spring, no? Heh heh. Other than all the fervent note-taking by our pediatrician, it was just your normal 1-year check-up...length, weight, head circumference, shots.

Head circumference: 45.6-centimeters (50th percentile)
Length: 29.25-inches (55th percentile)
Weight: 20-pounds (15th percentile)

The weight thing was a tad concerning, but she assured us that it's no big deal. As long as his length and head are progressing the slow-down in weight gain is probably due to his increased activity. Okay!

They also tested him for anemia. Grrrr. OF COURSE we don't get off the hook on this one. Yeah, so Ben is anemic. He'll need to take vitamin supplements daily (big deal...) and then get another blood test in a few weeks. Hey, we'll take this kind of anemia over Fanconi Anemia any day. I see liver in his dietary future...heehee.

In other random news, we've sort of recently remembered Ben's cardiologist mentioning that doing another echocardiogram might be a good idea. It was in the context of his-heart-is-perfect but we could do this just for peace-of-mind. We're all for more peace-of-mind over here that's for sure. We've gone back to look at the radiology reports from the echocardiogram he had there in the NICU and it mentions "tricuspid insufficiency" but "otherwise normal anatomy and function." Sooooooo, probably not a big deal at all...an echocardiogram is a simple enough exam...and peace-of-mind is absolutely priceless.



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This time last year...blog launch.

This time last year - well, actually it was on May 11th at 1:44 a.m. - we launced Ben's blog. We had gotten home about an hour earlier after that first surgery and horrible drive with no baby in the car seat. We were so glad to see our home and our cats. We were really on edge. We knew we needed to let people know what was going on, but we also knew we didn't have the time or energy to contact everyone...and obviously Becca wasn't able to hold it together on the phone. Haha.

Internet to the rescue!

We set up this blog long before Ben was born just for the purpose of sharing photographs with friends and relatives who lived far away. Boy did this turn into something else. Late that night (or early that morning) we started writing down the scraps of details we could remember and shared them on the blog...

"In a nutshell, he's absolutely, ridiculously beautiful and horribly, terrifyingly sick."

We sent out emails to our friends and family later that morning at around 9:00 a.m. People started responding almost immediately. A former coworker shared her cousin's story, friends told us about their rough starts in life, and people sent their love, help, and prayers. Unless you've been there, and we really hope you never will be, you won't have any idea how much all of that meant.

May 11, 2008

This time last year...learning.

On May 11th at about 5:30 a.m. I woke up and could not fall back asleep. So, I wrote.

I wrote this post and it was so difficult. Mike must have been awake, too, because I remember reading it out loud to him to make sure he thought it was okay. I couldn't get through the last paragraph about "news so good" because, well, it was just so good. It seemed unfathomable that we would take him home in a week. We had sort of mentally prepared to just move to the hospital. Seriously! We were pretty sure he was going to be there for years or something. A week?!

The last time we had seen him he was still intubated from surgery. A large plastic tube was in his mouth and his chest rose and fell in an abnormal way. Mike called the NICU just about every 15-minutes all morning to check on him. I never did get up the nerve to call. Well, that's not true, I did get up the nerve to call several times. I dialed the number, listened to the phone ring, and then hung up when someone answered. Nope, I wasn't too good on the phone. Haha.

Every time he would call he'd get a status update about Benjamin's breathing..."He's at 10% now"..."He's breathing 25%"..."He has taken over 45%"..."He's back down to 15%"..."He's up to 30%"..."He went back down to 20%"..."He's at 55%"..."Now he's breathing 70%"..."Down to 60%"..."Up to 80%"...

And then finally, "He's been breathing 100% on his own and we're extubating him soon."

What a relief!

Happy Mother's Day - The Chosen

THE CHOSEN MOTHERS (and fathers)

By Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?


Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.


"Armstrong, Beth, son, patron saint Matthew.

Forrest, Marjorie, daughter, patron saint Cecilia.

Rutledge, Carrie, twins, patron saint Gerard."



Finally, He passes a name to an angel and says, "Give her a child with cancer."


The angel is curious. "Why this one God? She's so happy."


"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."


"But, does she have patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."


"But, Lord, I don't think she believes in you."


"No matter, I can fix that. This one is perfect. She has just enough selfishness."


The angel gasps -"Selfishness? is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."


"And what about her patron Saint?" asks the angel, his pen poised in mid-air.


God smiles, "A mirror will suffice."

This time last year...a different picture.

On May 10th at about 9:00 p.m. the surgery team did rounds. When the attending surgeon examined Ben she didn't like what she saw. His stomach was becoming distended and he seemed to be in pain when she pressed on it. Surgery was scheduled for the following day, but at the urging of Mike she decided to do it that night.

An actual line of people formed at our son's bedside - surgeons, nurses, anesthsiologists, radiology technicians, etc - everyone needed to examine him and do different things to prepare him for surgery.

This was the chest x-ray taken.



We were able to stay at his side until they took him off to the operating room. The surgery resident told us, "Okay, time for goodbye kisses." Didn't she know we don't say "goodbye?" It was the first time we would see him being taken for surgery. It was a horrible feeling.

It was probably around 11:00 p.m. when they finally took him and our family and friends were there in the waiting room. We were all prepared for a long night. The waiting room phone rang after a few minutes and we were asked for verbal consent to do an epidural for pain management. Of course we consented. It turned out that they chose not to do an epidural, and thank goodness, because he has vertebral defects. The surgery only took about 45-minutes. We were shocked to say the least. Mike's brother exclaimed, "That's IT?!" Haha.
We drove home that night with an empty car seat and, well, that was rough. During that drive I remember crying and thinking that if this was how bad I felt now, I was definitely going to lose my mind when we got home...surely an empty baby's room would be far worse than the empty car seat. Turns out it wasn't. We got home and it was...home. It was comforting. It was just as we had left it the day before and it was as though the house was still expecting him...waiting for him.

May 10, 2008

Right now...beddy bye.

Just now I got to rock Ben to sleep. He was a snotty mess and there were no nurses around to scold me for snuggling him against my shoulder and rocking with him in the chair. There was no hand-washing. There were no wires and tubes to navigate. There were no monitors bleeping in the background. There were no doctors rounds to kick me out of the room.

What a difference a year makes.

Right now...fighting a nap

Right now Ben is so tired he can't even sit up without falling over but he's fighting off a nap like nobody's business.

Last year...we meet again.

Before I got to Ben's hospital Mike and I were almost constantly on the phone. He spent probably as much time updating me about our son as as he did updating me about how upset this person was or how that person reacted when they saw Ben. Isn't it strange how concerned you can be about other people when you're in the middle of your own crisis? I remember telling him - and I laugh a little when I think of it now - that under no circumstances was there to be any such drama around me...that he needed to make it clear to any visitors that there was to be no drama and no hugging! Haha. I still wonder how he was able to deliver that message...("Uhhh, yeah, so no more being upset and no hugging becca and if you can't follow the rules you have to leave.")

When we got to the hospital I went straight to the NICU...didn't stop at the bathroom, didn't stop in the waiting room, didn't put my stuff down, nothing no stopping. I ran into my father-in-law just inside the doors to the NICU and he looked like a deer caught in the headlights. I think he would have run away if he could. I think I hugged him and walked off. (So, I guess a bylaw of the rules was that becca could hug you but you couldn't hug her, right? Haha.)

I entered a brightly lit, quiet room full of isolettes...probably a dozen. I would later understand that this unit, or "pod" as they called them, was one of the high-level ones. Most of the other babies were micro-preemies that made a 2-lb baby seem big, so our 5lb 14oz baby was GI-normous. I remember at first thinking "these babies look like goners" and then suddenly realizing maybe our baby was just as bad off. Over the next few days we would periodically get kicked out of that pod when they needed to resusitate a baby. That was some scary #&$@.

Ben's isloette was in the far corner. He was all hooked up - an IV in his arm, monitors on his chest, a pulse-ox meter on his toe, and a nasogastric tube up his nose. I know the words for these things now, but at the time they were just tubes and wires. He was very still and, frankly, the whole thing scared me. I started crying. Mike asked me if I wanted to hold him. Of course. He got a nurse to come over to help. She told me that I would need to wash my hands again because I was crying. I did. I sat there with him in my arms and just couldn't stop the tears. The nurse was hovering there telling me that I really needed to keep "bodily fluids" off of our baby. She grabbed some tissues and tucked them under my shirtsleeve in the hopes I would wipe my face without using my hands. I don't think I've ever felt so germy in my life.

After a few minutes the NICU lactation consultant showed up to demonstrate how their pumps worked. She asked me if I wanted to come with her to the pumping room or if I wanted to stay at the bedside and she would bring a pump to me. I said, "Well, that's a no-brainer."

This time last year...friends.

At about 11:00 a.m. my friends showed up at my hospital. They drove from my hometown in Ohio. It's an 8-hour drive and...well...you do the math. Good friends.

I remember thinking how timid they seemed when they came in - like they didn't know what to expect or how to be. I told them I didn't want any hugs, please. I'm pretty sure my friend, Andrea, who is a social worker, was prepared to get me committed if needed. Isn't that sweet? Hee hee.

The hospital kept me on the diabetic diet and it was making me crazy. I had really motivated myself to get through that diet by telling myself I could eat my Easter basket after our baby was born. I had even checked with my OB ahead of time to make sure it would be okay for me to eat it after that baby was out. Yes. So, I had an Easter basket packed away in the trunk of our car. I had enlisted Mike to hide it from me for all those weeks so I wouldn't be tempted to eat it. It was also his job, under penalty of divorce or bodily harm, to make sure that basket got to the hospital with us. Guess where that basket was? Yeah, still in the trunk and miles away at another hospital. Bugger.

The phone rang and I answered it thinking that it was probably Mike with some news. My cell phone wasn't working. Perfect timing, right? Well, instead of Mike it was one of my church choir members who works at the hospital. She had noticed my name on the intake list or whatever and had called to check in. Sweetest woman. I started off the conversation just fine, "Oh yes, we had the baby. I'm great! There was a problem..."

I lost it. I mean really lost it. I'm sure I gave her the fright of her life. One of my friends took the phone and somehow explained what was going on. (Sorry Linda!)

Soon after we left the hospital and headed to Target. Target you ask? Yes, well I had a shopping list of items I need to buy, of course. I had emptied one of those diaper bags the hospital gives out (full of formula, I might add) and I refilled it with all of the personal items I would need to take care of myself. Any woman who has had a baby knows that your bathroom routine is a little...erhmm...interesting in those first few days. (Sorry, dad...Tony...Andrew...Mike...guys in general!) So, that's what all was in my diaper bag instead of diapers.

At Target I probably spent an hour pouring over which binder to buy. A nurse, who had a preemie baby herself, kindly suggested I keep a log of everything in a notebook. Little did she know what sort of note-keeping monster she had created. I got a notebook, pain reliever, a breast pump, and other junk. Then we went to the AT&T cellular store, actually I think it was Cingular at the time, to see about getting my phone fixed. It just needed a new SIM card. My friend, Christina, still teases me about how I gushed on to the guy there about, "You have no idea how much this helps."

Well, he didn't. I mean, there's nothing quite like having your cell phone broken when you've just had a baby and you're waiting to hear back about his major organs and stuff.

Soon after, Mike called to tell me what the cardiologist had said about the echocardiogram - "his heart is perfect."

May 09, 2008

A year later...Lutheran General


This night a year ago was Ben's first night at Lutheran General, his first night in a hospital...heck, our first night in a hospital. It sure wasn't our last!

Here are pictures of Ben at Lutheran General nearly a year later. They have a huge train play thingy. He plays here every Tuesday either before or after physical therapy.




This time last year...pumping.

A lactation consultant showed up in my recovery room at some point. She brought a pump and basically said it was going to be very, very difficult to get a milk supply going without a baby around and I probably wouldn't be able to breastfeed. She recommended putting his picture on the pump. She recommended watching TV. She was cool, but not in the good way.

I remember being so sad that I was sitting there with this contraption instead of my baby. I had really looked forward to breastfeeding. During my pregnancy, there were several people in my life who were really, really laying it on thick about the importance of breastfeeding. I read all the books I could find. I read about how you should breastfeed within the first minutes of birth. I read about how it's so good for a baby and protects it and makes it smarter and keeps it healthier and so on and so forth. And there I was with some plastic contraption and a couple of polariod photographs.

And my baby was out there somewhere with this horrible birth defect and something wrong with his spinal cord and his spine growing like a winding staircase and probably only one kidney, if that, and who knows what else wrong.

So, I set my phone timer to go off every 2-hours and I pumped because I had nothing better to do. This was at least something I could do.

Now...where did the cake go?

video

This was followed by a thorough bath!

Happening now...Mmmmm.

Mmmmm...cake is good!

Happy Birthday!!!

This time last year...bad news.

At this time last year, the evening of your birthday, you were getting lot of tests...xrays, ultrasounds, echocardiogram, blood tests, etc etc etc.

An ultrasound of your spinal cord showed a problem. A doctor explained your spinal cord was "tethered" and that you "might never walk" and might have other problems.

A nurse told your dad, "You're going to hear lots of things from lots of different people."

She was right.

An x-ray showed that some of your vertebra were only partially formed. A doctor described it to your dad as it causing your spine to grow like a "winding staircase." What a stupid analogy.

Your mom went into a state of hyper-organization. She made list after list and rearranged her hospital room probably 3 times. She wandered the halls and peered in the windows to the nursery. She was really trying to hold it together. There wasn't a single person, not a nurse or a janitor, who didn't treat your mom with compassion and sensitivity.

You got to meet your Grandpa Wuhwuh (Dennis) and Grandma Judy. Your Grandma Judy convinced a nurse to unplug you for a bit so she could bring you over to the window in the door so your Uncle Tony and Great-Great Aunt June could see you. I hear it was quite a moment. You slept a lot.

This time last year...phone tag.

I've done my best to piece together how the news of our son's birth spread. It's pretty nutso.

I know I text-messaged Christina. She called April, who called her husband and my brother-in-law, Tony. Tony called his parents and got the news from them (I assume he bolted out of work)...relayed the news back to his wife who then told my friend, Christina, who told her sisters and family. Christina and her family started making plans to come visit us immediately.

Remember how I told Mike to call St. Paul's? For those who don't know, St. Paul's UCC is the church where I had the pleasure of conducting choirs for two years. Why call them? I don't know...lots of reasons and most of them are pretty sad. I think, basically, I knew Ben would need some serious prayers. I will also admit I thought he might die. Well, Mike called and left a message - good grief that must have been some crazy message! By the time it got to Pastor Greg I don't think it was clear what was going on...if I was okay, if our baby was okay, or what. He called Linda, who had organized a baby shower for us at the church, so she knew some contacts for our family. Linda called April.

Poor April got stuck in the middle of the phone tree cuckoobananas! But if anyone can handle cuckoobananas, it's April.

A few others knew we had gone to the hospital for induction so by this point they were getting curious and called Mike. Earline was one of them. She spoke to Mike and then called her aunt, June.

So, this was how Mike, his parents, his brother, his Great Aunt June, and Pastor Greg all ended up at Lutheran General Hospital that night.

This time last year...you left.

The transport nurse, Cheryl I think was her name, asked us if we had a name picked out for him or if we wanted him to be admitted as "Baby Boy Batey." We had a list of names that we figured we would leisurely peruse after his birth...you know, because we'd have nothing better to do while we lounged around at the hospital for a couple of days recovering and receiving visitors and such. Haha. I blurted out "Benjamin?" and looked to Mike for agreement. He nodded. At that point, I probably could have told him to do anything and he would have agreed to it without question.

We signed lot of forms. Consented to this and consented to that. Agreed to blood transfusions and whatever else. Rattled off answers to this and that question.

Shortly after 3:00 p.m. they put him into this isolette on an ambulance stretcher and we watched as they rolled him out of the room.



We went to our recovery room and I thoroughly unpacked and repacked our bags so that Mike could follow Benjamin to the other hospital. I remember giving him a pep talk about how he didn't have to do anything but be a dad...talk to our son...cuddle with him...love him. Mike called his parents at some point and they probably beat Ben's ambulance to the next hospital. I can only imagine what their drive down Dempster was like. Mike left in our car. I'm still not sure how he managed that drive alone.
There was some sort of meeting or prayer group or something at St. Paul's this night and I'm pretty sure Ben's name was mentioned. Haha.
I didn't take pictures again until May 13th.