Nicu

Being sure.

I think about the conversation nearly every day.

The seemingly scatterbrained geneticist with her big huge textbook on chromosomal trans locations. 20 hours earlier we heard the word lissencephaly for the first time. Only minutes earlier we heard the term Miller Dieker Syndrome for the first time. Karin and I sat nervously on the NICU “family room” couch. A two week old Liam lay in his isolette 30 feet away.

“I have some here if you’re sure you want to see them ” she grasped the textbook and slid her fingers to the page marked by the post it note sticking out.

“See them?” I asked. We were talking about chromosomes. We were talking about my son. About “abnormalities. About life expectancies. I didn’t need to see charts or molecule diagrams at that moment.

“Well, pictures of other kids who have the same diagnosis. So you know what your son may look like due to the syndrome. If you think your OK with seeing them I can show you some pictures of children up to a few years old. ” she said it just like that. Clutching her book and waiting for us to decide, as if what were about to see would have us heading for the hills.

I don’t have any idea how hard it must be to be a geneticist who’s job involves telling brand new parents the kinds of things that are “wrong” with their kids. Things that, though could not have been prevented, bring tremendous guilt since it came from within themselves. How difficult it must be to choose your words. To decide how to frame the conversation without setting expectations too high or low. I don’t envy her position in this.

Karin and I looked at each other for a second both nodding that we were ready for whatever we were about to see. We grabbed each other’s hands and told her we would like to see the pages.

The geneticist opened the book first to herself and then turned it around toward us. We looked on in silence. Looked back at each other and back toward the book and its pages again.

” I’ll leave you two alone for a few minutes to look at the pictures and I’ll be back to answer any questions you may have.” She excused herself without a word from either Karin and I who had now flipped through the four page textbook entry that included about a dozen photos.

“Uh,…” Karin seemed to be choosing her words carefully. “Um, what am I missing?”

I knew exactly what she meant.

“These are the cutest kids I’ve ever seen! Why did she make us decide if we were sure we wanted to see this. What am I supposed to be seeing here?” She said with relief in her voice.

“Well it says here, pronounced forehead, shortened nose, widely set eyes. I don’t know, they look like kids to me.” I said.

I remember laughing. Us both laughing. After twenty hours of mostly tears we had no idea what our future would hold. We had no idea what a life with a Miller Dieker kid would be like. We had no idea if Liam would even make it home from the hospital.

But we still knew what was funny.

And when a scatterbrained geneticist worries you into thinking your child’s head is going to end up growing inside-out but then shows you pictures of a bunch of adorable two year olds, well …that’s funny.

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I think about that conversation nearly every day.

Whenever I see a picture of Liam and marvel at how incredibly adorable he is.

Whenever I look at him and marvel at how handsome he is.

Whenever I’m amazed at how I could have possibly had any part in making something that looks so …

Perfect.

And now I ask you, are you really sure you want to see them?

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153 Days 197 Weeks Ago

Among the lessons that Liam has taught me is that if you are open to it the universe will amaze you with its timing.

I’m writing a speech about our story. Wait, let me start at the beginning, after writing an essay to apply and being interviewed by a recruitment committee I was asked in December to join the Women & Infants Hospital – Hospital Wide Advisory Council for Patient and Family Centered Care. You may recognize the hospital name since it is the hospital where I am employed but more importantly and the focus of my application essay is that it is the hospital where Liam was born and spent his first 153 days in the NICU. This is an oppurtunity to work with the administration and faculty as well as former patients or their family members to craft policy to support patients and their families and I could not be more excited about it. I am truly humbled to have even been asked.

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Last month after hearing one of the council’s founding members (It was founded in 2007) give her own patient story, the call for volunteers to give their own stories went out and me all ginned up on new-found self-confidence (thanks a lot fatherhood, and supportive blog readers) I answered the call. So next Thursday I am on the agenda. After opening remarks by a senior administrator of the hospital I will give my first ever Powerpoint presentation. I get to tell Liam’s story.

I get to tell our story.

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I’m not nervous about it since I have a pretty good grasp of the material. If anything, I’m nervous about having too much material and going on and on and on. Believe me, you get me going about my family or about hospitals and boy can I ramble.

With the meeting now about 9 days away I’ve really been trying to think about Liam’s time in the NICU and what I could take away from it that would be pertinent to a Family Centered Care Council. What better time than this morning then to receive the most wonderful email from the hospital’s patient liaison. Apparently she had found something I would like on her camera’s memory card. A whole bunch of photos she took on a very special day.

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She was thoughtful enough to take pictures of us on the day that Liam came home from the hospital. Pictures of us fighting our way through the crowd of my co-workers and boss and even a hospital vice-president wishing us luck, of my parents swarming us before we could come anywhere close to the door, of the host at the podium and how excited she was to be the one to discharge Liam, and of my reaction to the day. That one is my favorite photo given that in my recollection that whole day was a blur anyway.

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Look how far we’ve come.

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She didn’t know I was writing my speech at the time, and she had no idea how valuable they would be to my mindset, and recollection, and to my Powerpoint presentation, she just sent them because she found them, with a note reading “Sorry it’s been so long in coming…”

There’s no apology necessary Evelynn. They came right when they needed to.

A School, A Speech, A few Short Breaths

While complaining about medical supplies I neglected to fill everyone in on the other, more exciting, goings on here at Pressure Support Central. Sorry about that.

School

I mentioned it on Twitter but didn’t go into too much detail. Karin, Liam, Liam’s nurse and I got ourselves up early the other day to go check out what will become Liam’s school!

While he won’t be attending in the true sense for another 17 months, Liam will be going to his school for his therapy services starting in January. So we met the therapists, and social workers in the school. January may seem a bit far off for meetings to start now but disclosure forms need to be filled out including one form that when Karin asked what it was for was told by the social worker that she wasn’t authorized to talk about it until it was signed.

Huh?

It’s fine, lucky for me, Karin can read.

Anyway, we’ll all meet again in a few months to formally start an IEP and make sure that this particular school will be able to accommodate Liam’s needs. Within minutes it was apparent that the education system we will need to navigate through is a different world from the medical system we are used to and comfortable with.  It feels like starting over.

Speech

I mentioned a few posts ago the speech I was asked to make. Well it went great and didn’t actually turn out to be a speech at all. Instead of a formal “speech” I ended up less formally “speaking” to a group of  new nurses, CNA’s, lactation counselors, pathology techs, and unit assistants for close to 2 hours about Liam, Liam’s hospital stays, and life at home. I answered questions about how the people doing their jobs while Liam was there effected our lives.  The good and bad. I brought pages of bullet points which came in handy and kept me on topic but any fear of public speaking evaporated almost instantly when I started by bragging about my incredible wife and son. What’s cooler than that?

I’ve been contacted by other people in the hospital who were not in attendance but had heard about it and this probably won’t be the only chat I’m asked to give. It has been suggested that I possibly help by meeting with and talking to NICU fathers and families. I’m excited about that. Working in the same hospital as the NICU we spent so much time in comes with it some complicated emotions, frustrations and privacy issues. Being able to help the NICU staff and families is all that I’ve got to turn some of those frustrations around.

Now it’s time to start figuring out how to get paid for this work. I’m all about helping people but diapers ain’t cheap people.

Short Breaths

Now on to the really exciting part. VIP clinic this week. After explaining to the pulmonogist that we would like to start testing Liam’s strength sans ventilator she responded with an eagerness and excitement that Karin and I weren’t expecting.

“Yes, yes, yes! If you two think we should try it then we should!” she said. “but rather than having it be a piecemeal attempt let’s truly go for it and issue orders so that your nurses have to support this and help.” (I’ll mention here that nurses are unable to do anything unless there is paperwork signed by a doctor explaining its benefits. This includes giving vitamins, giving chest PT (a gentle patting on his chest and back ( I love parenthesis inside of parenthesis)) and brushing teeth) SO orders have been written and are now in his file…

10 minutes twice a day. Liam breathing on his own and without the support of a ventilator! Doctors Orders.

On his first try he made it 3 and half minutes before secretions (read – drool and spit) started clogging up his airway but 3.5 minutes is better than none. Our lungs are muscles after all and Liam’s have been coddled for far too long. (I kid of course) Liam will continue to grow stronger and stronger and we can only hope that in the near future we’ll be able to keep him off of the vent for significant portions of the day and hook him back up only to sleep.

But for now I’m over the moon about 3 and half minutes. A father couldn’t be prouder than I have been all week.

This kid of mine.

Anyway, that’s all I’ve got for now. The garden is growing well, as are the hops. I’ve got ingredients for a new batch of beer that I’ll brew on Tuesday (hopefully) but I’ll try and put all of those things into a post of their own.

I’m supposed to be writing a speech

I’m supposed to be writing a speech.  I was recently asked by a commitee in the NICU where Liam was a patient to give a speech and answer some questions in order to help educate new NICU staff so they are able to appreciate the contribution that they make to families. Also to give the father’s perspective which is sometimes a little lost in a hospital named Women & Infants, but in a long term NICU stay the fathers are also effected and need support. In two days I’ll meet with a bunch of staff to give them the parents side of time spent in the hospital.

I’m not sure that I’ve ever mentioned that in real life I’m a food & nutrition manager in said hospital. It’s a situation that can at times be rewarding in that it keeps me close enough to help families effected by complex medical needs yet can also be suffocating in that I can never really escape the role of NICU dad. Running the cafeteria kept me fairly anonymous in the hospital — being the father to Liam did not.

But all of that is another post for another day.  I don’t have time to get into that right now.

I’m supposed to be writing a speech.

So I guess I don’t have time to blog about our trip on Friday to Dream Night at Roger Williams Park Zoo. A wonderful program at zoos around the world, Dream Night brings children with special needs, their families and their caregivers together for a private night at the zoo that is more intimate and interactive than any zoo experience I’ve ever seen.

With the height of Liam’s wheelchair and his compromised vision, the zoo on a normal day can be a difficult place to engage Liam. He’s not really going to notice the zebra or elephant 30 yards off in the distance. But at Dream Night, which is held at a time when the zoo is normally closing and with a limited attendance, Liam can be set up to see feedings of those big animals that are usually difficult to get close to. All of the photos in this post were taken with my cell phone just to give you an idea of how close we were allowed to get to some of these animals.
Last year we attended Dream Night but if I recall Liam slept through most of it and we saw little if any recognition when he was awake that he had any grasp of what was going on. This year though Liam stayed awake and alert and got only slightly fussy when his father kept inadvertantly turning the stroller and lifting its visor to nearly blind him with the light of the setting sun.

 

On Dream Night Liam was able to roll right up to zookeepers on hand with hedgehogs, owls, snakes and other creatures out of their cages and calm enough to be touched.

If I had time to blog tonight I would tell you about the south american porcupine that came really close to crawling right onto Liam’s lap before its keeper came in to stop her.

But I don’t have time tonight because I’m supposed to be writing a speech.

 

So since I’m writing a speech tonight I also don’t have time to tell you how amazingly well our Liam the Lion Fund Kickoff Spaghetti Dinner and Silent Auction (just kind of rolls off the tongue doesn’t it?) went yesterday. The turnout was incredible and everyone who attended showed us so much generousity and support that Liam will be riding safely around town in his wheelchair accesible van in no time.

I wish I had more time for blogging amongst all the speech writing that’s going on around here because I would use this space to thank the people who gave so much of their time and effort to make it such a success like my mom and dad and Karin’s mom and dad who were there to help set-up the event room and auction. My Aunt Donna, Aunt Carol, Brian, My Nan, and sister’s friend (and newest member of Team Liam) Beth for all of their help being waiters, waitresses, cooks, and dishwashers during dinner.  To all of the people who donated items to be auctioned off and to each and every person who attended an auction on a beautiful sunday afternoon solely to help my family.

And if I dont have time to blog about thanking them then I certainly don’t have enough time to blog about Liam’s Auntie Sandra (my little sis), without whom this event never would have happened. While Karin and I have thought about and talked about having a kickoff event for months and months we’ve usually got our hands pretty full around here. It was Auntie Sandra who came through with the to-do lists and the spreadsheets. She kept us on track with twice weekly meetings and did most of the legwork procuring items for auctioning and producing the ticketing paperwork. We can’t thank you enough Sandra. Are you any good at writing speeches?

 

So I’ll sign-off here. I’m sorry that there’s no real blog post tonight. There’s only so many hours in the day and as I’ve said….

I’m supposed to be writing a speech right now.

 

Why I hate Babies-R-Us.

Look folks, I’m just going to come out and warn you, this post got a bit out of control on me.

It’s a long one. A Really long.  So Get some coffee and make sure you’re comfortable.

last weekend on twitter I mentioned to a friend, an acquaintance, a guy on Twitter (@ChuckWendig who probably has no idea who I am other than the fact that I randomly throw tweets his way because I’m a fan of his blog), that I hate Babies-R-Us. Poor guy was about to spend his Saturday registering there and I had to let him know. It wasn’t my fault really I was only agreeing with@jasummerell (another good blog). Anyway, Karin and I have got a story about registering at Babies-R-Us and I promised Chuck I’d write it.  Blame him. I just started typing and couldn’t stop.

Before the story though, I feel I should provide a few bits of background. To set the scene, as it were.

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Firstly, when I was a kid, 9 or ten I suppose but it could have been later, my parents had bought me a stereo for Christmas. My first. Dual tape deck, Am/Fm Stereo, and yes, even a turntable all in one unit. It. Was. Awesome.

Awesome that is, until I tried to play an album and found out that the turntable while excelling in the table part wasn’t any good at the turning part.

I was heartbroken but assured by my folks that after the holiday weekend we would return it to the Ames Department Store for a replacement.  The details of the exchange escape me, but because of bad customer service and the lack of a replacement stereo for our damaged one my parents and I left the store – my father muttering that we would never spend another dime there again.

We never did.

A few years later Ames went bankrupt and there stores closed across the state. My family still jokingly takes credit for their demise. Rewarding good customer service, or more importantly, refusing to pay for bad customer service has been instilled in me ever since.

A few additional examples include . . .

I haven’t set foot in a Wal-Mart in about 13 years.

The cashier at my local convenience store couldn’t be bothered to tell me how much I owed for my transaction on my first (and only) visit to his store, instead choosing to point at the register display. Obviously the television program he was watching was more important than me, his potential future customer, which is why he has never seen another cent from me.

Anyway, customer service means something to me.  Always has, and as such I enter nearly every large corporate “box store” with a slight chip on my shoulder.

Prove to me that you deserve my business.

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Second. Karin and I missed out on all of the late pregnancy third trimester stuff.  While Liam is the product of our 5th pregnancy, he is our first child. Even with his pregnancy the doctors went in to get him before we could start his third trimester of hanging out in mom’s belly. We didn’t get a chance to register. We didn’t get a chance to take baby classes. We didn’t get a chance to make an exciting mad dash run to the hospital after noticing water breaking.( Never having dealt with it in any way all that I can picture is one of those cool super high-speed camera shots of slowly exploding water balloons whenever I hear about someone’s water breaking.)

When you experience the loss of a pregnancy (one of them as late as 24 weeks) you tend to get a little gun-shy on the fun stuff expecting families are supposed to anticipate and enjoy. The rational brain says there’s no such things as jinxes, but a heart that wants nothing more than to be a parent sees jinxes everywhere. Your hope demands guards after it gets its ass kicked a few times. It’s called tempting fate. So we waited until we were sure before going to register at Babies-R-Us.

We waited until we were so sure in fact that Liam was already 6 weeks old. By then, we were pretty sure that we had in fact had a baby.

The NICU was outfitted with everything a premature baby like Liam would need for a while so registering didn’t seem important enough to take us away from Liam’s bedside. It took some coaching from his nurses to get us to listen to what both of Liam’s grandmothers had been shouting at us for weeks. After much hand-wringing and debate we finally decided to venture out of the hospital long enough to register for all the things that we hoped we would eventually need. Liam’s coming home with us was far from a certainty at that point and so it was still difficult to go into it without some trepidation and worry but Karin and I tried to get through it with our usual dark sense of humor. We hit the road for Babies-R-us telling jokes for the whole ride.

Um, Excuse me? Where do we register for a ventilator cozy with a matching version for an IV pole?

Hey! Which aisle has the onsies for all the 2 lb babies? (the answer to that is none of them, by the way)

Oh the jokes we told on our way to the Babies-R-Us.

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And third . . .

I have problems with Babies-R-us that have nothing to do with the fact that my parenting experience has been different from most. I don’t like the way that they treat all first time parents.They’ve got you by the short and curlies over there and the worst part is that they know it.

Expecting your first baby is a vulnerable time. Sure you’ve read the books and heard the stories but you have no idea what it will be like until the kid is born. Hopefully, if you’re doing it right, you’re scared shitless about it until that baby comes home, and then for about 18 years afterwards. I’ve said it over and over on this blog folks. Parenting is hard.

What if I can’t hold on to the squirmy little thing?

What if I can’t figure out how to feed it?

I have to put the thermometer where now? That can’t be right.

Babies-R-Us preys on that fear. They eat it up.  Convert it to energy and it powers the lights, A/C’s, and each and every demo model on the floor, while employees mill about explaining how you can’t possibly bring a baby into a home without a warmer for his or her asswipes. You see without the fear you may figure out ways to raise a child without buying every gadget, trinket and toy.

Now I’m not saying that a warm wipe doesn’t sound like a pleasant experience. The thing is, I’ve got a radiator in the kid’s room that can do that for me for free.

Babies-R-Us does not want you to remember that people have been having babies for thousands of years without the aid of the Tommee Tippee Closer to Nature Electric Steam Sterilizer at $70 a throw. My stove top still boils water and doesn’t have to pay to use the trademarked name Tommee Tippee on  the package. Steam is steam folks.

Now I know they’re a business and need to make money, I do, but while they don’t come right out and say it in writing the entirety of the registering process is designed to imply that you should get everything on their checklist or you are going to be a Bad Parent. Maybe I was being overly sensitive about being thought a bad parent when we went to register, or perhaps I was just being too sensitive about being called a liar and bad parent directly to my face…

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It was a weekday evening when Karin and I made our first trip into Babies-R-Us to register. Late enough that we knew we wouldn’t get it all done in one trip, but we would start the process which would at least keep both of our mothers off of our backs about it for a little while. If we left with a stroller and car seat in mind we would call the mission a success and anything else we had gotten done would be considered gravy.

We were politely directed to a table in special registry area of desks and waited as our “Baby Registry Specialist” (still what they’re called, I checked their website) finished up with another couple. Seeing that we were waiting a while another staff member approached the table and asked the “Specialist” if she could help her by getting us started.

“Well you haven’t finished your registry training yet.  But I guess you can give them the packet so they can start filling out their information. I’ll be with them in a minute for everything else though.” Baby Registry Specialist must be a very powerful position in the Babies-R-Us chain of command. Our BRS was clearly in charge and I judged by her sigh that she was nearing the end of a long day.

We were handed a  big purple folder filled with brochures and pamphlets. Mostly ads for products that we shouldn’t attempt to raise a baby without, and also some free samples of powdered formula and nipple pads. Instead of sensing the apparent seriousness of the situation, Karin and I looked over the form and laughed about how odd our situation was. The forms had multiple spaces for the baby’s due date but nowhere was there a blank for the baby’s birth date. Funny.

But Baby Registry Specialist was not amused. She finished up with the other family and whirled into the seat in front of us.”Oh, you don’t have it all filled out yet? Well I’m just going to ask you the questions and put them into the computer while you finish filling that out ok?” Her excitement at the opportunity to help another young family showed in her stifled yawns and lack of eye contact. Despite the fact that the store didn’t close for a couple more hours it seemed we were making an imposition on her time. “Mom’s Name?” She asked impatiently.

“Karin” Karin said “But we can give you the baby’s name…”

“There’s no space for that.  I just need your Last Name. That’s how you’ll search for it on the computer if you shop and add things online.” Seems that the store employees would prefer you did all of your shopping that way. “Due Date?”

“March 19th, but…” It was mid February at this point. “. . .but our son’s already been born. He’s a really little guy” I said. Still new to explaining our complicated story to strangers Karin and I struggled to find a opportunity to interject that Liam was in the NICU. We were hoping that his due date  still being 6 weeks away would alert a Baby Registry Specialist to the fact that our pregnancy was different from most. 12% of the births in this country result in prematurity, so maybe we wouldn’t have to bring it up at all.

“Oh…Well I’m sure there’s some things that you’ll still need.” It didn’t look like she understood what I was getting at but I didn’t think it mattered. I just wanted to get the damn gun thingy and shoot away at the stuff we would need family to buy for us. We finished with the rest of the form, willfully giving our email addresses and phone numbers to one day be sold to telemarketers before our BRS pulled out The Checklist.

Color coded by category, which also matched the colors given to the different sections of the store, The Checklist even included a map with directions through each section ensuring that you pass by as many of the gadgets and gizmos you really don’t need. BRS pulled her pen from behind her ear and started her speech. She didn’t make it very far.

“You’ll start right here – ” she said gesturing behind her into the corner of the store “with feeding supplies. Bottle systems, and sanitizers are all in this corner. Bathtubs and thermometers are next before you get to baby monitors here.” She motioned toward the map while still keeping her pen over that category on The Checklist.

And then it happened.

“The next big section is travel systems, Strollers and car seats but obviously you guys already have one of those so you’ll probably just go to the diapers or the furniture.” She sounded so sure of her assumptions.

Obviously you guys already have one of those.

I had no idea what she meant.

“No, no, actually we don’t have a car seat or anything…” I stopped her. I was completely confused about where the conversation had headed.

“Well that can’t be true,” (it’s always good customer service to call your customers liars.) “The hospital would never let you take him home if you didn’t have a car seat.”

The words hung in the air for a bit and Karin grabbed and squeezed my hand while I tried to decide if this was really happening or if the lack of sleep mixed with the stress and fear of the previous six weeks had finally driven me bonkers. BRS’s eyes got wide as she paused, realizing that something was going wrong.

After smiling at Karin and seeing her cheeks flush in that pre-crying way I looked BRS in the eyes and calmly said. “that’s because we haven’t taken him home from the hospital.” Karin may have been flush but I could feel the color drain from my face. “He’s still there.”

I wanted to scream at her.  I wanted to tell her that she shouldn’t talk to people the way that she did.  I wanted to tell her that she shouldn’t make assumptions about people’s lives. I wanted to take Karin’s hand and walk out of the store and run to Liam’s bedside. I did nothing. I sat there holding Karin’s hand just hoping we could speed this up and go home.

Now it was BRS’s turn for the color to leave her face.”Um, . . I, . uh . .I’m, . . ” She stammered for a moment – either trying to figure out how to apologize or still trying to process what had just happened. Karin squeezed my hand tighter and tighter while I reeled through the stress, and anger, and fear of the previous six weeks realizing then and there just how different our family’s story was from most new parent tales. BRS looked at us and as she put all the pieces of the puzzle together tilted her head to one side and gave us the look.  We hadn’t seen it much to that point but we still see it from time to time in doctor’s waiting rooms and out for walks. It’s pity.

I don’t remember her apologizing but I didn’t give her much of a chance to.

“We’ll, just take the gun thing and figure out what we’ll need ourselves.” I told her, trying to speed things along. BRS scurried away to get it and a minute later we were walking away from the desk with the whole conversation still hanging there.  Supported by the weight of its own awkwardness.

We made sure to hit the car seat aisle first out of spite, before wandering around for an hour or so picking out the few things we could find that we knew we would definitely need. Then rushed back to the hospital to be by Liam’s side.  All the while cracking jokes about the crazy sales lady and fighting to hold back the anger at her for her assumptions.

I know that this wasn’t really her fault. I mean how could she know what we were going through? But if you’re going to call yourself a Specialist, and you are going to tell us during the sign-in how knowledgeable and well-trained you are for the Baby Registering Service you’d better brush up on the basics of what happens to 1 out of every 8 births in this country.

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The whole debacle was our first experience with the look but we’ve grown much more comfortable with it. When we tell people who don’t know him about Liam we get a lot of  “Oh, I’m so sorry to hear that.”, head tilted to the side in that same annoying look as the one from BRS.

“Don’t be!” we always say, “He’s a fighter! and he’s doing great!”  even on the days when he isn’t. I don’t want your pity. I don’t need it. In fact, I pity all of you out there who haven’t yet met Liam. It may be hard but I’m pretty damn lucky to be the guy who gets to raise this kid.

Anyway,  I’m sure Babies-R-Us do wonderful work with charities helping children and I think that’s wonderful.  I don’t care. I’ve never bothered to check. I’m pretty sure that we only went back in there once to round out the registry. Hey, if people were going to buy us things for Karin’s baby shower, (held in March with her baby almost 3 months old) we might as well pick out things we need or at least  want them to buy. I haven’t set foot in a Babies-R-Us since.

Like I said a couple thousand words ago, customer Service means something to me.

And that’s why I hate Babies-R-Us.

Thanks for hanging in there with me on this one folks I don’t know what got into me.