Saturday, March 31, 2007

Our Blue Marble

I started watching the Discovery Channel's new 11-part mini series Planet Earth on HD On Demand. WOW!

If you are not watching it, may I please be so bold as to ask you why the h-e-double-hockey-sticks not? The bird's eye view of our planet's vast climatological and ecological diversity is both stunning and breathtaking. The series is narrated by Sigourney Weaver and took over 2,000 days to film.

So far, the episodes "Deep Oceans", "Mountains", and "Pole-to-Pole" have aired. "Deserts" and "Ice Worlds" debut on April 1st. No fooling.

Me And My Sickie

Is there anything more pathetic than a sick, helpless, little kid with a head cold? Ball full of snot aside, there are worse things in the world than cuddling and napping on the couch under a soft blanket all afternoon with my little peanut.

We were supposed to head to my in-laws for the day for Megan's grandfather's birthday party. But since Miss Abby is currently on O2 (just 1 lpm, nothing to worry about), she and I stayed at the homestead together as an 18 month old, sick or not, is not allowed to be home alone and unsupervised for an extended period of time. Betcha never knew that.

So now it's off to make Abby her cocktail. That's right. A cocktail. How else do you think she's going to sleep tonight?

Well, OK, so not a cocktail in the conventional sense. In the next few minutes, she'll enjoy (in one form or another):
  • Flovent
  • Xopenex
  • Atrivent
  • Singulair
  • Omnicef (day 10 - yahoo!)
  • Orapred
  • Motrin
  • Tylenol

And while I'm doing that, AJ is laying down watching "A Charlie Brown Christmas" a mere 3 1/2 hours before April 1st. And no, we don't have it on DVD. It's been living on our DVR since December (and "It's The Great Pumpkin Charlie Brown" has been on there since October).

Good grief.

Wednesday, March 28, 2007

OMG! I'm On FatDoc's Blogroll!

Although I am in my blogging infancy, I found myself linked on FatDoc's blog! Holy cow! Sure, I link to her on my blogroll, but so do thousands and thousands of other bloggers. I feel like I've been nominated for an Academy Award. I am humbled and honored and I find myself without a prepared speech. Except of course for the notes I scribbled while waiting for the limo to the Kodak Theatre.

A true celebrity in the blogosphere, FatDoc (who was recently nominated as a Thogger -- a blogger that makes you think -- by NeoNatal Doc) speaks honestly, eloquently, and humorously about her life as a physician, a mother, and the wife of a pastor. She speaks of her personal challenges, the love of her church, her patients, and of course those med students. And at the end of every month, I nervously await to see if she'll finish her charts or get docked $1,000. It's a photo finish every time!

Not sure what it was on Mind Flakes that caught her eye, but I'll do my best to keep it up. And by the way, FatDoc, if you are reading this, you had me at Misery.

Monday, March 26, 2007

I Think I'm . . . Yeah, I'm Disappointed

So the 'rents were awesome enough to take AJ for the weekend. They took him down to the Jersey Shore to where my grandfather lives year-round now. They had a very nice time, though AJ was a bit under the weather. My grandfather gets a kick out of having the great-grandkids running around. Between my Dad's and my Aunt's (Dad's sister) family, we are clearly the favorites. And by that, I mean that he (my grandfather) gets significantly less annoyed by my kids than my cousins' kids. But I digress.

Meg and I spent a nice weekend with Miss Abby -- just the three of us. On Sunday though, we headed up to North Jersey and checked into a nice Radisson just off the New Jersey Parkway. Now, we didn't do this simply to enjoy the urban sprawl that is Paterson, Paramus, Mahwah and the quaint surrounding towns. On Monday, Abby had an appointment with the feeding clinic at St. Joseph's Hospital for Children.

Now, I need to provide some history here, so bear with me.

Abby doesn't eat.

And that's about the gist of it.

OK, so maybe a little more history would be useful. Abby had surgery to repair her esophagus, has reflux, used to be tube fed (NG tube), and has had all sorts of nasty stuff literally shoved down her throat. It took 10 months before she took sustainable nutrition solely through a bottle (and that's with formula mixed to a higher than normal concentration). She has slowly come to accept food, but only in small insignificant amounts. And for the most part, she needs to be in control (that's a big thing with her). Coming at her with a spoon full of baby food is just asking for trouble. Along with a shirt full of baby food.

We've seen many specialists over the past year to help us get control over the situation. We see a pediatric GI doc regularly (who is incredible), she gets OT and Speech therapy that also address her feeding issues to some extent, and we've been to the feeding clinic at the Children's Hospital of Philadelphia. Most recently, we went to a private-practice speech pathologist (who does not take insurance). We actually got some good advice from her and have seen some optimistic if not encouraging signs from Abby within the past week as a result of more structured "practicing" with the spoon. We praise her for the good behaviors -- she loves that -- and we ignore the bad ones as to not reinforce those.

Everyone we've spoken to has really hyped up the feeding clinic at St. Joe's as being the best around. Needless to say, we had some moderately high expectations from this. So we got there and they took us back on time and the LNP took a history. We joked that we should just record Abby's (extensive) history and provide a CD to each medical professional who needs one. Side note: For all of you medical folk out there or those lay people who have experience with this, I came up with a little PDA joke. When asked if there are any cardiac issues with Abby, I say no, but that she did have a PDA. I then say that it either went away on its own or is now so big that no one can hear it. Ba-da-bum! I crack myself up.

OK. Sorry. So then they observe us feeding Abby with the spoon from behind a one-way mirror. We go through our regular routine, clapping when she accepts the spoon, and breaking eye contact and ignoring her when she refuses or swats it away. All in all, it was not one of her better performances. She did accept, chew, and swallow some Gerber puffs. Then they weighed her, measured her length, and a PT came in and did a brief evaluation.

After a few minutes of consultation behind closed doors, they came back with some recommendations. First, we need to address her recent constipation problem (TMI, I know), although her feeding/swallowing issues greatly precede her pooping difficulties, so we have a plan for that. They gave us a tip or two to refine the spoon feeding sessions. And they suggested we come back in a month.

And that's about it.


Good grief. And this is "The" place to go? Now I learned a while ago that feeding/swallowing difficulties are tough nuts to crack. It seems to be an art more than a science as there are just so many variables, but come on. I can't believe that we can't develop a more detailed action plan. I know it's one step at a time, but no one seems to know what the next step will be until we are there.

Do I have unrealistic expectations? If I do, please tell me. Mind you, I'd drive 500 miles a day to take her to a clinic if I thought it would help get us over this hump, but are we being selfish if we choose not to go back here as the trip doesn't seem to justify the benefits??

I think we are going to make an appointment with the GI doc to go over this evaluation and probably set up some kind of schedule with the private-practice speech pathologist and hopefully incorporate her guidance and advise into Abby's OT and Speech therapies.


Just very disappointed.

Saturday, March 24, 2007

Part VII -- The First Night

The cardiologist came in around 10:00 at night. The NICU was quiet, and we stood next to Abby's bed as we anxiously waited for her to set up to do the echo. She began evaluating Abby's heart and studying the Doppler images on the screen. I wouldn't let my eyes stray from those pictures, though I could not decipher their meaning.

Slowly, the doctor began to speak to us. Structurally, her heart looked good she told us. And with those words, relief swept over me. She advised us that Abby did have a specific type of murmur, called a patent ductus arteriosus, or PDA. During fetal development, this shunt protects the right ventricle from pumping against the high resistance in the lungs, which can lead to right ventricular failure if it closes in-utero. While this shunt normally begins closing with a newborn's first breath, Abby's didn't. And so some of Abby's oxygenated blood was being misdirected and not allowed to reach her body. The PDA was by no means life threatening and would require no immediate action. It would be a wait and see approach and something for her regular pediatrician to keep an eye on. As far as we were concerned, she passed her echo with flying colors.

We stayed with her for a while, but eventually we kissed her goodnight and went back to the room. Abby was sleeping and everyone had gone home. At night, the hospital changes. It's quiet. It feels slower and the stale air rests heavier on you.

And there we were. Alone. I slid the cot next to the bed and Megan and I laid down next to each other. The curtain that hung from the ceiling shielded the light from the nurses station and we tried to make the hospital linens that we were covered with shield us from everything else.

And within the darkness in which we rested, the fear came back. And with it, the uncertainty and disbelief of the past 14 hours. Is that all it had been? Surely, a lifetime had passed.

And so we took turns comforting each other. Alternating between the one needing strength and the one giving it, we made it through that first night.

Looking back now, I know where we found that strength.

It came from a little girl down the hall.

A little girl that had so much, she gave it to her parents who needed it so badly.

To be continued.

Friday, March 23, 2007

Just For Fun - LOST

In a slight departure from most of my posts, I thought I'd share this little gem I found on YouTube. Even if you are not a LOST fan (huh?) you have to admire this guy's mad Photoshop skillz.

Presenting John Locke in fast forward . . .

Wednesday, March 21, 2007

Blogger Ate My Post, or How We Celebrated World Down Syndrome Day 2007

Yesterday, March 21st, was World Down Syndrome Awareness Day. I wrote out a nice post describing my thoughts on the day and what we did.

Then Blogger pooped out on me and I lost everything.

Not having the strength to re-write the post, I thought I'd sum things up for you . . .

1. Diversity is good. Celebrate it. Our differences are what make us the same. Our world is rich in experiences and wealthy in variety. After all, it's the spice of life.

2. If you are lucky enough to have someone special in your life, be happy. Be proud. Be their advocate.

3. Be excellent to each other (and party on, dude).

Monday, March 19, 2007

Speak Up

I know that so many of you do, but it never hurts to be reminded how important it is for us to be advocates for our children. I myself need to be reminded of this too. It is our job to be their advocates and to teach them how to be their own.

There are words, stereotypes, misconceptions, and fears that are either unfounded or simply have no place in our society. At their most innocent they are misguided, at their worst, they are hurtful and degrading.

Do not be afraid to educate. To clarify. To empower. To correct.

Don't make excuses.

Advocacy is powerful because you will be armed with the truth.

It is not intended to make others feel uncomfortable, although that is a likely, yet temporary, outcome. The alternative is that your child may someday feel hated, belittled, or unwelcome. And with that as your only other option, you will have the courage and strength to speak up.

Saturday, March 17, 2007

The Weather Outside

After a brief but pleasant business trip to Cleveland (it rocks!) which included terrific accommodations at the Hyatt Regency at the Arcade and a wonderful dinner at Morton's Steakhouse, my fellow passengers and I surely consider ourselves lucky to be home! I can't say for sure, but I imagine we were probably one of the last flights to get in due to our late season blast of winter.

Once we landed, I counted at least 15 planes lined up waiting to take off. After waiting on the taxiway for about a half hour as another plane was delayed from being pushed back from our gate, none of the planes had moved. Ugh. Nothing like being stranded on a plane trying to take off.

Once back in the terminal, the arrival/departure board was filled with "Delayed" and "Cancelled" alerts. Later, on my drive back home, the news reported that the airport was filled with stranded passengers and that workers were handing out blankets, pillows, and bottled water.

Not that I didn't like Cleveland, but I'm sure glad to have gotten out of there while I did!

Tuesday, March 13, 2007

Part VI -- Surgery

Children with Down syndrome are at a significantly higher risk of cardiac related birth defects. There were no obvious signs that there was anything wrong with her heart, but a pediatric cardiologist would have to evaluate her.

We were told that she would have an echocardiogram that evening and be scheduled for surgery to repair her esophagus the following day.

Things changed. The doctor informed us that they needed to do the surgery today, before consulting with the cardiologist and without knowing if there were any structural defects with her heart. With each breath, her abdomen was distending. She likely wouldn't survive if they waited to do the surgery the next day.

I understood there was no choice. Stranded in the desert and dying of dehydration, one cannot be concerned with the quality of the only water you find. There are priorities and there are immediate needs. But I needed to know what the risks were by doing the surgery before knowing anything conclusive about her heart. The only assurance I got from the neonatologist was that she was not cyanotic.

We met with the surgeon and he explained the procedure to us. He reassured us that no one in the area has performed more of these types of surgeries than he. He told us what he would do and that as a result of the surgery there would be a 100% chance that she'd have reflux. Reflux I could manage. But a cardiac defect? I was not at all worried about the surgery. I prayed her heart was strong. Abby had taken mine the minute she came into this world and now I was frightened for hers.

Slowly, family started to arrive. We hugged. We cried. We had questions. We wanted answers. There were none. We relived each moment over and over again and tortured ourselves with searching for reasons where none existed. We promised support for each other. None of us were alone, but each of us felt as though we were.

A nurse came into the room and told us that the surgery was over and the doctor would meet with us. We hurried into the lounge and waited for the surgeon. Finally, he came in. He told us that the surgery could not have gone any better. At that moment, I realized that I was in fact concerned about the surgery. Of course I was. How could I not be?

The repair would be evaluated in a day or two and if it was sound, we could start feeding her. We made plans for her to be at the hospital a few more days. Maybe a week. But no more than that.

And so we waited. We waited for the cardiologist. Family left and still we waited. We stayed with her in the NICU. I looked at the other children. The other families. What were their stories?

Each of them had one.

No one wanted one.

To be continued.

Monday, March 12, 2007

Part V -- I Remember

There is a lot about that day that I remember. Details that remain with me. Things that, by themselves seem small, but that loom large within the fabric of my story. Of Abby's story.

There are also gaps of time that are lost to the tragedy of that day.

The doctor left us. The nurses, after offering a consoling glance, followed him out the door. Meg and I remained in the room, but we were not alone. With us was a sea of uncertainty. Of sadness. Of disbelief.

We said nothing for a long time. There was nothing to say. We held each other and silently grieved for the daughter that we lost, scared for the daughter that we had. We didn't understand what was happening, and we certainly didn't understand why. I don't remember who spoke first or what was said, but I know that what was spoken was said out of fear. I know that now.

I remember calling my parents back. My mother heard me say "hello" and immediately she asked what was wrong. I must have told her about the TEF first, because I remember saying that there was something else.

I told her that the doctor thinks that she has Down syndrome. I don't remember what she said next. I don't remember what I said next.

I don't remember what there was to say.

To be continued.

Saturday, March 10, 2007

Tag, I'm It

Jeff over at OWTK has tagged me for my first meme.

The topic? My five most favorite things about feminism. Yeah! OK, so here we go . . .

5. The fact that I am perfectly OK typing this list while my wife literally is sitting on my lap providing me with her valuable input.

4. That I am happy that my wife just explained to me that what I was about to write for #4 was actually anti-feminist.

3. My wife has a better relationship with our car mechanic than I do.

2. That I can have an intelligent conversation with my wife about sports -- and that she doesn't make me feel too dumb.

1. That Danica Patrick is HOT!


Alright, I think I need to throw this back to the ladies, so now let's hear from:

Pam at Rhett's Journey

Tammy at Praying for Parker

Nicole at All 4 My Gals

Carey at Dream Big

Amy at the Flege Farm

Part IV -- Windmills & Tulips

I never had any particular desire to visit Holland, but it was to Holland that I was going. And it was in Holland that I would stay.

An hour and a half after Abby was born, the neonatologist came into the room. I was sitting next to the bed. The two nurses were standing in the corners of the room. The doctor sat down opposite me. I didn't like that he was sitting.

He wished us congratulations on our beautiful new baby girl. He asked what her name was to be. Abigail Elizabeth we said. Abby.

He told us that there were a few things he needed to go over with us. "I don't suppose you had a chance to look at her after she was born, did you?", he asked. We both nodded, not quite yes, and not quite no.

Here it comes.

"There are several physical characteristics that I noted", he added.

Here it was.

I felt terrible for already knowing this for over an hour. I had already been processing it as the reality it was. Meg didn't know. I was scared for her.

Trisomy 21. Down syndrome. He stole our baby as the words came out of his mouth. He took our daughter. AJ's sister. Our dream. Our family.

Moderate to mild mental retardation. IQ ranges. Early intervention. Therapy. Special Olympics. Support groups. If I thought this was too much information to handle, to process, then the next hours, days, and weeks, would test my very ability to function as a person.

We held hands. Meg looked at me. She looked terrified. I looked back at her with the slightest hint of a smile, and I nodded "I know".

I knew.

But there was another problem. Her esophagus hadn't formed properly. Coming up from her stomach, it was connected to her lungs. Travelling down her throat, it ended in a blind pouch. Tracheoesophageal fistula with esophageal atresia. Otherwise referred to as TEF, it is a birth defect occurring in roughly 1 birth in 4,000.

It is why the tube they used to suction the amniotic fluid out of her nose and lungs after birth wouldn't pass far enough down. It is what caused the bubbles at her mouth. It was what would require her to undergo surgery 5 1/2 hours later.

And it was what most likely caused the infection that would very nearly take her from us forever.

To be continued.

Wednesday, March 7, 2007

Part III -- Waiting

I took a picture of Abby as they wheeled her out of the birthing room and down to the NICU. She had a little pink hat on.

We began the ritual of calling family and friends. I remember calling my parents and telling them simply, "7 pounds 4 ounces". They never told us her length. They were shocked. Not by the weight, but by how quickly things happened. I heard them tell AJ that his new baby sister was here. "I am happy!", he replied.

My Mom asked if everything was alright. I said yes, but that they were taking her to the NICU to make sure her lungs were OK because of the meconium. We called my in-laws, sister-in-law, work. We gave everyone the good news. I knew that the news likely wasn't all good.

And so we waited. But we weren't alone. Two nurses -- actually an RN and a student nurse -- were with us. They came in and out of the room, but they were there. They were there because they knew. They clearly knew. One of them went down to the gift shop and bought Abby a little stuffed animal. One that wouldn't leave her side for six weeks.

I tried to put it out of my mind. I knew it couldn't really by true. I tried to read, but I couldn't. I looked at the pictures I took of her. I focused on the one where she had the pink hat on. I was overreacting. Look at her. No way.

Meg talked on the phone. I paced. I looked out the window. It was overcast. I looked at the traffic on the road. At the cars pulling in and out of the hospital parking lot. I looked at the pictures again. I became more convinced.

That it was true.

To be continued.

Check this out!

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T-shirts, sweatshirts, note cards, totes, artwork, fleece blankets, and wooden letters are all available now. Coming soon are bibs, hooded towels and burp cloths!

Becky is a fellow T21 parent and has come up with a fantastic, unique design. The three caterpillars depict the shape and orientation of the three #21 chromosomes that are the hallmark characteristics of Trisomy 21, or Down Syndrome.

We've already ordered one piece from Becky, and we'll certainly be coming back for more!

Saturday, March 3, 2007

Part II -- Beautiful Eyes

I didn't notice how far the tube went into her nose and down her throat. I didn't notice how far it didn't. I didn't notice the bubbles at her mouth.

I noticed her not crying, but they told us they didn't want her to. Her eyes were open and she was pink.

Meg was exhausted. We had only arrived at the hospital a little over an hour ago. She laid back in the bed and breathed a sigh of relief. I wasn't ready to allow the breath out yet. They let her hold Abby for a moment before they took her.

I stayed at Meg's side while the doctors were with Abby. At the foot of the table where they had Abby, there was a nurse -- one of many. She was tall with blonde hair. We made eye contact. There was no expression on her face. She broke her gaze and went back to work.

A few minutes later, they called me over so I could take a look at my new baby girl. I went over to see Abby. I looked at her and smiled. I saw her eyes. I saw it instantly.

It was in her eyes.

To be continued.

Part I -- Delivery

Meg said that it was baby day. We both tried to get back to sleep and did -- at least I did -- for a little while. It was about 3:00 in the morning. I was excited, but something felt different than 3 years prior when AJ was born.

I took our 3-year-old-to-be to my parents' house. He knew his baby sister was going to be joining our family. When I got back to the house, Meg was eating breakfast in between contractions. She knew that once at the hospital, her sustenance would consist of little more than ice chips.

We got in the car and headed down to the hospital. Meg knows that if I don't have coffee in the morning, I'll get a really bad headache. She asked if I wanted to stop, but I said no. As we got closer to the hospital, we hit a lot of morning rush hour and school traffic. We were stopped at a light where there was a Wawa. Since her offer still stood, I pulled in and got some coffee and a breakfast sandwich. When I got back to the car, I really noticed just how uncomfortable she was. The contractions were getting pretty intense.

Meg was supposed to have an ultrasound that morning at her OB's. At her previous visit, the doctor wasn't 100% sure that Abby was head down. She had been, and most likely still was, but they wanted to be sure. At the hospital, she was evaluated in a triage room. She had a lot of extra amniotic fluid and I could see the concern growing on the faces of the doctors and nurses. I asked if everything was OK. Unconvincingly, they said yes.

She asked for something for the pain, but there was nothing they could do. She was 9cm already. Between contractions, they tried to check Abby's positioning with the ultrasound. She was pushing. They told her to breathe. If you breathe, you can't push.

She was head down and we were wheeled into the delivery room. They told us she'd deliver as soon as they broke her water. There were a lot of people in the room. They broke her water and the doctor examined the fluid on her fingers. It was streaked with meconium.

The NICU staff was there and the warming table was heating up. She looked at me and told me she was scared. So was I. She started pushing. She was making good progress, but Abby's heart rate was going down.

They told her she needed to deliver now. And she did.

She was beautiful.

And so was Abby.

To be continued . . .

Friday, March 2, 2007

Back it up

OK, so I started off full steam ahead here, but I imagine there is probably some benefit in taking a step or two back and filling in some blanks. Who's who, what I'm about, etc. So, that's what I plan to do this weekend as Miss Abby and I are on our own -- the rest of the family will be at my in-laws (all of us were going to make the trip, but the status quo this winter is that the little one is under the weather).

Please stay tuned and check back for updates!

Thursday, March 1, 2007

V(ictory) for Villanova

Congrats to all my fellow Wildcat fans out there in the blogosphere. Awesome win last night at UConn. Stud-muffin Scottie Reynolds with 40 points (the most ever against the Huskies at Gampel Pavillion)!
Here's hoping that this locks in an at-large bid for the Cats, although another win or two (or three) in the Big East Tourney would be nice!