Cole Rodgers

Born on April 29, 2007 to Cathy McMorris- and Brian Rodgers, Cole has been diagnosed with Down Syndrome.

Cole is apparently doing well, and the parents are taking things one day at a time (as they should) as they get over their initial shock.

Oh.

Almost forgot.

Cathy McMorris Rodgers happens to be a Congresswoman from Washington state.

You can read about the story here.

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.

Huh?!?!

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.

Ugh.

Just very disappointed.

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.

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).

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.

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.

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.

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We interrupt our story to bring you this important commercial announcement!

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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.

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