Day of Darkness Past...

Dear Nicky,

One year ago exactly we got the results of the amnio that told us about the Trisomy 21. When Mom and I think about what we've been through, and what you've been through as well, it almost blows our minds. Last Thursday when we were talking to Dr. Solo, who's know us since before you were born and was the first one to tell us you probably did indeed have Trisomy 21 based on what he saw with your heart and your femurs, he told us how spectacularly we've dealt with this situation. "We're spectacular people," I told him. Looking back on those days, I'm surprised we didn't go crazy, I really am. The people we were then are no more. In their place are some battle-hardened warriors, armed only with their courage and devotion to each other, and these arms are enough.

This morning we went to the docs' because of your super snot filled nose. I was worried it might be infected. Unlikely, they said. No fever, no red throat, no ear infection, just tiny baby nostrils that don't want to give up a cold. Tim didn't come today, so I worked you, sort of like he does. Since you didn't nap at all the whole day, you quickly tired and went to sleep at 5:30, after you pounded 8 ounces. You were out like a light!

Love,
Dad

Monday morning...

Dear Nicky,

It's morning as I write this for a change. Thought I wold try to do it early when I still have some energy left, rather than late at night after along day and a glass of whine.

Well, Shelby just left. Monday's she does your DI. Mom was still here when she came, and the two of them chatted a little more than I do when it's just me and Shelby. She's here to work, you know what I mean? She's on the clock. Anyway, you did well with Shelby and she had some good ideas for stuff. She's crazy about you, and she also digs Mom, said she's got good karma. Sweet.

Anyhoo, you are doing way better this morning, coldwise. It seemed pretty nasty over the weekend, especially on Saturday when you woke up at 2:30 in the morning, nose all plugged up. You're still snotty, but we think markedly improved. You pounded a six ouncer and now you're down for what should be a lengthy nap, since you didn't take one earlier. It's like 18 degrees out, so I don't think you'll be going anywhere today.

This morning posting is pretty convenient so far. I wonder if we'll be able to do it on a regular basis. I'm working on a schedule sheet trying to plan out our day from seven in the morning to seven at night. This sort of thing is supposed to be good for kids, and I think it'll help me even more.

Love,
Dad

How 'bout a little wine...

Dear Nicky,

This morning you went out with Mom to see granny. Very early this morning you woke us because your nose was too stuffed up. We're beat.

Love,
Dad

Sorry, pally...

Dear Nicky,

Today we looked at house. You do well out there. Too tired to go on...!

Love,
Dad

One year ago...

Dear Nicky,

A year ago today we met Dr. Solo for the first time, and he broke our hearts when he told us, "I'm gonna be straight with you, I do see something wrong with the heart..." We then had a rush amnio, the results of which seemed to take forever.

It was very cold and windy out today, too cold to go anywhere with a little baby, so we just hung out. I look forward to winter being over. You seemed to be fighting a bit of a bug for a few days now. No fever, no coughing or sneezing, just lots of snots. But there seemed less of them today. And as for your temperament, you've been mostly sunny this whole time. Your appetite is always good, so hopefully that garden hose of boogers will dry up soon.

Love,
Dad

Another lifetime...

Dear Nicky,

This afternoon we went to see Dr. Solo, so he could check out your heart, and check out Junie's heart, too, while she's still inside Mom. We got great news all around. Junie's fine, absolutely normal. And you, you get better all the time. Solo says this tiny hole called a shunt, which slightly threw off readings earlier, has gotten smaller. He also said he doesn't see the need for catheterization because everything is looking so good. Wonderful news!

Later, Mom took you out to see your cousins at some lady's makeup party in Chatham. It might have been a little much for you, because you were apparently fussy the whole time. I think it was because all week long we've been running around, going to doctors. Three doctors this week! You're tired, and you've got a bit of a cold, too, so why would you have any fun in a houseful of strange, clucking women? You livened up considerably when you got home, and we had a lot of laughs doing "bump on the ceiling."

One year ago today was when Mom was getting the tough news at Roosevelt Hospital that they were seeing a problem with your heart. That's when our own personal terror alert levels went through the roof. We are all different people now, changed forever and stronger together.

Love,
Dad

Oops...!

Dear Nicky,

Gosh is my face red. Yesterday I got all teary and mopey, but it turns out I was off by a day. It was one year ago today when Dr. Hedley said your femurs were measuring short, which sent us spiraling out of control into a world we knew nothing about. So kindly excuse last night's post, or better yet, read it today.

This morning I couldn't sleep. I was wickedly uncomfortable, both mentally and physically, and it felt like I was under demonic assault. I've been up since about 3:30 or so. This afternoon we went to see Doc Slushie (not his real name of course, but everybody's got a codename in my universe), and he checked you out down below. Everything looked great and he seemed really kind and solicitous about our overall experience. It was a long day for you. When we got home, you pounded an eight ouncer, then were out like a light. I hope you sleep through the night. Tomorrow we go see Dr. Solo. I hope we get some clearcut and definitive statement like, "You don't have to worry about this anymore."

Love,
Dad

Dark Anniversary...

Dear Nicky,

Exactly one year ago today, when your mother was 37 weeks pregnant with you, the OB/GYN told her out of the blue that your femurs were measuring a little short in the ultrasound. Up until this point, doctor after doctor had said this was a textbook perfect pregnancy. Until this point there hadn't been a single problem or complication. Mom had maybe two instances of morning sickness the entire time. I was on jury duty when Mom called. She had just come from the doctor and was distraught but she still insisted on going back to work. Later that night she and I agonized over what the next day would bring, because that's when we would go to the hospital, where we would have a more detailed ultrasound and an echo. I tried to convince us both that there was nothing to worry about, that your femurs were short because Mom has short legs and that's all there was to it. I almost believed it. I never thought in a million years things would turn out the way they did, my darling, my heart.

Love,
Dad

Can you hear me now...?

Dear Nicky,

This morning we went to the ENT, a doc name of Berg. He's just down the street from Stepping Stones so that means we had to drive on 280 again, even though this is President's Week and there's no Stepping Stones. But since we weren't going first thing in the morning, there were no traffic delays and we flew there in no time. When we got there they took us right in. Another nurse fell in love with you. People tend to find your eyes pretty amazing. Anyway Berg shows up, checks you out, dismisses any questions I had, then breezes out again. He did clean a bunch of wax out of your ear canals though, so at least he did something. You were very cooperative, too. I think we'll go back to have your hearing checked in a month or so, then we'll find somebody else. This guy's okay, but I want good answers to my questions.

Love,
Dad

Quiet Sunday...

Dear Nicky,

Not much going on today, too cold to go anywhere, plus I think you're still tired from yesterday. You had a mega snot in your right nostril this morning, wet, long, and ropy, but we used this new snot siphon we got at Target that worked surprisingly well. We put you on a bolster a number of times and more often than not you moved yourself forward and over it; guess crawling is on the way. You ate a nice big bowl of cereal, took a nap and a bath, and ate some more. We're very happy with the way your business is looking down there. But now we're worried that you might be developing the ol' crosseye. I sure hope not, son. I hope you catch some breaks.

Love,
Dad

Fun time...!

Dear Nicky,

Yesterday's post might not have made a lot of sense. I was bone-weary at the end of the day and not sure of what I was writing. But anyway, Mom took you out early yesterday morning to Granny's and then Aunt Erin's. Your aunt and cousins are crazy about you. They showered you with so much love it was wonderful. Mom described how you all played together and it made me want to cry. She was so proud of how alert and active and concentrating you were. And talk about well behaved! How come you're not so well behaved for me? Then you spent the night, woke up to more love, went to the mall with Mom and Aunt Erin, then came home to me. Boy, did I miss you, but I really like the idea of you and Mom having a nice time with your other relatives. I used the time away to do some errands, get a haircut, go to the eye doctor, and go to the gym. So everybody wins!

Love,
Dad

Out with Mom,,,

dear Nicky,

this morning Mom took you out on an adventure, Unfortunately I ;mm too tired to write. I;ll tell tomorrow.

Love,
Dada

A long, whiney day...

Dear Nicky,

Your teeth are definately coming in. It's great but you're very uncomfortable, and I am wiped out.

Love,
Dad

Our friend Edna...

Dear Nicky,

This morning you were just okay with Shelby. You were off your game because you didn't nap. Toward the end of the session it looked like you were trying to drink from the straw like we want you to. This will take some time. Shelby's a sweetheart; she offered to watch you if Mom and I ever needed her. You ate your lunch well, at least. Then at 1:00 our new friend Edna came over. She's going to be a semiregular sitter for you on Wednesday afternoons. When she came over I took a shower while she took care of you. Then I went to Walmart and found some of those straw cups Shelby's talking about. Then I went to Target because why not? But I forgot to get Mom Splenda and me some Choxie candy. When I got home you and Edna were out for a walk. You hadn't taken a bottle at all since 12:30, so I was able to quickly get six ounces into you while you smiled and flirted with Edna. Boy, you really took a shine to her! Shortly, I gave you your dinner while I explained the therapy spoon technique. Mom came home; Edna left; then Mom left to go do some volunteer thing at Stepping Stones. She's still not back yet. Man is she going to be tired. But I'm really happy you took to Edna so well. She seems to adore you too. See, it's because you're so darn goodlooking and charming, people are blown away.

Love,
Dad

Nice day...

Dear Nicky,

This morning you were more like your old self at Stepping Stones, alert, smiling, and hardworking. See, Mom gave you a double fruit serving after breakfast and it gave you energy. You did well, which was a refreshing return to your usual behavior, as opposed to the past several times, when you simply not in the mood. You were the star again.

Getting out there morning was not nearly as bad as I'd feared, although there still so much congestion by the Holland, and on 280 over the Newark drawbridge. Once we clear the bridge, it's not even fifteen minutes to get to school.

On the way home you fell asleep and remained so even when I toted you up the elevator. You only woke up when I put you on the bed and covered you a little. Tim came by after lunch. He works you out well. Then you had some more formula and then went to bed without any solids. Don't blame me, you're the one who got crazy slept out of the blue!

Love,
Dad

Snowbound 2...

Dear Nicky,

Everyone was digging out from yesterday's blizzard today, so we didn't really go anyplace. We kept it mellow and had some laughs. You made progress with holding two items and clacking them together. Fantastic! Battery's low, gotta run!

Love,
Dad

Snowbound...

Dear Nicky,

It was a blizzard out today. It started early evening yesterday and lasted almost all of the day today. There's around two feet of snow on the ground. I haven't seen so much snowfall since '96 or so. I hope the roads are better on Tuesday when we go to Stepping Stones. We were all trapped together today--you, me, Mom. But it was fine because you ate well and slept well, and seeing that makes your parents happy. You spent a lot of time on your tummy, squirming, reaching, exploring. You're not crawling yet, but you seem to be wanting to move toward it; you're trying to pull your knees underneath you. It's tough work. They crawling is very important for a baby's overall development. I don't think my parents let me crawl enough when I was a kid, and now I've got all sorts of aches and pains. Could I be getting older...? Nahhh...! You keep me young, pal.

Love,
Dad

Preening...

Dear Nicky,

Not much going on today. It was cold and dreary out all day. Mom was kind of worried all day because you are getting a little difficult to feed in the morning. You won't take your bottle, and you push her hand away. Yet you do like to eat solids, so maybe just your morning appetite is changing. Plus you're getting hit with the double whammy of teething right around the same time everyone's expecting you to start making more of a transition to solid foods, so that must be really annoying. Over the course of the day, I gave you a couple of snoots of Tylenol, which thankfully really seems to help. I almost forgot to mention that you took two really great naps today, a two-hour nap in the morning and a two-hour nap in the afternoon. I mean these were textbook perfect naps, just like Doc Mock once described. (How lame is it that a couple naps are so exciting?) This would be great if these naps continued like today. It might be because of a growth spurt you're undergoing. It's that patched-up ticker of yours, I'd say. It makes it easy for your now to eat and exercise, grow and develop.

On a different note, I gently pried most of your remaining cradle cap off your head. Using one of those hard rubber combs that don't scratch, I combed over your scalp for several minutes, getting a lot of those flakes off. You babbled quietly and happily the whole time, so I guess you didn't mind. They came off easily, and now they're all just about gone. I think you liked getting preened. I felt like a daddy chimp with his offspring in the wild, except I didn't eat any of the flakes.

Love,
Dad

Your first sitter...

Dear Nicky,

Edna came over this evening to sit with you for the first time. Mom and I went out for a couple hours. It felt weird and we were both uncomfortable. Also, evening's are when I want to start winding down, not going out. But it's good for both parties. It'll be better when the weather's nicer. Edna's great, though. She's from Colombia and studying to be a speech pathologist. With her thick accent though, I'm thinking she's going to go back to Colombia after she graduates. Anyhoo, we went to Barnes & Noble, got some Japanese food, went to Blockbuster, then came home. Edna said you wanted none of your bottle, which is a little worrisome because we don't want you to never take a bottle from anyone but me. You started hollering around 10:30, so I gave you eight ounces and you were out again. Also, that Japanese restaurant was annoyingly loud, drafty, and crowded. I don't know if you have sensory issues, but I'm pretty convinced I do!

Love,
Dad

Moisture...

Dear Nicky,

This morning there was massive congestion on Route 280, and it took us a long time time to get out to Stepping Stones. During your PT there today you weren't in the mood for it. I think you were hungry, so I fed you and you livened up for OT. Your therapist there loves you, so that helps. After class we hung out briefly to listen to some mothers talk about their older kids and the educational needs. We woln't have to worry about that quite yet. On the way home, we went to Target and got a humidifier. Hopefully, you won't be so stuffy in the mornings with a little moisture in your air tonight.

Love,
Dad

Baby sips...

Dear Nicky,

So Shelby came over this morning to work on you some. She usually is five to ten minutes late, but this morning she was right on time, which meant that I had to share some of my freshly juiced drink with her, since it was still sitting in the container, smelling all good. I may have mentioned before that I might have a problem with textures myself, which is why I'm not a major fruit or vegetable eater, but put 'em in a juicer and watch out!

Anyway, Shelby worked on you. We're still trying to get that tongue protrusion thing under control. It'd be great if we could. She also got you to take a couple tiny sips out of this cutaway training cup we have. You were pretty messy, but I think you're on the right track.

Later you took basically a three-hour nap. This is an historic event. You semi-woke up an hour into it, fussed a little, but went back to sleep. Two hours into you woke up screaming, probably a combination of teething pain and the desire to continue sleeping. Also, the dry air in here has you stuffed up, and I figured that was the most significant factor in your discomfort. So while you were screaming inconsolably I squirted some saline up your nose and liquefied a couple of big boogers. As soon as that was done you were much better and went back to sleep. But while you were screaming and before I could get the saline into your nose, you had a really bad meltdown, like something we haven't seen in months. I sure didn't like seeing that! But afterward you went to sleep, then woke to eat, then you went down for the night. You better be doing some serious growth-spurting!

Love,
Dad

Busy, and not...

Dear Nicky,

This morning began with Mom braving the cold and the dark to get some milk for our coffee. I told her I'm so filled with admiration for her, because when it's cold and dark I can barely function. Then again, at about 7:30 she's down for the night, much like you actually. So anyway, we gave you a nice bath so you were clean for Stepping Stones. I had to do without unfortunately, but I don't think I reeked too badly. We left at 7:55, and that five minutes made a huge difference. Guess most people tend to leave at 8:00, so we were ahead of all those New Jersey insane drivers. With your PT this morning, you didn't do much. You just didn't seem into it, but you livened up for speech, where you sipped out of a cutaway cup a little bit. Later we went to Doc Mock's just so he could take a look at your incisions and make sure they were okay, which they were. Also he told us not to worry if you don't eat a lot due to teething. For us not to worry is a major deal, but we'll try. Doc Mock has a bit of a Napoleon complex, but he knows his stuff. Oh, by the way, you weigh 20 pounds, 14 ounces. Nicely done. So we came home and got some cereal into you at last (it was puff free this time), then Tim came over and gave you such a good PT work out. That guy is always so energetic and positive, and you work so well with him. Afterward you wanted a bottle, then went to sleep, out like a light. I get tired a lot sometimes, so it seems like a busy day even if it's not so busy, hence the above title.

Love,
Dad

Monday blahs...

Dear Nicky,

The wind chill was pretty bad today, so we just stayed in. You're still teething and uncomfortable. Once again I tried to introduce you to firmer solids in the form of these tiny fruit puffs. I've been putting them in your cereal for the past several days, and at times, I've felt like we've been making some progress. From this past Saturday to now, you're having none of it. Today was the worst in terms of your dislike. It's probably bad timing, what with your mouth being all weirded out with these little razorlike teeth coming in, and on top of that you have to deal with another weird sensation. Apart from that, you worked well with Shelby, and did drink a lot of formula. Come dinnertime, you ate like a champ, then whined and groaned till we put you to bed, where you went out like a light. See you tomorrow!

Love,
Dad

Frustrating Sunday...

Dear Nicky,

You're teething. It's been a long time coming, and we're delighted it's finally here. Unfortunately it's wreaking havoc with your appetite, and in the morning you barely want to eat a thing. Myself being the child of European immigrants, I can't help but equate eating well with doing well in general, and the opposite is true also: not eating a lot means something is terribly wrong. I don't actually think this way in my head, but that's what it feels like in my heart. You ate sparingly throughout the day, till your evening meal and bottle, which I will admit, you did well with. Everybody says, Teething comes in the door, appetite goes out the window. So I guess we'll just have to be patient and let this situation work itself out. Still, it's very frustrating for me as a father to try to feed my boy the food he needs even though he doesn't want it. In other news, Mom went to a friend's baby shower this afternoon. It was just okay, I guess. She said the dessert tasted like fish. Sounds pretty gross. But she stopped by Target on the way home and got you a shirt-type thing, and some of that crazy-good peppermint candy called Choxie. We had a lot of laughs rolling around together too, so it's not like you're a total monster or anything.

Love,
Dad

Playing catchup...

Dear Nicky,

Wednesday, Thursday, and Friday were days were I simply couldn't keep my eyes open long enough to tell you what happened on those particular days. It's your own fault, waking us up at 4:30 Wednesday morning, 2:30 Thursday morning, and 5:00 on Friday. Oh, and around 5:00 this morning. We know you can't help it. You're probably going through a growth spurt and you're teething, which is no doubt making you insane.

Anyway, not much happened on Wednesday. Shelby came over in the morning, you did really well with her therapy. Then you ate, slept, played, ate, slept, played, etc. We have been giving you a few fruit puffs in your morning cereal to introduce you to different food textures. You sort of hate them, but I think you're gradually getting used to them; you're crying less each time, anyway.

Thursday, you woke up at 2:30 in the morning hungry as a bear, which was impressive because you ate quite well during the day. So after you pounded 8 ounces and went back to sleep, I was up till 4:30 because I couldn't go back to sleep. Fortunately Mom had already made plans to go to Stepping Stones, so she ended up taking you while I stayed home, chilled, and cleaned up the house. Too bad I couldn't make it, because Mom said you were great in PT and OT. Later that day Tim your other PT came over and gave you an excellent workout. And that was Thursday.

Yesterday was Friday, and we went out to St. Barnabas Hospital so Mom could have her 20-week ultrasound. It was fast and mellow and no surprises. Your little sister June is looking just fine. On the way home we stopped at Target, came home, and hung out while you took a really long nap, which was the most impressive thing of the day.

This morning we went out with our Realtor and looked at a bunch of overpriced houses. We'd like to find a nice house for a decent price. All the houses we saw were ridiculously expensive and they were all chockablock on top of each other. I hope we can find one we like soon. You were so well behaved the whole time. When we came back you took a nap while Mom went to get cheese steaks. Then I fed you, and Mom took you out to get a present for this friend of ours who's having a baby shower tomorrow, on Superbowl Sunday if you can believe it. Then you ate, we gave you a bath, which you really seemed to enjoy (I refer to the marked increasing in splashing that you did; it was quite fascinating), we peeled off the last of those wound strips, then we gave you a bottle, and you were out for the night. Mom and I had some creamy pasta with imported prosciutto.

And now you're all caught up!

Love,
Dad

Another lame note...

Dear Nicky,

I'm crossed eyed with tiredness. Forgive me. I'll try to catch you up later.

Love
Dad

I thought yesterday was bad...

Dear Nicky,

If you thought I was tired yesterday, from waking up at 4:30, how about waking up at 2:30 this morning and not being able to go back to sleep? That's all I have the energy for right now, fella. Hope tomorrow is better.

Love,
Dad

Don't be such an early bird...

Dear Nicky,

You woke us up at 4:30 this morning, man. You don't have to do that. 5:30 ok, six is even better, but not 4:30. It affects our whole day, me worse than Mom, I'm afraid. I'm so tired now, I think this is all I'll post.

Love,
Dad