




Just in case anyone is worried...The sock in Adam's mouth had just come out of the wash--I was folding clothes :) The look on Eleanor's face in the photo with Jim captures her personality perfectly, the little stinker!
Adam and Eleanor were born prematurely on September 29, 2005 at 23 weeks 4 days. Eleanor was born first at 1 pound 5 ounces, and Adam was 1 pound 6 ounces. They were given a 30% chance of survival. Ever since that first day, they have beaten the odds in every way possible. This is their amazing story.










I was so excited I took pictures. Eleanor thought it was quite interesting and kept jumping up and down on my lap shrieking. Guess she takes after me. Adam could have cared less and continued to try to stuff the yellow box that comes with the shape sorter into his mouth. But it put me in such a good mood. Then it snowed twice more. WooHoo! Of course it's melted already, but I'll take it anyway. Good thing I already bought Alex a winter coat to wear to school...
Not much new news. Adam has a discolored tooth coming in. It's on the top to the side. It looks like it will be a yucky brown color.
I called the doctor and although the nurse kinda flipped and made an appointment right way, it's really nothing. Since he was on TPN (total parenternal nutrition) for several weeks when he was born before he was able to digest milk, he ended up with high direct bilirubin levels. High indirect bilirubin results in jaudice and can be taken care of with the bili-lights. Direct bilirubin isn't the same and can only decrease by digesting food. I remember this was a careful balance in the NICU of the bilirubin levels and when he was old enough to be tube fed. Anyway, the high levels can cause damage to the baby tooth buds and cause them to be discolored. He may have more teeth like this, he may not. Eleanor may also have the same thing happen. The good news is that it's temporary and their adult teeth will be fine. With all the problems we could have, this one isn't one to worry about, so I was quite relieved!
Can I complain about insurance once more? The RSV shots were finally approved. Great. For the last week, I've been trying to fill Adam's Prevacid prescription. BCN (grrr...I love my insurance from teaching, which of course I don't have right now) says they won't fill it and to try Prilosec OTC. Did anyone bother to look to see that he's one?? Here Adam, will ya just pop this pill real quick for Mommy? So I had to go through a bunch of red tape for the last week. I called this morning and it was finally approved so we picked it up this afternoon. I was so excited to finally give this stuff to Adam thinking maybe we'll at least see an improvement. So what does he do with the first dose? Throws it right up. Thank you, Mr. Miller, for teaching me irony in 9th grade.

The preemie parents have lots of conversations about the drug Reglan. It is given to many preemies with eating issues because it affects the motility of the stomach/intestines. This doctor does not like the stuff AT ALL because of the neurological side effects. Only if it looks like Adam would need surgery (he doesn't think he will) would he try Reglan--or if I request it. He definitely wants to see what happens with the Prevacid and told me, "Don't worry too much," about Adam. He may keep throwing up but as long as he's growing, even if it's not at the ideal pace and he is weight/length proportionate, he isn't that concerned. He also said, "He doesn't look skinny." Ok, great. Maybe he could take over some of the feeding shifts here at our house and perhaps do the grocery shopping. That would help. On the other hand, it's nice to know that the doctors aren't too worried about him. Maybe with that vote of confidence, I can weigh Adam every other day instead of every day. Hmmm...yet another obsession.
On Monday, Adam gets a weight check and they both get three vaccinations. Then they get flu shots soon and RSV shots after that, toward the end of the month. They are going to learn to hate the doctor's office soon, but I'm glad there is so much out there to protect the little ones.
He's showing the beginning signs of crawling by scooting his knees up under himself and getting up on his arms. Every few days I notice he can stay in this position longer, and now does the cute little butt wiggle thing on his knees. You can tell this all still takes work and concentration for him, but we are so proud of his accomplishments. It seems like once Eleanor could sit up, her development really took off, so we're hoping to see that with Adam as well.
I'm not too worried. We have our pediatric GI appt. on Friday, so maybe we'll finally have a plan by that time. Otherwise Adam looks great and the NP was totally impressed by their progress this year. Unfortunately, they are doing so well that our insurance says that they don't qualify for RSV (Synagis) shots this year. I want to remind them that they were born at 23 weeks only one year ago, no matter how well they are doing now. I don't know if that will help, though. What it does mean is that our hibernation will be even more strict that we had thought it was going to be. Basically, I should say, "See you all on April 1" at this point. The shots are $1700 each, so that's $3400 a month for 5 months. The math speaks for itself when it comes to insurance companies. You'd think they would realize they have already invested about 1.5 million dollars in these two kids and they could spend a few thousand more to keep them healthy, but I have the impression they don't think like I do.
Alex is his absolute best friend/brother and will make him laugh harder than anyone can. I wish I knew how to put video on here because his chortles, guffaws, chuckles, and squeals are something to hear! Speaking of Alex, he made the twins wonderful birthday cards for their first birthday and Adam's says, "To a fabulous brother who is 1! You squeal, you jump, you make me happy when I am sad. You are fabuous. Happy 1st Birthday" I cried when I opened it, so I couldn't even read it out loud. Eleanor's says, "To a talented sister who is 1! You get up on your knees, you scootch yourself around, you go up, up. You are talented. Happy 1st Birthday." I put all birthday cards in scrapbooks, so these are going on page one.

There were babies everywhere, too! Both A and E loved the great amount of attention they received and Eleanor even got to take naps on both grandmas. Talk about heaven. When cake time came, Adam was quite enthusiastic about the frosting on his cake and smeared it everywhere. I even found it on the under side of the highchair try. Nice work!
Eleanor on the other hand, put her hand in it and you could almost hear her say, "Eeww, this is messy. Can I have a knife and fork, Mom?" I think they both tasted a little frosting, but that was it. By the time we got to the opening gifts section of the agenda, they were soooo tired. Adam had even skipped a feeding. (Can you hear him thinking, "Hey this party stuff is great. A kid can skip a meal and get away with it!")
Their gifts are fabulous. So many fun toys and cute clothes! Aunt Rachel and Uncle Ron got Eleanor a shirt that says, "I'm in charge around here. The parents are just for show." That's exactly how the little girl thinks. She is pulling herself up on all objects lower than the couch, and can crawl right over her daddy's legs, just for fun. Adam's favorite gift was an envelope from a card, and he kept tasting the sticky stuff where it seals. Figures. I know I owe you all an "All About Adam" post. Since the birthday stuff preempted it, I'll make it next. A highlight of the day was the cards from their brother, Alex. I'm going to try to take pictures of them to post. He is such a sweet little boy. What lucky twins to have such a wonderful brother.
We had a ton of help from the grandmas and Bernadine with cleaning up, so at the end of the day, it wasn't looking too bad around here. I wish I had had time to talk to everyone more, but I quickly realized that when you're trying to take care of 2 babies at a party, socializing comes last. Thank you to everyone who was able to come and celebrate with us! We are so blessed with love and friendship.
The progress that they have made in one year just astounds me. Eleanor has gained 19 pounds in one year, and Adam has gained 17.5. They have gone from tiny, frail babies covered in wires and tubes to the happy, excited, curious little stinkers they are today. The odd thing is, I've been so...sad. I didn't see this coming, but I probably should have after reading about so many micropreemie birthdays. This is perhaps, one of those experiences that only another micropreemie parent might truly understand. In thinking about their birthday, I can't help but think about their actual birth and what a horrible time it was. I wish that weren't the case, but there is no other way to put it. We had no idea that Eleanor and Adam would be so healthy a year later, so the feelings of dispair and disbelief easily come flooding back. The horrible way they put mothers of perfectly healthy full-term babies
and mothers of very ill children who can't leave the NICU right next to each other in the maternity ward... The sound of other people's babies crying at night when I didn't know if I would ever hear mine cry... Thinking over and over "only a 30% chance..." I slept with their little hospital hats every night for weeks since that was as close as I could get to them. I suppose this isn't the post most of you were expecting to read on such a joyful day as today, but along with the millions of kisses and the rounds of "Happy Birthday" comes such strong feelings of sadness that it almost takes my breath away. I wan't sure that I wanted to write all of this here, but I think that if another preemie mom reads it and feels like I do, we can empathize and nod our heads, thinking, "I know exactly what you mean." But I only think these things when I am away from them for a moment, because as soon as
I walk into the room and they both smile and giggle at me, those thoughts disappear and are replaced with the thoughts of a very proud mommy who has personally discovered that miracles can honestly happen.
It's not so much that Adam gets so much less food into him--it's that so much more comes out. But he's doing well, too, and we'll be happy to see the pediatric GI in October.
Now, this is no ordinary remote. It's got a touch screen that lights up blue, so that makes it extra-special fun. I think if I put the remote at the top of the stairs tomorrow, Eleanor would find a way to get herself up there. When she gets it, the TV goes all wonky.
We have picture in picture. Didn't know that until Eleanor got her little hands on the remote. She will also crawl/scoot herself out into the center of the foyer, turn herself around in a full circle on her belly, assessing the area, and then crank it into high gear once she has set her sights on something. You should see the sparkle in her eyes when she sees a forgotten catalogue on the floor. I'm pretty sure she was asking for Samantha from the American Girl collection yesterday.
Notice that she also thinks it's fun to try to wake up her soundly sleeping brother. Good thing it was time for him to eat, anyway.The only problem with all of this is that she doesn't like to sit still anymore. Here come the baby gates. Next entry--All About Adam.


I guess I pictured us out on walks like all the other stay-at-home moms--strollers and iPod, taking a little tour of the neighborhood. Here it is, almost autumn, and we never went on one walk. Not one. I keep thinking this will all get easier when Adam learns to feed himself, but I don't know. Maybe it will be worse because he'll have more control. Who knows... Until then, we play on the family room floor a lot. Let me just tell you now, though--if you see any stains on the carpet in the photos, you can be pretty sure it's sweet potatoes or bananas or something. Our poor family room carpet has really been through the mill. 
This cuts down on the giant air pockets in his tummy that can shoot food out of him like a cannon. You wouldn't believe it unless you saw it. People have finally stopped telling me, "Oh, my baby used to spit up a lot, too." Ugh! No...it's not like that, really. Come see my carpet. Good thing he's so cute! It's just about impossible to get upset with him, no matter how big a mess he can make. He's so expressive with those eyebrows! He can even lift just one at a time.
To have Alex bapized with them was even more special. Now my husband is surrounded by Catholics... We had everyone back to the house afterwards and fortunately my mom and grandma came by the day before to help us clean and hold the kids while Jim and I worked around the house. 
Adam had an especially good time as shown by the photo with the Corona. No silly, he didn't really drink any. Think teething...though he once went after a margarita at Chili's...
It was also Alex's 8th birthday, so we had a party for him, too. I thought I'd just post a bunch of photos since so many were taken that day. And an 8th birthday definitely deserves blog space!
Eleanor has really blossomed in the past few weeks. Wow, her personality is obvious. She is just starting to move her little legs one at a time, as if she may be getting the concept of crawling. Dan, Jim's brother, put her on the floor and coaxed her with his cell phone to get her to move along. Anything that Eleanor knows she isn't supposed to have is exactly what she is interested in. Phones, remotes, shoes, magazines, balloon ribbons from the party, whatever. Forget all the learning toys, the stuff that says the alphabet, the textures. That's all old news to her. If I would have known we could just throw a couple pairs of flip flops and some old Pottery Barn magazines on the floor to entertain her, I wouldn't have spent all that money!
Adam is as adaorable as ever, but the whole eating thing is just awful. He's thrown up some more again, though now it is from choking on solids. He gets tired and just opens his mouth and lets the food slide back. Once it hits the back of his throat, it's almost inevitable that it's all over. We're still feeding him most of the formula off a spoon, though he's been taking a few ounces here and there from the bottle. It's so time consuming that my priorities in life have entirely changed. Let's just say that if you stop in unexpectedly, I may still be in my jammies and the house will be a disaster. Oh, well. There's always time for cleaning later.
He is getting another bottom tooth, so we're crossing our fingers that once it breaks through, he'll be back to himself. Meanwhile, I'm being creative. He will still eat solids, so I've made his cereal soupy so there is more liquid, I've added scoops of formula powder to his sweet potatoes or green beans or whatever to add calories, and I've used a little espresso mug as a cup to have him drink from it. He isn't very proficient (to say the least) but he swallows some. I'm also feeding him formula from a spoon. Kinda like you're scooping up the milk left over from your Cocoa Puffs--but no chocolate. This has been quite successful! I get so stressed when he is like this... I keep trying to look at the big picture and see that he does weigh quite a bit for a preemie at his age, and he will eat from a spoon.
But it doesn't usually help for long. On the bright side, he has really started enjoying the illegal Jumpster that we put up this week. I say illegal because physical therapists can't stand them. Nonetheless, I regiatered for it and received it as a shower gift. And he is in his glory in that contraption. He sucks in his bottom lip and grins like crazy while he's looking at me thinking, "Why didn't you crack this thing out earlier, Mom?"
We don't put Eleanor in it at all since she can tend to walk on her toes, but it is worth it for Adam. Just don't tell anyone, ok?