Heads Up!

Eleanor and Adam both have their heads up now. They are much more fun to play with on the ground this way. Of course, I had to order some fun tummy time mats for them to play on. A good excuse to go catalog shopping, don't you think? Eleanor is quite steady and can keep her head up for a much longer period of time now. It's something new for Adam, so he can only manage for a couple minutes, then it's back to sucking on the blanket that he's laying on. He's predictable, anyway. They both have started to grab at things around them--mostly easy things like blankets. Of course, they stuff them in their mouths, then and we have lots of wet cuddly blankets laying around. Eleanor drools like crazy, so hers are especially soggy!
We went to the pulmonologist yesterday. He is the doctor that determined the amount of oxygen they were receiving. Eleanor's monitor has been discontinued. She is officially wire-free all the time. Even at night. Which is pretty scary for us, since their heart and breathing has been monitored at night since we've been home. I'm sure I'll be running into their room just to make sure she's ok. Adam still has his monitor for at least another month. Because of his reflux, he will sometimes have bradycardias in the middle of the night, setting off his alarm. They don't last long and his heart rate doesn't go down too much, but it's enough to keep him on the monitors for awhile. I'm hoping until he's two. I don't think the doctor will go along with that, though.
We also went to the pediatrician on Monday. Adam is now on Zantac and we are trying to get him to enjoy eating again. He is only eating about half of what he used to and his weight gain has basically stopped. Fortunately, he was a bitt on the chubby side, so now that he's growing longer and not gaining weight, he's getting to be a little more proportionate. It's still quite stressful when your baby doesn't want to eat and I spend all but a couple hours a day feeding them. Showering has become an afternoon activity. Sometimes an optional activity. I figure that if reflux is the only thing we will have to deal with, I'll be patient and know that it will come to an end one of these days. If anyone has any advice on how to get Adam to like his bottle more, please feel free to share!
Next Friday is the Developmental Clinic appointment. I'm sure I will have lots of updates then. Happy Spring!

A New Friend

We've really done some travelling this week! Considering how long we've been cooped up inside, it's no surprise we've taken advantage of the nice weather and the lack of oxygen paraphanalia. We are still only visiting people without school-aged children, so visiting my grandma and my friend Alissa and her 5 month old little girl was perfect! You can see them together on the couch. They are similar in size, but she is quite far ahead of the twins developmentally, which is to be expexted. I did call Alissa today, though, and told her we need to visit with her daughter more often because she made such a good impression on Eleanor. How do I know that? Because today at my grandma's house Eleanor rolled over for the first time! I was so excited I think I squealed. She has done it one other time since, but is always trying. She also can keep her head up at 90 degrees very consistently and is starting to push up on her arms. Adam is still at about 45 degrees, with little bursts of 90 degrees, but he is so much more vocal than Eleanor. He squeals, giggles, and babbles, often sayng something that sounds a lot like, "Hello!" Of course it's not, but it's fun to hear him start to make baby sounds. Eleanor squeels once in awhile, but is not the conversationalist that her brother is.
This is all good news, but on the other hand we have Adam's feeding issues continuing. He often will only eat if he is sitting in the Boppy bouncing, will only take about 4 ounces at a time, and it will sometimes take 90 minutes to get him to take that. He screams at the beginning of the feedings and I think his voice is sounding hoarse. I've decided that I'm going to call the pediatrician and see what we can do for him. It's very sad to watch the little guy so upset.
I went to school this week and packed up a bunch of my teaching materials. I have to go again because one trip with the minivan wasn't anywhere close to enough. I love staying home with the twins and I am so fortunate to be able to, but I miss my classroom and my students--packing up was definitely bittersweet. Hopefully I will be able to go back to teaching part-time in a couple years. I know many of you had spring break--or at least some vacation--recently. The weather has been beautiful and I hope everyone was able to get out and enjoy it!
Next Sunday is our day for Walk America 2006 with March of Dimes. Thanks to your amazing generosity, we have raised $1075 so far! We know that because so many wonderful people have donated to the March of Dimes in the past, Adam and Eleanor were able to survive when several years ago they probably wouldn't have because of their contribution to the creation of surfactant for the babies' lungs. We know that the money we have raised will go to further research and save more babies born prematurely. Thank you again!!

Hangin' Out

This was just too cute, so I had to post pictures. Jim and I were watching Fantastic Four on DVD (his choice tonight, obviously...) with the twins. You can see a glimpse into their personalities with these photos! Eleanor was sound asleep while Adam decided to use the popcorn bowl as a foot rest. Then he put his feet completely into the bowl, so we finally had to move it. I guess Adam like the movie. Yes, he's on the pink Boppy. Whatever is closest!

A Day to Celebrate

Today is the day that Adam and Eleanor have officially been home longer than they were in the hospital! Their stay in the NICU was 98 days, and to day is their 99th day home. To show you how for they have come, I've included pictures of them right after they were born (9/29/05), half way through their stay in the NICU (11/25/05), the day they came home from the NICU(1/04/06), as well as today's photos. They will be seven months old at the end of April--but three months adjusted. At the beginning of May, we go for our first visit to the developmental clinic. I don't know what the requirements are, but I know that all very premature babies go every four months or so until they are 24 months. They will check to see if the twins have developmentally appropriate behaviors, such as raising their heads while on their tummies, grasping objects, and checking to see if their infant reflexes are waning, etc. Mainly I think they are looking for signs of cerebral palsy, which is so common in such premature babies. The pediatrician implied that he didn't think we had too much to worry about. Hopefully, this is the case. Enjoy the photos! (Eleanor is on the left/on top, Adam on the right/bottom)

Oh Adam...

The new phase in the life of raising preemie twins is all about reflux. Specifically, Adam's reflux problems. Eleanor has it a little, but it doesn't affect her eating at all. She is still gaining weight pretty quickly and now weighs 13 pounds 12 ounces. Adam, who used to be our little chow hound is now picky, picky, picky. He cut down how much he was eating to the very minimum and hasn't gained weight for over a week now. Since he was the baby who was gaining a pound in two weeks, this is a bit frightening. I talked to our pediatrician about it--and researched it on the internet, of course, because that's what I do, for those of you who know me well. Anyway, he prescribed Zantac for him. We've been giving it to him for about 5 days now and we have definitely noticed a difference in how much Adam cries during feedings, and afterward. I think this must mean the acid coming up his esophagus has been reduced, so it's not hurting as badly. He still doesn't really want to eat much, though. I think he has been programmed now to think it will still hurt, so he's a little afraid. While reading all this information about infant reflux, I came across a woman who said that it takes 50 good eating experiences to convince a baby that everything is fine now. One bad experience and you have to start all over. Hopefully this will be the solution and we won't have to worry any more. Some babies have really severe problems with reflux to the point they need to be tube fed, so we will count our lucky stars that we only have a picky eater who takes and hour plus to feed. And I thought I wasn't getting much done around the house before! I think there is a load of laundry in the washing maching that has been there for three days. I am certain it's going to have that funky small by now. Oh, well! Adam has now gained two ounces, so wish us luck that things will be looking up this week.
On the happy side of things...Adam laughed for the first time tonight! Now he doesn't want to stop. It is so darned cute. Eleanor loves to look at TV screens, computer monitors, and smiles all day long. She can lift her head up to 90 degrees now, though it doesn't stay there too long. Adam is still stuck at about 45 degrees. They are really starting to interact with us. You can see them with big brother Alex in our family room hanging out on a Saturday night.
Alex went to the one room school house in our community on a field trip this week. He had to dress up in costume to go and made old-fashioned toys and candles and learned about the history of Michigan. I thought I'd include a photo since he looked so great!

Woo Hoo!!! No More Oxygen!!!!

I was so hesitant to even write ahead of time that Eleanor and Adam were going to the hospital Monday night for their MCR. I thought that might jinx it! So we checked in yesterday afternoon and at 7pm they were hooked up to the MCR machine (an annoying thing) and their every breath and heartbeat was being recorded. I should have taken pitures, but I didn't think about the camera with all the other stuff I had to remember. There were two leads stuck to their chests, two pulse oxymeters--one on each foot, and a little white sensor taped below their noses. Each of these things has a wire leading from it plugged into the machine which makes for tricky feedings and diaper changes. It was a long night of almost no sleep--mainly due to the alarms going off because they had squirmed and a lead came loose. They actually slept great. The machine recorded until 7am this morning and the doctor came to see us and check out how it had gone. He looked at Adam's results and immediately could tell us that he no longer needed his oxygen! But Eleanor STILL had some periodic breathing, so they would have to do some more analysis at the office. Well, the nurse just called and the good news is...that Eleanor can come off too! I guess she had 6.4% periodic breathing and they like less than 5%, but her oxygen saturation was so good (97-100%) that she gets to drop it as well. They will still have their monitors for at least three weeks, but I'm glad--just to reassure us that they are doing well without their "O's", as the doctors say. We've never cared that they were on the oxygen--we've just always been so blessed that they even survived that the inconvenience was of no consequence. But now that we are enjoying this freedom that most parents take for granted--and I would have too, had things gone differently--we are just tickled! I hope you enjoy the photos of Eleanor and Adam tubeless and stickerless!

Our First Walk!

You know there is big news when I post twice in one day! After months of staying inside all cooped up and tethered to oxygen tanks, we went outside and took a walk. Eleanor is off her oxygen most of the day already anyway, and I let Adam stay off it for the 20 minutes we were outside. He did well after 40 minutes at the pulmonologist, so I just kept tabs on his coloring and he did great (notice rosy cheeks)! Big brother Alex was most excited and wanted to push them in their stroller most of the way. It wasn't a long walk, but it was the best walk I've ever taken.

Happy Tears

I cry every day. Oh, not because anything is wrong at all! Actually, because I can't believe how much isn't wrong. It's easy to look at Adam and Eleanor now and to think they are "normal". Except for the oxygen, which will probably be gone soon, there are few signs, at least for now, of their frightening beginning. Eleanor will always have her scar on her back from her PDA surgery and Adam has a big X shaped scar on his left calf, I am assuming from a PICC line. But that's it. They eat, they grow, they smile (a lot) and they are doing the things they should be doing for babies at just over 2 months. But we really don't know what Adam and Eleanor's future holds at this point. They have so much going for them--particularly, negative cranial ultrasounds from the very beginning--but their little bodies went through so much, we just don't know. I thank God every day that I have the opportunity to take care of them, to cuddle them when the cry, to change multitudes of diapers, and to clean up the formula Adam spits up on to the carpet for the hundredth time. All we know is that no matter what, we will love them completely. I wish that there would come a time when we could put their preemie beginning behind us for good. But I really don't think that will ever happen. We are so fortunate, so blessed to have 23 week preemies doing as well as they are. Most people don't know much about premature babies--I know I didn't before Adam and Eleanor--but not only is their survival a complete miracle, but the way they have come through this ordeal without any major problems is almost unheard of. I've searched on the internet, I've read a bunch of reasearch. There are few examples of 23 week twins at all, let alone examples with babies with no IVH, no hernias, no ROP, no eating aversions, weight gain already on the charts for unadjusted age, and as of today, reaching appropriate developmental milestones for adjusted age. It almost makes me afraid to think that things will keep going so well. This just doesn't happen. Please keep praying for them, though, like I know everyone has been for the past six months. I really can't think that their good fortune and ours, has not had to do with the incredible amount of prayer said for them over these past months. People sometimes use the term "miracle" lightly--I never will again. Thank you to everyone for all that you have done for us. In our crazy busy-ness we may forget to say anything, but we appreciate all that you have done for us, and for Alex, Adam, and Eleanor. Of course, here I am crying again.
Baby updates...Both Eleanor and Adam are starting to roll over! They can get to their sides, but that stinkin' arm gets in the way and they just don't know what to do with it. Adam is also batting at toys and Eleanor can hold her rattle for while and shake it. I don't really think she knows what she's doing, but I'll take it!

WalkAmerica for Premature Babies: Team Eleanor and Adam

On April 30, Jim and I will be walking at Hudson Mills in Dexter in the March of Dimes WalkAmerica 2006 fundraiser for babies born prematurely. This is obviously a very important issue to us. If you are able, we are hoping you can help us raise at least $500 by donating to the March of Dimes in Eleanor's and Adam's names. Please go to our website at http://www.walkamerica.org/meesh113 to donate. Our family would greatly appreciate your generosity, as well as the families of some many other premature babies who need a lot of help like ours have. If you would like to walk with us, just email me and I'll give you the details! I am going to submit the twins' story and some pictures to be posted at the walk. We will be walking with another family who we met in the NICU at the hospital, so it's a big day for many of us.
Adam and Eleanor are both feeling MUCH better now. I'm quite impressed they were able to fight off their colds as well as they did. We visited the doctor twice, but their lungs were clear--they just sounded awful because their little noses were so congested.
Yesterday the twins recevied their last Synagis shot for the season. It will last until the end of April. In May, we are going to gradually start taking visitors. I know the aunts and uncles will be the first in line!! At the home visit for the injection they were weighed. Adam weighs 14 pounds 3 ounces, and Eleanor weighs 13 pounds. She did some serious catching up in the last two weeks and has started to get the pudgy cheeks, too.
A few people have written to me asking about our schedule (or lack thereof) at home. The every three hour feeding schedule of the NICU is no longer, since both of them are putting on (more than) enough weight. The pediatrician even mentioned that at the next visit we might be switched over to regular formula instead of the higher calorie preemie stuff we're using now. They wake up every morning around 6:00am. This obviously is some cruel joke for a girl who used to like to sleep until 10. But then they smile at me and it doesn't really matter what time it is. They eat then, and about every 3 1/2 to 4 hours after that. That would be fantastic, except that it often takes over and hour to feed both of them. Sometimes Eleanor takes 30 minutes to burp, and Adam fusses so much that it takes that long just to get him to start to eat. They have to burp--because if they don't, they will contribute to what we have christened "The Pond". The Pond is the area between my side of the bed and the dresser where the kids (mostly Adam) often spit up. I should really say throw up. We have to steam clean every weekend. To look on the bright side, I'll be able to get new carpet sooner than I had thought! Around the 9pm feeding, the twins both go to sleep. This is pretty much a sure thing--which is great. They sleep in their bassinets still in complete darkness--I want them to know it's time for sleeping. The longest strch of sleep we get is 5 hours, but most often it is three or four hours. We wake up at least once, but often twice during the night to feed them and it starts all over at 6am. I don't know if this is how things usually are for people who have one baby or not, but since they are on the same schedule, it's not that bad. My hope is that they are sleeping through the night in two months... I'll let you know.

Achoo! We've Been Sick

Even with all our precautions, Eleanor and Adam have caught their first cold. Since last Monday, Adam has been stuffy and has become progressively more congested as the week has gone on. Eleanor just started showing signs of having a cold last Thursday. I'm really bummed about this, not only because it's awful to see your babies suffer, but because we have been so incredibly careful about having almost no vistors all winter long. I absolutely love our pediatrician, and he saw the twins this morning. He said they are actually doing quite well, considering their situation, and the cold has not moved to their lungs, they have no fever, and they are still eating. (Adam give up eating? Never!!) Unfortunately, he also said this will last another whole week. That's fine as long as things just get better from here. Please keep them in your thoughts and prayers that they don't get any sicker.
The pediatrician also plotted both their weights on the growth charts. For 6 month old babies, Eleanor is at the 5th percentile and Adam is at the 10th. This is their unadjusted weight--which mean they hit the growth charts by only 6 months, instead of 2 years! This is good on one hand, but not so good on the other. Their length has not caught up at all--which is typical--but makes for very chunky babies! Since they were premature, it's my understanding that the doctors don't mind a little extra weight, since it helps with growth of other organs like lungs, too. But this does mean that their diet will probably change by their next appointment--perhaps to regular formula, or maybe to a less concentrated preemie baby formula. Any way you look at it, I'm just glad they are growing.
Hopefully, when I write back in another week, they will both be much healthier and I will have all good things to share.

Waiting and More Waiting

We visited the pulmonologist today. He is a great doctor, but the wait in that office is something else. So that we wouldn't have to wait out in the regular waiting room, exposing the kids to a host of diseases, we waited in the main nurses office. She had just come back from California, so she had a lot to chat about. Anyway, it comes down to the fact that both Adam and Eleanor will have multi-channel studies done (again) at the end of March. We will have to be admitted to the hospital and they will hook them up to all the monitors. If all goes well then, the oxygen and monitors will be discontinued. This does mean that we get to visit our friends in the NICU which is just down the hall, so that will be fun. Adam has really surprised us with how well he is doing off of his oxygen--I can hardly believe that he and Eleanor might come off it at the same time. It'll be nice to be able to move around the house with them without dragging the oxygen, as well as getting those giant green oxygen tanks that look like submarine missiles out of our bedroom. They were also weighed today--Eleanor weighs 12 pounds, and Adam weighs 13 pounds 7 ounces. The doctor said he was "impressed". I am impressed with both of them, too!! They are such little troopers.

Feeding Issues

I don't know why--probably because I mentioned how much our kids love to eat in the last post--but both babies are really being difficult when it comes to eating all of a sudden. When they get hungry, we bring out the bottles, feed them until they give us the little signs they need to burp, burp them (this can be a 45 minute process in itself), and then try to start to feed them again. They both bat the bottle away, cry, gag, and do just about everything they can to not eat. Than after a minute or two of struggle, they start to eat again and finish the bottle. Strange. We know they are still hungry, so we aren't sure what is going on. We are persistent though, because we want them to continue to gain weight. But what a pain. Once in awhile Adam will decide to throw up his entire bottle, too--but that's another story. Hopefully this is just a phase.
We will be going to the pulmonologist again on Tuesday. I don't know what to expect, and I hate to predict, so we shall see on Tueday morning. They will also weigh Adam and Eleanor at that appointment. It's always fun to see how much they've gained.
Adam has really started to lift up his head when he's on his tummy. I have a couple terrible pictures, so I'm waiting for a better one to post here. He's great at tracking objects above his head, and really watches you when you talk to him now. He's got a great grin, and sometimes lifts one eyebrow, which is hilarious! Eleanor is just great at lifting her head, and even lifts her chest a little now. She has started smiling in response to me talking to her almost all the time now, and I think she's beginning to make little baby sounds as well, other than crying, of course. Both of them have tuned into the feeling of being held and cry to have someone come get them now--not just for wet diapers and hunger. I really like this since to me it seems like they are noticing their environment more and more. Eleanor is particularly good at this and often ends up taking naps laying on her mommy. I can't help it--she's too cute.

Photo Op

Not much new this week, but I wanted to post these fun photos we took today. Since we don't get out much, we don't have much reason to dress up, but it's fun once in awhile anyway. Check out Eleanor on her tummy. She's got her head way up there now!

Big brother Alex has been sick for the last two days, so the poor kid has had to stay in his bedroom to make sure the twins didn't get sick. Of course, he has tons of toys in his room--k'nex, legos, his electronics kit...--plus we hooked up the TV and VCR just for these few days. We aren't big fans of little kids having TVs in their bedrooms, so this was a big treat for Alex. I think he watched every Disney movie ever made. Thank goodness he is feeling better today. He and "ShooShoo" as he calls me, went to Henry Ford Museum. We go quite a bit and he just loves it. There is a picture of him there, too, since he's so cute!
On Tuesday, Adam and Eleanor got their Synagis shots again. Once more at the end of March and that will be it until next fall. They really weren't so bad--one big scream and that was it. The nice nurse brought sucrose to put on their pacifiers, so that made things better. She also had to weigh them to determine the dosage: Eleanor weighs 11 pounds 2 ounces, and Adam weighs 12 pounds 7 ounces. If they each gain about two pounds in the next month, they will be at the fifth percentile for weight on the charts! They like to eat--what can we say?

What a Week

We have had a crazy, slightly scary, exhausting week. Eleanor spit up and choked on her feeding on Saturday night. She was bright red, eyes popping out of her head, gasping--I even had to turn her over on my arn and give her a couple pops to the back. When she could finally breathe again (seemed like 20 minutes--probably was 1) I held her for the next hour. But when I put her down to sleep, she set off her apnea monitor three times in a row. I called the doctor the next morning, and they didn't like the sound of that, so they had us go to the emergency room where Eleanor had an x-ray and was admitted. The film was clear, thank goodness, but that wanted to observe her overnight anyway. They ended up doing an MCR (sleep study) on her to check her breathing, and since we were there, to see if she was ready to come off the oxygen. She was fine the whole night, but still has 12% periodic breathing, even though her oxygen saturations are fine. So we came to a compromise: she can be off of her oxygen whole she's with us, but when she is put down to sleep, she has to have it on. This is great because now I can actually walk around the house with her. We've been pretty much tethered to our bedroom since January 4, so this is a real treat! The only problem is that Adam hasn't been checked yet, so he needs to stay on the oxygen all the time. Walking around with Eleanor, but leaving Adam in his bassinet causes much guilt--so we don't get out of the bedroom as much as you would think.
Adam has also had his issues this week. On Monday, he started breathing rapidly (60 times a minute--you try it--it's worse than it sounds) which can be the first sign of a respiratory infection. Once again I called the doctor and into the office we went. His pediatrician listened to him and said he doesn't hear anything in his lungs, he has no fever, and is still eating a ton, so we'll just watch him. On a positive note, the doctor weighed him and he's now 12 pounds!
Our pediatrician plots the twins' growth on a regular growth chart--for their actual, not adjusted, age. This means that Adam is very close to being in the 3rd percentile for weight for all 5 month olds. Eleanor is as well, since they don't expect girls to weigh quite as much. I am hoping that by eight months, both kids are solidly on the regular growth chart. On the preemie growth chart, Adam is off the top!! An Eleanor is at the 98th percentile. Thank goodness they like to grow--their lungs are growing then, too.
Unless something comes up, we don't have another doctor's appointment until March 14 when we see the polmonologist again. By then, I am assuming both kids will be off the oxygen. But I've thought that before and it hasn't happened--I shouldn't jinx myself. Then we have immunizations again at the beginning of April. Five more shots...I don't remember getting nearly the number of shots that babies do today. I guess it's a good thing, but screaming babies who are cranky for the next 12 hours is not my idea of a great time.
Both Eleanor and Adam have started smiling much more often--and Eleanor even does it in response to my smile! Only problem is, then I start crying right away because it's so sweet. I'm sure she's getting confused--Mom is messing with her head already.

Here are a few pictures of the nursery. I went to Pottery Barn Kids last week and finished off the room iwth the rug, thanks to some gift certificates given to us at the showers.

Tummy Time

Eleanor would like to share her great tummy time success with everyone! She is getting stronger all the time and can lift her head up a little more every day. Most of the time, she really likes to be on her tummy--so much that she often will fall asleep in the middle of "tummy time". We can't have that, so she gets flipped back over then, but if were up to her, she would always be on her tummy.