Friday, March 31, 2006
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.
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!
Tuesday, March 28, 2006
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.
Monday, March 20, 2006
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.
Tuesday, March 14, 2006
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.
Wednesday, March 08, 2006
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.
Friday, March 03, 2006
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?