Archive for April, 2006

Bittersweet News

April 27, 2006

If any of you watch the channel four news, you saw the story tonight about the two month old who got a heart transplant. Ben was in the same NICU room as that baby at Children’s. It is very good news to hear about that child, and know that he can go home soon. It’s very bittersweet to see that, and know that he will recover and lead a somewhat normal life, when Ben’s life is still full of unknowns. It also makes me realize that if we had decided to go with heart transplant for Ben (it was really the only “good” option, and it was really not so good…as you readers know…) he would have still been at Children’s. He would be later on the list than the baby who got the transplant recently. We also don’t even know what kind of chances he would have at being a good candidate. It makes me wonder what two whole months in NICU would be like for us…a week drove me crazy and made me ache to leave him every night. It is exhausting to be there, to see all the other families, to go in and out, scrubbing in each time. Knowing I have to leave Ben at night. Having to hold him around all the lines and monitors he was hooked up to. Ben could go tomorrow and I would still never trade one single day of his “home time” for all the time we had i n the hospital. Not once have Scott and I doubted what we decided to do for Ben, and it seems like there is always something new to remind us how right that decision was.

On a lighter note, we were out for a walk last night and ran into our neighbors (who also just had a baby). Apparently they were talking to someone else in the neighborhood who referred to our street as “fertile”. Kind of funny, since not only do we have a new baby, two of our neighbors do also. Must be the water. Haha

To cheer you up, there are
more pictures

A quiet weekend

April 23, 2006

Ben has, indeed, recovered from his “Uncle Fuster” stage, which makes me happy. And him too. 🙂 After being at home with him on thursday and friday, I got out on friday night with friends from work. I also went out yesterday (grocery shopping) and went scrapbooking last night. The two days alone represent the largest chunk of time I have been away from Ben, and it was kind of weird. I know that Scott takes great care of him, that is not the concern…it’s just so strange to not be with him all the time.

I think that part of the fussiness stemmed from the fact that for the past two months, we let him sleep when he wants, and when he is awake we always pick him up and talk to him. I think that this is only good for him, but it also means that he is used to sleeping whenever he wants…as he grows, he has no set time for resting every day. Friday I put him for a nap in his crib (spoiled boy usually sleeps in the living room in his pack and play or on a lap). The crib and a day that has slightly more structure to it may help him establish a nap time or at least some quiet time. Ben is starting to sleep “though” the night…he’ll usually fall asleep at about seven, then we feed him one last time at eleven thirty and he is able to make it to about five or five thirty before he needs to eat again. Scott and I are also working on feeding schedules since he has gone back to work…who feeds at what time. I used to be a night owl, that was before I had a job that required me to get up at five thirty or six….neither Scott nor I are used to staying up late, so the eleven thirty feeding is tiring. Especially since it means we won’t get to sleep until twelve thirty, because Ben takes an hour to eat. This too will work itself out.

It is getting harder and harder to remember that Ben’s time here is limited. When we brought him home, we had decided that we wouldn’t use the video camera to record any movies…and I thought that I wouldn’t make any scrapbooks for him because it would be too hard. Now I am scrapbooking like crazy, thinking of buying him some summer outfits, and we are making plans for summer vacations already. All of this is mostly good, because it means that we really are LIVING with Ben, which was the original plan anyway…but there is a small part of me realizing how incredibly painful the outcome will be, and how that looms larger each and every week that passes. What else can we do but just be blinded from that by Ben and his incredible-ness?

I took some pictures of Ben playing this morning…he is starting to reach for things and grab on to them. Also, once he has something in his hand, he is able to bring it to his mouth for a little gum-action. It is the COOLEST thing to see him change each day and watch what comes next. This morning, as he is sitting on Scott’s knees, he is able to bring his head back to center when it falls to the side, or tilt it back slightly when it falls forward. He is getting so much stronger every day. Sometimes when he is laying on my chest he will pick his head up at a 45 degree angle and look around. We are seeing a few more grins and smiles….and he is A LOT more vocal. He’s going to be just like his Mom and his Aunt Karen….really talkative. We are getting more than just cries and grunts now: there are some coos and gurgles in there. 🙂

Today’s picture installment

wooooo hoooooooo

April 21, 2006

Well, gentle readers, Scott went back to work this week. That means for the first (extended) period of time ever, it was just me and the Ben-ster hanging out at home. In some kind of grand Karmic retribution for something I did (maybe I was mean to moms at some point? Scoffed at the idea of childbirth and family life?) Ben picked wednesday and yesterday to be fussy. What is he fussy about? WHO KNOWS….He is the most mild-mannered child on the planet. All day yesterday I could not set him down. If we played on the floor, he fussed, tried to sleep, fussed some more. If he fell asleep in my arms and I put him in the playpen to TRY for a nap, he cried. All moms know this drill: he was dry, he was fed, he was warm. His left eye has been very red on the lid, and watering like crazy. I can’t see anything in it, and the last time he had a blocked tear duct he didn’t cry. It’s just the mystery that is Ben.

So yesterday morning, I woke up at ten to six to feed him, intending to get my last hour of sleep after he ate and fell back to sleep. Nope. So I figured, well, that’s fine, it’s no earlier than I get up for school most days anyway….. Then we had the velcro baby all day…each and every time I sat down to feed him Tas would start yowling or doing something he wasn’t supposed to. I did take Ben for a a walk, knowing the stroller would put him out, so he slept a half an hour all day. He was, of course, cranky, overly tired (didn’t help the fussy any…) and generally disagreeable by the time the day was over. By the time Scott got home, we were all a little nuts. Bless his heart, he stayed up to feed Ben the late feeding while I went to an early bed. See, if he was a “normal” baby, I would just think he’s fussy. But I worry that there is something going on that I can’t tell, and I can’t fix it. Maybe he is just being fussy. *sigh* If he were just awake all day, that would be okay…but I can tell that he needs to sleep and can’t. If he falls asleep and I put him down, he wakes up and cries. This is a totally new thing that I expected with a baby, but didn’t expect from Ben. Honestly, he’s so laid back! That’s what makes me wonder if something is wrong.

Have I mentioned that the cat (that would be Tas of the yowling and getting into trouble) has started acting out because he’s not getting as much attention? That’s what we all need. 🙂

I got out of the house for some fun this week; I went to lansing to see Sue and Meli…that was a ball. I think tonight I”m going to meet some people from school to celebrate the beginning of my “no paycheck” leave from work. No payday for me today!

Gotta go, uncle fuster is awake. 🙂 Nurse Kim is coming today, we’ll see what she has to say about this.

You Look Lovely in your Bonnet….

April 17, 2006

What a whirlwind weekend for Ben! Tell his parents that they can take him out and look at what happens, we really hit the town.
Ben had a wonderful weekend….saturday was so nice that we all spent some time outside playing, walking, gardening and generally soaking up the sunshine. It’s probably good for Ben that Scott and I like to go outside so much, I’m sure the fresh air is good for him.

Sunday was the much awaited brunch at the Dearborn Inn with Nana (Scott’s Grandmother). We go every year, and always look forward to it. Ben was positively resplendant in his adorable outfit (see pictures, end of entry)…I know you have all been waiting to find out what the outfit was. And for those of you wondering…I may be a typical mother (dressing my son in a sailor suit, even though I know if he had a say he would HATE IT)…but I’m not a crazy one (no pirate suits for him). Pirate outfits on Easter. Honestly, people, pirates are clearly only suited for christmas morning. 🙂

But I digress. Everywhere we went, Ben got attention. I know, all babies are cute…I DO understand this. But allow me to think, as all mothers do, that my baby is the cutest. Just for a little while longer. Women everywhere swoon over him, it’s really quite a sight.

After Brunch, we went home just for a few hours, to rest and give Ben a little nap. Easter evening found us traveling to Rick and Karens to visit them and to see Rick’s mum, it was her birthday and Ben was the suprise. 🙂 She didnt’ know we were coming. Ben was quite the party stopper, and Scott and I were informed that as long as Ben was there, our presence was no longer required. 🙂 I’m telling you…swooning…lots of swooning.

So after a big day Sunday, we went out again tonight for Dinner for Grandpa Corliss’ birthday. Ben really is traveling much better now, and it’s nice to be able to take him out. Call me overprotective, but we are still pretty wary about who holds him when we are out. I don’t want to appear totally germ phobic, but I don’t want to be foolish either. All heart problems aside, Ben still is only two months old, and we don’t want him to catch something. So, when we take Ben on adventures, we are careful about everything.

The nurse came today, also…Ben weighed nine pounds two ounces. Before long, he’ll be looking for a career as a pro wrestler. Maybe he should learn to roll over first.

I know you are waiting for pictures

Answers, kind of….

April 14, 2006

I know that lots of people have been waiting to hear, and we did finally see the cardiologist today. We had an 8:15 AM appointment at Children’s Hospital. When we went in, Ben got an EKG done first (which prints out a picture of his heart rhythm, for those who have never had one); and then he had another ultrasound of his heart. Scott and I got to see the pictures, and the ultrasound tech was great about telling us what we were looking at. Honestly, I don’t know how you learn to understand those things…it all looks black and white and fuzzy to me. 🙂 Ben did lots of flirting with all the ladies (Typical, just typical) and even batted his eyes at Dr. Petterson (his cardiologist) a few times.

Here is what we found out. The fetal duct (Ductus Arteriosis) in Ben’s heart that was supposed to close (if you are not sure how this works, go back a few entries….there is a full description as we understand it) did not close completely. What does this mean? Well, the third heart defect is the constriction around his aorta (this is the artery that supplies blood to his lower extremeties). This is very very severe, so we originally thought that the lack of blood to his lower half and the fact that his heart would have to work so much harder to compensate would lead to his decline. The partially open fetal duct, along with the constricted aorta are kind of doing the job right now, hence Ben’s plateau phase. The blood pressure in his legs is much lower than the blood pressure in his arms, and the doctor said it is harder to feel a pulse in his femoral arteries (these arteries run along your leg. You can feel the pulse here when you feel where your legs meet your body). From this information we can see that there is less blood going to his lower half, but right now his body is compensating for it okay. The other two heart defects are doing what we knew they would. Your heart is designed to keep blood that has oxygen in it seperate from blood that has no oxygen in it yet…the two heart defects within his heart (the hole and the common artery coming off the top) mean that the oxygenated blood and the non-oxygenated blood in his heart get all mixed up. This means that his heart has to work a lot harder to get the blood with oxygen delivered to his body. This is why Ben breathes a lot harder from time to time, and turns blue. Nothing about the anatomy of his heart or the heart defects has changed, and we did not expect that it would. Scott and I had kind of thought that something like this was going on (something like this meaning the duct not closing or not closing completely). All three heart defects are still there, they are not going to get better, and they have not changed. Surgery is still not an option. What has changed is how Ben’s body is dealing with this…it is not what we expected.

What happens now? Well, pretty much what has been happening…we live our lives with Ben to the fullest extent we can. Dr. Petterson said (as hospice has said, and as we have been doing) to let Ben direct what we do. If he is doing well, then take him out, go places, have fun. If he is not having a great day, then stay home and make him comfortable. We know he is doing better in the carseat, so it is easier to take him places. It is unlikely that he will see his first birthday, but again, with Ben, we just never know. The unexpected is commonplace with him. The Doctor said that most likely there will be some event that will push Ben’s heart into a decline. It could be that he has a choking or coughing fit while eating, that he gets too tired, that he catches some virus or bug that makes him sick. Eventually his heart will just decide that it doesn’t want to work this hard anymore, and it will gradually stop doing the job. We do not know what will make this happen. Scott and I have decided that we will not let this stop what we do with him. Ben deserves to be treated like a normal kid, and we brought him home to live, not to be a china doll that we tiptoe around. So for now, we can live with him and show him this great world.

So what was the first thing we did? We went to fish fry, of course. 🙂 Ben, Scott and I met the family for fish tonight (happy Good Friday!). Ben had a great time…well, he slept…but it was good to get out. We are excited to go out on Easter. Tomorrow will be a quiet day at home.

how could we not put in more pictures?

Baby Ben in a blanket and burgers on the BarBQ

April 11, 2006

As I write this Ben, who has been sleeping all day, is wide awake in his bed talking to us through the monitor. So much for trying to get him to sleep through the night.

Just a quick update today with pictures (as promised). Nurse Kim stopped by today, and the biggest news is that Ben gained TEN OUNCES last week! He now weighs eight pounds, thirteen ounces…which means he has gained over three pounds in the seven weeks since he was born. We can actually see some of those healthy baby fat rolls on his wrists and knees now..he is starting to fill out nicely. We have switched him to a larger size nipple on his bottles, so that he can eat a little easier. He gets so tired trying to eat that when the formula comes out faster it is easier for him to get what he needs before he gets tired.

I have purchased THE CUTEST outfit for Ben for Easter Sunday. I have to take advantage of the fact that Ben is still too young to have a say in what he wears, and dress him in whatever I see fit. You’ll have to wait for pictures, but for now I”ll just give you a hint: ahoy!

For Ben’s seven week birthday today we had burgers on the grill and ate outside in the beautiful weather. Scott and I also took him for a little walk last night and today. He loves his stroller!!

see the pictures here

Spring has sprung

April 10, 2006

The weather has been so great for the past couple of days, we get Ben outside when we can. He is a little unsure how he feels about the outside, because it is so bright..he’ll learn to love it. 🙂
The list of questions for the cardiologist is growing, and we are getting very excited to see him on friday. After weeks of being off work, the days seem to fly by. I’m sure that this week will be crazy slow, just because we have something to look forward to. I put my head on Ben’s chest today to hear his heart, and instead of the familiar lub-dub, his seems to have a triplet beat (you musicians will understand that…). It’s so different! I sometimes wish I could have Xray vision to see what his heart looks like and watch it work.
Scott made some phone calls today to the Walled Lake School District to begin the process of getting Ben some resources to help him develop. Early intervention, starting with an assessment at home, can start now. Formal work with Ben by a physical therapist, will start at about six months. There will be some things we can do in the meantime with him. Just this week Scott and I were eating dinner and Ben was in his Pack and Play…we watched him reaching for his favorite toy (I think you’ve met Senor Elephanso in the previous pictures). I am not sure if he was reaching, if he realized that his hand made the little bell ring when he moved it, or that he is starting to put everything together, but he is definately more aware of his limbs and what they do. Watching him change is the most fascinating thing!
Being present, being with Ben without my mind racing a million miles ahead is one of the hardest things I’ve ever had to do. The original plan when I went back to work in September was to have him enrolled in a day care or in-home care, but obviously with his heart that may not be a possibility. The few weeks I have to go back in May will be no problem, my mom is helping us out. We are starting a search for in-home care for the fall, maybe by a pediatric nurse or nanny? All of you who want to help, please pass along any resources you might have. It is extremely stressful to think about leaving him. I know, I know…moms everywhere are saying “it’s always hard”…but you should be me. 🙂 I have to remember when I’m holding Ben and playing with him that he is all that matters. I have to be present and not worry. It’s like asking the sun not to shine, asking me not to worry….but I know that the best thing I can do right now is to let that go and be Ben’s mommy. I don’t want to think “he won’t be here in september, so don’t worry about it”…I want to think that I have to make plans, and I want to make good ones.
Enough deep thoughts. The sun is still out, we have all eaten dinner, and it’s time for a walk around the neighborhood to see what’s in bloom. We didn’t get those spring peas in the garden today, we spent too much time with Ben (is that actually possible?). Maybe tomorrow.
Incidentally, tomorrow is Ben’s seven week birthday! Happy Birthday Ben!!! Next tuesday he is two months old!!!
No new pictures today…tomorrow or wednesday, I promise!!!

On The Road Again

April 6, 2006

This week has been an eventful one in Ben’s life. We tried the carseat trick using a blanket behind his neck for support, and it worked okay. We are able to take him out on small trips now. Nothing too large, but we did get out to Costco earlier this week, and we went to Grandma and Grandpa Corliss’ house today for a visit. Ben visited, Scott and I took our neice to see the lambs at the farm, then went out to run errands.
see Ben’s carseat get-up and read more

Read all about it

April 3, 2006

Scott and I were talking today about how many people are reading this journal that we’ve never met, and we wonder what they know about Ben. I thought that it might be worth the time to sort of write out how we got where we are, and the time line of what has happened in Ben’s short life so that you can all know where we have been and how we got here.
read about it here