Rose is doing fine. More like herself everyday and in some ways she seems stronger than before her surgery.

We hung out indoors all weekend huddled around the AC. It will be nice when the heat breaks and we can venture out. Although Cheryl and Erin did go roller blading.

We did make it to church on Sunday and a quick ride back to the hospital garage to pick up the other car, not quite la vida loca but it’s a start.

Another Rose mystery; She seemed to be sleeping nonstop since they put her on the methadone on Thursday. Friday evening we called Dr Heller (cardiologist) and told her Rose was sleeping an awful lot. Dr Heller said to hold off and let her wake up some. Let her shows some signs of discomfort before we give her any more methadone. Well, Rose was awake more then 1/2 the day on Saturday and most of the day on Sunday and Monday and sleeping pretty much her normal time at night but no withdrawal signs, so no more methadone. Whatever.

We have asked Joe and Liz to be Rose's godparents and they have graciously accepted.

We are also tentatively planning a big open house party back at our house afterwards but we'll have to see how much of a hub-bub Rose can stand. Although, if she continues to make improvements like today, she'll probably win the limbo contest.

Rose was having one of her first really comfortable days on Tuesday. I kept calling Cher getting updates - she's doing great - she's smiling a lot - she's having great feeds. That night things went fine until after Rose's midnight feeding. About 1:30 am Rose started fussing and wouldn't settle down. She was sleeping in a bassinet in our room because of the heat and we've got the AC in our room. She was getting more and more agitated - she threw up - definitely not a little baby spit up thing . It took us awhile to figure out what was wrong, eventually, about 3:00 ish - Cheryl noticed that her G-tube looked funny. She noticed that it was starting to back out. Cher tried to deflate it and slide it out but it wouldn't go and Rose was protesting pretty loudly (I'm always amazed at moments like this how Erin and Kate seem to be able to sleep through anything). We were getting ready to figure out how to get in to the ER. Cher went downstairs to check on the phone # for the Dr. I was putting Rose onto the changing table when I noticed the G-tube had fallen out. Maybe Rose pulled it. Cher came back up and put the new tube in. She gave Rose some Ativan and eventually she settled down and so did we. Back in bed at 5:00 am - asleep at 5:01 - up at 7:00 - drink 6 cups of coffee and manage to stay awake - although I think we were both having a hard time completing sentences.

When the Dr's office explained how it might go if her G-tube fell out it didn't seem like it would be such a big deal. Oh, well ...

Wednesday was another great day - Erin went to Riverside park with friends (what's the minderaser and heckevator ?) but the rest of use went on a big trip around town - Kate on her bike - Cheryl rollerblading - and me pushing Rose in the stroller - probably close to an hour. Generally a nice getaway. And then last night Rose slept through and both Cher and I got more that 6 hours sleep. Life is good.

Tuesday is Rose's 1st post hospital check up at the cardiologist.

Rose also had an x-ray of her lungs. Dr Leopold said they looked great. There was any area on the tops of the lungs that wasn't opening up when she was in the hospital but had since cleared up nicely.

Rose's next visit with Dr Leopold is in about 5 weeks.

We also got a stopped by the PICU and visit all our friends there. We really enjoy giving them all a chance to hold Rose for a few minutes. I can't imagine a better feedback for a job well done.

Rose is doing well. Except for one rough night where we were trying to get Rose on a new type of formula things have been pretty quiet. That night it really didn't agree with her and she ended up spitting up and pooping for half a day or so until she got settled down. After numerous suggestion from her pediatrician, Rose finally found a formula that she's comfortable with and things are back to normal - general contentment - sleeping through the night - that kind of stuff.

A good sign that things are getting under control is that I finally bought a new PC (with a scanner). I could actually think clearly enough for a long enough period of time to complete an order. This means there will be many more pictures coming of Rose and her family.

A quiet Tuesday night was a big milestone. The last two were a little more exciting than we needed. 2 weeks ago her G-tube fell out. Last week she told she didn't like her new formula by throwing up all night. So last night we were expecting something new and different to happen ... but nothing did happen. In fact, Rose slept late, until 8:30.

Rose is weaning off the breast milk. For the first few week after the surgery she was getting 100 % breast milk. Since last Tuesday we've been mixing it with formula, more formula and less breast milk. The formula she's been getting since last Wednesday has been agreeing with her well. I think in another day or so she should be on 100% formula.

Rose is still using her G-tube to get a big percentage of her nutrition. Although she would show some interest in breast feeding, she has never really taken off with it. She definitely doesn't want anything to do with a bottle. Although she does like her binky. Apparently all combinations of these types of reactions from infants with Down S is not to be unexpected. Some kids take to a bottle. Some kids keep taking fluids through the G-tubes even after they start eating solid food. Apparently its easier to figure out how to swallow solid food then fluids. So Rose could have a G-tube for quite some time. (not that there's anything wrong with that). We've heard stories of kids having them through 8 months to up to 2 years. Or, who knows maybe she'll surprise us and decide to something completely different. It's not like that's never happened.

Attached is the party poster with all the details. It's August 15th starting at 3:00 pm.

Rose today:

Rose had a weigh in because Cheryl had to make a stop at the pediatrician. Rose has put on almost a pound in the last two weeks. She's 11 pounds 11 ounces. (oh, by the way, the reason for the unscheduled visit to the pediatrician... Erin... she had a swing set mishap last Thursday. She has a broken toe. Apparently my diagnosis was off. I figured if she can run on it, its probably not broken, wrong. Tomorrow she finds out if she gets a cast, probably not.

We just got a roll of film back...

She still uses the G-tube to get most of her feeds from. Although she has been eating some cereal at a couple of feeds a day.

Physically she's getting stronger and more active, her head neck control is starting to come together and she's starting to roll a little bit.

She's still doesn't nap too much during the day, just 1/2 hour cat naps but she does sleep through the nights, 9:00 pm to 7:30 am, so we're not going to be doing any complaining.

Just a reminder .... remember, no gifts. Rose is our 3rd child and she does have 13 1/2 cousins so she's pretty set with some pretty nice hand-me-downs. In fact, the hand-me-downs that she's using are better than the stuff we bought our 1st 2 kids. Think of it this way, Rose has 4 grandparents and 16 aunts and uncles. The gift giving so far has been thoughtfully restrained. If the gift giving floodgates open we could be swimming in beanie babies and stuffed animals.

For the attachment impaired, here's the Rosefest '99 info again:

Come to our Open House party to celebrate Rose's life

Sunday, August 15th, from 3:00 pm on

Bring your favorite appetizer, snack food or drink or just come to visit

Just a reminder - no gifts, please

Seriously, that was a one day record for the cable slide and one of the biggest wiffle ball games I've ever seen. Definitely the most kids we've ever had in our backyard at one time.

Rose really enjoyed seeing everybody. We are even considering doing it again next year.

Lost and Found:

There were a few unclaimed items at the end of the day:
1 women's yellow jacket
1 pair of women's dark pants
1 pair of women's dark blue loafers - size 7 1/2 med
1 red polar pack cooler
1 Scoobie doo stuffed animal
1 Ironman action figure
1 Dalmatian dog figure
1 small clothe doll

(I honestly don't remember seeing a naked woman)

Rose today:

Rose had a check up with Dr Leopold, the cardiologist. She did great. He said her lungs sounded great. Her heart murmur was a lot quieter than the last visit. He thought she was doing great. Rose was really showing off the whole visit. She kept trying to roll around on the exam table. You really have to watch her now. She's getting pretty mobile. Her next checkup is in another 6 months.

Afterwards we went to the PICU and got a chance to show off how well she's doing. It’s always great to stop by with Rose and give the PICU folks a chance to see what a difference all their hard work can make. Words can't begin to express our gratitude but hopefully giving them a chance to hold Rose can.

Rose is starting to get mobile. She's got the neck bridging half roll down pretty good. You really have to watch her now when she's on the changing table now. She's still putting on weight at a pretty good pace. I forgot to mention that at the cardiologist check up last week she weighed in at 12 lbs 10 oz. She feels even heavier still. We're thinking of sneaking into the pediatrician for an extra weigh in this week.

There's still a few toys unaccounted for. If anybody recognizes the doll or Ironman let me know. I think I know who owns scooby doo.

Rose has rolling down pretty good now, at least to her right. This would be in the back to front rolling category. She's been starting the top half of the roll for a while by arching her head and back but she wasn't finishing it off with the hip roll / leg kick. (Rolling over is actually much more complicated than I realized).

I've been on vacation this past week so I've been able to spend a lot more time with Rose. Monday was her appointment with her PT. Karen T works on putting Rose through the correct series of motions for things like rolling, crawling, sitting, even before Rose is doing it herself. It gives Rose a chance to develop the strength and coordination and to develop sooner than she would without the extra encouragement. This is part of the "Birth to 3" program that will provide developmental help for Rose until she goes off to the town school program at 3 years old.

Friday night we had my parents over for their birthdays. We had Rose on the floor afterwards to give her a chance to show off, just to show how much energy she has now. Rose took the opportunity to execute her first roll. In fact she did two. Much cheering. She still had her right arm pinned under her but we were calling it her first roll, until Saturday.

On Saturday morning, we had her on the floor again. She was on her back and pretty much immediately went for the roll. Arch the neck, reach with the hands, roll the shoulders and then the swift left leg kick across the hips to complete the baby snap roll. She lands with right arm pinned under her. This time she really starting working on pulling her arm out, head high, rocking a little as she pulled her arm out with all her might. When you see Rose attack something like this, grunting and really digging down deep, you can start to get a more tangible feel for the amount of fight in this kid. She got her arm out after much effort then the heads up and looking around. After a while she started yelling at me (she doesn't cry, she yells), so I rolled her back over on her back. She promptly did another roll. That's how the morning went.

I did pull out our copy "Babies with Down Syndrome, A Parenting Guide" ( a good reference by Karen Stray-Gundersen) to check the development time table. A "normal" baby rolls over between 2 and 10 months and on the average at 5 months. Rose was 6 months and 2 days old. Pretty good considering she lost all that time due to the heart surgery.

Saturday afternoon, Erin had her friends over to celebrate her birthday, kind of an end of the summer party. End of the day, we were hanging out inside with all the moms that came to pick up there kids and, of course we were bragging about Rose rolling over. We put her on the floor to let her show off. At first she was trying to roll to her left, her weak side, and she couldn't quite get it. It helped build the suspense, though. After a while we redirected her to her right side. Rose quickly rolled over, big cheer from everybody.

Other Rose trivia:

Hair color - still not determined - maybe reddish brown (auburn?) Still to small a sample to make a good determination although she is starting to get more of it. There's actually hair on top of her head that you can see from more than 6 inches away.

Eye color - definitely dark although beyond that its hard for me to tell.

Weight - Rose hasn't been weight in about 2 weeks but she's got to be over 13 lbs by now.

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Sorry about the long rambling note. I've been on vacation for a week so I've got some extra energy. By next week I should be back to short, single paragraph composed of mostly incomplete sentences.

The only tricky thing is figuring out how much to feed her. It's not like a normal baby that gets sick and decides it doesn't have an appetite for a few days. With the G-tube feeding, dinner is coming whether she's ready or not. Of course after a few good baby "spit ups" we figured it out.

Really the only thing that's tricky about Rose right now is the G-tube feeding thing. Rose eats every 3 hours during the day. It can take close to an hour to feed her, sometimes quicker. Then about another ½ hour or so when she's what we call "a milk bomb". And then Rose is ready to play or do whatever. Not really as bad as it sounds but it does cut down on how far from home we can travel, with the need to keep formula cold and a quiet place to sit. Actually, it works out well. We always get uncomfortable when we get more then two towns away from Windsor.

Next check up with the pediatrician is a week from Tuesday. So I'll have an update on the baby stats, length, weight, etc. Although she's definitely growing, feels heavier, especially the longer you hold her. And she's growing out of clothes. Rose definitely looks a lot longer.

Yes, even though Rose gets her fluids still through the G-tube, she does eat her cereal. Apparently its easier to swallow thicker cereals then thinner liquids like formula. Rose will probably learn how to swallow her food by eating solids and work her way up to thinner liquids. (Cheryl already knew this from her Rehab nursing work but I had never run across this in my engineering work). Some kids that have had G-tubes will get more and more of their nutrition through solids. Some eventually go right to drinking from sippy cups and skip right past drinking from bottles.

Well, next weeks is yellow veggies and maybe in a month Rose will have worked up to fruit.

Rose is also getting stronger. She sits up pretty well if you let her hold onto to your fingers. She can pull herself up from lying down to a sitting position pretty easily. She has a bath seat that she enjoys sitting in during her daily bath. Rose seems to enjoy water as much as her older sisters. She's a lot like them in a lot of ways, including the cue ball baby hair style. Although her hair is starting to come in a little. I can just about make out a hairline pattern and that's without my reading glasses on.

The pink line on her chest is her scar from her heart surgery. (This is a little more than 2 months after her surgery.) The clear plastic disk on her stomach is her G-tube, the end that goes into her stomach. The end that the food goes into is down in the bath water somewhere (its plugged off)

It’s not that she wasn’t smiling a lot, just never on cue.

Finally captured on film ...

Rose did lose another G-tube last week. It fell out one morning when I was at work. Cheryl managed to put the next one in by her self. Rose got a little worked up but not as bad as the last time. And everything was back to normal in time for her next meal.

Rose is also losing her milk bomb status. The last few weeks we've noticed that she needs hardly any quite time at all after feeding

We've even had baby-sitters for Rose. OK, the record so far is only 30 minutes but we're working on it.

Rose can be quite the chatterbox, too. A lot of random noises with a few dada's and mama's thrown in. She can be pretty expressive.

Other news:

Katie lost her first tooth.

Erin's playing soccer. That's where Rose usually is on Saturday mornings.

We bought our first baby jogger so Cheryl's been able to start running again.

And, of course, don't ever feed your dog chili. It can be very messy

We are getting back into the swing of doing family things. This past Friday we climbed Talcott Mountain and got a nice view of the foliage. OK, Rose didn't actually climb up but she did seen to enjoy the ride in her new all-terrain baby jogger.

Click on the shamrock to see the Talcott Mt. photo gallery

On Saturday we made the Creatures of the Night evening walk at Northwest Park. A nice moonlit walk.

Rose is eating more and more all the time. The little baby food jars are starting to pile up on the counter. I guess we're starting to get confident that she's going to soon be eating enough so she won't have to rely on the G-tube, as much or, hopefully, not at all. Maybe a few more months...

Another nice addition to the baby equipment arsenal is the backpack. On Sunday, Rose fell asleep in it while I was raking leaves. Today, she wouldn't settle down on her own, kept grousing, so Cheryl put her in the backpack so she could get some house work done. I think this kids going to be pretty spoiled or at least well entertained.

Rose has quite the sense of humor. She sits with us at the dinner table in between Erin and Kate. She'll have some toys to play with while we're eating. That's when the fun starts. Rose drops toy on floor near Erin. Erin picks it up and gives it back like a nice big sister. Rose drops toy again. Erin picks toy up again. Rose holds toy out over the floor and watches Erin's reaction then drops toy again. This went on for a while. She's also working on her baby cackle. She's even starting to get some laughing noises to come out.

Rose had a weigh in the other day. She's 26 1/2" and 14 lbs 14 oz. She keeps packing on the weight. Actually she's in the 50 percentile on weight and 75 percentile on height. Although that's for special growth charts for Down Syndrome.

I finally sent this picture out because I kept getting so many questions on whether she ws actually eating or not. This picture is actually from around Spetember time frame. Yes, she’s eating. I realized that is must be confusing to people when I refer to how much she’s eating but not how. I made a note to myself to try in the future to differentiate between "spoon" feeding and "G-tube" feeding.

This is the preemptive holiday e-mail.

Rose had a check up at the pediatrician, Dr Levine, today. She's great, of course. In fact in the last week or so, she seem to be taking her game up a notch. Her energy level seems to be a lot higher. A lot more kicking her feet and pounding her hands on her tray in a "I'm real happy" sort of way. And she can be quite the babbler (I think she gets that from me).

Rose likes to play with Pepper. She sticks her hand out so he'll lick it. In fact she'll wave her hand until she gets his attention. After he starts licking she starts trying to grab his tongue. Fortunately, she hasn't gotten it yet. Cheryl had Rose over her sister-in-laws house. When Rose saw their lab, Rags, she started waving but Rags didn't know how to play the game. I was always amazed that little kids could recognize that different breeds were all dogs. Now I'm more amazed that an 8 1/2 month old can.

Official stats: length = 26 1/2" weight = 15 lbs 7 oz.

She's still about 50% weight and about 75% height (length?) on the growth chart. She's lanky in a baby fat sort of way.

Rose has been getting pretty good at eating. She's worked up to eating fruits and cereals and vegetables and meats over the last few months. (although she doesn't seem to like the meats as much). Rose is tapering off the formula from her G-tube. She still uses it a little to get some fluids but a lot less. Just a little after a meal or for her night time "bottle" before bed.

Dr Levine has asked us to call the gastro surgeon, Dr Haight, some time in January to talk about Rose's G-tube removal . That would be nice.

Another big milestone, Cheryl and I went out Saturday to a friends wedding. Yes, we got a baby sitter. OK, not exactly a regular baby sitter. Rose's aunt came over and then Rose's PT came over to do the 8:00 feeding. But we still get credit for going out. And the next morning, Cheryl was looking at the movie listings in the paper. Another good sign.

So, the whole thing took about a minute. Erin went back to her homework, Cheryl took a deep breath and finished dinner, the gas company guys got our heat back on and we sat down to dinner pretty much on time (not the gas company guys though)

On the less exciting side, Rose is pretty much sitting up, at least for a few seconds at a time. She sits for as long as she seems to be interested and then she dives in some direction. But she's definitely strong enough and does have the balance down, she just needs a good reason to keep sitting.

I've been reading a few stories about families that have been through something similar to us. "Expecting Adam" is the book and the Boston Globe is running a series Click here: Boston Globe Online . The story in the Globe is actually neat because their baby had the same cardiologist and surgeon as Rose. Small world. There's still two more installments to go. I'm hoping everything turns out all right.

But both stories were a little depressing for me because of the pressure brought on both families by some family members of friends to have an abortion after they got the amnio results. In particular, the articles in the Globe have had a lot of information I hadn't seen before. The family in the story really struggled with their decision to keep the baby and there was much discussion about abortions. Apparently 9 out of 10 people that get a Down Syndrome finding from their amneo decide to abort. That sure seems high. I would hope that with all the modern advancements in medicine, people would use them to save babies like Rose, not the opposite. Oh, well. Maybe Cheryl and I just have our own unique perspective from struggling for some many years to have kids. It just didn't seem possible to say, "No thanks, we'll wait for a smarter or healthy baby". We've been fortunate. Some many people have wished us well, prayed for us, helped us. We've never heard a discouraging word. I don't know where these 9 people are. 9 seems awfully high.

The hard part of the story for me was realizing that so many couples decide to not keep their babies, 9 out of 10 seems awfully high. Theses are couples that want to have babies and then at 20 weeks, which is pretty far along, have a test, get some bad news and then have about 2 weeks to decide what to do. And only 1 in 10 decide to keep the baby. I would think in most cases these couples want dearly to have kids but get scared off. They must want the baby if they went through 20 weeks of pregnancy to get that far. When my wife and I found out the bad news, we were scared and hurt and very ignorant. We had no idea what a kid with DS would be like growing up. We were going to keep her no matter what, a determination that’s grown through many years of dealing with infertility and slowly seeing our family grow with the birth of our first two daughters. As it turns out, I think we were ready for Rose. We're lucky. And Rose has been great. She's a baby. They tell you that when you get the diagnosis. That they’re mostly babies and only a little bit Down Syndrome but it’s hard to believe it until you live it. That's the ignorant part. I just wish that a couple facing this tough decision could spend a day with Rose. I think most of those 9 out of 10 would change their minds. They would just have a baby that is a little different from what they were expecting. Our Rose is a baby, first and most. The great thing about having children is the chance to love somebody unconditionally and be loved back the same way. And that's all there.

Rose is also more expressive. More babbling. She makes it sound like she's part of the conversation. She's also waving hi and bye, one handed (that's supposed to pretty advanced). Over the last month or so, she's gotten much better about reaching for and grabbing things she wants. And then of course putting them in her mouth.

Rose's feeding is progressing but she's probably not going to get rid of the G-tube as soon as we were hoping. We thought because she's eating a lot that it wouldn't be long but there's a little more to it then that. Cheryl talked to the nurse clinician at the internal surgeon's office. She said that Rose would have to go 3 months without using the G-tube at all before they would take it out. And that they would like to see them go through a cold or something and recover without relying on the G-tube at all. Basically, the don't want to take it out unless they are really confident that there's very little chance that its going back in. Looks like there's more to this then just emptying a bunch of baby food jars.

Last week at the pedi visit her weight was down an ounce to 15 lbs 5 oz but she was longer at 27". She dropped an ounce since her last visit 2 weeks ago. Not a big deal but more reason to go slow with getting our hopes up about getting rid of the G-tube.

The other day we thought Rose had made a big break through. Cheryl had bought a pacifier with a small bottle attached to it, held maybe a teaspoon. It’s used for giving babies meds. Cheryl put some of Rose's formula in it. Rose loved it, she sucked it right down, emptied it a bunch of times. So we're thinking, this is it, she's mastered the micro-bottle. All we have to do is attach the new, preferred nipple to a regular bottle and we're done with the G-tube. Cheryl came up with a neat mod that adapted to one of the regular bottles. The next day, Cher tried it with Rose. Rose gave it a couple of tries and then spit it out. She must have figured out that this was that thing that she didn't like. Anyway, we're scratching our heads and trying to come up more ideas. For now, its back to the micro-bottle.

All in all, life is good. We're very much looking forward to our first Christmas as a family of five. Merry Christmas and a Happy New Year to you and your family.