Actually we did all that in under 3 hours and that included talking to Dr. Ellison for over 45 minutes. It went by pretty quick without much waiting anywhere.

Dr. Ellison spent a lot of time explaining how he is going to repair Rose’s heart. It sounds like he knows what he’s doing. Even though it sounds like Rose is having pretty extensive repairs done, he seemed pretty promising. He did also explain all the possible complications - a little bit sobering but they seemed low probability.

During the visit to the PICU we got a chance to visit a mom with her 2 month old daughter that was recovering from an operation similar to Rose. She had her operation on Monday and she looked pretty good today. There are a lot of tubes and stuff for the first day or two but after those come out the big thing is recovering from the surgical incision. The PICU is much more accessible than the NICU was at Farmington. The kids are older and a little tougher so its not the same high level of surgical scrubbing. Visitors for the first few days are just parents and grandparents.

The surgery is Monday, the 24th. Rose will be pretty out of it the first day and night but most of the tubes usually come out the second day. We’re not going to bring Kate and Erin in until most of the tubes are out. Dr Ellison said that the length of the stay is 4 to 7 days. Cheryl and I are still hoping to get out in maybe a week and a half.

Well, all we have to do now is keep Rose healthy from now until Monday. Looks like a quiet weekend ahead.

Random parental bragging:

Rose actually rolled over today. Cheryl had put her in her crib for a nap this afternoon. (She does get placed on her side.) A little later Cheryl heard some general grousing coming from Rose’s room. She had rolled onto her stomach. Rose does do a pretty good back arch.

The short story:

Rose spent a few hours in surgery but the Dr's were trying to just get her IV's and arterial lines in place and never got to the heart surgery. Tonight she's pretty much back to normal and we expect here to come home tomorrow.

The long story:

We always forget that with Rose, it's important to expect the unexpected. Once again we got lulled into believing the time table and order of events that the Dr's were telling us. We fell for it again.

Rose went into surgery a little after 8:15 this morning. A much different and nicer experience that her first surgery. Instead of getting carted off to surgery in a special enclosed life support cart we gave her to the anesthesiologist and he carried into the operating room. We then went to start waiting.

We were in our dorm room off the Pedi ICU when Dr Leopold came to see us around noon time. He explained the difficulties they were having in getting the arterial line started. The arterial line is used to closely watch the condition of the heart both during surgery and during recovery. You need to have a good A-line before they can proceed with open heart surgery. That's different than IV's that go into veins. All those went in fine. Apparently another characteristic of Down Syndrome kids is small blood vessels which makes inserting these lines more difficult. I'm a little sketchy on the order of events... Dr Ellison started an A-line in her right groin area that went in fine and then stopped flowing. They tried a number of other sites with no success. They started to get another A-line going in her right groin when they noticed that Rose had lost the pulse in her left foot. That meant the first site had a clog. Dr Ellison had to open up the artery in that area to clean the clot out which apparently went fine. Heart surgeons are also apparently very good at arterial surgery. All of this took a few hours and Dr Leopold and Dr Ellison felt that Rose had been through enough for one day.

Rose came over to the PICU a while after that. Dr Ellison stopped by to discuss what happened. He was meeting with a number of different specialists that afternoon and they were going to discuss Rose's case. Rose spent the afternoon shaking off the effects of the general anesthesia. She did a pretty good job of it but she was getting a little touchy. I think she is sore from being stuck so many times. This is a baby that might cry once a week. Today she was going on a really good crying jag every time the Drs or RNs touched her. Anyway, they say the crying was good for clearing out her lungs. Rose fed pretty well at 5:00 and then I got to hold her for a few hours while she napped. She seemed pretty back to normal after that. Cheryl went home to get a few things and then came back to feed her around 9:00. Rose even breast fed for awhile. She was looking pretty good when I left.

Cheryl is sleeping over tonight. Rose was going to move onto the regular Pedi floor tonight which is nice because there's a bed for the parents right in the kid's room. We expect Rose to be sent home tomorrow afternoon.

Dr. Ellison did come back to talk to us around 5:00. The plan is to try again. Her next surgery is scheduled for June 14th, another Monday.

Thanks for all the kind thoughts and prayers. I am sure they are helping but we are going to have to do it again one more time.

Rose came home about an hour ago. She moved up to the Pedi floor last night about 11:00 and she and Cher had a pretty quiet night. Dr Ellison looked in on her this morning. We're still on for June 14th. After that it was just peel off the remaining stickers and bandages and get in the car seat. That's when things start feeling normal again.

Rose is pretty much back to her old self except for the side effects of being a human pin cushion. Hopefully things will heal up and she'll be able to put on a little more size and weight in the next 3 weeks. In the meantime, it’s back to a normal life of softball and soccer games.

How is Rose doing?

Rose is doing fine. She's bounced back from the mini-surgery pretty quick. It almost seems like she's more than made up for any lost time. Rose is smiling a lot everyday. She's more physical. Plays with toys. Leg strength seems better, she can kick her covers off before you can get out of her room. Rose has also developed that mysterious baby amoeba mode of travel. You put her down and look away for a few minutes and when you look back she has some how moved to a new spot. OK, maybe more than a few minutes, overnight she has gotten her self side ways in her crib a couple of times.

Rose does lead a very busy life. Last Friday was dinner at Bart's. Saturday morning was listening to music with her sister's. Yes, they did play Livin' La Vida Loca at least 15 times. Erin thinks Rose was finding her groove (whatever that is). Saturday afternoon was Rose's oldest cousin's 21st birthday party. Sunday was church. Monday was the Memorial day parade (that's her second parade so I don't think she was that impressed this time). And tonight was watching another one of Erin's softball game.

And Rose's appetite is increasing. When she came home from the hospital she was getting 2 ounces 8 times a day. Now she's getting 3 2/3 ounces six times a day. And sleeping from 12:30 am to 6:30 am.

How are you doing?

You being myself or Cheryl or Erin. I don't think Katie has quite yet crossed that threshold where people wonder how she is doing because she has a sister with DS and needs heart surgery (although Kate is doing quite well)

I think for the most part, we are doing fine. It's nice that people care. We feel fortunate to have so many friends. It has obviously been tough (OK, very tough) at times but I think in general we are all coping very well. There are ups and downs to all our lives. It’s just that the ups and downs have been a lot sharper and more dramatic this year.

And, of course, we are both a little short on sleep, but, hey, we're allowed. She's a baby, only 3 months old. We're supposed to be sleep deprived.

Is there anything I can do?

Well, yes. Practically speaking, we have had a lot of help from a lot of different people keeping things going. If we haven't asked you for specific help its just because we've had offers from so many people that we haven't gotten around to asking you. The odds of you getting a call from us are a little better than winning the lottery. But you are playing and you might win. We are definitely over the shy part about not asking for help. Don't worry about that. It’s the help that we've gotten from all of you that has helped our family life maintain a pretty close semblance of a "normal" life.

Rose had a visit to the pediatrician on Thursday. She was 10 lbs 10 oz. That's a substantial weight gain since her last weigh in on May 21 at 9 lbs 13 oz. That was the Friday before the last heart surgery attempt. She does seem a lot bigger. She definitely doesn't look or feel like a new born any more. Her head control is pretty good although she can get some pretty wild head bobs going sometimes. She grabs at her toys. Her favorite move is a Pete Townsend like arm wind milling action. That can really get those swinging toy things going. We also have to be careful about how close we leave her bottle to her during feedings. Her range with her arm and leg sweeps can be very surprising. Rose also seems to have settled on sucking her left index finger.

So Rose is definitely not a newborn anymore but she's got a ways to go to be a toddler. I can't remember what's in between. Anybody?

We had a little panic Friday morning. Cheryl called me at work to say that Rose's blood work was out of date and that she would have to go in immediately to get a sample drawn. Out of all the tests, this is definitely the most painful one for Rose. She's not a good bleeder and she does not have very prominent veins or arteries, as we know so well. They have to put a tourniquet on her arm. She hates that. It usually gets some good high-pitched  prolonged ear shattering screams out of her. And then it doesn't work so they have to try the other arm.... Anyway, the good news is that they called back and said there bad been a mix up with dates and that her old blood work was still OK and we didn't have to come in. OK....

Well, we have a quiet weekend ahead of us. We need to recover from the rush of school activates from this last week. Just Erin's softball game on Sunday and, oh yeah, our 18th wedding anniversary.

Rose's surgery is still on for Monday, the 14th. We go in around 6:00. She probably goes to surgery around 8:00. The surgery is approximately 5 hours with some set up time before and clean up time after. So, if things go according to plan, we probably won't see Rose again until early to mid afternoon. They keep her pretty sedated the first day and night so she should be waking up Tuesday morning. Dr. Ellison has said that the hospital stay is 
4 to 7 days but both Cher and I have a hard time believing that. We're hoping for the middle of next week.

Believe me, I left a lot out. We had a lot of family and friends watching and hoping and praying with us in the PICU as we all watched Rose unexpectantly pull through and that was all a big help. I think we experienced every emotion know to man over the last two days. I am hoping things quiet down over the next few days.

This is a Polaroid taken by the PICU. We used it to kind of desensitize people that were coming to visit Rose. The tubes and the lines could be pretty overwhelming.

Today was just the quiet day we were praying for. Rose continued to make steady progress. Nothing too flashy but that's OK. Her color has improved and she has been moving around a little bit, doing some arm and leg waving. She squeezed Grandma M's finger today. She even opened her eyes a few times today. The activity is a positive sign but she still needs to stay pretty quiet and sedated while things heal and she mends some of the hurts from the last two days.

She's got a long journey yet to get back home but she took a number of small positive steps today. Her tests on the functions on her kidneys and liver showed they were working fine. She's been peeing great. That's her most important job right now. She has a few lbs of fluid to drop from the last few days. She still looks puffy but things have gone down a little bit.

Its a little unclear how bad the pulmonary hyper tension is. On the positive side her newly repaired heart seems to be handling the extra load OK. And more promising is that the pressure sensing line they have sensing this kept parameter seem to have shifted out of place of is giving possibly a false reading. I'm hoping its way off but its hard to tell right now.

There is some talk of a follow up visit to the OR to finish up some unfinished business. Don't know for sure right now. These things either take a lot longer than you think or happen before you know it. Either way, its not too big a deal compared to Monday and Tuesday.

The PICU at Children's is really a great set up. They have a huge waiting room just outside the PICU that they've allowed us to take over. My dad said that at the peak time on Monday we had 19 people there. Believe me it was a big help. In general, it’s set up really well for visitors.

I'd like to write more but I have to get the kids and head back to Children's for a family dinner in the cafeteria.

Rose had a fair number of visitors today. They were spaced almost perfectly to meet the 2 visitor limit. Aunts, uncles, grandpa, grandma, her PT, a great uncle. Also, a lot of the med people that worked on Rose through Monday night and through the day on Tuesday were stopping by to see how she was doing. All these people that I assumed were serious all the time gave us a lot of smiles and words of encouragement. I lost track of the number of times they called her the miracle baby or comments like that. Cheryl and I got a big boost out of all the kind words. Through Rose's entire life we have met some amazingly compassionate people in the medical business. We've been very lucky.

Another real positive sign is that Rose only has one nurse now, for the last 2 shifts. And sometimes the nurse leaves the room for extended periods of time. It’s the kind of thing where it’s good if your not the one getting the most attention.

Last night the "intensivest" (not interventionist, right Tony?) put another arterial line in Rose's foot. This senses blood pressure real time. This went well. That will allow the A-line to be taken out of her neck. That's tomorrow. She's having a "procedure" done in the OR around 2:30 to clean up a few items. It shouldn't be too big a deal. We're only a little nervous. We'll probably take Erin and Katie out of school early so they can visit with Rose before that. They didn't get a chance to see her yesterday or today.

the medical notes:

Rose started with 13 different limes of drips and meds and IV's and the vent going into her. This is the number that she has to work down to zero. Today two were taken off, Nipride and Epinephrine. The latter is a big one, it helps with heart operation and blood pressure, for her to do well without it is a big step.

Rose is still on a breathing vent. They are using it to give her Nitric Oxide ( not nitrous) @ 80 PPM. This is the primary medication that will help relieve the Pulmonary Hyper Tension in her lungs. So far she's put up with it but still needs to go down. She was breathing 100% O2 when she came back from the OR. It's been weaned down to 43% so far. Room air is 23% O2, so she's getting there. Her O2 sats are always in the high 90's. They’re also over breathing her to help with the PHT. They also tweaked her PEEP from 10 down to 8. (ask a medical person)

interesting side note:

Pepper the dog is getting walked more times than we ever used to. I think he's going to be more spoiled than the kids when this is all over.

They are still weaning her off of some of the meds. Today was pretty quiet except at the end of the day. At 4:00, Dr Ellison came in to perform a procedure, done in her room, they didn't want to move her to OR. He took out a few lines watching pressures around and in the heart. He pulled an A-line out of her aorta and a line out of her left atrium (atrium?). Its good that all lines are now out of the left side of her heart, less chances for complications. It went well, only took an hour. Rose even popped her eyes open for a second around 5:30.

Her pulmonay hyper tension (HPT) also appears to be getting better. She seems to be finally responding to the nitrous oxide. Last night her pulmonary pressure started coming down some. This morning is was about 75% of systemic. It had been more than 100%, that I had seen. By the time I left, it was getting close to 50% of systemic. Dr Como, one of the intensivests, was talking about maybe starting to wean her off the nitric. That's the 1st time we had heard any mention of that. He decided to wait until Monday. There's still one more key surgical procedure to get through. He wanted to wait until after that.

Rose did open her eyes and move around pretty good today. The RN's would say, oh, that's great, OK sedate her. Its a positive sign but she is supposed to stay still until she heals more. We took Erin and Katie out of school for the afternoon so they could see Rose. She's looking a lot more like her self. A lot of the heart / lung machine induced fluid build up / swelling has gone down. Both big kids were happy to see Rose looking more like herself. Erin was happy because Rose looked at her and squeezed her finger. That's what she said was all she would need so she could get a good night's sleep.

Got to go... Cheryl's waiting to go out to dinner ... well, actually, we'll be going to the cafeteria again.

Rose is sleeping pretty comfortably. Both her arms a free of anything so she's able to get into her favorite sleeping position with both arms stretched over her head. Well, actually along side her head. She's still got those short baby arms. She needs to stay quiet and does for the most part but she still manages to gather up a few lines running near her hands. We pry them out and slip some toys into her hands instead. Seems to work so far.

Cheryl and I even snuck out this afternoon for a 15 minute walk around the hospital grounds. Last night we didn't get out to dinner until after the cafeteria was closed so we ended up eating across the street at Friendly's. And tonight we went to a Pizza place on Washington Street. It's very strange. This is the 1st times the two of us have gotten out since I can't remember when. Its also impressing the RN's with our show of independence (from Rose). Actually we were back in less than 30 minutes both times.

Tonight’s my 1st night home. The big girls had sleepovers last night but all the other nights they've been sleeping at home with either Granpa M or Uncle Joe or Uncle Ken sleeping over. That's been a big help. With all the crazieness, at least they've been able to spend some time at home in familiar surroundings.

Erin's and Kate's reactions have been amazing. Erin has been a rock. Her confidence, quiet and unshakeable. Katie has been pretty exhuberant since Rose pulled through. Whenever Katie would see somebody she hadn't shared the news with yet she would yell out SHE's NOT DEAD or SHE'S ALIVE. She's gotten some good laughs and hugs in return. (Thanks, Betsy)

It’s taken a few days for me to get up enough confidence to leave for an overnight. Cher's been coming home for a few hours in the morning to get the girl's up and off to school and I've been coming home in the evening for an hour or so. But other than that we've been staying in our room just off the PICU. It’s not much but it does have two fold out single beds. I think they purposely make them uncomfortable so you only stay if you feel you really need to. But its a big help being able to sleep only maybe 20 feet from Rose's room. It’s nice to be able to pop in the middle of the night or early in the morning to take a look at her. It’s a very short commute, maybe 15 seconds tops.

Tomorrow, we'll be spending most of the day in the usual place. Cheryl's probably going to get a chance to sleep at home. The chance of an e-mail note looks remote but Sunday should be a pretty uneventful day.

Monday's another big-ish day. It's hard to believe but Rose's heart surgery isn't quite done yet. That's why she's considered to still be in critical condition although she is still fairly stable. Because of all the extraordinary measures taken to get Rose out of the OR last Monday it was necessary to leave her chest open. She does look fairly normal, just with a thick betadine-soaked padding covered with a clear adhesive. Dr Ellison had said on Friday that Rose would probably be going back to the OR on Monday to finally get closed up if she has dropped enough of the fluid build up. She has been doing a fairly good job of peeing off the weight build up. We'll have to see what Dr Ellison thinks on Monday. It could possibly get pushed off until Tuesday.

PS. I kind of proof read this one but not really.

My family came for Father’s day. We had a pretty big gathering in the family waiting room outside of the PICU. That’s Rose’s grandpa, uncle, cousin and dad.

Rose finally finished her surgery from last Monday. Dr. Ellison closed her chest at around 2:00 today. We got in to see her around 4:00. Her blood pressure was a little low to start with. Dr. Ellison was considering re-opening her but the other Dr's convinced him to wait and see and it paid off. Her blood pressure slowly climbed back up and by 7:00 it was close to normal.  Cheryl and I are staying over in the PICU again tonight (my brother Joe was kind enough to send this note). If we can have a quiet night tonight we are thinking we'll be able to have one of us stay and only one of us sleep over. I might even have to start thinking about going back to work ... oh, no!!

This is Rose after the last big procedure. The orange chain link is what of the toys we used to put in her hands to keep her from grabbing at her lines. And, of course, her friend Yellow Bear.

They are still keeping Rose pretty well sedated. They still don't want her moving around too much. But we are pressing for when we can hold her. With the drain lines gone it could be pretty soon.

Other thon tapering the O2 and pulling the drain lines today is a pretty quiet day for Rose. Tomorrow they are going to start tapering her other meds, including the nitric oxide for the pulmonary hyper tension. Obviously we are hoping that that's no big deal.

We talked to Dr Lapuck (one of the 5 cardiologist). He said he took another look at Rose's heart yesterday with an echocariogram during the surgery and her heart function looked even better than it had after the surgery last Monday. Some small amounts of valve leakage are even less now that her chest is closed. He also pointed out that her heart is now a week past the surgery so it should be pretty far along in the healing process.

This was something we had been waiting for a long time. We had been able to touch Rose more and more as she became less critical but this was the first time she was healed enough that we could pick her up.

Rose's O2 has bee tapered down to below 40% with no surprises, since Tuesday night. Wednesday they started weaning her off the Nitric Oxide (NO). She started at 80 ppm. She'll go down 8 ppm every 6 hours if things behave themselves. So it will take at least 60 hours or 2 1/2 days, best case.

I was talking to Dr Fischer, intensivest, Tuesday about when Rose would get off the vent. He said because of everything that Rose has been through everything would have to be perfect before he tried. We don't want any surprises or set backs. I said I was very patient.

I was also talking to RN Claire about when she thought Rose might come home. She thought maybe another 2 weeks in the PICU and then another week up on the regular floor.

Wednesday Rose started getting breast milk through her G tube. Its only 5 cc's an hour but it’s a start.

Also, Rose has had a few good intervals of high activity. Eyes wide open, looking around, rubbing her face with both hands, putting her hand in her mouth, general wiggling all around. Basically enough to screw up her sensors and after a while disturb her vent. We all celebrate and then she gets sedated. Can't have too much of that...

Note for Intensivists:

Rose is getting weaned off another heart med, Dopamine. She might be off completely by today.

And her PEEP is down to 7, started at 10, a normal person is 4.

Cheryl was with Rose today. We did try to call each other several times but kept missing each other. Cher did say (in a voice mail she left me) that Rose was doing well with the Nitric weaning and the Dr's were talking about maybe weaning her off the vent in maybe a day or two. We're pretty happy but have to remember not to get to far ahead of ourselves. Rose has a knack for the unexpected.

Cher and I have worked out kind of a crazy routine but it seems to work. I spend the nights in the PICU. Cher is home in the evening and overnight with Erin and Kate. It probably means I can't get to work much before 9:30 but we all have to sacrifice some.

PS Squirmy worm is one of Rose's many nicknames. Its supposed to reflect an image of much physical activity.

Rose came off the vent early than expected because Steve, the clever respiratory therapist, rigged up an adapter for the Nitric (NO) line. Otherwise, Rose would have had to wait another day or two until she was off the Nitric. It might sound like a little thing but it sure meant a lot to us.

Last night and this morning they were saying that she would probably not come off the vent until tomorrow. They didn't think they had a way to monitor the NO flow on the nasal prongs. I guessed they figured it out. If all goes well the NO she should finish up with it at 6 - actually that's about 20 minutes from now.

So with the vent and the NO gone Rose's meds and drips count has dropped substantially from the original 13. That just leaves 6, I think. 2 antibiotics, a pain med, a cardiac drug, lasex, and a steroid - for swelling - like her throat.

Her weight is done a little below her admission weight but its been pretty steady the last few days. She's around 4.5 kgs. She's also off some IV feeds that they had added because she's - so far - tolerating the breast milk feed through her G-tube - that's pretty handy to have.

Last night Rose was pretty active. She was starting to grab at her lines. She even pulled her vent line off once.

Estimates on Rose's departure date are varying wildly from day to day. One estimate had her going to the pedi floor and then going home a week after that. Oh well, have to just see what really happens. Cher said that Dr Lapuck said that sometimes it takes a week or so to get over the throat soreness and then she has to get weaned off her other meds too. Especially her pain med - its a narcotic - that takes some doing - they say that the PICU is a pretty big user of methadone. Either way, as one resident said, we're optimistic, not cocky. well, cautiously optimistic.

The response from our family, friends and their family and friends has been overwhelming. We start to cry when we think of all the generosity unconditional support we have been receiving but they are tears of love. We have been receiving prayers, cards, food, child + pet care, housekeeping, rides, gifts and flowers. They are all wonderful and very much appreciated. We have also recently come up with because of Rose and what she went through.

Our first idea came after Rose needed blood immediately after surgery. We heard she used at least 7 and probably more units of type A- blood. The Children's Hospital has their own supply with Hartford Hospital and they are having a blood drive July 13th from 7:30am - 12:45pm at CT Children's Medical Center in conference room C+ D. If you would like to make an appointment call 545-8504.

Our second idea is to donate to the CT Down Syndrome Congress (make checks payable to this also) P.O. Box 340385, Hartford CT 06134-0385. Contributions may be made in the name of Rose McAuliffe and will be published in their newsletter.

Out Third idea came because of the wonderful staff we have met at CCMC. Some of them literally helped save Rose's life but many have just been so nice and helpful to Chris and I and our family. The staff in the PICU and ChildLife Services we just can't say enough about. They stood by Rose's bed for hours giving her blood, monitoring her life-machines, administering medications and caring for her body. They dealt with her life and illness along side us and showed us their deep commitment by crying with us, staying with Rose past their time, calling from home to check on Rose, stopping to talk, smile, laugh and hug us. Any donation to this Hospital's foundation.

Rose also finished her 2 antibiotics yesterday. She's still getting 38% O2 though a nasal hook up. She does have 1 cardiac med left. Dr Fisher was talking about starting to wean that off for good. Getting off the O2 and the cardiac med are the final big steps in that long journey of getting to not be critical.

Rose's skin is a lot tougher that it was when she was first born. Any tape on her skin before would have caused her skin to break down. Now she went almost 2 weeks with the vent taped to her face with hardly anything to show for it.

Her incision is healing pretty well. It looks pretty big right now but it should fade with time. One of the RN's was telling me that it will stay the same size as she grows and even then it should start to fade in a few months.

Rose still has an A-line in the top of her right foot. That should go away in a few days - once she's off the heart med. She also still has a double IV in her left thigh. That should go away as she goes up on her feeds. Then they could always give her meds through her G-tube.

Rose's voice is pretty raw. Having the vent in her throat for almost 2 weeks does a job on the vocal cords. Supposedly she should start sounding better in a few days. Right now her normal coos and goo goos sound like a raspy buzz, kind of reminds me of how ET sounded, just quieter.

Yes, she is finally dressed. This being the third time in her short life of frequent hospital visits when she has passed that momentous milestone when she is finally able to put her baby clothes on. Of course, this is the 1st time that we've actually had clothes with us to put on her. I think we are finally catching on.

After returning to the hospital yesterday, the 1st thing Cheryl said to me was, you didn't send that note out yet? Oh, well, I guess it wasn't quite done yet. Hey, if I see something near the PC I just start typing. Anyway, we are going to get the address for the Children's Hospital foundation and we were also going to look into getting a contact for the UCONN NICU where Rose spent the 1st month of her life (Cathy?) I'll send it along when we get if for those that may be interested. We're just trying to taken advantage of this growing e-mail chain letter thing to push our favorite charities.

Besides that, the e-mail is working as a fairly effective means of communication. We have talked to other families in the PICU and they have been pretty bogged down with phone calls. It doesn't take too many calls from just a few close friends or family to eat up a few hours explaining the same thing or answering the same questions over and over. It’s a lot easier to explain things once in the most detail I can remember and just send it out to every one. The phone calls and visits are still welcome but this way everybody starts out better informed. We can jump right to what just happened. Now if they only had a PC in the PICU with AOL on it ... (Erin's suggestion, not mine.)

What just happened:

I just called Cheryl. They did take Rose off the cardiac med, melrinome, I think, at noon time. She was doing fine. If she continues to do fine they'll take the A-line out of the top of her right foot - I'm sure she would appreciate that

Yesterday afternoon was another major first. Rose had a nice big poop. I'll skip the details but let's just say substantial. 1st poop since the night before surgery. Seems like she hasn't forgotten how. She's been getting more breast milk through her G-tube and she seem to be tolerating it fine.

Also, another reason Rose was able to get dressed was because that finally took off the big dressing she had on chest incision. Now she just has a bunch of sterry strips and a much slimmer profile.

Rose also lost her urine catherter last night when they were trying to weigh her. They didn't bother to put it back in and she's been doing fine without it.

Rose still hasn't gotten her voice yet, still doing her ET impersonation. The Respiratory Therapist thought maybe by Monday. Rose is on steroids for general swelling and healing so that should help.

Still on the O2, lasex and fentonal with occasional shots of adavan (everything spelled phonetically with typos)

No vent, no nasal cannul, nothing on her face.

Late evening her O2 sats started to drop a little. RN Mary hooked up an O2 line to a styrofoam cup and placed it in front of Rose's face. It was held in place by Rose's favorite stuffed animal, Yellow Bear. (It's a yellow bear). Her O2 sats went into the high 90's. When I woke up in the morning, I looked in on Rose and she was still in the high 90's. I noticed the cup was gone. Mary said she turned it off at midnight.

Mary’s idea was another clever improvisation that meant a lot to us. It would have been tough if Rose had to take a step back

Really it looks like the last big thing is for Rose to get off the narcotic pain med she's been on for 2 weeks. We are going to have to start asking some much more pointed questions about going home. Like, when?

Claire RN has said that the RN's and Dr's have started calling Rose's room OR room #12 instead of PICU #12 because of the 3 times they were called upon by Dr Ellison to act like a surgical team and had to change Rose's room into an OR.

Cheryl said it was hard to leave the PICU. Our whole family has really formed a special bond with all the Dr's and RN's. Cher told Dr Cuomo that she felt like she was being kicked out but he told her it was more like Rose's graduation day.

Cheryl brought in our stroller today. I hear they made at least 3 laps around the 8th floor. Its a great excuse to take her off the monitors. If you slow down or stand still they hook those @#$%& monitors up and they start beeping.

Maybe I'm just a little punchy because they kept me awake last night. Rose loves to wiggle her big toe and make her O2 sat monitor ring. Its very loud.

Rose's meds are down to just her narcotic pain med. It goes in through the IV in her thigh. Once she's weaned off of that she's ready to go home. We're working on getting a better estimate as to when that might be. One RN this morning estimated Friday as a best possible date. We'll have to see. Of course, as Erin says, "Remember with Rose, expect the impossible"

Rose is doing better every day. She's had a couple of good breast feedings which is encouraging. Between that and her G tube feedings she's just about up to her intake levels she was at before her surgery. Her weight is back up to her admission weight. And she poops, too. I'll leave out the details. Suffice it to say, bring the baby wipes because hospitals don't provide them. Its very strange but all they use are wash clothes. I'm sorry but when I'm cleaning a mess of this proportion off my kids butt I need the best resources available that modern civilization has to offer. Needless to say, this now being our 3rd stay in the hospital, we bring our own baby wipes.

The big thing is still just getting weaned off her narcotic pain med. She is a little irritable from time to time, very much out of character for her, so she may be feeling the withdrawal a little. She is allowed another med, adavan, to help ease her through those times. Cher and I are probably more stubborn than we should be about asking for that. I held her for 4 hours last night keeping her settled. She was fine as long as I held her but as soon as I put her down she would start crying. If she wasn't going through narcotic withdrawal I would think she was starting to manipulate me. We're trying to get better about asking for the adavan to keep her comfortable.

I didn't get much sleep the last 2 nights between all the beeps and checks from the RN's and Dr's. On the PICU, parents slept in a separate room far from the beeps and buzzes. On the regular floor, parents sleep in the same room as the child. Sounds good, in theory, until you try to sleep for more than an hour. Oh well, I'm home tonight and its Cheryl's turn now. Hopefully Rose will be home in a few more days and things will be a lot quieter. Still no firm date yet.

One crazy thing about this experience is trying to get into the hospital in time to have our family dinner in the cafeteria. It closes promptly at 6:30. I usually cut it pretty close. Our Windsor friends have been kind enough to take turns watching Erin and Katie everyday. After work I have to race around - pick them up - go home - feed the dog - right the e-mail - kids in the car - race to Hartford - most of the lights are usually orange - park - run up to Rose's room, top floor- get Cheryl - back to the cafeteria in the basement - most times we're going through the line as their closing up - the hard part is that all this racing around is so we can eat some of the worst tasting food on the planet - as Erin and Katie often remind us. I have almost nothing but positive things to say about Children - almost - the cafeteria food is terrible - oh,well, it does have a really nice sky light.

The other big news is that her coming home day is looking like Saturday. Cheryl says she's about 75% convinced but I'm at 100%. Rose looked great tonight. They pulled the IV out around 5:00 and she really seemed to relax and become her old self. She seems to have most of her old baby tricks back which includes a wide range of gaa's and coo's and tongue clicks and generally batting at anything within arms reach.

She's also pooping like a champ and fortunately the baby wipe supply has been replenished.

Rose is really mobile now. Its a big advantage not being hooked up to anything. She made it down to dinner in the cafeteria with us. After we stopped back in the PICU to visit all of Rose's old friends. It was a good chance for some of Rose's RN's to hold her and get pictures. Its hard to believe how many people were so involved in her care during her 2 weeks on the PICU. Rose had the help of 3 intensivests (ICU Dr's), 5 different cardiologists, at least 4 respitory therapists that I can remember, and a whole lot on RN's (Lori, Carla, Claire, Liz, Wendy, Heidi, Kristin, Mary, Catherine) and of course 1 surgeon.

Rose also does an excellent Maggie Simpson impersonation. She can get that thing going back and forth a good half an inch. This evening she really seemed to take off on it.

Erin also claims she saw Rose smile. It was just a quick one.

This is all the girls in Rose’s room on the regular medical floor.

As you can tell by the length of this note, I'm home tonight and Cher is staying at the Hospital. Apparently I'm still too tired in Cher's opinion to be allowed to stay overnight. I feel like I've been grounded. Actually Cheryl's getting that maternal white knuckle grip on the crib that says there's no way she's leaving this baby.

A careful how you say things story:

I think it was on Tuesday, Rose's first full day out of the PICU that we took Rose back in the evening to visit. While we were gone off the 8th floor my mom and sister showed up to visit. When they found we weren't in the room they asked at the RN's desk where we were. The RN there said something to the effect that Rose had gone back down to the PICU. Before she could say "to visit" apparently their hearts skipped several beats. I guess we were all still a little jumpy on Tuesday, Thursday is looking alot better.

Here's a few of Rose's special NICU friends

It took awhile to pack, we had two strollers worth of stuff to take out. We left the 8th floor at 3:20 pm. We stopped to visit the PICU on the way out. We can't thank those folks enough.

Everything starts to feel normal as soon as you get her in the car seat. The ride home was pretty eventful, except for trying to drive the wrong way down a busy one-way street.

Erin and Kate were thrilled to see Rose at home. And we all enjoyed a peaceful dinner around our own kitchen table. We reminisced about all the sprints to get to dinner in the cafeteria (and the quality of the food).

We're planning on having a very quiet weekend. Rose is on methadone and sleeping quite a bit, its one of the common side affects, so things may actually be quiet for awhile

and probably not as many e-mails.... remember, no news is good news,