Well, good news. On Friday morning, February 26, 1999, at 6:21 am EST, Rose Christina McAuliffe came into the world. Of course, she wasn’t going to come without making it a little more difficult for us. She did decide to turn around after being head down at the last few check ups. When we got to the hospital Friday morning, at about 5:20, the exam by the Doctor showed that Rose was breech. Cheryl ended up getting an emergency C-section. She did hold up fairly well. She managed to get a in a few jokes during the procedure. My favorite was as she was being sown up, "Hey, what’s for breakfast?" I was mainly worried about not puking or passing out and barely managed to avoid both.

Rose was doing fairly well but she still went to the Neo Natal Unit because of her heart condition. Her blood oxygen level was a little low too but they’ve got her on supplemental oxygen to help out. They are hoping to wean her off of that over the next few days, time will tell. Rose does look great. She’s our biggest kid yet at 8 lbs no ounces and 19" long. She’s very chubby looking with a nice round C-section face and head. Her big size is a real advantage for her and should help her heart difficulties. I also think that, if necessary, she could beat the crap out of any of those other little preemies in the Neo Natal Unit.

Cheryl was pretty wiped out most of yesterday but bounced back today. She started breast feeding Rose today and that seems to be going well. Cher is moving around a lot better and is supposed to be ready to go home on Tuesday although I think she may try to stretch it out if Rose is still in, which she probably will.

Erin and Katie got to meet their new sister yesterday and today they both even got to hold her for a little while. They are in the fortunate small group of people that are allowed into the Neo Natal Unit, parents, siblings and grandparents, and only after the 3 minutes of intensive scrubbing, up to the elbows. Although, the kids seems to enjoy scrubbing up like surgeons. It was pretty funny to watch them both walking into the unit for the first time, holding their hands up like a pair of surgeons prepared to go to work.

I really want to thank everybody for the kind thoughts and prayers. It has been a tremendous help to all our family. But visiting is not a good idea for now. Rose can’t leave the unit for now and we spend most of our time in there. So odds are you won’t catch Cheryl in her room very often. Also, its a good idea to minimize the number of people Rose gets exposed to until she gets through her heart surgery.

We talked to the pediatric cardiologist Friday afternoon and no surprises there. He confirmed that Rose does have the endocardial cushion defect. We are supposed to bring Rose in for an exam about a week after she gets out of the Hospital. The surgery will be probably a month or two after her birthday. They would like to let her get some more size and weight and have her heart develop as much as possible before the surgery.

But for now, all is well. Rose is a lot of fun to hold and play with. Both Erin and Kate are a little stumped by this Down Syndrome thing because she does look more like and act more like a regular baby than anything else.

Thanks again for all the kind thoughts and prayers. If you would like to talk to Cher you could try calling her at her room at the Uconn Medical Center in Farmington. (I don't have the number, I usually just drive there.) Or you could email and I’ll bring the note to her.

Paternally yours,

Chris

You can tell these pictures were taken on Rose’s first day because Cheryl is still in a wheelchair.

Rose was in an oxygen tent at this time but we were able to take her out to hold her as long as she had the nasal candula on.

Erin and Katie always had a strong compulsion to touch Rose.

By the way, I'm not planning on going into work much in the next few days... maybe just sneak in for an hour tomorrow morning but then not at all on Tuesday. There's just too much going on to have anytime to do any work. I want to take the kids to the bus stop and pick them up the next few days just so they can start to get back into their normal routine. They really haven't been home doing normal stuff since last Thursday.

Anyway, I think we are OK for a day or two but I will try to talk to you guys tomorrow to let you know what we are doing.

Thanks for all your help.

Chris

Meanwhile, Cheryl is being discharged tomorrow but she is going to hang out at the hospital for a few more days so she can keep up on the breast feedings. We were exploring different options for having her stay on for a few more days while Rose is there. I think I really made the nurses' day on the OBGYN floor. I asked how much a day it would be if Cheryl decided to stay a few days past the 4 days allowed. Apparently not a good idea, it's between $700 and a $1000 per day. Actually, they offered to let Cheryl use an open room for nothing so we're probably going to go with that instead.

The day ended much better with a few of the nurses from the breast feeding team working closely with Cheryl on some ways to maximize the amount of milk that Rose gets through the breast feeding. This seemed to be working really well - - the afternoon and early evening feeding went really well.

Erin and Katie came in for the evening to visit and it was a really special moment. I couldn't believe how awake Rose was. For over an hour she was wide awake, with eyes wide open, following the sounds of their voice. She really perked up for them like I have never seen before. Cheryl says she has seen her pretty alert during the nights but I've missed that.

Erin and Rose are sitting next to Rose’s bassinette. She’s out of the oxygen tent / table set up by now. Rose still has a lot of wires and lines so you can’t go to far; the oxygen, an IV and heart and breathing sensors.

Rose is still getting some oxygen assist so she's not yet on room air. She has to do that for at least 24 hours before she's allowed to go home. So I would have to say that, optimistically, the earliest Rose will be home is Thursday but it could be later. It's a day to day thing.

Cheryl was discharged from the Hospital today but the only thing that looks different is that I took the flowers home. (Oh yeah, and she's not wearing pajamas anymore) They are letting her stay in her old room for a few days so she can nurse Rose at night. But I think she will want to come home for a little bit, at least, to see the kids some more.

Please keep in mind that Rose is doing fairly well. It might sound a little scary because she's in the NICU but she's definitely the largest and probably one of the healthiest babies in there.

Today was another day on the Rose roller coaster. She had a good feeding early in the morning and then was awake and alert for about an hour, which was a lot of fun for Cheryl. But then I think everybody starts getting there hopes up that every feeding will be like that. The next few feedings were sleepers. She is getting some supplemental feeding besides the breast feeding so she is definitely getting enough fluids now and her diapers show that. Then tonight we brought Erin and Katie in and they managed to get Rose's attention for over an hour including another good feeding. Cheryl thinks that Rose is settling into a pattern of 2 periods of wakefulness a day, one in the morning and one at night. Regular babies have periods of wakefulness at every feeding (at least I think so, It's been awhile). It does seem plausible that with Rose's heart condition and the DS she will find her own unique pattern.

She is definitely a joy to watch when she is awake. Her eyes are unique. When they are open they seem very large and are almost completely filled by her dark blue corneas.

We do have a set of pictures of Rose with us and the kids and her grandparents that we will try to remember to pass around.

Good news, she's been out of the incubator for a few days. It provided heating which she can now do on her own. She's in a regular hospital basinette so it’s a lot easy to get at her. She hasn't had an IV for a few days. She does still get some oxygen assist through one of a nose line but she could come home with that. When she's awake she's almost constantly pulling it out. (I think she thinks it funny, I think she has my sense of humor)

We have had a lot of wonderful offers for help which Cheryl and I appreciate greatly but this is kind of one of those cases where its difficult to figure out what other people can do. We are still trying to take it a day at a time ourselves (actually, we can only do half days right now, next week we are hoping to work up to full days). Taking the kids for awhile is a possibility but their Mom wants to see them every day and they want to see Rose and their Mom. Also, we have to be careful that they don't get exposed to anybody that's sick, or anybody that's been near somebody that's been sick. As a minimum, they wouldn't be able to visit Rose for a while (actually the minimum might be that they have to wear a face mask when they do visit).

I didn't mean to ramble so much but thanks for all the kind offers of help.

I brought Erin and Kate out to visit again last night. They still have the magic touch. Rose woke up for about 45 minutes, fed well, and was held by the two of them. She really seems to respond to their voices and faces. It's great to see that connection.

Well, Monday is going to be a big day for us. Cher and I are supposed to talk to the NICU Dr. about what Rose's plan will be. We are hoping that it will be to discuss here discharge plan. And she seems to definitely be making progress but you never know for sure. She is still on some oxygen, she has one of those nose things (nasal candula?) and she still gets roughly every other feeding as an NG tube feeding. But she could come home with those. The important thing is that she shows a pattern of weight gain through the weekend and she has started to do that the last couple of days.

It is possible that Rose won't come home right away. They may decide to prolong her stay in the NICU to build her up some more or call the cardiologists about moving up her heart surgery. But yesterday, talking to the Nurse practicianor, these looked less likely.

Today was an interesting day. Once again Rose proved that she can defie any attempt to make a pattern out of her behavior. She started the day with a good feeding around 6:00 am and then proceeded to stay awake until past 10:30. She then pretty much slept until 9:30 tonight. (OK, she actually slept through the whole game, but it wasn't that close). She does make a pretty fair assortment of noises and facial expressions while she's sleeping. You forget about all those cute bady snorts and squeaks. But its more fun when she's awake. She started waking up as I was getting ready to leave the Hospital. She actually woke up and cried a few times for attention. She was pretty alert when I left.

Rose's weight gain has been good. Yesterday she was back up to her birth weight and today she gained another ounce and a half. This is her most important measure of progress so I guess I am getting optimistic that Monday we'll be talking to the Dr's about a discharge plan. We'll have to wait and see, though.

We also spent a lot of time today with Rose in a family room near the NICU. There's an oxygen supply in there so we can camp out. We were in there for a total of 4 or 5 hours today. It’s nice to get away from all the beepers and alarms from all the sensors on all the kids in the NIC unit. And its a really confidence builder to just sit with her when she's off all the monitors and just look at her and decide that she's OK based upon the normal things parents look for in their babies. We are definitely starting the process of weaning ourselves off the NIC unit.

Cheryl is still staying in her old hospital room. She did manage to sneak out on both Thursday and Friday and come home for a few hours. We are going to try and time the feedings so she can come home for a few hours tomorrow afternoon. She's also going to try sleeping at home tomorrow. Hopefully, soon, Rose will be too.

They are also still fine tuning her feeding a little bit. Generally her weight gain has been good.

We are starting to get let our selves get a little optimistic (cautiously) that Rose will be home by this coming weekend. Tomorrow we start talking with the discharge coordinator (that's a good sign). The cardiologists are supposed to take another look at her tomorrow.

Cheryl's home more now. We are trying to work out a routine that looks something like our old family routine, the big kids were starting to feel it a little. Cheryl goes into the hospital for an early feeding and then stays all day and then will try to get home for dinner. I get the kids on the bus and then go to work. We meet at home for dinner and then I go back to spend the evening with Rose.

I'm late now... got to go.

She's been pretty consistent the last few days with her feedings. Although she has been spitting up a little bit. She's on something to try to limit this. They also put her on a diuretic to reduce her blood volume so her heart doesn't have to work as hard. The Dr. said this is pretty typical in cases like hers but this could cause her to lose some weight in the next few days. Even with these weight looses, the Dr's still seem confident that she will be coming home. I guess there glad that in general her feeding is going well.

Rose does have a test tomorrow to look at her digestive process. They give her some barium and follow it through her system with x-rays. They just keep coming up with these tests. (I think they're on a commission). Part of the problem is she tends to take too long to empty her stomach. They're hoping this might give some answers.

Anyway, Rose is doing well on her second day off of any oxygen assist. She will come home with a tube feed set up. We have to meet with the equipment rental people tomorrow and get some training.

Please remember that even though Rose is doing better and coming home soon we are still going to be very conservative about keeping her free of infection. We appreciate everybody's restraint. She is really cute (looks like Katie when she was born) and a lot of fun to play with. We are thinking of shooting a video and making it available for the people with uncontrollable visiting compulsions (you know who you are)

Her heart repair is off a month or two. Rose is supposed to go to the pedi cardiologist a week after she gets out of the NICU and we'll know more about that then

This will take a while for Rose to recover from. The shock of the anesthesia and the operation causes the digestive system to shut down and it takes at least a few days to start up again. They check the progress of the stomach's recovery through a tube in her stomach. This is a G tube. It goes through her abdomen directly into her stomach. Cheryl seems to think this is better than her old NG tube (goes through the nose into the stomach). I'm still a little squeamish about it. She could be on an IV for a week and then she would be transitioned off the IV onto feedings over the course of another week so she could still be in for another 2 or 3 weeks. On the bright side though, both surgeon and the NIC unit DR thought that there was a chance that this might improve her ability to feed so she could be entirely off of tube feeds.

This picture is from the day after surgery. (The breathing vent is gone). It’s a Polaroid taken by the NICU. We used this picture to try to explain to Erin and Katie how Rose looks, what they need to be careful about. The blue tabs are to monitor her heart. The yellow tab on her side is to monitor her breathing rate. The clear plastic line going into her stomach is her G-tube. The large bandage just below her G-tube is from her surgery. The patches on her cheeks are tegaderm. These were used to protect the skin on her cheeks from the tape for her vent or her nasal candula. Her skin tore very easily from tape. These tegaderm patches look thick but they worked and they came off later with no problem.

Other Rose Highlights:

- Rose had her hearing checked the other day and passed

- Rose got baptized this morning. Our parish priest stopped by and performed the ceremony. Cheryl and another nurse were the witnesses. We will still have a church ceremony later on, when she's home.

Random bragging about our other kids:

Katie (1st grade) has been doing really well on her spelling tests, She's aced the last two weeks. This includes regular words, bonus words and the dreaded challenge word. The challenge word 2 weeks ago was camouflage and this weeks was silhouette. I think all our draws dropped (including Erin's) when Katie spelled both words for us at dinner a few nights ago. (I needed to use Word spell check for this note).

PS. Chris, I hope Pepper behaved himself. Thanks.

Picture  "Rose3"

These are the same pictures from Rose’s first day.

These pictures are pretty old. They were taken the day Rose was born. We are working on another roll in the camera and hope to finish that off soon. Tomorrow is another photo op. We are going to bring Erin and Kate in to visit and Rose is looking much more photogenic (if that's possible) without here NG tube or oxygen line or that nasty vent line that had to be put in for yesterday's operation but was taken out today.

Katie holding Rose. (Rose with a clean face, no patches, no nasal canula)

Rose's digestive system seems to be waking up. They told us they were going to keep her on just the IV for a week but they have started her on some pedolite today and she seems to be tolerating it. If she continues to, they are going to start her on some watered down breast milk tonight (through the G tube). We'll have to see how she copes with it before we start getting our hopes up for an early homecoming.

Rose still takes most of her feedings through the G-tube, though. There are times that she is too sleepy to breast feed or Cheryl’s not there. Although, Cher thinks that when Rose gets home she’ll won’t be wasting energy on being poked and prodded and she’ll have more energy for more feedings.

Right now, the G-tube is an actually tube that’s about a foot long. It is a bit cumbersome but its flexible and can be tucked into her clothes. Rose will get a "button" to replace the G-tube before she comes home. This can be replaced when she finishes healing around the G-tube on her stomach. The button is flush to her skin so it will be a lot less cumbersome. She will have a tube slid through the button when she needs to feed and the rest of the time it will be plugged. It will also be helpful when she’s recovering from her heart surgery.

Oh, yeah, Cheryl and the folks in the NIC unit were using the "D" word a lot today (discharge). More getting hopes up.

Random story about the other kids:

This was last week, one night when we brought Erin and Kate in to see Rose. As usual we all scrubbed for 3 minutes like surgeons before entering the unit. They’re both pretty adept at this now. When we were inside, I was standing next to Erin at the foot of Rose’s bassinet and I noticed that Erin’s sneaker was grossly untied. An infraction that no parent could allow to pass unnoticed. I instructed Erin to tie her shoes and then to wash up again. Erin said that she wouldn’t need to wash up. As I was doing my sternest dad impersonation she took two paper towels from the sink in the NIC unit. With a towel in each hand she picked up her shoelaces and tied her shoes. I still don’t know how she did it. It was as fast as she normally ties her shoes. The only thing I know for sure is that her hands never left the paper towels and her shoes were tied when she was done.

It looks like Monday, we will start more detailed talks with the discharge coordinator. We'll have to see how fast things go from there.

Only one side story this time... a few nights ago, they thought Rose was running a fever of about 101. We were a little bit concerned. We thought this would be the unexpected turn for the worse that would keep her from coming home. The thing was Rose seemed fine despite the fever. She does sleep more than a normal baby but when she's awake she's pretty alert and does move around a lot. Well, she had the fever for about 24 hours until they tried another thermometer and then she was all better. They threw out the old thermometer.

It looks like Rose won't be getting her G-button right away. She needs to wait a month after her surgery to heal before they can put it in. It's only been a week and a few days so she'll probably be coming home with the G-tube and then go back in and have the button installed in an office visit.

We are still hoping to be talking to the discharge coordinator tomorrow about having Rose come home some time later this week...

Erin was looking at Rose's basinet in the family room toady and commented that maybe we could hook Pepper up to it so he could pull her around the house. I told her I didn't think that was too good an idea. I'm going to have to keep an eye on her.

Well, things are looking good for tomorrow.... I don't want to get my hopes up too much but if things go well, the next e-mail will be on the rules for visiting 18 Kellogg St and not another hospital update.

This isn’t from the car seat test. I think she’s in the back seat of the car on the way home.

We have some settling in to do but I'm sure some folks are going to want to stop by. We are going to be cautious but we are still social people and need to share Rose with our family and friends (OK, well Cheryl is anyway. She would rent out the Civic Center if she could)

Just some basic but strict rules. Make sure you are in good health and you haven't been in contact with any body recently that's sick. And call first to make sure we are around and not too tired. We get cranky when we're tired (OK, I get cranky).

As far as the email goes, I will probably not be sending them out everyday any more. (Unless there is a particularly unique diaper deposit that requires in depth descriptions) Rose does have a number of Dr's appointments coming up next week, though, and I will keep you posted on the outcome of those visits. Monday is the pediatrician, Tuesday is the cardiologist and Wednesday is the checkup with the surgeon for the G-tube.