Cleaning the Oven, 1830's style... and more!

On the way out the door Bennett requested his hat.

Membership at OSV definitely has its perks!  To begin with, the cost of membership pays for itself in two visits.  We've now gone for 16 consecutive weeks.  Sure, that might be a bit excessive, but our price per person is now approximately $2.64.  (14 weeks where we only had to pay for 2 people, and 2 weeks for 3 people.  This is because Bennett was free before age 3.)

But if it hadn't been for the membership we wouldn't have gone so much and then I likely wouldn't have had the opportunity that I had this past weekend.  But first, a little more about the day in general.

It was Apple Days this weekend so there were lots of apple-centric activities.  In fact, more than we were able to experience.  It also was Friends Day, with a few events just for members.  The sawmill was also rededicated after having some repairs done over the summer.

In the Spring we had received a mailing requesting a donation for the sawmill.  Seeing how we love OSV and Chris loves saws it was kind of a no-brainer that we would support this campaign.  As a "thank you" donors were invited to hear Norm Abram (This Old House, New Yankee Workshop) speak.  Norm is one of the trustees of OSV and we had seen him on a visit around this time last year.  The talk was interesting as they discussed some of the repairs to the sawmill and other buildings, but it really was a chance to drum up support for a new fundraising campaign that they were kicking off.

While we were listing to Norm speak Bennett was off gallivanting with Uncle Andrew and Aunt Gentry.  They made mulling spice sachets, sampled heirloom apples, played on the playground, visited the Cider Mill, and stopped to get a morning snack of cookies.  Wow, that was a busy hour! 

When Chris and I got out of the talk I texted Andrew to see where they were.  He said they were at the playground and would then be going to the Cider Mill.  So we slowly made our way to the Cider Mill, stopping to ask Rhys (one of the interpreters) who we should contact to try to get some information about a Christmas present that we want to make for Bennett.  When we got to the Cider Mill we didn't see Bennett, but we did see Dave (another interpreter) who was working with Blue, the ox.  We chatted with him and then asked if he had seen our son.  Yup, we are now at the point of being able to ask them these sorts of questions.  He hadn't seen Bennett, so we headed back towards the rest of the village.  And that's when we saw them at the "cookie store" having their snack.  Turns out when they had been at the Cider Mill Dave was addressing a much larger crowd so probably didn't notice Bennett.  Or maybe he only recognizes him when he's with us?

We then made our way down to the Freeman Farm.  We checked out all of the animals and then made our way into the Farmhouse.

Checking on Summer (the calf) inside one of the barns.

The kitchen was pretty busy, but as soon as we walked in the door Victoria (see, I told you we are learning all of their names) recognized us and said hi.  She was about to sweep our the bake oven and asked for a volunteer.  I said I would and she replied, "I had a feeling you would want to."  I think that this is an opportunity that likely wouldn't have arisen if we hadn't been to visit so much.  Since we've watched this process numerous times before, I didn't need much instruction as to what to do.  When I was done she said I had done a good job.  I said that she had to say that.  She clarified that she only had to do one quick sweep to finish, so it was in fact a good job.

So how do you know if your bake oven is at the correct temperature?  After sweeping out all of the coals you need to let it cool down a bit to the correct temperature.  Each individual has their own count to let them know what the right temperature is.  I think Victoria said that her count was 15.  Basically, you put your arm in the oven and start counting.  The count is the number that you get to before you have to remove your arm because you can't stand the heat anymore.  So I gave it a try.  At this point, my count was somewhere between 4.5 and 5.  Victoria then tried it and her count was a 7.  Hmm, I guess she can stand the heat a bit more than I can.  

During the talk earlier in the morning we had learned that there had been a fire at the farm.  Turns out it was back in 2007 and it had burned all the wood around the fireplace and most of the ceiling.  However, it had allowed them to discover that there had been a drying rack and initials on some of the wood from when it had been at the sawmill.  The fire had been caused by a hairline crack in the bake oven, so always have your fireplaces checked before using them!

In non-OSV news, on Friday we had Bennett's annual Cardiology visit at Children's.  On the way there we told him that we were going to "Children's".  He asked, "the Children's Museum?"  Nope, sorry bud.  But understandable how he would get them confused.

Checking out the ball maze/thing in the lobby.

First up, after height and weight checks (14.1 kg and 100 cm), was an EKG.  He wasn't really a fan, especially about being asked to lie down.  I'm sure it also didn't help that we had the CNA that we REALLY don't like!

Next up, after about a 30-45 minute wait back in the waiting room was an ECHO.  We hadn't realized that he would be having one.  Again, he didn't like being asked to lie down, especially since the lights in the room had been dimmed.  We were completely shocked.  Bennett stayed so still.  Of course to get him to do this I had to pull up the most horrible of shows for him to watch on my phone.  He knows it as Grandpa's Toys, but it's really Wee Sing's Grandpa's Magical Toys.  They have the VHS at school and the kids all love it.  As an adult though, it's absolutely horrible!

Sorry for the super dark picture, but the room was dark.

Then after the ECHO it was back to the waiting room for another half hour or so before being brought back into a room, waiting for the Fellow to see us, and then more waiting for the doctor.  We had brought a whole slew of toys and books, but Bennett was getting pretty tired of waiting!

The Fellow came in and she interacted well with Bennett.  We asked her our questions and she gave us her answers but said she would check with Dr. T as well.  Then finally Dr. T came in, for what was about a 5 minute visit.  And that's being generous. Bennett was a bit aprehensive about Dr. T but overall did ok.

So now for the update...
No change from last year.  He still has "moderate" tricuspid regurgitation.  No immediate concerns for surgery- maybe he'll need it in a decade or two, but there's really no way to predict.

And as for our questions?

• He does not need antibiotics before dental visits.  (Apparently this is common procedure for many heart patients.)

• No worries about amusement park rides, at least not for now.  At this point, the rides that he would be allowed to go on wouldn't cause a problem, but in general, those warning are more for patients with a different type of defect.  I guess we can ask again in a few years when he's more interested in serious roller coasters.
• He's been cleared to play varsity sports!  Yes, we really did get a letter that says this.  We needed a note for the public school (where he gets speech therapy) stating if there was anything that they need to be aware of.  So if you read between the lines, this means he's just fine and they don't need to be concerned.

After lunch at the hospital we headed home.  Bennett took a nap in the car, and then slept a bit longer at home and then shortly after he woke up it was time to take him to the pediatrician for his 3-year check-up.  Again, he's doing great.  Their stats measured him at 32.2 lbs and 39.25".  They also tried giving him a vision test.  He did moderately ok with it, but wasn't fully cooperative.  He got a flu shot (in fact, we all got them) and then we were told to come back in a year.  Although it's a good thing that we don't need to come back for a year, this actually makes us a little sad because we love our pediatrician so much.  And we saw him so much the first couple of years (monthly for the first two winters, not to mention other visits) that it feels strange to go so infrequently.  In fact, we haven't had to go for any extra visits in the past year other than a check-up 6 months ago.

On Sunday Bennett went with Nana to visit Auntie Hanna at college.  Apparently feeding the ducks is a highlight of Wheaton.

Meanwhile Chris and I rearranged his room.  Bennett is ok with change as long as you don't try to move things around while he's there.  Otherwise he just tries to put things back where they were.  We decided it was time to make the transition to a big boy bed and this meant moving the crib/toddler bed out of the room and rearranging the rest of the furniture.  When he got back he kept asking where his little bed was.  Luckily the appeal of Curious George sheets is good and he seems to be doing ok in the new bed.

When I put him to bed that first night he didn't want to lie down, but that's not completely abnormal.  I left the room and I think he fell asleep pretty easily.  He woke up at 5:45 the next morning fussing and when I went in to him he asked for me to lie down with him.  I did, but it was extremely uncomfortable for me, so I hope we don't make that a regular occurrence.


And finally, here are some other pictures from the week.

I was wearing a headband and he decided that he should wear it instead.

A drawing of a "haunted house"

A drawing of carrot/ cucumber from the garden.

A medical update

I realize I haven't updated on Bennett's medical condition lately.  (Ok, I haven't really updated on anything lately.)  So here goes.



At the cardiologist- August 2011

August 2011 he saw the cardiologist.  It had been a few months since he had last been in.  The cardiologist he had been seeing had left to go to another hospital.  We considered staying with him, but in the end figured we'd rather stay with Children's. 

The ECHO was challenging.  Bennett did not like lying still.  They got some images, but not great ones.

We met (very briefly) with the new cardiologist and were told that everything looked good.  Come back in a year.

Fast forward to 2012.  When we left last year, they had mentioned the possibility of doing a sedated ECHO next time, but that they would let us know.  After a horrible experience with a kidney/bladder ultrasound back in February, Chris and I knew sedated was the way to go.  So I called and made it known that we thought it would be best if Bennett were sedated.  Finally we heard back that yes, they thought so to.  And then the appointment ended up being rescheduled a couple of times.

Finally at the end of September we were able to get in.  Being sedated meant nothing to eat after 2:30am the night before, and only clear liquids until 8:30am.  (Appointment scheduled for 9:30.)  Surprisingly he did well with nothing to eat, and didn't fuss about no milk.  He was more annoyed with the 2 hour drive to Children's in the morning.  Under "normal" circumstances it would take maybe 45-60 minutes, but it was rush hour.  Chris found some Thomas videos on his phone for Bennett to watch, and that kept him happy for a little while.

Then began the waiting.  At this point we're used to appointments at Children's taking excessive amounts of time with lots of time waiting.  In this case, we were told 9:30, they had us down for 10:00.  They got a height and weight and then brought us back.  Interestingly, our little pipsqueak, was pretty much right on the upper range of being able to take the sedation medicine. 



Passing time while waiting to be sedated. 

They had a play doctor kit in the exam room that Bennett liked playing with while we waited.  Finally they were ready!  The nurse came back in and gave him the medicine.  And then we had to wait for him to fall asleep.  Bennett does not like being told to go to sleep, especially a couple of hours before his normal nap time!  Daddy and I took turns holding him and trying to keep him still.  We couldn't put him down because he would likely fall and hurt himself.  Plus I think he would have been really confused about what was happening.  In the end Chris lay down on the exam table and held him.  All in all, this took maybe 15 minutes.

Then it was time to transfer him to the room where they do the ECHOs.  He woke up slightly when he was transferred but he went right back to sleep.  The nurse stayed with him and Chris and I went to get some food.



He also did some coloring with his new Aquadoodle
that he got for his birthday.



Some people have commented that they wouldn't be able to/ wouldn't want to leave their child there, but with our experience at Children's, we've learned that when you get an opportunity to eat, take it.  Doesn't matter that it's only 11:00.  Go. Eat. 

When we got back to the room the person doing the ECHO was just wrapping up.  They had been able to get great pictures and a very thorough look at his heart.  Bennett was still sleeping, so they went ahead and did an EKG.  Then the cardiologist came in to talk to us.

It was awesome being able to talk and be able to give our full attention to the doctor rather than only have listening while we're trying to entertain Bennett and keep him from getting into everything.  And the news is... He's doing awesome!  The cardiologist commented that Bennett now has "mild regurgitation".  Wow!  Such a change from what we were hearing just before he was born.  They may not do an ECHO again next year, but that's ok because they were able to get such a thorough look this time.  And everything is looking great.  No reasons why he should be prevented from doing sports or other activities.  Future surgeries?  Maybe, but likely not until he's a teen/young adult, and possibly won't ever need anything else.

When we were done talking, and Bennett had been asleep a decent amount of nap time, the nurse removed the EKG stickers.  This woke Bennett up.  The nurse commented that coming out of sedation was similar to being drunk.  And that like with alcohol there are happy drunks and angry drunks, there was a similar range of outcomes when coming out of sedation.

Bennett is a happy drunk!  But  he also thought he could act like his normal self.  Um, sorry buddy.  We had to hold him to keep him from falling down or crashing in to things.  After he drank some milk we were free to go.

He also had his 2 year appointment with the pediatrician that afternoon.  We had time to kill between appointments so we stopped by Brandeis to visit Chris' co-workers.  The effects of the sedation hadn't worn off yet.  It was a struggle to restrain him!  This is a boy who doesn't like sitting still for very long!  But it was entertaining watching him try to walk.  But also a little scary since we had to keep such a close eye on him.



Asleep in the waiting room.



Then it was off to the pediatrician.  Bennett fell asleep again in the car.  He must have still been feeling the effects of the sedation because he didn't wake up when we took him out of the car.  Plus he slept in my arms while hanging in the (noisy) waiting room.  It was awesome!  I haven't been able to hold a sleeping Bennett in almost a year.  I hadn't realized how much I missed that.



Asleep in the exam room.



Then when we took him into the exam room he was still sleeping.  The nurses kept asking if he was ok- was there anything wrong with him?  Nope, just the after-effects of the sedation medication.  Understandable though, because I can imagine if I saw him lying on the table like this I would probably freak out a little as well.

When the doctor came in, we woke him up since we had to get an updated height.  They didn't like the measurement that we had gotten at Children's because it was very different from the last measurement that they had.

And then it was a pretty basic appointment, except we had to keep a closer eye on Bennett to keep him from falling from chairs and crashing into things.  But he was good about sitting still when he needed to be examined.  Pediatrician didn't express any concerns to us.  Yeah, Bennett has a speech delay, but he is making progress.  (We'll be so happy when he learns to communicate more!)

Catching up

It has come to my attention that there needs to be an update.  When I wrote the last post we were hopeful that we would be going home on Tuesday.  I didn't want to come right out and say that we were in case things changed, but we knew that was the goal.

Tuesday morning I made sure to convey that goal to the nurse.  It's a good thing that I did, because she thought we would be leaving on Wednesday.  But everything started to get going, and we got to go home!

Needless to say, Tuesday was a busy day at the hospital.  So many people came in and out of the room before we could be discharged- nutritionist to give us the recipe for the high calorie breast milk, someone to let us know about visiting nurses and early intervention, we had to finally pick a pediatrician (one of the nurse practicioners actually came in and referred us to the practice that we were thinking about using, so it was nice to be able to hear her opinion and get some user info on how the practice works), get the car bed installed, learn how to draw Bennett's medications, doctor for a final physical, we gave him a bath with a clinical assistant to explain to us what to do, two visits from lactation (I think I'm going to miss Kim stopping by to help- she was great!),  phlebotomy to do a blood draw to check his creatinine levels again (much better than Monday's levels)... I'm sure there were more people, but this is all I remember.  And that's not counting the regular activity from nurses, CAs, and the nurse practitioner.

We also got another roommate on Tuesday morning.  Their baby was just a little younger than Bennett and they had just gotten transferred from the Cardiac ICU.  They seemed like nice people.  Shortly after they got in I told them that we were going to be discharged and that they should ask to be moved to the other space in the room as the window side is much nicer than the one by the door- it's slightly larger and also more private.  Having been in both locations, we liked the window side much more!  We were talking with them later and they mentioned that they had already asked twice if they could be moved.  :)

So we finally were ready to go; Bennett was unhooked from the monitors, the leads were removed from him, and all we were  waiting on was some paperwork.  And in comes the CA wanting to check his vitals.  Are you kidding me?  Luckily that went pretty quickly.  We piled all of our stuff onto a cart (wow we had a lot of stuff!) and headed off to the elevator.  Chris got on the elevator, I'm holding Bennett, and all of a sudden I remembered we'd forgotten to get all of my expressed breast milk from the freezer.  It was too late for Chris to get off, so he went down to the lobby and I went with a CA to the room where they keep the milk.  There was quite a bit.

We went downstairs, met Chris, and he went off to get the car while I waited with our stuff.  Proof that we had too much stuff?  The back of my car was full and we had some stuff in the passenger seat.  I was riding in the back seat to keep an eye on Bennett.  Of course by this time it's rush hour.  We didn't care.  We were on our way home!!!

However, before we got home we had to make a stop at the pharmacy to pick up Bennett's medications.  Of course it's not the most convenient pharmacy as one of his meds had to be compounded, so we had to go to Hopkinton.  We finally got home, but then Chris had to run out to get diapers and formula.  We would have gotten them at the pharmacy, but they didn't have the right size diapers nor the right kind of formula.  It was very weird being at home alone with Bennett.  I definitely had a feeling of, "now what?"  I'd definitely gotten used to how things were at the hospital.  Not to mention we weren't quite ready at home so I didn't really have a place ready to put him.

Other than feeling really odd, our first night at home went well.  Except for the screaming fit that Bennett had from about midnight to 2am.  He had to be held.  As soon as we got him to sleep and put him back in the bassinet, he'd wake of screaming again.  Was it because it was too dark?  Too quiet?  He certainly hadn't been this way at the hospital.

I Wanna Go Home

There's a song by James (my favorite band, who's concert we had to miss because I was in the hospital and Bennett was only 3 days old) that has the chorus

I wanna go home, right now
I wanna go home right now
I wanna go home, right now
I wanna go home.

That's how we've been feeling the past few days.  I think Chris and I have both been singing it.  The end is in sight, but still a bit unknown.  I think we've been a little frustrated all weekend, and also today.  On Friday there had been mention about maybe going home in the middle of the week.  Chris thought he remembered someone mentioning Tuesday as a possibility.  Well here it is Monday night, and we still didn't seem to have much definitive progress.

Earlier in the day the nurse practitioner said the decision of when we can go home is up to Bennett's cardiologist.  She tried getting in touch with him, but he was "un-pageable".  Finally she emailed back and forth with him and we were able to meet with him a little after 8:00 tonight.

Meanwhile he had another ECHO showing things as being normal for Bennett.  He had blood drawn which showed elevated creatinine levels.  Basically his levels are similar to those of a 10-year-old.  So tomorrow there will be additional tests to try to figure out that issue.  Bennett also had an x-ray.  Ugh, I felt so bad for the little guy- strapped to a table in just his diaper and I had to hold his arms steady above his head.  There was a lot of loud screaming.

As a write this, Bennett is taking his car seat challenge.  This is a requirement of the hospital before he can go home.  He has to be strapped in his car seat for 90 minutes while being on the monitor.  If there are any major drops or peaks to his stats during those 90 minutes, he fails.  What's annoying though is that Bennett's car seat is only rated for babies over 5 pounds.  Since Bennett is still below this weight, we had to buy a car bed.  This allows him to lie flat in the car.  However, it's strapped directly into the car and isn't easily removed.  This means we can't easily remove the car seat to put him in a stroller, etc.  But it was either this or pay twice as much for a standard car seat that is rated for 4 pound babies.

Also before discharge we'll have to meet with someone from nutrition to learn the secret formula to his high calorie breast milk (they add formula powder and other ingredients to turn 20 calorie breast milk into 30 calorie).  We also will need to get his prescriptions filled so that we can have practice drawing them up.  (Currently they have been coming pre-filled from the pharmacy.)  Plus arrangements need to be made for visiting nurses, we need to find him a pediatrician, and I'm sure a million other things.

But back to our meeting with the cardiologist tonight.  I asked when we could go home.  He said this week.  He talked about the various tests tomorrow re the creatinine issue.  Wednesday was mentioned.  And then I asked about if tomorrow would even be an option.    It's a possibility, assuming all the tests and everything else can be arranged!  If it does happen, it will likely be later in the day, but that's ok by us!

If tomorrow does become an option, it's going to be a busy day!  I sometimes feel as if there are a million people coming and and out of the room- nurses, clinical assistants, plebotomists, people from lactation, social workers, doctors, case managers, neurologists, etc.  I think that tomorrow it's going to be even more hectic!

And as an aside, this makes 3 posts in a row where the titles have been songs.

We have progress!

So much has happened today! Bennett...

• had his PICC line removed.
• had his pacing wires removed 
• took a bottle at multiple feedings today (yesterday he guzzled one down but then didn't want one at a second feeding)
• nursed from the breast for 20 minutes!!!!!
• and yesterday he had his nasal cannula removed.

On the not so fun side, we just learned that since his car seat is only recommended for over 5 pounds, we'll need to find something else for him until he reaches that weight.  :(  So rather than spending lots of money on a new carrier style car seat that is rated for over 4 pounds we'll probably be buying (through the hospital) a car seat bed that he can use until he reaches 5 pounds.  Hopefully we won't get much rain or other icky weather until he can fit in his regular car seat as I imagine it will be more of a pain to get him in and out of the car.

But maybe some of the best news?  Looks like we're aiming for the middle of the week to be able to take Bennett home!  Since he will still be on some meds we'll start to get training on how to administer those.  I guess now we just need to really crack down and find him a pediatrician.

Next Steps

At this point Bennett is doing really well.  Everyone is really surprised at his great progress.  So what's next?  

To move from the Cardiac ICU to "the floor" he needs to be able to maintain his temperature outside of the isolette.  I guess he's doing this well, because they started opening the isolette up last night, and tonight he was moved to a regular crib!  He also needs to be either 2 kilos or 2.2 kilos.  The doctor we spoke with yesterday couldn't remember which it was.  Currently he's right around 2 kilos, but if he has to be 2.2, that means he needs to gain about half a pound.

At some point he needs to learn to take food orally.  I'm not sure if that is a skill he needs to learn before he is moved or if he can learn that when he's on the floor.  We attempted breastfeeding today, but he was pretty sleepy.  But he got to taste some milk in his mouth.  We just need to get him to learn to latch.

As an aside, in everything I've read, I've seen how pacifiers are bad for babies if you want them to breastfeed.  Apparently that's not the case with preemies- especially in Bennett's case where for about two weeks now he hasn't taken any food orally.  The pacifiers are good because they help them learn to suck.  So I guess I have to bite my words (and the urge to throw one out today) and let him have it.

In regards to Bennett's feeding, he was being fed continuous breastmilk through a feeding tube.  Today they changed it from continuous to bolus feeding.  This means they are now timing it to get him used to having a full and then empty stomach.  So they are feeding him every three hours, but to start off that feed took an hour and a half.  When we left they had cut it back to an hour and 15 minutes, and they will continue to shorten the time it takes to feed him until they get to half hour feeds.

Once he is moved to the floor, we're almost home.  He likely will only be there for a few days for us to learn how to  do all of his care.

Once he is discharged, we will probably be back monthly for follow-up with the cardiologist, and depending on how he is doing, that will be changed to less frequently.

So the end is in sight.  We don't know exactly how long it will be, but probably he'll be going home in the next couple of weeks.  Yay, Bennett!

An update

Here are a few updates.  We've both been meaning to post with an update for quite some time now, but sitting down in front of the computer and getting our thoughts down in a coherent manner is difficult.  A few days ago I started making notes to myself of things that I wanted to mention, and it just took me a few minutes to figure out what one of my notes meant.  So, let's get this out before I forget even more.

Bennett milestones-

• He's started getting breastmilk via feeding tube.  They tried this one day earlier in the week and had been giving him too much too soon, so they stopped and started again a couple of days later.  He's now been getting it for a few days with no problems.  They have added some formula to the breast milk in order to give him more calories without increasing the volume of liquid.  They're hoping to help him increase his weight more quickly.  Although I understand the logic behind it, I'm not sure how I feel about this.  Isn't breastmilk supposed to be a superfood that shouldn't need to be supplemented?
• Earlier in the week (I don't remember which day now- Tuesday, maybe?) they turned off the meds that had been paralyzing him.  It was great to slowly start to see him moving around more.  First, his eyes opening, then him reacting to touching his feet, and then moving his arms.  Now he's moving around like a normal little baby.
• On Wednesday he celebrated his 1 week birthday. In true scrapbooker fashion, I made a little sign for him.  I plan to have these every week to begin with, then every month, as a way to show his growth.
• When I was pregnant I knit a pair of socks for him.  We had brought in some other socks/booties but they've all been huge on him.  The hand-knits fit perfectly!  And of the nurses who come by rave about how great they are.  It almost makes me want to knit another pair- except the needles that I used are so tiny it hurts to knit them.
• On  Friday he had his breathing tube removed!  We got to hear him cry.  Such a wonderful sound.  
• Thursday I got to hold him for the first time, and we've been able to hold him pretty much every day since then.  Each nurse has a different way for us to hold him, and some like him piled up with blankets more than others, but it's great to be able to do this.  I just wish I had asked earlier.  We had kind of thought we weren't allowed since there were so many tubes/wires.  I asked one of the nurses on Thursday when I would be able to, and she seemed shocked that I hadn't held him yet.  She quickly made sure that I was able to do so.

Stuff about Mumma-

• Pumping has gotten much better!  There are some better days than others, but overall it's going well.  Monday one of the lactation consultants came by.  She spent about half an hour with me, massaging and squeezing my breasts to work out the clogged ducts.  We got 150ML out of me, compared to maybe the 15-30 I had been getting on my own.  Wow!  I haven't gotten nearly that much since, but it's been going well.  And when I start to have problems I know how to fix them.  And she's come back frequently since then and helps me with little problems I'm having.  Chris and I kid around that Kim is my new best friend.  :)  I was having some problems with my pump yesterday, but Chris and I came up with a work-around.  We'll need to ask Kim if it's a problem with the pump or if it was something with me- maybe another clog or something.
• After the struggles that I was having with pumping, the nurse tonight commented that I have so much milk at the hospital now that I don't need to bring in what I pump at home- we can just freeze it and keep it for ourselves.  I guess it's nice to know I'm already building up a stash.  Apparently I'm a very good producer and I have no issues with my supply.  She also suggested that since I have such a good supply I shouldn't set an alarm at night and that I should let myself sleep, but I disagree with that advice.
• When I was over at the Brigham, the nurses were constantly checking my feet to see if they were swollen.  They never really got that bad.  Monday they were very swollen.  Tuesday they were just as bad.  Wednesday I went over to my OB's office to follow up on some paperwork and asked if a nurse could take a look at my feet.  They brought me back and had me do the normal OB appointment stuff- blood pressure check, weight check, and urine check.  Odd just for swollen feet, but whatever.  Apparently my blood pressure was rather high.  20 minutes later they re-checked and it was fine.  But since it was high my OB freaked out.  No one ever looked at my feet, but she sent me off to have some blood work done and to come back the next day for another BP check. She also wrote me a script for a diuretic in case I was retaining extra fluid.  By the time I got home, without taking any pills, my feet were much better.  The next day, my blood pressure was fine.  This OB likes to worry about everything!
• One nice thing about going back to the OB was that because of the weight check, I was able to see how much I've lost.  But the results surprised me.  On Wednesday, a week after giving birth, I had only lost 5 pounds.  That's not much more than Bennett weighs.  We had just eaten, so that may have accounted for some of it.  By Thursday's appointment I was down another 2 pounds, so I imagine a lot of it was food/water weight.

Medical Update

Daddy Chris here to give you an update on all that has happened to Bennett over the last week (because somehow I've managed to remember most things that have happened).

When Bennett was born Wednesday night the doctors and nurses in the Brigham NICU were very pleasantly surprised with how pink he was and how good his blood oxygen levels were given the severity of his heart defect.  They did all the normal things for a new baby-weighed him, put the ointment on his eyes, etc.  During the time that they were doing their thing a cardiologist from Children's was talking to me about the heart defect that Bennett had.  None of what he told me was new, but it served to make me focus on what he was saying instead of worrying about what the others were doing.

Once they got through there checklist he was moved over to Children's.  Chris and I had discussed earlier in the evening about whether they would use the same bridge that everyone uses or if there was some other way to transfer patients.  Turns out they use the same bridge.  On the way over the bridge the cardiologist from Children's pressed his ID badge against the card reader and the door opened.  While we waited for the rest of the caravan I asked him how I was supposed to get back to the Brigham.  He looked at me kinda funny and I said

"You used your ID to open the door.  I don't have an ID that opens the door.  How do I get back?"

Pauses...."I don't know.  Maybe the ICU nurses will know how to do that."

Let me just say now, the CICU nurses at Children's are the greatest.  From the time I walked into Bennett's room there was a nurse there explaining exactly what they were doing, making sure the 3-4 doctor's who came in knew that I was the Dad, made sure everyone knew that he had a name and what it was, and was so calm about it that I just relaxed.  The Brigham NICU people seemed to be in a rush.  All of the Children's doctors and nurses seemed very calm.  Each doctor that came in the room took a few minutes to introduce themselves and chat with me before leaving again.  Liz, the nurse that was with Bennett his first night was great.  She explained everything that the others were doing and when the commotion had died down took the time to explain what all the numbers on the screen meant and what they should be, what the next steps were going to be, and then very politely said he was in for a long night and I should probably go see how Chris was doing.  She then found a security guard to escort be back across the bridge to the Brigham.

At 4am Thursday morning, the phone rings.  They are going to put Bennett on some drugs that will make him paralyzed and painless.  I asked something to the effect of should we come over and he told me that there would be a lot of people in the room.  We discovered this is polite doctor speak for "don't come over here right now."  When we went to see Bennett later that day he was completely immobile and had many tubes and wires all over his little body.  The doctor came in and said that they were going to have to do surgery as soon as the surgeon finished with his current operation.

This is when the people started showing up.  The anesthesiologist showed up to explain what they were going to do and then we had to sign the consent forms.  Later a second anesthesiologist came in and said the same things.  Then the cardiologist came in and explained briefly what they were going to try.  Later the surgeon came in when he had finished his other surgery and explained exactly what he was going to do.  He told us that they were going to try tying off the ductus arteriosus and seeing if that worked before permanently closing the ductus.  He said once they tied it off they may have to wait 2-3 hours before they could determine if it worked.  This would mean that Bennett was on the table just being watched.  If that didn't work they would attempt to separate the tricuspid valve from the wall of the heart and possibly repair or replace the pulmonary valve.  All this was expected to take at minimum 6 hours.  Then the nurses started coming in and re-explaining everything.  Somehow the two of us held it together.

At 1o'clock they were ready to take Bennett down for surgery.  We were offered the chance to kiss him and hug him.  Up to this point we didn't know that we could kiss him, so we both declined.  When they wheeled him out of the room, I started crying.  We stayed around for about another 10 minutes and then made our way back to the Brigham to wait.

At 3:20 I received a call saying they had made the first incision at 3o'clock.  The next call would be when he went on the heart bypass machine.  I went to take care of some paperwork at Children's and missed a call from the surgeon.  At 4o'clock they had finished the surgery.  Closing off the ductus had had such an immediate effect that they didn't need to try anything else at that time.  Later that evening we went to see him.  This was when the anesthesiologist told us that he had the most lines in the hospital.  The cardiologist came by to visit and tell us how the surgery went.  For the time being his lungs were getting the blood they needed.  It wasn't flowing in the proper way, but it was getting there.  We stayed for a little while longer that night.  The nurse told us that the first 12 hours after heart surgery are the most critical, with the 12th hour being the absolute most critical.  This timeline made 4:30am the critical hour.

The next morning I woke with a start, looked at the clock and realized it was 6am.  I looked at my phone and realized no one had called.  The critical hour had come and gone with no phone call.  I called my parents who were driving up from Georgia and told them the good news.  When we arrived at his room that morning the nurse told us that he had had a very uneventful night.  His blood pressure dipped around 3am but obviously not enough to warrant a call.  He had made it past a very critical stage.

The next few days saw lots of little changes.  He was very swollen from the surgery and the extra fluids they were pumping into his body.  However, he was peeing like a champ which was helping to get rid of the fluid.  As part of the surgery they hadn't closed his chest.  They put a green membrane over the opening that was sutured to the surrounding skin.  This allowed room for the impending swelling and gave them quick access if something should go wrong.  Before the surgery they offered to show us another baby in the unit with a similar membrane, so that we wouldn't be shocked when he came back.  We said no.  We could have seen a hundred babies that had had their chests opened this way and it wouldn't have prepared us for seeing OUR son with his chest open like that.  At this point he had at least a dozen pumps that were giving him controlled doses of medicine.

Saturday saw him with a few less pumps and lines.  Sunday was a status quo day.  At some point we brought in a blanket and Paddington Bear to put in his bed.  We started adopting the policy that no news is good news.  When we arrived in the morning the nurses would give us a very thorough update of how Bennett had done overnight and what was expected of him for the day to come.

On Monday we decided to run some errands on our way to the hospital, so we got there a little later than normal, probably around 1 or so.  Chris had to go pump again.  I feel bad because whenever we're there, she has to spend so much time pumping and I get to spend time with Bennett.  I know this will change once he comes home and I go back to work, but right now I feel a little guilty that I get more time with him.  I've also discovered that I really only talk to him when there is no one else in the room.  These are mainly lectures on how he really has no choice in the matter, he's going to get better.  We brought a book from Chris' Shower to read to him but didn't get the chance.  I picked "The Little Engine That Could."

While Chris was away pumping on Monday, the cardiologist came in said they were going to close up Bennett's chest.  They felt he had done well and saw no reason to leave it open longer.  Within the hour they would come in and close him up.  This was at 2pm.  By 5pm they were just getting ready to sew him shut.  We stayed until a little after 5pm and then headed home for my birthday dinner that my dad was preparing.  Again, no news is good news.  At 8pm that night I called to find out how Bennett had done, the nurse told us that everything had gone perfectly.  They didn't even have to adjust his meds, and his blood pressure was nice and steady, which was a major concern.  Quite possibly the best birthday present I will ever receive.

When we went in to see him this morning, the first thing we both noticed was that we could see a lot more of him.  Overnight he had lost quite a few of his lines.  And his hands were now visible since both IVs had been removed.  We were also told that they had stopped the medication that was making him immobile.  This drug takes quite a while to get out of his system, but it meant he would start to open his eyes and maybe move a bit.  We were happy to touch his new found hands.  After he had his diaper changed we put on some socks that we brought from home.  They go pretty much to his knees.  And we put a hat on him.  I was so scared to move his head that the nurse had to lift up his head so that I could put the hat on.  Again, the hat is way to big for him and it was the smallest we had.  Around 1pm Kelly showed up and we went to look at Bennett again.  I noticed that his eyes were open a little wider than before.  As Chris went to get the camera, he closed them.  We got very excited that he was opening his eyes.  We stared at him for quite a while as he tried to open and close his heavy eyelids.  For Chris, who hadn't seen him move at all, this was wonderful.  Later when Uncle Andrew and Aunt Gentry stopped by, Bennett entertained us by opening his eyes very wide and then closing them again.  I put my finger in to hold his hand and two of his fingers twitched.  The paralytic was starting to wear off.  Hopefully tomorrow he'll be more responsive.  They also stopped his Fentinol, which is his pain medication.  So from Friday having a dozen pumps, he now only has 4, and one of those is his Lipids (yum, fat).

So now it's all about meeting goals.  He needs to be weened off the Nitrous Oxide which is helping his lungs, the breather which is breathing for him (this was needed while he was paralyzed, but should be less needed as he becomes more active), and start taking breastmilk through a feeding tube, ultimately moving to at least a bottle if not breastfeeding.  Once he does all of these things he may be allowed to leave the Cardiac ICU and go to another wing on the same floor.  But leaving the CICU is one step closer to coming home.  He will need more surgeries to fix his heart fully, but the doctors hope that it will be months, years or even a decade before they have to do that surgery.  But they just don't know.  The longer he is out of the hospital and growing, the greater their chance of success with later surgeries.

The nurses have told us from the beginning that they are the most expensive babysitters Bennett will ever have.  I would gladly pay every penny the day he comes home.

He's Here!

I'm sure most readers of this blog have heard already, but Bennett Henry Bredford made his entry into the world on Wednesday at 10:20pm.  He weighed in at 4 lbs, 4 ounces and is 17" long.

There's plenty that can be told about why he came early and how he's doing, but I'm too tired to think!  The short answer is that due to late decels noticed during NSTs that led to a few hours of continuous monitoring and ultimately the decision for him to be delivered (c-section). 

Thursday afternoon he had his first surgery which went very well.  However the anesthesiologist commented that little Bennett has the most wires attached to him of any baby here at the hospital!  Not sure that's a claim to fame that we want.  But they keep telling us that he's looking good- so we're going with that.

All grandparents have now had a chance to meet him.  Grampa and Nana (Jerry and Liz) came by Thursday night.  Mimi (Carolyn) came this morning and Grandma and Grandpa Tedford drove up and arrived this afternoon.  Uncle Andrew and Aunt Gentry will be by at some point tomorrow.

I'll try to get some more thorough updates posted as they do help me wrap my brain around everything.  Plus they're a nice record of everything we've gone though.  However, my brain is mush.  I don't think I was ever able to fall asleep on Wednesday night.  I did sleep a bit last night but had to get up a few times to pump- really no different than if we were at home and I had to get up to feed him.

A Mini Update

Today I went back for another NST and a BPP.  Passed the BPP with flying colors.  Amazing what can happen when you get a chance to eat lunch, and you drink a Coke on the ride over.  :)

Unfortunately, Baby didn't pass the NST.  However, the nurse commented afterward that some babies never pass a NST, so she didn't seem overly concerned.

Back again on Wednesday for another day at the two hospitals.  And in theory, we scheduled appointments far enough apart that we'll have time to get lunch.

Today was a LONG day!

Here's how the schedule was supposed to look.
7:45 (try to arrive at 7:30)   Ultrasound
9:30 MRI
11:00  Fetal ECHO
1:00  OB appointment
2:15  Ultrasound and BPP

Yeah.  I think the theme of the day was that we (or the doctors) were always running behind schedule.  We didn't finish up until 5:00.  And we didn't really get a break at all except for about half an hour between the MRI and the ECHO.  We got a couple of cute ultrasound pictures, which I'll have to scan and post later.

So how did it go?

Ultrasound went well.  Last week at my BPPs it was sometimes hard to get a good look at some things because Baby wasn't really moving around that much.  So in preparation, I had lots of OJ on our way to the hospital so that Baby would wake up.  It worked.  Baby was moving around a lot, doing lots of practice breathing, etc.  I'm not sure if she actually did an official BPP or just quickly looked at those items, but she said we got an 8 out of 8.  Also, based on measurements that she took, she estimated that Baby currently weighs about 3 pounds, 14 ounces.  And I think in general, everything looked good (other than the heart).

Next up was the MRI.  Very weird experience.  I've never thought of myself as being one who is claustrophobic.  I had closed my eyes on my way into the MRI machine and opened them briefly once I was in.  I had to close them immediately.  Very tight space.  So I kept my eyes shut and tried to focus on my breathing.  I would start to doze off a bit, and then there would be loud noises and I'd wake up.  Not really sure how long it took- I think about 20 minutes.

We didn't get a chance to speak with the doctor who performed the MRI, but the cardiologist spoke with her and said everything looked ok.  After the MRI, we had a little bit of a break so we went and got a snack.  We thought we would have enough time to grab lunch before the OB appointment, so we kept it light.

So next up was the ECHO.  Overall not too bad.  Not sure what the difference was, but he seemed much more personable today.  He didn't feel that things had worsened at all since last week, which is good.  And we had plenty of time to go over the list of questions that we had.

• After delivery, how much time would we get with the baby before he/she has to go off to Children's?  Essentially none.
• What are the odds like?  Last week he mentioned the baby may not survive the pregnancy or delivery.  Really no concern from him at this point re pregnancy or delivery, but he'd estimate that post-delivery, there's a 70-80% chance the baby may not make it.  There are multiple options for things they can try once the baby is born, and probably won't be able to really decide what to do until after Baby is born.
• Any reason to deliver early?  How would that be determined? At this point he felt the only reason to deliver early would be if there were a benefit to immediate surgery.  He did not feel that there would be a benefit.
• C-section vs vaginal delivery?  Going into this I was kind of assuming I would have to have a section.  We kind of figured that a normal birth would stress the baby out too much and be bad for the heart.  Although he said it's ultimately up to my OB, he didn't feel there was a need to go with a section based on Baby's heart.
• After the baby is born, would Boy Chris be able to go with Baby to Cardiac ICU?  Yes!  I know it's probably completely unfounded, but I had this fear of him not being able to go with the baby, and then me not being able to find him/her.

So the next stop was to go over to the Brigham to meet with one of the OB nurses.  We had been told that none of the OBs would be available, but this would at least give us an introduction to the practice, etc.  Well we get there, running at least 20 minutes behind scheduled.  The nurse asks a few questions, really just trying to get a sense of my medical history- at least in regards to this pregnancy.  And she mentioned that she was hoping that one of the OBs would be able to meet me after my ultrasound.  Time for a few questions.

• I forget exactly what we asked, but it came up re inducing.  Basically, without a medical reason, not before 39 weeks.  And it could be up to me.  If I want to wait and see what happens, they can do that.  There are some benefits of being induced in that the medical support team that we'll need for the baby will know when it's happening, but if I were to go when be baby's ready, it wouldn't be a problem to get the necessary people to the delivery room.
• Another interesting comment, was that she said the baby would go first to the NICU at the Brigham.  This was surprising, because our sense from the cardiologist was that that the baby would pretty much be going straight to the Cardiac ICU at Children's.

Time to go for my ultrasound and BPP.  Keep in mind it's after 2:00 at this point.  Possibly closer to 3ish.  I haven't eaten since a chocolate croissant at 10:00. Baby was not co-operative.  They ultimately were unable to see the baby take a practice breath.  Didn't matter that Baby had done so earlier in the morning.  Also, based on the measurements that they took, they estimated that Baby weighs 3 pounds, 4 ounces.  So although the measurements from the morning may have put Baby in the 50th percentile, they were showing Baby as being in the 5th percentile.

Since they couldn't get Baby to do a practice breath, they sent me for a Non Stress Test (NST).  What this measures is Baby's heart rate.  They try to compare a normal rate vs any change in rate when Baby moves around.  But again, we had the issue where Baby didn't want to move.  By now it's 3:30/4:00ish.  I still haven't eaten.  So I failed this test as well.

After the NST it was back to meet with the OB.  First there was some confusion re where one piece of my paperwork went.  Then they wondered if there had been any weights given at earlier ultrasounds.  You would think, with as much as I've been going in for one test or another this would have been frequently measured, but apparently that wasn't the case.  They found one ultrasound from back in July that had a weight.  But it's hard to tell if the low weight estimate is because the baby is just generally growing at a slower rate, or if the heart problems are impeding the weight gain.  And then there's also the 10 ounce discrepancy between the measurements taken at Children's and those taken at the Brigham.  So what's next?

I get to go back tomorrow (Thursday) for another BPP and NST.  But since it was now 5:00, they couldn't schedule it as everyone has gone home.  So I get to call in the morning and have them tell me when to come in.  Hopefully it's not at a really inconvenient time.  At least I should be able to eat before hand.  Hopefully that will help things.

As to other follow-up.  Back in a week to meet with the OB again (still needs to be scheduled) and also back on Wednesday for another ECHO.  Don't know yet if there will need to be other BPPs and NSTs scheduled in there as well.  I hope not!

When we finally left, we grabbed some dinner at a local Bertucci's (Chris really wanted their rolls and oil) and then we headed home.  In the end of rush hour traffic.  Blech!  I think we were both very glad to finally get home- about 13 hours after we left this morning.

Ugh

No lie.  Today was a tough one.  I tried going to work after the appointment and just seeing a friend brought me to tears.  And a little while later Chris called and I could barely talk to him.  So I went home, with a bit of crying in the car.  Unfortunately my coping mechanism at the moment is to just want to ignore everyone.  Not exactly all that practical.  So why are things so bad?


Yesterday I got a call from Children's Hospital in Boston.  They could schedule me for an ECHO today, or next week.  Um, we'll take today, please.  So we go in this morning.  Ugh!  9:30 appointment, which meant we were sitting in rush hour traffic for 2 hours.  Got there a little bit late.  Finally get into the exam room around 10ish.

First one doctor takes a look, and then another one (the one we were scheduled to see) comes in and does his ECHO.  Many times I was finding myself dozing off.  This actually frequently happens for me- it's a dark room, you're lying on a bed. Plus it was hard to see anything because they only had the one monitor for them to see (at UMass they have a second monitor positioned so that the patient can watch what's going on).  So not only were there the two of them, but then there was also someone who I presume was a student.  And they were then all speaking in hushed mumble-y tones, not to mention they were speaking doctor-ese, so it was hard to know what was going on.

After they were done we go into another room to discuss the findings.  At this point they also had a nurse join us.  First they ask what we have been told from previous visits- what brought us to Children's.  Then the doctor starts explaining the situation.  To begin with, it's nothing new.  Which is actually ok.  Nice to know he was in agreement on the other findings.
- Tricuspid valve not working properly, causing the right ventricle to become enlarged
- Also an enlarged right atrium
- Small amount of blood going forward to pulmonary artery showing that there may not be an actual problem with the pulmonary valve (in earlier visits it was working fine- only on Tuesday did he notice it wasn't working, probably due to the enlarged ventricle and the messed up tricuspid valve)
- Left ventricle and right ventricle function mildly depressed. (this is a note from the nurse- I'm not entirely certain what this means.  I know the doctor did mention that the left side also was not properly functioning.)
- Very concerning heart defect (in fact, he said that on a scale of mild, medium, severe our baby has a very severe heart defect)
- Baby may not survive pregnancy or delivery

I think we were more or less holding it together until that last one.  What?  Where did this come from?  However, no mention of wanting to deliver early.  The plan for now is to come back next week for another ECHO and an MRI.  Also mentioned was that I should meet the NICU team, but that hasn't been scheduled yet.  I'm also supposed to keep my BPP appointments at UMass.  This doesn't quite make sense to me.  Wouldn't they want me to just have everything done all in one place?

Chris and I both agree that we liked the old cardiologist better.  He had a much better way of letting us know what was going on, but not freaking us out.  However, maybe he didn't realize how bad things were.  I don't know.  We also agree that we liked the hand-holding that we got at UMass- they took care of all the scheduling, etc.  I guess it helps that everything is in one place.  With the current situation we're dealing with two different hospitals.  Although luckily they are adjoining.

So what's the plan?  Surgery is in Baby's future.  The goal will be to repair the tricuspid valve and the pulmonary valve if needed.  Depending on how those go, other surgical options may be needed.  I'll deliver at Brigham & Women's with the baby being immediately transferred to Children's to go to the cardiac ICU.  In fact, I believe the plan is to have some cardiac doctors on hand when I deliver.  Although there is no way to know exactly how things will play out, we can expect Baby to have to spend about 4-6 weeks in the hospital.

Another thing that is interesting to note.  Given the problems that they are seeing, they would usually see messed up circulation in other parts of the body, blood flowing the wrong way through the umbilical cord, etc.  However, this isn't the case with our baby.  That's all looking normal.  He said he was very surprised by it.

Mini update

Today was the first of my twice weekly appointments. As annoying as I'm sure this will prove to be, in some ways I hope I have to go through with this for a while, as that means that Baby gets a chance to grow more before being born.

On Tuesdays and Fridays I am scheduled to have a BPP (Biophysical Profile) and on Tuesdays I also meet with the pediatric cardiologist for follow-up Fetal ECHOs. The goal is that with more frequent monitoring, they will be able to better decide what steps to take. Next week I am scheduled to meet with the High Risk OB team and the NICU doctors.

Luckily both Chris and I have very understanding bosses who are being very accommodating to our new schedules.

 Having said all that, things have a way of changing.

- We've been following the degree of baby's tricuspid regurgitation and the effects it has had on the overall circulation.  Today the overall heart function still appears to be good, althuogh there is still a severe degree of TR.

- There is enough TR that now the right ventricle is having difficulty opening the pulmonary valve.  This means that the blood going out to the lungs has to flow from the aorta to the ductus arrteriosus and then unto the pulmonary arteries.

- This means that after birth, the baby will need a medicine called prostaglandin E (akak "prostin") to keep the ductus arteriosus open.

- It is possible that the baby could require a surgery to create a stable source of pulmonary blood flow.  This is called a modifies Blalck-Taussig sunt (BT shunt), and it is very much like an artificial ductus arteriosus that does not require Prostin.

- I think the goal will be to get the baby to an adequate weight to try and repair the tricuspid valve.  The possibility exists that for technical reasons this may be impossible.  If this is the case, the baby may need a few surgical procedures over the first few years of life to re-route blood to the lungs.

So, based on today's findings, I am once again being transferred.  It now looks like I will be delivering at Brigham & Women's, which has the benefit of having Children's right across the street.  If I were to stay in Worcester, then the baby would more than likely have to be taken by ambulance to Boston, so it makes more sense for us to be there already with the more experienced team in place.

At this point I don't really know what this will mean in terms of appointment schedules.  Everything mentioned above is what was in place at UMass.  I assume it will continue to be twice a week.  I'm awaiting a call with more details.

Triscuspid Regurgitation, and what it means for our baby

So this is a diagram of a heart that the doctor drew for us. (If you click on it, you'll be able to see it larger.) He is a pediatric cardiologist who also specializes in prenatal heart development.

What this shows is a view of the heart, as if you are facing the baby, so the right side of the heart is actually shown on the left. The arrows show blood flow. He also wrote out a bunch of info for us, which is rather helpful as it helps us to remember what was said. So, here are his notes.

Tricuspid Regurgitation (TR)
- leakiness of the main valve on the right side of the heart
- Your baby's TR has gotten worse over time. It appears that one leaflet does not move normally, causing the leaflets to not close normally --> this leads to valve leakiness.
- The TR is causing the right side of the heart to stretch out. This has become significant enough that the heart is competing with the developing lungs for space in the chest.
- For now, the blood flow patterns in the various arteries and veins in the body appear normal. This might change if the TR gets worse. We know that changes in the blood flow patterns can herald fetal distress and may be an indication to deliver the child early.
- Any decision to deliver the infant needs to be thought through carefully. Delivering an infant prematurely has the main downside of having immature lungs- this is complicated by the fact that the lungs appear to be squeezed by the dilated heart. We will be able to do things for the child, however, that we would not be able to otherwise.
- Risks of keeping the baby in mom longer include: (1) worsening of the TR to the point that the pulmonary valve fails to open (the right ventricle can't guarantee enough pressure to open the valve). This could cause the infant to be critically ill at birth. (2) congestive heart failure- the blood "backs up" in the right side to the point that it interferes with normal circulation, resulting in fluid accumulating and the potentially damaging side-effects (this is called "hydrops"). (3) if the heart continues to dilate, it will continue to compress the lungs, interfering with normal development.

I have arranged for you to meet with several other doctors to take a team approach to this problem. We will keep in close contact and monitor the baby carefully.

Another thing to note, is that in fetal development, the right side of the heart does about 2/3 of the work, while after delivery it does 1/2 the work. However, due to the various issues, the right side is currently doing more than 2/3 the work.

The other appointments he mentions haven't been set up yet (we were there at the end of the day) but it looks like I'll be going in twice a week for various tests- once a week with him, and other visits with other people. Also, I was planning to deliver at a different hospital, but this one has a better NICU, so I will be transferring my care to a doctor at this hospital.

And as to when we'll be meeting Baby Bredford? Well, in a perfect world, the heart problems don't worsen, the lungs develop enough, and I go to 37 weeks. But of course we don't live in a perfect world. So Baby will be here at some point in the next 6 weeks. By going in twice a week they'll be able to keep a close eye on things and determine if Baby will be better cooking longer or coming out, knowing that he/she isn't fully developed.

More pictures of the little one

We went back today for a Fetal Echocardiogram. Pretty much everything looks good. And apparently all babies have holes in their hearts. They need them in utero, and then they usually heal when born. Anyway, there is some slight "leaking" as the blood flows between two of the chambers of the heart, but the doctor said it's nothing to worry about; it's not something that concerns him. This was wonderful news! Just to be safe, we go back in another 4 weeks to get another look. Oh, and the heart is now about the size of a quarter. Definitely a lot bigger than a few weeks ago when it was the size of the tip of your pinkie.

And then after the fetal echo, they did a very quick ultrasound. I liked one of the profile pictures so I asked if we could have it, and then she kept printing more. She printed out 8 for us- here are my favorite three. But we were shocked. In the past we've only walked out with one or two pictures. I think the one with the feet is my favorite of all of them.

Successful Dr Appointment

I had my first appointment today with my OB. The previous appointment had just been with the nurse. Observations:

• This appointment was perhaps a little longer since I hadn't had a pap done in about 2 years. So it was more or less just like an annual appointment. I can't imagine how quick some of these future appointments are going to be.
• I got to hear the heartbeat. She said that normally it can't be heard (via Doppler) until 12 weeks, but since I'm on the thin side she'd give it a try. It took her a while (she kept hearing my heart beat) but eventually she found it. Baby's heart is beating at about 150 beats per minute. This is good.
• Getting to hear the heartbeat was nice, because even though I know I'm pregnant sometimes I just feel normal so you start to wonder, am I still pregnant?
• I was able to book the ultrasound! (June 8th)
  
• I also was able to book appointments through the end of September. She was originally just going to book my next appointment and I asked for 1st appointment of the day so that I would miss less work. They only had afternoon left for that one and the next one, but she went ahead and got me early times for all the rest.
• June 8th will be an appointment filled day because I have the ultrasound and a normal appointment. Of course they are at two different locations. But better to get them done in one day rather than taking up time on two days.
• I got cleared to take Claritin for allergies. Benadryl is also safe.
• I forgot to ask if I can take Sudafed. When I fly the pressure really hurts and my ears feel stopped up for at least half a day after landing. Sudafed alleviates this. In May I'll be flying for work so it would be great if I could take it. I'll make sure to ask at my next appointment, which is the week before my trip.
• My weight on the office scale was 4 pounds higher than my weight at home this morning. The difference makes sense (clothing, food/liquids in my stomach) but I wish my "official" weight wasn't that high already.
  

First Ultrasound

We had our first ultrasound this morning. The purpose was to pinpoint my due date more accurately. When I went in she asked how far along I thought I was. I said between 7 weeks and 7 weeks, 4 days.

Based on her calculations, I am 6 weeks, 6 days- which I also would believe (I had been leaning more towards only being 7 weeks, and this is just 1 day away). Not a big difference either way, but more important later on, especially if I'm late.

So we got three pictures. None of them really look like anything. The smaller blob next to the baby (love how she labeled that since it's so hard to tell) is the yolk sac. It still somehow doesn't seem all that real to me. Maybe because it doesn't look like anything yet. The part Chris really liked though was when we got to listen to the heart beat. He started grinning when he heard that.

I guess I'll be redoing my week 7 journal since I now have more accurate dates.

First Appointment

Today I had my first appointment. It was with the nurse and they refer to is as a "teaching" appointment. Basically getting all my family/medical history and then giving me various brochures and pamphlets with dos and don'ts. And then I got sent to the lab to have 4 vials of blood drawn. I ended up having to be stuck twice because the first one wasn't really flowing. Not sure if this is because I was stuck by an intern or since I hadn't had much to drink yet. Whatever, no big deal.

The exciting news though, is that since my cycles had been all over the place (27-40 days long) and I think I ovulated at a date different than what is "normal", the nurse asked me if I wanted to have an early ultrasound done for dating purposes. Um, ok. Go ahead and twist my arm. So next week I get to have an early look at my little lentil. Yay!

It's official

I left work early yesterday so I was able to go get my blood drawn for the official test. I probably could have called the doctor earlier this morning to get the results but I waited until the afternoon.

So I just got off the phone. It's official. I'm pregnant. (Wow it feels weird to say that. I think it's going to be even weirder to say it out loud.) I have my first two appointments set up. The first is in about a week and a half with the nurse. The woman I spoke with referred to is as a "teaching" appointment. Then my first appointment with the doctor won't be until April, when I'm in about my 10th week. I asked when the first ultrasound is, and it's in about weeks 18-20. I wish we were going to have that before we start telling people, but I guess I'm ok with waiting. I just looked at the calendar and realized that the US (ultrasound) appointment should be right around the time that Chris' parents are visiting.

Starting the official process

I called my doctor's office today. I know it's silly, but I was kind of nervous making that call. First step is to get a blood test for the official confirmation. So I'll get to the lab either after work today or first thing tomorrow morning. Then by Friday I can call my doctor's office to get the official results.