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.

32 Weeks

Your baby is taking up more and more space in your uterus and weighs as much as a large jicama -- about 3 3/4 pounds. (Length: about 16 3/4 inches, head to heel.)

32 Weeks- Development

Your Baby This Coming Week
Your baby now weighs about 4.4 lbs (2000g) and measures about 12 inches (30cm) from crown to rump and about 19.4 inches (43cm) in total.
Now that your baby is running out of room in your womb, you can probably see your belly moving as your baby kicks.
Your baby may dream as he sleeps and when awake he may be alert, listening, feeling and even seeing dim shapes.
Though your baby is still inside the womb, he is learning all the time as billions of neurons are making connections.
Your baby is probably in his birth position by now.
Your baby's lungs may be sufficiently developed by now, though if he were born now, he would probably still need an incubator to stay warm.

Your Body This Coming Week

Your weight gain by now may be as much as 28 lbs and you are gaining weight faster than at any other time in your pregnancy. This is because your baby is growing rapidly right now.
Your blood volume has increased 40% to meet your baby's needs and your uterus has grown 500 times since before you were pregnant.
You may be feeling uncomfortable and feel the need to urinate frequently.
You may be experiencing vivid dreams.

32 Week Journal

How far along? 32 weeks
Total weight gain/loss: No idea.  The battery in my scale died, so I can't see if there was any change this week.
Stretch Marks: Nothing new
Sleep: Decent.  Some crazy dreams the past couple of nights, which of course I don't remember.
Best moment this week: Did some shopping over the weekend and picked up a few clothes.  Think I may have found the going home outfit. 
Worst moment this week:Um, yesterday's visit to the doctor.
Movement: Yup.  Plenty of it.
Belly Button in or out? Same as last week.
Wedding rings on or off? They're on still.
What I'm going to miss/What I can't wait for: Ready for all the heart issues to be fixed.  Wish we could be done with doctors.
Weekly Wisdom:Take it one day at a time.
Milestones/Fun Moments: Getting the nursery put together and pretty much ready to bring a baby home.
What we need to do: Fix Baby's heart!

Don't forget, you can try to guess when Baby will be here... Click here to enter a guess in our baby pool.

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.

31 Weeks

Your baby now weighs as much as four navel oranges. (Length: over 16 inches, head to heel.)