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.
Thursday, September 9, 2010
Wednesday, September 8, 2010
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.
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.
Tuesday, September 7, 2010
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.
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.
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.
Thursday, September 2, 2010
31 Weeks
Your baby now weighs as much as four navel oranges. (Length: over 16 inches, head to heel.)
31 Weeks- Development
Your Baby This Coming Week
Your baby's total length is 18.9 inches (42cm) and she is perfectly formed! She measures about 11.6 inches (29cm) from crown to rump. All she has to do is fill out more. Your baby weighs almost 4 pounds (1800g). If she were to be born now, she would still need to be incubated as she has insufficient fat stores to keep it warm.
Your baby can distinguish between light and dark.
Your baby can hear the outside world quite well now, and can also hear the sounds of your heartbeat, your digestion and the blood rushing in the umbilical cord. The pitch of women's voices are in the range babies are most able to hear over all the internal background noise. Your baby is already familiar with your voice and will be able to recognize it after birth.
Your Body This Coming Week
Your uterus now extends to about 5 inches (12cm) above your belly button. You probably continue to feel tired and may sometimes feel dizzy. You feel your baby's kicking regularly. Your baby is probably in the head down position by now and is long enough that his legs can reach your ribs. The pressure of your baby's legs can make your ribcage sore. Taking care to sit or stand straight may alleviate this discomfort somewhat. You may feel short of breath, have heartburn, round ligament pain, a stuffy nose and other pregnancy symptoms. Your pelvic joints may have expanded for the birth and this may cause some discomfort. You may feel a desire to "nest" which may make you want to bake, clean and get things in order around your home.
31 Week Journal
How far along? 31 weeks
Total weight gain/loss: Up 2 more pounds. If things continue at this rate, I'll be huge!
Stretch Marks: No change.
Sleep: Decent. The warm weather returned, which of course makes it a bit more uncomfortable.
Best moment this week: As uncomfortable as they sometimes can be, I like feeling the extra jabs as Baby moves around.
Worst moment this week: Well, if you've read last night's post, you'll know how the week ended. Other than that news, it's been a pretty good week.
Movement: Remember the pressure that I was commenting on last week? Well it has now sometimes morphed into a game of "guess what body part that is". Normally I can't really tell, but there is a difference between hands/feet and head/butt.
Belly Button in or out? I think I'm officially going to say that it's flat now. With maybe a tiny little bit being an outie.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: Eager to meet Baby, but also a bit anxious and certainly willing to wait as long as necessary.
Weekly Wisdom: Try not to stress about things that are out of your control.
Milestones/Fun Moments: Got to see Baby again- just hate the circumstances.
What we need to do: The nursery is now all freshly painted and things are more or less back in place. We still need to paint the doors and the dresser, but at least we can move around a little better. Otherwise I feel like we're in a pretty good place. Need to get the carseat, I could use some more cloth dipes, but otherwise more or less all set. Oh, and a breast pump.
And now for a game... Click here to enter a guess in our baby pool.
Total weight gain/loss: Up 2 more pounds. If things continue at this rate, I'll be huge!
Stretch Marks: No change.
Sleep: Decent. The warm weather returned, which of course makes it a bit more uncomfortable.
Best moment this week: As uncomfortable as they sometimes can be, I like feeling the extra jabs as Baby moves around.
Worst moment this week: Well, if you've read last night's post, you'll know how the week ended. Other than that news, it's been a pretty good week.
Movement: Remember the pressure that I was commenting on last week? Well it has now sometimes morphed into a game of "guess what body part that is". Normally I can't really tell, but there is a difference between hands/feet and head/butt.
Belly Button in or out? I think I'm officially going to say that it's flat now. With maybe a tiny little bit being an outie.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: Eager to meet Baby, but also a bit anxious and certainly willing to wait as long as necessary.
Weekly Wisdom: Try not to stress about things that are out of your control.
Milestones/Fun Moments: Got to see Baby again- just hate the circumstances.
What we need to do: The nursery is now all freshly painted and things are more or less back in place. We still need to paint the doors and the dresser, but at least we can move around a little better. Otherwise I feel like we're in a pretty good place. Need to get the carseat, I could use some more cloth dipes, but otherwise more or less all set. Oh, and a breast pump.
And now for a game... Click here to enter a guess in our baby pool.
Wednesday, September 1, 2010
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.
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