Things are still looking good. Today's report was about what we expected. We're up to 1.4 CVR, so the mass is still growing, but it is still not at the point where they are too worried about heart failure (1.6 CVR). The heart is continuing to function well. We are past 25 weeks, and starting around 26 weeks, we hope to see the mass start to shrink on its own. Baby is growing well and is up to 1 lb. 14 oz.
We now have a tour of the NICU and a consult with a pediatric surgeon scheduled at Riverside Hospital. We still don't know whether or not we'll have to deliver there, but I guess we are preparing for it just in case.
While we were waiting for the doctor to come in and tell us the results, we started counting the number of ultrasounds I've had in my lifetime. I'm up to 14 right now. It's a good thing they're painless! Scheduling so many appointments is a challenge, but it's really fun that we get to see Baby every week. Today, we brought home several pictures of Baby and even a short video. I'll have to see if I can upload it.
Wednesday, January 26, 2011
Thursday, January 20, 2011
Faith is being sure of what we hope for...
Tuesday, January 18, 2011
God and Steroids are a Good Combination
The numbers are looking good! Thanks for your thoughts and prayers this week!
I feel like we get an education every time we do another ultrasound. Here's what we know now: The numbers that we're using to measuring the size of the mass represent the mass's size in relation to the baby. Makes sense, now that I think about it. The actual size of the mass is less important than it's size in relation to the baby. If baby's growth outpaces the growth of the mass, we're keeping ahead of it and staying out of the danger zone. So, this week, the we're at 1.1, down from last week's 1.23. So, the mass hasn't necessarily shrunk, but it has at least slowed significantly (or maybe the baby had a growth spurt).
Also, we learned that fetal surgery is only a possibility until about week 26. After that, they figure a baby has a better chance if being cared for outside the womb. We are at 24 weeks, so we only have a couple weeks to go before that possibility is off the table. I'm trying to mentally cross it off the list already. Since everything looks good this week, the chances of things going down hill that quickly are very slim. It is a weight off my mind. Even though we knew that it was unlikely that Baby would need surgery in utero (even as close as he was to the danger zone), the logistics of having to travel for surgery were occupying far too much of my very limited mental energy.
We were also told that we are a little further from the danger zone than we thought. Today's doctor said that the number to watch for is actually 1.6, not 1.3. If they only knew how this is messing with my mind...
The doctor talked with us about setting up an appointment to talk with a pediatric surgeon. That should happen sometime around week 28. She also talked about meeting with NICU staff to give us an idea of what to expect if Baby ends up there after birth.
That's about it for this week. Hopefully from here on out, this blog will get really boring, with a "still looking good" report each week. :)
I feel like we get an education every time we do another ultrasound. Here's what we know now: The numbers that we're using to measuring the size of the mass represent the mass's size in relation to the baby. Makes sense, now that I think about it. The actual size of the mass is less important than it's size in relation to the baby. If baby's growth outpaces the growth of the mass, we're keeping ahead of it and staying out of the danger zone. So, this week, the we're at 1.1, down from last week's 1.23. So, the mass hasn't necessarily shrunk, but it has at least slowed significantly (or maybe the baby had a growth spurt).
Also, we learned that fetal surgery is only a possibility until about week 26. After that, they figure a baby has a better chance if being cared for outside the womb. We are at 24 weeks, so we only have a couple weeks to go before that possibility is off the table. I'm trying to mentally cross it off the list already. Since everything looks good this week, the chances of things going down hill that quickly are very slim. It is a weight off my mind. Even though we knew that it was unlikely that Baby would need surgery in utero (even as close as he was to the danger zone), the logistics of having to travel for surgery were occupying far too much of my very limited mental energy.
We were also told that we are a little further from the danger zone than we thought. Today's doctor said that the number to watch for is actually 1.6, not 1.3. If they only knew how this is messing with my mind...
The doctor talked with us about setting up an appointment to talk with a pediatric surgeon. That should happen sometime around week 28. She also talked about meeting with NICU staff to give us an idea of what to expect if Baby ends up there after birth.
That's about it for this week. Hopefully from here on out, this blog will get really boring, with a "still looking good" report each week. :)
Thursday, January 13, 2011
On Family
We have an amazing family. We have families that we were born into and we have a church and community family who have expressed amazing support for us as we start this journey of caring for a baby that is a mystery to us in many ways. We don't know how our journey will unfold, but we do know that we--all five of us--are so very loved. I'm going to try to say it now and then resist the temptation to reiterate it on every post I write: Thank you all for loving us and for taking care of us as we do our best to take care of Baby. It brings tears to my eyes to think of the far-away family members that I talked to on the phone yesterday who told me, "Just say the word and we be there or do what you need us to do." We have closer family (most of whom are not related by blood) who have offered to do whatever needs to be done whenever it needs to be done. We are so so so blessed by you all. Thank your for coming along side us on this journey to help and to pray. I'm a little scared, but also excited to see how God uses it. I know we will be forever changed by this little life in so many ways. I hope this build my faith. I hope it strengthens my prayer life. I hope it refines me. And I hope it does the same for you, too.
Ultrasound #2
Yesterday (Wednesday) we went in for our second Level 2 Ultrasound. We got far more information from this visit than we thought we would.
For the first time, we were able to see "the mass" and know what we were looking at. The size of it surprised us both. It takes up the better part of Baby's left side. When they told us it was "displacing the heart" at our last visit, we thought a centimeter or so. Actually, the heart is being pushed all the way into the right side of the baby's body. This was not as concerning to the doctor as it was to us. She assured us that she's seen masses this big shrink to the point where they are not a problem and don't need to be removed until the baby is around a year old. (If they don't remove them, there have been instances of this tissue turning cancerous when the baby gets to be a teenager, so even if it's not causing problems, the mass will be removed to keep it from turning into cancer.)
The doctor also told us that she is confident that the left lung is indeed there, it just can't be seen. In all likelihood, Baby will end up with one lobe of lung on the left side and a normal, three lobe lung on the right. (Most people have five lung lobes--two on the left and three on the right. We were assured he can be healthy and as athletic as he wants to be if he's missing only one lobe.)
Right now all other systems are looking good. His little heart is chugging away like a champ, and the pregnancy is completely health--Baby is getting the nutrients he needs and there are no signs of potential preterm labor.
If the mass has a CCAM component to it, that is actually good. CCAMs have a tendency to grow until 26 weeks gestation and then shrink on their own. BPS's usually stop growing at some point, but don't shrink on their own--the baby grows around it, so it is proportionately smaller, but we don't know when this might happen or how much it will help.
That was the encouraging part. The discouraging part is this: The mass has grown in the last week. I'm not exactly sure what increments we're measuring in, but last week it was at .9. This week it is at 1.23. If it gets to 1.3, we are in a danger zone for cardiac problems. Because we have come this close to the danger zone and Baby is at 23 weeks--still about three weeks from when we hope to see the mass shrink on it's own--they've given me a couple doses of steroids to try to shrink the mass.
Hopefully when we go in next Tuesday, we'll see that the steroids have done their job and we are still out of the danger zone. If we do start to see cardiac problems this early in the pregnancy, doing surgery in utero is a possibility. There are only a few places in the country that do that, so there is the potential for a trip in our near future, but we are trying not to cross that bridge until we come to it. The doctor thinks it is very unlikely that we will have to take that step.
I think that's more than enough for one post. Hopefully it makes sense, and if you're still reading this, know that I'm very impressed that you got this far. Please pray that the steroids do their job and we see the numbers level off or shrink next week. Thanks again for all your love and support.
For the first time, we were able to see "the mass" and know what we were looking at. The size of it surprised us both. It takes up the better part of Baby's left side. When they told us it was "displacing the heart" at our last visit, we thought a centimeter or so. Actually, the heart is being pushed all the way into the right side of the baby's body. This was not as concerning to the doctor as it was to us. She assured us that she's seen masses this big shrink to the point where they are not a problem and don't need to be removed until the baby is around a year old. (If they don't remove them, there have been instances of this tissue turning cancerous when the baby gets to be a teenager, so even if it's not causing problems, the mass will be removed to keep it from turning into cancer.)
The doctor also told us that she is confident that the left lung is indeed there, it just can't be seen. In all likelihood, Baby will end up with one lobe of lung on the left side and a normal, three lobe lung on the right. (Most people have five lung lobes--two on the left and three on the right. We were assured he can be healthy and as athletic as he wants to be if he's missing only one lobe.)
Right now all other systems are looking good. His little heart is chugging away like a champ, and the pregnancy is completely health--Baby is getting the nutrients he needs and there are no signs of potential preterm labor.
If the mass has a CCAM component to it, that is actually good. CCAMs have a tendency to grow until 26 weeks gestation and then shrink on their own. BPS's usually stop growing at some point, but don't shrink on their own--the baby grows around it, so it is proportionately smaller, but we don't know when this might happen or how much it will help.
That was the encouraging part. The discouraging part is this: The mass has grown in the last week. I'm not exactly sure what increments we're measuring in, but last week it was at .9. This week it is at 1.23. If it gets to 1.3, we are in a danger zone for cardiac problems. Because we have come this close to the danger zone and Baby is at 23 weeks--still about three weeks from when we hope to see the mass shrink on it's own--they've given me a couple doses of steroids to try to shrink the mass.
Hopefully when we go in next Tuesday, we'll see that the steroids have done their job and we are still out of the danger zone. If we do start to see cardiac problems this early in the pregnancy, doing surgery in utero is a possibility. There are only a few places in the country that do that, so there is the potential for a trip in our near future, but we are trying not to cross that bridge until we come to it. The doctor thinks it is very unlikely that we will have to take that step.
I think that's more than enough for one post. Hopefully it makes sense, and if you're still reading this, know that I'm very impressed that you got this far. Please pray that the steroids do their job and we see the numbers level off or shrink next week. Thanks again for all your love and support.
The Medical Terms
The mass in Baby's chest cannot be diagnosed conclusively until it is taken out and examined. The doctors have narrowed it down to two different possibilities: Bronchopulmonary Sequestration (BPS) and Congenital Cystic Adenomatoid Malformation (CCAM). BPS is the more likely diagnosis, but BPS's often have CCAM components as well, so we are likely dealing with both. Wikipedia has definitions of both these conditions, which I thought were consistent with what the doctors told us (from what my muddy brain can remember). It was nice to be able to see the facts spelled out while I was not a completely confused emotional mess.
Where to begin?
Many of you may already know the first part of our story, but I'm going to reiterate it here for those who have not seen what I initially posted on Facebook.
We went in for our routine ultrasound on Monday, January 3. We found out that we have another very active boy on the way, which we are excited about. At the ultrasound, we had no indication that something was amiss.
On the Tuesday after, I received a phone call from my midwife saying that there was something on the ultrasound that they needed to look into further, so she had scheduled me for a level 2 ultrasound for Wednesday.
Here's what we found out from the level 2 ultrasound: Baby has a mass on his left side that is either hiding his lung or it's possible that the lung hasn't developed at all and isn't there. The mass is also pushing his heart further to the right than it should be. Right now, the only thing to do is monitor the situation. We will do level 2 ultrasounds weekly from here on out to determine whether the mass is growing or shrinking and also to make sure the heart is functioning properly. For now, my visits to the midwife will continue on a normal schedule. Right now, the mass is not affecting Baby's health, but that could change if the mass grows. Also at different points we will do an echo-cardiogram and an MRI. Depending on what the mass does between now and birth and how it's affecting lungs and heart, Baby may need special care when he is born. It is almost certain that he will need to have surgery to remove the mass sooner or later. (It could shrink down to nothing on its own, but that is unlikely because the mass is larger than ones they "usually" see.)
After the appointment, I was emotional, but right now both Jeff and I feel oddly at peace with this. I'm not sure if this qualifies as a "peace that passes understanding" or just plain shock. We would appreciate your continued prayers for our little one's health. Also pray that we will do a good job parenting the two active boys we already have as we navigate the stressful territory of appointments, decisions, insurance, etc. Pray that we are able to trust Baby's health to God no matter what. Also pray that our non-Christian friends and coworkers will see Jesus through us in this situation.
We went in for our routine ultrasound on Monday, January 3. We found out that we have another very active boy on the way, which we are excited about. At the ultrasound, we had no indication that something was amiss.
On the Tuesday after, I received a phone call from my midwife saying that there was something on the ultrasound that they needed to look into further, so she had scheduled me for a level 2 ultrasound for Wednesday.
Here's what we found out from the level 2 ultrasound: Baby has a mass on his left side that is either hiding his lung or it's possible that the lung hasn't developed at all and isn't there. The mass is also pushing his heart further to the right than it should be. Right now, the only thing to do is monitor the situation. We will do level 2 ultrasounds weekly from here on out to determine whether the mass is growing or shrinking and also to make sure the heart is functioning properly. For now, my visits to the midwife will continue on a normal schedule. Right now, the mass is not affecting Baby's health, but that could change if the mass grows. Also at different points we will do an echo-cardiogram and an MRI. Depending on what the mass does between now and birth and how it's affecting lungs and heart, Baby may need special care when he is born. It is almost certain that he will need to have surgery to remove the mass sooner or later. (It could shrink down to nothing on its own, but that is unlikely because the mass is larger than ones they "usually" see.)
After the appointment, I was emotional, but right now both Jeff and I feel oddly at peace with this. I'm not sure if this qualifies as a "peace that passes understanding" or just plain shock. We would appreciate your continued prayers for our little one's health. Also pray that we will do a good job parenting the two active boys we already have as we navigate the stressful territory of appointments, decisions, insurance, etc. Pray that we are able to trust Baby's health to God no matter what. Also pray that our non-Christian friends and coworkers will see Jesus through us in this situation.
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