Hi all,
We had two appointments in the last two days which gave us some good news. It's about time!
Yesterday, we met with a pediatric neurosurgeon to get some more information on what kind of procedure would need to be done for our little guy. He discussed the shunt placement and what to expect in terms of risks and long-term maintenance. (A shunt will drain the fluid that's built up on the brain, routing it into the abdomen where the body reabsorbs it.) He has placed several hundred, even thousands of shunts on all sorts of kids, so we're in good hands. The shunt will be placed 1-2 days after birth, assuming everything else is A-OK with baby. Amazingly, the shunt he places at birth will be the one he grows up with, even until he's an adult! He also recommends a C-section to minimize the risks to the brain when passing through the birth canal.
Today, we met with our OB who reviewed the neurosurgeon's report. With a C-section confirmed, we proceeded to schedule our baby's birthday! May 10th is the big day when Baby Lambert will arrive.
We left these appointments a bit in awe. We finally have something definite, rather than all the unknowns of the past several months. While we won't know the extent of developmental delay until he starts growing up, at least we know that the right people are on our team to do the best for our baby. And we now have a deadline to get everything ready in the nursery!
More details to come as we learn more about C-sections, birthing classes, and parenting. Our next ultrasound is next week for another check up.
Stay tuned and stay in prayer. Thanks for your support and caring!
Tuesday, March 9, 2010
Tuesday, February 16, 2010
Another ultrasound
We had another ultrasound today. I've had so many now that I've lost count. It's been 3 weeks since the last reading and I am at 27 weeks gestation now. He weighed in a 2 lbs, 12 oz today.
So...No miraculous news to report. The ventricles in the brain are still measuring much larger than a normal baby. For comparison, his head circumference and diameter are measuring between 30 and 32 weeks, compared to the rest of his body which is growing just fine at 27 weeks. So his head is in the 90th percentile, compared to everything else which is just average.
A different perinatologist (fetal doctor) talked to us today and she was at least helpful in explaining what we're looking at. She was also more hopeful than the others, noting that the size of his head is about stable (in relation to his body) compared to last time. So while the hydrocephalus hasn't decreased or resolved, at least it doesn't seem to have grown exponentially in the last 3 weeks. She recommended another ultrasound in 4 weeks, since at this point more information won't really change the plan very much. But then after that, it will likely be every 2 weeks, then weekly as delivery gets closer.
She also mentioned it will be time to start thinking about a birth plan, which again, will likely include C-section as a strong possibility. We meet with the OB ARNP next week and will start asking those questions. We also signed up for birthing classes, although they don't start until April 1st.
The doctor also reiterated that we really won't know about any kind of developmental issues until he is born. That's really the worst part of all of this. But I reminded myself that, even if he was a healthy, normal baby, parents always worry and wonder about what their child will be like. We just have some added concerns.
Next on the horizon is the regular OB appointment (also moving to every 2 weeks after this), then the meeting with the pediatric neurosurgeon on March 8th. We'll be writing down questions for him in the next couple of weeks so we can be prepared. I get the impression that it's not often that he counsels unborn patients.
We will try to focus on the positive: the rest of his body is growing strong and at a normal pace. His heart is beating well. He's continuing to kick and move around. We have friends planning baby showers.
That's a long post for not really much news. The wait continues and at times, it feels like the next 3 months will be the longest. Please continue to pray with us during these next few weeks and months.
Thank you for your love and support!
So...No miraculous news to report. The ventricles in the brain are still measuring much larger than a normal baby. For comparison, his head circumference and diameter are measuring between 30 and 32 weeks, compared to the rest of his body which is growing just fine at 27 weeks. So his head is in the 90th percentile, compared to everything else which is just average.
A different perinatologist (fetal doctor) talked to us today and she was at least helpful in explaining what we're looking at. She was also more hopeful than the others, noting that the size of his head is about stable (in relation to his body) compared to last time. So while the hydrocephalus hasn't decreased or resolved, at least it doesn't seem to have grown exponentially in the last 3 weeks. She recommended another ultrasound in 4 weeks, since at this point more information won't really change the plan very much. But then after that, it will likely be every 2 weeks, then weekly as delivery gets closer.
She also mentioned it will be time to start thinking about a birth plan, which again, will likely include C-section as a strong possibility. We meet with the OB ARNP next week and will start asking those questions. We also signed up for birthing classes, although they don't start until April 1st.
The doctor also reiterated that we really won't know about any kind of developmental issues until he is born. That's really the worst part of all of this. But I reminded myself that, even if he was a healthy, normal baby, parents always worry and wonder about what their child will be like. We just have some added concerns.
Next on the horizon is the regular OB appointment (also moving to every 2 weeks after this), then the meeting with the pediatric neurosurgeon on March 8th. We'll be writing down questions for him in the next couple of weeks so we can be prepared. I get the impression that it's not often that he counsels unborn patients.
We will try to focus on the positive: the rest of his body is growing strong and at a normal pace. His heart is beating well. He's continuing to kick and move around. We have friends planning baby showers.
That's a long post for not really much news. The wait continues and at times, it feels like the next 3 months will be the longest. Please continue to pray with us during these next few weeks and months.
Thank you for your love and support!
Wednesday, February 10, 2010
Still waiting...
Several of you have asked how things are going and if there's any new news. Well, nothing new to report as of yet. Our next ultrasound is Tuesday 2/16, so we'll see how things are going then. You can be praying for an optimistic outcome then.
We also made a consult appointment with a pediatric neurosurgeon, who we'll see in March. We just want to know what kind of procedures we're looking at, if there's anything else we can do before he's born, and a bit more of what to expect when he's born. Like will he be whisked away to surgery immediately after birth? Or can we wait a few days? Will he have to stay in the NICU? All of these are possibilities and we may not know any of it until it actually happens. But we feel like the more prepared we can be, the better.
We continue to work on getting things ready for the baby's room, slowly but surely. I'm excited to be working with some friends who are hosting baby showers for us too. It really helps to focus on the normal stuff in getting ready for a baby. He is also definitely rounding out Annie's figure and providing constant reminders of his presence in flutters and jabs, which Matt can even feel in the middle of the night sometimes. That part is fun.
We promise to post more news after the ultrasound next week. As always, we appreciate your prayers and support through all of this. We couldn't do it without you!
We also made a consult appointment with a pediatric neurosurgeon, who we'll see in March. We just want to know what kind of procedures we're looking at, if there's anything else we can do before he's born, and a bit more of what to expect when he's born. Like will he be whisked away to surgery immediately after birth? Or can we wait a few days? Will he have to stay in the NICU? All of these are possibilities and we may not know any of it until it actually happens. But we feel like the more prepared we can be, the better.
We continue to work on getting things ready for the baby's room, slowly but surely. I'm excited to be working with some friends who are hosting baby showers for us too. It really helps to focus on the normal stuff in getting ready for a baby. He is also definitely rounding out Annie's figure and providing constant reminders of his presence in flutters and jabs, which Matt can even feel in the middle of the night sometimes. That part is fun.
We promise to post more news after the ultrasound next week. As always, we appreciate your prayers and support through all of this. We couldn't do it without you!
Monday, January 25, 2010
Ultrasound Update #2
The last 3 weeks have flown by as we dove back into daily life and planning after the holidays. We even got to go on short cruise to Mexico and spend some much needed relaxation time together.
We had another ultrasound today to measure his head size and the growth of the ventricles. Unfortunately, the ventricles keep growing, so the hydrocephalus has not resolved. They are actually 2x or more than the size they should be. :( Another way of putting it: I am 24 weeks pregnant, but his head his measuring like that of a 26-27 week old.
So we are not out of the woods yet. We'll have another ultrasound in 3 weeks and continue to keep an eye on him. The real risk at this point is that the the growing ventricles could get in the way of the normal brain tissues surrounding them. Fortunately, everything else is growing strong and he is kicking like crazy. Also, if his head gets too big, I could need to have a c-section too.
Our worries have gone by the wayside, for the most part (that's another answer to prayer!) however today's news brings us back to the reality of what this little boy could grow up to be.
We remain in prayer for resolution of this issue and continue to trust God for his wisdom and plan. Thank you for all of your encouragement and prayer over the last several weeks. We've still got about 4 months to go, so don't stop now! We deeply appreciate you!
We had another ultrasound today to measure his head size and the growth of the ventricles. Unfortunately, the ventricles keep growing, so the hydrocephalus has not resolved. They are actually 2x or more than the size they should be. :( Another way of putting it: I am 24 weeks pregnant, but his head his measuring like that of a 26-27 week old.
So we are not out of the woods yet. We'll have another ultrasound in 3 weeks and continue to keep an eye on him. The real risk at this point is that the the growing ventricles could get in the way of the normal brain tissues surrounding them. Fortunately, everything else is growing strong and he is kicking like crazy. Also, if his head gets too big, I could need to have a c-section too.
Our worries have gone by the wayside, for the most part (that's another answer to prayer!) however today's news brings us back to the reality of what this little boy could grow up to be.
We remain in prayer for resolution of this issue and continue to trust God for his wisdom and plan. Thank you for all of your encouragement and prayer over the last several weeks. We've still got about 4 months to go, so don't stop now! We deeply appreciate you!
Tuesday, January 5, 2010
Good News!
We got the full results of the amniocentesis today (well, as much as can be left on a voicemail). The great news is that they found no abnormal genetic markers and no infectious causes! That's pretty much the best news yet!
There is still the possibility of a rare genetically linked cause, but they don't test for that routinely. We may opt to have that done (if our insurance company approves it). But even if that test was positive, then 50% of the babies do just fine and the other 50% have pretty severe issues. We won't know any of that until he's born anyway. It would also tell us if I was a carrier, which could put future baby boys at risk.
Anyway, praise God for answered prayers so far! We'll continue to pray for the hydrocephalus to resolve on it's own, or at least stay the same.
Amen!
There is still the possibility of a rare genetically linked cause, but they don't test for that routinely. We may opt to have that done (if our insurance company approves it). But even if that test was positive, then 50% of the babies do just fine and the other 50% have pretty severe issues. We won't know any of that until he's born anyway. It would also tell us if I was a carrier, which could put future baby boys at risk.
Anyway, praise God for answered prayers so far! We'll continue to pray for the hydrocephalus to resolve on it's own, or at least stay the same.
Amen!
Monday, January 4, 2010
Ultrasound Update
We had a follow-up ultrasound today, 2 weeks after the diagnosis. Not much new news to post, but here's what we know now:
- Weight up to 15 ounces (gained 5 ounces in 2 weeks!), which is in the 59th percentile.
- The ventricles (where the fluid collects in the brain) are just slightly larger today.
- Preliminary genetic screen from the amniocentesis shows no down syndrome or trisomy 13 or 18 (fatal defects).
So he is growing quickly and is strong otherwise. And we are thankful that the initial genetic screen is negative.
The next ultrasound is in 3 weeks, but we hope to get the full amniocentesis report in the next week or so.
The initial shock and worry has subsided and day to day life goes on (Matt on the ski slopes and Annie back at work). As we speak, Matt is laughing hysterically while leading the cats around with a laser pointer. Any kind of distraction is a good one at this point. Look out Phoebe and Jack!
We've begun planning the nursery and will soon be registering for all the other baby paraphenalia we'll be needing in a few short months.
In the downtime and until we find out more, we will continue to pray. We are so thankful for your support in prayer and encouraging words by email and phone calls. Please continue to join us in prayer for our son's health and growth, for the hydrocephalus to resolve, and for us as we face the waiting and the unknown. And praise God for Annie's health after the amniocentesis and for a negative initial genetic screen!
We'll post more info as we have it!
Love, Annie & Matt
History
Hello friends and family!
We're going to try this for updates on our pre-natal life and our son's progress. For those of you just joining our story, here's a little background:
Our baby BOY is due in mid-May! That means we are almost half way through the pregnancy.
On our last ultrasound (where HE announced himself) Dec. 21st, we also found out he has a condition called hydrocephalus, which means too much fluid building up in the brain. There are many causes of this condition which occurs in about 1 in 2000 births and is more common in boys than girls. The spectrum of outcomes is anything from absolutely normal development to, well, severe mental retardation or death. Very scary...
Next steps:
We're going to try this for updates on our pre-natal life and our son's progress. For those of you just joining our story, here's a little background:
Our baby BOY is due in mid-May! That means we are almost half way through the pregnancy.
On our last ultrasound (where HE announced himself) Dec. 21st, we also found out he has a condition called hydrocephalus, which means too much fluid building up in the brain. There are many causes of this condition which occurs in about 1 in 2000 births and is more common in boys than girls. The spectrum of outcomes is anything from absolutely normal development to, well, severe mental retardation or death. Very scary...
Next steps:
- Amniocentesis to try to determine the cause (genetic or infection). This was done on Dec. 28th and the results will take 1-2 weeks to get back.
- Monitor with ultrasound every 2-3 weeks until delivery.
Really all we can do at this point is pray for the best outcome--that this issue will resolve on its own and that our baby will be completely healthy. For those of you who are inclined to pray, please pray for us:
- for the best outcome--no genetic defects and for the hydrocephalus to resolve
- patience and peace during the waiting time
- trust in God's plan and timing
- to grow in love for our baby boy, no matter what the outcome
Thank you for standing with use in prayer and for your support!
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