9/25/2007 - Check-Up with Dr Kennedy
Six months ago Dr Kennedy saw Jesse and delaired him fit as a fiddle, and scheduled a 6-month check-up. Today was just that day. Stopping just shy of an MRI, she confirmed what most have speculated, that there appears to be absolutely no developmental issues whatsoever. With a few extra questions about what to look for, just in case, she sent us on our way. Jesse is one healthy, happy, and smart kiddo.
As always, I'm terribly sorry about getting the word out. I'm in dire need of a full-life content management system. It's not just a rumor about kids keeping you busy, but as the web is a big part of my world, I'm certainly trying to find better ways to get the information out to those who wish to be in-the-know! Thanks again for stopping by. I look forward to the day, looking at God's big video recorder in the sky, seeing all the wonderful people who stopped by and prayed, hoped, blessed, cried, and rejoiced with us as we started this journey. God bless you all, and I hope to be in touch in the future!
4/7/2007 - Parentally Un-Excused
With the greatest of apologies for its delay, the following post is pre-dated to it's correct date, although not posted until today.
3/2/2007 - Meeting Dr Kennedy
Today we went to see Dr Gail Kennedy, a pediatric neurologist. After much physical examining Dr Kennedy determined that Jesse is a healthy baby boy, to the extent that her opinion was that additional testing and CAT-scanning were unnecessary at this time! Jesse's actions, reactions, and physical dimensions are wholly appropriate for his age, and many of the things he likes to do on a daily basis are ahead of the average learning curve! To Ben's great satisfaction she went on for a bit about what she'd be expecting to see of a child with a severe malformation. She asked that we return in 6 months for a checkup. If nothing else that made us feel that she had listened and recognized out concerns that one good test doesn't mean our worries were over. So we'll see Dr Kennedy again in the Fall, but expect to find that he is doing just exactly what he should be doing. Now, having gotten past the very worst of late winter colds, we can begin to see the great joy in a healthy child, and our praises of God will be eternally endless.
As another note, our boy was baptized on February 25th. Jesse David Kaap, clothed in white, and inconceivably sinless. Another in a string of blessedly wonderful days of late.
And to you all: Thanks for sticking with us. That you're reading this means you've kept us in your minds, in your prayers. It's something we fully recognize as a blessing of such proportion that we cannot begin to repay. The hope, the faith, the calm that was shared with us throughout Jesse's life has been the very best of what makes the world go 'round. Our greatest hope is to pass this along to our children, especially our eldest son, so he can become a man among men, recognizing that through the love of Christ and faith in God, the potential good one can add to this world is infinite. Thank you all, so very much. You will be in our prayers until the end of time, a promise that before I had a child of my own I wouldn't have know how to be so certain of being able to keep. Every day, when our boy smiles at us, we are thankful for Grace, we are thankful for God's love of his children, and we are thankful for all of you!
2/20/2007 - Man does the time fly
Already closing in on 8 weeks old! Jesse's become quite the little chubber. In a good way, of course. I'm trying to keep the photos up to date, but we've been quite busy lately. Work here, courses here, a little recreation now and then, oh, and Jesse all the time! It's a great life, but quite busy. Jesse seems to be on the up side of his second bout with cold season. Using the little brain-sucker-bulb has got to be the most unpleasant thing we've experienced having to do to our baby boy. Now, with the baptism finally coming up, we've got a few extra things to plan, but the added Holy Spirit in the house is gonna be great! So, where applicable, enjoy the oddly-warm weather this week, and keep those prayers comin'!
1/19/2007 - Three weeks & updated web address
All is well with Mom & Baby. We've passed through our first growth spurt, and Jesse's up to 9lbs 5.5ozs.
Among the many on-goings of life, Ben crashed Jesse's webpage. It's now back, but only for a little while. Well, the page will continue to work, but for those using http://baby.kaapfamily.net/, please update your links to http://kaapfamily.net/jesse/ to keep in touch. Thanks!
1/9/2007 16:19 - Nearing two weeks
As Jesse nears two weeks old, I've been reminded by a very old friend that I've been failing to post new pictures. I have been trying, in my copious spare time, to set up a good way to share pictures. Editing this website just for pictures is somewhat tedious, and actually caught up in some site design hassle that I've brought upon myself. So here's a link to where I'm putting them for now. It should work, but if you can't see any photos, let me know and I'll see if I can find a better idea.
On a people-news update, everyone is doing fine. Jesse is quietly observant, except when he's hungry. You can see that he wants to learn stuff, he just isn't able for another week or so. He does well at night, mostly because we keep him up a lot in the evening. We've gone on a few shopping trips, and had him out of the house to visit some friends a few times, and everything seems to go well. Next week Ben will return to work, so we'll see how that goes. Things will get done a bit more slowly, but they'll be done, and we'll find our pace again some day. So have a great evening, check out the new photos, and we'll keep you posted as stuff continues to happen.
1/1/2007 12:18 - Daily-ish update
I don't think I'll be able to do daily updates for his whole life, but I'll try to keep info coming for those who have enjoyed following along. First of all, Happy New Year! Hopefully everyone's 2007 will be as filled with joy as our 2006 was! Jesse is back home with us (as of Friday evening) and doing well. He hadn't been eating too often for a while, but as of last night he seems to be doing better. There just isn't enough data to rely on quite yet, but as long as the diapers keep needing to be changed, we know he's doing well. He'll go back to the doctor's office on Tuesday to re-check his weight, to make sure he's on the way up. He seems long as he stretches out, but even the newborn clothes are HUGE on him. Occasionally he finds his mouth with his thumb, but only when the sleeves aren't in the way. Still as quite as he can be, we only hear from him when he gets cold or needs food. We couldn't have asked for a sweeter little bundle.
We also have an update from the doctors. The evening after Jesse was born he went to the nursery for a cranial sonogram, among other post-delivery checks. We had not heard anything that evening, so we asked our nurse to see if she could find anything out. Later in the evening she let us know that the nurse's notes said they came out OK. We had more questions, but she didn't have any more information. The next morning a doctor came in to tell us the results and said that the sonogram didn't turn up anything wrong. We asked a few detailed questions, but she wasn't a specialist, so there wasn't much more that she could tell us. It seemed that they were looking to see IF he showed any Dandy-Walker, opposed to seeing if he NO LONGER showed any symptoms. We went home that evening, and back to the doctor the next morning, who told us what the doctor told us the day before. When we asked her for details she brought up exactly what she was sent from the sonogram technician. The short version is that there was no apparent dilation of the fourth ventricle and that the cerebellar connection was in tact.
She asked if we had any other questions, but we were just too excited about what she had said to really pay attention. We're a bit apprehensive about being too excited, and we'll probably seek a specialist for an 'extra' opinion, to make sure it's someone who's looking knowing what we had before instead of just checking that he's OK, but the bottom line is that if they didn't see anything, then there have been definite improvements, and his chances to lead a blessed normal life are spectacular. The actual story on how we decided on the name Jesse is still to come, but I'll tell you this: People have been saying that you can wait until he's born to pick, and it will seem apparent. It has become apparent. There can be no question, in all that has happened, that the Lord exists, the meaning of the name Jesse. His name was chosen with great love, and affirmed by such great blessing.
God bless you all, thank you for the prayers, they continue to mean the world to us.
12/28/2006 03:53 - Jesse David Kaap is born!!!
After 21.5 hours of labor, Jesse arrived just before 4AM Thursday. I haven't had enough sleep to write with much wit, but he weighed 7lbs 10ozs (Mom/Grandma/TA nailed it), at a decent 21.25 inches. Thank you all and God bless you for all your prayers, hopes, wishes, kind words, and "interesting" observations. All tests are coming back as OK, but there are several more to go, including the head sono and possibly the MRI. We'll keep news posted here. If you're in the know about such things, 1min apgar 8, 5min apgar 9, and nobody disagrees that he's a spitting image of his father and grandfather.
12/27/2006 01:19 - Last appt & non-stress test
Oops. I didn't forget, just had a late night out. Still no news. All the doctors say he's doing great, he just may be too comfortable inside to want to come out! Telling that one to Liza will put you on the bad list though... Names list updated, and the sonogram pictures are up as of this afternoon...
12/12/2006 - His Godparents
Our baby has two wonderful godparents. Thank you to Tony Kaap and Mary Burlace to honoring us and accepting the monumental task of guiding our boy's spiritual development and helping us guide him along the narrow path.
11/27/2006 - Dr Wagoner, sonogram
This is the last set of sonogram images, so enjoy! Here's the details as I understand them. Our boy is 6lbs 4oz. The 4th ventricle was visible, but less so than our last doctor's visit. There's still a large amount of amniotic fluid, but less than our last visit. By best estimates, his head is a little large (by about 1 week's worth), and his body is on the small side. Not enough to be alarmed about, so it's a happy day. Enjoy the photos as we all sit around anticipating our upcoming event.
The second photo is him yawning. It's easy to figure out if you look at the third image first.
11/13/2006 - No appt, just an update
Just in case you wanted to view it, I have the "first sonogram video" finally down to a reasonable size (download here). It's still a good 13.5 MB, so be aware it may take a bit to download. Otherwise, enjoy, thanks for checking in. The next (and final) sonogram will be 27th.
10/31/2006 - Dr Kehl, Carle L2 sonogram
So, in order to pass the news expediently, here's the new pictures... Actual update information follows.
Happy Halloween to all! Today's news is not as exciting as it has been in the past few updates. The short of it is that the fourth ventricle appears dilated again. Not as severely as it had in the beginning, but to a noticeable size. Thankfully, the past shrinkage has allowed for a great amount of brain development. There is still some underdevelopment of the cerebellar vermis, but that problem has not worsened. Apparently it is common for Dandy-Walker symptoms to fluctuate and we'll just have to wait for the tests after he's born to tell what level of severity we might be dealing with. As always, he may be just fine with no noticeable deviations from normal development, or he may have some delayed or underdeveloped physical abilities or coordination.
Here's the part where we get into new stuff. On top of the continuing issues as added an over-abundance of amniotic fluid. While the diagnosis was not severe, we'll be on the watch for premature labor symptoms. Also, due to the relatively larger amount of space, our boy may choose to flip around (he's been in a wonderfully head-down position for several weeks) before his grand entrance creating complications that we'd just as soon prefer not to deal with.
As you know, we wouldn't mention these things if we didn't know, on a super-conscious level, that we were kept so highly in so many prayers. That so many have responded so generously in heartfelt prayer and sympathy has made such a difference to all three of us. I never feel like we can thank you each and all enough, but we won't stop trying. Thank you for all you've done, thank you for what you continue to do, and God bless you all.
For those who have grown accustom to good news, here's what I have: The baby's heart is in great shape. Higher heart rate earlier this week was attributable to fetal movement, which is a great sign of excellent circulatory health. His bones are in great shape. He moves, with what seems like constant regularity, or just plain constantly if you're the one carrying him and trying to sleep! And the strongest debate in our house is whether Liza is going to let me carry him home from the hospital because I don't want to set him down in a car seat for at least a week after he's born!!! Smile, it's a baby, and he'll be loved to the full extent of the capacity of his parents, grandparents, great-grandparents, and oh so many others. And for those of you keeping track, after long-hard weekend, Riley, Ryan, Samson, Sean, Simeon, Spiro, Tearlach, Thaddeus, Tobias, and Topper have been added to the names list.
9/28/2006 - Glucose tolerance testing
Good news today. After a laborious (pun-intended) 3-hour starvation test, Liza passed with flying colors. Apparently the low blood sugar was a temporary thing and not brought on by any system failure. As some may note, I didn't post about this earlier. It certainly wasn't thought to be less important or less note-worthy, but I was optimistically confident that it would turn out the way it did, and didn't want to worry anyone who might have been moved to check up on us this week.
Reflecting on this pregnancy as a whole, it's interesting to gain such perspective as to how complex the workings of human reproduction actually are. Before this year, it was obvious to me how often children were born, and how completely happy an experience it almost always was. Sometimes, there was occasion for sadness, and that seemed completely disheartening. From where we are today, I can tell you, I was 100% right, and 100% wrong. It's nearly impossible to describe how two such polar emotions can co-exist. Not depressing, and not angering but there's a realization about how much more difficult life might be which somehow doesn't detract one bit from the excited feeling we've had for about 7 months now. At every turn there seems to be something that might be going wrong, making life that much harder, and at every turn we've had someone who lets us know that they will help with any burden. The bottom line is, unmistakably, "we'll get by with a little help from our friends." And looking back on these occasions, I recall an experience someone once shared with me, one that went a long way to solidifying my faith, that while they were quietly praying, they "heard a voice in their head that was not their own." Well for us, it's clear in being able to pass so easily through what sometimes feels like a valley of challenges, that we've "felt a strength in us that is not our own." And we'd like to thank each one of you who stops by, who thinks of us, who prays for us, because it is strength given to us by you. Since I'm apparently in a mood to spin quotes today, I'll do one more, the original being "I know you're out there, I can hear you breathing," and our spin being "We know you're out there, we can feel you caring." God bless.
9/25/2006 - Dr Wagoner, lab work
Because you know how much we love excitement, today Liza came back with test results indicating a possibility of Gestational Diabetes. More tests will be run later this week to check. Apparently her blood sugar was high for a normal checkup, indicating that her system may not be absorbing the quantities of sugar that it should. Under control this is not life threatening, but it's certainly something we'd rather rule out as the statistics for repetition in subsequent pregnancies is rather high.
9/22/2006 - Dr Kehl, Carle L2 sonogram
The Third Trimester has begun with continuing good news. The bottom line is that, in Dr Kehl's opinion, someone looking at the sonogram without knowledge of what we've been dealing with, would most likely not identify the abnormalities. Personally, having missed out on the head examination in the previous sonogram visit, I was extremely excited as the sonogram showed our boy's head all full of brains and stuff! I know that sounds odd, but it was such a relief. I waited for the part where it looked like it did before, but it never did, no matter how she scanned back and forth! What a glorious delight!
If you think you're off the hook now, forget about it! An excellent parallel was pointed out to me in Exodus 17:9-14. It's a quick read, but a very important point. Just because things are looking up, don't back off. And don't doubt for a second that your prayers and faith isn't working here, or has gone un-noticed. It has been so wonderful knowing the support we have been receiving, and how blessed we are to have the veritable army of faithful behind us that you compose. From our baby boy's increasing health to our continued sanity, it is recognized as a huge part of our every single day. We could never thank everyone enough for the strength we've received and rest assured that you are all in our prayers as well.
OK, now what you've been waiting for, weighing in at 2lbs. 5oz....
8/24/2006 - Dr Kehl, Carle L2 sonogram
Just past mid-term now, and we went back to the high-risk OB. While the tech took quite a long time to get good scans of the heart, everything looked great, as always, in that department. We must give the tech her due credit, she was trying to get audio graphs of our very active baby boy...
After waiting patiently (no put intended) the Doc arrived post dual c-sections at the adjoining hospital. The news is good today. You want small miracles, keep on praying. They're paying off! I'm quite bad at the names for things, so I'll use Liza's description to share the details:
What WAS wrong the last time was that the ventricles in the brain were all almost twice as large as they should have been (dilated) mostly the fourth (the one in back). Also there was no vermis (the part that connects the two halves of the brain) back in the cerebellum. Also his brain mass was very low, his brain was too small.
NOW, however, the ventricles in his brain are back to a normal/average size. There is now also a partial vermis connecting the halves of the cerebellum (partial not whole). His brain is also now a normal size. This means we are probably dealing with a Dandy-Walker variant instead of the full malformation, much less severe.
So thank you so much for all the wishes and prayers, and keep them coming as we still have several months of development to go!
8/3/2006 - Dr Bowman, Children's Memorial
A trip to "the big city" brings more light to what we're looking at. While a second first opinion was recommended, we also learned a few things that 10 minutes on WebMD didn't tell us. First of all, despite a positive test for Down Syndrome (which is known to give false-positives) we found out that Down Syndrome and true Dandy-Walker are mutually exclusive. Hopefully we'll be able to clear one of those off our minds soon. Secondly, it was pointed out that the range of effects of Dandy-Walker vary greatly (which we knew) and in the majority of cases the symptoms are more mild than severe. Perhaps the Doc was being comforting, but we're choosing to run with it for a while.
7/26/2006 - High-Res (Level-2) Sonogram
At the behest of our doctor, a specialist took a look at some trouble areas found in the regular sonogram. What was found is called a Dandy-Walker Malformation. This means that the fluid in the back of our boy's head isn't draining properly, causing increased pressure in the head, and not allowing the brain to develop. This malformation has many causes, and blood work is being done to find out what exactly the problem is. The vast majority of what could be causing the problem isn't treatable until after the baby's birth, and the odds run about 70% that the child will be mentally retarded.
Please pray with us, for our baby boy's health, and for our strength of faith, and the wisdom to recognize what a blessing it is that this baby was given to us, and not to a family who values life less...
7/25/2006 - Sonogram
Our Baby's first photos. No explanation needed, here they are:
That's right, we're having a baby boy! How exciting! 9oz, about the weight of a Big Mac. (Yes, Ben was hungry at the time, although Liza was the one to go out and get a Big Mac afterwards...)
5/22/2006 - Initial Doc Visit
After some searching, the baby's heartbeat was not to be found, so off to the sonogram we went. Sorry to say, we were WAY to excited to think about asking the nurse to print it out. But there was the baby, lying so contently. Kicking his/her feet just a little. At just under an inch, and with a heart rate of ~170bpm, happy and healthy at about 9.8 weeks. Or 10.2 weeks, depending on who was in the room at the time... :)