Jade was born at 9:23 am on 5/24/2001 weighing 6 lbs 7 oz, and was 17.6 inches long.
An MRI was done that same day, and showed the sack (which did partially rupture when she was born) to be an encephalocele.
Surgery was performed to remove the sack at 2:00 pm on 5/25/2001. The neurosurgeon reported "no significant brain matter" within the sack at that time. The area of her brain that would be affected is her cerebellum, which controls balance and coordination. He also said that we really wouldn't know until she is at least 6-8 months old how she might be affected. So we will watch and see how she meets the various baby milestones.
It was found via ultrasounds performed after the surgery that the swollen ventricles have continued to accumulate fluid (hydrocephalus), and she therefore needed a shunt inserted into her brain to divert the excess fluid from her brain down into her abdominal cavity, where it can be safely reabsorbed into her body. This surgery was done on 5/30/2001 at 1:30 pm, and was sucessful.
For a baby who has just undergone two surgeries, Jade is doing quite well, is eating vigorously (she has already regained her birth weight), and appears to our eyes to be a perfectly normal newborn baby girl. When there is time, this site will be updated in a more comprehensive manner.
Jade came home Saturday afternoon (6/1/01). Now for the bad news - the neurologist informed us that Jade is missing a 'significant' part of her cerebellum. I am most definitely going to have to figure out what doctors mean by significant - it is the second time it was used, and this time I am not liking it. This increases her risk for a whole variety of neurological problems, but doesn't preclude her being an essentially normal little girl, either. Which means we get to continue to play the watch-wait-and-see game, probably for a very long time.
Just for informational purposes: the cerebellum is the center of the brain that is responsible for coordination and balance, so these are the functions that are most likely to be affected. The neurologist said that Jade appears to have normal reflexes and muscle tone for a newborn.
Jade had an ultrasound and appointment with the neurosurgeon on 6/28/01 to check how her shunt is functioning, along with how she is doing in general. The ultrasounds looked good, with the ventricle that has the shunt in it almost completely gone, and the other one normal-sized.
I also asked about the MRI results, and afer rechecking the report at the hospital and getting back to me, he confirmed what the neurologist had said, in that she is missing a large part of her cerebellum.
We went to the neurologist today. She said that Jade is doing amazingly well, and that as pessimistic as she had felt at Jade's birth, she has begun to feel quite optimistic that she will do much better than she had expected.
She noted that Jade's right eye has a slight tendency to turn in (I had picked up on that) and that she tends to hold her hands in fists when she is at rest (that is a newborn tendency, and is supposed to go away as babies grow). However, she is quite able to open up her hands, so she saw no reason to be overly concerned right now, and just to keep an eye on it. She had no real comment on how wobbly her head is, and said that is still fairly common in babies Jade's age.
Jade went to the pediatrician today. She now weighs 6.2 kg (13 lb 11 oz) and is 59.5 cm (23.5 in) long. Growing fast! The Dr. said she is doing very well, and seemed very pleased with how she is doing. She also expressed concern about Jade's wobbly head, saying that most babies have managed to hold their heads steady by now, although not all. However, the rest of her developmental milestones are as they should be.
Jade received her normal immunizations for this month, receiving four shots (poor kid!).
Jade seems to be hitting most of the baby milestones on the long side of on time, but still on time. She didn't start smiling until she was nearly two months old, but started laughing when she was around 3 1/2 months. As it was with Katie, laughter was quite sporadic at first, but by the end of the month rarely a day went by without her giggling at something I did.
She started sleeping through the night in August, sometimes going as long as eight hours at a time. She is actively trying to sit, although having absolutely no success. She pushes up on her legs to 'stand,' and does what one developmental book calls 'airplaning,' where they arch their backs, and get arms, legs, and their head off the ground to look straight ahead. She tracks objects well, and will turn towards a sound. She loves to make spit bubbles, making raspberry noises along with it. I have yet to hear cooing, but she will look straight at me and make all kinds of aaaaa noises at me.
The only major concern I have at this point is that she has wobbly head control, which is worse when she is tired. In my opinion, it seems different than when she was just learning to hold up her head. Only time will tell, however.
Jade's only medical evalutaion for this month was at the Children's Developmental Clinic. Their report was very comprehensive--I'll not even try to paraphrase it. At the clinic, she received thumbsplints to help her hold her thumb out of her palm, to assist in grabbing onto objects. Pictures below--click to see larger images.
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Jade has started to work very hard at rolling over! She can roll up and onto her side now, of course only when she wants to. She is batting at toys, and if they stay next to her hands long enough, she has started to grab them. However, she immediatly loses interest in them once she has them, so I suppose the challenge for now is in the grasping, not the having. The next step, of course, will be to start putting everything into her mouth. She is getting closer to sitting, and has started to push up on her elbows when she is laying on her tummy. She is rolling over by the end of the month.
Well, we went on Vacation back to visit our parents for Thanksgiving, so these months are jumbled together in my head a bit. I'll try and keep them seperate. Jade started sitting independantly without support while on our vacation. Her head wobble, still present at the start of vacation, was noticably better by the time we flew home (Dec. 4). She began rolling over the other way towards the end of the trip as well. Initially, she didn't react well to all those strangers (well, my family is strange!), and would pout and cry any time someone new picked her up, but rapidly discovered this was futile. She was accepting new faces tolerably well by the time we went to visit Terry's parents. She started to eat a bit of baby food, and small pieces of bread, while we were visiting.
Terry took Jade to her six-month check-up when we returned, where she weighed 15 lbs 4 oz. She received her immunizations, which she tolerated well. Missing the Prevnar, as they were out. Still need to get her back to get that.
Once we were home, Jade's head wobble continued to disappear rapidly. By mid-December, it was almost completely gone. I only see it when she gets startled, surprised, or excited. Briefly, while she was first deliberately learning to reach for things, I noticed that her arms would wobble/shake as she was concentrating on reaching for things, but this has almost completely disappeared as well. She is sitting very well, for long periods of time (over 5 minutes), but will still topple over. However, she has started to put her arms out to catch herself now (perhaps 25-50% of the time). She is starting to try and draw her legs up underneath her body on her tummy. She has stopped rolling over, but I believe this is voluntary, as she can still do it if she chooses to. If she is put on her hands and knees, she will rock back and forth. Laying on her back, she often plays with her feet, pulling them up to look at them. She is definately interested in her toys now, picking them up and chewing on them. She is actively reaching for toys, leaning over from a sitting position and getting back up with toy in fist. She still holds her thumb in her plam, but not nearly as tightly. She is eating baby food nearly daily, and can eat 2 oz. at a sitting, if she so chooses.
Went to the family doctor this month. Jade is 17 lb 4 oz, and is 28 inches long. She finally received her Prevnar shot. The doctor is impressed with Jade's progress to date, and says that she appears pretty normal to her. I didn't bother to point out the details this time (her thumbs still tuck in and her hands spend an awful lot of their time in fists still), but Jade is still plugging away and managing to reach (just barely) those baby milestones on time.
Jade has just begun to figure out that small objects can be put into big buckets. The first few times I put the little blocks into the bucket, and then showed her where they went, she tried cramming her head all the way into the bucket to check them out! As it didn't quite fit, she contented herself with staring at them with her head resting on the rim... She is continuing to enjoy the world of paper. Don't try to read around her! She dives after books and magazine pages now, trying to crinkle them up and shove them into her mouth. Those magazine subscription cards that up until now have merely been an annoyance, have become an additional source of fiber in Jade's diet.
It has been a while since I've updated this! Not sure why, there really hasn't been any bad news. Jade is doing very well. She is crawling now (she started doing that around Easter sometime), pulling up on things with a passion, although she hasn't connected that legs are for walking. She will pull up on something, see something she wants about a foot away, sit down, crawl over, and stand up rather than attempting to walk along the furniture.
She moves easily from her tummy to sitting and back, rolls both ways now, and her hands spend more time open. However, she still needs the thumb splints, even though she can move her thumb how she wants. Her physical therapist says that it will help to keep her thumb from 'freezing' in the tucked-in position, so that she doesn't have a reduction in range of motion when she is older.
I still have yet to recognize that she is talking, but she is starting to understand a few things that we say. She knows what 'No' means, even if she ignores it sometimes. She is starting to learn how to wave 'hello,' which I enjoy. And she babbles a lot, and is probably saying 'mamamamama' to me specifically, as she is usually looking at me when she does it. She just doesn't stop once she gets it going.
She had an infection of some sort a week ago, that wiped her out pretty good. She was very lethargic for a day, so I took her in. The Doctor said her ears were a bit red, and she was running a low-grade fever, so she gave Jade antibiotics.
The antibiotics worked wonders! She was almost back to her spunky self by the next day, instead of the lethargic baby she had been the day before. First time she has really been sick, and it had made me nervous. I don't ususally like just giving antibiotics, but she was definately not behaving.
At that visit, she was 18 lbs 2 oz fully clothed, but she has her 1-year-old well baby checkup next week.
Jade had a sinus infection; we took her in to get that treated (it was gross!). She weighed 20 lbs, 6 ozs.
Well, this time it has been even longer since I updated! So no doubt many of the details of the last year are forever gone. There is probably no reason to even try to remember everything, so instead I will just go with what she is doing now, as well as some of the things we've been struggling with over the last year.
Jade is sill not walking or talking at this time. She also only weighs around 21 lbs now, and she is nearly two years old.
On the walking front: she did take her first step about a week ago, but it was a very jerky and uncoordinated effort! She can now stand unassisted for nearly half a minute however, so the therapist and her doctors don't think that she will have too many balance problems. At this time, it is believed that her problems with learning to walk and stand stem from coordination issues and over all lack of muscle strength. At her last Developmental Clinic, they went ahead and took an X-ray of her hips as they have a lot of extra range of motion to them, but those X-rays came back perfectly normal, with good form. So right now, it is believed that she will eventually be able to walk, but merely needs extra time to learn how to 'tell' her muscles what to do, and time to build up strenght in her hips and quads. Of course, these doctors haven't been kicked while playing-I think her quads are doing great!
On the talking front: once again, this is more than likely going to be an issue of control and coordination. To date, I have no concerns with her hearing ability. She can recognize the Wiggles theme song from across the house and come crawling to watch! She also responds to what we say, following directions for things like changing her diaper, taking her glasses off, taking a bath, and so on. She started to get very frustrated around January with her inability to communicate, and started throwing fits and tantrums. We started to teach her sign language to deal with this frustration, and she has been steadily picking up the signs we teach her. She spontaneously uses around four or five signs now, and with prompting uses nearly ten. Her current spontaneous vocabulary is: more, help, up/down (she uses the same sign for now, but I'm trying to get her to differentiate), bath, wiggle (for the Wiggles), and want. The signs she uses with prompting are: eat (almost spontaneous now), glasses, paper, and baby. She tries to talk some, and uses pointing freely. I vaguely recognize some words, like aaee for Katie (her sister) and owii for outside. But there is a very good chance I am merely hearing what I want to hear.
As far as her size, the doctor sounded a bit concerned. He went ahead and took and X-ray of her hand to check her bone growth. The results of this sounded ambiguous (either that or the message on my machine was ambiguous), and they had me do a detailed 5 day food diary, to determine if the cause is nutritional. I have not heard back on this, but having done the diary, I don't think this will be an issue. Her diet is not perfect, but it certainly has enough quantity. She still nurses four or five times a day, as well, which should balance things out. Hopefully they will get back to me soon on this!
Jade is a delight! She has a sense of humor, and a keen eye. She is very observant, and deeply into imitating what people around her are doing. She tries to clean up after herself (give her a wipie and watch her go!), and is trying very hard to learn how to feed herself. Her aim with stabbing a fork is poor, but after the food is on the fork, it goes right into her mouth! She still hasn't figured out that spoons need to remain level to retain their contents, either. But if I make her cereal sticky enough, she can get it from her bowl to her mouth with little trouble. She loves to play with her little stuffed animals, and blocks are another current favorite. She has managed to stack as many as eight 1.5" blocks! She especially loves to play blocks with her sister. Jade loves to 'help' me fold laundry as well, extending that activity as long as possible by unfolding nearly as fast as I can fold. She hates napping, and sleeping in general, fighting sleep tooth and nail. She gives kisses freely, and hugs as well.
She can also be very stubborn when she doesn't get her way. She knows how to say no (shakes her head at any rate) as well. If she doesn't want to do something, she lets us know just fine. And she certainly doesn't like to be told no herself!
I have no doubt that I am missing many many things, but for now, this is all I can think of! Hopefully I will become more diligent at keeping up with adding my updates.
We took Jade in to have her weighed and measered today. She was 21 lbs 2 oz, and 31.5 inches long!
Jade had an audiologist appointment today, to rule out hearing as a reason for not talking. He said that her hearing was normal for a child of her age.
We took Jade in to have her weighed and measered today. She was 21 lbs 8 oz, and 31.5 inches long. So she gained a little weight, but didn't grow any taller.