We've been home for two weeks now, and are loving every second of it. We're still amazed at how nice it is to have our own kitchen and bathroom, ceiling fans, TV, cars in the garage (as opposed to parked six or eight blocks away), and the list goes on. Mostly, we are enjoying having our family all together in one place.
Kaitlyn is now five and a half weeks old. Next Friday, the 6th, would have been her due date, and she is determinedly packing on the pounds. There's no way she'll catch up to Damon's pace (17 lb at 2 months!), but she's doing pretty well. At her last checkup on October 20, she weighed 6 lb 6 oz, so she had gained about an ounce a day since she left the hospital. At that rate, she's probably around 7 lb today. She's a very good baby, calm, has her alert times, and is occasionally smothered by her brother and sister. A few pics are posted below.
We wanted to give a quick summary of how she is doing in each of various areas that are commonly affected by spina bifida. (Tamara, Rachel, and any of you parents out there, hopefully we're not too far off in how we describe things below.) We'll try to do the same thing every so often down the road, just so you all can get a picture of her status as compared with what one might expect.
- Hydrocephalus: Up to 90% of children with spina bifida have some degree of hydrocephalus, or fluid buildup in the brain. Kaitlyn technically has this -- her ventricles have measured a little high (see here) -- but it is not symptomatic. We're watching her carefully for symptoms like excessive vomiting or fevers, measuring her head size, making sure her fontanels don't feel full, making sure she's alert, etc. We've read that for babies who had the prenatal surgery, the median length of time after birth for ultimately needing to have a shunt placed is about 180 days, so we'll need to keep watching this for a while to come. But so far so good.
- Chiari II malformation: Where the brainstem is pulled down into the cranial vertebrae, leading to the hydrocephalus described above. Children with this can also develop problems with swallowing, breathing, etc. Kaitlyn had this malformation in the womb, but it was reversed by the prenatal closure, as we had hoped. (We wrote about this in our October 7 post.)
- Leg mobility: The most obvious symptom of spina bifida is some degree of paralysis and loss of sensation in the legs. Kaitlyn's level of myelomeningocele (hers was from the L2 to S1 vertebrae) would be expected to need crutches and long leg braces up to the thigh or waist, and would probably need a wheelchair for long distances (see here). But we, and all of the nurses at UCSF, are amazed at how strong and active her legs are. She kicks very vigorously at times, moving her hips, knees, ankles, and toes, and appears to have at least some sensation when we tickle her feet and legs. We'll have to just wait and see when she gets older how well she does with crawling and attempting to stand or walk.
- Orthopedic problems: Children with spina bifida are more likely to have clubbed feet, hip dislocation, and scoliosis. Kaitlyn does not have any of these issues at this point.
- Bladder issues: Nearly all people with spina bifida have some bladder dysfunction. When Kaitlyn was born, she had some slight hydronephrosis (swelling of kidneys), so they had us regularly catheterize her each time we changed her diaper. The day she was discharged we took her to get urodynamics, where they fill her bladder with a dyed liquid and take X-rays to see how her bladder reacts. There was some good news: they did not observe any reflux of urine back up to the kidneys, and her bladder looked smooth and elastic like it should be. But they did observe what they call dyssynergia; when the bladder constricts to push out urine, the sphincter at the bottom should relax to release it into the urethra, but Kaitlyn's constricted instead for a few minutes, so she wasn't able to release it when she wanted to. She does usually urinate on her own, but we'll keep catheterizing her (5-6 times a day) just to make sure she voids as she should. As of now, this is the only major difference between her and our other newborns.
- Bowel issues: Children with spina bifida often have bowel problems leading to chronic constipation, and often need a bowel program to gain social continence. This has not been a problem for Kaitlyn yet; usually this is not an issue until they start eating solid foods. Many newborns with spina bifida do tend to void all stool constantly, creating severe diaper rashes. But Kaitlyn doesn't have a rash yet, and it looks to us like she is intentionally pushing out her BMs; we see her grunting and pushing. We don't know if this means anything yet, but we're hopeful because it appears that she does have some feeling and control in that area.
- Tethered spinal cord: This is where the cord gets tugged by scar tissue near the site of the surgery, which can over time lead to further nerve damage. If any such problems develop in the future, she may need surgery to release the tension.
- Visual problems: Children with spina bifida often have strabismus, where one or both eyes turn in or out. Kaitlyn's daddy had that condition (and even had two eye muscle surgeries to correct it), so we're definitely not counting that out yet. But so far her eyes don't appear to drift too much.
- Learning difficulties: Learning difficulties can be caused by hydrocephalus, infections, etc. We obviously won't have any way of knowing whether Kaitlyn has any such problems for awhile. Yet another "wait and see" issue.
- Latex allergies: Up to half of all kids with spina bifida are latex sensitive, so we will need to be very careful to avoid any products -- medical supplies, rubber bands, tires, balls and other toys, etc. -- that may contain latex.