Monday, December 27, 2010

Wednesday, December 22, 2010

Off with the casts!

So, yesterday the whole family headed to Scottish Rite to see the last set of casts come off!

Her sisters waited patiently, enjoying the very cool waiting rooms, and playing games on our phones.

Ruth handled the cast removal with ease. She is never crazy about the loud noises, but didn't mind too much.

The doctor was running behind, so we waited in the exam room for a very long time after her casts came off. The sisters were losing some patience, but they still did pretty good.

After the doc came and looked at her feet, he said she is ready for the braces! He talked to us about the importance of keeping them on, that her feet could go back to club position if we don't.

Then we headed downstairs to get fitted for the braces. The younger sisters stayed in the waiting area with Daddy to play, while Ruth, myself, and my oldest daughter went back to the exam room.

She was measured for the braces. Her left foot is smaller than her right, which the resident told us was common for clubfoot. I was instructed on how to properly put them on, and what problems to watch for.

She is to wear them all day, with three 30 minute breaks. We come back in 2 weeks for follow up. She will probably be in the braces full time for about 3 months, then after that, just while sleeping.

After we finished up, we grabbed some popcorn for the sisters and headed outside to play in the playground. It was a beautiful day, over 80 degrees outside, so we spent as much time outside as we could.

After the playground, we grabbed some lunch and headed to the Fort Worth botanical gardens. The girls loved running around enjoying the beautiful day.

I very much enjoyed giving her a "real" bath that evening. Her legs definitely needed a good scrub down!

Tuesday, December 21, 2010

Baths with clubfoot casts

Since Ruth has plaster casts to correct her clubfeet, she can't have a typical bath. And since I had knee surgery, I can't kneel down quite as easily either, so this is the arrangement we've come up with to keep her from getting too stinky!

We use a "Leachco Bath 'N Bumper Cushioned Bathtub" because it does not absorb water, but keeps her cushioned.

Under her naked bottom, I place a wash cloth, and a disposable diaper (usually from the stash that she has outgrown before we used them all). This helps keep the cushioned bather from getting dirty, although it's pretty easy to rinse off.

I keep the leg warmers on covering her casts, in case a little water splashes on them. I change out the leg warmers after her bath.

I place all of this on my bathroom counter. I use the little bath tub from the NICU full of warm water in the sink (although you could also just fill up the sink), and then hang the top part of the cushioned bather (where her head is), so that it's hanging over the sink to help drain any water I pour on her.

I keep a wet wash cloth on her, making sure it stays warm, to keep her from getting cold while I wash her up.

And the result is, a much less stinky baby, even without a real bath!

Urology Update

So, this is last weeks news on urology...

Ruth had her DMSA (kidney scan) scheduled at Children's in Dallas. At 7:30 AM. Not sure why I get so lucky to get all these early appointments, but hey - at least it doesn't take my entire day! Traffic is not so friendly that time of day, however.

It was just me and Ruth for this adventure. We parked in the same parking garage we had for the fetal MRI last May. I soon discovered it was not the best place for the Children's hospital, and we ventured across the other Hospitals to find the right one in cold. Ruth was happy and bundled in her car seat, so not a big deal.

We checked in at Admitting, and after paying our copay and getting a bracelet (although I got to wear it, since Ruth still had her casts on), we headed back to radiology. A short wait later, we were brought into the back, where they placed an IV to give Ruth the radioactive dye needed for the scan. (I was assured it was harmless). The nurse did a great job placing the IV, Ruth was more annoyed than upset. They immediately removed the IV. We then got to wait 2 hours for the dye to make it's way to her kidneys, so off to the cafeteria we went. I ate a small breakfast while Ruth napped on my chest. Once our time was up, we headed back for the scan. She was well rested and full, so she was happy when it was her turn on the table. They strapped her down from the chest down (leaving her arms free, thank goodness).

The machine had children's stickers all over it, so the whole 20 minutes or so it took to get the images, she just tried to get at the stickers. It kept her very entertained, no crying.

Tuesday morning, Ruth suddenly started running a high fever, so I took her in to her pediatrician to check for a UTI. The quick dip came back clear, so they also drew blood to see if anything else was going on. She was pretty pitiful, but I was glad it didn't look like another UTI.

Her appointment with her urologist was that afternoon at Scottish Rite. She had a renal ultrasound first, and Ruth wasn't real crazy about this one. Her bladder was VERY FULL for the entire scan, so at the end they had me cath her to empty her bladder so they could get pictures of her bladder empty. (For a child with a supposed OPEN bladder neck.... interesting..)

The appointment with the urologist went well. We got the results from the DMSA scan - which were GREAT!! Her kidneys showed no scarring, and great function. The doctor said that is the money test - if she does good on that test, she is doing good! So that was wonderful news! Although her renal ultrasound from earlier showed some swelling of her right kidney (the same kidney she has grade 4 reflux on). That was somewhat concerning, although the urologist said it may have been because her bladder was so full. So right now, no change in plan for her care. He wants to see her back in 1 month to recheck the swelling on her right kidney.

So, we talked a little about the concern her old urology nurse practitioner from San Francisco had about her care. (They feel she should be on medications and cathing.) He basically said that she can't prove her methods are better, and he can't prove his are better.... yet. But he feels most babies don't need cathing unless they start getting infections that risk damaging the kidneys. He said reflux alone won't damage her kidneys. He said the UTI's she have had so far are not concerning because her fever never got over 101. He said not to worry about low grade fevers. I'm not sure how I feel about all this. All the information I was given when I was pregnant talked about the importance of protecting the kidneys. I worry about regreting this later after damage has been done. However, I do feel confident that this urologist is closely monitoring her. The DMSA looked great. He is closely watching her UTI's (or hopefully lack of them), and frequent renal ultrasounds as well. He did say that if the next renal ultrasound still showed swelling, he would like to repeat the VCUG (the initial test done in SF after she was discharged), to see if something was going on with her bladder.

So, for now, still no cathing or medications. Follow up in 1 month. Please continue to pray for her health.

Wednesday, December 15, 2010

Neurosurgeon Appointment

Ruth had her first checkup last week with the Neurosurgeon since nicu discharge.  I was very nervous about this visit, since she doesn't currently have a vp shunt (a device that drains excess fluid from the brain to the abdominal cavity, where it is absorbed).  One of the reasons we initially found Ruth's spina bifida on ultrasound was because she has hydrocephilus, which is "water on the brain".  Most kids with spina bifida have this, and most end up needing a shunt to control it.  Fetal surgery has shown to reduce that by about half, and so far she is in the half that doesn't have one.

So, needless to say I was worried we would go to this appointment and hear the words "your baby needs brain surgery".   The main symptoms are a bulging soft spot, rapidly increasing head circumference, vomiting, sunseting eyes, and severe discomfort.  Ruth doesn't really have any of those, other than her head jumped in size from 2 months to 4 months, but since the rest of her did also, that isn't overly concerning.

We met with one of the fellows first, and she took her history and made copies of all her records from SF.  Then the neurosurgeon came in.  He asked us questions about how she was doing, eating problems, breathing problems, and other things that can be symptoms of a neurological issue.  She has been doing great, so no concerns.  Ruth had fallen asleep by then, and the doctor looked at her head and back, and said he felt she was doing fine.  He wants to do a rapid MRI (no sedation) in 3 months just to check her hydrocephilus, but for now, she is good!

I really liked this surgeon.  Someone of that elite specialty you might expect not the greatest bedside manner, but he was really friendly, didn't rush and took the time to answer all our questions and concerns.  There are many other potential complications besides hydrocephilus, and we talked about those some.  He basically said he treats the symptoms, not what he sees on a scan.  He is also very conservative in shunt placement, which I appreciate.  Definitely don't want her to have a surgery if its not needed!

We talked about the MOM study and fetal surgery.  He said overall he isn't impressed with the results from the fetal surgery vs. the huge risks.  Although as a surgeon, he thinks its very cool and would love to learn to do it depending on the findings of the study.  We did show him the photos from the surgery (sorry, can't post those online).  That seems to be a theme here, not many of her current SB docs are really crazy about the fetal surgery.  A big contrast in the specialists we met before her surgery, which all thought the world of it!  I'm not sure what the study will conclude, but I am so grateful we got the chance to participate.  The odds are some of the damage was prevented by closing the opening to her spinal cord earlier, and that's something I feel made all of it worth it.

So, overall great checkup.  She is not out of the woods yet, so please continue to pray for our Ruthie.

Monday, December 13, 2010

SBANT Christmas Party

About one week ago we attended our first Spina Bifida Association activity, our local chapter Christmas Party!

It was out at a local Airplane Museum.

Ruth was not all that impressed. She fussed until she was fed, then slept the majority of the time.

The activities included arts and crafts, a puppet show, hula hoop performer, and cookie decorating.

Two of the girls got their face painted (the rest weren't interested.)

And a visit from Santa and Frosty!

We also got to explore the museum, which was pretty nice! The kids enjoyed playing in a commercial cock pit probably the most.

We finally met a couple local families that we had connected with online, that was nice! Although the kids kept us so busy I didn't get to visit nearly long enough!

Friday, December 3, 2010

4 Months Old!

Well, she is almost 4.5 months old now, but better late than never!

Ruth is doing great. Right on track developmentally.

She is smiling and really talking/cooing to us. Almost giggling, so close to it. She is SOO sweet!

She is now sleeping through the night consistently. She is still sleeping in our room, but as soon as my knee heals enough that I can walk up the stairs easier, she will move to her own room!

She has also found her hands. She will suck on them, and chew on them. She bats at her toys with them. She will hold her hand out and just stare at it while she wiggles her fingers. That is kinda funny to watch!

She is holding her head up well, and seems to enjoy tummy time when I can keep her from rolling over! I tried to take some photos of her on her tummy, but she was too interested in looking at all the stuff around me, I couldn't get her to look at the camera!

She does have hair. I know it's hard to see in some of the photos because it is pretty light, but she isn't completely bald!

She weighs almost 15 pounds with her casts on. We estimate the casts weigh about 2 pounds, so that 13 pounds! Little chunker!

It is hard to get a true length with the way her legs are bent in the casts, but even with BENT KNEES she is at 50% for a 4 month old! Keep in mind she is really only suppose to be 2 months old (since she was born 2 months early), so she is a tall girl!!


Her head circumference percentile has also gone up from 10% at 2 months to 50%. While this is concerning, the pediatrician wasn't overly concerned since the rest of her body has also grown SO MUCH. Her sisters all have big heads too, so it could just be genetic.

Remember this photo? Look at the HUGE difference from 2 months to 4 months. She would look kinda funny if her head didn't grow with the rest of her body, right? I hope that's the case.

We go see the neurosurgeon here for the first time this week. I am very nervous about this appointment. I have visions of emergent news, surgeries, and other bad things. I really have no reason to believe any of that will happen, other than it CAN happen. Ruth is showing no signs of increasing hydrocephalus other than the increase in head size. Which could be normal growth. And of course, the appointment at 7:30 AM, a good distance away from our house, so I am grateful for good friends that can take our other kids to school and preschool so Matt can join me at this appointment.


We are also having some concern over her bladder and kidney health. Remember that UTI a few weeks ago? Well, her pediatrician ran a repeat culture last week to make sure it cleared up, and IT DIDN'T. Or she has a new one. So, she is back on antibiotics.

Before Thanksgiving, I spoke with one of the MOMS trial nurses (they call every 3 months or so to check in), and got the email address of the urologist we saw in SF. So I sent her an email, just asking what we were risking by not cathing, and she told me we were risking bladder growth and kidney damage. And she felt our case was being mismanaged. SO, that's concerning!! I called over to Scottish Rite to update them on the latest UTI and also told them about the SF urologists concerns, and they are bringing her in earlier now. She has a DMSA scheduled in 2 weeks, which is a scan that checks for kidney damage and scarring. She now has an appointment with the SR Urologist the day following that scan. I'm hoping we can get some of my concerns cleared up. I think I would prefer the conservative (or is it aggressive?) approach of cathing and medicine to prevent damage from happening, although I hate that too! Ugh! Renal problems aren't something to mess around with tho, in the past RENAL FAILURE WAS THE LEADING CAUSE OF DEATH FOR SPINA BIFIDA KIDS. No messing around here.

Thursday, December 2, 2010

Heel Cord Lengthening Surgery for Clubfoot

Ruth had her tendon lengthening surgery on Tuesday at Scottish Rite. It is pretty "minor" in the world of spina bifida surgeries, but it was also the first one she has had since her back closure (in utero).

First they came and took off her casts.

Look at those thighs! It's kind funny, she has a major fat roll above where the casts stop on her thighs. It will be nice when her fat can even out a little, lol.

Then the doctor came in and looked at her feet. Her right foot almost didn't need the surgery, but was still a little tight. Her left foot definitely needed it.

So they put a hospital bracelet on her, and initialed both her ankles. I guess that's common practice in orthopedic surgeries, as I had the surgeon's initials on my knee before the surgery as well.

The surgery entails a small incision right above the back of her heel, and they cut the achilles tendon. They use a skin numbing spray, but no general anesthesia. They then cast her feet into correct position, with the hope when the tendon heals, it will be longer, and won't pull her feet back into the club position.

So, then they kicked me and Me-maw out. I'm not sure I'd want to see it, but it was hard leaving my baby girl behind. We waited in the waiting room for about 10-15 minutes and then they came and got us. When we came in she wasn't crying, but her eyes were very puffy. They were finishing up with her casts.

She will have this set of casts on for 3 weeks. She gets them off the week before Christmas and then is DONE WITH CASTS!! She will then go to braces, which looks like shoes with a bar between them. She will wear that full time for 3 months, and after that only at naps and nighttime until she is walking.

She had a LOT of air in her tummy after that experience. I left a bottle in there for her, and apparently between that and crying, she got a lot of air. I did get one big burp out of her before we left, but I guess it wasn't enough. Baby girl had some major gas the rest of the day. So, not sure if her distress was from that or the surgery, but she was a little pitiful the rest of the day.

Some of the blood from the surgery soaked through the casts. I'm glad they told me to expect that, or I would have been freaking out a little.

Looking forward to saying goodbye to those casts in a few weeks!!