Wednesday, May 25, 2011

ETV Surgery - done!

Monday Morning 7AM

We arrived at the hospital for surgery. We were grouped with the day surgery kids as well, and I would say 90% were there for ear tubes. We had been told that Ruth would need an IV before surgery to get antibiotics, but since we had decided to go with the ETV surgery instead of the VP Shunt, she ended up not needing them (they placed the IV after anesthesia in the OR). We met with anesthesia and a couple nurses, and then her neurosurgeon came to talk with us. He asked us what surgery were had decided on, we told him ETV, and he agreed that was what he would have picked. He asked us "for a favor", he asked if he could pray with us. He placed his hand on Ruth and prayed while we all bowed our heads. How awesome is that? God has a big place in a hospital, I'm glad He is with our surgeon.

We then moved out to a play room/waiting area to wait. Her surgery was scheduled for 8:45, but when 8:45 rolled around and we were still in the waiting area, it became apparent that time wasn't happening. Ruth was in good spirits considering she hadn't eaten anything since 3am.

9:30 am
Finally around 9:30am, they moved Ruth back to the final waiting area. Only one parent could go with her here, so Matt and Ruth had to say their goodbyes. Since Ruth has some major separation anxiety going on, they gave her a nose spray that made her goofy, and we spent the next 15 minutes watching the other kids in the room. Most were there for ear tubes. One poor girl was crying, she was old enough to know what was about to happen to her. When her nurse finally came for her, Ruth refused to lay down on the stretcher, so the nurse and Ruth rolled away with Ruth sitting up and her nurse behind her half laying on the stretcher/holding onto Ruth (who was a little woosy from the medicine), and pushing the stretcher with her lower body. I was the only one that cried at that separation.

I then headed to meet up with Matt in the surgical waiting area. We were amused watching how many times the ENT came in, that guy does a lot of surgeries! The nurse in the OR calls to the surgical waiting area to give any updates, and she called about 5 minutes after I got there. She wanted to know if we minded if some people observed the surgery, and I didn't. I guess since the ETV isn't done often in Spina Bifida there were many people curious to watch. Poor girl, she has always had quite the audience at her surgeries.

I got my first update from the OR nurse. Ruth was under and prepped, and the neurosurgeon was beginning his part. She told us that he would be out to speak with us when he finished. We knew the actual surgical part only took about 15-30 minutes, so we began to very nervously watch the clock. We knew if it took too long, he was pulling out and doing the VP Shunt instead, or some other complication occurred. 15 minutes past. 20 minutes past. 30 minutes past. Nothing. We were both praying silently, that wait was one of the longest in my life.

Finally about 40 minutes later out walked our wonderful pediatric neurosurgeon. With a smile! He said the surgery went as well as we could hope for. He said her anatomy was typical of what he sees in spina bifida, but he could see well enough to perform the ETV. He said there was some bleeding in her brain (he warned us that this was a possibility), but not enough to be worrisome. He told us she already had the breathing tube out, and was awake and angry! Meaning he stayed with her until she woke up! That was what took him so long to come out to talk to us.

We then waited until she was deemed stable, and met her in the hallway to walk to her hospital room on the post op surgical floor. She woke up when they transfered her to her bed, and was very upset. I picked her up and she calmed down, and after about 15 minutes, was awake enough I felt she could eat. She spent most of the day attached to me. I know she was hurting, not understanding what was going on. But she had a few moments when she was very awake and happy, enough she felt like playing. I took out my "big" camera and snapped a few photos of her during those moments. But for the most part, she was pretty pitiful.

A photo I snapped of her during one of her happy moments:

Her room setup. I kept worrying that she would hit her head on that "prison" crib!

And a video snuggling with Daddy during a happy time:

We had a visit from a local SB mom, it was sooo nice to meet her and talk to her. She brought us a bag of snacks to tie us over, it was a life saver. (thank you Erin!)

Matt also brought our oldest daughter up for a quick visit that evening.

Monday Night

Ruth did sleep fairly well, so I managed to grab a few hours of sleep. She made sure I was right next to her at all times, so I had to lay her down in her crib facing away from us so I could lay down too.


They brought her some solid foods for the first time, and she was HUNGRY! I have never in my life seen her eat that well. In fact, she has been eating 3 solid meals since then. I wonder if the hydrocephalus was affecting her more that we realized, because I was lucky to get one solid meal down her before the surgery.


We had a pretty quiet morning. We knew the surgeon had clinic that morning and didn't expect to see him until the afternoon.

Her blood pressure had been high since about the middle of the night, and we weren't sure why. We thought it might be from pain, although really she was acting ok, but we tried some higher power medicine to see if that helped. It didn't really, so we were a little concerned, but the nurses weren't freaking out about it so we tried not to.

When her neurosurgeon came by to visit, he walked in and asked "Are you ready to go home?", and we didn't argue with him! He talked with us about what to watch out for, what to call him about, and what to head straight to the ER about. She has her follow up in about 1 month, so no physical therapy until after that. We will be watching for swelling and other symptoms of hydrocephalus that would indicate that the ETV has failed. He also wants to do a repeat MRI in about 2-3 months to see if it is working. The odds of it working long term are about 50/50, so there is still a good chance she will end up back at the hospital to get a VP Shunt placed. But we are praying (hard) that this will work for her and she would NEVER need another surgery for hydrocephalus!

With all the excitement about going home, we forgot to ask him about the high blood pressure. The nurse found his PA and she said to take her blood pressure again and we will see. It was STILL high. But they felt like it wasn't enough of a reason to keep her in the hospital, so home we went!

Right before we left Ruth got a bunch of mylar balloons and a teddy bear from her Aunt. She LOVED them! Thanks Nicole :-)

We do think the ETV is working now. The swelling on her back where her spina bifida lesion was has gone down significantly. The veins on her forehead and around her eyes aren't nearly as prominent as they were. And she is EATING a ton!

The scar isn't too bad. Once her hair gets thicker is won't even be noticeable. And they didn't have to shave or cut her hair any, so from a distance one wouldn't even notice.

We have been home for about a day now, and she is slowly getting back to her old self. It is amazing how quickly kids can bounce back from such a major surgery!

I also want to mention how much we appreciate the many many many prayers, messages, thoughts, etc from family and friends! We soo appreciate it! Please keep praying that the ETV will continue to work, and she will need no more surgery!

I also want to thank my Mom, who has driven the long drive twice in the past two weeks to watch our other kids. We knew they were very well taken care of!

10 Months Old

Sunday, the night before Ruth's surgery, we had some family photos made. I wasn't sure what funky haircut Ruth would end up with, and we hadn't had any family photos done at all since her birth, so I called my favorite photographer and she was able to squeeze us in.

Thank you Tracy, I love them. If you are in the DFW area, you should definitely check her out.

{Family - if you want to order any of these, email me for the link.}

Thursday, May 19, 2011

Endoscopic Third Ventriculostomy ETV (vs. VP Shunt) in Spina Bifida

Many of our friends and family don't understand the difference in the surgeries we were offered for Ruth's treatment, so here is a brief explanation of my understanding of the two, and why we chose the one we did.

VP Shunt

A Ventricular-peritoneal (VP) shunt is a device which drains the extra cerebrospinal fluid (CSF) in the brain into the peritoneal cavity where the fluid can be absorbed. (see "What is a VP Shunt?") This is a life saving device, but it has it's disadvantages. They can get infected, they can clog, the valves can fail, requiring further surgeries to repair the mechanics.

Endoscopic Third Ventriculostomy (ETV)

Endoscopic third ventriculostomy (ETV) is an alternative to shunt placement for treatment of hydrocephalus. The technique opens a hole inside the brain to re-establish effective flow of cerebrospinal fluid (CSF).
    Advantages vs. VP Shunt:
  • No foreign object (shunt tubing and valve) implanted in the body, lowering the risk of infection.

  • A lower long term complication rate compared to a shunt.

  • The chances of improving may be lower with ETV compared to a shunt

  • Although very unlikely, the risk of serious complications with ETV compared to a shunt operation.

What we chose and why:

Ruth's nuerosurgeon mentioned at her last visit that she may be a candidate for an alternative surgery. ETV is not widely done for treatment of hydrocephalus in spina bifida, especially in young children. The way it was explained to me by Ruth's neurosurgeon (or more likely the way I understood it) was Spina Bifida brains often have a little different layout, that can cause the surgery to be more difficult. He looked at her MRI, and said she is not a perfect candidate, but she is a promising candidate. But he did say, he could start the surgery, and not be able to continue for that reason. Meaning he would then place a VP shunt instead.

The ETV also has a much lower initial sucess rate. There could be just too much fluid, and it could start leaking through the inicision on her head, causing him to possibly place a temporary drain and then a vp shunt.

There are also higher risks of serious complications with the ETV, because it is a more invasive surgery. Bleeding is a big one.

So with all that, why should we even bother with the ETV? Well, the biggest reason, if it works, she will not have a life long dependence on the VP Shunt, a mechanical device that can and often does fail. It is a more "natural" treatment for hydrocephalus.

For the ETV, our surgeon would make a nickel or dime size hole on the front left or right side of her skull. For the VP shunt, the incision would be back behind one of her ears, and the hole in the skull is much smaller, although they also make an incision in the abdomin for the shunt tubing. While, as a baby, these both would be very noticable, as she gets older her hair would cover the scars and no one would know.

We really hope and pray she is one of those with no complications and require no further treatments. We do realize there is a strong likelyhood that she will end up needing a VP Shunt anyway, and while I hate that she may have to undergo a 2nd surgery, that could and often does happen with the VP Shunt as well (called shunt revisions). So even if we chose to skip straight to the vp shunt, there are no guarantees we are saving her from more surgeries.

Like the fetal surgery, it's one of those hard decisions as a parent you have to make for your child. I just pray we are making the right one.

For more information about the ETV, see this page.

Please continue to pray for our sweet Ruth. That the surgery goes without complications, that the ETV is successful in treating her hydrocephalus, and that her recovery is easy and not painful.

I will leave with a cool Youtube video of a nuerosurgeon walking his students through an Endoscopic Third Ventriculostomy surgery:

Crawling & Standing!

On a happier note, Ruth is crawling much faster! I can no longer set her down in one part of the room and expect her to stay there. She is on the move!

And a video:

She is also standing for short periods playing with her toys! She is not pulling up yet, but her physical therapist has been working with her on just that and she is getting closer :-)

Her ankles roll in a little bit when she stands, so she wants me to have her pediatrician write a prescription for SMO's, which are ankle braces to give her more support. The hope is with these she will just take off!

Here is a picture of what the SMO's look like:

She will be taking a little break from PT while she recovers from the ETV surgery, but hopefully not too long. She is making such great progress.

MRI & Neurosurgeon Appointment

Ruth had her first MRI under sedation since leaving San Francisco. I hated that she had to be put under general anesthsia, but understood. I was a little worried about the no eating thing beforehand, but since she is breastfeeding, I could nurse her up until about 6 hours before, and she could have clear liquids until about 4 hours before. She was the first case of the day (we got up there at 6:15 am), and so I just woke her up at midnight and again right before 2 am to nurse, and she did fine. Since she has some major separation anxiety going on right now, they gave her a mild sedative before taking her back so she would be loopy, and she was silly on that stuff! But it worked, no tears going back. Her MRI went quickly, and about an hour later they called us back. Immediately I could hear her screaming, she woke up and I wasn't there! Poor baby. She handled the sedation just fine, so much better than last time, but she was only 5 pounds then too! She wasn't even all that groggy. She did have a nasty reaction to the tape they used on her face and chest, it took about 24 hours to go away. She also has been a little raspy when she cries, I guess the tube irritated her throat.

Well, Ruth's neurosurgeon appointment didn't go as well as we had hoped, but it wasn't much of a surprise either. Her MRI showed that her ventricles have continued to *slowly* increase, and her head circumference is now at the top of the growth chart. He now considers her to have hydrocephalus, or "water on the brain", and thinks it's time for surgery. We were given the choice between two different types of surgeries, one being a VP Shunt, the other a ETV. I will explain the difference between the two in a separate post.

While we are disappointed, we knew this was coming. I have been watching her head slowly increasing on the growth curve, and didn't have much hope that the fluid was stablizing.

The surgery is scheduled for this Monday assuming she passes her pre-op exam tomorrow. We expect her to be in the hospital one to two nights unless there are complications. Please keep her in your prayers.

Sunday, May 8, 2011

Teeth are coming!

Alternately titled: "Trying to catch flies"
Alternately titled: "Cracking my sisters up!"

Ruth has a couple big bumps on her bottom gums, and keeps running her tongue over them. It looks a lot like a frog trying to catch flies! CRACKED her sisters up!

Thursday, May 5, 2011

9 Months Old & Moving Forward!

9 Months old! Wow, has she gotten big!

Her personality is shining, and she definitely tells us what she wants. She LOVES her sisters, they can get her laughing like no other.

She has decided this last month that she really likes her momma. So much, that momma needs to stay within 2 feet of Ruth at all times, or she will protest. Loudly. And heaven forbid anyone she doesn't know should try to hold her!

Milestones & Stats

She is sitting VERY well. I can pretty much set her down without worrying about her toppling over.

She is working on standing in physical therapy. We set toys on the ottoman in our living room and let her play to work on her strength. Her physical therapist thinks she may need tiny little ankle braces since her feet roll in when she stands, but she likes to give them a chance to build up strength before adding braces.

She is now MOVING FORWARD! All it took was a little motivations from some new toys, that happen to roll away from her :-D

She has decided in the past couple weeks that baby food is not for her. She would much prefer whatever we are eating. And she is doing pretty well eating soft table foods. I can't say I blame her! I wouldn't want to eat that baby food either.


Nothing new to report. Her head circumference did go up some percentiles at her last pediatrician appointment, so we are expecting to find that she will need a shunt. Her MRI is in a couple weeks. Please keep praying.

Urology & Ortho

Nothing new to report! We don't go back to either one until July :-)

Spina Bifida Walk & Roll

As my last post said, we are participating in our local Walk and Roll this year, and we NEED YOUR HELP to reach our goal of $1000! Please take a moment to donate whatever you can, even just one dollar helps! And Ruth would love to have your support!


Like the cute little headband that Ruth is wearing in the pictures? I have decided to donate ALL the proceeds from the sales of those headbands to Team Ruth for Walk and Roll 2011!

They are only $8 each (ship free), and adjustable, so they fit babies all the way to adults.