Spina Bifida Awareness

October is Spina Bifida Awareness month!  I wanted to share a really cute blog I’ve come across.  This mom is featuring the Faces of Spina Bifida, where she profiles a couple kids each day who have SB.  As you can see, they all are happy, healthy kids who just happen to also have this condition.   Reading all these blogs the last couple months has really helped me to realize that we can do this and it’s not as scary as we thought it was going to be. 

http://themclellands.blogspot.com/

Since this is awareness month, there’s also been a lot of attention to the fetal surgery.  This year marks the 12-year anniversary of the famous photograph where the fetus is holding the hand of the surgeon.  I think it’s great that it’s drawing attention and awareness to Spina Bifida.  I certainly hadn’t been familiar with this until we got Leah’s diagnosis.  We were given the option to look into fetal surgery and decided it wasn’t for us.  We’ve had a lot of people ask about it, so I wanted to share what I know and why we decided not to go through with it. 

It’s actually very revolutionary technology where a neurosurgeon operates on the baby in utero.  He basically performs a c-section on the mom, who is under general anesthesia, repairs the baby’s spine, and then closes mom back up and she stays pregnant.  The surgery is usually done while the mother is 18-24 weeks pregnant, so we did have a few weeks to decide whether this was something we wanted to do.  If we were interested, we would have been referred to one of 3 hospitals in the country currently performing this operation – Vanderbilt in Nashville, Children’s Hospital of Philadelphia, or UC – San Francisco.  That would have meant several weeks in one of those cities just determining if we qualified for surgery, then we would have had the surgery, and I would come home after several more weeks, where I could be monitored here by my doctors. 

The benefits are that the baby gets surgery when she’s very young, and there is less time for the opening to be exposed to amniotic fluid.  The results so far show that fewer nerves are damaged and in some cases the Chiari malformation (the base of the brain) is able to be repositioned back into it rightful place in the brain.  But it does not cure Spina Bifida.  And that’s why we had a hard time justifying the risks to me and to our baby.  There is an increased chance that she would be premature, which carries its own set of challenges.  The uterus isn’t meant to be cut open at just 20 weeks pregnant.  And I would be at a higher risk of uterine rupture and premature birth with future children.  If this was a life-saving surgery, I would feel differently.  If Leah was our last child and we decided we didn’t want any more kids, I would feel differently.  If this could cure her Spina Bifida, I would feel differently. 

This was OUR choice, this was what was right for us.  That doesn’t mean I don’t think other people shouldn’t do it.  It is the right thing for lots of other families.  And it also doesn’t mean we’ll be risk averse to all new technologies that could help Leah in the future.  I'm glad we heard about it and talked to several doctors who has just been out in San Francisco at a conference on the surgery.  We just decided it's not for us.

We're pretty much in the final home stretch.  My doctors have gone from telling me to call when I have 4 contractions in an hour... to 6... to now when they're 5-7 minutes apart.  That means I'm getting close!!   It's hard to believe that it's now only 3 weeks away (at most) when it feels like we just found out.  We're both feeling a lot of emotions, but I think most of all we just can't wait to meet our baby girl.

Our First Babies

Yes, Leah is our first human baby, but we've had Jack and Jill for about 8 years now.  They have been treated like royalty in our house and I have to wonder just a little bit how they'll do when we bring a baby home.  Jack is incredibly friendly and I'm sure will be very interested in her... that is, until she starts screaming or reaching for him.  Jill is my baby and follows me everywhere.  As soon as I sit down, she's on my lap, which is tough to do these days.  I like to think that I'll be feeding Leah with Jill curled up next to us.  Hmmm, am I dreaming??

They are also very interested in all of Leah's new stuff.  Here they are trying some of it out.  I'm sure we'll get the side-eye from those of you who aren't cat lovers (or animal lovers at all).  But not to worry... I keep the door to Leah's room shut and plan to clean everything again before she comes into the house.


Jack testing the bouncy chair.  He hightailed it out of there when it started vibrating!!

Hey, this looks like a comfy spot for a nap!  (he didn't stay for long)

Ok, so this wasn't the cat's fault.  She clearly didn't enjoy this.  And Ty was just goofing around.  You won't see us walking around town like this. 

Happy Anniversary!

Ty and I celebrated our 9 year wedding anniversary this week.  On October 12, 2002 we said “I Do” and even though we were really young at the time, I know it was the best decision I ever made.  On Wednesday night I was updating our anniversary book, and we had so much fun reading about all the stuff we’ve done in the last 9 years and how we’ve celebrated this day.  We’ve been in 3 houses, traveled to 2 continents, hosted Thanksgiving and Easter in our home, watched 3 of our siblings get married and have babies.  We’ve also had our fair share of challenging times, including this year as we’ve dealt with our baby’s diagnosis.  But the good has far outweighed the bad, way more ups than downs, the smiles and laughter more plentiful than tears, and we still really like spending time together. 

To my husband, I love you more today than ever. 

We set a date!

It looks like Leah’s birthday will be Monday, November 14!!  That is, unless she has different plans to come early.  Here are some fun facts about this date:

• She will be a Scorpio.  Here’s what astrology.com says about this sign: “Beneath a controlled, cool exterior beats the heart of the deeply intense Scorpio. Passionate, penetrating, and determined, this sign will probe until they reach the truth. The Scorpio may not speak volumes or show emotions readily, yet rest assured there’s an enormous amount of activity happening beneath the surface. Excellent leaders, Scorpions are always aware. When it comes to resourcefulness, this sign comes out ahead.”  
• According to the Chinese zodiac, she will be born in the Year of the Rabbit.  The Rabbit is a lucky sign.  Rabbits are private individuals and a bit introverted.  People born in the Year of the Rabbit are reasonably friendly individuals who enjoy the company of a group of good friends.  They are good teachers, counselors and communicators, but also need their own space.
• She will share a birthday with Condoleeza Rice, Veronica Lake, Yanni, Britain’s Prince Charles, King Hussein of Jordan, and Claude Monet. 
• Uncle Marty needs to say some funny things about what happened on this date in history.   

I will continue having weekly doctor appointments until then.  Last week’s appointment went fairly well.  On her growth check, we can see that she continues to get bigger and weighs in around 4 lbs.  Her head size still lags behind a few weeks, but the good news is that she’s continuing to grow.  Everything else looks really good – amniotic fluid, practice breathing, blood flow in/out of her heart and brain, and heart rate.  And each ultrasound technician comments on how much hair she has.  Overall I’ve been feeling really good too.  The doctor commented that my ankles aren’t as swollen as he would expect in someone who’s 34 weeks along… even though Ty and I were laughing about my “cankles” the other night. 

The bigger question is whether we’re ready for this little girl to get here.  I think the resounding answer from her Daddy and Mommy is YES!!!  We can't wait for her to get here so we can see her (and see how much hair she actually has!) and hold her and kiss her and see her wear all the ridiculously adorable outfits we've received.   But as much as we both want to meet her, I hope she stays put for the next 5 weeks.  She’s a little baby and needs to get bigger for her surgery. 

Fun Pictures!

We've been busy getting ready for Leah's arrival.  Here are just a few of my favorites. 

Leah's crib and bedding

She already has a closet full of clothes :)

Her room...

Shelves full of books, toys, diapers... probably the neatest it will ever look

Hopefully she'll be entertained by one of these.

Daddy just couldn't resist... isn't this the cutest chair?!?!  Hopefully she'll actually sit in it.



32 Weeks and Counting…

The last couple weeks have been very busy for us.  Last week Ty and I had a tour of the hospitals where I’ll deliver and where Leah will have surgery and stay until she’s ready to go home.  They are 2 separate hospitals that are across the street from each other and connected by a tunnel.  We started out at the birth center with the operating room where I will be.  Right next to that is the resuscitation room where the Neonatal Intensive Care Unit (NICU) team will stabilize her before taking her to the Children’s Hospital.  Depending on how she’s doing, they may be able to bring her back into my OR so I can see her quickly before they take her.   Ty will go with her to Children’s, which means I’ll be alone in the OR while they finish my surgery.  I will then go to recovery until I am stabilized, and then I’ll go on a stretcher to see her in the NICU… It sounds like an NBC medical drama!!  The pediatric neurosurgeon’s team will be called to come and evaluate her for her back surgery, which is typically on that day or the following.  They will also check her brain ventricles for hydrocephalus and determine if/when she will need a shunt. 

The NICU rooms are all private with a couch and chair so we can spend as much time in there as we want.  The rooms also have wireless internet, so we’ll be able to keep everyone updated on her, and maybe even have Skype dates with her aunts and uncles.  The hospital has a Ronald McDonald House on the same floor as the NICU where Ty and I can hang out, cook meals, make phone calls, watch TV, whatever. 

We also got to meet Dr. Marker, who is the Spina Bifida doctor.  He will come to see her in the hospital after she is born and will care for her throughout her childhood.  He’s been doing this for a long time and comes highly recommended by everyone we talk to.  We are in very good hands! 

This past weekend we went to the Spina Bifida Association of MN picnic and got to meet a lot of other families and kids.  There were some kids who were running around with just leg braces and others who used walkers or who were in wheelchairs.  But aside from that, they were just regular kids… funny, smart, sweet and they all had great personalities!!  We really enjoyed talking to other parents about where they go for their care and what kind of equipment they use and how they do in school.  It was a little overwhelming and it definitely makes it feel very real now, but I feel so fortunate that we’ve started to build a network of other parents we can call for advice or information or just to vent.  Leah even won a door prize!  I picked out a big pink bunny for her.

I’m now going to appointments weekly.  Last week she was really moving around and go another perfect score on the bio-physical profile.  Brain ventricles are keeping the same, no change since last time.  The technician could see her ear and it looks just like mine.  She also can tell that Leah has hair… lots of hair!!  We got to see her wiggle her toes, yawn and stick out her tongue… so cute!!  But, her little tiny pea head is still a little bit of a concern.  It’s still measuring about 3 weeks behind.  Last time her belly was measuring small, though that’s catching up..  She is still small, even though I’m gaining enough.  They aren’t overly worried yet, and her head continues to grow, which is good, but just something that will be watched closely.

This weekend I also finished getting all the essentials for Leah’s room.  My friends here in town threw me an awesome baby shower last week.  I had a great time and got stocked up on blankets, crib sheets, books, toys, bath soaps, swaddlers… I love having other mommy friends!  On Saturday I got a mattress and some diapers and did about 5 loads of laundry.  I know I’ll be sick of doing loads of baby laundry in a few months, but it was so fun folding little tiny socks and baby blankets.  We’re pretty close to having everything ready for her.  In the meantime, I just need to fatten this baby up before she’s born.

New Wheels and Good News

I’m down to single digit weeks left of the pregnancy (9!!), and I just can’t believe how quickly it’s flown by.  We haven’t scheduled my c-section yet and probably won’t have an official date for a few more weeks.  But it’s kind of nice knowing that I won’t be a week or more overdue.

I had another appointment yesterday.  How lucky that I’ve gotten to see Leah so much before she’s even born!!  First they hooked me up to the fetal monitor machine to measure her heartbeat and had me push a button each time I felt her move.  She started out being a little stinker… she was moving like crazy while I was in the waiting room, but as soon as they hooked me up to everything, she got very still.  After a little bit of poking and coaxing, she started moving around again.  Then I had another bio-physical profile, where, like 2 weeks ago, the technician looks for 4 things: heartbeat, breathing, movement and muscle tone, and she was a little champ!  The tech also took a quick measurement of her brain ventricles, which is important to know if she has or will develop hydrocephalus.  Her left ventricle stayed consistent and her right actually measured smaller than it did last week…. WAY TO GO LEAH!!!  That was super good news to hear.  Now, it may just be that measurements from week to week are off a bit (it’s hard to be very exact), but it’s so great to know that it’s staying constant.  They also weighed me and I’m up 20 pounds… 5 lbs in the last 2 weeks… oops!  I guess I overdid it a little bit on the ice cream and treats lately. 

On a more fun note, Leah and I both got new wheels yesterday.  I traded in my Saab for a Honda Crosstour.  It’s very nice, a little bigger than a sedan with a hatchback, and has tons of room in the backseat.  I have to say, I was a little sad to trade in my little sporty sedan for something bigger.  The Saab was very good to me over the years, but I know I need something to fit a stroller and car seat and all the accessories that go along with a baby.  Speaking of strollers and car seats… Leah’s first set of (many!) wheels came yesterday too, along with her car seat.  I had so much fun driving it around my living room after Ty and I put it together... haha!!  I can't wait for the day soon when we put her in the car seat to go home for the first time!