Omphalocele Update

In the midst of a crazy Fiesta week in San Antonio, we loaded up the car and headed to Houston for Harper's check up at TCH.  We had been told in the fall that we would plan for surgery this summer based on her stomach and how it was looking.  The muscles are still splaying and when she strains, her stomach has a bulge that pops out - kind of like a giant, vertical hernia in the middle of her stomach.  We had also been given the directions to either put her back in PT or keep her in gymnastics but to focus on strengthening her abdomen and core muscles.  So we've kept up with the gymnastics which Harps loves but I don't see a future as the next Gabby Douglas - the Squirrel has her mother's unfortunate lack of coordination.   

You can imagine our surprise and happiness when Dr. Cass said he was very pleased with how Harper was looking and wanted to see her back in the fall - no need for surgery this summer!  Dr. Cass said her abdominal muscles were looking much better than they were earlier this year and he'd like to hold off a little longer to see what kind of natural repair her body can do on it's own before taking medical action.  He does still feel like she'll need surgery at some point but the better she looks on her own, the less invasive the surgery will need to be.  There can still be some improvement to those core muscles and surgery will eventually help.  He also thinks we can help the look of her stomach from a cosmetic standpoint.  But overall, he was pleased and you can only imagine how happy we were to not have to worry about surgery over the summer with all we have going on with Steve.  

On a side note, Harper's parents are idiots.  Harris stayed overnight with Honey and Grandy so that we could give our full attention to what we thought would be a pre-surgery appointment.  While Harper loves her little brother and the constant audience he provides for her, she loves having her mom and dad all to herself every now and again.  We went out to dinner the night before her appointment in Houston.  Walking back to the car, the Squirrel was holding both of our hands, wanting to be swung in between us.  Apparently, our swinging must have been a little too exciting because by the time we got to the car, she was screaming in pain and complaining about her arm hurting.  

After a night in pain and tears spent in a hotel room with a two year old, we thought we had done some serious damage and were feeling like pretty crappy parents.  Thankfully we had our TCH appointment and asked if they could take a look.  They booked us in with ortho, sent us over for x-rays and added about 2 hours on to our appointment and trip back home.  Well, low and behold, while the x-rays were being taken, she miraculously healed.  The crying stopped and by the time the doctor from ortho came to see us, we had a Squirrel that was laughing and singing.  Apparently, we gave her nursemaid's elbow - we pulled her elbow out of joint. Awesome.  When they took her x-rays, her arm was being twisted to get different shots and they managed to accidentally pop her arm back in socket.

So moral of the story - don't swing your kids around by their arms!  And if you're going to, be sure you have an appointment somewhere on the campus of Texas Children's Hospital the next day.  

Omphalocele Update

On Tuesday, Jared, Harper and I headed to Houston for the Squirrel's annual appointment and check up with Dr. Cass. Cito stayed back in San Antonio with Honey and Grandy.

Our appointment was early on Wednesday morning so we woke up early, grabbed some breakfast and scooted over to TCH. We've known for the last six months or so that Harps would definitely need another surgery at some point. The muscle wall in her abdomen has become pretty bulgy so we were anticipating talk of a future surgery.



Dr. Cass wasn't too pleased with the overall look of Harper's stomach. Basically the fascia that was brought together during her last surgery wasn't as good quality as they originally thought. It seems that it's stretched and thinned, allowing for the bulginess that we see. He is also a little concerned about how potbellyish (my words, not his) her abdomen is looking. Her ribcage is still pretty small for her size so this could be the cause. Lastly, I've noticed some curvature in her spine so I asked Dr. Cass to take a look. One reason why we love TCH is that with no hesitation, he sent us over to pediatric radiology so that we could know for sure if she has scoliosis. We are still waiting on the results of the x-rays.

We will head back to TCH this spring to meet with Dr. Cass (pediatric surgery), the pediatric plastic surgeon and the pediatric orthopedic surgeon to determine the game plan and then the Squirrel will have surgery over the summer.



Jared and I were anticipating surgery again at some point but this appointment really seemed to take the air out of us. I guess after being on edge for Harper's entire first year of life, we got use to cruising along this last year and a half. Her omphalocele has literally been a non-issue for us and now it's coming back in the forefront. But we know God is good and we put our faith in Him to prepare us for what's ahead. And if TCH keeps handing out stickers at every turn, the Squirrel will be more than happy!



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Omphalocele Awareness Day

The Meabons are sporting our black and white today in support of the first ever Omphalocele Awareness Day!    


"An omphalocele is a birth defect that occurs early in pregnancy, in which the abdominal wall does not close properly, and...some or most of the abdominal organs protrude into the umbilical cord.   A smaller omphalocele occurs in 1 of every 5,000 pregnancies, whereas a large omphalocele occurs in 1 of every 10,000, and is typically diagnosed through an ultrasound.   An omphalocele may be isolated, or may be associated with other defects and/or chromosomal abnormalities.

Despite the challenges a baby born with an omphalocele may face, there is much hope for them!   We are here to inform parents and members of the medical community that our children are survivors, and with appropriate treatment, they can go on to live happy, healthy lives!

Join us in spreading omphalocele awareness!   Wear black and white, the colors of the MOO's - Mothers of Omphaloceles, to show your support this January 31st!   Help us reach out to families of O babies everywhere, so that they will know they are not alone, and help us spread the word that omphalocele is a treatable and survivable condition."

Houston and Omphalocele Update

Ah, it's nice that the O has taken the back seat on this blog and life of a toddler, pregnant woman and her husband have taken the driver's seat.  But since the Squirrel is and always will be an "O baby" we might have the occasional update to share.  

We headed to Houston on Tuesday for our Wednesday morning appointment with Dr. Cass, Harper's surgeon.  We hadn't seen Dr. Cass since surgery in July and we'd put her follow up appointment off a little longer than we should have but no harm done.  With no prompts by the medical team, Jared and I just assumed that we would be released from services and back to normal life after this appointment.  Um, not so much.

Here's the long and short of it.  Dr. Cass was happy with Harper's stomach and progress she's made.  He was very pleased with her scar and bellybutton.   Harps does still have a pretty large bulge on her stomach (it almost looks like a very large hernia) when she strains or sits up from a lying down position.  The muscle wall was brought together and the fascia on each side was sewn together during her surgery.  However, the muscles at the center of her abdominal wall still seem to be pretty weak and thin.  We're hoping that with time, these muscles will build and strengthen on their own and we'll stop seeing the bulge.  We'll go back for another check up when Harps is two and then again when she's three so that Dr. Cass can keep an eye on that belly bulge.  If there doesn't seem to be an improvement, she'll need to have surgery again around 3 yrs old to adjust the ab muscles.  

So, no.  We aren't through with Houston yet.  But we are totally comfortable and confident with the team at TCH and will proceed in any way that they feel necessary.  Isn't nice to have a doctor you trust?

After driving to and from Midland for Thanksgiving and then sticking the Squirrel back in her car seat for a Houston road trip, I can say that she is OVER the car for now and we're happy to be staying put for Christmas!

Bellybutton

The dressing came off on Tuesday.  Harps still has some of the tape over her incisions which will stay until it falls off on its own but for now, we're seeing glimpses of the new belly!  Also, that goopy stuff from the bandage is peeling off too so she won't have the gray stuff on her stomach permanently. 

I present to you, Harper and The Bellybutton Song.

♪I've got a button and it's not on my shirt.♫

♫ ♪ I've got a button and its not on my skirt. ♪

♪ I've got a button and its right on me. ♫ ♫

♫ ♪ It's right in the middle of my tum-my. ♪ ♫

♫ ♪ It's my bellybutton, yea my bellybutton, yea my bellybutton. ♫

♪ ♫ It's right in the middle of my tum-my! ♪

Home Sweet Home

Had you told us a week ago that we would be home the day following Harper's surgery, I might have rolled my eyes.  Guess what???  We were released from TCH yesterday, headed home and were back in time for dinner.  Am.Maz.Ing!

So let me back up and give the full report.  We got to Houston on Thursday afternoon and checked into our hotel.  We stayed at the Holiday Inn directly across the street from TCH which ended up being so convenient.  The Squirrel wasn't too happy about the drive there.  She slept for about an hour and woke up pretty fussy.  I sang, danced and entertained as best as possible while Jared drove until we decided to make a pit stop for some lunch.  When we got her out of her seat, we realized she'd had a full blow out.  No wonder she was unhappy -  she was covered in poop!  Quick change and clean up, lunch, back to the car and still not happy with the drive.   As you can imagine, this had Jar and me pretty anxious for the ride back home with a tender belly that was yet to come. 

Mom and Steve met us in Houston and we grabbed some dinner.  I think we were all pretty high strung at dinner anticipating the following day.  That night, we had the pack n' play all set up but Harper wouldn't go down.  She would fall asleep for about 30 minutes and then wake up crying.  At about 11pm, we pulled her in bed with us and, of course, she slept beautifully for the rest of the night.  Now her parents?  Not so much sleep on our end. 

The alarm went off at 5am and we were ready to go at 5:45am.  We woke up the Squirrel and we were off to Texas Children's Hospital.   TCH offers free valet parking for 24 hours when your child is having surgery.  What a great amenity!  By 6:15am, we were checked in at the hospital and then the waiting began.  We were in the Surgery Waiting Room with about 15 other families.  Keep in mind, like most of the children in there, Harper's last meal was her bottle before bed.  There were a few fussers but the Girl was a trooper!  She sucked on that paci for dear life but, otherwise, was just sleepy and observant. 

At 7:30am, Harps name was called and we were brought back into the Surgery Holding area.  Harps got changed into the official TCH pj's.  After that, we had almost all of the doctors and nurses that would be with her through surgery come talk to us.  This is where TCH does it right.  As I've mentioned before, I don't feel totally comfortable when I'm not in control.  Each person from the medical team explained what their role would be throughout Harper's surgery, when we would get updates, what the expected timeline of each procedure would be and what would happen following surgery.  How great is that!  Dr. Cass came and checked in with us.  He said he'd been putting alot of thought into Harper's bellybutton and he was pretty sure he had a plan but alot of it would be trial and error. 

Dr. Nguyen was her anesthesiologist.  She was about 5' 2", cute, young and had on a bright surgical hat.  This was perfect and Harper took to her immediately.  When it was time (about 8:20pm), Dr. Nguyen reached out for Harper and she went straight into her arms without a peep.  We watched the team walk off with Harps and it wasn't until she was out of my site that I lost it.   Not too bad, but I definitely needed a full timeout. 

They took Harps back and gave her laughing gas which put her to sleep.  She was then given her IV.  They tried to put in an arterial line about 5 times (hence the bruises and pokes on her hands and feet) but couldn't get the line established.  From what I understand, it's pretty hard to get an A-line in a baby and we think this is what took so long prior to her first incision being made.  She was then put fully under and they put in her breathing tube.  The anesthesia team used a sonogram to go between the planes of her muscles and numb all of the nerves around her abdomen.  They started with the first incision at 9:15am.  From there, Jared, Mom, Steve and I kept busy by playing Words with Friends, playing Hanging with Friends, going to get food and trying to stay busy. 

At 11:30am, we got the call that Harper was out of surgery and we could go back to recovery to see our girl.  Jared and I headed back and she was just coming to when we walked up.  Whew!  She was one unhappy girl!  You could tell she was really confused and pretty out of it.   The nurse put her in my arms right away and we were able to sit down, rock her and get her calmed down.  The breathing tube left her thoat sore and sounding like a lifetime smoker (she's still a little raspy today).

Dr. Cass came in to give us the report and was practically skipping!  He said she did amazingly well.  He really didn't have to mess with her organs at all and her liver basically was able to be slid out of the way.  Dr. Cass brought her abdominal muscles together over the organs, attached them together and then spent a good deal of  working on that bellybutton.  He drew us a little diagram of what he did and said it was about as good as any bellybutton he'd ever made.  That's also when he told us that she'd done so well and everything had looked so good going in that he thought we'd probably get to head home the following day. 

Harper downed 5 oz of Pedialyte, got a good dose of Lortab (just like Vicodin) and then passed out in my arms.  It took a couple of hours to get a room so we hung out in recovery during that time.  We watched all of the kids coming in from their surgerys and that anesthesia is just not pleasant!  They didn't have a room on the general surgery floor so our room was on the Pediatric Neurological floor.  It was nice and quite up there and our nurses were rockstars.

Harps was pretty listless for the rest of the afternoon and just wanted to be held.  The anesthesia turned her bright red while it was wearing off so the girl looked more like she'd sat beachside too long.  We kept her drugged up and at 5pm, she woke up ready to get some energy out.  She was still pretty loopy but she was trying to pull herself up to stand.  For a couple of hours, she'd wake up, play hard for about 5 minutes and then pass out completely.  She even managed to eat a little dinner that night.

Jared and I were both going to stay the night at the hospital but since Harper was clearly wanting to be held and the pull out bed was about the size of my dorm bed from my freshman year at Texas Tech, we made the call that Jared would stay at the hotel and I'd sleep with the girl.  She slept with me through the night and was pretty fitful as the drugs would wear off but another dose would put her back to sleep.  The team had to come in and check her stats every 3 hours but we made it through the night. 

The next morning, Harps woke up and was totally herself again!  She was up, moving around and, with the exception of her bandages and IV, you wouldn't have known the child had just gone through major abdominal surgery.  They say children are resilient but this was ridiculous!  I wish I could pop back that quickly after a C-section! 

We were discharged at 11am and on the road back home.  We gave Harper her Lortab before we got in the car and she was out for the entire drive from Houston to San Antonio. 

It was nice to be home but we were exhausted!  Thank you Pam, Cindy and Martha for the fabulous dinner - definitely a gift to not have to worry about food when we got home.  Harper got really fussy and sore last night just before bedtime and then woke up from 10pm - midnight.  We are giving her the Lortab every 6 hours as needed so today we're trying to stick with Motrin through the day and Lortab in the evenings and through the night.  We can take her bandages off on Tuesday but the incision tape will stay on until it falls off on its own.  I'll post some pictures as we start to see progress.  We have to keep the area dry until Tuesday so it'll be sponge baths until then and we're keeping her in loose dresses.  If you see us over the next couple of days, please excuse Harper's greasy hair and lack of bloomers under her dresses and please excuse her parent's dark circles under our eyes!

We had such a great experience at Texas Children's Hospital and are SO happy we made the decision to go with the slow process of the compression wrap over the last 9 months as opposed to a series of surgeries right away.  We would recommend Dr. Cass to anyone and everyone!  Thank you again for all of the prayers, positive thoughts and support as we lead up to surgery. 

Now, time to start life, post-omphalocele!

Thumbs Up Thursday

Thumbs Up for our AMAZING family and friends!  I can't help but devote this week's entire Thumbs Up Thursday to each and every one of you that has called, texted, emailed, posted comments, written cards and letters and stopped by to let us know that you are thinking about and praying for our Harper-girl as she gets ready for Friday.   And then to open our front door this morning to find a basket filled with little treasurers, cards, bible verses and words of encouragement!  Oh my, we are overwhelmed with gratitude. 

As we head towards Friday, we can't help but feel anxious and scared.  We know Harper is in the BEST of hands and that the preparation she's had over the last eleven months has made this surgery as low risk as it could possibly be.  If I haven't responded to you over the last week, let me apologize.  We've tried to keep busy and keep our minds off of Friday but please know how appreciated your words have been and that they haven't gone unnoticed. 

We head to Houston today.  We will check Harper into Texas Children's at 6am on Friday morning.  Her surgery is scheduled to begin at 8am and surgery is expected to last a couple of hours.  I will try to keep the blog updated as we get news on Friday.  I ask that you continue to cover Harps in your prayers for a successful surgery and a quick recovery. 

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
-Joshua 1:9

Peek into PT

I often get asked about what Harper does in physical therapy.  I thought I'd show you the latest session.  We're working on strengthening her core muscles since her omphalocele has caused delays in anything that takes lower abdominal strength.  Its amazing to think about how crucial those muscles are. 

Crawling Practice - getting her knees up is a challenge

You can see Elaine, who has worked with the Squirrel since we left the NICU.  We love Elaine and she is SO good with kids.  She takes a look at how Harps is doing each week and then adjusts what we're working on accordingly.  We work for 45 minutes - 1 hour and then Jared and I work with the Girl at home. 

Swing - works on balance and abdominal strength

We've increased our PT sessions to weekly over the last month and leading up to surgery since Harps will, most likely, have a small window of time where she's not able to do as much.  She'll be able to start back to work about two weeks post-surgery.

Can you guess what her favorite activity is???

It might look like play but each activity has strengthening or skill exercises involved.  And let me tell you, the this Squirrel is always up for a GREAT nap after a hard session of PT!

Rody Horse - Works on balance and coordination

Pre-Op Report

We just got back from Houston for our last visit before the Squirrel's surgery and, man Oh man, was it good news!  Dr. Cass was so pleased with her omphalocele and said we are all systems go for July 8. 

With each trip we've taken to Texas Children's Hospital, news has gotten better and better and this was certainly no exception.  Since her belly is lookin' so fine, he anticipates surgery should now only take about 2 hours.  And as long as she and we are comfortable, she should only be in the hospital 2 days and then will be ready to come home - wahoo!  Dr. Cass said she'll be ready to start PT up two weeks after surgery and that she'll probably even be able to swim a week afterwards!  Can you even believe it???  What an amazing report!

So here's the medical details.  First, Dr. Cass will open up the stomach.  Since her liver sits where her O is, they might have to spend a little time dissecting the skin from the liver.  He also anticipates that there are some umbilical remnants left over that will need removing.  Next, they'll tuck all of the organs in and connect the fascia together.  This will bring together the stomach muscles that are currently splayed.  The last part of the surgery will be spent closing her up and making Harps that long awaited belly button.  Dr. Cass is hoping they can bring the skin down far enough to where a belly button usually resides but it might sit a little high due to the way her O has healed.  They'll use dissolvable sutures so we won't need to return to Houston immediately.  Instead, we'll be able to send Dr. Cass pictures through email so he can check up on the Squirrel.  We'll head back about 3 months after surgery so Dr. Cass and his team can check things out. 

We are so thrilled but, as to be expected, are still awfully anxious.  We know that Harper is in the best hands and we feel 100% confident with the team surrounding her.  We ask for your continued prayers as we lead up to the big day for Harper's health, peace of mind for us and the knowledge and skill of the medical team. 

Bring on that belly button!

via

First Freckle

Do you see it?



Look a little closer, it's there.



Ah, there it is! The first freckle.


It's not too often that one can say, "See that? That's was my very first freckle." I noticed this little one about a week ago. My first thought was, "Oh how cute! Her first freckle." That was quickly proceeded by, "Wait, a freckle? Is that weird?" Within five minutes, it had turned into "Oh no, maybe I haven't been diligent enough with the sunscreen. Could this be the first signs of melanoma? The sun is a totally different sun than I grew up with. Now it's taking it's toll on my 10 month old!!! DAMN YOU SUN! What have you just done?!?!?"

Okay, so I had a new mom freak-out. Or what I like to call a "first-timer" - you know, those overly protective-wouldn't make sense to a sane person-let's hope I don't think like this for any future Meabon babies-thoughts that go through your mind with your first baby.

After I talked myself down from the ledge, I went into my other crazy brain mentality. I am one of those people that goes through life stupidly scared. I think the masked man with a knife is hiding in every corner of my house to get me. I sleep with mace and a baseball bat. And what would the intelligent thing for a scaredy-cat like me to do? Why watch murder investigation shows on tv, of course! I love Investigation Discovery Channel, 48 Hours, Dateline Investigation and I secretly wish I was Aphrodite Jones. So when I saw that little freckle, I disturbingly thought, "Well, at least she has a distinguishable marker now." I think I've been following the Casey Anthony trial a little too closely lately.

But, here's the beauty in this sick mentality. I totally didn't register that (hello!) her belly would be her distinguishable marker. It wasn't until a couple of days later when I was changing her wrap that it hit me. I just don't think about Harper's stomach and the fact that it is different. Her omphalocele is as much to me a normal part of her like her arm or her nose. I can only hope that Harps has this lack of self-consciousness about her body. I pray that she will grow to see her scars as a sense of pride in the blessings that God gave her in life.

I recently heard a statement that I love and I think applies with my little Squirrel - she's a child that God smiled on.




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We have a date!

Harper's surgery to repair her omphalocele has been set for Friday, July 8.  I'll give more details on the surgery itself once we get back from pre-op in June.  Please keep Harper's health, her worried parents and the medical team in your prayers as we lead up to July 8.

Thank you for all of your love and support over the last year!

Omphalocele Update

***Warning: omphalocele picture below

We made a trip to Houston this week to see Dr. Cass, Harper's surgeon. We've figured out that the trick is feed her right before we load her in the car and to leave just as she's suppose to go down for an afternoon nap. Harps fell asleep about 30 minutes into trip and woke up about 10 minutes before we got to our hotel. I think this goes back to the fact that she'll nap anywhere except her crib...of course.

Jared had some work to do in Houston so we ended up being there for a few days and got to have lunch with my camp friends Amy and Sarah. Sarah's little girl is about to turn one and Amy is having a baby girl in about two months. I see V-day reunions in our future!

Our appointment was early on Wednesday morning and Dr. Cass was very happy with Harper's progress. He liked that beautiful pink skin! We're going to continue the compression wrap (and will until she has surgery) but since she has so much new skin growth, we can stop using the silvadene. Instead, we'll apply over-the-counter bacitracine until the skin is complete and then we can just use an ace bandage to wrap her. We'll head back to Houston in early June and we should be able to schedule surgery for early July. Surgery will consist of repairing Harper's abdominal wall and then making her a belly button. Since her skin has most likely adhered to her liver, they'll also have to detach it during the process. Should her new belly button need some cosmetic repair, she might need to have surgery again later in life but this wouldn't be until she was 6 or 7. Otherwise, we should be set after July! We were putting on the bacitracine tonight and Jared read the label - "for minor cuts and burns". I am so thankful that her exposed wound is now "minor". God is good!

Here's Harper's O tonight:








We were also able to meet Elisabeth, a fellow O mom who's son Lincoln was born just before Harper. While I hate that we had the chance to meet since Lincoln is back in the hospital, it was nice to be able to hug the neck of someone whose story I've followed so closely. I ask that you continue to keep Lincoln in your prayers.

We made it home through a nerve racking drive in the freezing rain on Wednesday. We weren't as lucky to drive over nap time but the girl did pretty well on the way home.

Unfortunately, Harper's had a huge reflux flare over the last week and a half. She's always been a big spitter-upper but it's never bothered her before. She's now clearly bothered by the reflux and has started cutting back on her milk intake. We're working with our pediatrician to see if we can get it under control. Since she has a funky gastrointestinal system as it is, Dr. McCray wants to see if we can avoid meds but I have a feeling meds are in our near future. I am not a fan of hearing my baby's stomach growling but seeing how the solution to the growling hurts her. I'll keep y'all updated on that fun situation.

Holy Shrinking Omphalocele Batman!

**Warning: Omphalocele Pictures Below**

I hope everyone is having a very merry holiday season! The festivities have begun in the Meabon household.

On Friday, Harper attended her Honey's Bible Study Christmas Party. These fabulous women have been prayer warriors for Harper since early in my pregnancy and it was such a pleasure to have Harper meet them.

This weekend, Harper had her first slumber party at Grandy and Honey's house. My dinner club has a progressive dinner party each year and our house was appetizers and dinner. Harper didn't want to stick around for all of that boring adult stuff so she packed her bags and headed out for the night. She had a brief 15 minute meltdown but otherwise did great. She slept like a champ for her grandparents and woke up giggling and happy. I'll try to post pictures from the progressive dinner...well, at least the ones from the beginning of the night. I'll save some embarrassment to everyone and Dance Party USA might not make it on the blog!

I should be taking more pictures but we have a slew of holiday festive wear in Harper's closet. We've been switching into different Christmas gear every day - here's Harper modeling some of her sparkle wear.


Yesterday we had a Christmas play date with two of Harper's best friends, Field and Anabelle, and her new friends McClain and Hudson. Unfortunately, McClain was napped out when we got the group photo together and Hudson isn't set to arrive until next week. That's okay though - the group is headed to see Santa on Thursday so hopefully we'll get another group shot then...well, minus Hudson.



Field was into that bow. But then again, that's what I get for making my daughter a bow head.

I wanted to share one of my best Christmas presents this year - a shrinking omphalocele! Look at the size of that sucker! It started at about the size of a grapefruit and now looks about like a kiwi. The pretty new skin is showing through and the only original scab is the dark area which was her umbilical cord. This is hanging on by a thread and should fall off any day now. I'm one proud mama!






We have lots of visitors coming for the holidays over the next two weeks but we'll miss Uncle Brentie who is headed to Bali tomorrow for the holidays. I hope he brings us back a suntan - we'll miss you Brent!