Xena: Warrior Princess

My mom has decided that Ella is more than just a princess, she’s a warrior princess.  Thus, she has started calling her Xena.  It’s funny because I had a roommate in college who loved that TV show.  I thought it was ridiculous at the time, but now I wish I had paid more attention.

So we headed out to Cincinnati on April 25th.  We decided to fly there and drive back, since we didn’t know how Ella would feel after her surgery.  The flight was good and we got into town around 8:30.  We had to be at the hospital the next morning at 9:30 and surgery was scheduled for 11:00.  Unfortunately there was a hang-up somewhere and Ella didn’t get back into the OR until closer to 1:30.

I have to enter an anecdotal story about Ella because it’s something Joe and I have laughed about time and time again.  In case you didn’t know it, Ella loves food…and she has a little bit of an attitude.  Throw a lack of food in there and the attitude comes out more than ever.  So, like any procedure, Ella couldn’t have anything to eat or drink before the surgery.  She was NOT happy about this!  Finally, when we were getting ready to take her back to the OR the nurses were going to give her a little relaxing medicine.  I don’t remember the name, but it basically calms her down before going into the OR.  The big perk to taking this medicine was that she could have water afterward.  Ella was so excited!  They finally brought in the medicine, but all they let her drink was a little medicine cup of water.  Oh boy did we hear about that!  “What’s wrong with this place?  Why don’t they have big cups around here?  Where are all the big cups?”  And the list goes on.  I know it sound mean, but it was so funny.

Ok, back to the surgery, Cincinnati Childrens Hospital is great because they let both Joe and I go back into the OR with her and wait next to her bed until she goes to sleep.  It’s never easy to leave her in that room, but at least I know she wasn’t scared and upset when she went under.

The procedure took about 2 ½ hours.  Both doctors came out and talked with us and told us how things went.  It was all pretty cut and dry (which is what we had prayed for).  Luckily Ella’s tummy is pretty clear from boo boos right now, so they didn’t have to navigate those.

Ella pretty much slept all day Thursday.  She woke up in spurts, but all in all she just laid in bed and slept.  She did wake up begging for food, but unfortunately was on a liquid diet.  The chicken broth and jello didn’t really satisfy her appetite, but it was better than nothing.  The plan had been for me to stay at the hospital with Ella and Joe would go back to the hotel, then Friday night we would switch.  Ella informed us that she wanted daddy to stay at the hospital and mommy was going back to the hotel.  I didn’t argue with her…I had hardly slept the night before the surgery and was secretly looking forward to a night at the hotel to actually sleep.

The next morning Ella woke up ready to face the day…and ready to eat.  I arrived around 8:00 and met the nurse in the hall.  She informed me that Ella had already said that she was “So, so hungry!”  The doctors came by for rounds around 10 and one of the first things she asked was, “When can I eat.”  Luckily they gave her the all clear to start eating regular food.  She enjoyed some scrambled eggs and sausage.  By this time she was done with being in her jammies, so we got her in some real clothes, got a wagon for her and she came down to the cafeteria with us to eat lunch.  She even got up and walked around a little bit.

Ella fell asleep in the wagon while we were eating lunch.

Friday afternoon they started the feeds through her new belly button.  They have to start them really slow, then increase every 3 hours until her body is able to tolerate a full feed.  The whole process took around 20 hours.

Ella only got upset about her new belly button 3 times the whole trip:  1) When she first realized that she has a tube coming out of her tummy.  Once we explained that this was the new fancy belly button we had told her about she was ok.  In hindsight I should have taken her online and shown her pictures.  2)  When they were hooking her up for the first time.  She was afraid it was going to hurt like getting an IV.  When she realized that she couldn’t feel it she was ok.  3)  The poor girl didn’t understand that the initial 20 hour feed was just a one-time deal.  She thought that she was going to have to spend the rest of her life hooked up to a pump all day and laying in bed.  She was very happy to hear that she’s only hooked up overnight and that by the time she wakes up in the morning she’s unhooked again.  The morning after her first full-night feed she woke up and said, “Mommy, you were right!  I’m not hooked up anymore!”

Saturday morning Ella amazed us all.  She was pretty much back to her old self, and was only using standard Tylenol to ease the pain.  The doctors couldn’t believe how well she was doing, and agreed that she was well enough to go home earlier than expected!  Joe and I were in shock!  So instead of the standard 3 or 4 nights in the hospital, Ella was only there 2 nights.  We were so happy to get back to the hotel!

Here's Ella as we were walking out of the hospital.  Doesn't she look great for just having surgery!

 Since Ella was being such a super star with everything, we gave her (and Joe) a special treat of going to see the Cincinnati Reds play.  We love baseball games and have seen the Reds a few times when we’re in town.  Ella loved her cotton candy and snow cone, and she loved sharing the huge nachos I bought.

Here's Ella and I with our hat full of nachos.  The truth is that Joe goes to the games because he loves baseball.  Ella and I go because we love ballpark food.

Here's Ella after the game.  Don't worry about her blue lips, those are from the blue cotton candy and blue snow cone.

Monday we just took it easy around the hotel and got to meet up with some friends for dinner, then Tuesday morning bright and early we headed home.  The drive from Cincinnati to Alexandria only takes us about 9 hours.  It sounds long, but the drive is so beautiful through West Virginia.  Ella played and watched DVD’s and was a trooper the whole trip.

Both Joe and I have been shocked at Ella’s speedy recovery!  We firmly believe it’s the power of prayer that has helped her bounce back so quickly.  One week after her surgery she was back in school and back to her normal self.  Physically her body is doing great and handling the additional calories beautifully.  We feel like she’s already gaining weight and even her teacher says that she looks chunkier!  Hooray!!!

Emotionally Ella continues to surprise me.  I got some great advice from an older EB kid who was about Ella’s age when she got her g-tube.  She basically said not to hide it from Ella or keep information from her.  Be open and honest.  Joe and I took great steps to explain the benefits of her new belly button (mainly that she won’t have to take yucky iron anymore) and to keep it positive.  Ella has fully embraced this.  She gladly tells people that she doesn’t have to take medicine anymore.  She helps me give her belly button a drink (flush it with water) and helps us hook up her feeding pump every night.  She gives herself her medicine and helps keep the belly button in place while I wrap her tummy.  I bought some fancy designed coban (fancy gauze) to hold it in place while she’s at school and Ella loves choosing which color and design she’ll use each day.

Joe and I are far less stressed!  Ella doesn’t eat veggies (except corn) so I have started putting pureed veggies through her tube every afternoon.  She’s still eating normally (except for the past couple of days because the poor girl has a cold) and we now know that her body is getting all that it needs.  I’m so glad that I can now give her the things that I know will help her without the fight of getting her to eat it by mouth.

Thank you all so much for your prayers and sweet cards to Ella.  She was so excited to open each and every one!  We appreciate each of you more than you know!