Monday, December 26, 2016

Emma's Surgery #2

Emma had surgery earlier in April to remove her extra ureter and reconstruct her right kidney.  Her urologist hoped that after that surgery, Emma's reflux would eventually diminish on its own as she grew older.  Emma had four infection-free months, but then developed infections again in August and September.  Both were severe kidney infections with high fevers, so we knew that she was going to require more surgery.

We took her to the hospital for a VCUG; a test where they ran dye through her urinary system to watch how everything flowed, and found that her reflux had worsened.  So we scheduled a second surgery on December 6th to have her ureters re-implanted into the bladder wall, which we hope will eliminate her urinary reflux for the rest of her life. Her surgeon wanted to perform the surgery laparoscopically and thought that it would take less than 4 hours.  However, she found so much scar tissue surrounding Emma's bladder and ureters, she had to cut open Emma's bladder and perform the surgery from inside the bladder wall. It took 5.5 hours, and although Dan and I didn't handle the extra time well, Emma did fine throughout her surgery.

Emma doesn't have a normal bladder - it is larger than it should be and she has to work harder to fully empty it. However, her doctor said that there is still an 80% chance that this ureter re-implantation surgery will be successful in eliminating her reflux permanently.  There are several situations that could cause the surgery to eventually fail, and some of them are determined by Emma's bathroom habits.  Specifically, if she holds her bladder longer than she should and allows it to fill to capacity, the pressure could push the ureters back out of place so that reflux can occur again.  From what we understand, if the ureters are pushed out of place even once, they won't go back on their own and Emma will require surgery again to re-implant them. So we are keeping her on a regimented diet and potty schedule. We are praying that nothing will cause the surgery to fail and that Emma will never have reflux or infections again after all she's been through this year!

We expected Emma's recovery to be similar to her last surgery recovery in April. It was about twice as tough on her and the rest of us, though.  Maybe it was because it was her second surgery in a year, or because she is older now, fully potty trained, and more upset about all the aspects of recovering from bladder surgery.  Regardless, we spent more days and nights in the hospital, and had a harder time getting Emma to comply with her at-home requirements. She had no appetite for two weeks, so she lost several pounds, which made her weaker (and whinier). It's three weeks later and she still isn't feeling like herself yet, although we've had much better days recently.  We are very grateful for everyone who has prayed for Emma and us! God kept her safe through her surgery, and he has sustained us through many tough days and nights.

Children's Hospital of the King's Daughters (CHKD) has been a fantastic hospital through all of this.  We are grateful to have access to excellent doctors and a top-notch healthcare facility in Hampton Roads. We met many parents who drove hours to bring their children here.  They receive toy donations from several stores, so Emma usually receives a new stuffed animal when she checks in for surgery.

They also have a great toy room for the kids to play in while they wait for surgery.  It really helps to take Emma's mind off the fact that she can't eat or drink for hours beforehand.

They have several cars, bikes, and wagons, and will let the kids choose one to ride in back to the surgery room.  Emma always opts to go back kicking and screaming at the top of her lungs, though.

Our parents are such blessings to us, and have spent many hours in the hospital waiting room with us this year.  

Sleeping peacefully right after surgery.  It took quite a while for her to fully awaken, which turned out to be a blessing since no one had a moment's peace once she woke up. Ha!

I found the perfect balloons for Emma to wake up to! My Little Pony and Paw Patrol!  She doesn't pay much attention to balloons, normally, but they are her favorite thing to see when she's waking up from heavy drugs.

We also bought her some Paw Patrol toys to play with, but she just couldn't stay awake her first day in the hospital. I was so glad that she got some rest, because all the rooms at CHKD are shared, and we had the saddest infant next to us who cried for hours non-stop that night. Emma was still able to rest through most of the noise, though.

On her second day at the hospital, Emma's doctor insisted that she get out of bed and walk. Dan took her to the toy room and made the poor girl hobble a few steps like a 100-year old woman before he would take her back to her bed. 

It's this poor woman's full-time job to help the sick kids have fun at the hospital. Emma is making sure she earns her salary.

Emma was in the hospital for 4 nights. Almost every night at 2 a.m., the nurses decided she needed to be stuck with needles, and of course she couldn't sleep for hours after that kind of trauma. So our laptop and DVDs came in handy between 2-5 a.m.  We tried to keep the volume low for the sake of our room neighbors.

Emma had lots of visitors. Her Grandma and Grandpa came every afternoon, her teachers from school visited one day, and Hallie came to see how her sister was doing. I was a little too nervous about germs to allow Hallie to spend to much time at the hospital.

Emma became more and more anxious each day we were at the hospital.  Every time the nurses and doctors walked through the door, she would have a meltdown until they had left, even if they didn't touch her.  She had been through too many scary, painful things at the hospital, and although she still wasn't doing great by that Saturday, we were so ready to be back home.

Emma was blessed with lots of new toys and books while she was in the hospital! The teachers and students at Dan's school and our families showered her with presents every day. They also formed a meal train for our family and delivered dinners to us for two weeks! We are so grateful for everyone's generosity to Emma and us.

We were hoping that Emma would improve more quickly once she was home, but we had a setback pretty early on. Emma came home with a suprapubic catheter, which exited her bladder near the top and came out through an opening in her skin just below her belly button.  After she was home for a day, she began to experience severe bladder spasms that made her feel like she should go to the potty every 15 minutes.  Her bladder was working so hard that her catheter wasn't even having to drain, which defeated its purpose. We called her doctor, and she had us come back to the hospital to remove the suprapubic catheter and insert a normal Foley catheter into Emma's urethra. This was something that we dreaded, since it meant having "Catheterized Emma" for two weeks. She is not a happy person when she has a catheter in. It's entirely understandable, but difficult to deal with.

Catheter exchange day. It was exhausting for everyone.

We developed a simple routine at home, but Emma fought us about taking 3 baths a day and cried and whined through them. The catheter terrified her.  She would probably have been more comfortable with a snake in her tub. We set her up in a toddler tub in the living room (mainly to avoid having to carry her up and down the stairs several times a day), and turned on the TV, gave her toys, and did whatever we could to distract her during her baths.  But in the end, we just had to give her a lot of tough love, since the catheter and baths were necessary.

Diaper changes were another big deal. Emma wore two diapers while the catheter was in.  We tried not to change her any more than absolutely necessary because again, she was terrified when we had to move the catheter.  Here, we had Emma and Hallie lined up for synchronized poopy diaper changes. I know you're jealous of our glamorous lives.

We would never have been able to survive through this recovery time without the unflagging support of our parents. My parents became Hallie's surrogate parents while Dan and I tag-teamed nursing Emma and working our jobs as many hours as we could squeeze in. Dan's parents came to help us at the hospital and to keep our (slow) momentum going on our kitchen renovation. They are amazing.

So many sweet friends from Dan's school came and delivered meals to our family. Emma's best friend from school, Elisha, came with his mom to deliver a dinner, and stayed to play for a few minutes. Emma was so excited to see him and show him all her toys!

We knew that Emma wouldn't get over the hump and truly feel better until her catheter was out.  That event happened 5 days earlier than scheduled on Sunday at 2 a.m., when Emma called me because her diaper was wet. I helped her go to the potty, then changed her diaper on the floor. I was holding her catheter to the side so I could wipe her, and Emma had a panic attack because she felt me move the catheter. Before I knew it, she had given me a swift kick to the chin! I was so mad, I could've spit, but then I realized that I was holding her catheter in my hand! Yikes! When I jerked back, I had yanked the thing right out!

After I checked to make sure Emma wasn't bleeding or in pain, I ran into our room to wake Dan up and tell him to "look at what his daughter had done." The Foley catheter has a small balloon that rests inside the bladder and is supposed to keep it "locked" inside. Emma and I had managed to pull the inflated balloon right through her urethra. If that doesn't make you squirm in your chair, I don't know what will.  Yet Emma felt fine and she was SO happy to have no catheter!  We considered going to the emergency room, but in the meantime, I ran a bath for Emma and left Dan to search online to see how serious this was.  Apparently, it's not that big of a deal, and the doctor would just insert another catheter.  So we made Emma soak in her tub, drink tons of water, and pee twice before we felt that she was healthy enough to go to bed and not die in her sleep.  By then, it was almost 4 a.m., and we were all exhausted. We called the pediatric urologist who was on-call and he confirmed that we shouldn't worry, and we didn't need to have a new catheter put in. Hallelujah! I will probably never say this again in my lifetime, but that was the best kick in the face I've ever had.

Since then, Emma has improved each day and is almost back to her old self.  She is still thin and tires easily, but her appetite is back to normal, so her stamina should improve every day. We pray each day that God will heal her and allow that surgery to be the last one she ever needs.

This was the same morning after her catheter came out. She suddenly was interested in going outside for a walk, and her smile returned, which was the best thing we'd seen all week. We sure do love this crazy kid!

Thursday, December 15, 2016

Three Months!

This girl. She is such a joy at 3 months old! And so adorably chubby!

Hallie is full of smiles and coos now. She absolutely eats up attention from anyone, and she makes you feel like you're the most special person in her life because she lights up when you talk to her. She looks right into your eyes and talks back to you in baby language.

She is showing her personality now and letting her opinions and preferences be made known!  Forget what I said last month about her sleeping 6 hours at a time at night, because she decided to stop that this month. Oh well, we enjoyed it while it lasted!

She has almost stopped doing it now, but I wanted to record it for my own sake.  Hallie has said her own name almost since birth. I've mentioned how she snorts, grunts, and makes other ladylike noises.  When she is really irritated with us, she furrows her brow, deepens her voice and growls "hallie hallie hallie" at us. It makes us laugh every time!

She is a happy and content baby most of the time, as long as you keep the bottles coming! She cycles through an "eat, sleep, snack, play, repeat" routine all day long.  She naps the longest in the mornings and evenings, and sleeps 3-4 hours at a time at night.  She loves being in the middle of the action and gets upset when she can't see anyone nearby.  She responds to the smell of food cooking, so mealtimes usually involve one of us holding her and feeding her a bottle while we all eat at the table.

She's learning to control her hands, and when she's hungry, she will put her fingers in her mouth to show us where she wants us to put the bottle. If that fails, she flails her arms and legs like she is possessed and inevitably bops herself in the nose and makes herself cry.

This girl can really eat! She loves to be held while she's eating. She also loves when we prop the bottle while she's in her car seat or stroller. Basically, she will accept milk from anyone or anything. She doesn't have the gas/tummy ache issues she used to have now that she's a little older, which is nice.

We picked up a play mat with music, lights, and hanging toys for $10 at a consignment store, and she and Emma both love it. Emma was trying to squeeze in and Hallie was shoving her head away. Ha!

My mom (Nana) discovered the best entertainment for Hallie. She wraps a balloon string around her wrist and when Hallie wiggles and jerks her arms and legs, the balloon jumps up and down.

So. much. fun.

 Emma adores her baby sister and loves to be a big helper. Hallie is absolutely fascinated by everything that Emma does.

Since Emma has a bath every night, it's easy to put Hallie in for a quick bath with her. Emma treats her like a bath toy and Hallie loves watching Emma play. I only put Hallie in for a few minutes, since I want to avoid baby poop in the water.

She gets her own bath sometimes, too. Check out her amazing tummy and thighs!!

Hallie's 4- and 5-year-old cousins, Josiah and Chloe, couldn't get enough of her and wanted to hold and feed her several times at our Thanksgiving gathering. 

When we're working at our new house, Hallie loves to admire our sparkly Christmas tree! 

Showing off her stylish hand-knitted socks from my coworker.  She's doing the cha-cha to show how much she loves them.

 Emma generally hates giving and receiving kisses, but even she can't resist Hallie's kissable cheeks!

I don't think I'm imagining that they have the same face in this picture! 
We are enjoying our little Hallie so much at this sweet age!

Tuesday, December 13, 2016

So Thankful!

We've had so many fun activities during the last month. The Thanksgiving and Christmas holiday season is always packed, but I love all the events and the time we get to spend with our families this time of year.

On Veteran's Day, we recognized my dad's service in the Army with dinner at Texas Roadhouse. They were offering a free meal to veterans that day.

We took Hallie to her first StoneBridge School volleyball game when they made it to the state finals! (Emma was feeling especially saucy that night.)

 The girls' volleyball team won the state championship for the very first time! It was so exciting!

StoneBridge School celebrated Thanksgiving with a Christian Heritage/Jamestown Day at school.  All the kids got to dress up as Pilgrims or Native Americans.  Emma got excited at first when she heard she would get to wear a "costume" to school, but turned adorably cranky when it turned out to be a black and white Pilgrim outfit. Not enough pink.

The school provided some traditional settler food for the kids to try. Emma surprised me by trying several things on her plate and giving them a thumbs up.

Emma and her friend, Amber, checking out the woodworking display

The excavation station, where the kids got to dig up bones and artifacts

Emma and her best friend, Elisha, cracking up before chapel started.

At the end of the day, each class had a Thanksgiving feast. Her preschool teacher is very wise and opted out of the traditional turkey and stuffing meal, since most 3 year olds won't eat it.  Instead, we had chicken nuggets, mac and cheese, fruit, bread, and desserts.

For the second year in a row, we walked through the Christmas lights at Norfolk Botanical Gardens.  They normally only allow cars to drive through, but for five days before Thanksgiving, they allow you to walk along the 2-mile path to enjoy the lights at your leisure.  Dan's parents, my parents, and our four nephews joined us.

We started our 2-mile walk just before the sun set, so we got to see the gardens themselves. It was dark as we walked the two miles back to our car, so we saw all the beautiful light displays in full color.

After all that walking in the cold night air, the kids deserved dinner and play time at Chick-Fil-A!

Thanksgiving was a fun day with friends and family at Dan's parents' house! A couple of the cooks in the kitchen - Pat Bailey and Dan's mom.

 Hallie enjoyed lots of attention from her cousins who met her for the first time!

The kids had a blast together in the game room

The men relaxing after a great meal. Left to Right: Dan's dad, Nas Bailey, Pete King, and my dad.

Kim and Christina King

After the big meal, we took a walk along the trail together. The perfect way to make room for dessert!

Keeping with another holiday tradition, Emma, Hallie, and I joined Dan's family recently to watch the Colonial Williamsburg Christmas parade. Dan couldn't join us because of a school event the same morning.

Left to Right: Dan's dad, Paul and Wendy Jensen, Dan's mom, and our niece, Miriam.

Left to Right: Dan's brother Tim, his sons, Aaron, Josiah, and Nathan, 
Dan's sister Robin, her daughter, Naomi, and Emma

Despite the very cold morning, everyone really enjoyed the parade!

Fun times with my girl

Hallie somehow slept in her stroller through the entire parade, including drum corps, marching bands, and noisy motorcycle and antique cars passing by. I bundle her in this super soft, warm fleece onesie when we're out in the cold, and she can never stay awake in it. I should try it at night!

 After the parade, some of us ate brunch at Panera Bread.

Our family has been getting festive for the holidays!

We decorated our new house for Christmastime, even though we're not living there. It instantly made it feel more homey and we can't wait to move in!

Dan hung lights outside, and I love them!

We celebrated Dan's birthday on December 1st with a BBQ dinner and chocolate cream pie. We sure are crazy about this guy!