A New Life, Take Three

When Ella was born, we said it was the start of our new lives. And then our new life was interrupted by heart surgery. A month later as we left the hospital, we said it was the start of our lives, take two. Our new life was again interrupted with the VUR diagnosis and as we waited on pins and needles for the time Ella needed to have surgery to repair the VUR.

Well, we finally had the surgery yesterday and when Ella's surgeon came out of surgery to tell us how the surgery went, he said it went by the book. Aside from the catheter, IV in her leg, and the bandaged incision, you would never know Ella had just had surgery from her demeanor. She was just as giggly and full of smiles as ever yesterday.

This morning, the catheter and IV have been removed, Ella acts as if she hasn't had surgery at all. She's as playful and happy as ever. We're just waiting now on the discharge orders while Ella naps.

Leaving today, we're starting our new lives again.... take three.

No more waiting

While visiting Mississippi with Amanda, Ella started having fevers and spots returning to her tongue. It was the day before they flew back, so Amanda treated her with Tylenol, Motrin and vigilance. The day of their return flight, Ella's fever spiked at 104.6°F and never dropped below 100°F. I dropped the boys off at Soda & Pop's to spend the night and went to get my girls from the airport. We went straight to Children's Hospital to have Ella checked out.

They took her temp (it was about 101.5°F, I think) and took a urine sample to test for a UTI. The immediate results came back inconclusive, so, since she could keep down fluids and seemed to respond to the Tylenol and Motrin routine, they prescribed antibiotics and sent us home while the cultures developed. We got the results today (after having to do a little arm-twisting of the folks at Children's).

Although they weren't certain exactly which strain she had, Ella was developing what appeared to be a pretty nasty UTI. The antibiotics the ER prescribed should handle it though, but this means we have to meet with urology again and schedule Ella's surgery.

Our appointment with the urologist is on December 9th and they say they'd schedule surgery about two weeks out from there. That puts us right at Christmas time. Oh joy.

Back again and I wish it was somehow related, but good luck anyway

We're back in Children's Hospital. Ella's fever spiked around 103.5°F yesterday afternoon and she was projectile vomiting like Jack used to before his heart surgery. Add a little general fussiness and we decided it was time to make a run to the hospital for the UTI tests. Amanda had a gut feeling this was going to be another UTI and took Ella straight to Children's Hospital instead of going to closer-by Littleton Hospital.

After a brief wait in a waiting room full of rudely, coughing children and their parents, Amanda and Ella were taken back to a room for further examination and testing. Ella got another IV line and the tests came back with a very elevated white blood cell count and indications she did in fact have another UTI. They've re-admitted her and have been battling her fever all night. It's being persistent (at one point it was over 104°F). Urology has been contacted and we expect to see them today at some point. We also expect, based on our last visit, that they'll be recommending and scheduling her surgery this time.

I received word this morning that there is a young Australian sailor named Jessica Watson that set sail yesterday afternoon in an attempt to sail the globe solo. Jessica is 16 which makes the story interesting in its own right, but what caught our attention was the fact that her boat is bright pink and has "ella" all over it.

(Click the image for the full-story)

I wish I could say we knew Jessica Watson or that she had "ella" on her boat in honor of our little girl, but truthfully this is the first I've heard of Jessica Watson (thanks, Alan) and her pink boat named "ella's pink lady." We wish Jessica the very best of luck on her journey and hope that it is as successful and uneventful as we hope our Ella's upcoming treatment to be.

The lottery you don't want to win

Ella Kate has been discharged from the Children's Hospital today. Yay! Yet, as always, good news for Ella is almost always tempered with something less positive.

The bacteria cultures came back today and showed that the bacteria from the UTI that hospitalized her less than two weeks ago was not the same bacteria as what brought us back this time. In fact, the bacteria she had this time is an extremely virulent type that responds to only two different antibiotics. The good news? One of the two antibiotics that this particular bacteria responds to is the one the hospital started her on yesterday. Yay!

Dr. Campbell, the urologist not the cardiologist, finally stopped by to see Ella today and declared her able to go home, but said he because she got this strain of bacteria he expects to see her back again within a couple of months and that if that happens he will definitely recommend we proceed with the surgery at that time. We're hoping for the best and that this course of antibiotics and the new one they've prescribed as a prophylactic will keep her happy and healthy enough to get through the year, but he's not holding his breath.

It's her smile that helps. She's such a good natured baby. The nurses and staff at Children's Hospital were happy Ella was able to go home today, but were also sad to see her go. She brightens up every room she's in.

So it's back home we go. Back to having our whole family under one roof. Back to hoping we can keep our beautiful little girl healthy for as long as possible.

--
Sent from my mobile device

Have I got a story to tell you!

Hi there. My name is Ella Katherine. I was born on April 26, 2009, coming 6 weeks early after deciding I was done staying in Mommy's tummy. When I was 3 days old, Mommy and I were getting ready to go home when a Doctor noticed I had really weak femoral pulses, so decided to be safe and got a scan. It turned out that I had a problem with my heart, called Coarctation of the Aorta. That same day Mommy and I got to ride in a cool ambulance across town to Children's Hospital. When we got there, we talked to a lot of Doctors, who told Mommy and Daddy I needed surgery really fast to fix my heart. The next day I went to sleep and the doctors made my heart work better.

I got to stay in a really cool room in the NICU for almost a whole month. Before the doctors fixed my heart, bloodflow to my lower body was slow, so I got what is called necrosis in my bowels, so I didn't get to eat for two whole weeks! Finally, I got to go home for the first time. I loved being with my 2 brothers, Jack and Josh. Then a couple of weeks later, Mommy and my Aunt Beth noticed my heart scar looked red. I went to the Doctor and I had stitches that were supposed to dissolve but didn't. So the doctor pulled one out. I went home, but still didn't feel good. Mommy took me back to the hospital the next day. Turns out I had developed a pretty bad staph infection in my wound. They had to put me to sleep again and get the rest of the stitches out and redo my scar. I stayed in the hospital again for another week. I missed my bed and my brothers. We finally got to go home!

Just last week I started feeling bad and running a high fever. Mommy took me to the Doctor and he couldn't figure out what was wrong with me. We went back to the hospital and they did a bunch of tests on me. I had a urinary tract infection, but the doctors thought something else was wrong. They did more tests and found out my bladder wasn't working right. I have what is called VUR. It is a reflux disease where my bladder pushes my peepee back into my kidneys. I have level 4 to 5, which is the worst kind to have. My kidneys can get really sick if I don't get my bladder fixed. The doctors wanted to wait a little while before doing my surgery so I can get bigger and hopefully a lot healthier. Sometime next year I will probably have my surgery to repair my bladder and kidneys. I know the doctors will take good care of me. Please ask God to keep me safe and let me grow big and strong so I can play with my brothers...
they are so much fun!