Hospital Day #8

Today was a pretty uneventful day for Lily. She spent lots of time snoozing on Grandma's lap and looking around her room.

The pediatric urologist stopped by for a visit today to discuss Lily's post-hospital treatment. The doctor is taking a wait-and-see approach to Lily's case. She will be sent home from the hospital with a prescription for a low dose of amoxicillin, which she will take every day for the foreseeable future. The amoxicillin will hopefully keep her from getting any more urinary tract and kidney infections. If she can keep the infections at bay, she will be scheduled for another VCUG procedure when she is 18 months old, to see if her reflux has improved. The overall goal is to wait it out until she (hopefully) outgrows the condition. If she continues to get infections even while on the antibiotics, then we may have to discuss surgery, but we are not to that point yet.

In the next few weeks, she will also undergo a procedure called a DMSA Renal Scan. It involves injecting a radioisotope into her bloodstream, then using a gamma camera to photograph her kidneys. (It all sounds very high tech, no?) The photos will show any scarring in her kidneys that occurred as a result of this most recent kidney infection and provide a baseline for measuring any future scarring that may occur. It is an outpatient procedure that should be simple to complete.

Only two more days until she is released!!

Happy One Month Birthday to Lily!!

It's hard to believe that Lily is 1 month old already. She's spent an unfortunately large percentage of that month in one hospital or another, but you'd never know from her sweet attitude, attentiveness and (gasp, dare we say it...) even patience! Her sweet personality has grown almost as fast as her legs, arms, strength, weight and cute cheeks!

Happy 1 Month Birthday, Lily Bean! We LOVE you!

Hospital Day #7

Seven days down. Only a few more to go! This picture makes her look like she's in baby jail. It's just her nice hospital crib!

Today Lily had her VCUG procedure and she did great. We went down to radiology at 10 a.m. Lily got the necessary catheter, drank a bottle, and only fussed a little bit. Then she promptly fell asleep. Dr. Lee said she was easily among the most stoic and relaxed newborns he'd seen. (Dr. Lee obviously didn't recognize that Lily was the same sweet angel now as the explosive screaming hell-raiser he'd battled with two days earlier during an ultrasound.)

Dr. Lee began the VCUG with 65 cc's of an iodine contrast solution. Once her bladder was full, they began to take several x-rays of her abdomen. The images revealed that BOTH of Lily's ureters on the right side were refluxing into her right kidney when her bladder contracted. Fortunately, the solution that refluxed into the kidney when the bladder contracted also drained right back out afterwards. This was one thing Dr. Lee wanted to see - if one of her ureters contained an obstruction it might not have drained promptly and would be more damaging. Luckily, the kidney drained just fine.

The VCUG also indicated a lesser degree of reflux in her left kidney, something that will likely clear up as her ureter grows and the valve gets stronger. Kidney reflux is graded on a scale of 1-5. The reflux on her right kidney was graded a 4. The reflux on the left was graded a 2.

Now we just have to wait until we meet with a pediatric urologist after Lily is discharged to see what our next move is, because the right kidney will require some ongoing medical care. This will likely be with preventative antibiotics, but possibly more.

Hospital Day #6

Today was a good day. Very, very hectic but good. Lily continues to do well and feels fine.

We had to move to a different room, which was a pain but actually a good thing. She had been in an intermediate care room, which is reserved for children with serious medical needs. Today, they moved us to the more "general" pediatric wing, where kids with less serious issues (think tonsillectomies and rashes) are housed. These kids are also LOUDER than the kids in the intermediate care wing, but we can handle it.

My mom spent last night with Lily. I know Lily enjoyed having her grandmother there but I think Grandma was beat by the end of the night. Ethan is going to spend the night tonight to give her a break.

Aunt Michaela also spent time with Lily today. It was SUCH a big help having her there while I took my mom home to get some rest and also ran around the hospital on errands. Lily was perfectly content to sleep in Michaela's arms for FOUR hours. That's one of the longest naps she has ever taken and she sure looked comfortable in Michaela's arms!

Tomorrow is Thursday and that means we only have a few more days until she gets to come home. I really don't know how parents with chronically ill children do it. My hat is off to them!

Hospital Day #5

Lily continues to get better with antibiotics. She acts like nothing was ever wrong! Her Grandma arrived today and immediately came to the hospital to get her hands on Miss Lily!

We found out today that she had a urinary tract infection that likely started all this. In infants as young as she is, a UTI is often caused by an unusually-shaped urinary tract, so they did an ultrasound on her abdomen to make sure there were no physical defects in her bladder, kidneys, etc.

Well...our daughter is already an overachiever. It was discovered that she has not one, but TWO ureters extending from her right kidney. She's packing a spare. The ureter is the tube that carries urine from the kidney to the bladder. Each kidney should have only one. Lily has two on her right side. That right kidney also has a condition called hydronephrosis, which is a swelling of the kidney, usually caused by inadeqate, or reversed, drainage. The antibiotics she is receiving will cure the UTI, but because of the dual ureters, she will need to visit a pediatric urologist upon release from the hospital to treat the hydronephrosis and prevent it from recurring.

The pediatrician, after consulting with the urologist, has ordered an X-ray procedure called a VCUG, which will show the doctors if the dual ureter shape and attachment points are causing her to have kidney reflux, where urine in her ureter is being passed back into her kidneys. This is probably the case, and is the likely source of her Enterococcus infection.

While getting this infection has been very hard on all of us, our doctor says it may have been a good thing, because without it, we may not have discovered the dual ureters or the kidney condition. Often, kids with this problem have UTI after UTI, and the scarring that can occur with it, for a very long time before doctors discover the true cause. We found out when she was three weeks old and I guess that is one of the silver linings of this whole process.

Hospital Day #4

Ethan has spent the last two nights at the hospital being extra vigilant about Lily's care. He is SUPER dad!

The vein that held her IV "blew" yesterday so they had to find another vein. Baby veins are very tiny, as you can imagine, and they had to stick her 4 times before they found a usable one. Poor, poor Lily. She was NOT happy.

One thing she IS happy about is her Grandma coming up from North Carolina to help out with her hospital stay. Grandma makes everything better!

Hospital Day #3

Today we found out that Lily has a bacterial infection in her blood called bacteremia, in this case casued by a bacteria called Enterococcus. It is similar to strep bacteria and makes her very ill with a high fever. She could have contracted it a number of ways. We may never know exactly how she got it.

Her treatment is a heavy regimen of antibiotics, administered via IV. She will be in the hospital for 10 days with an expected release date of Monday, November 24.

Fortunately Lily's fever broke on Friday as soon as antibiotics started and she seems to be feeling better. Unfortunately, no amount of "feeling better" will get her released from here before her 10 days are up.

Ethan and I are taking shifts at the hospital so Lily doesn't have to be alone. We know she has a long week ahead of her, but Ethan and I are happy and relieved. She is getting the proper treatment from good doctors and since her condition was discovered early, she is expected to fully recover.

Still keep us in your thoughts! Jennifer

Hospital Day #2

We found out some test results today. Lily does not have meningitis (phew!), the flu, RSV or any other kind of viral infection.

Now we're just waiting for the results of her blood cultures.

A Very High Fever

Lily woke us up at 2:30 a.m. on Friday, November 14. She was burning up. A quick temperature check showed her temp at 101.6. Anything over 100.4 for a newborn is considered very, very bad. We took her temperature again at 3:30 and decided to take her to the doctor as soon as their office opened.

When we got to the peds office, her temp was at 101.9. The doctor examined her and decided to send us straight to the hospital. Obviously, this was NOT the result we expected.

We took Lily to Inova Fairfax Hospital's Children's Hospital. With a fever that high, there was obviously an infection somewhere, so the doctor's set about finding out the source.

Poor Lily had blood drawn, as well as spinal fluid and urine, to rule out things like meningitis, flu, RSV, and any other viral or bacterial sources. We were told that she would spend a minimum of 48 hours in the hospital, so we are hoping to go home on Sunday.

Lily was put on heavy duty IV antibiotics while we waited 48 hours for the results of the blood and spinal fluid cultures.

I spent Friday night at the hospital. Neither of us could bear to leave her, but they only have space for one parent to sleep over. It is so heartbreaking to see your child in pain and 1) not be able to do anything about it and 2) not know what the cause is.

We feel like we are getting very good care here. We are just playing the waiting game right now, hoping for some news...

Please keep Lily in your thoughts and prayers...

Happy Birthday to Mom! [From Lily]

[Dad is posting this for Lily, since she hasn't learned to type yet.]

Happy birthday to my mama! I got her my first gift and a card but she tells me that I am the greatest gift she could ever receive! Grandma Charlotte even watched me while she and dad had a celebratory dinner out.

Grandma Visit #2

Ethan's mom flew in today from Idaho to visit Lily. Seems like a long trip but Lily's pull is immense! Lily is Dan and Charlotte's very first grandchild, so needless to say, they are over the moon.

Charlotte was also a wonderful baby holder, which seems to be the favored job of Grandmas. She was a big help around the house and even went on a walk with Dixon. Thanks Grandma Charlote for all your help.

We can't wait to see you (and with Dan too!) at Christmas!

Grandma Visit #1

My mom came to visit this week. She could not wait to get her hands on Lily. Lily is her first granddaughter, so she fully outfitted her in pink, pink, pink.

My mom has been a huge help, mainly because no one soothes a fussy baby like a Grandma. She was also here when we took Lily to the pediatrician for her 2-week check-up. Lily has gained almost 1.5 lbs since her last appointment. She weighs 8 lbs, 8.8 oz.

Grandma and I also took Lily shopping. We hit Target and Kohls--had to get Lily familiar with our favorites stores!

Lily loves her Grandma and can't wait for her to come back and visit soon!