My Baby Pianist
Saturday, May 29, 2010
We are heading out tomorrow to do our little family photo session, so hopefully we will have some great pictures to share in a few weeks!!
Friday, May 28, 2010
It's funny how so many things can change in one year, but yet so many things are still the same.
http://lauraandwesley.blogspot.com/2009/05/what-rollercoaster.html
Reflux 'R' Us
The sonogram showed that Emma did have two kidneys, they were the right size and shape and in the right position (apparently they move up higher in the abdomen after birth). Then it was off to the VCUG procedure and this one was a little tougher, partly because of our little stinker of a daughter. We had to strip her down and lay her on a table while they inserted a catheter to check her urine and to insert a clear dye that would help identify any reflux. The goal is to fill up the bladder so that the pressure inside the bladder is increased and take pictures as it fills to see if any urine travels back up the ureters towards the kidneys. Well, our little stink-pot kept urinating after they inserted the catheter so they kept having to start over! She did it three times! I guess because it was really the only thing should could do since we had to hold her down pretty still so the doctor could watch and manipulate the machine, so she was showing those doctors and nurses how happy she was about having this done! Finally they got the bladder full enough (we will get back to this in a minute) and we were off to go meet with the pediatric urologist. Overall, Emma did really well and was able to calm down immediately after the procedure. Although she did not want any of the nurses to walk within 5 feet of her after that.
While talking to Dr. "M" (the pediatric urologist) we were shown the pictures and got a great explanation of what VUR really was, how it is caused and our path forward. Dr M guesstimated Emma has having Grade 1 VUR which is the lowest kind, but he couldn't say for sure that it wasn't higher because of the little stinker urinating during the test so much. They weren't able to fill her bladder to the extent that would show the maximum reflux, so she was a minimum of a Grade 1 (on a scale of 1 - 5). For Grade 1 VUR, 90% of the children grow out of it within 5 years, that's the good news. The not-so-good news is that Dr. M thought that because she had a major UTI and because it took us three full days on antibiotics to crack that fever, that it actually caused a kidney infection as well. There are some other reasons as well that would take 3 pages to describe (based on antibiotics that were tested against the infection and the kind that she was given, etc) but he seemed pretty confident that she had a kidney infection as well.
So, Emma will be on antibiotics (more on that in a minute too) for a minimum of 2 years and will be scheduled for a DMSA scan probably next week. A DMSA renal scan is a nuclear medicine test that shows pictures of the kidneys and how they are working. Its a pretty non-invasive procedure but does involve an IV and sedation. It's similar to the VCUG where they will inject a radio-active material into her (her blood this time though) and it will attach itself to her urine and travel to her kidneys. Then it takes about an hour to take a lot of pictures of her kidneys to look for potential scarring. She will be sedated because she will need to lay perfectly still for an hour, and that just isn't going to happen if she is awake. The whole thing takes about 5 - 6 hours.
Assuming that Emma will not have any more UTIs, in 2 years, we will go through another round of VCUG testing and DMSA tests to see if she has grown out of the VUR yet and to see if there has been any additional damage to her kidneys (so this first DMSA will be our baseline to start from). If she has any other UTIs, I think things may change, but we are crossing that bridge if we get to it. This will have an affect on a couple of things as well, like how Emma is potty trained. We will have some more-strict instructions from Dr. M on how we need to do this when we get to that point, and we have to be more aware of things like constipation, which now could be bad for Emma (because it can cause UTIs which could then cause more kidney damage, etc). Any future children that Wes and I have will have a 40% chance of also having VUR, and Emma's children will have a 70% chance of having VUR as well. We talked with Dr. M for over an hour so I am sure there is a lot that I am missing, but that's really the gist of it.
Now onto the study. Johns Hopkins is involved, along with the US Government, in a study that is trying to find the best method of treating VUR. Children with VUR usually take a low dose of antibiotic once a day to prevent UTIs (which is called prophylactic antibiotic treatment). This doesn't stop the backflow of urine, but kills germs in the infected urine that does backflow to the kidney. New research suggests that if a child with VUR has close follow up with the doctor for every illness with a fever, a UTI can be treated early and kidney scarring can be prevented without the use of daily prophylactic antibiotics, and that's what this study is looking at, whether or not children with VUR need to take antibiotics or not. Dr M is leading this study and is one of the Top 5 pediatric urologist in the country so we jumped on the chance to have Emma participate in this study for a couple of reasons. We now have 24 hours, 7 days a week access to a pediatric urologist/nurse, we have additional screening and follow up visits every 6 months to more closely monitor Emma and her VUR and we have someone to call at 3:00AM when she wakes up with a fever and we don't know what to do and if it is VUR related or just something random that we picked up. If we ever go to the pediatrician or hospital for fevers, we now have someone calling ahead, explaining VUR and discussing the path forward with the doctors before we even arrive. We also have the hope that we can help find the best path forward for children with VUR and that means a lot to us given the percentages of our future children and grandchildren having VUR. The study will also cover the costs of VCUGs and DMSA scans, and Emma will get a check for $25 every 6 months haha. That's going right in the piggy bank and she is going to be able to spend that money on whatever her little heart desires!!
I think that is probably enough rambling on for now! Mommy had her freak out day yesterday, so my head is now back on my shoulders straight and we are moving forward with whatever we have to do to help keep our peanut healthy. More to come later when we find out the date and results of the DMSA scan, so stay tuned!!
Tuesday, May 25, 2010
The VCUG test is only about 80% accurate because it has a lot to do with timing. They need to have Emma do exactly what they need her to do within that hour that the test is happening. Based on the statistics from the hospital, about 6 - 8% of the general population has renal reflux, and we have about a 30% chance that Emma has it, which could be worse (at least that's what I am telling myself). She has a higher chance because of having the UTI so young. There are a lot of reasons why someone that is 5 or 6 can get a UTI, but those reasons don't typically apply to someone at this age, which is why the percentage is higher and additional testing needs to be done.
If it ends up that Emma does in fact does have reflux, it will be graded on a 1 to 5 scale; where 1 is slight and 5 is basically severe reflux that overfills the kidneys (I'm pretty sure it's not this serious). There isn't any sedation involved with is both good and bad because it's not really necessary, but it means that we are going to have one angry baby because of all the tests she has been put through lately. The sonogram takes about 45 minutes, and the VCUG test will take about an hour.
Please keep Emma in your thoughts on Thursday morning since she is going to have quite a rough morning.
On a side note, we did find out something interesting throughout this whole process. We were told that Emma is resistant to the antibiotic Ampicillin, which belongs to the penicillin group. This was pretty surprising given the fact that she has NEVER been on antibiotics until this UTI event.
Sunday, May 23, 2010
As you can tell, we haven't quite finished baby proofing yet. :)
Thursday, May 20, 2010
One of the things we have tried is to have Emma feed herself more often. Tonight, we tried to just fill the spoon with her garden veggies, and let her have at it. It was pretty funny and wouldn't you know, she ate the whole bowl. :) We also have a video that I will try to post a little later. What you can't see, is the streak of garden veggies along the side of her head, on mommy's pants and all over Shamus.
Then I decided that since we were already a ginormous mess, why not go outside and get even dirtier!! :) Last time we tried to introduce Emma to grass, she wasn't a big fan, but this time, she conquered her fear! That's my girl!
I guess it was okay, because she gave it a go!
Then she decided that maybe it wasn't such a good idea, but boy did she want to get that Shamus toy!
So she gave it another go!
Still going....and going strong! Once she started, there was no turning back, no pausing, just shear determination!
After she got to the toy, she realized that it wasn't as exciting as she thought. So Emma charged over to the dirtiest spot she could find.
We thought "Oh look, she is playing in dirt...how cute!" In reality, she just found a rock and put it right in her mouth! This coming from a girl who will refuse peach yogurt and strawberries, but darn it if she won't eat a dirty rock! Luckily Daddy was right there to save the day!
We decided that was enough excitement for the evening, so we were off to clean up my dirty little baby!
Ahh....there she is.
Wednesday, May 19, 2010
Sitting at the same desk that I was exactly one year ago, I can still vividly remember exactly how those hiccups felt and how excited I was that morning. It seems so long ago. Those first set of hiccups, still make my day. :)
My baby...
- My baby is turning 11 months next week.
- My baby is getting bigger by the day.
- My baby LOVES to stand.
- My baby took a few steps last night from the ottoman over to the couch.
- My baby has a cold.
- My baby is very stubborn.
- My baby laughs, a lot.
- My baby has a temper!
- My baby loves to refuse food.
- My baby refused formula this morning but drank 4 ounces of water instead.
- My baby is beautiful.
- My baby is bald. :)
- My baby is smart.
- My baby LOVES her Daddy.
- My baby LOVES her Shamus.
- My baby LOVES to chase after Arby.
- My baby still loves My Friends, Tigger and Pooh.
- My baby is turning ONE in less that two months.
- My baby's favorite stuffed animals are her pink bear and her little doggie "Oscar".
- My baby points at everything.
- My baby can say mama, dada, nana, duck and bye bye.
- My baby is my angel.
- My baby is my world.
Monday, May 17, 2010
My camera battery ran out just as I was heading upstairs to take a picture of Emma while she was sleeping. I have posted before about how she loves to sleep folded over, but this time was even better. She of course was folded over, but then tried to stretch out and ended up like this!
Swagger Wagon
Never a Dull Moment
Friday, May 14, 2010
There will be more to come on this, but basically we found out today, after two very long days and many hours at the doctors office, that Emma has a UTI. We aren't sure where she got it from yet, but after she is better Emma will be going through a few more tests to hopefully find out. My poor baby is miserable and is still having a high fever despite two strong doses (four shots) of antibiotics. I am really hoping that tonight will be the night that she kicks the fever, but the diaper bag is packed and ready to go just in case. Last night, Emma spiked a fever of 104.6. So we were 0.4 degrees and 2 minutes away from heading to the ER, but luckily the fever broke. Hopefully there won't be any repeats tonight, but just in case there are, I am heading off to bed, and yes, it is still light outside. :)
Sunday, May 9, 2010
Here is an example of one of the videos I took of Emma on our old Sony digital camera (5 years old)...
And here is an example of a video that I took today with my new Flip!
My First Mother's Day
I also got an amazing gift of a Flip Video! I have been wanting something better then our 5 year old digital camera for videos of Emma for months now, and I finally have something!!
The day was a lot like a regular Sunday, filled with some house cleaning and errands but we took our time today, we weren't in a hurry, what got done was good, and if it didn't get done, too bad! After a delicious brunch, with some hot coffee, turkey bacon and homemade omelets, I think Wes and I were too stuffed to move anyway haha! Emma had a bit of a rough day as I think she is cutting what will be her 5th tooth! It's hard to tell but she had all of the classic symptoms, chewing on her fingers (and everything else in site), cranky, excessive drooling, you name it! So that was another reason why we kept it loy-key today.
Tonight for dinner, my amazing chef of a husband, made me one of my favorite recipes by Giada De Laurentiis. Yum!
I also couldn't resist and NOT post a picture of my baby on Mother's Day! Even though I am a wife, a coworker, a sister, a daughter, a friend, a student and other things, being a mother is the most rewarding but the hardest job that I have ever had. I wouldn't change it for the world, and I would do anything for my daughter, Emma Kathryn.
Look What I Can Do!
So needless to say...her mobile came down, and many more baby gates went up this weekend. :)
Friday, May 7, 2010
Emma did pretty good yesterday with her eating. Instead of coming home with two of the three bottles we send to daycare, she only came home with one! Woo hoo! So she had about 15 ounces total yesterday which was a pretty big thing for her! She also ate lots of her breakfast and lunch, but of course came home and refused all of her dinner. That stink pot! Fingers are crossed that she will have another good eating and drinking today too!
We haven't yet tried switching formula but I think we may give that a shot this weekend. We are also going to try straws as well. We have tried cups and "big people" cereal made with cheerios and formula, sippy cups, dipping her toast in formula, mixing it in food, giving it to her before her meal, or waiting longer after. We have also tried every different temperature known to man...super cold, cold, room temperature, and warm. She does love water so she will drink that until the cows comes home, but isn't a big fan of juices really.
Megan also asked me in one of the comments for baby food sources. A lot of what I have tried so far came from talking to other mom's at Emma's daycare or talking to friends with little ones. This is also one of my favorite websites though for homemade baby food: http://www.wholesomebabyfood.com/. That has everything from how to cook it, to how to store it and good combinations from infant to toddler. I hope that helps Megan, good luck!
Wednesday, May 5, 2010
In case you are curious...Emma had a total of about 10 ounces of formula today, which compared to yesterday was very good. Still not enough and she also refused most of dinner tonight, but overall ate a good breakfast and lunch.
Tuesday, May 4, 2010
But then she thought about it...
Success!!!
That was until the next day and she refused everything that she had just scarfed down the night before. UGH! Defeated by a 10 month-old! Once again!
Folded in Half
Sunday, May 2, 2010
We had a great time and Emma did really well despite Mommy coating her from head to toe in sunscreen and making her wear her bucket hat all day haha. We did a little animal watching for about an hour and then stopped under a nice shady area for lunch. Emma loved seeing the animals but I think spent more time watching all of the children running around.
After heading home, Emma took a good long nap again and was ready to play for the rest of the night at home. These are the kind of days that I love taking my camera along because although I may not get the best pictures (I am still learning the manual settings and especially outdoors) but I love being able to capture these little moments. Because our time and activities with Emma is somewhat limited during the week because of working, I really look forward to little trips like these, spending time with just the three of us, our little family.
Here are some pictures from our fun day!