Thursday, January 28, 2016

Miss Eliza

Since I took a blogging break after Eliza was born, minus a few quick posts, I figured I should probably give some updates!  

Since I have posted about her heart in the past, I'll start there.  Eliza has been back to see her cardiologist a few times since my first post, and unfortunately (or fortunately!) we don't really have any answers or updates at this point.  Each time we've gone back I've been told we would do the repeat echocardiogram at the following appointment.  However, we still haven't had that repeated!  Thankfully, her symptoms of the blue legs and lips has completely gone away.  At the times of our last appointments they were still happening, however, not nearly as frequently or severe as when she was a newborn.  At both appointments the doctor felt that Eliza wouldn't be able to lay still for the length of the exam and since her symptoms have improved so much, we both agreed that the risks of sedating her outweighed the benefits of having the test preformed again.  Within the next few months I will need to take her in to have the test repeated so we can find out if there is an ASD or PFO.  She has had EKG's at all of her appointments that look great and while her murmur is still present, it is less severe.  So for now, things are well with her heart!

As with all my kids, hah, she now has yet another issue going on.  In September, Eliza developed a high fever shortly after getting her 12 month vaccines.  I didn't think anything of it and wasn't planning on taking her to the doctor but I had Zach in for a sick visit and just mentioned that she had a fever.  As is typical with my doctors office, they wanted a full workup.  Their primary concern was a urinary tract infection so we taped a bag to her but of course she didn't pee.  They eventually sent us home with instructions to return in a few days if she wasn't feeling better.  Unfortunately she didn't get better so we went back so they could give her a catheter.  That was awful!!  It came back that she did have a UTI and on antibiotics she went.  At her 15 month check up, her pediatrician said that she'd like Eliza to have an ultrasound on her kidney's and bladder to make sure everything is formed and working properly.  She also ordered a test called a VCUG which is an xray of the bladder to see if urine goes back up towards the kidney's rather than out the urethra.  Eliza just had these exams 2 weeks ago.  The ultrasound went great and her kidney's and bladder are all perfectly formed and functioning.  She was so cute during the exam, I was actually expecting her to wiggle around a lot but I set her on the bed and told her to lay down and she went right down.  Every time she lifted her head I would just say, "you need to put your head down Eliza" and she did.  It was so adorable!!

The VCUG was a little more difficult but she did great for that too.  A nurse came in and inserted a catheter (which thankfully went in on the first try, unlike at the pediatricians office) and then they hooked it to a bag which pumped in some sort of solution to her bladder.  Once her bladder was full, we just had to wait for her to pee.  It was brutal because she had to be swaddled down which she hated and tech doing the exam explained it like you being in the car and having to go to the bathroom so so bad but not being able to find a rest stop to go.  That exploding feeling.  So sad!!  Finally she went to the bathroom and we were able to complete the test.  Unfortunately we didn't get results that day so we had to wait.  We got a call from our pediatrician the next day that everything was great.  Here I thought we were done but a few days after that I got another call from our pediatrician.  Apparently the first result was given by the radiologist but after that the films go to a board that looks at all the images.  When the board was looking, they saw something that was questionable to them so they decided to look deeper.  Our pediatrician explained that when the xray is done, the machine takes around 1000 pictures.  They then compress them down to about 20 images that the radiologist looks at and reviews.  So when the review board saw something on one of the images, they were able to separate the picture into the 100 or so pictures that compromised that image.  When they were looking, they were able to see that Eliza actually does have kidney reflux.  Thankfully for us, it is very low grade.  The scale goes from 0 (no reflux) to 5 (severe reflux) and Eliza's falls somewhere between 1-2.  Basically kidney reflux causes you to be prone to UTI's since the urine is going back up to the kidneys rather than down and out.  The treatment plan is a low dose antibiotic daily until the reflux is outgrown.  I am not one to jump to antibiotics and I'll be honest, the thought of a long term antibiotic was kind of scary to me as I don't want her to grow resistant should she ever actually really need them.  Thankfully our pediatrician was in agreement and since her's is so low grade we opted to not put her on the antibiotics.  We will keep an eye on her and if she does start having UTI's frequently we can reevaluate the situation.

Although she does have these two issues, thankfully they're nothing we can't handle, and in the grand scheme of things not that big of a deal.  She is otherwise thriving and doing great.  She's been walking since 11 months, starting to sort of talk, and she has the most amazing personality.  We are so thankful to have her and I can't wait to see the little person she is becoming!

No comments: