New Beginnings

Life has been crazy and hectic since my last post. Here's some of the great things happening in Casa de W.

1. My sister gave birth to a healthy as can be expected, baby girl, Samantha Leann at 30 weeks gestation while visiting PA from NC.  Sammi was 17 inches long, 4 lbs. 2 oz., is breathing on her own, pooping, and sucking ever so lightly on a pacifier.  She'll be in the NICU until she at least reaches 34 weeks gestational age, so Pat will be hanging in PA with the baby for the next month.

2. C had her appointment with her nephrologist, who has cleared her for surgery.  We are currently looking for an automatic blood pressure machine with a child sized cuff so that we can monitor her blood pressure.  This will help to determine if her high readings were stress related or indicative of kidney scarring.  The Nephrologist noted that the right kidney is smaller than the left and may be scarred. This could cause high blood pressure and protein in her urine.  Little to no risk of this turning into something that would cause the need for a transplant or dialysis.  WooHoo!

3. We registered our big girl for Kindergarten. She is so thrilled and doesn't quite understand that she will have to wait for September for school.  This month, she will play tee-ball for the first time, and next month, she'll have her dance recital for ballet and tap.

4. Baseball season has started for L (not for J, yet).  This will be his first year in coach pitch, and he is finally excited. Originally, he was fearful of having to hit a moving ball, but he seems to be more excited as practices progress.

5. I got a "real" job.  By real, I mean a full time, out of the office, job.  I am working for a local healthcare BPO, as a process analyst.  Boy, oh boy.  There is a lot to do.  I just hope I am as good as I sold myself to be.  The people are all really nice and seem dedicated to doing the right thing, though, there is a mix of those that are looking for a free ride.  Here's hoping this career is worth missing my babies.

6. As a result of getting a job, we also got a nanny.  The kids love her, well, I think. J seems to be giving her some problems if she's told to do things she doesn't want to do.  It pretty much sums her up, as she behaves the same way with me (until I lay the smack down ;-) ), so I will have to assume she feels comfortable around her.  The thing that makes going to work easier is that Q just loves the nanny.  She waves to her constantly and smiles in her presence.  Though I don't want to be replaced, I am glad she feels safe and loved.

7. P and I are having a bit of a difficult adjustment to both of us working.  The other day, we woke up and realized that there was no bread, no fresh fruit and not much in the house that the kids could or would eat.  That night, we went grocery shopping and didn't get home until 9 pm.  Don't worry.  We won't be having that problem again. We spent a month's budget in one night.  Here's hoping I can figure out a good schedule.  If you've got one, please share.

I'm also having a hard time trying to figure dinner out.  By the time I get home, I nurse the baby, then its 6 pm.  The kids need to be in bed before 8, and 3 nights out of the week, we have "stuff" to do.  We'll figure it out, but I'm guessing it'll take time.

8. Weight loss has been a challenge for me, to say the least.  I am having a hard time making it to the gym or downstairs to the treadmill because Q has, again, decided she needs mommy by 6 am every morning.  So, exercise has been pretty much non-existent.  Again, ideas are appreciated.    And, don't get me started on food.  My new coworkers seem to have an addiction to sugar that is contagious.  HELP!

9. Let me not forgot my baby Q's milestones.  After soldier crawling for 2+ months, she has finally decided to crawl on all 4's, just yesterday.  She doesn't do it if she's in a hurry, but she will if she's going somewhere ever so slowly.  Oh, and now she's decided that she should climb the stairs, too.  She loves to wave, even though I was trying to teach her the sign for "milk", and she turned it into a wave.  She's just an amazing little girl, like all my kids were are. I can't believe she's growing so fast.

10.  Today, we went geocaching for the first time ever.  Basically, its a scavenger hunt. You are provided GPS coordinates to an item which you then seek.  When you find it, you sign the sheet and celebrate your success.  The kids LOVED it. It was great to do something outdoors as a family, and even better to do something that made us work together.  If you've never done it, I recommend you give it a try.  Visit www.geocaching.com and let me know what you think.  This was recommended to me by a friend, so I am paying it forward by telling you about it.

To all my friends reading this: I love you and miss you, all!  I wish we could chit chat more, and get together.  Don't become strangers!

Hey Doc...

...did you leave your brain at home?  You wrote a prescription for the wrong medication and fed me conflicting information.  Hello?!

Okay, I'm no doctor, BUT I am an educated mother.  Meaning, you told me that my child has vesicoureteral reflux (VUR), so I researched it and have paid close attention to everything you've ever said.

Yesterday, my mom and I took C (along with Q) down to St. Christopher's Children's Hospital for her urology appointment.  She had a kidney ultrasound and a VCUG (voiding cystourethrogram) in the morning and saw the specialist right afterward.  

She did amazingly well during her ultrasound, especially compared to December 2010, when she last had one.  At that point, they couldn't even read the test because she squirmed hysterically the entire time.  This time, with the help of the iPad, she was much calmer.  Hysterical? Yes, but only for the first 1/2 of the test.

The iPad was useless during the VCUG, though.  During the procedure, they catheterized C, and then took pictures of her kidneys, bladder and ureters.  I could see the second the dye became detectable, that she still had grade 4 reflux.  It was such a bummer, as we were really hoping for some signs of improvement.  Nonetheless, it is what it is.

This is Grade IV reflux.  The white ball at the bottom is the bladder, the tubes extending from it, the ureters.  At the top of the ureters, you can see that the urine flows into the kidney, the flowery area.

Previously, the Doctor said that if there was no improvement at this point, that we should move forward with surgery.  I definitely have prepared myself for the potential for that.  What I didn't prepare for was the Urologist saying, "Her kidneys have gotten larger, and there's been no improvement with the reflux.  She's still young.  Let's give it another year and see what happens."  


----screeeeechhhhh--- HOLD THE PHONE!

Let's just say that was not what I was expecting.  What happened to "there's a 60% chance that kids with grade 4 reflux will have to have it surgically corrected.  Since we haven't seen any improvement at this point [12/2010], I am going to assume that we won't.  But, she is still young.  Let's give it 15 months, recheck, and if there is still no improvement, I would recommend surgery?!"  


AND...her kidneys have increased in size.  Let's just say, that's not good. The medical term is hydronephrosis.  In essence, as a result of the urine coming back into the kidneys, they have been scarred and damaged.  This decreases their efficacy and could cause problems down the road for her.  Currently, her blood pressure is 110 over 64.  For an adult, that is great. For a 2/3 year old, it is too high.  Now, could her bp be up because of the stress of being in the hospital? Yes.  But, I must note that while the nurse was taking her bp, she was calm and had a smile on her face.  They also don't take bp readings on children this young at their primary care provider appointments.  So, we really have nothing which to compare her bp reading.  But, the fact of the matter is that high blood pressure is a result of damage to the kidneys, so we should be cautious.  An appointment with a pediatric nephrologist was suggested.


That's when I told him that I'd rather not wait.  C will be starting preschool next year.  I don't want her to have to miss it for surgery and doctor appointments.  She is terrified by the doctor already.  There is no way that I want to prolong this for her.  Each additional appointment with her urologist results in another catheterization which causes her pain and fear.  Every time she has a fever, she gets catheterized.  This is just really no fun for anyone, especially a toddler.  Her medication has to be specially made, so I don't carry it around (don't want to lose it). This means that she can't spend the night at grandma's house or her friend's house unless I've planned it out and brought her medication along.  The medicine is not cheap.  And, let's not even touch the cost of health insurance.  We selected our current plan based on surgery this year. Let' just say that it isn't cheap.


What do we get for waiting?  An extremely slight chance that the defect will self-correct.  In 2010, he said that it was less than 10% that it would. Of course, I don't want to see my girl suffer and undergo surgery, but I don't want to put off the inevitable and make it more of a memory than it should be.  I think that at this point, she probably wouldn't remember it at all.  I'd much rather her have little to no memory, than to be traumatized further.


Next step?  C will have a DMSA renal scan towards the end of March to assess the scarring on her kidneys.  She's had this test once before and it wasn't pretty.  2 hours prior to the procedure, they inject radioactive dye into a vein.  Then, the patient has to lie extremely still on a thin board as they have a device take pictures of the kidneys, from both top and bottom.  C did not do well with this, so much so, that they had to take a huge cloth and wrap her entire body to the table.  She was horrified.  This time, they are going to sedate her.  The sedation is at my request.  Since they have to tap a vein anyway, why not give her some peace at the same time.  I must admit that I am a bit nervous about how her body will react to the sedation (it isn't 100% safe, you know), but I think its best for her.  Regardless, we can always change our mind about the sedation, if we deem it to be too risky, or if she seems willing to cooperate during the test.

The previous DMSA scan showed some scarring or a growth abnormality or nothing to be worried about. Don't you just love when the results are so definitive?! [this is where a sarcastic font would come in great use].  I'm feeling that this one will probably show more definitive scarring since we haven't seen improvement in the reflux, and we've seen the high blood pressure.  Fingers are crossed, though, that it shows nothing.


After the scan, C will have another appointment with her Urologist to discuss the particulars of the surgery.  We are hoping that our scrappy little girl can come through all of this with a smile on her face. I know that either way, our scrappy little girl will come through all of this with a smile on her face.  Let's just hope that the Doctor shows up, on the same page!