Thursday, April 14, 2011

Nephrology and Nineteen Months

This is the bench that my wonderful husband made me for Mother's Day when I was pregnant with Hope.  I spent a lot of time on this bench wondering and worrying about my princess.
Hope is now 19 Months old!  What an amazing little girl we have.  I am so proud of our little girl and how well she is doing and how much she has accomplished.  I look back probably a little too often, but it helps me realize what a miracle we have and how much we have to be thankful for.  Hope woke me up at 1 this morning and kept me up until my husband left for work around 4.  I love my sleep and miss it so much when it is broken up so much.  But...the one thing that crossed my mind when I was wide awake and again woke up for the day at 7 is that there are a whole lot of moms out there that would give anything to be awake with their little ones in the middle of the night.  I am so tired, but so thankful that Hope is the reason I am so tired.  I do get cranky...don't get me wrong...but I have seen too many moms lose their babies since starting this heart mom journey that I find myself thinking more of the positive and less on the negative.  Although...I would love to go to sleep around 10 and wake up at 8 fully rested and not feeling rushed.
Maybe she will take up surfing!
Onto the appointment from yesterday.  Ughh...I was not looking forward to it at all.  I am not fond (that is being really kind) of Nephrologists.  I have had really bad experiences with them with Hope and I am bitter.  Anyway, we got to the appointment on time (because that is what we do).  We waited about 1/2 an hour in the waiting room and then got the weight (not bad...not good, but not bad), blood pressure (great...95/67), pulse ox (great...87), and temperature (not sure what it was, but it was good).  Then we went back to the room and waited...and waited...and waited some more.  Finally the nurse came in and talked to me for a while.  Weight was brought up again as were her kidney numbers from her last blood test.  They are the same (not great, but the same) so no one is worried.  That made me feel really good.  Of course, we had to wait for Dr. Kwan.  He finally arrived around 2 (or appointment was at 1) and we talked for a while.  I had a bunch of questions (no surprise for any of my regular blog readers).  He is concerned about Hope's weight and really wants us to work on weight big time work on it.  I am thinking that if Hope does not gain some serious weight by July that we will be talking about a G-tube.  I am VERY resistant, but I don't want to put Hope at risk for any problems by resisting something that may help her in the long run.  Anyway, I learned some cool stuff that I thought I would share.  They are in trials at the clinic for an artificial kidney (it is adults only right now) and it sounds really promising.  I am totally confused when it comes to transplants, but from the little I have learned, it is better to get a machine that a donor organ because then you don't need all of the rejection medicine (which has its own problems).  I could write for hours on my thoughts about progress in the transplant field (like why haven't they made more progress in rejections), but I will end on this note...stem cell research is growing (finally) and will change the world of medicine and save MANY lives.


  1. I totally agree about stem cell research. We saved Sam's cord blood in the hopes that by the time he needs his heart, SOMETHING better than traditional transplant will be available. I know they are already proficient at growing simple organs, like the bladder. I have read they are about 5 years from growing hearts, and 10 years from human trails. I pray daily that is an over estimate. BUT I still place my faith in this research. Hope is adorable, and I'm gald your appointment didn't hold any surprises. I will be praying for some weight gain for her, and if she must get the G-tube, praying for acceptance and success!

  2. I completely know what you mean Paula about being thankful for the little things. Whenever Aly keeps us up or is having a very grouchy day and I want to get frustrated I remind myself of all the parents we know who would give anything to be having to deal with a grouchy day with their children who have passed.
    How much does Hope weigh? Aly has been stuck at 20 pounds for almost a year. Praying for weight gain for Hope.

  3. Hi Paula,
    Cadence has Shone's and HLHS. She, too, is dealing with growth issues. We have talked about a G-Tube for months now and am pursuing growth hormone studies as well. She is 6 years old (what a miracle) and she weighs 29 pounds. But all spunk! She doesn't absorb fat - complications from her Fontan. My son, my daughter and I all have CHD's and have pacemakers. We've had about 17 surgeries between us. But - like you- we remember how blessed we are. Give Hope a hug from one heart family to another. Melissa

  4. Praying Hope can gain some weight without the need for a tube. Logan had a tube for eighteen months and it really was the best thing for him because he didn't take hardly anything by mouth.

    Keep enjoying the little happy times with Hope!!