Easter in Pictures

My pretty girl is walking everywhere.

Jerry is the only one that got to meet the Easter bunny.  His school had an Easter party and I was able to attend and snap some pictures.

All the kids hanging out at Marilyn's on Easter Saturday (we got two Easter dinner's this year).

Easter morning.  The Easter bunny bought sand buckets for toys this year...what a smart bunny!

Hope and Ava...aren't they the cutest little girls.  Hope is 6 weeks older than Ava and I believe they will be best friends as they grow up.  We had our second Easter dinner at Robin and Jerome's (Ava's mommy and daddy).

My little Princess Peanut!  This is the longest she ever kept a clip in her hair.  She finally took it out after dinner.

Bioartificial Organs

This may be Hope's future.  I am praying every day for advances in medical technology.  I just don't think that the medical community has worked hard enough to figure out a way to keep human organs from rejecting when transplanted.  That's why I am embracing the new technologies so much.  You have to read this article from the Cleveland Clinic (our hometown hospital) on the Artificial Kidney that has already gone through Phase I and II clinical trials.  I know human trials are coming and then it will be several years before they try it on kids, but really...how amazing.  Hope's nephrologist told me about this study yesterday and I had to do some research on it today. 

And at the University of Michigan, H. David Humes has created an artificial kidney from cells seeded onto a synthetic scaffold. The cell-phone-size kidney has passed tests on sheep—it's not yet implantable, but it's wearable, unlike a dialysis machine, and it does more than filter toxins from blood. It also makes hormones and performs other kidney functions.

Are you as amazed as I am?  I hope so and I hope everyone has a chance to read this article in National Geographic on Organ Regeneration.  Did you know that 30 people have received lab-grown bladders already, and other engineered organs are in the pipeline?  I just sit here and imagine what this will mean for the heart babies not yet born.We have come so far and I pray that we continue to make progress in this and ALL diseases. 

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 gain...like 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.

Walking

Hope is WALKING!!!  All on her own, unassisted...WALKING.  She is amazing.  I don't know how to express the emotions I am feeling right now.  I try so hard to forget what we went through before she was born and the first few weeks of her life.  I remember sitting on the bench my husband made me for Mother's Day thinking that I would never see Hope enjoy our beautiful house and the wonderful yard we have.  I remember crying so much before she was born as I watched the boys playing in the sandbox, on the swings, and running around our yard.  My heart broke thinking that Hope would never experience all of the amazing things the boys have been able to enjoy.  Tears still come to my eyes today as I remember that time.  I am overjoyed that Hope has been able to swing, play in the sandbox (although she hates getting dirty, so that is always short lived), and now walking around the yard.  She loves the peacocks and chickens and spends a lot of time playing with them.  She has made a friend in Petey (she is a peacock that I tamed when she was young and will go on my arm and eat from my hand).  All of the things I never dreamed were possible...they are possible and happening in our lives.

A couple of our peacocks.  We will be having babies soon.

I know Hope is medically fragile and always will be.  I am reminded of that when her nurse comes to weigh her...and I find myself hating those days.  I hate that I can't get her to gain weight...that we may have to resort to a feeding tube at night.  But...I love that she loves to eat.  She will eat anything and loves to eat.  She may only take a few bites, but she does love to eat.  She burns her calories so fast that a G-tube has been mentioned on more than one occasion.  I don't want to think about it and I know it will be hard on all of us if we have to resort to it, but I also want her to be as healthy as possible.

Now for a few more fun pictures...my post was getting too serious again and we are heading to the nephrologist tomorrow.

Jerry had school pictures today.  He got all dressed up and looked so handsome!

My little cutie.  Paul is growing up so fast.

Not much happening

It seems like when not much is happening around here I find it difficult to post anything.  We are getting ready for a visit to the Nephrologist (kidney doctor) on Wednesday.  I worry about these appointments as much as the cardiology appointments.  We have been told that Hope will need a kidney transplant someday and every time we go to the kidney doctor, I worry that he will find her in kidney failure.  I know the signs and I don't see them in Hope, but I worry that I won't catch something and it will go to far.  I am planning to meet with a few other kidney doctors this summer.  I am not a fan of them at all and would really like to find one that I feel comfortable.  It really is not an easy task because the doctor that made the decision that Hope was not a good candidate for the Norwood was a nephrologist and the most negative person I had ever met.  It seems like a pattern...these doctors are not positive people at all (at least the ones I have met).  I know she was born with crappy kidneys and neither of them work 100%, but they are still working and I don't know why the doctors can't focus on that instead of the negative all the time.  I often think I live in denial about her kidneys and in some ways I am sure I do.  She has a major heart defect...I think that is more important than the kidneys.  I don't want to focus on something that I don't know as much about...and I now know about the heart.  I have tried to learn about the kidneys, but they are even more confusing. 

For not much happening, this post has turned into a long ramble about my worries.  I guess I didn't realize how worried I have been about this appointment.  I will update more after the appointment because we are all enjoying the fact that there is not a lot to post about!