Fair Time

I wanted to share these great pictures of our day and weekend at the Cuyahoga County Fair.  The kids all had an amazing time and Hope got to hop on some rides.

Having a blast driving in circles!

Getting ready to fly high in their helicopter.

More plane rides.

At the butterfly exhibit with cousin, Amanda.

Strolling around with big sister, Destiny

Riding the motorcycle with her big brother, Jerry.  This one scared me the most...she seemed so small on the motorcycle.

We had a great time and love the county fair.  Great food, rides, animals, friends, family, and a great time for everyone.

Now, we wait for Wednesday.  If you have some extra prayers, good vibes, ideas, or thoughts about getting Hope to gain some weight (preferably more than 100 grams), please share.  I really want this weigh in to be good and a happy occasion for both of us!

Weight....UGH

Well...I was hopeful when we went on Wednesday that her weight would be up.  Really hopeful.  I weighed her on two different scales and both showed she was over 18 pounds.  Yep...you guessed it...she actually showed a weight loss on their scale.  It is a different scale, so I am blaming it on the scale.  Something I have come to hate for many years for many different reasons.  Now I just get to add another reason to the list.  We started getting in more calories the day after the appointment.  We realized 1200 was too much after having only 500-700 prior to that day.  She threw up a couple of times and I know it was because it was too much.  We are now trying to make sure she gets between 800-1000 every single day.  What does this mean?  A whole lot of liquid because it packs a whole lot more calories than most food.  I create an 8 ounce concoction every morning that contains 800 calories.  I make sure she drinks at least an ounce as often as possible during the day.  She also drinks a high calorie juice every day which packs 250 calories.  So far she has done pretty good with the concoction, but still has not finished one whole one in a day...but I keep trying.  Today she got in 6 ounces, so that was pretty good.  I give her food during the day, but she doesn't eat that much and I am realizing how few calories she was probably getting before...500 may have been the normal.  Pretty scary when you really think about how few calories she was getting.  Anyway...we head back to the same scale at the same time next Wednesday.  I am hopeful it will be a better experience.  It has to be or I don't know what will happen...I don't even want to think about what will happen.

Just call it a day of weight/wait

Renal ultrasound...I really wish they would get these types of TVs in Cardiology!

She does great with the renal ultrasound!

The best way to describe today was busy.  Busier than I really expected the day to be.  We did get all appointments done and over with and handed out the packages in the Cardiac ICU.  I will write this as an update from each appointment.

First was the renal ultrasound.  Not much change since the last one...this is good news.  Her right kidney grew a little (really good news).  Her left one did not.  She has bilateral cystic kidney disease...meaning both of her kidneys have cysts and do not function at 100%.

Next was nephrology...late as always.  I know it is probably hard to make an appointment at the scheduled time, but just once I would like to have one at the scheduled time.  Anyway, we weren't there for very long because everything stayed the same.  Dr. Kwon wanted blood work, so that would be done in cardiology...we don't let anyone but John (he can stick anyone, anytime...and he is the BEST phlebotomist EVER). 

Lots of heart bags for the parents in the Cardiac ICU.

After that appointment we went to the truck and got the bags to hand out in the cardiac ICU to the parents.  I included a little of everything...food, water, gifts, hand sanitizer, chap stick...just a little of everything you need when you are praying for your little one in ICU.  It was great seeing the doctors and nurses that took care of Hope...they still remember her which warmed my heart.

Off to lunch...nothing exciting.

Cardiology the rest of the afternoon.  And I mean...the rest of the afternoon.  We managed to get home at 6pm...UGHHHH!!!  Height...yeah, she is getting taller (that I knew), Sats...86, which is still great.  Blood Pressure....98/46, they tell me this is good.  Finally...WEIGHT...17 pounds 5 ounces...OUCHHHHH.  I was so hoping for a better number.  Praying, feeding, carrying her around...anything to get a few pounds on her before this appointment.

So...what does that mean.  We got to meet with our favorite dietitian ever...Christina.  She is wonderful and caring and loves Hope.  She stressed that Hope needs about 1200 calories per day.  WOW...that is a lot for my little peanut.  If she gets 500-700 on a typical day I would be surprised.  This is going to be so hard for us because she likes all the healthy foods...especially watermelon which has about zero calories.  We have tried everything.  We finally found these juices from Nestle which she likes.  I am going to try really hard to get her to drink 2 a day.  She usually only drinks ones, so another challenge.  That will be over 500 calories just in juice.  We also add Benecalorie to everything.  1.5 ounces packs 330 calories, but it is hard to use the whole thing, so she only goes through one of those every 2-3 days.  This is going to change.  I need to get 1-2 of those in her a day.  With the typical food she eats, that should get us around 800-1200 calories a day. 

I must say that this is the hardest thing I have ever gone through in my life.  I never in a million years would think I would have a child that could not gain weight.  I have struggled with weight all my life.  It is so much easier to not have junk food in the house and lose weight than it is to try and get a toddler that does not want to eat to actually eat high calorie food.

So...here's the plan.  We feed her like crazy.  She has to go to the cardiology department at Medina Hospital on the 10th for her weigh in.  Then...feed like crazy, limit activity, get her to sleep as much as possible, and weigh in on the 17th.  If she gains weight all is good and we know that it is just a calorie issue and we have to make sure she gets in enough calories to gain weight.  If she doesn't gain weight we have to go back downtown and have another discussion with Dr. Prieto.  She is suggesting that if she is not gaining at that time that we put her in the hospital for 3 days and determine if it really is a calorie issue or if there is something else happening.  It would also mean another g-tube discussion.  We surprisingly did not talk much about a g-tube with this appointment.  My feeling about the g-tube is that if Dr. Prieto has a problem with getting her ears pierced because it is elective, I feel the same about the g-tube.

Overall...I think the appointments went a little better than I expected.  I knew we would have hard discussions on her weight.  I am glad Jerry came with me because I really needed to have him hear the stress they have about her gaining weight.  He realizes the importance and I am hoping it will get him to really enforce the issue a lot more.  I don't want Hope in the hospital for weight issues.  The next time I want her in the hospital is when she has her Fontan.

And now that discussion...Dr. Prieto and the cardiologists at the Clinic believe the best time to have the Fontan is between 3-5.  They know that many places are performing them at 18-24 months, but they feel like there is not enough data to prove whether or not that is a good idea.  It has not been happening that long (maybe 2-5 years at some places) and there is just not enough data to support the theory that earlier is better.  That gives me some breathing room to get Hope to the biggest weight possible.  Low weight is a major risk factor for the Fontan.  Bigger kids do much better than ones that are little.  Dr. Prieto is going to send me research papers and their own data showing this...because I really need to see it in writing.

View of Cleveland from the parking garage...on our way home (finally)!

So, that was our day.  Very long, very draining.  I was happy, sad, scared, and relieved.  I went through the whole roller coaster of emotions and now it is over.  Back to real life and spending as much time as possible loving on my kids.