Fears

Hope has appointments like crazy on Monday, August 1st - TOMORROW!

We start the day at 9:30 with a renal ultrasound.  This will give us pictures of her cystic kidneys.  I don't look forward to that, but Hope does pretty good with the ultrasound itself.  I hate looking at her kidneys and knowing that they are just more cystic and not really growing.  I really need to spend more time doing some research on this, but I just don't feel up to it.  What I have read is not good and I hate to read any more about it.

Next up at 11:00 we meet with the nephrologist.  He will have one of his nurses attempt to draw some blood.  This will NOT go well at all because they suck at blood draws on kids with hard sticks.  I am thinking if we have time between the ultrasound and the office visit I may head up to cardiology and have John (the best stick in town) take some blood.  The appointment with Dr. Kwan, the nephrologist, will probably be crappy.  I don't like or understand nephrology and the appointment usually ends with me crying because I know Hope will eventually need a transplant and I always worry this will be the appointment where we find out she is entering kidney failure.  My heart breaks even typing this because I hate this reality.  I hate that she has to have another life-threatening problem.  Isn't the heart enough? 

We will have a little lunch and then visit the PICU to hand out some bags of stuff to the parents that are there with their baby.  I have these cute heart bags and I have filled them with all sorts of stuff.  I am excited that we will have the time to make this delivery.  I am looking forward to seeing the nurses and not actually having Hope a patient.

At 1:30 we have the echo and EKG...which will be rough for Hope and I.  She hates these more than I can even describe.  People in the waiting room can hear her screaming. It breaks my heart.  I keep thinking that maybe, just maybe she will learn to be OK with the appointments, but we only go every 6 months, so it is really hard.

At 2:30 we meet with Hope's cardiologist.  I pray it will be a great appointment.  Her last one was really good...other than the weight gain issue...and I am hoping for the same.  I know we are going to discuss a g-tube and that is why Jerry is coming with us.  He is totally against it and I want him to hear what the doctor's are saying.  I want him to hear everything.  I am on the fence with the g-tube.  I would prefer not putting Hope through another surgery...especially one that is kind of elective.  She is eating...just not a lot.  Definitely not enough for her to gain much weight.  I just pray it will be a better day than I am expecting.

I am hoping you all can say a prayer for us tomorrow.  We would appreciate all the good vibes during our appointments.

My Puppy Post - with pictures

I wanted to do a post on just the puppies.  They are all so cute and they are all 6 weeks old.  They started eating puppy food this week and playing like crazy.  They are running all over the house.  I feed them and let them play outside because I don't want them messing up my house too much.  I have never mopped my floors this much...I am sure they needed it though.

They will be getting their first shot and de-wormed this weekend.  A local vet is taking two of the girls and has graciously provided the shots for us.  He also checked them all out and they are all in great health.  His wife is Hope's physical therapist...such a small world.

Dad and Mom

Gizmo - he has the cutest white line of fur in the middle of his head.

The boys call this one Little Guy.  He is the male 'runt' and has the biggest cutest ears.

Humongo...because she is the biggest girl.  She has a precious face too.

This is Bailey and she is already taken.  She is super cute and super fun to play with.  She loves to run and play.

Prince...it just fits him.

Jerry playing with the pups.  They love to play and are great with the kids.

22 Months...SO Much Going On!

My princess peanut is 22 months today.  She is amazing!  I have been reflecting lately...like I do so much of the time.  I often wonder if I will always spend so much time reflecting on the past.  I have found that once the Fontan is done, many heart families don't blog as often.  I wonder if that will be me.  Will I be able to stop sharing all the little milestones?  Will I feel I can catch my breath and not worry all the time?  I am not sure when Hope will have her Fontan.  She is still really little, so I am guessing it will be next summer...or maybe the summer after.  I pray all the time that her heart doesn't make her actually 'need' the Fontan...that it can happen when she is doing good and not have it be an emergency.  I pray all the time that her kidney's continue to handle everything and they don't cause her any problems.  I know they will eventually...realistically she will eventually need a transplant.  I pray it is far into the future...maybe when they have found a different way of transplanting kidneys (hopefully with artificial or stem cells).

We have been having a blast this summer.  We spend as much time outside as possible.  The kids would be outside all day if I let them.  Hope runs and plays with the boys and they are really good about including her.  Jerry even picks her up and carries her over the rocks in the driveway so it won't hurt her feet.  He is a great kid and so good with Hope.  They have these little discussions and I know they are really close and I can tell Jerry knows Hope needs a little extra love and support sometimes.

With that said...I am thinking Hope is getting a little spoiled.  Or...it is the terrible twos coming on a little early.  There are days when she fusses all day and wants mommy to hold her all the time.  I really don't think it is heart related because she only wants mom.  It seems like a power struggle too.  She does just fine and can play really well when I am not in the same room.  If I go to the play room to check on her and the boys, she will scream to be picked up.

Finally...the other day we were all hanging out in the living room.  My husband looked out the patio doors and saw a hawk on the picnic table by the lake (we have four picnic tables).  It was a beautiful bird and I grabbed the camera.  I thought for sure it would fly away when I tried to go take his picture.  Nope...we found out he broke his wing and couldn't get away.  I got a bunch of great pictures before taking him to this cool Raptor Center nearby.  They take care of all sorts of birds and they are all wonderful people.  I didn't know anything about the center, but it is now on my list to donate.  They have hawks, eagles, buzzards, and every other kind of bird you can think of.  Here is their website if you want to check them out.

Puppies, Puppies, EVERYWHERE

Yep...we have a bunch of the cutest little golden-doodle puppies.  Nine to be exact.  They were born almost 3 weeks ago and have started walking this week.  I feel like a new mom...waiting for their eyes to open, watching them try and walk, and now I am waiting for them to start eating on their own.  I already have mine picked out...even though Jerry doesn't seem to think we are keeping one.  If anyone wants a cute puppy, let me know.  Both dogs are getting fixed.  We have planned this litter since we had both dogs and figured the puppies would be cute as can be, but dog breeders is out of the question for us.  I have no time or desire to breed dogs, but I just love my golden (Rex) and labradoodle (Olivia) and knew they would make cute puppies.

I will post some recent pictures in my next post.  They are getting so big and so cute.  Their personalities are starting to really show. 

4th of July

It is amazing to me how people forget the meaning of some very important holidays.  The 4th of July is a very important day in the history of the United States. The Fourth of July is a time to commemorate America's declaration of separation from Great Britain that was made on July 4, 1776. Our freedom and our democracy that we have been blessed with is a direct product of the sheer determination from our forefathers who worked to establish the United States of America as a free country.

I love the 4th of July and spending it with family.  It is always a day of picnics and late night fireworks.  We did both yesterday...we have to work tomorrow, so staying out until midnight watching fireworks would not work for us tonight.  The kids had a great time and with family...it is always a great day.