On Bended Knee

Hospitals have never made me feel real great, unless I knew I was going to meet a new baby which then of course I was all about going.  It had been awhile since Isaac's last hospital stay.... actually a year to be exact.  With his upcoming surgery in October I have been trying to suppress the fact that in a month or so we will be back in the hospital for a huge surgery with a long and difficult recovery for my baby.  I was just trying to enjoy our summer and soak in all the goodness of having all 4 of us together at the same time.

There was something about this hospital stay that was needed.  I didn't want to be there.  It was hard to arrange babysitting for Gabe and difficult to be away from him all day while I tended to Isaac.  It was difficult to be away from Isaac at night while I got some rest and at least put Gabe to bed.   But, we did it.  We made it work and our kids didn't suffer from spending extra time with Grandma, Grandpa, Aunts and cousins.  Isaac managed with his night nurses and at the end of the day, time flew by and we were once again united as 4.  We were ok then and we will be ok when we visit the hospital again.  We will renew ourselves by surrounding ourselves with our family, old caretakers, new caretakers.  Gabe will have so much fun with Grandparents and cousins that he doesn't get to see often and their relationships will grow.  My heart will be heavy from being away from him throughout the day, but I know that he will benefit so much from spending quality time with other people that love him too.  My heart wishes I could trade places with Isaac and bear the pain he will endure, but I will once again be amazed at his strong will and drive and I will be renewed to toughen up myself.

Sometimes when times are good, I don't talk to my Lord.  Life is great and I forget.  But when times are hard, I beg, I pray and I ask.  One afternoon while Isaac was sleeping, Dan and I took a little walk around the hospital.  We wandered in the chapel.  It was very simple.  It had symbols from many different religions.  Shamefully, I didn't know what all the symbols were but there was a great sense of peace in that little chapel.  I liked seeing the different symbols and thinking about how it didn't matter what religion or belief that people came in there believing in.  It was safe ground for peace and comfort.  As I sat down I didn't feel the need to pray.  I knew my baby had a little virus, but he was going to be ok today, but what about other babies?  I was overcome with a deep sense of despair.  How many parents, grandparents, friends and family and walked into that chapel, dropped to bended knee in complete desperation and begged to their God for their child to be saved? How many of those prayers were answered with miracles?  How many angels were sent home with their God?

Our little hospital stay reminded me that this journey is not a sprint, but a marathon.  I am going to enjoy our September together.  I am going to prepare for Isaac's hospital stay so that it can be as comfortable for him as possible.  I am going to know that each day is a gift no matter how easy or hard it might be.  I am going to remember to get down on bended knee and be thankful and wishful and share my thoughts with my God.  He knows just what I need.

Hospital Hunches

I had a hunch when Isaac was going on 5 days of constant output that he would need hospitalized.  I have been so thankful that aside from surgery and surgery recovery we have not have any overnight hospitalizations due to illness until now.  Last weekend (Aug. 18th) we went to the doctor knowing that Isaac would probably need admitted so that we could get him hydrated.  He perked up pretty quickly after receiving the IV fluids but the nasty bug that he had hung on for a couple of days.  He stayed until Monday when he was able to take in fluids without the IV and keep everything down.  After getting some lab work back we learned that he had enterovirus.  Unfortunately, we couldn't give him a magical antibiotic to help him but we did have an explanation for his symptoms.

He came home and very slowly got back to his happy self.

Here are some pictures from him playing in the hospital:

You can tell in the beginning photos that he is dehydrated to the last photo where he is over-ly hydrated....but happy!

So thankful to be home again and grateful for all your prayers.  We are now on the quest for health as we prepare for his next hospital stay.  His next big surgery will happen on Oct. 9th.  More details on this to follow.

Our sick little puppy

As I mentioned in my previous post that a nasty bug was making it's way around our house....It started with Gabe, made it's way to me and now it crept in on our little Isaac and attacked with a vengeance.  I won't go into too much detail, but he has had intestinal distress since late Monday, early Tuesday and has lost 1 pound!  Now, 1 pound doesn't seem like too much, but for a little guy that already struggles with being small, it's a lot.  In fact it was 5 % of his body weight, thus he is "moderately" dehydrated.  Today Dan took off work after Isaac continued vomiting this morning and showed more signs of dehydration.  We thought for sure he would need to be admitted for IV fluids, but angels must be watching over him because his weight was the same when we got to the doctor.  His belly was quite gurgly, which was actually a good sign that things were in there.  He certainly doesn't feel well, but luckily we are able to keep working on fluids at home and have a prescription for a med that will help if the vomiting continues.

I am sure he will bounce back; we are hoping he bounces back real soon.... Our sick little puppy.....

(He is watching TV while he is patiently waiting to have labs drawn to check his electrolyte levels.)

On a side note, Isaac has LOVES puppies (and dogs).  Anytime he sees one or hears one he immediately says, "woof woof" and perks up.  It's my favorite thing he does these days :)

Summer Fun!

We've had such a busy and fun summer it is hard to believe it is almost over!  I think all the excitement has caught up with us because a nasty cold virus has been circulating through our house over the past two weeks.  Needless to say, we have been having some quieter days and I have welcomed more TV watching.  Luckily the Olympics have been a great source of entertainment for all of us! 

Here are the highlights of our Summer 2012

Spending time at Grandmummy and PapPap's while we got hardwood floors installed on our first floor.

Strawberry picking with our cousins!

Learning how to push my wheels on my new floor!

Enjoying the water

And our fun family vacation with Grammy, Papa and our aunts, uncles and cousin Nora!

We pet goats at the zoo,

played lots of putt-putt golf,

played our hearts out,

And conked out under the stars after our long, fun-filled days. 

Yes, this summer has been great! Hope yours has been good too!

Birthday Boy!

Yikes!  I am a bit delayed on sharing about Isaac's birthday bash, but I have pictures of the cake attack, so hopefully the wait was worth it!

Yes, he LOVED it!  He didn't hesitate and dug right in.  His right hand was on continuous shovel and load for about 10 minutes!

Isaac says, "I love you daddy, but you can't have my cake."

My yummy cake

Isaac hanging out with Daddy and his Godmother (Aunt Annie)

Isaac and daddy dancing!

Three Generations minutes before 10:09pm, Isaac's "real" birthday!

We are so proud of you buddy!  Happy Birthday!

Day 30: All our buddies

When I heard the statistics that OEIS/Cloacal Exstrophy occurs in 1 in 200,000 to 1 in 400,000 births, my mind was spinning.  That means that each pregnancy has a .00025 chance in having a child with this condition. That means out of the 4 million babies born in the US each year, an average of 15 will be born with OEIS.  My child was one of those 15.   

I truly did not expect to find anyone that was going through the same thing, let alone a group of people.  My little online support group is awesome.  We may be a small group, but we are finding each other.  We support each other.  The other day as I was telling Dan about different children and their upcoming surgeries and he told me that they are like my nieces and nephews.  I thought about that.  He's right.  I want nothing but the best for each of those children, just like all of my nieces and nephew.


OEIS presents itself in different ways.  Some children have large spinal defects like Isaac, some have little or no issues with mobility.  Some have difficulty eating and need feeding tubes, others eat just fine.  But there are aspects that most have in common.  They all endure many surgeries.  These children go through so much and yet are so happy.  They are tough.  They are spirited.... They are miracles.  


 I have learned so much about everyday life from these parents.  I have learned about things I should expect in future surgeries and more.  I am really so thankful for this group and all of the parents.  I truly consider each parent in the group my friend.  


As I wrap up my 30 days, I want to finish with all of the families in our facebook group that have children with OEIS/Cloacal Exstrophy.  You all have been a positive support for us and you are all in my prayers.  Today, I pray for every family with a child with OEIS or cloacal exstrophy.  I pray for every parent, every child, every sibling.  I pray for healing for all of the children.  I pray for understanding for their siblings.  I pray for hope for their parents.  



Today I want to say a special thank you to everyone that has followed me along my 30 days of prayer.  I am touched that you have followed and prayed.  Thank you and Many Blessings to you all!

Day 29: Grandparents

We are so blessed to have amazing parents.  They are wonderful grandparents for our children.  Our sisters have all been rocks for us too.  We couldn't be more thankful for all of the love and support that they have given to us this past year.

They all accept our boys for exactly who they are and embrace their special qualities and talents.


Papa is such a good singer.

Grammie always finds ways for us to have fun!

Grandmummy gives us good play therapy.

Pap Pap entertains us for hours.

I am so grateful for our wonderful parents and support system.  They have paved the path for us so that our journey is smooth.  They have loved us all.  They have been great role models for us.  I pray for our parents and siblings.  I pray for their health and happiness.  Thank you for all of your unconditional love.