Vacation Pictures

Our Family



Brotherly Love




David's personality shining through





Nothing like the beach in San Diego



You Will Love Your Child and They Will Bring You Great Joy

I am part of a strange society.  One I did not know before David was pre-natally diagnosed with down syndrome.  I have on-line friends, people I have never met in real life.  And they mean a lot to me.  We know the same lingo, we share similar worries, we have a team of medical professionals, and we pray a lot for little ones being born or having surgery or being sick.

Recently another little boy was born.  He fought so hard.  His story brought back a rush of memories of when David was born.  Pulmonary Hypertension, blood transfusion, kidney's shutting down, fluid filling up the body, ventilator, oscilating ventilator, medications, and more medications.  But this dear sweet boy did not come home.  He did not get to see his house or his room.  His parents did not get to get up with him in the night or take him to doctors appointments or therapy appointments or worry about his future or how he would do in school or if he would live on his own someday.  And that is all they wanted.  They just wanted to love their son and be part of his life and the diagnosis didn't matter.  And this is always the case.

There have been some amazing babies that have passed away and not all of my on-line friends have children with down syndrome.  Some have children with congenital heart defects and some have children with feeding tubes and some have children with cerebal palsy and some have children with brain injury and some have undiagnosed medical conditions.  But we all have something in common.  We love our babies and a lot of the times we see past the diagnosis.  I am not going to lie and say the diagnosis is not part of our lives.  There are doctors appointments and therapies and stares and comments, but we really just see our children.

Every mother that has lost her child will tell you they just want their baby at home.  Two more mommies shared this week that they miss their babies so much (sweet William has been in heaven for two months and beautiful Kenzie has been in heaven for a month) and wish they had them at home to care for and love them, the diagnosis and the medical worries just don't matter. 

I know some people wonder didn't I have a pre-natal diagnosis, couldn't I have made a different decision.  Yes, I could have but we knew two things we will love this boy and he will bring us great joy.  And we were right and we feel blessed every day to have David be part of our lives, part of our family, and part of the community.
In loving memory of Jordan, William, Kenzie, Max, Gabby, Brielle.  Your mommies love you and miss you every day.  Your stories touched the heart of so many.

Recent Slice of Life

 Haven't had much that I wanted to post lately.  I was feeling overdue for some recent pictures of my little man, so here you go.

Practicing bearing weight on my legs

I love to make raspberries

I still love playing with rings

This may end up being my motivator to crawl

The zoo wears me out

Brotherly Love

The other day Zac said the sweetest thing ever, "David is exactly the little brother that I always wanted.  I hope I get to take care of him forever".  We have never discussed Zac taking care of David now or in the future.  We do tell him that David does things a little slower than some kids and he is well aware that David has some eating challenges and a bad heart.  So was it just some random statement or is it that he deep down is already seeing that David needs a great big brother in his life.  Right now I get such pleasure from seeing them interact.  David's favorite person in the world is Zac.  And Zac is very tolerant of a little brother pulling his hair and ears.  I am so lucky to have so much love in my life I thought I would share it with you in these pictures.

Leave Well Enough Alone

Clear As Mud

Decision by Coin Toss

The Roller Coaster Ride Continues

The Waiting Game

All of these could be titles for this post.  It is about the decision for David's heart surgery.  The cath showed his pulmonary pressures were down, a little.  The goal was under 4 with medical intervention, his number was 4.6.  So that started the discussions and so going on two weeks after the cath the discussions continue.  What is the risk/benefit ratio, that is the million dollar question. 

We will start with the risk.  If he did not have pulmonary hypertension and he had this specific open heart surgery, his risk of death is 1-2%.  With his high pulmonary hypertension the risk of death becomes 5-8%.  This may sound like a pretty low risk to you, but this is my baby's life. 

Now on to the benefit.  We are waiting for Chief of Cardiology to return from Disneyland.  But previous discussions have been that the benefit is undetermined.  There is a chance that the pulmonary hypertension is caused by the large VSD in his heart, but they do not know this for sure.  There is a chance that his feeding issues would be improved once the VSD is repaired.  There is a chance that things will get worse if his heart is not repaired.

Typically the team is certain that heart surgery is the best option.  Typically a child would be in heart failure.  Typically the risk would be low.  Have I said before that David is not typical.  I am not saying he is not typical because he has Down syndrome.  He is not typical for a baby with Down syndrome.  David was born with fetal hydrops and pulmonary hypertension these happen more often in infants with Down syndrome but not typically.  David does not have the typical heart defect for a baby with Down syndrome.  His VSD is not even typical the team had a tough time determining the size of the VSD as it presents differently in different types of imaging.

Maybe we should leave well enough alone.  Maybe we should let sleeping dogs lie.  Maybe we just need to believe that this is how his body functions best right now.  Maybe we should just let his mommy and daddy enjoy him for another year without worrying about these things.  Maybe someday it will be a clear decision and that will be the right time.  Maybe there is no right time.

Life Is a Roller Coaster

David is having his second heart catherization today.  I am so hopeful that this will result in a date for his open heart surgery.  If you have the time say a little prayer for a healthy procedure and mommy getting the answers that she wants now would be a great time.

It is the middle of the night and I am getting that feeling that you get before you go on vacation: a little excitment, nervous, anxious, stressed, etc.  I have been through this before so I know he will be fine.  I just want them to say he has responded to the Viagra and his pulmonary hypertension is under control and we are confident that he will be a good candidate for open heart surgery and he is going to be okay.  That is the bottome line, I want to know he is going to be okay.

They did throw another wrench into my plan yesterday.  The hospital that we go to is merging with another well known children's hospital, one that I don't like.  Originally we were told it would happen in September.  Yesterday I got the news that the last day to have surgery at our current hospital is May 16th which gives two weeks recovery before they would need to transfer patients to the other hospital.  So he has to be deemed ready for surgery and have a good possibility of recovery prior to the end of May.  I won't set up the surgery until after big brother's birthday and party so our window of surgery is May 9 to May 16. 

Otherwise we will have to wait until after the move.  Has your work place ever moved or changed upper management?  There is usually some tension associated with that change it is usually uncomfortable and awkward and there is a transition time involved.  Not the ideal time to ask for surgery in my opinion.  Then throw in that it is at the hospital that I don't like and it makes it even more uncomfortable for me.  I am an engineer.......I don't like change.  They are trying to reassure me that it is the same surgeons, doctors, nurses, etc but I know that there will be some effects from the move (I have too much life experience to be convinced otherwise, and I am a realist/pessimist which is not really helping).

So we take one step forward with today's procedure.  And we will have to see where our next steps will lead us.  I must keep my eye on the prize, my son being healthy and strong.

Happy Birthday Gift to Mommy

In the last two weeks David has been healthy, the first time since Thanksgiving that he has been healthy for so long.  It has helped everyone's sanity, OK my sanity.

Him being healthy makes such a huge difference in these past two weeks he has learned to clap and wave, thanks to Daddy and David's hard work.  And yesterday he got into sit all by himself.  Now he is doing it all the time so I can't really leave him alone for long because he doesn't know how to get back down to the floor except by falling over.

Happy Birthday David, you have come a long way.