Saturday, June 26, 2010

June 26th, 2009

A year ago today.....  June 26th, 2009 I remember it quite vividly.  I had been going for weekly ultrasounds starting at 19 weeks.  Owen, was quite the squirmer (so they told us) and the ultrasound techs kept telling us that they couldn't get a good "look" at Owen.  It wasn't until 2 weeks later when I was 21 weeks pregnant with Owen that I went for another ultrasound and they told us that our babys heart wasn't right.  Something was wrong...  We were sent to CHOP where they did an echocardiogram on Owen.  After, the echo they sat us down and showed us diagrams.  One of which a normal heart looks like and one of which Owen's heart looked like. Owen was diagnosed with Tetralogy of Fallot with Pulmonary Atresia.  We were given the option to terminate the pregnancy.  As many of you know us, that wasn't even an option.  God had knitted Owen perfectly the way he wanted him in my womb.  They told us that I would need to deliver Owen at CHOP and that after he was born he would undergo tests to confirm their diagnosis.  After confirmed they would do open heart surgery on Owen when he was just a couple days old to correct his sick little heart.  It was one of the worst days of my life....  As time passed the Lord gave me peace.  I choose to trust Him.  We prayed for healing for Owen and knew that the Lord's plan for Owen was perfect.  The rest of my pregnancy went by quickly.  We had many appointments for ultrasounds and echocardiograms, the doctors kept a very close eye on Owen.  When I was just about 37 weeks pregnant they induced me, 30 1/2 hours later on October 21st, 2009 sweet little Owen came into the world.  Screaming just as they told us he wouldn't.  He was whisked away to be stabilized and brought back for a very short period so we could hold him before going to the intensive care unit.  Owen didn't require his open heart surgery at birth, he was sent home from the hospital when he was 5 days old to be loved and enjoyed.  Little did we or any of the doctors know how truely sick Owen was..  When he was 3 months old he starting turning jaundice and had to undergo surgery to hopefully fix his little liver. Owen was supposed to be less yellow after having his surgery not more yellow.  As time went on Owen got sicker and sicker more and more yellow.   About, 3 1/2 months after his surgery Owen was officially completely healed.  The Lord took our sweet boy home to be with Him.  Little did we know that a year ago today we would have to face many many worse days.  We rejoice in knowing that Owen is healed, that he is in his maker's hands.  The God who gave him life and took his life.  I look forward to the day when I will be side to side with my little Owen worshiping God in heaven!!!

Thursday, June 17, 2010

Three weeks and going...

It seems like we are at the place that we will be for the rest of our lives. Well  how we cope with Owen not being here, that is. There are strange reminders here and there. The common, "I miss him" or "I want him back" and the occasional frog in your throat feeling. This is just how life will be for us. It's actually a good thing. It would be terrible if we were to ever forget we had this beautiful being in our hands and care for seven months. I think it will be especially difficult if we have another child and then thinking about how old Owen would be now and how he would be a proud older brother. Of course if we never lost Owen it's doubtful that he would of even had any brothers or sisters. Maybe a goldfish...MAYBE.

 It's been three weeks now since Owen left us and we are still waiting for his hands and feet plaster prints to show up at our doorstop. The nurse said that we would get them the next week. I emailed the bereavement program at CHOP to see if they can track it down for us and find out what's going on. It would be a tragedy if we did not get those and it would make me wonder what the heck happened to them!

 We are trying think of a good fundraiser idea to raise money to pay for Owens' memorial service expenses. Maybe like a spaghetti dinner or something? Any better ideas? I always wanted to try to do a raffle. Those always seemed fun to me. Anyone have anything cool they want to raffle off?

Going back to work wasn't too bad. All the Fathers Day commercials on the radio aren't something I really want to hear but, I'll just leave the radio off til Monday. Other then that it's been pretty normal. Of course there are the people who don't say anything and you wonder, "Do they know and aren't saying anything? or don't they know?"

I'm still working on getting the slide show and service up. I'm getting closer.

One question we get asked allot is, "When are you having more kids?" Which will be one of the subjects in the book that I'm writing entitled, "Things Not to Say to Someone Who Just Lost a Child." But since everyone keeps asking here goes...

 It's not that easy for us.
Ashley and I both have been testing for the Jagged 1 mutation that is the cause of Alagilles Syndrome. We haven't gotten final results but, preliminary shows that Ashley is a carrier. If this is true, then that means there is a 50/50 chance our next child has it. Now it could be not as severe as Owen's but, it could be worse. I don't his liver disease could of gotten much worse... Ashley has to get more blood work drawn for this and we might have to go to CHOP to do it. Which I think we can handle. We don't have many bad memories at that place... just one or two and we won't be going anywhere near that wing of the hospital. I know the majority of my time spent with Owen was in the hospital so why should it be a bad memory? If she does have it we are not sure what we or the doctors will do. Recommend checks on her organs maybe? She obviously doesn't have a severe form of it.

It's kind of ironic. When we would fill out "family history" reports. I was always the one with all the problems. We thought for sure I was the carrier.

So then what?
 Well we could do In-vitro which, is super expensive and not covered by insurance. But we are still not sure about our moral standings on that issue. In our case, they would have to grow embryos and do biopsies to see if they are carriers of the gene or not.  If we can get pregnant on our own are we really trusting in God with getting In-vitro?  Are we saying, "I'm scared God is going to give us another baby that will die from the same disease." Or did God bless us with the technology to take away these diseases at the expense of a child/embryo that was formed in a dish? When does your body get your soul?

Can we get pregnant on our own?
Yes, but we needed help from a specialist. We have to remember about Ashley's other gene mutation, MTHFR.{Ashley would like to specify at this point that everyone has genetic mutations; she is just lucky enough to know all hers} Which put her on bed rest for a few weeks and really made post delivery very scary.

That's where we are at right now... Not really sure! I know we would like another child and life is pretty boring without 'em and we ain't getting a dog.

Friday, June 11, 2010

Well yesterday we went to Bucks County Soapstone to design Owen's headstone.  They don't normally do headstones but, I think they did a really good job!  Let's not forget about the turn around time! We went there at 1pm yesterday and it was ready to be picked up today. Now we just have to get it in the ground...
Those are his actual sized prints that the nurse did after he passed.

 Getting his headstone made really felt good. I think it helps with the grieving process to get this kind of stuff done. I guess it's a comfort thing. Knowing this is what you will see everytime you go up to visit his site for the rest of your life.  It's weird to think that in 10 years when we go to visit the Angel Garden, how many more babies will be buried. How many more families will feel what we feel? To know what we are going through? Owen already had another neighbor buried next to him. How long till his whole row is filled?
And we think they have it bad but, in reality they're the ones who are much better off.

Sunday, June 6, 2010

Letting Go

I always dreaded the day when we would have to make medical decisions regarding Owens life.  Knowing how sick Owen was we knew there would come a day when we would have to.  When Owen went into cardiac arrest the doctors would come out with updates every few minutes.  They pretty much just kept telling us how long they were doing CPR on him...  We finally after about 20 minutes decided it would be best and go in and be with our little buddy.  We knew it wasn't good....  As soon as we walked in and saw him in distress we told them to stop and let Owen be at peace.  It wasn't but a minute or less that Owens heart rate and oxygen rate went completely down.  We never had to make a decision.  Ian and I both know that before we made our decision to let Owen go that the Lord had already taken him home to be with Him.  When we were in the waiting room waiting for updates Ian and I both felt this complete peace.  It felt as if the Lord was lifting us our souls. We knew at that moment the Lord had taken Owen to be with Him.  To be completely honest I am so thankful that the Lord took Owen.  The outcome would have been horrible statistically speaking after having CPR for 30 minutes.  I am so thankful that we can remember Owen as being a happy little baby his entire 7 months.  The Lord has been gracious to us.  Even if I try to remember Owen after he had gone home to be with Jesus I can't.  God has completely erased all visions of Owen after his passing from my mind.  We miss Owen like crazy I think we say to each other about 1,000 times a day that we miss him.  As much as our hearts ache they are so full of joy and thankfulness.  Only God can give us this joy and thankfulness that we have.  Thankful to God for being so gracious to us and blessing us with sweet Owen for 7 months of pure bliss with him.  Thankful that one day we will be reunited with him.  Thankful that he doesn't have to suffer.  Thankful to God for sending his son Jesus to die on the cross for our sins that we can one day live with HIM.  I have never felt the presence of God in my life more then I do now. 

I would love to do a Q&A for any of those that may have any questions for us.  You can either post them in the comment section or you can e-mail them to us at


Saturday, June 5, 2010

This is our last {and one of few} family pictures with Owen...

How I remember Owen the most...
{Both of these photos were taken by my mom}
We decided not to show any photos of Owen in the hospital on his last days. Atleast not ones where you can make out how sick he really was. We'd rather everyone remember him as the happy little boy he was.

Ok, so he doesn't look too happy in these pictures but, we just got home and we just found out we had to go back to CHOP. Would you be happy? {These are the last photos of Owen at home}

This face screams, "Don't mess with me. I have a Bugs Bunny Bandaid."

These are from 5/16. He was just in that mood for fun pictures...




I'm hoping to be able to put up the video from the memorial service up here as well as the slideshow. Hopefully by next week I'll be able to do that.
Thanks to everyone who came out to the Service. We had someone all the way from Massachuesetts come down just for the service. Simply amazing!  Someone offered us the rest of their week at an Ocean City condo so, we were there til today. It was fun and relaxing mixed in with lots of Owen moments.

Friday, June 4, 2010



Thursday, June 3, 2010

1 week

Owen it has been one week since you went to be with Jesus.  God continues to give mommy and daddy peace, but that doesn't mean we don't miss you.  We are away at the beach taking time to remember you.  It is sad being here without you as mommy and daddy were looking forward to taking you on your first vacation.  We love you and miss you.  You will always be our little Buddy.