A Few Updates

Since my last update I have been for two ultrasounds one at 14 weeks because I was just very anxious and afraid something was wrong, but everything was completely fine and then our scheduled 16 week ultrasound that we were supposed to find so much out at. Baby had other plans for us he/she decided to not show us much. haha!! I was so hoping to find out what we are having, but that didn't happen baby was sitting indian style and they couldn't see anything! Little stinker!!! So far though what they have been able to see on the baby looks normal! We go for our level two ultrasound on Jan 10th I will be 18 1/2 weeks and then on Jan 13th we go for our fetal echo. I am so happy to say that they now do fetal echos at the Chalfont CHOP! I was getting so anxious about having to go to CHOP in the city and then when I had my appointment with my midwife I asked her if there was anywhere else that I could go for an echo that she was recommend and she told me they do them there! I was soooo happy!! Yes, I am disapppointed that we won't be able to see Owen's wonderful cardiologist, but I really don't think I would have been able to handle going to CHOP. We would appreciate your prayers for the upcoming appointments.

Baby at 14 weeks:

Baby 16 weeks:

Since being pregnant I have been so unmotivated.  My In-laws got me a new sewing machine soon after Owen died and I used it a few times before getting pregnant.  I made two quilts and a couple other blankets.  I have squares cut for either a boy quilt or a girl quilt for this baby.  I am going to wait to see what we are having so I know which quilt I will be making.  I love doing crafty things, but if you know me I will not do anything unless my house is in tip top shape.  My house always comes before any extras that I want to do.  After seeing an ornament like the one below for an outragous price I decided to buy the materials to make one.  It saved me $15 making it myself.  The only thing is it took me over a month to get myself to make it. I am not completely finished with the ornament I still want to add ribbon to the top of it and I need Ian to spray the clear coat on it for me and I am thinking about putting something inside...?  Still undecided on that. 

Ornament for baby it reads "Expecting Baby Sirianni 2010"

 I decorated this little Christmas tree to put at Owens grave!  I was so excited when I came across this little tree.  It was exactly what I was looking for, for him!! 

I hope you all have a Merry Christmas!!!



Shutterfly

After losing Owen I was really dreading the holidays especially Christmas.  I remember thinking to myself I just want to go far away for Christmas and that I would most definitely not be doing much of anything that had to do with Christmas, Christmas cards included.  Especially since I wouldn't have any recent pictures of the cutest child that ever lived.  (I know I'm a little bias) Well, when I saw the fabulous deal that Shutterfly was offering bloggers 50 free holiday cards I couldn't pass it up and too, the fact that the Lord had changed my heart when it came to spending the holidays without our sweet boy, not that it will be easy.  With that said Shutterfly offers a HUGE variety of different holiday photo cards including some that are "religious."  I like my Christmas card to say "Merry Christmas" not "Seasons Greetings" or something vague like that.   I'm not sure how I am going to even pick our Christmas card, because there are so many that I love.  Shutterfly is by far my favorite online website for photo printing.  I have tried other online photo printing websites and the quality is no where close to the quality I get with Shutterfly.  I also, have 3 hardcover photo books from Shutterfly and I just love them.  I have never used Shutterfly for photo cards but, I know I have received them from others in the past and I must say that I was impressed with the quality.


Here is one of many of my favorite photo cards in the Shutterfly 2010 Holiday card collection:

(found here)

Then, you can get these cute address labels to go with your Christmas cards:

(found here)

Needless, to say if you haven't yet made your Christmas cards yet I would strongly encourage you to use Shutterfly.  I have always found Shutterfly to be easy to use and If you don't yet have an account you can sign up today and receive 50 free 4x6 prints. 

Surgery Update

My moms surgery went well.  They were unable to do it laparoscopically and had to make a 6 inch incision.  They started the surgery at 8pm.  She was in surgery for about 2 hours. She will be discharged from the hospital tomorrow.  Be praying that she will be able to get the rest she needs and that she will recover quickly.

I'm in my second trimester of pregnancy today!!  I am hoping I will get a little of my energy back.  I have been so tired and unmotivated, well and sick, but I'm not complaining!!  I will take all the sickness and tiredness for this sweet babe! 

A little scare

Last night November 15th I had an appointment with my midwife.  All was well except for the fact that she couldn't get the baby's heartbeat on the doppler she tried for like fifteen minutes.  She felt terrible so for my peace of mind she sent me for an ultrasound.  She wasn't at all concerned.  So this morning I went for an ultrasound and all is well.  The baby was moving all around and the ultrasound tech said that she was able to see alot more then last week.  She said baby has everything it should by now!  I always love seeing the baby!  The baby was measuring 2 days ahead which is encouraging because Owen always measured behind.  Today when I was in the waiting room waiting for my ultrasound this little boy came walking over to me he must have been about a year and a half and his mom said "Owen come back"  my heart melted.  That name is like music to my ear.  So precious.  I just wanted to scoop him up!! 

In other news you can be praying for my mom she was admitted to the hospital last night with severe pain due to a cyst on her ovary.  She will be having surgery tomorrow at 1pm to have the cyst removed.  Pray that everything goes well and that they can do the surgery laparoscopically and that they don't need a big incision.  Depending on the incision and how they remove the cyst her recovery time could be anywhere from 1 day to 8 weeks.  We are praying for the one day!!!  It is certainly hard being down when you have 3 little ones that need constant attention. 

So far so good

Mondays ultrasound went well.  The perinatologist said "Everything looks great."  The baby is measuring right on track and has a good strong heartbeat that is always so sweet to hear.  It is still early to see much of the babys anatomy.  My next ultrasound is scheduled for when i'll be sixteen weeks mid December.  That is the soonest that they will be able to see anything if there would be anything wrong.  Sometime around twenty weeks we will be going to CHOP for an echo on the babys heart.  Thank you for praying for us!!

Our little gummy bear

Thank you for rejoicing with us in our sweet news!  The baby is due June, 2nd 2011 about a week after Owens "Glory" Day. 

Please, be praying on Monday, Nov 6th we have our first anatomy scan on the baby.  I have had ultrasounds weekly since I was 5 weeks and so far everything looks good.  Although, at the Reproductive Endocrinologists they don't really look much at the anatomy of the baby except for the obvious things.  We will have monthly anatomy ultrasounds and an echocardiogram whenever I feel like I can handle that.  They wanted to do an echo around 13 weeks, but we are just about there and I don't know if I want to go to CHOP quite yet... 

Tomorrow we will be attending a service at the church where Owen is buried.  They are having a service and luncheon in memory of all the sweet babies that have passed this past year.  It breaks my heart when we go to "visit" Owen and there is another baby there.  I think there are like 5 or more babies that have passed since Owen did.  SO SAD!!

Help Portrait Philadelphia

This December Fourth I{Ian} will be volunteering my Saturday to help with the Help-Portrait project.
It's a gathering of photographers, makeup artists, and other volunteers to help the less fortunate get a self-portrait or family-portrait who other wise wouldn't have the money to get a professional to take their picture.
We'll have makeshift studios set up in Center City, Kensington and a few other spots in the Philadelphia area.
We are hoping to raise 500$ to help cover the costs of printer ink, photo paper, frames, flowers, and photo folders. We setup a fundraising site so people could help us reach our goal. If you would like to donate please visit the site at  http://www.skyraise.com/helpportraitphiladelphia
Or if you have 4x6 photo paper or 4x6 frames that you would like to donate please email me
Thanks,
                Ian

One year today...

Overdue

This blog post is long overdue...  I really wish I could get better at blogging.  Every now and then I think I should blog about this or that, but never do! 

What have I been up to?

I am primarily keeping busy with house work and projects around here.  It is amazing how the days fly by and I keep busy even without little Owen to consume a majority of my time.   

I am working one day every other week for only about 5 hours a day cleaning and doing projects, for a little extra spending money. 

My In-Laws got me a new sewing machine so I have been spending alot of time sewing up different projects.  I finally started and finished Owens quilt that I was going to make for him before he was born and it never happened.  Now, he isn't here to use it.. 


What ever happened with the Reproductive Endocrinologist?

Two months ago Ian and I did a testing cycle.  It was mostly me that had a majority of the testing done.  They do ultrasounds, biopsy's, bloodwork, and more bloodwork and more bloodwork.  I felt like I was at the RE every other day getting some form of test of bloodwork done. 

What were the findings of all of the testing?

Ian is a carrier for cystic fibrosis.  Although, in order for cystic fibrosis to be passed on to a child both mom and dad have to be carriers and I am not a carrier.  My biopsy showed that I had Endometritis and that my body isn't completely immune to the Varicella Virus (Chicken Pox or Shingles) they wanted me to go for booster shots which then I wouldn't be allowed to get pregnant for 3 months because it could cause severe birth defects.  I chose not to get the Varicella Booster I would rather just stay away from anyone and everyone with any sort of rash or fever my entire pregnancy.  I had a repeat biopsy for the endometritis the following month and the form of treatment they had me on worked!!  The endometritis is gone!!  I was so excited to get that phone call!!! 

Why did you go to the RE to begin with?

After, Owen died Ian and I decided we wanted more children and knowing that it took us a year and a half to get pregnant with Owen, I felt like I should see the RE to be sure there wasn't anything wrong that it had taken so long to get pregnant previously and to get on fertility drugs.  Also, the RE followed my pregnancy with Owen for the first 10 weeks and I wanted them aware of the fact that we wanted to try to have another baby as they will follow any future pregnancies for the first 10 weeks. 

Are you on any fertility drugs now?

I am not.  After, all of the testing it showed no reason for us to not be getting pregnant and they recommended trying without any drugs or medical interventions for a couple of months.  Although, they are more then willing to do whatever we want.  Be it fertility drugs or In-Vitro.  They will do anything in their power to see that we have another baby. 


Today Owen would be 11 months!!  Oh how the past 11 months FLEW by!!  He is missed dearly!!  I am planning on having some sort of first birthday bash on or around his first birthday. 

Update 3

The dr basically without saying it said its the medication causing everything. Sounds like good stuff. he is going to give him a pill to treat dizziness. He said to contact your dr to switch meds if symptoms still persist.  Oh what fun.

Update

The dr came in and is ordering a brain scan just to make sure its all good up there. They dont seem to know whats going on. His blood pressure seems to be back to normal. Could just be the side effects from his medicine or his kidney failing. Thats a broad range...  we are still waiting for the labs to get back.

Prayer

I got a call that my dad is in the er with low temp, low blood pressure, and an irregular heartbeat. He is on high blood pressure medication so, that might have something to do with it. Im waiting for ashley to pick me up from work to go up to the er. Ill keep this thing posted as i hear stuff. Its very hard for me especially to deal with this. Its like living owens last days all over again. Please pray for him and us. Thanks.

It came!! Actually, it came probably a week or two ago but, we are blog lazy. It hasn't been hung yet and is still on display on the dining room buffet table. That's where all our pictures sit until we find a place for them. I forgot to size down the picture to the right ratio before I sent it to them{you think they would make a note on their website about that} I guess it was close enough and they custom made it to a 16x24 just for us at no extra charge. Thanks Canvas People!

CHOP sent us a book today... It's a book of all the kids that have died there in 2009. Just to show us what they will be doing for us this year. Weird, I think. I guess you could use it as a prayer book to pray for each family that's lost a child but, it doesn't look easy to read. Atleast coming from our perspective. You put a picture of a child and then you have a whole page to write what you want to say about your child. It's atleast 300 pages long...

Has it gotten any easier? Nope, not one bit.

We are looking for one or two people who are good at coordinating events to help us with a project we have brewing. If you have some spare time and are interested email Ian.

I guess photo four won! We'll post a picture once we get it. Should be in September sometime.

VOTE!!

ONE

TWO

THREE

FOUR

FIVE

SIX

We are getting a 16x20 canvas print made and can't decide what photo to use. So post your favorite number photo in the comment box and the one with the most votes we'll get made.  Want to vote but, don't know how to comment? It's easy. First you need to sign up for a google account. This doesn't mean you sign up for a whole new email address and sell your soul to the devil and all that stuff. Alls you do is click on "google account" in the comments section;  enter your email address and a password and you are all set up to comment. Not only on this blog but any other blogspot blog out there.

                                       
I just saw my cousin has a blog with his cakes on them. Check it out!
Mark Joseph Cakes

I know we haven't really been writing much lately. That's because our computer crashed while I was trying to rip the funeral dvd onto the computer last month and we just got it back yesterday. It's running better than new now.
We went to the reproductive specialist a few weeks ago just to sit down and talk and make sure we are all on the same page. They told us that they would do anything we wanted them to do but, his recomendation was just to be closely monitored and to try to get pregnant without any intervention. Your chances of getting pregnant at our point in life is only 9%. Any shot they would give would only bump it up to about 15%. Which would do wonders if your 35 and your chances are only 3%. But they will be monitoring Ashley very closely when she is pregnant, ultra-sounds every week and Owen's cardiologist wants to see her at 13 or 14 weeks. She said it'd be great to see you again and have good news for you this time! Isn't that the truth! Both her and Dr. Loomes are still in contact with us and are just great. I don't know if or how they could treat all their patients like they treated Owen and us.

They have been conferencing over Owen's case at CHOP and our not sweeping it under the rug. Dr. Loomes brought up alot of our problems with how he was treated his last stay and how they can change things and do them differently. Like not letting him eat all day and moving him around from floor to floor.
We got his autopsy in the mail last week... According to that, Owen is the only case that is consistent with both AGS and BA. Which is hard to wrap your brain around! We know Owen is special but, that is a totally different meaning!

Hopefully now that we have the computer back, I can start back up again on the book and working on a few other ideas that have been floating around my head.

Update on the roof leak:
I went up and patched it temporalily. A builder I know is going to come and do it in the next couple of weeks...and I'm pretty sure he is doing it for charity. The price he gave us was half of what everyone else quoted and I know he is not a cheap contractor! Thank God!

Our friends at Allebach Photography {who we can't thank enough for all they did leading up to, and the day of the funeral} took photos the day of the funeral for us and they turned out great. I think we were the first wedding they did and the first funeral.

Alot of people ask me how I was able to keep it together carrying the casket out of the church and to the burial.
It really wasn't hard at all. It almost something I felt like I had to do. Almost a sense of duty.

9 months...

Love you Buddy

Yay

Owen's stone is in the ground!! I'm not sure why that is exciting to us but, it is!

Roof leak

We had a pretty nice surprise when we woke up this morning. There was water coming in through the bathroom door jam. We put a bucket down and thought at least its not the dry wall. Then the smoke detector went off which I knew meant there was water coming into the box. Pulled that down and put another bucket on the floor. Then we saw it coming down in the corner (see pic) to which I made the hole bigger to help drain the water faster but by then it was too late and water got down into the dining room bubbling out two seams about six feet both ways. Back up stairs another spackle seam bubbled out and leaked on the crib. Not fun! Not easy to fix either. Especially because it bubbled out on the wall. We'll have to repaint the whole wall so it matches and both ceilings. Needless to say we are getting this roof fixed this week.

Plaster cast

We got owen's plaster cast last week. It's not what we expected in a good way. It's really cool. We should of had them do his face. Our pc crashed last week so, as soon as we get that back we will have more to say on the trip down to pick it up and what else we are thinking about. Happy independence day.

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!!!

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.
                                                                      Ian

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.

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 ashgabash@juno.com

~Ashley

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...

5/9/10

5/1/10

4/30/10

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.