The Sirianni Family

Two Weeks Ago

2012-02-07T08:19:00.001-05:00

As I reflect back on two weeks ago today I remember walking into CHOP on the morning of Coles open heart surgery. I was carrying Cole into the hospital and he had a huge smile on his face and was kicking his legs, he was so excited. I thought to myself "Oh buddy if only you knew..." I have to believe that he was probably thinking to hisself "Oh mommy if only you knew that I am going to go be with Jesus and Owen today..."

Oh Cole, Momma misses you dearly sweet boy.

Missions Trip

2012-02-02T19:30:00.000-05:00

We have been invited by Lambat Ministries to go to the Philippines from February 22-March 5th.
We will be photographing different aspects of their ministry, for use on a new website, for promo shots, publications, etc. We will also be giving the executive director a crash course in photography with the purpose of her being able to keep updating things as time goes on. We both are really excited about this opportunity. The 23 hour flight...not so much.
Below is a summary of Lambat Ministries:

We (Lambat), teach, train and equip pastors and teachers there with
free teaching/training seminars and free Biblically based materials to
participating churches. We reach about 15,000 or so people. It's
huge. It's expanded so much that our materials are now getting into
public schools and local governments cause there's no separation of
church and state there.
We have materials from pre-K through 12 grade. We have courses
specifically for pastors and teachers. And for pastors, seminary type
courses.
We promote Bible clubs,which are weekly, or twice a week 'sunday school' type things in the
community.

Thankyou

2012-02-02T11:25:00.001-05:00

Thanks to all who have been so supportive of us in the last weeks. Helping get Cole's service together in such little time, food, financial support, food, emotional support, food, cards, food, flowers, and more food...
Special thanks to the William Penn Inn and Village Caterers for providing the luncheon and planning it before we even thought about it!
Suess and Sadler Funeral Homes for providing their exceptional services totally free. Preplan your funerals with them.{seriously}
And thankyou to the random person who gave the funeral home an extremely generous tip. Thankyou.

2012-01-25T18:39:00.001-05:00

Cole's memorial service is going to be at Branch Creek Church on Sumneytown Pike in Harleysville, on Friday January 27th at 10am. There is no viewing. Thankyou.

1

2012-01-24T17:08:00.001-05:00

For those who haven't heard, Cole is with his brother Owen.

Pray

2012-01-24T12:49:00.001-05:00

Cole isn't doing well. They are taking him to the Cath lab to see why his oxygen is so low. We need a miracle.

Update 2

2012-01-24T11:23:00.001-05:00

Still in. Doing well

9:45 update

2012-01-24T10:01:00.000-05:00

We just got our first hourly update. They just finished prepping him and opening him up and are about to start with the repair.
Cole did great. Everyone can't believe he didn't cry at all while they checked his vitals and did all that stuff. Our cardiologist came by right before he went back with anesteia. We went up to talk with Cole's surgeon and he explained what he planned on doing. Pulling out the shunt they previously put in and add some conduits to his PAs hoping to help them grow. More in an hour...

Pre-OP Visit

2012-01-23T18:02:00.000-05:00

We are sitting in our room at the RMH while Cole takes his first real nap of the day. We had a crazy morning of packing and getting the house in order to leave for the next week or so. The appointment was at 2pm and couldn't have gone better. One of Cole's surgeon' minions came in and explained everything we needed to know about the surgery. Up until talking to her we both were pretty in the dark as to what they were going to do or even what the options were. She made sure we understood everything and how they do it all.
We have to be at CHOP at 6:45am for his visit. I think they'll take him back to the O.R around 8-8:30. Not really sure how long it'll be. His first surgery was 5 or so hours so this should be that if not longer.

When we got back to the car, Cole fell asleep while nursing, Choked, threw up, and then dropped his head and fell back to sleep twice. Scared the crap out of both of us. We've seen that look one too many times to not freak out.
And... Here's a clip of Cole enjoying the snow. He really loved it...

Surgery update

2012-01-14T19:52:00.001-05:00

Our internet has been down for over a week now and haven't had a fast enough connection to get a good update in. Cole's second surgery has been set for January 24th. He'll have his pre-op appointment the day before. This surgery is a more proactive step to hopefully help his pulmonary arteries to grow. If all goes well; we should only be in the hospital for four days.
In preparation for his surgery we are being extra, extra careful about germs and will unfortunately be missing the baby dedication at our church this time around. Hopefully, next time.
Cole is doing so well as you can tell from the pictures. All he ever wants to do is stand up on his legs.
Thanks for your continued prayers and we will update you again on the 23rd.

Christmas photos

2012-01-14T19:33:00.004-05:00

Seven Months

2012-01-09T20:40:00.002-05:00

I know we say it every time we put up bear pictures, but seriously how is it possible that Cole is 7 months already.. Cole is actually now 7 months and 9 days old!!! Owen went to be with Jesus when he was 7 months and 6 days... Cole is such a sweet baby. He has quite the personality. He's very serious, but if you try hard enough you can get him to smile and giggle. He is a mommas boy for sure... More and more everyday!!! He is so over laying down and always wants to be sitting up!! After he is 6 weeks post op from his open heart surgery I am packing away his swing and bouncy seat. He has been also standing up alot, of course with us holding his hands. I am wondering if he will skip the whole crawling stage due to the fact that he won't be able to be on his tummy or put pressure on his chest for 6 weeks after his surgery. We started him on baby food about a month ago and he just started to somewhat like the rice cereal. He still isn't too sure about everything else. I am super cautious with what I give him because of his dairy allergy. He is still getting up 2 times in the middle of the night to nurse, but he does go right back to sleep.

2011-12-25T09:35:00.000-05:00

Merry Christmas Everyone!

Recap from our day thus far

2011-12-14T16:49:00.001-05:00

We got up at 4:30am to get to CHOP at 7am for a 8:30am catheterization. Cole had to be NPO from 5am this morning and was such a champ!! Cole was so good for the nurse he let her do everything she needed to do without crying. They gave him giggle juice to help make him a little loopy so that he wouldn't get so upset when they put his IV in. He only cried for like a minute when they put his IV in. All the nurses thought that he was the cutest thing!! Yeah, I agree... They took him back for his cath right at 8:30am. The team that took care of him through out the cath said that he was giggling and cooing all the way back to the cath lab. Little sweetheart!!! We got our first update at 10am. That's when they told us that they were having a hard time getting access. They must have gotten access soon after that because at 11am our next update they said they were ballooning his Left Pulmonary Artery because it was so small. At our next update at 12pm they took us into the conference room to meet with Dr. Gillespie. We waited there for a good 40 minutes if not longer... I was getting very anxious. Thankful the nurses came back and kept giving us updates. Dr. Gillespie got pulled for another emergency. The nurse then came in and told Ian and I to just come back and be with Cole because he was so upset. I walked in the room and they practically threw him in my lap to nurse. He was very groggy, but very unhappy. He nursed and nursed and nursed. He didn't want me to put him down. I held him for quite awhile. Finally, Dr. Gillespie was able to come in and talk with us. We didn't get the best news... but, it certainly could have been worse.... Cole will need to have another open heart surgery ASAP. I'd think soon after Christmas and as soon as Dr. Spray has an opening. If you remember from Coles first open heart surgery. Cole will not have his full repair this next surgery. They will need to cut open and patch his pulmonary arteries. His cath showed that his PA's are very small and they haven't grown almost at all since birth. There wasn't much that Dr. Gillespie could even do in the cath lab. He did balloon his left pulmonary artery some. There was concern that they had lost the pulse in his venous artery where they got their access from. Cole had to have a ultrasound so that they could get a better look and see if there are any blood clots. If there is any issues with either he will need to start lovenox injections for 6 weeks. I am praying there are no clots and that the pulse will come back on its own without needing to do the injections. Since they did some ballooning we need to stay overnight and should be discharged first thing tomorrow morning. Cole is back to his normal self except for when they did the ultrasound and had to press on his sore groin. Poor guy!! They gave him tylenol and I nursed him after they were done with the ultrasound and now he is sleeping soundly. We got to see both Dr. Natarajan (Coles cardiologist) & Dr. Loomes (Coles hepatologist- liver dr) Dr. Natarajan had suspected that Cole would need this surgery and Dr. Loomes just came by to see Cole since she knew he would be in. Cole had liver labs drawn yesterday along with his pre-admission labs. Dr. Loomes looked over his labs and she was thrilled to tell us that Coles liver is PERFECT!!!!!!! Praise GOD!!!!! That is the best news!!!! While I am sad that Cole needs to have another open heart surgery so soon I am also thanking God that there are surgeons that can fix things like these and that Cole is such a healthy little guy otherwise!!!!! Well, I need to wrap this up. Cole needs to go for an x-ray to be sure where they did the ballooning still looks good and that he isn't having any internal bleeding. We need to stay the night tonight which I came expecting to happen. Ian, was able to get a room at the Ronald McDonald House. Another praise. I called and they originally told me they didn't have a room and then the RMH manager called me and told me they did infact have a room!! Yay!! The nurses acted like they like to get everyone in the CPRU out of here by 10am!!!

Thanks for your continued prayers for Cole and us as we continue to walk this road of trying to get Cole's heart to funtion as normal as it can.

11am

2011-12-14T11:08:00.001-05:00

They are going to balloon his left pa.

Heart cath

2011-12-14T07:50:00.001-05:00

Cole's ready for his cath.

Cath Time

2011-12-13T18:58:00.000-05:00

Cole's heart catheterization is tomorrow morning at 8:30am. We need to be at CHOP by 7am. It will be a very early morning tomorrow at the Sirianni household. Cole's pre admission testing today was crazy it took 2 1/2 hours and then the car ride was just as crazy there were accidents everywhere!!!

Thanks for your continued prayers for Cole!

Heart Catheterization Scheduled

2011-12-10T20:54:00.001-05:00

Cole's heart cath is scheduled for Wednesday, December, 14th. We appreciate your prayers!! We will keep you updated on the day of his cath!

ENT Appointment

2011-12-06T20:18:00.001-05:00

Yesterday, I took Cole for an ENT appointment and he was supposed to have a hearing test, too. Cole had fluid in both ears so the doctor wants to see him again in 2 months, although the next opening wasn't until April 20th. Uhh.... Like 4 months.. Anyways, if the fluid doesn't resolove itself by his next appointment he will need to have tubes put in his ears. They were unable to do a hearing test due to the fluid in both ears. It was a super quick appointment! YAY!! We were able to go to the CHOP in Chalfont rather then having to drive to Philly. It is always nice when we have an appointment close by and don't have to drive an hour there and back. It doesn't take up the entire day!

We still haven't heard from CHOP regarding Coles heart cath. When we have a date on the calendar we will let you all know.

Thanks for your continued prayers for out little/big guy!

2011-12-05T20:53:00.001-05:00

2011-12-01T21:15:00.001-05:00

6 months old!

Oops!

Thanksgiving with the family

Eating food already!

2011-11-29T20:16:00.001-05:00

Today Cole had a routine cardiology appointment and echocardiogram. Dr. Natarajan was back from her medical leave and it was so nice to see her. Overall it was a good appointment, although Coles pulmonary arteries are growing at a very slowwwww rate. Cole will need to go in sometime in December for a heart catherization to get some better imaging of what exactly his pa's are doing and some possible ballooning of his pa's to help stimulate some more growth. Cole his now up to 16lb 3oz and a little over 25 inches. Stinker wouldn't let the nurse get his vital signs he screamed and cried and threw a phit when the blood pressure cuff was on his arm, it wasn't even taking his pressure and the second the nurse took it off he started smiling and cooing. haha... Six months tomorrow and he knows what he likes and doesn't. Cole has quite a few appointments coming up. He has to get his synagis shot on Thursday and then next monday he has his follow-up ENT appointment and hearing test a pre op appointment before his heart cath and his heart cath. Dr. Natarajan acted like it would be no longer then a 2 day hospital stay as long as there are no complications. Depending on what they do he may be able to go home the same day! Please, pray that Cole will stay healthy and that his heart cath will go perfectly without any complications. Oh, and that his pulmonary arteries get the memo and GROW!

Rsv season is here!!

2011-11-01T19:34:00.001-04:00

2011-10-31T21:28:00.000-04:00

5 months already???

2011-10-24T21:54:00.001-04:00

We went to Willow Creek Orchards this
past Sunday so Cole could get his
pumpkin patch pictures...

"The eyes"

Already modeling

As you can see Cole is doing really well.
He's starting to tolerate tummy time and
might actually start to enjoy it soon.