Getting ready...

Gavin has been on house arrest since we found out about the surgery date. Which means mommy and Gavin have pretty much stayed in their pj's for days now. Finding things to do for an active two year old is hard... but we managed!

Silly Boy!Bubble Bath with Daddy... Shaving with Grandpa...

Dying Easter eggs with Mom...
Getting goodies from the Easter bunny...
Trying on Grandpas shoes...

Chef Gavin makes a sandwich...

Wearing Mr. Potato Heads glasses...

Sing...Sing...Sing

WE HAVE A SURGERY DATE!!!!

Gavin will have his third open heart surgery on Wednesday, April 22nd. Gavin will have pre-op the day before. This morning has been an emotional roller coaster... we were told at 8:45 this morning that the insurance would not approve for us to go to San Diego. By 10, they had changed their mind, I just love insurance companies (NOT). Our wonderful pediatrician and his nurse put up a fight. Since the day we found out about Gavin's condition, we said we would do whatever it takes to get the best care for our son. Even if that means selling our house, going in debt, and flying across the country to get the job done. Needless to say, I have shed some stressful tears this morning. We really need your prayers... this is bittersweet and we have wished for this day to be here since Gavin was born, it's the end of one chapter and the beginning of another. We are so ready for this surgery to be over and for Gavin to have no complications. Thank you all again for the prayers, well wishes, love and support!

New Look...

DON'T YOU ALL LOVE THE NEW LOOK??!??

A BIG thanks to Kristen for nominating me for an "Inspirational Blog" makeover. Traci, a sweetheart and extremely talented, is doing "Inspirational Blog" makeovers and she picked Gavin's blog for this month! Thank you Traci, I LOVE, LOVE, LOVE IT!!!!

Mr. Clean

Pray for Reed

http://keeleyandryan.blogspot.com/

Sunday I received a text from Kelly letting me know that Reed was going to have surgery to reduce bleeding on his brain. Reed, who also had HLHS, spent the first 100 days of his life in the hospital waiting for a heart transplant. He received his heart and was such a trooper. This little boy is quite the fighter and I ask that you please pray for him and his parents-Reed also has a twin brother. Thank you prayer warriors!

Looking forward...

I went over to read the Davis Family Log and found this... God always sends me the right people at the right time. It is really hard to explain the emotions of preparing for your second child, when your first child's "normal" is not "normal". Thank you for helping me with my fears and concerns. Roberta, you are truly God sent!!!

Wednesday, April 01, 2009

For Faith
OK - I never do this! Ever! I have been following a blog of a family who's little guy also has HLHS. I have never felt very comfortable writing about people or even asking for prayers unless I know I have their permission. But...This post is not about them - but inspired by them. So Faith I am sorry for dragging you into this - particularly because we have actually never met. I want to describe how I felt about having Mari. I had a great level of fear when I first got pregnant. Bronwyn's cardiologist was excited for us and very supportive, which gave me courage. The first ultrasound cleared - whew felt a bit better. Next ultrasound cleared - whew - even better. Echo showed no problems - big big sigh.So then Mari was born. Apparently healthy and no problems - with the doctor's approval.How did having Mari affect me? Well, as the birth of any child we love her and we are thrilled to have her. But there is more. Not long after Bronwyn was born I started to long for another child. I would tell Wes that I just wanted to feel normal again. I just wanted to have a baby and take her home. I was mourning the loss of not having Bronwyn home with us but rather in the hospital. Having Mari has been one of the most healing experiences of my life. She has help heal wounds I didn't even know I had. My maternal desires and instincts were somehow restored and validated. Being able to bring Mari home only one day old and caring for her with no extra medicines or procedures was so liberating. We did not have Mari because we had problems with Bronwyn. We always intended to have three. We had her because we wanted her and we love her. I guess her birth has just given me more than I ever imagined it would. To me this has been a gift from God. He has blessed us so richly with her birth. She is not an easy baby - but she is good natured and wonderfully sweet. Our family feels complete now. I think of them all as my heart kids. When Gavin was a baby I prayed that he would be like King David and be "a man after God's own heart."When Bronwyn was born her heart lead us to new places, new faith and new understanding. When Mari was born she helped heal the wounds of my heart. God has blessed us with riches beyond our wildest dreams!

DO WHAT?!?

... My exact words after seeing this....

Ha.. that is how many I had to "go" on before I believed it!

All of you should know by now... I AM PREGNANT, but I thought I would share the story...I am going to be brutally honest, there were tears, tears and more tears. I was pretty shocked, to say the least. It wasn't a part of "our" timing. But what is? We have been through some things in the last 3 years that weren't "our" timing. We are constantly reminded that it is not about us, it's what God wants and has in store for our life. And to be honest, it has all worked out perfectly. I am amazed day by day how much God has blessed us and I really wouldn't change a thing about my life. We are definitely getting use to the idea now (being pregnant)... I have a feeling it will go by very fast, so much going on between now and then. My due date is November 7th, baby will probably be here by the end of October (c-section). So it looks like Big brother will share his birthday month with a sibling!

Gavin is so sweet. He says a prayer for the baby in "his" tummy every night. In fact, that is how my parents found out. At dinner Gavin said the prayer and thanked God for the baby. My parents looked confused and we started laughing and crying. My parents were shocked too! At our first ultrasound Gavin told Dr. N (my OBGYN) that mommy "ate the baby". I wonder where he heard that?? We had our second ultrasound on Monday. Baby looks great! Gavin didn't make it to that appointment because he was still recovering from his cath. So we didn't get any pictures. I do have ultrasound pictures, however, our scanner is not working right now. We ask that you pray for this baby and "his/her" health. We found out about Gavin's condition when I was 20 weeks. So the anxiety every time I have an appointment builds up more and more!

Gavin is on the mend, much better and more playful! We should hear from Dr. P in the coming weeks about a surgery date. It is definitely bittersweet. I wonder what life is going to be like with out another surgery "looming" over us. Pre-surgery is difficult for us... I think especially this time. Gavin is very aware of his surroundings, pain, discomfort. He knows when something isn't right and it scares me to watch him in pain. He is extremely verbal now and I just know that will be hard to deal with. We appreciate your love and support during this time!

Sorry for lack of posts lately, I haven't felt the best!

We are coming home!

Yesterday:


Today:

Gavin is a much happier camper today! He is glad to be coming home! Gavin is restricted to limited activity until we hear back from the cardiologist. He is in better spirits today, just really tired and not back to his "old" self yet.

Thanks to Elaine for updating and sending out emails. We appreciate everyones prayers!

Update Six

New text:

“Dr. just came in and since Gavin has kept his food down they will discharge him this afternoon. They had a conference this morning and decided that Gavin is definitely ready for surgery within the next few months. He will contact Dr. P in San Diego next week. Then we should hear from him shortly. Thanks for the prayers. God is good!” I’m still trying to get an update on Faith’s own health. I know being able to set a surgery date will be helpful for both Adam and Faith. It brings new concerns, but at least movement forward!

Update Five

Just got a text from Faith.

“Gavin is currently trying his first meal since the cath. Pray that it will stay down so we can come home today. He vomited every bit of fluid he had last night. He is also having a hard time getting around today. Not wanting to walk or move much. They have him on Tylenol this morning. Other than that, his stats are great!!!” So, friends… we know what to do!!

Update Four

I am SOOOOO sorry! Faith text again... and I forgot to let the rest of you in on it!

They are now with Gavin. She said that when they first got together, she and Gavin both threw up... (What a united family!! :-)Gavin is fine. He says his arm hurts, but he's getting gooood meds (morphine). At that time, he was watching Mickey Mouse and eating a popsickle. He's on bedrest til 1100 pm, but then they'll need to get him up for movement and coughing... has some lung clearing that needs to happen.
Plans are still to come home tomorrow.

Update Three

Elaine just got a text from Faith.

Doctors are finished with the cath. Pressures look good and ready for surgery this summer. Surgery needs to happen before Fall to avoid RSV season. They coiled the 3 arteries and will just keep an eye on the 4th one. Doc will call California with all the information and they will make surgery plans. Praise God this is such good news!

Update Two

Sending for Elaine via Faith

Faith called at 5:10. They found 3 extra arteries and coiled those off with goal of decreasing blood flow. They are looking at 1 more artery. Currently, the plan is still to just stay overnight. At this point, things look okay for the open heart surgery. It is better to find the extra arteries now than during the surgery. Keep the prayers going.

Update One

Copied from an email from Elaine:

Faith called at 2:23. They had just taken Gavin back.She was unable to go back with him, since she is pregnant. Gavin gets to choose the “flavor” of his initial anesthesia, and he chose “bubble gum”!The heart cath should take at least 3 hours, as this is exploratory to look at everything they can. She described herself as tense, as is her usual during these events. She also just heard from her dr that she has an infection, and will need additional medicine. So continued prayers for her health, as she’s still fighting nausea and now infection. There’s about 20 family and friends there, and they’re grateful for the support and distraction. Ps 119:76 May your unfailing love be my comfort, according to your promise to your servant.

Heart Cath

Just asking that everyone say an extra prayer for Gavin tomorrow... we will check in at noon for his heart cath. We will post updates tomorrow.

Just like Daddy...

Daddy has been out of town for a business trip and Gavin always misses him when he is gone! He goes in our closet and puts on Daddy's shoes, hats and sometimes his ties. I was able to snap this picture as he was coming out in the hallway with Daddy's shoes on.

Great-Grandpa Sam came in town last month for a visit. He came by to eat lunch and see Mr. Gavin. After looking at this picture, I remembered the one we took of Gavin and Sam when Gavin was a tiny baby... complete with matching overalls! Thanks for the visit Grandpa Sam!

Happy Birthday Papa Ron!!!

I love when you hold me...

Kiss me...

Vacation with me...

and most of all support me!

"I love you Papa Ron, Happy Birthday" Love, Gav

Happy 1st Birthday Paxton!!!

Gavin wants to give a shout out to his cousin Paxton... "Happy Birfday, Love ya dude".

Mimi & Papa's House

This past weekend Adam went to San Diego to help a friend move back here and I went to Texas for Kristen's baby shower. Gavin stayed at Mimi & Papa's and had a blast! Before we left we had to pre-fill syringes with all his meds... it dawned on me that he is on A LOT of medication!

Gavin had a great time, he played trucks and cars, ate popcorn, watched a guy on TV eat a bug and it was "yucky" and cuddled with Papa. It was so funny to listen to him tell me everything he did at Mimi & Papa's.

Other than that we have been at home, just hanging out, reading books and occasionally going potty in the big boy potty.

Gracie Gledhill

Gracie has been under our "Children who need prayers list" since the day she was born. Gracie was born with HLHS and has had some up's and down's since birth. Gracie recently had a heart transplant and her body rejected the heart. Please pray for Gracie's family, Gracie passed away yesterday morning.

Happy Birthday Grandpa Joe!

I love your kisses...

I love you even when I am grouchy...
I love when you play with me...
I love when we get to go places together...

I LOVE YOU!

Love, "Your Stud"

Painting, Meeting Max & V-Day...

We have been up to some fun stuff around here so I need to make a long post with lots of pictures!

One night we decided to have another "Family Fun Night"... this time we included my parents. We had a picnic on the floor by the fire place and we got out the finger paints! Instead of painting on paper we decided to paint our faces. Gavin got a little carried away and he was covered in paint!

This weekend we were planning on making a trip to see our nephew Paxton, of course his parents too... however, Paxton got RSV (please keep him in your prayers!). On the way we were going to stop and meet Max and his family. I am glad we decided to go meet them anyway! We have never met in person. Kelly and I talk on the phone, email, etc. As I have said before, she is such a kind hearted person. She is constantly thinking of other children and praying for them, even through her own trials with Max. We have a mutual connection, Kristen & Kim. So we had lots to talk about! We had a blast and it was so much fun to watch the boys play and interact. Kelly got a picture of the whole group on her camera. So I will post that when I get it from her. We had a great time J. Family... hope to do it again soon!!!

For Valentines Day we had a candle lit dinner at home. We had lasagna -from scratch, bruschetta, home made pizza, salad with olive garden dressing and lots of yummy desserts! We dressed up and had fun lovey songs playing in the background. I had two very handsome dates, but one of them decided to check out early and go to bed. It was a wonderful, romantic evening with two of the best men in my life!

We have a date...

March 26th, Gavin will have his heart cath!

Specific Prayer Requests before then:

*Prayers for Dr. S (and all medical staff) as he performs the cath

*Prayers for Gavin's stats to be normal during cath

*Prayers for Gavin's health and safety during cath

*Prayers for Gavin's pressures to be normal or low

*Prayers for no scar tissue

*Prayers that Gavin will be ready for his Fontan surgery!