Sunday, February 21, 2010

Hugging my boys tight, and taking their pictures too!

As some of you may have seen on my facebook, my sweet Libby earned her angel wings yesterday. She had come of ecmo on Tuesday, and I don't know what happened. I don't know if she arrested again or if she just wasn't oxygenating well and couldn't go back on ecmo. All I got was a text from her momma telling me she had passed. I will give her a couple of days, but I do want to know when her funeral is. We were tweaking our trip plans, adding an extra day so we could drive up there and see her before coming home. Now I don't know what we will do. This has hit me hard, I've known her for a long time, and I know Liberty was her momma's life! She was her only child and she devoted her life to keeping her well. I know she is in great pain right now and it kills me.
Also sweet baby Kelsey went home yesterday. This also hits me hard because it brings back what the geneticist told me. That Jax was a miracle because most DS babies with this severe medical problems dies in infantsy. I'm finding this to be quite true, as Kelsey is the 5th baby with severe problems to die that we know. A lot of DS kids are born with multiple medical problems, the ones the geneticist was talking about was babies that spend months in the PICU. The ones that can't get off the ventilator, the ones that hang on the edge for months. Ones like Jax. So I kiss him and thank God for 4 years with him, and a couple of other ones we know that were this severe. His buddy Gavin and sweet baby Bella, two more miracle DS babies that spent months like Jax did. And I apologize if I've missed anyone. Although we all know that all DS kids are miracles!! Many are born with heart defects, bowel problems, and airway issues. Then lets not forget leukemia, and now this blood disorder that Jax has, antiphospholipid antibody syndrome, is popping up in many DS kids!
So today we didn't do much but enjoy our boys. We played with daddy's new camera, doing a photoshoot. We are still learning a lot about the camera, it has a lot of buttons to figure out. So some came out with weird coloring or a little blurry, but we did get a lot of great pictures. It was a great first try. Here are a few. Warning, there are a LOT of pictures. Jax is especially hard to shoot, since he can't sit up and doesn't smile and look at the camera, but enjoy!











29 comments:

Gabe and Val said...

Those are so cute. Did Raymond do them? Sorry to hear about Libby. I hope you make it to see her family on your trip. Hang in there. love ya.

Denise said...

Who needs professional pictures!!! You guys did a wonderful job. Your boys are all very photogenic. Even Jax put some cute faces on for the camera. Love the one where he is lifting his head up. Good job Jax. I am SOOO sorry to hear about Libby. I was thrilled when I read that she came off ECMO and shocked to read that she passed today. I have been following baby Kelsey this last week as well and it made me cry when I heard that she had passed....I grew attached to her and her family so quickly. Life is so unpredictable and no one knows that better than you.....4 wonderful years later :)

sturpin said...

((Lacey)) I'm not sure I have the words. I wish I could take away Libby's Mom's pain, but I remember that after my son died there was a time there that I wanted to be sad. i wanted to feel the pain because my boy was gone. I was sad. I missed him. I hope Libby's Mom finds peace when she is ready.

Those are wonderful pictures of the boys. They are loving tributes of love.
hugs my friend...

Denise said...

I think we are shooting to come to Disneyland on that friday if you are still going that day. Let me know if anything changes but that is what we are thinking. Monday would work too for everyone but Joe as he works that day.

Tina said...

So heartbreaking to hear about Libby...really reminds us yet again how life is so unpredictable and how things can change from one day to the other. really need my son to get home from school fast so I can give him a big big hug.
As for the photographs....wow I am speechless, they are brilliant and I agree with Denise who needs professionals when you can do a job like this at home. I love all the boys they are all so photogenic, and I know it must be tough to get Jax to pose but he did a great job all by himself...

Bugg's mama said...

Oh, what a sweet Jaxson. I just want to smoosh him, he's so cute. I have a special boy, too. I really like your blog. I found just found it today.

Love, Bree

Jessica said...

These pictures sure made me smile! You can just see how happy your kiddos are. I just love the pic with Jaxsons little cheek smushed into the pillow.

I am so sorry for the loss of little Libby. I hope that her mama knows that so many of Jaxson's friends are praying for her to have strength at this time.

Kristin said...

Ooh, so sorry to hear about Libby. When the time is right, send her mom our sympathies. Great pics of the kiddos!

Anonymous said...

Cute kids!!!! We were in SLC last week to see my Dad who is in home hospice care. Dropped by Hogle Zoo and passed all the UofU medical facilities....thinking of you and Jaxson.

My teenage son, the Buddhist, did his best not to kurfluffle his uber-Mormon grandparents with his beliefs about the dying process.

Jenefer
San Jose Mom

Deqlan said...

So sorry to hear about Libby, how very heartsore
Just saying hi and letting you know the pics of your boys are absolutely gorgeous

Emily said...

Oh, my heart breaks for these families who have lost their angels.
My prayers are with them...
You guys do great photography! No need to go professional!

My name is Sarah said...

Lacey this is Joyce. Such great pictures of all the boys. You are a professional already with that camera.

I've been sitting here crying all morning about sweet Kelsey. She was born 20 years after Sarah almost to the day and has had many of the same complications, so I have been following her like I was reliving Sarah's life. My heart is just breaking for her family. And her big brother. It makes me realize once again how lucky we have been to have Sarah with us for 20 amazing years and how grateful we must remain.

mandd3 said...

The pictures are wonderful. I am truly sorry to hear about Libby. Kelsey was the first baby I knew (I hesitate to use that word because my contact with her parents was so minimal - but I can not think of a another one) that didn't make it. I am glad you are enjoying your kids and taking it easy.

The VW's said...

My heart is so heavy for Libby's and Kelsey's family! I can't imagine the pain they must be feeling! Especially having spent so much time in the hospital and caring for their sweet girls and then having to say goodbye to them way too soon! I will be praying for them!

Those pictures are AMAZING!!! I love how you hung a sheet up and everything! Those look professional! I'm going to have to try that one day...I despise bringing our boys in for pictures, they despise it too, so doing it at home would be tons better! Plus, I know that Gavin will do better if we do them at home. Thanks for inspiring me to get on this.....hopefully ours will turn out half as good as yours did! Did you get any with all 4 boys? I'd love to see a picture of all of them together! What a handsome bunch!

Keep hugging your boys and loving on them! Life and children are such a gift! I'll be hugging mine tighter today too! Love and Hugs!!!

Rochelle said...

Please pass on our prayers to Libby's mom.

What a great photo shoot of the boys.

Anne and Whitney: Up, Down and All Around said...

So sorry to hear about Libby and Kelsey, how devastating for their families!!!!
love the pictures with your new camera!!! glad you were able to enjoy your boys for the day and take pictures and hold them close!!!

Ruby's Mom said...

Those are super pictures!All of your boys are just absolutely beautiful!
Praying for Libby's Mom and keeping Mr.Jax in all my prayers.

Maureen said...

So sorry about your friend's daughter. Lifting her family up in prayer.
The pictures were incredible - if you hadn't said you tok them I would have assumed they were professional!

Jeana said...

Oh that just breaks my heart. I was so happy to hear that she was off ECMO. Those pictures are priceless...and Jax is my hero. We're still in the PICU. They extubated Kaelyn yesterday and she's not doing the best...they need to put chest tubes back in so they might have to intubate her again for that depending on how she does. Back on the ICU rollercoaster.

Adam, Jaci, Grant and Grace said...

So sad to hear about Liberty. And I agree with you that Jax is a miracle! Love the pictures...what handsome boys you have!

jjpsmommy07 said...

great pictures! sorry about Libby.

Team Carter Jay said...

I'm so sorry to hear about Libby.
:(

I love the pics :) Excellent job!

Sakura said...

Those pictures are adorable! I'm sorry to hear about your friend. It's always hard to lose a brave little warrior.

Evie's Story said...

Awwwhh...you got some GREAT ones! Simply precious!

Heather said...

Love the picture and love you guys.Wish I had the words for you and your heavy heart.I have all the questions you have but know that the questioning won't help but prayers certainly will.Can't wait to see you.Till then,walk on my friend,you are doing great.

Sasha said...

I am so sorry to hear about the loss of the little ones. It is heartbreaking. Going through the loss of my mom right now is tough and I couldn't imagine going through it with a child. I love the pics they look great. Ps. in regards to your comment on my blog..don't worry about missing what happened with my mom. You are a great friend and we catch up when we can. Life is busy with our little ones so I totally get it missing posts as I have to do that too. Hang in there. Sending you hugs at this hard time. It is so true...our little ones are so precious. I don't miss a moment to spend hugging and kissing Wysdom as I know I am luckly to have him.

Mama Mason-Mann said...

So so so sorry to hear about Libby. Truly heartbreaking.

The pictures are awesome!!! Such handsome boys!

My Three Sons said...

What cute pics of the boys. Did you do those yourself? Looks pro to me! That is very sad about Libby. Hopefully her mom is feeling God's comfort during this time.

Michelle said...

so sorry to hear of sweet Libby's passing :( my prayers go out to her family.