1/30/11

9 mths old!

I can't believe my sweet baby has now been longer out than in!

David is such a joy to me.  He reminds me each day that life is wonderful, as I try to view things as he sees them and enjoy each wonderful experience life has offered him.  Thinking back on his journey I see how easy it would be for him not to smile, to shut down when things get loud, he's touched or worked with.  He's my hero.  He has been through so much but chooses to smile.  

When he first came home he'd cringe when we touched his feet, he'd cry when he was jostled by his adoring siblings.  He'd jurk away if I tried to hold him close.  It's been an amazing, albeit painful experience watching him learn to trust and try.  If he's in his bouncer and the kids are overwhelming him he'll crain his neck around till he finds me.  I'll look over and he'll be giving me this "save me mom" look.  As soon as I take steps towards him he calms down.  I can kiss all over his feet and belly without him startling or crying.  In fact he now kicks and coos.  He hated baths and water at first but now loves them.

 There are still times when I see he needs reassurance.  When I work to feed him I can tell he hates it. I can tell a part of him wants to cry.  He looks up at me with his big, deep, soulful eyes and looks for reassurance.  "It's ok" I tell him.  "Just try."  With a somewhat disgusted look on his face he'll take a few little bites or lick around the bottle nipple.  It's been such a learning experience.  I try to read his cues.  How much pushing is too much and will push him back into the safe shut down place he has used to cope.  How much guiding does he need to help him try the things he's grown accustomed to living with out.

 David is amazing.  He brings a warmth, a strength and a deeper perspective on life.  The other children feel it too.  We had a family home evening lesson the other night.  Andy taught about families.  During one point Andy asked each child why they thought Heavenly Father wanted them to be David's big brother or sister.  The Spirit came so strongly as each of them talked about how much they love David and how God knew they would love him and take care of him.  They cheer for him and play with him.  They keep him company when "he's lonely" (as Anthony calls it).  Jentrey is the queen of washing out medicine syringes.  It's her favorite chore, she says.  Luke and David have become amazing buddies as Luke trots his little Lego men all over David.  Caleb can just walk by and David will start smiling and cooing, trying to make him come play!

It is hard at times.  Luke has gone through phases of shouting "not two babies!" when I try to rock both him and David.  Jentrey has made the comment "It's hard to have a sick baby."   I am grateful that they know it's good to share their feelings with me.  We have been very open with them through everything and as much as I wish I could've guarded them from the unnecessary worry and heart ache, seeing as things have works out so miraculously, I feel the strength they've gained through this journey as well.  There is a purpose David has his special needs, if we were not to experience all these things then David would've been healed.  We had so may praying and pleading I know the faith was enough.  This is how it's supposed to be and we are learning new things each day from it.  Some very painful things and some things that are so much sweeter than we've ever imagined. These past 9 months have been the most memorable of my life.
 David and his favorite foot! : )
 His sweet content look.
 His "I'm full and happy" face!
 Sweet playful eyes!
 He loves his chick!
 I call this his "I know more than you'll ever realize" look.
 Chillin with that foot again.
 Sleepy boy!
Laying on the blanket I had as a kid.
 Scars healing and pacemaker seeming smaller.
 He's getting so big!

1/26/11

Two of my favorites!

Sweet David!
This is David eating a Dorito..OK licking one! They say the more pleasant experiences with his mouth the better. We want his oral aversion to be history! Oh , and the white stuff on his face is moisturizer. He has the WORST DRY SKIN!

Davester




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Our sweet boy!

 David will be 9 months on Friday! It's a mile stone that I couldn't be more thrilled to reach. I recently read that 80% of Heterotaxy babies don't reach their first birthday. He has been doing so well, I feel humbled and grateful as I marvel at the life David has lived so far. Each day is a blessing; it's own miracle!

Davis still has no teeth. It's typical for our kids to get their first teeth around 9 months. It's been nice, since I can give him things to chew on and not worry too badly about him biting off chunks and choking.
David's tear ducts are still blocked. 90% of ducts blocked since birth will open on their own by age one. We have three more months! I pray they will open. If not David will have to be put under for a tear duct procedure. It's super minor for normal kiddos but with David's special heart no procedure would be best.

1/24/11

David's doing great!

David had his cardiologist apt. yesterday.  His pacemaker is working well and hasn't picked up any crazy rhythms.  His Glenn is wide open and working well, no narrowing or clotting in his heart.  He was able to get off his med for reflux and one of his diuretics.  I was able to tell the doctor that David sat up for the first time this week, and last week he started rolling from his tummy to his back!  YEAH!!!! David is just blowing us away with his sudden leap in skills!  He still screams when I give him tummy time but when on his back he kicks, twists and turns sooo much.  He has been so much more active that he hasn't put on any weight.  In fact he's lost 9oz.  We are gradually uping his feeds to 1200 mls from 880 mls, daily!  He'll be a lot fuller!  Unfortunately I think once he's 9 mths I'll only be able to keep up with a little over half his milk supply.  I don't look forward to having to supplement with formula but he has to eat something and I just can't pump enough for his needs.  Most babies at his age are eating real food more and cutting back on milk but since he hasn't mastered eating food he'll just have to have extra milk for now.

David has been on continuous feeds at night since he came home at 3 months.  Fortunately or unfortunately his g-button started leaking big time last week.  3 nights in a row he woke up soaked in breast milk because it had leaked out of his button.  When I feed him in the day I use a shorter gravity fed tube.  I can hold it a certain way and it won't leak.  So after nights of David waking up screaming and wet I decided to just wake up feed him instead of using the pump that pumps milk slowly into him all night.  He wakes up like clock work at 2 am to eat but wonder of wonders, will then sleep till 8 am without food!  We are keeping him off the continuous feeds from now on.  It feels so much more normal!

We are so thankful for each moment with our little guy!  Hopefully spring will come soon and we'll be able to share him with the world!

1/15/11

Fun times in January

Anthony turned 7!
We had a great time celebrating Anthony's birthday with Garandmama, Oompa, Aunt Bekah, Aunt Angela and cousin Evan.  Anthony said he was so lucky to be able to have everyone come for his birthday!
 Anthony has grown up a lot this year.  He had officially decided to go by Anthony instead of Gabriel.  It's taking some getting used to but I think we're finally getting it.  It's so cute to hear Luke shout out "Ant-knee!"   Anthony has gone from slowly sounding out words to flat out reading and doing it quite well, in just a few months.  I wish I could take credit for it, but it was his late night reading with Caleb that helped so much.  One day he started reading to me and I was like "since when do you read this well!"
Anthony is one smart kid.  He always surprises us with his deductive reasoning and his quirky sense of humor.   He is very obedient and loves to remind me of things I've forgotten.  He has one killer sense of
justice and fairness.  He is good at saving his money for things he wants.  According to my parents I was the one at our house that remembered everything and loved to save my money, so Anthony's habits are quite endearing to me.  I just get him! Anthony has three brothers.  I'm always surprised how diverse they can be.  Anthony loves to talk and loves to figure out how things work. This year we had to call Oompa and ask him how gasoline makes a cars go.  We've looked up numerous things online just to quench his curiosity.  His vocabulary just makes me laugh, in a good way!  He likes to speak like a grown up. Recently, when I asked him to pick up some stuff in the hall and then was getting on to him for not finishing he chore he said "I will finish it ALTHOUGH you keep giving me things to do that are not my RESPONSIBILITY.  He just makes me laugh and smile all the time.  He's always saying random things that he's been pondering about.  Recently he has decided to read the scriptures on his own, each night before bed.  He's very self motivated, just like his Dad. I  love him so much and am very proud of him.  Happy 7th birthday to my Anthony!  Thanks for making life a delight!

Grandmama with cousin Evan. (Angela's newest)
Oompa reading to the kiddos from his nifty Christmas gadget.

Our latest news about David includes the fact that he won't touch his baby food anymore.  I have resorted to letting him suck on just about anything!  He even bites off pieces and thrusts them out of his mouth with his tongue.  Hopefully he'll get the hang of actually eating them one of these days.  He is also trying to cut his first tooth!!!
He's not sitting up yet but it will happen pretty soon, I think.  His next cardiology apt is on Wed.  They will tell us if his heart is doing ok.  also David's g-button has started leaking like crazy!  His clothes were totally soaked with breast milk last night and pretty soaked the two nights before.  We have an appointment with the GI surgeon to replace his g-button on Tuesday.  It's just and quick switch out in the office so it shouldn't be traumatic for David.  Those two appointments added to the ECI appointment and Pulmonary appointment this week makes for a busy few days.  I don't mind, just praying for good news!!!
David getting sweet Gradmama cuddles.
Oh! We got some snow the other day!...ok ok, just flurries that soon turned to slush in the sky, but still!
Yes, that's my diligent Anthony still trying to dig to China!

1/12/11

CHRISTMAS BESTS!


Jump-roping Jentrey!

Chick magnet!

Quick family photo!

Christmas tradition!
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zoo


David did great at the zoo!

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WHAT ANIMAL DO YOU JUMP LIKE?





random!

Dennis the...


He looks the part and just sometimes acts the part!

We took a family trip to the zoo.
Santa brought the kids a zoo pass!
Something we can actually do with David! No enclosed germy places!


Luke was so little last time we went, it felt all new.

Jentrey is FIVE!

My beautiufl baby girl turned five last week!
What a wonderful blessing it is to have a daughter.  I love her more and more each year.  She is turning into such a little lady.  Her spunky, determined little personality has gone from hard to helpful most days!  She's a strong girl who knows how to get things done. Jentrey is one smart little girl.  As I've been busily helping David she has grown attached to books. She will practice reading them for an hour at a time!  She begs me for school work!  
Jentrey is kind and caring.  She loves to talk with me about what she'll do when she is a mom.  She is quick to bring David his blanket and sing him a little song.  She is gonna be a great mother one day.  She has that perfect mix of "I'm not falling for that" and a gental compation.  I love to listen to her fears and dreams. I love her openess.   I wonder sometimes what made her choose our family.  With four brothers and a mom like me.  I'm so thankful she did.  She fills my heat with such joy and wonder and she has her Daddy wrapped around her little finger.  It's the sweetest thing!