4/16/12

Life

We had a great Easter!  Pictures were last on the list so I only took a quick snap shot!


 Lydia is 5 months old and is trying her best to scoot! I can place things 6-8 inches out of her furthest reach and sure enough, if you give her a minute or two she'll get to it!

 This picture was too funny to pass up. Caleb was awesome and gave David a breathing treatment while I cooked dinner. He moust have been pretty worn out because when I came back to turn off the machine I saw this.....
Caleb must have fallen asleep and drpped the mask but David being the smartie pants he is put it back on and held it there imself!

 David is officially walking.  This was his first time trying to wear shoes and walk!


My PANTRY!
We have a pretty big home.  Why on earth would someone build a home this large with this many rooms and only have a tiny closet sized pantry!  With our family of 8 we have been over flowing our pantry for some time now.  The only solution we could find was to close in the hall to our laundry room. (Tiny closet laundry room, but that's another story!)

 Here is the hall with the wood floors pulled up.  Andy had to move the electrical outlet over.


 Yeah! He put up dry wall, textured, and painted it!
(this side will be a built-in desk area)

On the other side he put in shelving




While he was in Utah I painted it and loaded it up!
YEAH!
Happy birthday to me!!!

Lydia had her first pony tails last week!  SOOOOOO adorable!

4/1/12

Family Up-date

I feel like it's been forever since I wrote from my heart.  I feel like I've been in survival mode for the past 2 years and am just peeking out.  I'm finding a lot to think about! Besides noticing that all my drawers, cabinets, and walls need a good cleaning out and scrub down, I am finding a resilient house full of blessings!

Andy and I celebrated out 11 year wedding anniversary last month and I can say with all my heart that I love him more now that I could even comprehend on the day we married.  That's saying alot since I am a hopeless romantic at heart!  These past few years have allowed us to go to a whole deeper level of understanding each other.  We have been very open about our fears, struggles, joys, grief and dreams for the future.  How did I find my perfect match?   Andy is a gift to my life.  He has made this adventure bearable.  He has kept me sain by understanding my tears, weather they are from joy or heartache.  He never expects a clean home, or food on the table, and tells me I'm wonderful basically for surviving our chaotic life! He has picked up soo much slack (laundry, shopping) and listens as I drag up old painful memories and process through them.  He works hard at work everyday then comes home to hold babies and help make dinner! What a man!

Caleb- He has taken to public school quite well, as he loves making friends.  The schoolwork on the other hand, is a thorn in his side and he has a hard time keeping his head out of the clouds.  That said, his teacher has said he's a  "delight to have in class."  Caleb is very charismatic and loves to make people laugh. His favorite things to do on a rainy day are to make comics and pull pranks.  He's very creative and I love seeing all the detail in his drawings. Caleb is a natural when it comes to babies.  He LOVES them! Even with all the "will you grab David", "Please get Luke some milk", "Oh, quick grab Liddy-bug before she rolls off the couch!", he still asks to hold Lydia and David for fun.  I'll find him making David laugh by spinning him around, having David repeat silly words,  or kissing Lydia's chubby cheeks. He also enjoys, riding his bicycle, and most the time enjoys cub scouts. He has recently started coming to hang out with me and his dad more. It's been an experience to see him becoming a young man.  

Anthony-  He is doing great with public school. Grade-wise he's above average but would rather be home schooled if he had the choice.  He's very self motivated and task oriented.  Anthony has recently started to like drawing and would like to take guitar lessons. Since starting public school I find him coming to talk with me more. He still climbs into my lap if it happens to not be full of his siblings. I love that he wants to be with me and enjoy hearing his detailed descriptions of things at school, even if it takes a 15 min to get through any story!  Anthony has recently started cub scout and loves it! He is so helpful and responsible. I'm one blessed mom to have him.

Jentrey- She is a girl! I know it's obvious but with her in school I'm seeing extra clues.  For example there are girls in school who like her and some that sometimes like her and then there are mean girls. She has had more "friend observations" than all my boys put together.  No wonder girls are high drama! Jentrey loves to dance and play pretend.  She has recently started fixing her own hair.  He skills aren't ready for school but it shouldn't be too long till they are. She loves to help cook dinner and serve it. I was recently surprised about how much David's medical condition has effected her. I have talked really openly with the big boys about their feeling and fears but Jentrey (being 4 when this all started) was often in the back ground of the conversations.  A few weeks ago she asked me a question beginning with "IF David grows up." Then the other evening we were laying in bed together while I nursed Lydia and she proceeded to tell me about telling a friend at school about David and all the little girl did was shrug her shoulders. Jentrey expressed her sadness at that.  It was like she was searching for validation about David and of course the little kindergartner couldn't give it to her.  Then she talked about how it would be if David died, repeating 3 times "but he'd always be with us."  At least she'd picked that up from our previous conversations. 

Luke- He is fun. He's obsessed with Lego men.  He usually has one or two in his hands or pocket at all times.  He loves to pop them all apart and mix up all their body parts.  Being home without his older siblings has been good for him. He and David love to fight over toys and play ball together.  Luke is the only one of the kids that doesn't treat David with any special mildness.  David seems to enjoy tormenting Luke and will often get a sly grin as he takes Luke's guys or crawls on the book Luke's looking at. I've been working on discipline with Luke. Some of his self control has gone by the way side as our focus has been on the two younger kids.  We've been stepping up his discipline and this determined little boy has given us a run for our money! It's so hard to discipline such an adorable usually loving little guy..but we need him to stay pleasant to be around for the long term and I have to keep myself from taking it easy on him or laughing out loud at his hilarious yet naughty stunts.

David- His hospital stay has left him very timid where walking's concerned.  He has just over the past week taken off walking again. It has been bizzar to see him come around the corner and be walking slowly step by balanced step.  I would say he's at least half and half now! He looks very proud of himself and that look of joy and determination fills my eyes with tears.  He is just so beautiful.  He walks withhis little shoulders raised and when I see him and say "David your walking!!!" he'll just beam! As for eating orally,  some days I think we are breaking through and he'll eat a cracker and a little cheese in the morning, a few bites of pb&j for lunch and 10 beans from bowl of chili at dinner.  Then the next day he'll throw stuff on the floor or only lick his crackers all day.  He likes to do things in his own time and I try not to push him too much.  We do messy play with cooked noodles and pudding.  They say the more he feels food the more likely he will taste it and enjoy the textures. He is starting to get down right bossy and we are having to discipline him.  It's hard to tell him no and take things from him, but it's very necessary!

Lydia-She has no clue how much joy she brings me.  The look in to her eyes and get to dream of her future.  I can imagine her first birthday with out painful what ifs.  I get to watch her normal natural development and stand in awe as I have a better concept of all that can go wrong.  She is so happy and calm.  She sits and watches and smiles.  She laughs the most for David and David has recently started to enjoy her.  She will cry and he will call to me  "Lydia, Lydia!"  As if to tell me "Mom! Lydia needs you!"  Yesterday she was hungry and crying.  I was holding David and told him that Lydia needed milk and was hungry. I said "David you need to sit in the bouncer so I can give Liddy her milk. I sat him in the bouncer and picked up Lydia to nurse her.  He actually looked glad that I had made her stop crying.  Once I got Lydia all situated he asked for me to hold him too. "Up?"  I held them both and he played with her hands.  She adores him. Lydia also thinks she is old enough to start trying to scoot.  She can pivot and will often get over to the toys nearby. She weighs 18 lbs and she's not even 5 months just yet!  She is growing WAY too fast!

As for me, I am happy.  I am so blessed. Heavenly Father loves us so much and has shown us such tender mercies.  Life can be hard.  We have moments of melt downs and chaos, but I like this chaos better that what we've been through before.  Life is good.  I love my children and an thankful to be actively improving our relationships and to have more emotional energy to devote to them. I dread the next procedure for David.  It will be in September.  I wrestle with pros and cons of everything we do for David and have had to learn to trust in the Lord as I just can't control or fix everything.  I am learning so many lessons.  One big one is to focus on my family and my life and do the best I can, trusting that Heavenly Father will smooth over my shortcomings as I give my all. I feel so overwhelmingly blessed.

3/30/12

Daily Fun

 

Lydia thinks she's so big!

David likes to "get" Luke!

Luke likes to "get" David!
 

David if finally really walking around almost as much as crawling!!!

I LOVE David's face in this picture!

This one... not so much!
 
 
 
 
 

Two of Lydia's body gaurds!

David pulled the spagetti off the counter onto his face!
Thankfully, it wasn't hot.

David is in love with hats!!!

Caleb and Anthony are great at making Lydia laugh!

Me and my babies...2 of them anyway!
 
 
What a blessed life I have!

3/23/12

A picture is worth a thousand words.


Yeah! They love eachother!
 
My happy three that stay home with me all day! 

See she does have curls!
 
 

It's even endearing when they pick on eachother!..sometimes!
 

Spring break road trip and morning at Memaws!
 
 
 
 

My big boys, my helpers, my entertainers, my sweethearts!
Andy's project!   He's a keeper!
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3/2/12

HOME!

David made it through Wed night with out O2 so we were able to come home Thursday afternoon!!! David was soooo excited. He kept chanting "go go go!"  and shaking both his little hands in the air!  He feels so much better.  Last night was an adventure filled with 3 diaper changes, a nebulizer treatment , CPT, 2 x up nursing the baby and one suctioning session, but we are thrilled to not have nurses coming in every few minutes and alarms being set off each time he coughs or kicks off his pulse ox!  Poor Lydia has RSV now!  She was up alot coughing and trying to breath better.  It's going to be a long week end yet but I can't describe how wonderful it is to be together and at home!  Thank you so much for your prayers.  As you know respiratory illnesses are very hard on heart babies and David is recovering beautifully so far.

2/28/12

Up-date on David

After two decent days in the hospital, David had gone from needing 3 liters of O2 to only a quarter liter.  The next morning at 4 am they had to turn up his o2 to a half liter.  He stayed at a half liter all day the next day but as night approached his sats started dropping below 75.  The turned it up at 11 pm and then again around 5 am.  The nurses started to worry  when his sats kept being so low. When David woke up this morning he started coughing and his sats dropped to 66 even with 3 liters of o2 flowing into his nose!!! The night nurses scared us to death as they had started speculating about his heart being damaged by the coughing and not able to keep up.  They were talking about his next surgery as well as the possibility of him needing to go to the ICU.  The day nurse and charge nurse suctioned him a few times and called his pulmonologist.  He came as well as his cardiologist, pacemaker tec, floor cardiologist and floor nurse practitioner.  They ordered an x-ray and more treatments. 

The thought now is that the flem in his lungs is loosening and he's trying to cough it up.  With RSV the secretions are very sticky and thick.  As he works them up from his lungs they are blocking him from getting enough oxygen.  So his sats dropping so dangerously is sort of a good sign in a way.  It means his lungs are clearing...just not clear yet. 

Today got better as we ended the day on 1 liter with sats in the low 70s.  Definatly not as good as no o2 and sats of 79 (normal for him), but alot better than sats of 66 on 3 liters (dangerous!).

One thing I've heard about Heterotaxy kids is that they tend to take 2 steps forward one step back.  It's a roller coaster but at least his heart isn't damaged and his lungs are clearing.  We are praying his sats don't drop so low he ends up in the ICU as he gets through this virus.
Thank you a million for all the prayers, each and everyone!