blog book

I made my blog in to book for our family.  I ordered it on the 4th, it was shipped on the 19th and has yet to arrive.  I looked at the tracking and it was shipped to the wrong place!!! I'll see what I can do to get it on Monday. I figured since I will most likely have this post as the first  or second post of our next family blog book I should start with a brief overview of life.

Our family is healthy and happy! Our kids are ages 10,8 (for 9 more days), 6 (for 7 more days), 5(barely), 2 and 13 mths. 

Caleb is a total pre-teen.  For example, the other day we were all walking to the park when he started hanging back and kicking at a fire ant mound.  I called to him "Be careful. They WILL bite you."  He turned and looked at me with a LOOK that said "are you seriously telling me this".  We have a deal that I will try to remember that he's getting older and doesn't need me reminding him of every little thing and he will work on being respectful when he feels babied.  He is doing great in school and really stepping it up at home as we've implemented a way for him to earn money. He has a special bond with Lydia and sometimes she'll fall asleep in his arms.

Anthony is such a great kid.  He is a rule follower and tries very hard to please us all the time.  His teacher says he's a joy to have in class and he enjoys being one she sets up as an example to the other kids. I have also noticed his tenderness with David.  He is great at getting David to eat one or two bites when nothing I've tried has motivated him.  He has been begging for his own room since he loves keeping his thing in certain spots. Both my big boys have the best senses of humor and I LOVE hearing them busting up laughing together at some silly play on words they created.

Jentrey is blossoming.  I have really enjoyed her added interest in sewing and cooking.   She loves to help make dinner and make our house "pretty." She has naturally just taken to it. I love watching her eyes as she intensely stirs the contents of her mixing bowl.  I just re-did her bedroom. She is now rooming with Lydia.  She adores her little sister.  The only complaint I've heard is her wishing she was older.  Jentrey is quite athletic and  has picked up on things her big brothers have just barley mastered. She is great in school and loves to read.

Luke is growing too fast! He just turned 5!!!! I can't believe it.  He is strong willed and sweet.  That combo makes for some fun times at home.  He will be Mr. independent all day and I can hardly slow him down enough to snag a hug, a day later he will want to cuddle and play all day.  He is great at not giving into David. lol!  That makes things interesting too, but I enjoy David having someone who is real with him and not afraid to hurt his feelings.  David and Luke are very close as David has just started being able to play Lego guys, light-sabers, and sorta wrestle! Luke is just starting to read and I am determined to make the time to practice more with him. His imagination is awesome and I am forever being surprised by invaders or shot with ray guns! Luke is really in to Legos.  His birthday is just one week before Christmas and we felt ridiculous giving him pack after pack of Legos but that's all the kid wanted!!!

David, where to begin.  He is doing well.  We had some events in October and November that have left us feeling nervous and blessed.  David is taking speech therapy twice a month.  He doen't seem to be behind in anything other than understanding directions.  For sooo long we never told him to do anything!  They are watching his clarity closely and making sure he stays on the right path as children who never eat orally sometimes lack muscle tone necessary to speak clearly. We have a pet rabbit and David is known to go over to it and say " I pet my bunny!" One of the sweetest things he does is walk over to me and stroke my hair and say "My Mommy." It melts me every time. David also is doing feeding therapy twice a week.  David won't eat purees. They spread in his mouth and make him gag and throw up.  Right now we are using a dry spoon to help him learn to close his lips and move food into his mouth.  He likes to bite food off,  We are also helping to strengthen the right side of his mouth. He chews everything on his left side.  He will eat about 5-10 peas sized bites a meal.  He will drink coconut milk and water only.  We are hoping to get him to drink things with significant calories eventually.  David has dumping syndrome so he cannot eat or drink things that are super sugary or his blood sugar will drop dangerously low. Choosing foods he'll like is always tricky. David is also doing physical therapy once a week.  We are working on stretching out his chest and helping him learn to breath deeply.  He has lots of scar tissue that makes it hard. He just got some specially made insoles that help his walk better.  We are hoping he'll be able to build more muscle tone in his hips now that his instep is more aligned.  Hopefully he'll learn to run and jump this year!  David's stamina is limited and getting lower and lower.  He'll be ready for his Fontan this summer.  I know this seems like alot for an up-date but I really want to remember where we started from this year!  David will trot around for a few min and then go lay on his tummy and play Lego guys quietly for a while till he recovers from his "running."  The therapists always look worried when he walks into their rooms.  "Ok David, lets sit down and take a rest, are you tired?"  He breathes pretty heavily.  David loves stickers, bubbles, and Backyardagains. His favorite episode is the 1st one.  It's about pirates and has really helped him keep his eye patch on!  We patch 2-6 hrs a day. They think he sees pretty well. The lower right bit of his preifeal vision will be cloudy forever but we'll figure out how much the coria transplant has effected his main vision is a few years when the graft is fully healed. One of David's favorite things to do is play in my hair.  He will graba Leggo guy and weave it through my hair.  It saved us when we were inthe hospital but I'm sure the doctors had a hard time taking my seriously with a toddler fliging my hair in my eyes every few seconds! : ) As for this summer, we will see if we try the oblation procedure again or just move ahead to the open heart surgery. at this point we are trying not to think too much about it.

Lydia is busy.  She is into everything! She walked early and continues to amaze us with her skills.  She has learned she can grab toys from David and take off running. He can't catch her just yet, (maybe his new insoles will help.)  She sleeps through the night but wakes at 6 to nurse..still night to me! She is learning to talk and it seems way too soon.  David was a baby for so long so Lydia's growth seem super speed to me! Whenever I ask a question to the kids, David yells "Me!" The past few days Liddy has bee yelling "me!" also.  I sing songs to David and he fills in the words where I pause.  Lately Lydia has joined in..not with words but with sound! Twinkle twinkle little "uuuuuhhhhh," how I wonder what you..."uuuuhhh"  It's so funny.  She throws fits by flinging herself backwards despite what's behind her.  I've had to dive for her a few times!  Over all she is very happy and independent.  This week she's been teething and has only wanted to be in my arms but that is not the norm. She loves giving kisses and playing clapping games.

Andy and I are holding up!  Lydia and David have been getting to bed at a decent time lately (that last hospital stay did us in for a while!) Andy is working alot.  In his free time he builds me awesome things for the house (desk and window seats), fixes things (too many to name! ), plays with the kids, helps with homework, makes dinner, lets me get out, and sometimes manages to go for a run.  He works himself ragged for us and I'm blessed to call him mine.  I keep busy with appointments while trying to squeeze in laundry, cooking and house work.  This year will be easier as Lydia and David are getting older.  In fact I look back at the past two year and wonder how we managed this well.  We have been held up by prayers I'm sure! I think I'll start feeling more on top of things just in time for David's surgery and my illusion of control to come crashing down again.  I'm learning to roll with the punches and have joy in the now!

Life is good.  We have lots of joys and moments of terror.  David's now hooked up to a feeding pump all night.  We have spent many nights up every little bit with his pump clogging.  We have woken up when his pump has not alarmed only to see that it is running but no food is pumping.  David blood sugar has been dangerously low.  We have woken to see his tube has come unlocked from his g-button and food is puddled on the floor and he is very very low.  It makes it hard to sleep restfully but we are getting the hang of these new adventures.  I wake 3-4 times a night to re check every thing.  When David learns to eat we won't have to do this anymore but he still has a very long way to go..and yet he has come sooooo far.  I can't hardly think of the baby that would wretch uncontrollably with the slightest touch on his cheek.  I now watch that same kid laughing with his big brothers and spinning with his sister.  I see my children learning tenderness an acceptance on a whole new level. I've watched them become moved with compassion when they hear of others who are sick or have loved ones who are struggling, and rejoice sincerely when they feel better. The joys my children feel with David are so deep and I feel joy all the deeper witnessing it.

I can think of a whole slew of goals and ideas for the coming year and hope to be able to pull off some of them.  My word for the year is HOPE.  I hope.  I have great hope.  It was so touching to have a wonderful heart mom give me a decorative tile with the word hope on it.  I felt my word or the year reconfirmed.  Hope!

I hope to get on top of things, I hope to not neglect anyone, I hope to push hard enough but cut enough slack, I hope to teach my children the important things, I hope to be an example through the hard times, I hope to be perceptive to their needs, I hope to take good enough care of myself that I can pull all of this off, I hope David stays healthy , I hope he does fantastic through his surgery, I hope we don't have complications and I hope if we do they are few and easily fixed.  But above all I hope my best is good enough and that I won't ever give up.  I hope to always remember my promises to have faith when I'm tired or scared and lean on God. 

 

Andy bought me a fire pit for Christmas. We made just the memories I had in mind.  Even David roasted marshmallows! Liddy-bug preferred to eat her cold marshmallows off her stick. Afterwards we went inside and drank cinnamon milk.

Andy and I spent a little time out by the fire and called the kids out when we saw the space station making it's round.  What a great night!

It's about time

For some reason, when I unplugged my old computer and started using this lap-top, I couldn't get my blog to let me up-date.  I tried many weeks in a row and finally gave up.  I figured that when Andy finished building my new desk and I plugged my old computer in I would finally be able to blog.

The desk isn't done but after the events of the last 2 weeks I thought I'd try one more time to blog on this computer.

Quick up-date...Lydia turned one, 2 days ago...she has been walking for two months already, the kids are loving school, the big boys are doing baseball, Andy is coaching it,  Halloween was good and bad, with a great trunk or treat the weekend before David's oblation procedure, and actual Halloween night spent with David in the hospital (after a terrifying ER visit due to SVT) and the kids trick-or-treating with Me-ma and Paw-pa.

The time off from blogging has been good for me.  I've had the chance to stop reflecting so much and start re-grouping.  I realized a few things about my coping and have tried my best to change the negative. I want to share one today.

When I found out about David's condition..I mean really found out, I was heart broken.  I had dozens of emotions but I mentally felt I understood.  I didn't feel the why me..I felt shocked, but I knew what I believed.  That being that we are here on earth sent from living with our Father in Heaven to learn to be more like Him, to be tried and by so doing to gain experience and understanding that we couldn't develop in our wonderful heavenly home.  I knew God wasn't punishing me, but teaching
me.  Some lessons are so very painful.  Because of my core belief I didn't feel angry with God.

Time passed, we went through surgeries and close calls, and agony as we watch David struggle.  We finally came home with him. Later,  David was accepted in a medical program that would help with the medical bills he would acquire in the future.  We still had 7 surgeries and 3 months of ICU to pay on but any future bills would be mostly covered. Such a HUGE blessing! One of the parts of this medical program that I struggled with was the required use of a home health nurse.  I had a nurse come 2x a month and as sweet as she was, I hated that she had to come.  I hated that I had to report on his doctors visits, that she had to check his vitals and bug him.  We also started David with ECI.  He was 7 months old before he could tolerate tummy time and was very delayed.  I hated the way David would clam up when the ladies in scrubs would walk into our home.  "Does he respond?" "Can he smile?"  they asked.  I looked over to see my sweet normally observant and interactive son, staring off unresponsive.  "Yes he smiles, he just doesn't like new people."  He would get all stiff and edgy. All the appointments were emotionally exhausting. I hated having to tell when he last pooped and what color it was! I hated all the questions and observations and intrusions!

One day I was fuming (in my mind) as I did the dishes, mad about some supplies that weren't in when we needed them and some pharmacist who had filled the wrong prescription again. And why did the pediatrician want to see him when we just got back from Pulmonology and they gave us the meds we needed and David didn't need to be exposed to all the junk at the pediatricians office when he was sick anyway!  I was just so irritated all the time at everyone having to do with David's medical care.

That's when I went to my room and started praying and crying.  I told Heavenly Father how angry I was!  Why did they always want to poke him and mess with him, and look him over like a specimen. As I finally cleared my mind and humbled my heart (a little), Heavenly Father helped me understand that I was grieving and taking it out on the people who were only trying to help me take care of David.  Despite what I thought, they only want what's best for him, and despite my innate desire to protect him from any unnecessary pain and trauma..they weren't TRYING to traumatize him..and that makes all the difference.
 I have worked really hard on forgiving the nurse who threw away my tediously pumped breast milk, the nurse who sliced David's belly trying to remove a stitch, the freak-out charge nurse who stormed in the room in the middle of the night and tried to put David on O2 because of a small (normal) coughing spell.  I try to be understanding of the care partner who was given orders to wake up my sleeping child at 4 am, strip him down and weigh him, and of the nurse who lost the labs that took 20 min to get and wants to re-draw them.  Understanding, not hostile, but assertive and kind.  I'm still working on it..and this recent round of hospital stays has given me more to work on, but I don't feel so angry any more.  This is David's life and I can help him and support him or I can make it harder on him by stressing and overreacting.  I must protect him from unnecessary intervention, but also from becoming angry like I was.  I'm sure he'll have his struggle with it, but maybe I'll have figured out how to help him through and been an example of understanding on both sides.

Lydia's 6 months old!!!

My sweet Liddy-bug turned 6 months old!  Lydia is the most wonderful little baby.  She is good natured, observant and pretty fearless.  She loves to be independent but still makes time to snuggle.  She finds her siblings hilarious and lights up with glee when her daddy gets home.  Lydia is my earliest scooter, having started at 5 month old!  She now gets all over the room.  Today when I took her outside and put her on a blanket she scooted right into the grass and rubbed her hands all around in it.  She doesn't mind when the kids are loud or even when they bounce her on the trampoline.  She loves kicking around in water and grabbing at anything I'm trying to keep from her.  She recently started sleeping through the night..most nights.

I don't know how much she weighs but she's nice and fluffy! I can't help but squeeze her little cheeks! Her hair has the most precious little curls.  She is the perfect end to my baby having days and I'm enjoying every minute of her.

David is TWO!

Oh David! You are Two! You made it!!! No matter what is to come I've had you for two whole years! I want to weep with gratitude!

David, as I think back on what we've been through together I am in awe of the amazing plan of our Heavenly Father.  Who would have thought such a trial filled time could be so full of blessings.

I remember when I first saw your face.  They layed you on my stomach.  I could see the top of your head and was touching your face.  As I turned my face towards Andy's to marvel with him at your birth I said something.  I don't remember what it was but at the sound of my voice, as if you had control, you turned your face and looked up at me.  Our eyes locked and I fell so deeply in love with you.  I promised you in my mind that I would help you through everything, that I would always be there for you and keep you safe. I knew you depended on me.

 They wheeled me over the breezeway to the childrens hospital.  I suited up in gloves and a big yellow apron. They wouldn't let me touch you with my skin.  You were there crying on this tiny plastic bed. I placed one hand on your head and one finger in your tiny hand, with the rest of my hand resting on you perfect scarless chest.  I talked softly to you.  You calmed immediately.  That night I watched you stop breathing.

 I remember your first smiles.  Andy and I would do anything we could to coax one out of you. They were food for our souls.  You wouldn't be awake enough to smile unless your pain meds were starting to wear off. It was a balance of getting you awake enough to interact and drugged enough to not be in pain.  The magic time only lasted a few minutes every few hours, but oh how you'd fight to stay awake when they gave you your next dose of pain medication.  Your little eyes would bat open and closed so many times before you'd finally lose to sleep.

I remember sitting in the milk pumping room.  Some crazy nurse thought it was a good idea to cover the walls with Anne G. baby pictures.  You know, all those fat healthy babies in ridiculous/adorable costumes.  There I would sit, cold and tired, trying to pump you milk and trying not to think about the fact you could die at any moment...and trying not to look at those taunting pictures.

I remember your first little cries. Not from birth, but after they took the breathing tube from your throat. How I longed to hear your cries.  With it in you would cry with no sound.  Unless a nurse or I were standing and looking at you we wouldn't know if you were crying or for how long.  Each time they'd try to extubate you it was heaven hearing your tiny hoarse cries.  One time your dad and I were visiting you, you had been sleeping soundly so we sat behind your little bed talking.  After a few minutes we hear a faint little sound. We stopped at looked at each other, smiling.   We heard it again, almost like a soft kittens cry. We came right to your bed side to comfort you, with tears in our eyes.

I remember the first time I really held you.  Every time I think about it I can't stop myself from crying.  28 of the longest most heart wrenching days of my life. You'd had 4 open heart surgeries and 2 resuscitations. It took over 15 min just to move all your wires and tubes to a rolling IV pole.  The moment they set you in my arms I felt a flood of emotions.  I had waited and waited, promising God I would be patient about holding you if you would only be allowed to live..I'd wait as long as I needed to.  They kept trying to get you stable enough to hold but your blood pressure would drop or you'd need to be re-intubated, you just didn't tolerate laying on your side.  So many times thinking..maybe soon..but no..and it was ok.  But when they surprised me and let me hold you, I was in heaven.  It was more than I hoped for.  3 hours of studying the angles of your face, feeling the weight of you in my arms, smelling your head, singing you hushed lullabies, and thanking God for that precious moment.  My arms didn't ache anymore.

I remember walking outside with you for the first time.  You were 3 months old!  We squinted our eyes against the sun.   You had done it! You'd felt the warmth of the sun, the breeze in your hair, you'd heard the sounds outside of the hospital, and we were going home!

Going home!  What a terrifying wonderful feeling!  I carried you into the house.. The kids had a big welcome home sign for you and a big chocolate cake!  We layed you on the green blanket on my bed and marveled at you.  All the kids gathered around.  The spirit in our home was pure and perfect.  I had looked at our green comforter for months, imaging you laying there in the middle of our bed instead of in that cold, sterile ICU room. You'd take a turn for the worst and I'd push the thought from my mind and regret having hoped so vividly. Now there you were. Andy laying by you, Luke by him, and you're smiling. It's a mental picture I'll never forget.

A few days later you started kicking your feet.  You couldn't do it for long and would sleep alot after but there you were with no cuffs or wires hanging off of you and you were loving the freedom.

I worried when you came home that you would be over stimulated by the noises of your siblings, but you seemed to thrive in it.  You were not a fussy baby in the true sense of the word.  You were what I like to call "rapid cycle."  You slept a lot!  You had so little oxygen you were always a dusky grey color.   You would wake up happy and playful but within an hour or so you were tired and fussy.  You'd fuss for an hour then sleep for an hour, then it would start over.  I'd sit in the rocking chair with you plugged up to your feeding pump and I'd rock you..for hours.  Days seemed like they would slip by and besides getting meds and pumping I spent weeks in my room rocking you.  The kids would gather around and I would read to them and help them with their school but you hardly left my arms.

When you first came home you couldn't have anything near your face, without lots of work warming you up.  You couldn't be held chest to chest. Even if I held you baby doll style and your cheek would brush against my chest you would be sent into a spell of uncontrollable retching.  You'd turn from dusky grey to down right blue in seconds.  For those first months home I worked with you, creeping my finger from your forehead down to your cheek then finally to your lips and ever so gently I'd rub your gums.  You were 10 months when you'd finally sleep comfortably chest to chest on me when I sat.  You were 20 months when you first let me brush your teeth with out oral aversion issues. Those milestone are such sweet memories.

I remember your trusting eyes as you got to taste things.  You'd look at the food with a unsure and somewhat disgusted look.  You'd look at my encouraging face and let me dot it on you lips.  Even more recently you gave me that same unsure look as I helped you take steps or I helped you cope with letting the nurses do another echo or another EKG.  Those big blue eyes speak to my heart.  You always give what you can.  You are my hero.

I remember your first walks and park trips, when you first were able to sit, and your amazingly beautiful, proud face as you rounded the island in our kichen for the first time walking!  It brought tears to my eyes.  Oh the things we take for granted!















 I remember your fist big belly laugh.  Caleb was playing with you in your crib.  I could hear you giggling and was coming closer.  Then I  heard you just crack up laughing.  Again and again you laughed as Caleb did some sort of silly sound and motion.  Then out of my room ran Caleb as fast as he could. He had the biggest smile on his face and tears were rolling down his cheeks.  "Mom did you hear it!! I made David laugh so hard!"  Tears continued, now for both of us, tears of joy.

This is not of that day but Caleb kept finding great joy making you happy.

This is you in all your adorableness. Imagine having to turn this sweetie over to have  his heart stopped and fixed.

 I remember after you next open heart surgery..the one at 6 months old (Glenn).  The kids came to see you.  You were all swollen and burnt up from the chemicals they used to wash your neck and hadn't rinced well enough.  You looked miserable but were smiling at them.  Oh your fighter spirit!

Such a trooper!

day four

EEG number 3

You eventually learned to like sucking on fabric with the front part of your mouth.

One year old!

You didn't care for grass at first but after many exposures you learned to handle it.

Your eye surgery was 3 weeks before Lydia was due!

I remember then you woke up from your nap and layed on my bent leg, smiling happily at the boys....then your face fell to a blank stare as you started having a seizure.  I held you as you jerked faster and faster.  My nine month old little baby! We rode to the hospital in an ambulance that broke down on the side of the road.  Good thing you were recovering ok by then or I would've been hitch-hiking you to the hospital.

I remember you at the hospital with RSV.  You had just started taking real steps the week or two before.  After a few days of being in the hospital you were feeling some better..still on oxygen but wanting to walk. You did your sign for walk and pointed out of the bed.  There you were trying to walk with all your wires!

Then there was today.  You were coughing, having yet another cold.  You were gagging.  I asked from the other room, if you were ok. UH! is what I heard. "Ok"I thought  5 min later I started thinking "where is David.  I went to the boys room where all the kids but you were laughing and playing. David! I called.  David!!!  My heart started beating faster as I scanned the living and dining rooms.  David!!!!!  I saw you over behind the couch laying on your back on the wood floor. I looked at your coloring as I ran to you.  I shook you! "David!!!!!" I said hearing the hint of terror in my voice. Your eyes opened stunned then sleepy. "UH!" you say. I sighed a huge sigh of relief,  hugged you slowly, swallowing the lump in my throat.  Then I placed you lovingly in my bed, kissed you and walked away thanking God for another day with you!

David I want you to know.  You are amazing.  You fight and try and keep going.  You look scared, tired, unsure and even in pain sometimes but you don't let it get you down.  You are full of life and joy.  You love to laugh and play and make us laugh! You have deep reserves of patience and a look of wisdom in your eyes.  Sure you throw your food on the floor and try to whack Liddy in the head sometimes, but when I hold you I feel stronger, when I worry and fret and try to protect you, you always surprise me with your ability to take what comes and re-group from tramatic episodes.   You teach me by your example to keep going and keep loving each day I'm blessed with.

Happy second birthday my love!