Tuesday surgery.

The last few days have been good days. Tonight I am vividly reminded that no matter how good the days are little boys don't belong in hospitals. They belong at home simply being little boys.  The doctors told us that they will operate on Tuesday. We really feel like we are at the best place we can be. Dr. Fish man is the best there is. Originaly it sounded like they would do surgery on his tummy and on his thoracic duct. They feel like his thoracic duct is sluggish and that is what is causing the problems. They had a special meeting where 25 plus doctors get together and talk about special cases. Usually just three or four a week. Garretts condition is unlike anything they have seen here, it just doesn't present itself like this. We are blessed to be someplace where they have the knowledge they do to handle it. After talking it over they are just going to operate on his tummy and pray it will all be okay. He is so smal that his views are also small, even if the first surgery just buys time. They will feed him a full cream diet the night before do it increases the chyle in his system and hopefully makes the leak easier to see. Also on a bright note after two weeks they let him eat!!!!!!! To say he was excited was an understatement! We fed him some macaroni, toast, and a graham cracker:) he loved it!

My family sent a box today that had everything I could think to put in a box to keep s two year old entertained. The best thing it had was all the love, thoughts, and just feeling of home wrapped tight inside. How blessed I sm to have the support system I do. I'm pretty homesick right now. I'd give anything to see the green pastures outside my window when I wake up. To shell the barn while I get a bucket of grain and yell to the horses to come on do we could get saddled up. I miss the mountains, I miss the ditches, the smells, the taste of the air, the people, everything, I just miss home, I miss my family.

Tonight is jacies wedding and little Maggie is in Idaho with the girls. I miss my baby and can't wait to take Garrett out of here. To see the two of them play! No more chords or beeps, no more needles or blood pressures. Just trikes and swing sets. Rolly pollies and grasshoppers. Kittens and chickens. Day in and day out plain boring life. I'm ready I yearn for it.  I pray that somehow our pleas to heaven will be heard, that our little family can be together, happy, healthy and whole!

Well a lot has happened and a lot hasn't happened:) on Saturday night we flew on a medic flight to Boston Children's. They have more technology and they are the best in the nation for genetic abnormalities. We ran a lymphangiogram hoping to find the source of the leak. It was a long four hour test. I think both john and I were confident they would find a leak. They didn't. What we do know is Garrett has done abnormalities on the left side of his lymphatic system. They also think his thoracic duct may not be working like it should causing backup into his system. Dr Fichman came in yesterday to talk to us, he feels like doing a surgery on his intestines and his thoracic duct would be probably the best approach. I don't think he feels like this will get better on its own. Right now there is about 1000 ml of output a day. They have a meeting every Wednesday where a whole team of doctors will review his case and make some decisions.

Garrett got to go to the playroom he loved it! He is also on a clear liquid diet so he is a Popsicle fanatic. After several days of nothing he thinks he is in heaven.

When they had him in for his last test they put in a new pic line that is a double tubes one so they were able to take out his other iv's. That has been really nice. He hated the saline going in and acted like it really hurt him. They haven't poked him since we got here. It is emotionally better on everyone.

Maggie is in Utah, she acts a little ticked at all this. I'm so grateful for my family al the help with mags and all the prayers. Through all this we find we are truly blessed.

My Maggie my love

Maggie ann, I'm getting ready to get on a plane and fly to Boston with Garrett. I am more than a little scared there are a lot of unknowns but hopefully answers waiting in Boston. I want you to know I love you more than anything in this world. I have raised you to be strong, never lose that. You can conquer the world. You come from a line of strong women, look to them for direction, for support, for strength. Always stand tall, stand true and know that if anything I've ever done you and Garrett are my greatest accomplishments. Being a mother to you has been the greatest joy of my life. Letting you go to Utah was one of the hardest things I've done. I knew how loved you would be but the thought of you clear across the country from me is almost more than I could stand. I love knowing you are with me day in and day out. I will always be with you, always. Hold your head high my little one, choose the right, and wise, and be kind. Always know how loved and wanted you are.

I love you,

Mom

24th

The 24thhas always been my most favorite holiday. It's the one day a year when everyone slowed down and enjoyed the sweet pleasures of living. This will be one 24th I will always remember. We sent Maggie home to Utah with Emily yesterday. To say it was hard is an understatement. I can't wait to just be mommy again. To find joy in the journey of kissing owies and finding monsters. Ready to be done with machines, monitors, needles, and tears you can't fix.
My love for john continues to grow, I continue to be grateful that he is my forever. He has worked tirelessly to get us into Boston. How grateful I am that he's by my side through all this. Right now we are waiting on a bed opening up. John has been researching our doctor, he is as good as there is so hopefully we will find some answers.

Garrett is getting so he hides under the blankets when the nurses come in. He wants nothing to do with any of them. The nurses here have been amazing. It makes me glad Birdy is a nurse, it means the world to have someone who cares on your side.

Right now they have him on octeotride which is a growth hormone inhibitor so Garrett if your short someday we are sorry. He is on tpn and lips which means all his food is Iv. They have him on a strong antibiotic and nexium. There are tubes everywhere. He has you kiss his little hand with the Iv better several times a day. We have had some hard days, really hard days. Today is a good day.

Right now it's just praying and waiting. The flow has slowed down. He is fasting 100% and that has been hard. He has been pretty angry he can't nurse. It was his one comfort.

Through all of this we feel so blessed for all we have. All our family fasted and prayed for him yesterday. Emily has been here all week. How blessed we are for family. When it comes down to it they are everything.

4:00 am labs

Your drain is finally working and we are waking up with dry sheets! I feel like we can measure your output a lot better. They have taken off about 450 cc in the last four hours. They are giving you more albium to replace what they are taking off in the drain. This is also when the run you roseferen, I doubt u spelled that right. You blood pressure is 96/39 so a little better. You are wide awake right now  and clapping your hands. It's it a pretty wonderful feeling to see you alert and happy. I'm only letting you nurse off the left side, you are pretty ticked about that. You are urinating better such is awesome because they won't have to give you lasix. You have a lot of itching on the backside of your diaper. We put cream on it, you had a wonderful time putting cream on everything:) I want to watch that tomorrow, it is pretty red tonight.

Hard days

Well my little man I'm lying next to you in a place I prayed I would never have to share with you again. The days are starting to muddle together. We have been here just under a week. The days have been filled with a thousand worries. Hopefully we are starting to see some progress. Right now you have three different drips going. They are working to shut down your intestines with hope this will seal off the leak. So many tangled Iv lines. You have a monitor on your tie and they take your blood pressure every hour. Our nights are interrupted every hour as they come and go checking your stats, temp. And checking ivs. At four am they draw blood, yesterday we put in a picc line so now you don't have to be pricked so often. It was one of the hardest things I have ever done watching your poor helpless little body hurt as much as it has. You would cry for your daddy and hold me as tight as you could. Several times they had to prick you two or even three times to get a vein. You were such a trusting little fellow when you came in and now you are leary of most of the nurses. Yesterday was a hard day, a scary day. You were so white but today you look and act better. There are so many unknowns but we are praying my little man. I love you, more than life itself I love you. You are so strong and still the light of my life. 

They are waiting to give lasix until your blood pressure goes up. It is only 90/35 right now. To low. I pray you have a good night. I love you little Garrett. 

Life in general

Oh how time seems to fly, I don't sit down to write on this near enough.  It seems like there are always ads to do or babies to tend to:)  My babies are growing so fast I know that making this a priority is more important than many of the things on my to do list.

Christmas was a haze with the sale and all that went on, it seems like it was hear and then it was gone.  My mom and dad came down for the sale, it was so good to see them and so hard to let them go back home.  Each day I come more and more to the realization of what a blessing each day is.  I hope that I cherish them a little more, it seems like all to often I let things that really don't matter take precedence over the things that really do.

Dad has had quite a bit of trouble with his heart.  They just put a pacemaker in about a month and a half ago.  He has started to give away many of his "earthly acquisitions" and in a way it breaks my heart to know he is thinking of the days when he won't be here.  For Christmas he gave us all a Navajo rug.  Each genuine rug has a flaw in it that the old women would leave to let any evil spirits out.  We used to spend hours on the floor in his office looking for the flaw, they were one of his most cherished possessions in this world.  Now as his children they will be one of ours.  It makes me cry quite easily knowing that someday I won't have him.  How lucky I have been to have the great legacy that I do.  I often contemplate that my children won't grow up with the desert, Asay Creek, or the barn meadows that I grew up roaming and loving.  I did have an enchanted childhood, with parents that I knew loved me.  Dad took us everywhere.  My memories are filled with long days in the saddle, bucket rides in the tractor and water sceeters in the barn ditch.  I would give about anything to let my children have those memories.

We have been down to Poteau quite a bit, I know it probably won't happen but someday I would love to buy it just so my children can have a piece of land to grow roots down into, a place to love where serenity can be found in the day to day chores of life.

Maggie is growing each day, she is her own little spirit that has more spunk and will power than most adults.  Her middle name should have been Gilbert, she reminds me so much of him.  She tells me her skin get's pinkley when she has been in the tub.  All she wanted for Christmas was a swing set and a yoyo, the yoyo came thanks to Peppa Pig which she LOVES.  She would very much enjoy if she could watch toons all day everyday which I do try to limit how much time she gets in front of the TV.  She LOVES her cats and talks to them like they are her little babies.  When she gets a bottle she refuses to drink it and unless it's "all the way to the top."  She would love to mother Garrett all day everyday and loves to play with her babies.  Lately she has started to play pretend on most everything.  Her "friends" consist of the shaving cream bottles (one night after John had got done shaving she wanted one of them in the tub, she informed me the leftover shaving cream was a booger) the baby wash and the soap dispensers.  Sometimes they go to bed with us, multiples of them, but for real:)  She loves honey bears which I have tried to eliminate in the last little while just so they don't leak everywhere.

Garrett is my kind soul who loves life and smiles at everything and everyone.  He is CRAZY lately in the fact he has no fear of heights and is on everything and falls off of everything.  I cannot keep him down from anything, of there is a way to climb it he does.  He is all boy, he growls at you, and is pretty easy to get a giggle.  I would love to get him weaned and yet it seems like his happy thoughts are nursing so we still nurse away.  He bites like the dickens and we have went the rounds a few times over it all.  He has suddenly grown a fettish for pulling Maggie's hair.  Last night he pulled it so hard he pulled her backwards in her chair she was sitting in.  It breaks his heart when you get mad at him and he has the saddest little cry in the world.  He has a little sweet tooth and would prefer you feed him candy, who wouldn't:)

John, my sweetheart, best friend, and love is as always crazy busy with trying to conquer the world.  He is never content to be idle and slow down and always takes on a bigger challenge somewhere, hence Poteau.  He really is my better half, we have had a heck of a ride, I don't know where I would be without him.  I love him with all my heart and soul.  We just had four years, there has been a lot of water under the bridge since then, a lot!!  He runs his head off for us and always has a smile, I marvel at his patience and his ability to stay calm in the eye of the storm.

My little Birdy is going to have a baby, I know how crazy is that!!!  I am so excited, how did she grow up so fast, where did childhood take us all and how is life so fleeting?  She has been terribly sick.  Tawnya and Rodney are coming home, it will be good for them to be back with dad, I will be glad to have them there just for the peace of mind.  Emily I pray with all my heart finds the happiness she deserves.  Jess is doing awesome on her mission, I need to write her.  I miss my Hells like crazy, I would give anything to have all my sisters live right next door.  Julie amazes me to stay on top of things, she is selling vitamins and gives a sales pitch to all of us lol:)  Steven got a new mini van and glasses.  Lou just turned the big 30, how wild.  Each and everyday I marvel at my parents and how they did it all.  I am so blessed.  I love this crazy day to day thing called life.