Monthly Archives: April 2012

The sun

Again I sit here next to Eli and stare out over the beautiful landscape that surrounds our room. Flowers are over flowing, pictures of the kids and family on the sill, and the sun is beating in on us and I feel it. Warm and spectacular shining down on our miracle boy.God is letting me know today that he is everywhere around us with his beauty, love, and strength.

Eli, had a great night in his terms. His blood pressure stayed up and his pulse ox stayed low (we want this). His lactate level is between 4 and 5 which is good for E. HE IS PEEING!!!!! He is not stable enough to have surgery yet we need him to stay at these levels for 48 hours before he can handle open heart surgery. We have our favorite Doctors on with us again, love you Dr Crowley and Jason Christensen. They know our boy and know he causes trouble, but also know how to handle him. Dr Crowley said they are presenting Eli’s case to all cardio staff today to get them ready. Looks like we are switching surgeons to Dr Bove, so we don’t have to wait for Dr Ohye to get back from a conference.

Dr Crowley also told Ron and I to rest up the next two days as much as possible because it will get bad after the surgery. Just a warning to everyone of what is to come.

Here are some sweet pictures from this morning!

ImageImage

 

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One step forward two steps back.

Hello everyone, sorry it took so long to update today. The internet has been down all day.

Lets get to the Eli report. Eli is on a hamster wheel he can’t figure out how to get off of. He is trying so hard to do all the things he needs to do, but in doing this it is causing other issues with his little body. His fluid retention is really the “bad” thing right now. Eli is just swelling more with each passing hour. His body just can’t kick the fluid. In fact his blood pressure in back to being unstable and one of the things that makes him feel better is you guessed it “more fluid”. His lungs are filled with fluid as well as everything else and he isn’t peeing much.

Eli was scheduled for surgery tomorrow but because of his unstable nature we have had to postpone in attempts to get Elijah stable.  They have reset his surgery date for May 3rd, which we know seems so far away.

I am having a hard time figuring out what to say today. I feel like I am living on my knees. As I write this today tears are streaming down my face and I find myself in quite contemplation. What is next? What can I do? Please God hear my cry! Our view from Elijah’s room is breath taking and I know this has come from you, I feel peace.

All the kids have come and seen Elijah, they are doing great and want to send a special thanks out to my parents for their amazing devotion and unconditional love to myself and all the grand children. Knowing you are so wonderful has given me such peace as a parent who is torn. To Ron’s parents who have come to the hospital everyday to give Ronnie and I support. Even if it feels like their is nothing they can do except sit and stare at monitors. To my sister who came and stayed up all night taking shifts for support and a shoulder. To all the medical staff, thank you! What a difficult delicate job you have and you never stop. To Allison and Meredith two of our warrior nurses, who never leave your side and work all day to save our boy. Meredith was with Eli his long night, and worked 12 hours without breaks eating at Eli’s bedside and comforting Ron and I as she went. Allison who has made me feel like she is our family. Explaining everything working nonstop talking and loving Elijah, hugging me, laughing with us, singing with me to Eli, Thank you. To  Everyone your emails, gifts, flowers, calls, messages, thoughts and prayers have not gone unnoticed. I personally read everyone of them and tell Elijah, as I read them I cry, I laugh, I feel overwhelmed with love and support!!!! I am so thankful to all of you, please do not give up on us we are fighting, I promise.

I will leave you with some good moments of the day. Eli meeting his brother and sisters again!

 

 

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A good night

Yes he had a good night. What does that mean though? While still on all his life saving machines, 15 different IV lines, and EEG machine Elijah had a night that was considered in the positive direction. He was weened off 3 medicines to stabilize his blood pressure and he is doing most of this work on his own now. His Lactate levels rose again to 11.8 but after 6 hours have come back down to a 7!!!!!! This is just great for him. They have gotten some of the fluid off his lungs and the x ray looked much better today. Baby E even got a bath and had socks put on.He even surprised everyone and opened an eye, but we did quickly sedate him after this so he wouldn’t have to feel anxiety about what was happening to him. I know his spirit is strong and this is his way of showing us.

I have told Eli over and over how proud I am of him and what a great job he is doing. I have also talked with him about holding him soon and letting him feel my heart again. I feel like this is motivating our little man. I kiss his feet and his little chest and just this touch of him has allowed my milk to come in and my mommy instincts are in full gear.  He looks just like his daddy and has the Farhat lips that I can’t wait to kiss. Even with 3 pounds of fluid on his body he is so amazingly beautiful.

My heart is filled with pride that my baby boy is so strong and I know he feels gods love as well as mine, and Ron’s.

The big brother and sisters are doing well a few funny quotes from there mouth to gods ear.

Ryan Mae(6) “I am new at this big sister thing, I need everyone to be patient with me”

Paige (8) “My heart knows inside it he will be ok, I feel it. God tells me”

Carter (11) “He looks like he has been in a fight, like Rocky”

Lexi (10) “Hey every bodie I think that we all should pray for Eli every night and every morning just so we can see if god herd our cry so that we all can someday have a happy little baby.”

Ryan Mae (6)  about the grand parents seeing Eli yesterday. “It is fair I am his sister why can’t I see him.”

Eli Monkey Socks

 

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Little Fighter

Update on our little fighter.

With all the struggles that Eli went through over the last 48 hours we have found out new information. Unfortunately Eli has suffered a brain bleed on top of everything. It is considered mild a level 1 but this makes for more testing and stress. He has been on a EEG all day and what we know is he is not suffering from seizures from the bleed and the doctors also do not see anything else as well. However to make sure he has no permanent damage he will also be receiving a MRI on Sunday. 

The good news would be levels are trending down still the Lactate level is down to a 9.8 and everyone is happy for this. Eli is carrying a lot of fluid on his body which is to be expected but some is collecting on his lungs now.

We need to continue to receive support for Elijah and that he continues to stabilize and pass his daily tests and get good results, as his surgery is still scheduled for Monday. 

I will leave you with a song that I sang all night to Eli and it puts everything into perspective for me.

Trust

Lest I’m tempted to forget, I’ll tie your love around my neck, I’ll write your words upon my heart Lord I wont forget how good you are. I’ll dwell upon your faithfulness I’ll rest within your promises and when I’m walking through the dark Lord I won’t forget how good you are. I will trust, I will trust you.

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Tough Night

I sit here next to Eli and wonder what do I write to explain this night? I hear his life saving machines hard at work, pumping oxygen, dispensing medicine, beeping if his levels are to low, beeping if they are to high.I still feel blessed. We were told to take it one hour at a time and 12 hours later Elijah is still here and taking small steps to stabilize. The nurses and doctors never leave him and never stop moving, they are working miracles on our son.

Elijah is slowly heading in the right direction but by no means is he out of the woods. They stabilize one thing and another heads south.  He had very high sugar levels as well as lactate levels, the lactate levels being the most disturbing. The doctors has gotten his sugar levels under control and Elijah is maintaining these on his own now. We have gotten his Lactate numbers down from about 25 to 16. To put this number in perspective however a normal baby level should be 3 so he still has a lot of work to do but we are trending in the right direction.

To everyone who read our pleas for help, THANK YOU!  To those of you who started new prayer chains and reached out for help to people who don’t even know us, THANK YOU!!! I am asking for so much from everyone but please it worked so far, GOD is listening.

Just like during my pregnancy I have Elijah’s playlist on the IPod and sing out loud to him, and he likes it…haha! I kiss his precious foot, hold his tiny leg, and rub his head of hair. He is truly amazing and loved.

Tera

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1 day old

1 day old

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April 19, 2012 · 7:03 pm

Our Beautiful Boy

I know you are all waiting on an update and I am sorry it has taken so long.I’m sure you can imagine after have a c-section at noon yesterday, having all the kids, parents and most all uncle and aunts up here it was very chaotic. As well as coordinating a Baptism and care for Eli and myself. But finally we have a moment to sit and reflect.

Elijah Thomas weighed 5lbs 6oz, and was 17 1/2 inches long. He has a head full of dark brown wavy hair. I must say he is extremely handsome like his dad. He scored 8’s on his Apgar and was pink and screaming his lungs out a very precious sound to my ears.

He is stable now and did have to be but on a respirator.He is going in for a small procedure this morning in the Catheter Lab. They will send a catheter through his artery in his groin to take pictures of the inner working of his heart. What we know as of now, the heart looks somewhat worse than what was originally though. The diagnosis has not changed just on the worse end instead of the better end of the spectrum. The doctors know Eli’s pulmonary artery will now need to be widened, and he has two large sinusoid s. These are a little more worrisome because they don’t know what to do with them. The pictures will help come up with a plan. His large surgery is still planned for Monday.

We have had a lot of time to get ready for what we are going through, however what I realize is nothing can get you ready for this. We will trust God and let him hold our family in his arms.

Tera

Pictures to come!

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Brave Little Soul

Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing
the world. He especially enjoyed the love he saw there and often expressed this
joy with God. One day however the little soul was sad, for on this day he saw
suffering in the world. He approached God and sadly asked, “Why do bad things
happen; why is there suffering in the world?” God paused for a moment and
replied, “Little soul, do not be sad, for the suffering you see, unlocks the
love in people’s hearts.” The little soul was confused. “What do you mean,” he
asked. God replied, “Have you not noticed the goodness and love that is the
offspring of that suffering? Look at how people come together, drop their
differences and show their love and compassion for those who suffer. All their
other motivations disappear and they become motivated by love alone.” The little
soul began to understand and listened attentively as God continued, “The
suffering soul unlocks the love in people’s hearts much like the sun and the
rain unlock the flower within the seed. I created everyone with endless love in
their heart, but unfortunately most people keep it locked up and hardly share it
with anyone. They are afraid to let their love shine freely, because they are
afraid of being hurt. But a suffering soul unlocks that love. I tell you this –
it is the greatest miracle of all. Many souls have bravely chosen to go into the
world and suffer – to unlock this love – to create this miracle for the good of
all humanity.”
Just then the little soul got a wonderful idea and could hardly contain himself.
With his wings fluttering, bouncing up and down, the little soul excitedly
replied. “I am brave; let me go! I would like to go into the world and suffer so
that I can unlock the goodness and love in people’s hearts! I want to create
that miracle!” God smiled and said, “You are a brave soul I know, and thus I
will grant your request. But even though you are very brave you will not be able
to do this alone. I have known since the beginning of time that you would ask
for this and so I have carefully selected many souls to care for you on your
journey. Those souls will help you create your miracle; however they will also
share in your suffering. Two of these souls are most special and will care for
you, help you and suffer along with you, far beyond the others. They have
already chosen a name for you”. God and the brave soul shared a smile, and then
embraced.
In parting, God said, “Do not forget little soul that I will be with you always.
Although you have agreed to bear the pain, you will do so through my strength.
And if the time should come when you feel that you have suffered enough, just
say the word, think the thought, and you will be healed.” Thus at that moment
the brave little soul was born into the world, and through his suffering and
God’s strength, he unlocked the goodness and love in people’s hearts. For so
many people dropped their differences and came together to show their love.
Priorities became properly aligned. People gave from their hearts. Those that
were always too busy found time. Many began new spiritual journeys, some
regained lost faith – many came back to God. Parents hugged their children
tighter. Friends and family grew closer. Old friends got together and new
friendships were made. Distant family reunited, and every family spent more time
together. Everyone prayed. Peace and love reigned. Lives changed forever. It was
good. The world was a better place. The miracle had happened. God was pleased

“He heals the brokenhearted and binds up their wounds” Psalm 147:

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April 18th new birthday for Baby Eli

Just as nothing has gone as planned in the pregnancy of Elijah, the delivery is proving the same rule.

We were admitted Monday evening and beta prednisone steroids were started. As of now I have received two rounds of the steroids and will be delivering Elijah on April 18th.

We are asking for prayers for the safe delivery and stabilization of  Elijah. That Elijah and our entire family will be provided with strength and peace in the coming days.

We are so thankful for our great support team of family and friends.

Love Tera and Ron

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Elijah 33 weeks gestation

Elijah 33 weeks gestation

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April 14, 2012 · 5:27 pm