Monthly Archives: April 2012

Waiting

Here we sit in the waiting room trying to focus on anything but what is happening.I hear the murmur of everything from talk about the girls dance recital, to not liking nuts in bake goods, it’s just weird.  I write, I wait, don’t think, don’t think, I write.

Last night we went to our new home the Ronald McDonald house feeling exhausted from being at the hospital all day. The emotional toll of talking about Eli’s surgery could wear you down alone but we are all faced with waiting to hear from the neurologists, cardiologists, surgeons,  Kidney function, we hear mortality rates, recovery times, the list goes on and on. I think when my head hits the pillow I wont wake up until I feel a certain sting letting me know it’s time to pump, I was wrong. I pray and pray. I pray for Elijah to know what it’s like to feel the comfort of me holding him, I pray he will laugh, that he will play with his his siblings, I pray he will know god, I pray he will use his struggles to teach of god one day, I pray we go on vacation, I pray for god to use Dr Bove to heal my son, I pray for gods will, I pray and pray, all night. 5:00 am I’m up, I need my son, I need to see him and hear him, I know I will hold him. I wake up Ron and I wait for him to shower and I’m on my knees again I pray for peace, I pray for strength, I pray for god to hold me.

Allison our nurse is waiting for us to get to the hospital she is going to let us hold Elijah for the 1st time ever since he was born. I am ready they place his tiny body in my arms, I cry. Tears stream down my face and drip onto my boy. He can hear my heart, he seems peaceful, he tries to open his eyes and look at me. I hold him, I sing to him, I smile and tune out all the monitors and IV’s And all I see is my miracle boy. Ron holds him, I treasure seeing daddy at peace with Eli, looking into his eyes holding his hand. For a brief moment everything feels perfect. Then Jenn our nurse says it’s time to get him ready, they lay Elijah back on the bed for transport, it is like Elijah knows something is happening his eyes are opening and he is looking around. I am there I tell him, I love him and he is strong and I’m waiting, I tell him over and over. We love you strong boy, god is holding you…they leave. I am standing their trying to fight tears I pick up my things and I move to wait.

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ELIJAH

When we found out we were having a boy we already knew something was wrong with Elijah. This was still amazing news, if you know Ron you know he always wanted to have a boy since he already a perfect little girl “Lexi”. He also wanted to name his son Ronald or Ricco. I had many out loud belly laughs with Ron over this. “Ricco” I said maybe if we had a Hispanic heritage, but not with a Lebanese, English and Italian Heritage. I spent all day looking up family names and their meanings. I knew I loved the name Thomas and Joesph but there was something about Elijah I couldn’t shake. This is my daddy’s middle name. Ever since I was little I loved saying it and when my amazing grandma Parry told me about how she named my dad, I loved the story. My grandpa did not like the name and she wanted it to be my dad’s name so bad, after much discussion with my  grandpa they decided it would be his middle name “Terry Elijah Parry”. I then looked up the meaning of Elijah, I knew the bible stories of the prophet Elijah, but I did not know the meaning. Then the computer pulled up “Elijah, Hebrew boys name meaning My god is Lord” I knew in that moment with all my heart that god had this plan all along starting with the seed in my grandma’s brain and moving to tell me this was what my son was to be named. Never in my life had I felt so strong in knowing gods plan as I did that moment. Ron was gone to the Big ten championship game with Alex and I called and told him I named our baby boy and his name is going to be after all the fathers, Elijah Thomas Farhat. Ron didn’t argue or say anything except “OK” and our son was named. Every time I say his name I am reminded of how I was drawn by god to always know he was in safe hands. Elijah is my dad’s middle name and Thomas is Ron’s dad’s middle name.

Now about Eli this morning. What a great night again, Eli is off all his Epi and they have cut his Dopamine in half. These are both medications to control blood pressure. Eli is doing an amazing job controlling his blood pressure on his own. For having a broken heart it is a strong heart and he knows it. He was peeing so well they took out his catheter and he only is using a diaper, and he pooped!!! Excellent news again the little things that make me happy. He in fact is doing so well they moved surgery again it will be tomorrow morning at 9 am, so we need our prayer teams in full effect for the next 72 hours to pull our miracle boy through this and give us strength.

2 Corinthians 12:9

Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me

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Enjoying the little things

Good morning everyone! We had another great night Eli has lost over a pound of fluids, and he is still peeing!!!! All his levels are where they need to be, and at 4pm he is getting his MRI. Those are all the steps forward, but like I wrote about in our earlier post we always have a step back as well. Eli’s Kidneys are finally reacting to all he has been through with medicine, and trauma. They are just starting to show an elevated creatinine level. This may mean dialysis in the very near future.

We need to continue to pray for Elijah to have good results from his MRI, that his kidney’s hang in there, that he remains stable with his gases, blood pressure and pulse ox. Pray for the surgeons and medical staff that God will work through their hands to heal our miracle boy.

What I have reflected on for the past day is all the little things that have brought joy to us. Elijah peeing!! Holding the little mans hand, a glimpse at his eyes (I had never seen him with his eyes open and got to see this twice yesterday). Eli’s facial expressions, he was unhappy being moved yesterday and showed it on his face (he almost cried). To everyone else I’m sure you are thinking she was happy when E almost cried? However for us to look at our son who had been paralyzed for 4 days and see him react was amazing. when I feel him respond to me by moving his little toe or foot. When Eli holds daddy’s finger. Today he has clothes on that I bought him, I envisioned him wearing everyday since they were purchased. ( I would run around the house and hold the giraffe hat up and say” isn’t this so sweet?” Ron would say with not much excitment in his voice “yes Honey”).

Eli and Lexi had face time last night and she talked to him and saw him get cleaned up and repositioned. Just so many great moments I am so lucky to have.

I am aching to hold Elijah, a true ache that can’t be explained. It’s like wanting something so bad that it suffocates you. I lay my head next to him and can’t keep my lips off his chubby checks. My heart throbs, the throat tightens, I can’t speak, tears well, then I can’t control it, they come. Thank you God! Elijah is here and breathing life and we feel you holding both of us.

Dr Crowley just came and told us they put Elijah on the surgical board for Friday morning.

It’s a zoo of a morning!

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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!

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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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