Happy One Month Birthday to Eliana!

For those of you who are not on the Prayer Warrior e-mail list, here is an update on little Eliana. There have been so many ups and downs during the last month. She is finally off the heart machine and her chest was closed yesterday. She needs prayers for her kidneys, lungs and that she avoids infection. What a brave little soul she is and how wonderful are the Prayer Warriors. Eliana is on the prayer list for daily mass at the Newman Center at UNLV, she is on the prayer list for the Las Vegas LDS Temple where prayers are said every two hours, many smaller churches have placed her in their prayers as well as the faithful friends who remember her every day. As you can see from the update from Ellie's Grandmother, the family is exhausted but is being sustained by the faith of so many people whom they have never met but who care passionately about this tiny child.

So, when you have a moment to spare, please send a message heaven bound.

Light & Love,

Granny B.

p/s: I promise a posting on the dating sites soon. 

Email message September 27, 2009   From Gramma Penny

Happy One Month Birthday to Eliana!

I have attached a picture to celebrate her 1 month birthday. The tubes are in but you cannot see them. They will probably remove the tubes in a couple of days.

Update briefs

Late last night they tried to start to wean Ellie off the respirator but a bit too soon -probably because the trunk is still swollen (Each doctor is different but I am not sure that this one is used to the pace at which this Mighty Mouse travels.)

She had 40cc of pee at midnight and some more since then.

They gave her a little more blood to pinken her up.

Apparently Ellie had a little melt down when the nurse tried to move her today and they had a code blue. Becky was out of the room at the time. (Which was probably a good thing?) Eliana is fine now. She stabilized on her own. That thought it might just be the respirator tube getting caught with the last move. They bagged her and she is fine now.

Becky admits to being tired. I am exhausted and had already said I was not going to go to the hospital today. I can tell that lack of sleep, stress and poor eating are wreaking havoc on my body.

Please pray for all of us that we are smart enough to take care of ourselves and not feel guilty about it. I am trying to convince Becky to go home as well. She told me “stop pestering  J – she will go home tonight and rest up. No worries.” Of course I feel badly that I am not going in order to relieve her – ah it is a vicious circle…but I tell myself that if I am not well I cannot be of help (so much easier said than done)

I think this is when turning things over to God and trust need to again come into play… I am human – I am older – I am tired – I am emotionally and physically spent. Perhaps yet again I am being encouraged to not just bring my cares to God but to leave them with God! Now you see why I take such solace in the frailties of so many of the people described in the bible!

 Do you not know? Have you not heard?
         The Everlasting God, the LORD, the Creator of the ends of the earth
         Does not become weary or tired
         His understanding is inscrutable.
   He gives strength to the weary,
         And to him who lacks might He increases power.
   Though youths grow weary and tired,
         And vigorous young men stumble badly,
   Yet those who wait for the LORD
         Will gain new strength;
         They will mount up with wings like eagles,
         They will run and not get tired,
         They will walk and not become weary.

Isaiah 40:28-31

I need to reread the passage above while in my humanity I take comfort from the reaction of Abraham and Sarah to the promises of God. 

Then Abraham fell on his face and laughed, and said in his heart, ‘”Will a child be born to a man one hundred years old? And will Sarah, who is ninety years old, bear a child?” Genesis 17:17

Sarah laughed to herself, saying, "After I have become old, shall I have pleasure, my lord being old also?"

And the LORD said to Abraham, "Why did Sarah laugh, saying, 'Shall I indeed bear a child, when I am so old?'

Is anything too difficult for the LORD?...”

Genesis 18: 12-14

Perhaps I need to recall that Eliana’s name means – God answer – God is the answer.

Again thank you for your prayers, support and love. It is appreciated more than you know.

God’s blessing on you,

Penny

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Dear Prayer Warriors,

As we pray for God’s Hand and Mercy to lie gently upon Eliana, let us also pray that He sustain her family and her medical team. Every day of the last month has been like a year of stress and tension, of prayers silently offered up from our hearts with love and trust in God.  We have been together for nearly a month and surely we have seen the power of faith. Eliana has become a part of our lives and we marvel at her courage and desire for life. So, here we are on the last Sunday in September: This is the day the Lord has made, let us rejoice and be glad! These are difficult time in so many ways. As we pray for Eliana, her family and medical team, let us also pray for each other and ask God to watch over us all.

Evan

From Penny:

Email September 26, 2009

Praise God we have a closed chest!!

It went great. There was no change in vital signs, Eliana was as stable as can be. They usually use skin glue but the surgeon used sutures because it would be easier to manage if there was an infection.

My emotions are like partially congealed Jell-O – with this awesome news I find myself crying…

Obviously we need to continue to pray that there will be no infection. In addition, though peeing was a VERY major step, it is only one in the process of the kidneys truly functioning. One thing kidneys do – as I understood from the explanation last night – is keep the ph balance in the body. At this point they are needing to put lots of bicarbs into Ellie because the acidity levels are very high. In addition I am thinking they still need the dialysis to remove the impurities. I may learn more and will try to share.

I am in awe of the power of God! I am thankful for God’s lovingkindness! I am grateful for God’s grace. God’s glory and mercy is beyond any words I know.

God - I AM WHO AM

O give thanks to the LORD, for He is good; For His lovingkindness is everlasting.

1 Chronicles 16:34

I will give thanks to the LORD according to His righteousness

     And will sing praise to the name of the LORD Most High.
Psalm 7:17

I will give thanks to the LORD with all my heart;

     I will tell of all Your wonders.
Psalm 9:1

You have turned for me my mourning into dancing;
     You have loosed my sackcloth and girded me with gladness,
That my soul may sing praise to You and not be silent
     O LORD my God, I will give thanks to You forever.

Psalm 30:11-12

Therefore I will give thanks to You among the nations, O LORD,

    And I will sing praises to your name.

Psalm 18:49

God’s blessings on you for all you are,

Penny

 From Penny #2:  See the photos above, they were taken today before and after the surgery.

From Penny #3: Ellie’s white count is up but no sign of infection. Please continue prayers there is so much more to come.  Thanks to all of you and blessings upon you and yours.

Penny

Eliana is two weeks old today: Thanks be to God!

Today, Eliana began her third week of life. What a life it has been so far! First she is taken early from her mother's womb because her little heart is deteriorating. The medical team stabilizes her and makes plans for surgery when she is stronger but time runs out. A week ago today, she was rolled into the surgical suite where the medical team swabbed her infant chest with disinfectant and her cardiac surgeon began the first cut. For hours, the doctors labored over the tiny heart, roughly the size of a walnut. They repaired and stitched and gave their all to save this wee little girl.

The past week has been a roller coaster. One step forward and then one backward. Many of you have been receiving a daily update from me containing the messages that I received from the family. But for those of you who are only reading the blog, here is a brief day by day recap:

9/02: Wednesday: Eliana had a difficult day and the team worked hard to stabilize her for surgery.

9/03: Thursday: The surgery began around 9am. and continued thru the day. The surgeon was very pleased although there was some bleeding. Her tiny chest was left open and she went to the Pediatric ICU where she has two full time nurses and so much equipment that two full ICU spaces are dedicated to her. Not long after her arrival, she began have problems breathing and her heart rate was slowing so she was placed on a ECMO machine, which maintained her heart and lung function. There were serious problems involved with using the machine and children who are placed on it usually only have a 40% percent chance of survival.

9/4: Friday: Eliana is stable with some blood loss. Lymphatic gasses are very high but are coming down. The medical team was able to get the camera into her chest and check her replaced valve, it is leaking some and they did a little repair. Her heart rhythm is off so they will change her meds. Family advised of the side effects of the ECMO which include bleeding, blood clots, blood on the brain and organ failure so Eliana will have a brain scan daily. Chromosome tests are back; she does have Digeorges syndrome which means that she is missing part of a chromosome and her heart problem is related to the syndrome.

9/5: Saturday: Color is good today. Brain scan is clear, kidney ultrasound is good, lymphatic gas number is down from 11 to 3.5. She has lost some weight so they will increase her fluid intake and she peed. Eliana has opened her eyes and moved a little today.

9/6: Sunday: Vital signs are good and all repairs look good. Medical team tried to remove her from ECMO but the right side of her heart wasn't strong enough and her lungs are not inflating properly. Team plans to work on her lungs by gently inflating them. They will try again tomorrow to remove her from the ECMO.

9/7: Monday: Eliana had a bad night. Bleeding has increased and she was crying so received some pain medication. If the bleeding doesn't slow or stop the surgeon will go back in and do more repair. No attempt to removed from from ECMO today, maybe tomorrow. Brain scan normal.

9/8: Tuesday: Surgeon went in last night and cleaned up heart so blood loss is way less today. This morning she had a little blip and her heart started racing with an irregular beat so she was medicated and given a little pain medicine. Brain scan is normal. Decision made not to try and take her off ECMO and stress her any. Penny and Don were allowed into the PICU to see and touch her. Penny held her little hand and Eliana clasped her finger and hung on to it. They can't wait for her to be well and snuggled in their arms.

9/9: Wednesday: Her color is good this morning, eyes are open. She has developed a slight kidney problem. The team is working on her lungs. Brain scan was normal. Team hopes to get her off ECMO tomorrow.

9/10: Thursday: Color and blood pressure are good today and her eyes are open. Team started dialysis to support kidneys and keep toxins from building in her blood. Eliana removed from ECMO and breathing on her own. Her condition is still critical but improving.

9/11: Friday: Early morning report: Still breathing on her own but having a little problem with blood pressure so they will give her some blood.

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This post was started on Thursday night and finished today around noon. In each message from Grandmother Penny she sends the family's most heartfelt thanks for all the prayers and support. Strangers who have never met the family are praying for this child of God. Her name has been added to the prayer book for Catholic Mass at the Newman Center at UNLV. An LDS prayer group is praying for her, the family and her medical team, several churches have prayer groups sending petitions upward to heaven. People from all religions are mingling their prayers and thoughts, sending love, blessings and light to this family, the medical team and for the tiny child God is holding in His Hands.

Thank each one of you for opening your hearts. This is going to be a long journey, so please stay with Eliana. If you would like to send any message to the family, either post on the blog or send to me and I will forward to them.

P/S: Eliana is a Hebrew name which translates: God is my answer or God has answered me. It is pronounced: EL - long e - ah- nah.

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Latest update for today: Friday 9/11 from Penny:

I am happy to send the message below from Becky. She is so grateful for all the prayers and may we all be blessed by this miracle. The news is optimistic but guarded so please don't stop praying. I have also included a picture I don't think I sent it before, of Eliana and her Mommy holding hand (finger)!

"Ok the surgeon came by this morning and thought we were looking pretty good. He would remain somewhat guarded but he was quite pleased. Thought lungs and to some extent kidneys are what we need to keep an eye on. The cardiologist did and echo this morning and all the repairs looked good. There some thought there might be some blockage in the pulmonary arteries (things to lungs) but they want to get more views as hard to see. That would be something fairly fixable if it needs to be though they are in no rush to go in. They will look more next week, nothing to panic about but something to keep an eye on. Surgeon just came by again thought the blockage was a possibility but wasn't sure so again just something they will keep an eye on. He's pleased her lactates are going down. If all continues well the plan is to keep as is over the weekend. On Monday the surgeon would go in and clean her up a wee bit and like make the chest opening a bit smaller with the idea to try and close her up end of next week. All goes well we probably have about four more weeks in hospital with dialysis and getting her eating. Oh and I was out pumping when the cardiologist first came and I guess he said Ellie was a strong and stubborn little girl. Apparently Chris took credit for one and laughed about the other...who knew he thought I was so strong ;-) "

You have all been such a blessing to us! May you be blessed as well as we continue this healing journey!

"...and I will bless you, and make your name great; and so you shall be a blessing; and I will bless those who bless you." Genesis:12 2-3

"Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ." Ephesians 1:3

bit of humor - I got to the kitchen this morning and realized I had put my pants on backwards! For those who don't know me I am a large woman and I have no idea how I managed that feat - and without even noticing it! Silly Gramma

Penny

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Light & Love,

Granny B

As the night slides into morning...

I am one woman sitting alone in silence, trying to channel the essence of my spirit towards a very small flicker of life. I look at the two photos of her and marvel at her beauty. Her name is Eliana and she was born was born last Thursday so by the time I finish this post, she will be one week old. Right now her medical team is sleeping in their beds, bodies and minds resting in preparation for the task they will face in a few hours. The surgical suite is sterile and empty but in a few hours it will be filled with people, a team of women and men who will do everything in their power to save this child. I can barely imagine the machines that will breathe for her and keep her blood moving through her tiny body. Her little chest will be swabbed and sterilized and the surgeon will mark where he will begin the incision to open her infant chest.

I have no comprehension of the details of this, oh so delicate, surgery on her tiny heart. I only know the risks are too great to wait any longer. I have visions of the doctor's large hands working deep inside such a small space... of the watchful eyes following the monitors tracking her blood pressure, her breathing, her brain pattern...of the hands of nurses passing sterile cold metal instruments to the surgeons... of blood soaked gauze pads being discarded as the operation proceeds. How much blood can such a tiny body contain?

MWDL (most wonderful daughter in law) and I met Don, Eliana's grandfather, at a large craft show and greatly admired the jewelry he was selling. I don't think at that time we had ever done a show ourselves. We chatted and he told us all the jewelry was made by Penny, his wife. We would see him again and again at shows, at First Friday and other venues. When our work developed to the point that we felt confident in participating in our first show, Don was there. I had long been kidding him that I didn't Penny existed as I had never seen her. Later in the afternoon, a woman walked into our space and said "I understand that you don't think I exist, well here I am."

We just hit it off, talked and exchanged e-mail and telephone numbers. From time to time, we would contact each other. Advice flowed from Penny freely. She gave us the inside on various shows and what we could expect. We talked about style, designs and sources for beads. She invited us to come up to the north part of the valley to visit but somehow we just never got together except by computer and telephone.

Towards the end of July, Penny sent a message letting me know that the new baby had severe heart problems and would require surgery very soon after her birth. She wasn't due last week but her heart was deteriorating and it was necessary to perform a C-section and get her on support. So her birthday advanced a bit.

Penny asked me for my prayers. I don't know my standing with God. I believe in some greater power but I have a problem with organized churches and rarely attend any services other than weddings and funerals. Frankly, I am not certain that I am worthy to pray for Eliana but I have been and I am right now. I have also sent requests to many of you and asked you to send your light, love and prayers for her. I figured I wouldn't stand out in a crowd. So thanks to all of you for letting me hide among you.

Morning is rolling slowly toward us. The dawn will be lightening on the rocky coasts of Maine, the shinning towers of Manhattan, the beaches of Florida. In a couple of hours, the sun will rise like a great red ball over the jagged peaks of Frenchman's mountain.

We don't know what this day will bring. This may be the last day on earth for Eliana or, by the Grace of God, the first day of her journey to a full and normal life. This is a betting town and you know where I will put my money! Eliana is in the Hands of God and the only support each of us can offer, is our prayers. So let us bring to this day the only things we have, faith and love.

As soon as you receive this , please find a quiet place and focus your thoughts, send forth your light and prayers for Eliana, her family and her medical team.

While we are praying, let us also remember the countless people, uninsured and underinsured, in our country who have no access to any type of medical treatment which gives them a fighting chance. May God have mercy on us all.

As soon I know more, I will be back with that info for you.

Light & Love,

Evan aka Granny.