Ellie Louise

Update Wednesday

12-26-12 1 retouchWe were at the pediatricians office first thing this morning to figure out how to proceed with Ellie.

She has pneumonia, likely caused by her weakened immune system. We have new, stronger antibiotics now that will hopefully knock out this infection.

We had an apnea episode last night, but were able to get her re-situated.

She is so small and fragile – we covet your prayers for her health and well-being.

Please pray…..

  • That this new antibiotic will do the trick and that her temp would come down within 48 hours.
  • That her lungs would be completely clear.
  • That she would not lose anymore weight.
  • That she would not have any more apnea episodes.
  • For good health for our family.

Thank you so much for your kind encouragement and prayers.

Charlotte

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Merry Christmas!

Merry Christmas from the cushmans

Ellie is doing so well this early Christmas Morning.

So thankful for God’s grace and mercy on us this holiday.

She is still very congested and is still running a temperature, but she is resting comfortably and looks really good.

Please pray for her to get completely cleared up from this illness and also for her to able to start gaining weight again.

The Lord be praised we have not had any apnea episodes at all since yesterday morning at 4 am.

THANK YOU for praying.

Merry Christmas!

Charlotte

12-25-12 1

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Afternoon Update 12-24-12 Christmas Eve

Latest news from Ellieville – 12-24-12 1

We are thanking the Lord that Ellie has not had any apnea episodes since this morning. Her wonderful hospice nurse Lynn came to see her and confirmed that she does now have something going on in her lungs.
Our pediatrician has given us a nebulizer to use and we are alternating breathing treatments, feedings and oxygen. She is also on antibiotics for the possible infection, and continues to run a temp which we are controlling via Tylenol.
She looks great and is comfortable, which we are so thankful for.
Medically our team doesn’t really know what to think of her, which I think is characteristic for kids with Trisomy 18. It is hard to pin down the why of what is going on with them.
But I do know the “Who” that has been using our sweet little girl for His purposes and keeping her with us for right now and in this minute. I am so thankful for the Lord who has shown His grace and mercy in our lives once again.
Specific prayers –
  • For Ellie to live!
  • That Ellie would continue to breathe on her own, grow stronger and be able to increase her intake of food.
  • For her lungs to clear up completely and that we would not have to have her admitted to the hospital.
  • That the temperature was caused by an infection and not brain damage from lack of oxygen.
  • That any infection would be completely cured.
  • Teamwork in our home.
  • For our night to be smooth and very uneventful.
Thank you so much for your prayers. Praising God for each of you.
Chris and Charlotte
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Joy comes in the morning

Psalm 30:1-5

I will extol you, O Lord, for you have drawn me up and have not let my foes rejoice over me.

O Lord my God, I cried to you for help,  and you have healed me.

O Lord, you have brought up my soul from Sheol;  you restored me to life from among those who go down to the pit.

 Sing praises to the Lord, O you his saints, and give thanks to his holy name. 

 For his anger is but for a moment, and his favor is for a lifetime.

Weeping may tarry for the night, but joy comes with the morning.

I had been watching the sweet baby sleep since one o’clock, occasionally dozing myself and then starting awake to see her little face. Her chest was moving up and down, up and down.

While I was watching, I saw her movements change, slow and stop.

“This is it,” I thought. The moment had come.

I woke Chris and said, “Here, come hold Ellie.”

He took her and sat in our rocking chair and we held her, crying and watching her last few feeble breaths. Watching her go completely still.

Her pulse was faint… almost nonexistent.

We quietly cried thinking our private thoughts…

Minute after minute seemed to pass.

Then….

Cough. Sputter. Cough.

Big eyes.

Old Ellie. Staring, looking and squeaking at us.

Um… could you folks feed me please?

12-24-12 - 2 Feed Me

Thank you Lord Jesus.

I don’t know what today will hold. But I am thankful for a 4 am reprieve. Another outfit change.

Another chance to feel her breathe in and out.

A wonderful way to start Christmas Eve Day.

Love to you all… will keep you posted.

Charlotte

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Ellie’s Late Night Update

12-23 me and ellie We had a tough afternoon but our night has been better.

Ellie had a temp of 101.6 so the nurse had us give her some Tylenol. They are unsure whether it is an infection or if  her brain cannot regulate her temp anymore.

Chris asked hospice if we could have oxygen and they brought some.

She really has perked up tonight with the oxygen and we have been successful in getting some feeds in.

Also her bowel movement issues seem to have stopped.

Praise be to the Lord for He has been answering our prayers … please keep praying!12-23 chris and ellie

Things to pray for –

  • For Ellie to continue to breathe on her own and initiate her own breaths.
  • That if she has an infection that she would be completely healed.
  • That she would get some good sleep tonight and that it would give her what she needs for tomorrow’s challenges.
  • That she  would get strong. That we would be able to get her back up to a full feeding.
  • For no lasting effects from the lack of oxygen that she has been experiencing.
  • That she would grow grow grow grow….
  • That the Lord would be gracious to all of us and let her stay with us. We love her so.

12-23 Brooke and ellieThank you to all of you who brought food, songs,  gifts and kind words. We so appreciate everyone’s kindness to our family.

Especially touched by those who have, out of their own grief, sacrificially shown their love us. You are truly Jesus’ hands and feet.

Praying throughout the night.

Do not withhold your mercy from me; O Lord; may your love and your truth always protect me. Psalm 40:11

Chris and Charlotte

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12-23-12 Morning Update

Your love, O Lord, reaches to the heavens, your faithfulness to the skies. Your righteousness is like the mighty mountains, your justice like the great deep. O Lord, you preserve both man and beast. Psalm 36:5-6

12-23-12 eeeEllie got some much needed sleep last night.

We have been able to feed her twice.

We are continuing to deal with episodes… but we did get to enjoy some Ellie-like time during her sponge bath and when she got her meds and dressed this morning. I think she is “totally fashion” as Susanbaby says.

Chris is holding her for all that it is worth… because she seems to do best in his arms. My job is to help her, talk to her when she stops breathing.

Her bowel movement issues seem much improved today. But she woke with a temp and with a cough this morning… which is instigating her episodes now. The doctor has prescribed an antibiotic for this and we are hopeful that with continued feedings she will regain her strength and be able to pull through this.12-23-12 e

  • Please pray for her lungs and body to clear of infection.
  • For her to be able to breathe on her own.
  • For her to be able to tolerate her feedings well and keep them down.
  • For us to wait on the Lord and to have His strength.

Thank you all…

Chris and Charlotte

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Late night update

11-5-12

This is picture from October.

Thank you to all of you who have been praying… those of you who called, emailed, messaged and texted. We are so appreciative of you bringing little Ellie before our Father’s throne of grace. What a testimony to us you all are in your faithfulness.

Late night update –

The kids and Brittany all prayed so sweetly tonight over her before they went to bed. They have such tender hearts for her and their prayers are refreshing and to the point.

Ellie is eating right now and Chris is holding her and she looks very sweet:)

We had a rough day… but we are walking through it. Ellie is being a trooper….. she has been much handled today and has not had a lot of rest.  We are so hopeful that she will have a good night and that we can get past these episodes and back to her normal good health.

Specific prayers

  • That God would give us much wisdom as to what to do at every step.
  • That we would make it through the night with her and that she would have a chance to regain her strength.
  • That she would be able to eat.
  • That she would not pass out and forget to breathe again when she is straining with a bm.
  • That we can regulate her bowel movements to not be agitating.

I am so praying that Ellie will live to tell her own story one day.

Thank you for praying with us.

Charlotte & Chris

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Please pray fervently for Ellie

Quick update on Ellie –

Merry Christmas

Ellie has been coming down with a cold all week. 12-9-12 - ECL

In addition she has been struggling with constipation. Because she doesn’t have the muscle strength to push effectively, it wears her out. The result yesterday was that every time she tried to have a bm she stopped breathing.

After taking her to the pediatrician, we confirmed that she does not bronchitis or something in her lungs.

Her brain just seems to be forgetting to trigger her breathing after she bears down. We have been helping her get started breathing again by re-positioning her and giving her some breaths.

Right now we are trying to feed her, to keep her hydrated.

Please pray for the following:

  • That Ellie would get stronger.
  • That we would be able to get her back on her regular feedings.
  • That she would be completely healthy and get rid of this cold.
  • That we could get her on the right medications to make bowel movements easy for her.
  • That she would breathe.
  • For comfort for our other children and for their hearts if Ellie continues to get weaker.
  • For Chris and I to walk through this with grace and love.
  • That we could keep our little girl. 12-22-12 tag

Thank you.

Charlotte & Chris

12-22-12

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Ellie’s sister’s birthday 12-12-12

Well some of you may know that Ellie has a few siblings. Well 7 to be exact.

Boy – Girl – Girl – Boy – Boy – Girl – Boy – Girl is the order.

Today is is # 2 girl’s birthday.

Talley is eleven today!

And what a sweet girl she is! Her birthday is timed just right to be in the middle of every holiday rush there is… but this year we are determined to make it count!

Happy birthday Tal!

11-talley-mugshot

 

brooke-and-talley-ribbons

 

with susan

 

with ellie 2

 

 

 

 

 

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Update 12-11-12

Ellie is doing so well – it is surely the Lord!

Read about another Trisomy 18 child tonight and it made me cry. She was three and went home to be with the Lord. I know that this is an ongoing process. But what is true with all of our relationships, is starkly obvious with a child who has a short life expectancy… teach us to number our days Lord.

Please pray with us that we will continue to trust in Him and the power of His might. That we would have right thinking and choose to obey Him. Love to all of you and thanking our Lord who gave us this privilege.

2 Corinthians 10:4

For the weapons of our warfare are not of the flesh, but divinely powerful for the destruction of fortresses. We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ.

12-5-12

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