Ellie Louise

Ellie Louise’s Blog

on September 27, 2012

I am repurposing my old Sensible Mom blog and will be using it to update everyone about Ellie Louise’s progress. If you were subscribed to Sensible Mom via email and do not wish to get information on Ellie, please unsubscribe via clicking on the “manage” button on the sidebar.

Ellie was diagnosed with Trisomy 18 in utero. It is a serious genetic disorder. We have been going to MUSC for doctors appointments with the intention of delivering here in Charleston.
Last Wednesday I came for my 37 week appointment and Ellie’s heart rate was dropping during the ultrasound. We decided that delivery was the best option since I was already in Charleston. She was not tolerating labor well and her heart rate dropped, so we did an emergency C-Section.  I had massive amounts of excess amniotic fluid which was keeping the contractions I was having from progressing during the labor. They drew off 1800 cc of fluid before the induction and there was an additional 1800 cc of fluid that came out during the C-Section.
She is beautiful and was born at 6:50 pm on Sept 19th, weighing 4 lbs 7 oz. We named her Ellie Louise. Ellie means “light” and Louise is a dear family friend’s name that we wanted to honor.
She has been in the NICU since Wednesday and has been on the vent. She actually is breathing really well and could have come off, but as she is had surgery yesterday to correct two problems:

 

1) tracheo esophageal fistula – There is an opening where there should not be between the trachea and the esophagus. The trachea should only be connected to the lungs… and the esophagus should only be connected to the stomach. They needed to close up this hole so that her stomach contents do not get into her lungs.
2) esophageal atresia – The esophagus ended in a blind pouch instead of connecting to the stomach. So she had no way to receive nutrition and everything that goes into her mouth would come back up. That is why I had so much excess amniotic fluid… she couldn’t swallow it. The goal was to connect the esophagus to the stomach so that she can get nutrition through to her stomach through her esophagus. They put in an NG tube.
The surgery went very well and now we are waiting as Ellie recovers over the next few days. Our biggest prayer requests now are that her blood pressure would continue to be stable, that the swallow study would come back fine on Monday and that they would be able to begin to feed her my breast milk via the ng tube in the next week or so. Also that her respiratory system would work well and that she would be able to come off the vent and breathe on her own.
We know that Ellie is in His Hands and that He loves her even more than we do. Please pray for Ellie and for us when the Lord brings it to your mind. I will keep everyone updated this blog and Facebook.. and if you have a specific question I will do my best to get back to you as soon as possible.
We so appreciate all of our friends and church family as well as our brothers and sisters in Christ throughout the world who are lifting Ellie and our family up in prayer. We are so thankful for your kindness and support.
Psalm 121
I lift up my eyes to the hills – where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip – He who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you – the Lord is your shade at your right hand; the sun will not harm you by day nor the moon by night. The Lord will keep you from all harm – He will watch over your life. The Lord will watch over your coming and going now and forever more.
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13 responses to “Ellie Louise’s Blog

  1. Stephanie says:

    Love Char and praying

  2. Monica says:

    Hey Charlotte,

    Thanks so much for the update and details, it is a blessing to know specifically how to pray! I am remembering our evening of “light” and lifting little Ellie up to the Father of Lights! Thinking of you often!

    Love you,
    Monica

  3. Lisa says:

    My absolutely favorite Psalm is 121! Keeping all of you in our thoughts and prayers. Know that God has this delicate beautiful child in his hands. She is well loved.

  4. Jan says:

    Charlotte, please know we will be praying for precious Ellie and your family as you walk through these difficult days. Our God is faithful in all things!

  5. Peggy Oram says:

    We are praying for you guys. Love you Char.

  6. Brandi says:

    Char, I am just now finding out about this. I am thankful I still have Sensible Mom on my reader. I am so sorry to hear about this trial yet so grateful that Little Ellie Louise is doing so well. You have my prayers, friend. Love, Brandi

  7. Joy says:

    Fellow homeschooling family here in North Charleston, praying and rejoicing alongside you all! Heard about your family via LCHEA/Trena Balakrishnan. Appreciate you taking the time to keep us updated to pray for little Ellie specifically. Also, I have a friend whose youngest son has the same Trisomy 18. They were told he would never walk, run, talk and more, but we know God is much bigger than doctors’ predictions and their son is a walking miracle, now about 18, I think.
    Thanks for your example to all of God’s mercy and grace in the midst of a trial.

  8. Jillian says:

    We are praying for you and send our love!
    -gary & jillian

  9. Jen says:

    Hi Everyone,
    We are so glad Ellie is home. We are sending our love and prays from Mass.

    Love Jen, Will and George

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