Posted (Tina) in All Posts on August-28-2007

Ella sustained her stats throughout the day. When I went to visit her, her blood gases and saturations were good.

Also, they began feeding her the small amounts of my milk throughout the day and she tolerated it just fine. Keep in mind that since Ella has not had to digest any food up to this point, her intestines are at risk of not working. In other words, it is almost like they can atrophy because they are not being used. So the purpose of supplying the smallest amount of my milk was to entice the cells in her intestines that there will be real food coming at some point! In any case, it is a good sign that she tolerated it well.

Visiting her today and tonight was rough. We did have several concerns and the nursing staff was not effective in answering our questions. Unfortunately, that tends to make things worse and makes us wish that we had a direct line to Dr. Kays, so he could alleviate our concerns.

Even though Ella’s stats are good, her swelling has not reduced. So far, it doesn’t seem like the invasive SVC procedure has made much of a difference. This means that there is a good chance that the procedure will need to be repeated. In addition, her head swelling was much worse tonight versus 24 hours ago.

On top of all of that, Ella just seemed very out of it. We are not sure if it is because she was just real tired or if it was an indication of anything. On Monday morning before the procedure, you would talk to her and she would look around and respond to your voice. She hasn’t been doing that since the procedure yesterday.

When you see these types of side effects and the SVC procedure is not something that this hospital or staff has a lot of expereince treating, it starts to get the best of you!

Honestly, it is probably nothing. Our perception is that she has worsened, but I think we are just nervous about everything that she has been enduring.

If you would, please join us in praying for our little girl: that we will see fluid reduction from her chest tubes, her overall swelling would reduce significantly(especially her head), and her superior vena cava issue would resolve itself. Also, that tomorrow will be a better day for her parents!

As we prepare for a night’s sleep, we rest in His promise:

Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thanks for all the support from everyone. Good night!

The Laz Fam! on August 28th, 2007 at 10:01 pm #

She’s so beautiful! We join you in praying that the issues she’s facing would resolve quickly, and also that you will not let your worries take your eyes off your Savior. We also thank the Lord for the devotion and caring of all the nurses, and ask Him that He would increase their gift of communication and encouragement for worried parents. Thank You, Father, that we can bring all requests to You!
We love you all!

Char Snyder Jordan on August 28th, 2007 at 10:01 pm #

It is such a burden to be a good parent. Once you have a child whichever way God gives it to you, your life is irrevocably changed forever. You never see life quite the way you used to se it. It is by faith that we must walk in this life. You are a wonderful example to everyone else Tina. Patience now and stay on your knees. All our love and respect to you. Love, Aunt Char and Jim

kristin on August 28th, 2007 at 10:27 pm #


Remember fear and faith can’t occupy the same breath. Remember that YOU are human. Worry and fear happens. You are a wonderful mother. Ella is taking in your milk. She is taking all these awesome steps at getting better. Remember that even all the best experience does not always translate into the words we want to hear or change the perception of our thoughts/sight/hearing etc. Trust them. They are a team that Dr. Kayehas on his team. You and Josh have a direct line to God. He hears you. Supernatural and human effort are all happening. We love you. We are here to hold you up! We love you and respect all of your decisions. We love you all. Kristin

Laura Blackwell on August 29th, 2007 at 12:59 am #

Did you sing this song in your youth group? “In my life, Lord, be gloried, be gloried, in my life, Lord, be glorified today.” It’s been in head all day and I sing it with Ella’s name in it instead of the word “my.” Lord, glorify yourself by an amazing healing. Thank you that Ella is stable and calm, lay your hand on her vein and cause it to flow just as you designed. Give her Mommy and Daddy a peace that surpasses understanding.

Joel Snyder on August 29th, 2007 at 1:00 am #

Tina and Josh, Sorry I didn’t post earlier but I got late getting ready for work. I understand your frustration and can only say be patient. I hope Ella responds better on her fluid and SCV procedure. Remember you both are my heroes and I can’t believe how well you are holding up. I Love you all. Grandpa

Lisa (Ms. Texas) on August 29th, 2007 at 7:16 am #

I can’t even imagine the heart wrenching stress! I Know you will put it in the hand of GOD. Ella has been a champ through all of her tests. Please lord have mercy on your little angel Ella. Please strenghten her body and allow the SCV procedure to heal and provide proper fluid elimination for her body. Please bless her parents with good news today! Amen.

Melissa Morris on August 29th, 2007 at 8:34 am #

She is so sweet and really looks great and peaceful. You both need to be gentle with yourselves. Like people have said… you are human and what you are going through isn’t easy. You are in the middle of the storm and you continue to praise HIM!! Ella is taking baby steps towards recovery and I continue to praise God for what he is doing. You both are such an inspiration to many. I’m sure you must feel exhausted and worn down but this is when He will carry you. This is when you will look back and see only one set of footprints. Rest in the fact that he is carrying you and holding you and your beautiful baby girl, Ella.
Our God is a BIG GOD and I just pray that his will would be done in and through Ella.
God we pray for a quick recovery for Ella and patience, comfort and strength for Josh and Tina. Continue to guide Dr. Kays and his staff. Please keep the fluid draining and reduce the swelling in her head. This is a lot for her little body to be enduring and she is such a fighter. Please ease her fight. Strengthen her and her parents. I pray that everyone was able to get rest last night and that today would bring answers and steps towards recovery. Please continue to hold Ella in your hands and ease her mommy and daddy’s anxiety.
Give them peace and comfort them.
Today is a new day!
Day 37… Go Ella, GO!!!!
Love, Melissa

Post a comment

Name:  (required)
Email:  (required)