Posted (Tina) in All Posts on October-2-2008

Ella had an okay day. I think she was better yesterday.

Overnight, she seemed more comfortable. Although I still was up several times, it was a little easier. When I would get up to attend to her, she was easy to console whereas the prior weeks has been lots of fussy behavior.

Her blood pressures were low intermittently and became really low in the afternoon and into the evening. They think it is due to the increased dose of Captopril that started last night. The nurses will definitely be monitoring her blood pressure closely. They might even need to adjust her Captopril dose overnight, since her latest blood pressure was 65/33.

They increased her formula to 24k/cal of EleCare (pre-digested food). She has been on a continuous feed at a rate of 30cc/hour. So far, she seems to be tolerating it just fine. We will see how she does overnight.

Besides food, there were no med changes today. They are just monitoring her clinically to see the effects of the increased captopril and watching her fluid status.

We think she is still wet, mostly based on her increased secretions and oxygen requirement of 1.5 liters. I just have that “mom sense” that she is slowly creeping in the wrong direction. I’m hoping that I’m not right.

We feel like she would be requiring less oxygen if she became more dry. There is debate among the docs as far as whether or not we should wait and see with the diuretic or give her a dose of Bumex. We will be discussing it during rounds tomorrow morning.

If everything stays on track and she continues to improve each day, they are thinking that discharge could be later next week.

In the meantime, we pray for Ella’s health and comfort. She is such a good baby. It is sometimes hard to reflect back and think about how much she has been through in her short 14 months of life. Our heart’s desire is to get her to a place whereby she can remain stable and we can float through the holiday season. We would really love to enjoy them with Ella in our home.

We praise Him for our nanny. We pray for her and her important role in Ella’s life, that she would continue to be a witness of your love.

This Psalm just stood out to me this morning. Many times we can feel forgotten and wrestle with thoughts about God and His intention for the circumstances in our lives. We can feel like things own us and can triumph over us. But at the end, we know that He has a plan and purpose.

Psalm 13
How long, LORD? Will you forget me forever?
How long will you hide your face from me?

How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?

Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death,

and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.

But I trust in your unfailing love;
my heart rejoices in your salvation.

I will sing the LORD’s praise,
for he has been good to me.

Joyce Pineau on October 2nd, 2008 at 11:03 pm #

Tina and Josh,
I continue to pray for your family, that G-d will provide a mighty miracle for Ella. What an incredible little darling you have. When I read your posts before I go to bed, and watch her smiles in her slide shows, she sure brightens up my days. What incredible parents you are to Ella and your faith is just unshakable. I don’t know how you do it. I can’t wait to meet you all someday. I will look forward to it. Blessings, The Granny Nanny Joyce

Kelly the Nanny on October 2nd, 2008 at 11:23 pm #

Her spirit today was so sporadic, but sweet as can be. I’m interested to see the conversation the docs and mom have tomorrow–there is usually a conflict because Ella doesn’t necessarily go by the books that the doctors do.

Ephesians is my book tonight–
“Although I am less than the least of all God’s people, this grace was given to me…”
I don’t deserve for one second to be a part of your lives, or of Ella’s life, but somehow God is blessing me with the gift of being in your household (or hospital room, as it may be)–I couldn’t be more grateful or humbled, to Christ or to you three.

“For He Himself is our peace…”
What great comfort, knowing that there is no middle ground. It’s US, then it’s HIM, and there’s nothing standing in the way. No priests or vows or duties… Just God.

“Be imitators of God, therefore, as dearly loved children and live a life of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”

Just some thoughts. Praise Him.

Kelli Billman on October 3rd, 2008 at 7:44 am #

Prayers for heading in the right direction.
Kelly, looking forward to meeting you next week!

Megan on October 3rd, 2008 at 7:48 am #

Goodmorning Ella! I heard a song today by MARK SCHULTZ called He’s my son and thought of you. Even though your a daughter I think the words still apply. Have a wonderful weekend!

Joel Snyder on October 3rd, 2008 at 8:13 am #

Ella, Just woke up and took your friends Taco and Manny out for a walk and fed them breakfast. I am hoping and praying that you will keep progressing and that you can go home soon. I will be over to see you sometime today. Love,Grandpa!!!!!!!!!!

Jennifer Harris on October 3rd, 2008 at 9:17 am #

Josh/Tina-I referred to Psalms 13 on a regular basis. Know that GOD will turn this matter around and bless your family with HIS mercy and grace. We pray for Ella’s complete healing and recovery & love and strength for you. Praise the Lord!
jennifer & chelsea

Afton Hannah on October 3rd, 2008 at 10:13 pm #

Dear Ella, I have a little girl the same age as you actually you are a few weeks younger then my Jilli. We have been following you for a couple of weeks and praying that you will get stronger each day. Jillian aka Jilli was born with a heart defect so she knows some of the struggle u are going through. Tina and Josh I ran across your blog while checking about a friends baby. I decided to write and let you know how amazing you both are. Ella is a very beautiful and special child and she has wonderful parent.

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