Posted (Tina) in All Posts on September-11-2007

Ella had a stable day yesterday, so mid-day Dr. Kays made some changes.
He noted that the increased octreotide medicine did not make a difference in Ella’s chest fluid output over this past weekend. So, he decided to remove her left chest tube.
Also, Dr. Kays made a few changes on the ventilator. Ella’s oxygen was weened to 36% oxygen (remember that we started at 50%) and 32 breaths per minute (we started at 50).
These are good steps forward for Ella. She did fine initially and into the late night, but this morning the evidence of the changes were not as positive as hoped.
Ella only drained 35 out of her right chest tube and she looks a bit more swollen. Again, this is from fluid accumulation (removal of the left chest tube). Her chest x-ray this morning confirmed that fact: her left side appeared hazy.
Also, her blood gas this morning was not great, as a result of the chest tube removal, fluid accumulation and the difficulty she is having with breathing. The pO2 was fine at 121, but her cO2 was 70 (should be around 40). She will have another blood gas earlier this afternoon.
Based on the results this morning and the fact that she was not settling down for Nurse Andrea, Dr. Kays decided to let her sleep on her left side (she favors that side because she is not laying on her stronger lung and it is easier to breathe). Also, he increased her lasix medicine to 3x per day (helps reduce swelling) and turned the ventilator settings back to where we started. All of these changes in an effort to see if it will help Ella just get over the hump with this fluid issue.
If Ella’s stats do not remain stable over the next few hours and show an improvement in her cO2 level, Dr. Kays will probably be looking to place a new chest tube back in her left side.
One piece of good news from yesterday: Ella’s head gear was removed! Nurse Michelle noted that Ella’s forehead was getting skin degeneration from the blood oxygen monitor (getting too raw). So, she asked Dr. Kays if there was a point in keeping the band on her forehead. Most babies are not kept on the machine that long and since it is a relatively new technology for them and there is not a set protocol, Dr. Kays agreed that it could be removed! Thanks to Nurse Michelle for speaking up!
Last night when we visited Ella, Nurse Michelle was so sweet. She had this pink gown that she had been waiting to put on her! So, sure enough…she said it was time.
As an addition to Ella’s outfit, I received something special the other day in the mail. Tracy Mitchell, the mother of Baby Jonathan, had sent us a card along with a hand-knitted hat she made especially for Ella. That touched our hearts so much.
Please pray for Ella’s fluid issue to resolve. She really needs to reach this milestone before she can take on others.
Also, please pray for our strength to remain strong and for us to be filled with heavenly peace that only God can provide.

Loren on September 11th, 2007 at 8:17 am #

Stay strong Ella!

Joan Odell on September 11th, 2007 at 8:43 am #

Father, touch Ella with your special healing touch and move her over this bump so she can continue to heal. Touch Tina and Josh and give them strength, encouragement and peace. This precious baby and her parents are so important to so many of us. Thank you for the milestones you have have taken Ella and her parents through and the progressive healing you have blessed Ella with. We love you Father and honor you. In Christ’s love – Amen. Steve and Joan

Laura Marold on September 11th, 2007 at 9:01 am #

Catching up on Ella news this morning. I
was on vacation in Yellowstone(no cell coverage–only land lines) and am so happy about all the good news. She is SUCH a pretty little thing! Love, Laura M.

Roberts Family on September 11th, 2007 at 11:16 am #

praying for God’s healing and for the fluid issue to be resolved. She looks darling in pink. Also praying for your strength and peace. Thanks so much for the updates.

Laura Blackwell on September 11th, 2007 at 11:46 am #

Thanks for the update. We are definately praying about the fluid issues. I hope you have a dog. =) My 3 year old keeps praying that Ella can go home and be with her “Mommy and Daddy and dog.” There must be something wonderful about CO in the Fall. My college roommate was from CO. She would get so homesick in the Fall. Covering you all in prayers.

Auntie Shanon on September 11th, 2007 at 12:33 pm #

Sweet Ella, we are praying today for you to drain, drain, drain. Go, Ella, No FLUID! I love the outfit, sheet and especially hat (how incredibly touching) – it is so bright and must make her feel better. Auntie Tina and Uncle Josh, we let Claire open her b-day gift early (she has strep throat and a high fever so we thought it would be a nice treat). She LOVES her new baby and has named her Ella — too cute!

Hugs and Kisses

The Eusey clan.

Joel Snyder on September 11th, 2007 at 2:53 pm #

Ella, Please keep up the good fight for fluid reduction. You look so cute in your new outfit and hat. Tina and Josh hope things get better for you guys. I am praying for all of you. Love, Grandpa!!!!!!!!!!!

Char Snyder Jordan on September 11th, 2007 at 2:58 pm #

That pink gingham blanket and the wonderful nightgown look so sweet on Ella. One of our neighbors heard about Sweet Ella. She knit a beautiful sweater(pink baby Jacket) for Ella’s trip home. I need an address: Either where you are in Gainesville or in Denver. We are in full prayer for continued success. Please take care in knowing it will be done in God’s time. Very frustrating for us humans. We pray for her fluids to consistently reduce and progress towards home be made. Keep the Faith. Love, Aunt Char and Jim

Williamsburg on September 11th, 2007 at 4:45 pm #

You are so beautiful it makes me want to cry, sweet Princess. Lord, I echo the prayers that have been posted here today; keep Tina and Josh safe in your arms and close to your heart while they continue to walk this journey with your precious daughter. All our love. XOXOXO

Angie on September 11th, 2007 at 8:05 pm #

Oh so pretty in pink! Now we can see much more of her sweet face with the cerebral oximeter off! 🙂 By the way I can’t believe it’s already been 7 weeks ~WOW~! I pray her fluids will start to decrease again so we can keep taking those steps forward. You guys are always in my thoughts & prayers – hang in there! Sweet dreams baby Ella – I’ll see you tomorrow! ~Nurse Angie

Brendan on September 11th, 2007 at 8:14 pm #

Ella is looking fantastic. Praise the LORD! Stay strong you two. You know Who you are leaning on. Don’t forget that.

kristin on September 11th, 2007 at 8:58 pm #

Sweet Ella and all her monkeys!!! They are standing guard for you and to make sure you all remember to giggle and dance even when times are tough. You will love King Louie in the Jungle Book!! Sorry I have missed you over the last couple of days. You, your Mom and your Dad are never far from my thoughts and prayers. Keep on growing sweetie! You are growing stronger and healthier every day. Tina and Josh, the Trinity is holding and sheltering you all.

We love you! Kristin, Marques & Lauren

Elizabeth on September 12th, 2007 at 7:27 am #

Cathy Firestone shared your story with me today and gave me this site. As a CDH mom too, I know exactly what you guys are going through. Caleb had a fluid retention problem as well. He is now almost 7 years old and living a very happy, full life. We are living proof of God’s power and are believing for total healing for your little miracle baby too! We live in Jax, FL so we are not very far from G-ville. Let us know if we can help in any way during this difficult time. Your faith is inspiring and God’s grace will see you through! God bless- Baby Ella is in our prayers.

John & Estela Williams on September 12th, 2007 at 8:26 am #

Good Afternoon… Ella looks so beautiful in her pink dress. Got her upates this morning and I am so pleased to know how well she is doing and looking. Thank you God.

Lisa T. on September 12th, 2007 at 8:57 am #

Look at that cheering section she has of stuffed animals! And her hat is absolutely precious! Happy 7 weeks, baby Ella!

Melissa Morris on September 12th, 2007 at 9:21 am #

I just noticed all of Ella’s animals with their own little bows. So cute!!
Stay strong, Ella… stay strong!!
You look great. I love your new pink gown and beautiful knitted hat. You just look stunning.
Josh and Tina, I can only imagine how you both are feeling. Hang in there and lean on our Almighty God. He is with all of you, always. Sometimes you may wonder – Where are you Lord? It’s O.K. – cry out to him, he hears you. When you look back through all of your posts you can see where God was. He has been with you and he continues to be there. He never leaves you so, lean on Him. Rest in the knowledge that He is with you. Keep the faith!!
That song that you mentioned in one of your earlier posts by Casting Crowns (I Will Praise You In This Storm) is so fitting for this season of your lives.

Lyrics from the song…
I was sure by now God,
That You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say, “amen”….
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

The whole song is awesome but those are some lyrics that really hit me.

Know that God’s timing is perfect and I pray that His will will be done in and through the beautiful West family.
I love you guys and think about and pray for you all of the time, just as so many people around the world are doing.
Ella has come so far and she is a fighter. I continue to pray for her fluid reduction so she can continue to make progress.
Hold tight Josh and Tina!! He will not let you down now. He continues to hold all of you in His hands.

Father God, please fill Josh and Tina with strength that comes only from you and peace Lord. Thank you Lord for the medical staff that you placed Josh, Tina and Ella with. We praise you that at that perfect moment they each find different things that need to be changed or corrected so that Ella is able to improve. She is getting stronger each day and we pray that the fluid in her body would drain and that she would be able to find comfort so she can continue to heal. Lord, hear our prayers and just make your presence known today.
Love, Melissa

Post a comment

Name:  (required)
Email:  (required)