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

Today was a day forward for Ella with small steps in the right direction.

When the surgical team did rounds, they determined that no major changes were needed in Ella’s care. Dr. Paddock was talking and Ella rolled over and gave her a grin – – that showed that Ella was starting to feel better.

Ella was stable on 1 liter of oxygen for the past few days, so Dr. Paddock wrote an order to decrease her oxygen to 500ml, which is her baseline.

Fortunately, Ella took to the change like a champ. She was easily able to maintain throughout the day except for two times. Both of those times, Ella must have been experiencing some type of pain (my guess is gas/tummy trouble). During these 2 episodes, we simply had to increase the oxygen to 1 liter for a short period time, but did not require blow-by oxygen. This means that some of the fluid must be coming off.

Blood Urea Nitrogen (BUN) is a waste product produced in the liver and excreted by the kidneys. Upon admission to the hospital, her blood work showed a BUN of 12. We will be here in the hospital until the BUN is 20 or higher (the higher the number the more dry). All the times that I can remember, Ella was doing well when her BUN was at least 24.

Although her urine output is high, she is still not outputting enough. Please pray that she will dry out. This is the only way that we will get home.

Ella had one full day of her new formula, Pregestimil. Throughout the day, she was having tummy/gas pain. However, she did stool tonight which was a positive sign that this new formula is definitely easier for her to digest. I think it is good that we are switching the food out and also waiting for her to get “dry” at the same time. This way, if we can get her BUN high enough, it should not be because of the food.

Most likely, Dr. Kays will re-assess her on Monday and look to take her labs either that day or shortly thereafter.

Ella’s grandpa showed up tonight and had the privilege of holding her for the first time. One thing is for sure, I am thinking that Ella got her blue eyes from her grandpa. They sure look cute together.

Please pray that Ella will continue to tolerate her new food with limited gas pain, that she will pee like she never has before (we want her dried out) and that she won’t have too much pain from teething. For Dad, that he can continue to make progress on his work project this weekend and that Mom will catch as much shut-eye as possible while hanging out with the Bun at the hospital (I’ve been sleeping in her room overnight too).

As always, thanks for thinking of us and joining us on this journey.

laura blackwell on February 3rd, 2008 at 12:12 am #

You’re in my thoughts and prayers.

Jan Gray on February 3rd, 2008 at 3:15 am #

Ella is in our prayers. May God heal her and continue to give all of you strength.
In Christ’s love,

Amy Sabatino on February 3rd, 2008 at 7:26 am #

Tina, Josh and Ella
I have had you three in my thoughts and prayers. I know that you all miss the NICU, but as you know the PICU has some good aspects. After being in both I see no difference in the love and care of the nurses. Both sets of nurses love Roger and tell me that their unit is better than the other. It is kind of funny. I pray that your experiances here will be just as good as the NICU. I also pray for Ella to have a speedy recovery and will be able to go home for good. Love amy

Debbie Bennett on February 3rd, 2008 at 7:28 am #

My thoughts and prayers are with you guys. She sure seems to love her grandpa. Hope you get some rest. God Bless.

Tracy Mitchell on February 3rd, 2008 at 8:12 am #

You three are always on my mind. Praying for the right medicines to be found so Ella doesn’t have to be re-admitted and that Ella will continue to grow stronger! Find rest in HIM.
Tracy Mitchell ~ TN

Williamsburg on February 3rd, 2008 at 8:24 am #

Welcome to Gainesville, Grandpa – so glad you made it safely. Give all of the West family big Colorado hugs from us. XOXOXO

Kristyn on February 3rd, 2008 at 8:34 am #

I have been reading Ella’s story for awhile now (I still need to catch up with parts of it!). Our second daughter was born with an undiagnosed R-CDH 2.5 years ago and is doing great. We send our prayers for Ella that she is able to get back home soon and that she continues to get better and grow stronger everyday.
Kristyn & family–Iowa
Leah 8.11.05 R-CDH

Lisa Daunora on February 3rd, 2008 at 9:53 am #

I am crying as I look at the beautiful pictures of your little girl. Adrienne forwarded me your blog sight. I just want you to know that I am praying for you all right now and will continue.

The Rainey Family on February 3rd, 2008 at 10:15 am #

We are continuing to pray for you all!! Enjoy the visit with Grandpa!

Char and Jim Jordan on February 3rd, 2008 at 2:13 pm #

What a pleasure to see my brother holding his grandchild. It warms me to see the family together. We are praying for a wonderful visit. We know how difficult it will be to leave such a blessed family. We are so glad to see you all. LOL Jim and Char

The Lizotte Family on February 3rd, 2008 at 4:07 pm #

Welcome to Florida Grandpa Snyder! Those are the warmest pictures. Thank you for sharing. You can tell that Ella is really a ham for company what an attention getter!!! Please know you are still in our prayers and in our hearts.

Kara on February 3rd, 2008 at 4:21 pm #

Yea! It’s Uncle George! I love that guy. Give him giant hugs and kisses for us please.

Tim and Tammy Dygert (Autumn's parents) on February 3rd, 2008 at 7:08 pm #

Hi guys. We’ve had a rare moment of quiet and decided to check in with you. We are so sorry to hear about your challenges since leaving the NICU. You are certainly in our thoughts. We actually made a visit to the pediatric after-hours clinic the other night with a small scare with Autumn. All is well, but if we had known you were at Shands, we would have stopped by. We’ll be at the neonatology clinic tomorrow. If time permits and if it’s appropriate for you, we’ll try and find you.

Carl and Cathie Firestone on February 3rd, 2008 at 7:10 pm #

Carl and I just got home from a business trip…I am just catching up on Ella…I’m so sorry you have all had a rough couple of days. I am so thankful that you decided to stay in Gainesville for awhile and not head straight home for Colorado. Our Lord does indeed have everything covered! We are praying for a short hospital stay and strength for all 3 of you…rest when you can and know that God will sustain you when you can’t. With Love, Cathie Firestone

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