Posted (jooosh) in All Posts on November-21-2008

Ella was up half a dozen times last night, and her “numbers” were not that great. Her heart rate was in the 140s (normally 115ish) and her O2 saturation was in the mid 90s (normally 98-100) while in a deep sleep. At about 9:15 this morning, her heart rate was hovering around 180 (normally 150), even peaked around 190, and she was saturating in the upper 80’s (normally 95).

Her clinical behavior wasn’t indicating that she was in any pain, and she wasn’t overly fussy, but these numbers did not lie: Ella was not doing well.

I increased her O2 up to 1.5 liters and called her pulmonologist. It is so phenomenal to have access to this amazing doctor directly, and he always affirms how much he wants to help and be available.

After talking through Ella’s situation with him, he recommended that we give her a one time dose of the Bumex and then give Ella the Aldactizide twice a day, every day. I’m so glad we had the Bumex on hand. This is the incredibly strong loop diuretic that Ella was on for so long. We kept it so we could use it as a big gun to help us in these situations.

And as it turned out, it did. After administering the dose of Bumex, within 2 hours Ella filled her diaper up, so much so that it leaked out onto Kelly while she was holding her! (sorry Kelly)

Obviously Ella has excess fluid on board so we were glad to see this kind of output. She had another significant diaper a couple hours later as well.

The Bumex seemed to help because as of this evening, we’ve been able to turn her O2 down to a liter and her saturations are keeping in the upper 90s. Her heart rate has come down as well….Praise God.

We’re not out of the woods yet with this one, and we may have to give another dose of Bumex, but at least we can see that she’s going in the right direction.

Tina came home from her business trip tonight. It’s so great having her back. She’s pretty wiped out and is asleep next to me as I type this.

I have a couple prayer requests. Please pray that we can get Ella’s fluid balanced and she’ll start to dry out and feel better. It’s been very challenging to find the right mix of meds based on her current food intake, but I hope we figure it out soon so we don’t have to keep going through episodes like this morning.

My other prayer request is for the Bassett family. This family found us through Ella’s blog and shared that they were expecting twins. The heavy news is that one of the twins is a CDH baby. We referred them to Dr. Kays and today Jacy delivered baby Olivia and Mason via c-section at Shands. You can read about their journey here.

While we’re filled with joy for these precious children, our hearts are heavy for their journey ahead. It is such a roller coaster of emotions, but we know that through it all, God is in control and He holds both of these precious children in His almighty hands.

Heavenly Father…Thank you for the gift of life that is found in Olivia and Mason. We specifically lift Olivia up to you Lord. Please keep her stable, and let her lungs grow strong. I ask that your peace wash over Doug, Jacy, and their entire family. Draw them close to you during this difficult time. Give Dr. Kays wisdom and discernment for the next steps he should take. May your Grace and Mercy be with this family and may your love shine through to all who come in contact with them. Bless them Lord. In Jesus Holy name. Amen.

Julie Kirk on November 22nd, 2008 at 1:42 am #

i just looked at the Bassett’s blog. It was so touching to see Dr. Kays and know the hope ahead for that little girl with the blessing of such a Dr. Also for them to be able to look at Ella and see the power of prayer and what hope looks like.
love, hugs and kisses to all of you.

Joel Snyder on November 22nd, 2008 at 7:43 am #

Ella, Sorry to hear that you had a rough morning but glad to hear that Dad,Kelly, and most of all the Dr. came to the rescue. I am praying that you can once again start back on track with steady progress forward. I know you will be happy to see your Mom and I know she is really happy to be home with you. I will check on you later. Love,Grandpa!!!!!!!!!!

Lisa T on November 22nd, 2008 at 10:09 am #

Tina, it was great seeing you at Brainstorming this week! It must have been hard to be away even for a couple of days! Ella is strong like bull, though, and cute as a button. Love her new pigtail ‘do. I’m glad to read that she’s still powering through this journey with the same gusto as ever.

Felix on November 22nd, 2008 at 10:34 am #

Ella, we hope you are feeing better. We have you, mom & dad, in our prayers.

Keep on smiling! We love your smile!

Doug Bassett on November 22nd, 2008 at 12:39 pm #

Thank you so much for sharing your story with us. We read about Ella everyday and pray for her as well. Thank you also for giving the NICU a heads up about Olivia. It was such a comfort that the nurses already knew Olivia.

Liz & Shane Nelson on November 22nd, 2008 at 4:18 pm #

Let me introduce myself my name is Liz and my husbands name is Shane. We had our baby girl on October 22nd. she was diagnosed with
LCDH on June 4th in utero. I found your blog on Mason and Olivias blog. I started to read your story. You have precious Warrior Princess. Ella’s smile is so sweet. I hope she feels better.
Here is our blog if you are interested in reading our story.
Liz and Shane

Chambers Family on November 22nd, 2008 at 5:07 pm #

I was reading about Olivia today and couldn’t remember when Ella went on ECMO. So happy to hear that she was able to perk up!

Jim and Char Jordan on November 22nd, 2008 at 7:21 pm #

We are so very Thankful for all that has happened this year with Ella and your little family. I believe that everything that can be done for Ella is being done for her and all the children that follow her path. What a pioneering adventure. Be this adventure dangerous and trying on all concerned. I know that you have been chosen to use the experiences with Ella for the knowledge and support of other babies and their families that will be initially devastated at the news about CDH.We continually pray for all of you. We love you and miss you on the beginning of the holiday season. We pray that our family will be together, all of us on Thanksgiving someday soon.

Post a comment

Name:  (required)
Email:  (required)