Dec
01
    
Posted (Tina) in All Posts on December-1-2007


Today was a much better day.
 
Nurse Marla was taking care of Ella – – she is on our core team of nurses. I had not seen her since she returned from the Thanksgiving holiday. She enjoys taking care of Ella and it shows.
 
When Grandma and I arrived, Ella was sleeping soundly. Without saying anything, I think she felt us staring at her. All of a sudden, she opened her eyes to take a peek. When she realized that it was us, she got excited and woke up.
 
From there, we received lots of smiles and laughs. It was a fun time. Then, Nurse Marla situated Ella into Grandma’s arms.
 
I decided to share my concerns with Marla. She has great bedside manner. She listened and was very supportive. It was a refreshing change from the prior day.
 
In the corner of my eye, I noticed that Dr. Kays was helping the other babies that were on ECMO in his Saturday attire (jeans and a Gator shirt). When I found an opportune time, I went over and asked him if I could have 5 minutes whenever he was ready. He made sure that I knew that he was fully intending on coming over for an update, but that he was just taking care of the critically ill babies first.
 
When he came over, he let me know that he is still involved and overseeing her care. I shared some of my concerns and asked for the next steps. He wants to watch for her stability on CPAP and if she does well, look at turning down the CPAP pressure to 5 on Monday (it is at 6 right now). He noted that he is not interested in “sprinting” this time (some CPAP, some nose cannula). He wants to take his time truly weening her down to a presuure of 3 on the CPAP with stability for several days before he will consider the nose cannula. But it will be a straight switch.
 
Now that she has had the nissen surgery, along with the 5 days of steroids post-op and extra diuretics (keeping fluids off of her), he wants to see if she will make slow progress forward as anticipated. If we begin to ween and she shows signs of distress at any point, then he will want to order a CT scan to look at her lungs, pleural cavity and superior vena cava to better assess what is happening.
 
As you might imagine, that was music to my ears. I just wanted a plan so we can know the next steps in her care. Plus, it was reassuring to know that he not walking out of the picture (he has been so busy with other critically ill babies that it was starting to feel that way).
 
On another note, he did mention that it is highly likely that she will need to be admitted to the hospital over the first 2 years after initial release (she does not have the headroom like a healthy baby and the slightest thing can send her back). This stirred up lots of things for me that I have already started to be concerned about lately.
 
We do not have a good network of doctors and specialists back in Denver. I can’t imagine being home for a few months and her needing to be re-admitted to the hospital…especially in a place where they do not specialize in CDH and a place where I do not have the confidence that she would be getting the best care (let’s not forget that in Denver they gave her a 20% chance of survival with no guarantee on the quality of life). Also, the reason that we came all the way out here is because it is hands down the best place for a CDH baby to be born and cared for under Dr. Kays.
 
He mentioned all the different specialists that we would need along with a strong pediatrician. I asked if he had any recommendations in Denver, but he doesn’t. He mentioned that if we were staying local, that he has the name of an excellent female pediatrician. She is smart, he respects her and even better, she has her own child with CDH. Wow, that is appealing!
 
Ella Renae is such a treasured gift from above. We just want to make the right decisions for her. I know that the Lord will guide us and provide peace in those decisions that lie ahead. As with everything else, we just need to trust in Him. As Dr. Stanley always says, “Obey God and leave all the consequences to Him. That is living life at its best”.
 
Thank you for the thoughts and prayers. I truly felt covered in prayer as I walked into the NICU to face another day.
 
Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.

 



Steven and Terri Trainer on December 2nd, 2007 at 12:39 am #

My dearest friend, I’m thrilled that you had a better day! I could hear the frustration and anxiety in yesterday’s posting, and hoped that things would get better today. We’ll continue to pray for God’s direction on Ella’s long term care. He will guide you sister, as He always does. And, being the ultimate Father, he totally understands your concerns and desire for the best care for your darling little one. You hang in there. Hugs – T

Jan Costas on December 2nd, 2007 at 2:27 am #

I’m so glad you were able to talke with Dr. Kays. Lots of things to consider. I trust that the Lord will guide your steps as you ponder and evaluate all this. I pray that He set a lamp before your feet and lead you in the darkness. I’m so glad you’re on the “forward progress road” again. jan

Heidi Anderson on December 2nd, 2007 at 6:10 am #

What a journey you are on… sweet Ella is holding strong and giving you all moments of joy amidst a flood of uncertainty.

We are continuing to pray for her and for you. We had a small experience with being in a NICU and I can empathize with some of your words. Please know that we are praying for you all!

JoAnna King and Kids on December 2nd, 2007 at 7:33 am #

The kids were excited that you were able to hold Ella again. They especially enjoyed seeing Ella’s Grandma there with you. We love you all and are continuing to pray for healing and wisdom.

Tammy on December 2nd, 2007 at 10:53 am #

I was happy to read that the day was better and your feeling more support with straight forward answers. It seems that in a critical care situation it’s easier to know the facts, as difficult as they may be, because then your mind isn’t running wild, and you have something concrete with which to work.
Sweet Ella looks wonderful, what a true joy.
God Bless

Roxie (Adrienne's friend) on December 2nd, 2007 at 12:27 pm #

Sweet Tina, I’m soo glad that you had a better day. Ella looks absolutely wonderful! She is certainly enjoying her G-Ma isn’t she. ๐Ÿ™‚ Our hearts are with you and praying for you as you and Josh prepare for the future.
Much love, Roxie

Gloria & Red Jacobsen on December 2nd, 2007 at 1:17 pm #

We’re so glad you were able to talk to Dr. Kays and get the support and information you needed. WE love the pictures of Ella,she is such a reponsive smart little baby the way she looks directly at you and her Grammie. Her smiles and grins show such personality!! She’s a darling! Today of course more prayers going your way! as always, Gloria & Red

Joel Snyder on December 2nd, 2007 at 2:14 pm #

Ella, You look like you are having a great time with your Mom and Grandma. T&J glad to see you start to get the answers you need for Ella’s care. Enjoy the time with Grandma. Josh hope your Grandma is doing better. I will check on our “Gator Girl”tommorrow. Love, Grandpa!!!!!!

g

Char Snyder Jordan on December 2nd, 2007 at 8:22 pm #

What a sweet picture of Ella and Mary. Oh how the Lord can work his magic in our lives. We love you all and are praying that the difficulties will lessen with time. We are rooting and cheering you on. We can feel the love coming through the computer and pictures when we see the photos daily. We are glad you sought out some trusted individuals to bolster your feeling and had a chat with Dr. Kays. He must be some special individual. We love him for his efforts to our family. You and your little family are always in our prayers. Your birthday is on the 15th of December Tina. I can’t think of a better birthday gift than to see more progress for Ella. We will petition the Lord toward that goal. We love you all. Aunt Char and JIM

Brantley Family on December 2nd, 2007 at 10:26 pm #

That is a really adorable picture of Ella! Glad to see that Sunday was a better day. We will pray that God gives you guys the answers you need for Ella’s future care. Please let us know if there is anything that we can do. We pray every day for your family.

Clay, Julie, and Jordan

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