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.