Posted (Tina) in All Posts on November-30-2007

Ella had a good day. There were no changes in her care. She is still on CPAP at 45% oxygen with a CPAP of 6.
There was peace of mind because Nurse Angie was watching Ella. Although the NICU was busy today, Nurse Angie is one of the best at taking care of Ella. More than anything, it is great because she is just so sweet and cares so much. You just feel it.
I was able to hold Ella for about 1.5 hours today which was nice. I have missed being able to hold her.
The rest of the time, Grandma and I took turns talking to her. We had a good time hanging out with the Bun.
I noticed last night that Ella seemed congested and it was not any better today. She will cough and it sounds like there are a lot of secretions in her airway. A few times today, she was clearly struggling to breathe. I can tell because she gets that frightened look on her face any time that her breathing becomes compromised.
I tried articulating my concerns to the nurse practitioner. However, I was told that this is a normal thing for Ella to experience based on her recent extubation. This may be correct, however it made me feel as if my input as Ella’s mom was completely discounted. All I know is that Ella has been extubated before and yet, I have never seen this type of cough.
More than anything, I wanted to feel heard and to know that since it was a concern of mine, they would watch it closely. It was really frustrating to feel like I was not being heard and that my opinions were completely discounted.
I asked the nurse practitioner about the plan for Ella over the coming days. I was never given a direct answer. Since we have been here so long and Ella’s case is not textbook, I am looking to chart her next milestone. This is important to me and I feel very frustrated that I cannot get a clear answer from the NICU staff.
At this point, Dr. Kays has started to step away from making decisions on her every day care, since most of the surgical work on her is complete. This leaves most of the day-to-day decisions to be made solely by the NICU staff. And it is tough when you a) don’t agree with the approach and/or b) can’t seem to get a direct answer.
Once the practitioner had left, I felt the rise of frustration make it to the surface and I broke out in tears. This experience is so tough and it makes all the difference in the world when you feel like your opinion matters, when you feel like they truly want to take the time to figure out what is best for Ella, when they make the extra effort to give Ella a core nurse assignment, etc. Since I have not felt the love the past 2 days in this regard, I think it just got the best of me and I needed a good cry.
Then, I went to leave the NICU and asked for a parking pass. They were not able to provide me with one.
It just felt like one of those days where every time I encountered anything to do with the NICU, it was disappointing to me.
Finally, we were given a visit by the social worker. She comes around periodically to check in on families. This time, she came to talk about the blog. Somehow, the staff at Shands heard about our blog and came with concerns over privacy. She wanted to know if we had received permission to discuss other babies on our blog, such as Par and Jonathan. I assured her that we had received verbal consent. And although we have received specific consent from these parents because we know them, she advised that it would be the best to only discuss Ella. I’ll be honest, I understood why they have to legally come tell me that information, but nonetheless, it was a bit discouraging (Par’s parents were approached too).
Since we have specific consent, here is the latest update. Par was moved to the NICU 2 today (such a blessing), so Ella will be missing him! We have not talked to Jasmine since Jonathan’s surgery. Unfortunately, Jonathan does not have a blog, so we will just need to ask that you continue to lift him up in prayer.
Once again, I am reminded that we came to Gainesville for Dr. Kays, not the NICU. And that I am so thankful for the other parents we have met on this journey as well as the dedicated nurses and other NICU staff that have come to know and love Ella. In the midst of all my frustrations over the past 4 months, those individuals are like a ray of sunlight.
Please continue to pray for sweet Ella’s recovery as well as strength for me and Josh. We need prayer for endurance. Also, we need strength to interact with the NICU staff in a godly way while still being Ella’s advocate.
Psalm 59:16
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.