Papel Picado

Papel Picado

Friday, May 16, 2014

The Plan: An Update

I received the results and plan for Olive today, so I will try to explain it all to you as best I can. 
This morning when I arrived to the NICU, the GI nurse practitioner came to speak with me about Olive's pH test results. She told me that she was, in fact, refluxing. 
Here are two things that will help with what I am about to explain about the results:
1. Sometimes Olive has these coughing fits ranging just from a few small coughs to coughing until she's gagging. 
2. Sometimes Olive desats (drops her oxygen levels) or her heart rate. These are more concerning.
The correlation between coughing and refluxing was 100%. This is good because it means she's protecting her airways when she refluxes!
The correlation between desating/heart rate dips- only about 20%. Which is... Well. Hmm. It doesn't give us a clear idea as to why she's still desating and having heart rate dips. 
At first the nurse practitioner led me to believe that because reflux didn't seem to be the reason for her desating/heart rate dips, she may not need the Nissen Fundoplication (or a surgical procedure to wrap part of the stomach around the esophagus, this stopping reflux from happening). I was a little concerned with this because if it wasn't recommended, what would happen next to help her get over this hump? 
So she would just receive the g-tube, or surgically placed feeding tube that feeds directly into the stomach. The reason for the g-tube would be because even without reflux, Olive is aspirating and cannot take a bottle at this time. This was proven when they did the modified barium swallow study (see explanation below). 
Aspirating means it's not safe for her to come home due to many factors including the heart rate drops and desating. It also puts her at a higher risk for pneumonia. 
After further discussion, the doctor reviewing her study feels that the reflux was happening enough it is at risk of damaging her esophagus. Also, since she is having to work double to protect her airways (the coughing mentioned above), her lung development is at a stand still. 
There is a chance she can outgrow all of this, but honestly, it could be months (or even years) without intervention. Without her being able to take a bottle safely, she will need a feeding tube, and in order for her to come home, she will need the more permanent feeding tube rather than one that can be pulled out of her nose so easily. 
The positives are- there is high expectation she will come off of oxygen soon after. They have also said she can go home on oxygen if that is the only thing keeping her in the hospital! This means we may finally have a plan for discharge! After the surgery she may take a few steps back, but we know the accelerated steps forward will be more than worth it!  
We also won't know a specific date or timeline of discharge, but we will finally have direction whereas the past 2 months have been very up in the air. 
The things I will ask of you all is this- pray with us, but please don't send us information you googled about this procedure. It is something we were advised not to do from the beginning and it has kept us at peace about the decisions. We would rather pray and discuss with the various doctors. 
We do not have just one or two doctors helping us with this decision. We have an entire staff (nurses, respiratory therapists, neonatologists, specialists, nurse practitioners) as well as other parents who have already been through these procedures with their children. 
We also believe in the peace that surpasses understanding and will not make any decisions without having this peace. 
Thank you all so much for standing with us in agreement for Olive's full healing. We 100% believe for a miracle always, but are so thankful for medical miracles everyday! 

Nissen Fundoplication 


*In a modified barium swallow, you ingest foods and liquids containing barium sulfate, a contrast dye that sharply outlines your mouth, throat, and esophagus on x-ray film. Using real-time x-rays, or fluoroscopy, a physician and a speech pathologist observe the movement of the barium through these structures on a television monitor. Modified barium swallow is specifically aimed at evaluating the swallowing process in individuals who have difficulty speaking or swallowing food without inhaling, or aspirating, it into the windpipe.

Wednesday, May 7, 2014

We Really Didn't Need "This": An Update

I don't know if you remember, but before in one of my blogs I mentioned a nurse who upset me by telling me I needed to let my self rest (which she was right, by the way). 
Well, I ran into her today at one of my most vulnerable moments. 
You see, Monday was Matt's birthday, yet even though birthdays are supposed to be fun and magical, his morning started with a pretty significant wreck. While his car is totaled, Matt walked away. It is completely stressful and really, we didn't need this. I am dealing with all of this in the midst of everything going on with Olive (which I will get to shortly), and sometimes it just seems too much. 
I went to clean out the car and while I am completely sad it is destroyed, I broke down just thinking of how great God is. Matt was in this destroyed car when this happened, and he is perfectly fine. 
I worried about him every single day driving down that road, and God told me he would protect him, and He fulfilled and will continuously fulfill that promise. 
After dealing with all of that, it was back to the hospital to accompany Olive to her swallow study. This test tells us if she is ready to take bottles.  Somehow deep down, I could read the signs she was giving us and she was saying she wasn't ready. 
I could feel guilt of unbelief rising up in me, but then I remembered something: God does not make us feel guilty. Even if I did have a lack of faith (which I didn't), it wouldn't even affect her. God is more powerful than my unbelief. 
So she "failed." She aspirated, which means food was going into her lungs. Even when thickened. My heart was completely broken. I knew what was coming. 
Today I was represented with the g tube. A surgically placed feeding tube. A Nissen fundoplicatin will accompany this tube being placed to help with reflux. 
Although it was presented before and we confidently agreed we wanted what was best, we truly believed she was growing out of this issue.  
Everyone has been praising her for how well she was doing, but now this? 
I ran into the nurse mentioned before on my way in today, and for some reason she can always read me. Or maybe she just cares so much it actually matters to her when I quickly respond, unconvincingly "I'm fine." I broke down and told her what was going on. 
Her response? "Things are going to get less shitty, okay?" 
She explained to me that not only will Olive come home sooner, but this will allow her lungs to mature, and help her grow out of this aspiration problem. That there is still a chance of bottle/breast feeding. More importantly, it will give me more quality time with Olive. Right now it's all just so hectic. 
She forced me to allow myself to see the positives. We never really "need" the negatives, but it is up to us to see the positives when these things happen. 
So here I am, waiting for them to do more tests to make sure her body can handle this procedure. Whether this procedure will even help her. 
Please be with us in declaration for the wisdom of the staff to make the best decisions for Olive. For us to continue to be patient as we wait for her to come home. And for peace over us and all of the other NICU families out there who are facing these same challenges with their tiny little wonders, in Jesus mighty name.