How to Deal?

Okay I know I posted yesterday.
It was a bad day, Turns out I received information from the Nurse that differed from the Doctors.
So frustrating.
Yesterday, Cleo had her eye exam, the report from the nurse. "NO CHANGE, but not to worry".
So of course that coupled with the set backs with her more frequent grade 2 A's and B's caused me to be very upset as things were put to a halt.

So unhappy with the prognoses not to mention the the nurses lack of compassion and inability to show empathy, I called the doctor about the results and his opinion.

Doctor's report: "The Ophthalmologist is pleased with her progress in her eyes, says they have reached the level that he would be comfortable having her home with, as long as I was willing to bring her back every week to check her eyes as an 'outpatient'---- (duh, of course I'd be willing). She is having Apnea however, and that is holding her back. After 3 days of nothing but zero's she had those grade 2s. We can't send her home with those, however, we will be working with those, and you can expect that if we can get those under control that she can go home with in a week or two" I have to say hearing that was good.  So my day improved after my last update.


I must report now on her current update: This is from a trusted nurse:
She is having more grade 2s then she has in a long time. FRUSTRATING, they have been weaning her oxygen and she is simply not ready to be weaned, they have been doing it very slowly and she doesn't tolerate the changes well.

We need her on a lower flow, something consistent with what she will have at home before she can be discharged, she needs to be able to handle that change on a constant basis, (seven days with out A's and B's) on that flow. We are not near that right now.I am afraid I have to accept that this will be longer then I want it to be.
I asked the nurse to be very honest with me. She said it could happen with in the 2 weeks of her due date, but at the rate she is going I should not expect it to happen that quickly, to expect 3-4 weeks more.
With that I can take a deep breath and cry a little more, AND GEAR UP FOR A LITTLE LONGER.

How to deal? How to deal?

I am loosing steam fast, I need a renewal of energy to handle the next few weeks, which I think, realistically, is now longer then I had dreamed it would be.
When we started  this journey eleven weeks ago they told me to expect until August 1st, her due date--
 I was preparing myself for that date. Having a date in mind made things more tolerable. Unfortunately set me up for grave disappointment.

Now I have to realign my hopes and wishes and even my prayers and hope as that day comes and goes that I do not fall apart too badly. Knowing this now, I can stop giving this whole thing a time frame and just pray to have her home when she is ready, Not when I want her to be home.

Because if I had it my way she would be home today. I would have carried full term and I would be snuggling right now with my little baby.
Healthy, strong and only complaining of my lack of sleep. MY WAY IS EASIER for sure.
Only I don't get to make that choice, I don't get to control the universe, and as of today I can not even control my heart and the pain it feels right now.

As this new development has reared its UGLY head, the feelings I have are laced with a terrible smattering of guilt. I failed her, and some how I feel like I OWE her to fix things, my being there should bring her home sooner, but it doesn't change the time she needs to grow stronger, but somehow I feel like it should and it doesn't, then I feel helpless in her life. I feel so responsible despite the knowledge that I am not.

I have been able to spend much more time with her, I go up now every other night sleep over at the Ronald McDonald house and then I see her in the morning and come home again with my family so really Monday-Thursday, I spend time with her and feed her. It feels so good, then I have the weekend to regroup, we go down as a family on Saturday and then the week starts again.  

MY PLAN:

I think I will need to spend a few extra minutes on my knees and wet a few more tissues and take a deep breath and make it one day at a time.  GOD give me power to get out of bed and be kind, (and gentle with myself)  regain patience and look at the road ahead of me one day at a time.

Luckily, My husband and I have planned a little retreat this weekend, no kids no NICU and a little extra time for healing.  Though, my heart longs to be with my baby my body and mind (and another part of my heart) needs some time to get away from it all. A hike up the mountains and to breath deeply and get my mind back to where it needs to be, hopefully I can gain the strength I need to push through this heavy cloud that sometimes seems to swallow me up. I hope it will help.