Thursday, September 6, 2012


Another CaringBridge Post.  I went light on how frustrated I was this morning.  How the tears came and had to be blinked back.  How that feeling came back up... that I can't believe that we have to do all of this... pumps, lines, flushes, sterile procedures, nurses, therapists, etc.

Sharing one of the great photos taken by my friend S. (Shannon at Chasing Rainbows).  Isn't she talented?  I'll share more with you this weekend.

It's been quite a hectic day. I had an appointment with our Early Childhood Intervention (ECI) coordinator at Ella's bedside. This is a state run program that assists in identification and coordination of support needs for children with special developmental needs. After talking with her further today it seems they only support needs for current problems, not things she's at risk for. Like they will support facilitating a nutritionist because she has feeding problems but not an occupational therapist (because she is at risk for a cerebral palsy diagnosis in the future). 

Of course I don't care who facilitates what, I'll facilitate it, but I want her to have current and preventative care. Insurance coverage or not. Medicade or not (that's a huge, extremely confusing can of worms with no straight answers and no case manager/contact, well over a dozen unsuccessful phone calls with LONG wait times to talk to a person, who then says they are the wrong person, call "this number" instead; we're told to just wait & see in regards to post NICU coverage).

These government programs are beyond confusing. I've never had to deal with anything like it before. 

Anywho, where was I going?

Oh, ECI. I'm taking advantage because I want Ella to have every possible advantage. But I think there will be redundancies between the ECI program and our medical programs like home health care (HHC). I will just get it all into play and then figure out where the redundancies are to eliminate them. I can't wait to see how many appointments we have weekly the first several weeks until I get it figured out! I imagine things will be quite hectic until I can evaluate and put a workable routine together. 

Immediately after my ECI appointment I had another bedside meeting with HHC. The liaison, nurse manager and primary nurse for HHC all showed up and introduced themselves. Then they went to look for the nicu discharge coordinator and were gone 45 minutes! We had not done more than introductions, I had no idea what happened to them? 

While I was waiting, the NICU Physical Therapist (PT) came by and decided to see Ella during that lull. 

And rounds had been delayed this morning so while PT was bedside, here come the doctors & crew. 

PT finished up and I expressed my concerns about gaps (and redundancies) in what ECI will be covering. She said she would talk to the discharge coordinator about adding OT & PT to HHC for proactive support. 

HHC shows back up bedside after PT finishes. They had been with one of the NICU nurses being taught how to do sterile dressing changes to NICUs standards. The nurse & nurse manager say their goodbyes. The liaison has arranged a room for us to go over pump/tube/flush education for me. 

Did I mention how incredibly tired Ella was this morning? And that her fuss factor continued to increase as the morning went on?

Her nurse was over at the "parents place" supporting a family there. NICU is very full. The nurses all have 4 babies. That's a lot in NICU. So no one was around to deal with inconsolable Ella and I couldn't leave her like that. 

So we tried to do the education at bedside. Ella would scream every couple of minutes. This information is very important for me to know very well. I was completely unfocused and quickly getting overwhelmed. I know I can learn it. I just knew I couldn't absorb it at that time. It just seemed like chaos at the moment. 

Finally we cut the session short. I got a glimpse of things, that's good. I also have a document with step by step instructions, that will help. And I have a website that has resources including videos. That will be a BIG help, when I can take some time to check it out. 

The HHC liaison said she would come back this weekend when it should be quieter. The liaison and nurse will be here for discharge and get me set up at home then. I plan to leverage some NICU nurses who moonlight during our transition at home until I know I can do her medical things without them. 

There is question about private nursing coverage. My primary insurance does not cover it. Medicade might. But medicade is a wait & see mess as to qualification/coverage once we are discharged. So it's the great unknown. I'll do what I need to do out of pocket and figure it out from there. Once I'm comfortable I don't expect to need to continue private nursing, but it would be nice. 

Oh, I do have a job I need to be able to do a decent job at so I can keep it. This is very important so we can keep our house & benefits (INSURANCE). Work has been really great & flexible with my situation so far. I'll be taking about 8 weeks off when she comes home. Hopefully that's enough time to get acclimated, streamline redundancies in all of the specialists we're getting set up with and figure out how to balance therapy & doctor appointments with work. I work with a lot of people on the West coast so my thinking now is early morning appointments and work something closer to PST hours?

I'm blessed to work from home but I'll need to start looking for a nanny, assuming we will not have private duty nursing covered. Mom has offered to stay as long as we need her, which is a fabulous offer and can take some of the pressure off on getting it all figured out before I go back to work... even though it will keep my folks from their usual return to Florida in early November. 

No word from the FDA. This means Monday is off the table for discharge. HHC needs a couple of days lead time to get Ella's Omegaven once approval has been received. I didn't expect it to be Monday all along. So we continue to wait. 

Sorry about the rambling post. That's what it's like to be inside my head today. C-R-A-Z-Y!!!

On a bright note, my neighbor installed Ella's car seat in my car today!


  1. I am so so sorry that it is all so overwhelming. Hopefully soon she will be home with you where she should be and will no longer need all of this stuff. Lots of love and prayers.

  2. Hoping that she'll soon be home with you.

  3. I can imagine how overwhelming it must be (and want to note how unfair it is to have to be caught in this all). I hope that you get your FDA approval soon and get home and get settled into your new routine. She is beautiful!

  4. Beautiful photo! Beautiful girl!

    I'm sorry for all your stress & frustration. I can only imagine how overwhelming it all is. Thinking of you & Ella.

  5. Ella is adorable! I can imagine how overwhelming all this stuff is and being thrust into the world of govt programs. Glad that you have a flexible work schedule and family to help you once she gets home.

  6. Loving the photo!!!....I know this is all overwhelming!! I would ask for a Medicaid case manager....SW at the NJCU should know how to do that. I also found this program which we refer all preemies Maryland

  7. What a beautiful photo of Ella! I am so sorry you are having to go through all of this hell to bring her home. You must be so overwhelmed, but you are handling it amazingly. She will be in good hands with you!

  8. Find you on twitter and add you. Loving your blog! Hope you can look at mine too! Take care, P.


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