Thursday, June 6, 2013

Goals (and Omegaven on Rock Center Friday)

A couple of weeks before Ella was discharged from NICU the Early Childhood Intervention (ECI) Coordinator met me at Ella's bedside to assess her and to discuss/write goals.  Ironically when she first assessed Ella back in September she said she didn't qualify for Physical or Occupational Therapy because she had not missed her developmental milestones (yet).  

Given that Ella was at such a high risk for having developmental delays that wasn't good enough for me.  I worked with the NICU social worker to get therapy arranged for home.  But I digress.  

When the ECI coordinator asked me what goals I wanted to write up for Ella I really had a hard time with that.  What are my goals for her?  To be healthy and develop just like any other child!  Other parents don't have to write this stuff down as goals.  

  • During mealtime, Ella will take all of her food by mouth
  • During playtime, Ella will show interest in her toys
  • During playtime, Ella will enjoy participating with others and independently reach & play with her toys

Much of this stems from my ongoing denial about Ella's special needs, since that day in the Emergency Room when the doctors & nurses tried to reassure me that having a baby at 25 weeks, usually the worst case is they have Cerebral Palsey.  Well, first of all, I was too drugged up and didn't have my phone or computer to research more about this wonderful worst case scenario they were trying to sell me on for the baby I had expected to be full-term and healthy until that moment.  More about this when I finally write Ella's birth story in detail, another post I have not been able to bring myself to write yet (either due to time or emotional capacity to deal with it).

Most parents can't imagine writing such goals for their baby as I listed above.  I mean, that just comes naturally.  People don't really think about it consciously, I don't imagine (I can't say for sure since I don't have another frame of reference).  Of course parents support their children in learning to do these things and celebrate their accomplishments, but they don't have to consciously think of these things as goals and write them down.

And work with therapists multiple times a week to get there...

Ella has a very good team of therapists assembled now.  We had to weed through a couple for certain specialties but I like her team now.  Her PT & OT have been with us since we were discharged in September.  

This might be a good time to clear the air.  

Therapy is not fun.  It is work.  E

lla used to cry through all of her sessions.  After her line was removed she began to tolerate therapy more, but still had a limit of how much she could take.  

And at 14 months old (this Sunday), she still dislikes tummy time.  She cries through commando crawling.  Sidelying is a form of torture.  

But she is making progress.  It is slow progress.  I am so proud of her, she works so hard every day!  

I came to a point of acceptance some time ago that I am happy with her doing things in her own time because I know she will get there and that it's the right way for her.  She still has to work hard for it, but she can get there in her own time.

That doesn't mean it's not hard for mommy too sometimes.  I feel it more now that we are able to get out into the world and socialize with others.  

At a playdate I'm the one who still has to hold my 14 month old on my lap while younger kids are sitting on their own, crawling and running around.  At Kindermusic or Swim Lesson, my daughter is the one who is over-stimulated and clinging to me, crying through the session.  

And why can't I get through making a matter-of-fact statement to my Financial Advisor that we need to take into account in planning that my daughter may have long-term special needs without feeling that shimmer of tears gloss over my eyes?

I am so happy!  And I am so proud of Ella!  But I do feel occasional pangs of jealousy toward parents who don't have to give these things a second thought.  And that they don't have to write goals for their little ones to eat, reach, grab, show interest in toys, sit independently, crawl, walk, talk... and the many unknowns to come.


Jen, this video is for you... working on sitting independently is NOT fun sometimes.

Rice - sensory play with OT.  And outdoors!  Mommy just wanted to make sure I didn't eat the rice.

Hands & Knees - Hard work.

Hands & knees practice in PT

Grandma watching work on the ball with a PT/OT Co-treatment session

Distraction during PT




OMEGAVEN ON ROCK CENTER FRIDAY NIGHT

It's ironic that at the end of this post I am switching gears to something I am so thankful for in regards to Ella's current state.  You see, as much as I express my feelings of frustration and jealousy above, I know things could have been very different.  If it were not for this wonderful drug Ella may not have survived or would likely be doing extremely poorly and on a transplant list for a new liver and intestines.  

Last June, Ella's direct biliruben levels had peaked at 11.1 (normal should be under 0.2), meaning her liver function was being severely compromised due to the IV ongoing nutritional support (TPN). Right before Ella's 2nd surgery her doctors told me about Omegaven.  It is a lipid (fat) made from fish oil rather than plant oil that has shown amazing results in babies with liver disfunction.  It is not an FDA approved drug.  Our hospital had used it on occasion for other babies and knew how to file the paperwork.  It took about 3 weeks for FDA approval to come through so they were able to begin administering Omegaven to Ella in late July.  

If you recall, one of the primary reasons we had to wait on discharge from NICU was that since Ella was going home on TPN, paperwork had to be resumitted to the FDA for approval to use it OUTPATIENT.  Oh, the hoops that have to be jumped through...  well, after 2 weeks of waiting for a response from the FDA we learned that the paperwork had been sitting on the wrong desk at the FDA and it was being resubmitted AGAIN to the right area.  At the same time there was an Omegaven shortage and Ella would have to switch back to lipids while the Omegaven was unavailable.  

That's when the NICU doctors and I talked again.  Ella's direct bili had dropped so significantly to 1.7, she really didn't need lipids (fats) at all, not the standard lipids or Omegaven.  While Omegaven at home could have benefited her, the fact that she didn't need regular lipids anymore meant that it wouldn't be inflicting additional damage on her liver.  This is when we put in place the very sudden discharge plan for Ella.  Yay!

Ella's direct bili continued to drop after coming home on TPN without lipids.  By December she was under the normal threshhold!  And I credit Omegaven for that... and so much more.

Check out the story on the controversy of why the FDA has not approved Omegaven on Rock Center tomorrow night.  I am so thankful Ella was able to get it, hoops and all.  Like Dr. Puder says, how can you tell a parent so desperate to save their child that they may be in the "control" group of the study and not get the drug that has already proven to help so many?




14 comments:

  1. Way to go Ella! Keep up the good work, strong girl!!

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  2. I distinctly heard her say, "NO!" when trying to sit up. :) It's got to be so hard for mommy to see her struggle like that - and it seems like she wishes it all came easier to her too. She is such a fighter, that much is clear. She's lucky to have you as a mom, fighting right along side her.

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    1. Oh yes, she learned that word months ago on her own (I never said it to her). And it's not only hard to watch, but I/her nanny have to put her through these paces (homework) daily. The saving grace with homework is that it can be spread out through the day 5 minutes here, 10 minutes there, rather than 1 hour straight therapy.

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  3. I remember the days of screaming during therapy and watching/hoping/being so proud of the hard work my boys were doing. My boys were born at 28 weeks five and a half years ago. Shawn didn't sit independently until around his one year adjusted birthday. Commando crawling came after that. I practically threw a party when he held himself up on all fours. Both have been diagnosed with CP.

    Knowing how very lucky you are to have your little one (or in my case little ones) with you doesn't mean you are immune to the feelings of jealousy and sorrow. It doesn't take away the questions and fear about the future during those dark moments either. You just got to let yourself feel them when they come and then move on to the business of marveling in the miracles. :)

    Many, many, MANY hugs.

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    1. I have two blogs, the one listed under my profile (the family blog) and my IF blog that's here http://www.stacieslife.com/

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  4. Thank you for posting this & sharing a window into yours & Ella's life & challenges. The 2 of you really are rock stars!!

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  5. Ella is am amazing little girl, and is so lucky to have a Mom like you.

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  6. You are an amazing mom!! What a tough little cookie you have there! Like you said she will develop on her own time, I know it's hard to accept that but you truly are doing such an amazing job. Thanks for sharing!

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  7. As we've always said, Ella is a rock star and You are a rock star of a mom. I caught Rock Center and really want to shake someone at the FDA. Can they not take the results of the treatment in the place of a study? It seems like common sense to me.

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  8. My eyes teared up for you, and Ella. You two really are amazing and I am grateful and inspired that you can find the time to share your story with us.

    We had a break through at PT today. When Aidan came out with the PTA (I stopped going back with him, we didn't know if my presence made it worse, and I am pretty sure it doesn't help) he was smiling and happy in her arms and she actually said he did good (emotionally). I still heard him screaming occasionally. That's not fun, but then I think of the fact that he is now doing what he has been practicing on his own and it helps me keep perspective.

    Your story (and so many others) has taught me, there is always perspective.

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  9. I can relate. Being proud of our kids doesn't mean that we don't sometimes notice a kid their age and see that they are at completely different stages. Thanks for admitting it - it's not easy to do, but there are a lot of us who do it too.

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  10. I feel the same way about those goals! We're working on sitting over here too and the pt homework is torture for my little guy. I made a mini ball pit to try and make it more fun. I put a bunch of those mini balls in a 18 gallon storage tub. It gives him a little bit of support but not too much. He enjoys trying to eat the balls and takes him a while to figure out that he's working.

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    1. Great idea about the ball tub! I may have to try it soon!

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  11. I think those are all normal feelings and hopes and dreams for your little one, but I also think that Ella is SO lucky to have you as her mom - someone who is so committed to getting her on track and as healthy and successful as possible! You are BOTH doing great!

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