The past 5 days since my last post have been all about patience for me, Mary and Remy.   I have been pretty busy working in the field the past few days.  Other than that spending days at the hospital with Remy, working from home, and spending a few late nights emptying and re-organizing everything at home after our apartment was completely taken over with heavy layers of construction dust.    Insulating Remy’s new room and having to a do a complete gutting also brought on some unexpected surprises.  We are slowly but surely getting things back into order.

To the more important stuff.   Remy has progressed since the last post.   She is down to about 2,500 grams which about two weeks ago was over 3,500 grams.  What does this mean?  She is losing significant water weight!   She is peeing most of it out, which is what we hoped for.   She is still not very active.  Though she continues to give occasional hand grips and toe curls throughout the week.  She also expresses that she is pissed off or upset when she is disturbed.  Especially when she rotated or any tests are performed on her (she has to be rotated to balance out the swelling).  It’s a good sign.  The hard part is that these changes in her body can be uncomfortable and painful.  When she was at her most swollen, she didn’t feel as much pain as she is feeling as it decreases, so the smaller and healthier she gets, the more extreme the pain gets.  She is often administered Fentanyl, a pain-killer to help her cope.   Her vitals for the most part have been where we want them to be.   She has still been unable to open her eyes, as they are still quite swollen, but we are hoping that will change soon and we can look into our little girls eyes again.

The staff here, as well as us, are starting to get to know her better and what she can and can’t handle, physically.   At least we all tell ourselves that.  She has been weaned on just about everything, but it is an extremely sensitive process in Remy’s case.   She often does not tolerate the weaning and she has to go back up on doses or oxygen levels.   Her MAP’s (blood pressure) or SAT’s (oxygen levels)  are more or less okay because they are being manipulated by drugs and machines.   Today is also 20 days straight on antibiotics.   We hope to be able to end that cycle within a day or two.

Remy is still very sick,  we learned early on that we have to be grateful but remain cautious  when absorbing any good news.  In the same token we see improvement and more ‘consistency’ both physically and mentally with Remy over the past 5 days and that has us optimistic!   That’s why we’re saying were in limbo.  She has done this before, gotten significantly better and been just about to turn the corner, and she falls back.  Hopefully not this time!  I know many of you were anxious to read.  I tried to keep many in tune with Facebook updates and spread the news as much as possible, but I know you all understand that as important as it is for me to document Remy’s story and as therapeutic as it can be, sometimes it is very difficult to even get to, especially this past week.

For now I don’t have much more to report. We remain positive,   We are patient, but equally anxious to see more significant changes and see our baby do more on her own without the assistance of meds and machinery.   Mary and I are both exhausted!  We’ll take happy improvement exhausted over frightening setback exhausted any day of the week though.   Our priorities have changed over the past seven weeks (to the day since Remy was born) and we continue to learn so much about life and parenthood.  Remy is definitely getting stronger,  but she is telling us to be patient and give her the appropriate time to heal and everyone is  listening.  She is the boss, and both Mary and I and the NICU staff are at her service!

Here are some pics which tell short story without words.  The last one is from  just a few minutes ago.


5 thoughts on “Limbo

  1. Just want you to know that we have been following yours and Remy’s journey with all our prayers and love and support.

  2. We are friends of Bill & Kim and they alerted us to your journey through Facebook. Our hearts go out to all of you, but especially Remy. Please know that your message is being followed across the country, and possibly the world. We hope and pray that Remy continues to improve. We know she has wonderful parents who are looking forward to showing her the wonders the world has to offer her outside of a hospital room. Stay positive and keep posting! Go Remy Go!

  3. Yes we all are hopeful that Remy keeps improving for the better and the setbacks she’s had are a thing of the past!!! But she is obviously a fighter – and hopefully all the love we’re sending her way is helping her in that fight! I pray for you guys every day and I want nothing more then Remy to get better and come home from the hospital. Go Remy Go – hang in there little girl, I can’t wait to meet you!!!

  4. Thank you so much for the updates. I constantly check in to see how Remy’s progress is. Keeping you all in our thoughts and prayers. A special shout out to Remy, You go girl!

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