Giving Thanks Challenge ~ {Day #9}

Thanksgiving Challenge ~ Day #9

Topic: Noelle
Title: Oxygen {as in the kind you get from a tank}

{If you are new to this challenge~which is not your typical Thanksgiving challenge, you can catch up on the details here, and please feel free to join along at any time...}


Oxygen paraphernalia decorates our home these days as it fills corners and weaves its clear, thick tubing through the living room and down the hallway and into the bedroom, or wherever the little girl who is attached to the end of it happens to be.  A box-like machine creates the oxygen Noelle needs on a constant basis, while a large back-up tank and small transport tanks sit on stand-by for emergency power outages or trips to the doctors' offices.  Although it requires some attention and maintenance once in a while or even some additional preparation time before going somewhere, it has become our normal way of life; and we rarely think twice about it anymore.  Well, most of the time.  There have been times in the past, especially when we first brought Noelle home, that I was much more eager to be rid of this inconvenience.  However, I was also grateful to have her off the ventilator and needing only a very low support of oxygen, so my emotions were somewhat mixed.  But that all changed drastically after her eighteen day stay in the hospital a few short months ago.  After weaning off the oxygen for a short time in April, she had begun a very slow and steady decline; and the lack of additional oxygen, although not the cause, became a contributor for aggravating her pulmonary hypertension flare-up.  Needless to say, between that and all of her sleep apnea and study issues, I have not been nearly so eager to wean her this time.  In fact, I have actually preferred that she have the support.  We are often asked when she will be completely sans oxygen, and our answer is the same as what the doctors say to us, "she will tell us."  It is a standard statement that we often hear with much of her care, meaning that they do not really know and can only watch her little body for signs of being ready to take the next steps.  So we wait {patiently, I hope}; and look forward to her appointments on Monday that may give us the signs of improvement necessary to take another step forward and begin the weaning process once again.  They will do it over a long, slow process this time; but I am grateful that Noelle is able to have this same breathing support at home that she once had in the hospital for so long.  Any amount of inconvenience is entirely worth the effort in order to have our sweet girl home with us at all times.  So while I have not always had this attitude on this particular aspect of Noelle's care, I can thank God that He has changed my heart and made me grateful for both the additional oxygen support for Noelle, as well as the natural oxygen He provides for us every moment of every single day. 

If you are local and would like to help a relief project for New Jersey this week, please check out this page and do what you can to assist this effort.  

***Do not forget there is less than one week left to submit your entry for the book project for Noelle's birthday.  You can read about the project and the deadline by clicking here .  We are enjoying the submissions we have already received but would love to hear from you, if you are willing to participate.  Thank you so much for helping us make Noelle's first birthday a special time of remembrance!!***