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Day 26 - NICU Life continues...

Oscar Update: Oscar was successfully extubated at 9:50am on Tuesday, December 12. He has a nasopharyngeal airway in for now. He is continuing to be on NAVA (Neurally Adjusted Ventilatory Assist) settings on the ventilator. His NAVA Level is at 1.0 which we would like to get back to 0.0 and his PEEP (Positive End Expiratory Pressure) Level is at an 8 which we would like to get back to 7. His blood work this week from Monday and Tuesday came back within normal limits in most areas which means his kidney and liver function seems to be improving along with not having a bacterial or virus infection.

We have been on this journey with Oscar for 3+ weeks now and it is emotionally draining. There are things that have gotten easier or I guess more routine/normal and somethings that I don’t think will ever be easy or normal.

Looking back to the day Oscar was born I remember how within hours after my c-section I was up walking, showered, and on my way in a wheelchair to the NICU. That was the beginning of how this journey would be so different. After you have a baby, your baby is supposed to be in your hospital room. Your supposed to be able to pick them up when they cry and hold them skin to skin whenever you want. Your supposed to get pictures sitting in your hospital bed holding the baby with your other children beside you and your husband.

My time in Labor & Delivery wasn’t that way. At night I slept in a room by myself and heard babies crying in the rooms next to mine. I would wake up to pump and have no baby to feed and instead of looking at Oscar I would call his NICU nurse during the night to check on him. I would wake early, 5am, shower, and push my wheelchair through the hospital down to the NICU. Be with Oscar and Brian. Brian would wheel me back to L&D after morning rounds in the NICU. I would meet my day nurse then head back to the NICU. I would not return to my room till 9-11pm at night and repeat the process all over. Looking back on that piece of this journey itself it was lonely and when I see Mom’s being wheeled into the NICU to see their newborn babies my heart hurts for them because I remember those feelings all too well.

Day to day life in the NICU is like a roller coaster ride. When lab results are good, your child is stating well, gaining weight, tolerating feeds your climbing the hill and it feels great. The only problem is once you get to the top of the hill the rollercoaster goes down. Brian and I had the discussion today that it will always be something for Oscar. If it’s not his brain it is his liver, if it is not his liver it is his kidneys. If it isn’t heart surgery, it will be cleft surgery, if it isn’t cleft surgery it will be g-tube surgery. Oscar will always have something going on.

As Oscar’s parents we have the painful decisions of determining what is right for Oscar.

  • How many surgeries do we put him through?
  • How much intervention do we provide?
  • What if we elect for a surgery (tracheotomy) and Oscar dies on the operating table?
  • Is Oscar in pain?
  • Does he feel loved?
  • What is truly best for Oscar?
And right now all I can say is we are taking everything day by day because it does not get any tougher than this.

As a person with a Type A personality and likes to plan I am now rethinking the way I approach each day and understand that the events of the day are not determined by me. My day to day activities have changed from me running a classroom to being a mom in the NICU. At school I had control I was in charge and here Oscar and the doctors are calling the shots. My thoughts and opinions are definitely heard, but control I don’t have. So as I begin this new day I will try my best to give it to the Lord because let’s be honest He is running the show anyways. :)

Prayer Request:
* We would be home as a family by Christmas.
* Brian and I would give each other grace, see the best in one another, and truly listen to each other when it comes to decision making for Oscar and our family.

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