Comfort at Home

It breaks our heart to share this news, but baby Oberon is not doing well, and has more problems than we were expecting.  Our son was an amazing trooper through the omphalocele surgery on the first day of life, and soon thereafter starting pooping and eating like a champ.  Unfortunately, he showed significant issues breathing, and after a multitude of tests, we learned of other issues that happened during development.  The most significant involving the way Obie's brain developed in utero.  Because of this, he has seizures causing central apnea (not remembering to breathe).

We worked with the doctors and specialists to fully understand (as best we can) the little guy's prognosis.  These issues Obie already has are not likely to get significantly better over time, and Obie would be challenged with basic functions like walking, talking, and breathing throughout his life.  The extent of the developmental issues he would face cannot be known for certain, but each specialist we talked to agreed that his prognosis is extremely poor.  Ultimately, we have made the decision to take Obie off the ventilator, discontinue his intensive care, and take him home.  He is under what is considered comfort care, as we spend time with our son and try to make his life as comfy, happy, and full of love as we can.

We are piling up the happy memories, including meeting both sets of grandparents, two uncles, and one aunt in person.  Obie also got tech-savvy and video chatted with two more aunts and two cousins.  We weren't sure we would make it home for the beastie to see his room and meet his fur brothers, but we did early this afternoon!  

Obie in his room!

12/9/2014

 Pepper checking out Obie the day he came home.

12/9/2014

Oberon's family (mom's side)

12/6/2014

Oberon's family (dad's side)

12/5/2014

A lot of love is pouring out for our Obear, and we are forever thankful for that.  We are also thankful for him as he continues to bring smiles to our faces and warmth to our hearts.  He loves being swaddled, cuddled, and read to.  He didn't like being stuck for tests and IVs, and he seems much happier after being extubated this morning.

No one knows exactly how long this hospice arrangement will last, so please be patient with us as we may be non-responsive over the next days and weeks.  When we are able (and when our time is no longer being spent giving our wonderful Oberon all the love we can), we will share more about him, including lots and lots of pictures (feel free to enter the over/under of number of pictures of Obie in the comments).

We will share more about this later, but yes - those are Obie's precious feet!