One Week At A Time

It's been two weeks that's felt like two years, but I can honestly report that the fear seems to have become intermittent instead of constantly paralyzing.

Kylie has healed beautifully from her surgery to place her permanent feeding tube. She is now taking her formula (nutrition without phenylalanine) via pump feed every single night. She just had her 5th IV in three weeks started once again today, so it looks like a PICC line is in her near future! She has started complaining of excruciating headaches the past couple of days which makes it impossible for her to focus and articulate her thoughts. I have to admit though, it's kind of nice to win an argument for a change!

Every morning I get up at 4 a.m. to start her IV fluids and medication before she wakes up and the sickness kicks in to the point of no return. On this particular morning, I open the door quietly as to not wake Lopez. He has taken the night shift to take care of her once again... bless his heart! The faint smell of fresh paint makes me smile. I have had plans to paint her huge bedroom that lays a top my entire three car garage so many times throughout the years and just never got around to it. Maybe because it's so ridiculously huge! I find myself standing in my daughter's bedroom and smiling at 4 a.m. in the dark! Gosh, I haven't done that since SHE was a baby.

Problems & Promises

The ultrasound to confirm viability was just yesterday. My daughter's little kidney bean sized baby prooved a strong heartbeat&measured perfectly.

Despite the happy little camper in her belly, the past two weeks have consisted of morning sickness that has effectively turned into all day & all night sickness. Two nasal gastric j tubes have effectively been placed & threw up again. A hep lock was placed to administer IV anti-emetic medication & fluids.

Today, we are here prepping her for surgery to have a permanent gastric peg placed in her tummy. Her Phenylketonuria (PKU) requires her to take in 1800 ml of formula per day to keep her phenylalanine levels low enough as to not cause problems for her unborn child. 

As we are getting ready for this risky endeavor, I realize her joy is slowly slipping away. That same joy she held so proudly just two weeks before.As the mother of the mother to be, it was that very moment when I decided exactly what my job would need to be for the next few months. 

As she is wheeled away into the operating room, I try so hard not to show a tear... I reach over and give her husband a little slug in the arm. He looks up from his obsessive game as he earnestly tries to keep his mind busy, smiles, and together we nervously laugh together.It was then apparent we would be keeping the joy for her until she wakes up again.It just so happens to be the greatest privilege in the world to be able to share that with people that you love!

Her Joy, My Fear

In most cases, a parent can imagine the flood of emotions they experience when their healthy, ambitious eighteen year old daughter comes to them with news of an unplanned pregnancy. Every dream for her future that had been nurtured and promised to her since she was a tiny little girl... crumbled in a single three word sentence, "I am pregnant".

In my case,the emotions were very similar, however my eighteen year old wasn't healthy and her pregnancy was planned. I was mad at her for being reckless. I was mad at myself for not doing something that I am not even sure I could've done. There was a moment when I looked her in the eyes and I could literally feel the joy she held deep inside and I was mad that I couldn't share that with her. As a mother of a daughter with Phenylketonuria (PKU) who had been told  her whole life that she should consider adoption for her future because of all the risks involved, I was blind to see any joy in this up hill journey that we were all about to embark on.

I will continue to struggle every day to find the joy she so desperately wants to share with me simply because as her mother, I can't stop the fear that has taken a firm grip and continues to squeeze me tightly.

It's time to get ready for a new baby in the house and share the joy, because it's coming despite the risks and the fear!