An Update on Penelope’s Story

It has been quite some time since I’ve posted on here. I’ve done a pretty good job of keeping everyone updated on Penelope’s Facebook page. But, I’ve not done a great job of keeping this updated. Mostly because I’m tired by the time we leave the hospital at night, and days in the hospital are filled with doctor visits and — sadly — Penelope’s fits of terrifying her parents and perplexing her doctors.

Penelope Joy on one of the few days she was not intubated.

Since Sept. 13, a lot has happened. Penelope’s shunt required some tweaking, and she went back under the knife to get it adjusted three additional times. Thankfully, the fourth time appeared to be the charm. She’s also (in no particular order):

• been diagnosed with Complete DiGeorge Syndrome (including a missing thymus and severely compromised immune system) with CHARGE Association.
• had stents put in her nose to correct her bilateral choanal atresia.
• been off and on the ventilator two additional times.
• started getting breast milk (as long as Mom stays negative for CMV).
• had lots of visitors.
• had a scope down her throat to look for issues with her esophagus and trachea (there were none).
• gotten her stitches removed from her chest incision.
• had two strokes and a seizure.
• gotten to wear clothes, meet with a speech therapist to start on sucking and swallowing.
• had her central line removed — and then put back in.
• gotten snuggle time with Mom and Dad.
• had a hearing test, which she did not pass.
• watched football games with Dad.
• met lots of new doctor friends from all areas of specialty.
• been called stubborn, interesting, particular, picky, challenging and, the best of all, robust.
• been diagnosed with hyperinsulinemia.
• met with the orthopedic surgeon — no problems here!
• gotten very sick, requiring numerous antibiotics and a few blood transfusions.
• celebrated her one month birthday.

Celebrating her one month birthday with Calvin the Pickle.

Our precious child has been through more in her one month on this earth than most people will should experience in an entire lifetime. And she’s shown me that she’s stronger than I could ever hope to be. She is our little fighter. Our little stubborn, particular, robust fighter.

Life is not what any of us would call “easy” right now. In fact, there have been many times recently, I’ve found myself looking in the mirror or looking at Mr. B and saying:

Is this really our life? How did this happen?

Not because it’s bad. It’s not — other than the obvious. I have an amazing husband, a beautiful daughter, a good job, a loving family, a huge support system, a roof over my head, an extremely competent (and kind) team of medical professionals helping Penelope … and on and on and on.

Mr. B and I have a lot of blessings. Too many to count.

But this situation, this chapter of our story? It is just so very, very different from what I had pictured for myself and my family. And so often, I go to sleep thinking I’m going to wake up and the whole thing was part of some book — and Penelope will be crying in the next room as Mr. B and I fight over who gets to go in and get her to come snuggle with us.

When I wake up, though, that’s not what it is. That is not the story that was written for us.

So, Mr. B and I live the story we are part of in the very best way we can. With love and hope. With tears and hugs. With humor and respect. Hand in hand — with complete and utter commitment to each other and to Penelope.

A little family time before Penelope had to be re-intubated.