Marchese Family: Unanswered Prayers

Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. He took us by surprise a bit, as we had only been on the "waiting list" for 2 weeks! Gavin had rough beginnings- formula allergies, chronic fussiness, frequent ear infections, and finally diagnoses: Cerebral Palsy, Eosinophilic Esophagitis, and severe Sensory Processing Disorder. You'd never know these days! He's symptom free of CP and in remission of EoE! His SPD continues to give us a wild ride, but there's no sweeter boy than mine to make the journey with!

Special Needs Thoughts...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-Emily Perl Kinglsey

Wednesday, January 21, 2009

Unanswered Prayers

Whew! We made it through another day! It actually sounds like we'll be moving back to the NICU in the morning, which I'm looking forward to... one step closer to home! Of course, I also don't want to be so over anxious and excited about going home that I rush her. The last thing I want for Grace is to end up back here sooner than necessary. Grace had an ultrasound this afternoon to see why the sudden fluid became present. The concern was that with her neck IV there may have been some sort of clot present that kept the fluid from moving around the area, accumulating in the pleural area around the lungs, causing her to have difficulty breathing.

Good news- sorta.... It's not a blood clot! Unfortunately, it's a pleural effusion. Here's wikipedia's definition:

Pleural effusion is excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs. Excessive amounts of such fluid can impair breathing by limiting the expansion of the lungs during inhalation.

If you were to look it up it would scare you, because it goes on to say that it's mostly occuring when there are life-threatening issues... but there is a one-line blurb that explains Grace's difficulties:

Pleural effusions may also occur through medical/surgical interventions, including the use of medications (pleural fluid is usually eosinophilic), coronary artery bypass surgery, abdominal surgery, endoscopic variceal sclerotherapy, radiation therapy, liver or lung transplantation, and intra- or extravascular insertion of central lines.

Essentially, they were in chest mucky-mucking around, taking lines in and out, and this jarred some of the lymph fluid, which leaked into the pleural area, causing Chylothorax.

Now for Wikipedia's definition of that:

A chylothorax is a type of pleural effusion. It results from lymphatic fluid accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. The most common causes are lymphoma and trauma caused by thoracic surgery. The effusion is characteristically white and milky in appearance and contains high levels of triglycerides.

So- basically, we all have a pleural space, the area between our skin and our organs, and when we cut ourselves, we experience a sort of weepage, a really clear watery-like fluid that leaks from the wound. This is what comes out of her chest tubes typically. They sent some to lab, and they found high, high levels of fat and triglycerides. To overcome this, they've put her on a fat-free diet, basically mud-tasting formula.

Which brings us to the ultimate good news.... let's circle back a few weeks. I originally tried breastfeeding for Grace. I took hormones, wore patches, pumped, the whole nine.... but was MISERABLE! The hormones made me so sick, so I eventually stopped taking them. The whole concoction (breast pump rental, meds, etc.) was costing me over $200/month and I still had no guarantee that I would be succesful. I was upset, but figured God had a plan for us.... and so He did..... Because of Grace's chylothorax, she can't have breast milk.... for at least 6 weeks, by which point we BETTER be home or getting ready to go home! She'd be getting ready to start a full-formula diet with us, so this is an easier, gentler transition for her to get used to the formula. She was able to use the breast milk up to this point to grow strong, and I really think that this helped her heal quicker after her surgery.

I have to remember to trust.... I think of that Garth Brooks' song again, Unanswered Prayers. I was so pissed that I couldn't handle the hormones, and pissed that I failed at breastfeeding. I felt like a horrible mother, but even had I perservered, my daughter wouldn't have been able to have it- so you sometimes have to trust, even in the yucky times. This little girl has already taught me so, so much. I still have so much to learn!

The contact agreement didn't happen tonight.... We agreed to talk at 7 pm, but it's now 8 pm, and still no call.... I'm not going to beg her to talk to me, so I'm going to get a good night's rest and be wide-eyed and bushy-tailed for my little angel tomorrow morning.

Good night!

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