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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