A Good Week...Almost

We started last week with a doctor's appointment that changed our lives, literally. The entire family, all five of us, piled into the car and went to Georgetown University Hospital's Pediatric Apnea Center. The Apnea Center was able to help us with Eleanora's nutrition and growth.

Eleanora is 'growth restricted' and needs more calories, but she doesn't have the space in her stomach to accommodate it. The Apnea Center was able to help us by increasing the concentration of calories in each of her feedings. Additionally, Eleanora now receives 'continuous feeds' throughout the night--meaning she receives her milk via a pump that continuously runs for 12 hours. Essentially she never becomes hungry or full, but rather feels content throughout the night. This results in SLEEP (for everyone)!!

Greg and I are now getting sleep in more than 1.5 to 2 hour increments. We had been functioning on so little sleep for so long that we were both becoming unrecognizable. Both of my eyes were swollen and inflamed--so inflamed that my vision was becoming impaired. I was losing my voice as well. The physical and emotional toll have been draining on us. Eleanora's physicians were also concerned for our well-being.

Because Eleanora has been receiving more and more calories she has gained more weight. Now Eleanora weighs 6 lbs 1 oz. Hooray! We have moved out of preemie diapers and into newborn diapers. This is a big success for us.

However. By Thursday morning Eleanora's apnea spells were increasing--both in frequency and length. The spells were predominantly taking place mid-morning...and so mid-morning became bath hour. I was desperate to keep her simulated. Ultimately it won't change her likelihood for survival, but perhaps delay her passing.

Seriously...

What's worse than finding a worm in your apple?

Finding half a worm.

This is literally how I began the morning. Eleanora is predominantly given my milk, however, because of feeding difficulties we supplement her 'milkitarian' diet with formula. My vegetarian lifestyle simply does not offer her enough calories to sustain her between meals and because Eleanora does not grow like most healthy babies her belly continues to be tiny (she's still less than 6 lbs and more than two months old). Essentially, she needs more calories in a very small belly as she's becoming more active.

As I began to prepare her feeding tube this morning I noted something black floating in the bottle. What could it be? A worm!!! Seriously. Well, I'm not completely sure. I don't have a microscope handy. Take a look for yourself. It's awfully symmetrical...in the light it appears to have innards...looks like it has a clear head and tail. Nonetheless it's disgusting and shouldn't be in infant formula.

I called the company (I'll refrain from naming them here to avoid a deformation lawsuit) and they dutifully read me their safety protocols. Who cares about safety? Clearly their protocols aren't working. But! They'd like to send me complementary formula. Seriously.

5:08 a.m.

Eleanora has become accustomed to sleeping on my chest (and my husband's) throughout the night. We've also discovered that I stop breathing (while sleeping) whenever Eleanora misses a breath (she is most likely to die this way). I've been waking up exhausted. Sometimes gasping for air.

At 5:08 a.m. this morning I was awoken by Eleanora's lapse in breathing. After trying to arouse her several times--calling her name and rubbing her back--she didn't budge and wasn't breathing. I wrapped her in a blanket and began to get up to go get my husband.

I assumed she had passed. Just as I began to rise, she took a deep breathe. (Relief...)

I have to admit...it was surreal. In many ways I was on autopilot--just going through the motions. I kept thinking...I'm going to have to wake up the girls...how am I going to tell them?...I need to keep her body warm...how do we get to the funeral home...and so much more. I was simultaneously pleading...no, not now...I'm not ready for you to leave...please. It seems impossible to think that all these thoughts happened in the span of a few seconds...a few LONG seconds.

Nonetheless she began to breathe again. We had another day together.

Double Trouble

In case I had forgotten, the last two weeks have been a great reminder that I am still the parent of two other rambunctious children. First I'd like to ask you: what would you do with 1000 individual sequins?

a. Make a prom dress

b. Decorate your shoes

c. Throw it all around your parents house so that every room (and everything) sparkles.

The answer is...c. The girls loved their decorating idea and giggled endlessly about the mess. Humph. So. I took the pixies upstairs and asked them to begin picking up every single sequin. After 35 minutes of crying and pure frustration I brought them freshly baked chocolate chip cookies and milk. They agreed that decorating the house with sequin wasn't much fun, especially picking it up. Problem resolved--or so I thought. Three days later they did it all over again.

The next day Charlotte came down with a summer flu. It lasted 7 days. She was miserable. I was miserable. I spent my days running between her and Eleanora, comforting whomever was crying at the moment. I washed my hands so much they started to bleed. Eleanora is immune compromised and simply cannot get sick.

Immediately after Charlotte felt better, Addie dutifully came down with the flu as well. Round two. Addie was only sick for a few days (it's amazing what growing up in rural Africa can do for immune system).

We're all recovering now. Luckily Eleanora never got sick. She is, however, having more and more challenges with daily life.