The Grind

Whew.

I love spending 2 and a half hours with my baby, except when those 2 and a half hours are from 2-4:30 in the morning. Such was the start to the week. Riding the caffeine wave long and hard today.

The Good:

Bella, Ali, mommy, and daddy rode "Small World" ride at Disneyland last night! It was Bella's first ride! Her eyes were HUGE! It was really cute. We had a really good time last night. Ali has been really good with her manners of late and was rewarded with a long overdo trip to D-Land.

Regional Center brought a Physical Therapist out on Thursday to do an eval on Bella to see if she is at-risk and eligible for services. Turns out she is. I put it in the good column, because now she will get weekly PT to help get her the physical development she needs and is avoiding due to her leg and G-Tube button.

Despite it all, Bella continues to smile, laugh, and be mostly joyful (especially when medicated).

The Bad:

Bella's foot. 'nuff said. The knee isn't much better. They go through cycles. We had quite a run where the foot was good, and it was just the knee giving us trouble. Now it's both. By the end of last week, the skin had sloughed off the foot completely and it looked pretty much the way it did the day she was born. That was frustrating. The skin just won't "stick" on the foot and knee - where it was missing at birth.

Bella is going through a period where our normal late night soothing techniques are no longer working. Having to hold your infant gently down in her crib while she tires herself out from screaming so she doesn't further injure herself is NOT FUN. Holding her in our arms is just more dangerous when she struggles and harder to protect limbs and head during her screaming fits. In addition to being freakishly big, she is freakishly STRONG as well, and when she writhes in our arms, the possibility of her skin shearing against our body is very scary.

Plus, when she spits her binky into her crib, it's easier to retrieve than when she spits it onto the ground. Never overlook the small stuff, right? :)

We are booked for Minneapolis Jan 6-8 to consult with Dr. Wagner at U of M. We will know a lot more about 2010 after that trip. Now, we just need to convince the new insurance company it is in their best interest if we decide it's in Bella's. Another battle for another day.

If She Gets Up Thrice...It's Down Right Diabolical!

I just accidentally erased this whole thing, so here goes TAKE 2....

So, the whole sleeping through the night thing? Just a fluke! Rats.

I figured it out...
If Bella sleeps through the night...it's a MIRACLE
If she gets up once...we get our 5.5 hours and deal with it, BUT
If she gets up twice...this represents an exponential loss of rest, AND
If she gets up thrice...(hehe I said thrice...a la LAST NIGHT)...it's down right DIABOLICAL!

Having put a moratorium on the caffeine weening has helped me a little at least. Ang, well, she's beat! I realized as I was drifting on the freeway the other day that I'd rather be full of caffeine and alive, rather than caffeine free and dead! So, Starbucks, I'M BACK HONEY! DID YOU MISS ME?

The sleep interruption may have something to do with the two big new blisters Bella gave herself on each foot. :( She was kicking like a mule the other night due to a bout with gas, and yesterday we found to biggies. The one on the left foot wraps all the way around from the top to underneath. Too bad too; the "bath incident" wound finally just cleared up.

Meanwhile, we have implemented a token economy with Ali and it is working like gangbusters (for now). She eats all her food, stays dry, and listens (for the most part). In return, she gets a new toy or DVD come each Sunday. It's good leverage, because she knows she can lose the privilege at any time during the week, and it's stuff we would have bought for fun anyway. Gotta love the proverbial carrot at the end of the stick trick!

In other news, there is a family with TWO new babies in CHOC with EB right now. Crazy. We have reached out and look forward to hearing from them. We have learned SO MUCH SO QUICKLY, it would be GREAT to pass it all on to save them some of the unnecessary pitfalls that can occur in those first few weeks. I sent them an email through Betty, our Angel of a PT, that outlined some basic steps to follow while still at CHOC to keep their babies safe as possible and offered to come consult on dressing changes. I really hope they call us. It would feel so great to pay it forward so quickly.

Lastly, here's the Providence story of the day:

In NICU music therapy, there is a device invented that stimulates preemies who are having trouble transitioning from feeding tubes to oral feeing. It never really got off the ground after just a few prototypes, and 7 years later, a second company attempted to pick up with a second generation of the device. I had met over the phone the Dr. who was heading up Generation 2 last summer. After being in the NICU, it dawned on me just how many babies NEED this device, and last week I pledged to myself that I would be instrumental in deploying it nationwide. Problem is, I heard rumors it was in a legal battle between the two companies. I tried to get in touch with the original inventor, but she is out of the country, so I rang Dr. Wren, the "Gen 2" developer, and she confirmed today that is is in fact d-e-a-d. The company that made Gen 1 and the company that made Gen 2 couldn't come to an agreement over transferring the license so it died.

I told Dr. Wren that I just had a baby with a rare skin disease that may or may not be fatal in the NICU, and as a NICU MT, I realized that this device needs to be in every NICU, just like the feeding pump that fed my daughter for the first week of her life. I told her that one way or another, I am going to be instrumental in making it a reality.

Dr. Wren replied, "Is it Epidermolysis Bullosa?"

Stunned, I replied, "Why yes, it is!"

To which Dr. Wren began, "Oh I am so sorry, Tim. However, you should know that I developed the first (some scientific name for a type of wound care product for EB) while doing research with Children's Hospital of London...." She continued for a minute describing exactly what her product does for EB patients. Her words faded away as I looked out the sliding door up to God in Heaven. I thought I was calling about NICU MT, but God had much more planned. Providence. What are the odds that this Doctor who is from London, who lives in Reno, who I meet while in San Diego, shares the same passion for NICU MT and EB? PROVIDENCE.

It doesn't end there, though...

Dr. Wren asked, "So, you're in San Diego?"

"No, I did my internship in San Diego. I live up in Orange County."

"Really? One of my companies has a manufacturing facility in Costa Mesa (only 20 minutes from me). Maybe next time I'm in town we can get together for a cup of coffee."

"No, Dr. Wren. The next time you're in town, I'm taking you to lunch to find out what exactly it is we are meant to do together."

"Well then, I look forward to it, and I'll call you when I'm coming to town!"

We part ways.

IF you believe in the Silver Lining, you will ALWAYS find it, IF you don't give up. God will NEVER give up on you, BUT the Silver Lining may take more looking than you at first expect. Do not be discouraged; God alone can see the big picture, and you may be standing right in front of the Silver Lining, but if you either give up or don't believe, you'll miss it. If you are having trouble finding It in any given situation, ask for clues. God will reveal them. Just be willing to deal with the fact that It may not be what you originally were looking for.

Just remember Bella's Song:

Don't be afraid
to ask for help.
God will always answer you
in His or Her own way.

God's love and peace to you all.

Good night.