Friday, February 26, 2010

Happy Birthday Beautiful Girl!

As of 5:29 p.m., Andrea is officially one year old! For those of you followers who are not on the East Coast of the US, you might not know that Andrea's birthday was commemorated by Mother Nature with one of the biggest snowfalls we've seen in a while. Ken said more than once today, he'd never have gotten to the hospital in the storm we had. We have about 18 inches of snow here; other New Jersey areas got as much as 2 feet. As a result, we were home today to celebrate. Most schools (if not all!) were closed.

One thing that many people have a hard time believing about Andrea is that she is pretty close to developmentally normal. Her age is counted from her actual birthday of February 26, but her development is considered from her due date of June 4. So by that reckoning, she is about 9 months old. She is able to sit up unassisted, can pass objects from hand to hand, can get almost anything into her mouth, smiles, laughs and makes baby sounds. When we tell people this, I think we appear to be in denial.

I'm including a very short video clip of Andrea eating Cheerios, just to show her off. She's a huge fan of Cheerios, to the point that she recognizes the box and tries to grab the cereal right off the picture. She's picking the cereal up off a tray and shoving it in her mouth. She has no teeth yet, so she has to gum them to bits. I didn't realize I had "Law and Order" on in the background, so I'm sorry for the sound track.

The videos take a few minutes to download. The speed is determined by your Internet connection.

This second video is of Andrea playing with a toy she got for Christmas. It's kind of dark - I didn't have enough light, and she wouldn't perform for a reshoot once Ken got me another lamp. Still, she's cute, and you can see her acting like a typical baby.

Because Andrea is developmentally only 9 months old, it means she couldn't have any birthday cake. Mom had a great (but sort of disgusting) idea. She suggested I mix baby cereal with a favorite flavor of baby food, making a thick paste. She then told me to mold the paste in a small ramekin, and put it in the refrigerator. It solidified into something the consistency of pudding. I was able to unmold it, warm it slightly to take the chill off, and put a candle in it. Here are some pictures of Andrea with her cake, and eating it too! Thanks Mom!

We have an eventful week coming up. Andrea has her second visit to the developmental clinic in New Brunswick on Monday. We look forward to these visits, because they reinforce our belief that Andrea is developing normally. Additionally, if there are deficits, the doctors will make recommendations for remediation before the problems become severe. We have to see the pediatrician for Andrea's 12 month "well baby" visit, and the pulmonologist to determine if Andrea can come off the PulseOx monitor. We still use it overnight, and we've had about enough!

What a year it has been. Thank you for keeping us company and supporting us through this tribulation. It has been a journey that we never expected, and are still not sure how we survived. We hope Andrea's next year is less dramatic than her first, and I plan to continue posting as the situation warrants.

Very early, I knew that the only object in life was to grow.”
Margaret Fuller

Saturday, February 20, 2010

Million Dollar Baby

I know it's been ages since I posted. February has been a rough month. Some respiratory viruses made the rounds of the family, and although I held out the longest, I was eventually sick along with everyone else. Between trying to take care of all the patients and get better myself, the blog was neglected.

For most of Andrea's life to this point, I've said that the only way to get through this experience is to stay positive, and laugh when we can. As the saying goes, if you don't laugh, you'll cry. We continue to be extremely lucky that Andrea's health is doing so well. She has continued to sleep all night without oxygen support. The PulseOx has not alarmed, and Andrea seems to be adjusting to sleeping with nothing taped to her face. It's much easier for her to move in the night, now that we leave the upper part of her body unswaddled. It's wonderful to see her roll over on her side, and position herself however she likes. The down side to that is her current favorite position; she likes to sleep on her belly, with her face pressed into the mattress. VERY stressful for us!

All that being said, all the craziness outside of Andrea's continued good health will make us insane. In the mail the other day, Ken got a letter from his insurance company, telling us that they are "investigating" the charges from the hospital for Andrea's 102 day stay. The amount they are questioning is $1,183,226.74. Yes - ONE MILLION, ONE HUNDRED EIGHTY THREE THOUSAND dollars, and 74 cents. Heaven forbid we don't reimburse that 74 cents! Now, we know this is mostly an insurance SNAFU. Babies in NICU with NO insurance get the same care as Andrea did. She is, and has been always been, covered under policies provided by both our employers. However, actually SEEING someone mail you a bill for one million dollars is somewhat scary. The vast majority of the costs should be covered by one or the other policy. I just think it's going to take YEARS before the dust settles from all this. Potentially, we could be left with several thousand in uncovered costs, but I refuse to stress about it. And of course, in the meantime, we continue to generate expenses from vaccines (currently being denied coverage by Ken's insurance), doctors' appointments, prescriptions, x-rays, blood work and sleep studies. So, she was already a million dollar baby by discharge, but I think we'll hit the $2 million mark before she graduates from high school!

We are in the final count down to Andrea's first birthday. In less than a week, she will have been here a whole year! We originally wanted to have a huge blow out party, but the doctor advised against it. Until April, it's really better to limit the number of people who come into contact with Andrea. She had a long run of good health (about 2 months) before her recent illness, but the last one resulted in a trip to the emergency room, a chest x-ray, antibiotics, oral steroids and breathing treatments for 10 days. We'd like to avoid doing THAT again soon!

I promise a picture and a post on February 26, 2010. It's the very least I can do to thank Andrea's fan club.

"God will not permit any troubles to come upon us, unless He has a specific plan by which great blessing can come out of the difficulty."
Peter Marshall