Thursday, December 31, 2009

An Ending, and a Beginning

I can't believe it's New Year's Eve, 2009, as I sit here and type this. In no way was this past year anything like we expected. We certainly can't complain about the outcome, but all in all, we've lived a lifetime of stress, anxiety, worry and fear in the last ten months. Tonight, we will celebrate the end of this era with relief that all is well, and look forward to a more normal life (we hope) in 2010. We quietly marked the passing of Andrea's 10 month birthday on December 26. In all the celebrating, I never got a chance to post on the day. On December 25, we amazingly celebrated her first Christmas. Santa and her family were very generous.

I haven't posted much in December, because we have been blessed with a relatively normal month. Andrea had her 9-month check up at the beginning of the month, and has been getting her required vaccines slowly ever since. As I posted earlier in the month, she's been eating cereal every day, and we're going to start adding vegetables next week. Since there's nothing much to report, I decided to end the year on a December photo shoot. I'm showcasing a bunch of pictures of Andrea from the past month, along with some quotes. If you've been a blog follower, you know I love my quotes!

I return to work on January 4, nearly a full year after I ran out in a panic because of the pregnancy complications. I will continue to post as events warrant, and I hope people will continue to follow Andrea's story. Comments to the blog, and emails to me ( are always appreciated.

“In all things it is better to hope than to despair”
Johann Wolfgang von Goethe

“Dum spiro, spero (Latin), "While I breath, I hope"”
Philemon, Latin Proverb

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”
Dale Carnegie

“What would life be if we had no courage to attempt anything?”
Vincent van Gogh

“He who has health, has hope. And he who has hope, has everything.”

“Hope is the pillar that holds up the world"

“Hope is knowing that people, like kites, are made to be lifted up”

“Hope arouses, as nothing else can arouse, a passion for the possible.”
William Sloan Coffin

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.”
Anne Lamott

“I do the very best I know how, the very best I can, and I mean to keep on doing so until the end”
Abraham Lincoln

"The difference between the impossible and the possible lies in a person's determination."
Tommy Lasorda

“I count myself in nothing else so happy
As in a soul rememb'ring my good friends."
- William Shakespeare

"You can do what you have to do, and sometimes you can do it even better than you think you can."
Jimmy Carter

Happy New Year to all.... with all our love!

Friday, December 11, 2009


On Wednesday, Andrea had her rescheduled "well-baby" doctor's visit, along with her monthly RSV vaccine. We are pleased to report that her development continues to be normal, with her developmental milestones being reached at the tail end of the accepted ranges. One thing we had postponed for a while was the introduction of solid foods. It was the advice of the NICU nutritionist that we hold off until six months or so. (Doctors recommend introducing solid food between 4 and 6 months). Andrea's well-baby visit was her 9-month check up, but she is developmentally 6 months. So, Wednesday night she got to enjoy some Gerber Rice Cereal at dinner. I have captured the moment in today's picture. She seemed to enjoy the experience, and ate pretty well. Last night, she had more, and devoured the whole bowl, except for what wound up in her hair and up her nose. Since she tends to have skin issues, we are adding foods slowly. We'll do the rice cereal for two weeks, then try oatmeal for another two. After that, we'll branch out into the fun-filled world of other baby foods.

Next week, Andrea gets her second H1N1 vaccine, and we begin the process of her 9 month vaccines. The doctor is amenable to continuing to space them out, one a week until she gets them all. I also learned something interesting from a physician's assistant. We had been giving Andrea a dose of Tylenol after each vaccine to ease the discomfort. Apparently, research shows that children who do not have Tylenol after vaccines have better antibodies than children who take it. So, unless she runs a fever, we have to just try to stick out the crabbiness that goes with the shots.

Yesterday, Andrea saw her pulmonologist for a follow-up to her most recent illness. For the first time (ever, I think) the doctor said her lungs sound GREAT! This is a HUGE deal, as most of her problems stem from crummy lungs. The doctor gave us clearance to try her off the oxygen for some time over night, as long as she stays on the PulseOx so we are aware of any problems. Before we can try that, though, we're waiting for the oxygen company to come out and reset the PulseOx meter. It is set to alarm any time Andrea's heart rate drops below 80 beats per minute. When she came home from the hospital in June, she was almost 8 pounds lighter, and her normal heart rates were much faster. Now that she's bigger and older, the doctor said a rate in the 70s is not unusual when she's in a deep sleep. A few nights ago, we had 2and a half hours of alarms, because she was sleeping so deeply and her heart rate was hovering between 78 and 82. One thing we've learned about using oxygen in the home is that you need a prescription for EVERYTHING. I called yesterday to get the monitor reset, and nothing can happen until the doctor's office sends an updated prescription. Apparently, this was something I was supposed to know. Granted, I know more now about all this stuff than I ever hoped to, but still, it seems like someone should be more on top of helping us out.

In January, the pulmonologist will have us in for another sleep study, to take a close look at what really happens when Andrea sleeps. If all goes well, she might be off the oxygen completely by her first birthday. It's a good thing that no one told me up front that this would be our lives from June until February. I think I would have had a nervous break down. However, I reserve the right to fall apart as soon as all this is over. It has been a long haul, and I'm grateful so many of you are still along for the ride. It helps us feel less lonely.

Out of difficulties grow miracles. Jean De La Bruyere

Thursday, December 3, 2009

One Labor-Intensive Baby!

Poor Andrea has had skin rashes on and off for several weeks. When she's on the oral steroids (Orapred) for her asthma, the rash clears up. Once she's off the medication, it flares up again. At every doctor's visit, we were given another "solution" to try. For the really bad areas, we were told to use an over-the-counter cortisone cream. The rest of her, we just slathered in lotion. First, Johnson's Baby Lotion, then CetaPhil, then AquaPhor. Nothing worked very well, or for very long. So, at her last well-baby visit, the doctor suggested we take her to a dermatologist. Andrea and I had THAT appointment earlier this week.

Basically, the poor thing has eczema over most of her body. The treatment is a major time commitment! We have prescription cortisone ointment for most of her body. (Not on the face or hands) This gets applied twice a day. We have a prescription foam for her hair, used every night in the bath. In between, we have to lotion her up with AquaPhor "as often as possible". While in the bath, we have to use soap without alcohol - not easy to find in a liquid. Also, no wash cloths, loofahs or sponges.

On top of the skin regime, Andrea is taking Orapred and Flovent twice a day and breathing treatments every 4 to 6 hours. She's still very congested from her illness, so we have to suction her out often. We use a disgusting contraption called a "Nose Freida", (Google it up if you want details) which works well, but Andrea truly hates.

Despite all the procedures, Andrea has retained her usual disposition. Meaning that one minute she's happy as a clam, and the next instant she's a demon child. The NICU nurses told us that she survived because of her forceful personality. We're trying to convince her that she can lighten up a little, now that she's home!

Andrea is making great progress with her strength. She can pull herself up to a standing position if we hold her hands. She rolls ALL OVER THE PLACE, meaning we can no longer leave her on the couch or bed. Even if we're right there, she's too fast to be safe. She's working on the balance needed to sit up. You can see in today's picture that she's getting there. We actually propped her in the corner of our couch, which provided enough support that she could hold herself up for a bit.

Andrea has a wonderful family. Her outfit in this picture was an early Christmas gift from her Aunt Teeny and Uncle Stephen. Aunt Teeny has a 12-year old daughter, a son, and 6 nephews, so it's been a LONG time since she was able to buy things for a baby girl. Those of you with children know that girls' clothes are WAY more fun than boys' clothes. So, for the next few pictures, you'll see Andrea's fashion show, courtesy of Aunt Teeny and Uncle Stephen.

"Life is not about waiting for the storms to's about learning how to dance in the rain." Anonymous