Sunday, November 7, 2010

A Long Overdue Update

I know many people check in periodically to see what's going on in Andrea's life, and I'm sorry for not posting in so long. Our lives are insanely busy, and there's precious little time left over. On the up side, Andrea's life is fairly typical, so there's less to report.

Halloween was a bunch of fun... We went to a local farm with all the kids for some pumpkin picking. So far, Andrea is NOT nature girl. There was too much grass, dirt and hay for her liking, but she tolerated the fields long enough to get a pumpkin, and to let me take this picture.



Andrea wore her same giraffe costume from last year. It's funny, because it was a little big last year, and a little small this year. In the picture below, she's eating the one piece of trick or treat candy she got to keep. A KitKat. She wasn't sure at first if she liked it, but by the second bite she was a fan. Kenny George was a good sport and let her kind of tag along with him as he went around with his friends. She didn't make it to many doors, but I think she enjoyed being out with her big brother.



On Halloween, Andrea finally figured out the walking thing. She had taken a few toddling steps here and there before, but not with any consistency. For some reason, it all clicked on Halloween, and she's been walking more and more each day. She still looks like she's been drinking more than milk in her bottles, but she's getting better as she practices. We had her at the New York Aquarium yesterday, and she was able to enjoy the tanks on her own two feet. Ken got some video on his phone, which I'll have to post once he sends it to me.

Andrea had her first trip to the dentist on Friday. She has all of six teeth, although the dentist says that she should have 4 or 5 more before her next visit (in 6 months). You know I rarely plug businesses, but the dentist we see is AWESOME. It's Sparkles Dentistry in Montclair, and they are a pediatric only practice. I've been taking Kenny there for about a year, and Dr. Matthais is wonderful. It's the first time I've been to a dentist where she asked questions about the patient besides her teeth. Of course, Andrea HATES having anyone poking around in her mouth, so she wasn't overly cooperative with the exam. You can see her on the exam chair in this picture.



The last picture, below, is my current favorite. For some time, Andrea has been wanting a baby doll. She has a few that are like rag dolls... soft bodies and sewn on clothes. She got a Cabbage Patch doll for her birthday, which is in her closet until she's old enough for it. (Ages 3 and up) Still, every time she sees it, she points and reaches for the box. So I finally got her a doll, appropriate for ages 18 months, and she loves it. We've named her Sarah, after my niece in North Carolina. Andrea likes holding Sarah's pictures, and Sarah likes hearing about Andrea, so it seemed appropriate. Anyway, in the picture below, Andrea is holding baby Sarah, and the doll is wearing one of the preemie outfits we bought for Andrea when she was still in the hospital. The most amazing thing is that the clothing really fits the doll well, and it's quite a small doll. At her last doctor's visit, Andrea was 29 inches long and 19.5 pounds, so she's not a big girl for her age. You can see how small the doll is in comparison. We vividly remember how excited we were when Andrea was able to wear clothes in the NICU, and how big we thought she was. Perspective is everything.



"Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared."

- Buddha

Tuesday, August 31, 2010

A Mighty Fortress is Our House*



The summer has passed in a blur - and what a change from last year. All things considered, we managed to be out and about a lot last summer, despite the oxygen tanks and monitors. This year, we didn't have to drag the paraphernalia, but we did have an almost toddling, strong-willed girl who made everything challenging. We spent much less time at the town pool because it was almost impossible to keep Andrea from drinking the water. She loves swimming, but doesn't know enough to keep her mouth closed or her face up. As a result, I was a nervous wreck every time she headed toward the pool.

Andrea has not yet mastered walking - in fact, she still falls down when she lets go of whatever is supporting her. However, she's a speed demon in cruising, and loves crawling, and we've had to install baby gates throughout our house. There's one at the top and bottom of each set of stairs, plus one between the kitchen and living room and between the kitchen and dining room. There is nothing wrong with Andrea's brain, and we've had to opt for the kind of gates that are fastened to the wall. When we used the other kind, Andrea was actually able to circumvent the gate and head up the stairs.

I think Andrea is making progress in the speech department. She's making more sounds that sound like words. She's got a word for "giraffe" (of course) and will repeat animal sounds. She has a "woo-woo" for a dog, and "tee-tee" for a bird. I think we've got "star" down as "tar", but I'm not 100% sure. She does call me MaMa, but not consistently. Still, we're making progress. Given that the rest of the family are major talkers, we figure she'll catch up soon.

Today's picture is just a cutie that I wanted to share. Andrea has a beautiful rocking chair made by "Uncle Pete" for her first birthday. You can't see its detail in the shot, but it's got a giraffe on the back, and the arms and rockers are painted in jungle leaves and lady bugs. The work is amazing - there's a stuffed monkey sitting on one arm, and her name in glitter letters down the back. Andrea's new favorite game is to climb in and rock herself. We store her "soft friends" in the seat, so the fun begins by pulling everyone off and using them as stepping stones.

* A Mightly Fortress is Our God - Martin Luther

Tuesday, July 20, 2010

Amazing Andrea



Andrea likes to sit in the laundry basket. She likes it even more if the clothes are clean and folded. Then she throws them onto the floor!

Yesterday, we finally had another visit to the Developmental Clinic at Robert Wood Johnson Hospital. Andrea was supposed to be seen there in March, but had an ear infection, so the doctor cancelled her appointment. This was the first time she was there since October 2009, so there have been considerable changes.

At Developmental Clinic, Andrea is seen by Speech Pathologists, Physical Therapists and Neonatologists, who compare Andrea to other (full term) babies based on her corrected age. That means that everyone was looking to see how close Andrea was to a full term 13-month old baby. The thing that was so interesting is that I think Andrea knew she was being assessed. She was at her most charming, smiling and cooing at everyone that came to see her. She was very attentive, and performed all the tasks she was asked to do.

We were expecting a few areas of delay, but she's not as far behind as we dreaded. The deficits are minor, and are in speech and gross motor. Right now, Andrea does not say anything that is recognizable as a word. She does say "DaDaDaDa", but she uses it for many things, not just Ken. A 13-month old baby is expected to have a few words. The other thing that Andrea doesn't do is walk. Now, many babies aren't walking at 13 months, but Andrea is a little further behind than expected. No one was especially worried about these slight delays, and we left with strategies to help her along a little.

Andrea also had a cognitive assessment, to see how her brain is functioning. Now, for a long time we've felt that she's smart beyond her age, and the doctor confirmed that. The first thing the doctor asked her to do was put a peg into a hole. (She modeled for Andrea, since we're not up to following directions yet.) The doctor showed her once, and then Andrea immediately repeated it. She was then given another peg, and on her own put it in the hole. Then the doctor had a ring with a string on it. She dangled it in front of Andrea, and Andrea grabbed the string and used it to "reel in" the ring. The doctor was quite pleased at Andrea's problem solving processes. There were many other tasks she was asked to perform, and the doctor went beyond what would be expected from a 13-month baby to see where she really fell. Well, cognitively, Andrea is 15 months old! WooHoo!!!

The only other finding from the doctors is that Andrea is small for her age. This did not come as a shock to us! She has made up a lot of ground, but still has a way to go. The doctor told us that we might want to consider HGH (Human Growth Hormone) in a few years, if she doesn't catch upon her own. It's not something we need to do now, and it's good to know that the option is there if we need it.

In other Andrea news, she finally has more teeth! She's had the bottom center two for a while, and now the top two (to the sides of center, HAH!) have finally broken through. Once they're out, she'll have fangs!

“The person determined to achieve maximum success learns the principle that progress is made one step at a time. A house is built one brick at a time. Football games are won a play at a time. A department store grows bigger one customer at a time. Every big accomplishment is a series of little accomplishments.”
David Joseph Schwartz

Monday, July 12, 2010

Andrea the Brave...



We are so fortunate in that there has been very little to report in the world of Andrea. I know people want updates, but for the most part, there is nothing going on that is out of the ordinary. Who would have thought that we'd be saying that about Andrea? A year ago at this time, we were trying to come to terms with life on the apnea monitor and PulseOx. Now, we're contending with baby gates in not one, but four locations in the house as Andrea climbs the stairs and basically gets into everything she shouldn't.

Last week was a week of doctor's appointments. We had Andrea's 15 month physical (those are scheduled based on her actual, not corrected, age) a pulmonology appointment, and a follow-up hearing test. The physical went well, although at this age there are always vaccines. We know they're important, but we hate to see Andrea so enraged, LOL! The pulmonologist was pleased with the way Andrea's lungs sounded, and we don't need to go back until October, if she stays healthy. The hearing test was the most interesting. Andrea had a hearing screen before being discharged from NICU, but I wasn't there when it happened. This time, I got to watch. The doctor had me sit Andrea on my lap in a sound booth. (I felt like I was on a game show!) The doctor then spoke to Andrea from outside the booth, and the sound came through speakers on either the right or left side. If Andrea turned her head to the correct side, a box lit up and she saw either a stuffed dog or pig making sounds. The doctor progressed from speech to tones, and each time Andrea turned toward the sound, she got the reward. Fortunately, Andrea did well on the test. Her hearing is adequate for speech and language development. I learned from the audiologist that some of the preemie medications can cause hearing loss. We're not in the clear, but she doesn't need to be retested until she's three.

One of the things we're enjoying this summer is finally being able to go places with Andrea. (Although it's a challenge to travel with her.... we have to bring so much baby stuff!) We've been able to spend a day at the NJ shore, travel to Connecticut for a family wedding, and make trips to the town pool, where Andrea is able to splash in the baby pool. Last summer, we went to the pool with the boys, but Andrea was allowed nowhere near the water, and we left her with my parents to take day trips with the big guys. Now, she can be a part of all of it.

Our most recent adventure was a trip on Saturday to the Bronx Zoo. It was a cloudy, overcast day, which is great for seeing the animals. They're more active when it's not so hot. This time of year, there are usually lots of baby animals, too. We saw the "adolescent" giraffe that was born there last year, along with this year's crop of monkeys, cattle, sea lions, birds and so on. The most interesting thing, and the reason for today's title, was Andrea's response to the animals. She was quite interested in everything she saw, and we could see her eyes following the animals as they moved around their enclosures. She rode the "Bug Carousel" and watched the butterflies in the Butterfly Garden. Nothing intimated or upset her until we got to, of all places, the Children's Zoo. For those of you not familiar with the Children's Zoo, it's a place within the main zoo where kids can experience some of what animal life is like. They sit in giant birds' nests, climb in prairie dog burrows, wear tortoise shells, climb a giant spider web and so on. At the end, there is a barn yard with farm animals for feeding; the usual assortment of cows, pigs, goats, fowl and sheep. After all we went through, the one thing that made Andrea absolutely hysterical was... the sheep! Among the cutest animals in the area, they had the audacity to bleat when we were there, and Andrea burst into tears. Actual heart wrenching sobs of terror! It was so bad we actually left the barnyard and moved on to another area of the zoo. So, go figure... she's had more transfusions, IVs and shots than most adults, endured months on oxygen tanks and monitors, will happily be thrown through the air, but cannot abide by sheep! LOL!

Next week, we have Developmental Clinic in New Brunswick. This will be her first appointment there since October 2009. She had an ear infection for her March visit, and the doctor didn't want her coming in. I hope the doctors will be pleased. We think she's come so far, and seems pretty on-track to us. As before, the doctors will assess her against full term babies and recommend early intervention if necessary. I'll try to post after clinic with the doctors' updates.

“We should come home from adventures, and perils, and discoveries every day with new experience and character”
Henry David Thoreau

Sunday, April 25, 2010

March for Babies



I know it's been a long time since I posted. So much has happened that I want to write about, but I probably won't get to it tonight. One reason I haven't been posting too often is that we're really living a fairly normal life right now. Andrea is pretty much an average baby. The bigger reason I don't post is that there just aren't enough hours in the day.

I had an interesting experience today. I participated in the March of Dimes "March for Babies" in Piscataway, NJ. I spent the walk last year sitting next to Andrea's isolette in the NICU. The original plan for today was to bring Andrea along for the walk, but the weather was awful. After all we've been through, we didn't want her to get SICK!

The reason I found the walk interesting is that it drove home haw many people have stories similar to ours. I didn't meet anyone else with a 15 ounce baby, but the majority of walkers have some connection to a preemie baby, all with their own dramatic stories. I walked for a while with a woman born 10 weeks early thirty years ago, at a time when most hospitals didn't have a NICU. I met parents of a 24-week boy who was born only a few months before Andrea. Despite the fact that he was almost twice her size at birth, his recovery hasn't been as smooth as Andrea's. It's hard to hear the sad stories. It makes me even more grareful for our happy outcome, amazed that we were, and continue to be, so lucky, and sorry for the parents who have ongoing challenges that we can't even imagine. Even worse are the families who lost their babies. I can't begin to know how you go on after such a loss.

I was able to connect with some of Andrea's NICU nurses, and show them her most recent pictures. Life has gone on for the personnel in the NICU, and it was interesting to see that no one remembered me by name. I was recognizable as “Baby’s Zimmerman’s Mommy”, or “Mommy Zimmerman”. No one who met Andrea back then will likely ever forget her, but other babies have moved into her spot (hallelujah!) and we’re not in the forefront of anyone’s minds. What a blessing that was!

In other Andrea news, she has finally decided she’s ready to crawl. She actually began crawling in earnest the week after Easter, but would slip and drop onto her tummy, especially on our hardwood floors. Now, all bets are off! She is a speed demon, and has to be watched every second! She loves to crawl over to the electrical wires and try to chew on them. She also has awesome eyesight – she finds every speck of lint on the floors and puts it in her mouth. She’s working hard on pulling up into a standing position, too. She’s been able to get onto her knees, so I’m sure it’s only a matter of time before she works out the next piece.

Andrea has been teething for a while, and has cut her bottom two teeth. She is very stingy about showing them off… if we pry her mouth open, she’ll stick her tongue out to hide them. I keep trying to get a picture, and she won’t cooperate.

"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.” Pablo Casals

Monday, March 8, 2010

Too Much Partying

This past Saturday, we celebrated Andrea's first birthday and Ken's 50th. (He probably would have preferred I didn't mention that, but it's my blog, and I proudly announced my 40th last year, so too bad!) We had a small, family-only party, since it's still not a good idea for Andrea to be around crowds of people. I have to say, the whole event went better than we could have hoped for. We opted for a catered meal, held in the parish hall of the church where Ken and I got married.

I have to mention the two vendors who provided the food. Our meal was catered by “A Family Affair” catering in Fair Lawn, NJ. (http://www.afadeli.com/) The storefront is misleading, as it’s the tiniest little place. However, the food was AWESOME, and we could have fed an army on what was left over. We sent leftovers home with everyone, and we still got three or four more meals for ourselves. The people we dealt with could not have been nicer, even going back to the deli to get us extra plates and utensils for our hors d'oeuvres. If you’re in need of a caterer in Bergen County, at least check them out. The prices were incredibly reasonable, and as I said, the food was awesome. (And no, I am not getting paid for the endorsement, LOL!)

Many of you know that one of my claims to fame it making the cakes for all the kids’ birthdays. I’ve been doing this since my niece was born almost 13 years ago, and the kids have learned to count on Mom (or Aunt Tori) to come across with the goods. Well, for the first time ever, I BOUGHT a cake for a party. I had my heart set on a giraffe (for Andrea, of course) wearing a Yankees baseball cap (for Ken). This is way beyond my abilities, so I hired Kimmy, of Kimmy’s Kakes (http://www.kimmyskakes.com/) who gave me what I was looking for. The cake is actually on her web site in the kids’ cakes section, but I posted my own picture here. Kimmy made a delicious cake, and even delivered for me, so I didn’t have to try to transport a 3-d giraffe along with 50 helium balloons and two kids. Like the meal, we could have fed another hundred people on the leftovers, but it was too cute for words and worth the cost.



Ken didn’t know that he was one of the guests of honor at the party, so we had an interesting theme. I went with an animal/princess theme for Andrea and a 50th/Baseball theme for Ken. I had a baseball piƱata, to the delight of the bigger kids. Andrea happily spent the day being passed from one relative to another. We’d brought her exer-saucer to give her some down time, but she mostly preferred to be carried around like a princess. Her dress was an Easter gift last year, while she was still in the hospital. I promised the givers that she would wear it as soon as it fit, and so she did!

Even though Andrea is officially one, she’s developmentally a nine month old baby. She’s been eating some solid foods, (Cheerios are still a favorite) and she’s thinking about crawling, but hasn’t worked out the logistics yet. As when she was in the NICU, she does everything in her own time. We’ve learned that she can’t be rushed, and that she’ll get there when she’s ready. Still, a year ago we couldn’t imagine this day would ever come.

“Your birthday is a special time to celebrate the gift of 'you' to the world.”

Friday, March 5, 2010

The End of an Era



Andrea had an appointment with her pulmonologist today - her first "well"visit there in months. She's been seen there with a variety of illnesses, but hasn't been healthy for a visit since early fall. It was also her first visit since the doctor took her off oxygen over night. I have to say, it was a wonderful appointment! Andrea now weighs 15 pounds, 11 ounces, and is 25.8 inches long. She is rapidly approaching "normal" size for a full term baby. The best news of the day was that her lungs sounded clear, and the doctor told us we can stop using the PulseOx monitor over night!!! This thing has been a trial - every time Andrea turned over in the night, the monitor would alarm, and we would have to get up and check on Andrea. Tonight, for the first time in her life, Andrea is sleeping with nothing attached to her body. We will probably be more anxious over night for a while, but we are excited about this next phase.

In other news, Andrea's first tooth broke through yesterday. You can't see it yet, but we can feel it, and the doctor saw it when he looked in her mouth with a light and a tongue depressor.

"Free at last! Free at last! Thank God Almighty, we are free at last!"
Martin Luther King, Jr.

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.

video

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.

video

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


Tuesday, January 26, 2010

Eleven Months Old Today

As of 5:29 p.m., Andrea is celebrating 11 months of life. Over the last few posts, I've been writing about how much this experience has taken out of us. Whenever we have a milestone day, I can't help but relive every moment that led us to this point. I sill vividly remember being in the NICU during rounds and hearing the residents report on Andrea. "Baby Zimmerman, x 26 weeker, today is day X of life". In the beginning, we clung to every single day - grateful to have made it that far, afraid to believe that she was going to be OK, but equally unwilling to contemplate the alternative. Now, here we are on 334 of life, still marveling at our good fortune.

We don't have another developmental clinic until March 1, so we're sort of on our own for how Andrea's doing. She sees her pediatrician with incredible frequency because of all her vaccines, so we have a pretty good idea of how she's faring. She has been thriving in the "Grammy & Pa" day care situation. She gets way more floor time there than she does at home. Andrea loves being on the floor. She rolls all over the place, and is pushing up on hands and knees more and more often. She is loving baby food, now that we've stopped trying to make her eat peas. Sweet potatoes and carrots went down well. We're going to give her fruit this weekend. We figure we've forced enough vegetables on her already for now. We've also started giving her Cheerios. She can pick them up herself, but can't get them into her mouth. Still, if we feed them to her, she likes to gum them.



"Faith is not believing
that God can,
It is knowing
that God will."


Today's quote came to me today in an email from my friend Janice. It seemed appropriate.

Thursday, January 21, 2010

525,600 Minutes



Ken and I are big Broadway fans, although we don't get to see shows nearly as often as we'd like. To be honest, I don't even remember the last thing we did see together... it may have been Spamalot, but I won't swear to it.

One show I wanted to see, but we didn't get to, was Rent. The music was always so catchy when they ran commercials. One song is entitled Seasons of Love, and it has one of those tunes that gets stuck in your head. I could only ever understand a few of the words, but the ones I did get hit me hard. Here is some of it.

"525,600 minutes, 525,000 moments so dear. 525,600 minutes - how do you measure, measure a year? In daylights, in sunsets, in midnights, in cups of coffee. In inches, in miles, in laughter, in strife. In 525,600 minutes - how do you measure a year in the life?
How about love? How about love? How about love? Measure in love. Seasons of love."

So, why this song, and why today? Well, Andrea's whole saga really began a year ago today, January 21, 2009. On the 16th, Ken and I, with Mom and Dad, set out for what we thought was going to be a "routine" 20-week ultrasound. On the plus side, we learned we were expecting the little girl we were hoping for. (Already having a pair of boys) On the other hand, the doctor was extremely concerned about the size of the baby. Instead of a "20-weeker", she was closer to 18. We went from elated to terrified in minutes.

It was the recommendation of the doctor and geneticist that we have an amniocentesis to rule out potentially fatal genetic problems. After talking with everyone, and much soul-searching, we opted for the test. I have to admit, I have heard horror stories about amnio. I'd rather not have one again, but it's not the worst thing I've ever been through. The spinal block before the c-section was more painful. The doctor got the fluid he wanted, and sent us home with orders to rest for the weekend and be careful about lifting or moving things.

All seemed positive - especially when the geneticist called Tuesday with preliminary results showing that things looked mostly good. No scary fatal problems. It all fell apart on Wednesday, January 21, 2009. I was at work, still being sort-of careful, not doing any heavy lifting or moving, when I felt something wet. I called the doctor's office, and was told to come right in. I left my school in tears at 1:30 in the afternoon, and didn't come back until almost a year later.

That was the beginning of the most stressful, anxiety-producing year we have ever lived through. In the doctor's office, they discovered that I was indeed leaking amniotic fluid. There is nothing that can be done for this, except to take it easy and pray. I went home, put my feet up, drank gallons of water every day, and tried to stay positive. A week later, we were back for another ultrasound and discovered that the fluid was coming back, at least a little. We went on this way for 5 weeks - one ultrasound at a time - until February 24, 2009, when the doctors felt I needed to be in the hospital until Andrea's birth. For better or worse, that hospital stay was much shorter than I'd anticipated. Less than 50 hours after I was admitted, Andrea was born.

So, how did we measure the year? Just like in the song..."In inches, in miles, in laughter, in strife." We got through parts of it, literally, minute by minute. Late evening phone calls struck terror into our hearts. In the NICU, every day of Andrea's life was acknowledged and celebrated. We had very few setbacks, and she proved herself to be a fighter. When we learned that she would, indeed, be coming home, we were in a state of shock. We never allowed ourselves to believe differently, but it seemed like too great a gift to actually accept.

Now, here we are, 525,600 minutes since the odyssey began, and we have a normal, healthy 7 1/2 month old baby (her corrected age). She rolls all over the place. She almost sits up unassisted. She pulls up, locks her legs and stands if we help her balance. She eats baby cereal and foods, and even gets the spoon into her own mouth. She can hold her own bottle, but tends to be lazy about it. She reaches for things she wants, and shoves most of them in her mouth. She pulls my hair - something Kenny did as a baby that caused me to cut it all off... we'll see how much longer I last. She watches everything, and misses nothing. She laughs. She babbles, blows raspberries and sticks out her tongue. She loves her brothers, and they love her. What more could we ask for?

To help others have the same happy, blessed, fortunate outcome we had, I am participating in the March of Dimes "Walk for Babies" on Sunday, April 25, 2010. Andrea will be with me, celebrating her life. If you have been moved by her story and would like to support my efforts, please click to donate. If you decide to donate, please take the time to read what I've posted on my personal page at the March of Dimes. Some of it is redundant, but some is pretty meaningful, and it explains why I feel so strongly about participating. Whether you choose to support me or not, please consider forwarding this post to your email contacts. I'm hoping to raise $1,000 - so I need 100 contributions of $10 each, or ten contributions of $100 each. (Or one of $1,000... LOL!) Seriously, every penny helps, and it's those who supported the research in the past that allowed for our miracle to be here today.



As always, we thank everyone for their support - emotional, physical, psychological, material.

"We give thanks to God always for you all, making mention of you in our prayers." 1 Thessalonians 1:2

Tuesday, January 12, 2010

A Silent Night at Last

Nothing new to report, but I had to post about Andrea's first night ever with no breathing support. I really think she slept better, or at least more comfortably, without the nasal cannula. It wasn't usual for us to have half a dozen false alarms in a night, almost always caused by Andrea moving in her sleep. When she's active, the PulseOx doesn't make good contact with her foot, and the machine alarms. We always responded to the alarms, even when we were convinced all was well. Last night, there was one false alarm, and it stopped even before we could get out of bed and investigate.

Since we don't have to worry about Andrea wrapping the cannula around her neck, we were able to leave her upper torso unswaddled last night. It was the first time her hands were free, which was probably a more comfortable way to sleep as well. We will continue to swaddle her from the waist down to minimize the likelihood of her getting the PulseOx cord wrapped around her neck!

When we were discharged from the hospital in June, no one gave us any idea of how long Andrea might need oxygen support. I think the doctors might have suspected that we were looking at 6 months of it, but wisely kept that to themselves. We have been waiting for this moment for so long; it seems unreal that we're finally here. Through it all, we have tried to remain positive and optomistic, and to have faith that this day would come. Thanks be to God, it finally has.



“To one who has faith, no explanation is necessary. To one without faith, no explanation is possible.”
St. Thomas Aquinas

Monday, January 11, 2010

Big News!

I got the best phone call today, all the more exciting because it was completely unexpected. Andrea's pulmonologist called with the results of her sleep study. I was expecting to hear the news at an appointment next week.

To cut to the chase, Andrea is OFF THE OXYGEN! Her saturation levels stayed pretty steady in the 97% range over night. The lowest she dropped was still only 90%, and that was for 41 seconds.

It is the recommendation of the doctor that we continue to use the PusleOx meter for the next month to make sure all is well. This is a mixed bag, because it's the monitors that have caused the lost sleep since Andrea came home. However, we will have peace of mind, knowing that we'll be alerted if something goes wrong in the period of time while her body adjusts to being unsupported by the concentrator. Despite the anxiety of giving up the oxygen, we are thrilled. The concentrator is an extremely noisy machine. The drone it makes all night long is a sound we will happily do without.

Tonight's picture is the first (of many, we assume) of Andrea sleeping without the oxygen cannula. Her poor cheeks are a mess from the months of TegaDerm, made worse by the fact that she spends most of her time tearing the tape off her face. We are looking forward to giving her a chance to heal. Andrea has always liked sleeping on her belly... it was one of her favorite positions in the NICU. Now, between being able to roll over, and being off the oxygen, you can see her happily snoozing on her tummy!



I haven't said it in a while, but Thank You for all the prayers and good wishes that have brought us to this point.

"There is no telling how many miles you will have to run while chasing a dream." Author Unknown


"One may go a long way after one is tired." French Proverb

Saturday, January 9, 2010

News in the New Year

I know it's several days into 2010, but I went back to work on January 4, and it's been an adjustment, to say the least. On the plus side, it's been wonderful to see all my Demarest friends. The entire district was so supportive since day one; I was happy to get back to school and thank everyone personally. Also on the plus side, Mom and Dad are watching Andrea while I work, so she's spared having to be in a day care setting. The biggest problem with day care is that kids are exposed to so many germs. This way, we're minimizing the exposure for Andrea until she's bigger and stronger. On the down side, I need to be up at 5 every morning so I can get Kenny off to the bus on time, drop Andrea off at my parents' and still get to work without being horribly late. Needless to say, I'm feeling a bit tired now!

In addition to my return to work, it's been a busier than usual week. On Tuesday, Andrea saw the dermatologist for a follow up to her December appointment. Her skin continues to be a challenge. She is rashy over most of her body, and as a result, is very itchy. We had been using a prescribed cortisone ointment, but were limited in how long we could keep her on it. The doctor gave us a milder cream that we can use for longer periods of time, and also prescribed Singulair, which Kenny takes for his asthma. Interestingly enough, the Singulair will not cure the rash, but it will make her less itchy. We started it on Wednesday, and she seems more comfortable already. It's very fine powder, which we mix in her food. And speaking of her food, we have begun to branch out from cereals. So far, she had been through rice, oatmeal and barley cereal (the last was not a huge favorite) and we started her on sweet potatoes this week. She LOVES sweet potatoes! It is the only thing she's eaten so far that she never spits out. Because of her skin issues, the dermatologist recommends a full week on each food before trying a new one, so she's been having sweet potatoes twice a day since Wednesday. Next week, we're trying peas, which should be good for a photo op!

Tuesday night, Andrea and I were overnight in the hospital for a repeat of her sleep study. The pulmonologist is highly motivated to get her off the oxygen over night (as are we!) so we tried again to see if Andrea's O2 saturation levels stayed good all night. It was an interesting experience, especially compared to the last time. When we went in the fall, Andrea couldn't roll over yet, so once she was connected to the machines and swaddled, she had no choice but to go to sleep. NOW, she can roll from back to front and front to back, so THIS time was another type of experience completely. Once she was on the leads, Andrea proceeded to work very hard to pull anything and everything off. The technician made several trips in over the course of the night. We get the results when we see the pulmonologist on January 22. We HOPE that all went well, since we are very tired of oxygen and monitors.

On Thursday, we were back at the pediatrician for this month's RSV vaccine and the last of Andrea's 9 month shots. She's done now until February, when she gets yet another RSV vaccine. She doesn't need any other vaccines until she's one. Between RSV, regularly scheduled shots and flu vaccines, it's been a rough few months.

Exciting news from Thursday's doctor's appointment - Andrea now weighs 14 pounds, 15 ounces (a gain of 14 pounds since birth!) and measures 24.4 inches. She actually gained 14 ounces in a bit more than 2 weeks, so apparently solid food agrees with her.

The response to this blog has been overwhelmingly positive, and many people have suggested that we have it published. Well, I'm in the process now of trying to find a way to do just that. Of course, it's always possible to print copies as they are, but we'd love to have a real book of all this. Should that project ever get off the ground, I'll share the word.



“Because a thing seems difficult for you, do not think it impossible for anyone to accomplish.”
Marcus Aurelius