Saturday, September 26, 2009

Seven Months Old and Completely Average!

Well, as of 5:29 p.m. today, Andrea is celebrating seven months of life. (She'll be 4 months corrected age on October 4.) We saw the doctor on Wednesday for the first of many flu shots and other vaccines, along with a well baby check, and I'm pleased to report that Andrea is absolutely average. She's in the 50th percentile for head circumference, height and weight, and those numbers are for a full term baby! When Andrea was born, she was so small that her length was charting on the head curve, (of a preemie growth chart!) so the fact that she's made it all the way into the middle of "full term" babies is a miracle in and of itself.

We are anxiously awaiting the pulmonologist's appointment coming up this Friday, and the Developmental Clinic appointment in early October. Andrea has decided she's done with oxygen. We find ourselves retaping the cannula at least half a dozen times a day. She can have time off, and we take full advantage of those breaks, but the doctor wants her to be on the oxygen over night and for at least some time during the day. We have tried something called "Tender Grips" which were recommended by a preemie parents' web site I found (and which cost more than $5 EACH!), and she managed to get those off too. Later tonight, we're trying something called "duoderm", which the pulmonologist recommended. It won't stop her from pulling off the tape, but it should spare her skin from more damage.

I try very hard to not complain, especially in this blog. It is supposed to be a place where we celebrate the miracle that is Andrea, and where I keep the interested populace apprised of her progress. And don't get me wrong - we are constantly grateful that we have the wonderful outcome we do. However, the past few days have been almost impossible, and I'm worn out. Yesterday and today, the only way I could get Andrea to nap was by taking her for a long ride in the car. We think she may be starting to teethe, since she's shoving whatever she can into her mouth, but it's still been a rough time. Ken has her now, so I can get a few minutes peace, and she seems to be sleeping for him. She saves the crabbiness for me, I guess.

I'm not sure I'll get another post in this week, but I will make sure to update the world after Friday's doctor's appointment. One day this week, we'll be going for a chest x-ray, so hopefully all will be improved with Andrea's lungs. As always, thank you for continued support and prayers.

“Don't pray for lighter burdens, but for stronger backs.” Anonymous

Tuesday, September 15, 2009

Roll Over, Roll Over...

When we were little, we used to sing "There were 5 in the bed and the little one said 'roll over, roll over'". I'm not sure who else knows the ditty, but it goes on to have "one" fall out and repeats until you count down to one, at which point, the "little one" goes to sleep. I sing this to Andrea sometimes, especially when we're doing PT, part of which involves rolling her from side to side to help strengthen her muscles. Well today, Andrea was on the floor having "tummy time", (a torture invented now that babies only sleep on their backs) and was working hard to get her head and chest off the floor. I looked over at her, since she was complaining loudly, and at that VERY MOMENT she managed to roll from her stomach to her back! She was quite surprised by this, and lay on the floor looking perplexed until I picked her up. I eventually put her back on her stomach to see if she'd repeat the trick, but so far, she refuses to perform on command. Still, it was a treat to see, and we're very proud of her!

In today's picture, Andrea is hanging out in her "Giraffe Bouncy Seat", a gift from my friend of longest standing, Ann Marie. (Now that I'm 40, I figure I can't refer to my friend as "oldest"...besides, she's younger than I) I may have mentioned that we let the boys pick many of the items for Andrea's room, and we have quite the animal theme going in the decor and accessories. Fortunately, Ken and I are animal lovers as well. In the NICU, Andrea was in a "Giraffe" isolette, so we decided that the giraffe will be her special animal. (Kenny George has a thing for polar bears) I may have gone somewhat overboard in buying giraffe themed things for her, from her hair brush to the holder for her pacifier. When she's old enough to have an opinion, I won't force them on her, but truthfully, baby giraffes are so cute, it's hard to not love them! I have to say, at least so far, she doesn't seem too interested one way or the other.

In other exciting news, Andrea continues to do well without the oxygen. We give her at least 4 hours off each day. (She can be off up to 8, but has to be on the monitor, and I can't always pull that off.) The biggest drawback to taking the cannula off is that Andrea HATES when we have to put it back on. She's much happier without it, and never stops trying to get rid of it. If she can't pull the tegaderm off, she'll settle for getting the prongs of the cannula in her mouth, where she proceeds to suck on them. I find this quite gross, but we can't seem to make her stop. I guess she at least gets the oxygen support that way. She used to do the same thing in the NICU with the CPAP (excuse me, "nasal IMV"), which I'm sure drove the nurses crazy. It's certainly making me insane!

“I long to accomplish a great and noble task; but it is my chief duty to accomplish small tasks as if they were great and noble”
Helen Keller

Thursday, September 10, 2009

Don't Throw the Baby Out With the Bath Water

Note: I began this post Thursday night and am just now (Saturday morning) getting to finish it. I hope it all still makes sense.

My mother is a wonderful person who (along with my father, of course) raised three children, all of whom have gone on to have children of their own. Counting my stepson, Mom and Dad now have 7 grandchildren, ranging in age from 12 on down to Andrea at 6 months. Both my parents (but especially Mom) now spend their retirements traveling between the three siblings (Long Island, NY, Essex County and Bergen County, NJ) providing baby sitting, help with housework and general moral support. My mom often says she gets frustrated with people who expect babies to be happy all the time. After all, they're entitled to their moods, too. Mom likes to point out the ADULTS aren't happy all the time, and they have much more control over their lives than babies.

So, why all the news about Mom in Andrea's blog? Well, because Andrea is in a MOOD tonight, and I'm ready to scream! She's yanked the cannula off her face at least half a dozen times today, and will only sleep when someone is holding her. Right now, she's on the floor on a play mat, rubbing at the cannula until the prongs are in her mouth. Then she sucks on the prongs. Does she want her pacifier? NO! Will she suck her thumb? NO! She just wants the cannula. Part of the problem right now is that she's overdue for a nap, but I refuse to let her sleep on me. So, instead of giving me the satisfaction of sleeping in her crib, (or even on the mat on the floor) she's just going to be grouchy.

I really can't complain. My Dad was here the last three days, helping out because Kenny was sick and I needed someone. He's very good with Andrea - and is willing and able to hold her while she sleeps. I think he's "the Baby Whisperer". He holds her and she's calm. Oh, well, it's a grandparent's prerogative to spoil the grandchildren. As the mother, I have to hold firm.

In an effort to kill time until I can fed Andrea and (hopefully) get her to sleep, I gave her a bath a little earlier than usual. Like both her brothers, she is a water baby, and loves the tub. The one we have was a gift from "Aunt Adrienne" (who gave us the much more precious gift of her blood for Andrea) and is a blessing for us. It's small enough that I can fill it in the bathroom and bring it into Andrea's room. It's easier to do that than put Andrea on an oxygen tank or use the LONG cannula to get her into the bathroom. What are we going to do with ourselves when we don't have oxygen issues any more? We'll be delirious with the joys! Anyway, here is a picture of Andrea enjoying her bath. She would only smile when I didn't have the camera pointing at her, so she looks more unhappy than she really is :-)

“Patience and fortitude conquer all things”
Ralph Waldo Emerson

Wednesday, September 9, 2009

This Parenting Gig Ain't for the Faint of Heart

First off, I just noticed that the "T" key on my laptop is being wonky. I always spell check my posts, but I'm perpetually tired, and am not sure I'll catch the errors. So, if something doesn't make sense, see if adding a "T" someplace makes it work better. And I'll try to watch myself.

For the past two weeks, Ken has been fighting some kind of upper respiratory illness. With our luck, it was viral, so there was no way to make him not contagious for Andrea. As a result, I banned him from caring for her, touching her, or even breathing in her general vicinity. He was a good sport about it, and took care of the rest of our lives while I did baby care 24/7. So far, Ken is better, and it looks like Andrea might be OK, so it was worth it. Today's picture is the first one I've been able to take of the two of them since before Ken got sick.

So, over the weekend, we took the kids to Van Saun Park in Paramus (a fun place with playgrounds, a zoo, a carousel, etc. Worth a trip if you're in the area) and then went to my parents' house for supper. Our boys were starting back at school on Tuesday, so this was their last hurrah, pretty much. We had a great time, and Andrea always does better when she's away from home. I think she's tired of the limitation of the concentrator, and prefers to be out and about. Before we left Mom & Dad's, we decided to open a new oxygen tank for the ride home. It's not far, less than 30 miles, but with traffic can take more than an hour, and we didn't want to run short en route.

Once the new tank was opened and the regulator attached, I checked the oxygen flow and the gauge, just to make sure all was functioning. Imagine my surprise when I noticed that the brand new oxygen tank (which had been sealed until 5 minutes ago) was almost empty! Suffice to say, we panicked! Unfortunately, you can't run to CVS and grab some O2. We flew out of the house and I confess, drove like a banshee to get back home. The boys were in the back of the car on baby duty. Every five minutes, I had one of them checking to make sure the cannula was in her nose and her chest was moving. God was with us, and we made it home in once piece. But it was a scary reminder of how dependent we are on the equipment, and how relieved we'll be when it's gone.

As if all this is not enough, we had a scare with "my" son yesterday. He was running a fever on Monday, so we dosed him with Tylenol and let him watch millions of cartoons. Yesterday, which should have been his first day of school, he woke with an even higher fever, and such severe muscle pains he needed to be carried out of bed. (And he has a 6 foot high bunk bed!) I called his doctor, who advised a trip to the emergency room. So, we headed off to the ER, where we spent 4 hours having IV fluids and blood tests. Thankfully, the tests were all negative for serious illness, and the IV fluids made all the difference. However, having hit 40 in May, I'm trying to cling to my still-dark-brown (but thinning) hair. Between the oxygen and the older children, I feel the grays starting to form beneath my scalp. LOL!

"I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I've bought a big bat. I'm all ready, you see. Now my troubles are going to have trouble with me." Dr. Seuss

Monday, September 7, 2009

Life As We Know It

Thank you to Daddy's friend, Lauren, for my pretty outfit. Mommy says I look too cute for words.

I know many of you miss the daily updates, and I miss posting them. I have to admit, writing this blog is very therapeutic for me. Unfortunately, I find that I have less time to write, now that Andrea is here 24/7. Of course, there is less news, too. As time passes, Andrea is becoming more and more like a regular baby. I don't want to start posting information about how many ounces of milk she's had and how long she's slept. I don't want to write it, and I imagine that reading it would be pretty dull, too, after a while.

However, having said all that, there is NEWS to share today! (Well, it's from Friday, but this is my first chance to write.) Andrea went to see the pulmonologist on Friday, for her monthly check up. The primary goal right now is to get her OFF they oxygen, preferable before I kill myself or throw the PulseOx monitor out the window. Last month, the doctor turned her oxygen flow down from .5 liters per minute to .25 liters per minute. We thought he might go down again this time to a flow of .125. Instead of that, he cleared us to take her off oxygen completely for up to 4 hours at a time, twice a day. She needs to have the PulseOx on so we can tell if she gets into trouble. As I write this, she's been off over three hours and her "sats" are running between 95% and 100%.

We are to continue to give her these four hour breaks twice a day (daytime only - oxygen all night long) until the beginning of October. At our next appointment, if Andrea is doing well, she will be scheduled for a "sleep study". She will spend the night in the hospital where she can be intensively monitored. In addition to her "sat" levels, they will look at how her respiratory system in general functions while she's sleeping. Hopefully, all will go well and we'll have our sleep study in October. My prediction is no more oxygen by Thanksgiving. Trust me, we will all be more thankful than you can imagine to be done with this!

The PulseOx is a mixed bag. We have fewer false alarms with it than we did with the apnea monitor. However, when Andrea is especially "wiggly", the monitor can't get a good reading, and will alarm. (We call this the "happy baby dance", when she's just playing around with her arms and legs) We can't turn it off, especially at night, because one of Andrea's favorite tricks is to yank the cannula off her face. Since we can't watch her around the clock, the PulseOx is the only way we have to tell when she's been up to mischief.

The pulmonologist has also been following Andrea's blood counts and electrolytes since her hospitalization. Her hemoglobin this last time was a whopping 10.5! It is my understanding that 11 to 14 is "normal", so we are incredibly close to normal. Andrea has never had a hemoglobin count this high without a blood transfusion, so it looks like her bone marrow has turned the corner and is finally up to speed. Her potassium, the only electrolyte that has been misbehaving since she stopped taking the diuretics, was finally within normal range, so we don't have to repeat blood work for a while. The doctor DID order a chest x-ray for the next time, since the last one Andrea had was in June, and she had the flu when it was done.

Andrea is now officially no longer a "newborn". She's wearing 3 month sizes in baby clothes and size 1 diapers. Her weight is up to 11 pounds, 8.5 ounces. Her length is 21 inches. I believe I mentioned before that preemies grow differently. Her head is still much larger than the rest of her body, and the length will be the last thing to catch up. Still, she's holding her own on the growth charts and moving in the right direction.

Thank you for all the on-going prayers, good wishes and support. I have always known that many more people are following this blog privately than publicly. In the past few days, I've gotten several encouraging messages from those anonymous fans, and they cheer me more than I can say.

“Friends always show their love. What are brothers for if not to share troubles?" Proverbs 17:17