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