Thursday, August 30, 2007

Memories of Katrina

On the two year anniversary of Hurricane Katrina, I am being bombarded with reminders of that time. It was a scary, surreal, and distressing time in my life that I still remember like it was yesterday. So hard to be believe that already two years have passed since then.

When Katrina came through, Margaret was about 4 weeks old and had just started the apnea/bradycardia phase of her NICU stay.

The night before the storm hit, I set my alarm clock for something crazy like 4am and went to sleep worried about what was to come. New to a coastal state, I had no idea what to expect. David and I had planned to get up before the storm came through so that we could get to the NICU and be with Margaret. But there was no need for an alarm clock.

You could hear the thunder hours before the winds or rain started. I laid awake in bed and listened to the ominous sound. Finally, I got up, made a pot of coffee and David and I got ready to make the drive to the hospital. It was still well before daylight when we made the short drive but the winds were already picking up and there were limbs down. Our tiny car was whipped around but not so much that we needed to turn back. Still, my knuckles were white on the door handle.

The NICU was eerie so early in the morning. David and I were the only parents at the hand washing station. Inside it was business as usual except that every Neonatologist on staff was there. At the six o'clock shift change instead of the nurses leaving until their next tour of duty, they checked the available rooms for their sleeping assignment and hoped they liked their roommate.

I only left Margaret's isolette a few times that day. Once, I peeked out the hospital windows and saw the roof of some structure or other was in the courtyard and that power was out everywhere except our hospital. I had seen the flicker when the electricity went out and the NICU went to emergency power. The one time that the emergency power failed for a few terrifying seconds (Margaret was still on breathing support), the nurses were all pointing to babies and picking who would Kangaroo which babies. A nurse and I were preparing to pull Margaret out of her isolette when the power flickered back on.

David and I returned to our powerless house that same day during the early evening. Because we are a little inland, we had not prepared like we should have. We had plenty of candles (because I'm a girl) but our food choices were limited. The first few days of no power were not too bad. Because we were on the west side of the storm, the winds had pulled down some cool air from the north. We only heard bits and pieces about what was going on in New Orleans... most of our information came from the radio and nurses, many whose families had lost everything.

After the first few days, things started to get a little crazy. The airspace above our city was filled with those giant military helicopters. Night and day you could hear them like in a war movie. Suddenly the NICU census increased 100%. Every nurse they had was working and had been there days on end. I no longer could fit in the space next to Margaret's isolette because of all the babies. There were camera crews and news people all over the hospital and in the unit. In the halls were arriving babies from life flight helicopters that landed on top of the parking garage. Nurses crying and apologizing to parents that their babies didn't make it through the flight. There were so many babies that no one knew where the parents were. There were such tiny babies all alone.

As the days went by, I gradually began to see more Moms in the NICU. There were many tearful reunions. One of Margaret's neighbors' Daddy showed up. He was a fixture our remaining days in that pod. The nurses began to be able to get some sleep and things slowly calmed down to near normal, although still very crowded.

While things stabilized at the hospital, our city was in borderline chaos. At least that is how it felt to me. There were stories on the radio about shootings and rapes and armed robbery. Stories of gangs roaming the area where we live. The University was shut down because of rumors that there was so much violence. Most of these stories we know now were untrue. Although a few stores had opened a few days after the storm, the hours were greatly reduced, and they were guarded by the National Guard with very large guns. The shelves of these stores were cleaned out, anyway, most people went for the air conditioning and just to have something to do. People lined up at places to buy ice for hours before they opened. It was nearly impossible to buy any.

The churches began to fill up with NO residents. All of our neighbors were housing people they had never met before. I donated most of my maternity clothes to the shelter housing pregnant women next to the hospital. There were so many people living in their cars. You could see them in the parking lots of grocery stores, mostly. Everywhere, you could hear the hum of generators. Lines to fill up a gas tank rivaled those of the 70's gas crisis. Traffic was terrible. It took hours to go a few miles. Calling someone on a cell phone was futile. All circuits were busy for at least a month.

After nearly two weeks, we finally regained our electricity. I was able to see the images of NO that almost everyone else in the country had seen. I couldn't believe my eyes. I couldn't believe that such destruction had hit so close to my home. The images still haunt me. That entire time in my life still haunts me.

In early November, Margaret was released from the hospital and my entire world became centered around her care. And that is when the hurricane ended for me. However, our city still shows the effects of that time. Our state is far from recovered.

I hope all those babies made it home.

Thursday, August 23, 2007

More Video

I swear, I'm going to do a written update soon. Right now my brain is so jumbled I am having problems putting together sentences. Ah, I love severe sleep deprivation.

Saturday, August 18, 2007

Just Some Pictures of My Sweeties

And, yes, at 2 she still can fit in the front pack!

Friday, August 17, 2007

Tuesday, August 14, 2007

The Diagnosis Details

Look at that sweet boy! Isn't he so cute?

Yesterday we had our third Neurology follow-up since the NICU. And even though we got the CP diagnosis, I did not leave feeling like I had been hit by a truck. I was sad, sure, but my views of CP have matured since his last visit. I'm sure I've still got a lot to learn but now CP is no longer a big looming doom monster.

Our Neurologist (Dr. Hippie) is wonderful. When she examines him, she tells me everything she is looking for and what she finds, how severe it is, and even a little about how she feels it will affect him. The other Neuro we had seen just examined him and then said, "Well, he is showing spasticity and I am concerned about seizures."

During the exam, Dr. H agreed that William's adductor muscles are tight as are his ankles. His hamstrings seem to be okay and his hips are still very flexible. So that is good. William does still have decent stepping reflexes although his legs do scissor quite a bit. This will probably make walking difficult in the future as his knees will probably scissor after his lower legs straighten with age. No big surprise. Wheelchair = okay. Remember? She also said, "His head control is coming along." I nearly cried with joy.

A bigger concern is that he is not able to use his arms or hands for play yet. The doc didn't seem to be too ultra concerned with this right now.

And, of course, my biggest concern has been his head growth. I am happy to report that he had really good head growth since his last visit and is getting closer to the curve! This bodes well for his cognitive function. We were concerned about profound mental impairment. Right now that doesn't seem likely. Hooray!!

We are also going to try wean him from his anti-seizure medication since we will be starting Baclofen in a few months. I pray that he doesn't develop any seizure activity during or after the weaning.

Over the past couple of weeks I can see a huge change in William's behavior. He is "waking up", so to speak. I think he may be seeing better, but I could be wrong. I do know that he really wants to play and not be held so much. I am busy trying to adapt toys to let him be able to play on his motor level and also challenge him some. Like his sister, he loves to rough house. So I frequently count "1, 2, 3" and then jostle him around on the floor. He loves it! I'll try to get a video but since Daddy will have to be here for that, it may be the weekend before I can post it.

I am really looking for toy suggestions you may have. Bright lights, noise, and/or vibration are the things that we look for. I can hold up a toy and operate it for him, it just needs to be obnoxious enough to get his attention and perhaps motivate him to reach and touch it.

Monday, August 13, 2007

Cerebral Palsy

We have the diagnosis. I will update more later.

Thursday, August 09, 2007

About the Video

I just wanted to say a few things about Margaret's knowledge of the alphabet, numbers, and now some words.

This is not something we trained her to do or even practiced unless she initiated letter play. We do not have a house full of "educational" toys that teach her these things. Nor do we let her watch many of those baby developmental videos.

What we have done is read to her every night and every day starting when she was about 8 weeks adjusted age. From the beginning she has loved, loved, loved books. She seemed very alert and aware of them from the moment we introduced them. Then her PT brought over a book of the alphabet to entice Margaret during tummy time. That was the beginning of her love affair with letters. She would ask us to read that book over and over... many, many times in a row. I hated it. I hid it, sometimes.

One day her Grandmother told me that she knew some of her letters. I thought she was joking. Margaret was about 8-9 months adjusted at the time. But sure enough, Grandy would ask, "Where is the A?" and Margaret would point to an A on her shirt. I was totally blown away.

Her interest in letters intensified through the months and her first words were the letters of the alphabet. I estimate that she knew the alphabet by 15 months but that is hard to know for sure. A few months ago, I decided to teach her numbers and she learned the digits in a few days. That was the only time I have tried to teach her these things.

At 2 years old, she knows her alphabet, capital and lowercase. I had no idea she knew lowercase until the day I filmed that. She also knows her numbers up to about 17, I think. Could be more by now. She only counts to six or seven but she recognizes the other numbers.

This week she has started to show that she knows some words as well. Go, ball, fly, cat, bug. She really shocks me at times.

I don't think this is anything we have done as parents. I think she just has an incredible visual memory. I admit, though, this is a fun "trick" to show off to the relatives.

(top pic is of her at 8 weeks loving a first book at Christmas time.)

Wednesday, August 01, 2007


Dear Baby Girl,
Two years ago you came into this world. You weren't kicking or screaming but you did give a little kitten meow to let us know of your arrival. It was music to my ears. We sat on pins and needles through your months in the NICU. We hibernated the first winter when you came home. We held our breath while watching you slowly hit your milestones on your own timeline. And now you are two. You are beautiful, hilarious, perfect.

I can't believe the time has passed in one giant joyful blur. Thank you for fighting to stay with us. Thank you for teaching me just how much I can love someone.

I love you with all my heart,