Quick Update & Pictures

All is good... just a quick update and I wanted to share some pictures. I love this one taken over the weekend of all the kids.
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Lucas has a nasty cold that he graciously shared with me this week, but with any luck it will not turn into anything more in his lungs. A little wheezing and we're on nebulizer treatments again, but not enough to head to the doctor just yet.

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One new thing... we added speech/feeding therapy recently to his long list therapists and doctors. She did two feeding evals, and will come back in early June to do a speech eval. For feeding, he needs some work but she said he improved within the two weeks she saw him. I think her description of his chewing was, "the skills are there, but he's not very efficient." Apparently he moves the food too much from side chewing to smashing it against the front teeth to breat it up, which is tiring him out... and thus, not eating as much as he probably could. We are also trying to get him onto the sippy cup or straw, but that has been very slow going. I think I have every brand of sippy cup that is made. Bran always makes jokes when I bring another one home, "do we really need another sippy cup?" But I haven't tried this one! It seems like everything with a micro-preemie truly has to be "taught" to them. Not just instructed or shown... but weeks of "teaching" the skill. Nothing seems to come easy. She brought a special bottle and straw last week (which is actually an old honey bear bottle) with a very hard tubing as a straw that is actually used for aquariums (the things they come up with). We are supposed to teach him by squeezing some in his mouth as he puts his mouth around the straw. He actually put his mouth around and sucked on it the first time I tried it and I was so proud of him... but then smarty pants figured out that he didn't like the liquid, so he's not falling for that anymore. He hasn't done it since, he just bites the straw now. Our double challenge with the drinks is that he only will drink HOT Pediasure... no room temp or cold drinks for this prince. So, he's not keen on water, or juice, or regular milk. We've always been instructed by our GI to only give him Pediasure for the calories, so this is the first time he's trying new things. She wanted me to try a milkshake, but he is very sensitive to cold things, I can't even give him fruit that is really cold. ...She's never seen his reaction to ice cream when we've let him try it! He's coming along though, I have no doubt he'll get the hang of it. After all, he's only been on real table foods for a couple of months.

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We started swimming lessons this past week, aquatics can be great for a weak trunk. Everything he's working on right now is held back because of his low tone in his stomach and back. Several months ago we tried to find a PT that specialized in aquatics, but believe it or not with all the resources here in DC/MD/VA, I couldn't find one! My friend tried to get us to join her with her daughter at these swim lessons, but I just felt that he wasn't strong enough physically for a non-therapeutic class, or ready for all that sensory input--from the water and the other children (he cries a lot now when he hears loud squeals from other babies due to his sensory/neurological issues). But, now I feel like he's ready and he seems to like it. I would call it more of an acclaimation class than swim lessons, singing songs and getting him familiar with the water. And guess what... the instructor is not a PT, but she has years of experience working in aquatics with special needs children. She and I talked for awhile about his challenges and she was kept telling me how great this will be for him in multiple areas. How great is that to have stumbled an instructor that understands what we're dealing with? Sometimes things just have a way of working out!

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The coolest part of this is that when I hold him on his belly and tell him to "kick," he does and he get so excited! He really kicks hard, which is incredible. Since he's still a long way from crawling or walking, its awesome to see him use his legs the right way in the water... he kicks perfectly, right-left, right-left. Its been confirmed that he has triplegic Cerebral Palsey, meaning three of his limbs are not functioning normally due to neurological damage (the level we don't know yet, hopefully we learn that it is on the mild side). We have learned that CP is a VERY broad term to mean only that... that "typical development has been disrupted by a neurological injury at birth." It doesn't automatically mean wheelchairs and leg braces, it is a term that has a very large spectrum. I used to relate CP to only severe situations, but many children with it do walk and go on to live typical lives. This is why all these early intervention strategies are SO, SO important the first few years of life when the brain is mapping itself. Everything we are doing now in these first 3 years has so much influence on his future. I guess that's why I've become obsessed with finding the best methods and resources in this field! :-)

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I'll end on a high note... his left arm continues to improve. Its just simply amazing to stand by and watch the progress as it happens... you can see that new connections are occuring in his brain around the missing tissue. It used to be that he needed the air splint on to start using the left. Now, when you say "where's your nose?" He starts to point with his right, but as soon as we say, "no, with your other hand," he stops and uses his left hand to touch his nose! He does this for many of the others too... head, ears, eyes, and mouth. He doesn't have the fine motor skills to "point" yet, but he raises the back of his hand to touch the body part. It goes without saying, SO proud of Little Man!
I should mention too that its heart warming to watch the kids get excited at his accomplishments. While they don't know or understand the complexity of his situation, they understand that he has challenges and is behind the other babies. They are so supportive and encouraging to help him learn and genuinely excited when they see him doing something new, like using the other hand. Anna called me yesterday at work just to tell me that when she says "Lucas, roll over" that he does it (she hadn't seen it before). And I can hear Abby so clearly as I type this, in her high pitched voice saying, "Good job, Lucas! Good job!" She is also the first one to run up to us to say "I just got Lucas to do (fill in the blank)!" Or, Nicholas standing him on his feet (something new Lucas is also doing, for about 10 seconds at a time), and singing "You're standing, You're standing!" (Exactly like he hears me sing it, and with the same excitement!) We're pretty lucky that they are all so good with him. I know he is getting a lot from their stimulation and he absolutely lights up when they walk in the room! The more chaotic it is with them laughing and carrying on with each other... the more he giggles at them. He thinks they are all hysterical.

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Ok, not such a "quick" update, but here are some pictures from Mother's Day weekend and last weekend...

Lucas and I with Matt (my brother), Misty, & Lyla

Remember my last entry talking about Lyla making

Lucas crack up by jumping? Check out that face!

Playing with Grandma

When exactly did my boy turn into a toddler?

Getting some sugarBuddies

There he goes again, jumping does it every time!Playing with Abby

LOVES to be thrown!

We're Back!

Sorry it has been a few weeks, a lot going on since our last update. We did our March for Babies walk and it was inspiring, as always. We decided at the last minute to walk in Reston, VA a week before the one we were registered for in MD because we were going to be out of town. It was just us and the kids, and Danny & Saundra met us for the after-event. The kids were all excited to walk this year again, we were scrambling around that morning running late trying to get everyone out of the house and on the drive there Nicholas kept asking what time it was and how long until we get there. He said, "Its ok if we are late, I just care that we get there to walk." Very sweet. Another quick story from that day, there are several signs posted throughout the walk of prematurity statistics, efforts of the March of Dimes, and children's names displayed "in honor of." We came up to one that Bran and I recognized the last name, and then realized that it was the daughter of someone from the support group I am in that we met two years ago. She had twins six years ago born at 26 weeks and one of them didn't survive. Bran explained to Nicholas that we knew the Mother and her twin sister, and he stood in front of the sign for a long time reading it. We were walking away from it and Nicholas had some questions about when Lucas was born, I told him that he was born at 25 weeks which was even earlier than that little girl. He said, "but Lucas made it." Then he said, "I know what that is called... he's a miracle." It brought tears as I said, "you're absolutely right, Nicholas." I was so touched by that, they are all so proud of him.

We are still raising money for our Lucas team until June 30, so we would still appreciate any donations! Thank you to our families and great friends who have already donated. We are up to $1600 and hope to reach $2500.

The following weekend, Bran and I got to get away and spent five days on the beach in Aruba! His company sponsored the trip again this year because they made their number. Lucas stayed with Bran's parents for two days, then my Mom flew up to spend the rest of the time with him at our house. I don't know who enjoyed their time more... Bran and I, or our parents! We had an awesome time... lots of sun and lots of drinks by the pool... just what the doctor ordered!

That week Abby had a special visitor at school... Abby had been asking us if Bran could bring Lucas to school sometime to meet her friends (after she took pictures a few weeks ago to show her class) so Bran arranged it with her teacher. She was soooo excited! I saw her the evening before and she ran up to me, "Guess what?! Lucas is coming to my school tomorrow!" Bran said it was really sweet, she was across the room when he arrived outside the door and she could see him through the window. He said she got this huge smile on her face and started waving really fast. When she was allowed to get out of her seat, she jumped up and literally ran over to open the door. She was so proud to show everyone, her teacher told Bran that she's always talking about him and said she can always tell the weekends she is at our house because she comes in on Monday morning excited to tell stories of the new cute things Lucas is doing. Abby asked if she could hold him, and she got Lucas to do all of his tricks for the class (she's always been the best one at being silly and making him belly laugh). Several kids asked Bran if they could take their picture with him and Abby. So cute. One of them said, "I have a baby cousin, but he's not as cute as Lucas." Ha. They had all kinds of questions. One of the kids immediately noticed his nose and asked Bran about it. Before he could even answer, Abby answered it very maturely, "it was hurt when he was in the hospital because of the tubes to help him breathe, and we're going to have it fixed this summer." One kid asked how small he was and Abby told him his head was as small as an apple. When the kid said, "Wow!" Abby said "yeah, it seems funny now, but it was very serious then."

Just a few days after we returned from Aruba, Bran had to get on a flight to Australia for ten days for a long week of meetings with a potential customer. I wish I could have joined him afterwards for a trip of our own, but there was no way I could leave Lucas for that long! And with all of his therapies and needs, it wasn't an option to take him that far away. Maybe there will be a next time!

Lucas and I survived the week, but not without some hiccups. Our nanny had a medical situation and had to be off work for the entire week! Ugh, this would happen while Bran was out of town! We managed, but it was a lot of juggling and scrambling to find fill-in sitters for a few blocks of time here and there (during college finals, of all weeks), and doing the best I could working at home with him the rest of the time. At times like this, I'm grateful I have a job that is flexible to work at home, and that they were understanding... but unhappy my family lives so far away!

After a stressful week, I packed up the car with Lucas this past Friday on a whim and headed to Ohio since Bran wasn't returning until Sunday night. Lucas did awesome on the ride (7 hours to Columbus) and I'm so glad we went! On that drive, I mastered the art of passing back snacks directly behind me one-handed while driving! At one point, I had been passing him graham crackers and bits of a Nutrigrain bar for about a half hour, then had to make a stop. I opened up the back door and he had Nutrigrain bar and crumbs completely covering one side of his face, and apples on his forehead. He had crumbs all over his shoulders, the seatbelt, his lap, etc...(note: we're just learning to feed ourselves!) I knew he had a little food on him, but I had no idea it was all over. I'm not quite sure how much actually ended up in his mouth. I totally cracked up when I opened the door as he looked up at me smiling with it everywhere... then giggling back at me--food covered--as I laughed at him. I laid him down to change his diaper and he even had graham crackers falling out of his shorts! Ha.

I got to spend a day seeing my best friend and we attended her 4-year old's preschool play (which was precious). Then my Mom met me in Columbus on Saturday night and we spent the rest of the weekend together and hung out with my brother, his girlfriend, and her daughter, Lyla. Just like Bran's kids can instantly get Lucas laughing, Lucas was just as giddy with Lyla. She'd jump around, and he'd laugh so hard his face would turn red, with watery eyes. They were very cute together. I'm so glad I got to spend Mother's Day with my mom, and that she could get that time with Lucas!

And this would be why I haven't had time to write an update! Everything health-wise is going well! Nothing new to report, which is always a good thing. He's as cute as ever, so happy and social and just the sweetest thing. If you are not paying attention to him, he moves his face in front of yours to make eye contact--to make sure you know he is there. His most recent change... he finally started dancing with his arms. I've seen other kids much younger than him do this, and wondered if he ever would. He moves his right arm up and down with the music while the left arm goes in a horizontal motion (the only range he has in it right now)... it is the cutest thing I think I've ever seen! Especially when he does it from the back seat to Lenny Kravitz.

His left arm continues to improve. This will be a very long process, but its nice to see baby steps. This past week I noticed that he is finally initiating lifting his left arm to put a shirt on. He has always pushed the right through immediately, but the left always laid there and I'd have to work the shirt on around it. We've always said "stretch" and I pull his left arm through, and he surprised me by initiating stretching it out on his own for the first time. This is a big deal, and such an exciting feeling!

Whew, sorry for the long update, a lot to report! Here's some pictures from the past few weeks.

March for Babies Walk
Pooped out after the walk

Abby's visitor at school

Childless in Aruba!

BIG boy on the train at Tara's house

Mommy's Day

Honored

The March for Babies fundraising walks are going on this month and we are raising money in Lucas' name again this year.
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A few weeks ago I was honored to be asked to tell Lucas' story at the Montgomery County March of Dimes kickoff breakfast (with team fundraisers and corporate sponsors). Our team raised $6300 and was #2 in funds raised last year and we were awarded a nice plaque that proudly hangs in Lucas' room today. I decided rather than go to the meeting myself to deliver the message, that I would take Lucas. I was told later by a few people how much they appreciated seeing Lucas in person, that it brought everything into perspective for them. I thought I could get through his story easily, but I cracked shortly into it describing the night the doctors told us Lucas was going to die. It is still very emotional for me to recount, but I could not have been more proud as I talked about all he's overcome as I held up his tiny diaper that was only 1.5"x3" in size. That size diaper (PXS-preemie extra small) even swallowed him up, his entire torso fit into the diaper, they had to fold it in half on him. People just can't visualize how small a baby is that is born that early, and usually gasp when they see the diaper.

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We imminently believe that without the work of the March of Dimes, he would not be with us today. Last year, my friend flew here to walk with us and shared the footprints of her twin girls that were born more than 30 years ago... they looked exactly like Lucas' tiny footprints. They were born at a later gestation than Lucas, and weighed over 2 lbs, but neither survived. I later learned that in 1976, the March of Dimes was responsible for creation of the first Neonatal Intensive Care Unit, a year after her babies were born. Had they been born today, they would have survived and probably even escaped many of the disability risks being over 2 lbs. Seeing those footprints really brought things into perspective for me and the important work they do.

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Another thing happened that morning--a girl in the audience started crying as I spoke and after I was finished she walked out of the room. I felt awful, I knew that something I said hit something personal with her. I asked the coordinator about it and she shared with me that this mother had lost her child (born at 25 weeks) after living two months, just this year. My heart sank and I felt responsible for bringing her pain, as I stood up there boasting how Lucas had defied all the odds. At the completion of the meeting, she came back in... and thanked me. I told her how sorry I was, and she said "no, I came back in here to thank you for bringing your son and for showing me that it IS possible, and for re-affirming my reason for being here to raise money." I hugged her and was so moved, I cannot imagine having the strength to be there after losing a child. She is the one that re-affirmed my reason for being there.

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Others came up afterwards to thank us, and to say hello to Lucas. One woman told us her son was born at 25 weeks too and of the challenges he's overcome (now an adult), and shared with us how much the experience changed her entire family and how her two other children chose careers in community service and special needs as a result of being raised with their brother. Bran and I were very touched, as we know that wonderful things are transpiring in all of us as a result of this little guy. As I started this posting... I have never been more honored to be part of something.

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I'll end this long post with one more touching story from the same weekend. Bran and I went to our first Advisory Commitee meeting for Children's Hospital. There was a doctor and a few nurses that we had and I scanned the room for anyone else that looked familiar. I pointed out one woman to Bran that I thought had a baby in a bed across from us for awhile at Children's, but wasn't certain. We started off the meeting by making introductions telling a little about our experience at Children's (there are about 8 sets of parents on this year's commitee--some recently had children there spanning to several years ago... but all spent significant time in Children's NICU). The woman said she was transferred to Children's in March 2007, which matched our timeline, and then said her son "Riley." I immediately smiled and got excited to see her remembering exactly who she was... Baby Riley was his neighbor for a long time and was always dressed in really adorable colorful outfits and had tons of toys in and around his crib. His mom was there every single day while she had other children at home and I even wrote about her in an update on our website in 2007. She then finished her story... that Riley was there til Nov 2007, when he passed away. I went from being excited to my heart sinking, I can't even describe the awful feeling... to know this little boy, and to have exchanged many pleasantries with this woman and looks of compassion when our kids were in there together. I was expecting to cheer for a success story, not to hear that he didn't survive. He was born weighing 1 lb, 7 oz and never made it home. He was in the hospital for 11 months due to lung complications, and she wrote this in our directory...

"We arrived in March, and I was allowed to be his mom. Due to the lower age limit at Children’s, his brother Rory saw him for the first time. We learned to take care of him and not be afraid. Riley was feisty, mischievous, smart and so loving. He could give you fight and a smile all in one shift. The hardest day was being told he would never come home. They took my road map home down and said he had two to four months to live. Children’s counselors helped me tell his brothers Robert and Rory. The nurses pulled me through the hardest times and celebrated the great times. The doctors tried everything and never gave up on my son. November 3, 2007 Riley played with a balloon and thought it was funny. That night he passed away in my arms.

Riley is my sunshine. What I realized that night was how many people at Children’s loved and cared for my son. So we have come back to help in anyway possible and to honor our Riley’s memory."

This is a very sad story, and I don't want to bring anyone down, but I want to paint a picture of reality. We saw so much in our time in the NICU--both of heroic babies and ones that never made it. This is why I recognize and appreciate the miracle of our son's existence, and why we will always support the efforts of the March of Dimes, so babies like Riley get to go home. I hope you will consider donating this year, there is a March of Dimes link on the side of this blog.

Picture of our plaque awarded to Team Baby Lucas - Second Place 2008