Happy First Birthday, Little Man!

I’m sorry for the lag in time again, life has been very hectic this past month, to say the least. First I need to say a belated Happy, Happy Birthday to our Little Man! Lucas turned ONE on March 27!! So exciting and such a special birthday! The day itself was bittersweet, bringing back a lot of emotion from the year we had, but so, so proud! I think it also brought some closure with it… to be able to close the book on a heart-wrenching year, but an absolutely miraculous and life-changing one at the same time. I am not the same person as I was a year ago, and in many ways I am thankful for that. I see things through an entirely different set of eyes now, and a heavier heart. The day of his birthday, someone posted an Erma Bombeck writing, “How Preemie Moms are Chosen” to the Preemie support group listserv that I subscribe to. I couldn’t believe it appeared that day, it really got me. I especially love the part about never considering a step ordinary and knowing we are witness to a miracle--I've said that since the beginning...everytime Lucas does one of those "normal" baby things for the first time. My friend Jodi says God had a hand in it, that there was a reason someone posted it there for me on his birthday. I shed a lot of tears that day, but at the end of it, it hit me as Bran and I stood together over Lucas’ crib watching him sleep, just after putting him to bed for the night. This could have been an entirely different day of remembering. March 27 could have so easily have been a day to mourn his loss, but it isn’t! It finally hit me that I should not grieve anymore about this past year, or about what the future may hold… that this amazing, precious, little boy is here with us today, and has given us so much already.

On to the good stuff… we had a wonderful celebration on April 5 for his birthday! We had about 30 guests for the party and had a great time. My Mom and both brothers (with their families) made the trip from Ohio that weekend to be with us. My Dad and Rose were not able to come that weekend, so they came up the previous weekend to visit. We had a houseful… 7 adults and 6 children all under one roof! It was fun, although some of us had more fun than others, as I awoke to my brothers & Bran singing Playstation Karaoke at 4 am on that Saturday! Ha. Thank you Pat, for going to great lengths to get Lucas’ pictures printed in time for the party so we could show them off to our family and friends. We received SO many compliments on how they looked!

I need to tell one quick story... of Nicholas' birthday gift to Lucas. Nicholas picked it out by himself weeks ago and wanted to keep it a secret from everyone until the party (including me). One day Bran and Nicholas were walking through Home Depot and Nicholas spotted a Black & Decker children's tool set and said they would be perfect for Lucas and asked his Dad if he could get them and along wiith Lucas' first toolbox to store them. Bran said took a lot of time picking out just the right color of toolbox. He was SO excited and made Bran promise not to tell anyone! I remember him coming home, being all secretive in his room while he put it all together. You see, Nicholas has always been really into helping his Dad as we've rennovated our house, and he said he would teach Lucas how to hold the tools. He said as he and Dad work on projects, that "Lucas could sit in his bouncy chair and learn from watching them." How cute is that? He even said that until Lucas is old enough to really hold them correctly, that they could tape them to his hands! Ha. Nicholas had it all organized -- the tools inside, the bolts in the compartment in the top, he was so proud of it. You can tell he has his Dad's knack for organization the way they were perfectly aligned in each compartment. Lucas got a lot of great gifts that day, but this one was definitely the most special!

Lucas’ health… I’m happy to report that our little guy is finally back. It really took a long time and this month has been another lesson in patience. Unfortunately Lucas was pretty tired and out of it for his birthday party. It took him about a month to adjust to the seizure medication, as we had to slowly decrease it (which also made him loopy with each adjustment). I think we’re now at a manageable level and he is holding his head up again and his strength is coming back in his legs and arms. The neurologist said we will keep him on it for a year and if he doesn’t have any seizures as he weans off of it (through outgrowing the dose), then we should be able to assume it was the trauma of the surgery that caused it. If he does have a seizure during this year, then he will probably be on it for life. Fingers crossed!

The left eye is still dilated, the neurologist thinks/hopes it will eventually go back to normal but thinks it will take a very long time. The good news is that the pupil still changes with light (very slight --but it does change), but it stays quite large and dilated, which means that the nerve is working and not severed, but probably damaged. She said the sheath to the nerve grows back very, very slowly, only 1mm per week. So we are hoping it is just going to take some more time. His eye is still drooping on that side as well, but is noticeably A LOT better today than in previous weeks. This tells us that the nerve is beginning to repair because she said the droopy eyelid and dilation are operated by the same nerve. Its nice to see it getting better because before he looked SO tired, or it looked like he was giving you a dirty look! I’m sure you’ll see what I’m talking about in the recent pictures.

The disappointing news is that his eyesight seems to have taken several steps backwards. We appear to be where we were in the fall last year, with him not responding to much at all visually. We’re not sure why, one theory is that the brain was accommodating for all of the pressure and now everything has changed from the relief of that pressure. It is possible that the brain will have to rewire itself in its “new” configuration. The vision specialists feels that he’s improved in the last few weeks and she remains hopeful. We seem to be getting a little response from him in the far left visual field, which is probably why he pulls his eyes so far to the left Only time will tell, we are trying to be patient and give him the chance to heal, and hopeful that he’ll continue to improve. It is difficult to watch him grasp and feel for things, with no visual interest in his toys. But he’s shocked us before, I’m waiting for him to show us the next surprise.

We’ve had some challenges with his weight gain due to the surgery and seizure meds. His intake dropped significantly right after the surgery and he stopped gaining--had no weight gain for 2.5 weeks. GI wanted to send us home on NG tube feedings … but thankfully she’s giving us a few weeks of trying other things before that is necessary. NG tube feedings were done in the NICU and we DO NOT want to do them at home! It would mean we’d have to put a small tube down his throat into his stomach every night and hook him up to a feeding machine to deliver formula while he slept. It is very risky to do at home because there is a chance you could miss and go into the lung (you are supposed to listen with a stethoscope to make sure it is in the stomach when you push air through the tube). The other risk is if he pulls on the tube and brings it out of the stomach into the lung area, they could aspirate. No thank you!! Luckily, our GI doctor is open minded and listened to me when I told her that I felt that the seizure meds had everything to do with his not eating/not sleeping spiral. The medicine messed with him so much that he was literally NOT sleeping for naps longer than 15 mins, and he remained in a constant state of exhaustion, and couldn’t eat. She decided to put him on an allergy medicine that is to act as an appetite stimulant. The first week he did really well, the second week, not so good… and this week we’re hopefully on the upswing again. Just yesterday we were finally able to transition him off of formula onto high calorie Pediasure (a long process that was not easy), which should help him pack on the calories. We go back to see her on Tuesday next week, so I’m praying that he’s gained enough for her satisfaction.

Other than that frustration, we are definitely on the upswing! it is so good to have our boy back and he is constantly smiling! We're working on sitting up and he's getting closer! He went on his first flight this past weekend after the one-year waiting period from doctors (yay!)... he did SO great on the plane, it could not have gone any better. I had some one come up to me afterwards and said "I fly all the time and I've never seen a baby so good!" Of course... there's me... the beaming Mom! We traveled to Ohio (just Lucas and I) to visit my Uncle Roger, who is unfortunately losing a long battle with cancer. It was important for me to get home to see him, and I was so proud to introduce him to Lucas and watch him put a smile on his face (he has the effect on people)!

So, that’s the latest. I know a lot of people are eagerly waiting for the pictures from March and his birthday party! I have so many...I’m working on them and promise I will get them posted very soon next week! Bran and I are going away on a much needed vacation Thursday-Monday to Aruba that Bran won with work. It will be soooo hard to leave Lucas, but time together on the beach with a cocktail is important to refresh our spirits after this year! Lucas needs parents that are not stressed out so we can continue to help him! Plus, both of Lucas’ grandparents are excited to get to watch him, and we are happy that they’ll get the opportunity to bond further!

Please check out the March of Dimes tab I just added to the site. We will be walking this year WITH Lucas next weekend in Maryland! We are so excited because last year we walked in Lucas' honor while he laid in the NICU down the street from us. We vowed to each other that day that we would walk with him in the stroller next year. We couldn't be more proud to do this and to have so many friends and family joining us! We formed the "Baby Lucas" Team again this year and are excited by the overwhelming support. We have 17 walkers on our team in MD, OH, and SC, and about 4 more that haven't signed up yet. My brother, Matt, graciously donated the printed shirts for our team. We can't wait! So far to date, we've collected $3030! Our goal is $5000 and we have over a week left... if you haven't already donated, please dontate to this great cause that helped save Lucas, and so no baby or parent has to have a year like ours!