December 07/January 08

(Weight: Approx. 13.5 lbs)
Happy New Year! Its been over a month since I’ve written, and I’m not sure where the time went! We spent a couple of really great holidays with family and friends, and things have been very busy. Lucas has met many new family members in the past several weeks. We were excited that Bran’s grandmother, Mima, made the trip to DC last week to meet Lucas for the first time (although not nearly as thrilled as she was to meet him!) She has called a few times since returning to Alabama asking if Lucas misses her as much as she misses him! Of course he does… she had a way of making him smile so much! Most importantly, Lucas is still doing great, in good health, and continues to surprise us. We’ve been absolutely amazed at the changes and progress with him in just a month.

Our little man is growing up… he’s outgrown his bassinet and officially moved to his own room, has become very vocal in telling us what he wants, is starting to reach for things, and is now teething (already, can you believe it)?!

The biggest news we have to report is that his eyesight has improved dramatically! In early December, just after the vision teacher started working with him, he started to take interest in items in front of him. I’m not saying it is a direct result of the work of the vision teacher (although she is wonderful), it is more likely it just took some extra time for his brain to wire correctly and bring this function in for him, coupled with giving him the right kind of stimulation. We started noticing him looking at the puppy on his bouncy chair and tracking us as we moved, then eventually started to show some attention to our faces in little bits at a time. Today, he’s able to hold eye contact for several seconds. It is truly amazing, and it is SO wonderful to see his pretty eyes look right at us so often. He is also not sunsetting (looking downward) near as much, although he still gets overstimulated and looks away when he’s had enough of something… but the important thing is that his eyes are starting to sit up normally and it is occurring more and more. The vision teacher thinks this will continue to improve and she is very encouraged by what we’ve seen from Lucas in the past six weeks. It is such a dramatic difference… if he was looking away 95% of the time before, it is probably only about 20% of the time now, and he really pays attention when people talk to him now. I can’t describe how amazing it feels and how grateful we are that we know he can see something! Although we may still have some level of impairment to work with, we at least we know he should have some functioning level. What a difference from a couple months ago, when we were so worried and discouraged! Just goes to show you he’s not done surprising us at all!!

So, his vision improving means… smiles, smiles, and more smiles! He is so much more interactive and is turning into a very happy baby. These have been long awaited and we’re loving it! He’s even started to giggle, which sounds a little like Tickle Me Elmo! I read a quote the other day from a friend that applies so much lately (“I wish you enough pain so that even the smallest of joys in life may appear bigger”). After the journey we’ve had this year, getting to see him smile while looking straight into our eyes is one of the biggest joys I’ve ever felt.

We had a slow month in December in the area of doctor appointments, so there’s not much to say other than it is nice to have a break from so many clustered together. January will be a full round again of follow-up appointments with the Pulmonologist, GI, Neurosurgeon, Developmental Specialist, and Opthamologist. I’ll write another update in a few weeks to let everyone know how those go.

We did get the results of the sleep test and they diagnosed him as having “severe apnea obstruction” and ordered that he be on oxygen at night. They said the study showed that there are times that he is trying to breathe but something is blocking his ability to effectively pull in air. This is not good news to us, but better than the alternative of it being central apnea (which would be neurologically related). The episodes are not so severe that he stops breathing for long, but according to the brainwaves, it is enough to cause him to continually wake up. This disruption in breathing impacts how hard his lungs have to work, and ultimately the calories he burns and his ability to gain weight (as weight gain is the most important thing right now for his overall health and progress). So, we’re stuck dealing with oxygen until we figure out what is going on with him. Against our wishes, we had a big truck deliver tanks to us several weeks ago, which was kind of a kick in the gut, as we felt like we were moving backwards (we never thought we’d be dealing with oxygen after four months at home and continuous healthy lung checkups). The test results also have us continuing with the apnea monitor at night for a little while longer, even though she was right on the edge of releasing us from it last month. I can’t wait for the day we can get rid of that thing!

Here’s the other side of it though… he had a cold the night the sleep test was done and was pretty congested, which we were told could have completely thrown everything off . She even said we should not have had it done with him having a cold (but the technician knew Lucas was very congested, and let us proceed anyway). They ordered us to have an appointment with ENT (Ear, Nose, and Throat) in a couple weeks to determine if he does have some kind of block or scarring causing the apnea, and depending on that outcome (if they can’t find a cause), we will probably be repeating the sleep test in another month to see if it brings different results. On a positive note, during the last visit the Pulmonologist said his lungs sounded great, as “clear as a bell,” and she said she was really impressed with how he was doing (despite the results of the sleep test).

The OT appointments are still going well, and he’s getting stronger every day. He’s not progressing quite as quickly as we would like with his stomach strength, and he’s not quite able to support himself on his arms yet for more than a few seconds (so he’s a couple months behind on hitting these milestones). He should be rolling by now too, which we practice every day. But, we keep working at it and we know he’ll get there on his own time. She did confirm this week that his left side is starting to show signs of being tighter than the right side (mostly his left arm and shoulder), and it is something we’ve noticed lately too. This has been expected, but still a little scary to have someone point it out and to think of what this might mean long-term. She gave us a lot of new exercises to do with him to try to loosen up these muscles, and the other day I literally watched his range of motion change just after she stretched him out. I’m seeing now how these early intervention services do really make a difference… she said if we did not work with him on this tightness, then he would not have the range of motion in order to strengthen the muscles that he needs to use the limb… which means without strengthening, he would use that limb less and less… causing it to get even tighter and more unusable. So, it is kind of a ripple effect if the muscles that are vulnerable are not worked properly in the beginning. She reiterated that it is too early to tell if this is the first sign of CP, that with the proper therapy, he has so much opportunity. She said she worked with one baby a few years ago that was so tight in all four limbs that he could barely move, and she thought for sure his future was going to be very challenging with early signs of CP. But, she worked with him very early and consistently, and today he is a 3-year old that has full use of his body. Although he is still tight and has less range of motion than a typical child, he just requiress some additional stretching… and that he functions normally! We pray that this is going to be the case with Lucas, although if it turns out to be CP, that’s ok too. Maybe I’m too optimistic, or have blind faith as his mother, but I believe with everything he’s done already, he’s going to continue amazing us.

I have to tell one story from our holidays that was very touching. When we were in Ohio, we attended my Mom’s church for their Christmas service. We were overwhelmed by the number of people that welcomed us, so excited to see Lucas – “the baby they’d heard about all these months.” The pastor even asked us to stand up while he introduced Lucas to the church, and said “this is the little miracle we’ve all been praying for all year.” He said he was so happy to have the privilege of finally seeing him there in person, and presented him with his first Bible. I know Lucas was on a lot of prayer lists at various churches this year (which we appreciated so much). Being there with Lucas that day was very meaningful… our little miracle that defied all the odds… and so healthy… it was one of the proudest moments of my life.

The other part of that morning that I have to mention, was meeting a little five year old girl who was also a 25-week preemie... she was my inspiration for many weeks (and she never knew). It was such a pleasure to finally lay eyes on her, especially while holding Lucas. Back in March, when I was in the hospital trying to hold on to the pregnancy at week 22, my Mom told me a story about a woman at her church who had her baby at 25 weeks. That woman told my Mom to tell me to hold on, and that everything would be ok, and that today her little 2 lb baby is now five years old, and “fat and happy.” That comment always made me smile and as I made it to week 23... then to week 24… I would think, if I can just make it to 25 weeks, her baby survived and today is 'fat and happy.' I have to make it to 25 weeks. At that point, I had heard many success stories of preemies (but all born 28 weeks or later, which is when the odds increase significantly). But she was the only one I had personally heard of that survived born that early. Even after Lucas was born and we battled so many ups and downs, I often reflected on this little girl living in my hometown as a healthy child today.

So… we’re standing in a line at church, and I'm holding Lucas facing outward, and this beautiful little girl is standing in front of us, dressed in a fancy Christmas dress with her hair all done up… she is completely staring at Lucas, and smiling at him. I had no idea who it was, but it caught Bran’s and my attention by how intently she was staring at him (and he was looking back at her). We actually said to each other, “look how she’s staring at him, isn’t she so adorable?” At that time, my Mom says, “Angie, this is the little girl I’ve been telling you about!” We were shocked, I didn't even think about seeing her that day. We were then introduced to her and her mother, and the little girl reached up and just held on to Lucas’ hand for several seconds (she could care less about meeting Bran and I, she just went straight for Lucas). It was indescribable. I wanted to get down on my knees and hug her. At five years old, she will never know how she gave this 35 year old girl the hope that was needed for many weeks. Maybe this sounds corny, but it was a powerful moment that Bran and I won’t forget, we talked about it for days. I hope that someday Lucas will give someone strength in a similar way.

I’ll close with saying, “Thank God 2007 is over!” In the words of Bran’s Dad, “out with the old sh*t, bring on the new!” What a rough year it has been, but an amazing one just the same. We are grateful for getting to spend a special and memorable “first” Christmas with Lucas, our families, and the kids (which was also their first Christmas morning to wake in our home)! We are looking forward to a new start, and are very optimistic for good things in this new year.

**I’m working on several few photo albums from the past month and a half (sorry some of these are so delayed in getting posted). I posted a couple and the rest should be done later today or tomorrow. I’ve also included a few videos of Lucas with our families during Christmas week that are really cute.

November 2

(Weight: 11 lbs., 5 oz)
First things first – I posted a new album of pictures taken over the last few weeks. Also, I provided a link to the dedication video I created of Lucas’ life in the NICU. I actually created this a couple months ago, and am just getting around to getting it posted to a website where people can view it. This comes with a warning—if reading his journey through this website has made you cry, you can be sure this video will tug at your heartstrings. I don’t think anyone in our families that has seen it could hold back the tears (and Bryan, I saw you, so don’t even try to say you didn’t cry). I’ve watched the video about 50 times myself, and it still gets me every time. I created this montage as a way to condense all the photos and video, as a timepiece for him to view one day. I’ve said it a million times…we are just so proud of him!

Here’s an update on the most recent appointments…

Last week, we spent the night at Children’s for the “sleep study.” This was something I did not want to do and had a lot of anxiety about, but it was ordered by the Pulmonologist. It was only Lucas and I, they only allow one parent to spend the night in the room. We arrived around 7 pm, and they spent the next hour hooking everything onto him. He had about 10 leads glued to his head and face, wore two belts around his chest and belly, taped a nasal cannula to his face for oxygen, and even had a lead attached to his upper lip. I could only see his eyes and tip of his nose… I asked the technician, “how am I supposed to kiss him now?” (Because I’m constantly kissing those cheecks and all over his forehead!)

I can’t tell you what everything measured, I lost track of what he was telling me after awhile. What I know is that combined, they measured breathing, access to air, oxygen intake, brain heartrate, etc., but mostly they are looking for brain activity in relation to these other things. They are looking for patterns of apnea while he sleeps, and to determine the root cause of his irregular breathing and apnea episodes (whether it is something blocking his airway caused by reflux or scarring… or if the brain is not signaling properly to breathe while he is sleeping). He also wore a pulse-ox wrapped around his big toe (or tiny toe, depending how you see it). When he went to put that on, I said “they always wrapped it around his entire foot in the NICU, why do you do it differently?” He said, it is because he was so small then, it is really supposed to go around a toe or finger… he’s a big boy now, we can put it on his toe.” Ha.

Despite all the annoying equipment on his face, he did remarkably well. He slept through them attaching all the equipment… the technician said he couldn’t have been any easier! He said most babies and children cry and scream through it (in fact, I listened to one baby cry for a good 45 minutes after we arrived who just finished getting all the “stuff” attached). The first time Lucas woke up, he seemed frightened and bothered by every thing, but quickly calmed down. Throughout the night for his feeds, he didn’t seem to mind much. They actually recommend that babies sleep in the same bed as the parent, so the child can feel secure in the new environment and quickly calmed if necessary. They offered a crib if we wanted it, but I definitely preferred him sleeping next to me for this. They had an infrared light above the bed for nightime visibility, and and a video camera on us as we slept.

So he did well… how did Mom do? I hated every minute of it… seeing him attached to all the electrodes brought back some pretty painful memories. As they were attaching everything, I kept thinking, Enough already! Hasn’t this poor baby been through enough? He’s fine, just leave him alone and let him sleep peacefully! I took a few pictures to send to Bran while we were there, which he said also made his heart drop seeing him that way too (click sleep test). But, I kept telling myself that he wasn’t hurting at all, that this is only to help him, and that he didn’t even know anything was actually going on.

I think just spending the night at the hospital resurfaced some raw feelings. It was eerie walking through the hospital late at night when I went out of the room to get something to drink. Children’s is a totally different place late at night…deathly quiet…the only time I was ever there that late was during the really rough times, when Lucas wasn’t doing well and we were afraid to go home and leave him. I remember nights where we waited in two hour increments for the next blood gas to determine if he was going to have to go back on the ventilator again (they would test him, and decide to “hold” because it wasn’t better or worse, then say they would test him again in two hours… so we’d wait another two… teetering on a number that would send him back on the vent). Then there was the night he was so out of sorts and crying uncontrollably (which later turned into meningitis). That was a very late night too. It is amazing how all this can come flooding back like it was yesterday.
We don’t have the results yet, we will find out next week at our follow up appointment with the Pulmonologist. At first I thought that this would just be a formality, something to check off the list and they’ll drop it (and hopefully get rid of the monitor at home)… but after being there last week, I have my doubts and am frankly a little worried. When the technician put on the nasal cannula, I said “why is that necessary? He’s not on oxygen at home, why would he need it now?” He replied, “We won’t actually turn on the oxygen for the first four hours, if we see that he’s dropping his saturation levels after that, we’ll give him some help.” So, in the middle of the night, he came in and turned it on, then came in several more times to bump it up. He was almost at the max level when we left in the morning. Of course, the guy wouldn’t tell me anything, said he wasn’t allowed to discuss it, just that “the doctor ordered it.” Apparently there was some doctor there that night monitoring his activity and decided it was necessary. I’m fearful what that means, I sincerely hope that it does not mean we are going to need to hook him up to oxygen at home. I guess we’ll see.
We met with GI this week and got a good report. She was happy with his weight gain over the last six weeks and his reflux is MUCH more under control. He has been noticeably a lot more comfortable at home. We still have to keep him on a higher 24 calorie formula for a while (normal formula is 20 calories) because he doesn’t take the volume that a typical baby of his size might take.
So, Monday night was his first night to sleep through from 11 to 6 am, yippee! I’ve been working really hard this past week to get him on a napping schedule to make that happen at night. We were so excited, but that was quickly dampened by the GI doctor that said the next morning, “I don’t want him to go more than five hours just yet (due to the low volume he eats).” She wants us to make sure to now wake him up during the night to feed at least once . She’s afraid he will get dehydrated if he goes more than five hours right now. Not good for two working parents striving to get to this level and get some sleep! But, she said in about two months she’ll be ok with spreading it out.

I’m saving the best event for last… we had a visit last week from OT and the new Vision Specialist did her assessment, which were on the same day. First, the OT said over and over how much progress he’d made. She said she was blown away at how much strength he had gained in just two weeks. He is holding his head up and rolling over part of the way on his own, looking midline on his own (something we’ve been working hard at), and she said his stomach is now strong to the point that she can see his muscles working. He really pulls his legs up and uses those muscles now. This is a HUGE step from where he was just a few weeks ago, and means that he’s starting to catch up, as preemies have such low muscle tone and these things can take a very long time (or never, as the case may be). Of course, I was beaming with pride as she was gushing over his progress.
Then, the vision specialist came in the afternoon… I feel like I should refer to her as an angel. She was so incredibly kind, and gentle, and delivered hope to us that day. I don’t think I could even put into words right now what she did for me that afternoon, as I’ve been consumed by worry about his eyes since the meeting with the neurologist last month. She is a special education vision teacher, who personally has been blind in one eye since birth. She has worked with children with vision challenges for over 20 years, and now only works with children three years and under. She understands the inter-workings of the brain and the eyes more than anyone I’ve ever talked to. She said, “Who better to understand this, than someone who has been impaired her whole life? And, I’ve seen children do some amazing things!” She said ophthalmologists are great, but they are only looking at the health of the eye… there is SO much more going on in his brain right now that we don’t know (that an ophthalmologist won’t even speculate on). She said it is really great that he does not have ROP, that the challenges from ROP can be far worse than the Optic Atrophy that Lucas’ is faced with right now. She told me story after story of babies she’s worked with, with similar symptoms as Lucas… babies that appeared not be able to see, with Atrophy, but over time were somehow able to rewire and recover from whatever was causing the impairment. She said one in particular (with hydrocephalus) they swore could not see at Lucas’ age, that now at three years old, you would never know she had a problem.

She said he may never have perfect vision, but to get him to 'functional' was a definite possibility. I said, "Who cares if it is ever perfect? We just want him to be functional and I just want him to be able to see beautiful things on some level." (It is interesting that she would volunteer so many stories to me, as if she knew this is what I needed… so many times I have asked doctors to just give me one story—just one child that they knew that had overcome—that was all I ever asked for, this is what I needed to give me hope. I don’t need a hundred stores…just one).

The first thing she said as she picked up a busy black and white toy that I had hanging on his chair was, “he probably could care less about this thing, huh?” I said, “Yes, he won’t look at it and I’ve been very concerned” (after all, the ophthalmologist told me to use it, and get close with our faces). She said, “this is too much for him…he can’t process it.” She then picked up one of the puppies that has always hung on his chair and placed it closely to his eyes, moving it slowly… and, he looked at it!! At one point, he even grabbed it (which could’ve been an accident, but we’re going with it)! She said she couldn’t be positive without more time with him, but she thinks he’s seeing it and that he’s partial to its color or shape (and some babies prefer solid colors with linear shapes—the puppies have long legs that hang down). She said in her work, she has noticed that some babies will end up being partial to one of the first things they were ever introduced to. I thought that was very interesting because since bringing him home from the hospital, he gets so excited sitting in the chair and hits the puppies (since learning about his eyes, I figured he must have been hitting it from reflex or by accident… but now I believe he was seeing something there)! I just wanted to hug her as she was doing this exam, and tell her what she had done for me… she was so positive and hopeful! I actually had to leave the room at one point because I couldn’t hold back the tears, and didn’t want her to see me so overwhelmed with emotion over a silly vision test.

She gave me advice about how to help him see simple things, like this puppy or other solid colored items, how to adjust the lighting to make it better for him, to sit towards a light to illuminate my face while holding him instead of having a window or light behind me (because it is difficult for them to see the object in front of them with distracting light behind) … ways to keep from overstimulating him, etc. Easy overstimulation is the biggest thing we have working against us right now, even if he can see something it is hard to get him to stay on it for more than a second or two. She encouraged me to try to work on a couple minutes of him looking at my face each day (not necessarily eye contact because faces can be really overwhelming)… but to be ok with just that, and not worry that he’s not looking our way more. I have noticed that when he does look at me, the minute I say anything (even if in a soft voice), he looks away immediately, as if sound and sight are too much together (which she agreed is probably happening with him). She said to just let him try to focus on my face for a couple of minutes, and let it go at that. Then continue talking, singing, carrying on with him in other ways for stimulation, but don’t expect that he’ll look at me during it. And, that it is ok right now, it will be a process.

She qualified him “into the program” and will be visiting every other week for now. She visits today and I’m so excited! We have a few things in question with him… determining what he’s able to see, his constant avoidance, and the effect of the hydrocephalus on the downward gaze. She kept saying how amazing the brain is, and that every time his brain makes a new connection and finds new paths, his vision is impacted and is constantly improving. She really felt that with time, he will improve (and with her help and giving him the right stimulation, I really believe that to be true…I just feel it). We know absolutely he can see light, as he turns to look at it and tends to fixate on it. She said it is because it is the easiest thing for babies (especially impaired) to look at. She enforced that he should never look at the TV though, that it is very bad for development (as a matter of fact, has some pretty strong things to say against Baby Einstein and any kind of TV exposure to developing infants).
One last thing to mention since I am talking about brain wiring… Lucas is now noticeably using his left hand!! This is so exciting because the neurologist stated many times to us that she feels he may never have use of the left side (due to the massive damage on the right), or that he may have some level of weakness or CP on that side. But, you just never know what new connections the brain is making. For weeks, he’s been favoring his right side, getting his fingers in his mouth with that hand, and we’ve been concerned seeing how much favoring has been happening. But now, he is slowly gaining control of that left arm and bringing it up to his mouth. Its pretty cute, he gets it most of the way up to his mouth, but can’t quite get it in there… then he takes his right hand and pushes the left hand the rest of the way in. He’s obviously weaker on that side, but it seems like he is doing the exact same things with that arm as he did with the right about four weeks ago… as if it just took longer for the brain to connect and catch up for that side.

I think that’s it for now (another long winded update)… we’re really looking forward to some down-time with Lucas during the holidays and excited that some of Bran’s family are coming this week to visit (Jimmy, Joanne, & Justin; and Seth, Mary Ann, & Madalyn). We have a big day planned with the kids and his parents on Saturday. The holidays are going to be extra-special for us this year! I couldn’t say it any better than my Mom did in an email to me the other day… “Thanksgiving is this week, and we have a lot to be thankful for this year. I thank God for Lucas every day.”

November 1

I’m way behind again on an update… we’re all doing well and our trip to Ohio was really great! I’m so glad we had the opportunity to go before I had to start back to work. Lucas made the drive without any problems and was an angel for both trips there and back…he slept most of the way and when he was awake, he was quiet and content. We made the drive on Friday night (10/19), spent the night in Columbus to see a few friends on Saturday, then went on to my parents two hours from there to spend the rest of the week. It was wonderful to see everyone! The only problem for me was that I hardly got any time with my boy because someone else was always holding him!! J Lucas got to see his Grandparents, met his Great-Grandparents, his Aunts/Uncles, Cousins, and lots of friends. We stayed very busy! My nephew Jake (10) was pretty excited about meeting his first new cousin. He was constantly asking to hold him, play with him, feed him, and dress him in OSU clothing! Lucas received lots of Ohio State things on this trip from his relatives… something Bran was not very excited about! Bran’s Dad asked him if Lucas got a bunch of Ohio State stuff, when he said “yes”, Danny said, “ok, well… we’ll take care of that!” Ha!

Everyone’s love and excitement to see Lucas was more than I could have imagined. A friend of my mom’s who I’d never met made a special point of dropping by the house because she said she “just wanted to hold a miracle.” (It brings tears to my eyes every time I think of those words.) She told me how she had been rooting for him all these months, reading the website… was sad on days that things were tough for him, and would come into work excited on days that he did well, such as cheering “Yeah! He’s off the oxygen today!” I will never get used to hearing these stories and being so touched by everyone’s compassion and rallying behind him. I also learned last week that my niece, Ashley, walked in the March of Dimes event with her sorority in the spring and raised over $10,000, and they continue to be involved in their events year-round. She showed me a picture of them with their sign that said “We walk for Lucas.” With everything going on with us over the past several months, I didn’t even know that she had done this. Ashley, that really meant a lot to Bran and I… thank you so much! As I’ve said before, we can’t wait to walk again next year while we push Little Man in the stroller.

I have a lot to update from the last three weeks with all of our appointments. We had four appointments at Children’s before we left for Ohio and one last week. First we saw a Specialist in the Developmental Clinic to assess his progress since leaving the NICU, and to guage how he is doing developmentally. They did a similar exam as the one done by the Early Intervention OT back in September, but this is part of Children’s program. To my surprise when I walked in, they said that a doctor from the NICU always teams up for the assessment. So, I enjoyed getting to see Matt again, one of the fellows that oversaw him for months. Matt was at GW during the early days when we were dealing with the initial CT scans and he was running the reports back and forth to the neurologist at Children’s trying to decide whether he should be transferred. He was also at Children’s the last couple months and was the one that called me in the middle of the night to break the tough news that Lucas tested positive for meningitis and that they had intubated him. I first was asked a lot of questions from Matt about life at home, feeding, sleeping, medicines, complications, follow-up appointments, etc. I could tell that he was pleasantly surprised at how Lucas was doing. They were pleased with his weight gain and how well he had settled into home. He kept saying “I have to tell you, Lucas looks so great… I mean, he really looks good!” He told me that the nurses at GW Hospital asked him about Lucas a lot (because he still goes back and forth to that hospital), and he said they were so excited to learn that he pulled through and went home, without oxygen, and doing well. He said, “you have to understand that many babies leave their NICU for Children's, and they are so sick to need to come here, and unfortunately many don’t make it.” Sometimes we forget all the odds that he really beat and how many people he has surprised. I don’t think science or religion can totally explain why he is here with us today… I believe it was a combination of both.

The developmental doctor then did her assessment which was ok, not great. He didn’t respond much at all to visual stimulus, which was concerning to her. We talked about the fact that he doesn’t seem to focus in on anything, looks away a lot, and seems to get overstimulated. She gave me some advice for ways to settle him down and to help stimulate him without going overboard. She said not to use an activity gym because it is too much for him right now. I’m supposed to still use it to dangle toys, but cover the mat (and all its busy-ness) with a blanket, and only hang one toy. Hopefully then, he’ll start to be able to zero in on one thing at a time. We also went over the list things OT is helping us with for strengthening, trying to get his head midline, etc., and she gave me some more things to do with him. She also noticed that on his left hand, he tends to pull his thumb in tightly, and told us to stretch it out every time we see him doing this. I think all these things will just take time… every week we see some improvement, and he’s getting stronger each day (he is SO close to holding up his head).

The next appointment was with Pulmonology. This went a lot better than the first meeting with her last month. She said his lungs sounded better and she reduced his nebulizer treatments to one medicine, once a day (which is easier for us to finally be reducing the number of meds). She reinforced the risk to him in the upcoming cold and flu season and advised how to keep him safe. She said the minute we see any signs of a cold that we need to start using the nebulizer with the other medication three times a day. Lucas got his first RSV shot before we left for Ohio (the first of a series of five). RSV is the biggest risk for him, which would definitely land him back in the hospital if he gets it. Hopefully, the shot will keep his risk to a minimum. The RSV shots are expensive and have to go through strict approval through insurance companies ($1000 per shot...ouch!!). Luckily we had no problem getting ours approved for this year. Although the overall prognosis from the Pulmonologist was positive, we don’t get to kick the dreaded apnea monitor just yet. We still have to attach it to him at night because she is still seeing abnormal breathing and some apnea. It never goes off though, so the apnea episodes are not long enough to sound the alarm. She is still insisting on the sleep test though (wants to identify exactly why this is happening)… we are scheduled for this on November 15, where we’ll spend the night at Children’s with him attached to many wires measuring his breathing and brain activity. I’ve heard that babies are usually on these monitors for three months, so fingers crossed that after this test this will be the last month in dealing with it!

We saw neurology the following day, Dr. Chang. She has been following Lucas since he was brought to Children’s in May. I have to say that I despise meeting with her! I like her as a person, but she is a little too ’tell it like it is’ for me to be comfortable meeting with her. I noticed as I was sitting in her office waiting for her to talk during the examination, I had this knot in my stomach, literally feeling like I could throw up. After we got through the hello’s, I found that I didn’t want her to speak at all, I didn’t want to hear her give me any bad news. I have left too many family meetings with her in tears, feeling pretty low after hearing her diagnosis, as she always feels the need to prepare us for the worst. Sometimes I think I’d rather live in a world of not knowing what all the “possibilities” are, and just let the mystery unfold as the years come. I guess it is necessary for us to be prepared, but it only makes us worry about his future. I told Bran the other day that I feel like now that he’s out of the NICU, its like having the longest band-aid being pulled off as we look for signs of problems… slow and painful (as it will take 6 months to 2 years for things to unfold and determine his outcome).
When she was examining him, she centered in on his eyes and claimed that she didn’t think he could see. Of course, she blurted this out very coldly and matter of fact, as “can he see? I don’t think he can see.” I don’t think she had any idea the impact of how that might sound to his mother for the first time. I had to fight back tears as she said it. I knew he was having trouble with eye contact, but it never occurred to me until that moment that he could be impaired, because he had been cleared for ROP by the opthamologist in the NICU so we assumed we had no issues with his eyesight. I told her I didn’t believe this, that I could tell he reacts to light, and he makes a point of looking away sometimes when things are too much. She said he may be able to see something, but the question is what is he seeing, and is it processing normally (neurologically)? She claimed that she would expect some kind of impairment because of the damage, but at this point could not speculate the severity. (This is the same person that told us he probably would never take a bottle, so I’m going to try and stay positive about her comments.) She asked us to see the Opthamologist, which was already scheduled. We also discussed his tendency to look downward or to the side when stimulated with sound (he'll many times drop his eyes to the point that his pupils cannot be seen… as if it is all too much and he wants to black everything out).

Dr. Chang agreed that this could all be due to overstimulation, and there is a condition called SPD (Sensory Processing Disorder) that he is a high candidate for, which makes it tough for kids to process light, sound, and touch. She said imagine someone going into a warzone and how upon their return, things are not normal for them and can take a long time to desensitize... babies born extremely early have been launched into world of TONS of overstimulation that their little nervous systems were not ready for. She said it may just take time. She positively confirmed that his downward gaze hopefully will be temporary, that babies with hydrocephalus usually go through a neurological wiring phase for vision around four months. The brain is trying to figure out vision at this time and usually wires incorrectly at first due to the pressure, which can cause the eyes to want to look downward. She said that this should corrected by the time he is 10 months old, and that it is possible that it could get worse before getting better. I really hope that it is true, because when his eyes are up and looking straight ahead, he has the most beautiful, big, bright eyes. We get to see them more in the evenings, when he’s calm and relaxed, when the lights are low, or when he’s taking a bottle. It doesn’t happen often, but when we do get a few glimpses of him looking right into our eyes, it totally melts our hearts! I heard Bran’s mom say that exact thing the other day, when she got a few seconds of Lucas looking into her eyes.

Dr. Chang said his overall tone looked good, but felt that his left leg was a little more rigid than the other side and she showed me how to stretch out his hip and legs several times a day, which will help him out in the long run if he should have some difficulty on that side. She told me to just incorporate this stretch every time we change his diaper, and he doesn’t seem to mind it at all. “Dr. Downer” said it could be early signs of CP, but then again, could be just low tone from prematurity. We will go back to see her in six months, as well as another physical specialist in her clinic, and she said at that time we will know a lot more about what we’re up against. In the meantime, we will continue to work with him and pray for the best.

She did say some positive things… complimented too that he looked very good overall, and kept saying how far he’d come. She said it in a way though, like we all didn’t think he’d make it kind of tone… but I tried not to take offense because that is just her demeanor. The greatest compliment I've received from anyoen though, is she said could clearly see that we had bonded really well, and she could see how comfortable and secure he is when he’s in my arms and that it was “very nice to see.” She also reminded me of something she said to us months ago… that home life is everything for these little ones, the right stimulation, the right therapy, etc., will really make all the difference in how he will fare and utilize what he has to its full potential. She said there are many studies that show that the children with neurological challenges that receive early intervention services can do extremely well and often overcome large obstacles. I believe this wholeheartedly, and I know for sure that we will make sure he gets what he needs. I’ve always considered myself to be very resourceful…and I believe that this may have prepared me in life for just this moment.

We also saw the Plastic Surgeon, which I have to say was the easiest and most pleasant of all the appointments! This doctor was really great, very thorough and caring, wanted to know how the injury happened and all the details of Lucas’ story. He had that extra “something” in a doctor that makes such a difference, the extra compassion and concern that means everything to a nervous parent. He said the surgery to repair his nose is actually going to be really simple (which is not what we were told in the NICU…they said it was very complicated and we’d probably need to wait until he was 4 years old). We have been picturing something difficult, with skin graphs and a painful process. Lucas will actually have two surgeries… one next summer, and the other when he is a teenager (around 15). His injury from the C-pap damaged both the tissue between the nostrils, but also the septum was worn off half way back inside his nose. He said they cannot repair the septum until he is a teenager because it may stunt the growth of the nose. So, for now, they will repair the outside cosmetically next year (just waiting until he grows stronger before doing it). He said it is a very simple surgery, similar to how they repair a cleft palette (which they do all the time)… they will just make a small incision at the top of the lip where it meets the nose and stretch the skin to meet the piece he has between the nostrils. He’ll have two small scars across this area, which will only be visible under the nose. They will fill in the missing septum with an artificial substance that will eventually absorb into the body, then go back in later to officially repair it on the inside. We’re so relieved this will be relatively simple and not very painful for him… he said he’ll be in and out the same day, with only a couple days of recovery!

So that brings me to last week… we got in to see the Opthamologist last Wednesday, which was no big deal on our schedule until the Developmental Specialist and Neurologist started suggesting he was having trouble. Ever since these two doctors suggested that he couldn’t focus, we’ve been so worried. We’re now really watching his behavior, as if he’s under a microscope… trying to figure out if he’s really seeing or whether he’s just been looking in the direction of sound. We definitely think he can see light because of how he reacts to it, but he doesn’t seem to look at anything closely. It is confusing because he seemed to track the flashcard when OT came back in September (or now we question, did he?). Was he able to see before, but not now due to some rewiring? Will it repair itself? Or does he have some permanent damage that is just starting to appear? Unfortunately we will not know the answer to this for some time.

So, the Opthamologist said kind of the same things as my questioning… she doesn’t know because he’s too young, but she confirmed that he doesn’t seem to be interested in looking at anything. He did do the avoidance thing during the exam (which I think confirms that he can detect light)… every time she’d shine the light in his eyes, he’d look down… she’d pull it away, he’d look back up. Then, she’d shine the light in again, he’d look down to the point that his pupils were gone. This happened about 15 times in a row. It was kind of a little game of peek-a-boo… cute, but I’m sure a bit frustrating for her!! The good news is that his retinas are still attached and he is still cleared for ROP (retinopathy of prematurity)… which can still occur up to a year. She confirmed, however, that hid suffer damage to the central optic nerve (called Optic Atrophy) that was caused by the brain bleed. This is where the main optic nerve that runs between the eyes is damaged, or did not develop normally. This nerve sends vision communication to the brain. Apparently this was diagnosed while he was in the NICU, but neither Bran nor I remember hearing anything about it. She said there was so much going on with Lucas at the time the report was done, that was the least of our concerns. The bad news, is that the damage is not repairable… however, the good news, is that it is not severe damage and she said she’s seen many babies with this level of damage that can see fine (but again, there is no way to tell what is going on with him and how much this has to do with his difficulty now). She also said it has not gotten any worse since the first diagnosis several months ago. This was a relief because it means that meningitis didn’t deteriorate this nerve more. But, again, we won’t know until he’s a few months older, and maybe even 6 or 7 years old when he can tell us what he’s seeing. She wants to see him again in three months.

She did give me a little hope though... I think she sensed that I was struggling with being told about the damage, and that he wasn’t responding in the exam (perhaps because I started crying in her office when she told me it was irrepairable). I had that same pit in my stomach during that appointment as when we saw the neurologist, afraid for her to start talking. But, she said it is entirely possible that he is developing late in this area… that she might consider him a 2-month old for eyesight. Even though everything says he should be developmentally a 4-month old, that he was a very sick baby with neurological challenges, and that things may take a little longer for him. She said it is not unusual for a 2-month old not to be able to focus… that it is possible he just needs more time for this to come in for him. She wants us to continue to work with him with stimulating black/white/red toys, and with our faces 12” from his. She also agreed with the neurologist, that his downward and side looks are called a “preferential gaze”, and that it is likely this will correct itself. She said no guarantees, but she has seen this many times with hydrocephalus cases and that can change with time.

Although it has been difficult to accept that he may have a lasting problem with eyesight, we are holding on to hope that he will be ok. I’m back to saying prayers multiple times a day. We refuse to believe any diagnosis until he’s had a chance to show us. After all, he’s proven so many people wrong already! Based on all the talk about his eyesight, OT is going to center our activities for the next few weeks on this... and she is referring us to a vision specialist within the Early Intervention program. She also feels that he can see something as well, and we believe in him… we certainly refuse to label him “blind” right now. Sadly, the kids’ mother told Nicholas, Abby & Anna last week that their brother was blind. On Monday, Bran talked about Lucas’ condition and challenges, and said we are concerned that he can’t see right now. The kids came in on Tuesday asking, “Is Lucas blind?” They followed it up by telling us that their mother told them “your Dad said Lucas is blind.” I about hit the floor that they would have any confidential medical details without us talking to them, and that their mother would present it to them in such blatant & incorrect terms. We’ve made a point of shielding them from any medical diagnosis of Lucas because we are not going to point out deficits, and they are also too young for this kind of information (especially also considering that most of what we know is speculation and risk at this point, and there is absolutely no need to discuss it with a 4, 6, and 8 year old). If we had told them every risk we'd learned up to this point, there is no way they'd ever be able to process it... and it is not fair to them or Lucas. As a result of this being said to them, we had to sit down with them and explain that Lucas is ok, and that we just don’t think he can focus very well and that he's getting his eyes checked… that he’s not blind, he just might eventually need some help with glasses, or surgery, or might just need more time to grow. Abby asked later, “Is it ok if we still tell Lucas we love him?” Not sure where she got the idea that it was not. Very disturbing and sad, but it is unfortunately what we've had to deal with.

So, that sums up all of our appointments and we only have a couple left in November. The next batch of appointments will not be for another three and six months. I’m so glad this round is over and we can move on from dissecting all that he’s not doing, and just celebrate all the things he is doing. He’s growing and learning new things every day, which is very encouraging. He coos all the time and is constantly making new sounds that make us laugh! He’s found his fingers and is getting pretty good at getting them into his mouth… he actually starts by getting his hand up to his forehead, then slides it down until he can get his fingers into his mouth. So cute! He usually sucks on the middle two fingers, while the first and pinky fingers sit outside his mouth. It is really adorable to watch him do it… I’ve got plenty of pictures! I know I’m delayed in getting pictures up. I am trying hard to get them finished!

Compared to what we’ve gone through this year, life is definitely now moving forward! The “other” stress in our lives is finally behind us as of last week… We feel like we have a new lease on life, and feel more optimistic about the future than we have in many months. Although it is tough being back at work and without him during the day, I feel ok knowing he is in our home with a trusting nanny, and it is easy for me to stop by anytime to see him. I’ve never raced home so quickly after work! He is truly a joy (and so darn cute)… and we recognize every day how lucky we are to have him, and we are taking nothing for granted.