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.