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
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.”
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