February 2008

(Weight: 14 lbs, 10 oz)
Another long stretch between updates, sorry! I am finding it challenging lately to find time at the end of a long day to sit down and write! And just when I think no one is really checking the website anymore, we get calls or emails from several people saying “What’s going on? There’s nothing on the website!” Look for new pictures and videos to be posted this week, as well.

We’re all doing well and Lucas is still staying healthy through his first cold and flu season (thank God)! We remain very careful not to expose him to public places and have strict rules with the kids about hand washing and staying their distance when they’ve been sick, and so far it is paying off. Even Anna had strep throat while at our house for the weekend, and we nervously waited 10 days to see if he was going to come down with it. Thankfully, he’s showing a strong immune system so far… I’ve heard some horror stories from other preemie parents about their kids getting very sick, back in the hospital, from something that would have a normal kid down for just a few days. I have to say the kids have been really great with helping to keep him healthy! It is funny when Anna questions us when we pick him up, “Dad, did you wash your hands?” It makes me realize our hand washing/sanitizer obsession is sinking into them now!

Lucas is growing and learning every day… he is starting to look like a "little boy" and not our little baby! To see him sitting in his high chair is kind of surreal. He's still taking his time on milestones, but we’re being patient. I’ve stopped reading the email updates I get for his corrected age that say “Lucas is 6 months… he should be doing ” He’s a few months behind his corrected age of 8 months, but when he finally makes it to a milestone, we are excited beyond words. In January, he finally pushed up on his arms for the first time (something that OT has been working on with him for about 4 months). I’ll never forget it. Since his eyesight is still very weak, he’s not very motivated by a toy in front of him to look up, so I was laying on the floor in front of him trying to get him to look at my face. Nicholas was laying there next to me too saying “Lucas, look up here!” And he did it and held himself there!! It was awesome, and Nicholas was just as excited as Bran and I were. Bran and I both teared up, although Nicholas really had no idea how huge this was for us, he was just excited for Lucas to do something he’d never seen before. Now, Lucas lifts all the time and no longer fusses when on his belly, and even flashes a smile at us during it. You may be thinking, all babies go through this step of raising up, then crawling, then walking. But, it is different with him. When you are told that your son may never use his left side, or may never walk, with images of a wheelchair… these little steps for him are so big! Now, we’re working on sitting… no breaks for him!
I have to talk about Nicholas for a second, thinking of that day. He’s always been very smitten and extremely loving with Lucas… but he’s grown even more amazing with him lately. Since Lucas is now more responsive and plays (versus the infancy stage of just eating and sleeping), Nicholas has taken a more active role with him. Not only is he constantly playing with him by tickling to get him to smile and laugh, but he now does his OT exercises with him. It is the sweetest thing to watch. He has picked up on watching me do them with Lucas – stretches with his arms and legs, helping teach him to roll, and helping position his arms correctly while on his belly. The other day Nicholas had him in his lap and Bran was in the kitchen getting dinner ready… he turned around and Nicholas wasn’t on the sofa any more and couldn’t see him. When he turned the corner, Nicholas had spread out the blanket and moved him to the floor, and said “I’m down here, doing Lucas’ exercises”… and he was there doing his stretches. When Nicholas gets him to do something, he gets so excited, “Dad… Angie… come watch!”

Nicholas also asks to go into Lucas’ room all the time to watch him sleep. Usually they are not allowed in the room when he’s napping, but sometimes we let them slip in there to see him. Nicholas will lay his head on the side of the crib and just stare at him for 15-20 minutes. Again, the sweetest thing in the world to see. We have to be careful letting Anna in there because we’ve found her actually “laying” with her whole body on the top of the crib (which is about 4" wide)! If we’d let her, she’d crawl into the crib and lay next to him! She's actually asked if she could. Abby and Anna are still great with him too (often fighting over him), but I just had to point out how emotional, protective, and a little teacher his Big Brother has become. He told us the other day that he “loved Lucas more than anyone… even more than Angie.” I asked him if he loved him enough to change his next diaper… he quickly replied, “uh, no!” Ha!

On to the medical stuff and our appointments the last couple months…

His eyesight is still our biggest challenge. We saw the ophthalmologist and confirmed that everything with the “health” of the eye is still ok, which is good news, but the bleed has caused a lot of problems with the visual signals within the brain. We finally have a diagnosis for his challenges—CVI (cortical visual impairment). Years ago, they would classify kids with CVI as cortically blind and kind of write them off… but today, with the help of vision therapists and an optimistic approach, they know that it is possible for the brain to rewire to improve over time (as I’ve talked about in previous updates). All we can do now is wait. We know that he can see light and movement and will bat and can grab things in front of him, but we can tell that he really struggles to lock on to anything for more than a couple seconds. I read something the other day that said having CVI is like looking through a piece of swiss cheese – you can’t really focus on anything, but you can definitely catch it if it is moving. So he can definitely see, its just anybody’s guess as to “what” the image looks like to him. And when he struggles to hold a gaze, you wonder how cloudy or distorted the image is to him. How functional he will be, we will not know for a couple of years, it is a very SLOW process with good days and bad days… but the brain is making new connections and rerouting these signals every day. We’ve already seen improvement, so we hope it will continue. We remain optimistic, and are SO grateful to have Beverly (the vision specialist) working with him every other week. She is amazing, and I feel a renewed sense of hope every time she visits. I find that I get down and discouraged when he won’t look at us, or his eyes cross, scared he may never see at a functional level… but then she comes in for an hour, and my faith is completely restored.

The most difficult thing about having his vision compromised is that vision drives movement. Babies get to the next milestone because they are typically motivated by seeing something that takes them to the next level (lifting up to see something, reaching, crawling to get a toy, etc.) So, this works against him in getting him to the next milestone. Kids with vision impairment or delays will be even later in reaching milestones. But the important thing, is he IS doing things, we just have to get creative and work a little more slowly. I just know that when he's 2 years old, we're going to look back at this time and forget when anything was achieved, because it really doesn't matter.
We saw the Developmental Specialist at Children’s in January. The only concern she had was the tightness in his legs and his significant favoritism for the right hand, but overall said she was very pleased compared to the last visit, especially his visual improvement and his ability to reach and grab. He doesn't really look at what he's grabbing though, he kinds of feels for it, which we are working on. He also does well grabbing and shaking things with his right, but not much activity on the left… so we are now working on isolating his hands to try and make him use his left hand. The more we can get him to do now with that hand and make new connections in the brain, the better off he’ll be in the future.

We saw the neurosurgeon in January and he had a CT scan to view the ventricle size, brain expansion, and shunt performance. That appointment was awesome… it showed that the shunt was doing its job and the brain has expanded significantly since September! In one area it had doubled in size! As I’ve explained before, the brain is like a sponge, and parts of it were being compressed by the enlarged ventricles and excess fluid. As the shunt begins to release this pressure, the areas of the brain that were compressed should expand back. With CT scans last year, we could not tell how much of the brain was destroyed permanently from the bleed versus compressed brain matter from the pressure. Over time, we are seeing a gradual increase in brain matter… meaning there is more there than they thought 6 months ago. The ventricles and fluid have both decreased a lot and are getting close to their normal size. There is still a massive area on the right that will never be retainable, but every bit of expansion we can see over time is great news. She also said that the 4th ventricle that we were worried about in September is not increasing in size, which means we do not have do another surgery. She is just going to keep an eye on it. Overall, our doctor was VERY excited to see him that day, and with his results!

Back in October, we had a sleep study done which revealed that he had severe obstructive apnea, but he had a cold which made us skeptical of the results. In January he saw ENT to determine if there is an obstruction. The doctor said he feels Lucas’ tonsils are too large for him, which would be the first area he would investigate (imagine that, something too BIG on Lucas). He wanted the sleep study repeated before going any further to remove the tonsils to see if it was the cold. We repeated the sleep study last week… staying overnight in the sleep lab, 12 electrodes hooked to his head/face, oxygen, belts around his chest and waist… the whole bit. I was worried about doing it this time because he is much more feisty than a few months ago. He did fight a little and tried to pull off the leads on his face, but we made it through. He held my hand the entire night, which was so sweet. If I tried to move my hand from his grip, he'd wake up and stir. Mom didn’t get much sleep at all, but he did good!

So… good news/bad news with the results of that. Obstructive apnea went from “severe” to “mild”. Severe means he tried to take a breath and was restricted by the obstruction over 12 times in an hour, mild means it only happened a couple times. This means he probably does not have to have the tonsils removed just yet, but they will keep an eye on it. The bad news is that he is now having several “central” apnea events, which is neurologically related. The test in October didn’t show this, and we were relieved that there was no central apnea to worry about, but now it is a huge concern. It means that the respiratory center in the brain is not signaling to breathe. This is common with preemies when they are tiny and in the NICU because their brains are not fully developed yet, but at 11 months old, it is not normal. It could be related to anemia, thyroid, or infection (and we have blood tests running now to check), but they feel with his neurological history, that something is more likely going on there. They are suspicious that the shunt may not be functioning properly (although everything was fine with it in January), or that there is another neurological issue. We were told to see our neurologist and neurosurgeon right away, and he is scheduled for an MRI this coming Monday, March 3 . I’m just hoping the culprit is the lesser of the evils… I’m actually wishing it is something related to thyroid or another problem that is treatable with pharmaceuticals. I’m worn out of the neurological stuff! I guess we will see. We have to go back for a third sleep study in a couple weeks to do a Titration study, which will tell us what level of oxygen he needs at night, if at all, to help him through the central apnea events.

The other appointments we had in this 3-month round were pretty good. GI was very happy with his progress and he is no longer on medication for reflux (he has grown out of it). They are concerned that he is not gaining enough weight so he has been switched to an even higher calorie cocktail—Pedialyte with 30 calories. He doesn’t really like it, so we’re dealing with a picky little guy right now. He IS gaining weight and no reason for alarm, just not quite enough for her to be satisfied. Some of this is due to introducing solids (which he is also not fond of), so he doesn’t want to eat as much as he should. Sometimes this is just a phase with preemies, or it is also common for sensory issues that we would need some professional help with. A speech therapist often works with babies for sensory/eating issues. Hopefully he’ll pick it up and this will not be necessary. We also saw the pulmonologist, which was positive, but we're still on the apnea monitor, nebulizer treatments, and oxygen, pending the results of the sleep study.

The last significant change to mention, is that Lucas has a new nanny that started with us in January -- Mirna. She is truly wonderful, and we are thankful and feel lucky to have found her and become part of our family. There is no doubt that she loves him like her own child (she has told me this on several occasions and it is obvious in how she is with him). When we have doctors appointments, she is just as anxious as our families to hear how they went… and tells me she will pray for him on days we’ve had worrisome appointments. They take walks every day to the park and she is religious with his exercises… and I know that the improvements we’ve seen in his motor skills this past month is due to all the work she does with him. She is constantly talking, singing, and playing with him… giving him the much-needed stimulation he will need to develop. Even our OT said last week, “Mirna is so great! I want her when I have a baby!” She is originally from El Salvador, and her native language is Spanish (although her English is really good too)… but mostly talks to Lucas in Spanish. I’m sure his first words will probably be in Spanish! It is really sweet to hear her talking to him and he responds so well to her… when we are getting ready in the morning, you constantly hear him squealing and laughing with her, which is a beautiful sound! She is also great when Bran’s kids are at our house, they always ask her to teach them things in Spanish. It kills me not to be with him during the day, but if I cannot, I’m really grateful he has her.

So now you can see why it has taken me awhile to find time for an update! This round of appointments has been a little exhausting. Other than the sleep study and apnea stuff, we are on a break with the rest of these specialists until the next round in April/May. Yeah! We are coming up to his first birthday already, which is a celebration and bittersweet—painful and emotional memories of last year are creeping up, but such intense pride that he’s made it this far! It has also been a challenge continuing to deal with so many medical issues and we still worry a lot about his future, but it has been such joy these past few months seeing his smile and hearing his little giggle. I’m still amazed at how he can make any hurt go away with that little smile!

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.”