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
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
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!
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