Follow Up Appointments

Weight (9/21): 8 lbs., 14 oz
Tuesday, September 25: I finally got the new pictures posted today. Everything at home is still going well… he’s gaining weight steadily, getting stronger, and starting to coo—which is the most adorable sound I think I’ve ever heard. We’re still having some challenges with his feeds, but we’re working through a lot of trial and error, and things are getting better.

We had a few appointments last week… the “Infants and Toddlers” Early Intervention program came to our home to do a head-to-toe assessment. They determined that he is tracking as a 2-month old (which is what we expected, as this is close to his adjusted age if he had been born near July 8). They did some tests to determine his overall development….with tone, range of motion, and whether he had the ability to track a moving object. They only rated him a “1 month old” in the gross motor skills category, because he is not yet able to lift his head (but he can catch up on this as we work with him). This is common among preemies because they have spent so much time on their backs and have very low tone from missing out using their muscles in the womb against the resistance of fluid. We will spend a lot of time over the next few years helping him to strengthen and catch up to his actual age… this program will work with him until he is three years old. The Occupational Therapist showed us a number of activities to do with him to help strengthen his back (which will also help him sit up later—another common major delay in preemies). Lucas will need to spend lots of extra time than most babies on his tummy (which he hates, by the way). The OT will be coming back once a week for the next month to assess his development and continue to give us activities for him. I’m so grateful that this program exists, as these early intervention activities will make all the difference in his progress in catching up to his actual age, and give him the best chance at recovering from the neurological injury, specifically if his left side ends up being weaker.

We also went to the Pulmonologist for the first follow-up. I worried about going into her office and admitting that we turned the apnea monitor off within the first five days of being home! I figured I’d get a lecture and somehow get more time added to our “sentence” with the monitor… but that didn’t happen. In fact, she informed me that the setting was wrong on the monitor and that there were 600 events in the time we had it on (actually 3 ½ days total). It was never supposed to have the “shallow breathing” alarm, which is what was going off 99% of the time. She said she didn’t blame me, that she would have turned it off too! So… we still have to use it, unfortunately… but she reduced it to only overnights. Now that the settings have been corrected, it is not bad at all… it’s a little bit of a hassle to hook him up at night (especially while being really tired), but it hardly alarms at all. She did see some concerning breathing patterns on the brief report she was able to pull from the machine, where he is doing “intermittent breathing”… he takes a few short breaths, stops breathing for a few seconds, then takes a large breath. She ordered a sleep test for him, so now we have to go down to Children’s and spend the night, while they hook him up to a bunch of wires (chest and head) and watch his patterns overnight. She is concerned that he may be having periods of apnea still and wants to determine its cause… whether it is centralized apnea (meaning the brain is forgetting to signal that it needs to breath, which is why all premature babies have apnea), or whether there is some kind of block causing him not to be able to breath (could be reflux, or in some cases could even be scarring from the ventilator). They just want to rule out the cause, so they can make any necessary adjustments to avoid it happening.

She stressed the importance of his weight gain (feels he should be gaining more) and explained that for the first two years of life, babies will grow new healthy lung tissue. The only way for this to happen is for him to have good, steady weight gain. If he reaches two years old and has not gained weight well, then his lungs will not have as much healthy tissue as their potential. She reminded me that he does have some chronic lung scarring (which is known as BPD- bronchopulmonary dysplasia) and of his risk of infection this fall with RSV season (which he will start a series of immunization shots in October). We are going to need to be very careful with him over the next six months, as babies with BPD are more susceptible to respiratory infections such as the flu, RSV, and pnemonia. When they come down with an infection, they tend to get sicker than most children do. She requested than Bran and I both get flu shots, as well as all the children. They also prescribed nebulizer treatments at home (of two medications) twice a day. He was getting these around the clock in the hospital, but when he was discharged, they decided we did not need to continue them at home. But the pulmonologist decided that since she sees some apnea and irregular breathing, that we need to give these. It is a mist administered through a mask, both medications take about 20 minutes… one opens the airways, and the other keeps the tissue from clamping down. This now makes five medications for him every day… keeping track of all these medications and the times administered is getting a little taxing, but hopefully we won’t get any more!

We also discussed his reflux as it relates to difficulty breathing (which even with two medications, he is still experiencing quite a bit). She referred us to meet with the GI specialist to discuss his treatment, as well as overall nutrition and calorie intake (especially in light of all the digestion problems he’s had since he’s been home). Our pediatrician is also on board with this approach (getting a GI involved), so he’s helping us get our appointment time moved up in the clinic. Just add one more specialist to the list (this makes about 7)... but we're all for having his reflux and nutrition administered by the specialist rather than the general pediatrician.

Going to Children’s was harder than I thought it would be last week. I was actually excited to take him to his first follow-up appointment, but once I got there, it was tough to be there again for a couple of reasons. It reminded me of our difficult journey there day-in and day-out, but it was also hard to see all the children going to their appointments during the day. When we visited Lucas in the NICU, it was almost always at night, so we didn’t see the magnitude of people that come into that place for all their specialist appointments during the business day. You see everything… children with various lifelong illnesses and disabilities, you see children that can’t walk—whether they are three years old, or ten years old. It just really breaks your heart, and you can’t help but wonder where we will be in a few years. We’ve kind of had a false sense of security since he's been home and doing great... that everything is behind us, but going back to Children’s and looking through a different set of eyes, brings his fragile medical condition back into reality. We are now members of an entirely new community. Seeing the pulmonologist and getting her less than positive report certainly didn’t help with the overall feeling.

But, we’re not going to let that one appointment get us down, especially because Lucas has already proven them wrong on several occasions. The one thing we’ve learned in our unplanned launch into the medical world, is that all doctors have their own delivery method and not to hang on the words or demeanor of one. That it only takes one doctor with a positive approach to turn everything around, or to watch Lucas do something that doctors were skeptical about, to make us forget the words of the “Dr. Downers”. That being said, even as we had the discouraging appointment with the Pulmonologist, we saw the pediatrician the next day… who had nothing but good things to say… that his tone looked great, that he could really see improvement in his strength and overall appearance, and that he was impressed with his weight gain. He said if he continues on this same path each week, he will be very pleased. We go back to Children’s tomorrow to get a CT scan and a follow-up appointment with the Neurosurgeon to make sure everything with the shunt is functioning properly. Hopefully it will be with Dr. Yaun, as she is always positive and a breath of fresh air!

Lucas is certainly getting stronger, he’s becoming difficult to burp on our laps because he pushes with a lot of force with his legs and back as soon as you try to bend him forward. We’re working on the head thing, he’s still pretty wobbly, but we work on it several times a day, and little by little he’s gaining control. I feel bad "working him out", especially when gets frustrated and cries (and we stop), but we'll continue to work on what he needs to move forward. He also fights like crazy when you give him his nebulizer treatments, trying to knock the mask off… makes for a difficult time getting it started, but so encouraging watching him show increasing strength.

By the way, I’m almost finished with the video I’ve been working on for him, and hope to share it the end of this week. I’m really happy with the way it turned out.