Weight (10/15): 10 lbs.
I know everyone is waiting to hear how we’re doing… I can tell that I’ve really fallen behind when I start getting emails from people asking for an update! J We’re still so touched at the number of people that rode the roller coaster with us, the number of prayers, and the love that we continue to feel. We couldn't believe that the website had 5000 hits by the time he came home, and is still visited so often! I also want to say thank you to everyone that sent things recently, we continue to get nice cards and gifts… it has been fun to check the mail! I can’t list everyone here and we will thank everyone individually, but I have to mention how appreciative we were to get the card and gift certificate from the 23 people at FPMI that have been rooting for Lucas (Danny’s associates in Alabama). It was so thoughtful of you all to send a gift for our son, especially not knowing Bran and I personally. The fact that you would care to follow his story and send a gift is really a testament to the Stisher family and how much Danny and Saundra are thought of.
It is getting tougher to stay on top of writing—we stay pretty busy throughout the day as we’re still on a three hour feeding schedule and having to hold him up upright afterwards for 30 minutes because of his reflux, then we have playtime and our therapy exercises a few times a day (and of course tons of snuggle time), lots of appointments, and on top of all of that I’ve had to spend a lot of time interviewing nannies for the past two weeks. Bran has also had a fair amount of travel for work lately too, so I’ve been solo in taking care of him and our list of appointments. Needless to say, sitting down at the computer and writing updates tends to get pushed to the side!
Everything is still going very well…Lucas is gaining weight steadily (10 pounds now, can you believe it?!) and so far we’ve been successful at keeping any sickness away (knock on wood), especially in light of the fact that one of the three kids has the sniffles or a cough every time they visit. I’m so paranoid about him getting sick (as the last time he got a cold, he was put back on oxygen)… but every day that goes by that he escapes it, I feel a sense of accomplishment and more confident. We just want him to get bigger and stronger before he has to fight his first cold at home, our biggest fear is something sending him back to the hospital (which is a true reality, the more I hear stories from other preemie parents that have had babies back in the hospital the first year).
He continues to do new cute things every day. He loves to sit in his bouncy seat and bat at the puppies hanging from the bar. When he does this, he gets so excited and fills our home with the sweetest cooing sounds… we absolutely love it! In fact, he’s talking away right now as I write this! It is hard for me to be looking at the computer screen and not be staring at him while he’s chirping and smiling. It just makes me laugh listening to all the different sounds he makes! I also got our first real smile two weeks ago (something I was really waiting for and working on!)… of course, I cried, and couldn’t wait to call Bran at work and to let both of our parents know! Since then, he’s been doing it more and more every day. I finally got a picture of it as you can see here (after more tries than I can count). He’s especially cute in the morning, I usually bring him in to lay next to us in the bed, and he gives us smiles and gets very chatty!
Our biggest challenge remains his reflux and digestion, and we’re continuing to try new things at the advice of the GI doctor. Just to clarify…many people think that reflux is just spitting up, but the true condition is when the stomach acid comes up half way and burns his esophagus (medically referred to as GERD). The nights are the worst, and tough for us to watch or listen, because you can really tell it is painful for him. It usually hits about an hour after he eats, and all of a sudden he wakes up from a peaceful sleep with big wide eyes, and start squealing in discomfort and kicking his feet. Sometimes it will last a couple minutes to ten minutes before he can settle back down, usually panting from the event. If he’s on my shoulder, sometimes he’ll thrash around and practically climb up my chest as it burns. I absolutely hate it!
Luckily we got in to see the GI doctor two weeks ago and I’m glad we were referred to this specialist so that they can focus in on this area and his overall nutritional needs (as the most important thing for his health to improve in many areas is to gain weight, gain weight, gain weight). The doctor changed his prescription from Zantac to Prevacid, which is a broader medication to control acid and was supposed to improve. For the first two weeks, however, taking him off the first medication made it worse and the squealing was happening about every hour through the night, as the new one didn’t seem to be working. So, this past Friday she told me to double the dose and thank goodness, I think we’re finally seeing some improvement.
She also told us to add a little oatmeal to his bottle to thicken the feed to make it less likely to come back up. With reflux, we have two issues to deal with…helping keep it down (which is why he takes Reglan to speed up digestion and move the food out of his stomach more quickly), and the Prevacid cuts down on the acid to eliminate the painful burning that he feels when it does come halfway up. We’ve had a few challenges…he didn’t like the cereal at first and started to refuse eating the second half of the bottle (which also may have been caused by the reflux during those two weeks where it was the worst…because after he would burp, he would be in pain and refuse the rest of the bottle). We backed off for a few days and now are starting it again in very small amounts to get him used to the taste. The oatmeal works wonders though (even though he’s only getting a tiny bit), when I went back to milk only for a few days, he was spitting up constantly.
I’m not going to go into details about his digestive issues (for reasons I don’t need to explain)… we’ve just had a lot of belly aches, crankiness, and trouble in that area since transitioning to formula (combined with the side effects of the medications), which the GI doctor is also helping us work through. Unfortunately, I could not keep up after all that pumping for six months and it was necessary to transition him to formula (which sucks because he never had a single GI issue when he was on breastmilk in the hospital)… but I guess it is better that we’re figuring out all of this now, rather than when I’m back at work, as we would have had to transition him eventually. The most important thing is that he received it the first six months and got him through the critical first few months born pre-term. I don’t know if I’ve really mentioned it in my updates before, but breastmilk for preterm babies is extremely critical and the milk of preterm mothers is actually very different than that of fullterm (with extra nutrients, proteins, and amino acids that preemies need). Our bodies are truly amazing, that what the mother produces is automatically adapted for the needs of a preterm infant.
We think he may have a milk allergy based on some of the things going on with him, so after 6 weeks with a milk formula, we’re now trying to introduce soy formula. The milk allergy may be temporary for the first year, and is not the same as being lactose intolerant, it just may mean that his system is too immature to handle processing lactose. This is what I mean by lots of trial and error… Its been exhausting trying to figure all of this out and making sure he’s getting enough calories every day! But if we can get this and the reflux under control (I think we’re close), I know he will be a much happier baby (it is the only time he gets upset… the rest of the time, he is a m-e-l-l-o-w little guy)! And, the sooner we can get there, the better he will eat and spread out his feeds past the three hour window (which will be great for Mom & Dad too)!
Our appointments at Children’s definitely went a lot better than seeing the Pulmonologist a few weeks ago. We saw the neurosurgeon and had a CT scan to check the shunt and the overall progress of relieving the CSF pressure in his head. Getting the CT scan was interesting… even though he had about 30 of them while in the hospital, we were never present for any of the scans. It was very intimidating, never seeing one of these machines before… and furthermore, having to place my tiny infant on this massive machine. He did great, it was Mom that was scared. I had to put him on this huge bed (a little larger than an adult hospital bed) and they had two metal sides that slid in to adjust to the width of his little body, then they tucked some padding at each side of his head to keep it from moving. I can’t even describe how little he looked, it seemed so unfair that he has to endure so many of these procedures. They gave me some sugar water to dip his pacifier into to keep him focused during the scan. They suited me up in a lead smock and left us in the room by ourselves, while the two technicians stared at us through a big glass window and talked to me through a speaker (I remember thinking it was just like on TV when they do an MRI). They turned it on and the bed moved slowly until his head was inside a huge cylinder that whirled around him taking images. It was very loud, and there were lots of lights flashing as it was spinning around his head. I thought for sure he’d be frightened (I would have been), but he seemed content with his pacifier. He was sucking on it pretty hard though, so maybe he was a little more bothered by it than I could see. Luckily, it only lasted for a couple of minutes and it was over in less time than it took to get him situated. I was happy when it was over, and I’m sure the next one will be easier because I’ll know what to expect. There was a little girl in the next room that we could see through the glass (2 years old) and she was kicking and crying not wanting to lay still… I asked the technician, “it probably gets harder the older they get, huh?” She laughed and agreed, that the infants are the easy ones!
Our appointment with the neurosurgeon, Dr. Yuan, went great… she was happy to see Lucas and kept saying how pleased she was with his progress and how healthy he looked. Everything with the shunt is good and the CT scan showed that there has been more brain expansion in comparison to the last CT taken in August (meaning the pressure from the fluid is still diminishing as it is slowly being relieved with the shunt and the brain tissue is expanding back and revealing that there is more healthy tissue there than what they originally thought a few months ago). There is still a lot of tissue that appears to be gone where the bleed occurred on the right side, and we will not know for another 1-2 years how much of the “missing tissue” is just compression due to pressure, versus loss of brain matter. Either way, the overall picture looks much more promising than it did in August, and also from May when we had the first view of the damage. She did say there is one area of concern… one of the ventricles is not reducing and looks like could possibly be expanding (there are four ventricles—and three of the four quadrants have shown a reduction). The way the shunt works, is that the tubing is placed in one ventricle and the four ventricles are supposed to communicate with each other… as one of them drains fluid, the others should compensate, keeping the overall fluid in the brain at the proper level. She said it is not uncommon for scarring to occur with meningitis, and that it is possible that one of the ventricles scarred and walled itself off from being able to communicate with the others. She is going to keep an eye on it (we go back in three months for another CT), and if the ventricle/fluid is the same size, then she will not worry about it. But, if it is larger in three months (meaning it is not draining, and continuing to build) then she would need to go in again and splice the tubing so that it is draining from two ventricles instead of one. Sorry if this sounds confusing, it is hard to explain without pictures. She told us not to worry too much about this yet, that it could possibly resolve on its own… but if not, a surgery will be necessary to correct it, which would be a 24-hour hospital stay.
The day of our appointments, we went up to the NICU to see our old friends since we had some time in between. Within minutes of me walking into the waiting area, word spread that we were there and it started a line of people coming to see him. Everyone kept saying “Lucas is here!” as they came to the window and out to the waiting room. It sounds like I’m exaggerating as I write this, but I’m not at all. It was so sweet and really warmed my heart seeing their reactions and genuine excitement to see him. We were happy to see Jackie again, who was the first one out the door, and then nurse after nurse came out to say hello (about 15 of them), including the transport nurse that met us at GW Hospital to move him to Children’s back in May. We saw a few of his doctors, and Sharon (the social worker) was so excited to hold and talk to him (they actually paged her from another area of the hospital so she wouldn’t miss him). They all kept saying how great he looked, and had gotten so big. Too bad his primary nurse Kristen has moved away, as we would have loved to have seen her (but we did get emails from her and Carrie the same week saying hello and checking in on him, which really touched us). I guess that happens when a baby is there for so long and wins over so many hearts. The people that work in that place are truly amazing. Another thing really stood out for me that day… one of the fellows, Tanya, was walking through the door with a team of doctors and residents for rounds (meaning she was busy)… but she made a point of stopping to talk to Lucas (really talking to him, smiling in his face and making baby talk)… she kept saying to me how great he looked. What was so special about this, is that she is one of the few that was there since the beginning (she was on staff at GW Hospital when he was born and I remember talking to her for the first time standing by his isolette a few days into his life (when everything was so new and we were scared to death)… and then she was on staff at Children’s during the latter half of his recovery and his discharge). You have to consider that when doctors are working on your baby as a patient, they are very clinical (they sometimes talk to your baby, but at a very surface level, and non-attached manner). It was so sweet to watch her really connect and be personal with him the other day, and to talk about how far he’d come. She should be just as proud as we are of him, because she was one of the people we are indebted to for getting him here.
His OT, Gabrielle, comes once a week to our house…she’s the sweetest girl and so good with him, and he really responds to her. He’s come a long way in a couple weeks...he’s almost able to hold up his head and is tolerating tummy time much better (actually, he’s figured out he can just lay his head down and go to sleep…ha). We are working on a few more things with OT… now it is eye contact and getting him to loosen up his shoulders and focus his head mid-line. He tends to turn his head to the side and looks upward, and rarely will look straight ahead (most likely due to all the time laying on his back in the hospital). His shoulders are pulled up too tightly, so we are working on stretching them downward and showing him more range of motion. He also gets overstimulated very easily with faces, and often looks away while you’re talking to him, so we’re doing a few things to get him over some of these sensory issues. She explained that preemies’ nervous systems are just so immature and it may take a bit of time to get him used to some stimulating things. It is interesting because when things are very quiet and still, he’s much more comfortable and able to make eye contact. Sometimes I wonder how much of this is from being a preemie versus just his personality, as I am very much this way and tend to get overwhelmed with lots of people and noise, and am much more settled and at peace when things are quiet and serene. We are also working on getting him to notice his hands and feet by bringing them together into sight at mid-line. This may seem like typical a baby thing that they will eventually do on their own, but the intent here is to help him strengthen, focus, and to “catch up” his time (considering that he is really 6.5 months old but at the developmental age of a 2-3 month old).
They also sent someone to our home to teach infant massage, which is proven to be particularly beneficial to preemies to enhance their growth, sleep, and socialization. She explained that this technique originally came to the US from India, where it was discovered in an orphanage where the children did not have the best medicine, nutrition or parental contact… but they were absolutely thriving and growing due to infant massage. He LOVED it…she actually said she was surprised that he took to it so well because most preemies initially show some signs of distress. He cooed during certain strokes, and at times was so relaxed with all of his little toes spread apart as I did his feet (so cute). I’m really excited to make this part of our routine, and so far he agrees!
Sorry for the long update, there’s so much to tell when I let a few weeks go by in between! We have five more appointments this week at Children’s, so I’ll try to let you all know later this week how they went. We are enjoying him so much, he just keeps getting cuter, and I personally fall more in love with him every day! I’ve read in several preemie books that it can take 6-8 weeks for mother and baby to truly bond when they come home after months in the NICU (it is typically two weeks for a normal birth). When I read this, I didn’t really believe it because I figured we were already bonded by spending every day together of his first 156 in NICU. We certainly had a bond through that experience, but honestly, something shifted recently here at home in the last week making me fall completely head over heels in love with this little guy. I know all mothers feel this, so I’m not saying anything that anyone with children doesn’t already know… but this has been a very long road and the most “non-traditional” way of getting here, and every day introduces new emotions. I loved him before he was even born, and it grew all the days we spent fighting for his life, but now it is something deeper than I can even put into words.
We’re excited to say we got clearance from the doctor to take a road trip and are heading to Ohio this Friday to spend a week, and we are looking forward to introducing Lucas to his many friends and family. We’re very much looking forward to seeing everyone! I'll have some new pictures up this week.
Monday, October 15, 2007
Friday, September 21, 2007
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.
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.
Friday, September 14, 2007
Home Where He Belongs
Weight: 8 lbs., 9 oz
I’m apologizing again for letting this much time pass between updates… I guess I shouldn’t have committed to updates once a week! J Things are going really well, he’s settling in just fine and we’re so happy to have him home. We’ve had some challenges with digestion and had about a week of some really cranky days, but other than that, everything is going pretty smoothly. My mom spent a week with us, and we’ve had a week on our own… I had gotten used to having Mom here to help out, especially when she would take him at 6 am, so Bran could get ready for work and I could get a few extra hours of sleep after being up a few times during the night. The morning after she left and our 6 am little Lucas alarm went off, I kind of expected her to be down the hallway! I think she loved me bringing him into her as much as I appreciated dropping him off for a few hours!
We’re still trying to settle into a routine and things seem to be getting more steady and predictable. The biggest adjustment for me is just dealing with this anxious feeling like I am supposed to be somewhere or doing something. This is probably a feeling that most working moms go through when they take a break from work, but with our lives being spent at the hospital during our free time for the past six months… it is really taking awhile to get used to having downtime. I’m so grateful to have this time with him though… learning the art of doing things one-handed, surviving on little sleep, and the sheer pride I now feel as I say “good job!” for getting out a big burp or a big diaper! I never would have imagined excitement in these areas!
He’s already growing and changing a lot in just over two weeks. It’s amazing the difference just a ½ pound makes in a little baby. The first week he was home, he wasn’t gaining weight… the doctor and visiting nurse were concerned that it was due to the many times he was throwing up, as well as he was not getting enough through nursing. So, we made an adjustment to supplement with more formula (with extra calories added), be more rigid in the schedule and feed him smaller amounts more often, and increased his dose for the reflux medications. The combination of these changes brought on 9 ounces of weight in less than a week! He’s creeping close to 9 pounds now and we can really see the changes in his face. He’s really looking like a big boy now and getting really strong. Feeds are starting to improve…he has not thrown up in several days, and we’re back to the original calorie intake on the supplemental formula because the increased density was causing him digestion problems. We’re now working on getting him to take more in one sitting so we can start to spread out his feeds (as they are sometimes every two hours for his preemie belly, even though his weight would indicate that he should be tolerating more and spreading feeds out to four hours by now).
He’s also becoming much more alert and interactive, he spends much of the day awake except for little catnaps, and by 8-9 pm, he’s totally crashed out for the night (except when waking up for drowsy feeds). We’re grateful that he’s not having trouble with this after the NICU, as many babies come out of there very confused between night and day and spend very little time sleeping. In the past week, we can tell he’s able to focus better on things, he’s finally making eye contact with us, which completely warms our hearts when it happens. Before, he would look in our direction or around us, and didn’t really lock eyes until the past week. We were getting a little worried that he had not started to do this yet… always wondering about a lingering effect of the neurological damage. I think it will be this way for us at every milestone, worried until he’s cleared it. So, we can relax on this now and enjoy looking into his eyes. I especially love it when he’s taking a bottle and has to turn his head to look at our face as he eats.
We had the kids the past two weekends, so they’ve enjoyed having him home, as well. There isn’t a moment throughout the day when one of them isn’t asking to hold him. Anna is a little wobbly holding him at her young age and needs a little help, but Abby acts like an old pro! Yesterday she held him while she watched a movie and every time we’d turn around, she’d have him in a different position… laying in her arms, then his head against her chest, then the other side, then they’d both be laying on the couch with her arms wrapped around him. Lucas was totally content even with all the shifting. It was so cute, and of course, we got lots of pictures! Being the fashion queen, Anna loves to pick out his outfits. She also keeps asking how old she has to be until she can carry him, and for some reason she’s stuck on the age of 8, saying she will be ready to carry him when she turns 8 years old… but we kept trying to explain to her that when she’s 8, he’ll be 4 years old, and as big as she is right now (it would be like Nicholas carrying her around). When she asked later why Lucas slept so much and Bran told her, “so he could grow”… she quickly said “wake him up, I don’t want him to grow any more, I want him to stay just like this because he’s just so cute.” Nicholas wasn’t able to hold him this weekend because he still has a lingering cold, but he spent a lot of time watching him and playing from a distance. He had him on the floor on the activity gym looking at himself in the mirror, and Lucas would kick and get all excited. I think Nicholas was enjoying it as much as Lucas was! We all took a walk to the park on Saturday and Nicholas begged to push the stroller. It was neat to watch, he was soooo careful and sweet with him, stopping every few minutes to make sure Lucas had his pacifier and was content for the ride. It was about a ¾ mile walk both ways, and he wouldn’t let anyone else take the stroller.
All in all, we’re adjusting nicely and other than a few testy days with a cranky baby, things are good and we’re enjoying him so much. Bran finally got to do the thing he’d been talking about for months… have Lucas on his chest while he watched the Alabama game on Saturday! I have lots more pictures that I’ll get uploaded in the next day… there’s so many, it takes some time to go through and pick out the best ones.
I’m apologizing again for letting this much time pass between updates… I guess I shouldn’t have committed to updates once a week! J Things are going really well, he’s settling in just fine and we’re so happy to have him home. We’ve had some challenges with digestion and had about a week of some really cranky days, but other than that, everything is going pretty smoothly. My mom spent a week with us, and we’ve had a week on our own… I had gotten used to having Mom here to help out, especially when she would take him at 6 am, so Bran could get ready for work and I could get a few extra hours of sleep after being up a few times during the night. The morning after she left and our 6 am little Lucas alarm went off, I kind of expected her to be down the hallway! I think she loved me bringing him into her as much as I appreciated dropping him off for a few hours!
We’re still trying to settle into a routine and things seem to be getting more steady and predictable. The biggest adjustment for me is just dealing with this anxious feeling like I am supposed to be somewhere or doing something. This is probably a feeling that most working moms go through when they take a break from work, but with our lives being spent at the hospital during our free time for the past six months… it is really taking awhile to get used to having downtime. I’m so grateful to have this time with him though… learning the art of doing things one-handed, surviving on little sleep, and the sheer pride I now feel as I say “good job!” for getting out a big burp or a big diaper! I never would have imagined excitement in these areas!
He’s already growing and changing a lot in just over two weeks. It’s amazing the difference just a ½ pound makes in a little baby. The first week he was home, he wasn’t gaining weight… the doctor and visiting nurse were concerned that it was due to the many times he was throwing up, as well as he was not getting enough through nursing. So, we made an adjustment to supplement with more formula (with extra calories added), be more rigid in the schedule and feed him smaller amounts more often, and increased his dose for the reflux medications. The combination of these changes brought on 9 ounces of weight in less than a week! He’s creeping close to 9 pounds now and we can really see the changes in his face. He’s really looking like a big boy now and getting really strong. Feeds are starting to improve…he has not thrown up in several days, and we’re back to the original calorie intake on the supplemental formula because the increased density was causing him digestion problems. We’re now working on getting him to take more in one sitting so we can start to spread out his feeds (as they are sometimes every two hours for his preemie belly, even though his weight would indicate that he should be tolerating more and spreading feeds out to four hours by now).
He’s also becoming much more alert and interactive, he spends much of the day awake except for little catnaps, and by 8-9 pm, he’s totally crashed out for the night (except when waking up for drowsy feeds). We’re grateful that he’s not having trouble with this after the NICU, as many babies come out of there very confused between night and day and spend very little time sleeping. In the past week, we can tell he’s able to focus better on things, he’s finally making eye contact with us, which completely warms our hearts when it happens. Before, he would look in our direction or around us, and didn’t really lock eyes until the past week. We were getting a little worried that he had not started to do this yet… always wondering about a lingering effect of the neurological damage. I think it will be this way for us at every milestone, worried until he’s cleared it. So, we can relax on this now and enjoy looking into his eyes. I especially love it when he’s taking a bottle and has to turn his head to look at our face as he eats.
We had the kids the past two weekends, so they’ve enjoyed having him home, as well. There isn’t a moment throughout the day when one of them isn’t asking to hold him. Anna is a little wobbly holding him at her young age and needs a little help, but Abby acts like an old pro! Yesterday she held him while she watched a movie and every time we’d turn around, she’d have him in a different position… laying in her arms, then his head against her chest, then the other side, then they’d both be laying on the couch with her arms wrapped around him. Lucas was totally content even with all the shifting. It was so cute, and of course, we got lots of pictures! Being the fashion queen, Anna loves to pick out his outfits. She also keeps asking how old she has to be until she can carry him, and for some reason she’s stuck on the age of 8, saying she will be ready to carry him when she turns 8 years old… but we kept trying to explain to her that when she’s 8, he’ll be 4 years old, and as big as she is right now (it would be like Nicholas carrying her around). When she asked later why Lucas slept so much and Bran told her, “so he could grow”… she quickly said “wake him up, I don’t want him to grow any more, I want him to stay just like this because he’s just so cute.” Nicholas wasn’t able to hold him this weekend because he still has a lingering cold, but he spent a lot of time watching him and playing from a distance. He had him on the floor on the activity gym looking at himself in the mirror, and Lucas would kick and get all excited. I think Nicholas was enjoying it as much as Lucas was! We all took a walk to the park on Saturday and Nicholas begged to push the stroller. It was neat to watch, he was soooo careful and sweet with him, stopping every few minutes to make sure Lucas had his pacifier and was content for the ride. It was about a ¾ mile walk both ways, and he wouldn’t let anyone else take the stroller.
All in all, we’re adjusting nicely and other than a few testy days with a cranky baby, things are good and we’re enjoying him so much. Bran finally got to do the thing he’d been talking about for months… have Lucas on his chest while he watched the Alabama game on Saturday! I have lots more pictures that I’ll get uploaded in the next day… there’s so many, it takes some time to go through and pick out the best ones.
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