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.
Friday, September 21, 2007
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.
Thursday, September 6, 2007
A New Chapter -- Home at Last!
Weight: 8 lbs
I finally got some pictures uploaded. Warning...there are a bunch of them (and this is just a portion of what we've taken)! They are organized in opposite fashion as the previous albums, rather than starting with the most recent photos, this album starts the day he was discharged on August 29 through today. A lot of people have been asking to see pictures of the nursery, so there's a few shots of that. I've also added a couple new photos to the "Month 5" album, specifically for the Bama fans. Enjoy!Wednesday, September 5: Where do I start? We’ve been home one week today and I have to say that everything is going great so far. I’m sorry I did not get this updated before now, as I know everyone has been anxious to hear if he made it home and how things are going… but I guess this needs no explanation… new baby in the house!
Last Wednesday was full of some wonderful moments (the day of discharge). We were so excited to go get him, although very nervous, and the whole event seemed so surreal. I bought him an adorable “going home” outfit, but learned when I got to the hospital that it was WAY too big—they were shorts/bibs and the holes that should wrap around his upper thigh were all they way down to his toes. So he went home in a standard ol’ onesie, but oh well… nothing in this whole process has allowed me to plan anything! It was actually the second outfit we bought for this occasion, the first one being way too small. Four months ago when I bought his first set of preemie clothes, I bought a “NICU Graduate” t-shirt, thinking that one day he’d wear it home when he finally broke out of the NICU, but he ended up being in there so long that he outgrew it about two months ago!
It was a weird feeling to take off all his leads that were attached to the hospital monitors. It was liberating, but strange…. like, are you sure we don’t need these on him a little longer? He fussed a little when we buckled him in the car seat, but once we got him to the car, he was almost asleep before we even got out of the parking garage. I figured he’d be bothered by the new scenery and the car ride, but he seemed very comfortable and I think he really liked it. Leaving the NICU was very emotional for us, although we looked forward to this day, it was sad for us to leave the special people and to close the door on this chapter of our lives. So many people came over to say goodbye to us and Lucas. Sharon (the social worker that we’ve been working closely with) told Lucas, “this is a one way door, we don’t want to see you back here again. We only want to see you on the outside of the NICU, when you come for your follow-up visits!”
As I mentioned in my last update, it is such a strange feeling to finally get this part over, but the emotion of the past five months is now here staring us in the face. Friday morning, I took him in his room to rock him there for the first time (he has the best room in our house in the morning, getting tons of light pouring in the windows, and it is really serene early in the morning). He was just so peaceful and beautiful sleeping there, and I kept thinking as I watched him… How did they do it? How did these doctors and nurses get him HERE… from such a tiny, frail, little being when he came into this world? How can medicine and equipment take the place of a womb for such an early arrival? Who knew that they could even save a baby born that early. How did they get him to this point… laying in my arms being rocked in his room at home? I just sat there and cried, holding him close to my chest as I rocked him – tears of joy, as well as sadness, and disbelief that he was really there with me. Bran came in to sit with us, also taking in this moment, as we talked about how much we couldn’t believe he was finally here with us, how lucky we are, and how amazed we are with him (we have these conversations often). It is all so overwhelming, we are thrilled that he is home with us and is doing well, but we are just so emotionally raw from the intense roller coaster ride.
Enough emotion… overall, he is just great and we are really enjoying him! He is a very quiet and just an overall good baby. Maybe having a quiet baby is the silver lining to all of this! He hardly ever cries, unless you are changing his diapers, giving him a bath, or a few times he’s had a belly ache… other than that, he’s very quiet, he just gives you a few little adorable grunts when he’s waking up and wanting fed. They told us to expect that he’d have trouble sleeping in the new environment, but he didn’t have any real difficulty adjusting. He didn’t sleep for several hours when we brought him home Wednesday night, as Gran and GranDan were visiting, but after that, he slept great through the night (except for the wake-ups every 2-3 hours, of course). They also said that he may have trouble adjusting to a quiet household and to make sure there is a TV or radio on in the background when he’s sleeping, but we’ve already stopped doing that, he seems extremely comfortable at home, especially during the night. I honestly believe he knows he’s home where he belongs, away from all the chaos of the hospital, and is truly content.
We’re still working on settling into our routine, not getting a lot of sleep, but that is expected. We're trying to learn to be extremely germ-conscious at home for his preemie immune system. I'm so paranoid about him getting sick until he's a couple months older and his body can compartmentalize an infection (God forbid we ever have to go through a shunt infection again). We’re trying to wean into more nursing—less bottles, so Mom can get off the dreaded pump after five months! Its interesting when you think about it, most moms are trying to wean them onto a bottle and off of nursing at this age, but we’re working on just the opposite! He’s doing well with it, and every day we’re getting into more of a schedule. He’s still struggling quite a bit with reflux and is on two medications for this… so we’ve had to do a lot of outfit changes! Both Bran and I have been initiated already by getting soaked--he threw up down my shirt once, and all over Bran when he didn't have a shirt on! Ha. He has a nurse that comes into our home twice a week, and we go to the pediatrician once a week. Our pediatrician has been really great and has already called to check on him a couple times to see how he’s settling in. We talked to him every day for the first three days, and saw him again this morning. He said he is very pleased with how he’s doing so far. We also have a page full of various specialist appointments throughout the next month at Children’s… he’ll see the Pulmonologist for his lungs and the monitor, Neurologist for his neurological development, the Opthamologist for his ROP test, the Audiologist for another hearing screen, the Urologist to discuss repairing his hernia in the next couple months, and the Plastic Surgeon about eventually repairing his nose. He’s going to be a busy boy, but hopefully these will taper off after the first couple months as he starts to progress.
How’s the “at-home monitor” working out, you are thinking? Well, after three days of nothing but shrill beeping for false positives (due to shallow breathing, not because he stopped breathing), we made an executive decision to turn the @%$#*! thing off. He hasn’t had apnea episodes in many weeks, maybe even a few months, and the doctors were not even going to send him home on a monitor when they planned to discharge him a few weeks him before he had the last surgery. The only reason they decided to do it, was because he had some bradys right before surgery, but that was all due to the pressure in his head, that the surgery took care of. We really don’t think he needs to be on it, and the nurse even agreed that she was surprised he was on it given that an apnea episode was so long ago. We’re going to try to see the Pulmonologist earlier to see if we can get it officially removed (the machine stores in memory what causes the alarms, so we’re hoping when he sees what has been happening, he’ll agree with it).
My Mom arrived on Sunday and is staying this week, so needless to say Lucas is getting very s-p-o-i-l-e-d! He loves being held and spends very little time away from anyone’s arms, and he’s definitely won the heart of Grandma! It has been so helpful having her around and it is nice for me to get to watch them bond. Even if Grandma wasn’t here, I know he’d still be getting spoiled by Mom & Dad… after carrying the guilt of having him taken so early and missing him so much, I think he deserves all the comfort and arms wrapped around him that his little heart desires!
I will try to post an update about once a week, unless anything major happens. And of course, I’ll include as many photos as I can! I should have some new photos posted later today. I’m also working on a way to put a few videos up, so stay tuned for those in the coming weeks. I want to say one more time how much we appreciate everyone's support and love. It has been truly amazing to feel everyone around us, it is as if you've been right beside us holding our hands to get us through this. We know we are truly blessed.
I finally got some pictures uploaded. Warning...there are a bunch of them (and this is just a portion of what we've taken)! They are organized in opposite fashion as the previous albums, rather than starting with the most recent photos, this album starts the day he was discharged on August 29 through today. A lot of people have been asking to see pictures of the nursery, so there's a few shots of that. I've also added a couple new photos to the "Month 5" album, specifically for the Bama fans. Enjoy!Wednesday, September 5: Where do I start? We’ve been home one week today and I have to say that everything is going great so far. I’m sorry I did not get this updated before now, as I know everyone has been anxious to hear if he made it home and how things are going… but I guess this needs no explanation… new baby in the house!
Last Wednesday was full of some wonderful moments (the day of discharge). We were so excited to go get him, although very nervous, and the whole event seemed so surreal. I bought him an adorable “going home” outfit, but learned when I got to the hospital that it was WAY too big—they were shorts/bibs and the holes that should wrap around his upper thigh were all they way down to his toes. So he went home in a standard ol’ onesie, but oh well… nothing in this whole process has allowed me to plan anything! It was actually the second outfit we bought for this occasion, the first one being way too small. Four months ago when I bought his first set of preemie clothes, I bought a “NICU Graduate” t-shirt, thinking that one day he’d wear it home when he finally broke out of the NICU, but he ended up being in there so long that he outgrew it about two months ago!
It was a weird feeling to take off all his leads that were attached to the hospital monitors. It was liberating, but strange…. like, are you sure we don’t need these on him a little longer? He fussed a little when we buckled him in the car seat, but once we got him to the car, he was almost asleep before we even got out of the parking garage. I figured he’d be bothered by the new scenery and the car ride, but he seemed very comfortable and I think he really liked it. Leaving the NICU was very emotional for us, although we looked forward to this day, it was sad for us to leave the special people and to close the door on this chapter of our lives. So many people came over to say goodbye to us and Lucas. Sharon (the social worker that we’ve been working closely with) told Lucas, “this is a one way door, we don’t want to see you back here again. We only want to see you on the outside of the NICU, when you come for your follow-up visits!”
As I mentioned in my last update, it is such a strange feeling to finally get this part over, but the emotion of the past five months is now here staring us in the face. Friday morning, I took him in his room to rock him there for the first time (he has the best room in our house in the morning, getting tons of light pouring in the windows, and it is really serene early in the morning). He was just so peaceful and beautiful sleeping there, and I kept thinking as I watched him… How did they do it? How did these doctors and nurses get him HERE… from such a tiny, frail, little being when he came into this world? How can medicine and equipment take the place of a womb for such an early arrival? Who knew that they could even save a baby born that early. How did they get him to this point… laying in my arms being rocked in his room at home? I just sat there and cried, holding him close to my chest as I rocked him – tears of joy, as well as sadness, and disbelief that he was really there with me. Bran came in to sit with us, also taking in this moment, as we talked about how much we couldn’t believe he was finally here with us, how lucky we are, and how amazed we are with him (we have these conversations often). It is all so overwhelming, we are thrilled that he is home with us and is doing well, but we are just so emotionally raw from the intense roller coaster ride.
Enough emotion… overall, he is just great and we are really enjoying him! He is a very quiet and just an overall good baby. Maybe having a quiet baby is the silver lining to all of this! He hardly ever cries, unless you are changing his diapers, giving him a bath, or a few times he’s had a belly ache… other than that, he’s very quiet, he just gives you a few little adorable grunts when he’s waking up and wanting fed. They told us to expect that he’d have trouble sleeping in the new environment, but he didn’t have any real difficulty adjusting. He didn’t sleep for several hours when we brought him home Wednesday night, as Gran and GranDan were visiting, but after that, he slept great through the night (except for the wake-ups every 2-3 hours, of course). They also said that he may have trouble adjusting to a quiet household and to make sure there is a TV or radio on in the background when he’s sleeping, but we’ve already stopped doing that, he seems extremely comfortable at home, especially during the night. I honestly believe he knows he’s home where he belongs, away from all the chaos of the hospital, and is truly content.
We’re still working on settling into our routine, not getting a lot of sleep, but that is expected. We're trying to learn to be extremely germ-conscious at home for his preemie immune system. I'm so paranoid about him getting sick until he's a couple months older and his body can compartmentalize an infection (God forbid we ever have to go through a shunt infection again). We’re trying to wean into more nursing—less bottles, so Mom can get off the dreaded pump after five months! Its interesting when you think about it, most moms are trying to wean them onto a bottle and off of nursing at this age, but we’re working on just the opposite! He’s doing well with it, and every day we’re getting into more of a schedule. He’s still struggling quite a bit with reflux and is on two medications for this… so we’ve had to do a lot of outfit changes! Both Bran and I have been initiated already by getting soaked--he threw up down my shirt once, and all over Bran when he didn't have a shirt on! Ha. He has a nurse that comes into our home twice a week, and we go to the pediatrician once a week. Our pediatrician has been really great and has already called to check on him a couple times to see how he’s settling in. We talked to him every day for the first three days, and saw him again this morning. He said he is very pleased with how he’s doing so far. We also have a page full of various specialist appointments throughout the next month at Children’s… he’ll see the Pulmonologist for his lungs and the monitor, Neurologist for his neurological development, the Opthamologist for his ROP test, the Audiologist for another hearing screen, the Urologist to discuss repairing his hernia in the next couple months, and the Plastic Surgeon about eventually repairing his nose. He’s going to be a busy boy, but hopefully these will taper off after the first couple months as he starts to progress.
How’s the “at-home monitor” working out, you are thinking? Well, after three days of nothing but shrill beeping for false positives (due to shallow breathing, not because he stopped breathing), we made an executive decision to turn the @%$#*! thing off. He hasn’t had apnea episodes in many weeks, maybe even a few months, and the doctors were not even going to send him home on a monitor when they planned to discharge him a few weeks him before he had the last surgery. The only reason they decided to do it, was because he had some bradys right before surgery, but that was all due to the pressure in his head, that the surgery took care of. We really don’t think he needs to be on it, and the nurse even agreed that she was surprised he was on it given that an apnea episode was so long ago. We’re going to try to see the Pulmonologist earlier to see if we can get it officially removed (the machine stores in memory what causes the alarms, so we’re hoping when he sees what has been happening, he’ll agree with it).
My Mom arrived on Sunday and is staying this week, so needless to say Lucas is getting very s-p-o-i-l-e-d! He loves being held and spends very little time away from anyone’s arms, and he’s definitely won the heart of Grandma! It has been so helpful having her around and it is nice for me to get to watch them bond. Even if Grandma wasn’t here, I know he’d still be getting spoiled by Mom & Dad… after carrying the guilt of having him taken so early and missing him so much, I think he deserves all the comfort and arms wrapped around him that his little heart desires!
I will try to post an update about once a week, unless anything major happens. And of course, I’ll include as many photos as I can! I should have some new photos posted later today. I’m also working on a way to put a few videos up, so stay tuned for those in the coming weeks. I want to say one more time how much we appreciate everyone's support and love. It has been truly amazing to feel everyone around us, it is as if you've been right beside us holding our hands to get us through this. We know we are truly blessed.
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