Tuesday, October 6, 2009

Happy 1st Birthday Landon & Logan

Our boys turned 1 year old on Monday, October 5th. I made a video compilation of their incredible 1st year of life but the photostory file is too large to post on this blog so here is the YouTube link:


We lost alot of quality in converting it to YouTube so I apologize for that, I don't have the time to fix it right now. I will try to post again soon with a real update.

BTW, the black and white photos at the end are courtesy of Photography by Caitlin Domanico (http://www.caitlindomanico.com/) who came out to our home to take pics of the boys last month and did a wonderful job capturing just how special and beautiful they really are!!

Monday, June 1, 2009

It's Logan's World...We're Just Walking Through It

My dear sweet Logan – where do I even try to begin? I get quite emotional thinking about either of my miracle boys but just the mere mention of Logan’s name or a fleeting thought of him can sometimes reduce me to tears out of sheer pride and awe. It astounds me to look at him today knowing what he has endured throughout the past 8 months. For all those months in the NICU and even his first few weeks at home with us, I was so worried that his spirit had been broken and he may never truly recover from the emotional and physical trauma he suffered. I just couldn’t get my hands around the idea that such a small soul could tolerate the things being done to him in his first few months of life and then still learn to trust, bond, love and be loved. But my little boy just doesn’t know the word defeat – he continues to grow, learn and thrive and I feel as though with each day that passes, he lets us in just a little bit more or does something special to surprise and amaze us, even if its something as little as opening his fist and reaching out to touch a toy. For any other baby, and to any other parents, this may seem like an insignificant afterthought but for a baby with cerebral palsy who is constantly clenching his fists tightly shut, this is something on which we work very hard with him each day. It is just one of many daily struggles for him and us that he continues to overcome.

Ok ok, enough of the mushy sentimentalities. First and foremost, I must begin with the exciting announcement that YES, Logan has weaned himself OFF the oxygen!!! And it has shocked me how Logan has adapted to his new oxygen-free life - he has become an entirely new baby without that obtrusive cannula up his nose, the probe wrapped tightly around his foot or wires running all over the place. His personality really has blossomed over the last few weeks and it has been so emotional and uplifting for me to witness. As I’ve discussed in a few previous posts, for the first few months he was home, he didn’t really socially interact much with us and rarely ever smiled (unless it was at his angels who sit on our ceiling fan, will explain that one another time). Now he smiles and “talks” to us constantly and on occasion I have even been able to elicit a real LAUGH out of him, which of course just takes my breath away!! Lately, his cooing has even turned into a few discernable sounds, like “ma” or “ga” (goo-gaa seems to be one of his favs) which is another important milestone for him.

His favorite activity right now seems to be when you stand him up in your lap, talk to him and give him big kisses, he just adores it!! Whether it be on his puffy chipmunk cheeks, his hands and feet or smack on his big beautiful lips, he just can’t get enough!! On more than one occasion I think he has mistaken me for his bottle and given me nice big WET kissys, which are my favorite kind! He also loves to be tickled and of course I never miss an opportunity when he’s awake to get a good tickle in on his belly or neck. His whole body tenses up, his arms and legs flail out in the air, his mouth opens up wide and he lets out a precious little coo of delight while smiling (or laughing!) – it’s just priceless. Sometimes he just doesn’t feel like smiling so instead he’ll hold his breath and grunt and squirm until I stop and give him a break. Of course then when I stop he gets all excited and flails about as if to say “haha, I won Mommy – you couldn’t make me laugh” seemingly enticing me to do it again, which I always do until I get that beautiful smile.

He also enjoys being sung to, and this is often the only way we can get him to take his bottle anymore. Unfortunately, neither my husband nor myself are singing aficionados and sadly enough, I don’t know all the words to many nursery rhymes so more often than not, I find myself simply making up words and singing them to the tune of familiar songs. It’s great now that he doesn’t know the difference but I imagine I should probably learn the words to some songs soon so he’s not someday singing “Hush Little Baby” to his kids with lines like “and if that diamond ring don’t shine, mama’s gonna buy you a porcupine.”

Two of Logan’s favorite positions are reclining and bouncing – so it stands to reason that of course he LOVES his bouncy seat. Sometimes he just phases everything and everyone else out and goes off into a blank stare admiring his little lamb, star and moon that hang in front of him as he sits in it. It never ceases to amaze me the things that entertain small children and babies. Keep in mind, I promised myself I wouldn’t be one of those parents that just throws her child in a seat or swing every chance I got (particularly b/c I’ve read it can inhibit gross motor skill development) but when he’s really upset and I’ve done all I can to try to soothe him, I must admit the chair always does the trick - it has been one of our saving graces! And for that reason, I must thank my wise mom who encouraged me to buy it even though I was apprehensive about it. I must admit that now I bring that thing everywhere and use it more than I ever planned!

Logan bears a striking resemblance to Steve when he was a baby, it really is quite remarkable, and we often joke that he behaves just like him as well.
He has a tough exterior and may at times act like he just wants to be left alone, but deep down he is a big teddy bear (hence the reason I call him my Logi Bear) who loves to be cuddled and held. As I’ve discussed in previous posts, Logan is almost the complete opposite of Landon – he is content sitting back out of the spotlight and just watching the action, he doesn’t always need to be a part of it. Don’t get me wrong, he loves attention also and has certainly been fighting for more of it lately, but he doesn’t thrive on it like his brother does. On more than one occasion when Landon is “showing off” trying to get mommy’s attention by making lots of noise and whirling about, I have caught Logan just laying there calmly staring over at Landon with this quizzical look on his face as if he’s thinking “what is wrong with you and why don’t you just calm down”…it really is hysterical and a testament to their drastically different personalities.

Similar to Landon, Logan’s hair is also constantly changing – one day it appears brown, the next day black and the day after that, a hint of red. Unlike his brother, his hair actually lays flat on his head but parts of it are longer than others (particularly behind his ears) and it’s still so thin that sometimes he looks like a little old man when the strands of long hair aren’t cooperating and decide to stick out! Grandpa said he looks like a little Yoda, which absolutely made me laugh because it’s so true!! He has stunning big dark hazel eyes (or maybe they’re brown, I can’t decide!) and crazy beautiful long eyelashes framing them. Although we’ve been having some extremely serious feeding issues with Logan lately and he’s not gaining weight at the rate he once was, he is still a little butterball with lotsa chubby baby rolls, big love-to-pinch-‘em cheeks with a double chin and a hearty little belly to boot.

Unfortunately, Logan does not take after his brother in terms of his cry. When he gets angry, he lets you know it by belting out a high pitched scream (or a series of them) at which usually I just have to laugh (because I think everything he does is hilarious) but I imagine it probably scares and irritates the hell out of strangers or guests who aren’t accustomed to it!! Whereas it seems to take an act of God for Landon to cry, Logan isn’t afraid to tell us right away when he’s getting even slightly upset or uncomfortable and he’s not afraid to be overly dramatic about it either, he’s such a character.

Other things he loves: his baths, falling asleep with his head on my shoulder, his bink, sleeping (11 hrs. a night!!), the octopus on his play gym, his nurse Lisa from Pennsy, the animal mobile over his crib, organic prunes.

Things he hates: tummy time, sitting up for extended periods of time, blankets, his nasal cannula, Landon crowding his space, being cradled (he prefers being held upright over my shoulder), bright lights and loud noises.

Monday, May 4, 2009

All Things Landon

I was reading through some old blog entries and realized that because I only get a chance to update the blog every few weeks now that I often leave out the cute little every day details about the boys that really highlight their adorable and unique personalities that are truly starting to shine through. So today I’m going to focus on all things Landon and share some of my favorite things about him (and Logan's blog will follow in a few days)....

Without a doubt, the first thing that comes to mind when I think of Landon is his SMILE. Reason being is that he’s ALWAYS smiling or laughing. I suppose a lot of babies at this age are ridiculously happy but he is undoubtedly the happiest baby I’ve ever met! He has the most radiating and contagious smile and his eyes and whole face seem to just light up, it’s truly heartwarming. One would never guess that he was yanked out of safety and into the world 15 weeks early and endured months of IV’s, needle sticks & heel pricks, tubes down his throat or up his nose, being poked & prodded every 3 hours on the dot, blood transfusions, infections, eye disease, lung disease, heart surgery, and the list goes on and on. One would never guess that he was extremely ill with meningitis weeks before he was even supposed to be born. One would never guess that he had to come home on an apnea monitor and had (and continues to have) countless doctors appointments each week and month. He just breezes through each day enjoying everyone and everything in which he comes in contact.

He has the cutest little spiked blondish/brown hair (it still seems to be making up its mind as to what color it wants to be) and we often joke that it looks like he got a military buzz cut. It’s not quite long enough to lay flat on his head so it sort of sits straight up and sometimes it looks like he has a bad case of static electricity! He looks just like Mommy (and therefore Aunt Jill) and Pop-pop did when they were babies and most certainly inherited Mommy’s big forehead (and head in general – he’s in the 95% for head circumference for babies his age)! He has such soft smooth skin (as I suppose most babies do) and a pair of the most beautiful blue eyes I’ve ever seen, which are without question my favorite trait of his. There are no other family members we know of in either my or Steve’s immediate family with blue eyes so we had virtually ruled out the possibility of ever having a child with blue eyes and declared with solid certainty that both of them would have brown eyes. I’m not used to staring into anyone’s blue eyes (most of my friends don’t seem to have blue eyes either!) and I must say, I just can’t get enough of it, particularly given that he is ALWAYS staring back at me just sitting and waiting for me to look, talk to or play with him!!

That is a perfect segway leading into the second thing that comes to mind when I think about Landon: he just LOVES LOVES LOVES to be the center of attention and everyone must have their eyes on him at all times when he’s awake! It is the most precious thing – he will just sit in his boppy or swing and I can always feel his eyes on me (or he will kick me or “talk” to get me to turn his way) and as soon as you lock eyes with or begin talking to him, he just breaks out into this big smile and/or giggle and gets all excited and starts frantically waving his arms and legs! It just never ceases to make ME laugh! Often times, I have tried to put Landon in his swing so that I could focus on feeding Logan but have come to realize that this is just unacceptable for our dear Landon. He simply sits there swinging all the while staring intently at me. And then the pouting begins. And I mean bottom lip turned down with a little hint of whimper pouting and it’s just about enough to bring me to tears and of course I always have to jump up and go get him (and he knows it, I’m such a sucker)! He does this the entire time he’s awake. If I’m paying too much attention to Logan (which according to Landon means if I’m paying ANY attention to Logan), he does he same thing. I now have to carefully position him in his boppy right next to me when I’m feeding Logan so that I can continue to talk to him all the while. I’m beginning to think that sharing in any aspect may not be Landon’s forte in a few years.

Landon has the absolute sweetest softest cry. During the 3+ months time our boys spent in the NICU we were subjected to host of different babies screaming and crying at any given time (with the operative term here being screaming). Some of these babies had nails-scraping-against-the-chalkboard excruciating cries that, although I ached for these tiny little souls and the pain they were in, it sometimes made me want to rip my hair out and filled me with a dreadful sense of anxiety and foreboding. And I’m truly not just saying that because they weren’t my own babies because other babies we heard really did have what I thought were just adorable little cries. Landon’s cry actually makes me smile sometimes because it’s just so damn cute (and because often times I know he’s faking it just so Mommy will come pick him up and play with him)!! I can’t express enough how thankful I am for that (and the fact that he’s just so happy he rarely uses his cry!).

He seems to be learning new things every day - he can roll over from his belly to his back on occasion, though not consistently, and sometimes rolls from his back to his side. He absolutely LOVES both standing and sitting up and just refuses to lay back in his boppy anymore (I mean, come on, how's a guy supposed to check out the room and be the center of attention if he can't see everyone!). If we do put him there, even temporarily, he will try to do a sit up all by himself. We have started propping the boppy and sitting him in it so he always has a good view of all the action - this little boy doesn't want to miss a thing! We also recently began putting him in a little bouncy chair so he can stretch out his legs and bounce on them like he enjoys so much. He would sit in that thing for hours if we let him, he just can't get enough of it! And I must admit, it's a comforting sight to see him "standing" in his bouncy seat rather than laying in a boppy or sitting in a swing as I feel like they've been laying down for months (probably b/c they HAVE if you include the months they were in the hospital and the first few month or so after they came home since that's really all they could do!).

As I expect any mother would feel of her child, he is such an incredible gift from God and has brought purpose and joy to my life that I never knew existed. I'm not sure if I will ever truly get over the unfortunate events of my pregnancy and those traumatic 3 1/2 months they spent in the NICU but coming home to these boys every day has made every single minute of that ordeal worth it.

Wednesday, April 15, 2009


Sunday was the boys’ first real holiday that we celebrated together as a family at home (well, there was valentine’s day but I personally hate it and don’t consider it a true holiday)!! In the morning, we gave the boys’ their first easter bunnies, turned the tv off and relaxed and listened to jazz. Steve is adamant about ensuring they are both jazz fans and I certainly don’t mind because although I don’t particularly enjoy it, I think it’s necessary and beneficial to expose them to a large array of music as early as possible. In any event, in the afternoon we stopped next door and spent some time with Grandma and Grandpop and then we headed up to Aunt Kate’s house for our first of many holiday outings, how exciting for everyone! The boys’ certainly seemed to enjoy some new scenery instead of the same sage green walls of our family room and beige walls of their nursery!! Of course poor Logan slept through most of the day and missed out on all the action (though I don’t think he minded) but Landon was wide awake and provided much entertainment to all (along with my boisterous and comical neice, or should I say Princess, Gianna). He showed off during tummy time letting everyone oooh and aaah about how well he’s picking and holding up his head, I was so proud of him!

As usual, there is a lot to on which to update since it’s been another long 3 weeks since my last post. Enjoy!

Eating. Well, eating continues to be one of the greatest challenges we face in our household as we struggle daily with their reflux and trying to get them on a feeding schedule. Logan typically takes 8 ozs. every 4 1/2 hours and Landon is eating 4-5 ozs. every 3 hours (on a good day). The problems we deal with on a daily basis concern Logan’s reflux and Landon’s poor sucking reflex. They have both been diagnosed with reflux (and are taking zantac 2x a day) but Landon’s seems to be more under control now than Logan’s, as he only projectile vomits once every few days whereas Logan typically does it atleast once a day and sometimes more. We have to be careful to feed them slowly with a lot of breaks, burp them often and keep them upright during and after their feeds. We are having a tough time keeping them on a good schedule because often times we spend an hour feeding Logan only to have him vomit it back up 15 minutes later. Then of course he’s hungry again only an hour later because he just spit up half his food. We have tried putting rice cereal in his bottle to help it settle better in his tummy but it doesn’t seem to help. Landon, on the other hand, has an extremely poor suck reflex and often times tires out and falls asleep after only 2 ozs or so (our attempts to wake him are fruitless). This leads to him also waking 30 minutes or an hour later still hungry and wanting to eat again. At other times, he seems like he’s ravished but only a few sips into the feed, he’s squirming and crying and turning away from the bottle and refuses to take more. We broke out the mylecon thinking it could possibly just be gas but the jury is still out as to its effectiveness. We’ve only used it a few times now and I’m not quite sold on it yet. Needless to say, the entire process can be quite frustrating and overwhelming. As I’ve discussed in recent posts, being a typical mother, I worry constantly about their nutrition and whether or not they’re eating enough. It’s not of terrible concern for Logan since he’s in the 75th percentile for his weight (for their corrected age of 3 months old) but Landon is only in the 25th percentile and is almost 3 pounds lighter than his big brother. I don’t even like to think about the possibility of Landon needing his NG tube put back in but if things continue at this rate, it’s certainly something we will need to consider as it just breaks my heart to see him barely eat anything and then fall asleep, or cry himself to sleep, at each one of his feeds.

Another Diagnosis. We have recently begun trying to feed them organic baby food atleast once a day rather than the rice cereal for which neither one of them particularly cared. Two weeks ago I gave them carrots and Landon did great with it – I have him close to eating an entire jar all by himself! We are taking things a bit slower with Logan as he does still doesn’t seem to be ready for the solid foods. He pushes the food out of his mouth with his tongue rather than swallowing it and gets extremely irritated after only a few spoonfuls. I don’t think he likes having to wait every few seconds for another spoonful of food and I don’t want to push him if he’s just not ready. Add to that the fact that Logan was diagnosed with laryngomalacia and it creates a whole host of problems him when trying to eat solid food. Laryngomalacia is a condition in which the larynx is floppy and soft and often obstructs the breathing passage during inspiration and can often lead to problems eating solids. We started organic green beans last week and I have begun mixing spoonfuls of the baby food into his bottle since he usually won’t tolerate being spoon fed (though he does tolerate the green beans more than the carrots). It’s not the most visually appealing sight to see chunks of green beans in his formula but he doesn’t seem to notice or care! We know he’s getting the calories he needs since he’s so chubby but it’s important for his brain growth and development to ensure he’s receiving adequate nutrition (that he just can’t get from eating only formula). Landon’s the opposite of his big brother – he’s not crazy about the green beans, likes the carrots. A son after my own heart! This week we started them on sweet peas and thus far, there’s no good news to report – I think they both hate them as well! Will it ever get easier???

Growth. As of the boys’ last pediatrician appointment two weeks ago, Logan was up to 13 pounds, 6 ozs. and Landon is still lagging behind (and losing ground on) his brother, only coming it at 10 pounds, 13 ozs. (Hence you can understand my concern about his feeding issues). Their pediatrician is not concerned about Landon yet because although he’s smaller than Logan, he continues to grow on a healthy curve and his head size and length are all relatively proportional to his weight.

Developmental progress. Logan’s neurologist informed us these first few months of life are the age of “peak plasticity” for a baby’s brain and it is therefore vital that when the boys are awake they are being stimulated and engaged as much as possible and this is something at which we work very hard as a family. At birth, a newborn baby’s brain has billions of brain cells (called neurons), but they are unable to communicate with each other very well. During the first few years of life, neurons must learn to talk to each other by forming the vital connections--the neural "pathways to success"--that provide the foundation for language, vision, hearing, learning, feeling, and thinking. For Logan in particular, this is extremely important as his brain bleed and the subsequent cyst that formed in his white matter as a result have interrupted his brain’s ability to create many of these connections so the hope is that it will therefore compensate for this by rewiring itself and finding new ways to form other connections. The more connections that are made, the greater the growth. These connections expand to form a network every time Logan or Landon has a thought – and this happens whenever one of their senses is stimulated. But only those connections that are repeatedly reinforced will remain and those that are not used are eliminated. We are therefore constantly talking, singing and reading to, playing with, holding and touching the boys in order to provide these important sensory activities that are so beneficial to their brain development.

I’m elated to report that both of them have made tremendous strides in their developmental progress over the last few weeks. Landon has found his voice and his social smile and wow, does he just love to use both of them! It just melts my heart every time he smiles or coos at me…he is so beautiful and his whole face just lights up, especially his big blue eyes (no idea where the blue eyes came from!). Sometimes I’m so overcome with emotion, I feel like I can barely breathe. I laugh and smile so big that often times I find myself in tears out of sheer happiness (or exhaustion perhaps?).

The tummy time has really been helping strengthen his neck, shoulders and upper back muscles and he’s now able to support his weight on his forearms and hold his head up while lying on his belly (though only for a few seconds at a time). He can also grab onto and hold toys when we place them near his hands and recently he has begun “holding” onto this big soft ball with which we play. It’s quite a sight and sometimes he gets really excited and it almost looks like he’s trying to throw it – it never ceases to make me laugh!!

Logan is kicking and moving his arms and legs much more now and has also improved greatly with his head control when sitting upright. However, he struggles greatly with tummy time and most days does not tolerate it at all. He usually just lays there with his face buried in the mat until he’s screaming for me to pick him up. On a positive note, he is mastering holding his head steady while sitting on my shoulder or in my lap, which is extremely encouraging. He has also found his voice and his little coos are so heartwarming to hear. He socially smiles occasionally (but not as much as I’d like as he has the MOST beautiful smile I’ve ever seen!) but we have been working with him a lot on that and it seems like with every day that passes, he smiles just a little bit more. I’ve found that he is his happiest in the mornings before his first bottle of the day. I usually change him and bring him into our bedroom to hang out in bed for a little bit before feeding him and he is always such a pleasure - smiling (though usually at the lights on the ceiling, not at me!) and cooing and seemingly trying to interact with me and his environment. It’s much more difficult with him than with Landon though as he is very easily over-stimulated and highly irritable so if I try to talk to or play with him too much, he grunts and cries and basically just shuts down. I have no doubt he will eventually get there, he just needs a little more time. No one is going to rush him, my little man does things according to his own schedule and that’s just fine by me.

They continue to receive early intervention services once a week and are doing wonderful with it. Their physical therapist is currently working on head control, tracking objects (which they are both doing now) and teaching them to reach for and hold toys. She is great about giving us exercises and things we can do at home with them the other 6 days of the week when she’s not there, which is of great help as we play the most vital role in aiding their physical and mental development at this age.

Lost one specialist, gained another. We received good news last week from the urologist as Landon received a clean bill of health and is declared kidney-problem free!! No more urology visits, what great news for us! The weekly doctor’s appointments have been so incredibly difficult for everyone, including the boys. I feel as though I’m away from my job more than I’m in the office these days, the constant trips back and forth to CHOP are exhausting (not to mention expensive between gas, tolls and parking) and it throws off any semblance of a schedule we have the boys on that day. So the bad news is that the boys will now have to see a cardiologist for a routine follow up to ensure they have no cardiac issues. Hopefully, this will be a “one-and-done” appointment for both of them.

Recent CHOP appointments. Logan had his first neurology follow up appointment this past week, which I’ve been looking forward to for a few weeks now. Overall, I thought it went quite well. She did confirm that he will be diagnosed with Cerebral Palsy since he already has a lot of the indicators (nothing we didn’t already know) but to what extent, we won’t know for quite some time. He has high tone in his extremities (stiffness) and low tone throughout his trunk and neck and maintains some of his primitive reflexes that should have disappeared by now. However, she did say that she was quite pleased with how he was looking and behaving. She felt his head control was much better than she expected it to be and he’s kicking and waving his arms and legs very well. He also tracks objects fairly well, which is encouraging. All else aside, I know our Logan will be just fine because he has family and friends who love him dearly and will dote on him for the rest of his life and I firmly believe love is the strongest healing power there is. That little boy has surprised us, the nurses and the doctors since the minute he was born and I firmly believe he still has a few more surprises up his sleeve.

Landon visited the nephrologist as well last week. His blood pressure remains the same, not alarmingly high anymore but not quite as low as it should be so the doctor decided he will remain on the amlodipine for the next few months until he “outgrows this”. He was slightly concerned when he received a higher blood pressure reading in his arm than in his legs, as he advised this can sometimes indicate narrowing of the aorta but he didn’t seem overly concerned because he was having trouble with the cuff and attributed it to that. He was also reassured at the news they will both be seeing the cardiologist next month and said if there’s any problems, she will know immediately. I wish I could file it away under “unwarranted concern” but unfortunately I know I will instead stow it forefront in my mind to race through my head with all of my other anxieties and fears for the next few weeks until we can visit the cardiologist.

First outing. Now that RSV season is at an end, Steve and I decided to finally take Landon and Logan out in public two weekends ago. It was a beautiful Sunday afternoon and I just really wanted the boys to get out and feel the fresh air on their faces and see some new sights other than our family room or their nursery so I suggested we take them on a walk at a local park that has a great path that winds through wooded areas and runs along the water. After the walk, we laid out a blanket and just spent some time reading and talking while the boys slept. It was such a wonderful, relaxing day and the boys really seemed to enjoy being out of the stuffy house. We finally felt like a “normal” family taking our children for a walk and enjoying the weather with a day at the park (ok, except that unlike most parents who pack diaper bags under their kids’ strollers, we had Logan’s oxygen tank but why nitpick over small details, right?)
Sleeping. A few weeks ago the boys’ made the all too important transition from sleeping in our bedroom to sleeping in their own cribs in the nursery. It was a hard step to take but has definitely made things just a bit easier for us in terms of catching up on some much needed sleep. Logan has been sleeping through the night for quite a while now and Landon is almost there as well. We typically put Logan to bed around 9:00 pm and he wakes up around 7:30 am and gets his first bottle at 8:00 am. Landon has had a little more trouble sleeping through the night so he doesn’t get his last bottle until close to 10:00 pm and depending on how much food we can actually get into him (prior to him falling asleep or screaming), he either awakes at 4:30 on the dot or he stretches it out until 6:30-7:00. All in all, we have it pretty lucky. I imagine some people have 12 week olds who aren’t even close to sleeping through the night and we have two of them (almost!).

Now that the boys are nearly 3 months old (adjusted age), there are obvious developmental milestones they are both “supposed” to be meeting but I’ve decided not to overanalyze and concern myself with things of that nature but to instead cherish every minute and be proud of every accomplishment, regardless of when they attain it. After all, neither of them were even “supposed” to have survived and be with home with us today. They are miracles in their own regard, every single thing they do in their lives will be a miracle to me.

Thursday, March 19, 2009

Dodged a bullet

Well, as is quite evident, it has become increasingly difficult to find time to update the blog now that the boys are getting older and are spending much more time awake so I apologize to those that follow it and have been awaiting the latest news!

We've had some big developments in the past few days as our little sweetpea Logan gave us quite a scare. It began on Tuesday morning when I noticed that the night before Logan just didn't sleep as well as he normally does - he was tossing and turning and grunting a lot. I didn't think too much of it, just chalked it up to his cannula bothering him because it had been coming out of his nose alot, but I made a mental note of it anyway. The remainder of the day, however, gave me pause as he continued to seem just not quite "himself." The most alarming symptom was that his fontanel appeared to have "filled in" quite and bit and was no longer soft but tense and bulging, which indicates that his brain is being put under pressure by the build up of fluid. Coincidentally enough, he had CAT scan and neurosurgery follow up appointments scheduled for the next day at CHOP. His CAT scan was intended to be just a baseline to monitor his shunt but instead it revealed to us the cause of Logan's symptoms - a subdural hematoma on the left side of his brain caused by overdrainage of the shunt. We were informed that he would be admitted to the hospital and would in all likelihood need surgery today to drain the blood and then based on how is brain looked, he might need a shunt revision to address the possible malfunction. It was a lot to swallow in one day and flashbacks to our prior days at CHOP and the Pennsy NICU quickly flooded my head. So after spending 14 hours at the hospital yesterday we awoke at 530 this morning to head back and watch our sweet boy endure a 2nd brain surgery of his short life. What an indescribable relief when an hour or two after our arrival, the doctor came into Logan's room and informed us that they had opted not to move forward with the surgery. Their reasoning was that his fontanelles had softened overnight and were not bulging, he wasn't symptomatic anymore and the hematoma was small enough that if it was no longer putting his brain under pressure then they would rather not risk the surgery. He will get a follow up CAT scan in one week and then a subsequent one a month later in order to monitor the hematoma and ensure it is not growing larger and/or putting pressure on the brain, thus possibly causing further brain damage (than what he already endured from the grade III/IV brain bleeds). Yes, there is a good possibility that we will face the repercussions from this problem again in the near future (since they don't typically resolve on their own in infants) but for my own sanity, I can only be thankful that today brought us good news and Logan is home with us, back to his normal self and will sleep in his own warm bed right next to me tonight. :)

That news aside, time is certainly passing us by quickly and they are growing like weeds. As of their last pediatrician appointment 3 weeks ago, Logan was 10 lbs., 10 ozs. and Landon was 9 lbs. 8 ozs. They weighed Logan in the hospital yesterday and he was up to 12 lbs., 5 ozs. already!! Hopefully Landon is only a pound or so behind him.
The biggest and best news I have to offer is that RSV season has almost come to end and it appears that we have made it through our first one without either of the boys getting sick, what a tremendous relief! RSV is short for Respiratory Syncytial Virus and is a viral disease of the lungs and the primary cause of respiratory illness in infants and young children (and the primary cause of rehospitalization within the 1st year of life for micro preemies like the boys). Virtually all children are exposed to RSV within the first 2 years of their lives and babies born before 36 weeks are at an elevated risk of contracting severe RSV. For otherwise healthy infants it amounts to not much more than a simple cold but it has much more dire consequences for premature babies with compromised respiratory systems, including death. For this reason, we have not been able to take the boys out of the house except for doctor's appointments and even then we have to either wait in the car until they can be admitted into an isolated room (rather than sitting in a waiting room full of sick kids) or we have to seclude ourselves to the corner of the waiting room away from everyone else. We have not permitted any guests at the house except for immediate family so none of our friends or extended family have been able to meet them and that has been extremely difficult for me. As an especially proud first time mother, of course I just want to bring them everywhere with me and show them off to everyone I know but alas, this just isn't a feasible option for us. RSV season is officially over in mid-April so I am certainly looking forward to being able to slowly introduce them to the rest of our family, friends and the outside world. It has been a long and taxing Winter for our family and I welcome the warm weather in hopes that it will help to lift all of our spirits, including the boys' as they don't get outside too much except when we bring them out to the porch and sit in the rockers with them.

Landon and Logan continue to have 1-2 doctor's appointments a week although the next month or so is looking much better now that the need for follow up appointments has become less frequent. Whereas immediately following discharge, they were seeing a few different doctors every 2 weeks or so they are now only requiring monthly or bi-monthly follow-ups. We received good news at Landon's last nephrology appointment in that his renal scan looked great and his blood pressure has normalized. Therefore, we have a follow up in a month and if his BP remains stable, the doctor is hoping to be able to discontinue the need for his daily medication amlodipine).

Logan remains on supplemental oxygen (1/8L flow) but is making good strides toward being weaned off it. An 1/8L flow is about as minimal a flow as they doctors will prescribe (his regulator is set to go down to 1/32 but the docs say when the settings get this low the difference is inconsequential. His sats usually sit anywhere from 97-100 while on the oxygen but the few times we've taken his cannula out of his nose his sats typically drop and tend to yo-yo between the low 90's and high 80's. He is growing at a considerable rate though, as are his lungs, and eventually the growth of new healthy tissue will eradicate the lung disease he incurred as a result of his prematurity and being on the vent for the first 8 weeks of his life. Therefore, we are hoping and expecting that he should only need the oxygen for another month or so.

Now that the boys' chronological age is 23+ weeks (almost 6 mos.) we have started them both on rice cereal (only once a day for now), what an adventure that has been!! It is quite a task trying to feed rice cereal to babies who really only behave like 8 week olds (that is their adjusted age). Needless to say it usually requires both Steve and I as they cannot sit up on their own (or even sit supported in a bumbo since their head control is still lacking) and they both seem quite confused to receive a spoon instead of the nipple to which they have become accustomed! They really struggle to understand the concept and it is incredibly difficult with Logan as he is a fierce eater and just doesn't have the patience to sit and wait for the spoon and when it arrives he only finds minimal sustinence for his liking, whereas with his bottle he can gulp down as much as he wants as quickly as he wants (before mommy or daddy have to pull out the bottle in order to pace him). We will keep them on the rice cereal for another few weeks and then slowly introduce them to regular baby food, beginning with veggies. I must admit, I'm extremely excited for that as I'm quite certain they will probably never acquire a liking to the taste of the rice cereal (it's quite bland)!!

They are both receiving physical therapy once a week through the State of NJ Early Intervention Svcs. and although they've only had a few sessions, I feel that it has already been of great benefit to them. The therapist has thus far been focusing primarily on improving their head control and encouraging them to reach out and hold toys when placed in front of them. Logan, being the bigger and stronger of the two, has much better head control and can lift his head somewhat during tummy time as well but Landon makes attempts to reach and hold toys whereas Logan does not yet (he tends to keep his fists clenched tightly closed). Each of them possess their own strengths and weaknesses and I find that so endearing.

I have so much more to say but am absolutely spent from the events of the last 48 hours so unfortunately I'll have to wait until my next post (which hopefully won't be in a month's time like this one was)!

Tuesday, February 24, 2009

Chugging along....

We’ve had quite a few doctor’s appointments in the last few weeks which netted us some good news and some bad. First, the positive news: both Landon and Logan’s ROP has regressed and is well on its way to being gone. Of course there is a distinct possibility they will have complications with their eyes later in life (ie-need for glasses) and Logan’s peripheral vision is compromised (due to the laser surgery) but his central vision is intact and they are no longer at risk for blindness (a collective sigh of relief resounds through the room).

Landon also had a follow up appointment with the nephrologist and his blood pressure has stabilized since he was started on medication so fortunately they did not need to perform any further tests on him. He will continue to be monitored by both the nephrologist and urologist for the foreseeable future but we are hoping it won't progress into anything more serious.

Of course with the positive comes some negative. We visited the audiologist at CHOP and as we suspected (and dreaded), Landon was diagnosed with severe hearing loss in his right ear. In other words, he is not completely deaf in that ear but close to it. He will therefore be at an even greater risk for speech/language and development problems but we have already started working with the Early Intervention program so I am confident he will get the best help available. He will join Logan in a follow up appointment at CHOP ENT (Ear, Nose & Throat) to determine the cause, though the audiologist said she believes it is structural, not a result of the meningitis or brain bleed he endured in the NICU. (Logan is going to ENT for his weak left vocal cord from being re-intubated for the shunt surgery). I suppose all I can do at this point is to look for the silver lining and be thankful that he can hear perfectly with his left ear, right? Or perhaps that is just the PC thing to say instead of admitting that deep down inside I’m absolutely devastated once again. We have known for quite some time that Logan will have many challenges he will undertake in his lifetime but I have been secretly hoping and praying that maybe Landon would escape this nightmare without any serious complications that would plague him for the remainder of his life. That he might be spared of that burden and my heart may be just a little bit lighter and free of some of the immense guilt and grief that consume it. Alas, no such luck.

On the home front, things are still going well. Logan continues to be our monster eater – at only 5 weeks of age (adjusted age obviously) he’s already eating 7 ozs. every 4 hours or so!! He hasn’t been weighed lately because we haven’t been to the pediatrician in a few weeks but they both have an appt. next week and I’m extremely eager to find out how much he weighs. I will be shocked if he’s not atleast 9 pounds, he’s getting so heavy that my arms ache sometimes from holding him after only a few minutes! Landon is still struggling with his eating as he tires out very quickly and often can’t finish his 4 ozs. His sucking reflex is much weaker than Logan’s and it takes him much longer to take down a smaller volume of formula. Add that to the fact that he has reflux and often spits up and it leaves me constantly worrying that he’s not being properly nourished and not gaining weight at a healthy rate. Or maybe he’s doing well for a 5 week old and I’m simply comparing him to Logan who is eating much more than a typical baby his age would be??

Just to clarify the aforementioned “adjusted age” reference, due to the fact that the boys were born 15 weeks early, the question “how old are they?” will never be a simple one for us. Their chronological age is 20 weeks (born 10/5/08) but their adjusted age (using 1/19/09 due date) is only 5 weeks given that they weren’t even supposed to be born until that date. The latter age is what we will use for purposes of evaluating developmental progress and milestones.

They both sleep relatively well, although of course we will be much happier when they start to sleep through the night! Right now, they usually get a 10-11:00 bottle, one around 2 in the morning and another at 6. Often times though, one or both of them will decide to stay awake for one reason or another in between bottles and that is when the nights (and ensuing days) are rough. Bath time is extremely stressful as Logan absolutely hates it, as he does most things that involve any sort of handling. It scares me to take his oxygen off for a prolonged period of time, particularly when he is wailing so hard he is turning a shade of bright red and purple and is fighting to catch his breath. It makes it difficult to clean him as thoroughly as I’d like and with the attention he needs because I find myself rushing through it out of sheer terror and heartache. Landon, on the other hand, has no problem with his bath and usually just sits there and enjoys the warm water that Daddy makes sure to splash on his belly to keep him warm.
Well, it’s already 10:00 and the little men are due to eat soon so I have to run off. I’m hoping my next post will bring only good news though, as they don’t have quite as many doctor’s appointments in the next week or two. Please continue to pray for Landon and Logan and their well-being.