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.