Smiling Son

I had one sweet smiling son this morning and nothing makes me happier.

I find Sunday mornings a rare time of reflection and attempts at laying plans for the week ahead. Beyond the fact that it is the intended day of prayer and rest, Sundays are a good day for family time. We had some of everything this weekend but the one big change was having night nursing for the first time. This should equal much needed rest but I did fight the urge to peek in on him several times in the night as I heard the alarms and heard the nurse responding. The girls went to Jason's mom's house last night and so we got a night out at a social function. It was fun and hopefully we can make those kind of plans more often over time.

We did have one little issue when the night nurse arrived for the first time at 11 pm thursday evening. She had a rank smell of smoke and I got an uneasy feeling about how I would approach the issue since we had been clear with the agency that Sam can not be around smoke of any kind. It is not my place to judge another person's decision whether to smoke or not in their own life.. although personally I have never understood the appeal, but my main concern was for Samuel's health. He had a therapist not long ago who was a smoker and the cloud that followed her was definitely impacting his condition. I would watch him writhe and moan the minute she took him into her arms yet every other therapist instantly warms to him and brings smiles and cooing. While close to her, he started breathing hard and retracting.. it was his nurse at the time who suggested we terminate the relationship and get a new therapist. It was the only way to go if we hoped to avoid Sam expending unnecessary energy and risking metabolic crash symptoms.

To make matters worse, this nurse is 6 months pregnant. So my first thought was that surely she was not a smoker, but perhaps lived with one. She was incredibly kind with Sam and proceeded to competently handle all his needs that night. I actually really like her but could not get past worries about the air quality in his vicinty. I decided to approach her the next day and actually it went ok. Right away she confessed to having smoked right before arriving at our home and then the more strange answer, was that it was her last cigarette. She had decided to quit. Jason was not convinced but I try to give people the benefit of the doubt and decided to discuss a way to adjust the situation for that next night's shift. She offered to shower well and wash clothes and avoid all smoke. Then when she arrived I noticed the smell was not as strong, although not entirely gone. One of my fears is that she decide to take a smoking break while I would be gone or something and then Sam is not being properly monitered.

I think we have decided it is just too risky and we need to stick to our decision about avoiding environments and situations that would overtax his delicate system. It hurts to think there are people being so careless and haphazard with the health of their unborn child. We made such an effort to provide the safest and most advantagous environment for our son to grow and yet he had to experience such trauma and distress. Why would anyone want to do anything that might harm their baby? If only they knew the anguish and pain of watching your baby struggle. There is nothing I could compare it with to tell a first time pregnant mom other than to say this is the closest they will ever be to God and to tread lightly in his shadow. In my opinion the ability for a woman to carry her developing child and give birth is the most spiritual and miraculous gift we are blessed with in life.I will pray she makes the right choices for Baby Landon.

As for Sammy's health this weekend, he did ok and got lots and lots of sleep. He did have some brady episodes on Thursday and Friday night and one long one this evening but Saturday was fairly uneventful. Friday night his oxygen saturations were not great with many dips into the lower 80s although most quickly corrected and he hovered around 93. The nurse was very nervous leaving here that morning but by yesterday evening he was 96 and on up to 100 so whatever was bothering him seemed to be lifting. Today was good but tonight he had a longer low heart rate brady and his breathing is a little noisier so without having the nurse tonight, I think it will mean sleeping with one eye open. ;) Sam has been having some formed BMs which is quite the rare and positive news! Silly that I am like a BM cheerleader now..wow the paths our lives lead us! I am guessing the MCT oil is the culprit but it actually is supposed to do the opposite. Sam never fits what you expect..no new news there!

One last new change for him lately has been keeping his mouth in a more closed position. About one week after his birth, right after his ALTE (acute life threatening event) in the NICU actually.. Sammy started an odd behavior and (dare I suggest)a telling symptom. His toungue would flash in and out of his mouth in what was called a fasisculation pattern. We did not learn until much later that this behavior could be a symptom of some oromotor dysfunction and some even suggested it could have been seizure activity. It later shifted from the in and out pattern to sometimes just being out of his mouth for long periods of time. It was also thought that he might have been trying to hold open the airway by protruding the tongue.

I am quite pleased to see him keeping it more closed now. He has such a sweet smile and I am seeing it more and more lately..he continues to make babbling sounds and we are doing some sign language to encourage his comunication. I pray he finds his voice in time.

I have prayers on my mind about the larger issues facing our nation and the policy makers leading our country. I hope God gives them quidance to find the right way to approach each challenge.