Where to start...? Our little Trev isn't so little anymore! He's doing great, thank goodness! In April after being seen almost weekly by Dr. Yaish since his last transfusion the end of Jan. his little body FINALLY developed enough antibodies to overcome the parvovirus. Why it took so long??? I'm not sure and have never gotten a real definite answer. At a Neonatal Follow-Up appt. I had a dr. tell me upon hearing Trevs story "I have been practicing over 30 yrs. and I do not get blown away often, Trevs story blows me away!" I have yet to see a dr. who upon hearing his story has anything to compare it to and/or tells me "I know in textbooks parvovirus (fifths disease) can potentially cause problems for a fetus but I have never actually SEEN it". I almost can't help but laugh when "seasoned" doctors lean forward in there chair with a puzzled expression and say "now tell me that again", after I explain his reasons for being born early and journey with parvovirus. That FINALLY seems to be cleared up, I will know for sure on June 16th when we visit Dr. Yaish. We did have a scare with his head and the rapid growth. Turns out he has "Benign Extra Axial Fluid of Infancy". Not necessarily common but not uncommon either especially among preemie boys, key word being benign however. Basically his "drainage system" in his head isn't real efficient and fluid gets "backed up" since it WILL eventually drain and it is in the outermost layer of the head it typically causes no problems. Just a big head (: Between his pediatrician and the neurologist at Neonatal Follow-up his little (ok not so little) head has been checked and rechecked enough that now it's just a matter of as he grows the fluid will drain more efficiently and there is nothing to worry about, phew!! Neonatal Follow-up is a program for preemies at a facility by Primary Childrens that monitors preemies starting at about 3-4 months until they are 2-5 years old depending on their situation. An AMAZING place that although isn't somewhere you'd wish to go but if you have to sure is incredible. All sorts of doctors ranging from nutritionists, physical therapists, neurologists, optometrists, "preemie pediatricians", etc... you name it they check your baby head to toe, inside and out. They then have you come back every few months to whatever dr. and/or therapist your baby may need to continue to need monitoring from. We have been twice now. Initially Trevs head was a concern but was cleared this last time. He has some muscle tightness that was noted by physical therapy and I was shown some exercises to help "stretch" things out. The womb serves as an incredible "exercise apparatus" especially in the third trimester and when a baby misses out on that and spends that time instead wrapped up in a blanket in an isollete muscle tone is a concern for preemies. Trevs is minimal and this last time has already "graduated" from anymore specific physical therapy! Not a single doctor considers him his age by his September actual "day of birth" birthday. He is considered the age he would have been had he been born when he was supposed to which is December. So for his "adjusted age" (in his case December) as it is called he is right on where he should be!! Yea!! The only thing noted this last PT (physical therapy) time was he seems to show strong signs of being left handed! Like Father like Son! And Uncle Kasey! There is a good chance he will need glasses but if he comes out of all this only needed glasses we are VERY lucky! We go back in September but will hopefully "graduate" all around from neonatal care by the time he is 2ish. They will check his speech as that comes (often times a baby who was on a ventilator as long as he was can have speech problems) and continue to monitor his development all around. As I sit in the Neonatal Follow-up waiting room and look around at all the different preemie kids I am overcome with gratitude and thanks at how well my little Trev turned out. Already. He could've and technically should have so many MORE problems stemming from being born so early. As grateful as I am for him and the things I've learned, and that is BEYOND MEASURE, and although he is doing SO well now I still get choked up just thinking about the past year. I think it's possible I suffer a bit (a lot bit depending on the day) from post traumatic stress syndrome/disorder. Something will trigger a memory from when Trev was really little and sick and I will lose it as though he still is. I am doing much better especially recently, but to be honest for awhile there I questioned my sanity after all this. I think while you go through an extremely stressful situation and don't have a choice a lot of feelings are actually suppressed and once it is "done" that's when the REAL emotions finally surface. I am at a point though where I am actually very thankful and feel even lucky (blessed might be a better word) for what happened this past year and wouldn't change it even if I could. I wouldn't redo it for anything (ANYTHING!) but I wouldn't trade it for anything either.
Luckily these images are becoming more and more distant. I still remember sitting on the side of his isollet and thinking I would just stare at him till he grew up and at the time thinking it would never happen, but it is! Funny how we almost got used to seeing a tiny 2-3 pound baby and although a full term newborn will always seem huge to us now it is very relieving that I have started to forget how tiny he was...There isn't a night that goes by that I don't look at him sleeping peacefully in his crib with no wires, beeps or tubes and just the fact that he is here, without getting a tear in my eye. I don't wanna suggest I love my baby more than the next mom but when your baby starts out his life fighting for it and you almost don't get to have them theres an appreciation and 'extra' feeling for your baby that is indescribable!
