Wednesday, October 27, 2010
Wow! Can u believe it! A whole year??! Awhile back my momma wrote in my blog and titled it 'The Mommas Perspective', and it was my daddy who started the whole thing, so I ;) decided it'd only be fair if I got to put some stuff in here (and probably the final...we're pretty boring now days YAHOOO!!) from MY, 'Trev Spencer Webbs Perspective' (corney, yes my mom knows but thought it'd be cute anyway)...here I go. Ahh what do you know my mom immediatly burst into tears at just the thought of trying to sum up the last year of my life. I changed my families whole life. Changed it in ways that can't even be put into words. Certainly not that could be summed up in any ol' blog...But I'm going to try...I should not be here, wait I absolutely should! What I mean is, the way my life played out in the beginning (refer back to 'the mommas perspective' and some of my daddys entries way back) is unreal. The series of events that lead to me being born, the doctors and nurses who saw and treated me and/or my mom, the intuition, the prayers, the fasts, etc. etc. had they been any different in ANY way, whatsoever, I would not be here. To go into great detail would require writting a book, not a huge book perhaps, but a book nonetheless, something my mom is considering though... Most importantly the things I have taught people, especially my momma, are priceless beyond words. I hope I don't sound too conceded (: ...it's just that If you knew the things I knew (my mom doesn't even know entirely, she just has a strong belief I know things I can never explain in this life and I'll forget as I learn to talk) you'd understand why I went through what I did. What my mom does understand is things happened to my family, both immediate and extended that would not have happened had I not been born the way I was. Amazing things! Never did my mom think she'd be grateful for the past year and although (she says this all the time) she would not repeat the last year of her life (2 years actually) she would not change it for ANYTHING either! I should back up and let you all know I am as heathly as can be! I was supposed to see Dr. Yaish (my Primary Childrens dr. who treated my blood issues) until I was at least 2 and up to 4-5...well last time I went, was just after my 1st birthday and guess what he said??? "I don't need to see this little boy anymore"! Of course Momma cried and hugged Dr. Yaish! She was torn between shock, happiness, saddness, guilt but mostly gratitude beyond words! And then there's the neonatal follow up program for preemies, I go to every few months. Well when I went in May there was some concern with my eyes....But when I went in this last time (end of Sept.) my eyes were perfect! My hearing? Perfect! I even 'tested' ahead of schedule for my adjusted age!! A psychiatric dr. (there are ALL sorts of specialty Drs. at neonatal follow up check ups, it's pretty amazing, who monitor preemies head to toe, literally) anyway he, as well as some of the other drs I saw said, "this little boy isn't going to need neonatal follow up much longer!" They don't even want to see me back until next May!! Unbelievable considering what could have been, and especially considering what my Drs. originally thought I'd need to 'catch up' or the problems I'd have. There is still the possibility I may have asthma issues, only time can tell that, and I am pretty skinny (so were/are my brother and sister though, no cute chubby babies around the Webbs, only wiry, long, skinny babies around here:) Even my E.I. (early intervention) therapist who comes to my home once a month is going to try and 'test me out' of E.I. in January! It was orginally thought I'd need E.I. until I was at least 2 or more! Amazing, believe me, my family is soooo grateful and feel blessed beyond words! Yet one of the things I mentioned my mom experiences at times, especially when I am told I am doing so well, is guilt. The things we have seen now with some of my NICU buddies who don't fair as well as I am, if ever, cause my momma guilt. The level of empathy I taught my mom is only realized, and on a level, that is only understood if you've gone thought something similar. My momma and daddy are drawn to people now more than ever, who are going through similar experiences and want to help those people in anyway they can! Like I said they are even going to drop everything we thought we'd be doing over the next few years and go to school full time (well daddys going full time, momma needs/WANTS to take care of me and my sibs full time and school part time:) and learn how to help little guys like me!! Yep, I inspired that! My Daddy NEVER thought he's be going back to school full time, especially with a wife and three kids, and into something he'd NEVER even considered before me! Cool huh! Scary yes, my dad is excited and scared to death how he's going to do it, but things have a way of working out, and I know that firsthand(: ... I mentioned at times my mom feels guilty, well she knows she shouldn't feel guily, but it's one of those unanswerable questions, why things happen the way they do?? Actually we do know the answers a little, but as a whole, why I'm good to go already and some of my NICU buddies aren't (if ever) we don't know...and cause not only gratitude, joy etc. etc. but guilt at times...That being said I need to let everyone know who ever prayed for me, not only thank you INFINITY! But please now gear those prayers to my little friends who are either still in the NICU, ever will be in the NICU, or who come out and don't fair so well, healthwise, if ever. As hard as what I went through was, it's a walk in the park compared to some of my little NICU friends. Whenever my mom starts to forget and thinks everyday things are 'hard' or 'stressful' she thinks of me, hooked up to a bunch of machines, or all those little babies who are still there with problems FAR beyond most peoples understanding. Visiting IMCs NICU (any NICU) for months or regularly going to Primary Childrens has a way of changing your life, that isn't understandable until you do it. In some ways my mom has to remind herself not to be judgemental now of those who don't fully understand. My mom and dad were once 'one of those' parents who thought a couple vaccinations (or sleepless newborn nights) were a big deal (and they can be (: ...my momma remembers with my bro and sis:) BUT now having gone through with me what they did, it's hard not to want to punch people who complain about 'normal' newborn/pregnancy issues. Yet what my momma does instead of punch 'unrealizing' (ok ignorant) people she smiles and is soooo thankful that she, maybe not loves me more than another mother loves their baby, but definitely has a love for me in a way that isn't possible to have unless you've gone through the NICU and/or special need baby circumstance. Along with the new level of love for me, my parents have a whole new love, respect and gratitude that also cannot be measured, for medical technology and the AMAZING, INCREDIBLE, BRILLIANT, people who dedicate their lives to helping others!! And even more so than that is the love and faith my parents have, now more than EVER, for The MAN Upstairs and His Son and Spirit. Without Them there would be nothing...Ok so it's 5 AM and my momma has to get up at 7:00 to get my sissy ready for kindergarden (you should have seen my momma cry about that! She was excited for her baby girl but Momma bawled like one too when Sissy got on that bus! Luckily Sis LOVES school and we couldn't be more proud of her!) Momma also has to take Drake to Little Gym tomorrow (he has pre-school on Tue. and Thur. it's awesome, although a tear jerker for momma at first too, but awesome cause just me and mama get to hang out for awhile those couple days a week:) PLUS Momma has to go to Sisters school tomorrow and volunteer, and most of all I AM A HANDFUL NOW! So a bit of sleep is probably a good idea first...I don't hold still for a second! I am into EVERYTHING!! Me and my brother and sister keep my Momma hopping all day! And while only a couple hours of sleep is going to be a bit rough for my Momma tomorrow, her babies (and that amazing daddy of ours) she wouldn't trade for ANYTHING!!!!!
Our family will be indebeted FOREVER AND EVER to the MANY, MANY, MANY, nurses, dortors, RTs. PTs, etc...who helped me and all my other NICU buddies to this day! Such an inspiration that both my momma and daddy are going back to school so they can be one of those people who help little guys like me!! These couple pics have a cool story. One, is a picture of Stacey (one of the many FAV nurses) on the day I was going home, she gave me some presents one of which was some jammies, a size 12 month! Whao! That's never going to fit someone who starts out their life at 2 pounds!!....Well guess what thanks to those many drs. nurses etc...THEY FIT!!!!! And here they are on me, on my 1st B-Day!!! Thanks a zillion times over doesn't even come close to our gratitude for medical personnel and technology!!
I was born September 4th, my Mommas birthday is Sept. 2nd. Of course not much of a birthday that year for either of us. I was born unexpectedly 14 weeks early and fighting for my life on the 4th and it was on the 2nd that my momma found our just how sick I was...So my momma swore as she lay in her hospital bed and if I made it, no matter what, one year later on my first birthday and her 30th!! we would do something BIG to celebrate! Guess what?? I made it!! Disneyland?? Nah I'd still be too little..Sea World/San Diego! Yay! Reese, Drake and I could all see the ocean for the first time and even I'd enjoy seeing the animals at Sea World! It meant a lot to us all and we talked about it all year leading up to it! Not so much for a 'birthday' present but more of a celebration we had made it through a difficult year as a family!! Yahooo!!! Yes, at one point on about day 3, after a fun but LOOONG day at Sea World, my daddy, surrounded by hyper, crying, laughing, sweaty, stroller(S), hungry, tired, excited, confused, done, children and baby (and wife) he swore (literally) and said something along the lines, "remind me again why did we take 3 kids under 5 to California???" Luckily all he had to do was look at me, his little miracle man and think back at what could have been and he remembered and wouldn't have traded it for ANYTHING (: And yes my Momma cried...standing on the beach with me, healthy, happy and one year old me. Cried and cried. Tears mixed with all sorts of emotions and on all sorts of levels but mostly cried of relief, gratitude and of a love she never knew was possible for someone!
I wasn't too sure about this whole birthday thing (keep in mind developmentally I was only 9 months old...) I didn't understand why everyone was looking at me and I really didn't care for the taste of cake. And everyone sang to me and boy did my Momma cry! When that 'happy birthday' song started whew, tears just poured down her face for some reason ;) I think my Sissy and Bro liked my presents more than me, but I sure liked the wrapping paper!
Tuesday, October 26, 2010
I just LOVE my Bro and Sissy! I try and follow them everywhere they go I even get really frusterated when I can't keep up! They are so good to me. From what I understand Reese is my sister, but she sure is like my mom..(: she holds me, feeds me and tells me NO! when I play with the sockets on the wall (or the toilet, or the drawers...) and talks to me just like my Momma does! She even gets in my crib with me in the mornings and reads me books! She loves to kiss me all the time and always tells me "big boy, yay, big boy..eww I love you" (: Drake, I think he is just the greatest, well most the time..sometimes he gets a little rough. He likes to wrestle me (sometimes I like it and I'm starting to wrestle back:) He tries to hold me, but I must be a little too heavy for him cause he usually drops me (luckily he doesn't get me too far off the ground to begin with, once he had me on the bed, but Momma didn't like that and told him not to do that even though he was trying to help me). I love watching Baby Einstein videos with him! I can tell he's going to be my good buddy. Once when Momma was telling the story of how I was born and all the stuff I went through to Reese, Drake got upset and told Momma, "don't tell me that, momma, I don't like Trevy doing those things, he's ok, don't tell me anymore those things!" My big protective Bro didn't like hearing about me getting poked and being sick in a hospital for a long time! Both of my siblings would (not so much anymore) get on edge whenever Momma and I had to go to the doctor, they liked to be reassured over and over I was coming back and I was ok.
My cake!! My Momma and I used to discuss while I was still teeny tiny and in my isollete how we should decorate my nursury, we decided monkeys!! We decided that right soon after I was born but my Momma didn't actually decorate my nursery until right before she brought me home almost 3 months later!...It was too hard on her to decorate a room that would be empty for so long, but it sure was exciting when I got home and sure enough, cute little jungle animals (esp. monkeys:) decorated my room just like she promised me! So of course, I had to have a monkey on my first cake!
Monday, May 31, 2010
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!
I always noticed right from the start Trevs tongue was always partially out of his mouth. He even had to wear a little chin strap to keep his mouth closed in the NICU so a CPAP (breathing apparatus) would work more efficiently! But it wasn't until recently he started sticking his tongue out all the way and NO WONDER IT'S ALWAYS PARTIALLY OUT! That thing is so LONG (:
Sunday, May 30, 2010
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.
Sunday, January 31, 2010
Where to start? It's been awhile since we've updated Trevs blog partly due to the time it takes taking care of THREE babies now (ok one baby and a 3 and 4 year old who aren't technically babies anymore but they will always be MY babies as far as I'm concerned) but mainly due to (thankfully) Trev became somewhat boring(: In a good way of course. He came off his oxygen within weeks of being home and his days finally revolved around nothing more than naps, bottles, diapers and just being a 'real' baby. Trev had his 15 minutes of fame (a lifetime starting from Sept. 4th as far as we're concerned of course) front page on the Salt Lake Tribune the end of December. I got a call one day early Dec. from a news reporter who had seen our blog and wanted to do a story on him. I remember answering the phone thinking it was a joke but sure enough come to find out a friend of ours had sent our blog to the newspaper and they wanted to hear all about our little Trevs crazy journey. We had no idea until the morning of the article though it'd make front page news! It was pretty neat to say the least. So aside from becoming extremely spoiled and not ever wanting to be put down (which he deserves but literally NEVER wanting to be put down!) I had never been so thankful to resume a "normal" life of being a mom: preschool, gymnastics, naps, diapers, transmormers (Drakes beloved transformers) peanut butter sandwiches, Disney channel, laundry (laundry and laundry) etc...Things that are seemingly boring but I missed like crazy and swore I'd never take for granted again. He does have to get an RSV vaccine once a month through April. A nurse comes right to our house and gives him a shot. The last time they came Drake cried harder than Trev did, "no no don't give Trebby a shot!!" And a physical therapist from Early Intervention comes once a month too, to make sure he gets and stays up to par with his development. Those things too fortunately or unfortunately depending on how you look at it have become no big deal even normal. But whoa whoa Trev however STILL isn't done with his crazy story come to find out this last visit to the hematologist. I guess he doesn't like the monotony of naps, diapers, preschool, laundry etc... Of course Dr. Yaish (his hematologist) has continued to followed him with regular visits since being home but those visits became farther apart as it seemed they could. He had a routine check up scheduled for January 20th I wondered (that beloved mothers intuition never ignore it, never) kicked in about 5-6 days before the visit I thought, 'hmm is he looking a little pale? Maybe I ought to move up that appointment up a few days'. I almost did ignore my mothers intuition. He had no other symptoms really with being anemic and I even thought maybe I am just not used to my white headed Indians (Reese and Drake despite the white hair get dang near black in the summer) were seemingly pale too but only cause it's the dead of winter, maybe thats the case for him too?? But I did move up the appointment on the off chance he was becoming anemic again. Not so off. Much to my surprise and his hematologist nurse he was anemic again very anemic. Now Dr. Yaish had warned us that it was possible after his last transfusion in the NICU he'd possibly need one more but it wasn't real likely after getting the IVIG treatment which was done days before coming home from the NICU too. And after two months of being home with no transfusions and his levels staying normal with his past visits to Dr. Yaish everyone was pretty surprised at his levels going down at this point. Unfortunately Dr. Yaish wasn't there and won't be until mid February. I knew that going into this appointment but believe me when I found out about his needing a transfusion and once again no one being sure why I had thoughts about the look on Dr. Yaishes face when I showed up with Trev to his winter retreat in Florida. This man is by far the most knowledgeable man when it comes to blood around. Not to mention amazingly humble and comforting. For the time being though his colleagues reassured me and I knew we had no choice but to transfuse given his levels and they'd do some testing to find out why the sudden drop again. I knew why though yet still couldn't believe it; that damn parvovirus is STILL in his system. This is the point in the blog where if you haven't been following his story it's not going to make much sense. For parvovirus to still be in his system given his otherwise perfect health is unheard of. For it to have wreaked the havoc it has, the way it has in a baby is virtually unheard of. It can cause problems for a FETUS that is well known yet never to the extent it has Trev especially given the early detection (parvo in a fetus aside from being rare to contract is very treatable if detected early. It can cause death if UNDETECTED and untreated but like I said usually it is very treatable and sometimes no treatment is required at all with early detection). It's very strange to know more about something than a doctor does and/or have questions about a seemingly common virus yet doing extremely uncommon things and doctors not having anything to compare it to or be able to answer. One of Dr. Yaishes colleagues told us out right they (him and his fellow hematologists he works with at Primarys) have had many conversations about Trev and the unusualness of this normally usual virus and him. So our little brave man underwent yet another blood transfusion. His SEVENTH!! It was awful because they could not find a usable vein for over an hour! He was poked SEVEN times by four different IV specialists before a suitable vein was found in his foot. I didn't know which was worse when he hardly flinched by the first few pokes and goes into his defense mode (he is used to be poked unfortunately) of going to sleep or by the fourth poke both of us were bawling. He has gotten strong too so it took me and a nurse and the IV guy to hold him still. At first both Trev and I were being tough but holding your baby down to be poked with needles repeatedly caused the tears to literally drop off my chin like rain especially since I couldn't wipe them as my hands were occupied holding my little Trevy down. Luckily the actual blood transfusion went well and he was looking like he HAD been in Florida! You can literally see the color come back to him and then some for the first few days after a transfusion as he looks like he's been out in the sun. It was also decided that until the parvo is no longer detectible in his system he'll get an IVIG treatment every four weeks and he got one two days after the blood transfusion. Luckily a vein was found right off for this transfusion and with the help of a little benadryl (to counteract sometimes a slight rash that comes from transfusions) he slept most the time. These transfusions take anywhere from 4 to 6 hours. So thats the story for now. Luckily you'd never know by looking at him, he's very healthy otherwise. He is up to almost (probably is by now..) 11 pounds not great for an almost 5 month old baby but gestationally he is only 2 months old, and really great when you start your life at just barely over 2 pounds. If you were to see him in person you'd think he was about 3 months old and acts like a 3 month old too. They say for every month a baby is premature that is how far behind they are for the first couple years of life. So if you look at it like that he's a month ahead already!! Luckily like I said he is in an Early Intervention program for 'long term' NICU graduates and by the time he is 2-4 years old (if not long before) no one would ever know he was behind in any way shape or form! I'm not worried about that my poor children if anything have a mother with OCD issues (especially when it comes to her children) and I push my kids up and beyond their limits and notice things about them that don't even need addressing half the time(: I do worry however and feel weird about being almost used to going to Primary Childrens. Like I said he is going to undergo an IVIG therapy every 4 weeks until the virus is not in him anymore. This last one could have been his last or he may need them for years! That is where the unknown lies in this virus and him. I worry more about the side effects of these transfusions and him being poked repeatedly to find a vein than the actual transfusion itself. I worry because the CDC has heard about him and called us now and wants to do some testing on Trev due to the strange ongoing of this virus and him. The one thing I do not worry about though is the incredible lesson I have learned and continue to learn with Trev. His outcome and otherwise health despite the abnormalcy of this virus is nothing short of a miracle. Like I said in my "moms perspective" blog entry I was told that over and over by doctors and nurses, Trev is a miracle. His crazy 'entry into this world' journey although not over but especially in the NICU could have been so much worse. He had his fair share or trials being a preemie no doubt but not nearly as many as he could have or when in comparison to some of his other little 'long term' NICU buddies. And especially considering he was all but dead upon arrival. And now going to Primary Childrens on a regular basis there isn't a time I don't leave there without feeling SO lucky my baby will eventually (when that eventually is, is the question) be fine. If you ever feel like something in your life "sucks" go walk the halls of Primary Childrens. Your outlook will change, I promise. What an amazing yet horrible place. Amazing for the treatments and lives it saves yet horrible for the ones that no matter what cannot be saved. Dave and I are going to start volunteering at the NICU at IMC hospital for a Parent Support group, made up of former NICU parents. We feel it is the least we can do and provide the priceless service to others we were provided going through what we did. At our first "training" we heard stories of other parents wanting to join and the stories of some of these parents and what they have been through are beyond words. Especially when the outcome and/or end result wasn't so joyous (at least not in this lifetime) like ours. Of course I still get discouraged with the 'normal' things in life (wanting a house, endless cleaning, petty fights with your spouse, kids, bills etc) but stress will never mean the same to me again and what's truly important in life will never mean the same to me again. It's intimidating a little, even flattering, to be honest, that I get the opportunity to raise this amazing little boy who has taught me and others around him SO much! His next blood appointment is the middle of February and I'll do my best to keep this updated. Thank you so much to anyone and everyone who takes the time to read this and for all the tremendous out poor of love and concern. THANK YOU! THANK YOU! Infinity THANK YOU!
On a lighter note, I thought Reese and Drake had Daves nose but man oh man does my little Trev have it for sure! That cute little (ok not so little(: I know) 'turned up' nose a David nose or what?! Haha! So cute!! I should put one of Daves baby pictures in here his nose is IDENTICAL to all three of my kids! It's dominate for sure even my cute as can be nephews (Dave's sister little boys) have it!!