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!!
