Trev Spencer - Our Little Miracle Man

Look at me now!!

2010-10-27T04:30:00.000-07:00

Trevs Perspective (;

2010-10-27T02:02:00.000-07:00

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!!!!!

Indebted forever!

2010-10-27T01:39:00.000-07:00

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!!

San Diego

2010-10-27T00:56:00.000-07:00

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!

My B-Day!

2010-10-27T00:41:00.001-07:00

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!

My first baseball game!

2010-10-27T00:38:00.001-07:00

Wow! I loved it! Good thing too, cause this was probably (no for sure) only the first of a MILLION more baseball games I'll go to (:

Summertime!

2010-10-27T00:22:00.001-07:00

Oh I loved Summer! I got to do all sorts of fun things, swim, play outside, go camping...swim and swim somemore...

I LOVE my Bro and Sis

2010-10-26T23:48:00.000-07:00

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 Family!!

2010-10-26T23:33:00.001-07:00

ONE YEAR LATER!!! - and from Trevs Perspective

2010-10-26T23:06:00.000-07:00

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!

Almost a Distant Memory...

2010-05-31T10:44:00.000-07:00

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!

Fishing on The Provo!

2010-05-31T10:38:00.000-07:00

He loved it. Trev is a Webb for sure he likes it best being outside!

My LONG Tongue!

2010-05-31T10:26:00.000-07:00

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 (:

2010-05-31T10:16:00.000-07:00

Hanging out with my bro and sis! I LOVE them!!...Trev gets so excited when he sees Reese and/or Drake (:

2010-05-31T10:03:00.000-07:00

I love my toys!!

2010-05-31T10:01:00.000-07:00

I found my toes!!!

Growing Up!

2010-05-30T22:19:00.000-07:00

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.

NOT QUITE DONE

2010-01-31T20:52:00.000-08:00

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!!

FAMILY PICS

2010-01-31T20:48:00.000-08:00

TREV IS GROWING

2010-01-31T20:37:00.000-08:00

TREVS STATUS

2009-12-13T13:18:00.000-08:00

Trev is now 3 1/2 months old. His due date was December 5th, as you all know he had different plans. Trev now weighs just over 8 pounds and he is doing very well. He has now been home for 1 month and continues to grow. We still have tons of follow up doctors appointments, it seems that we are in there at least once per week. It also seems that there is someone within the medical staff at our home at least once a week to check up on him. When you have a preemie they keep pretty close tabs on them. The other day, home care services was at our home to give Trev a injection to prevent RSV. It is sad to see the little guy get a shot, cry for about 5 seconds and then he is fine. He has received so many shots, IV's, pokes, blood transfusions that he actually handles a shot as if he were an adult. I could not even begin to try and count how many shots that he has received in his short time here on earth. Reese is crazy about Trev, she cannot keep her hands off of him. She is very excited to have a baby brother that she can hold.

Miraculously, Trev is producing Red Blood Cells at a normal rate! Our last visit to the Hematologist, Trevs blood test showed that he was a little Anemic, but producing RBC's at a rapid rate! It is a matter of continued tests and follow ups to assure that his body will regulate all of its required functions. So far, he is on the right track and doing very well

THE MOMMAS PERSPECTIVE

2009-12-06T21:34:00.001-08:00

Wow! I've forgotten what having a little baby at home is like. Not that Drake is ready to leave for college anytime soon (even preschool) but it's been long enough with no diapers, bottles or midnight feedings (3AM, 6AM...) I forgot how time consuming a new baby is! Especially when the baby is connected by a five foot long cord to a machine that beeps with every movement and sigh. There have been many nights I've felt like I'm sleeping in a spaghetti bowl with all the wires and cords everywhere (yes he sleeps with us and will until he's 18 or so, ok maybe not but at least for the next few months, quite a few). My mom bought us a little 'co-sleeper bed' kind of a bassinet that works great for my peace of mind and still safe for him.
I'm not sure where to start so I'll just start at the beginning. First off I want to thank my incredible husband for starting this blog, it began as his coping mechanism and has turned out to be quite the inspiration and amazing story for many of you come to find out. To be honest I had almost next to nothing to do with it and I am very proud of my Davey for doing such a great job! Nonetheless I wanted to contribute MY perspective of these crazy last few months and the journey of my special, beyond words, Trevy.
Dave and I are extremely blessed to be able to have children so easily and it has required not much more than talking about it before there are two lines on a pregnancy test. I thank my Father in Heaven daily for that amazing capability that has come with such ease for us. Especially with Trev he was our "not really trying/hurrying to get pregnant, but if it happens it happens baby".
For some reason I thought this 3rd time around it would take awhile to get pregnant and was ok with that (my intuition was very off here). Well what do you know he was our quickest of all, only two weeks it took to conceive our little miracle boy. I am also very blessed in the regard I don't get very sick with pregnancies but something was different about this one this time around and I could never put my finger on just what it was (or going to be). It's hard to put into words exactly but I knew from the get go something was different. Not physically because nothing was wrong or physically different at first but in retrospect "something" (someOne) was preparing me for something because there was an almost nagging weird feeling in the back of my mind about this pregnancy long before anything was actually wrong. Some may say that's crazy but I know and believe that beyond a shadow of a doubt especially after what happened happened.
Fifths disease or Parvovirus B19, same thing. I have an incredibly strong (to say the least) love/hate relationship with those words/sickness. It all started when we were up in The Uintas and we noticed Drake (who had what I thought was a cold, I had what I thought was a cold too) also had really "rosy" cheeks I figured it was windburn but later noticed a rash on his back. He seemed fine other that a runny nose but I knew a rash was NOT good for me during a pregnancy and took him to the doctor the next morning.
Sure enough after one doctor told me he just had hives and I said,” no that’s not hives, I need another opinion”, a doctor asked me, "have you ever heard of fifths disease or slap cheek?" Actually I had, just very recently, but didn’t know much about it. Now we could tell you ANYTHING and everything you wanted to know about it! Anyway I was told that for the most part it's no big deal but possibly could be for a fetus and to go to my OB for a blood test, but that "odds were in my favor". If I had a nickel for every time I heard from very intelligent doctors and nurses "odds are in your favor" I would not be losing sleep at night over Trev's and my hospital bills, they’d be paid for and then some. After some research on my own, odds should have been in my favor. Basically the odds of passing parvovirus to a fetus are less than 5% and most adults are already immune to it, once you have it you build immunity. Well I did not have immunity to it and the cold I thought I had was actually the parvovirus. The rash doesn't usually appear in adults, most often just cold like symptoms and/or achy joints. The incubation period for parvo is anywhere from 4-21 days before symptoms appear after initial exposure. Some people carry an immunity to it no matter what exposure they’ve had in their life. It’s a very strange with varying degrees of symptoms and longevity, virus. But overall is typically no big deal for anyone but a fetus or possibly someone very old and/or immunocompromised. For a fetus and/or the immunocompromised it can cause anemia. Trevs situation however proved the contagious factor behind parvo is NOT what is most commonly thought to be though. That being it IS still contagious AFTER symptoms may seemingly be gone. Again though I was told "odds were in my favor" even if my baby did get it he or she could just pass the virus and never really be affected to our knowledge but on the off chance I needed a specialized ultrasound by a Perinatologist (a high risk pregnancy doctor) at IMC to know for sure.
This too is where things and the timing of this crazy story get even crazier. First off my blood results took longer than they should have (no one knows why) to get back which postponed "things". Then my doctor told me as long as I was seen within a couple weeks at IMC that should be fine. Well that didn't rest real well with me but initially I took his advice. But when I tried to make an appt. at IMC for sometime in the next 2 weeks for the ultrasound I could not get one for almost 4 weeks! I remember starting to bawl and almost arguing with the receptionist who told me this (she also told me it shouldn't be a big deal and it would be fine to wait that long!) so I called my doctor crying who agreed I needed to be seen well before 4 weeks and I said, “I want and need to be see as soon as possible, period!” So my doctor called for me. IMC hospital still couldn’t get me in as soon as I wanted so the appt. was made for the following Tuesday at LDS hospital. Had I waited and accepted the first appt. time Trev would have died, without a doubt from anyone. Oddly enough though had I been seen too early the virus might have not been detectable in the baby yet. So Dave and I went to LDS hospital September 1 all this had started, the rash on Drake and my “cold”, the initial blood test etc. about the 15th of August.
An incredibly nice radiologist performed the first ultrasound and after about an hour-long very extensive ultrasound everything seemed just fine. Then the radiologist did one final test to check the blood flow in our baby’s head, which would indicate if he was anemic, or not. She left for quite awhile and came back with the Perinatologist, who wanted to double-check everything regardless, but seemed especially concerned. They had yet to tell us anything. This doctor is one of the nicest and most intelligent doctors I've ever met but gave me (the beginning) of the worst news of my life. Which was, "your baby is in fact anemic and seems to have been affected by the parvovirus" SO anemic according to the measurement chart she questioned the accuracy and referred me to her colleagues at IMC for a second opinion first thing the next morning, my birthday.
On September 2 we met another incredibly nice Perinatologist who was baffled too by how anemic our baby was with seemingly no other symptoms. Other symptoms being ‘hydrops’ which are more or less pockets of infection around vital organs. Oh wait yes, toward the end of that appt. there were possibly other symptoms 'hydrops' were possibly starting to show or it may just be a “layer of fat” around the babies stomach. We would need to come back first thing the next morning to know for sure and EVERYDAY there after till we knew just how sick our baby was.
Let me tell you as nice and great as those doctors are there is nothing comforting knowing and being told our baby was "the talk" of ALL the Perinatologists and this was VERY rare for parvovirus to actually affect a fetus especially this severely. I knew that day when that doctor explained the options to us which were; follow the baby with ultrasounds DAILY to see if he could pass the virus himself or do an inutero blood transfusion to correct the anemia if he seems to get sicker. I knew the doctor knew that day our baby would need the transfusion but I could tell he wanted to give Dave and I one more day of hope. Sure enough the next morning Sept. 3 the 'hydrops' were spreading and the baby was very sick and would need the in utero blood transfusion.
Let me say at this point NEVER did I look at this situation from a pessimistic standpoint, I've never prayed, got blessings and "thought positive" so hard in my life but again in the back of my mind I knew something wasn't right. Even the weekend before all these ultrasounds I told Dave numerous times as much as I didn't like admitting it out loud "something isn't right with this baby".
Unfortunately my intuition all along was correct this wasn’t going to be a “normal” pregnancy, my baby was VERY sick and needed an inutero blood transfusion at 6AM Friday morning September 4th.
At 4AM that morning of the 4th I woke up panicked beyond consoling. I had been very calm all week considering and was trying to remain optimistic, but it all hit me at once and I lost it. I'm losing it now just thinking about it. I woke up Dave and said we need to go to the hospital NOW our baby is sick and I cannot feel him moving at all (wow just writing/reflecting about this I am bawling at the horrible feeling I had). Dave's mom was coming to stay with our other kids and my parents were meeting us at the hospital for what should have been, although a daylong but out patient procedure. We called Dave's mom told her we were going now and got there at IMC in record time. We were supposed to go to the Maternal Fetal and Medicine ward for our transfusion at 6AM but being 5AM we had to go to labor and delivery well thankfully we heard Trevs (we didn't know it was Trev at the time) heart rate and he was still in fact alive (although we'd find out in about 3 hours barely alive). Little did I know the nurse with curly brown hair whose name I can't remember who found Trevs heartbeat was one of the first of many nurses I would come to love and appreciate beyond words.
At 6AM we did go upstairs to the Maternal Fetal and Medicine ward and get "checked in" and prepped for the inutero blood transfusion. Although I was ready the transfusion didn't start when it was supposed to due to lab delays and although I had the utmost confidence in the Perinatiologist performing the procedure I remember having a 'strange' feeling that was beyond just nerves however once it got going I did relax a little (Dave admitted to me later he also had a weird feeling). It is a very intense procedure with two Perinatologists sitting on either side of me with ultrasound screens monitoring every move as well as many nurses in the room to help with the very intense, painstakingly, delicate procedure. I was told I was a perfect candidate for this procedure (if there has to be one) and was told just before the procedure started although I'd been given a steroid shot the day before the odds of them having to "take" (deliver) the baby for any reason was LESS THAN 1 PERCENT!!! In a nutshell what happens is they insert a needle into where the umbilical cord and placenta come together and draw some of the babies blood to see just how anemic the baby is then they go in again and transfuse with the amount of blood based off that finding. Well the first part went ok but the second time around it was taking forever to get the needle where it should be. For a baby who a couple hours ago wouldn't move at all suddenly became VERY active. They usually don't have to sedate the baby and told me being the "perfect candidate" they shouldn't have to sedate mine, well he all the sudden was very active and they would need to sedate him! This is where I am not sure what or where or how things went wrong all I know is they finally got the needle where they wanted it and my baby kicked it out! Sothe doctors tried switching places and within seconds pure chaos! JANNELL GET ON YOUR SIDE, GET ON YOUR SIDE, THE BABY DOESEN'T HAVE A HEART BEAT WE NEED TO GO DOWNSTAIRS AND DELIVER IT! A blood clot had formed and stopped the babies heart. The really strange thing about this is they were actually worried if anything he was so anemic his blood wouldn’t clot but the exact opposite happened!
Whew writing that isn't easy for me even with Trev sleeping soundly right now in the next room. I remember saying, "NO NO NO" and being rushed downstairs. Although obviously I went into shock at this point I do remember from a dream like perspective hearing and seeing panic on doctors and nurses faces and running and yelling and bright lights. I remember asking for Dave (who had been in the transfusion room with me but was left behind due to the emergency of the situation) and saying, "are you sure, are you sure. Please no!" I remember the doctor saying," we'll check the babies heart rate one more time," and saying "it's 144, no wait that’s yours the baby still doesn't have one we have to get it out" and then having a 'mask' (to knock me out) put over my face. Let me tell you there is nothing worse than seeing panic on doctor’s faces, nothing!
I woke up after the emergency c-section ON FIRE! I remember saying, "my stomachs on fire, my stomach is on fire, and what was it? (Meaning the baby we did not know before if we were having a boy or girl). I remember seeing a doctor I hadn't seen before and him saying, "a boy" and thinking "hmm really" and then falling back asleep.
I seem to have a very high tolerance for drugs and usually pain (I learned that the hard way with Reese, another crazy story). I woke up before they had a chance to give me any pain medication. For the transfusion I had gotten a 'local' numbing shot for where the needle went in and a mild “relaxer” because I couldn’t quit shaking but nothing otherwise (they were actually about to give me more “relaxer” me when his heart stopped). I was told later I must have woke up very quickly from the emergency c-section because I did wake up still in the delivery room literally feeling like someone was waving a blow torch across my stomach. They were in the process of getting me medicated but more or less I had just had an emergency c-section and could feel exactly how it feels to get your stomach ripped open. Luckily I fell back to sleep quickly. I recall next waking up in another room and finally with my Davey by my side. All I remember though is him telling me he'd just about gotten into a fight (so not Dave) with the blood guy (long crazy story). The nurses had attempted to "gown" Dave so he could be in the delivery room with me but we were on the 2nd floor they had me down on the first floor in labor and delivery and Trev out within 7 minutes! A hospital record (not one I strived to have)! Another crazy thing about his delivery is just the day before the baby had been in an “upright” position and the doctor told me later she was shocked during the delivery he had turned to a “head down” perfect position for delivery. Then all I remember at this point is coming in and out of it and saying over and over "my stomach is on fire". I must have been out of it for quite awhile because the next thing I remember is waking up and seeing my parents, Daves parents, crying and my brothers, Toby and Shane and talk about Kasey being on his way. I was still in a lot of pain and I remember Toby pacing and looking at me with a pained expression on his face and one thing I'll never forget is my brother Shane attempting to comfort me and leaning over me saying, "it's going to be ok, it's ok" I'll never forget that, I remember that very clearly. I remember getting a blessing by Toby. I do recall in addition to saying my stomach is on fire asking over and over "is he ok?" meaning Trev. I remember being told Kasey had given Trev a name and a blessing and had said specifically, "to fight and fight hard for his life." Like I said we didn't know if Trev was a boy or girl (neither did the doctors who delivered him for quite some time due to the rush to save a babies life not see what the gender was) and being only 26 weeks along we had thrown around some names but weren't sure. I knew I wanted a little boys middle name to be Spencer for a couple different reasons (another long story) but we didn't have a first name, we had talked about Trev but were concerned about how it went with Webb but due to the circumstances he needed a name immediately for his blessing and it just seemed right.
I recall being shown a picture of my Trevy for the first time. The staff is amazing and knowing I was in no condition to go see Trev just yet they took a picture of him for me. Amazingly Trev was stable but come to find out was in fact upon delivery more or less dead. He had a hematocrit count of 14! It should be over 40! I think Dave mentioned in another post being told weeks later by a nurse, that was in the delivery room, she didn't think our baby would make it and he was literally the color of snow.
I have never been in so much pain in all my life. I USED to think I had a high pain tolerance. I was told my body was in shock (on all sorts of levels) and due to the nature of the c-section my body wasn't 'ready' for that kind of trauma and I was in the pain to prove it. Honestly I don't recall entirely seeing Trev for the first time, thanks to a morphine drip. I recall wanting to be told over and over he was ok but scared to death to actually see him. I remember laying in my recovery room not wanting to sleep, scared of what I'd 'see' or rather dream about. I remember being scared to death of having a dream about my baby being dead and it being a premonition. I did in fact dream over and over (hallucinate? thanks to the morphine) about hot coals, I am sure stemming from feeling like I was on fire earlier. I am debating about how much to share here but I am going too...In the midst of my 'hot coal' dreams I was awake at times praying (pleading) for comfort (not physical in this regard) and for a split second I saw/dreamed about little baby boy in a white crib dressed in a little red onesie smiling at me. I also recall staring at a "Its a BOY" balloon and having a moment of great comfort in the fact it was a little boy and somehow I knew him and regardless he was mine forever. That first night although distraught beyond words, Dave and I could literally feel the power of prayers, and not ours. I remember Dave saying to me, "can you feel that? I know people are praying for us right now" I could feel it.
I am not going to lie however; those feelings were short lived as I entered into the hardest trial of our life. Never have I felt such despair and pain knowing my baby was having to 'fight for his life". The first few times I saw Trev were hazy and oddly enough I didn't want to see him I just wanted to be told constantly he was fine. Plus it was extremely painful to get in a wheelchair to go see him in the NICU the pain was agonizing on all sorts of levels to do so. I remember telling people very seriously "DO NOT give me odds about his outcome or condition, odds are not in our favor right now". Or actually where they? We may never know in this lifetime.
I remember the nurse who was taking care of Trev one of the first times I saw him, Janet, I love this woman more than I could ever express. I will never be convinced otherwise that this woman isn't and especially for me a God send. Right up until the time we left Janet, who only worked part time and with nurses crazy schedules, she was there EVERY time I was in need of this particular presence she carried and comfort she gave me. I had my first of many "million dollar conversation" with her. I call certain conversations with some of the staff at IMC conversations that brought me comfort I wouldn't trade for a million dollars, no joke.
I don't even know how to describe some of these INCREDIBLE nurses and doctors. No doubt I experienced a fair share I wanted to strangle (even completely forbid from taking care of my baby) but overall I met and bonded with nurses and doctors I'll never forget and didn't even realize people like them existed. Lisa was also one of the first nurses to take care of Trev. I LOVED her still do. Her and I just clicked. Again it’s hard to put into words but the comfort and ease she put me in was priceless to me. Having had babies of her own that were born early and especially her little boys scary incident with surgeries and hospitals, she understood and sympathized with me and always put me at ease. She was very realistic yet optimistic and knew of my fears before I even did sometimes and always made me feel like everything would be fine no matter what. I loved just chatting with her about other things too and I miss her and that very much and I fully intend on working with her someday.
I could go on and on about the people that inspired me and write pages and pages about them and the amazing conversations and comfort they brought me I truly could but I’ll have to try and summarize as best I can. Jill was with me the first time I held Trev and was the nurse who instigated it. I remember crying at Trevs isolette one day and her saying “you need to hold him, that’s all there is to it.” It was quite the process and earlier than I expected to be able to do so and I’ll never forget her for it. She cried right along with me (we always made each other cry) the first time they put Trev (along with a million cords and tubes) in my arms. She was such a strong advocate for Dave and I and we absolutely think the world of her. Holding Trev for the first time was bittersweet and the only thing I could think of was I didn’t dare move and it felt like holding a kitten. I will never forget it.
Dave was the respiratory therapist who was there for that along with Jill and he was a quiet amazing man who you could tell loved his job and had a soft-spoken funny sense of humor. I remember thanking him for helping me hold Trev the first time and him saying seeing a mother hold their baby especially for the first time was the best part about his job.
Georgi was another respiratory therapist who I loved and Trev LOVED, no kidding. Believe it or not a babies saturation levels will improve (go up) on their monitors when their mother comes into the room and in Trevs case whenever Georgi came into the room Trevs readings would heighten and you could tell he knew her and loved her presence.
Its amazing right from the get go a baby knows their mother even when they have yet to be held by them or are hooked to a million monitors and machines, the demeanor of the baby changes when their mother or someone they get to know from the staff enters their room. He would do better too with his respiratory challenges etc. when I was there or certain staff members were with him, it was extremely bittersweet, beings I couldn’t be there all the time. I used to tease certain staff, “can you please just work everyday until Trev goes home?” Stacey was another favorite nurse who really got to know Trev and took incredible care of him. She would always take the time to do cute things to his crib and take pictures of him. It was comforting and fun to be around. Many of the nurses would take pictures of him even make scrapbook pages of him for me. I kind of hate singling people out cause like I said there are so many I think so fondly of and have many dear memories with.
Leanne was another incredible nurse we loved having and was so knowledgeable and amazing to have. I had some great conversations with her I’ll always remember.
There were two Karens I think the world of, one a nurse and one a respiratory therapist. Karen the nurse was with Trev the weekend he was born and again in the end at a crucial time for Dave and I and she was an amazing comfort for us. When Dave and I reached a breaking point she was there to sympathize and literally cried right along with us and for us, we will never forget her or the amazing message she left for us one day when we were having an especially hard time.
Karen the respiratory therapist was another favorite of mine who was very realistic yet optimistic an overall just an amazing woman.
Robert another respiratory therapist who is probably one of the smartest people I’ve ever met. He knows so much about the respiratory system it would blow your mind yet he also knew how to explain it so you could understand. I would save certain questions just for him and get “mad” at him for not working day after day. Dave and I had some great conversations with him and really miss seeing him.
Words cannot describe what it feels like to leave your baby in a hospital but words cannot also describe what it is like to have people who love and take care of your baby when you cannot as thought it were their own. Like I said I had many nurses cry right along with me and therapists and doctors take such great care and concern you’d think they were caring for their own child. There is also a parent support group at the hospital made up of parents whose babies are past and present NICU babies. Having a baby in the NICU and talking to someone else who has had one (or twins or triplets there are lots of those) in the NICU is priceless, truly priceless. People can try to emphathize but when you can actually talk to someone who has been there the bond is instant and unbreakable.
Trish, Cathy, Naomi, Michelle and Drew are only some of the amazing mothers and fathers who “have been there” (or are there) and now spend a great deal of time and effort to provide comfort and support. They take pictures, provide gifts, have scrapbook hour. Every Wednesday they have a night where we can meet, eat, cry, laugh, and share time and information about the trials being the parent of a preemie brings. The educational classes are amazing and priceless as well. They also have stories that make can make Trevs look like a walk in the park. My heart goes out to them especially those mothers whose pregnancies were not easy to come by even impossible and who were often times left fighting for their own lives along with their babies.
My heart goes out to a nurse I (Trev) had only once but who shared a story with me about her little granddaughter who is currently fighting for her little life due to liver issues. I’ll never forget her or the conversation and bond I had with her and will continue to pray for her granddaughter daily. As well as one more nurse who only had Trev once or twice and shared with me she was doing everything she could do have a baby of her own.
Dr. King, Dr Dolcort, and Dr. Beechy will always hold a special place in my heart. I’ll never forget Dr. Kings quiet yet amazing intellect. I “owe” Trevs amazing lung development and turnaround to Dr. Beechy and respect and am in amazement of her beyond words. I’ll never forget the care and concern of Dr. Dolcort, talk about a caring, amazing doctor/man wow! He is also the Dr. who lined us up with Dr. Yaish. Dave and I literally had our jaws hanging open at the intellect of this hematologist from Primary Children’s yet so incredibly humble and caring. Becky(s), Lexi, Stacy, Hillary, Bonnie, Connie, Marie, Natalie, Lin, Amy(s), Michelle, Jen, Kimberley, Whitney, Mark, Sharon, Nurse I can’t for the life of me remember her name but loved who helped with little Trevs last eye exam, the security guard who’d give a friendly knowing nod night after night without another word. Rian and Sarah the nurses I had in the maternity ward who cried right along with me those first couple days and ultimately the first of many who have inspired me to become a nurse myself one day. I probably shouldn’t have named names because I know I’m leaving people out. Lactation consultants, Physical Therapists. Thank you and I love you all.
Truly never have I met so many intelligent, caring, amazing, and compassionate people all in one place. Lisa told me in the beginning something along the lines of actually missing the NICU someday and I remember thinking, “are you kidding?!” But like usual she was right. I defiantly don’t miss leaving my baby night after night anywhere but my arms but I do miss SEVERLY the people and friendships I no longer get to have on a daily basis.
I’m sorry this is so long believe me it could be longer. I am a changed person to say the least. The night I brought Trev home I was sitting alone with him and looked at him and said, “thank you, Buddy, thanks for teaching me the ultimate lesson in gratitude and what’s important in life.” I really did I thanked him over and over this little tiny baby for being such an inspiration in my life and others. For listening to Kasey and fighting so hard to give Dave and I the incredible opportunity to raise him. He has been through more in his short life than most of us can imagine. He had his blood drawn today (for the millionth time) and the courage and strength in his little body and eyes as he barley cries and only flinches for a second, is beyond words. I don’t know how we did it I remember feeling like I was not going to make it through that first week and how on earth was I going to get through the next three months. But because of the prayers and support of the people around us somehow we did.
There were times I recall watching him getting poked and prodded and struggling to just breath that it put my “stomach on fire” pain to shame. The first time I heard his hoarse little cry was the most bittersweet moment in my life. He had been on a ventilator so long (they can’t make audible noise on a vent) that when he finally came off it his little voice was so hoarse. The first time I heard that hoarse little cry I literally had to grip the side of his isolette, turn my head, and squeeze my eyes shut to bear the stabbing pain it brought to my heart. The physical and emotional pain it brings to your heart watching your little baby suffer knowing there is nothing I can do is indescribable. There were more than a few times especially in the beginning it took everything I had not to rip all the wires and tubes out of him and take him and run. It was so difficult knowing if I did that he would die that, that horrible plastic tube going down his throat and all the wires, needles and beeping machines as awful as they seemed were keeping him alive.
Having your little girl so excited about a new baby brother but not being able to see him ripped my heart out too. Dave and I did our best to hide our emotions from Reese and Drake and I explained to them especially her as best I could that “Trevy came out of mama way too early and was very sick and he has to get bigger and better at a special hospital before she could see him or we could bring him home”. I’ve had the amazing opportunity to stay home with my kids and we are typically glued at the hip(s). After I had Trev I actually left the hospital earlier than recommended because as much as I hated leaving my new baby I needed to see my other babies so bad I couldn’t stand it one more day (Reese got fifths disease too, although she never really knew it or noticed, and she still had a little of the rash the week Trev was born so the last place she needed to be was at a hospital full of pregnant women so they were not able to visit even me in the hospital.) At first it was fun to go to the Grandmas and Grandpas and Uncles all the time. I tried my best to divide my time between Reese and Drake and going to the hospital but it became extremely difficult very quick. Especially for my little, smart in tune Reese. She could feel the stress, sadness and tension despite mine and Daves best efforts not to. I finally told her it was ok to cry and be sad our baby was sick but we’d make it and needed to be strong too. She listened and her and Drake and the grandmas and grandpas and help were amazing but it finally got to her by about the end of October. They tell you your baby will typically be in the hospital for however early they were long. So Trev was 3 months early so he’d be in the hospital about 3 months etc. In September I thought I was going to die, by October he was mostly ‘out of the woods’ and I even thought if I can make it to Halloween then we are almost there and we are actually going to get through this. But come Halloween his blood still wasn’t doing what they’d hoped and was leaving intelligent, amazing doctors scratching their heads. As Dave has written about this in other posts I won’t go into too much detail since he has other than I remember thinking ”ok we’ve made it to the end of October and the “light at the end of the tunnel” we thought was there was now in question. I lost it, my strength for enduring this situation was gone. Especially, back to Reese, when I noticed the effects it was having on her. One night I could hear her crying, she had started sleeping with us weeks before but this time she was in her own room at 2am crying by herself. I went in there and asked her what was the matter and she cried, ”I can’t find Trevys blanket!” I about died. I didn’t realize she had started sleeping with a blanket she wanted to give to Trev when he got home but never said much about it and to find her crying in the middle of the night looking for it about killed me. Then about a week later in the midst of not knowing what to do with his blood issues she broke down and told me, “Mama I don’t want Trevy to be born early anymore”. That too caused me to turn my head and squeeze my eyes shut and muster up every ounce of everything I had to keep going.
Luckily, much to our shock it was only about a week later we found out we could in fact take him home even earlier than we’d hoped for originally. That was so funny to be sitting in rounds that day (the nurses, doctors and other medical personnel would “round” each day about the babies and there progress, needs etc.) It had finally been established Trev could be treated for his blood issues on an out patient basis, well I did not realize aside from that he was all but ready to go home. Turns out Dr. Dolcort was talking about his discharge from the NICU along with everyone else for a good 3-4 minutes and I said something about it (taking him home) being in a few weeks and Lisa said to me laughing, “No, no Jannell you’re not listening he means this weekend”. WHAT!!! Last week he was a huge question mark and on deaths door and now he’s going home??? Yep his amazing turnaround was in fact a miracle. Thanks (partly) to Dr. Yaishes knowledge and one more blood transfusion and IVIG treatment his turnaround was a HUGE 360. I say partly because ultimately I know (and there are nurses and doctors who’d wholeheartedly agree) his turnaround and just the fact he is alive at all has way more to do with than just medical technology. I had MANY MANY nurses tell me they don’t know how he is alive and doing as well as he is. How he didn’t have more issues (Trev did not have many of the ‘typical’ preemie issues the doctors and nurses thought he would have) and what a miracle baby he is.
I know some of the decisions Dave and I made just in the last few years have blessed us beyond comprehension. I also know without the prayers, blessings, fastings and support of family, friends and neighbors he would not be here today. Trev has taught me more about gratitude and about what really matters in life and the compassion of others more than I could ever truly express. I’ve also learned a great deal of empathy for those of you who’ve been in life changing and/or heart breaking situations especially if the outcome wasn’t so joyous, my heart and prayers go out to you. Thanks to ALL of you more than I could ever express. (I have a list of ‘thank yous’ I WILL write). I especially want to thank Carson and Betsy and little Izzy Denny for lighting the way for us. Thanks to all the people who dedicate their lives to saving my babies and others. Thanks to Brooke and Dr. Smith for listening to me and helping me above and beyond his duties. Thanks to all of you for the gifts (especially an extremely generous one from people in Montana I hardly know and an extremely helpful gift from Emily Stevens), dinners, cleaning, phone calls and offers of help (especially Suzanne). Thanks to all of you for helping and watching Reese and Drake. They were each other’s support and became closer than ever. She is thrilled beyond words to have her new brother home and my boys definetly have 2 mothers. Drake thinks his “TreB” is great too. Thanks mostly to little Trevy for teaching us all valuable lessons especially and including being “an exception” and learning tool in the medical field of parvovirus. My little Trevy is finally asleep at home next to me. Even when he’s not and awake at 12, 3 and 6AM…and I ‘m about to fall over from exhaustion or I think I’m about to go crazy from not being able to leave my house (or not trip over beeping cords) or have two seconds to myself, all I have to do is picture him in his isolette and/or what could have been to recharge and not think twice about any of those things. Thanks to my incredible husband for starting this blog and being my amazing husband, father and best friend. Although there were times the stress would get to us and we’d direct our frustrations at each other I’ll never forget or would change the closeness and strength this situation has brought into our marriage. I remember literally clinging to Dave those first few weeks and not letting him out of my sight. He is an incredible husband, father and man. Trev is here for an extremely special reason. I am thankful beyond words mostly to my Father in Heaven and flattered to say the least that Dave and I get the opportunity to raise him. I made some pretty serious pacts and promises with my Father in Heaven in order to do so and cannot wait to keep them and see him grow and teach us all even more than we’d ever imagined.

FOLLOWERS

2009-11-18T22:32:00.000-08:00

This has been an amazing journey! It is amazing to see how much this blog has grown. We have received support from so many thru this journey. I want to thank you all, your prayers have been felt and we are grateful! Please stay tuned as Jannell will be posting soon as she can find a moment.

TREVS PRIMARY NURSES

2009-11-18T22:16:00.000-08:00

Here are two of the most amazing people in the world! Stacey is in the middle and Jill is on the right. I remember the first time that I met Stacey as she was taking care of our son. It was a very difficult day for me, she was so positive and her personality was so comforting. She loves our little Trev and is an amazing nurse. I can't even begin to explain how thankful that we where when Stacey had our son. I looked forward to hearing her voice and positiveness each morning that I would call in to check on Trev. Jannell and I would be able to relax knowing he was in good hands.
Jill was a great comfort for both Jannell and I, there is something about her personality that was also very comforting. She would take the time to sit down and talk to Jannell and I, she wanted to help us and was always willing to lend an ear. She is an amazing nurse and even more of an amazing person. We are so grateful to have had her as one of our primary nurses. I want to take a moment to thank Jill and Stacey as I know they are following this blog. Our lives have been blessed because of you guys and we are grateful beyond words. Thank you for always being there for us and providing the support that Jannell, Trev and I all needed. We Love you guys and could never put into words our appreciation for you.

TREVS HEALTH

2009-11-18T22:00:00.000-08:00

Our little Trev has many outpatient doctor appointments to come. As you all know our son has not been producing Red Blood Cells on his own. The donor transfused RBC's will live for 3 weeks and then they will die, which means that Trev has about 10 days left of donor cells to sustain him. As I posted earlier,Trev did receive the IGIV transfusion with is immunoglobulin therapy that should boost his immune system to help him to produce RBCs. We do not know what his outcome will be, we meet with the Hematologist on Thursday the 19th for further analysis and testing of his RBC's and RETIC count. We are hoping that after Trev received the IGIV therapy that his body kicked in and he began the process of producing RBC's. He may very well need another blood transfusion(s) in the near future, but time will tell. We do know that we are in good hands with Dr. Yahish at Primary's and we will keep you posted on Trevs lab results. Trev also has one eye that is about 98% developed and must be followed up on due to his ROP condition. The outcome of his eye situation is very promising and we are not worried, his other eye is cleared 100%. His eye exam is also on Thursday the 19th and they should be able to give us the immediate results. Please keep our little Trev in your prayers, Thursday is a big day for him, as are the days to come.

PEACE

2009-11-18T21:58:00.001-08:00

I think this picture speaks for itself...

FAMILY TOGETHER

2009-11-18T21:27:00.000-08:00

Trev is currently 6 lbs. 13 oz. his gestational age is 37 weeks 4 days. He is a cute kid and a extremely mellow baby. The NICU required us to stay in a room at the hospital with Trev alone for four hours. They want to make sure that we can handle all of Trevs needs with wis oxygen, feeding, medication, monitors etc. on our own, well our little Trev put us to the test. About three hours into our stay we were amazed of how well he was doing at such a low flow of oxygen support. Jannell finished feeding Trev and he was sleeping on her lap, all of a sudden Trev started to choke. Jannell and I were panicked, but we had been trained if this was to happen. He was chocking for about 2 minutes and getting very little oxygen. His heart rate on his monitor was dropping extremely low, and he was de stating at a very low number. He started to turn purple and that is when I called the NICU to tell them that our son was choking. They were in our room in less than 15 seconds as they helped us stimulate him and educated us that this is very common in a preemie, that more than likely it will happen again. So far it has happened at least once a day, it is very scary, but we know what to do and we are managing. It is comforting to have his oxygen hooked up to give him an extra boost if he needs oxygen, but it is difficult for me to go to work and leave my wife home alone with Trev knowing that this may happen while I am away. She is a great mom and handles the situation very well.
We graduated our stay and we said our goodbyes, Reese and Drake met us in the hospital lobby, Reese was so excited for this day to come as she had waited 71 days and was dealing with the anxiety of her parents leaving every night, and knowing that her little brother was sick. When Jannell and I saw our kids we both started to cry as we have waited for this day for a long time as well. Reese reacted exactly how Jannell and I imagined, like her mom. She was bursting inside with joy, but does not show emotion on the outside due to being the center of the attention. Drake kept saying that it was his little brother "Treb" and was trying to poke him in the eye. It was snowing extremely hard outside and we were anxious to get him home. My family helped us so much to prepare our home as it was spotless and prepared at our arrival. Reese wants to hold Trev every second, she held him for 90 minutes straight the day he came home. Drake wants to hold him all the time as well, he kisses him all the time and cannot stop touching him. What a blessing it is to have our family together...

AFTER 71 DAYS TREV IS HOME

2009-11-18T20:57:00.000-08:00

Jannell and I never thought this day would come, but it is here. Our little guy came home on November 14th, 2009 after 71 miraculous days in the hospital. One of our primary nurses stated to my wife early in Trevs stay at the NICU that "we will miss the NICU when we go home". I remember talking to my wife about this comment, we both agreed that there is no way in the world that we could miss the NICU, we wanted nothing more than to have a healthy son and to be blessed to bring him home. Well, Lisa was right! We miss the staff of the NICU dearly, we developed a relationship was so many at the NICU and we consider them some of our dearest friends. We were deeply saddened knowing that we would not see our dear friends who took such great care of our son. I think it hit me Saturday morning when we went in to go thru the discharge process with our son on saturday morning. I watched Stacey Jackson our primary nurse pick up our son and hold him closely. I could see it in her eyes that she was going to miss him dearly and that she loves him. There were many tears shed as all of our friends greeted us on our way out of the NICU. It has inspired Jannell and I and has shaped our lives in so many ways. Jannell is inspired to be a NICU nurse someday in the future, she would be incredible and can bring a true comfort to so many people with the ability to relate as to what parents will be going thru and to provide comfort. I have been inspired to share my experience with so many! I am planning on volunteering my time with the NICU parent support group who picked me up so many time thru our experience in the NICU. This is the least I can do, I feel honored to help others cope with one of the most difficult experiences they will encounter in their entire lives! Having your child in the NICU is a struggle beyond words, I remember so many days where I had to pick myself up and force myself everyday to function. I drew a lot of my strength from our parent support group. It was comforting beyond words talking with people who could truly relate and understand how you feel. I feel blessed to help others thru there experience for a long time to come.

2009-11-12T23:54:00.000-08:00

THE MIRACLE OF TREVS LIFE

2009-11-12T21:34:00.000-08:00

WOW! I do not even know where to start... So much has happened this week, Trev is 6 lbs 7 oz. today, he has graduated to level III feeding, which means he is now required to eat a certain amount to stay on this level, he is doing quite well. His oxygen setting is down to 1/4 of a liter and he will soon be off of oxygen support. We watched our son go thru so much this week. He is truly a miracle! Trev has been so sick, he still has not been able to produce RBC's. They have been pushing him and pushing him for 10 days to see if his body would kick in and produce RBC's. I cannot even begin to explain the pain that Jannell and I have suffered watching our son deteriorate every single day. His hands were as white as paper, I could see all the blood vessels in his little head as he became sicker and sicker. The treatment plan was to us that they need to push his body to the point that he is required to produce RBCs to survive. His Hematocrit got to the low point of 20 on Sunday, it should be above 40! This is extremely low. My little boy is such a fighter, he was so tired and was becoming symptomatic as he was fighting for his little life with every ounce of his body. He was starting to de sat at low levels which he has not suffered from for 3 weeks. Jannell and I have been completely crushed as every second that goes by our sons health deteriorates. Jannell and I left the hospital on saturday night worried sick about Trev, but had an overwhelming feeling that the something else was going on inside his body and the treatment was wrong. We went home and starting searching on the web for answers. Jannells mom sent us an e mail on a disease called Transient aplastic crisis anemia which is caused by ParvovirusB19 "fifth disease" The reason that Trev was born early is because of the development of fluid around his organs (hydrops) due to being exposed to the parvovirus. Trev has received numerous blood transfusions that will sustain him until the donor red blood cells die, but he will not produce RBC's on his own. Jannell and I discovered a treatment called IGG therapy, which is an intravenous administration of immunoglobulins into the blood stream thru a transfusion. We brought this discovery to the attention of the NICU. They told us that Trev does not have the Parvovirus in his system anymore and that it would not be of any use, but Jannell and I disagreed. The NICU staff determined that the reason for his failure to produce RBC's is more than likely not due to Parvovirus because he is not shedding the virus anymore, it only lasts for 2-3 weeks. Trevs condition is so rare, and they could not diagnose why he could not produce RBCs. There is a condition called Chronic Parvovirus that will linger in the body and suppress the bone marrow which disables the bone marrows ability to produce RBC's. We went to the NICU for rounds on Sunday morning again with our researched material. They stated "Trevs crit has dropped to 20 and we want to continue to push him until Wednesday to produce RBCs on his own." They again stated that they do not know why he is not producing, but we need to continue to push him until he produces RBCs on his own. I had an overwhelming feeling that this plan was entirely wrong, I told them that this idea does not make any sense,that we have been pushing Trev beyond his threshold for over a week, and that we need to do something different. They said "ok" what would you like us to do? I stated that they should do a blood transfusion as soon as possible and that I was concerned for his life if they did not. I stated that I have watched him each day become more and more sick and there is something else going on inside his body. They told us that we know our son better than anyone and asked us what we would like them to do? I can't even begin to explain how difficult it is to make a decision of this magnitude and it also struck me with the realization that the NICU staff really was stumped as to how to treat his odd symptoms. We decided to transfuse him that day to boost his crit levels. The NICU staff at IMC is one of the best in the country, but Trevs condition is well beyond "textbook" treatment. I was walking into the NICU on Sunday afternoon to be with my son during his transfusion, my phone rang and it was my wife and she was crying. I asked her what was wrong? She stated to me that she was planning on signing our son Drake up for a Kindermusic class which started in September. At the time she had a feeling for some reason to not sign him up for the class, she informed me that she received an e mail from the Kindermusic class instructor that the entire class has been infected with the H1N1 virus and to not attend the class. We felt so blessed that Jannell followed her instinct and did not sign him up. This could have been devastating if passed to our family and potentially to Trev. I felt an overwhelming feeling of comfort as I looked at the whole picture and this entire experience for the last 10 weeks. I truly believe that everything has happened for a purpose and that Gods hand is watching over him and protecting him. I entered Trevs room, he had an IV inserted into a vein in his forehead as they were just starting his blood transfusion. I picked him up, sat down, and held him for 3 hours. As he laid in my arms sleeping, I watched him slowly start to turn pink and receive all of his color back as his RBCs were boosted with donor cells. The wonderful staff of the NICU set us up with an appointment with Pediatric Hematologist Specialist Dr Yahish. He is a world renown Hematologist who has been practicing for 45 years. He has wrote numerous books and is the most brilliant man I have ever met in my life! We met with him on Tuesday, I remember the sick feeling of helplessness that I felt in my gut on the way to visit Dr Yahish, Jannell and I were extremely concerned for Trevs health. We sat down with Dr. Yahish as he blew us away with his knowledge of blood and the Parvovirus, in fact, he actually knew the man who discovered Parvovirus. Jannell and I took all of our research information of the Transient Aplastic Crisis Anemia as I stated above. My jaw dropped as I listened to this man re-site pretty much word for word all of our research that we performed on the internet, he answered my 3 pages of questions before I could even ask them. He stated that he wanted to see Trevs blood smear as soon as possible to see if Trev is a candidate for IGG therapy. This man has only seen 3-4 cases of Parvovirus in babies and that it is extremely rare. Based off of what we stated to him in regards to our sons condition, he felt that he was more than likely a candidate for this treatment. He stated that in his 45 years, he has never performed a IGG therapy on an infant, but it would not harm him. We left his office overwhelmed with joy knowing that there was now potential hope for our son! I called the NICU immediately, told them the news, and to get the blood smears to Dr. Yahish immediately. Today we received the word that Trev is suffering from the Parvovirus and it is still suppressing his bone marrow and THAT is why he is not producing RBCs. Dr Yahish felt the IGG therapy would benefit Trev, he received the transfusion today.
My wife attended rounds this morning and receive the news of the last thing that I would have ever expected. They stated to Jannell that Trev is doing extremely well, he is eating, growing, not suffering with apnea or de sats and it is time to send him home this weekend on Saturday. Jannell stated to me that she did not understand because she was so shocked, they had to repeat the news to her. To say the least, she was stunned! The staff at the hospital actually chuckled at the shocked look on Jannells face, we have been there for so long we are great friends with all of the NICU staff. They continued to state that Trev is doing so well we cannot keep him here he must go home, they will treat his blood complication as an outpatient at Primary Children's Hospital. OUR SON IS COMING HOME!!!!!!!!! This has been the most difficult/exciting week of my entire life! Complete one extreme to the other to say the least. Trev was on the brink of death and six days later they are stating to us it is time for us to take our son home. Jannell called me and told me the news over the phone. She had to tell me 3 times because I refused to believe her as I am sure you can imagine. He is scheduled for discharge sometime this weekend, we were planning for sometime in December for Trev to come home at the earliest. To be honest we are so caught off guard we do not have anything ready for him. We need to paint his nursery, buy baby supplies, clean, etc. as we prepare for him to come home! I want to mention how grateful that I am for the NICU staff at IMC. Without there care,treatment, and support there is no way that my son born 3 months early would have had a chance at life. The hospital is truly amazing and we feel blessed beyond words for their care of our son. I want to give a special thanks for all the friends that have been praying and fasting for our son. Your support is what has carried us thru this entire experience. I am so grateful to be a member of the Draper 7th ward, the love, support, praying and ward fasting for our family has strengthened us beyond words and I want you to all know that your prayers were felt and you have blessed our lives to a level that I did not know existed. I want to take a moment to mention that we do appreciate all of the support, please understand that when our son comes home that we are under strict regulations to not have visitors. It is the hite of the flu/H1N1/RSV season which would all be detrimental to Trevs health if he was exposed to one of these viruses. I will continue to update blog and be sure to keep everyone informed. THANK YOU ALL! May God bless your lives, as you have ours.

SICK TREV

2009-11-08T12:23:00.000-08:00

Trev is currently 5 lbs. 14 oz. He is still growing very fast. Jannell & I are having a pretty tough time right now. Trev is getting sicker and sicker every day and it is difficult for us to see him this way. Our patience has grown short, we talked the NICU into running a blood test on Trev Friday the 6th. He was scheduled to receive the test on Monday the 8th, but Jannell and I had to know what was going on with his blood. It is so difficult, every test that they run with his blood they have to take about a 1/2 oz. of blood. When he is already having problems producing blood it is hard on him to lose any blood at all. They pricked his heel on Friday night to fill two small vials of blood as I held his hands, I could see in his eyes that he was scared, but that he found comfort in me talking to him and holding his hands as they drew his blood. I will never forget how his face looked that evening while I was holding his hand thru this test. The results came back as expected, his Hematocrit level has dropped to 24 from 27 he is getting more anemic and is not producing RBC's. We are very concerned for him, he is very pale, lethargic and starting to de sat. Monday morning they will run the the same tests to check his Crit levels. Please keep our family and Trev in your prayers, we are staying positive and we know he can get over this hurdle.

REESE,MOM,TREV

2009-11-05T21:53:00.000-08:00

My four-year-old little girl Reese is so excited for Trev to come home. Jannell and I have found her in her play room numerous times playing with babies and wrapping cords and cables around her play dolls pretending that she is taking care of Trev. She wants to see and hold him so much, it is very difficult for us as parents knowing that we cannot let our little girl see her little brother inside the NICU. Reese has already moved her car seat all the way to the back of our 3rd row seat in our SUV because she tells us “Trev is coming home soon and he is going to sit where I sat.”
Tonight as I put my little Reese to bed we talked about Trev. I told her how lucky that we are to have Trev in our family and then I told her that Trev is so brave! She responded with “even braver than me”? I said to her Reese Trev is even braver than dad. I told her that Trev is braver than I will ever be, he has been on this earth for 62 days and he has fought hard for his life each and every single day. I told her that we will live our entire life and never fight as hard as Trev has to live on this earth. It is amazing how much I have learned from I tiny baby that has more strength and courage in 1 oz. of his total body of 2 lbs. 13 oz. which is the weight he was born at than I have in my entire body. What a blessing this has been for me to see what is important in this life and to be so proud of a son that has worked so hard for each and every breath that he takes. I have gained so much strength from my wife, I had no idea that my wife was built with the determination, strength, love and character that I did not know was possible for a human being to possess! She is so beautiful and honestly the best wife and mother that a man could ever even dream of having. We cry together, we laugh together, we are proud together. She never fails to pick me up and keep me on my feet thru this entire trial. She is beautiful and so caring of all of our families needs. I do not have the strength to go thru this and if it were not for the strength of my wife I would not make it thru this test. I love you Jannell thru to my core!!
I told my daughter tonight in her bed that Trev is going to be very special in this life and is going to accomplish amazing things. You do not go thru something like this and pull thru the way he has, unless you are special. I then followed to tell her that I believe that God sent him to us for a reason, and that being Trevs big sister makes her special. She asked me why? I told her because Heavenly Father picked our family special to have Trev and that he prepared our family with you first,” Because Heavenly Father would only give a baby like Trev to a family that had something special. She asked me” what is special about us daddy? I said to her “you are special Reese, and Heavenly Father sent you to us special because Trev needs a special big sister to watch over him as he grows up and Trev and mommy and daddy are so lucky to have you and Drake in our family”. “Trev is very lucky to have a special sister and brother that were hand picked to take care of him.” I want my entire family to know that I AM A LUCKY MAN and I love you all so much!

The Dad

ROP EYE TEST SUCCESS!!

2009-11-05T21:29:00.000-08:00

Trev currently weighs 5 lbs. 14 oz. he is 35 weeks 6 days gestation and he has been at the hospital for 62 days now. He is eating so well and continues to grow every day. He is still a sick little boy and has not yet produced red blood cells. It is very hard for us to see him because his skin is so pale from being Anemic. The great news is that his little body is not symptomatic from his Anemia. If he was in dire need of another blood transfusion he would be loosing weight, de sating, not eating well, and up and down on his oxygen needs. He is stable and continues to make progress, they will be performing a test on his blood and liver on Monday to give him a full test to see if there is some underlying issue(s) as to why he is not producing RBCs. For the time being his body needs to continue to fight to try and produce RBCs on its own. You should see him light up when his mom comes into his room, he loves her so much! We received absolutely wonderful news from Trevs eye test on Wednesday. His eyes have developed about 98% and he is showing no signs of complications from ROP. This is a HUGE relief off of our shoulders as this has been weighing very heavy on our minds. (ROP is a condition where in severe cases the blood vessel development of the eye can detach the retina causing complete blindness.) Jannell called to tell me the results after his eye test and I did not believe her, she had to tell me three times, then we both starting crying.. Trev is such a stud and he is doing very well. The ability for Trevs little body to produce RBCs is the last big hurdle and we know he can do it! We love you Trev.

BATH TIME

2009-11-03T22:23:00.000-08:00

Trev seems to love his baths as long as the water is very warm. We love to give him a bath and feed him right after, he always seems to eat so well after his baths. Trev is still not producing Red Blood Cells, the NICU sent a blood smear test to Dr. Hayish at Primarys. He stated that Trevs body is capable of producing red blood cells on its own, but the virus is still overtaking his bone marrow and his RBC production. It is a waiting game, the scary part is that his Hematocrit levels continue to drop, they are keeping a close eye on him to make sure that he does not become too sick before they treat him with an additional blood transfusion. They want to stall on a blood transfusion as long as possible due the the risk of the procedure, and to avoid creating a more difficult situation for Trevs body that will continue to rely on the blood transfusions to produce his RBCs. Trevs body has to be pushed to see if it will kick into survival mode, right now his body is dependent on transfused RBCs to sustain his required counts. He must start producing on his own, but it is time that will determine when Trev will produce RBCs on his own. He was given an additional shot of Darbopoetin to see if this dose will kick-start his production of RBCs. (This is his 3rd dose of the medication.) Jannell and I are very concerned and worried about this situation, we are hoping to see some progress very soon.

BOTTLE FEEDING

2009-11-03T22:18:00.001-08:00

Trev is taking a bottle incredibly well! Tonight he finished his entire bottle of 50ML in 15 minutes! To our knowledge that is the most that he has ever ate at one time. Keep going little stud!!!

TREV AND MOM

2009-11-03T18:43:00.000-08:00

Trev is now 5 lbs 10 oz. today. He is doing pretty well, they will be performing Trevs eye test again tomorrow to see the current condition of the ROP that he has developed in his eyes. Tomorrow is a HUGE day for Trev and we are praying for the best outcome possible. Trev has graduated to level 2 feeding and continues to eat very well. He is currently receiving 43ML every 3 hours when he is not breast feeding or taking a bottle.

I LOVE MOM

2009-10-31T11:54:00.001-07:00

Trev is doing pretty well, he currently weighs 5 lbs. 6 oz. and is eating like a champion. He is now taking a bottle and he is able to eat the entire thing. We are so proud of him, He loves when Jannell holds him and burps him in between feedings. (As you can see in the picture) Trev has all the doctors stumped, they cannot figure out why he is not producing any Red Blood Cells. It is a scary situation for Jannell and I, they will be performing some further blood tests on Sunday. The good news is that Trev will be seen by a world renowned Hematologist on Monday. Dr. Ishee is from Jordan, he has treated babies all over the world. We are hoping that he is the answer to our prayers and can provide treatment for little Trev. It is an extremely eerie feeling of complete helplessness when the head Neonatologist tells you that he has no idea why our son is not producing red blood cells and that he has never seen a baby with these rare symptoms before.

HURDLES

2009-10-27T22:20:00.001-07:00

Trevs time in the NICU has had its ups and downs and all around.(So have Mom & Dad) He has overcome many hurdles as he continues to fight and get strong. He has overcome his Oscillator, Ventilator, PDA (heart condition), Chronic Lung Disease, Phenomena, 5 Blood Transfusions, Jaundice, and so much more. He has some huge hurdles to clear again. Trev has developed a mild case of ROP (Retinopathy of Prematurity). ROP is abnormal vessels that grow over the tissues of the retina. The retina is the light detecting layer of cells at the back of the eye that allows us to see. The good news is that he has the most mild form of the condition and hopefully the veins will regress and his eyes will be perfectly healthy. ROP is caused by pre maturity, blood transfusions and the force of oxygen support into his body. In the most severe cases, ROP can detach the Retina from the eye causing complete blindness. There are treatments for the condition that require laser eye surgery, but we are hoping that his eyes will continue to mature and he will get passed this condition. The doctors are giving us positive response that he will overcome this with maturity. Trev will have an eye exam next week to determine the changes that his condition has made over a two week period. Trev is also not producing Red Blood cells on his own, he still is anemic which is a condition where the number of healthy red blood cells (RBCs) in the blood is lower than normal. RBCs transport oxygen throughout the body, so a shortage of these cells can be serious. He has had five blood transfusions due to his Anemia, his Hematocrit levels (which is the measurement of the red blood cells in the body) is at 32%, idealy the physicians like this number to be above 40%. The good news is that his RBC count is not decreasing, the bad news is that it is not increasing. They have given him two shots of Darbepoetin to try and stimulate the bone marrow to produce RBC's. So far this has not been successful. We are hoping with maturity and time for the Darbepoetin to stimulate his bone marrow he will start to produce on his own. Trev is in many of our family and friends prayers as these are two large hurdles for him to clear. We are optimistic about the outcome and are praying for his health. WE LOVE YOU TREV...

DRESSED AND COZY

2009-10-27T22:18:00.001-07:00

Trev just taking it easy after his first bath. He looked so cute all clean..

SWADDLE BATH WITH DAD

2009-10-27T22:12:00.000-07:00

Finally we were able to give our son his first bath after 50 days! Dad has been looking forward to this day for a long time. It has turned into a tradition in our family for dad to give our kids there first bath. He loved his swaddle bath at first, but I believe that we waited too long and his water was not warm enough. It was an amazing experience to give him a bath, we will be bathing him about every other day.

TREV, MOM & A WHOLE LOT OF PATIENCE

2009-10-27T21:59:00.000-07:00

It continues to be emotionally draining beyond words to have our son in the hospital we are now at 53 days. Now that he is getting older and more stable we want and need to spend even MORE time with him. It is a full time job to fit the entire family into the equation. He loves his mom so much and he knows her very well. He is now to the point that he cries when we put him down, it is so hard to leave him as we wish for this all to come to an end. We are beyond ready to bring our boy home. However I never thought I would see light at the end of the tunnel, but I believe that we are getting closer everyday and we are finally starting to see it.

BREAST FEEDING!!

2009-10-27T21:46:00.000-07:00

Trev has been attempting breast feeding for about 5 days now once a shift. A shift is a 12 hour period and a preemie starts out at Stage 1 feeding, which is either a bottle or breast feeding once a shift (he is fed 4 times a shift) then based on his tolerance that will increase. He still has a feeding tube for the other feedings. The lactation specialists are absolutely thrilled with the ability of this little 34 weeker to be able to latch, swallow and breathe as he is supposed to while feeding. He is ahead of the game and making some huge progress. We we literally told he is THE BEST 34 week gestation baby "nurser" they have ever seen. Even still it isn't easy for him at times, Trev will store the milk for too long in his mouth and swallow a large amount. He chokes, turns blue and scares mom and dad to death as we watch his heart rate, and respiratory rate plummet! It is fairly common for preemies to choke or "forget" to breath as this is completely new for him and he is still getting the hang of it. He also at times is literally too tired to wake up and nurse or gets too tired in the middle of nursing and wears out. This is a very exciting step but can be an extremely slow process with many ups and downs. Trev is also starting to pass Jannell up with his feeding needs and we've had to start supplementing with formula. Jannell has done so well, she sacrifices so much of her time pumping to produce milk for Trev. My beautiful wife has been able to keep up with Trev for 2 months! Far beyond expectations especially with her history and doctors and nurses predictions in situations like this. There is a natural hormone released when you are around your baby that will produce breast milk, that is difficult to release when your baby is at the hospital and not home. Considering the facts, I am so proud of my wife and what she has been able to provide for our little boy, I love you Jannell...

OXYGEN AND LUNG NEEDS

2009-10-27T21:36:00.000-07:00

It is such a relief to see the improvement Trevs lungs have made. He started on a Ventilator for 23 days, CPAP for a week, high flow nasal cannula set at 4 liters per minute. From this point he was not making any progress, they started him on Nitric Oxide, the treatment of Nitric is designed to remodel his lungs that have suffered damage due to the amount of oxygen needs Trev was set on. The Nitric is a blessing, he has went from 4 liters of oxygen per minute and a Nitric setting of 20. He is now at 1 liter per minute on a normal cannula! His Nitric setting is now at 5 as they continue to ween him off both his nitric and his oxygen needs. We are so pleased with the progress of his lungs, his lung situation has been a HUGE hurdle for him to clear, he is well on his way to being weened entirely off of oxygen.

PAST TO PRESENT

2009-10-27T21:25:00.000-07:00

It is amazing to compare Trev from the day he was born to the present day. Trev is 53 days old, he is 34 weeks 4 days gestation. He has gained a ton a weight and has made some extraordinary progress! He currently weighs 5lbs. 3 oz. We cannot believe how big he is getting. He is now taking 40ML for his feeds every 3 hours.

TREV IN HIS CRIB

2009-10-19T19:01:00.000-07:00

The Nurse Practitioner mentioned to us that as soon as his oxgen flow is down to 3 liters per minute and is 34 weeks gestation, they will allow us to try and give little Trev a bottle. We are looking forward to the day that he can be bottle fed, which is one step closer to the day little Trev will be able to come home with us.

DADS WEDDING RING

2009-10-19T18:50:00.000-07:00

DAD AND TREV

2009-10-19T18:48:00.000-07:00

This is the best part of my day, everyday!

LOVE THIS KID

2009-10-19T18:34:00.000-07:00

Trev is 45 days old today. He is currently 33 weeks gestation and is 4 pounds 12 oz.! He is 17 1/2 inches long and is doing very well. He is eating 37 ML every 3 hours and they switched his feeding tube thru his nose instead of thru his mouth now that he is on a high flow nasal cannula. They turned Trevs oxygen down to 3 1/2 liters per minute today. The Nitric Oxide they are giving him seems to be doing the trick. It allows his lungs to heal so they can continue to slowly ween him off of his oxygen needs. They will performing an eye test this week to test his vision and his eye development. He is doing so well and seems to be extremely alert, he absolutely loves kangaroo care which has been proven and studied to increase the growth of pre mature babies. He is a beautiful little boy and is getting cuter every single day. It is very difficult for us to leave him at the hospital now because he is doing so well and we are getting comfortable taking care of him. He is a very well mannered baby and he seems to be winning over the hearts of all the nurses at the NICU. He is a charming baby and is as cute as can be, He is going to be a special person some day. Jannell and I are so excited and feel very blessed to be able to raise him and watch him grow. He has jumped some HUGE hurdles and he is a brave little FIGHTER!

TREV WITH HICCUPS

2009-10-19T18:20:00.000-07:00

I was able to spend some time with Trev and hold him for Kangaroo Care. He actually had the hiccups which was cute as can be. Jannell can remember him in her belly having hiccups all the time. It is interesting to see him move in a way outside of the womb that is the exact way Jannell and I could see him moving while inside her stomach.

2009-10-12T20:15:00.001-07:00

Baby Myspace Graphics

Myspace Layouts

2009-10-12T19:15:00.001-07:00

OLDER BROTHER

2009-10-12T19:05:00.000-07:00

Little Drake is such a stud! He loved the water that he was drinking out of the syringe. It was all over though once he eyeballed the pink frosted cookie that was waiting for him at the end. Needless to say he got his wish and was given the cookie about half way thru the class.

FUTURE NICU NURSE???

2009-10-12T19:03:00.000-07:00

MORE CARE

2009-10-12T18:57:00.000-07:00

Taking Notes!

IM READY!

2009-10-12T18:55:00.000-07:00

Reese was able to try on the isolation gowns that are worn while performing Trevs cares.

Diaper Change

2009-10-12T18:53:00.000-07:00

I wonder if she is excited to help mom with Trev??

SIBLING CARE

2009-10-12T18:46:00.001-07:00

The hospital offers a sibling class for kids to help them to understand what all those tubes and stickers that little brother has all over his body are doing. In this picture Reese is shown how Trev eats. This was a very fun day.

2009-10-12T18:30:00.000-07:00

Trev is doing pretty well. He now weighs 1965 grams which is 4 pounds 6 oz. Since we cannot take children into the NICU Reese and Drake have not been able to see little Trev yet. I was determined to let them see their little brother, across the way from Trevs window is the cafeteria. Reese,Drake and I headed over to the deck of the cafeteria so we were looking back at Trevs window off of the balcony. I brought a pair of binoculars, called Jannell in the NICU and told her to hold Trev up by the window. My little Reese had the binoculars focused in right on the window, she was able to see Trev for the first time and she was so excited! We also let little Drake sneak a peak thru the binoculars. To say the least, Reese thinks that binoculars are about the neatest thing on the planet. I am so happy we found a way for them to see their little brother.
Trev seems to be stuck on his oxygen setting at 4 liters per minute. He is not making much progress with his lungs, they have decided to put Trev on Nitric Oxide which will help his lungs to develop quicker. The Nitric is given thru his nasal cannula for a period of 1 month. We are hoping this will make a huge difference and we will continue to see our Trev grow. Nitric is EXTREMELY expensive and is not very often used because of the cost, even though it is very effective. (About $90,000!)

UNCLE KASEY

2009-10-12T18:28:00.000-07:00

Uncle Kasey stopped by to see his favorite nephew.

2009-10-09T23:37:00.000-07:00

Trevs next step is to take a bottle. He still has a small feeding tube down his throat. We can do this as soon as his oxygen needs come down a bit more. Hopefully 1-2 weeks. We went to a Parent Support class the other night in regard to his speech development which amazingly begins with and is directly related to how well his first feedings go. Babies, fetus' actually, learn to suck at 12 weeks gestation but the ability to suck AND swallow doesn't happen until closer to 34-36 weeks gestation, that is why at times even full term babies have a hard time eating at first, let alone a preemie. How a baby learns to suck and swallow determines how well he forms his words and speech development later! Mother nature is AMAZING! Yet hard to mimic unfortunately. Preemies are also so used to being poked and prodded so much they have to learn 'good' stimulation when it comes to their mouths. Up until now, although it keeps them alive, nothing but tubes, sticks and medicines have been shoved into their mouths which can cause a negative reaction to anything near their mouths. Trev does suck on a binki now and then and thats a good sign he has a good sucking reflex. The other tricky thing for a preemie is remembering to breath while eating! So a slow but exciting step is coming up as Trev works his way home to us.

COMFORT AT LAST

2009-10-09T23:29:00.000-07:00

You can just see the difference in Trevs comfort. Now that he does not have a CPAP on his little face he can just relax in his new room which has a window! The Eye doctor came in yesterday to check Trevs eyes. He dilated them to view the retina. His eyes are still too pre mature to test his vision, but his retina is attached which is a great sign. Sometimes side effects of oxygen to pre mature babies are eye complications, but so far so good for our Trevy.

TREVS NURSES

2009-10-09T23:16:00.000-07:00

On the right is Lisa, on the left is Gorgi. Two of the many amazing people that work at IMC. Lisa is a charge nurse that has always been so caring of Trevs and our needs. She ALWAYS takes the extra time to talk to my wife to make her comfortable. She is one of our Primary nurses and she is an incredibly comforting AMAZING person. Gorgi is one of Trevs Respiratory Therapist, she is a very kind, loving person. She always comes in and talks to Trev every time we are in with him. She will go out of her way to take pictures of our little guy and made scrapbook pages for us of him. Trev loves her! We are extremely grateful for BOTH of them among many others. Trevs a 'big' boy now and moved into a different area of the NICU. These two nurses, among others, skills and care are needed for babies that are extremely sick. They are absolutely incredible at what they do. It is bittersweet not to see them as much anymore, but we know the reason that we do not see them is because little Trev is making so much progress! Jill, JANET, Robert, Dave, Karen, Becky, Michelle, Leanne, Stacey, Lynn, Janie, Hillary, Amy, Connie, Bonnie (and many more) are also some of our FAVORITE nurses and respiratory therapists to whom we are forever indebted and think the WORLD of to say the least!

GRADUATION DAY

2009-10-09T23:09:00.000-07:00

Trev is officially in a normal crib! Stacie who is on the right is one of Trevs primary nurses. You can tell that she cares deeply for our little man and we are extremely grateful for her. Now that he is breathing on his own they have moved him into another pod of the hospital. It is bittersweet, we have grown to love all the staff in the D Pod. We will miss seeing them on a daily basis. They are the reason that our son is alive today! We could never thank them enough, they are such amazing people.

TAKING IT EASY

2009-10-09T23:07:00.001-07:00

Trev is just chillin with his dad. Look at the size of my hand compared to his body!

MOM TAKING TEMPERATURE

2009-10-09T22:58:00.000-07:00

Here is a picture of mom taking Trevs temperature. He is doing so well keeping his temperature consistent. His temperature is taken every three hours at cares to assure that he is sustaining his own body heat. It is important that temperature is closely watched. If he is having problems sustaining his own body temperature he will burn up much needed calories that help him to grow.

DRESSED IN CLOTHES

2009-10-09T22:50:00.000-07:00

Trev is now 35 days old. (31 weeks 6 days) as you can see he has made some HUGE progress. He is able to wear clothes now that he can sustain his own body temperature. He is on a high flow nasal cannula, it is set at 4 liters per minute. We are so happy to see him off of the CPAP, which he was on for 7 days. Trev is getting so big and strong, he currently weighs 1830 grams which is 4 pounds 2 oz. His feedings are up to 35 ML every 3 hours.

Good Morning Trev

2009-10-09T20:59:00.000-07:00

Nasal IMV

2009-10-04T19:52:00.000-07:00

Trev was on this IMV nasal cannula which is shown in these pictures. It was so great to see his face, but he kept pulling the prongs out of his nose by moving around. These prongs were 2 inches long! The Respiratory Therapist was concerned that it would cause trauma to the back of his nasal passage so they changed him to the bubble CPAP. Jannell was able to hold Trev today for an hour. He just laid in her arms and slept so comfortably, Jannell is an amazing mom.

WIDE AWAKE

2009-10-04T19:39:00.001-07:00

Trev, is doing very well, he is now on a Bubble CPAP with zero ventilator breaths for assistance! He just has a constant air flow going thru the cannula in his nose. We are very proud of our little boy and the progress that he has made. Trev now weighs 1680 Grams (3 pnds 12 oz.) He has grown so much and continues to grow every single day. Jannell and I stopped over at the hospital on sunday to see him, He just stared at us the entire time. Anytime that Jannell and I would talk to him he would open his eyes and follow us the best he could with his eyes. A pre mature babies eye muscles are still not fully developed so it is difficult for him to focus for a long period of time. They dropped his oxygen PEEP setting to 6 today down from 7 as they are continuing the weening process one step at a time as his lungs develop strength every day. His next stage will be the high flow nasal cannula and we are looking forward to this day. The only medication that they are giving Trev is Theothln, which opens up his airways to help him to breathe.

GRADUATION!!!

2009-09-30T21:11:00.001-07:00

Trev had his ventilator tube removed on September 28th at 3:00PM! He is doing very well, we had a pretty good scare on Tuesday morning when we were informed that Trev was having a hard time breathing on his new CPAP. This is the 3rd time that he has been ext abated, he has failed every time and he has had to be placed back on his ventilator. He has now been on his CPAP for over 48 hours, this is a HUGE relief to mom and dad because of the Chronic Lung Disease that his ventilator was causing to his lungs. The CPAP is producing oxygen directly to his nose that is sealed air tight as you can see in the picture. All though it looks very uncomfortable this is a huge step for Trev in the right direction. His oxygen settings are high, but they are stable and we are hoping to see them decrease in the near future. He has a hard time keeping his mouth closed which allows oxygen to escape thru his mouth. They have now place a chin strap around his chin to keep his mouth closed. It is amazing to watch Jannell when she gives Trev a newborn binkie (Which is half the size of his head) He loves it! All of his oxygen settings decrease dramatically every time mom tends to his needs. It is the most beautiful, natural, amazing thing to see. He loves his mom so much. The nurse told me today that he is becoming extremely close to be able to sustain his own body temperature and to not require humidity in his issolette. In a few more days they should be able to take the top off of his issolette and dress him in some preemie clothes. It is amazing to see the progress that Trev has made from the day that he was born. The nurses and medical staff is so amazing. I cannot say enough how grateful that we are for the NICU and the staff here at IMC.

SWEET BOY

2009-09-30T21:05:00.000-07:00

Trev is getting big, his feedings are up to 28ML every 3 hours and he weighs 3 pnds 5 oz.! He sure is a cute little boy and he is getting very strong. Doctor performed another Echocardiogram on his heart and his PDA is still open, but it is small. At this time they are not concerned enough to treat his open PDA, but they will keep an eye on his heart condition.

THEN AND NOW

2009-09-27T15:57:00.000-07:00

The pictures speak for themselves! What a difference since the day he was born compared to now (23 days later) Picture on the right was the day he was born weighing 2 lbs. 12 oz. and a very sick boy. Picture on the left is Trev today, 3 lbs. 3oz. And for the most part getting healthier every day. It is uplifting to see his progress side by side.

GETTING BIGGER & STRONGER

2009-09-27T15:32:00.000-07:00

Trev, continues to grow and he weighs a whopping 3 pnds. 3oz. (1470 grams) We can actually see his body filling out. On saturday morning, I brought my mom with me to see Trev. He just layed there and stared at me while I held his hand and talked to him. It was an amazing experience, I was trying not to cry the entire time. He looked so peaceful even though he has tubes and IV's all over his little body. He feeds are now up to 23ML every 3 hrs. His oxygen PIP setting is now down to 15 from 18 and he is handling it very well. They are finishing up his antibiotics in the next two days. They will be giving Trev a chest x-ray and a Echocardiogram on Monday. The Echocardiogram will be testing the open PDA that he has in his heart which continues to close on its own. The last Echo showed that his PDA was small and closing, which is great success for Trev knowing that it was wide open when he was born. Trev has Pneumonia in his lungs, this is the main reason why it has been so difficult to ex tabate little Trev from his ventialtor. He has so much mucus in his lungs that he struggles to breathe freely on his own, the other difficult part of his situation is that his ventilator tube that is down his throat is causing so many secretions that it is clogging his airway. The NICU is now debating whether to give Trev a steroid to open his airways to give him another shot to ex tabate him. There are possible risks with giving a steroid that causes low blood sugar and increased heart rate. It feels like time is in slow motion and the time that he has been on his ventilator feels like will never come to and end. We are praying that this week they can ex tabate him and we can get over this hurdle.
He is doing so well with his feeds, he grows on average 20-30 grams a day! On friday Jannell and I were in visiting him and he was getting up on his knees and elbows like he was crawling! He is getting stronger and stronger every day. Just need to get past this Pneumonia and ventilator hurdle so he can continue to make forward progress.

ISOLATION

2009-09-27T15:11:00.000-07:00

The Health and Disease control informed the NICU that Trev must now be isolated from other babies due to having "fifth disease". Which is silly since he has already been in the NICU for 3 weeks and it is impossible for him to be contagious. In a way we almost enjoy it! The nurses are now required to wear masks,gloves,and gowns while treating him. Which in our mind is double protection against possible viruses that are transfered around in the NICU. We both had a really hard time with this at first, but we have now realized the benefits that it will bring to our son .He will be in Isolation until the Health and Disease control has the opportunity to test his blood samples that have already been sent off for testing. For the time being, in order for us to hold our son or enter his room we are required to suit up before entering his room and also to hold him. The other interesting fact is that Jannell obviously passed the virus to him while he was in her womb. That is why we are in here in the first place. Which makes you ask yourself the question, "Why would Jannell need to suit up to handle him, Trev contracted the virus in her body? It has been very interesting to realize how rare fifth disease truly is and that the Physicians actually come to us for education on the virus. I feel the Health & Disease control is jumping to the conclusion of "better safe than sorry" because they too are unfamiliar with how the virus works. We are just happy that our little boy continues to show signs improvement, and we are willing to do whatever it takes that is best for our baby and everyone involved in the NICU. We are so thankful and blessed to have one of the best physician staffs and facilities in the world treat our Trev.

RISE AND SHINE BUDDY!

2009-09-24T16:14:00.001-07:00

Trev is starting to develop his little personality, when Jannell comes in the room and talks to him he always opens his eyes. He is already a mamas boy and we can't wait to spoil him. Trev PIP settings were reduced from 20 to 18 today, this is great progress. It means that his ventilator will now be giving him 18 breaths per minute instead of 20. The rest he will have to due on his own which will continue to strengthen his lungs. They will continue to ween him off his ventilator, its a slow process, but we are praying that it will be effective this time. Trevs feedings have increased to 23 ML of milk 3 times per day which is up from 22ML. KEEP GROWING BUDDY! The practitioner stated today that he handles his feedings better than they could ever hope for, to the point that he is actually surprising the NICU staff.
Our "pod" in the NICU which is Trevs room has a sliding glass foggy window in the wall. In the other room on the other side of the window is the C section surgery procedure room. Today my wife listened to twins born, you cannot see thru the window, but you can hear everything! It is bitter-sweet to hear people have their babies and hear their healthy babies cry! We did not have the opportunity to enjoy the birth of our son at times it is hard to listen to the joy of parents experience on the other side of the wall. It seems like we hear 3-4 babies born per week. Jannell and I have been attending a parents class every Wednesday evening with volunteer parents that share their experiences having their babies in the NICU. It is comforting communicating with people who can relate to our experience and our emotions. What a blessing it is to have Trev at a time when medical technology is so advanced, it is the sole reason that our son has a shot at life. IMC hospital is amazing, it has the best NICU in the western United States. All though we cry every day about our sons situation, we feel extremely blessed to have our son being treated by one of the top NICU's in the world!

KANGAROO TIME FOR DAD

2009-09-23T23:11:00.000-07:00

This was actually on Friday the 18th. This was my first experience holding my son! I love him so much, it felt like I was holding a baby kitten, he is so small. The nurse practitioner sat me down today and stated to me that now that things have calmed down a little bit she wants to talk to me. She stated to me that she was the first doctor to work on Trev when he was born, she told me that he was extremely sick and the color of snow when she received him. She stated to me that she felt that he was too sick and did not have a chance to survive! I was a little taken back when she told me that she has been a nurse practitioner for a long time and she said that Trevs survival is TRULY a miracle! He is doing good and we are so proud of him. What a blessing it is for us to have him in our life, I know someone was looking out for him to be living today.

BLOOD TRANSFUSION SUCCESS!

2009-09-23T22:01:00.000-07:00

Trev received a blood transfusion on Tuesday, thru an IV with o- negative blood they transfused 26 ML into his body. His Hematocrit levels were at 27%, (Hematocrit is a measurement and count of red blood cells in the blood) His new count is at 43% which is fantastic! Never thought that I would be so thankful for people who donate blood. Trev also has an infection in his lungs that is more than likely caused by the ventilator tube in his throat. The practitioner stated to me :"The tube in his throat is a foreign object, even though it is his life support so he can breathe now, his body is fighting and using its defense to get it out. You can compare it to a sliver that has been in your hand for over a week, it will become irritated, fester and become infected until it is removed". Trevs infection in his lungs is at a level 1 on a scale from 1-5. (1 being the least severe) He is receiving antibiotics called Cefotaxime every 12 hours for 7 days. He is also receiving Gentamicin every 36 hours.
Trev has Chronic Lung Disease (CLD) which is almost a given for babies born at 26 weeks. CLD is scarring in his lungs caused by his ventilator that does not allow his delicate little lungs to heal. This means that the very life-saving assistance that he is receiving from his ventilator has damaged his lungs and impaired their natural healing process. More than likely Trev will not have any "Long Term Effects" from this disease, but it is a long drawn out process that extends the time frame that Trev must be on his ventilator. They will start decreasing his PIP settings on his ventilator by 2 a day until he is down to around 12, he must be stable at 12. PIP is the number of breaths per minute that Trev receives for assistance, right now he is at 20. He must also decrease his PEEP setting of 6 down to 4, PEEP is constant oxygen that keeps his lungs inflated. Trev is still very small, they will start to force him to rely on his lungs more heavily in the days to come which will build up his strength. Once he reaches these goals and with some assistance of a mild steroid they will try to ext abate Trev from his ventilator.HE IS ALMOST 3 POUNDS! Which is great, he weighs 1320 grams which is about 2 lbs 15 oz. He is definitely filling out.

OUR SWEET FUZZY BOY!!

2009-09-23T21:51:00.000-07:00

There is nothing cuter than the little blonde fuzzy hair all over Trevs body! Most preemies have hair all over their body.

Little Trev is SICK

2009-09-21T20:12:00.000-07:00

Today has not been the best of days for Trev or mom and dad. They found out that he has a bacteria growing in his lungs. They will be treating his infection with two antibiotics. He received his first dose of Gentamicin today, he will receive the second dose in 36 hours. They will also be treating his infection with an antibiotic called Cefotaxime which he will receive for 5-7 days every 12 hours. The Nurse practitioner stated to me today that his infection is mild and they caught it early on which is good. She also stated that on a scale of 1-5 the infection is at a 1 as of now. Trev also received another blood transfusion today, his Hematocrit levels were at 27% they like this percentage to be over 36%. they are measuring the amount of "packed" red blood cells in his little body. They transfused 13ml of blood early this afternoon, they will transfuse the remaining 13ml at 11:30PM tonight. From that point, they will test his Hematocrit levels at 5:00PM tomorrow to see how he faired out. Poor little guy has a ton going on today. We are praying for him and we love him!

2009-09-20T18:22:00.000-07:00

Handing the little stud over to mom for "Kangaroo Care"..

2009-09-20T18:19:00.000-07:00

Kangaroo Care... I love Trevs little back!

2009-09-20T18:17:00.000-07:00

Trev kept opening his eyes today when Jannell would talk to him.

2009-09-20T18:15:00.000-07:00

Setting up X-Ray machine to view the progress of his lungs..

2009-09-20T18:09:00.000-07:00

Trev is doing well today, he is eating 22 ML of a mixture of breast milk and high calorie fortified liquid every 3 hours. His heart rate is up to 185-195 BPM today due to the medication they gave him to clear his lungs. They changed the settings on Trevs ventilator, he know has to work harder to breathe which is a good for the development and strength of his lungs. He was awake almost the entire time we where there this evening with his eyes wide open. His ventilator gives him 20 breathes of air per minute and no more. Yesterday, his ventilator was set to aid him with each breath that he would take, we are happy to see his progess on his way to be able to breathe without the ventilator.

2009-09-20T11:12:00.000-07:00

He is like his dad already! He loves to sleep on his stomach. Trev weighs 1260 grams today which is 2 lbs. 13 oz. Which is up to his original birth weight! His feedings are up to 22 mg every 3 hours which is 8 times per day, he started at 2mg. He is handling eating very well, they feed him Jannells breast milk thru his feeding tube. They removed his PICC line yesterday and it went very well. Trev is having a hard time weening off of his ventilator, but we are hoping by next Wednesday they will give it a shot and they can keep him on the CPAP. His little lungs are just too pre mature to handle working on their own, babies lungs are fully developed usually at 36 weeks gestation. Trev was born at 26 weeks, since he is no longer breathing amniotic fluid he is required to use his pre mature lungs to breathe. It is hard on him, but he is getting stronger every day! Trev has fluid in his lungs which is making it difficult for the Respiratory Therapists to ween him off the ventilator. They are giving him 3 doses of medication and a steroid to try and clear up his lungs so they can attempt to ext-abate him from the ventilator.

2009-09-20T11:02:00.000-07:00

There is nothing more amazing than to see my beautiful wife hold our little boy. It take 20 minutes for them to prepare Trev for us to hold him, they have to detach all of his IV's, monitors, Ventilator tubes etc. to remove him from his Issolette. Pre Mature babies are not capable of regulating their own body temperature, so Jannell holds him "skin to skin" her body temperature regulates Trevs. This is called "Kangaroo Care" Trev already knows his moms voice, every time Jannell talks to him he always calms down. She is such an incredible mom. Can you tell that this little boy is going to be spoiled or what?
WE LOVE YOU TREV...

2009-09-20T10:57:00.000-07:00

Here is a picture of his cute little leg and foot. He is already showing signs of a Webb baby, he hates to be confined and he loves to stretch his little legs.

2009-09-20T09:01:00.000-07:00

Here is a comparison of dads thumb to Trevs foot.

2009-09-19T22:40:00.000-07:00

He is wearing a shield over his eyes to protect them from the Bililights. Trev had Jaundice which is now resolved and he is doing well. He weighed 1260 grams when he was born and the nurses told us that he will lose weight which is caused by all the fluids that they will be pumping into his little body. I gave Trev a blessing and 2 of my fingers fit over his entire head which is about the size of an orange.

2009-09-19T22:09:00.000-07:00

Trev is on a ventilator to help him breathe. He has a tube down his throat that provides him with oxygen. He has IV's thru his belly button that go directly to his to his stomach to provide him with his nutrition and his medicine. He also has an IV in his are which they are giving him addition blood transfusions thru to boost his red blood cell levels to correct his anemia. Trev also has a IV into a vein in his head.

2009-09-19T21:56:00.000-07:00

Trev Spencer Webb was born on September 4Th, 2009. He was 26 Weeks and 6 days gestation. He weighed 2 lbs. 13 oz. and was 13 3/4" inches long. Trev was a sick little baby due to being exposed to a virus called "Fifth Disease".

At the end of August we were fishing in the High Uintah Mountains in Utah. Our other little boy Drake, who is 2 had a rash on his cheeks. Both Jannell and I thought it was a sunburn from our time outside in the mountains. We noticed a slight rash on his shoulders as well and decided it would be best to take him to a Pediatrician just to be safe. Jannell walked in to Pediatricians office with Drake, the Pediatrician told Jannell that he has "Fifth Disease". We had never heard of the virus and we were surprised, it is a virus that is passed like a cold which creates a rash in children, and cold like symptoms which last about 1-2 weeks and then go away.
Drakes Pediatrician said that it is a virus that just needs to run its course, but since Jannell was pregnant she needed to have her blood tested right away. If she passes the virus to the baby it could be harmful to his health. Sure enough the virus was passed to our baby Trev. (Which had a less than 1% chance to be passed to Trev) and he became very sick and required a blood transfusion while still in Jannells tummy. They place a needle inside of the umbilical chord to transfuse new blood, unfortunately this went wrong and caused a blood clot in Jannells umbilical chord. Trevs heart stopped beating and they rushed Jannell to labor and delivery for an emergency C section. They delivered Trev in 4 minutes (new hospital delivery record) and he has been in the NICU ever since fighting for his little life!