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.
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!
