Oh How It Amazes Me, You’re Changin’ With Every Blink…

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Today Alexandr has been home for four days. It’s been a huge adjustment from the NICU to home. All the rules and regulations of how and when he should eat, not being able to leave the house, even just to go do errands, like normal parents. I have to monitor him to make sure he’s okay, make sure he’s still keeping his temp, and for the first few days we were on a staunch feeding schedule, and while it might be lighter now, it’s still pretty staunch lol. It’s just not as complex as it was when we came home. Alex ate like crazy after we brought him home, he steadily progressed on his feedings with me at the hospital and continued the trend at home. He routinely takes 60ml bottles and even on his not-so-hungry feedings he’s taking at least 40ml. We went to the pediatrician on Friday to see how he’s progressed since he’s been home and make sure everything was good. Alex was 4lbs 10.5 ounces and 18 inches long when he was discharged from the NICU. At his pediatrician appointment, two days after his discharge, he was 4lbs 15 ounces, and 18 1/4 inches long. In TWO DAYS home with us he gained almost five ounces and a quarter of an inch! The pediatrician gave him a book, which apparently they do at every appointment for infants, so every time he goes he’ll get a new book to add to his library (super friggin cool), we were encouraged to start doing tummy time while he’s awake and reading to him as she said his awake times will be more prevalent in the coming days, as well as his alertness during those times. He was having some issues with reflux and gas, the doc gave some tips for now to help avoid it and it seems to be working well. The night before we went in to see her he had a spit episode that came almost solely out of his nose, scared the living hell out of me, and of course none of the aspirators we have are small enough to fit in his teeny tiny nose, so he just had to sneeze it out. She suggested I hold him upright for at least 15 mins after feedings to help eliminate that as a problem, I also decided that instead of using the, “sit the baby on their butt and rub and pat their back” burping method, to try my grandma’s old school tride and true method of, put baby head on shoulder and pat. It’s phenomenal and often times he burps before he gets to my shoulder. He hasn’t had a full reflux spit since starting the upright idea (i put him in the kangaroo care position for this). He’s been much happier, with good reason.

Having him home has been a great joy. Though mom is riddled with lack of sleep and isn’t probably eating as much as she should lol, it’s going very well. When he is fussy we enjoy mommy Alex time on the bed, he sleeps really well that way and it is just so serene somehow to look down at his little face while he’s sleeping. I don’t get much tv watching done with him laying there next to me lol. Since we got the go ahead to start tummy time with him mommy decided to plop him on the floor and read him the little red hen yesterday. He seemed to enjoy it, and shortly after being put on his tummy he decided he wanted to flip to his back, he almost made it and shocked me. Daddy thought perhaps it was a fluke as that’s not on the milestone list until 3-4 months (which would be at 5-6 months for Alex) so as excited as I was, I kind of wrote it off, until today, when he did this for about twenty minutes, for pretty much all of tummy time. So at three weeks old, he’s trying stuff he shouldn’t be dorking with for another four months-ish. Again, always in a damn hurry! lol I took some video, so enjoy my little crazy butt Alex being a bad ass!

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Better Than I Was, More Than I Am, All Of This Happened, By Takin’ Your Hand

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Something wonderful happened. After twenty four days in the neonatal intensive care unit, at almost 37 weeks gestational age, and three weeks old. Alexandr is finally home. It kind of started at the tail end of last week, particularly on Saturday. Alexandr pulled his feeding tube out of his nose, and they had told us that if he did that, because of how well he was eating, they would not put it back in, unless they ABSOLUTELY had to put it back in. He was also given his hep B vaccine, we were asked to bring in his car seat so it could be tested (they sit him in it and monitor him), and do a CPR review on Sunday. Sunday also brought the rest of his newborn things, his hearing screen, circumcision and the like. At that point it was just a waiting game, we had started getting things together to try and get the house in proper order. Of course Sunday night I got very little sleep and Daniel stayed up cleaning the carpets and such, and Monday morning we got the phone call that the neonatologist wanted us to come room in with him. For those who might not know, most parents when they have a child, are at the hospital and their newborn is in their room with them. We did not get that, rooming in accomplishes those things, they made sure we were feeding him properly, that he was able to gain weight overnight like he had been, that his temperature stayed good, and that he had no random medical issues arise. They wanted us to do this for two nights instead of one, only because his NG tube had been out for such a short period of time. We also had the opportunity to get his newborn photos taken by the photographers at the hospital. The room in went wonderful, of course we were both absolutely beat. By Wednesday morning we were both exhausted, we asked the NICU staff if they could take Alexandr for just a little while, we only asked that twice while there even though they offered much more. Daniel and I went for a walk at around three am, we talked and looked at the stars, and talked about how happy we were to hopefully take him home. Later that morning we walked to Burger King and had a bittersweet breakfast. It may have just been french toast sticks, but we both realized that for at least a while, it would be the last time it would just be the two of us. Now of course we are so happy he’s home, but there was a tinge of sad in that moment at least for me. Mostly because I know it’s going to take a lot of time before Alexandr is going to be like a full term baby. I’ll elaborate on that in a minute, but the road won’t be easy, for any of us. After getting all of his things together, taking pictures with the nurses, filling out discharge paperwork, and packing up, we got Alex in his carseat and it was on to the ride home. I’ve never been more of a nervous wreck. I swear it took four years for us to get home. When we made it home he was fast asleep. I swaddled him and put him in his crib for the first time (first picture). He likes sleeping in my lap too when he’s feeling fussy or dealing with reflux, (second picture), and trying to crush me with his tiny feet (third picture).

On to what I mentioned earlier, Alexandr is going to face things differently being premature the way he is. It will take him at least two years to catch up, if he does, to where he should be. I have high hopes for him, but because of this it takes much more to take care of him. Now for instance. There is a special way we have to mix his formula, which is a special kind to begin with, he has to eat every three hours weather or not he is asleep, we must wake him if he is. He has to eat a certain amount at a minimum to help him gain weight, and he should be doing that daily. This will continue for at least his first month at home. It won’t get much easier after that. He will require special care for a long time and possibly forever, and for now, even more than that. I’m so proud of our strong little guy. In spite of everything he pushes forward.

I have watched him deal with bouts of reflux, heavy hiccups, gas that I can’t really do anything about, trouble sleeping (mostly because of the reflux), and wheezing in his nose because of the NG tube (this is temporary). And yet, he still looks up at me and smiles, wrinkles his little forehead, and grabs at me for hugs. He’s already trying to hold his own head up, and can for a few seconds at a time, and today he discovered his own knees. Every day we have with him here in our home is a day we will cherish, and my life is made so much brighter by him. He’s a star of stars and I can’t imagine what a wonderful and amazing person he will grow to be, no matter what I know that he will be strong, he’s proven that time and time again. I also know that no matter what Mommy and Daddy will be here rooting for him.

How could I say no? He’s got a love like woah!

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He’s so damn awesome. I love our little dude. As you can see, he’s moved to his open crib, and as of now he’s keeping his temp just fine in the crib. He’s four pounds seven ounces as of last night. I had to go out to buy buy baby today, and I found out that they are apparently the preemie mecha of the midwest. They even had preemie socks! Those are really hard to find for those of you who don’t know. The other day we found out that the avent bottles we were using for him were too large, and putting food out too fast. So I ran out to walmart and picked up some Dr. Browns bottles, as the nipple was much smaller and softer. They did not however, have the preemie nipple size that Dr. Browns does offer. We tried him for a bit on the size 1 nipples that came on the bottles and they were not as fast as the avent but still a bit too fast for him.

So, today I ran out to buy buy baby and found they did in fact have the preemie nipple size for Dr. Browns bottle system. Hooray! Hoping that works out better for him. He’s taken 6 out of the last 8 feedings as full feedings, the two that weren’t one was 28, and one was 18. He’s shooting for 35. We’re hoping with this new bottle nipple he will be able to take the full amount of feeding each time. With the current set up he gets tired and fussy and isn’t interested after a bit because he gets big gulps and it hurts his tummy, it also gets air in there and makes him fussy. As of right now they are planning to take his NG tube out in the next few days and see how he does. If he pulls it out sooner they will leave it out (he’s got a habit of yanking it out of his nose lol). I kinda hope he does but it’ll be out soon enough. Since they are talking about taking his tube out that means he’ll probably be home very shortly. They were talking to me today about getting our CPR class done in the next few days, and getting his car seat test done. They will be giving him his vaccinations in the next few days as well, I signed the consent form for that today. He was unable to get his vitamin K and Hep B when he was born because he was a preemie so he’ll be getting them now. I am unsure about his vaccine schedule here forward with his adjusted age vs his actual age. That’s to worry about another day though! What I do know, is my baby boy will be home with us soon! Our little family will all be together and I cannot WAIT! He’s a little champ given that he’s not even 37 weeks GA yet and he’s already almost ready to come home. We will be rooming in at the hospital for a night with him before he comes home, they will make sure we feed him and take care of him okay and that he doesn’t have any unexpected issues while not being hooked up to any monitors or anything. I’m seriously so excited and am hoping everything goes well this weekend/this week for him to be able to come home to us. Wish us all luck and I’ll keep my blog updated on little Alexandr’s progress!

Shari, the proudest momma ever!

Postpartum guilt, or how I’m learning to love myself again, and let go.

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Today Alexandr has been in the NICU for two weeks. The good thing about this is that he’s doing extremely well. There’s an industry inside term in the NICU for Caucasian male preemies, they’re called whimpy white boys lol. One of the nurses was talking to me about this and said “well it’s not the most professional of terms but it is one we use” Alexandr does fall into this category, but, he’s absolutely stunned everyone by stepping completely out of this norm. The norm dictates that white male preemies have longer NICU stays, they tend to be sicker, and they take longer to grow/adapt outside the womb. Alex is progressing much much faster than they thought or guessed. He proved this last night. Alex is now four pounds two ounces, and is being weaned out of his isolette. His isolette temperature as of tonight was 28 degrees Celsius, and depending on the doctor, they’re typical goal is 27 degrees. The temp will be dropped to whatever the neonatologist in the morning decides is the best temp. Once it’s down to that level it will stay there for twenty four hours, and if he is able to hold his own temperature up to 37 degrees (roughly 98 degrees Fahrenheit) he’ll be allowed to move to an open crib and will no longer need his isolette. His suck swallow breath evaluation went well, and they discovered that the avent bottles we brought in have too large a nipple and the flow is too fast. It’s wearing him out faster than it needs to and he can’t keep up. Because of that he’s getting too tired to finish the bottle, and is having mouth flooding from too much milk coming out at a time. Today I went out and bought some of the Dr. Brown’s bottles with a smaller nipple and hopefully better flow for him that I’ll be taking in tomorrow. I also got a disposable camera for the staff to take pictures of each other, and some scrap book pages for them to write messages to Alex for when he gets older.

On to the topic that created the title. In the hospital I mentioned having a break down, and break down I did. I’ve had a lot of depression since Alex was born. Not toward him. I love Alexandr to death and want nothing more than to be his mother and have him home with us. What I was/am depressed about is my pregnancy, outside of being tortured and depressed from seeing him confined to the NICU. See, I’ve waited my whole life to have a baby. I’ve always wanted to be a mother and nothing has made me happier than that. I always had this idea in my head of enjoying being pregnant, waddling my ass around and having that “glow”, and just in general BEING pregnant. I was pretty happy during my pregnancy, if you read back in my blog you can follow that. I had my days, but for the most part I was super happy with the idea that I was harboring a tiny hitchhiker. The last few months of pregnancy tend to be the most exciting, you get to watch your belly grow quickly, you can see the baby moving around like crazy from the outside, you can see the big kicks, you spend your time nesting and getting ready for baby. I spent the last month of my pregnancy in and out of the hospital, terrified he wasn’t going to make it, in pain, sick, and stressed the hell out. No sooner did I get to thirty weeks in my pregnancy before everything started going to hell. Things moved quickly and my condition just got worse. The last month has been a complete blur in my mind. I have no idea where February went and then by the end of it Alexandr was here. March is moving even more like a blur without him here.For a large part of time I felt responsible somehow, like something I had done had caused it. I did everything right. I cut out things that were bad for me, I did a lot of things that were very good for me, over all I tried very hard to take good care of myself and baby and I did a pretty damn good job. My body failed me, and I was mad, and somehow felt responsible. Through the help of my loving husband, my doctors, and my nurses, I don’t feel so guilty about that anymore. Daniel told me that I should consider the fact that he’s doing so well. Perhaps if I HADN’T done all those things right, he’d be in a much worse off position than he is now. He’s right. I MUST have done something right because he’s seriously kicking ass. The other thing I had to/have to start getting over is the loss of that last few months. I felt and do still a little bit, feel robbed of that time. Alex is still supposed to be my little hitchhiker. He’s still supposed to be in my womb kicking me, listening to music with me, listening to me read to him, sleeping with me, and being a part of mommy still. He’s not. He’s in the NICU where he’s been for two weeks…that’s hard. It’s selfish in a way for me to long for that, but I think of it the same as mothers who feel robbed of their birth plan. I didn’t really care about any of that stuff. My birth plan was to have a c – section that was pre scheduled, and he was planned to be bottle fed. The one thing that was important to me was getting him to 39 weeks. He came a full six weeks earlier than that, a full seven weeks before he was due. I wanted that time, and it feels a bit like it was stolen from me.

I have had excellent support from Daniel in all of this. He’s been there literally at every turn, and we have had time to talk and deal with this together. I feel like he’s there with me and that we can lean on each other. He’s helped me feel better about the things that are hurting me, and helped me deal with the fact that I can’t change what happened, I can only look to the future and do the best that I can to be the best mom in the world to my son. It will take time for me to be okay with everything that happened, but in the meantime I’m going to start trying to love me again. When we did our photoshoot the other day I actually started to feel pretty again, and like a woman. I dressed up and put on makeup for the first time since Alexandr was born. My bump is starting to disappear and I’m starting to look like me again. I still have some weight to lose now that he’s here BUT I know that will come with time, and it’s really not that much. My incision is healing so well that it literally looks like a friggin paper cut. I will honestly be super surprised if it even scars, if it does I’m sure it will be super light. In short I’m learning to love myself again, and I’m getting myself ready for the idea that I’m finally going to get to be a full blown mother and that Alex will be coming home to be with us all the time. I’ll finally get to have the things we were working for, and what we, and I have always wanted. To be a family. No matter what road got us here, Alexandr has changed us and me forever, and I can’t wait to hold him in my arms while I read to him in my rocker, and put him to sleep in his crib.

Bath Day and Alex’s Upcoming Photoshoot!

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Today was bath day and Alexandr’s hair shows it! It’s growing even more if that’s possible and it looks beautiful. He smells lovely and seemed to enjoy at least parts of his bath lol. I felt like I did good and it was so nice to spend time with him today. I spent multiple hours at the NICU and just spent time with him. I had to let him sleep a bit longer when I got there, so I spent some time picking him an outfit. A group of wonderful ladies from the area have put together a charge to do photoshoots in the NICU for parents at no cost to the parents. I stumbled across this looking for support groups in the area and couldn’t resist seeing if they had the time to come by and visit Alexandr. Tomorrow one of the photographers is coming to the hospital to take pictures of us all as a family. Once I had a nice outfit picked out for him I still had about fifteen minutes to wait. I rolled a chair over to his isolette and sat in the dark quiet watching him sleep, holding my hand to the side of his isolette. It’s so hard to see him in that box.

Before long it was bath time! He did really well and I think I did too, for a first timer anyway! lol. He was pretty cooperative minus a few froggy baby kicks in the bathtub that sent the soap flying across the tub. I dried him and lotioned him, got him set up in his outfit for tomorrow. Then it was time for his feeding. He got almost all of his bottle down but not everything, he was rather tired from bath time. We have an evaluation of his suck, swallow, breathe reflexes sometime very soon, which will give us an idea of how he’s doing getting that down. He’s started wearing onsies under his little suits and halo sleepers in preparation for moving to his open crib. I sat with him holding him and rubbing his back putting him to sleep after he fed. I put his sweet head on my shoulder and held him close, he flicked his feet around on my belly and snuggled up, chewing on my neck and pulling my ears. He’s so sweet… Leaving him today was harder than it has been. Sitting there in the rocker holding him after all the days activity, it felt like home. I didn’t ever want to leave. I stopped short at the door and one of the nurses asked if I was okay, and I looked up and said “Walking out this door each time is harder and harder, and it’s the worst part of any day of my life” She smiled, reassured me, and told me he’d be home as soon as he was ready. I thanked her and told her to have a nice day. So many people will never understand how hard it is to walk away from that NICU. It’s all about baby steps, taking it one day at a time, and keeping hope that everything will be okay. I don’t want to forget any part of his life, and I hope that someday he’ll understand how much love it takes to do that every day.

We love you Alexandr, and hope against hope that you can come home soon.

A Letter To Alexandr

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Alexandr,

I write this to you now because I know that I have the words. If I fail to write them now, I may not remember it this way in the future. Today is your ninth day of life, and also your ninth day in the neonatal intensive care unit. Right now you don’t know what that means, other than you get a comfortable warm box to sleep in, we feed you a lot, and you aren’t with us but you do see us often. You certainly know who mommy and daddy are. You are in a place not many little ones visit, and you’re there because you came early. You weren’t supposed to be here until April. You were born in February. What that means is, since you were not ready to leave me, you are still too little to be with daddy and me. We love you so much Alexandr and I hope that no matter what over the years we do the best job we possibly can showing you that we do.

I want you to know that you saved mommy. Without you showing the doctors and nurses that something was wrong, mommy and you might not be here today, so even before you were born, you saved mommy, and yourself. That makes you pretty special, and amazing.

Right now showing we love you means that we take your temperature and change your diaper. We feed you as much as we can and spend time holding, kissing, hugging, and touching you. Today you tried to eat my finger, and I thought that was pretty cool. You return our love by smiling at us, open your eyes real wide, wrinkling your forehead with delight, and coo on occasion. When you came into this world you were only three pounds and six ounces. Most babies are over seven pounds, so you’ve got a long way to go to get that big. You won’t be that big when we bring you home, but with help from mom and dad, and some tasty food, you’ll get there eventually. You live in an isolette right now. Which is the box I was talking about. It’s kept warm for you like mommy’s tummy would have been, had you been able to stay with me. Because you are so small, we weren’t sure you were going to be able to breath on your own, but you came into this world screaming to let us know you were here. It was the greatest noise me and daddy had ever heard. They whisked you away from me after i met you, to take you to where you live right now. They put an IV in your little hand, and a pad to tell your temperature, pads to tell how your heart was beating, and a few other odd tubes and wires. Some of them are gone now, some of them are not. With time they will all be gone. Daddy went with you to this strange place we call the NICU, and when they were done putting on all your tubes and wires, they thought that is all they would find. Most guys who come as early as you don’t open their eyes, and they told daddy you wouldn’t. He looked at you and you decided to open them anyway! The doctors were confused and surprised! It would not and will not be the only time they have been surprised by you. Mommy got to come see you after she was all better, and got to hold you close for the first time. Her and daddy sat with you for a long while listening to you breath and holding your little hand. Later that night mommy came back, you were sucking on a pacifier and they were going to feed you through a tube. Mommy wanted to try to feed you through a bottle, they said I could try, but since you were so small, you probably wouldn’t take it. You took the bottle from me and drank the whole thing! See, more surprises for the doctors and nurses. You are full of them. Mommy spent a lot of the time she was still in the hospital with you, feeding you, holding you, and loving you. Now that she is home, she still goes as much as she can to the hospital to see you, and feed you, and hold you. You smile at me, and open those eyes, and chew on my fingers, and tug at your ears. These are all things you shouldn’t be able to do, but you do it anyway, against the odds.

Alexandr, there will be people in your life who will tell you that you are too small, and that you can’t. I want you to know that you can, and no matter what they say. Do not let people tell you your limitations. I have seen you break so many molds and do so many things out of turn. You are amazing, you are strong, and you should never let anyone else tell you otherwise. Daddy and I will always be here for you, and when those people tell you you can’t, and you want to show them all, we will be here to help you do that. Whatever you choose to be, and are in life, we will love you and support you. You can do anything Alexandr, you really can.

This journey is not over, and you will have to stay longer in the place you are now, but for now mommy and daddy are here being as patient as possible, doing everything they can to help you get better, and be ready for the day when you can finally come home. We will be here, and we will be there, where ever you are, that’s where we will be.

Mommy loves you, Daddy loves you, Don’t ever forget it Alex.

My son the ever eating hulk

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Alex is the life of the party in the NICU, he’s a super adorable dork who makes all the nurses giggle and swoon over how adorable he is. I’ve been trying my best to be there as much as I can while also taking care of myself. I think the NICU pediatrician could see that it’s taking it’s toll on me. He hugged me today and told me I was doing a wonderful job and that he was so happy to see a mom so dedicated to their child. They keep upping his amount to feed. When he was born that first night we got him to eat out of a bottle and he was feeding 4ml each time. He’s now up to 12ml feedings and he’s doing them in less than five minutes. He’s latching the bottle perfectly and tomorrow he will start using his Avent bottles, we’re going to bring them from home for him to use.

I wrote this this other day from the hospital and hadn’t had time to finish it.

I literally went to every feeding Alex had that night/day/morning. I wore myself out, and they started becoming concerned about my blood pressure. Turns out it was even higher now than before Alex was born. They told me they were keeping me another day. I pretty much lost it at that point. I was going crazy from being stuck in the hospital, not being able to take Alex home with me, and the stress of everything else I had to take care of at home and elsewhere, I broke down. After some help from Daniel, and the amazing staff at the hospital, I picked myself back up, and have been trying to stay on my feet ever since. I miss him daily and it’s hard that visits and phone calls are my only link to my son right now, but I know he’ll be home eventually and we’ll be here as a family. I was discharged without my precious boy on March 4th.

Alex has been progressing so well, he’s up to 30ml bottles, his weight is up to 3lbs 9oz, they have had to push some of his food through his nasal tube but for the most part he’s taking it from a bottle. He’s beautiful and spunky, he smiles and makes funny faces, and everyone loves his forehead wrinkles.

I love him very much and so does his daddy, and we cannot wait for him to get home.

Shari