survivingmyboyz

tales from a stay-at-home mom of four boys

Archive for the tag “NICU”

Looking back, two year later

Two years ago tonight, I layed awake in a hospital bed, hooked up to a multitude of wires. The wires were not only to monitor me and my extremely high blood pressure, but also to monitor my baby and his constantly dipping heart rate. I laid there listening for those dips, praying that they would fix themselves, and that my baby would stay strong enough to make it to the morning, when I was to have a csection to bring my baby boy into the world nine weeks ahead of schedule. It was much too early for my baby to come, but the doctors hoped that they’d be able to better care for him on the outside than inside me. I laid in that bed terrified, knowing that we were in for a long journey that I just hoped my baby would be able to survive.

Our stay in the NICU lasted 77 days, but our journey did not end when we came home. My son left the hospital with a feeding tube and we struggled for two months with feeding schedules, reinserting tubes, doctors visits,  pumping, attempting to breast feed, wheezing, and problems with breathing before we found ourselves back in the hospital. We spent another two weeks in the hospital being told to prepare for multiple hospital stays and surgeries. This child’s life had not started the way we had hoped and it was looking like it wasn’t going to get better anytime soon, but as the saying goes, it is always darkest before dawn. We received miracle news the day of surgery that my son had an easily treatable cyst and that the bleak future we had been preparing for was not going to happen. Two days later, we were back home and my son was eating like a champ, no more feeding tube.

That chapter in our lives feels like it was forever ago. When I look at my son now, it is hard to believe that he is the same kid who went through all of this. Aside from how skinny and small he is, no one would ever look at my son and guess that this was the story of his first six months. My son is turning two tomorrow and he has already been practicing for the part of the troublesome two year old. He is into everything, moving furniture, climbing on chairs, figuring out how to open things he shouldn’t, and making messes faster than I can clean them. I’m pretty sure his thinks his job each day is to mess up as much stuff as he can before he gets put to bed each night. He is very good at his job. As much as he loves to be near his mommy, he is very fiercely independent and insists that he do many things on his own and to be treated like his older brothers. He insists on big boy cups and forks. He wants to sit on the potty when his brothers do. He likes to play whatever his brothers play. In his mind, he is already a big boy. When he doesn’t get his way though, watch out, because he has been practicing his terrible two tantrums, complete with laying on the floor, kicking and screaming, and pushing his body about on his back. Luckily for him he has the cutest smile, the sweetest little curls, the prettiest blue eyes, and a contagious laugh that all allow him to get away with acting like a brat or making a giant mess. One look at him and your heart just melts.

Watching my youngest son sleep, cuddled into my bed with his brothers for his last night as a baby, it seems impossible that just two years ago he was my smallest baby. Just two years ago, that 18 pound ball of trouble was my 2lb 12 oz miracle baby. Two years ago, he was struggle to survive this journey, now I’m struggle to keep up. Happy birthday baby boy.

Our first Mother’s Day together

Dear Mom with a baby (or babies) in the NICU,

Today is the day in which mothers are doted on by their families. Mom are thanked and loved the way they probably should be everyday. The day is filled with hugs and kisses, cuddles and laughs, hand-made cards and jewelry, flowers and meals cooked by someone else. This is the day moms finally get to relax and enjoy watching their kids be kids, knowing that Dad is on clean up duty. At least that is how today should go, but for you, that is not the case. 

Your day probably looked more like this. You sat in a quiet, sterol room listening to the beeps, buzzs, and whoshes of machines. If you are lucky and your baby is doing well, you got to change a tiny diaper, take baby’s temperature, and enjoy some kangaroo-care with your little one. Maybe today you only got to place a gentle hand through a portal in the isolet for a small amount of time to touch your precious baby and let them know you are there. Maybe today wasn’t even that good of a day and you simply had to watch from outside of the isolet as your tiny little one, attached to a million wires, lay under the blue bili light. Or maybe your day wasn’t  like that at all because, though this might be your first Mother’s Day with your NICU baby, it is not your first Mother’s Day, so you made the painful choice to say home from the hospital today in an attempt to get some much needed rest and spend some time with your other kids. Despite your best intentions, you spent most of the distracted by your guilt over missing a day at the hospital. That choice may have been a hard one, but it was not a selfish one, I know, I made that tough choice last year and spent the whole feeling bad about it, but I’m glad I did.

However you spent this Mother’s Day and whatever mixed emotions you are feeling about this day, just know that you are not alone. Unfortunately, there are many Mamas in the NICU Moms club, the club that no one asks to be in. No two situations are completely the same, but a lot of the experiences and feelings are shared with other members in this club. I was a member last year and it was pure agony, but I wouldn’t change it because it made me stronger and more appreciative. I made it through and so did my little boy. You will also make it through and I pray that your little one(s) will too. Whatever your outcome, on the other side of it, you will find some sense of meaning and peace, though it may take a while.

Today I spent my first Mother’s Day with my littlest guy, after choosing not to spend my Mother’s Day with him last year. The fact that this was my first Mother’s Day with him was not lost on me. I reflexed back on where we were a year ago and what we went through to get to today. Our story last year made our time together today that much sweeter. Sure I was adorned by some of the finest pins and jewelry preschoolers can make, a spectacular breakfast, and I card that I know was a labor of love for my seven year old to write, and I loved it all, but the best present I received today was just the fact that my baby was here with me and I was able to bask in his beautiful smile all day long.

So to you mom’s with little ones in the NICU right now, my message to you this Mother’s Day is this: you aren’t alone no matter how lonely you feel right now. Things are hard, but they will eventually  get easier. Take a little time for yourself every once in a while so you are fresh and present for your baby. And enjoy  any little moments you can get with your precious one. My Mother’s Day wish for you today is, that next year your Mother’s Day will be as wonderful and filled with joy as mine was today.

  

Why does it still hurt?

Today I needed to get a foot X-ray from a three month old injure. My doctor sent me to a local hospital which I’d had the pleasure of visiting the ER of three times  in a four month period over a year and a half ago. This is the life of a mom with many small boys; my own visit was also due to injury caused by those boys. I’d  never seen outside of the ER before even though this was the hospital I was originally suppose to deliver my fourth son at a little more than a year ago. When I walked into the hospital in search of the imagining department my first reaction was, “this is a really nice hospital.” Within seconds, however, I was hit by a bigger, tougher reaction, as I choked back tears and a sick, sinking feeling.

This hospital  really wasn’t similar to the hospital I gave birth in almost 14 months ago, with the exception that it was pleasant looking, had a cafe on the first floor, and a little outdoor sitting area. Despite this, I was immediately transported back to my days visiting the NICU last year. I was completely surprised by these feeling because this wasn’t one of the hospitals that I’d spent time in with my youngest. Still these memories were triggered. The feelings subsided a little during my X-ray, but they came back strong again as I attempted to quickly peruse the cute gift shop that really resembled more of a store at the mall than at a hospital. This time I was overcome by memories of our stay at the Children’s Hospital over last summer and the gift shop there. I wasn’t able to hold back tears and felt suddenly nauseous, so I bolted for my car.

When I got to my car I began to cry. I couldn’t help it. I knew it was stupid, my baby was healthy and fine and with my neighbor, but my emotional self seemed oblivious to this fact. So I just allowed myself to cry, figuring that I must have needed it. After a few minutes I stopped, but I was then overwhelmed by a need to see and hold my baby. So as soon as I was able to compose myself, I raced home to see him.

It seems crazy that something that seemed so unrelated triggered feelings I thought I was getting beyond, yet it happened. It makes me wonder if I’ll ever be able to walk into a hospital again without falling a part. I know it hasn’t even been a year since we finished our hospital stays, but my littlest guy is doing so well, so why aren’t I? 

Happy first birthday: letting go of the NICU

It is St. Patrick’s day and I am sitting here, listening to Celtic lullabies, holding my littlest guy, decked out in his St. Patty’s day onesie, rocking him to sleep, and I am reminded of where I was a year ago today. One year ago, I was sitting in the NICU, holding my littlest guy, kangaroo-care style, and rocking his tiny body, too small for clothes, only a hat with a shamrock sticker on it to show it was St. Patrick’s day. Tonight I am rocking my littlest guy for the thousandth time, but a year ago, I rocked him for one of the first times, after waiting several days to finally be able to hold him.

Less than two weeks ago we celebrated a big milestone for my littlest guy, his first birthday. I was prepared for it to be a bittersweet day, a day of mixed emotions, but it wasn’t. The past week and a half since then has been the emotional part for me.

We had just a small celebration with our three other kids and my parents, which seemed fitting since they were the ones who were really there for us through last year’s ordeal and the ones that really sacrificed for my growing family. My wonderful mother was a Godsend when everything happened so I was glad that she decided to come out to celebrate our accomplishment of making it through that first year. There was no party and very little pomp and circumstance that day. I made a homemade vanilla cake with blueberry filling and blueberry butter cream frosting. I was obsessive about making it as perfect as I could and poured a lot of attention into the cake making processes. It is only now that I realize this obesession with the cake was a way of keeping my mind off where we were a year earlier. I felt like it was some how vital that his cake be perfect, even though he wouldn’t know otherwise, nor would he remember it later in life. He received a few gifts that day, but the main event of the day was a return to the NICU with gifts. I was insistent that it be done on his birthday because I felt the need for some sort of closure. I brought  one and a half dozen cupcakes, the same flavor as his cake, for all the NICU nurses working the different shifts that day. I had also organized and assembled,  with the help of one of my moms groups, care baskets for the parents in the NICU. During my small amount of spare time, during the months leading up to his birthday, I crocheted a dozen Easter bunny hats, like the one I’d made my littlest guy while he was in the NICU.  On his birthday, I delivered all these things back to the place where he had spent the first 77 days of his life. I thought for sure that I’d break down upon entering the NICU again, but it didn’t happen. I got a little teary eyed, especially when I saw one of his first nurses, who cared for him the most during his stay there. Other than that, I didn’t feel the need to escape quickly before I was overcome by emotion. In fact, I didn’t really feel that way at all that day. The days after his birthday, however, were another story.

People talk about having PTSD after time in the NICU and it is very much real. I know I never totally dealt with all of what was going on at the time and instead I pushed things down inside or tried  to brush them off because I didn’t have the time or strength to deal with them. I kind of assumed that it had all gone away with time, but that wasn’t  the case. A lot of these emotions and thoughts are starting to resurface now that we have made it through the first year. My husband keeps telling me not to be sad because our baby is healthy now, but it isn’t about that. I’ve found myself in a not too wonderful place mentally and emotionally the last few days. Some of this is partially due to how other people in my life dealt with (or didn’t deal with) this important milestone in my son’s life, but part of it is just the experience itself and the finality of the fact that this is my last baby and I didnt even carry him to term, hold him when he was born, or get to take him home and enjoy him until he was several months old, and even then there were still several more months of problems before I could let go and just be a a regular mom. On a recent trip to Target, I found myself close to tears while browsing the baby clothes aisle when I came across a pair of tiny little mittens that were identical to the ones they attempted to keep on my son while he was in the NICU. I started to think about him in the NICU with those tiny mittens that were still too big for his even tinier hands, then I began to think of how we will never again own tiny mittens like those because he is our last baby.  I’m sad because I feel like I want to have more babies, but not really, I  just want my time with him back to do again, but this time to do the way I had envisioned it. 

I want a chance to finish my pregnancy, know it is time to deliver him, and for both of us to be ready to meet on the outside world. I want a chance to hold my baby in those first hours, breathe in his wonderful baby smell, and rest with him in my arms after such a big day. I want to chance to buy those outfits that say “baby’s first” St. Patrick’s Day and Easter that I never got to because he was too small to wear them and because he really should have been celebrating these holidays for the first time right now. I want the chance to be a new mom who celebrates and shows off her new baby instead of one who hides away in the sterol world of the NICU, afraid to be happy because my baby might not come home.  I want to let go of and not know the anger I feel over people in my life not understanding or caring about the heaviness that comes with having a baby in the NICU or how monumental that first birthday is after surviving such a year. But most of all, I want to finally come to terms with and feel peace with how my last son came into this world and what he went through during his first year of life, because like my husband constantly reminds me, he is healthy now and that is what is important.

Despite  all these emotions and all the difficulties of my son’s first year, I know that I really wouldn’t change  it. My littlest guy’s first year made my family stronger, more appreciative, and showed us who really loved us enough to be there for us. His first year made my littlest guy stronger too and gave us a glimpse of who he is; a determined, stubborn, fighter, who is small but mighty. I guess that means that I just need to except these mixed emotions, allow myself to feel them, and move past them. Our experience in the NICU will always be a part of us, but it shouldn’t continue to hurt us. I am sure by the time we reach this time next year, our time in the NICU will feel like a life time ago, as I watch my littlest guy run around with his brothers, laughing and yelling, the picture of a healthy two year old.

A return to the NICU

The other day I decided to bring cookies to the nurses working in labor and delivery and the NICU for Valentines day. I hadn’t initially planned to do this and wasn’t expecting to go back there until next month when I plan to drop off a service project to celebrate my son’s first birthday. Still, I figured it wouldn’t be a big deal, the NICU is a secure ward, so I’d just call call in, someone would come to the door to get the cookies, and I’d leave; no big deal. I was wrong. It was a little bigger of a deal than I had planned on and prepared for.

I’d been back to the hospital exactly once since my son let the NICU and it took a lot of mental preparation to go that once. He was six months and healthy by then, just awaiting a second look to confirm there was no regrowth of his cyst. Driving into the parking garage made me feel claustrophobic, but other than the parking garage, I didn’t go into any other part of the hospital that was connected with memories. It wasn’t long after that that I stopped feeling tense anytime I drove in the direction of the hospital. I still got occasional pangs of painful memories if a certain song came on the radio and the weather was just so as I drove near the hospital, but other than that, I was pretty ok. Yesterday, however, I made an actual return to the second floor and the place where my son spent the first 77 days of his life.

When I called into the NICU, I really didn’t expect for them to buzz me back, but they did. The second those double doors swung open with a whoosh, that sickening-sweet sterol smell hit me, and I felt like I was floating in a dream. The first thing I caught sight of was my son’s original room, which now was occupied by some other little boy, with his name plate displayed on the door. I resanitized my hands upon entering and proceeded around the corner to the nurses’ station. One of the nurses who was usually at the desk was sitting there and immediately recognized me. I presented them with the cookies and focused on my task at hand. When I was done, the nurse who remembered me asked about my littlest guy. I began to tell her how great he was, but the familiar sights, sounds, and smells of the NICU, coupled with discussing my baby became too much for me. My eyes began to fill with tears and I had to quickly take leave, explaining that it was just too much to be there, but promised to come back with pictures next mother. I walked so quickly to the door that I forgot to hit the security button to let me out and I got stuck as the door made a little sound. I apologized, joking that I was out of practice, and made my quick escape. The tears came as I entered the stairwell. I was desperate to exit the building and get back to the car where my baby was. All I wanted to do was pull my baby from his car seat and kiss and hug him, thankful that he was no longer living on that second floor behind those secure double doors. Unfortunately, when I returned to the car, my littlest guy was sleeping so soundly in his seat, I didn’t dare touch him and wake him, so I had to settle for a quick glimpse of him before jumping in the car and heading out. It took me a few minutes to recover and I even began to tear up again as I told my husband about the experience.

This spur of the moment trip was too much for me right now, but I’m hope to be better prepared in a few weeks when I return for the one year anniversary of my son’s arrival and stay at the NICU. I’m not really sure how I will mentally prepare for this visit or how I will even deal with what would normally be a happy time for most families. It feels so bitter sweet to celebrate his first birthday next month. I’m so thankful for my son and the fact that he is now healthy, but I fear there are still a lot of emotions I never truly let myself feel and this might be the opportunity they take to escape. I’ve already felt great hesitation and sorrow at the idea of the anniversary of my two week bed rest approaching, so I know those feeling are beginning to stir inside me. I’m just hoping I can feel more joy rather than guilt and sadness on my son’s first birthday. I will just have to try to continue to focus on the present and future and my son’s beautiful smile to get me beyond the past and all we went through.

Ready for a New Year

This has been a tough year for us. It didn’t start off great, a stomach bug ripped through the family twice in the first few weeks, and then it got worse when I landed in the hospital on bed rest at 28 weeks pregnant and delivered my baby at 31 weeks. This year wasn’t all bad but I’m definitely ready to say good bye. Before I do though, I wanted to count my blessings and remind myself that even the darkest hours can bring light, it might just take some time.
Like many of my readers, we sleep-walked through the nightmare that is the NICU. We did 77 days there, though it certainly felt longer, but like my husband remarked today, that nightmare feels so much longer ago than it was (even if I still have some PTSD from it). We took home a struggling baby, still living off a feeding tube and struggling to breathe. We received crushing news that he was probably going to have repeat surgeries for his first year, possibly longer. We dealt with a second hospital stay only two months after bringing him home. We found ourselves in some very dark hours. During those dark hours though, we learned who truly cared for our family (and unfortunately, who couldn’t be bothered with us). We saw the great compassion of strangers and became closer with people we barely knew. I found a renewed sense of God and religion. We also received better news than we could have hoped for.
Now we have a happy, healthy, wonderful baby boy. We feel so blessed. Our struggles were tough, but instead of feeling like we were cursed by all that happened, I feel like it has given me hope and purpose. I discovered multiple preemie support groups on line and I’ve continued to keep in contact with them. I feel like my pain and experience can now help others going through similar situations. I feel like we received so much love and charity in our time of need that I want to pay it forward and make next year not a year of need, but a year of giving.
Looking back at this year and coming out on the other side of everything, I feel blessed. I have four beautiful boys who I love with all my heart. I have a wonderful husband who helped me through this year and I feel closer to for it. My baby made it out of the hospital just in time to enjoy nearly perfect summer weather which allowed us to be outside. We had family outings to zoos, beaches, and parks. We welcomed my all my family for a reunion and enjoyed time together. I witnessed my usually timid 4 year old (now 5) decide to take off his training wheels, hop on his bike, and start riding all by himself. Despite everything this year, we laughed, loved, and enjoyed each other as a family.
This year didn’t start off well and the majority of it sucked, but it also brought hope. So for those of you still living through those struggles, just know that they do eventually end, hopefully in a positive way. However and whenever they end though, you will be stronger for it and hopefully find a higher purpose through your struggles. 2014 wasn’t my family’s year, maybe 2015 won’t be your year, but whatever this year brought and next year brings, count the blessings you do have, enjoy those little moments, and know that there is always hope with the New Year.

The present of presence thanks to the NICU

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Over the past few weeks I have been participating in the gratitude challenge that many people do on Facebook. For those of you unfamiliar, basically you post one thing you are grateful for each day leading up to thanksgiving. I usually pick something that has stuck out to me that particular day in hopes that I’ll also be extra observant of the wonderful things in my life. This year, though, I have struggled with this challenge, not because I don’t have things to be grateful for, but because I have one thing that I am so grateful for, it seems to outshine all the other things I am grateful for from year to year. I am so grateful for my littlest guy and his health that it makes it hard to see past this giant blessing to focus on any of my other blessings. Then one day, as I sat trying to think of something other than the obvious (the baby in my lap) to post about, I realized something I was grateful for that I decided not to post on Facebook for fear of it being misunderstood. I realized, that despite how hard this year has been and how tough having my baby in the hospital struggling for his life was, I am grateful that it happened. I know that sounds strange, but now that he is healthy, I feel like I can say it. I am grateful for our experience in the NICU.

Obviously I never planned for or wanted my baby to be born 9 weeks early, to be in the NICU for 77 days, to have to shove a tube down his nose so he could eat, or to watch him gasping to breath as he lay in the hospital crib for another two weeks over the summer, but all of this did happen and we made it through to the other side. Not all babies do make it through this struggle and some families fall apart, but we survived. Yes, I am grateful for this, but that’s not what I’m talking about. I’m talking about being grateful for the experience of having a preemie and a sick child and how it changes your perception of the world afterwards. Many people walk around this world living privileged lives and are never truly challenged, so they never have their eyes opened to how precious life and every little moment in it is. These people take things for granted, they miss the special moments in life. Even those of us who have faced challenges, sometimes enough time goes by that the memory of the challenge begins to fade and we can begin to lose sight of what is truly important in life.

For example. The first time I got pregnant I was excited, but I didn’t totally love being pregnant. I began to lose sight of just how precious the miracle that was happening inside my body was, until I lost it toward the end of the first trimester. I was devastated by the loss, but when I become pregnant again, I was sure to enjoy every minute of it, constant morning sickness and all. It was because of that initial loss that I was able to truly bask in my pregnancy and enjoy it, no matter how unenjoyable some parts were. When I had sever morning sickness, I just told myself that it was a good sign, that it meant the baby was still there and growing. Sure, I was terrified right up until I actually held my baby that I would lose him, but I also felt the gift that that pregnancy was. Of course, three pregnancies later and enough time had gone by that I wasn’t so in love with being pregnant anymore. This last pregnancy had hardly started and I was looking forward to it ending. Unfortunately, I got what I wished for, with it ending 9 weeks earlier than it should have. My last night of pregnancy I laid awake, trying to take in all I could of my last hours of being pregnant, mourning the idea of it ending too soon.

Now I am the mom of four boys and life is crazy and busy. It is easy to get lost in the chaos. I was busy when I had only three boys and often felt overwhelmed trying to take care of them and get everything done. I stretched myself too thin trying to be super mom. I’d take on tasks, join committees, plan outings, have a million projects going, all while trying to get all the laundry done. Despite all the things I’d be doing for the kids, I’d often forget to stop and enjoy these things, to actually be present in the moment. Sure, I’d take the kids on special “dates” to get some quality one-on-one time with them, but at the back of my mind a “to do” list a mile long was always going. Baby number four was in danger of being just added to the pack as I continued to move about doing all the things I was doing. Then he came early and my entire world slowed down. Suddenly, my life as I’d been living it completely changed; it wasn’t until all these month later that I’d realize it was a change for the better.

In the NICU, all you have is time. I would sit for hours and hold my baby. I’d focus on him; his tiny frail body, his shallow breaths, his sweet little smell. Some days I miss those endless hours of cuddles. When my littlest guy came home, he was on a feeding tube and a strict feeding schedule, this made it tough to do outings with the boys or start any new projects. Then we had our second stint in the hospital and faced a future filled with hospital stays and surgeries and many missed moments with my older boys. I began to think about all the little events that meant so much that I was going to miss with them. When we received the miracle good news and I was able to bring my baby home healthy, my perception of life as a mom of four boys changed.

Now I am sure to be truly present and take in all the important little events I was so worried about missing with my older boys. I am in the moment, mentally recording birthdays, holidays, “dates”, and traditions I take part in with my boys. I have attempted to prioritize my time. My “to do” lists are more of like weekly suggested goals that get written down on paper in hopes that I will not constantly play the list over and over again in my mind, freeing up my mind to be with my kids. I sign up for a lot less committees and I currently do not run any. I take time each day for cuddles and fun and try to remind myself to slow down and enjoy life.

As for my littlest guy, I am over the moon about him and how healthy he is. He is such a happy baby and his smile is contagious. I am constantly kissing and cuddling him. I smell his sweet baby head ever chance I get. I kiss and zurbert his stomach with every diaper change. I spend large amounts of time just watching him play or sleep and marvel at his existence. And, at least once a day, I try to find a little time to sneak off with him for some quiet cuddles. I rock and nurse him while singing to him some of the songs I sang to him while he was in the NICU. Once he is asleep, I linger longer than necessary, just holding him and enjoying being close to him.

So when I say that I am grateful for our time in the NICU, I’m not talking about being grateful for the nurses and doctors, or that my son survived (though I am clearly thankful for both those things), I mean I am grateful for the actual experience and how it changed my life. I am grateful for the appreciation of life that this experience has given me. I feel like the NICU not only saved my baby’s life, but mine as well.

Still haunted by the NICU

My poor littlest guy is sick. His little nose is stuffed up and he is cranky and miserable. He is my fourth child, so a sick baby, while not fun, is nothing new to me. Like all my kids when they are sick, I feel bad for him, but I also feel something else for him that I don’t normally feel with my other three, I feel scared. No, I’m not worried about him having Ebola or the enterovirus 68, I’m worried because he has a stuffed up nose. Such a simple thing that we all deal with from time to time, but for him it could become so much more. I guess this is just part of what life becomes after you bring a preemie home from the NICU.

My littlest guy is almost 9 months (7 months adjusted) and he has been out of the NICU for about 5 months now. Coming home for the NICU doesn’t mean he is done being a preemie though or that he won’t have more problems. Over the summer we end up in Children’s hospital for two weeks because he had gotten the Rhinovirus during its off season when no one at home seemed to be sick. He also had a cyst removed from his airway during that time. That was almost 3 months ago and he has been a happy, healthy baby who seems to be thriving since then, but that doesn’t stop my fears or erase his medical history.

Two months ago we went to a NICU reunion at the hospital my littlest guy was born at. This was a happy occasion in which we got to show off how healthy he was to all his old nurses and check up on his old NICU neighbor, yet I still had a panic attack the second we entered the parking garage and began to drive up past the fourth floor to park like I did nearly everyday for 77 days months earlier. My husband thought this would be cathartic release for me, doing this, but it wasn’t. Instead, a lot of old feelings and anxieties were brought back up and I found it very difficult to be there, even though we were on a different floor than the NICU was on. A few weeks later we returned to the Children’s hospital for a follow up scope. My son had showed no signs to make us think that the cyst had returned, yet I was still a nervous wreck that day. After the scope, he was laying in my arms, half conscious, and he let out a small cry. On his breath I could smell that sickening smell of the anesthesia they had used and I thought I was going to vomit as all the memories of those two weeks I spent living at that hospital with him came flooding back, along with all the fears and anxieties we were facing back then. My son’s scope came back fine and we were discharged from the ENT completely. As we left that hospital that day, I was happy to be leaving and hopeful of never returning, but I also felt a hint of hesitation and worry in writing this place off as a place I’d never go back to, knowing that there was always a possibility we could see the inside of a hospital room there again.

In the past month or so, as cold and flu season has approached, I’ve had lots of preparing to do to get us through this season. I’ve loaded up on vitamins, probiotics, and tried to take preventative measures with my older kids who are in school and bring home germs. I’ve become a hand washing dictator, constantly questioning kids, smelling hands, and making people rewash hands if I am not satisfied. I’ve stocked up on essential oils, homeopathic medicines, Tylenol, and Advil incase anyone does become sick. I’ve fought my insurance company and won to ensure that my littlest guy can receive RSV vaccine shots each month during the RSV season. I’ve cut back on taking the kids places were colds breed like child care at the gym, kid pits at the mall, and just about anyplace in the general public that we don’t have to go to.

Even with all this, my kids will still get sick and they will pass it on the my littlest guy, like they have done this past week. So now I wait, watch, and do all I can to help my son breathe and eat despite his stuffy nose. This year has not been great and has thrown us many curve balls, so I worry what else will come our way as we try to run down the clock of the last two months before we can hopefully start a new, healthier year. I fear that a simple stuffy nose with land my littlest guy back in the hospital because I know that with a preemie, it is a very real possibility. I’m not sure when this fear subsides or when things become “safe” for my littlest guy and I can begin to feel like he is just like all my other “normal” kids. Right now I’m just trying to make it through the first year and keep him healthy. Most days I am able to enjoy my littlest guy. I marvel at how much he’s grown and changed. I cuddle and kiss him. Behind all the smiles I give him though, are a hundred worried thoughts and a video recorder taking in that moment as a memory “just incase” because in my mind, he is still my little 2lb 12oz preemie who I fear won’t make it. He might have left the NICU, but the fears of the NICU haven’t left me.

The parting of the storm clouds

This past Sunday, my husband and I had the rare opportunity to get out of the house, sans kids, for a date. With family coming in and out of town over the past few months to help us out, we’ve actually managed to escape kid-free a few times, but, as enjoyable as some one-on-one time with my spouse was, those dates weren’t really relaxing, until this past Sunday. Before this past Sunday’s date, our past few dates were marred by heavy hearts over the struggles of our youngest son during his young five months of life. This past Sunday’s date was different though because the clouds that have darkened our lives since a few weeks before his birth have finally lifted.

On the sixth of this month, my littlest guy celebrated his five month birthday by leaving the hospital with no plans of returning. After struggling to live, breath, and eat from the time before he was even born and through his entire little life, my son is finally able to invest his energy in more age appropriate activities, like discovering his hands and feet. Only a little more than two weeks ago we were sitting in the hospital again with my littlest guy, facing a calendar full of surgeries and hospitalizations through at least the end of the year and even the possibility of a permanent trachea tube. Today, we are home, enjoying all of life’s small moments of happiness and feeling blessed.

Our littlest guy struggled through a respiratory virus, with the assistance of steroids and some extra oxygen, and was healthy enough to go under general anesthesia for a more comprehensive scope of his airway last Monday. My husband met me at the hospital the morning of the procedure and we sat together with our littlest guy, comforting him as they prepped him for the procedure, trying to prepare ourselves for what we were about to find out and what the future held for our son. The doctor promised that the procedure would only take minutes to get in and evaluate his airway, then we would be told how they would proceed to attempt to fix the problem. We were prepping for a long tough road. We waited nervously in the waiting room ,for what seemed like hours instead of minutes ,for the call. When the OR nurse called, I spoke with her on the phone as my husband and I held hands. Soon tears streamed from my eyes as I felt the oppressive storm clouds that had been hanging around me for so many months finally part and I could breath again. There was a minute chance that when the doctors got in to get a better look at my son’s airway, instead of scar tissue, it would be a cyst. The chances were so small that they didn’t even mention the possibility the first time we saw the ENT doctor. If this was the case, they would be able to pop the cyst and clean out the airway with minimal work being done and little recovery needed, it was the absolute best case scenario, though highly unlikely. We had so many people pulling for us and praying that it must have worked because the nurse said those words we were not prepared for, “it is just a cyst”! We were overjoyed! I couldn’t stop crying from relief, excitement, disbelief, and happiness. My little guy was not going to need the multiple procedures and surgeries we were mentally preparing ourselves for; he wasn’t going to spend his entire first year in and out of the hospital! We couldn’t have asked for a better outcome. When we talked to the ENT doctor, he expressed how excited and surprised he was to find just a cyst; it was so unlikely. He was so excited that he told the nurse to call us immediately with the good news. All the nurses and doctors on my son’s medical team were so happy and even better, they were in shock by how great my son was doing as soon as he woke up in the ICU. When I first entered his ICU room, my son was sleeping. He was so quiet, unlike his normal, loud, labored breathing, I had to check for myself to make sure he was still breathing, despite all the machines he was hooked up to telling me he was fine. When my son woke up, it was like he was a totally different kid. He went from eating 40-65mls of milk over the course of a half hour to downing 70-100mls of milk in 10 minutes! His breathing was quiet, not labored. This gave him extra energy to discover his tongue, talk more, exercise his arms and legs, and just be more, overall happy and alert. He seemed ready to go home within hours of the surgery and the ICU staff said they would’ve discharged him from there if they could’ve, but ENT made us spend a night in ICU. Once we moved to a room on a regular floor, my son kept setting off all the machines by being so active that his sensors kept coming off, so nurses relieved him of wire after wire relatively quickly. We were able to convince the doctors to only keep us one more night after leaving the ICU.

So, to celebrate his five month birthday, my son left the hospital (again) able to breath and without a feeding tube! He is home and happy and doing the things a five month old (3 month adjusted) should be doing. At his last doctor’s appointment he had gained 1pound, 1oz since she had seen him a month earlier, not bad considering he had lost some weight when he first went into the hospital. At last check he was a hefty 9lbs 8oz.

In the coming weeks my littlest guy will still need to do some follow up visits. He is done with OT, but still needs to see the nutritionist. We are hoping that she will allow us to send back all his feeding tube equipment by the end of the month and that he will come off the fortified breast milk and be able to eat just regular breast milk within the next two months. He goes back to see the ENT doctors in a few weeks and in the middle of next month, he with go under general anesthesia again for another look, to make sure the cyst has not returned. If there is no sign of regrowth, he is home free! Despite those follow ups, I feel like this is finally, truly over.

I now find myself enjoying an ease that I have not felt for a very long time. I have been able to stop holding my breath and don’t have that constant worry at the back of my mind. I find myself fully enjoying the moments in life, big and small. My favorite moments right now, are the ones in which I am able to watch my three older boys playing while holding my wiggling, giggling littlest guy. The storm clouds have finally parted and I am enjoying the sunshine in the form of a toothless, drooling smile.

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The before and after picture of my son’s airway. He was basically breathing through a straw sized hole that went even further back than the picture shows.

Struggling to breathe

I feel like I’ve been punched in the gut and I can’t catch my breath. I’m gasping for air, but it just isn’t coming. I’m gulping back tears and it just makes it that much harder to breathe. Maybe this is how my littlest guy feels most of the time. God I hope not, it is almost unbearable.

Today my littlest gut was suppose to have a procedure to get a better look at the scar tissue below his vocal chords so we could come up with a plan on how to proceed. About an hour before the procedure, his do to came in and told me that they were going to hold off on the procedure a few more days until he was a little healthier. They were concerned that going in would just inflame his airway more and that he would end up intubated. I felt a little upset at the idea of still not having answers and the ability to plan, but mostly I felt relieved because I was worried after talking to the anesthesiologist yesterday. To help the part of me that needed answers and the ability to plan, I had the doctor go over the options of what might happen once they had the chance to get a better look and what the time line was like. Here is what I was told:

It could be anywhere from two days to a week before he will be healthy enough to do the procedure just to look at the scar tissue. Once eh get in, it will depend on how inflamed the airway is whether or not they can attempt to fix it that day or if they will have to put him back under another day to fix it. If, by rare chance, the problem ends up being just a polyps or cyst, they should be able to take care of it right away. The likelihood, however, that this is the problem is extremely low. The less invasive solution would be to do the balloon dilation he had previously talked about, but this procedure isn’t as simple as he first made it sound. If it looks like the dilation might work and they do it, he then needs to be intubated after for about two days in the ICU, then observed out of the ICU for another 3-5 days, so we are looking at an additional week in the hospital, if all goes well. Here is the new part he hadn’t told us yet. A month later, my littlest guy will need to come back to the hospital, go under again, and have it all checked out and probably be dilated again and spend another week in the hospital. They will likely do this three more times. After the third time, there is still a 60% chance that this will not have worked and they will have to open him up and do reconstructive surgery on his airway anyway. If the take a look at the scar tissue and decide right away that he needs he reconstructive surgery, he will be in the hospital an additional one to two months and then could still have to do the same process, just in reverse, with the repeat dilation once a month for three months. Even after all,of this, it is still only a 90% chance of success and he could end up with a tracheotomy which may or may not be permanent. So basically, we are looking at another 3-5 weeks in the hospital at a minimum and several more hospitalizations through the rest of this year. This was not at all what I expected.

My mind immediately started running. My poor little guy was going to spend the majority of his first year of life in the hospital. He was going to have multiple procedures and be put under anesthesia several times, which was a risk in and of itself. He was going to be in the hospital when he turned five months old in a week, and possibly when he turned six months old. Instead of being home working on tummy time, mastering rolling over, and learning to log roll, he was going to be in a hospital bed hooked to tubes. He will probably back slide on all the progress we worked so hard to make with him nursing and taking the bottle because they are only tube feeding him now. He could end up with more eating issues and have trouble eating solid food because of this. I might not be able to breast feed him anymore and will probably never get to the day I’ve been longing for where we ditch the breast pump and bottles and I’m just able to nurse him on demand whenever and wherever like I was able to with my other boys. I wasn’t even willing to let my mind go to the thought that he could end up with a tracheotomy permanently.
Then there are my three other children who are 6 and under. We were just starting to get life back to normal after three months of upheaval this past winter into spring. My kids had such troubles with everything then. We were just finally getting all three boys sleeping back in their own beds, getting over reactionary potty issues (and were even getting ready to potty train the two and a half year old this month), getting behaviors back under control, and giving them a sense of consistency. I have my oldest in tutoring twice a week and have been really trying to work on his math and reading skills at home in order to catch him up after a big slide in academics at the end of last year. Now we are looking at starting a new school year with the baby back in the hospital and mom living at the hospital with him (because children’s is in the city, it is too far and too much traffic for me to travel back and forth like I did when he was in he NICU). Plus, the boys have had he baby home for just about two months now and are used to him being there, now they have to get used to him not being there. My four year old is obsessed with the baby and constantly wants to be near him and help out with him. My oldest feels huge responsibility about needing to protect his younger brothers and was just expressing his concerns to his therapist yesterday about needing to protect the baby. Now they can’t even visit him because he is in isolation due to the virus.
I think of all the things I will miss out on with them over the next few weeks. Not only will I miss the everyday moments like meals and bedtime, but I will miss the end of their summer. There goes all the plans I had for them, all the crafts, trips, and adventures I had planned. I won’t be there for the local celebrations and parades next month. I won’t get to experience the blissful joy my four age old experiences at the fire fighter pancake breakfast in our town next month. I won’t get to sit on the porch and watch them ride bikes up the drive. I won’t get to take them to the zoo, the beach, or blueberry picking. There will be no Thursday evening farmers market, picnic dinner, and playtime at the park. I will miss all of my four year old’s Tball games and the picnic dinners we do at the park on those nights. I won’t be able to take my boys shopping for back to school shoes or take my oldest to pick out school supplies and a new back pack. I might not even be there for meet the teacher night, the preschool back to school picnic, or even the first day of school. I might even spend my birthday watching my youngest recover from surgery instead of seeing my oldest off to first grade and taking my younger ones out to breakfast like I’d planned.
Then I think a head to the months of procedures and recovery we are looking at for my littlest guy. What will those months hold for him? Will he miss out on things like his first Halloween and trip to the pumpkin patch? Will he be around for thanksgiving and his three older brothers’ birthdays or will I be torn between being with him in the hospital or with my three other boys to celebrate? What about Christmas and all the traditions? Will his first Christmas be ruined? This whole thing goes beyond this next month or so. I don’t dare to even look past the end of this year and any truly lasting problems he could have.

For this very moment though, my husband is trying to keep me grounded and thinking about the next few days. Those I’m not worried about. My parents will be here until the weekend, then they have to head home and are off traveling for most of the fall. They have already done more than I could ever thank them for anyway. The question now is, what do we do with the other three boys for the rest of the summer? How do we give them some sense of security and consistency amidst such chaos? Who watches them so my husband can work and earn a pay check so that we can pay the bills? How do we afford childcare for three boys full time for several weeks, possibly months? We were already playing catch up before the baby was born because our move here set us back and we needed to recover, then all the expenses of mine and the babies hospital stay happened. I was just starting to try to figure out payment plans for all those bills and now we have a new host of costs. Most of the medical stuff should be paid for until the end of the year, we have certainly hit out limit, but it is all the other things, like the huge child care expense, gas, food for me while I live out of my son’s hospital room, and unexpected little expenses that throw things off. It feels wrong to be so broke and in such a bad state when my husband has such a good job, but as many families know, it doesn’t take much to put you under water. No one ever plans for this types of things to happen. Worst of all, I just don’t have the mental capacity to deal win all this because I just need to focus on my kids and what needs to be done for them (sorry bill collectors).

So now the question is, where do we go from here? How do we continue to survive in limbo? Hopefully I can figure it all out once I’m able to breathe again and hopefully my littlest guy will be able to breathe better sooner than later.

*disclaimer and apology, this post was not proof read or edited before posting.

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