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The Waiting Game

I mentioned in one of my first posts that when the NICU doctors kept using the word “months” in reference to the length of time Luna Bell might be in the hospital, I was indignant, even a little angry that they would even think that it would take my little superhero months to be well enough to go home. But after two months in the hospital, the reality of “months” was now like a punch to the face.

Luna Bell was doing well, all things considered. She was finally extubated, she was growing and she was a relatively happy baby for being stuck in a hospital bed and not being allowed to do all the things that babies her age should be doing. Now that she was extubated, I believed that we were thisclose to getting her home. But we still had a road ahead of us. Her lungs were still not doing all they should be doing, she still needed help keeping her oxygen levels up and she was still struggling. This part of our hospital stay was a lot of waiting. A lot. The daily questions between Kevin and myself as we did our check in’s with each other depending on who was with Luna Bell, was how is she? What are her stats today? How is she breathing? Is she happy today? Did you get to hold her? The answers varied, as they would for any baby. Some days she was breathing really well and her levels were great, some days she was struggling a little more and not happy about it. This part of the NICU story gets a little mundane…almost boring. There were no longer the high highs and the low lows. We were just seeing how she was doing every day and letting her continue to heal and grow and get stronger. About 2 weeks after Luna Bell was extubated and put on a c-pap, she was moved from the critical NICU to the NICU. This was a huge move. Literally to a different part of the hospital, the newer part where we had a huge room! There was bathroom in her room, a pull out couch we could sleep on if we wanted, the ability to eat our meals in the room and a tv that played little programs for kids, soothing videos with music and movies for kids. Where was this room when she wasn’t doing well at all?! Where was this room when we didn’t want to leave her on nights she was having a rough time? We got over the frustration of not having this luxurious room before and just enjoyed ourselves. Some days she was racing to the finish line, and other days she just maintained, but we could see that finish line. It may have only been through binoculars, but we could see it. Until we reached it, we would keep playing the waiting game.

Two

My Sweet Luna Bell,

Today, my little girl, you are two.

At 1:33am this morning, I celebrated the 730 days you have blessed this earth with your presence. You have been a force to be reckoned with; a superhero in your own right, the recipient of so much love and adoration by your dad and I, and a joy to so many. You surprised doctors and nurses for the your first 117 days while you resided at Seattle Children’s Hospital. You became known for your feisty personality and sweet eyes and was nominated the cutest baby in the NICU by multiple nurses and all of the resident doctors that had the privilege of caring for you.

You were a challenge and a mystery right from the start. We didn’t know if you would be able to breath or not when you were born and when you couldn’t get that first breath on your own, your strong will came through in the maddest little face. You worked hard everyday to get well and get strong and grow new, healthy tissue on those little damaged, unhealthy lungs and get yourself first off the breathing tube, then the c pap and then you literally took yourself off the high flow support so many times they finally decided you were ok without it. Your voice was strong and clear and even now I say “For a kiddo who had lung issues, you’ve got quite a set of lungs!”

You finally came home with us three days short of four months old. And the joy at having you home with us was overwhelming. You required extra care, continued medication and a feeding tube, but you were home. No longer did we have to hover around your hospital crib or hold you with a dozen wires and tubes. I had told your daddy that it was my dream to hold you with my shoes off. And I finally got to live out that dream when we brought you home.

For the next few months you had some struggles, but with the help of an amazing physical therapist and doctors, we got you through the tough stuff and then one day you were one! A few months later, on a March evening you walked all by yourself for the very first time. We looked at each other and squealed! And then about two minutes later you walked to daddy. From that day on you haven’t stopped walking and running and climbing and getting into all kinds of trouble!

The strangest time of my life came when the Covid virus closed everything down. Hopes of continued visits to the library every week ended. Hopes of days at the park, the zoo and traveling to meet friends and family were stalled. And while everyone around you was desperate for anything to do, you thrived. You walked and learned to run. Your motor skills excelled and you began to eat. And then you really started to eat. Everything. Every meal. You drank from any vessel you could, sometimes with help but more so without. Finally, on August 26th you had your last feeling through your tube. And we began tracking your growth and your calories and and you no longer needed your feeding tube. It was a while before we could convince your doctors that it was time to remove the port, but today you have an appointment to see about FINALLY getting that little piece of plastic removed from your tummy once and for all.

It impossible to describe the feeling or feelings that I have when I watch you run about, so confident and busy and sweet. When you squeal and run towards me when I get home from work, it’s the best feeling in the world. You are more than a preemie baby who had such a rough time for a while. You are more than the baby with the feeding tube and the backpack. You are more than just my daughter or your daddy’s daughter. You are a whole, amazing, beautiful person all your own. You are smart and funny and kind and independent and spunky. And I couldn’t be more proud to be your mommy.

You have rocked your first two years and as you start your third, I know there are big things on the horizon for you. More exploring and learning, talking and finally settling down long enough to have your mommy or daddy read you a book. More dancing and living and meeting new family and friends (once this COVID thing is over) and hopefully still down for lots of cuddles and love.

I love you, my sweet BabyBean. I waited for you for a long time, and you have been totally worth the wait. Luna Bell, you are loved and cherished and I hope that no matter what the years bring, you always feel that love and security and have confidence in yourself. Because you are magic.

Happy Birthday my sweet Luna Bell! I love you so much. And I can’t believe you’re two.

Love, Mommy

Family First

I’ve always been fiercely loyal. Maybe it’s being a Scorpio, maybe it’s because I saw my parent’s families not being very loyal to each other and the damage that caused, or maybe I see a need for a good friend and loyalty in others and feel that I’ve met kindred spirit and I want to be that loyal, true friend.

I’ve typically been that way in romantic relationships too. In my former marriage, I had all kinds of secrets. I didn’t share the problems or struggles with others because I felt it was a betrayal of some kind of vow I may have made to keep any and all flaws hidden from public view. It was more out of fear of what others may say or how I might be judged than loyalty towards the end. And after all my trust had been betrayed, keeping those not-so-dark, but perhaps embarrassing flaws hidden wasn’t all that important. I’m trying to not be so guarded in this relationship, because I have a group of amazing friends that are there no matter what; judgement free, and ready to help a girl out.

Because I don’t have a large or very close family, MY family; the one Kevin, Luna Bell and I have created, is the most important thing in my life. We’ve been through a lot from the very beginning of Kevin’s and my relationship to today, when we have a toddler, and busy work schedules and the need to still be individuals and not just partners and parents. And from time to time, we have to deal with those in our lives who are less than helpful in our efforts to be a strong, happy family. There are those who’s selfishness and disrespect has left their mark on our relationship and caused some trying times. So how do you deal with family or “family” or friends who take advantage of a kind heart, a willingness to forgive, and continue disrespect your relationship? How do you call out those that aren’t worthy of your friendship, but you still feel a loyalty towards?

Full disclosure, I don’t have a clue.

I’m still navigating the delicate spiderweb that is family dynamics. Being part of a new family (or a few families in my case) and being the mom of a new member of that family can be difficult. There is also an age gap with Kevin and myself that puts me in the age bracket just above his oldest sister and in old-enough-to-be-her parent range of his youngest. Still I look to these amazing “sisters” as role models for how to be a good sister, wife, girlfriend, and especially mom. I’ve found a group of women who are fighters; strong and proud and always there to give a kind word, an encouraging hug and some of the best support when Luna Bell was first born and all through her fight in the NICU. This is the family that I think I always hoped for. There are also amazing older cousins to Luna Bell. Three strong, smart, active in their community and social issues young women who couldn’t be better role models to my daughter. And a young man who just turned 6 and watches over Luna Bell when they play, has always been super sweet to her since the day they met. And then the little girls. One is one year, five days older than Luna Bell and they are two peas in a pod! And a nearly one year old that Luna Bell doesn’t know what to do with yet, but will love when she can join in the running around!

Finding family or friends who can support you in the most difficult times of motherhood, or parenthood and the trials of relationships, is like finding a diamond in a sandbox. Those reassuring words that come at the best time or the recollections of when their child was your child’s age that make you feel like your kiddo is going to be ok. In a sea of negativity and judgement, these people are life rafts.

I can only hope that I am the same support to my family and friends. I try every day to be supportive, a good listener, give advise when I can and sometime just say “I’m so sorry, that sucks!” I love my family and chosen family and am loyal to the end. And luckily the family members I have become close to are amazing. I want to be open and kind, but I’m guarded with most people. Too many have mistaken an easy smile and a kind heart as willingness to be taken advantage of or have myself, my relationship or my family disrespected. I learned long ago to listen to my instincts and to hold some at arms length. As we get deep into Scorpio season; I am a Scorpio. I am fiercely loyal, quick to dismiss toxic people and I will always keep my family first.

Some Days

Some days are a little easier or harder than the others specifically when raising a child. Many times we just coast through the days, maneuvering the little bumps and twists and turns that come with the greatest of ease and drop at the end of it with a little more knowledge than we started with and a little more appreciation for the little lives we have been given charge over. Then there are days when nothing is easy. We burn the toast, we spill the coffee, we leave for work without said coffee (only to realize 10 minutes into our commute that it’s sitting on the kitchen counter…), technology at the office isn’t working, we miss lunch and end up eating a bag of chips instead, and the whole drive home with mascara goop in the corner of our eyes, a wrinkled shirt and flat hair we think of our little people at home who can’t wait to greet us when we walk in the door. That is, until they see you, run to the other parent or child care provider and refuse to to even look at you, much less smile at you or welcome you home in any way. <sigh>

You spend the evening doing laundry, picking up snacks left all over the house, giving baths and then finally it’s time for bed. Yeah right. The battle of wills between a full grown adult and a toddler at bedtime should be what they make movies about, not WWII or the fall of the Roman Empire. Those little unreasonable, diabolical, sassy faced and mouthed little ones can give even the fiercest competitor a run for their money. But when their eyes finally close and they settle in next to you and they fall asleep, they are the most beautiful little angels in the universe. We parents are hopefully able to go sleep soon after and get ready for the next day, stirring once in a while to check on our sleeping cherubs and comment on how beautiful they are.

The guilt that plagues me as a mom of a NICU survivor is not more than or stronger than that of a mom of healthy from the start kiddos. But I will argue that it is different. The moments of guilt over whether or not I did enough or too much when I was pregnant or while she was in the NICU growing healthy lung tissue so she could breath on her own. The moments of wondering if I should be working with her more or harder or smarter or whatever to get her to catch up on her development that she had missed those first four months. The moments of pure joy when she does all the things they are supposed to at their age. The realization that she HAS caught up. Yes, maybe the talking isn’t coming as quickly as it may with other kids, but that’s just the thing, no one kid follows the “guidelines” exactly to a t. And while my daughter may not be saying a lot of words yet, or sentences, I can feel her taking it all in. Absorbing language and preparing herself for a deluge of talking right around the corner. Other kids at her age may have been saying “dog, cat, cookie…” but my daughter is waiting until she’s good and ready to start a discussion about music or movies, or her family or possibly why the squirrels in the neighborhood need us to focus on climate change a little bit more. My little one is saving her language skills for the important stuff.

So, I will enjoy the few days I have left before every other sentence uttered starts with “why?” and I will enjoy the game of trying to figure out what she wants from points and squeals. I will bask in the little moments where all she needs to say is “mama” when she reaches out for a hug, all the while knowing that her brain is gathering up the courage to unleash the verbal storm that is brewing. I tell everyone that this pandemic has been brutal for everyone other than Luna Bell and it remains true. She is making such huge strides and I’m excited to share the biggest one with you in the next few weeks.

Some days, as a parent, it doesn’t feel like you are doing anything right, and then out of the blue the biggest steps get made. The sun shines brighter, colors are brighter, progress is made and and everything is right. You remember to take the coffee you made to work, you get a lunch and the toast turns out perfect. You make it home with hair still looking fresh, make up in tact and your tiny angel-chid is still napping (we won’t talk about how she woke up at 3:30am ready to play and didn’t go back to sleep until long after I went to work) and you actually get to finish the blog post you started two weeks ago! Some days you have remember and save for the rainiest, cloudiest, bullshitty-ist days. Some days.

Mom Shaming

As moms, we question ourselves about a million times a day. Did I feed then enough, are they happy, bored, sad, confused, frustrated, getting ready to poop, already pooped, wet, sleepy, mad about teeth coming in, or just mad about not being verbal or mobile enough to make it clear to the neurotic adults in charge of keeping them alive what they want?!?! Wondering if we are using the right laundry detergent or lotion or diapers could keep us up every night if we hadn’t fallen asleep in a heap next to our little ones with the mascara from three days ago still on our lashes.

When we do get some time away from our little ones, we feel guilty that we aren’t with them to tend to their every little need. Whether that means we’re going to work or to the grocery store or the occasional hair or nail appointment or the all needed, super rare drinks with the girls, there is that nagging voice telling us that we should be at home with those little ones we grew and brought into the world and love more than anything-but need a tiny break from. Sometimes the voice we hear is our own, our mother’s, a mother in law or “society”. But when that voice is the voice of another mom, someone down in the trenches, someone probably dealing with the same day to day mom issues that we are, that is some straight up bullshit.

Comparing our kids to other kids around the same age is something we tell ourselves never to do, but we end up looking at those other kids and think; that one is taller or shorter, skinnier or rounder, walking or talking more and better than my kid. That one gave up the binky easier or never used one at all, that one has better motor skills at stacking blocks or rings. That one can climb better or higher and get down more easily. This one doesn’t cry at the doctor’s and my kiddo screams the second I set her on the exam table. That one eats fruits and vegetables better and doesn’t throw food on the floor and that one is just the most chill kid ever and mine just isn’t.

It’s great having friends or family with kids around Luna Bell’s age. I love that she has relationships with her cousins and is starting to get closer to her aunts and uncles and grandparents. And I love working with ladies who have children a little older than mine. They give me ideas on how to help Luna Bell with different things and also commiserate with me when things are just tough and they reassure me that this too shall pass. And I never feel like I’m trying to compare my kids to theirs.

Then there are “the others”. Those moms who, no matter their own age or the age of their kids, think that they have it all locked in. Those moms that have no filter when they’re pregnant and tell their horror stories to all first time moms and walk away leaving a panicked, sometimes crying pregnant woman in their wake. The moms ask a million invasive and rude questions about your pregnancy and then say “we’ll when I was pregnant…” or “my doctor says…” and “if you were younger/older or healthier or fatter or skinnier or taller or smaller, you wouldn’t have this or that problem or issue.” These are the moms that then question everything you do as a mom; “when is she going to sit up? When is he going to talk? Ya know, if you get her to give up the binky she’ll talk more. My child loves fruits and vegetables, you just have to keep trying. Is there something wrong with her, she doesn’t seem as advanced as my child. She should really try XYZ with him, that would help his become a nuclear physicist by the time he’s 10.”

To these nosy, intrusive, rude, clueless women-thanks, but no thanks. Your words of “concern” fall like lead balloons. They are hurtful and cause needless concern on the behalf of the mother you direct these comments to. Hearing someone ask if there is something wrong with a child because they aren’t doing everything exactly like their perfect little angel, is well anger inducing. It’s those comments that stand out above the “they are so cute or sweet or dress so stylish for a one year old” a year later when you aren’t sure if your child is doing all the things they should be.

In my previous post, I wrote about Luna Bell catching up. And by the time she was 15 months she had caught up on everything except eating (more on that later) and her physical therapist continually reminds me that she is on her own path and there is so much happening at that age that sometimes one thing or another has to take a back seat to something major happening. And guess what? Every kid is different. They all learn to walk and talk and do all the major things in their own time, but they learn them. And when they do, you can throw that video on Facebook and Instagram and tag that obnoxious mom and say “see?! My kid is also doing the thing that your kid is doing, and looks a hell of a lot cuter than yours does!”

Okay, maybe not. Maybe don’t tag them that is, but know that your kid definitely is looking waaay cuter than theirs! If you know they will see the post, you can revel in the joy that they will see your beautiful, perfect child doing that thing and that there is nothing wrong with your child like they speculated with all the expertise of a truck stop clinician.

To claim that this post wasn’t inspired by someone specific, would make me liar. And I’m sure all moms and dads reading this have one or two people in their lives who make derogatory comments about their children or assumptions about their development or health. I’m still working out what the best response to these people is. If anyone has any advise I welcome it! Or if you would just like to share your stories, this is a safe place to do so! Just remember, no mom shaming.

Catch Up

Life with a baby is never slow. There is something new ever yday; a new face made, a new sound, a new movement and a new aspect of their little personality that shines through. When a little baby is playing catch up after four months in the hospital, the seemingly small things to most parents are HUGE, monumental moments for NICU survivor parents. And our girl was no exception to this fact. A couple of months after she came home she began spitting up a lot. From one or two times a day to at the worst nine or ten times a day. We had her checked out by the GI doctor, her pediatrician, her pulmonologist and nutritionist. No one could come up with an answer to why she was doing this. It made going anywhere a struggle-packing extra burp cloths and wipes and outfits-and the poor little thing was miserable. It broke my heart and it kept us on edge all the time.

One of the absolute blessings of having a NICU survivor baby, was the support we received in the form of weekly, in home, Physical Therapy sessions. It was Luna Bell’s physical therapist that figured out what might be going on. When babies are born their ribcage is more box shaped, and over time and movement their ribs spread out to the shape we are familiar with. In doing so, the esophageal sphincter sets into place. Because Luna Bell had been so restricted in her movement, her ribs had not spread correctly yet. So, over a few months, Kevin did daily exercises with Luna Bell and her ribs finally spread out to their correct placement and the spitting up went from 10 times a day to zero times a day! Because she was not feeling great all these months, she basically refused to do anything we asked or encouraged her to do. Once she felt better though, we had a lot to catch up on, and she knew it, but she also has her own way of doing things! We worked with her on learning to sit up and lay down on her own, and after a few minutes of work, she was totally uninterested and had a very “let’s move on mom and dad” attitude. It was during this period that I learned something new about my little girl…She is sneaky!! During the day, while I was work, I would peek in on the monitor to see my little girl. I loved seeing her play with her little toys and hear her baby babble. And then, out of nowhere, she sat up. WHAT?!?!?! Ok, it was a new skill, not perfect movement, but she did it! About five minutes later she laid down on her own without just falling back, and then sat up again. My little girl was showing how like some she is; practicing things while no one watches until the skill is pretty good and then allowing others to watch. I was like that with piano and singing and writing and all the way back to riding a bike. I made my dad teach me during a rare day off in the middle of the week while the big kids in the neighborhood were at school so that they wouldn’t see me fail and fall a million times. And then I would practice while they were at school for the rest of the week until I could ride without falling, I could just miraculously ride a bike!

Luna Bell became determined to do all the things her body knew it should and could be doing. It was amazing to watch all the little things she was learning so quickly. As we neared her first birthday Luna bell had a few PT sessions centered around crawling, she was doing a modified army crawl, which pulled on her feeding tube site in her belly. Finally we did a session in front of the mirrors that are on our bedroom closet doors. She was doing what we asked as far as getting into a better position for crawling. We held her interest for a little while and then she was done. Later that evening she and I were playing in the living room and she saw a box in the kitchen. She got on all fours, lifted up her belly and proceeded to crawl the length of the living room and into the kitchen where she played with the box. I immediately praised her as tears welled up in my eyes. I sat stunned that my little baby had actually crawled. When Kevin came home I hit him with the amazing news and a few minutes later, she did it again. This time I was ready with my phone to preserve the moment with a video. It was like the sun had come out and all I could see was blue sky. Our little girl who had been forced to delay everything that should have come naturally in those first four months, was finally doing all the things we had asked her to at least try. She was definitely winning the game of catch up.

Mother’s Day

My “first” Mother’s Day, I found out that I was pregnant with Luna Bell. My first official Mother’s Day, I finally had my nearly 6 month old baby home from the hospital with me, and I still couldn’t believe that I was actually this beautiful girl’s mommy. I was filled with fear and the overwhelming feeling that it was going to take everything she and I had to get through her first year.

Fast forward to this, my second Mother’s Day. It was everything I could have hoped for. My daughter had been home for over a year, she was healthy and strong and was meeting all of her goals and those milestones that each child is supposed to meet. She had been walking for about two months and was now pretty much running. Her smile and laugh lights up a room and her energy is boundless. She keeps us running all day long until she finally allows us all to pass out each night.

Kevin and I have been through a lot in this past year. Navigating how to be partners and parents and keep some kind of balance. To be honest, we haven’t always we done a great job. Dealing with postpartum depression or panic and the hormonal roller coaster after bringing Luna Bell home did not give me a solid platform on which on make relationship decisions and I didn’t always voice my needs in the most productive way. I reached out to friends for advise and every single parent told me that the first year of their child’s life was the toughest year on their relationship or marriage. And they all prefaced that by saying they had healthy children that did not spend four months in the hospital and they couldn’t imagine how difficult that was on us as individuals and a couple.

Somehow, over the past year and even the week leading up to Mother’s Day, we had made the choice to stay together and to do something every day that gave one a reason to choose the other at the end of every day. And that is what we continue to do today.

I need to say that there is no one but Kevin I could imagine having a child with, going through the past 18 + months with, raising a child with or loving. There is a reason why it took me until I was 44 to get pregnant. There is no one else that I could love more, there is no one that could love or take care of me better, and there is no one that could love my daughter the way Kevin does. The way my little girl looks at her daddy is a constant reminder of why my life has taken the path it has and why I found Kevin along the way. His determination to help me raise Luna Bell to be confident and strong and kind and wise is something I am grateful for every day.

I learned a valuable lesson right before Mother’s Day. I learned that not only do I have the most incredible man in my life, I also have the most incredible friends. It is not my instinct to lean on my friends for support, but in a moment of need, I reached out to one of my friends who gave me the support I needed and a listening ear. He asked if I had reached out to anyone else in our close friend circle (I had not) and reminded me that they love me and are there for me. After a few days, he did the most incredible thing: he called a mandatory Zoom meeting (we’re all in different areas and we’re in the middle of a pandemic) of our group of friends. So on a Saturday morning, we showed up from our individual homes in various states of quarantine attire and hair styles and I poured out my heart. The tears that we shared, the love that was heaped upon me and the promises of “I will be there in 2 hours if you need me” were what I had needed for over a year and been too afraid to ask for. I felt relief and love and support and ready to fight another day. I cannot begin to express how grateful I am for these friends that are really more like family, how much I love them and how thankful I am to my sweet friend for calling a mandatory meeting and giving me an opportunity to be vulnerable and ask for help. I hope that if someone is reading this and you need support or help for just a listening ear, that you will reach out to a friend.

I began this post nearly three months ago now. I believe that a little girl waking up from her nap is what stopped the writing and working non-stop and a little girl who moves non-stop kept my laptop and writing at bay. Over these past weeks, my relationship with Kevin keeps getting stronger, as does our little girl. I know that I’m going to make mistakes as a mother, but I think that just acknowledging that already makes me a pretty good one. There is so much of our story to catch you up on, so stay tuned for the next post! And a VERY belated Mother’s Day to all you mom’s out there!

From the Darkness and to the Light

Recognizing that I was having a tough time with my hormones, my self image and my overall mental health was the first step to getting back into the light. Recognizing that my anger towards the forces that kept my little girl in the hospital for four months was real and tangible was a big thing. I had anger at myself; thinking that Luna Bell’s health was a direct result and punishment of all of my actions was a big one. Had all the mistakes I had made come back to haunt me? Did Kevin subconsciously blame me for it and that’s why he was pulling away from me? And the questions, comments and accusations from people who really didn’t matter to me, but had Kevin’s ear, rang in my ears. “Oh, is Luna sick because you were older when you got pregnant?” “Glad I was young when I had my baby so I didn’t have to go through anything like that.” “Oh yeah, my friend’s baby was in the NICU too…for like 3 days, but same kind of thing.” “Oh yeah, you’re Kevin’s baby mama. Didn’t think he would ever have kids. Way to lock that down! I mean he’d be a real asshole to leave now right?” “So it’s potentially a genetic thing? Your side?” If I could express exactly how things like this felt, it would be something along the lines of having your insides put through a meat grinder. And the thought that maybe Kevin thought these things too was more than I could take.

Somehow, through everything, Kevin and I started to find our way back to each other. It was a slow process, many conversations, fights and sleepless nights. But we were making it work. The love was always there, but our lives had changed drastically and we had to figure out how our relationship had to change as well. The dynamics of a relationship where it’s just two people in love and excited about everything they want to do in the future to the dynamics of two people still totally in love and excited for the future, but now there is a brand new human in the mix. We can’t just leave her to go on a date night and we can’t leave her behind while we go to work or on a vacation. It’s now always going to be a question of what’s good for Luna Bell. And that is amazing and wonderful, but can be a real speed bump in a relationship. I wish I had a magic spell to cast on all new parents and us to make this whole process easier, but I don’t. It takes work. And compromise and understanding and respect of the others feeling and needs. I think a year later we are still trying to figure that out, but the thing is we are trying. Trying to have respect, understanding and some insight into what the other person needs and let that guide us and our decisions. I miss the days of it just being me and Kevin sometimes, but I wouldn’t give up the amazing and rewarding experience of being a mother for anything.

And to you who are quick to criticize and question parents who have kids with health issues or especially had a rough time in the beginning; the kindest suggestion I have for you is to mind your own business, keep your thoughts to yourselves, and try to have a little respect for those parents in so much pain and agony. My slightly less kind suggestion would be to drop dead. Trust me, you don’t what to hear my harshest suggestion.

So here we were. It was summer, our little girl was trying so hard to learn all of the things that she couldn’t while in the hospital and just get stronger and healthier every day. The struggle was unimaginable, and sometimes discouraging; but she was home. That was the thing we had hoped for, for so long, and it was time to actually enjoy it. We were all trying to heal and adjust and find our way from the darkness and into the light.

After The Storm

After going back to work and dividing my time between work; and trying to be everything to everyone there, and home; and trying to be be best mom and girlfriend I could be, I was running on empty. For months I had been running between hospital, work, home, repeat, that I had completely forgotten about myself. I hadn’t been sleeping, or doing any kind of self care at all. This seemed to include sleep as well. I was emotionally and physically exhausted and trying to keep things together and I feared that I was failing. I looked in the mirror and didn’t recognized myself. Who was this woman with dark luggage under her eyes, a still protruding round-ish belly and pain in her back all the way to her big toes? I felt tired and gross all the time, and anxious. Like my heart was pounding in my throat all the time and I didn’t know how to calm it. Kevin and I were struggling to find a balance and keep our relationship on track and it felt like nothing we did for each other was right or worked or was enough. After multiple blow ups and some rather serious panic attacks for both of us, we sought some counseling for us individually and together.

Finding the right therapist is tricky and while ours helped us to a point, we got stuck over some issues and weren’t able to find resolve or peace with them, but we’re able to find compromise between ourselves and promised to work on things together. But trusts had been broken and words had been said that cannot he taken back. And that was going to take longer to heal than I ever imagined. What was wrong with us? Did everyone have this tough of a time after they had their first child?

Turns out that the answer is yes! I put out a post on Facebook asking for stories or comments on how it affected relationships the first year of a child’s life. Women mostly replied but a few men replied as well and all confirmed that the first year after their first baby was born was the hardest year of their relationships. There are a million books to “guide” you through the first few years of your child’s life (most of these just make you feel like a bad parent when your child doesn’t meet EVERY milestone exactly on time), but there are few on how having a baby, especially a preterm baby who spent 4 months in the hospital, takes a toll on mom and dad. And we were trying to find our own way to heal.

Kevin seemed to be living his best life, getting in shape and healthy and spending time with family and friends, shutting me out of most of it. While I felt I was sitting in the dark, afraid that my fear and anxiety was going to take over and I was never going to see the sun again. I felt horrible about myself-my thinning hair (it had been falling out in what seemed to be handfuls-something they forget to tell you about what happened AFTER you have a baby) was one of the toughest things to manage. I had gone from long, blond, super healthy beach waves, to thin, dull, lifeless hair that I finally cut into a bob to give it a fresh start. My hairstylist and friend, Amanda talked me through it, got me amazing products and gave me the tools to take control of at least one of the things on my plate.

Due to our opposite schedules so that one of us was always with the baby, I didn’t find time to go to the gym very often and my body still wasn’t where I wanted it to be. I felt like my body had been blown up and the hit by a car and left in a ditch. Why was I feeling so awful about everything when I finally had my baby girl home with me?

Everything that the “typical” mom goes through seems to be right after the baby is born. The grieving that you are no longer carrying your baby in your belly. The struggle to breastfeed or pump (pumping was something I did not have an issue with!), the hormonal roller coaster that you ride as your hormones try to normalize. I didn’t really do any of those things because I was busy worrying that my daughter actually couldn’t breath on her own. I was busy trying to just heal my c section scar and and didn’t have time to acknowledge that my hormones were at 11, while my daughter’s lungs struggled to work, and I wondered if she was ever coming home. I didn’t have time for petty people and their even pettier whining and their selfishness. I needed something to be stable for 5 minutes. I needed to find some security that someday things will be “ok”. I surveyed the wreckage around me and it looked like a town that had been hit by a hurricane. I had to start cleaning up what was left after the storm.

Three Weeks

After Luna Bell was born, I took about seven weeks off; partially to recover from the C section and mostly to spend every moment I could at the hospital with my baby. At some point, her homecoming date was so uncertain, I was afraid that I was going to use up all my maternity leave time and not have any available when she actually came home, so I went back to work. Between the time I had saved and the time that I accrued over the next 3 months, I had about 3 weeks available to take off, saving about 20 hours for taking time off for doctors appointments and the occasional needed day off. So now that Luna Bell was home, I was on the clock. Only three weeks to try to get her into a little bit of a schedule, get her used to being home, us getting used to her being home, and hopefully do everything I could to make things easier for Kevin while he stayed home with her every day.

Let me just say, that the American system or should I say, lack thereof, for maternity and paternity leave is thisclose to criminal. You hear of women taking off huge amounts of time after their babies are born and think that is the way it should be for all new moms, but sadly that isn’t the case. Some companies offer amazing maternity leave packages, some women take short term disability for extra time, some file FMLA and get paid a fraction of what they normal earn, but most of us hoard our PTO, and fortunately I also had EIB (Extended Illness Benefits) that I could draw from. But unfortunately I was only going to have 3 weeks with my daughter once she got home. The fact that EVERY developed country in the world has amazing maternity/paternity benefits so that moms and dads can take care of their new babies and each other and themselves at such a crucial time and America can’t seem to get it together and do what is right for families is just unreal. Why is it that the politicians that want to “do” for Americans can’t seem to win over the politicians that want to “do” for corporations. Why the hell do we keep screwing ourselves over? If every new mom and dad were able to take off even 4 months after a new baby comes into the family without worrying about losing their job or losing pay or losing their benefits and just focus on bonding with their new child, establishing a “schedule” and let mom heal, what an amazing thing that would be. So, I’m begging all Americans to think about this when you elect your local representatives and the President in November. There has been a clear option in the last presidential election and in the one coming up, and somehow not everyone sees it, even though he is offering to make all of our lives easier. Here’s my political view; #FeeltheBern #Bernie2020

During the three weeks I had to spend at home with my little girl, we visited with family, not in a hospital room, but in their homes and our home. She and I took naps together, we played and watched “Friends” together. I swear that she recognized the theme song from “Friends” from all the times we watched it while I was pregnant. And then, just like that, three weeks was over. It was a Sunday night and I had to go back to work the next day. We had spent part of the day with Kevin’s brother, Derek and his girlfriend, Sarah and their sweet little boy, Ryan. Ryan and Luna Bell are obsessed with each other, something that has continued to this day! Ryan, Derek and Kevin were playing with Luna Bell in the bedroom and Sarah and I were talking in the living room. Sarah asked how I was feeling about going back to work and I burst into tears. I couldn’t imagine not being at home with her and the impending back to work day was weighing so heavy on my heart.

After Derek, Sarah and Ryan left, the rest of the day was a complete shitshow. I went to sleep next to Luna Bell and Kevin angry that the night before one of the most difficult days for me was spent in such a frustrating way. I was crying at the thought of going to work the next day and then the gratefulness of the fact that my daughter was finally home came bursting through and I had to just be happy about that. I had to set aside the anger and frustration once again so that my daughter didn’t feel that energy from me. She was still fragile and recovering and getting used to her new normal too, and she didn’t need that from me. So, tomorrow would begin another new phase in this journey, I was not prepared at all, but I was thankful for the three weeks. #

Fast Forward

Since it’s been MONTHS since I’ve had time to write, I’m going to fast forward things a bit. Luna Bell went off the C-pap and onto “high flow” soon after being moved to the less critical NICU. And one morning, when nurse went into her room and the high flow nasal cannula was off her nose for the millionth time that day and probably had been off for a while, they left it off, then tested her back on the high flow and her oxygen levels were still perfect, so one glorious night, they took her off the air support and we finally got to see my beautiful girl’s face, clear of respiratory support for the first time. It was then that they decided to move her to the “medical unit”. She was there for a week or so before they said, let’s get her ready to go home. I listened carefully to EVERYTHING, and we started getting ourselves mentally ready for our little girl to come home.

The reality of Luna Bell actually coming home to live with us, for us to take care of her, ALL the time, was almost overwhelming. Don’t get me wrong, the excitement was off the charts, but the idea of bringing home our little girl to live with ya 24/7 365 was a lot to get our heads around. But we buckled down and got things in place and soon we had a meeting with doctors and decided that our girl was coming home on March 15th, 3 days before she was to turn 4 months. She would still be on a feeding tube, and she would need lots of check ups with Pulmnonolgy as well as in home Physical Therapy to help her make up for what she had missed learning to do naturally over the past 4 months in a hospital bed.

The big day came and we left the hospital looking over our shoulders to see if anyone was chasing us to say “wait! We made a mistake! She’s not ready to go home yet!” But we made it to the car, got her and al of her stuff in the car and drove home more carefully than I’ve ever driven before. I kept looking in the rear view mirror at Kevin and our miracle baby, Luna Bell, and tried not to cry. It was finally happening, we were finally going home as a family. It was everything I had dreamed of for nearly a year now, and especially the past 4 months.

The fear that I’m sure all new parents feel when they took their newborn home seemed to be on 11 for us. She had made it this far, would one or both of us do something stupid to send her back to the hospital or even worse?

We arrived at home and Kevin played his guitar for her-something he had wanted to do for 4 months. I got her things all set up in our room so she would be all cozy. After taking pictures of her and holding her and showing her outside, we finally all went to sleep that night. Luna Bell slept in her Dock a Tot between us and we woke up many times in the night to make sure she was ok. That she was breathing. That she was comfortable. Each time we would catch each other’s eye and breath and whisper “ I can’t believe she’s finally home. I’m so happy!”

Our world had completely changed once again. Nearly a year before, my pregnancy was about to begin. And now, our beautiful, perfect girl was home with us. She was ours. We could hold her anytime we wanted. We could take her places with us. We didn’t have to go “visit” our daughter anymore. She was home. Life was good and how it was meant to be. But now, to catch up on all the things we had missed, if felt like we needed to push fast forward. .