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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.

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. .

This Is 46

So today is my birthday. I’m 46. I’ve seen four and half decades. The 70’s where I watched “Charlie’s Angels” with my aunt and hoped to be a effortlessly beautiful as Farrah Fawcett. The 80’s where all I could do is dream of being a singer like Joan Jett or the ladies of Heart or even Cyndi Lauper. The 90’s where I wore baggy jeans and flannel shirts trying to act like I didn’t care about anything-not conforming not doing what my parents expected…but ending up exactly what all parents expected their daughter to be: wife, good citizen and being as average as possible. The 00’s where I had no clue what I was doing, but I wasn’t going to stay in one spot long enough to get bored, so I moved three times, kept busy with friends and adventures. And then the 10’s where at 40 I moved once again, a couple of years later I got a divorce, started a relationship with a man who is 20 years my junior, about as opposite what anyone could imagine for me, and then at 44 got surprising pregnant and had a beautiful baby girl two days before I turned 45.

That all brings us to one year later, and my birthday once again. The only thing I know for sure in life, is that it is unpredictable, it is painful, it is joyful, it is full of opportunities to make changes as necessary and just when you think you know your immediate path, a tree or boulder or landmine blocks that path and you have to figure out a way to either navigate the obstacle, rebuild the path, or realize that an alternate is the better way. No matter what I’ve been through, I can honestly say that I don’t regret anything. Do I wish I would or wouldn’t have done a few things in my life? Sure. But I truly believe that if I would change one thing in my past, I may not have all the amazing things I have now.

Becoming a mom at almost 45 brings along it own set of struggles. Maybe my body would have recovered more quickly when I was 25, or even 35. Maybe I wouldn’t be so completely exhausted like I am some days after a full day of work, full night with the baby and then back to work. And then again, from EVERYTHING I read, EVERY mom feels exactly the same way. Exhausted, sometimes frustrated, insecure about their post-baby body, and clueless on what to do when each new stage of their child’s development or personality comes around. So, I’m grateful for becoming a mom at 45. I remember my 20’s self and she was obsessively clean, organized and yes, controlling. I think that if I had been a mom and the house wasn’t up to clean standard and if the baby didn’t do every little thing he or she was supposed to be doing according to the books I would have been anxious and stressed and if the baby didn’t get out of his or her pajamas all day, I would have felt like a failure. Now, especially being the mom of a NICU survivor, I’m ecstatic over every little thing Luna Bell does that shows growth and change. If she doesn’t get out of her pajamas during the day, who cares? Is she fed? Does she have a clean diaper? Did she play AND take a nap today? Yes to any or all? Complete win! And the mess that seems to follow babies and their parents around…couldn’t care less. I don’t think I’ve completed a meal, at least not while it was still hot or even warm, since Luna Bell came home…and I’m ok with that. And why? Because my baby girl is healthy. She’s home and I get to be her mom.

I was recently called old, by someone young enough to be my daughter. At first it stung a little, and then I considered the source. She just doesn’t have a clue. I’ve lived a lot in these 46 years. I’ve seen things, I’ve done things, I’ve worked hard to survive and keep myself and whoever my family was at that time, fed and housed and healthy. I’ve had adventures. I saw all the good bands. I watched history take place in real time. And any wrinkle or line I may have on my face, has been earned. Lines around my mouth from smiling and laughing a lot. Lines in my forehead from getting through a lot of pain; physical and emotional. And my WTF lines from watching events and people around me, are getting deep. Every year that I have reached another birthday is a victory.

So here I am. The past year has been the toughest year of my life, but I survived. My daughter survived, my relationship survived, and the three of us are stronger than ever. This year has proven to me that I am stronger than I knew. I can be a really good mom and partner. I’ve learned a lot about myself and dealt with things that I’ve been carrying around for years…maybe even decades. I’m in good health. I’ve getting my body back into a shape that I’m proud of, even if it isn’t exactly how I looked before I got pregnant. And my relationship with the love of my life is thriving. My daughter reminds me every day, how lucky we are to be healthy and home. I’m grateful for my 46 years. I’m grateful for the pain and the joy and the trials, because all of those things have made me who I am-and I kinda like that person. I’m more loved than I have ever been. I’m happier than I’ve ever been. And while I know there is always room for improvement, I think I’m a pretty good person. I’m also at a point where I don’t put up with a lot of crap in my life either. There isn’t room for people who disrespect my life, my family and my relationship. There isn’t room for negativity. There is only room for love, joy and positivity. This next year is going to be a big one. More growth in my relationship. More growth for my little girl and more growth for myself. But right now, as I sit in a quiet living room before my family wakes up, this is 46.

Spoiler Alert

If you want to see how my story plays out and don’t want to know where we are with Luna Bell today, the one year anniversary of her birth, then please don’t ready any further.

Seriously.

Stop

Reading!

I mean it!

Stop!

Can’t stop if you wanted to? I have your attention? You want to know all the details of today? Ok, but you were warned!

ONE YEAR LATER

As I sit here writing this, the house is quiet, my daughter and Kevin are sound asleep and I’m listening to the silence. I set an alarm tonight because I wanted to wake up and remember everything that happened a year ago and take in everything as it is tonight.

A year ago I was in a operating room and my daughter was being born. She wasn’t breathing. We were all so scared and in awe and had no idea what might happen next. Tonight, my year old daughter is sleeping here with us at home, unaware of the momentous nature of this exact moment. After months of not knowing if she would ever be well enough to come home, she was. And after months of us thinking that maybe she would never catch up to do all the things she needed to be doing by a year, she did. And after wondering if she was going to be ok-emotionally, she is. She is the happiest, most beautiful little girl. She is crawling, pulling herself up to stand- a lot- and with help taking a couple of steps. She has two bottom teeth almost all the way in and is working on one on the top. She learned to sit up and lay down by herself-at first with a little direction and then by practicing in her crib when she thought no one was looking (I was watching from work on the monitor app on my phone) and she is hitting all the goals we have been setting for her.

Again, I need to explain how happy she is! She giggles and smiles at everything and now, nearly everyone after she warms up to them. She loves her Dr. Martens that we bought her for her birthday. She loves toys and to start games of peek a boo. Of all the ways the beginning of our story could have ended, this is too good to be true. We thought that some things would come more quickly than then did, but with a baby-timelines are a myth. And some of the things she is doing, seemed like only a dream a few months ago.

I remember how protective I became during my pregnancy. Protective of my belly and the little one growing there. I became protective of who I allowed around me. And once she was born I became even more protective and cautious. I only want good, kind, loving people with good energy around her. And I want her to know how loved she is every day.

So here we are, one year later. My heart is full, and I couldn’t be more proud to be Luna Bell’s mommy. The adventure continues, but today is all about celebrating the miracle that is Luna Bell one year later.

Real World

On December 18th, Luna Bell was extubated and put on a c-pap machine to pressurize the air and help her breath easily. It was exciting, but frustrating keeping that little mask on her very tiny face and dealing with all the fluctuations in her breathing rate and O2 saturation…all things that new mom’s and dad’s shouldn’t have to be thinking about with their month old baby.

She started out doing good. Then she was not doing so good and then she was flat out struggling. Her respiratory rate was high as she worked so hard for every breath and her heart rate was also high due to all that work and in turn she wasn’t growing at all. The thing that was key for Luna Bell was that we needed her lungs to grow so that she would have fresh healthy lung tissue to outgrow all the damaged lung tissue from they hydrops. She also had something called pulmonary lymphangiectasia which was also causing extra difficulties with her breathing. https://rarediseases.info.nih.gov/diseases/9900/congenital-pulmonary-lymphangiectasia

One of the signs that Luna Bell was not ready for this extubation was the fact that for hours afterwards she was inconsolable. She cried most likely due to oxygen deprivation and also because even at one month old, she knew what she could and couldn’t do and what she was and wasn’t ready for, and she wasn’t ready for this.

Part of being a mom with a child in the NICU is trying to keep a positive attitude and never let your child feel the concern and fear that you are feeling down deep. And that means hiding that from the nurses, doctors and often your partner because you can’t bear to think the worst and right now the worst I could think of was that Luna Bell would have to be reintubated. We got through Christmas and then had a rough night on New Year’s Eve-which was the day I chose to go back to work.

Before I started having problems with my pregnancy, I had about 10 weeks of Paid Time Off (PTO) and Extended Illness Benefit (EIB) hours available to me- and I was going to keep gaining about 8 hours a paycheck up until my delivery date. By the end of the year, I had exhausted about 7 weeks and decided that I better go back to work so that I would have maternity leave available once Luna Bell came home. The first day back to work broke my heart. I just wanted to be with my daughter, but I had to do what I had to do. After a day at work, I headed to Seattle Children’s to finish out a very long day by seeing my daughter one last time in 2018. She was not doing great. Her respiratory rate was high, she wasn’t happy and her primary nurse, Bella didn’t say it to me, but she was worried.

I had chosen a very bad week to go back to work. By Wednesday, January 2, 2019 Luna Bell was really struggling. While at the hospital that night she spiked a fever due to a minor infection that had started in one of her IV lines and she was miserable. It was this night that I finally said “When is my kid going to catch a break?” The nurse on Luna Bell that night was new to us, but she was amazing. She helped me help Luna Bell to get comfortable and finally around midnight her fever broke and she finally fell asleep. The nurse told me that the next morning she was going to really advocate for my daughter with the doctors-and that the best thing for Luna Bell may be to reintubate her. I agreed, while screaming “NOOOOO!!” inside, and finally went home to eat something, get about 3 hours of sleep and go back to work.

The next day the nurse called me to let me know that the doctors were looking at all the options and that by the end of the day we should have a decision on what was going to be best for my girl. I thanked her for everything, finished pumping breastmilk and went off to work.

By the end of the day the medical staff came up with a plan: The only way to give Luna Bell a chance to rest her body and not work so hard on breathing, was to reintubate her. They were going to turn up the volume and calories on her feeding and get her to grow. This was the best chance for her to grow some new, healthy, strong lung tissue so that she would be ready to be extubated the next time.

The decision to put a breathing tube back into your child’s airway and see her face all taped up again is not an easy one. But when you know it’s the only way she is ever going to be breathing on her own someday, you have a make the difficult decisions.

In 10 days, she gained over a pound. In two weeks nearly two, and she had grown a couple of inches. After 3 weeks, on January 22nd, Luna Bell was extubated for what would be the last time. She was happy to have the tube out of her throat, she was calm, she was relaxed and happy to have mommy and daddy hold her and we almost got her to smile. This was the time and growth she needed to be ready to conquer the rest of the battles ahead of her. This was one step closer to getting her home. Her time at Seattle Children’s was now at two months four days. Our time with her was precious every day. With being back at work, Kevin spent the days with her until he had to go to work in the evening and I would go to work then to the hospital, then home between 10-11:30 depending on how good Luna Bell was doing, to do at least one load of laundry or clean up the kitchen or just fall down and eat something before passing out. I was exhausted all the time, I was stuck in a bad situation at work, where my co worker was constantly out of the office and I had to cover for her, and all I wanted to do was sleep for maybe eight hours at a time. But it was not to be. You do what you have to do to take care of your life, and now your helpless baby, no matter how exhausted you are. And this level of exhaustion, this crazy schedule, and this constant feeling of being on high alert was not just a dream-no, nightmare-this was real life.

HELP!

I’m not good at asking for help, I never have been. Back to childhood, I would say “NO, I GOT IT!” even if I really didn’t. Being 5′ tall, I’ve learned how to use counters, tables, chairs, anything that would make me a little taller to reach whatever I needed to reach, I would rarely ask for help.

Going through heart surgery, moves, job changes or loss, my divorce, I never really asked for help. If someone really pushed, I might say; “If you’re going to do or get *insert activity or food item here* and don’t mind, please do or get me the same. If it’s no bother, please. You totally don’t have to…” This past year, I have realized what a weakness not allowing myself to be a little weak or vulnerable really is.

The staff at Seattle Children’s was amazing in every way. And oddly enough they became our surrogate family while Luna Bell was in the hospital. They were the only people I really saw for the first 6 weeks of her life. I think I felt comfortable talking to the nurses and doctors about our concerns and fears and even the tiny improvements Luna Bell was making, because this was their job. They were getting paid to take care of our girl, they were getting paid for the time that they listened to us talk and somehow I didn’t feel guilty about asking a million questions or verbalizing the fear that I was feeling when it came to my little girl.

When friends would text me and ask how things were going, I would try to keep my answers as light as possible. “She’s doing pretty good. Still having some issues with her breathing, but she’s growing and doing ok.” For whatever reason, I had been tight lipped when it came to telling anyone while I was pregnant that we suspected that she was going to have some problems. I told my mom and dad, Kevin’s mom and a couple of co workers since I had so many doctors appointments at the end. So anything that was happening was kind of a surprise to everyone. Part of me now wishes that I had confided in a few close friends, that I had leaned on them for encouragement and support a little so that Kevin wasn’t taking on the full load of dealing with his own feelings on the upcoming birth of our daughter and the unknown path that lay before us, and supporting me as well. I wish that I was the person who was able to send up a flare and ask for help. But for whatever reason, I just have a block when it comes to sharing a struggle and asking for help.

Over the months that Luna Bell was in the hospital there were moments when all I wanted was my best friends, a bottle of wine, and to laugh harder than I had in months. I wanted to be silly, free, and to forget for just a moment that my daughter was struggling to grow and breath. And now that she is home, there are still moments that I would love to just have a day to relax, do some self care, and blow off some steam. But there is that part of me that stops me-the part that doesn’t want to leave my daughter when I could actually be spending time with her. The part that doesn’t want to ask Kevin to stay with her when he takes care of her all day during the week, and part of me that is too afraid to ask for a friend or another mom to give up time with her family to go have a drink and commiserate about how tough it is to be a working mom, partner, and woman or just talk about pop culture, catch up on the latest gossip and laugh.

I’ve always been introverted, but over the past few years, leaving my solid crew of friends in Portland and struggling to find new friends to spend time with in Seattle, it’s been a little tough. This is not to say that I haven’t made friends here that I really cherish, but when you have a really tight crew that have been through everything together and then they aren’t around-it’s tough. I left Portland, a marriage, started a new, unconventional relationship and then miraculously got pregnant. All things that have really changed my life; the way I’m able to travel easily or not, the ability to go out on a Saturday night at a moments notice or out for happy hour after work, and the freedom to do whatever I want whenever. I wouldn’t change a thing, I just wish there was a road map, an event planner, something to help new moms navigate learn how to not lose themselves while still being everything and everyone to a tiny little person. And why is it so hard to make friends easily after a certain age?

Through all of this rambling, and thank you for hanging on here with me, the one thing I’m trying to get to is this:

How do I ask for help?

How, after nearly 46 years of “ No! I got this!” do I finally learn to ask for help? And not even for help necessarily. How do I express that I need a friend? How do I ask someone to take out an hour or two to go to dinner, get our nails done, have coffee or a drink. Why is this so goddamn hard for me? I know if my closest friends were geographically closer, that they would be there for me as much as possible, but still, in the darkest days of Luna Bell’s hospital stay, the most I could muster was a text asking for good thoughts, positive, healing juju when things were tough or she was getting ready to go through another transition.

As Luna Bell’s first birthday gets closer, the emotions that I was feeling last year and through our adventure in the NICU are starting to formulate and erupt on a daily basis. I can barely talk to people about her without getting emotional because we have come so far, but the realities of the past year are still so fresh. I look back on the moments that defined it and wish that I would have held up the white flag once or twice and said “HELP!”

17 Years

The morning of November 27th I heard the news that I had been longing to hear. If she continued to have a good day, and if I was ready, I would get to hold my daughter later that day. My heart jumped at the thought, and as I felt my heart jump, I realized the days date and couldn’t believe the timing.

Eighteen years before I had been diagnosed with a congenital heart condition that had gone undetected until I was 26 years old. It was serious enough that if I had gotten pregnant, it would have killed me to continue the pregnancy. After a non invasive heart catheter procedure, medication and time, the effects of the problem had left some damage and it was decided that I would have open heart surgery to fix the damage. This would be the only way I would ever be able to have children, and the best way to have a full, healthy life. I turned 28 and one week later, on November 27, 2001, I had open heart surgery. The surgery was successful and after a few months of healing I was given the green light to get pregnant. It never happened until I got pregnant with Luna Bell, and here I was, 17 years after that surgery, getting ready to hold my beautiful girl for the first time.

The day went well, and late that afternoon everyone was ready to help me hold my daughter. This was going to be quite the operation. We were going to need at least 3 people to help move her and all of her tubes from her little warming bed to my arms. They advised me that I should definitely go to the bathroom before, so that I could hold her for a long time. This was not going to be a daily thing, so they encouraged me to hold her for as long as I wanted to. They changed her diaper, and started arranging all the tubes and monitors and wires so they could be moved. I went to the bathroom and got comfortable. Kevin videoed the operation and every time I watch it, I am amazed at how difficult it was to move my little girl. I sat on the recliner in the room and held my arms out for Luna Bell. They arranged pillows on my lap and arms so she would have a wide, solid surface to lay, and as they placed her in my arms, it was not only the best feeling in the world, but also the most familiar. She was close to me again. The last time we had been this close was the night she was born…that was nine days earlier. The nurses got her all comfortable and took some pictures of Kevin, Luna Bell and I. Kevin took more pictures and then we just sat.

Usually I am like most digitally plugged in American’s. If I’m sitting, I need something to keep my attention. Even if I’m watching a movie or tv or waiting for an appointment or at work, on hold for more than three minutes, I’m reaching for my phone. But for three and a half hours, I sat; holding my daughter for the first time. Looking at every inch of her face and playing with her fingers. She looked into my eyes and I like to think she was comforted knowing that her mommy was holding her. She and I took a nap together, I talked to her, told her stories about her daddy and I, and her family and all the friends she had yet to meet. She attempted to listen while in and out of naps.

Kevin finally went to get something to eat and when he came back I finally admitted that I may have to go to the bathroom, and possibly move around a little. For the past nine days my legs and feet had been very swollen and my c-section incision was less than comfortable, but for three and a half hours, nothing hurt. Nothing was uncomfortable, everything was perfect and right and amazing, because I had finally held my little Luna Bell. When the nurses put her back into bed, she cried-but not the normal cry of a newborn. Due to her still being intubated, she couldn’t make a sound; but her face got red, her mouth was open and she had tears coming out of her eyes. It was heartbreaking. It took us quite a while to help her settle down, but we finally did and she fell asleep. As traumatic as it was to see her so upset, I left her room that night filled with so much joy that I had finally held my daughter. Kevin and I went back to my room before he headed back home for the night. He told me that the NICU unit coordinator had asked how long I thought I might be staying because there were parents from out of town that were waiting for a room. I didn’t want to think about going home yet and leaving Luna Bell at night, but she had been pretty stable and we had never been called to her room in the middle of the night. And Kevin reminded me of how comfortable and warm our bed was at home and that it might really help my own recovery. So we decided that I would go home in two days.

Kevin said good night and headed home. I made myself another bed picnic as I had missed having dinner. I replayed every moment of the three and a half hours that I held Luna Bell. I had finally checked off the “hold newborn baby” box of the new mother checklist. As I fell asleep, I thought about how important it was that I had that heart surgery. And how that one decision impacted this night 17 years later.