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.

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.




I mean it!


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!


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.

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.


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.


After a few days of living in a very small room on the 6th floor of Seattle Children’s Hospital, it began to feel somewhat normal. It felt a little like college; you move into your room and have less space than you could have ever imagined, your bed is uncomfortable and you have a communal bathroom that you have to wait in line for, and it all feels so foreign and you don’t know where anything is and then after a couple of days it’s like you have never lived anywhere else. We had quickly become friendly with the couple in the room next door to us, we knew all of the unit coordinators that let us into the NICU a dozen times a day, and other parents started to look familiar as we gave each other knowing looks as we walked in and out of the NICU each morning. We would get up and showered and go down to Luna Bell’s room in time for the daily rounding of at least 4 doctors (attending and residents), a respiratory therapist, a nutritionist, a pharmacist, and Luna Bell’s nurse of the day. It was a well choreographed run down of her stats from the day and night before, the results of any tests that were done, what they were hoping for that day, changes to respiratory support or medication or feeds, and then an opportunity for Kevin and I to ask questions. Being a part of this was intimidating, but probably the most sure I felt all day. Because there was a bit of news, both good and bad, and then a plan. I thrive on having a plan, even if it doesn’t go exactly as planned.

Spending the days sitting next to her bed; falling asleep in a chair or standing up, ordering food to be delivered to the NICU floor so we didn’t have to be far from her, pumping breast milk, talking to the nurses, doctors, and social workers who helped us navigate everything that comes with having a sick baby. Every time my little girl woke up or moved or when it was time to change her diaper and take her vitals, we were there. Changing her diaper was pretty much the only thing we could do for her, so we jumped at the chance. At this point, I hadn’t even held my daughter in my arms yet. I would hold her tiny hand. Put my hand on her legs or chest or head, but I still hadn’t held her like every other mother had been able to do from the moment their babies were born. My arms ached for her. After carrying her everywhere for 34 weeks, not being able to even pick her up was killing me.

After a week of Kevin and I spending the nights together in the hospital, it was time for us to give up our room with the larger bed to a mother who had a c-section as well and a couple who wanted to be close to their newborn. Kevin went home that weekend and I moved to a smaller room. I would be alone that night. After spending the day with our little girl, Kevin helped me get settled in my new little room. After many hugs and kisses he made his way home. I stayed with Luna Bell until around 11pm and then made my way back to my bed. I was starving-as most breast feeding or pumping woman are, pretty much all of the time- so I hit up the vending machine near the parent rooms and made myself a little bed picnic. As I ate and texted Kevin and tried to find something distracting on the small tv in my room, the emotions and reality of the past week began to hit me. First a little bit, then like a freight train. I began to cry like I had never cried before. I cried for the emotion of finally becoming a mother at the age of nearly 45, the fear that I was pushing down so that I could remain calm around my daughter, the pain that comes with having a c-section, very swollen legs and feet and not keeping off my feet like I should have been, the uncertainty that I was feeling every time a doctor or nurse would say the word “months”. I was terrified. My daughter needed to get well. She needed her lungs to heal so she could breath on her own. She needed all of these things and I couldn’t do anything about it, except hold her hand, talk to her, sing to her and love her. My heart was breaking and I was breaking a little too. As the sobs tore at my body and the tears spilled down my cheeks onto the bed picnic I had made for myself, I let it all go. I let it go for now, because tomorrow I was going to get up and do it all again. I was going to hear about how well she was doing, or not and what the plan was for the next 24 hours. I was going to sit in that room and give Luna Bell everything I had so that she would have the strength to heal and I was going to be back in this room at the end of the day and try to heal and rest and sleep. This new life was hitting me hard and real, but it was what we had to do for now. This was the NICU life.

What About My Baby?

There is something I’ve noticed with more intensity on Facebook and Instagram over the past year; gratefulness to God for taking care of someone’s child.

Babies that are born early and with issues or potential issues and spend a day or two or maybe a week or two in the hospital or children that was either injured or diagnosed with something like cancer or another illness are prayed for by parents, grandparents, friends, and fellow church members. And somehow, 7 or 8 times out of 10 there are posts of how great god is and how he helped their child be healthy and come home to their family sooner than expected.

But then there are the rest of us. The parents-to-be who get scary news while mom is pregnant and all they can do is wait and see what happens when the baby makes his or her arrival. The mom’s and dad’s who have children in the NICU or ICU. They are on heart monitors or respiratory support, or medication or all the above. The parents who spend every waking and sleeping moment doing everything they can to help their child; getting the best care for their child, holding them when possible, talking to them, even praying, hoping for the moment the doctor says you can take them home. But somehow, all of the praying, hoping, perfect combination of nurses, doctors, treatment, just doesn’t seem to work.

Am I not doing this right? Are the other parents of the hundreds of children at Seattle Children’s Hospital not doing something right? Were we supposed to hold our hands a certain way, pray in specific direction, eat a special food, not laugh, not cry, not speak, only speak and think with positivity? TELL ME WHAT TO DO!!!!!

Are our children the forgotten, the not worthy? Are we as parents being taught a lesson or being tried for some crime? Why my baby? Why us?

My Mom is one of the best people I know. Honestly. She is kind, a good mom, a good wife, the definition of what a good Christ like person is. Void of judgment for others, and genuinely willing to do things for people no matter what. She’s a hospital Chaplain for god’s sake. I’ve always said that if anyone can get god to answer a prayer in the affirmative, it’s her. So when we found out Luna Bell was going to have issues, Mom started praying. And she never stopped. She prayed for lots of different things: Luna Bell to be healthy, me to be healthy, Kevin to have strength to support his girls, the doctors and nurses to have the wisdom to treat Luna Bell, Kevin and I to have strength and wisdom to be there for our daughter and to question things when they didn’t seem right, and again for our tiny little girl to be strong, to fight, to get healthy and grow and to be ok so she could come home.

So, when I see a post of the greatness of god and his choice to heal a child by some miracle, I bristle. I wonder why their kid and not mine. Why did god pick their baby to heal so quickly and not mine? Is this really divine intervention or just a case of right diagnosis, right treatment, maybe just not as sick as my daughter. As time goes on, I remind myself that not every baby or child has the same conditions, same diagnosis, same battle. Not every family is put in a place to learn to appreciate the little things, sometimes the very little things. Not every baby has parents who are strong enough to deal with an extended hospital stay, or multiple tries at coming off respiratory support or heart monitoring or medication without success. And many babies just aren’t as tough as my girl. She came out pissed that she couldn’t breath on her own and until she came off support, those tubes and hoses were her nemesis. She was a superhero every day and continues to be. She has taught me what it means to be determined, strong, focused, and patient. We were given a very special little girl and she is loved more than any other baby ever has been, we’re sure. As you will read in upcoming entries, our miracle was not a quick trip home; but a baby girl who knows she can do anything she sets her mind to, a mom and dad that got the opportunity to learn a lot about themselves, and fix a few things, so they could be the best parents for Luna Bell, and a family pulled together and grateful for the magic that occurs when a very special human joins the human race.

In the future, as Luna Bell decides what she wants in life and who she wants to be and do, I will be standing by her, cheering her on and saying to the world “What about my baby!!!”

Something To Be Thankful For

The morning after. Waking up sore from my c section of about 32 hours earlier, and the the special torture that is a hospital bed, but determined to prove how well I was doing so that I could get out of the hospital and to my daughter’s side in her room 10 minutes down the street. After growing her and carrying her with me for the last 34 weeks, the fact that she was so little, and so brand new and already so far away from me was almost more than I could bear.

Soon a nurse came in to take my vitals, check my incision and help me to the bathroom. I began pumping the breastmilk I was beginning to produce and ordered some breakfast. I texted Kevin to see if he was awake and how Luna Bell was doing and fortunately he was awake and could give me an update. 

Our little girl had made it through the night and she was doing well under the circumstances. Seattle Children’s had set Kevin up with a room where I would be able to join him and we would be able to stay at the hospital for at least a few nights. He said they were doing ok, but they were anxious for me to be there with them.

The doctor on shift came to my room after a while and said that if I continued to do well, they could probably discharge me later that afternoon. To say I was disappointed would be a gross understatement, but what could I do? About 45 minutes later, one of my doctors came to my room. She said it looked like I was doing really well, so she was going to try to get me out of there by noon! She understood that my daughter needed me and I needed to be with her and there was no good reason to make either of us wait.

I let Kevin know the good news and when my mom and step dad got to my room the plan was made for them to take me to Children’s when I was discharged and they could meet Luna Bell then. In some ways it was the longest morning ever, but getting me ready to go seemed to take all my focus and strength, so the time went quickly.

Fast forward a few hours. We got to Children’s where we went through security and I was given a “Parents” badge and lanyard. When I put it on, I had no idea what a staple this would be in my life. A given, something to check to make sure I had with me at all times along with keys, phone and wallet. Kevin met us so that he could take us to Luna Bell’s room. Seeing him and feeling his arms around me and his hand holding mine was exactly what I needed. As anxious as I was to see my little girl, I was scared. What would the room be like? Would it be noisy from all the monitors and the ventilator? Would she be awake or sedated? Would it matter to her if I was there? Would I cry? Would she? Could she?

My legs and feet were swollen and painful, and my incision was somewhat painful, but I felt the strength of 10 men and the speed of a cheetah as I rushed to see Luna Bell.

We checked in a the front desk of the NICU who made sure we could go back to her room. Again, something new to us that would soon become a daily habit like putting on shoes. We rushed back and entered a large room filled with monitors and a large ventilator and two nurses attending to my very small baby in a warming bed. There, in the midst of all the noise and lights and organized chaos was my baby girl. 4 lbs 12 oz, 12.5 inches long. She had tubes and wires and monitors covering most of her body. She had a tube in her mouth so that she could breath, and it was taped to her face so that it didn’t move. She was asleep due to the sedative and the ventilator was causing her torso to move up and down in a forced motion, not the gentle rise and fall that should be happening. I stood there for a moment; afraid to touch her. Afraid to breath. Afraid. Two lovely nurses, Kristen and Bella, encouraged me to touch her, to talk to her. And explained what everything attached to her was. I gently put my hand on her head, as it was one of the few places she didn’t have something attached and told her I was there. Sang to her. Told her everything was going to be ok. 

But was it?

The day is a blur after that. But at some point, doctors; the attending and a few residents came to Luna Bell’s room to talk to Kevin and I about what was to happen next. While the details are fuzzy now, I remember one of the residents saying “ Over the next few months”. What? Months? No, my girl will be home by Christmas. We’re not going to be here months. I got angry. Doesn’t this woman know who my kid is? Who I am? We’re strong, tough, determined! Luna Bell isn’t that sick, we’ll defy all the odds and she’ll be home soon and won’t this doctor feel stupid. After they left I asked Kevin what he thought. He too was thrown by the use of the word “months” and like me, he was angry that this doctor, or this group of doctors, didn’t seem to know who my kid was. She was a little superhero and if she made it this far, she would continue to kick butt and take names and show all of us what she was made of. 

I mentioned a nurse by the name of Bella earlier. She would become an integral part of Luna Bell’s story. And on this first day, we had no idea how much we would come to rely on her, but her smile, soft voice and easy demeanor drew us all in and put us at ease. 

The next day was my birthday. I was 45 now. I was 45 with a two day old in the NICU. As we went through the day, Kevin convinced me to go home for a few hours. Get a few more things to make our stay comfortable and we’d have Mac n’ Cheese for my birthday dinner. The drive away from the hospital towards home seemed all wrong. How could I be leaving my girl behind? When we got home, I set about getting some things together to take back to the hospital. Clean pants, underwear, socks and shirts. Some toiletries and the piece de resistance; my cozy, fuzzy, purple bath robe that Kevin had bought for me the year before. I changed my clothes and put the robe on top of everything and laid on my bed for the first time since giving birth. We have a magic bed. You can raise the head and the legs and I did both. Kevin went to purchase Beecher’s Mac n’ Cheese and I laid on my glorious bed and responded to Happy Birthday texts and Facebook messages until I fell asleep for a while. 

After Mac n’ Cheese was consumed, we headed back to the hospital. A bit refreshed and renewed and ready for the next few days. After a long visit with Luna Bell, we headed to our room and tried to sleep.

This was the first night that I had a dream that would become a regular dream like an episodic television show. I dreamed that Luna Bell and I were laying in a large warming bed; face to face. Everything that she was attached to, I was too. I was viewing this from above, but feeling everything the me I saw was feeling. In his sleep, Kevin put his arm around me and I panicked. “NO! You’re going to pull my tubes out!” I woke up with a start and startled Kevin in the process. He help my hand as I told him my dream and assured me that I was ok and Luna Bell was too. But the image stuck with me the rest of the night. 

The next day was somewhat calm, more of the same. Standing or sitting with Luna Bell, pumping, eating, talking to doctors and social workers and genetic counselors and having blood drawn for testing. Seeing Luna Bell’s dark eyes open for a little bit, and hoping that she recognized us- or at least our voices. We sang to her and talked to her and I think Kevin read a book to her. The reality of what was happening was terrifying, but we really had no choice but to trust the doctors and nurses and know that they were doing what was best for her. 

Another sleep in the hospital and we woke up to Thanksgiving Day. We had some options for the day. We could spend the whole day at the hospital. We could go visit Kevin’s mom, sister, niece and brother, and we were invited to his cousin and aunt’s family dinner. Kevin was having a hard time convincing me to leave Luna Bell for a few hours but he made me realize that we needed to see people. We needed the hugs and encouragement. We needed to laugh. So we left the hospital after giving the nurses strict instruction to call or page us if anything happened. We were met with hugs and smiles and encouragement and food and a warm home. Kevin was right. We had needed that more than we knew. And when we did that thing that nearly every family does at the Thanksgiving Dinner table; I said I was thankful for family. For Kevin. For Luna Bell. And for modern medicine and that we lived so close to one of the best Children’s Hospitals in the nation. The fear I felt inside for the coming days, weeks, months was masked, I hope, by the optimistic tone in my voice and the smile on my face. I was so scared that next Thanksgiving my daughter wouldn’t be with us, and that maybe she wouldn’t make it through the next day. But for today, I needed to be thankful for being her mommy. I needed to be thankful for Kevin being by my side. I needed to focus on that something to be thankful for. 

24 Hours

The first day of our little girl’s life was very eventful. It began at 1:33am with Luna Bell being born, but not being able to breath on her own she was intubated and rushed to the NICU. She had chest tubes to drain the fluid from around her lungs and IV’s and monitors on every part of her 4 lbs 15 oz, 12.6 inch body. Kevin spent the night with her, curled up in a chair in a small NICU room, keeping an eye on our little girl. He texted me with updates, while I learned how to pump breastmilk, and texted friends and family to let them know Luna Bell had arrived. As they monitored her and did tests, the NICU doctors had many discussions with the neonatologists at Seattle Children’s Hospital, and it was decided that Luna Bell would be moved to Children’s via ambulance. A very serious doctor and Kevin came to my room to let me know what they wanted to do, and get my consent. Of course I gave it after they tried to explain the treatment they had planned for her, but my exhausted mind and body that hadn’t rested since the afternoon before, couldn’t seem to grasp what they were telling me.

Because I had just had a c-section not even 12 hours earlier, I couldn’t go with her. It had already been decided weeks ago, that anywhere she had to go, Kevin would go with her and I would follow as soon as I could, but we reiterated that to each other, and Kevin said that of course he would go with her. And as Kevin and I watched the nearly 2 hour process of getting Luna Bell ready to be moved, I was trying to be strong on the outside, but inside I was falling apart. My daughter was hooked up to monitors and IV’s, she had a tube down her throat with air being pushed into her tiny, fragile lungs to keep her alive. She had tubes in the sides of her chest to relieve the fluid that had formed around them in utero, and she was medicated into sedation to keep her comfortable and calm. And each of those monitors and tubes and IV’s had to be switched over to a mobile incubator so she could go on the first car ride of her life. One that they needed to make in about 10 minutes, because of the generator that powered the incubator and monitors and most importantly the ventilator keeping my daughter alive. The plans they had for her at Children’s were serious. They planned to put her on ECMO. And as I watched the amazing transport team get her ready, I was forced to acknowledge that this may be the last time I would see my Luna Bell, my miracle baby, alive.

I sat in a wheel chair, Kevin sat in a chair that a very kind and helpful nurse got for him. He drank tea, I drank some ice water and we hardly spoke. What could either of us say? We were watching our little girl get ready for a trip that she might not survive, and if she did, she would be put on a machine that could save her life, or just be a rest stop on the way to the end. I was forcing myself to be positive, and while he may have been doing the same, Kevin came across confident that she would survive the ambulance ride and the ECMO would help her lungs heal and give her the best chance of survival, because she absolutely would survive and come home with us.

The nurse came over to tell us that the transport team was getting very close to having Luna Bell ready for the trip. Kevin and I held hands and kissed and he reassured me everything was going to be ok, that he would be there every step of the way and that he would let me know how things are going as soon as there was something to report. We went over to the transport incubator as they completed switching over the power, and stated they needed to go now. I told my little girl I loved her, for what might be the last time, kissed Kevin and they were gone.

I sat in the hallway, trying not to cry as a really kind nurse asked if she could take me back to my room.

Once I was back in my room, the enormity of the situation finally hit me. I cried. I cried that my little girl was suffering like this, that she might not make it, that if she did make it through the first 24 hours she would probably have a long road of healing in front of her, that I hadn’t even held her yet, that Kevin had to do this alone, that I had to do this alone, and that I still hadn’t slept.

About 10 minutes after Kevin left with Luna Bell, he texted me that they had made it to Children’s safely. And about 15 minutes after that, he called me to tell me that they weren’t going to do ECMO after all. Our girl was sick, but not that sick. They were going to re-intubate her so that the tube was more stable and they were putting together a plan for her. By the time I got there to see her the next day, they should have a better idea of the kind of care she would need.

Knowing that she was safely at Children’t Hospital, that Kevin was with her and that there literally was nothing I could do from my own hospital bed, I finally took a nap. It was short nap, soon interrupted by a kind, well meaning nurse who came in with water, medicine, and a little help pumping my breastmilk. This was the first I had slept in about 24 hours, but somehow it seemed impossible to sleep, when down the street, my daughter was struggling to stay alive.

Soon my mom and step-dad arrived. And no matter how old I get, there are times when I just want my mom. After a visit and catching them up on the latest, they headed for the hotel room. I was left alone again, trying to stay focused on getting myself physically ready to leave the hospital the next day, but wishing that I was with Luna Bell and Kevin. I finally was feeling the day. The pain of the surgery, the exhaustion of being awake for so long, feeling hungry and a little nauseous all at the same time, and longing to hold my daughter but also wishing that I could sleep forever.

At Seattle Children’s Hospital, they were taking amazing care of not only Luna Bell, but Kevin as well. They had set him up with a room just a floor up from our baby, and I would be able to join him there the next day and stay there for at least a few nights. Kevin’s cousin showed up to see Luna Bell and take Kevin out for a much needed dinner and a little breath of fresh air. Once Kevin was back with Luna Bell he called to let me know she was doing ok and that he couldn’t wait for me to be there the next day. As difficult as it was to be away from my daughter and Kevin, knowing that they were together was a huge comfort.

I fell asleep for a little while and woke up to a text coming through my phone. Luna Bell was doing well, and Kevin was visiting her after he had a little sleep as well. He told me he loved me and to go back to sleep, things were ok. I agreed to try to get some more sleep, but before I did, I looked at the time. 1:33am. She had made it the first 24 hours.