These Days

I had great intentions of writing all during September for NICU Awareness month. Y'all I just couldn't.  I got stuck. I tried to process it all, but I can't fit a year-long story into 30 days (surprise!). I still can't process it all.  So, I'll bite off pieces I can chew and share my life along the way. 

I've had some strange days recently. Days of frustration and exhaustion from being in constant pain. Maybe I never talked about that. Long story short, I injured my back on Father's Day and have been in fairly bad pain since then. After lots of treatment and work to heal, I'm improving. A little over a week ago I had a really good, almost pain-free day and then I promptly sprained my ankle. I sure wish you could have all been there to see me, I was helping out with a friends baby shower, arms full of serving pieces and I just rolled my ankle and fell. I don't really know what happened, but I ended up laying in a front yard, across the street from my friend's house. Sounds like a different kind of story, but alas, I had only had water. Anyway, I lay there angry and in pain, writhing in a stranger's grass. I pumped my fists in the air asking God "really?! Why?!" It was comical, I'm sure!  I can't help but laugh at those moments, but needless to say I was really disappointed to have new pain. I still am, but I'm healing. I had a pretty rough night Sunday night. I was hurt and restless about something and just couldn't sleep much at all. Monday morning came early and I woke up with a knot in my stomach. I wished I could just crawl back in bed, turn my brain off and hibernate. I had planned to visit my parents and Memaw for a few days since I was finally able to get around myself and with Kai. I was tired and just felt off, but was already all packed and ready to go, so I fought the urge to hide and got moving. I loaded up the rest of our bags and grabbed Kai and we were off. Kai was unhappy to be in the car and there was a lot of traffic. It was just stressful.

I ran a couple of errands and as I put Kai in the carseat he started coughing. It's still pretty common for him to still choked up and cough throughout the day, so I paused and watched. This time was different and I could tell he was really struggling. I moved swiftly to get him out of the carseat, but it was too late. I patted his back, straightened him up, laid him down, and did everything I could think of to help, but he was still gasping and gurgling. He looked at me so desperately and I couldn't help him, which is absolutely one of the worst feelings in the world. I eventually had to begin CPR thrusts, as I have many times before. After a few rounds he finally got a breath. Dewy with sweat, he panted loudly and melted into my arms. There is nothing quite like the adrenaline in a moment like that. Every time I feel like I'm going to lose it and like I would literally do anything in my power to help him.  I don't know how long he struggled, but I never do. Each time he chokes it feels like an eternity. I stood there in the Babies R Us parking lot, holding him tight and listening as his breaths slowly got longer and deeper and returned to normal pace. Exhausted, I leaned against my car for a while, sobbing and cradling my baby. This never gets easier. There's always a fear in the back of my mind that this will be the time I can't help him. And when my baby boy chokes in the car seat that's supposed to keep him safe, well that does a number on my mind. These moments simultaneously make me want to run away and hide, and never want to leave the house again. I try to enjoy every day with Kai not to let fear rule me, but some days it's a real and raw struggle to carry on without being overcome by the fear, the what if. Though these events are fewer and farther between, they are still our reality. People see this plump, happy baby and think all is well. While he has come so far and is absolutely a miracle (isn't every baby, though, really!?), we are still in the thick of it and I feel like I can't let my guard down.

Several loved ones have asked if there's something I can do to heal from all that has happened and I wish I knew. I'm still trying to figure out how reconcile the joy and pain of it all and make those scary moments easier to deal with. I'm in counseling and I'm talking with loved ones and sharing our story... that's a start. We want healing to be quick, but like a wound sometimes it's itchy, uncomfortable and awkward before the healing is complete. Even after the healing, a scar remains as a reminder of the brokenness that once was. We will be ok, but this season of life will still bear the scar of trauma. 

I remember being on bed rest in December, almost a year ago now, and feeling that maybe the Lord wanted me to slow down and wanted to get my attention. My physical pain and all that we have been through with Kai have kept me at this slower pace and added deeper layers of struggle and seeking in my heart. This year has been a magnifying glass to my soul. I can see more of who I am and what I believe now than I ever have before. Some of it is beautiful and some of it ugly, but it all shows my deep and profound need for a Savior.. 

Is this all part of His plan? I don't know. It's hard to say that such painful and scary days are His intention. I often wonder and wrestle over questions like this for myself and for others. Though I don't know the plan, I know that these trials and struggles are surely part of our story and He can bring beauty and healing through it. We all have a story, don't we? Success and struggle, healing and hurt, gains and losses, joy and pain,... it's all part of the human experience. Suffering can make us fearful and defensive and it's easy to let the pain and the darkest days define us. In fact, the enemy wants to nothing more than to keep us victimized, angry and stuck. But Jesus came to give us life. He came to set us free, to give us joy and hope and peace, and those are the things I'm fighting for when it seems like the enemy wants nothing more than to bring me down. But if we stay stuck in the pain, we miss the beauty of the healing. 

First Days

Nothing could have prepared me for those long and painful days After Kai was born. I was still so scared to love him, but I was so worried and almost obsessed with him. I felt like I had tried so hard, but had failed him. I wrestled with guilt and anger and fear. I began pumping faithfully to provide for him, and didn't have much to show for it. I struggled to eat, or do anything for myself because it felt selfish when he was fighting so hard. 

I was amazed at how he was so strong and so fragile all at once. At almost 27 weeks gestation, he was wholly formed- every organ system was in place, but having to work when they should still be in the safe and growing in the nurturing womb. 

His skin was see through and they told us that every touch was painful and irritating, but the more firm pressure we could apply, the better it would feel for him. His bed was temperature and humidity controlled and covered with a blanket to keep it dark. We washed and scrubbed and sanitized to open the little door on his isolette and place a firm hand on his body. Each time we opened the door it changed his environment and we balanced the knowledge that our presence and touch was healing for him, but it was also painful and exhausting. All of the "normal" ways we think of comforting our baby flew out the window. No cuddles, no patting, no rubbing. We learned to only engage one sensory experience at a time. If we were touching him, it was better not to talk. If we were talking, it was better that his bed was covered and not too much light was coming in. Of course sometimes I found myself whispering to him through the whole touch time. I wanted him to know I was there. The amazing thing was that the nurses would tell us that his heart rate and breathing would change the moment we walked into the room. He could sense or smell us long before we ever reached his side. So I sat there, day and and day out, as he slept, knowing that my presence was a comfort. 

At a few days old, I heard him cry for the first time... like the fast, high pitched whimper of a new puppy. I promptly stuck my phone in the little armhole to record it. I still listen to it in amazement that this tiny little person has grown into such a plump healthy boy. 

The first couple of weeks we got lots of scary news. Kai had bleeding in his brain, and then he got very sick. They started antibiotics right away and we later found out he had pneumonia. All I could think of was that I gave it to him. I put my phone in his bed to hear his voice and I put germs in his safe little cocoon. I was terrified that he would not be strong enough to fight it and it was my fault. Fear and grief can wreak havoc on the mind.

I was still weak and getting back my stamina and energy from being on bed rest, but my mom and JC took me up to the hospital as often as they could. When I wasn't there, he was all I thought about. I pumped and worried, pumped and worried in a continuous cycle. 

Kai required blood transfusions,a lot of medication, and special procedures in those early days. The doctor kindly explained them to me and often asked for permission to proceed. The nurse would hand over a document that explained the risks and benefits and I was supposed to be the adult who signed and said it was ok to poke and prod on my tiny baby and give him the strangest sounding medications. I didn't feel equipped to handle these decisions. I would look over the forms but the words didn't make sense. It was like daydream reading, when you realize you've read a few pages and have no idea what they said, except it felt very high stakes. I didn't know anything, so if the doctor told me Kai needed something I had to trust him. I was supposed to sign and give permission, yet I felt I had no choice in the matter at all. I often take responsibility for things that aren't really even mine to worry about, so it was the most unnerving feeling to have a child that I couldn't care for. I was completely dependent on other people to keep him safe, healthy and alive. 

We didn't get to hold him for over a week, and the first time we did it was just to lift him and his little blanket bundle off of his bed. And there we stood for our first family picture, with our little 2 lb. miracle baby. 

He was the youngest and sickest baby in the NICU for quite some time. Lots of times there was an "all hands on deck" situation, trying to get his oxygen and heart rate stable. Alarms went off and lights flashed and I looked at these numbers on a screen that seemed to hold so much power. I wrestled with what ifs every day. It took a while, but I finally had to rest in the fact that all of these machines sustained Kai, but it was God who gave him life. 

Ohh Baby Boy

I have wanted to be a mom for as long as I can remember, but I was never really sure it would happen. On Monday, August 17, 2015, I dreamed that I had a baby boy. I woke up and took a pregnancy test, the first of many tests which showed two little pink lines. And so began the journey of motherhood. I was nervous and almost didn't feel like it was real until a few weeks later when the doctor confirmed that Baby Li was due in April 2016.

I felt guarded from the beginning, but I never knew why. I knew it would be hard and that parenting would change our lives forever. I was under no illusions of dreamy pinterest motherhood. Thanks to my sisters and lots of friends with babies, I knew having a child was going to be amazing and also the most difficult thing I'll ever do. Like many other moms out there, I was tired and nauseated for the first trimester and spent a lot of time resting, napping, slowing down. Pre-pregnancy I never napped and I stayed busy most of the time, but looking back this was one way the Lord prepared me for the coming days. Everyone was excited about our little surprise and friends and family immediately gave some great name ideas... Earl Li (ummm, not funny), Ugg Li, Bear Li, Bubba Li, Belle Li and the crowd favorite, Brock Li, which became baby's official name. Everything was normal with me and baby Broccoli, until our appointment on December 3. This was the day we found out we were having a boy (although I knew in my heart all along- a mother's intuition is real y'all), and we also got the news that I was dilating and may have to go on bed rest if things didn't improve. A week later I was feeling weird and went in for a checkup, and was immediately put in the hospital. 

In the hospital got to hear sweet Broccoli's heartbeat every morning and night and had lots of sonograms to check his progress. We knew he would come early, but no one knew how early. I felt him move so much and he was so full of life. He looked great developmentally, and yet I still felt so guarded. I loved him, but I was so scared to really love him with that all-in, mama kind of love. The unknown of what we would face and what he would go through was sometimes just more than I could bear. I wrestled with fear, frustration, boredom, anxiety and to be honest I just wondered if it would be easier to try again. I thought maybe the Lord was going to take this baby and it would be better that way. I have so many friends who have lost babies in and out of the womb and I know it's not easier. That sounds horrible and selfish and wretched to admit that I even thought that. I hate even writing the words out, admitting that my own fear and frailty caused me to feel that self involved, but this is part of my journey and something I have cried and wrestled over many times. Now it's part of my healing and so I choose to be honest. Of course, now I look at this beautiful boy and I'm so thankful that the Lord knew better. In my weakness He is strong.

After two long days of contractions, sweet Kai was born at 26 weeks and 6 days gestation. He was 2 lbs. and 3 oz., 14.5 inches long with a full head of hair. There was a room full of nurses, respiratory therapists, doctors and techs there to "catch the baby." I'll tell you, nothing feels as glamorous as birthing a child, albeit a tiny one, in front of an audience of 10+ strangers, literally lined up at the foot of the bed. Kai didn't make any sound and they immediately whisked him away to a little isolette in the room where they began life-sustaining measures. After he was stable, they wheeled him by, hooked up to cords and a ventilator, wrapped in a plastic bag to maintain his body temperature and gave me a brief introduction to my baby boy. I saw him only for a moment. One surreal, unforgettable moment, and life has never been the same.

NICU Awareness Month

This is NICU awareness month and I have decided to post all month long about various facets of our NICU experience. I hope it will be inspiring and educational.

So why do I feel compelled to share this all month long? Because this experience of having a preemie changed me forever. Nothing in life could have prepared me for what we went through, and our experience was much milder than some of the sweet families we walked this road with. Because I am in awe these babies who just come too soon or have illnesses and literally fight every day to live. Because there are amazing, miracles that happen in the NICU every day, and wonderful people who help make them happen. Because so many of you loved and prayed us through this time and I want to share now what I wasn't able to share then. And selfishly, because I hope this will help bring healing to some of the areas of my heart that still feel fragmented from this rocky road.

Keep an eye out for my upcoming posts and feel free to ask questions or give me ideas about the NICU that you'd like to know about.

Another week down

Baby boy is 25 weeks today! It's been a week since my treatments and everything went well. Ok, let's be honest, it was a couple of miserable days, but all was successful and worth it to strengthen little man. He's still growing and doing well. 

Through this process I'm realizing just how weak I am. I really don't handle pain well, especially blood draws, wah wah wah!! With all sorts of cords and tubes hooked up to me, for a mere 24 hours, I was pretty cranky and uncomfortable. I was counting down the hours and wishing it was over. I couldn't help but think of sweet ones and who have suffered this kind of torture over months and months of cancer and sickness. I'd like to think if I was faced with that, I would rise to the occasion and be strong (or maybe just bear through it) but I was so so ready for those two days to be over. 

It's also been a challenging week for me mentally. Sometimes I feel selfish for being tired of being here or just wanting to get up and do things myself. I know I'm here for a purpose and I want to do everything I can to keep little man warm and cozy, but I still struggle to be content right here. I'm just not a lay-in-bed-all-day kinda girl so this process can be very trying. I know there is a balance of caring for my emotions and mental health as I care for little man in this way, after all, right now my job is just to incubate; and while that's so very important, I feel like I'm losing my sense of self a bit. I've heard a lot of friends say they feel this way learning to care for their children, so I'm not alone. I'm still just working through those feelings and allowing myself to grieve, cry, feel frustrated, etc., knowing that it's ok to struggle with this. 

I've always felt capable and independent, but this process forces me to depend on people in ways that I never have. I have to depend on my husband to do things that I want to do myself and to accept that everyone even though he does them differently than I would, it's still ok. Ok, true confession, this "acceptance" is a work in progress. Anyway, I'm learning to depend on family and friends for support and encouragement, when I'm much more comfortable being the helper. I've had so many sweet friends reach out and visit and I'm very thankful because I know I need folks in my corner! This is another place where learning the balance comes into play. 

I've been reading the Psalms a lot and I'm constantly reminded of these things: 

My baby's days are in the Lords hands, not mine. I can do my part to lay here, drink water, eat veggies, etc., but at the end of the day I can't bear the burden of the what if's. The Lord isn't surprised by where we are right now. He loves and little man and has a plan and purpose for his life. I'm confident that it's also part of the plan for my life, though I'm a little less enthusiastic to accept that par.

Also, I mentioned contentment before and I'm reminded that I've struggled with contentment in many areas of my life before. This isn't a new battle for me and I have often been reminded that if I search for satisfaction in anything outside of Christ, I will always be left wanting. So, even though '"normal life" is so much more appealing than this, I know I would still be unsatisfied and would be looking for something else to satisfy. 

So, here I lay. Learning to let go. Learning to trust. Learning to depend. And I know one day I will look back on these days and see all of the ways He is growing me. 

What are the difficult seasons of your life that have grown you the most?