On Hope and Humility, Jealousy, Grace, and the In Between

Buckle up kiddies... this will likely be a long one. 

I started this blog for several reasons. One being that I've had a blog off and on for years, and it felt like the right time to start writing again. Another, because writing is one of the ways that I really process my thoughts and emotions and I think it will be healthy to get this all out of my heart. But, one of the main reasons that I wanted to write about our story is to help other families who may be faced with similar situations, to be a beacon of light in stressful times.

When we found out Beastie had a cleft, I scoured the internet and read nearly every blog I could. I wanted to see what babies looked like before and after repairs. I wanted to hear how parents dealt with the sadness, the uncertainty, the surgeries. I wanted some idea of what our future might look like, so I read and read. It felt mostly good and hopeful. I was able to start to wrap my mind around what was to come. Ha... as always, little did I know.

When Beast was born early, one of our amazing primary nurses, Lauren, who adopted us early on, told me in no uncertain terms to stay off the internet. I occasionally ignored her, and when I did, I was sorry for it. The statistics on preemies, micropreemies especially, are terrifying. Largely because neonatology is a relatively new field, and technology is constantly changing. The scientific sites were scary, and the personal stories... well, they seemed to fall into one of two camps. Either, a mama who was in the NICU for a week and now feels she's an expert. Or, the mama who's babe has been through absolutely every single thing and is still trekking on. At the time, I couldn't deal with either scenario, so I didn't. And while we updated friends and family on Facebook as our journey progressed, I couldn't bear to say much on any public sites. What if things went wrong? It was hard enough telling those close to us what was going on when Beast was very sick or near death, but strangers? Too much. So, I waited. And now, nearly a year after this whole mess started, I want to really share our story. I feel I can now, because if you are a cleft mama, or a micro mama, or just a regular mama, I can say, with relative confidence, that as scary at this story gets, it has a happy ending. 

Anyway, before I really get into the meat of Beast's story, I need to say a few things about our journey as a whole. I want this blog to be open and honest, but part of that honestly means hearing about the struggles, the warts, the anger. 

 

Being a NICU mama, a micropreemie mama, a cleft mama has brought a sharp dichotomy to my life. I am simultaneously so grateful for where we are, and so jealous of where we could have been. It's a tough road to walk. I'll preface this all by saying also, that if you are, or believe you are one of the friends I reference in this post, please know I honestly am not angry with you in any way. None of this is or was your fault. It all has to do with me processing my own feelings. It's just life. Sometimes it lifts you up. Sometimes it kicks you in the balls. 

We are of the age that many of our friends were pregnant around the same time we were. And, since we waited to announce our pregnancy publicly, after finding about Beast's cleft and subsequently waiting on amnio results, I had to sit by and watch as several friends and acquaintances shared their joyous announcements, their gender reveals, their general happiness. That was tough, for sure, but not nearly as hard as what was to come. After Beast was born early, we knew five people who had preemies within a few months. Beast was the smallest. She was the sickest. And it was painfully hard for me to see other preemies doing so much better than she was. We had lots of friends have term babies around that time too, and that was painful too, but somehow not as bad. Listening to people complain about their week long NICU stay when we were on month three was hard. Seeing babies get to go home who were younger than Beast was hard. Watching mamas get to hold their babies the day after they were born, while I had to wait almost three weeks was hard. Seeing people easily breastfeed and their babies gain tons of rolls, super tough. Hearing people lament how tough it was to have their baby get a cold while I had to watch mine get chest compressions was horrible. To be quite frank, I unfollowed a lot of people on Facebook because I just couldn't deal with it. 

We've been home from the NICU for almost seven months, far longer than the four months we spent there. Some days, as I watch my little Beast smile, laugh and roll all over the place, and the hospital feels like a lifetime away. Other days, as I worry about a random rash or whether her spazzy movements are indicative of something worse than baby uncoordination, it feels like I'm right back in it. Occupying this in between space is quite hard, and I'm really not sure how to deal with it, so I'm writing, to try to wrap my little brain around these big feelings. 

I am simultaneously so grateful, and so damn angry. I've dealt with plenty of shit in my life, far more than the majority of people I know, and I am so mad for having to handle one more difficult thing. But I'm so grateful that it wasn't worse. Beast never had brain bleeds, or NEC, or heart problems. She doesn't have cancer. We have great insurance, and, both a blessing and a curse, she was tiny enough to qualify for Medicaid to help pay for her $1.6 million dollar hospital stay, and continuing therapies. I look on Instagram and Facebook groups and see people who have it far worse, and I thank God that we haven't had to deal with more problems. But... isn't there always a but? But, then I see people complaining about how tough their third trimester is, how big they are, and I get irritated. I hear moms talking about how scary and horrible it was to see their perfectly healthy, term baby get their vaccines and I roll my eyes. I read posts from women talking about their nine day NICU stay, giving advice on how to survive being in the NICU like they are experts, and and I want to throw every single one of my 116 days in that hospital in their face. My basic, monkey brain gets super irate and wants to flip tables. And then my logical side comes back, and reminds me that problems are problems, not matter how big or how small they may seem to an outsider. And that even my problems, which feel huge, are nothing compared to so many others. We only did 116 days, not 300. Beast has to have a cosmetic surgery, not open heart. We have access to world class health care, while if she and I had been in another place, or another time, both of us would be dead. And so I settle back in the in between. 

I spend my days with my beautiful baby, so grateful that I get to stay home with her, and yet I still worry that I'm not doing enough. Not spending enough time with her. Or the right kind of time. Not reading to her enough. Not doing her structured therapies enough. Not letting her explore on her own enough. I worry that I'm spoiling her. That she'll feel abandoned. I worry that we won't bond as closely because she won't breastfeed. Because I wasn't at the hospital 24/7. Because she spent hours alone in her little hospital crib. I am so proud of all of the milestones she's already accomplished. I feel like she is really smart and curious. I wait for the other shoe to drop. For the cerebral palsy or neurological delays to show up. I fret that worrying about that makes me feel like an asshole because though I would love her and support her, and do everything for her no matter what the future brings, I don't really want to deal with one more thing. I look back at pictures of her at birth, and read the journal that I kept in the NICU and weep, so, so thankful for how far she has come. I look at her oxygen tanks sitting on the floor next to me, and the growth chart that she's not even hitting, and the surgeries to come and weep, scared for what is to be. And so I settle back in the in between. 

I'm so glad that she's home. That I don't have to battle with traffic for a few hours every day just to see my baby. That she's healthy enough to be here, with me and her dad and the cats. I also miss the NICU terribly. I miss the nurses and being able to visit with them daily. Having a routine. Having built in, very over-qualified baby sitters. I miss having countless doctors around to ask questions and get immediate clarification. I miss knowing all the stats, her daily weight, length, temps, food intake, diapers. I don't miss the beeps and alarms, and the leap of my heart rate whenever I heard a Brady alarm go off, even when it was faint enough that I knew it was halfway across the unit. I still have a moment of panic when I see the hospital's phone number flash on my caller id, even when she's sitting happily in my lap. I miss all the support, but I'm glad to be in my own home, all together as a family. So back to the in between. 

I want to shout from the rooftops our story to give light and hope to that mom and dad who just gave birth to a tiny human too early. Who are looking at their baby, so fragile and wondering if they can survive this trial. I want to help every NICU family. Every cleft family. Every family that has a baby period. I want to help them all get an amazing start. I want to tell every mama I know that she is fantastic and amazing and that doing the best you can is good enough. You are good enough. I want to join all the support groups and do everything I can to make everyone's life easier. I also don't want to leave the house. I don't want to talk to people and sometimes I feel completely exhausted telling our story one more time. And so, I settle back in the in between. 

I exclusively pump, but want to breastfeed. She gets breastmilk, fortified with formula. I have a massive pile of cloth diapers, but we currently use disposables. Sometimes I let her cry. Sometimes I let her fall asleep on my chest. She sleeps in our bedroom, but in her own crib. I let her chew on her whole hand, but not suck her thumb. I love to wear her around and hold her as much as I can, but also let her just lay on the floor while I clean or shower. I don't want to helicopter, but can't be totally free range. So I settle back in the in between. 

I've only been a mother for ten months, but thus far, it feels like I lurch from one panic to another. Maybe I have postpartum anxiety, probably, but then I think, no shit I'm anxious. Did you see what I just went though? How can you stand in the doorway of your daughter's hospital room and watch a team of a dozen people perform CPR and work frantically to keep her alive and not be just a little anxious from there on out? How can you watch your baby, little more than a fetus, just a few weeks past any kind of viability, and weighing less than bunch of bananas, fight for her life and not worry? How can you have this little piece of yourself walking outside of you in this terrifying world and not be frightened for their life on a daily basis? And therein lies the dichotomy again. The in between. I wouldn't wish this terrifying journey on anyone, but I know many people who would take it. I know so many friends who have tried unsuccessfully for years to conceive. People who have lost their children through miscarriage, still birth, hell, even the flu. We ran the gauntlet, but we still have our beautiful little girl on the other side. Back to the in between. 

Again, I'm not sure this post will ever see the light of day. Putting a voice to this struggle, this dichotomy, these warring feelings, might be all that I needed to process things a bit. And maybe it's not just NICU mamas who feel this pull. Maybe it's all parents, but if feels heightened in my case. I'm happy and angry, sad and hopeful, petrified and so, so glad. All of the emotions, all the time. Now, please know, if you're one of these lucky people who breezed through your NICU stay in a week, or a month, or never even made it there; if you're a person whose kid will never have a surgery, and you have no worries for their mental capacities; if what you're going through, regardless of what it is, feels hard, please know, I'm not directing this rant at any one in particular, or even in general. I may be quite mad at you in the moment when you say how sad it is that your baby cried when they got their first shot, but really, it's only out of jealousy. Just as a mama who is wheeling her baby in for heart surgery probably wants me to shut up about how hard it is for my little to have a cosmetic procedure, or just as the mama who has lost her babies wants me to shut up about how hard it is to have a healthy one. It's all relative, and while it is painfully  hard to be understanding sometimes, that doesn't mean we should stop trying. 

I write this all as a beacon of hope for some, but also as a reminder of humility for others. When Beast had her cleft surgery they put her in the PICU for recovery, just in case. She didn't need it at all, and suddenly we were those people. Those parents whose baby was totally fine, laughing and talking and having a grand time as others struggled next door. We've had the sickest baby on the unit. We've had the healthiest baby on the floor. I've been the hope and the humility all at the same time. Someone else has looked at me jealously, just as I have looked upon another. Someone else is holding me up as an example of God's grace, just as I've sought out my own flickers of light. We are all and one. 

So carry on mamas. Carry on in the in between. I'll be right there with you. 

Getting to hold my Beast for the first time, 18 days old. Talk about hope and grace. 

Getting to hold my Beast for the first time, 18 days old. Talk about hope and grace.