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. 

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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.Β 

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

Pregnancy Part Two

Oy, so I fully intended to get this second part of my pregnancy story posted a week after the first. Maybe two at the most, I thought. Ha! What is it now? Two months later? Y'all, this parenting stuff is legit time consuming. I don't know how all these mommy bloggers do it. There's no way I can do a blog post a week, plus feed myself, feed the baby, wash myself and the baby, occasionally do things like vacuum and dust (ha, just kidding, never made time for that pre-baby), much less look halfway decent doing it. Seriously. I want to be a fly on the wall in one of their pristine houses for a day, 'cause I just don't understand how they do it all. I'm guessing cocaine (kidding), or just very carefully crafted photography. Anyway... no BS around here. My house is a wreck, I've only showered once this week (though it is only Wednesday, so I guess that's not too bad), and the sink is full of dishes, but tonight, I'm going to take some friggen' time to write this blog post, if for no other reason than so I can cross it off of my To Do list and not more it to next week's spread yet again. :)  Here we go... pregnancy part dos. If you missed part one, check it out here

After the initial shock of our ultrasound with the maternal fetal medicine doc wore off, we went home and holed up for the weekend. We spend a lot of time crying, and trying to process what all of this new information meant. I cancelled a lot of plans because I just didn't want to talk to anyone, or have anyone ask about the baby. I didn't want to lie, but also didn't want to tell anyone what was going on until we knew for sure the extent of what we were dealing with. Eventually we picked ourselves up, dusted ourselves off, and started the waiting game. Because we opted to do a full microarray for the amnio, it was going to take a minimum of 10 business days and up to a full month before we would know the results. Of course, like the amnio (which was only supposed to take 5 minutes, but ended up taking almost 45 because Beastie kept moving and reaching for the needle), the results took a long time to come in. We went about our lives as best we could. we started work on my office/craft room, the nursery and the upstairs bathroom. I travelled with the hubs to Seattle for a few days. He had a work conference and I hauled my fat rump around town doing some sight seeing. I was finally feeling pretty decent, though my feet were constantly swelling, and walking the hills of Seattle didn't help that much at all. Finally, mid-June, while I was standing in the Chihuly museum, I got the call from our MFM with the amnio results. Thankfully, everything came back clear. No chromosomal issues at all. I've never been so relieved. We finally knew what we were dealing with (ha, little did we know), and could proceed with the pregnancy as planned. 

My view when I finally got the good amnio news!

My view when I finally got the good amnio news!

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We setup a prenatal consult with the Cleft Clinic at Children's Colorado. They were wonderful and it was very reassuring to meet with the staff and gain a better understanding of what surgeries Beast might need, the general time line, and some ideas on what to expect. We had several more ultrasounds with the MFM, though Beastie always had a hand, umbilical cord, or something in front of her mouth and we were never able to get a clear picture. Beast still measured a little small, but overall everything looked good. 

One of the Beast's many ultrasound pics.Β 

One of the Beast's many ultrasound pics. 

Throughout the month of June, however, I was experiencing a symptom that I'd later learn was a result of my increasing blood pressure and impending pre-eclampsia. While my evening sickness and heartburn subsided for a few weeks, it started to come back mid-June. I had terrible heartburn at night and would often wakeup in the middle of the night feeling like everything I had eaten all day was sitting just below my throat. I brushed it off as a normal pregnancy thing. Little did I know. 

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Anyway, at the beginning of July, I went in for a routine check up and they found my blood pressure was slightly high. So, they ordered some blood work and a 24 hour urine test (nothing says fun like a jug of pee in the fridge). All of those tests came back within normal ranges, so my doctor instructed me to watch for some indicators of pre-eclampsia and sent me on my way. 

A week later, I had a headache that just wouldn't go away. Honestly, it wasn't even much of a headache at all, maybe a 2 out of 10, but it was persistent so I called the doctor just to be safe. Since I had to go in for my four hour glucose test anyway (barf to that surgary crap), they told me to stop by the office beforehand for a quick blood pressure check, just in case. It was 190/100, definitely too high. So, my doctor immediately sent me up to labor and delivery for observation and another ultrasound. Four hours later, my blood pressure was still climbing, and the ultrasound showed that Beast had slipped to the 4th percentile for size. After my BP hit 210/130, they made the decision to send me down to University, a larger hospital better prepared to deal with severe pre-eclampsia and a potentially premature baby. 

Luckily, they didn't feel I was bad enough off to warrant an ambulance ride (thank God since the hospital bills were high enough even without that), so the hubs and I drove home, quickly packed, and headed to Aurora. 

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I'll leave you there for now. Next posts will be my hospital stay and the delivery! Hopefully those won't take nearly as long to get out. :) 

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In the Beginning...

I suppose, if we're to take this journey together, you and me, you should know where it all began. And since all of this began nearly one year ago, it seems as good a time as any to start. 

In my head, as I lie in bed at night trying to fall asleep, I compose the most wonderful writing. I always know exactly what to say. It flows, it's eloquent, it's equal parts Neil Gaiman, J.K. Rowling and Louis CK. The writer me of bedtime is amazing. Unfortunately, those beautiful bedtime words are even slipperier than most. I can never remember how I phrased things just so in the morning, and the times that I've attempted to keep a little notebook by my bed have proven fruitless. Sleepy me is excellent at words, but as soon as I try to voice them or keep them in some permanent state, they're gone. They are wild and untamable, my sleepy words, impossible to capture.

Anyway, this big, long, random introduction is really just the prelude to my actual blog post, which I had written quite beautifully last night, but alas, awake writer is far worse than sleep writer. Regardless, if this blog is going to be all about our journeys as a Micropreemie/Cleft family, we should begin at the beginning of the family.

So, our story began as many do, with a pregnancy test. I bought several after work, and was completely petrified that I'd run in to one of my students or their parents at the drugstore. Not that I had any reason to be embarrassed about buying them, I'm married and 34, but it's still just weird. Anywho, I waited until the Husbeast got home and then took the test. I don't know that I've ever had a longer three minutes in my lift. I was so anxious! I wouldn't have imagined that I would feel so scared, so nervous, so everything! I remember commenting that I was really, really glad I'd not had to take a pregnancy test before then as I don't think I could have handled the stress of it at 16, or 25. After three minutes, I went to check and there it was, the faintest little pink line. I think we were both in total shock. A part of me felt like I knew already, but it was just so.... real. Before then kids had been this esoteric, nebulous maybe, and now? Now it was definite. Concrete. Crazy. 

I called my docs the next day to schedule an ultrasound to verify the pregnancy. Seeing that tiny little bean at 6 weeks was unreal. It's such a strange feeling. I didn't feel pregnant. I wasn't sick (yet), wasn't fat(ter than I normally am), I was still just me... but that me was now us. 

The littlest beast at about 6 weeks.

The littlest beast at about 6 weeks.

The first several weeks of pregnancy were completely uneventful. I thought that morning sickness started immediately, so I also assumed that I was in the clear since I had been feeling pretty darn good. Wrong. So, so wrong. Starting around week 7 I got all kinds of morning, well, evening sickness, and reached levels of exhaustion that I didn't know were possible. I didn't throw up much, which was very fortunate as the times I did throw up we found that I broke all the blood vessels in my face and next and looked like I'd been beaten, but I felt nauseous in the afternoons and evening all the time. I craved chocolate milk, watermelon, fruit snacks, and potstickers. Not all together. We told our families once we were safely out of the first trimester, but decided to wait until after our 20 week scan to make the obligatory Facebook post. 

The ultrasound started out normal, and me, being the oblivious, naive girl that I am, didn't notice or think anything about it when the sonographer stopped talking. We wrapped up and waited in the room for the midwife to come in and go over the results with us. I immediately began to panic when she came in with a rather grim look. Little Beast (thus named because we weren't finding out the sex and she was a venomous beast making me sick) was too small, the 8th percentile, and the sonographer thought she saw a bilateral cleft lip. I don't even remember what we said, what questions we asked. I just remember feeling so, deflated. We'd had the maternal/fetal DNA test done already that had ruled out all the big chromosomal problems. I thought we were home free. Apparently not. The midwife gave us a referral to the Maternal Fetal Medicine doc to get a follow up ultrasound and figure what we were really dealing with. The hubs and I went to get some lunch, and I cried, and we called the MFM. Luckily, they had an appointment available later that afternoon so we didn't have to wait. 

Honestly, I don't remember much between the two appointments, besides crying. I know we talked about what ifs and what to do, and just felt sad, and scared. I'm so glad we didn't have to wait, especially since the MFMs are only at the Boulder Hospital a couple of days a week and we were coming up on Memorial Day weekend. At any rate, we went to out MFM appointment that afternoon, and after a 2.5 hour ultrasound, God love our fantastic ultrasound tech, she was so sweet and calm and amazing, we met with Dr. Harper. She was so upbeat and lovely, she really eased a lot of our fears. Though Little Beast didn't let us get a good shot of her face (she always had her hands in front of her face, in the womb, once she was born, even now) the Dr and sonographer were fairly certain that her cleft was only unilateral and that she was measuring more in the 30th percentile. So, things weren't as dire as we first thought, but both the size and the cleft can be markers for chromosome problems, and since we'd ruled out the big ones already things were likely either just fine, or we had a problem that would make the pregnancy unviable. 

Then came more decisions. Do nothing, abort, or do an amniocentesis to rule out bigger problems. We went with the amnio option, which was painful and took way longer than it was supposed to because Beast kept reaching for the needle. After that, all we could do was wait (three weeks for a full micro-array) and try to process. 

I'm not going to lie, the processing was hard. Really hard. We both cried and just kind of holed up and mourned for the weekend. I was finally feeling pregnant, finally feeling the baby move, and now, everything just felt so uncertain. Our baby could have something terrible that would mean it wouldn't survive, and even if nothing major was wrong, we were still looking at several surgeries to fix a cleft lip and possible cleft palate. I might not be able to breastfeed. We'd have to watch our baby deal with surgery, and possibly some really tough bullying. It's so hard to go from feeling like everything is awesome to mourning what you thought things would look like. 

At any rate, this post has gotten entirely too long, so I'll continue with our little saga later. Hopefully next week! I'd love to meet my readers, so if you are here leave a comment and say hi! 

Back in the Saddle

Well then, guess who's back? Back again? 

No, not the master of rap himself, just little old me. Back at blogging, back at writing, and hopefully back at painting again soon. It's been a while, over two years in fact, and a lot of things have happened. Some awesome, others, not so much. I'm getting the blog back together to share my experiences, and hopefully provide some inspiration to those who might be on a similar path. It'll be lots of baby stuff, artwork (hopefully!), DIY projects that take way too long, knitting, probably some cooking and who knows what else. 

I hope you'll come hang out with me and share in our ups and downs. I'm really hoping to post once a week, but as you can see by my picture, the biggest change recently is the addition of The Little Beast (tm), so time is a hot commodity around here. If I'm not here, come say hey on Instagram or Facebook. I can usually be found somewhere on the web. :)