Update on Little Bear

It’s been just a few months since I last updated about Little Bear. The past 6 months have been overwhelmingly crazy busy. Thankfully nothing too drastic with Little Bear, but still, life, ya know?

Little Bear is a month away from being 1 year old and the memories of his first year are alternately startlingly clear and foggy. The clear memories are of course the most traumatic (my water breaking 6 weeks early, rushing to the hospital, him being born a mere 4 hours from my water breaking, his seizure coming out of surgery in April, his botched sleep study…) and the foggy ones are the every day random moments (the first time he smiled, the first time he fully rolled over all by himself, the first time he slept through the night…). All thing considering, Little Bear is doing very well. He is funny and quirky and very opinionated for a baby. As long as he has food, naps, and mommy, he’s good. He is the happiest baby I’ve ever seen and I know I’m his mother and I’m biased, but seriously, he smiles and laughs a heckuva lot.

Little Bear started crawling this past week, and at first it was moving his hands forward and then hopping or scooting his legs together. Now it’s actually alternating knees as he “walks” forward with his hands. Little Bear has realized that he can actually move himself to get the things he wants, and when he wants something, he can move quite swiftly. Big brother’s toys are no longer safe, and Little Monkey has to constantly move his lego towards and planes and cars out of the way of Little Bear’s eager fingers. I love listening to the two of them in their room in the mornings. Typically both of them are away by 7am, and Little Monkey entertains a bubbly Little Bear with toys, wild dances, and by dumping various objects into Little Bear’s crib for him to play with.

Little Bear’s therapist comes to our house once a week and we realized a few weeks ago that Little Bear purposefully stops doing some things when she is here. It’s really rather amusing! When he doesn’t want to do some exercise she’s trying to get him to do, he’ll try to roll over to his back. He even tries to roll over at times when he’s standing or sitting up. Yeah, doesn’t quite work like that, little bud! We’ve realized that even though Little Bear is quite strong, he doesn’t quite get mobile planning. As in he doesn’t reliably remember hands on the table first, then you push up to stand up. He more often than not tries to launch himself upright and ends up bopping his nose against the table. So yeah, we’re trying to remind him that he needs to stabilize himself first and then complete the steps.

I am no longer feeling like we have to continually be on edge with his head. For a short while there I felt like we were on red alert with his head measurements. Little Bear does have a big head (I think it’s becoming more proportionate though!!) but his head circumference measurement should be leveling out now and should not be drastically increasing. I try to stay on top of the measurements and after November’s appointment with neurosurgery, I feel like I can take a breath. Our favorite neuro nurse practitioner and I went over his chart for a good ten minutes comparing our notes on his head measurements. From this point forward, only three people are going to be allowed to measure his head; me, his surgeon, and our favorite NP. Because there ends up being a huge discrepancy in the measurements since every person gets different measurements, we need consistency AND accuracy for those measurements. It feels uncomfortable to hope that his head will continue to stay steady, but I do hope it will. Even writing that out makes me feel like I’m going to jinx it.

At Little Bear’s next clinic in January, we’re going to start evaluating him for leg braces. His left leg does turn in but orthopedics says that should correct itself. I’ve been playing with and tickling his legs recently in an effort to distract him while I work on some stretches. I swear he has more feeling now in his legs all the way to his ankles. He is definitely ticklish from ankles up to hips on the insides of his legs. The outsides of his legs are where I think the nerves are a bit more damaged. I see his toes move every so often, but I know he only has spots of feeling in his feet. He has started noticing that there are things that exist above him that he’s started reaching for when he is crawling around. I fully expect him to start pulling himself up soon! But this is where things get iffy; we’re not sure how much weight bearing on his ankles he can do. He is definitely strong enough to pull himself up, but can his ankles support that kind of movement? That’s where getting AFOs would be helpful for him. Just to give him enough stability to be confident with standing, walking himself along furniture, and then, actual walking by himself. His therapist doesn’t think that Little Bear will need AFOs permanently. I’ll believe that when I see it though. Phil and I were talking the other night about encouraging him with pushing himself, but also not wanting to be unrealistic with things either. It feels like such a fine line. We know he’s so determined and strong and I think he’s going to surprise up with many things. But I especially don’t want to get my hopes up for something and being heartbroken when it turns out he can’t do that thing. So far my approach has been eagerly watching and helping when he needs help and then celebrating the hell out of whatever he accomplishes!

It is still hard at times realizing he is almost 11 months old and is just now crawling. I know several other moms with kids his same age and they’re way ahead of him with mobility and milestones. I know my Little Bear not only is victoriously fighting an uphill battle with his SB, he also is dealing with the side effects of having been a preemie. Then on top of that, I’ve had two friends had their kids diagnosed with failure to thrive in the past two weeks. It makes me feel guilty because Jamie truly is doing well right now. It makes me ache for those mamas because the mama guilt is so strong. For some twisted reason, failure to thrive ends up being put like it’s mom’s fault. Us mothers are put on pedestal but when something goes “wrong” it’s suddenly ALL the mothers’ fault. So frustrating. But anyway, watching my squishy, thriving Little Bear makes me feel like I should keep quiet about how well he’s doing so it doesn’t make my friends feel even worse. It’s hard to find that balance.

Oh, during the past 6 months since I last posted, I weaned Little Bear. Quite frankly that was one of the best decisions I have made this year. Not only does Little Bear love his bottles, I no longer feel the anxiety and nerve-wracking D-MER I felt when I was still nursing him. Little Bear is eating solids and is starting to be able to handle soft mushy foods such as eggs, rice, potatoes, and a few other things. He doesn’t however like bananas AT ALL. I think it’s a texture thing? He doesn’t like mashed avocados either, but he will eat bites of them if I give them to him from my bowl. He is super interested in food and watches every bite I take in front of him like a hawk.

So okay, long post short, Little Bear is thriving and that makes us feel good. It seems like the year is ending a little less hectically than it started. Phil and I would say that this year has been both horrific and incredibly fulfilling. We’ve faced some of the worst trauma we’ve experienced yet, but also some of the biggest joys and excitement as well. It’s been the hardest year we’ve ever faced, but also the year we were the strongest and are ending it even closer as a team than when we started the year.

Thank you for reading and until the next update!

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Updates on Little Bear

It’s been a month (well, over a month) since I last posted. After April, I had to step back and just find some space to breathe. May was rough, but for a variety of reasons not necessarily connected to Little Bear.

He’s doing well. I hesitate to even write that out, but I think I’m just going to go for it. His head is holding steady. I check it multiple times a day, constantly feeling his soft spot, checking his eyes, looking for signs of returning pressure. All of the scabs have just about fallen off his head incision and his awful cradle cap is almost gone.

Little Bear is a squishy 16 pounds now at 4 1/2 months old. He’s working on holding his head steady when he’s upright, and is pushing himself up more when he’s on his stomach. I found him on his back yesterday! Little Bear had rolled over from his stomach to his back. He looked just as surprised as I was to find himself on his back. He’s working on two bottom teeth, but I’m not expecting those to pop through for another week or two. They’re close, but not pushing through just yet!

We saw Urology for the first time two days ago and they cleared Little Bear of needing to be cathed. There is no reflux in his kidneys, and any urine that collects in his bladder he pees out immediately. That could be an issue when Little Bear is old enough to potty train, but we will deal with that when we cross that bridge! It’s a relief to be done with Urology for the time being. We’re done with Pulmonary, FINALLY got the order to discontinue oxygen even though Little Bear hasn’t been on oxygen now for almost two months. And we’re done with ENT until at least the end of the year. Little Bear’s reflux meds are an absolute pain in the rear end to get, but at least I have a game plan with that now. As long as Little Bear’s reflux doesn’t get worse and we can keep him at the dosage he’s on right now until he’s 10 months old, then we should be able to actively wean him off the meds.

My postpartum depression/anxiety hit a massive low towards the end of May. It certainly didn’t help that my brain decided then to release some blocked memories from about 22 years ago. That meant frantic calls to therapist and midwife asking for help. I’m grateful that Little Bear is doing so well. That means I’ve had the “freedom” to take care of myself without having to focus on him so much and worry about him. A minor adjustment to my zoloft helped and I’m in an okay place right now. Still processing a shit ton of stuff, but at least I feel okay.

I’m afraid I don’t have much more of an update than this. Right now the focus has been simply surviving and trying to take care of myself. Thanks for understanding.

All Things Little Bear

I have tried to start this post three times. I just haven’t been able to find the words to express what the past three weeks have held. So I’m going to just write out a chronological order of events instead of trying to unpack all of the emotions and hurricane of thoughts I’ve been in the middle of.

As we learned more about myelomeningocele (spina bifida) and Little Bear’s case while I was still pregnant, the more I wondered about the possibility of him having a shunt after he was born. “What are his ventricles measuring at?” was always my first question during ultrasounds at Children’s. When he was in the NICU, every morning when I got there, I asked three questions; how did he do overnight, anything new, and how’s his head? I expected him to have a shunt within his first week of life. But as the days and weeks started passing I wondered if maybe, just maybe he would surprise us and stay in the 15% of kids with SB who don’t need help with their hydrocephalus.

Three weeks ago, this narrative started shifting. He had his second post NICU head ultrasound and after talking with his neurosurgeon, it sounded like we were heading towards needing some sort of intervention. Little Bear’s ventricles were no longer holding steady and were slowly starting to get bigger. His head measurements weren’t leveling out and the surgeon wanted him to have a MRI. Two weeks after his head ultrasound, Little Bear and I were headed in to Children’s for a MRI. Because I was going to be with him, I had to strip too and put on a hospital gown. I tried to not let the whole experience dredge up too many memories of the last time I had been in that room. Little Bear was on the outside now and he was safely tucked in my arms, falling asleep sucking his pacifier. After the MRI, we had an almost hour long appointment with the neurosurgeon. We talked about the MRI findings and decided it was time to move forward and schedule surgery. The biggest question was which surgery.

After realizing how high the numbers were for kids needing shunts, I started doing research. Carefully mind you, the internet is a mine field for any parent with a kid who has any condition outside of an average child. I stumbled across a procedure called ETV or Endoscopic Third Ventriculostomy. I noticed it was commonly referenced with a secondary procedure called CPC or Choroid Plexus Cauterization. I didn’t fully understand what those two things meant, but the more I read about other moms experiences with shunts versus an ETV/CPC, I wondered if the ETV would be a possible option for Little Bear.

As an ETV is still a relatively newer procedure, when I asked back in November about the possibility of Little Bear getting that instead of a shunt, I was told it probably wouldn’t happen. The biggest concern that specific neurosurgeon had was that the risks for excess bleeding were too high for a newborn. So when Little Bear’s NS (neurosurgeon) said it’s time to consider the next steps, I took a deep breathe preparing for the news that a shunt was his only option. But! The NS surprised me and offered an ETV as an additional option. We talked through what doing an ETV would mean and the NS told me that it would most likely depend on the results of the MRI and what Little Bear’s anatomy actually looked like. After we saw the MRI results the NS actually gave us the option of driving/flying to Utah so that Little Bear could get both an ETV and CPC. The kicker was that our Children’s wouldn’t be starting to add in the CPC procedure until July. Yes, this coming July.

Long story short, we decided to go with the ETV even though the odds were a little stacked against us.

Little Bear had surgery this past Thursday (five days ago) and this mama was a bit of a wreck leading up to the moment we entered the hospital. I watched them wheel him away in the crib bed and knew my job was done for now. He had finally fallen asleep, and was still sleeping as they wheeled him away. It was all up to the surgeon and Little Bear. I knew the next time I would see him, Little Bear wouldn’t be feeling very well. His neurosurgeon came out barely an hour and a half later to tell me how the surgery went. He showed me pictures of a very interesting discovery he had made in Little Bear’s brain. Somehow Little Bear’s brain has created an opening in a membrane that isn’t usually there. The NS explained this was actually a really good thing. That opening meant that doing a CPC would be really easy and actually work well with Little Bear’s anatomy. So basically we went from a 25-35% chance of the ETV working and if that fails then we go to a shunt, to having the option of IF this ETV fails, the NS is willing to go back in, repeat the ETV and then add the CPC because Little Bear is perfectly set up for that. This is such good news for Little Bear. That’s one more option between us and that shunt.

They took me back to see him an hour later. My little bubby was paler than I’ve ever seen him and making awful little rasping cries. He was hoarse from having a breathing tube down his throat and he had lost the ability to suck. He couldn’t actually suck on anything for about 3 hours after that.

I am learning with my Little Bear that the best way to be his mama is to take my hands off and let him drive. So far, five days out from surgery, he’s doing well. His head has gone down a half centimeter, his soft spot is still soft, and he is acting a lot more calm and comfortable post surgery. He’s also doubled his sleeping times at night too. I don’t think I really had understood how much his head had bothered him prior to surgery.

I know this won’t be his last surgery, but I am glad this one is done. There was a certain amount of scary stress about the unknown leading up to finally hearing those words “it’s time to think about next steps” with his hydro. Now he’s had the ETV done, we’re managing his hydro, and now it’s monitoring and hoping for the best from here until the next thing comes up.

I don’t deny it’s hard to just not know what I don’t know when it comes to Little Bear. Some days are harder than others, some days are actually good days. But, don’t get me wrong, this is hard. It is hard watching your child cry because his tummy hurts and his head hurts and you can’t do anything but hold him or touch his face and hope that that’s enough for now. It is hard to see the horseshoe shaped incision on his head. I am glad I was able to hand him off to the capable nurses and I didn’t go with him back to the OR. I don’t think I would have been able to handle that.

I don’t know what’s next. I don’t know what the next month is going to hold, or what things will look like at the end of summer. But for now? I’m holding on to my squishy little bear; holding him close and reveling in his newfound skill of smiling at mama and making his sing-songy sounds.

 

 

 

Happy One Month, Little Bear

One month ago, I sat in my hospital bed, staring out the windows wondering if the past 10 hours had really happened. I had woken up merely to use the bathroom at midnight and that turned into a hurriedly packed trip to the hospital where my Little Bear was born crying a mere 4 hours later.

merely two hours old, full head of dark hair
merely two hours old, full head of dark hair

One month – it feels like it’s been twice as long and half as short.

We knew that as soon as Little Bear was here our lives would get a big chaotic dealing with his surgery, definite NICU stay, and whatever else he would need. Because of this, I had made sure to have freezer meals done, friends lined up to come and stay while we adjusted to life after his arrival. My baby shower was scheduled, a sign up genius for meals was set up, and my bag was packed by 32 weeks. Ever since we had gotten that first diagnosis of his spina bifida, I had felt like I was on a countdown clock that was flying along instead of steadily ticking down. To anyone who would listen, I explained that I didn’t think he would make it to his updated due date. I felt an anxious drive to get everything ready as soon as possible. I was on borrowed time and I worried about being able to give Little Bear the time he needed to full develop and be ready to come earth side.

I’m a month out now, and I still don’t feel like I’ve really processed the past month, especially those first two weeks. In a way I am glad my body went into labor by itself before going in to the OR for the c-section. I felt validated that everything my body had been telling me was true. I had felt a loss of not being able to have Little Bear like I delivered his older brother when we got his diagnosis. Having my water break and then being rushed into a c-section as my body quickly began laboring was the perfect mix of the two. I hated those three hours up to the moments AFTER the spinal kicked in. They went by too fast for me to really start panicking, but my body was freaking out, and I knew that if they hadn’t gotten me to the OR as soon as possible, things would start progressing really fast. Even though Little Bear’s arrival happened in the middle of the night, Phil nor I really felt alone. The nurses and my doctor were amazing. I knew that even though things happened quickly, there were those who were still thinking about and praying for us. I knew that even though I was only 34 weeks pregnant, my Little Bear was yet again proving that he was the one driving the whole deal. I knew he would be okay.

Within 8 hours of his birth, Little Bear went back for his own surgery. I am forever grateful for the neurosurgeons and anesthesiologists who continually popped into my room to let me know how my baby was doing during surgery. I never felt like I was being kept in the dark about his well being. So when I heard that he had remained completely stable during surgery and was now back to his room in the NICU, it wasn’t a surprise. Is it too presumptuous to say that I always knew he would do just fine? I went to see my Little Bear an hour after he had come out of surgery and felt the tears prick my eyes at the sight of my strong little warrior. He obviously hated the tube down his throat and was starting to fight it. They had warned me that he would/could possibly be in the NICU for [up to] 6 weeks. I remember texting a friend who had been in my shoes 18 1/2 years before saying that I bet he would be out of the NICU in 4 weeks.

It is now 4 weeks after sending that text, and Little Bear’s been home for 2 of those 4 weeks now. As grateful as I am to no longer have a preemie in the NICU, I will never forget those moments just before I would walk into his room, worrying that something had gone wrong. Little Bear started life earth side weighing 4lbs 15 oz, 18.7″ long. He now weighs just over 6 1/2lbs, and is about 19.1″ long.

As much as people kept calling him a rockstar (all the nurses, friends of mine, doctors…), it felt weird to call my baby a rockstar. Maybe I felt like it was jinxing myself (and him) to call my baby a rockstar. I merely smiled and nodded because I knew my baby was a fighter, but I wasn’t willing to acknowledge his incredible progress. I just took each day as it came and kept pace with my child as he blew through milestone after milestone, cutting his time in the NICU down to 1/3rd of what it was supposed to have been. I can see and feel the spirits guarding him and I’m trusting those fates to keep him safe when I can’t.

Having my whole family home the past two weeks has been both amazing and odd. This is the first week I am finally feeling like we have some sort of normalcy back. I feel like Little Monkey is finally adjusted (for the most part) to having Little Bear around. He begs me to let him hold his little brother often and has to watch Little Bear sleep. Little Monkey is still a little cautious around his brother, especially when Little Bear starts crying or waving his limbs all around. Little Bear and I have figured out a rhythm for night time feedings, and as long as I stick to the same each night, he sleeps well. The biggest question and frustration for me right now is getting him off oxygen. His pediatrician thinks he’s about ready to come off the oxygen, but wants him to see a pulmonary specialist before she takes him off. It’s getting annoying lugging around the oxygen tank every where he goes. But, I know that’s not going to last for forever! I think now that the end of that is technically in sight, I am anxious to get there.

Little Bear still doesn’t have a shunt, and according to his neurosurgeon, his head is holding steady. This part still worries me, but if they’re not seeing drastic increases in the size of his ventricles, then I do feel like I can take a breath and relax a little bit more. I still feel like we’re on borrowed time before he will need a shunt, but maybe Little Bear will surprise us…yet again?

My body doesn’t even feel like it was pregnant (minus the almost constant headaches, achy hips and tailbone). I see those weekly pregnant belly collages on Pinterest and feel a slight sense of nostalgia. I only made it to 34 weeks, and part of me mourns the not even making it to the “I’m so very done being pregnant” stage. I know that part is not fun, but I didn’t even get there! I barely gained any weight, and am sitting at just about having lost 20lbs right now. I am grateful for the “easy” recovery, especially with everything else that happened in Little Bear’s first two weeks of life. I am especially thankful for having made it through the first month of his life earth side. Today, of all days, was when he was supposed to have arrived. I was supposed to be at the hospital right now, recovering from a c-section at 10am this morning. But, Little Bear had other plans.

Happy one month, Little Bear. You are my snuggly little bear, instantly becoming alert whenever you hear my voice. I worried that the separation we would face when you arrived would make me lose my connection to you. I couldn’t have been more wrong. You are mama’s boy through and through. We share scars from your arrival and I will always feel that strong thread connecting us. You have FAR exceeded my expectations with nursing and sleeping now that you’re home. I am still taking an expert level class on how to wrestle with the octopus you become every time I change your diaper. Your extremely strong leg movements continue to surprise and give your dad and I much hope for your future mobility. It makes me tear up thinking about what’s possibly coming in your future. I will fight for you, and yet, I know that you’re going to keep fighting for yourself.

You are my little warrior bear, my fighter, my expectation breaker.

The Arrival of Little Bear – Part 3

(Parts One & Two)

The day of my discharge had arrived. Saturday morning began with me heading over to the NICU again at 4:30am. I needed to see Little Bear and know he was still doing good. I discovered this scene when I walked into his room. img_4225

Because he had a little bit of jaundice they had him under lights. Now that he no longer had to be on his tummy, he slept so much more comfortably and was so happy to sleep on his side. His contentment made me feel a little bit more at ease knowing he was happy and well taken care of.

I headed back to my room an hour later, I was ready to be discharged. I needed to be in my own bed at night, but as I had stood there watching my baby peacefully sleeping, I started to feel an inkling of what it was going to be like later that day to leave him behind as I went home. I had had difficulty the night before trying to get a letdown with my pump. I tried three times over three hours, and was finally able to get a letdown and got a ton of milk. But I was stressing out, worrying that I wouldn’t able to make pumping work and I wouldn’t be able to give Little Bear my milk. I can now say that since getting home and getting my Freemie cups set up, I haven’t had a single issue since about getting a letdown and have been producing more than enough milk. According to the milk lab at the NICU, I currently have just over 100 ounces of milk stored in the freezer. And that doesn’t include what I’ve brought in the past two days!

Phil showed up with Little Monkey around lunch time. I slowly and carefully pulled my wagon (Children’s has red Radio Flyer wagons all over the place to use for transporting things to and from rooms in the hospital) down to the main lobby to meet them. I started feel a panic creeping towards me. I was leaving my baby upstairs. I was tired, achy, and my heart was splitting. Not breaking, just splitting. I was leaving half of myself in that little room. We drove away from the hospital and somehow I managed to keep from breaking down entirely.

Getting home was an interesting adventure. It was then I realized what I had caught glimpses of back at the hospital. I had been waiting for some part of me to have a breakdown especially with how honestly traumatic it was to go into labor and four hours later hear my son be born from the other side of a curtain. I knew it would catch up with me at some point. And when I got home after being discharged, it did. I had been coping through a need to have everything in order, carefully put in its place. And getting home, things weren’t. Things weren’t a big mess, but I didn’t have my normal comfortable space. I had left rather hurriedly that night, and came home to evidence still from our dash out the door. I shut myself in the bathroom and turned the shower as hot as I could stand, climbed in, and just sobbed and let the water wash away the feelings I needed to release. I had left my tiny baby at the hospital, I had had no more than three hours to prepare for his arrival barely 5 days before, I had had no more than three hours to prepare for my belly to be cut into to safely remove my child. I suppose in hindsight, the lack of time we were given has mostly played to our advantage. We didn’t have time to stress or worry over the scheduled c-section. We were just shaken up and thrown across the board, left to play with whatever chance gave us.

I was eager to go back to the hospital the next morning. My baby shower was the following afternoon, but I knew the morning was going to be the only time I would have to go to the hospital on Sunday. I felt an instant release of tension as soon as I walked into Little Bear’s room once I got to the hospital. My recovery prevented me from running down the halls to his room, otherwise I just tried to hurriedly shuffle. It did my mama’s heart good to see him. Phil and Little Monkey came to pick me up from the hospital to drop me off at the baby shower. As I was leaving, I asked the gal at the front desk in the NICU about having Little Monkey cleared so he could go meet his brother. She said she would call the charge nurse right then and he could get cleared right then and there. I was a little shocked at how quickly and easily it was done! Little Monkey was cleared in less than five minutes, and we were on our way back to Little Bear’s room so the brothers could meet. Because of the flu/cold season restrictions, kids under the age of 13 aren’t even allowed on the same floor as the NICU. But Little Monkey was cleared and he got to meet his brother. It wasn’t how I expected the first meeting to be, but I’m glad Little Monkey got to at least see his brother and Little Bear didn’t have as many wires or tubes attached to him. It will be interesting when Little Bear gets to come home for sure.

As I had stopped taking narcotics on Saturday morning, I drove myself to the hospital on Monday this past week. I did a test drive to the Target 5 minutes up the road on Sunday night to pick up my insurance breast pump. I felt achy in my hips when I got home, but no pain or pulling around my incision. I had asked my surgeon before I got discharged what her perimeters were for when I could drive again. Her only things were I had to be off narcotics and didn’t feel any discomfort while driving. So I did it. I drove to the hospital by myself, felt good when I got there (wiped out when I got home later that day) and I felt like I was getting a chance to mentally recover with the almost hour I was spending in the car driving back and forth. Tuesday the nurses told me that they wanted to start switching Little Bear to something called Ad Lib feedings. Basically, this meant that he was gaining enough weight and showing enough interest in eating that they wanted to see if he could wake himself up to eat instead of having his feedings scheduled.

Little Bear has been taking to nursing so much better than I expected him to. Granted, it’s such a comfort thing for him that he ends up falling asleep a lot faster than if he was chowing down on a bottle. But still, I laid him on my lap yesterday to nurse and he immediately started crying and rooting around with him mouth and latched right away. I realized that he knew what was coming and wanted it. When I walked in to his room on Wednesday, I was met with a happy nurse waiting to tell me that he was doing extremely well with ad lib feedings! He wasn’t having any issues waking himself up to eat every three-ish hours. The only thing they were concerned about now was that he was losing a little bit of weight. So we upped the amount of supplement he was getting in his bottles and I hoped that on Thursday I would hear good news about him having gained weight. As I showed up Thursday, I ran through my usual list of questions with the nurse, and found out my little boy had gained back not only what he had lost but double! All he had needed was that doubled dose of supplement added to his milk! Way to go, Little Bear, and he has been steadily gaining since.

I had planned to spend a good part of Thursday afternoon/evening at the NICU but within an hour of being there, I felt suddenly overwhelmed and just needed to leave. Little Bear was in good hands, I didn’t need to worry about him. However, the two babies across the hall from him were in bad shape. I overheard the doctors and nurses reassuring the parents of the one baby over and over that they had done the right thing bringing the baby in and it wasn’t their fault. It’s easy to forget that the NICU is not a “safe” place to be. The NICU is where sick babies go, the babies who need that extra bit of help, the babies who may not make it, or who may, but time is the only deciding factor. I knew Little Bear was in the best hands possible, so I left after only two hours of being there. I told his nurse I just needed to be able to breathe and get some rest. So I drove to Walmart, used my gift card to get some things for myself and some baby items in preparation of Little Bear coming home.

I was told Wednesday that Little Bear would most likely be discharged this coming weekend. Then his head measurement changed a little too much for the neurosurgeon’s comfort and they moved that to Monday. We’ll find out some time on Monday whether or not that is really the day Little Bear will be coming home. They’re prepping everything like that’s when he will be discharged. We have been given his first oxygen tank to take him home on, I have gotten call after call from home medical supply companies about catheters, oxygen, and other such things Jamie will need when we get home. Phil and I have been steadily cleaning, rearranging, and getting everything we need for being able to bring Jamie home. It has honestly been really helpful having two weeks of time to rest and recover without the inevitable difficulties of adjusting to a newborn at the same time. I feel like when he finally comes home, we will all be ready for him and not feeling like we’re struggling to just find a spot of solid ground to stand on.

I apologize if this post seems a little lacking of details. I’m now at the point where the little details are starting to fade, but I still can remember most of the broader details! A lot of other little things happened day to day with Little Bear. Mostly things like having taken all of his bottles with relish and consistently waking himself when he needs to eat. Or other things like he’s now on the lowest level of oxygen and potentially won’t be on the oxygen very long once he comes home. I want to write a post at some point here about what it’s been like being a Preemie/NICU mom. It’s been a lot more emotional than I expected and I get a lot more things now when I’ve ready posts and sayings about being a NICU mom.

The Arrival of Little Bear

CONTENT NOTE: Possibly graphic descriptions.

Tuesday, January 31st, marked the exactly four week countdown to my scheduled c-section. Tuesday, January 31st, 2017, also marked the birthday of Little Bear at 4:04am in the morning. Born 6 weeks early, 4 weeks before his scheduled birth date. 

But, let me back up and start at the beginning….

A week ago Thursday, I was scrolling through my Pinterest feed and saw a random post pop up about preemies. My literal thought process was “huh, I know Little Bear won’t be a preemie, but I wonder what this article is talking about.” I meandered my way through several other articles, and found myself thinking a lot about preemies. I also got a TDAP shot in preparation of protecting Little Bear for as long as I can after he is born. The next day I started texting questions to a dear friend of mine who is and has been in my shoes for over 18 years now. I asked her questions about how she felt right after her daughter was born, how life was with a baby in the NICU, and several other pertinent questions regarding things that would happen in the first few days after Little Bear’s birth. I periodically asked questions over the next few days. On Sunday, I almost pulled aside two friends at church to ask them to keep their phones on during the night for the following week. I forgot and then shrugged off the strong feeling that I still should ask them to keep their phones on. Monday was another non-stress test and I also woke up Monday feeling very nauseated and light headed off and on. I went back to bed half way through the morning feeling like the very little I had had for breakfast wasn’t going to stay down. I went to my appointment and even though I felt okay, I still felt really off, was lightheaded still, and just felt over all uneasy. I told my midwife at the appointment after the NST (non-stress test) that I felt light headed and just really didn’t feel good at all. She checked pressure, made sure I was eating, and said that I should just rest because it wasn’t anything they were concerned out (in other words, my vitals weren’t showing anything pointing towards anemia, preeclampsia, or things like that). The one last thing the midwife asked me before I left was if I had the on call number for Children’s. Ya know, that number you call when something happens during non-office hours. I said yes, I had the number and it was already programmed into my phone.

I went to bed that night still feeling really crappy and hoping I could sleep. I purposefully avoided taking a Tylenol PM because I hadn’t had a night “off” in over a week. I remember thinking before I crawled into bed whether or not I had actually started dilating because my contractions over the week before had started picking up in intensity but not in frequency. As any pregnant mama will know, I was up an hour and a half after I had gone to sleep needing to pee. Also for the week before last Tuesday, I had felt more and more pelvic pressure and even complained to a few friends about how uncomfortable it was even to pee.

The time was 12:18, I was about to stand up to head back to bed when I felt a very distinct “pop.” It was like popping open a soda can. And immediately a gush of fluid splashed into toilet. I sat there, stunned, unsure of I had imagined that, fairly certain that gush of fluid wasn’t pee, and then immediately went into denial. I figured I could just go back to bed, nah, my water hadn’t just broke.

I stood up, fully preparing to go back to bed, but my underwear felt wet. So I grabbed my phone and went out into the living to call my midwives and figure out what they wanted me to do. I noticed my friend, who I’d asked so many questions of, had just sent me a message 5 minutes before I looked at my phone. I quickly sent her a text and a few other friends, trying to see if anyone was awake so if I did need to go into the hospital, someone could be here to watch Little Monkey. She amazingly was awake and I explained to her via text what was going on while I waited for the midwife to call me back. The midwife on call was the one I’ve talked with the most and she knows exactly who I am, which was helpful. I described what had happened, still not willing to accept my water had broken. I wasn’t feeling anymore “leakage” but I hadn’t stood up in a few minutes and wasn’t hoping up and down on the couch. The midwife told me to call Children’s and said that I described perfectly what every other mother has said it felt like when their water broke. “This is exciting!” she said before I got off the phone. I said it wasn’t, I was only 34 weeks, it’s too early!

Note: Okay, so my water never officially broke on its own with Little Monkey. That meant I had nothing to compare this to, even though, I did know that once my water had been broken with Little Monkey, my labor progressed so quickly I never got a chance to breathe again until he was born. 

I got off the phone with the midwife and called Children’s. Within two minutes of getting on the phone with them, they told me to come in. I got off the phone, texted my only friend who was miraculously still awake at 12:30 at night, and went to wake up Phil. I only got to get a clear pair of underwear, turn on my bedside light, tell Phil to wake up, we needed to go to the hospital, and then I was massively gushing fluid. I somehow made it back to the toilet without soaking the floor with amniotic fluid. Phil was so dazed (thanks to his enviable ability to sleep incredibly deeply) but trying to wake up as I sat on the toilet and cried. All I could think was that it was too early, but all I felt was I was running out of time. I felt a quickly counting down internal clock telling me I had to get to the hospital ASAP.

Thankfully, because I had felt strongly about having my bags packed by 32 weeks, all I needed to do that night was pack up my toiletries and then I was set to walk out the door. Of all things, I grabbed a maxi dress I had gotten a year ago to wear to the hospital. The funny part was that I had purposefully gotten that maxi dress a year ago for wearing when I went into labor. Within 30 minutes of my water breaking I started having contractions 10 minutes a part. Strong enough I couldn’t move during them. Every step I took, every time I tried to bend down and pick something up, I was gushing fluid. Everything within me kept pushing me forward with a continual mantra “you’re running out of time, you’re running out of time.”

My friend arrived, I originally thought she could take me to the hospital and then come home and swap with Phil. I still had refused to believe I was going to be delivering Little Bear that night. My friend took one look at me and said nope, you and Phil are going to the hospital. I showed her briefly what Little Monkey’s morning routine was. At this point roughly an hour had passed since my water had broken. The contractions were already getting closer together. The internal voice was starting to yell at me, “you’re running out of time!” I painfully crawled into the car, still in a daze that this was happening. I was only 34 weeks, I had hoped for at least another week and a half.

We made it to Children’s in 25 minutes, now an hour and a half after my water breaking. I was aware as we turned into the parking lot at 1:50AM that my contractions were getting closer together. And still, with every step, every shift, I was gushing fluid. We waited just into the entrance of the Maternal Fetal Medicine Clinic. Phil and I both a bit in shock and feeling dazed. The nurse came down to get us, and immediately started asking questions to which I gave immediate answers. Yes, my water was definitely broken, I’m gushing fluid. And yes, contractions every 5-10 minutes. There was no pause in forward activity as soon as I stepped onto the floor of the clinic. I was taken straight to a room, given a gown, glorious mesh panties, and a pad. Get changed, then lets get you an IV and checked in. I was exhausted already, I hadn’t slept well in several weeks. The lack of sleep had started getting to the point of making me feel sick almost all day every day. The hospital bed was heaven to crawl into despite the god-awful back contractions starting to pick up. It was actually squishy AND comfortable! Amazing for a hospital bed. My room was like a hotel suite. Super high ceilings, floor to about thigh level windows, a bathroom to rival those of a five star hotel. I took it all in in a daze, trying to remember that it had only been barely a month before we had gotten a tour of these very same rooms. My IV got started. I’m sort of a pro at those now, I know exactly which vein I prefer them in, which hand, and how I prefer the tubes taped up.

The heart monitor and contraction monitor were strapped around my belly; the belly in which Little Bear was kicking away.

It was now 2:15 in the morning, between contractions, I was answering the rest of the admittance questions left on my forms. Around 2:45, the surgeon came in. I was actually happy to know that this one of the doctors that had been recommended to me. I quickly understood why. Some of the best bedside manners I’ve ever experienced, especially from a male doctor. I had asked what their goal was. Like c-section ASAP or wait, or what. The response was that they would really like to see if I could wait till morning/daylight since that would mean the pediatric team would be a lot bigger. As Children’s is very selective about the cases they take, most (with a small exception…I was one of those exceptions) deliveries are scheduled. Heck, I passed the OR every time I came in for an appointment. Everything was right there on the same floor, same three hallways. I inwardly laughed when the nurse said they would prefer for me to try to wait. I was half expecting them to try to give me steroids or something like that to try to stop my labor. But I guess they were okay with him coming at 34 weeks and felt like he would be okay. My internal voice was still yelling “you’re running out of time!”

Quick note here before I continue: No matter if I had naturally gone into labor or had made it to the scheduled c-section date, the procedures would have still been the same. Because of Little Bear’s spina bifida, c-section delivery was safest for him in protecting the swelling in his head and the cyst on his back. 

Okay…back to the story. 

As soon as the surgeon came in, he sat down on the bed, pulling up the ultrasound machine he brought with him. Ironically I had gotten an ultrasound just the day before to check my amniotic fluid. The surgeon was happy with how much was left, and was ready to let me wait, but wanted to check me before making that decision. I saw his face change as soon as he checked me. It was one of the most uncomfortable cervical checks I’ve ever had, mainly because it was like a water hose had been turned on and the pressure was starting to really kill my hips. He looks up at the contraction monitor and quickly counts to 6 (I know how those things typically look and knew immediately that my contractions were most likely 5 minutes apart and closing). He said I was 3 centimeters dilated, 70% effaced, and baby was at 1. He turned to the nurses and said let’s get the OR prepped. It was like a fire had been lit under everyone’s butt. It had been barely 2 hours from the moment my water had broken. I was brought a paper hat for my head, Phil was brought a paper gown, face mask, and hat. The nurses had swiftly put on the same things. I got a painful steroid shot in my thigh, given an awful drink for nausea meant to be taken like a shot. Smelled like dimetapp, tasted like horrible something I couldn’t name.

Another Note: It’s worth mentioning that with Little Monkey, once my water had been broken, my labor went fast and furious, and I went through transition in less than two hours. I explained this to my nurses and I don’t think they believed me until I was checked and was dilating. I have no idea if I was dilated at all beforehand, but I had been saying for weeks that I think the contractions I was having were actually doing something. Especially since they had shifted about a month ago to sharp period like cramp/contractions that reminded me of how labor felt.

The anesthesiologist came in, awkward as heck, but still personable and explained what the spinal would be like and I told him that any anesthesia makes me nauseated. Suddenly all of the nurses came pouring back in the room, all explaining to each other that the surgeon wanted me in the room by 3:30. It was 3:15 now at this point. I was given the final nausea meds, tried to make my way off the bed in between contractions to slowly and painfully sit down in a wheelchair. I was then pushed out the door, across the hall, four doors down, and then into the OR. I was starting to shake both from pain and just shock that this was all really happening. Maybe it was a good that things went so fast. I never got a chance to really think/obsess about the c-section. I never got a chance to get worried, stressed, or anxious about it. I was carefully seated on the edge of the table while the spinal was administered. That hurt. A lot. Especially with the back labor I was experiencing. However, once it was placed, it did its job fabulously well. They laid me down quickly, and I felt from my rib cage to my toes grow numb. The only moment of panic I felt was realizing that I could still “feel,” as in I could tell is someone was touching me or leaning against me. I panicked then about maybe then I would suddenly feel pain. The drapes were up in a flash, I had this blue sanitizing dye all over my belly, and Phil was brought in.

I felt a tugging and shifting of my body by the nurses and surgeon. The anesthesiologist leans over me saying oh by the way, they’ve already started. I was shaking a lot, I knew that was fairly typical for c-sections so I wasn’t worried about it, but I definitely felt shocked/dazed. To the point of barely being able to focus on anything other than the tugging and pulling on the other side of the drapes. I still couldn’t comprehend that I was there. That Little Bear was really truly coming. That it had been only 3 1/2 hours since my water had broken.

I suddenly heard one of the nurses say oh that’s a good looking head, and then instantly Little Bear started crying loudly, protesting his entrance into the world. I started crying hearing his healthy cry. I knew, just knew that he would be okay. I knew he was only going to continue to fight, only now it would be outside my body. My job was done. My body had created him for 7 1/2 months. Now it was up to him. My job was now the backup support.

Little Bear was born at 4:04 AM, weighed 4lbs 15oz, and his length was 18.7 inches. My preemie came out not looking like a preemie. He came out weighing almost 5lbs, rosy skinned, yelling his protest at leaving his warm watery nest. Little Bear was born just less than 4 hours from the moment my water broke. 4 hours. There was a reason my internal voice never stopped saying I was running out of time.

He was born with a head of dark hair, eyebrows and all. I didn’t get to really see him until I had been in recovery for 2 hours. When I finally got to see him, it was a relief just knowing he was doing really well. His apgar score was 7/9. (I’m still not quite sure how those are measured or what exactly they mean…however, that it almost identical to his older brother’s scores when he was born)

I will continue the story in a second (or third or fourth post) tomorrow or later this week. But as I am growing very tired and I need to go pump, I will warp this post up with a few pictures from Little Bear’s first week of life.

 

 

What About When Things Don’t Go Well…

The more I read this book, Push Back by Amy Tuteur, MD, the more I wonder where the moms who haven’t had a good experience with birth, breastfeeding, postpartum depression, and such are. There is so much of a huge focus on the births that go well, the breastfeeding that goes well, and yet the moms who are buried beneath PTSD symptoms from a traumatic birth or “failed” breastfeeding get pushed under the rug.

I had a midwife appointment this past week, and had specifically requested the appointment be with one of the midwives who is also a lactation consultant. I wanted to ask her if she had any advice as to how to prepare for pumping as little bear will most likely not be able to nurse right away. She didn’t have very many tips for me, but she didn’t make me feel bad when I said I was still preparing to possibly not be able to breastfeed. I had a fairly difficult experience with Little Monkey. Sure, I did manage to breastfeed him for 15 months before he weaned himself. But those were hellish 15 months. I developed a nursing aversion in the beginning (like within a week of him being born) that included intense nausea and almost panic attack levels of anxiety every time my milk let down. He was also the kind of baby, and still is that kind of toddler, who absolutely refuses to eat unless he is hungry. This meant a lot of frustrated nursing sessions because I was engorged but he wasn’t ready to eat. Then add in severe back spasms (thanks to an un-diagnosed gallbladder issue) and I couldn’t nurse without severe back pain unless I had good back support. But I kept going, I refused to consider stopping because I was fed that constant narrative that “breast is best.”

Here’s what I want to make clear – yes, breast may be a bit better than formula, but for those of us who live in a first world country with access to good health care, good formula, and who actually get the CHOICE to breastfeed or not, breastfeeding doesn’t trump formula. Feeding your child formula isn’t going to destroy them for life. But there are many narratives that dominate the parenthood/motherhood arena of life that have been set up to make mothers who can’t or choose not to breastfeed feel severely guilty or ashamed. I would be willing to say that I continued breastfeeding Little Monkey to MY detriment. I struggled with a lot of postpartum depression and anxiety for months alongside the difficult breastfeeding. No one told me that it would be okay if I wasn’t able to continue breastfeeding. I cried the day he weaned himself. I didn’t cry because I “lost a bond” I cried from relief. But I had continued because I told myself that Little Monkey and I would lose our bond if I stopped.

This isn’t true though. Just because I fed my child from my breast doesn’t mean our bond wouldn’t have been any different than if I had fed him with a bottle. Think of the adoptive moms, and how they bond with their children while NOT being able to nurse them. That mother/child bond is not dependent on how you feed your child, or how you deliver your child into this world. It is, however, solely based on how much you take care of them. Are you there to make sure they feel safe and can rely on you to be there for them? Are you there to make sure their tummies are full and they have a comfortable place to sleep?

As I am mentally preparing for the possibility of not being able to breastfeed little bear, I am having to fight a HUGE inner battle against self-inflicted shame that that’s not doing what’s best for my baby. Logically I know that I’m going to do what is best for little bear, but holy crap, the shame and guilt I’m having to fight. It’s not good. Granted, I am in a slightly different situation with little bear’s condition. With his probable neurogenic bowel/bladder, breast milk is something that would/could greatly help him. There are options of using donor milk, but my goal is to make sure that if my body simply does not want to participate, then I want to take the shame off me and let him eat formula without any extra guilt on me. This whole pregnancy is teaching me the great importance of making the best decisions for my child AND me regardless of what the culture around me is trying to pressure me to do.

So what happens when it doesn’t go well? Nothing should happen. Nothing being no shaming, no guilt tripping, no making struggling mamas feel bad for not doing such n such. We should instead be supporting mamas for making the best decisions for themselves AND their babies. Did you notice that? I said “…making the best decisions for THEMSELVES.” Too much of the parenthood/motherhood culture builds a cage around mothers making it difficult for them to get the care they need. With postpartum depression on the rise, more mothers losing their lives to that and anxiety, we need to be more aware of helping mothers take care of themselves. Thanks to my amazing therapist, I had the tools to be able to take steps back from being Little Monkey’s mama multiple times because I felt like I was losing myself and losing my mind.

I want to see the narrative change. I want to see mothers hear that having a c-section is okay, that having pain meds during labor is okay, that not being able to or choosing not to breastfeed is okay. We already hear that natural birth is okay, in fact it’s so prevalent that that’s the loudest voice we hear. Hearing that breast is best is also such a loud voice that we don’t hear that not being able to or choosing not to is also okay. While there is nothing wrong with natural birth, I just want to see those advocates support and lift up the mamas who can’t have a natural birth or hey, guess what, choose not to!! No mama is any less or any more for how they bring their children into the world. Nor are they any less or any more for how they provide for their children. The thing that matters is how present you are for that child. How are you going to raise your child? That’s the more important question. Birth, breastfeeding, those are only a drop in the bucket of a child’s life.

 

Pregnant for the Last Time – Third Trimester Thoughts

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I am starting the third trimester today. It feels weird. I don’t remember having this sense of finality with Little Monkey’s pregnancy. This is the last time I will ever be in the third trimester. Sure, I have felt a difference with this pregnancy even from the start, but now it’s really real. I’m starting to daydream about wearing my normal jeans again! But it’s not the desperate daydreaming of a greatly uncomfortable mama. Which is also weird! It’s that daydreaming of knowing I am going to be wearing my regular jeans again and it will be very soon. In other words, it is way easier to accept that pregnancy does not last forever this time around. I still feel mostly comfortable with my body and the changes brought on by pregnancy, just minus the significant shortness of breath I’m starting to deal with. Thanks, little bear, I know I’m short-waisted, but my lungs feel like they’re in my throat!

I remember feeling absolutely exhausted from 30 weeks on when I was pregnant with Little Monkey. His pregnancy was relatively easy on my body (until I hit 32 weeks and started dealing with stronger and stronger braxton hicks that turned into prodromal labor) but it was also filled with that anxious anticipation of being a first time mom. Having grown up with many siblings, and having been a nanny, the practical side of having a baby didn’t scare me at all. It was the emotional side of things! Was I going to be able to connect with him? Haha, yeah, no worries on that front! My Little Monkey never ceases to amaze me at how happy he is and confident to try new things because he knows Mommy and Daddy are right there to help if he needs help. But you never know, right? You never know if things aren’t going to work out the right way.

Being now two thirds done with my second (and last) pregnancy, I don’t have the same worries. Obviously my worries now consist of little bear’s survival and thriving after birth, but that’s a whole other can of worms. This time I am eagerly and nervously looking forward to when I can actually hold him in my arms and I can’t wait for those first few weeks and months of bonding and loving on that little infant. I am not a terribly sentimental person, so the fact that this is my last pregnancy doesn’t weigh as heavy on me as it has and does on others. I am not in any way diminishing the mourning that naturally comes with that last baby, please hear that! This was a choice Phil and I made even before I got pregnant in June, and now with little bear’s diagnosis, that choice has been double, triple confirmed for us.

However, I know this is not how it always goes for those who end up having that last pregnancy. Sometimes, it isn’t their choice, it’s something that has to happen because of health issues that would mean major damage and/or danger to mama and baby if they were to get pregnant again. The choice (whether it was made by you or your body) to not get pregnant again is not easy. We live in a world today that still puts great emphasis on women and their bodies having a sole purpose of bearing children. Please know if this is a choice you have had to make because your body can not handle another pregnancy, no judgment, okay? It is incredibly important to take care of yourself. Even if the choice to not have any more children is a personal choice, still no judgment. Take care of yourself so you can be there for your children as they grow. Mamas are important characters in children’s lives.

This post is kind of following the same lines of my previous post from yesterday. While I have had to mourn many things with this pregnancy, this being my last hasn’t been one of those things. Acknowledging this as my last has been bittersweet, but being pregnant has always made me uneasy and this time things have been super hard on my body physically. Even though this time around has been difficult for my physically, I have savored the lasts. The last positive pregnancy test, the last first ultrasound, the last time getting maternity clothes. This final trimester is a time for savoring the lasts, I think.

So if you are facing your last pregnancy, or already have, take the time to let yourself mourn? Grieve, because that is normal and okay. Write down what you are feeling, or create a memorial of your choosing for your heart. Take care of yourself and love the little ones you may already have. I won’t say be content, because I think there will always be a part of you/me that will miss those beginning days of a pregnancy and then a newborn. But love yourself, give yourself permission to acknowledge that hard decision! Do not shame yourself if your body has failed. That is not something any of us can control. Be proud of your body for what it has already accomplished.

I guess if I were to leave anything at the end of this post it would be this; us as mamas have a obligation to ourselves to take care of our bodies, hearts, minds, and souls. That obligation comes from being an individual person/being BEFORE you are mama. I am feeling nostalgic as I’m starting this third trimester, and I know that’s going to present as depression and a lot of looking back. Because of that I am preparing even now for those darker days and the days when I need to remind myself this is not my fault. Take care of yourselves, mamas, you need you and so do your families.

**I will write more about depression and Postpartum Depression/anxiety another time as that is a topic I am paying a lot of attention to as I prepare for the final countdown to little bear’s birth

Measure – word for 2017

A few years ago a friend of mine introduced me to the idea of picking a word for the year. This is to signify what you will be focusing on in the coming year, but also to be built upon as the year progresses. I have always felt like a single word was not enough, but lately over the past three years, the words I have chosen were enough. So when thinking about the coming year, a single phrase has been running constantly through my mind; “A Measure Of____(fill in the blank).” I think in 2017 my strength is going to be measured, I am going to be stretched thin, I will find the measure of hope, love, strength that we will need for everything that will come with Little Bear. To me “Measure” means that I will come face to face with how strong I really am, how fearful I am, and much more I need to dig in and rely on the people around me.

I came up with the phrase “A Measure Of” when thinking about little bear. With Little Monkey, I have two specific hashtags I use on all of the pictures I post via Instagram. So with little bear, I wanted the same thing. The first hashtag is easy, as that’s his name with the addition of 365 added to it. The second is a little more difficult as it’s more personal to my sons. Little Monkey’s second hashtag is “#daysof[littlemonkey].” So for little bear, I came upon “#ameasureof[littlebear].” It fits because we’re going to see his measure once he’s born. He’s going to show us just how strong he is and how much of a fighter he is. This phrase really resonates with me because while I know 2017 is going to be hard, I am excited about seeing where we’re going to grow as a family. I am excited about seeing just how strong we all are, and I am excited about when we can bring little bear home. There is a certain amount of sadness just with all of the changes coming and especially when I look upon Little Monkey and know my days with him as an only child are truly numbered. 83 days (give or take a few days) to be exact. We’ll come to know the measure of Little Monkey too as he adjusts to his new sibling.

There are a lot more things I am having trouble putting words to that rest beneath “A Measure Of” but I know it’s the right word for this coming year. There is something unique and wordless attached to the picking of your word of the year. I used to poo-poo the concept, but now that I have done it for several years, I understand how having a word to cling to, to view the year through, helps. It helps give you strength for the year, it gives lens through which to process the happenings of the year. So as we face this difficult journey, I am grateful I have a foundation to start building experiences on.

Do you have a word for the year? What is it? And what are your reasons?

A Shifting Perspective

At the beginning of this pregnancy, I had this intense feeling that this pregnancy would be hard. I didn’t know what that would look like, but I just knew it would be a lot harder than Little Monkey’s. Sure enough, I hit 6 weeks, and HELLLLOOO nausea. That lasted, well, I’m still dealing with random nausea off and on and I’m 26 weeks today. Then at 16 weeks, I started bleeding from a placenta previa, which meant low activity levels for several weeks to give it a chance to shift. By 20 weeks, placenta previa was no longer an issue, but instead we were facing an entirely new set of difficulties.

My little bear has Spina Bifida, and that meant and entirely new perspective on this pregnancy. I went from preparing for what I had hoped would be a natural birth, working with midwives, a doula, to now a planned c-section at Children’s hospital, where my little bear will be taken directly to the NICU upon delivery. While I don’t have any issues with having a c-section, it’s the whole major shifting of what to expect with this pregnancy. Instead of going in for regular midwife appointments, I’ve had more ultrasounds than I can count, a fetal MRI, blood tests, an amniocentesis done, and there are still more tests and ultrasounds coming before he’s born. I am now the 1 in 1000 who’s baby has a serious condition. This has been hard, really hard with watching so many other friends around me carrying and delivering healthy babies. Babies they get to take home after 24-48 hours. Babies they get to snuggle and hold tight within seconds of being born. Babies who are whole, healthy, and dare I say, normal?

Sure, some days are a lot worse than others. Some days are actually okay days and I feel like I can manage without feeling like I’m drowning. The hardest part isn’t that I don’t think we’ll be able to do this, no that’s not it. I know we’re really going to be okay. Phil and I are in this together, we have a lot of support already, and I have the resources I need from moms who have gone before me in this specific journey. But there is a part of all of this that makes me feel very frustrated. I know there are other mamas out there who have gotten this same terrifying diagnoses. I know there are other mamas who have and will stand anxiously besides that NICU crib watching their newborn. We live in a culture that tries to silence the difficult. We live in a culture full of people who don’t want to face the hard, tearful stories of those who don’t have the same stories. Because of the culture we live in, I want to break the silence and really talk about what this has been like and what it’s going to be like finding out my son has a serious condition.

My depression has been hard over the past month. I already have an underlying depression that while I can manage it quite well, peaks every so often. With this whole shift in my pregnancy, well, let’s just say this is the highest it’s peaked in a long time. I have coping techniques, but when combined with the approaching third trimester fatigue, feeling like I’m drowning under the constant inflow of information, it’s been a bit much. The story of my life has never fit inside the “normal” box. I do not fit norms. I never have. And with this pregnancy, it is once again on the outside of those norms. When mentioning this to my mentor, her response was to tell me that maybe I’m supposed to go against the norms in order to create new norms. So maybe that’s my job in this life. That’s what I’m called to do.

I’m hoping over the coming months as I start to prepare for the planned c-section and the following who-knows-how-long NICU stay, I will be able to share things that are helping me. For now, I am clinging to movement little bear has in the womb, and the fact that I already feel a deep, strong connection to him. I still have days where I wake up and hope this is all a dream, but it isn’t, and I will face whatever may come.