Struggles of Having a Preemie with Special Needs

I knew before Little Bear was born that there would be several things we’d have to deal on top of typical newborn adjustments. But when we had to add him being a preemie into the mix, that further complicated things.

A typical preemie (without complications) will be roughly behind developmentally according to what their “corrected” age is. Preemies have two “ages;” actual and corrected. Actual age means the age they are according to how many days/months/years from their day of birth. Corrected age means taking the number of weeks they were born early and subtracting that from their actual age. Example: Little Bear was born at 34 weeks old, so he was 6 weeks early. He is two days shy of 5 months old, but he is only 3 1/2 months old via corrected age. All of that complicated jargon means his developmental abilities should line up with being 3 1/2 months old. BUT, Little Bear is not a typical preemie. We have to add in his spina bifida and how that affects his development.

The added complications of his SB include a bigger (and heavier) head than an average baby, not having a much strength in his core, and while his legs are strong, he doesn’t have a lot of toe/ankle movement. Just today he has started being able to push himself up in a “baby pushup” position when on his stomach. He is getting better/stronger at holding his head steady when he’s upright, but he still wobbles a lot. I’m noticing that he’s a lot more attentive than Little Monkey was. Little Monkey never missed a beat but he also acted like he couldn’t care less what was going on around him. Little Bear on the other hand can’t wait to see what’s going to happen and is quite involved in what’s going on around him.

It is hard at times to see other mamas share pictures of their babies who are the same age as Little Bear and know they’re able to do things he can’t. Although, I love my Little Bear just where he is, and every day he does something new that surprises and delights us. He’s a lot more grabby than Little Monkey was. Little Bear LOVES putting things in his mouth and is constantly sucking and gnawing on his hands and fingers. He has almost rolled completely over from back to stomach multiple times and has rolled over from stomach to full back once.

These are the only additional complications Little Bear’s SB brings to the picture. He was finally cleared by Urology a few weeks ago to stop cathing. We have been cathing him since he was born as neurogenic bowels and bladder are basically a guarantee with spina bifida babies. The reason we cath is to make sure that his bladder is emptying fully and there isn’t any urine going back up into the kidneys. For now, we are cleared to stop the cathing because any urine his bladder collects, he pees right out. That will become an issue when he’s old enough to potty train and then we’ll have to consider thing for “social cathing” so he can wear underwear. Bowels on the other hand have been the big issue the past week and a half. About a week ago I found blood in his stool and ended up taking him in to his pediatrician. We decided that the most likely culprit was a probiotic I tried for him. I haven’t seen any obvious blood since last Friday, but when I took him in yesterday, the swab test of his diaper showed positive still for blood. This is frustrating because now it’s just anyone’s best guess. He hasn’t been acting off, nor has he been acting like his stomach is bothering him, nor have I changed my diet at all. (*PLEASE DO NOT give me suggestions as to what you think it could be…that is not helpful to me right now*)

I’m also in the process of switching pediatricians as well. I want Little Bear to see a ped at Children’s. This is a dual purpose action; all of his records will be in one place, and that pediatrician will have more experience with the extra needs that come along with Little Bear. So all of this bowel stuff is happening as a difficult time as I can’t get him in to see specialists at Children’s for this until we’re a part of the child health clinic, which won’t happen for at least another week and a half.

I am grateful to be making mama friends whose kids have spina bifida as well and I can ping them for advice or simply moan and groan and they get it as they’re dealing or have dealt with similar things. I’m slowly gathering my “tribe” of people around me and it helps to not feel so alone and overwhelmed. We are two months out today from his last surgery, and things are still looking really good. His surgeon wants to get Little Bear past 6 months old before he’s willing to declare this a success. It’s a really comforting thing to know that our neurosurgeon is the chief investigator  at our local Children’s for a major (major – includes surgeons from all around the country and in Canada) hydrocephalus study. So he really does know what he’s talking about. And Little Bear is known by name by all of the other surgeons in that study because of the surgery he had being the first our surgeon had done of its kind at our Children’s. A lot of experts are pulling for Little Bear, as well as many people all over the country.

The good that’s happened recently is how much Little Bear is noticing his big brother. He immediately looks for Little Monkey and just watches and smiles at him. I can’t wait for Little Bear and Little Monkey to get into trouble together. Both of them have the same mischievous grin. Little Bear is pretty much sleeping through the night now. Which means I actually am getting sleep. Little Bear loves his sleep quite a bit more than his older brother. I actually have to wake Little Bear up in the mornings most days. I’m learning to let the mornings go and just do what I can with getting breakfast for myself and Little Monkey. But I have noticed that Little Bear has pretty much put himself on a napping schedule much like Little Monkey did when he was that age. So yay! Our life does have a little bit of order among all of the chaos.

 

Advertisements

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.

 

 

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.

Letter To Little Bear

November 7th, 2016
My dearest little bear,
Did you know that I knew you were coming to join us even before I was pregnant? I felt your presence, the happy, bubbly, excited presence just waiting to join our family. We kept telling you no, we weren’t ready yet. Mommy had to get her health in order and then heal. Then came the day we said we were ready and I knew you wouldn’t waste any time in hurrying on your way. Sure enough, 21 days later, I got that first positive pregnancy test at 3 ½ weeks pregnant with you. I felt sure you would be the little girl we really wanted, but the biggest thing was how strongly I felt you from that first moment. It was different, it wasn’t the same feeling I had when I got the first positive test for your big brother. I knew you were going to be one heck of a special kid and I felt your happiness at being on your way to join our family. That was the beginning of the thread tying you to me.
Then at 14 weeks, we found out you were a little boy. We were in shock, both your daddy and I thought you would be a girl, but after several days of processing and talking it over, we suddenly realized how absolutely exciting it was going to be to have two boys. Ender would get a brother, and we couldn’t wait for you to meet him. We love both of you so much, and as soon as we settled on your name, I felt reconnected and in fact felt an even stronger thread forming between you and I. You became my little bear, me your mama bear. I felt a deep love begin to run between your heart and mine, I would do everything in my power to make sure you were safe. Two weeks later, I woke up to blood, enough to destroy what I was wearing. My first thought after the initial gut wrenching shock was I am not going to lose you. I shakily called my midwife as I mentally ran through the list of symptoms. I was relieved I had no cramping, you started moving within a half hour of me waking up, and I didn’t even smell fresh blood. The midwife was reassured as well, but still wanted me to come in the next morning for an appointment and ultrasound. I was diagnosed with placenta previa and three subchorionic hematomas. But you were quite happy, flipping and kicking, I even felt a lot of your little but strong kicks. They told me we’d just monitor the placenta previa, but they weren’t worried about you. I felt relieved that you were okay, that’s all that mattered, I need my little bear.
One month later on Wednesday, October 26th, 2016, as I approached your 20 week ultrasound and a recheck of the placenta previa, I said goodbye to your daddy who left for a business trip the morning of my appointment. I dropped your big brother off at a friend’s house, and drove to my appointment. I felt positive and excited to see you again, and quietly laughed to myself wondering at how active you would be this time. I didn’t have to wait long before I was brought back to the ultrasound room. Sure enough, you started showing off your beautifully long fingers and strong kicks and as always had your hands tucked up by your face. You were head down and halfway through the ultrasound started burying your face against my back and just tucking yourself in. I noticed a change in demeanor from the tech, but didn’t really think much of it. I waited in the front lobby for my midwife appointment, and happily sent off texts to friends of your long and perfectly shaped feet as well as the good news that the placenta had moved and I was all cleared of placenta previa!
As I waited for the midwife to come in, I sent pictures to your daddy and gave him the good news that you were growing right on track! Then came the gentle knock on the door and a slightly traumatized looking midwife walked in. Sirens immediately went off in my head as all else stilled while I waited for the bomb she clearly was about to drop on me. She told me that they saw two very concerning things on the ultrasound and wanted to send me to see a specialist. She tried to explain the best she could about what they knew. You had extra fluid on the brain (which I mentally filed away as the thing they weren’t as concerned about) and you had what looked like a cystic tumor at the base of your spine. This was the big concern and they were worried about possible spina bifida. I tried to take that in, even as you kicked away in my belly, and suddenly the shock hit. Something really was wrong with you and they really were very concerned. It was one of those moments I’ve read about but never expected it to happen to me. It felt like a betrayal as you kept moving. I wanted you to echo this news, I wanted you to tell me something was wrong. But no, you kept moving, you kept telling me, “mama, I’m okay. I am okay.” 15 minutes later, as I tried to slow down the sobs, I managed to make it out the door and to the car. I needed your daddy so badly, but he was 2000 miles away. I called him and sobbed in his ear what the midwife explained to me and that I needed to go see a specialist ASAP. So many things raced through my mind as well as absolutely nothing. Driving back to pick your brother up, I felt like I barely had a grip on reality. I couldn’t reconcile something being wrong with how active and how healthy you seemed. I felt like I was in my worst nightmare and felt so lost. The few friends I contacted right away were trying to make sure I was okay and to let me know that they were there for whatever I needed.
Later that evening, I frantically called the midwife on call to make sure that you would be okay, I hadn’t even asked if there was now an increased risk to you. I couldn’t lose you. I couldn’t understand what was suddenly going on, but I knew without a doubt that you are my child and I would do everything I could in my power to protect you. The midwife reassured me that no there was no more risk to miscarrying you than there was before.
The next morning I called the specialist’s office and set up an appointment for the following Monday, October 31st. As I hung up, I realized that I had to really wrestle with something. I had to prepare myself for the worst. This was my way of being able to prepare myself for the “thing” that was coming. I had to decide whether I could do this, I had to accept that I could become a parent of a special needs child and was I willing to do that? I realized I had been prepared for this, and while I still couldn’t answer a solid yes or no, there was no way I would ever let something happen to you that was within my control. You are my little boy, you are my little bear, you are the one who has grounded me within myself more than anything else. You hold such a strong thread to my heart that to break it would utterly destroy me. Your daddy needs me, your brother needs me, and I need you.
I felt weird, still pregnant, still mama to Ender, but it all changed. Those doubts of what did I do that caused this kept trying to work their way in. I didn’t know anything about spina bifida and I refused to do research about it. I couldn’t risk overwhelming my already shaky mental state by reading horror stories and things that simply would not help. Your daddy got home three days later, and by that point, I felt like I could face what was coming on Monday. I didn’t know what would happen, but I knew we were in this together, your daddy and I would face this new obstacle together and we were going to make it. We would come out with you and Ender and be even stronger because of this.
You kept moving, it felt like your movements were only getting stronger, and with every kick and flip, it felt like a personal message to me, reassuring me that you are okay.
One week ago, my little bear, we found out the official diagnosis. I felt nervous but it was a nervous energy of just wanting to have answers. We were ready, we were confident that whatever was wrong with you we would be able to take it. During the ultrasound, the tech showed us exactly where the cyst was, and as I looked on the screen, my heart kind of sunk seeing the cyst really existed. She explained what we were looking at, and then showed us the fluid in your brain and explained that yes the two were connected but she was going to let the doctor explain exactly what that meant. She left the room and went to consult with the doctor before he would come in and explain in detail what was going on. I lay there on the ultrasound bed and your daddy sat in the chair, both of us nervously waiting for the official diagnosis. I felt you shift and move as you settled after the ultrasound. It took about 10 minutes before the specialist knocked on the door and walked in. He introduced himself and I felt immediately at ease. I could tell this guy knew what he was talking about and we could trust him. He sat down and immediately started explaining what they had seen on the ultrasound.
“Your little boy has something that we call spina bifida. Now, let me explain what that means and what we see.”
He went on to explain what spina bifida meant, and then specifically what he could tell us about your case. He told us this was just about best case, they prefer it one vertebrae off (I can’t remember if that was one more above or below where your cyst starts) but that this was a very reassuring prognosis. He was very happy to see how active you are and especially that your legs are so strong. I was so proud of you in that moment with how difficult you make ultrasound techs work to get your measurements. I know you’re a fighter and that gives me hope. The specialist answered more than half our specific questions before we could even ask them. Then when we asked more questions, he answered those to the best that he could and told us he was impressed that we were asking the right questions and thinking of things he would want us to consider. After he left the room to start getting the referral to Children’s set up for us and to get the kit for an amniocentesis for me, the tears filled my eyes as I realized this changes our entire life moving forward. It was helpful to hear that you aren’t in pain and won’t be (besides the surgery you have to go through after birth) and that this will always be your normal.
The specialist gave us so much hope and understanding of what we are going to be facing over the next 3 months before you get here, and what your life could possibly be like after your birth. I am so very grateful that you will have access to some of the best care available for spina bifida in this country. Fate knew we needed to be in Colorado when we moved a year and a half ago, and I couldn’t be more relieved to know that you will be brought into a world that is more than prepared to help you thrive. Daddy and I will be with you every step of the way, Ender will be eagerly waiting by your side to cheer you on. So many friends and family are already anxiously awaiting your arrival so they can pour their love and care on you. It makes me cry to know that you are already so very loved and your fan club is rapidly expanding as more people come alongside mommy and daddy and Ender to help support us and care for us. Because of you, my little bear, we have the community we have needed and you are restoring our faith in humanity.
You are our little bear, you are so special to us already, and you are so loved. Your daddy and I are so proud of how strongly you are fighting now. I cry just thinking about how I can’t wait to hold you and see you and for you to meet your daddy and big brother. Your daddy can’t wait to introduce you to virtual reality and give you access to the incredible world of computers and technology. I can’t wait to have both my two boys, my little bear and my little Ender monkey, in my arms.
The next roughly 15 weeks are going to fly by, and I can only hope that you will use these weeks to your advantage and continue to prove to the doctors just how strong you are.
I love you, little bear, with all of my being,
Your Mama

Introduction to A Measure Of…

As I write this, I am 26 weeks pregnant with our little bear, who was diagnosed 6 weeks ago with spina bifida. It has been a difficult journey so far, meeting with specialists, and watching my entire game plan for this pregnancy change. There has been a lot of good things, but it is still hard.

It is hard to watch the plans and hopes and dreams I had for this last pregnancy literally fall through my fingers. You have this idea of what things are going to be like and when things change so drastically, it does take time to recover/reboot. Going from wanting and hoping to have a natural birth with midwives to a scheduled c-section has brought to light a lot of issues. The biggest being there is very little support for mamas who get these kinds of diagnoses during their pregnancies. My goal with this blog is to not only share Little Bear’s story but also to build a safe place for mamas to find support during difficult pregnancies and the following days, months, and years of their children’s lives.

Thank you for reading and I sincerely hope you find this blog helpful, encouraging, and please know, you are not alone!