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.

 

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How to Help – practical tips for helping a family in need

** I will get to a list of practical things after a brief narrative, so bear with me! **

After Little Bear’s first surgery on April 13th, we thought maybe things would be okay. His incision started swelling within two days after surgery, I took him in to get checked out a week post surgery, then 5 days later, we ended up in the ER at Children’s because his incision had suddenly started leaking. I already knew what the protocol was because we had discussed it at length when he was still in the hospital after that first surgery. We rushed him in to Children’s, sat in the ER for an hour, then was moved up to the surgical center where Little Bear was taken back to have a drain placed. Surgery number 2 in less than two weeks. The protocol was monitor him for three days to make sure he didn’t have an infection and then decide whether to do a shunt or repeat the ETV (Endoscopic Third Ventriculostomy) and do a CPC (Choroid Plexus Cauterization) at the same time. He had an MRI before the second surgery to make sure the ETV was still open and working. When the drain was placed, his surgeon checked the ETV and found that yes, it was still wide open. Which meant that while the ETV was technically working to drain excess fluid from Little Bear’s brain, it wasn’t working enough.

Friday the 28th was the third surgery. And we decided to go for the CPC. His surgeon wasn’t ready to give up on the ETV yet and after asking quite a few of his colleagues, he said he felt comfortable doing the CPC. Que waiting, once again, in the waiting area of the surgical clinic, passing the time and watching the clock. Two hours later, his surgeon came out and said he felt really happy with how the surgery went. Another half hour and the anesthesiologists came out and said Little Bear was on his way to recovery and they felt things went well too. They came out to get me to take me back to Little Bear, and as soon as he was placed in my arms, I knew something was wrong. The very first thing I noticed was his eyes looked really unfocused even though they were wide open and flashing around. I asked if he could see all the while taking in that his limbs were stiff and he was making an awful grunting/gasping sound.

About 20 minutes went by of the nurses asking me interrogating questions about Little Bear’s behavior, them calling down the anesthesiologist, then calling back his surgeon when they realized he wasn’t reacting to the morphine and his heart rate was extremely high. At one point, his oxygen levels plummeted and the nurses starting preparing the oxygen masks just in case he was going to code. As soon as his surgeon got to Little Bear’s recovery room, he said it looked like my baby was having a seizure to which everyone jumped into high gear. They gave him adavan and keppra to help stop the seizure then rushed him down to get a CT scan to make sure there weren’t any clots or hemorrhaging. The scan showed a pocket of air that isn’t uncommon after a brain endoscopic procedure. Uncommon or not, it was still one of the scariest things I have ever experienced. Even a week and a half out I am still feeling blindsided by the echos of the terror and panic I felt watching my child and the helplessness knowing there was nothing I could do.

All of that to say, there were multiples things that friends and family have done for us over the past three months that have been very helpful, and even some things that weren’t so much. So here’s what I’ve been able to come up with as far as practical tips about helping families in our position.

  1. Offer Specific Help
    I came across this article a few weeks ago and while it deals with sudden grief and trauma, I found it helpful. Being in the midst of a crisis (having to rush Little Bear to the ER, terrifying recovery after surgery…) means the ability to respond to “let me know if there is anything I can do for you” disappears. Someone came and got Little Monkey (since he was with us when we rushed to the ER) and took him to play with their kids all day while we sat at the hospital. Someone brought Phil and I lunch while we waited for Little Bear to get out of surgery #2. Someone came and stayed overnight with me at the hospital after surgery #3 so I could get sleep and somewhat relax knowing someone had eyes on Little Bear at all times in case he had another seizure. In the few weeks following Little Bear’s sudden arrival, we had multiple people just drop off meals on the front porch. We are grateful for everyone who has offered to watch Little Monkey, bring us groceries, drop by a meal, or to simply come sit with me so I’m not by myself at doctor’s appointments or at home.The more specific the offer of help, the more helpful it is. I am so grateful for those who have just dropped by a meal, stopped by the hospital, called or texted, or even just sent us a gift card to Starbucks or a meal delivery service. These are the things that have helped the most.
  2. Check In 
    This may seem like a “duh” thing, but I have had multiple people say they didn’t want to bother us or intrude so instead kept their distance. The thing that’s meant the most in everything we’ve been through is the people who have left a message, sent a text, or email, just letting us know they’re thinking about us. Even if we can’t respond to every message, knowing we’re not totally alone in all of this has helped a lot. I think in an effort to “not intrude” most people draw back too much and end up unintentionally isolating the family going through the difficulty. We will let people know if it’s too much, but don’t hesitate to check in.
  3. Don’t Take Anything Personally
    I don’t think this has happened, but the emotions of having to deal with what we are facing are messy. It’s a big effing mess and some days I honestly just want to lash out and hit something because things are too much. The hardest part is as parents trying to wrestle with the overwhelming emotions that we’re facing. Unless you have been in the same position with your child, it’s hard to explain just how overwhelming it is. So if we don’t respond, or shut people out, it’s because things have become too much, but don’t let that stop you from checking in or offering help. Oftentimes it’s in those moments we need the most help or someone checking in means the most.
  4. Don’t Tell Us About Your Friend’s Brother’s Son Who Has ______
    This is something that’s been happening since we first got Little Bear’s diagnosis. While I assume someone telling us that their friend’s brother’s son has spina bifida is an effort to relate to us or maybe even try to encourage us, it is the least helpful thing anyone can do for us. This applies to any sort of condition someone may be diagnosed with. Even though I don’t always care for this response, it’s better to simply say “I’m sorry you’re dealing with this…” than to tell us about your friend. Every person it unique, every diagnosis is unique. It’s very easy to get false hope by reading someone else’s amazing story who has the same diagnosis. It’s also very easy to become extremely discouraged and scared by someone else’s story too. So for the parents’/individual’s sake, do not share anecdotes about someone with the same diagnosis.-
    and last but not least…
  5. Care Packages Help…A Lot
    The random cards and packages we’ve had show up have helped make our days just a little easier. So if sending care packages is your thing, then send things that help the parents or individual take care of themselves. Whether it’s gift cards, something you know they enjoy (candy, makeup, bath bombs, candles, scarf, figurine, movie…), or a bunch of random quotes that mean something special, do it. The little things mean so much more when the rest of life is in major chaos.

I don’t mean for this post to feel like I’m pointing fingers or anything like that. I just know friends have been struggling with trying to figure out how to help us. These are the practical things I’ve been able to come up with both from watching others and from our personal situation.

Thanks for reading, and I do hope this post has been helpful.

 

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

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 is Spina Bifida? – Our Little Bear’s Specifics

When receiving a diagnosis such as Spina Bifida (or commonly referred to as SB), a lot starts running through your mind. “What the f*ck is spina bifida? Will my baby survive? Oh my gosh, I am going to be a special needs parent?” just to list a few of the questions that erupt following this diagnosis. As I’ve carefully done research, reached out to people I could trust, and asked the specific questions I needed answer to, I have realized that many people simply do not know what Spina Bifida is. The scariest part is that a lot of healthcare professionals don’t know what SB is either. This is the worst part, and the reason why 64% of babies who are diagnosed with SB are terminated. Doctors simply do not have the knowledge to be able to give parents the resources, hope, and help the parents need to be able to provide for their child.

All that to say, I am amazed at how that has not been our experience with our doctors so far. I suppose it helps that we’re within short driving distance to one of the top SB centers in the country. Our doctors deal with this diagnosis and children with SB on a day to day basis. This is their specialty. Because of that, beyond the “required to tell you that termination is an option” moment, our doctors have given us nothing but hope, knowledge, and have been upfront with about what they see with little bear’s case.

So before I dive into the descriptions of what SB is, I wanted to say this first; I have no idea what the next year, years, will bring for us. I certainly would never have chosen this parth for us, and I hate that we’re having to go through it. If it weren’t for the intense love and connection I already have with little bear, things would be even harder to handle. This is not an easy road to travel. It was horrifyingly difficult to walk away from the appointment where you first heard something is wrong with your baby and to remember the earth keeps spinning. It really does feel like everything ceases to move and goes ghostly still. You all of a sudden went from a happy go luck mama in the middle of her pregnancy to the mama of a baby who is going to have to have surgery within hours of birth. You’re going to have to stand there and watch while they most likely go through painful procedures. I’m not even there yet, still got 11 weeks left, but I am having nightmares of watching my little bear in the NICU, unable to take his suffering from him. I think the mamas I am watching who have gone through this already are absolutely incredible warrior mamas. I am going through my initiation by fire right now, but I know I am joining their ranks.

What is Spina Bifida? 

SB is a neural tube birth defect that happens within the first 28 days of pregnancy. This means that typically before you even get that first positive pregnancy test, the defect is already in place. There is nothing you as a mama can do about it. Talk about feeling insanely helpless! The Spina Bifida Association (SBA) talks a lot about how you can take massive amounts of folic acid that could maybe possibly prevent SB. But I find this particularly irritating as they imply that SB can be the result of a lack of folic acid. And yet, here I am, faithfully having taken my prenatal vitamins for the past 5 years! And I still have a son who has SB.

Spina Bifida means “open” or “split” spine in the original Latin. SB is what happens when part of the spinal cord does not close properly and leaves an opening or deformity in the spine.

**An important thing to note about SB is that no one case is the same. It can be referred to as a “snowflake condition” because of how unique each individual case is. It is not as clear cut as a spinal cord injury can be. There is no blunt cut off of nerve affected.**

The opening in the spine is often called a lesion or cyst. The location of the lesion or cyst can play a significant role in the baby’s function AFTER birth and as they grow up. For little bear in particular, his lesion is between L4 and L5. While this is as preferable as best best case scenario, it is still considered a very good location. The lower the better as this puts less pressure on the brain and spinal cord. Also, the nerves lower down do not affect significant areas of the body such as breathing and major organ function.

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These are helpful pictures that explain what would be most likely affected according to lesion location.

There are four different forms of SB:

  • Occulta – this is the mildest form of SB. Typically only one or two vertebrae are malformed and a complete layer of skin covers the deformity. I have noticed that this form of SB usually isn’t discovered in children until later when they start having odd symptoms. I hesitate to use the words “this is the most common” since SB does not present itself the same way with each case. However, it is truly the most mild.
  • Closed Neural Tube Defect – similar to Occulta, this is a deformity in the spinal cord, but it can present itself as a deformity of fat, bone, or meninges. Once again, the individual with this form of SB can exhibit little to no symptoms, or it can present itself as full blown paralysis.
  • Meningocele – this form of SB is where an actual cyst of fluid forms over the opening in the spine. According to my research, this cyst can still contain parts of the spinal cord, but it doesn’t usually contain the nerves. This cyst may or may not be covered with skin. Also, the individual may have symptoms ranging from paralysis to little or no symptoms at all.
  • Myleomeningocele – this is the severest form and from what I’ve seen it seems to be the most common. Just like it’s partner form above, this also includes a fluid filled cyst, but the nerves are often included within the cyst. I believe this form also means that there is usually no layer of protective skin over the cyst. That means there is no protection from the amniotic fluid getting into the cyst and potentially causing further damage to the exposed nerves. And finally, the levels of damage, or symptoms, for this form of SB are once again all over the map.

So, talk about “snowflake condition,” right?! There is no way to anticipate how the individual will exhibit symptoms or what nerves have been impacted or what kind of mobility limitations they will have. Even if a child has full range of mobility when they are born through their toddler years, that is not a guarantee they will have full mobility when reach adulthood. It is slightly panic-inducing writing out these types of SB. As a mother, I want my little bear to have the least severe if he has to have SB. But, he has the severest type, about as close to best case scenario we could get, but still, knowing that’s the category he falls under is heart wrenching.

Common Side Effects of Spina Bifida

Because of the opening in the spinal cord and the pressure on the cord from that opening, this creates something called a tether. As the nerves are exposed and often “float” out of the spinal cord, this pulls down and puts a certain amount of pressure on the brain itself. The brain is pulled down and back towards the skull. This causes an increase in Cerebrospinal Fluid (CSF) as the cerebellum begins to block the spinal cord and the CSF from circulating. Because of the pressure and blockage, the Choriod Plexus gets a message to increase products of CSF which in turns causing the extra fluid in the brain. The extra fluid (depending on how much swelling is seen) is usually called Hydrocephalus. The most common way of dealing with Hydrocephalus is the insertion of a shunt in the brain. A shunt helps release the extra fluid usually through a tube that snakes its way down the body where the fluid is then released and absorbed back into the body via the abdominal cavity. There is an unfortunate 50% failure rate for the shunts. Thus there is often a need for multiple revisions (usually in the form of surgery) for a shunt once it’s placed. I have heard of several new techniques being perfected to replace the faulty shunt system, but as those are still considered experimental, our neurosurgeon isn’t willing to try those out on little bear as this time.

Other common issues associated with SB can include club foot/feet, heart issues, bowel/bladder issues, total paralysis (from the hips down), partial paralysis, kidney issues, Chiari Malformation II, and the list goes on.

Little Bear’s Specifics

His lesion sits right between L4/L5 vertebrae. This area on the spine specifically deals with the outer parts of the lower legs and feet. The chances of him having bowel/bladder difficulties are pretty much guarantee. To what extent will not be known until he’s born and his body settles after surgery. That is something we’ll work with a urologist and pediatrician with once he’s born.

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the darker shadow in the middle of the circle is his spinal opening

He has a secondary condition called Chiari Malformation II. With his spine being tethered, the cerebellum is being pulled back down towards the back of his throat. From my understanding, this is basically something that goes hand in hand with SB. I do not remember the number, but very few kids actually end up presenting symptoms from the Chiari and it is just something that is there. He does not have club feet and so far has awesome movement of his legs from hips down and obviously bends his knees. Ankle, foot, and toe function won’t be known until he is born. It is nerve wracking, this waiting and not knowing.

All of our genetics and chromosomal tests have come back normal/negative, so we can breathe easier on that front. His heart has been cleared and structurally, besides the lesion and fluid in his brain, he has been declared a very sound little boy. The fluid in his brain is currently measuring at 13mm, but this doesn’t really mean anything. Normal brain fluid typically measures at 10mm or less. We will most like see his numbers rise as he continues to grow between now and birth. It will be the numbers AFTER birth that will actually mean something and be important.

Our little bear has a perfectly formed body, organs, and so far as we can tell, is absolutely cute as a button. His profile looks just like Little Monkey’s did during big brother’s ultrasounds. He is growing at the rate he should, has beautifully long fingers, and feet that look just like his brother’s. He likes to remind the ultrasound techs that he’s going to make them work for their measurements by flipping around and making funny faces. It is bitter sweet feeling his strong movement. I love that he is so active but that does not guarantee anything regarding his mobility after birth. We have another ultrasound a week from tomorrow, so hopefully that will be routine and nothing new will show up.

I am constantly learning more information about SB and while this is a long post, thank you for reading all the way through. The medically intrigued side of my brain finds all of the medical information thoroughly fascinating…until it hits me that this is all regarding my precious baby. It feels like I’m on a never ceasing up and down roller coaster ride. But I think for now, I am okay. I can breathe. I can keep moving forward and I will try my darnedest to make sure that we have everything lined up as much as we can before delivery day gets here.

#wewillbeokay

Planned vs. Natural

I’ll admit Pinterest is my go to thing for when I need to do something mindless. It’s the place I actually do a lot of research, collect recipes, and ideas for my makeup blog. It is the place I have my boards full of hundreds of pins specifically about birth, pregnancy, child care, toddlerhood, and the like. When I was pregnant with Little Monkey, I had a secret pregnancy board and collected a lot of various articles that actually helped me prepare for his birth and nursing afterwards and taking care of a new born. With little bear, I knew what I wanted to learn specifically about for his birth. I was in the middle of researching specific natural birth techniques when we got the news. While I do not have any problem with having a planned c-section, it is very different from planning for a (hoped for) natural birth. Because of this, Pinterest has suddenly become a sort of unsafe place for me as it keeps reminding me of the other pins I have pinned regarding natural birth.

But here’s one thing I didn’t expect to have trouble with. There is almost none to little research or resources for mamas preparing for a c-section. Yes, while I know it is an actual surgery, and there isn’t much one can do to prepare for it, I find this frustrating. I am a planner, researcher, I dig to find information about specific things. I zero in on a part of a plan, I try my best to understand the most I can about specific things. I don’t just randomly and blindly research, I am very particular. So when this shift came, I am felt thoroughly lost because I no longer have something to plant me feet on. I do yoga several times a week (or try to, this fatigue is killing me now!) and part of that routine has included hip opening poses and squats. All in preparation for labor and delivery. But do I keep doing those poses now? Do I keep working on keeping my hips strong and using an exercise ball in the comings week to open my pelvis?

With so many things up in the air and theoretical right now, I need the practical to rest on. Make sense? It isn’t helpful to hear I just basically sit and wait for the c-section. “It’s not that big of a deal.” Sure, maybe not, but I’m not even allowed the luxury (not really) of going into natural labor. I don’t get to put to use all of the things I learned from Little Monkey’s birth, I don’t get to chose. While the predictability of a planned c-section is very helpful for making sure Little Monkey will be taken care of, it’s the so now what that gets me. I can only handle so much unknown. I can hold it together if I have practical things to do between now and when little bear is born.

So through the research I have found, which is pretty much nothing, the only thing I can possibly do to physically prepare for the c-section are gentle core exercises. The examples I’ve found are specifically for pregnant mamas and yes this is something I can practically do, it’s maybe not enough. I have my list of what to pack in my hospital bag for the c-section AND for the NICU stay, but what else can I do? I asked one of the midwives I see, and even she couldn’t give me advice or resources of what to do. There are plenty of articles and resources and advice for what to do AFTER a c-section, but once again, nothing for what to do beforehand.

I had abdominal surgery almost a year ago to remove my gallbladder, so at least I have some idea of what to expect post c-section. However, this still doesn’t feel like enough for me to hold on to. I’ll post more once I am able to put some sort of game plan together! And I will share my list for my hospital bag when as well.

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.

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!