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.

 

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.

 

All Things Little Bear

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Happy One Month, Little Bear

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

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

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

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

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

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

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

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

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

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

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

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

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

The Brutal Truth – I’m not okay

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Little Bear came home this past Monday. And for the first two days, we got a lull in the chaos of bringing a baby home for the first time. Then on Wednesday, he had his first pediatrician appointment. I had asked Little Monkey’s pediatrician if she would feel comfortable being Little Bear’s pediatrician. She immediately said she would be his pediatrician, and she actually called me the day after he was born and I was still in the hospital. I must have put down her name somewhere saying that she would be his pediatrician (although I have no recollection of having done so…must have been when I was in labor before the c-section…). She wanted to check in and find out how everything had gone.

A little background about this amazing doctor. When we first moved to Colorado, Little Monkey needed a pediatrician and I did what I’ve always done with finding new doctors (pretty much close my eyes and point and then go with whatever doctor is under my finger…) and I happened to pick her. We saw her for two of Little Monkey’s appointments, then I found out that she had left that practice. I was so bummed, I really liked her and Ender responded well to her! So I found out which practice she had moved to, and we followed her. She was thrilled to see us at his next appointment. She remembered Ender and that meant a lot to me. I felt like she cared more for my child(ren) than other doctors I’ve seen. So of course I wanted her to be Little Bear’s doctor.

At his appointment with her on Wednesday, she almost made me start crying. She was so impressed with Little Bear and his progress (he had already gained 5oz since getting discharged two days before) but she also took a lot of time to learn everything she could about his stay in the NICU, his incision, the steps for future care, and wanted to be as hands on as possible with knowing how he was and is doing. She stopped at one point and turned to me and asked if I was doing okay. She wanted to make sure I didn’t feel too overwhelmed or like I was alone with all of his care and appointments and everything. She told me that she would do everything she could to make sure I/we didn’t feel overwhelmed and would help with everything she could as well.

It’s a double edged sword having so many medical professionals coming alongside us and giving their support and genuine care for us and Little Bear. While I greatly greatly appreciate the support we’re getting, it is also a bittersweet reminder of WHY they’re so supportive. That reminder that this will be our life from here on out. I started losing it on Thursday. I had received so many phones calls about new appointments for Little Bear. It was like we got those first three days of him being home to settle and find a rhythm and then boom, Thursday, it was like the flood gates had opened up and wave after wave of things necessary to his care kept being pushed towards me. I sat there looking at my calendar and felt my heart sinking. Some appointments won’t be for another two months, but others, some very important ones regarding his head, will be three days in a row of appointments this next week. I texted a fellow mama warrior and asked if the appointments ever end. Will he ever get to be a normal baby?

I am the mama of a baby who is on borrowed time right now with his head. I am shocked we got sent home from the NICU with Little Bear NOT having a shunt. That waiting, that watching is nerve wracking. 85% of spina bifida (myelomeningocele) babies end up with shunts. Some not for a good bit after being born, some the day they’re born, some a week later. But that 15%? Yeah, I feel like expecting/hoping Little Bear to fall into that small percentage is way too presumptuous. Something has to go wrong…Right? Or is he going to keep breaking the barriers and proving everyone wrong? Of course as his mama, I’m going to be cheering him on every step of the way, but I still worry about the what ifs, the probable maybes.

It’s difficult for me to put into words the feelings I get when I look at my baby in someone else’s arms and know that his life isn’t going to follow the typical path of a fully healthy and whole newborn. This little child is going to blaze such awesome paths, I have no doubt of that. But no mama wants to look at their child and fear that they’re going to miss those signs that something is going wrong and they catch them too late to prevent more damage from being done. No mama wants to stand by their baby’s crib and check and double check that their oxygen tank is still functioning and wondering when his next surgery is going to be. No mama wants to watch an incision heal that takes up a third of her baby’s back knowing that that will not be his last incision.

Little Bear and I will share scars that mark his entrance into this world. If I could, I would take all of his scars (present and future ones), but I can’t. I look at my tiny baby and know that his future is going to include pain for him, and struggles, but I also know without a doubt that my child is one hell of a fighter. The moment I should be worried is when HE gives up. Little Bear made his appearance exactly 4 months to the day after we got the diagnosis of myelomeningocele. Those four months were some of the longest and fastest I have ever experienced. Those months were full of major emotional ups and downs as I considered what was coming the moment he would arrive. I thought I’d get a little bit more time, but maybe it was a good thing he decided to arrive so early? I didn’t have a chance to really get wrapped up in what his birth day would mean. However, now that he’s here, the emotions and thoughts I had before he was born have now increased ten fold. The need to fight for my child and be his advocate are so strong it overwhelms me at times. I am learning to get on the phone (something that’s always been a struggle for me) and call those doctors to find out what I need to do when something goes wrong or sideways. I am learning to trust my already sensitive “gut” even more and learning the great significance of following through with my mama bear instincts especially when it comes to Little Bear. I have to come out roaring to fight for my baby. I’m grateful I haven’t encountered too many medical professionals YET who have gotten in my way. But my claws are out, my baby may be a fighter, but he’s got a mama who’s willing to put herself in harms way to make sure he stays safe.

So many people keep telling me how amazed they are with how well I’m doing with everything. But can I tell you a secret? I’m not doing well. I feel like I could be shattered at any moment. I’m very good at pushing through the hell to get to the calm. I know the crazy of his first few months are going to pass. I know that he’s not going to be on oxygen forever. I know he’s going to be big enough I won’t feel worried about having to protect his little body so much in his car seat. I know, I know, I know, I know we will find a rhythm and we’ll fall into it and adjust. But for now? The moments of feeling insanely overwhelmed keep catching me off guard. The moments of sudden tears over how difficult this is on my heart keep creeping in. Most of the day, most of the night, I am okay. I am managing to keep track of everything. But I don’t always feel like I’m living in a real reality right now. Of all things, I can understand now why moms of two plus kids forget to wash their hair. I realized yesterday that I actually couldn’t remember when I had last washed my hair. Taken a shower, sure, I do that every morning without fail. That’s part of self-care I will not give up. Some days are easier than others, some have a lot more dark moments, and some go by so fast I blink and it’s already 11pm again and I’m not really sure what happened during the day.

And that’s where I’m honestly at for the time being. It is hard. I don’t want to remind myself that this is hard, instead I want to consider all of this simply a challenge to overcome. But it is hard. It is hard on my heart and soul merely knowing what his future could hold. I am trying hard to focus on the present and just get through one day at a time, but that future is always there lurking. It’s always glaring over my shoulder as I look down at my baby. I worry for his heart and soul. How is he going to handle things? How will his heart hold up when he realizes he can’t do something Little Monkey can do with ease? Will I be able to calm his fear as he goes into surgery and knows that that’s what is happening? I know, don’t borrow trouble from tomorrow. But these are the things that are constantly stalking around the back of my mind.

For the next month, my goal is to make sure I am taking time to take care of myself. I know it’s going to be very easy to forget to give myself a breather. And I think simply acknowledging the difficulty of all of this helps too. I’m not hiding and that’s what I promised this blog when I first started it. I wouldn’t hide the difficulties, the hardships, of what this journey was going to bring. I want other moms in my shoes to know that it’s okay to cry. It’s okay to have a meltdown (and in saying so, I’m giving myself permission to lose it and not hold it all in). It was one of my worst nightmares finding out about Little Bear’s diagnosis. My pregnancy with him turned into something mamas fear happening. We’ll make it through all of this with flying colors, but in the midst? It is hellish at times, it is hard, and mamas, if this is your story too, know that it’s okay to admit this? We can make it and we will make it. We are the mama bears fighting for our children.

Bringing Little Bear Home

“Expect him to be here for 6 weeks,” they told me when he was first born. It was 6 weeks till his original due date, exactly 4 weeks till his scheduled c-section date. Knowing my Little Bear as I do, I expected maybe 4 weeks in the NICU instead of the full 6 weeks.

However, I walked in one day a week and a half after his birth and his nurses told me that they wanted to switch him to something called ad lib feeding. This meant that instead of having him on a strict feeding schedule, they would let him wake up on his own. He would have a minimum of how much milk he had to take, but he could eat as much as he wanted. I told one of my favorite nurses that when she stopped by to say hi. Her response suddenly brought the reality of getting to bring him a lot closer. She was happy yet upset that they were switching him to ad lib feedings. She said that this meant that we probably wouldn’t be there when she came back to work next week! In other words, if he could gain weight and wake himself up to eat at reasonable intervals, then that was a HUGE step towards going home. I already know that otherwise, they were pretty happy with his progress, especially considering he was only a week and a half old.

Two days later, they told me that he was starting to lose weight. This merely meant that they could up the amount of caloric supplement they were putting in his bottles and see if that would make a difference. As that potential discharge day drew closer, I scrambled around at home when I was there, trying to make sure we had everything ready. Little Bear had started developing and had developed an awful diaper rash. Because of the nerve damage, he (I guess, thankfully…for my nerves’ sake) couldn’t feel the rash very much. But, it was getting to the point of broken and badly chapped skin. I wanted to make sure we had a game plan for things to use at home to help protect his butt. The next day (now, February 9th) I was told he had gained back not only everything he had lost but had doubled that! My little chubby bear was suddenly putting on weight and sucking down bottles like there was no tomorrow.

I began checking items off the discharge list. I learned how to cath Little Bear, I took over diaper changes when I was at the NICU, I took over feeding and general care whenever I was with him in person. The next day, Phil’s birthday, we were told that Little Bear had passed his car seat test with flying colors. My Little Bear was flying towards discharge and he wasn’t even two weeks old yet. And they had warned me to expect him to be in the NICU for 6 weeks.

I’m going to dive into the whole emotional side of things in another post, but for now, it was hard preparing for him to come home. Now that I knew he would be coming home, I wanted him home so badly. The exhaustion of driving 30 minutes each way every day to see him was starting to push me down. I wasn’t going to be able to handle making that drive for much longer. Even though I wanted him home, fear of being sent home without a shunt, him being on oxygen still, and just general teeny tiny baby fears started popping up to hover just behind me. The nurses have to tell you what to look forward if your baby starts not being able to breathe. They have to tell you what to look for when your baby’s head suddenly can’t handle the amount of fluid building up. Here’s my champion of a baby, getting ready to head home, but still with so many things I’ll have to watch for, so many things that could go wrong.

Oh, and then add in normal baby things. I’m grateful Little Bear is my second child. AND he is a lot like his older brother was as a baby. Which helps a lot with not freaking out about things that would have concerned me as a first time mom. But still. I felt at times like I was bringing home a ticking time bomb.

Little Bear was discharged with Neurology’s blessing on February 13th, 2017. He was 13 days old, weighing in at 5lbs 5oz and while he was still on oxygen, I knew that he would be okay if he was off oxygen for a little while. Thanks to a test his nurse and I had done the day before, I now knew exactly when he really needed the oxygen and that he did well all other times. That drive home was a little rough. My teeny tiny infant looked like a miniature baby doll in his huge car seat. I sat in the back seat and worried the entire time at every jostle of his head. I wondered if we had everything ready at home and then laughed because I knew whether we did or not, we would know for sure by that evening. We pulled in to home, Little Monkey being at a friend’s house, and walked in the door, the first time Little Bear was home and not in my belly. I sensed an immediate relaxing from Little Bear as I pulled him out of his car seat. He seemed at ease in a way he hadn’t been at the NICU. It would definitely take a few days before things would settle into a sort of new normal routine. But he was home, and in a few short hours, my little family of four was home, in the same place and all together.

The Arrival of Little Bear – Part 2

(Click Here for the first part of Little Bear’s arrival)

One of the things that consistently made me tear up prior to Little Bear’s arrival was the fact that I wouldn’t get to hold him for who knew how long after he was born. I felt anticipatory that that would be the hardest part of the whole journey. However, when finally faced with my baby being delivered and immediately taken away, all I felt was relief. He was finally in the hands of those who could practically help and protect him. There was no more second guessing. No more wondering and worrying over the what if’s.

I was pushed through the halls to the other side of the hospital floor to the NICU. I still felt a little dizzy/loopy from my surgery, but I was aware enough to notice the people watching as I was wheeled to meet my son for the first time. We rolled into his room, and immediately the neonatologist introduced herself and started explaining what what going on. His room was a bustling hive of activity. I saw his dark hair first, and turned to Phil, saying “he had dark hair!” Even though this being had spent the past 7 1/2 months inside of me, and I had felt his presence so strongly from the moment I knew I was pregnant, I still felt like I was meeting a stranger. You carry a child inside of you, and you day dream about what they’ll look like. And then they’re born, they are earth side, and those little eyes, nose, mouth, hands, feet, all of a sudden they’re real. You can physically touch this little being and there’s a sense of having to reconnect a disconnected line. I watched, I observed and tried not to cry at the breathing tube down his throat. That was harder than not getting to hold him. They wheeled me as close to him as they could get. I was able to grab and touch his teeny tiny hand. He was perfect. He looked like a normal baby, but it was oh so hard to see his face hidden by a huge breathing tube and tape.

I had heard his cry the second he was born, but I wanted to hear him cry again. I wanted to hear him fight. I wanted to hear the strength I knew my Little Bear possessed. I was pushed back to my room a little while later as the nurses were getting him prepped for surgery. He would be going into surgery as soon as an OR was open. I felt a tension released within me. I knew my baby was in the best hands possible so I could focus on resting and healing. For the next three hours, I had a merry-go-round of specialists coming through my room to give me updates on Little Bear. If the specialist themselves couldn’t come, it was one of the nurses popping in to tell me an update. I was feeling more and more awake as the day progressed. It was one of those days that felt like it had been going on for a week. Especially considering I had woken up at midnight.

At 2pm that afternoon, I finally had just about full feeling back in my lower body and I was tired of just lying there. So I asked my nurse to help me get up. I wanted to pee on my own and I wanted to get my body settling into its new normal. So my catheter was removed, I slowly crawled out of bed, and stood up on my own. It felt good. I felt in control of myself, and I was ready to get this healing process started. An hour later, we got word that Little Bear was out of surgery. In fact the neurosurgeon himself came to give us an update. It was nothing but good news, in fact even better than I was expecting. He told us that he had been able to get an extra layer of skin over the incision which was something they usually couldn’t get on a baby as small as Little Bear. He said that Little Bear had remained completely stable during the entire surgery and was currently doing very well back in the NICU.

That was another huge thing I was able to release and breathe better about. My surgery was done. Little Bear had come yelling into the world. His surgery was done. And now it was a wait and see what he would do. How was he going to heal?

I asked my nurse to wheel me back over to the NICU to see him. He was tucked up in his bed on his stomach. I got to see the incision and it looked good. I had seen the cyst before his surgery and even though it had looked like someone had plopped half a tiny plum on his lower back, it hadn’t been disturbing. Now that the cyst was gone, his back looked even more normal. As he was still coming out of the sedatives, he didn’t react when I started talking to him and touching the parts of him I could that weren’t covered with wires. I still felt almost standoffish. This baby wasn’t my Little Bear, at least not yet. He hadn’t “woken” up yet. This was the holding period. I couldn’t see my baby entirely. His face was obscured with the breathing tube. The dark hairy fuzz that covered his back and his head was throwing me off too. This isn’t really something I wanted to admit. I knew he was my baby, but the connection I had had with him while he was in utero had shifted and hadn’t fallen back into place yet. My baby was so tiny. He was perfectly formed, but also so small and miniature lying there in his bed. My preemie didn’t look like a preemie with his ruddy skin and perfectly proportioned body.

Phil left a little bit later to go get Little Monkey and take him home. I was left at the hospital, there to spend the next four nights admitted with strict instructions to heal. Things started hitting an hour later. I felt the flood starting; the panic from that morning finally catching up, the exhaustion of having to hold it together long enough for my son to be delivered safely into the world, and an overwhelming sense of relief I wasn’t quite ready to acknowledge. I was trying to keep the tears from overwhelming me especially since no one was there with me. Just as I was trying to climb back into bed, my night nurse came in to introduce herself. This woman was amazing. She saw right away I was crying and asked if she could give me a hug. I lost it then and could only nod. She hugged me tightly, promising nothing but hugs if I needed them. She knew what had gone down that morning from my chart, but also acknowledged that I was fully in the right to break down! Darcey became my favorite nurse during my stay. I somehow had her for three of the four nights I was admitted at the hospital. Once I could breathe a little easier, she went through vitals with me, and of course the dreaded belly “massage.” I couldn’t sleep that night, my body, my mind, my heart were all too full and overwhelmed that night. I finally called Darcey in and asked her to take me down to the NICU at 3am in the morning. I just needed to know Little Bear was okay, so she happily obliged and wheeled me over to his room in a wheelchair. His night nurse gave me a full update and said that he seemed to be resting comfortably.

As soon as I had eaten breakfast and taken my meds, I asked to be wheeled back over to the NICU. I had been told right as I finished breakfast that Little Bear had been taken off the ventilator and his breathing tube had been removed! I was so anxious to go see him, I wanted to be able to actually see his face. I needed to find my baby, I need to see who he was. I had started pumping the night before, as I wanted to get a jump start with getting my milk to come in. Because of pumping I had already been able to get a few milliliters of colostrum. Little Bear’s nurses wanted me to do what they call “oral care” with the milk. That meant I dipped a swab into the milk and rubbed it around his mouth and tongue. He was starting to wake up more compared to the night before. One of the things the neonatologist told me as I showed up at his room was that babies this young often can’t figure out sucking/eating via mouth until they’re a little earlier. So imagine my happy surprise when Little Bear started reacting to the colostrum and trying to suck/lick the milk off the swab. He was getting antsy with being on his stomach and so we decided to try a pacifier. He took that small purple paci immediately and started sucking on it like there was no tomorrow. Tears pricked the corners of my eyes because in that morning I knew he had never stopped fighting. This little bear was going to prove everyone wrong.

I left to go take a nap in my room and rest. But I had plans to come back again to see my baby. Later that evening when I did go see him, they told me that he was getting angry about being on his tummy. And when they meant angry, he would start complaining and then pushing his butt up in the air, which would then push off his diaper and he would pee on anyone who tried to fix it. He certainly wasn’t going to make it easy for his nurses. His eyes were still pretty swollen from birth and from his surgery, but he had started trying to open them. It was beginning to feel like every time I left and then came back, he had changed. The changes were small, some more drastic, but I could see a difference every time I stood by his side. My Little Bear was waking up, and it was a glorious thing to watch. I could see his personality, the personality I had connected with while he resided inside of me, starting to show forth. This baby was a fighter and he wasn’t going to quit.

By the time the required 48 hours had passed after his surgery, they flipped him over on to his back and they removed the line that was in his belly button. That meant that more than half the wires and ports surrounding him in bed were now gone. “Do you want to hold him?” the nurses suddenly asked me. The moment I had been waiting for was finally here. I had found it surprisingly easy to be okay with not having held him up to this point. My tiny infant, the one with all of the wires coming off of him, a big iv in his right hand, this tiny infant was being placed in my lap. He felt like holding a feather who tried to grip my thumb. “You can try to breastfeed too!” Hesitantly I tried to see if he was interested, and he latched on right away. Little Bear was too tired to do much sucking, but he knew what to do and I was hopeful we would get this part of being mama and baby figured out.

The next day, they started him on donor milk as my milk was still coming in. The nurses kept me updated with precision any time I was in his room. They told me happily that he had kept down his first full feed with no issues at all! By the next day, they had tripled the amount of food he was getting. And still, he did well. I got to give him a sponge bath that day. That was also the day I walked in and did a double take when I realized that his hand was finally free of the IV! Most babies’ IVs don’t last more than a day, sometimes only an hour. His lasted three days and with him doing so well, keeping his feeds down, they decided to up the amount of milk he was getting even more. This meant that his IV wouldn’t come back. With each day that passed, I watched and more and more wires and tubes have been removed.

I will continue part three when I get a chance next!

 

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.

 

 

1 1/2 Months Left

The reality of us becoming a four person family is starting to feel so much more real as I now have a tentative date for our little bear’s arrival. We’re only waiting on the neurosurgeon who wants to be the one to do his back closure surgery. But for now, the date of his arrival is February 27th. And that date is 45 days away. Roughly 6 1/2 weeks. And I know that time is going to FLY by.

I have another growth scan this past Tuesday, as well as a delivery planning meeting, and a tour of the recovery suites as well as the NICU. Even though I feel the shadow of what’s coming quietly waiting and peering over my shoulder, I am grateful that it is obvious how much Children’s knows what they’re doing. It felt simple and straight forward. Of course when the day arrives and he is actually here, things could get rather crazy depending on how he is doing. But, beyond the things that we can’t control, the things we can are solid, comforting, and I feel safe putting myself into the specialists’ hands.

Little bear is continuing to hold steady. I’m just shy of 32 weeks, and while this is when a baby’s brain starts major development, his brain is holding is steady. The measurements of the fluid in his brain are the exact same as they were a month ago, and the doctors continue to be quite pleased with how he’s doing. It’s always a little nerve-wracking going in for the ultrasounds now. Just that worry of are they going to find anything else wrong? Will things have changed really drastically? Little bear is keeping up his previous habits of constant movement, and that makes me breathe a little easier. Even though his movements are changing, thanks to seriously running out of room in there, he still moves the same amount. He is still constantly shifting, responding to our/my touch, voices, and noises around me. We got to see his feet in 3D on Tuesday. Oh my goodness, his little feet and little toes are so adorable and the pictures makes it seem like you can just reach out and stroke the sole of his foot.

While touring the NICU I felt like I had a better image in my mind of how staying there is going to look. The recovery suites where I’ll be admitted are on the same floor as the NICU, and I will easily have access between the two clinics. It is a little dizzying to realize that I’ll be admitted and will be staying at that hospital in just a few short weeks. Last night, with the full moon, and most of yesterday during the day, I was kept awake all night with painful contractions and serious pelvic pressure. Nothing was ever close enough or possibly I wasn’t awake enough to time or feel overly concerned. But. Still. There is one more full moon between now and the end of February, and I am going to make for darn sure that my hospital bag is packed and on standby by that next full moon!

It was also strangely reassuring to see how parents had really made those NICU rooms their own. Bringing in their own blankets, bags, comforts from home. I got permission to bring the humidifier/diffuser I recently acquired, and I’m looking forward to making our spaces at the hospital a little bit more cozy. We still don’t know how long little bear will be in the NICU. That’s something we simply won’t know until he’s here and we can see how he’s doing with eating and recovering from his surgery. We do know however that I will most likely be admitted for 5 days. So that’s one thing we can count on.

A lot of little details and things still need to be worked out, but seriously folks, things are coming together and it’s a little crazy that this all happening so soon! No after the holidays slump over here!

This next week is when I will be putting together the freezer meals, so I’ll make sure to document that and then share what I decided to do as far as recipes! I feel like I have a good mix of comfort food and “healthy” food. And all of them are gluten free too. I tried out one of the recipes (slightly modifying it from a crockpot recipe to oven) last night for dinner and it was a big hit!

The days are counting down and while it can feel like time is dragging every so often, it really is flying by. Little bear will be here before we know it and then the controlled chaos starts!

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