Update on Little Bear

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

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

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

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

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

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

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

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

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

Thank you for reading and until the next update!

Countdown to Six Months Old

My Little Bear,

You were snuggled up against me yesterday and it suddenly hit me that you are almost 6 months old. In less than a week, you are half a year old and I still remember the day we found out things were more complicated than we anticipated. The midwife’s tears, the incredible kindness of the maternal fetal specialist, the daunting day long trip to Children’s, lying cramped in the MRI machine while I felt you shift and kick.

It’s been three months since your last surgery, and your head is still holding steady. I feel like I can say that now and not fear a sudden emergency. We started physical therapy for you yesterday and I’m eager to see you improve and how you’re going to surprise us. Everyday seems to bring improvement with your motor skills and even this morning you were experimenting with loud squawks.

Every once in a while I’ll have a flashback to the night Little Bear was born. I start feeling that major anxiety rush as I realized there was no stopping his coming. My only clear, sharp memories from that night are standing at the doors waiting for a nurse to come down and let us in, and hoping I wasn’t gushing water everywhere, and then rolling into the NICU room to see my little baby for the first time. I wish that day was clearer but I also recognize that everything happened so fast that I wasn’t able to stay present. Little Bear being 6 months old means that I am also 6 months out from major abdominal surgery and the end of a difficult pregnancy. My body is finally feeling stronger and not as weak or in pain as much as it was those first few months of his life. With all of the times Little Bear has been in and out of the hospital, I have worked hard to make sure I am taking care of myself.

I clicked through several pictures of mamas during c-sections the other day and something hit me hard. I saw myself back on that surgical table, shaking uncontrollably as I tried to keep my eyes focused on the blue sheet in front of my face. My arms weren’t tied down, but I couldn’t help clenching my hands to try to keep from shaking. The anesthesiologist was awkward in my room when he came in to introduce himself before I went back to the OR, but during the surgery? He was friendly, clearly in his element, and carefully monitored me and made sure I was comfortable. He made cheerful conversation with Phil, and honestly, even though I was barely aware of what they were saying, it helped having something sort of normal going on around me.

The c-section didn’t take very long at all, and we did get a glimpse of Little Bear, but for the life of me, I cannot remember what he looked like. I remember feeling him being pulled out, hearing the nurses delightedly exclaim that that was such a good looking head, and then that was that. They whisked Little Bear away and the next time I saw him was in the NICU surrounded by yellow gowned nurses and doctors.

The neurosurgeon that Little Bear ended up with wasn’t supposed to be his neurosurgeon. But boy am I glad Dr. H is Little Bear’s surgeon! He’s amazing and has been nothing but supportive and personable with us as we’ve navigated these rough waters the past 6 months. Little Bear’s surgeon even personally sent me an email after the head ultrasound two weeks ago wanting to make sure everything went well.

We have felt nothing but support from [most of] the specialists at Children’s. Still had hiccups with certain departments, but I would be highly suspicious of the entire endeavor if we didn’t have issues with at least one doctor. It’s hard to believe we’re already 6 months into Little Bear’s earth side journey. It’s both been easier and harder than I anticipated. He is such a little spitfire and I’m watching his motor skills improve daily. We had his first physical therapy session yesterday and we have several specific areas to work on, but he is not as behind as I thought he was. He needs help getting his neck strengthened and his back muscles. With a heavier head, lack of sensation in the bottom half of his calves and outsides of his feet, it’s to be expected that he’s a bit behind with things like holding his head steady or even grabbing his toes.

It feels good being able to actually plan things out a few weeks instead of literally taking it a few days or even a day at a time. Here’s hoping the second half of this year goes well and Little Bear stays stable.

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.


Updates on Little Bear

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

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

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

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

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

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

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.




Enter the Beast – Postpartum Depression/Anxiety

I was dealing with a lot of un-diagnosed physical issues after Little Monkey was born so his first few months of life were a bit of blur. However, the one thing that remains crystal clear was hitting a point halfway between 6 weeks and 7 weeks postpartum and feeling like I had walked into a brick wall. A fog descended, I felt emotionally and mentally detached in a really disturbing way. Thankfully I was seeing a therapist weekly so I was able to get the help I needed. I do remember calling my therapist at one point and telling her that I was beginning to have a need to hurt myself just to feel something. She got me in for an appointment that very afternoon and we talked through everything running through my head. I think part of the reason for how bad things got was because Little Monkey’s birth was pretty traumatic for me, and I didn’t realize that until months afterwards. Because of a very clear onset of my postpartum depression after Little Monkey, I started preparing for ppd this time around 6 weeks pp (postpartum), and sure enough, I hit 7 weeks and enter the beast.

The past 8 months have been nothing but buckle down and fight forward with all of my might and then keep going when I have nothing left to fight with. I thought I would have an extra month between when finishing my lists to when Little Bear was going to arrive. I had planned to take those last four weeks to really take care of myself and make sure I had some energy and mental rest stored up. Even though that’s what I told myself, I knew even then that I wasn’t going to get a full last month. I just hadn’t expected to not get any of that time. As things are in a calm spot right now, the craziness of the past 8 months is catching up to me. Two weeks ago, Phil had a breakdown and I realized that we both have been barely holding it together. We’re holding each other up and giving each other safe spaces to process everything, but we’re both falling and I’ve known that unless we both got individual care and help, we weren’t going to make it much longer. The very next day I found a therapist’s name from our insurance company’s list and I called and set up a first appointment a few days later. Phil’s going to do the same. While our relationship is continuing to gain strength and is actually stronger than it was a year ago, everything with Little Bear is enough to wear anyone down. We both need individual care and that’s what we’re going to do.

I have learned, mainly a self-preservation technique, to shut my mind down and let my body relax and to let go any guilt that I’m not doing “enough” around the house. I know I am functioning the best that I can, and even if that means that I spend a few hours a day on the couch with Little Bear mindlessly binge watching a movie, then that’s okay. Letting my body relax is the only way that I am functioning still despite the lack of sleep at night. But even this small hold on functionality is slipping.

Four years ago today I walked into a therapist’s office for the first time ever in my 22 years of life. When asked why I was there, I simply responded, “I just need help.” I spent two years with that therapist and since moving halfway across the country two years ago, I have remained in contact with my now mentor/friend. Those two years taught me how to cope with my constant up and down depression, but the past 8 months since finding out something was wrong with my baby have brought up things that I know I can’t do on my own. The pain of having a child needing extra care is more than I think I can safely carry. That being said, I am going to be asking my new therapist tomorrow her advice about going on meds. I am not okay with not feeling okay and I need to be fully functioning if I’m going to be fighting with doctors to make sure Little Bear gets the best care possible.

I promised at the beginning of this blog that I would be honest, so here’s me being honest.

I. Am. Not. Okay.

And that is okay. I do not feel guilty for not feeling okay. I know the things that have occurred over the past 8 months since that October day when I was told “something is wrong with your baby” have been more than any person can bear and still be mentally intact. I know postpartum depression is a bitch of a beast and it’s taken out some amazing people. I have watched other moms around me struggle with PPD and some of them have almost lost the fight. I have watched this culture become more aware of the battle torn fields of PPD and PPA (postpartum anxiety). I, myself, broke chains surrounding my own depression a few years ago and started speaking up about it; trying to bring it in to the open and make it a more normal topic of conversation.

I have never taken meds for my depression, but this time I am willing to take that step. I am afraid of being “out of control” of my mind, but here’s the thing; I already am out of control. I know most of what I’m feeling (or not feeling) is because of chemical imbalances and hormones still out of whack.

If you’re struggling with depression, specifically postpartum depression, please get yourself help? Heck, if you just can’t pick up the phone and make a phone call, ask your partner to do it for you, or a friend. Simply having someone to talk to is a safe place to start when managing your postpartum depression/anxiety. The next step is determining whether you need meds or not. And please know there is no shame or guilt in that! We live in a culture where the needing of medicine to function is not looked kindly upon. But I think that mindset is slowly changing as more and more people are talking about how things like anxiety medicines are helping them feel more like themselves and like they can function.

So here’s to facing the beast and killing the beast. I am struggling to stay afloat and not completely shut down. I am pulling out my weapons and preparing to fight tooth and nail if I have to. My boys need me, I need me, and I am going to get the help I need.

Can we trust the doctors?

Being a mother, a parent, means that it is my responsibility to advocate to the best of my ability for my children until they decide they no longer need me. Being the mother of a special needs child, having specialist appointments, means I have to educate myself and understand why he may need or not. This also means that when I have some serious concerns about how someone is treating me or my child, I need to speak out and trust my gut.

This past week was the stuff of nightmares. Little Bear’s pediatrician requested that I take Little Bear to the pulmonary clinic for them to run some tests with his oxygen levels. The goal was to see if he could get off the oxygen, if not, then try to figure out a more long term plan. We went to see the pulmonologist a week ago Thursday. I wasn’t terribly thrilled with the way the doctor was treating us and he seemed inexperienced with babies as small as Little Bear. We met a second pulmonologist who we would see at the campus for Children’s that was closer to us. I liked the second guy, again, wasn’t thrilled with the first. The first doctor decided he wanted to order a sleep study for Little Bear. While I had my doubts about that, I went with it, especially since he said it would most likely be a month or two before the study would happen. So much for that time frame though, the sleep study clinic called me a day later and had a sleep study set up for Little Bear the following Monday night.

I later was told that the main purpose for the sleep study had been to see if Little Bear had any central sleep apnea or if he could remain stable off the oxygen. Who would have thought such a simple reason would snowball into a massive deal.

Monday arrived and I began to feel a bit uneasy about the sleep study as the evening arrived. I tried to pull together things I would be comfortable with staying overnight in the hospital. I brought along things that would hopefully make Little Bear more comfortable as well. We got to our room and I immediately started feeling uncomfortable. That feeling of discomfort merely increased as I started watching the nurse wire Little Bear up. The more leads she put on, the more I knew the night was not going to go well. I felt a twinge of hope when Little Bear started falling asleep, but as soon as the lights went out and the study officially started, that hope flew away.

Long story short (as I don’t want to relive that nightmare of a night), it was hellish. Little Bear cried, squirmed, and fussed all night long. I could barely feed him due to how much stuff was covering his head and face. I didn’t sleep. Little Bear didn’t sleep. And by the time we got home the next morning at 7am, I wanted to just break down and cry. I didn’t realize how much being back in the hospital overnight would trigger me. Memories and fears that I had felt when Little Bear was in the NICU had come flooding back while I listened to my baby cry with such discomfort and I couldn’t comfort him. My hands and arms kept falling asleep because of standing next to his crib trying to keep his pacifier in so he would maybe be able to to fall asleep.

I knew the nurse wasn’t pleased with what she was seeing on the monitors, but I also knew she wasn’t going to tell me any specifics. She seemed in a hurry to get us out the door the next morning, and when the pulmonologist called me the next morning, I knew why. He asked how I thought the night had gone and after barely acknowledging my answer, launched into telling just how worrisome the results were. He said that Little Bear had a massive number of obstructed breathing incidents, to the point that he was immediately referring us to ear, nose, and throat. He upped the oxygen volume, and started talking about how it wasn’t like we needed to stay up all night to watch Little Bear’s breathing, but he was pretty concerned. I started crying, me, the sleep deprived, triggered mom, hearing yet again something was seriously wrong with her little boy. Only this time, my gut was screaming at me that something wasn’t right about these results. The pulmonologist started back pedaling as I started crying on the phone. He seemed to take back some of his concern, but when I asked how much the extreme abnormality of the night for Little Bear played in to the results, he said he didn’t know. He admitted he didn’t know how Little Bear’s prematurity influenced the results as he didn’t have experience with preemies.

I held my baby, cried, and felt extremely uneasy about the whole sleep study. I watched my baby sleep like a dream that day and night. Once again, Little Bear was showing me that things weren’t as dreary as doctors were telling me they were. The next day, I called back to the pulmonary clinic and asked to speak to the other pulmonologist we had seen the week before. That doctor’s assistant called back I was able to explain my concerns and have some of them validated. The assistant assured me that the ear, nose, and throat specialist would be able to answer most if not all of my questions and she hoped that things would get straightened out when we saw that specialist.

I waited two more days till the appointment with ENT and those days were filled with more uncertainty and uneasiness and hope that the ENT doctor would hear me and my concerns. I got some weird vibes from the nurse who checked us in at the ENT appointment. I mentioned I had some concerns about the sleep study and her reply was a rather brusque “we’ll get to that in a little bit.” I later learned her response was mirroring the doctor’s own frustration with the sleep study results.

The specialist came in and I immediately felt at ease. When I trust my gut about people, it’s almost always right. I felt that this doctor was one of the ones I could trust. She started explaining why she didn’t agree with the sleep study results and how she wanted to try to reverse the snowball effect from the sleep study. She told me that she would be having a conversation with the original pulmonologist as well as the head of the sleep clinic. She was mighty peeved that my comments about the abnormality of Little Bear’s night weren’t even included in the sleep study results. Just then, Little Bear started his usual hiccuping and she asked if he did that often. She watched him for a few minutes and then said that she wanted to give him a prescription for reflux. She was going to do a scope down his nose to see if there was any obstruction but felt like the nasally congestion he’s had since a few days after birth was directly related to and caused by reflux. Even though he does not spit up, he still has a lot of “wet” burps, and hiccups a lot, as well as sometimes acts uncomfortable after eating.

After doing a scope down his nasal cavity and to his voice box, she explained what she had seen. Even with his crying while she did the scope, she didn’t see any obstruction that would suggest obstructive sleep apnea. She couldn’t say 100% for sure that he doesn’t have sleep apnea. But she said that her goal was to start weaning him off oxygen and thought that can happen sooner rather than later. She also told me that I was to come back to her if I ever needed help getting a mess straightened out again.

I walked out of that appointment feeling validated and not feeling as mental as I had the days leading up to Friday’s appointment. I hate to be the mom who’s making the doctors’ lives difficult by always questioning, but golly, those sleep study results and the study itself just did not sit well with me. I would mark that night as being one of top ten worst nights I’ve ever experienced. I am learning when to shut up and let doctors do their thing and when to seriously question why. I am learning more about my child and his specialties and I am learning to trust my instincts.

So really, it begs the question – can we trust the doctors? I refuse to go back to the original pulmonologist simply because of his current lack of knowledge about my child’s specialties and unwillingness to acknowledge that my concerns are legitimate. I know I’m going to have to deal with other doctors and the same issue of them simply not knowing or possibly believing themselves above my knowledge of my own child. I want doctors who are willing to come alongside Little Bear and I and work with us, instead of above us. I am the “expert” on my child, and if a doctor does not hear me when I voice concerns or questions, then we’re moving on. It’s a fine line to walk; is the decision to question the doctor the best for Little Bear? Doctors are not gods, they are specialists in their fields, but I think it comes down to me to decide when something doesn’t make sense or isn’t something I’m comfortable putting my child through. That fine line includes a fear of making the wrong choice for my child, and yet at the same time trusting my gut and what my child is showing me.

Despite the incredibly rough week emotionally and mentally last week, I feel a lot more relaxed about how things are moving forward from here. After the sleep study and seeing how many wires covered my baby, I’m completely fine having to deal with just the oxygen. As much as I would like that gone, it can stay as long as he needs it and I won’t complain. My Little Bear is telling me he’s okay, so I’m going to trust my baby and rest in that.

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.

Postpartum Essentials

My Little Bear will be a month old tomorrow and that’s a little crazy to me! It feels like his first month of life earth-side has alternately flown by and taken forever. While I’m now a month into postpartum healing and adjusting, I figured it is time to write about the things that I have found increasingly helpful during this first month.

Okay, first off, let’s talk about c-section recovery and the things that helped me the most with that. I’m grateful that Children’s gave me something call an “ON-Q” pump which administered pain/numbing agents directly into my incision for the first 48 hours. That little pump that clipped to whatever I was wearing was the most amazing little device ever. I even had a little difficulty letting my nurse take the pump out even though it was empty at the end of those first 48 hours! I am convinced because of that little pump, my first 48 hours were not as bad as I thought they’d be pain wise. Beyond the pain pump, my next course of action to maintain comfort was clothing. I hadn’t been really sure what to pack clothing wise so I picked things that I usually found comfortable and didn’t place much if any pressure on my lower abdomen.

I did pack two pairs of yoga pants, but those were a little difficult to wear the first few days as they kept falling and sitting right where the pressure was uncomfortable. I brought two of these night gowns (I have slowly collected about 6 pairs from Target over the past 3 years).

Nursing Chemise

(Just a note: the nightgowns I have aren’t nursing, but they’re identical to these in length and top design…I’d highly recommend the nursing ones or even the longer ones Target now has in stock. The ones I own have been all I need at night and I haven’t need a night time nursing bra)

I had done some research prior to packing my hospital bag about postpartum clothes/pants and discovered three different pairs of leggings. Two are specifically designed for postpartum wear and the third pair is merely highwaisted. The first pair I got is from Blanqi. These leggings are marketed as highwaisted + nursing leggings. The reason for “nursing” is the idea that you can lift your shirt up to nurse and still be covered and have your belly supported. I got these leggings during their 50% off sale around Black Friday. When they arrived, I was unsure if they were actually going to fit me, but was pleasantly surprised that even while still pregnant, I could comfortably pull them on. They were a little snug around my pregnant belly, but I felt comfortable hanging on to them for postpartum wear.

Blanqi Highwaist Postpartum + Nursing Support leggings

Now that I am not pregnant, am now nursing and am dealing with postpartum recovery, I have a slightly different opinion about these leggings. They still fit comfortably, however, they are really long. Being only 5′ 1″ myself, I found the excess material bunching up around my thighs or knees to be a bit annoying. I am also quite short waisted, so pulling these leggings up as high as they’re supposed to go means they go all the way past the very bottom of my rib cage. I would definitely recommend them for someone a lot taller!

The second pair of leggings I have are from Navel.

The Navel Pant

I actually wore these while still pregnant and absolutely loved them. The material they’re made from is thick but not too thick. They’re warm in colder weather, but I haven’t felt overheated in them yet. Granted, I have yet to experience Spring/Summer temps yet, so I can’t give a good opinion on that quite yet. These leggings do come with an additional insert that adds extra support beyond the top of the leggings themselves. These were in my hospital bag and I found them to be extremely uncomfortable during those first 4 days postpartum. They were a little too “snug” around my belly, and I found I still needed loose clothing for a little while longer. However, once I got home, and got a little more active, especially with driving back and forth to the NICU every day during that second week postpartum, I found these leggings to be exactly what I needed. There is still a tiny issue of them being made for someone slightly taller than myself, but I don’t even notice the extra material anymore and I wear these leggings several times a week.

Okay the third pair was a random guess at a special deal the company was having for pre-ordering their leggings. I’m talking about the Girlfriend Collective leggings. They are no longer available until the whole line releases in a few more months. But, I will say these were and still are my total go-to leggings. They’re just as well made as the Navel pants and I’m excited about having good quality leggings that will last me for along time!

As far as tops and such, I had gotten several nursing camisoles and wore those non-stop during the first two weeks once I had been released from the hospital. While I was still in the hospital, I used this night time nursing bra the entire time because it was the most comfortable around my shrinking yet very sore rib cage.

Mirity Womens Seamless nursing bra

This bra is extremely soft and comfortable! I wore this with my nightgowns and a few tunic tops I had brought with me to the hospital. I have only worn it a few times since getting home, but it’s hanging out in the back of my drawer when I need some plain old comfort.

Okay, let’s talk about underwear for a minute. I had heard from several people that highwaisted underwear was 100% the way to go with underwear choices after a c-section. I hemmed and hawed about getting highwaisted underwear and finally decided on these instead. I tried a few pairs of highwaisted underwear and oh my, NOT for me.

Intimate Portal Women Under the Bump Maternity Panties Pregnancy Underwear

I got these several months ago and found them so comfortable especially while pregnant. I brought a few pairs to the hospital to wear once the bleeding had slowed (and I wasn’t wearing the mesh panties), and I am so glad I did. These hit perfectly just below my incision and not once rubbed against it or caught on the steri-strips or scabs. In fact, I loved these so much, I ordered a second set once I got home! (Sooo, I now have 10 pairs – I got both sets of 5 pairs) I highly highly highly recommend them for c-section recovery. Especially for those who can’t stand highwaisted underwear (like me).

Alright, so, moving on. I had an idea of what I would like or what worked for me when dealing with night time feedings with Little Monkey, so I was able to plan accordingly for Little Bear. I had relied on my cell phone flashlight for those middle of the night feedings. While that had worked with Little Monkey, I remember feeling frustrated and blinded by the flashlight several times. I did some research and found this light on Amazon and am so so glad I kept it on my registry!

Tumbler LED night light

However, I just discovered this light is now unavailable! If it does ever come back in stock, definitely grab it. It has been so incredibly helpful getting up with Little Bear in the middle of the night. It gives off just enough light to comfortably see but not enough to feel blinded and it’s a very soft yellow light.

Those are my recommendations for postpartum necessities! I’ll create an additional post later if I think of other things. Right now, Little Bear is crying for his food and I have Little Monkey anxiously telling me that Little Bear is crying.