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.

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

CONTENT NOTE: Possibly graphic descriptions.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Okay…back to the story. 

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

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

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

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

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

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

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

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

 

 

What About When Things Don’t Go Well…

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

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

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

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

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

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

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