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.

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.