I once would have defined heartbreak as when someone you love, a boyfriend, spouse or significant other, breaks your heart. Maybe you were cheated, ghosted, shocked out of the blue or came to discover the person you loved wasn’t who they said they are. That was my definition of heartbreak.
It wasn’t until December 15, 2017 that the definition completely gained a new meaning for me. To recap- at the 20 weeks anatomy scan of our baby girl, Emberly, we found out a then devastating diagnosis of Spina Bifida. I can’t speak for my husband, but I believe my feelings regarding Spina Bifida would have changed drastically if the bedside manner of the sonographer and nurse on-call was a little more hopeful or optimistic. But it wasn’t, and we left the office that snowy Friday evening devastated, broken hearted and filled with complete sadness.
As the first year anniversary of Emberly’s diagnosis approached, I was drowning in anxiety. My husband was out of town for a month on a work related schooling and I was home, alone, with my two young children. I was swamped with appointments for Emberly and asking favors from family and friends to help watch Lincoln so I could tend to her PT and medical appointment needs. And the whole time, Emberly’s “anniversary” was quickly approaching and I had no one to really talk to about it.
It does seem odd. Before having ever been in this situation, I would have never thought a day of diagnosis could be so life-altering or traumatizing. But that is truly what it was in one word – traumatic. It traumatized me in so many ways. I will never be able to step foot inside the doctor’s office in which I first had a miscarriage, followed by a healthy pregnancy with Lincoln and then a painful diagnosis with Emberly. That changed the mood over that office from hopeful and elated to tragic and angry. I feel a sting of resentment to friends who have medically “normal” babies. Not because I would change a single thing about Emberly, but because I have such a small group of people who understand the challenges that Emberly does and will continue to face physically and medically. I find myself feeling frustrated when someone is thrilled to find out if their baby is a boy or girl at their gender scan, just how I was, now knowing that happy moment could be ripped from your hands in a second leaving you to care less about the gender.
Through all of this, I found my heart completely broken. It was broken for that baby I “should have had.” It was broken for the family I thought I wanted. It was broken for my baby and broken for Lincoln because I knew tons of medical interventions were in my future which meant less mommy time for him. It was broken for my husband because I already know the weight he carries for our family. I was completely broken. I felt less of a woman, less of a mother and just less of.
But that was then. Here I am, here WE are, one year later. And how wrong was I? So, so very wrong about so many things. The family I had wanted before IS the family I have now. The mother I am now is better than the one I wanted to be. The brother I wanted Lincoln to become then surpasses my expectations now. The stress I thought I would add to Darius hasn’t slighted him or thrown him off his game in the least bit. The baby I should have had then is exactly what I have now. She’s phenomenal, she’s perfect, she’s the most beautiful, kind soul I have ever laid eyes on.
So, as I head into the second year of her Spina Bifida diagnosis, I hope I can begin to relive December 15th as a day in which I was changed and molded into a better woman, wife, mother and friend. Was it a devastating day? Absolutely. But it is a part of my story – a huge part – and one that I would never even begin to regret or change.
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I feel really bad. I was keeping everyone who wanted to be involved, up to date with my and Emberly’s situation. And then, I kind of fell off the Earth.
I did my best to keep people vaguely involved through social media and photos but I haven’t written a blog post since discussing her birth story. To be honest, I think I began to feel a lot of pressure. It makes sense – I suddenly had an influx of messages – whether to my phone, or email, or facebook/instagram messenger. And I do greatly appreciate these gestures; people looking out for us, curious, asking questions, etc, but it did begin to feel a tad overwhelming. Long distance family would want answers that I’d have to help explain through a game of telephone between my immediate family to them. People I hadn’t talked to in the longest time would reach out and offer their prayers, asking “tiny” questions but I knew what they really wanted. And when shit got real with Emberly (not like it hadn’t already been real) my main focus became one thing: survival.
After discussing Emberly’s birth story, life in the NICU left it’s “honeymoon phase” as my friend Hannah (a former NICU mom) referred to it as and the depression and anxiety set in. It quickly hit me how challenging and demanding this part of my life was going to be. And it wasn’t a normal situation whatsoever. I have a toddler at home who had no idea he had a baby sister in the hospital – and I’m sure if he even could comprehend that, he wouldn’t have given a crap anyway. Darius’s work schedule, although lenient, required him to use his *ten* paternity days while Emberly was in the NICU which left me feeling stranded when he went back to work. Darius’s mom – our saving grace – came to visit when Darius went back to work for three weeks. She was there to help ease the stress of having to take care of Lincoln, ensuring he didn’t feel neglect, all while visiting Emberly for hours each day and maintaining a household. I don’t know what we would have done without her. Lincoln would have ended up in daycare, I’m sure, which would have been money out of our pocket we just didn’t have. I can speak for Darius and myself when I say that our family and friends have been our life preservers through this process.
Having a child in the NICU is almost too challenging to explain. You really only “get it” if you’ve done it. It’s hard enough to leave the hospital without your baby after delivery. It’s even more difficult when the pregnancy was ripped from your fingers long before it was supposed to be over. Your body is adjusting; confused and uncertain. I specifically remember two days after delivering Emberly, feeling her kick inside me. Doesn’t make sense does it? It’s obviously impossible – she was here now – but my body wasn’t ready. But beyond the NICU challenges and your body adjusting, It’s even more of a difficult process because you have to ask yourself “what is my point?” I can’t hold my baby when I want. I can’t breastfeed my baby. I can’t have that bond with my baby like I normally would. I felt like as positive as I was trying to remain, my thoughts were filled with a bunch of “I cant’s”. So, what did I do? I pumped. Every three hours from the moment a hospital grade pump reached my hospital room, I pumped. If I couldn’t do what all the other “normal” moms were doing on my labor and delivery floor, then I was going to pump. I was going to make sure I provided my baby with the one thing that was ME; that no one could replace or replicate.
And hear me out; I am a strong advocate for fed is best. Lincoln used formula all through his first year. But with Emberly, I NEEDED to be able to provide her something that came from me. That I could show up with everyday at the hospital to provide for her. So, over the next 8 weeks, I pumped every three hours. Yes, that means in the middle of the night I pumped. During the day, I pumped. I had alarms set on my phone to remind me that it was time to pump. And over the course of 8 weeks, I produced so much milk that we had to buy a deep freezer because ours filled up. And when Emberly was transferred from the hospital at eight weeks to Kennedy Krieger, she was moved with 95 bottles of frozen milk. Emberly was on donor milk for only her first two days in the NICU while my milk came in. So, was in successful in that specific journey? I say yes and I proudly pat myself on the back. Anyone who has pumped knows how miserable it truly is.
I would visit Emberly every single day for 3-4 hours. During that time I would help with her “cares”, hold her, cuddle her, sing to her, rock her, take photos with her and pray for her. In the NICU, Emberly received “cares” every three hours. “Cares” cover these basics: feeding, body temperature, diaper change and weight of diaper, blood pressure, blood pressure cuff change of placement, outfit change if necessary, heart/lung check, stomach measurement and head measurement, weight of baby (at nights only). I enjoyed being a part of the cares. It was another part of Emberly’s daily routine that I felt like I could be apart of and start to bond with her. When I missed a cares, I found myself to be very upset and being late for cares made me very anxious. It was like the one part of my day that made me feel happy. Besides sitting and holding her, cares was our only big source of interaction. As time went on in the NICU, cares kind of became my job. The nurses become comfortable and even encourage parents to take control of cares and do as much as you are comfortable with.
Our nurses were great and being there as much as I was, you begin to find your favorites and get excited when you see them multiple days in a row. Often our nurses told us that Emberly was best dressed or that they would argue about who gets to hold her next when Darius and I weren’t there. It’s these little things that made the NICU bearable. Also, our doctors and nurses from my surgical team would stop by here and there and the times I happened to be there when they stopped by would almost bring me to tears. I feel such an incredible bond and family element with them, that seeing them unexpectedly always brought so much joy to my day.
And then there were the times in the NICU that I would sit in there and cry. Sometimes it was the mounting pressure of everything. I still often believe that I haven’t had time to process everything that’s happened since December when our world turned upside down. Sometimes I cried because no one would leave us alone. What I mean by that is the doctors and nurses and researchers and specialists coming in and out of our room constantly, although there to help, but made me feel incredibly irritated when I just wanted time alone in silence (minus the never ending beeping of the machines). Or, the constantttttttt stream of phone calls I did (and still) receive from doctors, specialists, insurance, billing, social workers, etc., regarding Emberly’s case. I just wanted them to STOP. It was always so tempting to hit ignore and send each phone call to voicemail but I knew I’d have to call back eventually and that just made things worse in my mind. Often, I would close the curtain and shut the door to Emberly’s NICU room, which was normally a sign that I was pumping, but sometimes instead I would sit in the rocking chair and hold her and sing her song quietly and gulp down my coffee while binging m&m’s.
So, overall, what did I learn? I learned that raising a child really does take a village and to never feel ashamed to ask for help. I learned that I am so, so much stronger than I thought I ever could be. I learned that being a parent of a preemie who has a long NICU stay is not for the faint of heart. It takes an enormous amount of dedication, time, love and patience. It requires your full, undivided attention and a ton of understanding.
A NICU parent will never forget the way their tiny baby felt in the palm of their hand or how their skin felt sticky and tacky because of all the humidity from the isolette. A NICU parent will always remember how their first look of their child was seeing them covered in tubing, wires, an NG tube and a CPAP machine. NICU parents will never forget the feeling of actually not wanting to go to the hospital to visit your baby, but feeling utter bliss once you’re there. NICU parents will never forget the little milestones – like weight gain, breathing on their own, their first bottle, their first bath or first time being held. I will never forget any single moment, sensation, emotion or feeling from our time, our story of our eight long weeks in the NICU.
Emberly Rose Cross – February 18, 2018 – 9:57am – 3 pounds – 14.5 inches long Emberly – meaning – full of fire
My premonitions about Emberly have been pretty darn accurate from the start. I always knew she was a girl. I always knew something just wasn’t right. And after finding out about something not being right and going through surgery, I knew she would come early. Little did I know exactly how early she would arrive.
It all started on Thursday, February 15th.
I had my weekly visit with my fetal therapy doctors. Everything was looking good and I was feeling totally fine. The previous week, my doctor had noticed two small pockets of fluid where my placenta and uterus connect. These spots of fluid were at the exact locations of the ports they inserted into my uterus during surgery. My doctor wasn’t happy to see them there but didn’t think they would cause any problems. She said anytime you mess with the uterus there is a chance of something going wrong. Because you cannot stitch the membranes (or bag of water) closed, cells multiply in the place where the tiny holes were to create a patch and keep it closed. It was likely that fluid had leaked out a bit, but as long as it didn’t start to drain out and leak out of me everything was fine. I left the appointment that day feeling optimistic and that full term was right around the corner. I was finally in the third trimester.
Two weeks prior, my other fetal therapy doctor had recommended a place where I could get a prenatal massage. Darius, being the incredibly brilliant man that he is, booked me for a massage as a Valentine’s Day gift later in the day after my appointment. The massage was fantastic and I was finally feeling relaxed; like I had really taken care of myself.
That evening Darius and I were hanging out together watching a movie and around 9pm I just didn’t feel good. I was getting cramps, back pain and leg pain. I basically felt like I was about to start my period. I blamed it on the massage, knowing that after I get massages I am usually sore. In the back of my head, a slight panic had set in.
Friday, February 16th
Around 4am the cramps woke me up. Real panic had now set in. This is exactly how my labor started with Lincoln. I was terrified to sit up in fear that my water would break. I shook Darius awake, telling him that I didn’t feel right and he told me to call labor and delivery on the fetal alert card I had been given in case of emergency. Knowing in my heart they’d tell me to come in, and knowing I had no clue what we’d do with Lincoln at this hour, I ignored Darius. I took two Tylenol and went back to sleep.
Now, at around 7am things hadn’t gotten any better. I was having trouble deciding if they were contractions or cramps, but my stomach was tightening up and I refused to time them because I was so terrified. At this point, Darius is anxious and frustrated, telling me I have to call but I knew my doctors office didn’t open until 8. I called labor and delivery and they told me to come in. By the time we dropped Lincoln off at my friend Jen’s house it was close to 8 so I called my regular doctor who told me to come to their office instead because they were obviously familiar with me and my case.
We arrived around 8:30 and I was hooked up to a monitor to track the baby’s heart rate and my contractions. Lo and behold, I was having contractions every 2-3 minutes. I received a shot of betamethasone which is a steroid shot used to help develop a preemies lungs in case delivery is necessary. My doctor informed me I would be staying overnight in the labor and delivery unit to get my contractions under control and stop my labor.
Fear set in. I didn’t want to stay. I wanted to go home and be with my sweet boy. This was not my plan. NONE of this had been part of my plan.
I was started on indomethacin which is used to help stop preterm labor. A few hours later, my contractions hadn’t stopped and they started me on magnesium. Magnesium is horrible and it makes you feel absolutely terrible, but it does it’s job. When they first started magnesium they pumped a lot into me quickly. My arm felt like it was on fire at the spot where the IV was, I was burning up, nauseous, uncomfortable and feeling sick. After about fifteen minutes of this, they were able to lower my magnesium and although I still felt horrible, I was feeling “better” than before. I stayed on magnesium through the night, trying to sleep here and there.
Saturday, February 17th
Being on magnesium this long had really started to mess with me. When I was on mag I was told it makes your muscles very weak so I had to use a bed pan to go to the bathroom which was such a degrading experience (my reason for telling you that will make sense later). I was starting to see double and when my nurse came in my room and when I told her there were two of her, she knew it was time to turn my mag down.
Later in the day, my doctor came in and told me he was happy with how the mag was working and that I would stay on it throughout the night again. I was so upset I wouldn’t be going home, but glad I would be going home the next day and that the mag was working. My doctor told me that being on the mag and indomethacin for this long wasn’t horrible for the baby but also wasn’t necessarily good. He wanted to wean me off the mag overnight, stop the indomethacin, and start me on a new drug Sunday morning that I could continue to take at home the rest of my pregnancy to keep the contractions at bay. Sounded good to me! In the back of my mind, I knew something wasn’t right. And I hated to say it out loud but part of me was ready for the pregnancy to be over. I was miserable, I felt horrible and my body was exhausted from all of the medications. And to be honest, I was so tired of living my every day in worry or fear or trying to take it easy all the time because we didn’t want preterm labor. Of course ALL that mattered to me was bringing home a healthy, full term baby, but you have to understand – at this point I was just so exhausted. I also feared being told I would be hospitalized for the rest of my pregnancy which was very likely an option. But at this time, things were looking good for me. My contractions were now 7-10 minutes apart and I couldn’t really feel them anymore. They weren’t nearly as intense.
Later in the evening, around 11pm, I called my nurse in to help me use the bathroom. When she took my pan away and when I wiped, we both looked at one another at the same time. There it was – blood. My heart rate spiked and I screeched “WHY AM I BLEEDING?” She called the doctor and began to calm me down. I remember the way she held my hand and rubbed my forehead telling me that it would be ok and that many women in high risk pregnancy cases bleed and have full term babies. The doctor did her pelvic exam, and cleaned where I was bleeding from saying that it looked like it had stopped. She called another doctor in to check and they both confirmed the bleeding had stopped. And for a while, it looked like it had.
Hours later, I used the bathroom again and the blood started to return becoming darker and darker. They did another pelvic check and this time it was excruciatingly painful. My doctors asked me to cough and when I did I could feel the blood gush out. Each movement, cough, wince, anything – I could feel the blood gushing out. It was an absolute nightmare. I was starting not to feel so good either and I knew there was no way I was going home that day. One of the doctors did a quick ultrasound on me and determined that my placenta was still attached and that internally, nothing really looked wrong. Although I was 50% effaced, my cervix was closed and I was not dilated at all. They called my doctor anyway who said to start the mag again and that we had to get my bleeding under control.
Sunday, February 18th
Around 7am my doctor came in and did another ultrasound. He was able to determine that I had a blood clot between my uterus and placenta and I was now having a placental abruption – where the placenta begins to detach from the uterus. Emberly was literally KICKING the exact location of the clot causing me to bleed even more heavily. I could see the worry and disappointment in his eyes and I knew what was going to happen. He said my case wasn’t necessarily an emergency but at this point I was losing a lot of blood and he didn’t like that. Emberly, on the other hand, was completely fine during all of this. Her heart rate and fetal movement always looked fantastic. My doctor didn’t want anything to HAVE to become an emergency delivery and said he was going to call my other doctor to make a final decision. About twenty minutes later he came in and said they had decided to deliver the baby today. In total shock, I began to laugh hysterically. All the doctors and ultrasound techs in the room looked at me like I was INSANE. My doctor said “no, I’m serious” and as I said “I know!” I began to now cry. I was just over 29 weeks. I had met with the NICU doctors before. I knew she was probably going to be very sick and very tiny. I also knew this was going to mean she’d be here for months before coming home…most likely around her due date is what they told me. I did ask if the delivery could be vaginal because that was the great thing about this surgery all along. My doctor said because they’d have to induce me, there was too great a chance of me losing a lot more blood and Emberly and I both going into distress. A c-section was the only option.
Darius got dressed into scrubs and I was wheeled to the OR. I received an epidural and the entire time I swore I was going to throw up all over the nurse holding me in place. I remember the OR was cold, I was panicked and I couldn’t stop shivering. They kept telling me to hold still and I wanted to scream “THIS IS MY FOURTH EPIDURAL – I KNOW WHAT I’M DOING!” but I just shut my mouth instead. After the epidural was in, they laid me down and strapped my arms into place. They started to administer other numbing mediations and narcotics through my IV line. In another IV, I was receiving a blood transfusion. Darius came in and held a tray next to my face in case I needed to throw up – which I did, twice. Do you know how hard throwing up is while lying on your back and having your insides being moved around at the same time? It’s so hard. At one point I felt like I was suffocating from the pressure of the c-section and the crashing of my hormones causing me to shake like crazy.
About a minute before 9:57am my doctor said “baby is almost here!” and my heart was pounding. At 9:57 my favorite nurse, Jasmine, yelled “BABY GIRL!” and the smile on my face could not be erased. Darius was by my ear saying “our baby girl is here! she’s here!” And knowing she was so early at 29 weeks, we didn’t expect hear a cry, but a minute later THERE IT WAS! My Emberly, my sweet ball of fire, my little fighter! She was 11 weeks early and already shouting out! I couldn’t have been happier. About 30 minutes later the NICU nurses wheeled her by me and I started to cry. She was SO tiny, weighing 3 pounds and 14.5 inches long. Although tiny, she was so beautiful and peaceful. They had her wrapped in this little plastic bag to help keep her warm and sterile as they took her to the NICU.
My doctors finished stitching me up and one of my amazing anesthesiologists let me watch Game of Thrones spoofs on her phone to keep my mind clear. I needed that distraction so much in that moment.
Five hours later, at 2:57pm, my sweet girl was finally ready to meet her mommy and I was wheeled down to her room. And lucky us, she is in room 3 which happens to be me and Darius’ lucky number. Although I couldn’t hold her that day, being able to touch her, see her, feel her and witness the glory that she is was the best thing ever. Seeing the love beaming from Darius’ proud eyes filled my heart. This tiny, three pound ball of fire was fighting for her life and in that moment I sure as hell was going to make sure I did everything I could to help her become the strongest little lady there ever was.
Before beginning this post, I want to clear up one of the biggest misconceptions I have been asked about before and since surgery… “so, she’s all better, right?” People want definite answers, and I get that being someone who has always had difficulty with the grey area. Spina Bifida is not one for providing “definite.” First, the surgery does not FIX spina bifida. Her SB defect will NEVER go away. She was born with it. The surgery is simply to REPAIR her back in hopes that it will help prevent any further damage to her spine. Any damage done before (or during) surgery is done. You can’t repair spinal nerves. Although it’s extremely exciting that our baby girl has shown continuous movement, it doesn’t guarantee she’ll be walking independently because we aren’t able to tell yet what kind of sensation she has in her legs. If you’ve ever had an epidural, you may find it easier to understand. As the medication is wearing off, you begin to be able to move your lower half but that doesn’t mean it’s easy to walk. Think of it like that. So as AMAZING as this surgery has been – and we still remain hopeful that she WILL walk independently – we truly wont know the extent of her condition until she’s about two years old or at least a year when they should begin to show signs of walking.
After closing in on three weeks post-surgery, I have finally gotten my thoughts together enough to tell the story that many people are so curious about… and to also clear up a lot of misconceptions about fetal therapy. This will most likely be a long post as I will try to give as much specific detail as possible about my experience.
Tuesday, January 9th –
Around 10pm Darius and I said goodbye to his mom and drove over to the hospital. My doctors wanted me admitted the night before so they could begin what they needed to do as early as possible the next morning.
We entered the labor and delivery unit and Darius was told to wait in the waiting area while I completed registration and paperwork. I don’t know why my husband wasn’t allowed with me but that’s a tiny pebble compared to the rest of this. After paperwork, they took me back to the PACU (Post-Anesthesia Care Unit) to get myself settled. At this point, I had been under the impression the whole time that I could stay in my clothes and we were just sleeping in a room designated just for me for the night and that all medical related things wouldn’t begin until the next morning. I was wrong. I had to change into a hospital gown (but I made sure to keep my sweatpants on 😉 ) and they began an IV (which took two nurses – I have very stubborn veins). As the IV issue was happening, a resident anesthesiologist came in. I can’t remember his name but he was going over the type of anesthesia I would be receiving the next day. He told me I would be getting an epidural… and that was it… and that I would be under “twilight” but awake the whole time. Shocked, I informed him that was NOT what I was told at all. His reply – “oh, well maybe not, I won’t be in your surgery anyway.” Cool dude. Way to make me think I will be awake for the entire 5-6 hours of this.
I was beginning to get the impression that I would remain in this little curtained off room with another woman across from me all night by myself until one nurse informed me that my doctor said I needed my OWN room. Angels came down from heaven and began to sing at this point. I mean looking back, it would’t be a huge deal if I had to sleep alone, but we had planned for Darius to stay with me because we didn’t know what time anything started the next day, and I was incredibly anxious and wanted my husband with me. After moved to my own room, Darius was allowed back and we began to settle down to sleep.
Wednesday, January 10th –
At 4:30am the same anesthesiologist from the night before came in my room to administer my epidural. This part was easy for me as I had to get TWO epidurals when I was in labor with Lincoln. They started the epidural with saline to keep the line open.
At 6am they began to start the epidural a little more and at this point put in my catheter which was super uncomfortable to be able to feel. After this, my legs obviously began to go numb a bit although I could still walk. I felt like I was wasted in high heels trying to make it to the bathroom each time… which was also fun because they measured my urine each and every time I went. The purpose was to see how hydrated I was so they could determine how much fluids I needed. Magnesium was started shortly after this and I had already heard all the horrible symptoms I would be feeling. Magnesium is used to relax the uterus and stop contractions from happening. It is supposed to make you feel sick, like you have the flu or a hangover. I wasn’t allowed to eat or drink anything past midnight because they don’t want. you to have anything in your system to throw up. I actually had no initial reaction to the magnesium and didn’t feel any different… but just wait until after surgery.
My doctors had their “huddle” at 8:30am and wanted to begin at 9:00am. And boy, there they were in my room at 8:50 ready to take me to the OR. I gave Darius a kiss, and cried the whole way to the room. Fear had officially set in. I was awake for the entire prepping of me in the OR. They did this because they want the baby under anesthesia for as little time as possible. They started by moving me as a group from the bed to the table, to which I informed them that if they messed this up or showed any signs of me being a giant whale I wouldn’t eat for the rest of my pregnancy (haha). I received an IV in my left hand from an amazing anesthesiologist who did it in what felt like 10 seconds. Then, in my right hand I received an IV into my artery to monitor my blood pressure. Instead of a cuff which takes several seconds to register, this would provide them with my blood pressure every time my heart beat. It wasn’t painful because they numbed the area with a needle first, but it took about 10 minutes to administer so I could tell it would have totally SUCKED without the numbing medicine. I was given oxygen through my nose, not a mask. My legs went into stirrups which just made me feel soooooooooooooo cute and dainty and they began scrubbing, aka cleaning, me from the stomach all the way down. The anesthesiologist began poking me with something sharp all over to see what I could still feel, and although I told her I could still feel it completely (but not as sharp) each time, she didn’t seem too worried so I guess it was okay that I could still feel some stuff.
The curtain went up in front of my face around 9:40am and my two amazing doctors, Dr. Miller and Dr. Baschat began pressing very hard on my hip bones to determine the best entry point. The whole time my anesthesiologists are asking me about my favorite vacation and favorite drink to where we get into a very nice conversation about margaritas. My favorite nurse Megan yells for a “time out” around 9:45am. If you haven’t been awake in surgery this is when they yell out all your information to all the doctors and nurses. My guess is they do this to reconfirm why you’re there in case anyone happens to be in the wrong surgery… could you imagine?!
“This is Rachael Cross, 29 year old, female. Blood type A-. She’s here for fetal surgery for spina bifida myelomeningocele. We believe starting on the L4. We have blood prepared for both her and the baby in case of transfusion.” So weird to hear my story being yelled out as if I’m not there.
At 9:50am I was told to lean by head back as far as I could (they would be intubating me), and a mask went over my face. Two deep breaths later, I was OUT.
An incision was made from hip bone to hip bone – about 12 inches long. My uterus was removed – but remained attached inside of me. A big misconception is people think my uterus was like taken across the room or something. No, they place it on top of my stomach. Although this surgery was laparoscopic, that portion could only be done on the uterus. They still had to open my up and remove my uterus to do the laparoscopic part of surgery. Under ultrasound guidance, two ports the size of a pencil eraser were placed on the uterus. The ports were stitched into place and these ports are where instruments would be inserted to correct the lesion. Half of the amniotic fluid was removed and very carefully measured. Then, the same amount of gas was slowly pumped into the uterus to hold the shape of the uterus. Then, surgery was performed. The lesion was opened up and the spinal nerves that were inside the sac immediately collapsed back into the spine. Then, collagen was placed on top of her back and four stitches were used to close her spine. I was told our baby girl had the largest lesion they’ve worked on so far but surprisingly, with the last baby who at that point had the largest lesion, they received the best results. She had her legs crossed and one arm tucked under her butt. She was very difficult to position and each time would roll out of that position. To fix this, they titled the bed backwards so my head was closer to the ground to help keep her in place. She received a shot in the thigh to help “paralyze” her and keep her from feeling any pain. The surgery took roughly five hours and at 3:30pm, Darius received news that I was being stitched up and would be moved to the PACU.
My amazing doctors were able to take pictures of the baby inside of me throughout surgery. We were able to see her little legs, feet, hands and most importantly the lesion that started this whole journey! They may seem a little squeamish to you, but they are amazing to us and part of her story!
In the photos, anything that is grey and “curly” looking is the umbilical cord. Anything grey and “veiny” looking is the placenta.
I do not remember the tube in my throat being pulled out, but I do remember being told to wake up. I can only imagine the nasty face I had when they woke me up. It was like I was thinking, “I am so tired, why the hell are you waking me up?!” But then I registered where I was and immediately felt pain on my left side. I was groggy and couldn’t see right and also very disoriented. I remember being asked if I wanted to see Darius. He told me we had the same conversation for about an hour. He said it went something like this.
“I love you.” “I love you too.”
“I missed you.” “I missed you too.”
“Aren’t you glad you don’t have to find a new wife?” “Yes baby I am glad.”
Repeat 15 minutes later.
I was put on a NST (non-stress test) to monitor the baby’s heart rate for about two hours. She was doing so, so well. They were also monitoring my contractions. Anytime you mess with the uterus, it will begin to contract. I had about 7 total contractions while still on the magnesium. I remember my entire mouth being so dry. Between being intubated and the anesthesia and magnesium, my lips were literally sticking to my teeth. I couldn’t talk right and my voice was hoarse. I felt like my entire mouth was coated in sand. A nurse let me have some ice chips and it was probably the greatest gift I had ever been given. I can’t even begin to explain how awesome ice chips were in that moment. Shortly after, I was allowed to start taking sips of water which was the next best thing that’s ever happened to me.
I had to remain in the PACU until I had feeling in both legs again and I could move them, but my right leg was super stubborn and not responding. Thankfully, I had one nurse who, after four hours of being in there, finally allowed me to be moved to my own room with Darius.
Shortly after arriving to my new room, I told Darius an my nurse that I wasn’t feeling very well. I told them I felt like I may throw up. Keep in mind, I was totally still sedated and numb. I could barely talk let alone move my body. Those two began moving at the speed of sloth because right after I said that… here it was…. vomit, all over myself. I couldn’t move! So four times in a row just vomiting all over myself. It was HORRIBLE. And then, they had to rotate me to help clean me off! I was no help and I physically couldn’t be! I could hardly feel anything let alone sit up or help take off my hospital gown. I still feel bad about that but I’m hoping at some point in my marriage that when I tell Darius I think I will throw up that he really knows that means, I AM going to throw up NOW.
Thursday, January 11th –
Thursday was a bit of a blur. I was lucky to remain out of pain thanks to my epidural and my oxycodon. A lot of people ask if it was safe for the baby for me to be taking oxycodon. Well, ideally, no. But I was given this medication by my VERY knowledgeable doctors and surgeons. It’s not a drug you’d want to be taking for no reason at all, but under circumstances like mine, it was perfectly fine. I remained on oxycodon for about a week until only being on Tylenol.
We had our first ultrasound that day to check on the baby and it was so amazing. It was amazing to see that she was fine, it was like nothing had happened. But then, the obvious showed up. Her lesion on her back was GONE and it was like she never had it to begin with. She was also still moving her toes which was so exciting for us.
Friday, January 12th –
MY FIRST DAY WALKING! This was the BEST day! I had the best nurse who insisted I get the F out of bed and I couldn’t wait! My mom went down to get some lunch and when she came back I was sitting in a chair! I felt so proud of myself and being able to get up and stretch is something I will NEVER take for granted.
We had another ultrasound and everything remained awesome and. the same… and at this point in the game, the same is how we like things.
I will continue to have weekly ultrasounds until she is born. They are hoping over time to see two things:
That her hips, legs, ankles and. toes continue to move.
That her cerebellum changes from what they call a “banana” shape to a “figure 8.” This will show that the cerebellum is returning to its normal position. This will happen, if it does, way later in pregnancy. It will be a slow process. But watching the cerebellum is one of the big things that will help determine her need for a shunt after birth (the big thing we are trying to avoid).
Monday, January 15th
DISCHARGE DAY! I was sent home on Monday and it was the BEST feeling in the world. I can never thank enough the amazing nurses and doctors and surgeons at Johns Hopkins but there is no better feeling than your own bed… and being at home with your sweet baby.
I was placed on two weeks moderate bedrest after surgery. They wanted me up and walking here and there, but mostly laying down and resting throughout the day. Now going into my third week of recovery, I had permission to begin driving and trying to live a normal life again… including picking up Lincoln. Yesterday was Darius’s first day back to work and being alone with Lincoln was much more difficult than I had imagined. My organs are literally moving back to place and healing and that has recently taken the biggest toll on me. The pain is excruciating and sitting up is very painful because that pushes everything together. I am SO thankful for Darius and his people at work for being so understanding during this time and giving him the time off so he can help me heal and take care of Lincoln without disrupting his routine. I am hoping that within the next two weeks I will be back to my old self… except with a much larger belly!
Thank you to EVERYONE – family, friends, strangers near and far that have reached out or helped myself and my family during this time. You will never know how much we appreciated every single gesture.
Out of every 2,000 births, one birth will result in spina bifida. One in two thousand. Those are the odds that it could be me.
When we discussed trying again for another baby, defects never crossed my mind. Why would they? I had already gotten my miscarriage “out of the way” and then followed it up with a very healthy baby boy. I completed all the optional trimester screenings and always had fantastic results. With this pregnancy, why would it be any different?
In fact, it wasn’t different. Everything was going smoothly. I felt “better” the first 15 weeks than I did with Lincoln – I was mostly nauseous with vomiting here and there. With Lincoln, it was multiple times a day, every day, for 16 weeks. Something in my gut told me it was a girl – based solely on the fact that it was all so different. I completed all my screenings. First trimester at 12 weeks for Downs Syndrome – came back negative. Then again at 18 weeks for Spina Bifida and other defects. I got the phone call about three days later from the nurse letting me know my results came back negative, my screenings were normal – in fact VERY normal was the term used. She had an optimism in her voice, I’ll never forget that. It was as though she was thinking, “I just love delivering good news!” But to be honest, I KNEW my results would come back negative. I have a normal baby at home. I do normal things. I remember hanging up with a smile on my face and a “got that off my list” demeanor. I was ready for my 20 week anatomy scan and thrilled for our gender reveal.
Spina Bifida blood testing is only 80% accurate – leaving 20% for a false reading. False negatives are extremely rare, especially with blood work. In fact, when completing my hours of research I was only able to come across ONE case of someone sharing a false negative story.
If I become very honest here, I always knew something was wrong. I couldn’t put my finger on it and it was far more of a worry than just hoping there was a heartbeat. I knew that something just wasn’t right. There was honestly no reason to think this – except that my gut was telling me so.
Friday, December 15th
The day of our 20 week anatomy scan I was overly nervous and anxious. I felt sick to my stomach. Darius told me I was this way with Lincoln and I smiled and nodded, but I knew it was different. The screening started out great, everything was normal and the weight of anxiety was beginning to lift. And then, there it was. “That must be her tailbone” I thought to myself. And right as I went to ask, to confirm my thoughts, the ultrasound technician says, “I want to recommend you see Maternal Fetal Medicine. See this bump right here? This is a fluid filled sac, often associated with spina bifida.”
At first thought, “I knew it.” Not that I knew it was spina bifida – but that my gut was correct. Next thought, “get me out of here!” I wanted to run. Third thought, “Get this baby out of me!” I wanted it over with. Lastly, “What the hell is spina bifida?! It must not be THAT bad because she surely doesn’t seem to be too worried.” Darius proceeded with a lot of questions, most of which I can’t remember, but I do remember the tech playing it real cool, keeping the calm. She told us it may just be a cyst. “A cyst?! I can totally deal with that!”
But then, she continued to spend a lot of time focusing on the brain – not saying anything, which really bothered me. We had this tech with Lincoln and she was always so honest, except with Lincoln there weren’t any problems. About an hour later she finishes up, prints our photos, places the gender photo in the envelope, and says she’s going to go meet with Linda… the nurse practitioner.
At this point, there weren’t any tears. Darius and I were holding hands and just staring off wondering WTF just happened. Did she seriously just walk out like none of this news was something bad? We meet with Linda who blatantly, and rudely informs us that YES our baby has spina bifida, YES she has fluid in her brain and she does not know how we will sleep over the weekend but they already have an appointment for us with Maternal Fetal Medicine on Monday at 2… oh, and to “have a blast” at our gender reveal the next day. That entire encounter lasted around 3 minutes.
ENJOY OUR DAY TOMORROW!? Is she KIDDING?! I wanted to RUN from my life, from my body, from this baby. I wanted OUT! We went from hearing a cyst, to then spina bifida, to then fluid buildup in her brain!
Doctors and scientists believe, although uncertain, the leading cause of spina bifida is lack of folic acid. I do not understand why doctors do not recommend that ALL women be taking a prenatal months before conception because they SHOULD. If I had known this, maybe we wouldn’t be in this situation.
As I try to always remain honest, this part I’m about to say may disappoint, sicken, or shock people. But you aren’t in my shoes and you don’t have a right to tell me how to feel.
I wanted to terminate. We wanted to terminate. We thought our child was going to be born a vegetable. For Darius and I, that is not a life we would want our child to live. What kind of life is that and how would that be fair to Lincoln? I did not want to become best friends with nurses and doctors. I did not want to drown in debt from medical bills. I know there are so many different opinions on termination and what fulfilled life looks like for a child, and I respect those who disagree with me. In fact, I was always against termination … until a situation like ours presented itself. It forced me to see all sides and really analyze the situation closely. So again, while I continue to respect the decisions of others, I hope our thoughts and decisions can continue to be respected.
60% of parents who find out their child will be born with spina bifida terminate. Which is one of the leading reasons why there is not yet a cure. Because there are hardly any patients to help find a cure. Sixty percent.
Saturday, December 16th
Our gender reveal. We decided to continue with the gender reveal party in hopes it would give us something to look forward to. Honestly, it was anything but. Darius and I were sad and not really present. We tried hard to put on smiles but all we could think about is whats wrong with the baby and if we were going to even keep it. Through my research on spina bifida the night before I had learned that it is more common in girls. So, when that puff of powder showed up as pink, I was ecstatic to have the girl I had always wanted but also devastated because it just proved more that it was, most likely, spina bifida.
Monday, December 18th
Our meeting with the doctors at maternal fetal medicine (MFM) was nothing like we had hoped. We spent the whole weekend crying, researching, praying and searching for any positive outcome or story. Unfortunately, we didn’t get much positive news from the internet. The ultrasound tech and doctor were able to confirm that yes, the baby did in fact have spina bifida. It was the worst case, myelomeningocele (milo-my-ninja-seal), but also the most common. Worse news came – the nerves were exposed and not covered by skin, leaving them open to more damage from the amniotic fluid and bumping up against the uterus. After a two hour ultrasound, we met with a genetic counselor who gave us options and introduced us to fetal surgery. We agreed that we wanted to take steps to fix the problem before considering termination. The next day I went back to MFM for an amniocentesis, where they stick a long, skinny needle through my stomach into my uterus to draw out amniotic fluid. They would test this fluid to make sure the baby didn’t have any additional chromosomal defects.
Over the next week-
After the amnio, we were sent to Johns Hopkins a couple days later where we had a four hour appointment, including yet another ultrasound to confirm the same findings. They were able to tell us more specifically where on the baby’s back the lesion started and ended. We discussed what this meant for her leg movement, bowel and bladder control and brain function. We met with the neurosurgeon who discussed what surgery would look like for myself and the baby.
Spina Bifida effects a baby in two drastic ways. One, the spinal cord is not finished so this has effects on walking, leg numbness, bowel and bladder control, hip movement and more. But the worst part is its effect on the brain. Because the nerves are exposed, they are tugging down on the rest of the spine which is connected to the brain. The cerebellum is then pulled down into the neck, or spine, causing fluid in the brain to buildup because it has no where to go. Typically, patients who do not undergo fetal surgery will be in surgery hours after birth not only to repair their spine but to receive a shunt in the brain which allows the fluid to move freely. Shunts cause lots of problems over a lifetime and are the leading cause to death in spina bifida patients. They clog, get infected, break, fall out of place and often need repair, which means multiple brain surgeries.
The fetal surgery through Johns Hopkins is new, and yet to be FDA approved. This surgery is done laparoscopically which means I will receive a c-section, and tiny instruments will be used to make holes in my uterus and correct the baby open spine. By performing this surgery, the cerebellum should naturally return to its place allowing fluid to move freely. This surgery will increase her chances of walking independently from 40% to 80% and reduce the chance of her needing a shunt drastically. If for some reason during surgery they are not able to do what they need laparoscopically, they will remove the baby from the uterus to perform surgery on her back that way. In the spina bifida world, this is known as being twice born.
In the past 2.5 weeks we have seen countless doctors and I have been stuck with more needles than I’d like to in my lifetime. And more is to come. We are aware that no matter what, when the baby is born she will be spending time in the NICU. We are aware that her life will be different, and so will ours. But, we now feel hopeful… and a little bit of excitement. Although our current focus is on having a successful, “easy” surgery, we are looking forward to adding a little girl to our family. We have had the best family and friends lift us up in support and prayer. We have had time to grieve the “normal” baby that we had thought we would have and learn to love the new normal. We have found an enormous strength in our marriage and bond with one another. We have found a whole new meaning to unconditional love.
In the next couple weeks (and through the remainder of my pregnancy), we will be spending a ton of time at Johns Hopkins. I will be going back to many meetings with my doctors, the NICU and the anesthesia team. I will be receiving steroid shots to help her lungs mature faster in case they need to deliver. And on January 10th, baby girl and I will undergo a surgery that could improve her life in such a dramatic way. We ask for prayers, support and if you have questions please ask. We don’t need pity or sympathy as we have already moved past that and are now seeking positive thoughts only. 🙂
So, why am I sharing? Because I love to blog, and I love to be open and honest. I have been very closed off about this for the past few weeks but I also understand that as time moves on eventually people will find out. Whether its in May when she’s born or for whatever other reason. I want people to know her story, our story, and for anyone else out there currently in the grieving phase to know there is hope, there are options and your child will NOT be a vegetable. In fact, typically, there is nothing wrong with the intellect of children born with spina bifida. Their lives will be different and more challenging without a doubt, but with supportive families and an amazing team of doctors I feel assured there is NOTHING they won’t be able to do.
If you’re reading this post, that means your little one is now approaching or in the 3-6 month phase. Or, you are just wildly obsessed with baby things OR maybe it’s just that you actually enjoy reading my blog no matter what the topic. Anyway, this post will capture the top six items I found to be crucial when having Lincoln during the 3-6 month period. I still don’t know why they put together months like that, in huge chunks, because there is such a drastic difference between a three month old and a six month old – but it is what it is. Here we go…
Johnson + Johnson Hand and Face Wipes – I LOVE these little guys and buy them in bulk! They come in handy with literally anything baby related. They are good for getting boogers, snot, wiping hands and face off, and even can be used as a back up diaper wipe if you run out. They are cheap and absolutely essential.
Baby Einstein Neighborhood Symphony Activity Jumper – My mom bought this for Lincoln when he was three months old. It was PERFECT to have at that time. It comes with a bunch of activities that you can swap in and out, tethers, and a swivel seat for them to rotate (once they figure that out as they get older). It bounces and changes height position four times! Lincoln absolutely loved it and it gave me comfort to know he was safe as I quickly showered.. or did whatever I needed to do.
Chicco Stack 3 in 1 Highchair – This highchair was a gift from a students parents that I had. It wasn’t the one I originally had on my registry – it’s BETTER. This highchair is trendy, cute, and transforms in multiple ways! The back of the seat reclines into several positions and the tray has several clip in positions as well. It comes with a clear tray over the regular tray for easy dishwashing or cleaning. The fabric is easy to wipe down and food/drinks wipe off super nicely! The highchair eventually transforms into a booster seat and you can also detach the highchair portion from its base and strap it onto a regular chair. My only complaint – it is a bit bulky and doesn’t fold up – but other than that we love it!
Ergo 360 Baby Carrier with Infant Insert – This baby carrier was a lifesaver! I had two carriers, a wrap and the Ergo. I could not for the life of me, even with the direction pamphlet and youtube tutorials, figure out how to wear the wrap! It just wasn’t for me and Lincoln looked so uncomfortable in it. I am hoping to master the wrap with our next baby, but the Ergo was all around amazing. Darius LOVED wearing it and actually wore it way more than I did. What’s great about it is that it grows with baby! The infant insert is essential when you have a newborn because it helps prop them up and give them the necessary support. We have ours in the grey color and love it! Only complaint – it’s a bit pricey, and a little difficult to put on (you get used to it) but overall worth it.
Babyganics Shampoo and Body Wash – I posted before about using Babyganics products and we love their stuff so much! I love that harsh chemicals are not used and everything is safe and gentle for baby. We use their shampoo and body wash and found it to be awesome! We love that it has the nice foaming pump and doesn’t burn his eyes when some gets on his face. Also, the best part, is that it doesn’t leave soapy water behind! This equals a nice, quick rinse off for baby! I do wish it had a stronger “baby” smell.
Munchkin Fresh Food Feeder – My girlfriend from work got me these and they weren’t even on my registry. I had never even thought about a teething baby. But thank God she knew what she was doing. This is the only type of teether to ever calm down Lincoln. The mesh is safe and gentle for baby to chew on. The latch is baby proof, so there is no way baby is opening the feeder to get to the food. I usually stuff a frozen piece of fruit in there, like a peach, hand it to him and he sucks on it till it’s gone! I also love that it’s practically mess free and doesn’t leave your house sticky! Also, it’s dishwasher safe! WIN!
Looking for must-haves for previous ages? Check out my previous posts…
I remember when I first started a blog, I wanted to do it as a sort of online diary for Lincoln. So, one day when he’s older he can see how his mom documented the pregnancy, and the first year month by month. And, let’s be honest here, I epically failed at that. During the pregnancy, going through sixteen weeks of sickness made me put my blog completely on the back burner. Once having Lincoln, taking the roller coaster of postpartum depression, having a newborn, and then heading back to work caused the same thing to happen – my blog just wasn’t a priority. But now that it’s summer, that I’ve become a SAHM, my blog is a huge priority in my life once again! And I am thrilled about that.
With all that being said, let’s dive into what Lincoln was like at 10 months.
I think I remember saying somewhere around him turning six months that it was my favorite age. Well, it just keeps getting better. Lincoln is crawling FAST all over the place, he cruises on furniture, and plays so well independently. His favorite toys are balls and he throws them all over the house and chases after them.
He is eating like a grown man already – his favorites include chicken nuggets, yogurt, cheese (he IS MY child), raspberries, strawberries and banana. We offer him tons of other options, basically everything we eat. He had his first introduction with a donut and dives face first into my soft serve when we go out to get it.
Lincoln says “uh oh” “mama” “dada” and I keep trying to teach him to be gentle so he will mimic the word gentle, and I can tell he’s trying to say it, but he really only gets the final sound.
Next Saturday, Lincoln will be 11 months old and I CANNOT believe it. Where did my baby go? Time really does fly. Darius is already considering asking Lincoln to start paying rent soon. Kids these days, solely reliable on their parents.
If you have been reading my blog(s) for a while now, you know I always aim to be honest. Even if that means not appealing to all the different groups out there. Well, today is another one of those posts.
More often then not as I scroll through social media, I see the mom shaming and the mom bashing. I see the hashtags, the photos of your little one, the photos of you being perfect. I see the Facebook groups you are a part of, the posts that you share and the comments you make. I see it all.
Now let me just say this, although I have used my blog to express a lot of truth about my rocky journey into motherhood, I also hold a lot back. Why? Because I feel shame. I feel shame because of those moms.
The ones with their very, very clear expressions about how their child should sleep – co-sleeping, bed sharing, anti-cry-it-out. The ones faithful to the boob – the exclusively breastfeeding, the “I don’t care when my child weans”, the “baby led weaning”. The ones who don’t need a wink of sleep but complain about their exhaustion. The ones who are against store bought purees, against non-organic options. #ebf #breastfeeding #anticio #babyledweaning #noformulahere #nastypurees #illsleepwhenimdead
I could go on and on. Let me say this – I HEAR YOU. WE hear you! WE – the ones who don’t meet your expectations as a mother yet we don’t have expectations for you. The ones who had a very painful, rough start to motherhood, who didn’t feel adequate from just hours after our baby’s birth. The ones who hated pumping at work and looked forward to the day that their baby was weaned. We are the ones who had to use formula and breastmilk because breastfeeding wasn’t working out as society had made it to be. We are the ones who don’t have time for, or maybe just aren’t interested in making homemade baby food. We buy Gerber’s purees and on a good day, I buy the organic kind. We are the ones who can’t always afford organic so we settle for the generic version. The ones who go through CIO here and there, maybe consistently, maybe not, because sleep helps us be better mothers. We. Hear. You.
In fact, on Thursday Lincoln had a donut for lunch. A donut. And Monday at baby story time at the library, he threw his first actual meltdown. He screamed and cried the entire time. I knew he was tired because he missed his morning nap but we were there at the library so we were going to make it through that session. And when I got home, I gave him a nice warm bottle of FORMULA and laid him in his crib. In his crib, he cried for a bit and I WALKED AWAY. I had to. I needed a break. He had been on a crazy episode for well over an hour. I have a right to walk away. And ten minutes later, I went back in and rocked him and he fell right asleep. Guess what? When he woke up, he was happy to see me. And my pediatrician reassured me that his brain isn’t in stress or feeling neglected because he has to cry by himself sometimes. He told me this because I told him about all the crazy articles you share. I’m not neglecting my child.
So please, stop with the hashtags, the article sharing and the hurtful comments that indicate you are a much better mother than the rest of us. Because at the end of it all, one day your child will be eating leftover French fries off the floor of the car, or licking mud, or eating Domino’s pizza from a friends house. And our kids will be in the same classes and they won’t be discussing the time their mom let them cry at 10 months old or how their mom is better because she never, ever let their mouth touch a puree pouch. No. They’ll be talking about the latest TV show, movie, sports, toy, or maybe classroom drama.
In the end, after these couple of baby years are over, none of this stuff really matters. We are all equal. And all I have ever cared about all along, from day one, is that my baby (and yours) is happy, well fed and has parents that love him dearly.
This is one of those posts that I have been a little hesitant to write only because I feel like there are so many mixed feelings, misconceptions and stigmas associated with being a stay at home mom. Let me start by mentioning that being a stay at home mom has always been something that I have wanted to do and have seen myself doing. I absolutely love teaching, but I also really love my child. Once Lincoln was born, I knew that my time with teaching was coming to an end.
I do not find myself to be a lazy person or someone who does not want to work. In fact, raising Lincoln, being home with him and taking care of my family is one of the hardest jobs I’ve ever had – but also, by far, the most rewarding. The topic of me leaving teaching began way before Darius and I had a baby. His mother was a SAHM for most of his life and he really enjoyed having her around and looking back, he really appreciates all she did. When I mentioned wanting to leave work one day, he was ecstatic about it. So, trying to convince my husband one way or another wasn’t something I had to do. In fact, Darius was pushing me to quit my job. Right before giving birth to Lincoln, Darius was promoted to Tech Sergeant which is quite a nice pay raise. It was then that everything just fell into place. We were going to make it work. We knew it would be tight and we also knew it would not be easy, but this is what was best for our child and our family.
It hurts my soul when I hear the jokes and comments made about women who chose to stay at home with their babes. What do they do all day? They must get to sleep in. How lazy are they. Maybe they just don’t want to work? The house BETTER be cleaned and dinner BETTER be made. It’s two steps back for women. Luckily- none of these have come my way yet, but I’ve heard them before, even from those who knew this was the direction I wanted to choose. So, let me go ahead and clear up some things –
What do I do all day? In my short amount of time being home with Lincoln full-time, I am the least bored I have ever been. My day is 24/7 but really it starts about 6am when he wakes up. We go downstairs and play for an hour before breakfast. I make him breakfast, unload the dishwasher, feed him, pack lunch for Darius (because it saves us money). I make myself and Darius breakfast, clean up breakfast while Lincoln watches Bubble Guppies, get Lincoln dressed for the day and then we play some more. We practice walking, talking and following commands. By 9am, it’s time for his first nap. Sometimes I nap too (usually when he was up a lot the night before) and that’s okay with me. Other times, I do a chore like fold the laundry, vacuum, whatever. I will even try to do an in home workout. By 10:30-11 he’s up and we head off to the library, run errands, go to the commissary or whatever I need to do so it won’t be done on the weekends during our family time. By 1:00 to 2:00 it’s time for nap #2. During this time I either work on other chores or I take some time for myself and just watch TV and hang out. The afternoon nap is much shorter so I take what I can get. Once he’s up, we will either go exploring some more, maybe a play date or some time in the pool. Darius is usually home by 5 and I start preparing dinner around 4:30. After dinner, Darius cleans up (holy crap yes Darius helps!), we get Lincoln a bath and Lincoln is in bed by 6:30. I load the dishwasher, run it, and Darius and I get to hang out until around 10 when I go to bed. It’s a long day and not all days are easy or even the same. Sometimes I don’t get anything done and sometimes naps are skipped or things come up.
Do I want to work? Of course I do! Leaving work was one of the hardest decisions I have ever made in my entire life. But you know what, Lincoln is only this little once and in the blink of an eye he will be in pre-school, so I am soaking it up while I can. I am also looking for part-time work to help bring in some cash for my family.
I bet the house is always clean and food is always cooked. LOL. My house may appear to be cleaned. Yes, after every day the toys are picked up and put away and for the most part I don’t have piles of dust floating around. But, our bedroom is always the last to get attention, I have piles of shit in the guest room looking for a home, we have crumbs on the floor constantly and something in the kitchen is always sticky. So, no. And we do manage to always have food cooked because eating out randomly is no longer an option for us. Everything is budgeted for and because providing leftovers and cooking is cheaper for us, I make sure we use all the food we buy. If we want to eat out one day, it’s already in the budget and planned for.
Being a SAHM is one step back for women. WHATEVER. That all boils down to personal beliefs. I am NOT a feminist and I DO enjoy a “traditional” lifestyle. Again, I have always wanted to be home to raise my kids. It’s easier on me. I was not the best at juggling career and motherhood and family. This is what I wanted. I don’t believe I am causing a step back in women’s rights, I am just doing what I WANT TO DO because that is also my right.
I hope that this was able to clear up my perceptions of being a SAHM and maybe even misconceptions for those out there who believe it’s wildly a day off every day of the year… because it actuality, it’s the exact opposite. If you’re a SAHM, leave a comment below on what made you decide to take the leap!
My goal is to get out all of the must-have baby items by age. Some of them aren’t as exciting as others, but I promise that we everything I mention to be a necessity. Included after each item is the link in case you want to shop it for yourself and your little!
Triple Paste Diaper Rash Ointment – Let’s face it – diaper rash is a pain in the ass (see what I did there?) and your poor little babe will most likely experience this at some point. As a new mom, I figured Desitin was the way to go but I was so wrong. Triple Paste is on the expensive side but it is SO WORTH IT! I am talking diaper rash that clears up in a day, people!
Fisher-Price Rainforest Melodies and Lights Deluxe Gym – This mat was a lifesaver when it came to Lincoln being immobile. For the first several months he didn’t really do much but I felt bad when I wasn’t holding him. The mat allowed him to interact, play, grasp, grab, swat, pull and play with the little animals and toys that dangle from it. The lights and music can be set to a motion sensor so they only go off when your little babe swats or makes movement. Similar here.
Boon Lawn Countertop Drying Rack (this one is similar) – I know this looks totally ridiculous – and trust me, I thought spending $25 on this sucker was – but I heard it was a necessity and I sure do agree. This drying rack allows for easy placement of ANY bottles or bottle parts. It even comes with cute little accessory pieces (which we have bought) to hang bottle nipples from or whatever! It’s also easy to clean and throw in the dishwasher!
Aveeno Baby Calming Comfort Moisturizing Lotion, Lavender and Vanilla – We actually went through quite a few lotions with Lincoln. Some of them didn’t clear up dry skin at all. Then, he got a little patch of eczema on his chest and our daycare provider at the time recommended Aveeno. We have loved it. It’s soft, gentle and I just love the smell. We apply it all over – including his hair and face – and he’s never bothered!
Fisher-Price 4-in-1 Sling N Seat Tub – At first you may think this tub is a little much and I went back and forth about what kind of tub to put on my registry. There were so much cute, smaller ones out there, but I knew those wouldn’t last for the long haul. This tub comes with a sling to place baby in as a newborn. Once they can kind of sit up on their own, there’s a seat insert that helps them to sit up. After that, you can remove the seat and they can sit up in the tub all on their own. The baby can even lay back and there is a little soft head rest for them. The tub even comes with a cute little water strainer toy AND a water bottle (with squirt holes in the lid) which is Darius’ favorite! He loves to use it to squirt water on Lincoln’s back and to help rinse his head off. This tub is AMAZING!
Babyganics Dish Dazzler Foaming Dish and Bottle Soap – After coming home from work every day and washing two pumping bottles, pumping parts and then two milk bottles and all the parts to those – I was OVER IT. This foaming dish soap by Babyganics definitely doesn’t make the task easier but I really love the soap. It’s gentle on your hands (trust me, I know) and foams up REALLY well. The most awesome part is it doesn’t leave tons of extra bubbles around (I know because we have also used their baby shampoo with Lincoln) so it makes for easy cleaning and clean up! I also appreciate that their products are safe and not filled with dangerous chemicals!
So there it is! A short list of the things I remember so well and remember using again and again. I hope you enjoy! Please feel free to comment below with things you believe are must-haves for your little (or you)!