“You must be busy!”

“You must be busy!”

It’s something I hear DAILY. One thing that every twin mom knows is the side show aspect of normal trips. I’m talking about the double takes, the second looks, the jaws dropping, and most of all the questions people ask.

“How on earth do you do it?” Someone inevitably asks.

“You just do it.” Is typically my response. It’s the truth though, there is no magic formula or easy button. You just get through your days the best you can.

Yes I have twin boys, yes I also have a two year old boy. Yes, I’m busy. And that’s ok.

Some days its harder than others, but everyday I wake up to three little people who have forgiven my daily mistakes and are ready to greet me with a smile (sometimes a scream too). Parents out there know what I’m talking about. You just get through the day. Lately my twins have been taking long afternoon naps (THANK THE LORD) and my daily accomplishments has been growing. That is a good feeling. Like any other parent, I know this stage is short lived. Tomorrow they could reject their nap time and decide to scream unless their demands are met. So, in this season of afternoon peace (even though it still includes a screaming toddler) I decided to catch people up on our recent happenings.

Beckett and Foster have hit many milestones lately. They are both rolling over (in all directions), smiling at anyone who smiles back, and army crawling around the house. They haven’t made it past the living room rug, but one of these days I’m going to catch them trying to make their great escape. They’ve started solid food and positively HATE eating with a spoon. If I put avocado in their bottles they’d be happy as clams, but unfortunately for them it doesn’t work that way. So we are gradually finding out about eating with a spoon and how different it is. They have some serious muscle memory when it comes to eating with a bottle. So much so in fact that they drain them pretty quickly.

Y’all, we went through 30 POUNDS of formula in the month of March. 30 POUNDS. We were on the verge of buying milk replacer from the co-op (for calves) in 50 pound bags and dumping that into the Baby Brezza.

Side note: The Baby Brezza is the most magical thing on this earth for feeding babies with formula. Press a button and you have 2, 4, 6, 8, and 10 ounces of formula. MAGIC, I tell you. Buy one if formula is your thing. Worth it.

So we go through a lot of formula and have been doing our best to spoon feed but these things take time, especially with preemies. They are still catching up to babies their age in the outside world. Some days I look down and remember the NICU days as a long time ago. but unfortunately those days never really leave your head. They are always lingering there, waiting to pull your little fighter babies back into the hospital when something goes wrong.

In the month of February, something went wrong.

Rowan is an excellent big brother, he has been the most loving kid towards the little twin usurpers that waltzed into his life. First they stole his momma for 8 weeks and then they hogged her for another 6 in Wichita and then the twins came home and wrecked his routine. But he handled it like a champ. No hitting the babies (on purpose), no yelling at them (in a mean way), and begging to hold them every chance he got. However, like a good big brother, he shared everything including a cold. For Rowan it was just the sniffles and a bad week. We shipped him off to his grandparents the moment he exhibited symptoms but we were too late. For the 3 month old twins it became RSV and lots of doctor visits and a hospital stay.

In the NICU, your doctor warns you that your preemie will probably get RSV and it will probably be a hospital visit. I prayed that wouldn’t happen. We just made it out of the woods with our first NICU visit. I really didn’t want to go back to Wesley to the PICU because my babies caught a nasty virus. However, I had no control over what would happen. Beckett caught it first and had so much drainage that he had difficulty breathing. I preemptively took them to the pediatrician and they confirmed the RSV with a nose swab and said he was going to feel worse before he would get better. I went back into survival mode. Babies were separated into different rooms, separate bouncy chairs, separate burp rags, separate bottles, separate everything. I even washed their laundry separately. For a week I sat up in the recliner with baby Beckett on my chest just to make sure he was breathing and occasionally suctioning out his nose to keep him breathing evenly. The doctor saw him every couple days and said that he was keeping his oxygen levels up but he had lost 6 ounces of weight. Precious fat on my still-smallish baby was burned up to keep him functioning normally. Then about halfway into Beckett’s cold I got nervous with how hard he was breathing. We left at midnight on the recommendation of the 24 hour nurse hotline offered thorugh Children’s Mercy in KC.

“Take him to the ER. Watch him the whole way to make sure he doesn’t stop breathing.”

She warned us not to be longer than a couple hours getting there. It was a two hour drive from our house.

I stared at him and wouldn’t take eyes off until we were cleared by the ER doc. I think I expected a trip to the PICU and when the doctor told us to get some nasal spray to loosen the mucus and go home, I was a little embarrassed. She said we did the right thing but he was doing better and didn’t need to be admitted. I sighed my relief.  5 am rolled around and Gavin helped me keep the kids asleep for the two hour trip back until we arrived home. We saw improvement with Beckett after about a week and a half of sickness. The doctor said Beckett was on the very end of his cough and then Foster started coughing. I know my kids. They don’t generally cough, sneeze, or have any drainage. Foster started exhibiting symptoms the moment Beckett brightened back up. In a way, I was thankful. Two sick babies were way worse than one at a time. Sweet Foster coughed and the doctor said he had it too. But worse.

It started all over again. The late nights watching my baby breathe and his little chest wheezing and rattling to try and function. Sweet friends sent meals and frozen food to keep us functioning through the rough days. No rest for my littlest baby meant no rest for me. Gavin muddled through his days working and helping care for the other two while I devoted my time to Foster. We held it together until one night about four days into Foster’s RSV. I called the pediatrician around closing time and expressed my concerns. They recommended that if his condition changed even a little bit to then take him to the ER. I watched him go from working to breathe to exhausted from working to breathe. Foster was not even able to eat formula. He had so much thick drainage that the formula immediately made him gag and throw up. He had been drinking Pedialyte for a couple days and staying hydrated but not getting the calories he needed. It was time to go back to the ER. I always hesitate with going to the ER. Its a fine line between going to the ER for something that wasn’t necessary and going to the ER because it truly was an emergency. The drive there was a nightmare. We were speeding and praying Foster wouldn’t stop breathing before we got there. The hour between deciding it was time to go to the hospital and the time it took us to get there he got way worse, way faster. It was incredibly nerve wracking waiting for his little body to heave a breath in his carseat and wondering how to explain our location to paramedics if Foster did stop breathing. I googled instructions for CPR on a baby and kept it open on my phone in case I needed them. I couldn’t believe how quickly Foster went from having difficulty breathing to laboring hard just to get enough air. His pediatrician had been watching them closely so I went to the hospital closest to his doctor’s office. Chest X-rays showed nothing too alarming but he was working so hard to breathe it was scary to watch him struggle. The doctor said his oxygen levels were just low enough that he needed to stay for a couple days to recover. I sighed. Back in the hospital. Gavin went home in the middle of the night after sitting with Foster and I in the ER for five hours. My saint of a mother had agreed to watch the other two kids before we left for the ER. I truly think it would have been ten times more difficult to get through these hospital stays if we didn’t have such helpful family close by to take care of our kids.

Gavin went home and gathered my necessities and sent me snapchats of our other two boys. The familiar feelings of being away for my family hit me like a ton of bricks all over again. Just when I thought the hospital days were in the past they slapped me in the face. I held Foster and felt the familiar rush of pain in my heart as we sat in the hospital. I just missed my other two boys. I thought of all the days I felt frustrated with taking care of my three boys and berated myself for every moment I wasn’t grateful to have healthy boys all at home. Then I watched my littlest baby, on oxygen and covered with bandages. They tried to put an IV in but his little veins were too small to handle it. Being dehydrated didn’t help either. Just trying to feed him made me anxious. He needed the nutrition formula provided but his little body was fighting so hard just to breathe that he could only drink the Pedialyte. I watched the respiratory therapist suction him out and tell me that time was what he needed to feel better. During the night time he fussed and slept for no more than a couple hours. I held his little body night and day just praying we’d be out of the hospital with a healthy baby.

Then on the 5th day in the hospital Foster woke up from his exhaustion. He had not needed oxygen while he was sleeping and he was so hungry he drank double the ounces of Pedialyte and even ate some formula. Foster’s big blue eyes glistened with the spark that he had lost while he was sick. He gurgled and smiled at me, loving the one on one attention. The pediatrician came in for rounds and couldn’t believe the change he saw just overnight. We were going home! Finally, the hospital days were behind us.

We left the hospital just a day or two before Valentine’s Day. I begged my mother to watch my kids for one more afternoon and I cooked up a storm. Gavin handled some serious responsibilities when I was gone, worked in the day time, took care of a toddler and a three month old in the evenings, found time to visit me in the hospital, and tried to keep the laundry from taking over our house. I made Gavin’s favorite chicken fried steaks, spicy gravy, garlic mashed potatoes, and green bean casserole as a thank you for doing all that he did while I was in the hospital.  Our littlest ones slept during early bedtime and Gavin, Rowan and I sat down to a dinner together for the first time in weeks. Rowan was so excited to have his mom and dad together. We watched Rowan’s favorite movie (Cars, because Tow-Mater is awesome) and settled back into life. The hardest part was over and we thanked the Lord for keeping us sane and bringing us through it.

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Sweet Foster on oxygen
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Spent the whole visit about like this.
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I finally got him to sleep by himself.
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Daddy snuggling Bex.
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One of the snapchats Gavin sent. Bex rode along with daddy that day.

 

Plan of Care

The conditions affecting my babies are sort of complicated and detailed. They require certain protocols and procedures at different increments of pregnancy. I’m so used to speaking this language that I forget not everyone else has this built in to their brains. I hope this explains the other questions that accompany the words Mono Mono, Encephalocele, and Meningocele.

Mono-amniotic: This means that the twins share both an exterior and interior membrane. This is the rare part of these twins.

Mono-chrionic: the babies share a placenta, this indicates they are identical and are not two separate fertilized eggs but instead one egg that was fertilized and later separated.

Encephalocele: a cyst like structure containing brain tissue and brain covering protruding through an opening in the skull, a type of neural tube defect

Meningocele: a protrusion of the meninges, the outer covering of the brain that does not affect brain function, in a sac like structure out of a small hole in the cranium (at least in Foster’s case, there are different kinds)

Procedure for mono mono twins is fairly detailed. I am probably missing steps and stages but this is as much as I can explain.

Mono mono twins are diagnosed via ultrasound early on in the first trimester. By 12 weeks gestation ultrasound is able to identify the lack of membrane separating the babies and confirm the condition. The dangers facing the babies are cord entanglement, cord compression, twin to twin transfusion, and other lesser conditions. This stage is fairly helpless medically because if something happens before the babies reach 23-25 weeks, there is little doctors can do to save the babies as they are not developed enough to live outside the womb. If their cords become fatally tangled during this stage the babies will most likely die or have serious brain and organ damage from lack of blood or too much blood. The mother will not be aware the babies are in danger. There is no indication, other than fetal movement, she will be able to feel that the babies are in distress.

Once the babies reach 23-25 weeks gestation, they are recommended to have fetal monitoring on a daily basis. This is done usually by monitoring their heart rates with non stress tests for 20-40 minutes. The normal heart rate range is 110-180 depending on the age of the babies (again, this is general stuff that I’ve picked up, not by any means a textbook to refer to). In most cases local patients can drive in to the hospital for this monitoring on a daily basis as recommended by their doctor. The chances of fetal demise go way down as the monitoring increases. We are talking a 50% decrease in fatality.

In my case they recommended an inpatient stay as it was too difficult to drive in on a daily basis. That would be 100 miles one way for a hour long test. If I stayed in the hospital the babies would have a greater chance of survival with monitoring three times a day and 24/7 care. Bed rest is also a great help. As my body moves less the babies gain all the nutrients and hopefully gain some extra weight to help them once they are born. I was given two doses of steroids at 24 weeks to ensure that the babies would have a head start on their lung function and capability. I received another set of these at 31 weeks gestation as well, simply extra protection. The magnesium sulfate was also given at 24 weeks that protects the tiny blood vessels in the brain from bursting due to the stress of premature birth.

I also received growth sonograms that detail the babies size every month. Their last sonogram a month ago measured 2 pounds and 12 ounces for Beckett and 2 pounds 14 ounces for Foster. After that point its possible for them to gain an ounce a day each. Im hoping for around 4 pound babies each! I would be tickled pink if they made that. It is a big accomplishment and head start for these guys.

I’ve gotten sonograms that also measure the blood flow of their middle cerebral artery in their brains. This can tell the doctors if the babies are getting an equal and healthy amount of blood. So far these have also had all positive and healthy results.

Foster had a MRI on his brain also. So they stuck me in the MRI and looked at my belly, specifically Foster’s brain structures. This is when the doctors officially diagnosed his meningocele, a huge improvement in prognosis over a encephalocele (because there was no brain tissue in it).

Delivery via c-section is recommended at 32 weeks by both maternal fetal specialists at the hospital I’m in. This is because in those last few weeks the twins really start to gain weight and grow in size. This puts an increased risk of entanglement in the balance. 32 weeks is a huge accomplishment. I can’t stress this enough. To make it this far and not have a emergency c section because of decreased heart rates is something to be celebrated. Once 32 weeks comes around, the babies have all that they need to live a healthy life with minimal complications in the NICU as they finish their growing process. Even this past week there have been increased drops in their heart tones. Each time the boys have pulled themselves out of it and relieved the pressure on their cords, but it has been clear that we may push our luck holding out for any longer. I’M SO PROUD OF MY STRONG LITTLE BOYS FOR MAKING IT THIS FAR!!!

My sweet Foster, has another battle awaiting him. Once the babies are born they will be taken to the NICU and stabilized. Stabilizing them could take a couple days or even a week. It all depends on how they do once they are born. After Foster is born, the pediatric neurosurgeon will evaluate him and decided on a surgery date. Hopefully that will be performed here in Wichita and we won’t have to be sent on to Kansas City. Dr G. is the only pediatric neurosurgeon in town and we are very lucky and hopeful that he can do this sort of procedure. Beyond that I really don’t know what will happen.

The NICU is a scary place for babies. Premature babies are at risks for all kinds of infections and complications because their tiny bodies aren’t quite ready for the stress yet. Parents and visitors are required to have specific vaccinations to protect the air surrounding these little ones. Hospital policy. There are babies as young as 22 weeks in this place. They are tiny and doing everything they can to fight for their lives. It is a quiet and dimmed environment meant to simulate the womb.

At this point the babies could be in the NICU for an addition two months till their original due date in December. It is all day to day progress when it comes to the NICU. I’m optimistic that it will be just as a worthwhile experience as 7 weeks in the hospital but the reality is much different. We will take one day at a time, and give our sweet boys the tools they need to grow into fully matured babies. We’ve got some fighters and all we can do is pray that God helps them through this next phase.

4 Women’s

I remember my first few days on 4 Women’s. I had my monitoring three times daily which are called NSTs (non stress tests). They were my window into the world of my boys. Those tests told me everything I needed to know. Were they under stress? Were they feeling particularly active? Who was who? Where were they laying? Who was being a stinker and running from the monitors? Every time I was hooked up there was a moment of dread. I hoped they would find two different heartbeats every time. I wanted them to pass their tests so badly. They both had to have two separate accelerations in their heartbeats to a certain level for a certain amount of time. If their heartbeats went down below 110 for longer than 10 seconds that was a deceleration. That meant someone was in distress because their cord was cramped or kinked. They had to have their accelerations within 20-40 minutes or they wouldn’t pass their tests and more drastic steps would have to be taken. I became an expert in no time on these particular tests.

The sweet nurses were gracious enough to answer all my ridiculous and repetitive questions. They shared previous experiences of treating mono mono twins like mine and helped me to realize it was going to be ok no matter what. They read me my doctor’s notes if I wasn’t confident I understood a particular discussion. They never lost their cool when I started to get nervous during a test. They never acted like searching for my babies on the monitor for an hour was an inconvenience to them. They called my babies by their names and not simply “A” and “B”. They were as invested in my boys as my family.

Most of the staff on 4 women’s has worked here for a few years. They know how it is to have patients that are here for extended periods of time. They joked, shared laughter, teased, comforted, and reassured when different levels of emotion flooded my days.

4 Women’s is a special floor for many reasons. They do it all. They are an antepartum unit, which means they take care of high risk pregnancies like mine. This could mean mothers with preterm labor, ruptured amniotic sacs, placentas that are pulling away, mothers who have trouble keeping their cervixes closed enough to keep the pregnancy going, and many other high risk situations. They also care for women’s oncology patients. Patients who are here to have any kind of female related procedure or surgery. One of the hardest jobs, I’m sure is their care for mothers who have lost their babies. Fetal Demises, as they are called come to this floor after either a procedure or to labor and give birth to their children who have passed away in utero. The amount of compassion these nurses have is something only experience on this floor can teach. They love their jobs. They love their patients. They go the extra mile to care for women. They comfort patients in mourning. They comfort patients who may not make it out of the hospital. They deal every day with what most of us couldn’t stomach.

I had my birthday here recently and over time I have met all the nurses on this floor. I can tell you a little bit about each of them, not because they talk about themselves a lot, but because these men and women have been caring diligently for my boys and I want to tell Beckett and Foster how lucky they are to have that care so early in life. As I sat in my room with my friend who I had met on this floor, nurses from day shift filed in and began to sing. Tears welled my eyes as 6 nurses sang a birthday tune. They were so sweet to care for and think of me. Nutrition services brought me a huge chocolate bar and two of my favorite night shift nurses brought me ice cream cupcakes and a cheesy chicken casserole.

When the news reached me that my precious dog had died, my nurses hugged me and handed me a washcloth as tears streamed down my face. They cared. I’ve spent 8 weeks on this floor. Enough to know they all have their own lives and their own challenges. They put that aside day to day and take care of those on their floor. Maybe they’ve faced losing colleague over the very cancer they treat, maybe they’ve faced a fetal demise themselves, maybe even a high risk pregnancy, but every day they put those things aside and care for their patients with a compassion only the best have.

I’ll tell my boys. They will know about the nurses who spent hours searching for them on the monitors, calling doctors when something in one of my tests concerned them, comforting me when I worried over a test result, rejoicing with me when I heard good news about the babies’ health, and every other thing they do behind the scenes. Beckett and Foster will know of the men and women who cared for them for weeks on end and comforted their mother. Because all the patients they have deserve to know how much they care.

Especially the babies that make it out of this hospital thanks to the staff on 4 Women’s.img_2938

 

Introduction to Inpatient

24 weeks came along and we had our regular fetal specialist appointment with all my stuff for a hospital stay in tow. It went normally and we had one more sonogram to check the babies’ growth. Beckett was 1 pound 5 ounces and Foster measure 1 pound 7 ounces. Doing good, everything was going well and development was according to schedule. The encephalocele still had no brain tissue in it. Yay!

The rest of the day after was awful. There is no sugar coating it. I have tricky veins that like to disappear in different directions. It’s a curse. The first stick hit a nerve and my arm felt like it had gasoline and a Zippo lighter igniting my veins. That was fun. I shook it off because it happened to me in the past. My veins are fun like that.

Once the IV was in came the magnesium sulfate. Originally, doctors started to use this as a muscle relaxer to prevent contractions. Studies revealed that it helped more specifically with protecting the tiny blood vessels in babies’ brains. Considering Foster’s neurosurgery after birth it was an important and proactive step in prenatal care. That stuff should come with a warning label though.

Imagine you are sunbathing. Like full on Kansas heat of the day, sunbathing. Ok now imagine you have no water nearby, or anything cooling like shade or a fan. Ok, now imagine you would love to get out of this heat but all of a sudden your muscles feel a bit like jelly. Ok, not a bit. A LOT. You are a jello salad, my friend. Your eyeballs can’t even focus on the mid day rerun episode of your favorite show. They just kinda drift around but not enough to make you sleep. The nurse comes in, and she’s very sympathetic. She has done this enough times to know you are uncomfortable. She brings you a fan and some ice water.

She asks you to roll on your side. Ok sure. She says that you’ll be getting a steroid shot. Sure, whatever. She says she’s going to have to give you this shot in your butt. WHAT? EXCUSE ME? There is no other muscle that will do the job? Fantastic. You’re pretty loosey goosey after the IV fluids so you just kinda take it. You joke that for goodness sake quit asking you if you’re ready and just shoot it. Talking about it does not help the situation. She laughs and give you the shot. You flop back over a little more sore than you were a moment ago.

These kids better freaking love you. I’m talking like flowers every Mother’s Day and daily chores no matter what.

She then takes these hockey pucks with cords attached, and squirts blue goo on them. The hockey pucks stick to your protruding belly skin and you almost squeal with surprise at the cold goo. It feels lovely on your indoor sunbathing session. One heartbeat comes through, strong and regular. Then another hockey puck with the same goo. Another heartbeat strong and clear. A third hockey puck, sans goo. You’re a little disappointed by the lack of goo. It felt so cool. She sticks that hockey puck to the top of your belly and straps them all on with blue and pink velcro straps.

Those are your babies. She’s monitoring their heartbeats to make sure they are taking the magnesium sulfate ok. Strong heartbeats between 110 and 170 are a good thing. They take it like champs at a solid 130 average heartbeat. You’re absolutely relieved.

But then, your ornery little boys shift and they move off the monitors. They don’t like being listened to and strapped down. The nurse comes back in and patiently searches around your belly for the missing heartbeat. You have a slight moment of panic until she finds the beat again. She leaves and night falls. Your poor husband is passed out on the couch snuffling as nurses come back in to move the monitors around again. However, he sleeps more than you do. A sore butt and a dizzy head didn’t make you sleepy as you’d hoped.

By morning, you’re exhausted from no sleep and ready to rest. The nurses send you up to a different floor. The room you came from was Labor and Delivery. There is medical equipment everywhere and a massive window that pours in light. The bed is hard because it’s designed for women in labor who don’t care what a bed feels like.

The new floor, is different. Instead of being monitored 24/7 they monitor you three times a day for 20-60 minutes each time. You have a softer more cushy bed and your room looks like a nice dorm. No medical equipment and you’ve got a private bathroom and mini fridge. The nurses on this floor come in and check on you  every couple hours and lab comes to draw blood every few days. Housekeepers and food services come in and clean and deliver meals. It gets kinda lonely after your husband leaves but you draw the shade and sleep for a good portion of the day. Finally, you’re here.

My To Do List

Once Gavin and I heard the words “inpatient stay”, we just looked at each other. That meant something to us. After I spent 5 days in the hospital earlier this year for a unrelated health issue, we had an idea of what it was like.

Someone had to watch Rowan. Someone had to do the laundry and the bookkeeping for our personal and small business. Someone had to think of all these things in advance.

Plus, we had just moved.

I made a list. A list in my head and a list on paper. Some days I worked on the list on paper and some days the one in my head.

The one on paper had all sorts of practical tasks. Organize office, wash newborn clothes, finish unpacking, find the missing fitting for the fridge. We all have those lists. The one that reminds us of little tasks we need to accomplish sometime soon. The kind of list that toddlers love to interfere with. Whether or not my son realized, he was the reason I put off that list in favor of the one in my head.

The second list was the one in my head. Watch another Kansas sunset. Have dinner with my parents, brothers, and sister in law one more time. Spend an entire afternoon with Rowan, playing with his toys. Hold him for a nap instead of putting him in his crib. Have a playdate with a good friend and her kids. Go on a last minute Target run to Wichita just for the fun of it. Cuddle with my corgis on the couch no matter how much hair they shed. Spend a weekend in the city with Gavin and eat at all our favorite restaurants.

I did all these. I did some of them twice. It seemed so much more important to store those memories than finish the practical list. I wish I could say that I was simply savoring the memory of our family of three. The scared mother in me was more afraid that I wouldn’t be able to enjoy those things again. Not enjoy those sort of family experiences without thinking back to a possible loss of two more family members. Would I enjoy these same sort of family moments when I came home from the hospital? Would I feel a pang of loss when I looked at my little boy and think of the two that never made it home? Would I hit a wall of postpartum depression and not enjoy anything for a while? Would my son still come running when he saw me after being away from his mother for weeks on end? Would everyone else see those first experiences Rowan would have while I was away?

So many of these questions are unanswered. However, I can answer a couple of them. Yes, Rowan would still come running when he saw me. It wouldn’t be quite the same though. He saw his mother, but he also saw the monitors and tubes attached to my arm and belly. That scared him. He’s not even two. Something was wrong with mommy. She wasn’t at home where she belonged. She couldn’t hold him for very long without having to rest. She couldn’t go outside and play with him. She wasn’t there when he learned new words or skills. She missed many first moments.

There it is. That’s the hardest part of it all. I know God has His hands on my twins. I know God is watching over our health closely and will be by my side no matter what the future holds. However, life isn’t this and that. It’s this or that. In my case, trading first time experiences with my firstborn and instead caring for his baby brothers a hundred miles away. Small sacrifice in order to do what’s best for my family. I could only hope that my sacrifice would pay off and I could bring my littlest boys home.

That’s where the faith part came in. BIG TIME. I was leaving my happy little family for the reason that the doctors told me could prove fatal for my twins if I didn’t leave. I had to give it up to something bigger than my fears. Does that mean that I can watch my son walk away to go home while I sit in a hospital bed, and experience no regret or pain? Absolutely not. It’s incredibly painful and heartbreaking.

It happens on a Sunday usually. My hardworking husband and precious little boy walk in and we have an entire afternoon and evening of cuddles, toys, playing games, and roaming the hospital in a wheelchair. We eat dinner and I give my little boy one too many packs of smarties. It feels good and normal and fulfilling. Then I hug them goodbye one too many times and they walk to the elevator. I hear my son say “Mom?”. My heart breaks all over again.

So many days were spent in preparation of my hospital stay. I googled “long term hospital stay” and read articles of cancer patients who spent months in the hospital at a time, and what they recommended you take to feel more comfortable. I felt so guilty reading those. It happens all the time. People with way worse health issues leave their loved ones for extended periods of time. We accept it as normal because of their diagnosis. It was normal for me to be in the hospital because of my diagnosis. This was all “normal”. It was normal for me to google things and pack up a suitcase with books and magazines and 16 pairs of socks. Even though it was normal to want to be prepared, I didn’t understand that I was a lucky one.

I was luckier than many of the patients I would meet. img_2695