“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.

 

A Bit of Wallpaper

I didn’t sleep at all the night before Foster’s surgery. I laid awake and prayed. I prayed until the words wouldn’t make sense anymore. Yes, it was much less complicated without brain tissue, yes the surgeon was wonderful and experienced, yes the anesthesia was perfectly safe for our little one, yes the best team was surrounding our little boy at this very moment. But I wanted God on my side. I wanted him to guide the surgeon more than I wanted my next breath.

Moms and dads out there understand. It doesn’t make sense to some people but I’d give my life to ensure my boys had the best of chances and a healthy life. Parents know what I’m saying. Those tiny beings rely on you for everything. This little boy’s life was out of my hands and into God’s. All I could do was pray He would give me the grace I needed to handle His plan for Foster.

We went downstairs to meet Dr G one last time and see our little boy off to surgery.

Dr G explained that he didn’t see any brain matter in the cyst and that he expected a hour or two long surgery. He was most concerned about Foster’s skin being thick enough to sew over the hole in his skull. Once he was able to open it up he would know exactly how to proceed. We thanked him and he walked away. I doubt there was a moment when I wasn’t crying. I just refused to let the tears fall.

I held the tears in. I sucked it up and scrubbed my hands so I could touch my sweet little boy. I couldn’t hold him and he looked so tiny in the big bed with three ivs sticking out of him, plus a ventilator, oxygen monitor, heart rate monitor, temperature monitor and others I can’t even remember.

I sat in my wheel chair (that I wasn’t too proud to use after surgery) and cupped my tiny baby and said a prayer with my husband over him.

I also have a confession.

I don’t watch sad movies.

I read the ending of suspenseful books to avoid disappointment.

I refuse to watch any movie where an animal dies.

I cringe if I hit a bird in my car.

I tell Gavin not to tell me if he hits a animal in his car.

I make him take out the mouse traps.

I’ll even scoop up a lady bug to put her outside. (Yes all lady bugs are girls in my head)

I am a rainbows and sunshine kind of girl.

I was terrified that my little boy would leave his earthly parents.

Over the past two days I felt myself afraid to go to Foster’s bed. He and Beckett were on different sides of the NICU as they hadn’t had the opportunity to move them next to each other. I was scared of going there and seeing my little boy going downhill. I was scared of going to his bed and finding out that he had passed away in the middle of the night. I was scared to go over to Foster and find that I was so attached to this little being that I would fall into a depression when the doctors told me that something went wrong during his surgery.

There. I said it. I was hesitant to go over and see my youngest son because in my crazy post partum brain it was a defense mechanism against having my heart broken.

I couldn’t handle it. I am an anticipator as a old boss of mine would call me. I want to anticipate and prevent for whatever I can. I want to look ahead and think of problems that need solved and solve them now. I refuse to go through something that is unnecessary when I could prevent it. In my head if I stayed away from Foster, I might not have as much pain if he passed away.

This is completely ridiculous. My heart would be broken anyway.

They came to take my son to surgery. And I lost it. Not in the big loud sobbing kind of way, but in the stoic and silent kind of way. Constant tears running down my face and I sat like a statue in the wheel chair next to an empty spot in the NICU. I watched the staff wheel him away and his nurse followed after comforting me with a detailed description of what to expect. But I still cried. Emotionless and empty but with tears streaming down and wetting my collar.

Gavin and I went over to Beckett’s bed and decided I needed to go upstairs and pump. We kissed our middle son goodbye and Gavin delivered me upstairs and went to grab some breakfast outside the hospital.

I pumped for about 10 minutes when Gavin came back in with a funny look on his face.

“We need to go downstairs.”

“Why? I’m not done here.” I was confused.

“The doctor called and told me to go downstairs at Beckett’s bed and they would tell us how surgery went. They’re done already.” Gavin set down the brown bag with our breakfast and grabbed the wheelchair.

My heart sank. Y’all it SANK.

I just knew something terrible happened. I just knew our little boy had something terrible happen to him. He may not have even been alive.

I stopped all my pumping and scrambled into the chair.

We nervously sat next to Beckett as Dr G walked up to us.

“It went very well, much faster than I anticipated.”

We breathed a collective sigh of relief.

“He actually had no fluid interaction between the meningocele and the skull. There was a thin membrane, almost like wall paper, that was over the skull that kept the two separated. Foster won’t even need to follow up with a neurologist. He shouldn’t have any issues developmentally. The hole in his head should close over time. I just cut the cyst and stitched the skin to his head and it went very well and very quickly. The skin didn’t have any problem adhering to his head.” Dr G explained the basics of the surgery as we sat there just listening.

So at some point in his time in the womb, a small layer had formed over the hole and ensured that Foster’s brain wouldn’t be affected in any way. There was no possible way to tell this before he was born or before surgery.

My sweet little boy had a twenty minute surgery and he was all fixed. He was all better. He wasn’t hardly at much risk in the first place, but we didn’t know that. Foster’s body had, at some point, fixed itself. There was little to no risk to our sweet boy and all his surgery turned out to be was cosmetic. That wasn’t what we were told at 12 weeks, that wasn’t what we were told at any time leading up to this day. We were told to expect a difficult situation, to make plans for a child with disabilities. The statistics didn’t say tat everything would be ok. But God did. All that worry and the situation was entirely in hand already. God’s hands.

I thanked God the second Dr G left. We went over to Foster’s bed and we saw him from a distance. He didn’t even need a blood transfusion. He lost 1 cc of blood which wasn’t even enough to make much of a stain during surgery. He had a small piece of gauze over his neck and they told us to go rest or catch up on sleep while they hooked him back up, but all his vitals were good and he hardly needed the pain medication prescribed for him.

Gavin and I smiled and hugged each other, shocked that this morning was nearing 8:30 and we had gotten such good news about our precious little boy.

We said goodbye to both our boys and we went back to our hospital room.

Gavin started making a few calls to family to tell them how surgery went and I settled into bed.

I slept like a baby till late afternoon.img_2999

Out Of My Hands

The hours following my delivery of our two boys were a blur. They wheeled me back to my labor and delivery room and I waved to my dad, my mom, and our pastor on the way past. All were very proud of me and excited to hear how the boys cried loudly after their birth.

My legs were still numb and I couldn’t feel much of anything below my chest. Immediately I felt so tired and worn out. The first hours post partum are critical to establishing a milk supply. With our first son, Rowan, I exclusively pumped for 8 months due to difficulty with Rowan’s latch. I was very familiar with the pump and how things worked. They set it up for me and I nearly fell asleep as the whir of a pump filled my ears. Gavin came back and reported on the boys for me. They were stable and doing well. They needed respiratory assistance and would be intubated soon. I nodded and laid my head against the pillow, begging for something to wet my mouth. Ice chips were enough for me as my stomach revolted at the thought of food.

Soon my time in labor and delivery was up and they wheeled me to the NICU to see my precious little boys. I was able to hold Beckett for a brief time but all I wanted to do was hold both my babies and go to sleep. Apparently thats not recommended to fall asleep holding premature little babies. They wheeled me over to Foster and I looked from a distance at my teeny little boy. Most of what they said to me went right over my head. Obstetrics is what I was used to talking about and this intensive care stuff was definitely a different field of medicine that I knew nothing about.

They wheeled me to my old room on 4 Women’s and I began my recovery. I avoided most food until later that night and dozed off and on. Mostly I asked about the boys and rested but didn’t sleep as the medication wore off and in between pumpings.

I had made it. My goal and job was mostly done. I would pump what I could to feed those little boys but they were on their own. It was up to them to fight for their little lives. It was a feeling of helplessness and great accomplishment.

The next day I felt better but was still tired and still needing strong medication. I did my best to get up and walk. Gavin held my hand and let me steady myself on his shoulder. He changed my socks for me and even helped me put up my hair. I begged for a shower and Gavin stood in the bathroom as I fumbled around with the hot water, trying to feel clean again. He was my solid rock that I leaned on. He ran to the vending machine and grabbed his weepy wife a Dr Pepper and relayed important information about the boys that I asked him to repeat about 20 different times in a row so my medicated brain could understand and process. He washed pumping parts and even held in a couple of jokes that surely would have stretched my incision. What a guy.

We made trips to the NICU, asking the nurses to explain again what desatting meant and what the heck was in a TPN iv fluid. The neonatologist in charge of our boys, Dr D kindly explained what the procedure was and that the boys were holding steady. We asked the dreaded question.

When was Foster’s surgery?

Dr D told us that Dr G would be by shortly to inform us of what the process would be for Foster. Dr G ordered another MRI to get good images of the meningocele and scheduled surgery for 7:00 am Wednesday morning. We spoke with the anesthesiologist and signed consent forms.

The next morning would be the most critical of our year. We didn’t sleep one little bit.

October 17th

October is a busy month in our family. Fall harvest is in full swing, we are taking cattle off of summer pasture, working all those cattle, weaning all the calves, and this year we added having twins to the list!
Delivery while under monitoring is almost like any other day, except at the end of the day there are babies to hold and see. In my case, it started the night before delivery. The doctors ordered monitoring the night before. This means I have the hockey puck shaped monitors strapped to my stomach THE WHOLE NIGHT and into the morning. I had been through this and knew from experience that sleep is rare when your twins refuse to sit still for the monitors. Yep, they take after their father.
After having packed the necessities for my scheduled c section, I had my “last meal”. In my case, a chicken salad sandwich and a Dunkin Donut, glazed chocolate of course. I figured why not get those babies to gain an extra ounce or two before delivery. I was definitely hoping that donut would go to them and not to me.
Protocol was to wheel me down, which I hate. I feel like an invalid. Now there is nothing wrong with a wheelchair at all, but when I’m a perfectly healthy pregnant woman and needing someone to push me along, I feel like a big fat faker. I didn’t need this chair! In one of my attempts to get up I cut my toe. Another attempt dropped my bag on the floor.
“Sit in the chair missy!” My sweet nurse Jerri, directed me.
I sat.
Maybe it was nerves, perhaps worry about having a cesarean section. Whatever the case I was a nervous wreck. I asked for an Ambien (sleeping pill) before they wheeled me downstairs. They put an order in. I grabbed my pillow tight and Jerri wheeled me downstairs with Gavin following behind, who was ready to pass out for the night.
I was wide awake as could be. Room 6 loomed in front of me, ready for my last stay in labor and delivery. Jerri hugged me goodbye and I met my evening nurse. Gavin walked to the couch and set up his bed for the night. Despite not getting any sleep the night before, there was no way I could close my eyes, even with my satiny sleep mask. I put on the hospital gown and took the nightly medication, including the Ambien, and the nurse strapped my monitors on and the babies immediately rebelled. They started their nightly ritual of running from the monitors.
Gavin gradually fell asleep and I chatted with the nurse about my last night here. I detailed my journey and lamented the fact that the babies would never stay still. The nurse reminded me that this would be the last night I was pregnant with twins and I should enjoy it. I bit my lip.
My last night? My last night. It was. I couldn’t believe the day had finally come. I slipped on my sleep mask and the nurse went to attend her other patients. I laid in the bed listening to their heart beats and savoring the last moments of their many kicks and prods. My last night pregnant with my twins. It was scary and exciting all at once.
Morning eventually came and the day went on. They checked my IV and started fluids. They readied the gurney I would be wheeled to the operating room on. My nurse ran around getting things ready and answering my many questions. Gavin looked at me and said he needed food.
“Don’t bring that back here. I’ll smack you. I’m hungry enough as it is.” I said in a playful yet very serious tone. This NPO (nothing by mouth) crap is for the birds.
“You’re strapped to that bed. I don’t think I have to worry about you smacking me.” Gavin mocked me from a safe distance. I threw my satin mask at his retreating back.
My lovely mother came in ready and excited to see us off to surgery. We all joked and chatted and another friend of mine walked in. I met Emerald during my hospital stay where we were both patients on 4 Women’s. I jokingly refer to her as my “twin” sister, as we both were pregnant with twins. There were many hours of watching birthing shows, drinking hot chocolate, and bugging the nurses with our incessant chatting between Emerald and I. We compared notes on our pregnancies and what we missed about the “outside world”. We definitely became family as we supported each other through deliveries and whatever else life on the fourth floor threw at us. Emerald was there when I needed someone and I was there for her. It only made sense that my support group would include her.
We sat and debated about cesarean sections and how I would feel after. We made bets on who would come out first. Dr. C came in and we asked him who he thought would be first out. Then we decided that since Dr. C would be the one to decide which baby would come out first that we didn’t want to make a bet with him. He would have a bit of an advantage. Dr. C asked if I had any last minute concerns, I shook my head, completely confident in his abilities and ready to meet my boys. Dr C left to do another c section before attending mine. The nurse continued to bustle around and things began to get more serious.
The nurse got a call and heard that the OR was ready for us now. I started to get nervous and excited. Gavin scrubbed up. I put my hair up and reapplied my lip chap in a nervous habit.
This was it. 7 months of waiting for this day. I would meet our boys and all I could do was hope they were happy and healthy.
Gavin and I said a prayer together and they wheeled me off with Gavin next to me, cracking jokes about having gurney races.
15 people stood in the OR ready to get me drugged up. Gavin stayed close by as I squeezed his hand as they injected my epidural. I said silent prayers during each stage, hoping things would go well and my boys would be ok. Dr C and Dr K came in as I was prepped and ready to go. Dr K was my resident physician who checked with me daily and monitored my progress. I’m sure she was as excited as I was to see both of our first set of mono mono twins. They tested my epidural one last time and Dr C assured me things would go well. After they put the sheet up my anesthesiologist kept me informed of what was happening. Did he need to? Absolutely not, but he was very kind to let me know what was going on. I was nervous and drugged and couldn’t believe what was happening. The lights were bright and the monitors were beeping steadily. I introduced myself to all the staff and joked as much as I could to keep my emotions at bay. I have pretty bland jokes as defense mechanisms when I feel too emotional. They laughed at my bad jokes anyway. The moment came. They pulled the first baby out.
Beckett William Ezell was born at 11:32 am on October 17th, 2016 weighing 3 pounds and 15 ounces, measuring 16 inches long. He immediately started to cry as they moved him to the incubator to suction and assess him.
Foster Anthony Ezell was born shortly after at 11:34 am on October 17th, 2016 weighing 3 pounds 12 ounces, measuring 15 and 3/4 inches long. He also started to cry his little lungs out. They arrived in style for sure. Their little lungs were not as strong as Rowan’s when he was born so their cries sounded much quieter but were just as thrilling to hear.
Gavin followed over to the incubators to look at the babies. I had silent tears running down my face as I joked that there really were two babies in there. My boys were here. The rest became a bit of a blur as they increased my medication once more and started to finish the surgery. I was able to take a couple pictures of the umbilical cord via one of the nursing students in the room. He was kind enough to photograph the cord that caused my babies so many problems but also gave them their life blood.
I won’t share a picture on here because its a bloody looking rope and can make someone very squeamish, like it did my iron stomach husband. Suffice to say that it looked like someone twisted a bunch of rope and tied three or four knots at the very top to make one large knot, my babies has inches of wiggle room past the massive knot the size of my fist. I truly know that God watched over them and got them to their 32 week goal. Knots in their cord, they still survived. Braided cord, they still survived. I was the recipient of a miracle in so many ways, I couldn’t count them all.

My boys, Beckett and Foster were evidence of the greatest miracle I’ve ever been a part of.

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.

It Takes a Village…

I know you’ve heard it. Don’t act like you haven’t. The quote goes like this: “It takes a village to raise a child.”. Yep. I’m going to go there. My support system. It’s what every mother needs, no matter what her situation or her baby’s situation. Raising these children is hard and without a support system it’s impossible. There! I said it. You can think I’m being dramatic, but I guarantee every mother has had someone, somewhere that offered help. Maybe it was a friendly older lady in the grocery store talking to your little one and keeping them from screaming their head off, maybe it was a friend of a friend on Facebook who contacted you about acid reflux and how different remedies helped their child, it could have been your professor picking up your screaming child during class and comforting them as you took a test. Babies are a universal language. Most people understand how hard it is and sympathize. Some people are jerks who think children come out of the womb ready to be adults and parents screw them up on purpose. Some people judge from afar and say that THEIR children would never act in such a way. These are the village idiots. Don’t include them in this post.

A support system for a new mom is invaluable, and I had a perfect little on for my first pregnancy and child. A couple of friends and my parents and in laws. I was good. I didn’t need a banner announcing that I was a new mom and needed help. I had a easy first baby. Some days were tough but I was able to get through it.

That is not the case for this pregnancy. For a while I held it all in. I really hate to tell people about my problems because I feel self centered. So many people I know face serious issues and problems every day. People die every day. Women crave the feeling of a child in their belly, who was I to worry out about the ones growing in mine? So I held it in. I told my tiny circle from my first child and received the support to keep me going.

Well then word got out. I mentioned it enough times that people realized I was facing a serious situation and there was more at stake than I had let on. People I hardly talked to came up and offered support. I have a three page list of people who offered to babysit or bring meals over. Several guys offered to help Gavin with cattle or fixing fence. I thanked them all and said when we knew what we needed we would know who to contact. It didn’t stop. People continued to offer whatever support they could.

I have been in this hospital for 52 days and I think only 6 of them have been days without visitors. Visitors that have brought me little gifts and prayed with me time and time again. Every prayer hits my heart and forms a protective wall around it. I know God has heard them all. People drove two hours and wanted to visit me.

Church family

Blood family

Neighbors

Acquaintances

I don’t even think there is a category who isn’t covered above. Literally everyone has been and encouragement to us. People have called, texted, messaged, dropped off food, babysat Rowan, taken Gavin out for a meal, offered money and so many other supportive acts. Our Sunday School and two local churches have been praying relentlessly for these boys. This blog has reached more hearts and so many have done more than I will ever know.

I didn’t want to do it, you know. I didn’t want to tell the world that my babies were facing some serious challenges. I didn’t want to admit that I had to leave home for weeks and that my husband and son were left behind. Its a point of pride maybe? I don’t like asking for help. I want to believe I can do everything my self. I’m a mom after all. I could handle this. Well, no. I couldn’t. I see that now. I see the words of encouragement bringing me out of the dark days when I just don’t understand why I’m here.  I see the love and prayers poured out on our behalf and I’m humbled.

Humbled that people care.

Humbled that people find my words encouraging.

Humbled most of all that God provided such a wonderful community to welcome these teeny babies into the world.

I wish I could write out a thank you note to every person who has reached out in a small way. I suppose thats what this post is. A MASSIVE GINORMOUS THANK YOU.

Hey, anybody who is going through a tough time. This is for you. Reach out, you won’t have to do it all by yourself. People do care and the world isn’t as nasty and bitter as it seems. It’s full of light if you open yourself to it.

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