Is There or Isn’t There

4 weeks went slowly and quickly all at once. I remember laying on the couch the night before we were to have another sonogram and appointment. I told Gavin how badly I didn’t want to go. Then telling him, “Well, I actually do want to know, I just don’t want to go through everything tomorrow and wait for results.”

“I know, babe.” Typical guy answer, but really there was nothing he could say to make me feel better.

I prayed for an extra long time that night. I knew God was in control and tomorrow was completely in His hands. I wanted to pray that he would fix everything and there would be no trace of the encephalocele, but instead I prayed that His will be done. If it was His will that our baby died at birth, then I knew that He would see me through it. That sounds high and mighty, I know it does. Really, I couldn’t handle anything without God’s peace. I felt so much ease about the pregnancy at this point, I didn’t want to face any bit of this experience without that peace. That was the truly frightening thought. Going back to that state of uncertainty and dread wasn’t an option. I knew I needed His grace to bring me through.

Jitters permeated my stomach even after a substantial breakfast. I watched my hand shake as we waited in the lobby and were finally called back to the sonogram lab. Gavin squeezed my hand as I climbed onto the table. Any woman that has had one of those things knows what I’m saying. It’s undignifying. You’re looking like a chimpanzee trying to crawl over a paper bed and splaying your body over the table, ready to be poked and prodded, doing whatever it takes to ensure a good scan and images.

Our sweet sonographer talked lightly during the scan and started with heart beats. Every scan started with heart rates for several reasons, but in my case, they wanted to make sure that both babies were alive. The reality is that all of my monitoring start with a little feeling of dread, knowing that they could find nothing. However, the first thing babies did was kick at the sono wand and liven up the party. Thank goodness. She moved the goopy wand towards Baby B, knowing how anxious we were to hear the news. Did his brain matter travel? Did it migrate into the cyst and dim our son’s abilities as we were warned it would? Was the encephalocele filled with the most important portions of the brain that control movement, vision, and basic life function? I don’t remember holding my breath but the sonographer told me to relax and just breathe easy. I blew out a whoosh of air as her wand landed on Baby B. There, on the back of his head was still a bubble. She zoomed in to get a closer look. Yes, most certainly still there. Sliding over to the actual brain she examined what she could see of my tiny baby’s head. Now, I know a bit about what I’m looking at after having so many of these but that baby’s brain was something I couldn’t distinguish. All I could see was gray.

“It looks like the encephalocele has not grown. It is the same if not smaller size than when you were last here.” She took some measurements and froze a couple of images to document this critical stage.

“It also looks like your baby has a perfect brain. His ventricles look normal and no brain matter is visible inside the cyst at this point. There is only fluid and some small amounts of meninges tissue.” She kept scanning and clicking images to save them to her files, unaware that she had given me the greatest news in the world.

I could have leapt off that table and hugged her. She probably would have called security but it would have been worth it. I could have done a backflip in my maternity jeans and not even that stretchy navy panel, meant to keep my pants up, would have stopped me. Any physical accomplishment was possible for me to achieve at that point. But, being the unemotional robot that I am, I looked at Gavin and squeezed his hand with silent tears running down my cheeks. We exchanged a look of relief and reassurance  Our precious and prayed for little baby was going to be ok. The chances of long term disability were as small as they could be if his brain stayed in place. Tiny, minuscule, unremarkable, teeny, microscopic and highly unlikely. Those words gave me the hope I desperately wanted. God had given us a miracle unlike any other

She announced that it was in fact, boys in there and I smiled, unable to care about anything else. They checked all the babies’ organs and anything else they could see. We saw teeny little fingers and toes. We saw profiles and one baby even turned his face towards us. By the way, if you see a sono picture of a baby facing you, its creepy. Maybe not to you but they have no eyeballs that show up so you’re basically looking at a moving skeleton head. Always creepy to me. Even though my boys will be so precious in all ways, their creepy little skeleton faces were not the image I wanted to carry around with me. I’ll just focus on the cute toes and profile.

Two hours of scanning revealed an in-depth analysis of what our babies’ bodies looked like. I slid off the table as the nerve pain in my lower back started up, another side effect of pregnancy. I was glad to feel the pain, as it meant these babies were growing and putting pressure on all those joints and bones. The sonographer printed off 20 tiny images and passed them to me with a smile. I waddled along back to the waiting room as Gavin carried my bag and opened the door for me. Still stinging a bit from the nerve pain, I slouched into the couch. We didn’t say much just smiled and squeezed each others hands. The nurse called us back into the clinic room to meet with the doctor. I hoisted myself up and waddled along a different hallway.

I was incredibly grateful they put us in a different room than last time. I had no interest in reliving those terrible moments that happened just a couple doors down. The fancy tablets provided for patient boredom loomed in front of us. Gavin gave in and started playing some sort of loud and annoying game.

After I had enough of the ping ping noise I asked him to shut it off and he told me I was a kill joy with that lopsided grin of his. Eh, thats my job, honey. The doctor walked in and told us what we already knew. There was no brain tissue in the encephalocele. The only thing in there was the meninges and that simply protected and covered the brain, and had no effect on brain function. We breathed another sigh of relief. Baby B had a good brain and a fully functioning heart from what they could see and a healthy heart rate. Baby A was identical in the sense that he had a perfect brain and heart too. Everybody had their fingers, everybody had their toes. WE WERE BLESSED WITH TWO HEALTHY LITTLE BOYS.

However, that meant a long road ahead. At 23 weeks, when the babies reached the age they could live outside the womb, I would be hospitalized. I would have lots of tests and monitoring run daily and my sole job was to grow these babies and keep them in there as long as I could. 32 weeks to be exact. That meant 9 weeks away from home consecutively. No breaks or days to sneak out for a couple hours. My life was the hospital. At 32 weeks, they babies would be born via caesarean section. This had to be a c-section because if I tried to deliver vaginally, one baby would come out and pull on the other baby’s cord and cut off their supply killing the baby left in the womb. After delivery, they would be taken to the NICU immediately and stabilized. Dr. G, a pediatric neurosurgeon (the only one in Wichita),  would go and examine Foster, telling us specifically what would happen and how soon he would need surgery. Most of the time it is as soon as possible following birth.

So my precious baby who would be around 4 pounds and 17 inches long with a head the size of your palm, would have neurosurgery as soon as possible after he was born. It blew my mind.

I knew it was a possibility and most likely what would happen, but still. Neurosurgery on a preemie? It sounded as risky as could be. However, it was necessary. Dr. G would cut the cyst, drain the excess fluid out of it and put back as much meningeal tissue as he could into the skull, then graft something over the pinky sized hole in his head and remove the excess skin from the cyst. Foster would wear a helmut to protect the vulnerable portion of his skull.

The babies would stay in the NICU for an extended period of time. Most likely at least a month or possibly until their due date in mid December. That meant from mid August until mid December, I would be in Wichita for a hospital stay for me and then a hospital stay for the boys. Gavin would be left at home to continue working including corn and milo harvest, switching cattle from pasture to corn stalks, building fence, winter tax preparation and watching a toddler.

Gavin and I sat back, bombarded with information. We could do this…right?

 

We Sing Hallelujah

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Some days went quickly and some days went slowly after receiving the news about Foster. After spending a good two hours on the porch reconciling with God, I felt the peace I so desperately wanted. That sounds unrealistic and totally corny, I know. I’m not lying. I woke up the following Saturday, feeling like a huge piece of time had passed. Does that make sense? You’ve had so much happen to you in such a short amount of time you have to look at the calendar and make sure you didn’t miss something? That’s what it felt like.

That week, more like 4 days to be exact, changed my outlook. God changed my outlook. We had a chat and I mean I asked Him a million questions (that control thing again) and He answered with one sentence.

Trust in Me.

I kid you not, that was His reply. Put your money where your mouth is and give it a shot. You don’t have anything to lose. So I did. Feeling that conviction deep in my soul, I made my choice.

You know how when you have something heavy on your mind, you find your thoughts wandering back to it? That didn’t happen. Sometimes, when I am contemplating a decision, I feel the urge to make a plan of action and write down my options. No urge this time. God had given me my peace I needed. He didn’t give me a solution right away, but the peace was enough. I felt like I could function again. I could laugh and smile. Hug my son without feeling guilt. Tease my husband and spray him with the kitchen faucet when he was irritating me (50% of our marriage is one of us bugging the other). I was allowed to breathe again because God had taken the reins.

The following Sunday, once again only 4 days after the devastating appointment, I hurried to make it to church. We live a good 40 minutes (when I drive) or 30 (when Gavin drives) away from town, so there is little room for error. Most of these days I had intense morning sickness so I brought a water bottle with me and some Wheat Thins (the loudest snack in the world by the way). After chugging half the water bottle, I felt the urge to get some fresh air. A strong urge. The kind any mom with morning sickness knows well. The kind that usually means, GET OUT OF MY WAY. I looked up at Gavin ready to ask him to move so I could get out of the sanctuary without turning green. He looked at me and smiled and squeezed my hand. Suddenly, my stomach didn’t feel so bad. I gave a small smile back and decided to let the sickness pass if I could. It passed quickly and my need to run outside the building was stopped. I turned back towards the screen and recognized my dear and talented friend walk onstage. The music started and it hit me how I knew that song.

I froze like a block of ice.

The feeling started in my heart and traveled the length of my Sunday clothes. My skin immediately raised goosebumps and my hair stood on end. She slowly brought the microphone up to sing the first words and I felt the tears well behind my eyes.

She was singing THAT SONG. The song “Forever”. The song that reassured me, that my sons would always be mine, no matter their earthly or heavenly location. The song that reminded me that God was capable of whatever I set in front of Him.

My hands gripped the chair in front of me as I steadied myself and let the tears roll silently down my cheeks. White knuckles stared back at me when I looked down, unable to focus on anything but the conviction in my heart. I had almost missed it. That urge to go outside and get some air almost cost me this moment of silent acceptance that was for me only.

Call it what you want. Call me a liar, gullible, an opportunist, or unrealistic. Our wonderful music pastor, Jeff, hardly ever plays the same thing every Sunday. He has a heavenly gift for combining music in the most beautiful way and unknowingly had given me one of the most precious moments in my relationship with God that I had ever experienced.

He spoke to me. He reassured me. He was sending me a message, loud and clear and just for me. Even now, I think of that moment. It’s overwhelming. My friend, Andrea, who sings that song, has a special way of performing that conveys the deepest possible meaning of those words. You look around when she sings and there are many teary eyes. I’m telling you its not just hormones in my case. It’s the ultimate form of worship to feel that connection with music and God had given me that particular Sunday to connect with Him.

Shortly after the service I sought out our Pastor. Steve is a Godly man who personally baptized Gavin and I two years prior when I was pregnant with our first son. I’ll always be grateful to him, that he didn’t let my 7-month-pregnant-self slip when I came out of the Ninnescah River. So many times over I would listen to his Sunday sermon and wonder how he knew exactly what was on my heart. One day we spoke and he was there when I accepted Christ as my Savior. He’s seen me grow spiritually and was the natural choice for advice and encouragement. Gavin and I found him, and explained the situation. He had been somewhat aware of what we were facing and just listened as I relayed our latest doctor visit. Pastor Steve has the incredibly capacity to simply listen. He told me that he and his dear wife, Shirley, would be praying for us and for baby Foster specifically. He reminded us to keep firm and seek God first. He shared with us how far he had seen us grow and how, with God on our side, we could handle this. At this point, speaking about my sons and their diagnosis was particularly difficult for me. I smiled and thanked him as best I could without breaking down. Churchgoers milled around us reminding me that he had other matters to attend that Sunday. We promised to keep him updated and I had no idea just how invested Pastor Steve would become in our little boys’ lives over the next few months.

 

Giving Up

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It was maybe two days after I came home from the devastating doctor’s visit. I started texting a close friend of mine. I explained everything. The complications and the risks and I admitted for a moment I considered aborting one baby.

She never once judged me. She consoled me and encouraged me and most importantly, reminded me of something. I was asking for God’s grace when I didn’t need it yet. Asking for His grace meant I was dealing with a situation that hadn’t happened yet. It wasn’t a given that my son would be disabled and here I was telling God how unfair the situation was. As Rowan’s pediatrician reminded me, it’s hard to base all your opinions on a sonogram. Until I saw that baby in person, there was all sorts of chances of minimal health issues.

However, I was angry with God (whether or not I realized it) for giving me this news. I expected Him to fix everything and make it ok. I was bargaining with God. I was trying to control the situation. If you’ve read the stories about God and his people in the Old Testament, there is a recurring theme. Obedience. He asked them for their simple obedience and trust and they refused to fully submit and fulfill His wishes. How could I expect to be any different? I wasn’t truly ready to submit myself to Him. I was putting stipulations on my faith. It was my ransom demand. Fix my baby and I’d commit.

She reminded me that one of my chains I need to break free of, was control. The crippling kind that verges on obsessive. I had to have things just the way I wanted them. There was no margin for flexibility, error or even LIFE. Life wasn’t going to get in my way. Satan had used that chain and placed a faith-breaker directly in front of me. My baby’s life. If I could just “clean that up” I would have a much easier life.

God was giving me the chance to break free of that chain. He was giving me an opportunity to ask Him to take charge. I texted my friend back and told her that was it. I refused to give in.

Some of you are probably thinking about how I come back to the abortion issue. For me, I never realized how quickly that question could sink into my life. You asked me a week or even five minutes before that appointment and I’d have a strict answer for you. The reality, once again, is that YOU DON’T KNOW WHAT YOUR WEAKNESSES ARE UNTIL SATAN USES THEM AGAINST YOU. Satan cornered me and I started to weaken considerably.

She shared this picture with me.

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I knew what I needed to get through this situation. The peace of God that transcends all understanding. I put my phone down. I went out to my front porch.

It was probably 9ish so it was getting dark and the bugs weren’t that bad yet. I sat on my front step and looked above me.

Rowan was asleep ad Gavin was working one of his many late night (side effects of farming) so I was by myself. Well, there were two corgis out there. It was late and they needed to pee so I let them interrupt my solitude. You can’t say no to a fluffy corgi begging you to pet them.

I stretched my legs onto the step in front of me and looked up. It was clear and the stars were very visible. A great thing about Kansas. The skies never disappoint. I remembered a song by a favorite artist of mine. “Western Skies” by Chris LeDoux. Now I live in the Midwest, but I think it counts. Chris sings about peace of mind and the prairie moon. He talks about coyotes howling and on this particular night I could hear just that. My dogs know to stay close but its always chilling to hear them close by.

The coyotes reminded me of the one who wanted me to give up. Satan’s call was just as chilling once I remembered what it meant.

I looked up to the sky and I started to cry. There were five gallon buckets that could have overflowed with my tears that week. I couldn’t control it. I ranted at God. I told him it was unfair. Teenagers who gave up their babies had perfect ones all the time. I was jealous. I was mad. I was hurt. Why did my babies have to be the ones to suffer?

Then a thought popped into my head. Why me? Not one that rang of pity. One that rang of question. Why did He choose me? Why did He ask this of me?

Honestly, I was convicted in this moment. I was reminded that we are all put through the fire. This baby needed a mother and father who would stand up for him and show everyone what an amazing gift this baby could be. Baby Foster needed parents who believed in him no matter what. He needed a protector and God had chosen us. Not my neighbor. Not a vulnerable teenage girl. God was asking me if I could break my chains of control and fulfill the life Christ had called to me. Starting with this teeny tiny human the size of a lime. God had formed him with me in mind. What could this little boy accomplish with a God mightier than all on his side and earthly parents who had wholly invested in his life?

However, for this to happen I had to give it up. I had to give up my worries and my stresses. I told God how badly I wanted to do this and how much I wanted to give Him control. I needed to give it up in order to remain sane. It would eat me alive if I let it.

I did. On my front porch step I gave it all to Him. Every worry, insecurity, surgery consultation, blood test, sonogram reading, MRI imaging,  and my uncertainty of our future.

The song I mentioned in a different post was called “Forever”. I first heard it sung by a very talented friend of mine in church. I found it on my heart and began to sing. Softly, because I’m a terrible singer and I didn’t want to encourage the coyotes howling nearby.

She sings,

“One final breath he gave
As heaven looked away
The son of God was laid in darkness
A battle in the grave
The war on death was waged
The power of hell forever broken
The ground began to shake
The stone was rolled away
His perfect love could not be overcome
Now death where is your sting?
Our resurrected King
Has rendered you defeated
Forever he is glorified
Forever he is lifted high
Forever he is risen
He is alive, He is alive!”
It reminded me that Foster may die. He very truly had that chance. The statistics basically ensured it.
The name Foster means exactly what it sounds like. Webster defines it as follows,
“verb
verb: foster; 3rd person present: fosters; past tense: fostered; past participle: fostered; gerund or present participle: fostering
  1. 1.
    encourage or promote the development of (something, typically something regarded as good).
    develop (a feeling or idea) in oneself.
    • “appropriate praise helps a child foster a sense of self-worth”
  2. 2.
    bring up (a child that is not one’s own by birth).
adjective: foster
  1. 1.
    denoting someone that has a specified family connection through fostering rather than birth.
    “foster parent”
    • involving or concerned with fostering a child.
      “foster care”‘

If you went through that big old list then you know that it’s a complex word. Gavin grew up with a boy when he lived in Oklahoma City named Foster. He lost his dad at a young age and he was always a great friend to Gavin. We decided that we loved the name. When it came time to pick names we knew it was high on the list. When we found out about the encephalocele, honestly I thought I was having girls. ONLY GIRLS COULD MAKE ME THIS SICK. That was my one thought. I realized that when the sonographer said boys that I had lots of boy names to choose. Foster floated to my mind. I looked at Gavin and asked him to google the definition. I’ve always known what it meant but I wanted to look deeper than the surface. You know, in case it was like Sanskrit for poop or something. Couldn’t name my kid poop because I failed to google a simple word. Anyway, it struck a chord when Gavin read this particular part of the definition:

“encourage or promote the development of (something, typically something regarded as good).
develop (a feeling or idea) in oneself.
“appropriate praise helps a child foster a sense of self-worth”‘
As a parent you do your best to help you child see when they accomplish something and do a good job. You want them to feel loved and secure in knowing they are loved. It’s the simplest goals that are the hardest I think.
If anything, I want these boys, especially Foster, to know how much he is worth. To me, to his father, to his grandparents and MOST of all, how much God values him. He values his life immensely more than I could ever express. God values all lives and I want all my boys to know that. They have something unique and special to offer to serve their Lord and Savior. They were created for this. I’m so disappointed in myself for ever letting the word abortion creep into my mind. It hurts my heart. These days I see evidence of my sweet boys’ strength and personality when they hook me up to the monitors in the hospital. EVERY DAY Foster is the active one, the ornery one, the one who moves and kicks his momma to say “HEY, I’m here and alive”.
God gave me a chance to have these babies and I refuse to fail Him. He never failed me.
The adjective part of the definition of Foster is particularly soul searching for me. “denoting someone that has a specified family connection through fostering rather than birth.”
The hardest part of this pregnancy is the unknown. My babies could die any second. My boys could be taken from me five minutes after passing one of their monitoring tests. Thats my daily reality. Accepting that never really happens. I’ll never accept that my babies might be taken from me. They will always be mine. I think when we think in terms of loss during pregnancy, we think that there was something wrong with the baby and thats why the baby passed away. I believe that, yes, some babies have health problems from conception but every baby is perfect. In every way. Maybe they didn’t make it to this outside world but they lived and they were perfect. Thats the most important thing. THEY EXISTED. We, as mothers, fathers, and grandparents always remember them. They don’t really ever disappear from our hearts. I have little in terms of comforting words for those suffering a miscarriage. Years ago, I experienced one and its a loss thats permanent. You never truly recover, in my opinion. I knew it was a likely possibility with Foster and he could be borrowed. Borrowed in the sense that he belonged with God and I would have him for a very short time. Even now as he kicks me I know I may lose him. God may take him back.
I am only a Foster parent. My child in his entirety belongs to God.
In the Bible you may have read or heard about a woman named Hannah. She wanted to badly to have a baby and promised God that her child would be his. She would carry him for a short time and raise him to serve God. She had a beautiful boy named Samuel who went on to serve as the high priest to God. She kept her word.
I don’t have the faith of Hannah. She was a stronger woman than I. I have other boys that God has blessed me with so I will never truly feel alone physically without children. I will, however, keep my word. I am fostering this baby until God calls him back. It may be 5 minutes from now or it may be when he’s 16, or it may be when he has lived a long life on Earth. Thats the reason for his name. Foster Anthony, after my father’s middle name. It’s so important to me to have family names. What are we without our family believing and supporting us? Earthly AND heavenly.

Dark Turns Light

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After waking up, I remembered my bad news. Both my babies had high risk of entanglement and ultimately fetal demise, but I also had a baby with a serious brain complication.

The weight came crushing back down. It’s never a “day off” for a parent and it occurred to me that Rowan had an appointment with his pediatrician that day. I briefly wondered if my twins would ever see their 18 month checkup. After loading Rowan up, we drove the forty five minutes to his doctor, Dr. W.

How could I drag twins and a toddler to the doctor as often as I would need to for a child with serious disabilities? It seemed insurmountable. I was a 12 week pregnant mom worrying incessantly about the future and being a good parent to a child with special needs. It absolutely scared me. Gavin and I had already decided that we would do whatever it took to care for these kids.

Immediately, that included extensive sonograms each doctor visit, being admitted to either Wichita or Kansas City hospitals as a inpatient (never leaving the hospital) until the babies were born (8 week stay), c-section at 32 weeks, neurosurgery on my newborn, and extended NICU stay. My first son was the textbook definition of a normal pregnancy. This was a daunting year. Not to mention potential complications of neurosurgery on a premature baby. Long term? Who knew? Maybe regular appointments with a pediatric neurologist, maybe special bandaging for the baby’s head, maybe a special helmut to protect his skull and brain, maybe a device that drained excess cerebral fluid that was attached to his head, maybe a special school to help him learn at his own pace, maybe long term care, or even frequent hospital stays. I had no idea what to expect. There was no way for me to know.

I took my sweet little boy back to a clinic room and awaited the pediatrician. My oldest always excelled at these expectations. Rowan’s cognitive development was always just a tad advanced, his size was in the upper percentiles, his milestones were early and frequently occurring. It was hard to think that after such a normal healthy baby I would have two kids with so many more challenges facing them.

Dr. W. came into the room and smiled like usual, bringing a lady training to be a nurse practitioner. We chatted nonchalantly about Rowan and his chart. Everything looked good and healthy, no reason to worry. As they were readying to leave the room, I blurted out that I had a question. I apologetically informed him that we were expecting again and that they were Mono-mono twins. We talked about that for a bit and after feeling comfortable enough to ask more questions I told him about our other complication. When they heard encephalocele, their faces dropped a bit. Even if you don’t know what it is, sometimes medical professionals can disect the Latin origins of the word and figure it out. Dr. W asked if I was sure. I confirmed it with the ultrasound picture I left in my purse from the day before. I relayed the prognosis. Occipital lobe. Too small to see inside the cyst looking for brain matter. Possibility of occlusion. Small chances of survival. Almost total chance of some form of disability.

He and the nurse practitioner listened intently. I saw sympathy and understanding in their faces. I cried. I tried not to but I wasn’t superwoman. I was emotional. Dr. W assured me that things are not always what they seem. He explained that doctors tend to prepare you for the worst and hopefully you don’t have to deal with that. The nurse practitioner shared with me her son’s story.

A heartwarming story about how her placenta pulled away and her water broke. Blood everywhere. The ER told her to go home because the baby had died. She came back in the next day because her OB wanted to check her. Baby boy was alive and healthy. He was delivered immediately and started to do well. Shortly after they told her he had a serious condition (I can’t recall what it was) and to prepare for his death. She made funeral plans and tried to accept the fact that her baby wouldn’t live past 9 months. The nurse practitioner’s mother came over every opportunity she had and prayed over that baby. She rocked and loved him and prayed with all her heart. Didn’t matter that the nurse practitioner didn’t believe in God or accept Jesus as her Savior, grandma still prayed for that baby. He is now 17 years old and graduating high school this year with no health issues. She showed me a picture of a beautiful young man going to prom with his date. I looked up and her and she told me she accepted Christ shortly after. He had saved her baby boy and she would never doubt that.

I felt slapped. I smiled and told her what a blessing it was to hear that but inside I was shocked. This woman had NO faith and she still trusted God with her life and her son’s life and became a Christian.

I was ALREADY a self proclaimed Christian. I should have had that kind of faith. I should have built her up instead of her building me up.

Dr. W smiled kindly and said his advice would be to wait till birth. He said to do whatever I could to get those babies to their goal gestation and wait till they were born. He said whatever your baby needs after his surgery he would facilitate that so I could continue going to a local pediatrician instead of 2 hours away. He hadn’t dealt specifically with an encephalocele but he had dealt with similar afflictions and assured me that they would do whatever we needed.

Then he shocked me. He asked to pray with me over my children. Tears filled my eyes again and I simply nodded.

We prayed and he asked me if he could put me on his church’s prayer list. I wiped my eyes and told him absolutely. He gave me a hug and so did the nurse practitioner. I watched them leave and collected myself. I hugged my son tightly and promised him a small milkshake for being so good for the doctor.

I got home and considered the updates on our situation. Dr W. was right. Who was I to worry about the future that hadn’t happened yet. If our baby was meant to survive, then he would. I firmly rejected every thought of abortion from there on out.

Dark Days

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It’s probably pretty vain of me to post a picture of myself but I can promise you this picture represents a stage of my life I never want to do over again.

This was taken as I left my house to go to our first appointment with our Maternal Fetal Specialist Dr O. I had no idea what she would say. I knew there was a complication with how the twins were developing. I was 12 weeks along. I told my husband to stay home. She wasn’t going to shock me today, I reassured him that I was a big girl and could handle whatever she threw my way. I desperately wished I had encouraged him to go. The poor guy had no idea what I was driving into.

I had a sonogram the day before on a very advanced machine. It was supposed to be the best of the best and I had tons of pictures of the babies that the tech printed out for me to take home. My OB Dr. C decided to have a consult with Dr. O because her machine was very detailed and that would tell us exactly what was happening.

I remember the clinic room I sat in after arriving a few minutes early to my appointment. It faced the parking lot and I was enjoying myself just people watching. I sort of hoped to see a mom with twins walking through the parking lot to the massive doctor clinic. I had a good view and I remember seeing a huge Suburban trying to find a place to park. Ugh, I didn’t want to have to drive that thing around Wichita. Three kids meant a good size car and it was likely my husband would talk me into a Suburban. Mini vans don’t go down dirt roads he lectured me. Pickups aren’t big enough he said. My Explorer would be too small when the boys started to grow. Whatever, what does he know I thought? HE didn’t have to drive the thing everywhere.

Dr. O came in with her nurse practitioner after the nurse had taken my vitals and asked the usual questions. Dr. O smiled kindly at me and I joked about having a good people watching view from up here. She walked past the little scooter stool that most doctors sit on and settled herself in the chair next to me. The conversation started light. Typical questions about what I knew and what I didn’t understand yet.

“Did you come by yourself today?” Dr. O asked cautiously.

“Yes, I told my husband to stay home and I would bring any news back.” I said just as cautiously.

“Have they talked to you about Baby B?” She watched my reaction intensely.

“No…I know they have complications with the sac they are in.” I scrambled for any bit that would indicate what she meant. I could feel my heart starting to pound louder.

“Well, we have confirmed there is no membrane between the babies. They are mono-chrionic and mono-amniotic. The risks of cord entanglement are very high.” She went on to explain their umbilical cords are all jumbled together. The survival rate is 50% in this type of twins. The high risk complications for mono mono twins include cord entanglement, cord compression, twin-to-twin transfusion, and premature birth. As the babies really start to move their cords become twisted together and knotted in hundreds of different ways. This means that if one of them pulls to hard it will tighten their knots and cut off their blood supply. This would immediately kill them. I would have no indication that my babies were dying inside me. Even if only one of their cords was knotted the other would likely not make it after receiving twice the normal amount of blood resulting in brain damage and eventual death. Twin-to-twin transfusion means that one baby can get too much blood supply and one can’t get enough, if left unchecked can kill one baby and permanently disable or kill the other. Our babies were guaranteed a stay in the NICU as they recommended hospitalization from viability until birth at 32 weeks via c section.

“Viability? Like when they can live after birth by themselves?” My hand flew to my stomach in fear.

“Yes, if they make it to the age they can be born and still live, you will be admitted to the hospital for 8 weeks until we can deliver safely. That age is 24 weeks approximately.” Dr. O stopped for a second to let this sink in. I had an idea this would happen after finding out that we were having twins and something looked complicated. That meant I would stay by myself two hours away from home for 8 weeks. Two months away from my son, my husband, our new home and the rest of my friends and family sounded like such a long time. Who was I kidding? It WAS a long time. Two months??

“The babies probably will stay in the NICU for quite a while, as long as their due date.” Dr. O explained. After doing the math in my jumbled brain I realized that meant 4 months away from home. 2 months for me to be in the hospital and 2 months for the babies to be in the hospital. No, that wasn’t possible. I couldn’t handle that? Thats such a long time. I began to feel sick and it wasn’t just the morning sickness. I held it together. I could do that. Besides I had three months to get ready.

“They found something else on the sonogram though.” Dr. O started again. My heart dropped into my stomach. It was the tone. The tone that doctors use when they have bad news.It struck me like a baseball bat. Whatever she would say next was going to hurt.

“I’ll just get to the point because I don’t know how else to do this. Yesterday they noticed something on the back of Baby B’s head.” She handed me a printout of Center for Disease Control with a funny looking baby’s head on it. “It’s called an encephalocele.”She explained that Baby B’s is on the occipital lobe of his head. There is hole in his skull next to his brain and a cyst has developed over that hole. It is roughly the same size as his head. Generally, this means that his brain tissue will go through that hole and migrate into the encephalocele and he will develop particular disabilities with that tissue affected. The occipital lobe controls vision mostly. 20% of babies with this condition will make it to birth and of those only 20% will live past birth to have surgery.

I lost it. The floodgates opened and I tried to hold it in. It didn’t work. I sobbed for I don’t know how long. Dr. O handed me a tissue and hugged me. She comforted me best as she could. But I totally and completely sobbed my eyes out and my makeup off. My sweet babies weren’t going to live. There was no way! Even if the mono mono thing didn’t kill them the encephalocele would kill one of them and eventually affect the other. I am a believer in cold hard facts and the facts didn’t lie. These 12 week old babies inside me were doomed. They couldn’t come out of that.

“There is an option if we find that brain tissue is in the encephalocele. We can do an occlusion. They will go in during the early pregnancy and cut off Baby B’s cord. He will eventually die and it would save you the pain of carrying him further or watching him die at birth.You would have one healthy baby and a normal pregnancy after that.” My head shot up. Abortion? Is that what she meant? Kill one baby to save the other? Would I watch my baby die in a week or watch him die at birth if he even made it that far?

Now, Dr. O is obligated to give a mother options when this type of severe birth defect occurs. The reality of a disabled child is difficult but watching your baby die shortly after birth is painful or even if they die in the womb. The thought that any parent would have to watch their child die at birth is a soul-crushing one.

Judge me all you want, but I’m a pragmatic person. I like things I can control. I like order and plans and lists. Predictable is the name of the game for me. I organize things for fun. This is who I am. I fully considered killing one of my babies to save the other and save myself from the pain of losing one or both babies. There I said it. I’m serious. Judge me. Go ahead. I deserve every bit of it. The reality of this situation is that unless you have been in this situation you could never know how you would react. You DO NOT KNOW.

My tears stopped and I felt my body go numb. The kind of numb that Novacaine does to your mouth. The kind of numb that nerve damage causes. The kind where you can’t feel anything. Someone could have walked in that room and shot me. I wouldn’t have cared. Still to this day I can’t perfectly describe it. My soul left my body and I went through the rest of the appointment. I asked my questions. Saw the evidence on the sonograms that my baby had a serious birth defect. I satisfied my need to know everything.

It was caused by an amniotic band. The twins sucked so much folic acid out of my body that a piece of my uterus broke off the lining and stuck to my child’s head. It created a small hole in his cranium and a cyst on the outside. Usually, when an amniotic band attaches to something it has the capacity to completely cut off the blood flow to the affected area. Think about that. Whatever those fibrous strings of uterus stick to it can permanently damage. Lands on a finger, no more finger. Lands on a leg, no more leg. Lands on a specific spot on the head, nothing develops there. What were the chances my precious child would escape permanent damage?

I took their phamplets and sono pictures. I walked numbly out to my car in the parking lot. I turned on the car and started blasting my air conditioner. I need to feel something that would calm me and bring me back to reality. I had to drive and be able to focus on the task at hand. An incoming call flashed GAVIN and I sighed. Wanting to let it go to voicemail, I answered it.

“Well, whats the news?” Gavin asked as innocently as he could.

I held it in. Before I broke down again I explained sufficiently the situation. Then I told him about the occlusion. We would lose one of our precious babies for sure if we took that route.

“What kind of an option is that? Why would we do that?” Gavin wasn’t having any of it.

“Honey, this sort of disability most likely requires frequent doctor visits and a special school. We’ve got to be able to care for our child and if that means moving, then its what we have to do.”

“We will cross that bridge when we come to it. I’m so sorry you had to hear this by yourself. Do you need someone to drive you home?” Gavin knew how I could get worked up and this was the worst kind of mood for me to drive in.

“You know, I’m going to the bookstore, maybe the library. I’ve got to do some research on this. I won’t drive until I can handle it. Don’t worry.” I had sobbed my eyes out all before 11:00 am. There wasn’t much emotion left in me.

I’m nothing if not a hider. I’m fine. I’ll be ok. I don’t need anyone to fuss over me or come to my rescue. I don’t need rescued, I told myself. Least of all disrupt someone else’s day with my bad news and inability to handle myself like a grown up.

We hung up and I put my car in gear. I found my favorite bookstore. The one with the big cushy chairs and adjacent coffee bar. I could see coffee would be a very bad idea at this point so I opted for tea. I walked among aisles and aisles of books, searching for anything that would help me. I found two medical reference books. Both were the size of a shoebox and had two sentences describing an “encephalocele”. The words “Birth Defect” kept flashing in front of me. Its all I could see, a giant lumpy looking cyst attached to my unborn baby’s head. He wouldn’t look normal. In some cases even cosmetic surgery can’t correct the malformation, and he would have that stigma for his lifetime. I really could care less how his head looked if he could just not be blind. I begged God for that the most. Please let him see Your creation. Don’t shut him out of the beauty the world can behold. Don’t tell me that my baby will never see how much he looks like his brother. Don’t let my baby miss out on Kansas sunsets, newborn calves, first sprouts of corn, blue skies, and most of all seeing his accomplishments. What good are accomplishments when you can’t enjoy them?

I snapped those books shut. Obviously, this wasn’t the place to find information. I shoved the book back and practically ran out of the store, trashing my tea on the way. Past the books that help parents deal with the diagnosis of their children, past self help books, past action or mystery novels that would take my mind off my situation. I needed to go home. I needed to hold my 18 month old son and feel normal for five minutes without this crushing weight on my chest.

The drive home was the worst. Thankfully, I had run out of tears and was simply driving with moist eyes and a numb body.

I clicked my driving playlist. Some random music that I could sing along to and relax to. A couple songs came on that have always spoken to my soul.

“Forever” by Kari Jobe

“Oceans” by Hillsong United

“Lord, I Need You” by Matt Maher

I wasn’t feeling very close to God at these particular moments. He felt a million miles away. But every one of these songs spoke to me in a way I hadn’t been ministered to. I felt their convictions deep in my soul and my heart ached from Him reaching out to hold it. He held my heart in His hand and I was terrified He was going to crush it. I should have known better but I ignored it. I was feeling betrayed and wasn’t done pitying my situation yet. He offered peace and I counter offered control. Give me control and fix my baby, God. I’ll follow you then. Tell me at that next appointment that I don’t have to worry anymore.

He declined my offer. Thats not what He wanted from me.

I cried to my mom everything that happened. She held me and we cried together. At this point it was a miracle there were tears left in my body. My spirit was so totally broken. I knew 12 weeks was technically past the largest percentage of miscarriages, but there was nothing to keep my babies alive. One wrong move and they would die, slowly at first, stripping them of their blood supply and damaging their organs beyond repair, then they would pass away. I would have no idea why or when. The only indicator was movement and at this stage of pregnancy I wasn’t feeling any, I had nothing to reassure me.

On top of that one of my babies wouldn’t likely live. I had to let them know my final decision about abortion quickly. I told them in the office that it wasn’t an option for me, but they told me I had four weeks to think it over and see what the sonogram showed. If there was brain matter there was a certainty of some sort of permanent disability, most likely vision related because of the location of the defect.

I went over and over it out loud with my mom. How could this have happened?  What did I do wrong during this pregnancy? Why would God ask me to suffer this? Hadn’t I been studying my Bible lately? I had a wonderful support group of fellow Christian moms who met weekly to discuss God oriented parenting. They gave me strength and courage to raise my son right. What else was He asking for in my life?

Gavin came home and we discussed it at length. He was just as devastated as I was. I was simply thinking of my tiny baby not being able to function. He was thinking of his child never knowing the joys of life. We agreed that under no circumstances would we consider abortion. We weren’t sure of what was ahead but that was not an option. God had given us this baby and we would see it through until He called our sweet baby home.

We prayed for a good hour about what would be required from us. I remember crying during most of that. We prayed most of all that God’s will be the path we chose. We knew He asked something difficult and wanted His all encompassing peace to fill our lives. I don’t know how, but I fell asleep that night. The most restful sleep I had felt in a while.

 

Well You ARE Having Twins…

There’s a process that all my pregnancies go through. I take a test, its positive. YAY! I called my obstetrician and tell them the good news. The receptionist congratulates you and asked standard questions to make sure I wasn’t having immediate issues and then she tried ascertain how far along I was. I excitedly forget all this information while on the phone and hurriedly scrambled to answer the questions that helped them to schedule me in a good spot. No, I wasn’t having any issues. I didn’t exactly know the due date but I had an estimation. Yes April the 18th was perfect. Afternoon, please. Yes that would work. Thank you. Yes, we were very excited. Bye-bye.

Beep.

After the big day arrived we were called back. My wonderful doctor, who delivered my son two years ago smiled reassuringly. Dr. C asked how I was feeling. I was ok. Simply tired most days and having a little trouble keeping up with the demands of a toddler and a renovation. That was perfectly normal. Make sure to drink plenty of water and try not to wear myself out. The sonogram revealed we weren’t as far along as we thought. Only 6 weeks. Baby looks healthy just too little to hear a heartbeat. Still just a lump with a yolk sac. Come back in two weeks. We’ll know more then.

Everything’s healthy. Feeling sicker as the weeks passed. So very tired. Lots of uncomfortable bloating and morning sickness that lasted all day. Dr. C offered a morning sickness medication specifically for first trimester. The wonder drug. It was time to see if we could hear the babies heartbeat. Dr C pulled out his doppler with the little wand and applied some gel to my belly. Searched around a bit and found a heartbeat. Couldn’t hear it  clearly, which wasn’t unusual this early on. Dr C looked at me and asked if I wanted a sonogram. As a mom, its always exciting to see your baby. No matter what. When I hear the word sonogram I want to savor every second of seeing that little bean. I said a silent prayer as they pulled the portable sonogram into the small clinic room. Just to make myself feel better in case there was something wrong. He set up the sono and I asked Gavin to video it on his phone. I always regretted not having the video to send to my mom and mother in law. I wasn’t going to miss this one. I started babbling. About nothing really, just that my best friend from high school who was four days younger than me was having twins. Twins! Good heavens, that scared me. I was glad we knew already it wasn’t twins. I didn’t think I could handle two babies at once! Dr C moved the wand into place and I didn’t think much of it when he stopped talking. I was talking enough for the both of us. More excited than anything. Gavin stood quietly videoing the screen and the nurse looked at Dr C nervously.

“Well, you ARE having twins.” Dr C said in the most nonchalant tone I had ever heard.

“WHAT? You’re kidding aren’t you. You’re just joking.” I blurted.

Dr C just gave me a look. This man delivered ME 25 years ago. He has delivered over 15,000 babies in his 40 years as a OB in Wichita. And I asked this very sweet and serious doctor if he was joking.

“Well, no I am not joking. See the three lumps there? That is two babies with active heartbeats and their placenta.” Dr C pointed to the machine.

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“I knew it. I thought I saw that too but I wasn’t sure.” Gavin supported everything the doctor just said with his opinion. He had already shut down the phone and video, declaring moments ago that it was enough video. I should thank him for not recording the moment the doctor used the T-word. I’m not sure I wanted to remember that moment. My thoughts immediately ran to the amount of diapers twins would require. Of all things, diapers. Oh and the fact that we bought a THREE bedroom home. Not a four.

“Well are you sure?” I asked again in disbelief.

“I’m pretty sure but I could be wrong. I would say about 80% of the time I am wrong. However, we will send you to our more advanced sonographer and her more detailed machine. You’ll know whether or not you are having twins by the end of the visit.” He smiled reassuringly again at me.

“They both look very healthy” He stepped out of the room and his nurse followed, offering their congratulations.

“Twins, Gavin! I mean what the heck do we do with two of them! Maybe he’s wrong.” I began talking myself out of it.

“It’ll be fine either way, Hannah. Don’t stress until we go to the big sonogram.” Gavin laid back in his comfy doctor chair while I pulled my maternity jeans back on. I was officially out of my regular clothes at 8 weeks. That bloaty baby bump wasn’t going down anytime soon.

We followed the nurse back out to the waiting room and she gave me a paper to give to the sonogram tech. I started looking around in the waiting room at the many baby pictures on the walls. Twins spotted the walls here and there. Sigh, two of them. I was not the happiest person in that waiting room for sure. Call it pregnancy hormones but I was sniffling a bit.  How was I supposed to handle this? I could barely handle one toddler. THREE kids was not the plan. We were always planning on two. Hence the three bedroom house. We weren’t supposed to need a fourth bedroom. That wasn’t in the 10 year plan. I didn’t have three hands for kids to hold when we crossed the street. I had two dang it! The nerves started to grate on me and the sonogram tech called us back.

Fast forward to the next big black screen that confirmed Dr C knew what he was talking about. Twins for sure. Identical ones. They shared a placenta. They were definitely identical and identicals are always the same sex. We were having two boys or two girls. The sonogram tech left the room to print out some reports. I pulled my maternity jeans back up once again.

“Gavin, twins.”

“Honey, no matter how many times you say it, there will still be two of them.” Gavin calmly smirked at me.

“Yea but babe, TWINS!” My volume was increasing at an alarming rate. Calm was not in my vocabulary at this point.

I’m not sure how many things ran through my mind at that point but Gavin just gave me a hug and reminded me that God was in charge. Not me. And it was exactly what I needed. I didn’t know how much I would need that reminder over the next month.

The Faintest Line Ever

The Faintest Line Ever

I distinctly remember the day I found out we were expecting baby #2. I found the cutest flowered top. Black with baby blue flowers, which on reflection is the biggest foreshadowing I could have recognized.

Sunday afternoons are for doing nothing, in my opinion. I am not a overachiever and after wrangling a toddler into his nice jeans and shirt for church and reminding my husband every two minutes that we are late for Sunday School at our local church, its a given in our family that I deserved an afternoon of rest. This is a typical example of my Sunday though, I love seeing all the happy faces of parents who are just as tired as I am but glad to have made it to church to hear Pastor Steve’s encouraging message. Its one hour a week where I can drop my child off without any guilt in the church nursery and make my way to a seat with the rest of my clan and shake hands of people who are just as worn out as I am but just as happy to be around each other. I thrive on that energy some days. Sundays are the days for being thankful and reflection. Not days in which you find out important news. A monday? Fine, tell me then. Wednesday? Yeah, that works. But not my Sundays. Its the day of REST!

Anyway, back to my cute shirt. I opened my mail order package and pulled out my latest online find. It fell smoothly in waves down my arms and to my pajama pants (because I can’t relax in jeans on a Sunday, its illegal). Except for my lower stomach, it looked perfect. My eyes settled on the rounded bump that indicated I ate too much. Ugh seriously? Sucking it in was not going to make that go away. The wheels started to turn as I switched back to a pajama top. Hmm, surely not. My oldest son ran into the room and started to fling dirty laundry out of the basket in order to play his favorite game of throwing things into a laundry basket. I watched him fling the new top into the dirty pile. Nah, there is no way. But, surely it wouldn’t hurt to check. Five minutes later the strip on the test was the faintest second line I had ever seen. A SECOND LINE? I immediately dismissed the idea. It was too faint to really see. But wait, didn’t my friend have a very faint line with her first baby? Oh she did. OH NO. Thats not right surely. My son came running into the bathroom, suddenly aware that I had left him alone (also illegal). I scooped him up and stared at the test on the bathroom counter (Yes, I washed my hands. No woman can pee on a pregnancy test and not their hand). And cry/laughed for a good 30 minutes. The weirdest noise you ever heard. Giggles one second and high pitched sobbing the next second. Its something hormones can only generate. After my dogs joined me in the bathroom as I sat perched on the edge of the bathtub, I realized it was time to move. Get out of the house and do something. I dressed at the speed of lightening, leaving the button unbuttoned on my jeans (hey I was allowed to now that I was pregnant), and hurriedly piled my son in the carseat. It was too dangerous to stay at home by myself where thoughts reigned supreme. So much for a restful afternoon. I needed backup.

I hunted down my husband at the new house we just started to remodel. Literally, demo was only just finished. He was measuring the open lot next to our house for cattle pens. I pulled up, determined not to tell him quite yet. That lasted two minutes. After about 30 seconds of sitting in the truck talking about his initial blueprint of the pens, I pulled out the test and handed it to him. I was too shocked to think of a clever way to tell him. He looked at the test and looked me in the eye with surprise on his face.

“Why did you hand me a negative pregnancy test?” He innocently asked me, genuinely confused as to why I would do such a thing.

I totally could have smacked his forehead and told him he needed a V8.

“Honey, a faint line is still a positive.” I explained slowly so I wouldn’t bust at his lack of knowledge of pregnancy tests.

“Yea maybe, but theres no line.” He held it up to the sun and reexamined it.

“Nothing there.” He announced, ready to reassure me that it was all in my head.

“Take another one tomorrow and we”ll find out for sure. Get the digital kind that says yes or no. Its just easier.”

“I don’t have one here so I’d have to go to town. Ill do it later.”

“I’ll get you one tonight.” We turned to the subject of cattle and never looked back. He dropped me off at the house and I drove home to fix dinner and put our son to bed. 11:30 came around and I ignored the niggling question in my mind. My husband prances in and plops a box of Clearblue Digital Pregnancy Tests on the bed I was comfortably settled in.

“Take one tomorrow and let me know.” He smiled and went to shower and catch some leftover dinner. I stared at the box, afraid to touch it and said a prayer. A prayer that if I was pregnant, God would guide me. A prayer that if I wasn’t, I wouldn’t be too disappointed. The idea of another baby began to warm my heart already.

Next morning, I stumbled into the bathroom and remembered the test. I scuttled back to our room and snatched the box off the floor where I left it the night before, as if it might burn me the second I touched it.

A couple minutes later the test said exactly what I felt in my heart. Baby number two was cooking. My husband took the news well, better than I thought he would. Remodeling a new house and moving with a toddler was hard enough. He laughed and said he was excited. We estimated the due date to be about two years from our first sons birthdate. What a good age difference we both said. He said he would pray for a healthy baby and I said I would too.

“Don’t worry honey, I’m excited. I think we”ll be just fine. I”ll just give up my office when the little one gets here. They can have their own room and your car is plenty big enough for two little kids. Plus everything went well with Rowan. Theres no reason things won’t go just as well as the first time.” He gave me the sweetest little pep talk as I started to freak out over the phone.

Little did we know how different this pregnancy would be from our first. img_2048