The many faces of Tomas

God and Tomas, epilogue

There is so much more to tell, so many more ways God has walked and is walking through this journey with us, but I wanted this to be the story of the beginning; of how we came to be where we are. Each of us was stretched, and shaped, and reformed individually, and yet our family is also something different than what is was before, something better. This experience, and here I am speaking of the medical complications that abound - not the DS, has been so grueling and so exhausting and so not over with that finding something positive to say should be very difficult. It should be, but it isn't. Tomas is exactly what we never knew we wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme. It was not the end of the world - it was the beginning of one.

God and Tomas, part nine

On the way out of OR I got to swing by (in my bed) NICU and really take a look at him for the first time. He was so small. I touched his toes and just looked and looked, as much as I could in a drive by viewing. He had a tube down his throat to drain out what was in his stomach because it had nowhere to go.
Since it was past midnight when I was brought to my room, and my friend was beat, she decided to stay with me and help me out. I am so glad she did, I can't imagine being there by myself that night. The nurses came in and did their thing, and by 8am I was going to get my rear-end to NICU. I got out of bed and tried to dress and clean and all the other things you need to do after a c-section; and let's just say my friend and I are bonded for life and I can never disown her because she knows too much. And thank God for narcotics so I don't have to remember any of it vividly - just a vague recollection.
She wheeled me down and I had my initiation into NICU scrubbing. We went into his room, and after we were settled the nurse put him in my arms. I got to hold him for the first time, and the wires and tubes just disappeared. They melted into nothingness, away from the space that was just him and me. What a glorious moment!
After a bit we went back to my room and my friend got me settled and then headed home. My husband had caught a flight out of CA that morning but still wouldn't be there until well into the afternoon. Around this time the phone calls started rolling in from the NICU nurses and doctors about all the diagnosis they were finding. What we thought was a healthy heart based on pre-natal screening actually had 4 holes in it, but they were small and expected to close on their own. Later that morning, another call came from the surgeon, he had convinced the hospital and some nurses to operate on Sunday. That was the next morning. I had someone wheel me to NICU and asked for a priest. Within an hour Father Scott from a nearby parish was there, and Tomas was baptized. Just him and me and a tiny syringe with a few drops of water. It was an emergency baptism - because he might not make it through the surgery.
A little later two other friends came to visit, we were on our way to NICU to see the baby. The elevator doors opened and who steps out - my husband! My friends graciously bowed out, allowing my husband to go in and meet Tomas in a private moment. We went in and looked him over. Tomas was not a magazine cover newborn, and it had nothing to do with DS. Oh, he was cute all right, but just had a few quirky things going on. For starters, he had no eyebrows - not a hair in sight. Then his cranial plates were overlapping. When I first saw this I thought it was a DS thing, but the nurses assured me it was a baby thing, and that they would move and shift and eventually fall into place. At the time my husband came in they were overlapping right over the center part of his head and he looked like a little Klingon baby, only with no eyebrows! I could tell he was nervous that this was all permanent stuff so I did my best to reassure him. He didn't want to hold him as there were too many wires and he was too afraid. We just sat there for a long time and watched, and eventually headed up to my room.
That evening was spent logistically planning for the surgery, and who would be where. He left me in the morning to go pick up the girls and his mom (who was staying with them at our house). They all met me in the waiting room for post-op, and then he and I walked with Tomas' isolette back to pre-op to say goodbye. That moment is so very, very hard. We've done it five times now, and it is never easy, but that first time was a huge test for us. How much did we mean it when we said we would put our faith in the Lord, and let go?
One huge blessing was that the post-op room was empty except for us. It was Sunday and no other surgeries were scheduled that day. We prayed and waited and entertained the girls. It was so strange, I was still in a wheelchair and on an epidural pump, I was only 32 hours post-op myself. Adrenaline is a gift from God.
The surgeon came out and said everything went very well, and that he had placed the g-tube "just in case" as we had discussed. What a huge Godsend that turned out to be!
A few days later, and I was in NICU alone, and he was not doing well. He was under jaundice lights, and completely swollen from the surgery. Not breathing well, and certainly not eating. In the far back corner of our shared room was an older baby whose mother was there every time I came to see Tomas. The baby was always on his stomach and had tons of toys and blankets under his crib. I didn't ever pay too much attention, and the hospital was pretty strict about its privacy policy. But I had learned about the butterflies.
At each room's entrance were butterfly stickers with the baby's last names that were in the room. One day I was walking towards Tomas' room, which normally housed 4 babies, and noticed there were only 3 butterflies that day. When I got closer the front corner curtain had been drawn, and I knew. The sadness and darkness just emanated from behind that curtain. I still couldn't touch Tomas but I moved my chair as close as I could to his isolette that day, and I hung my head for the family next to me.
A few days later the far back corner baby's father was there when I walked in. I had never seen him before, just his mother, and quite frankly he was scary. He looked like a gang member. His world was as far from mine as you could possibly imagine. Pants around his hips, gold chains, tattoos, funky hair - you name it, and he had it. I just moved to my small corner of the world and sat next to my baby. A little later I heard him talking to his son's nurse, "but can't they just do a lung transplant?" The nurse muttered something back which amounted to there was nothing more to be done. And my heart broke as that wall of fear came crumbling down around it. This man was begging for his son's life. It was the first wall that God used Tomas to tear down for me. About a week later and that baby's butterfly was gone and his curtain was closed, and I hung my head again. this time for the gang member father who was just like me.

God and Tomas, part eight

Some days after the first week in January my husband told me that the division he was now working for was having its annual meeting out in CA the following week. Did I think he should go? How was I supposed to answer that? He would be home by the 19th, and the c-section wasn't until the 28th. Well, I'm the go-for-it kind of gal so I said sure, go ahead. He then demanded to know if I was going to have the baby while he was gone. He was serious, he wanted me to tell him when the baby was coming. We went back and forth for a while, and I left it with Murphy's law would reign. If he left I would have the baby, and if he stayed I would not. He finally decided to chance it and left the early morning of the 16th.
The late morning of the 16th I had a regular OB appointment, but was also having those pesky contractions again. She checked me and I was still closed tight but told me to go home and take two of the muscle relaxers the hospital docs had given to me a while back to relax my uterus. If they didn't stop I needed to go to Orlando and get checked out.
I had my girls with me but as we were leaving a friend called to check on me, when I told her what was going on she told me to drop the girls at her house and go home and try to sleep a bit, that she would bring them home later. So I did. I went home took two pills and laid down. That was around 10am. At noon I woke in sharp pain from contractions, but they felt weird, just different. Even though I had two c-sections for the girls I labored with the first so I knew what they should feel like, and these hurt, but in a strange way. So I called another friend. A few words about her, we met when our girls were on the same soccer team. She was and is a pediatric nurse. I remember thinking, "hmmm, she would be a good friend to have". Well, that was 5 years before that phone call and she was a great friend for many, many reasons. She had agreed to be my backup "doula" in case anything happened while my husband was away. Poor girl.
I called her at noon and told her that I felt funny and I thought I should go get checked out in Orlando. She had her daughter with her and was babysitting her nephew as well. She called a friend to see if she could take her daughter to an afternoon activity, and she called her mother to see if she could drive up and watch her nephew until his mom came to pick him up. Well, friend said yes, and mother said yes, so my friend said yes she could take me.
A little while later I was driving to her house. I tried to time it as best I could. Contractions were about 10 minutes apart at that time and she lived 20 minutes away. So I waited until one set was over and then left, hoping to make it there with only one set while driving. Well, I had only one set, but it was on the bridge that took me off the island. I remember being on the stupid bridge and doing those stupid breathing exercises and please, oh, please just let me not fall into the river. Luckily it only lasted about a minute and then it was clear sailing the rest of the way. I got to her house and she was finishing up the last minute instructions with all parties involved, and then we were on our way.
I got to the hospital and got all strapped in and monitored and the trauma doctor came in and checked me, and said everything looked good. Just watch me for a little bit longer, but then I could go home. Phew, close call. I hadn't even called my husband because we had so many incidents like this that it didn't seem worth it. My friend went to get a snack and when she got back I begged her for a cookie. Up until then I couldn't eat anything, but since the doc had just said I could go, she gave me one. Well, we should have known. Really, two grown women couldn't figure out that if you give a pregnant lady a cookie while she is hooked up to fetal monitors at the hospital that even though the doctor just said she could go home, it was never going to happen?
A few minutes after "the cookie" the  fetal heart rate monitor began to nosedive during a contraction. Another word about my friend - she was a labor and delivery nurse before she was a pediatric nurse. Did I forget to mention that? Nope, just saved it for the good part. She jumped up from her chair and began flipping me like a pancake from side to side, and mashing my belly to make the baby's heart rate climb. A few minutes later and it happened again, and then she happened again, and then the hospital nurse came in. Not until after two heartrate drops did the staff come in. The nurse put me on oxygen and then said, "The chances of you going home tonight without delivering a baby just went to very slim". Excuse me? I think that was around 8pm or so. Frantic phone calls were made, her husband, my friend who had my girls, and my husband. My friend with my girls was going to bring them over to my neighbors house and they would spend the night there, another neighbor had a key to my house and let them all in to get some things for overnight. Her husband had already picked up their daughter and fed her some atrocious dinner, but they would be fine nonetheless.
My poor, poor husband. Did I not tell him? He called a bunch of places but to get from CA to FL is impossible in less than 6 hours. It takes almost that just for the flight. So I told him to let it go, get on a flight the next morning, as there was no way he would make the birth anyhow, and just get there when he could. Next the nurse came back in and told us the docs were going to do the c-section that night as it was too risky to the baby to go any further. Then she asked me when was the last time I had anything to eat. Well that did it, a highly tense situation degenerated into fits of hysteria over that damned cookie. Here I was, about to deliver a Down syndrome baby with a major birth defect, my husband was clear across the country, the baby's heartrate dropped with every few contractions, and I couldn't stop laughing.  I'm sure they taped a sign "Raving Lunatic" outside my door.
We got moved upstairs and waited for an OR room to become available. The nurses came in and out and long enough went by that the cookie was no longer an issue for anesthesia. I got wheeled down to OR and when they opened to doors and brought me in, it was so crowded! There were so many people there! The anesthesiologist, the surgeon and his assistant, the neonatologist, and at least 4 or 5 nurses. That was why the doctors pushed for the amnio - they were ready for Tomas. My friend sat up by my head and comforted me. As the surgical team came closer, she looked over the curtain and said, "Dr. So-and-So?". Turns out she knew him, she was one of his nurses before she left the hospital, and now he was at the women and children's hospital teaching something (I can't remember), they chit chatted a tiny bit (talk about surreal) and then everyone got down to business. But my friend leaned in and whispered that I was in good hands, and that felt nice.
This was it, all those months, and here we were. For so long I had tried to keep him inside. I knew it couldn't stay that way much longer, but he was safe as long as he was in there. Not anymore, with the heartrate drops it was now more dangerous on the inside than it was on the outside. A few tugs and a bit of pressure and at 11pm exactly he was born. No cries at first, and then just some pathetic kitten sounds. The nurses worked on him and my friend went to take pictures. She came back to tell me his legs were bent up with his feet over his shoulders (like any good DS baby!), and that he was very cute. The neonatologist came to tell me that the baby did, in fact, have DS. I remember thinking I didn't know that was still unresolved. He told me he was stable but that they needed to get him to NICU quickly. The doctor brought him over and with genuine warmth placed him by my face for me to kiss him. He was so tiny, but his little small face was just perfect. There I was, loving him on the outside, just as I had prayed for.

God and Tomas, part seven

The next few weeks were still pretty rough, but mostly from a medical standpoint. I was at the doctor or hospital (for the NSTs) at least 3 times a week. Most of those visits took me down that winding drive to the bridge across the river. Every time I went a bird or birds flew with me. Never again in a triangle, but always they were with me. I remember knowing at the time who they were from and why they were there and I was so very, very grateful.
At the visits, half of the time someone didn't like what they saw and I had to go on to Orlando (the women and children's hosp - about an hour from home) to have a biophysical profile done on the baby. They would watch him on the ultrasound screen and see how many times he did this or that during an allotted time period. A few times he failed and I had to haul myself back there the next day for a repeat. And so it went, on and on, and over and over.
Life at home had reached a degree of stability, some parts were still a little shaky, like when we would try to imagine just how we were going to do this. We thought once the surgery was over and he was home, the largest part of our trouble would be raising a child with a disability. How naive we were! We also listed the house during this time, adding to everything the stress of keeping it uber-clean, and leaving whenever there was a showing. We made it through Christmas and had a good scare on New Year's Eve, but got sent home after a while. My c-section had been scheduled for Jan. 28th, the feast day of St. Tomas Aquinas, so Tomas would be our little boy's name.
Eventually, we all just came to roll along, and to take one day as it came. One day in early January, I was driving home from my doctor and realized there were no birds with me. None, I could not see any at all anywhere in the sky, much less along with me. I asked God what happened to my birds, I had enjoyed their company and the gift they brought with them. Just then I drove past a clearing in the mangroves and could see the river. It was flat, motionless, like glass. And every bird, quite possibly, on the island was resting on the surface. And I knew! I knew what it meant! I was at peace, I had found my resting place and I did not need the birds anymore. And that is exactly what God told me, and when God talks to you, there is no mistaking it for anything else. He said, "You don't need them anymore."

God and Tomas, part six

The next morning another girlfriend came to pick up the girls to take them on a field trip. I had a doctors appt. that morning. Actually, at that point I had a doctor's appt. every Friday and non-stress tests twice a week.
We stood on my front lawn and I told her I could see the hand of God in the life of the baby, but I had no idea what He had in store for my marriage. I told her I was sure my husband would get there. He is a good man, and a faithful man, and I knew he would come around, but it was that time in between that would be very painful. I thought it would take a while, perhaps as long as waiting until the baby was born and my husband could see, and hold, touch him. She told me to let God handle it, and to let it be what it would be. They drove off, and I left a few minutes later for the doctor.
I was crying as I drove. Not sobbing, but a this-is-going-to-be-hard-Lord-because-I-really-love-that-man cry. The road led south down through a narrow part of the island and after about six miles curved onto the bridge that brought you to the mainland. My car had a sunroof, and about 1 mile into the drive I noticed three birds flying overhead. In a triangle. They stayed the entire time, right up until I turned onto the bridge. I had been shored up, and carried on eagle's wings.
The next day my husband took our daughters and our two dogs to his parents house. The dogs were going to stay out on their property while we listed our house and had the baby. Too much to take care of all at once, and his parents had graciously let us leave the dogs on their farm until we were ready for them. The girls were going for a visit, and the three of them were coming back the next day. I was too far along and still having contractions all the time, so no travel for me. He kissed me goodbye, and it was cold and we both knew it. I watched them leave. And I wondered, how long before he comes back to me, and I didn't mean in a corporeal sense.
Late the next evening they all came home. We tucked the girls in and went to another part of the house. And there he was, full of all the right words, and all the right hopes, and all the right determination.  My marriage had been torn down and rebuilt in three days.  "Tear down this temple and I will rebuild it in three days."
It is a different marriage now. It was always a good one, but quite simply, this one can not be severed. We walk with confidence now through this journey, that no matter what, we will have each other. And as for Tomas, the most tender part of my husband's heart is reserved for him.

God and Tomas, part five

The call came from the geneticist on a Thursday afternoon while I was folding socks. She got right to the point and told me the amnio was positive. She asked if I was going to be ok, I told her I would be fine. She agreed with me, we had met before and she knew I meant it.  I would be fine.
 My husband was a different story. I have debated so much about whether to type this all out, but finally I decided that if I was going to tell the story of my son, than this was part of it.
That afternoon I was a wreck, because I had to tell him, and I knew he would grieve, and I knew it was all because of me wanting a third child. The guilt was incredible, so very, very heavy. I loved the baby and would not turn back the clock for anything, despite what was coming our way. I wanted this baby, not any other one, this little one that needed me more than any previous child. But I also love my husband dearly, and the thought of the pain I was causing him tore my soul in two. You see? I had chosen. My loyalty lay with my son, and I would not betray him, even to commiserate with my husband. I could not feel what he would feel and the thought of us being so very far apart on this devastated me.
I called a friend in tears, because I just dreaded telling him. And God was with me again. She told me the most amazing thing, she told me all the fear and apprehension I was feeling was from the devil, and I was letting him win. She told me God would continue to work wonders on our family and to keep my trust in Him. This was not a friend with whom I ever really discussed religion, not for any particular reason, it just wasn't part of our relationship. For her to snap me back to place like that was nothing short of the Holy Spirit working through her. I hung up, composed and ready to face what was coming.
My husband came home from a business trip that evening, and during our welcome home hug, I whispered "the baby does have DS". His shoulders collapsed in my arms, he stayed there a few seconds longer and then walked away. I went to make dinner, having chosen my path, and only prayed he would soon choose to walk it with me. That night was awful. He raged and he grieved, and I sat there. Completely in love with the little one inside me and therefor unable to share in anything he was going through. I felt our marriage bonds fraying, felt the ties that bind falling away. And I could do nothing to grab them and hold them tight, because I had chosen. I was on the other side, and I could only watch, and wait, and pray.

God and Tomas, part four

Another month rolled by as Thanksgiving approached. Much of my husband's family and us were renting condos up in Williamsburg for the holiday. I went to the maternal fetal doctor for my monthly check up and he went back and forth on whether to let me go. Finally, he decided the driving wouldn't be an issue but I wasn't allowed to do much walking. The extra fluid put me at risk for early delivery. Believe me, walking was the last thing I wanted to do. I was huge, and I mean huge. We decided it was time to tell the family about the birth defect and the DS risk, since I would be mostly hanging out at the condo while everyone else was sightseeing. About a week before we left we told everyone. There was much lamentation and crying on their part, mostly about the DS, which some of them saw as a lifelong burden we would bear. I just tried to be patient and let them come around. Also. we decided to tell the girls, even though we did not know for sure if the baby had DS. But we thought they should know he might, and also we needed to tell them about the surgery. We had met with the surgeon and he told us to expect a 4-6 week NICU stay, possibly longer if the baby did have DS.
So I sat on the sofa one day, with my then eight and six year olds, and tried to explain the surgery and what Down syndrome was and how it would change what the baby would look like, and how it might make things harder for him to learn and do. They took it all in, and then the eight year old asked, "Mommy, just one thing - is he going to want to play hide and go seek?" That's it, all boiled down, without any grown up baggage - will he find joy in being alive. Will simply being be enough to thrill him? Yes, Virginia, there is a Santa Claus.
We went to Williamsburg and had a great time. It was freezing, even for them, that November. I sat on benches and in visitor centers and we all still had a great time. Occaisonally, I would walk around a little with them, and once I even stayed behind at the condo and let all the rest go have fun without me. That was my initiation into the frustrating labrynth of medical care and insurance. The surgeon did not take our insurance and I was in a scramble to find one who did and had rights at the children's hospital, otherwise I would be at one hospital recovering from a c-section (2 previous - so no choice there) and the baby would be at another recovering from the surgery. I spent about 6 hours that day on the sofa and on the phone and in the end did find a surgeon who could operate at the women and children's hospital.
Shortly after arriving home, I began having contractions. Real ones, painful ones. I was only 30 weeks pregnant. I went to the doctor who sent me to the hospital who monitored me and stopped the contractions. This was the beginning of a very repetative pattern over the next few weeks. All the doctors wanted me to get to 36 weeks, and they also began to lobby very hard for an amnio. They wanted to know what they were dealing with and how to best prepare. So a few weeks later I went in. I had never had one before and a dear friend went with me (husband traveling again) to hold my hand. Funny thing is God had prepped me for it and I didn't even know it. And boy, oh boy, are God's ways not our ways:
Before we left for Virginia, I went in for an endocrinology check up for my thyroid. I had a goiter and a hyperactive thyroid in my twenties, had a radiation treatment for it, and had been hypothyroid ever since. During my pregnancies the doctor monitors closely to make sure my levels were normal for the sake of the development of the baby. At this check up she felt another goiter and sent me for an ultrasound. It came back much larger than expected and she then wanted to biopsy it to make sure it wasn't thyroid cancer. If it was I would need surgery, but it could wait until after the baby was born she re-assured me (hah - didn't work). Two weeks before the amnio I went to the endo's office for the biopsy. A needle the length of a baseball bat lay on the table (ok - I exaggerate - but you get the picture). Pregnant lady, so nothing for calming of the nerves, just lay on the table please. Anyone tried to lay flat on their back and not move while you are 7 months pregnant? Somehow I made it through (mostly by counting the little black spots on the acoustic tile of the ceiling). When she was done she sad she couldn't get a good sample and wanted me to go to the hospital to have an ultrasound guided biopsy done. What? I have to do this again? A week later and there I was, on a different table, with a different doctor, just a topical , counting those same stupid spots. Let me tell you, a ginormous needle to the neck hurts - a lot. Flash forward to the amnio and it was a breeze!!!
Biopsy came back negative, amnio came back positive. God works in mysterious ways.

God and Tomas, part three

Another month went by and it was time to go check if the double bubble was still there. The baby came into view on the screen and even I could see the two black spaces in the abdomen. So here we were, 6 months into it and it was a done deal. Surgery would be necessary. The doctor now switched gears and pushed for me to get an amnio to find out if the baby had DS. I didn't see the need as I didn't see how it would make a difference, and I didn't want to take any risks with an already compromised fetus. He went on to caution me about heart defects associated with DS and the Duodenal Atresia, and tell me that since the baby could not swallow amniotic fluid I would have too much, and be as large as someone carrying twins. He wanted Non-Stress tests every two weeks with increasing frequency as the pregnancy wore on. I saw a doctor (either him or the ob/gyn) every two weeks.
This was in October and as of yet we had not told any family about what was going on. . My bible study had ended in mid-September but the author of the books was holding a conference about an hour away from where we all lived. Most of the members of the group signed up to go and many of us were going to carpool. Also during this time my husband and I listed our house for sale so the job relocation could push forward. A quirky but fun Catholic tradition is to bury a statue of St. Joseph in your yard to help with a quick sale, and I was sorely tempted, but never got around to it. In the evenings after the kids were in bed I researched about the surgery, and also looked up the saints for expectant mothers. St. Joseph was one. I told my husband that maybe we were supposed to name this baby Joseph!
A few days before the conference a friend called to ask if I still felt up to it, and if I still wanted to go. I told her I did, that I felt a particular calling to be there. We drove over and got settled in the church. Well, as settled as a 6 month-extra-fluid carrying pregnant woman get get settled in a tiny church pew. The speaker got up and began a talk about the sanctity of the womb, and how every sperm and every egg were chosen specifically to bear fruit in the creation of that individual baby. That each conception was planned precisely by God, and that even though we may feel our pregnancies are a mistake, God knows better. Every one of my friends turned and smiled at me, and I was very grateful to God for clearly calling me to this place for this event. But it gets better.
Following the main speaker, a priest, who often helps her on her videos and at the live events, came out to talk. He walked on the stage and told all of us to take notice of the statue he was standing next to. It was St. Joseph! (As a side bar - at this point I was convinced the baby should be named Joseph - so if he was it is not on my head!). He talked about families and the men who protect them, then he went on to tell us about his younger brother. He was born 40 years ago with Down syndrome, and how his father would not leave him in an institution, and how his parents brought him home against the recommendations of the medical community and well meaning friends. When his brother was five years old he turned blue and stopped breathing. His mother drove to the hospital and his father did CPR in the backseat the whole way there. He died that day in the arms of his parents. The priest's sister was now expecting her fifth child and it was highly suspected that the baby had DS. His parents were overjoyed at the prospects of having another DS person in their lives, even though the loss of their son hung as heavy on their hearts as it did 35 years ago. Five years of wonderful, followed by a lifetime of heartache, and they would do it all again. Not only that, but they would have their daughter go through it; five short years and then devastation vs. never knowing the love of a DS child.
I was frozen. Really, how is it that God could care so much about me to send me these messages. How many other women in that room were pregnant? Maybe 4 others. How many with a now 1:2 chance of having a baby with DS? And how many NEEDED to hear that fathers love their children no matter what? Just one. Yet again God was leading me through the fog, guiding me to the peace that comes from resting and trusting in Him.

God and Tomas, part two

One month later I went for a follow up ultrasound with the maternal fetal doctor. We knew if the echogenic foci was still there, our chances of a DS baby would stay the same 1:4. I can't remember why, but I did not have the girls with me that afternoon. Looking back it was definitely a God thing, as I almost always have the girls with me. But I laid on the table and was ready for whatever was coming. Or so I thought. The foci was still there, and I was ok with it. It would be what it was and this baby would be who he would be. But then the tech went and got the doctor and the doctor took a looooong time looking at something on the screen. He then stopped, sighed, and turned to me. I remember the sigh vividly, it made every muscle in my body tense and ache.
He told me that he was fairly sure the baby had duodenal atresia. Both such foreign words to me I had to make him write them down. Because of a "double bubble" marker on the ultrasound screen he was pretty certain that was the case. It meant the baby's stomach had not attached to his intestines and he would need life saving surgery within days after birth. At that moment the words "down" and "syndrome" flew out the window. They were so large 15 minutes beforehand, and then they were just gone. My baby was broken. He could not eat, therefore, he could not live. I did not at that time know anything about TPN (nutrition through an IV) and no one told me anything about it until months later. All I knew then was that if he didn't have surgery he would die. My love for him expanded exponentially and wrapped itself around his developing body. Only one thing pounded in my brain. I wanted this baby to live. I didn't care what he had or what he was or what he looked like, only that he live and I get to love him outside like I loved him while he was inside. The doctor went on to tell me that there was a small chance what he was seeing onscreen was just something to do with the bowel development, but that he would check again in a month. To his credit he never asked me "the question". I left, picked up the girls and went home.
My husband was away on business and I went back and forth so many times during the day about whether to tell him or not. Finally, I decided to wait until he got home and not worry him while he was at his meeting. That all fell to pieces the moment he called home that night and I heard his voice say "Hi, honey". I just started sobbing hysterically, poor guy, he had to ask me yes or no questions I was crying so hard I couldn't talk. He must have had a good few minutes of complete panic before he found out what was going on.
Him -  "Is something wrong?"
Me  - affirmative sobbing grunt
Him - "Is it one of the kids?"
Me  - affirmative sobbing grunt
Him - "Olivia"
Me - negative sobbing grunt
Him - "Victoria?"
Me - negative sobbing grunt
At this point he paused a little bit and then said "The baby?" in a voice so filled with pain I knew he loved him already too.
I moaned my positive and then did my best to compose myself and get the news out. As much as he can drive me crazy, and he has some serious OCD issues let me tell you, at times like these that man is my rock. He talked me back to calm and stayed with me on the phone until I was ok for the night. And that was it. Our paradigm had shifted. Even a diagnosis of DS would still mean a healthy baby. But not anymore, with or without DS our baby would not be born healthy, and we were heartbroken.

God and Tomas, part one

Since I had gestational diabetes with my first two pregnancies I knew the level of care would be high during this one as well. I made the rounds with my OB and endocrinologist and got an appointment for a maternal fetal during the 4th month of the pregnancy. When I last saw my OB it was for a gyn visit and I left with a script for a mammogram and literature on osteoporosis, here I was 8 months later and pregnant! A friend of mine had also just had a baby at 36 years old and said it was the weirdest thing going through it all again on the other side of 35. She said the doctors may have well taken a giant red stamp marked "geriatric" to her folder!
Another friend, who was 38, had also just found out she was pregnant about two months before I did. She was hosting a bible study I was attending. We were thrilled to have someone to go through it with, and the other women in the bible study were so supportive. My friend paved the way for me, and impressed several key points on me along the way. When it was time for her quad screen she only agreed with the understanding that the doctors were NOT to discuss terminating the pregnancy based on the results. Sure enough her levels came back high. I remember writing her an email to reassure her, and I told her that her family would not only survive but find a way to prosper no matter whom God was knitting together for them. This was all while I was in my first trimester and had no inkling of what was to come.  Her son is a perfectly healthy two year old now, and the delight of their family.
My fourth month rolled around and it was time for the maternal fetal. I was so excitied because we could find out the sex of the baby. The day before the appointment Tropical Storm Fay blew into town. It started raining and never stopped for 78 hours. We had 52" of rain by the time it was over. Midway into the deluge I had to make a decision about whether to keep the appt. or not. The bridges to my island town were still open so I chanced it and went over to the mainland. I had to find out what I was having! My girls were with me and as the tech was getting started she asked them what they would prefer. They had talked about it beforehand of course and the running favorite was a boy, since they both already had a sister. Pretty logical right? Part way through the ultrasound the tech told us it looked like the girls were going to get their wish. Joy swept through me and I could not wait to tell my husband.  Somewhere in that visit, the doctor came in and talked about echogenic foci on the heart and combined with the increase in my quad screen results meant a 1:4 chance of a baby with Down Syndrome.
We got into the car (soaking wet from the tropical storm raging outside, of course!) and called my husband and told him the great news. I did tell him about the increase in the risk of DS but we both still liked the odds and really didn't think more of it. Well, later I did.
I always fell in love with my babies from the pink line. I knicknamed them before we knew the sex, and I loved everything about being pregnant. So, 4 months into it, I was deeply connected to the little bibble (Victoria picked his nickname) growing in there. When I thought about having a baby with DS, I had a vague idea that it would be harder to raise a child with a diability, but mostly I worried about what my husband would be like, and how he would handle it. One night in bed I saw the Blessed Mother. It was between sleep and wakefulness and most definitely not a dream. It wasn't really what I would expect a vision to be like either so I don't know what it was. But she stood there and I stood there, both in a white emptiness all around us, she above me as if on a platform. We were facing each other and she bent down and placed a bundled, blanketed baby in my arms. This baby, my son. That was the beginning of me looking for the hand of God in the life of Tomas. If you read closely you can see Him working beforehand, but I was oblivious up until that point.

God and Tomas, prologue

I wanted two children. My husband wanted two children. A match made in heaven for this and many other reasons. We would send them to Catholic school, and live according to our faith. That is a very brief synopsis of the first 13 years of my marriage.
We were married almost six years before my oldest was born. Three years later her sister was born. Two beautiful, healthy, perfect girls, and we were happy and finished. A two year kidney illness on my part and a 3 year horrific toddlerhood on the younger one's part and that decision was just further cemented. Preschool came and went for the oldest, and although it was at a Catholic school, it was not what I was looking for.
My husband and I decided to try homeschooling. Actually, I decided, and bullied him until he finally agreed to let me test Kindergarten - figuring I couldn't screw it up too bad and we could always just stick her back in if I did.  I joined a Catholic homeschooling group and found a very happy place indeed. This was definitely our groove and where we were all supposed to be. I thanked God often for the richness of this life, and contentment reigned.
In hanging with the Catholic homeschooling community, I began to hear a lot about NFP (Natural Family Planning) and fertility charting. I just figured it wasn't for me and shoved it aside. I always knew the Catholic church disapproved of artificial birth control, but just went on my merry way anyhow, never reconciling the two, but not worried that I couldn't. Several years went by and then Catholic radio came to town.
For the first time, I began to understand WHY the church doesn't allow contraception. I read Humanae Vitae and knew that I had to change. I tortured my poor husband, who was perfectly happy with the way things were, thank you very much. Finally, he told me to bring home some literature so he could read it. I knew then we would change. He read some things, and listened to some programs, and we were set free to really test the waters of our faith.
We were still not planning on having any more kids, we just needed to stay not pregnant in a way that didn't offend our faith. Well, a few months into the charting and I was pregnant (I confess poor record keeping on my part - I did not learn enough in those early months and never took a class). Two weeks later and I miscarried. Neither of us was thrilled initially about the pregnancy, but I wrapped my heart around the little pink line pretty fast, while my husband was not there yet. But the miscarriage devastated me, and he shared my pain, for my sake.
A few months went by and I told him I wanted to have another child. He wasn't ready, and I waited. Sometimes patiently, sometimes not. Another year or so went by and he said he would be ready in August. I still laugh when I think about this, such an arbitrary thing, but it gave him a sense of control, and I was over the moon happy to have him on board - so August it would be.
I found out I was pregnant in May of that year.
I need to back up a bit, in April my husband got a job offer for a transfer to another division, which also meant a relocation. We went back and forth for a while, and spent the better part of the next few weeks making the decision. One weekend in May we went over all the financial aspects, made the pro/con lists, etc...In the end he decided to accept and signed the papers on a Monday morning. I tested positive on Tuesday.
And that is where the story really begins. Me, with 8 months left of my pregnancy; him, with 1 year left to relocate to his new job; and both of us inching our way deeper into the faith of our childhoods.

Catching up is hard to do!

14 days of laundry from 5 people! 'Nuff said.
Will be back with more, but I am loving all the DS awareness posts.