Last night I cried. Alot. It was ugly, beautiful, full of despair, redemptive, dirty, and cleansing. And it was exactly what I needed. I find that when Tommy works night shifts are the times when I feel the most vulnerable. I sat alone in my room, computer in front of me, ready to type out something to clear my head. But my heart told me otherwise and I ended up looking at the blogs of many new friends. Alot of them I have never seen in person nor will I ever lay my eyes upon their faces, but we are bonded by the fact that we all have babies diagnosed with Trisomy 13, and from each I have read I can also tell that we are all sisters in Christ. So I allowed myself to sit and read their blogs, and to gain inspiration and healing from their words. And alot of the time what they had to say wasn't pretty. Feelings were gritty, raw, and uninhibited, and yet they comforted my heart. Not one of their children lived for more than an hour on this earth. 60 brief minutes, and yet an eternity. A lifetime. I was reminded by a friend that God promises each of us a lifetime. But a lifetime is not a guarantee of 100 years, or 50, or even 5. A lifetime is the gift of time each of us are given to survive and thrive in this world. We are given no more and no less, and it is up to each of us to make the most of the gift we are given. And no, it is often not fair. Why do murderers, rapists, and child molesters remain free and on our streets while innocents die cruel and horrible deaths? I wish I had all of the answers, but I can definitely say that I am glad that I am not the one in charge. I thank God that He is God and I am not.
I am not strong. I feel so weak inside sometimes that it is like my bones are made of jello. Some days I just want to stay curled up in my bed and not get out. And I question. Why? What is the purpose? What am I supposed to do? How, Lord, am I supposed to handle this situation? And alot of the time the answer is "Lindsey...be still". I am definitely not opposed to crying in front of others. I have never had an issue of showing my vulnerabilities, and I don't consider crying a sign of weakness. But I also don't want to walk around with my head held down. I still carry within me a great joy, and I want others to see that I am not going to live in despair regardless of my circumstances. For one, Lincoln is alive and well. His life is something worth celebrating! Am I not acting as all mothers would who are faced with a similar situation? I wouldn't know what else to even consider. I can't imagine the other alternatives that some choose to take when they find out that their babies aren't "perfect". I am so thankful that my doctors never even asked me if I wanted to terminate. Why don't they just cut off my right arm, because Lincoln is just as much a vital part of me. And have I mentioned before that he is perfect? :)
So I am reading these blogs, and although they are so encouraging, they are a little disconcerting at the same time. Let's be clear - I am still praying for my miracle. I still pray that the test was wrong, that the symptoms aren't that severe, that God will reach His hand into my womb and heal my sweet baby. How could I not? The foundations of our faith are based on just that...faith. And I know that God has the power to heal, so I beseech His grace and mercy everyday. However, I also know that He has a plan. Maybe healing for Lincoln won't come in this world. I know that he is going to be healed one way or another, either in this life or in Heaven. But I am selfishly praying that it is in this life. And I have to believe in that. I cling to that. But I also look at these other women and wonder why their children weren't healed. I know that they prayed the same things. And so many of them are so much more faithful than me, Lord, so why not them? What a testimony they would have! But then I am reminded that they do have a testimony, and a ministry, and my sobbing, blubbering, snotty-faced reading of their blogs proves it. And yet I still pray for my miracle. But at the same time, I am also fully human, and by nature I am a realist. And as much as I hope, I try to prepare myself for the possibility that God's plans for Lincoln may not mirror what my hopes are. His plans far exceed my own comprehension. So if the unspeakable happens, what am I supposed to do? How am I supposed to say goodbye to my beloved child? A child that was prayed for, loved, and a perfect miracle to me and his daddy? How do you do that? The simple answer is that I just don't know. I can't comprehend the enormity of it all, and this is where my tears start flowing freely. I don't know. I don't know. But I do know that we will be ok. I do know that we will look at Lincoln's life, however long it may be, as a blessing. I do know that he will always reside in my heart. I may never ever feel whole again, but I will go on because I still want to share the love of Christ with Rocco and with others. Especially children. People keep telling me that I have the right to be mad at God. Maybe I do...but I'm not. I never have been. I think that must be hard for nonbelievers to understand, but I know there is a plan. And I trust. And I am learning to just be still. Besides, being mad wouldn't change the outcome for Lincoln. It would only change my outcome and make me a bitter, hardened person. And I don't know alot of things God has in store for me, but I KNOW that being that type of person is not one of them. I want to love others, and bless others. And fulfill my ultimate purpose. And I want Lincoln to be proud of me.
So I let myself be still...and I wept. I sat in the room that belonged to me during my childhood, where my dreams all seemed so big and so attainable, like nothing could ever be wrong in my life, and I felt safe. And because I needed it, I quietly crept down the hall to where Rocco was sleeping so peacefully in his crib, and I just picked him up and sat down in our recliner together. And I just held his little sleeping body, all curled up around me and snuggled tight. And I glanced on his angelic face and knew that at that moment, everything was right in the world. And I thanked God for the blessings of all of my children, not just the ones that I know by name, but also the ones that I will always carry in my heart who are part of this journey. You see, without my first two losses, I wouldn't have my sweet Rocco. God had a plan. I didn't see it at the time, but you know what they say about hindsight. And let me tell you about my sweet Rocco. The other day we had to see his pediatrician. I had spoken with him previously about my pregnancy complications, and wanted to tell him about my diagnosis. He came into the room and we started to discuss everything, and I got emotional. He reached for a box of Kleenex, and when he went to hand it to me, Rocco (who was sitting in my lap) reached out his little hand and grabbed a tissue and handed it to his mommy. I thought my heart was going to burst open. He has such a gentle spirit and a kind soul beneath his all-boy, tough-guy, wrestlemania veneer. And I thanked God for such a precious boy, and that I was the one that He picked to be Rocco's mommy, and that He trusted me enough with the care of this precious child. And I know that Rocco will be a wonderful big brother. I can see him putting on his armor and going to war for his little brother, playing the part of the hero to the person in need. And he is already doing that, especially for me. And I think it makes Lincoln smile.
I am thankful that God provided us a buyer for our home. He knew that on the nights that Tommy was working that I would need the comfort of my parents. Even though they were downstairs sleeping, it was comforting to know that they were there. And I am sure that most people would say that we are crazy to continue on with the construction of our new home. But I ask why not? Not starting it would signify our lack of hope and faith. I pray that Lincoln will come home from the hospital and into a brand new room all his own. And I am thankful for the distraction of construction during this time. It is good to keep busy and keep my mind occupied.
And so here I have sat for an hour, writing about everything and nothing. And it is time to get into bed, and I will say my prayers. And I will thank God for another beautiful day, a husband who knows how to balance me out and is my silent rock, wonderful family and friends, my precious Rocco, and for Lincoln's little baby kicks into my stomach...and I am reminded of the gift of a lifetime, and I will continue to stand by Lincoln and fight for his.
May God bless you and keep you, and I pray that you, too, can learn to just be still...
Sunday, March 25, 2012
Saturday, March 24, 2012
What it means to be Held
About a week after Lincoln's diagnosis, a song started to play in my head. I knew the chorus, but not the verses. You see, I remembered a sweet little girl getting up on stage one Sunday morning to sing it at church. It wasn't a song I knew at the time, but I remember that it touched my heart. She wasn't someone that I knew personally, but I know her sweet extended family, and I was proud for them as she stood up there and belted out a beautiful blessing. And it was just for me. And no one knew at the time. My how God works in mysterious ways. I sent her aunt a message the other day to relay to her what I was thinking. She remembered the exact instance I was speaking of, and actually said that the family thought that her choice of song was a little strange at the time as it was such a "mature" song that touched on some deep issues. But now they can see, as can I, exactly why she chose the song she chose to sing. She really didn't choose it as much as God chose it for her, and he put the chorus in my heart that I might remember it during my times of need. The song is by Natalie Grant, and is entitled "Held". As I mentioned previously, all I could recall was the chorus, but if you look at the lyrics to the verses, they are profoundly my story. I pulled this up at work the morning I was thinking of it and had to get up to close my door. And I just sat quietly for a little while and meditated on the fact that God has been preparing my way this whole time, and that He is holding me in His mighty hands, and that He will continue to hold me throughout the duration of the path that He set for me almost 29 years ago. And my prayer is that whenever times get tough, nights seem really dark, or the world seems lonely, that I will always remember that I am infinitely and mightily "Held"...
Friday, March 23, 2012
For New Readers and Hugs
Hey guys! If you are like me and are totally blog illiterate, I wanted to let you know that to start from the beginning you should read from the bottom up. I know that some of you are rolling your eyes, but some of my dear friends are saying "thanks, friend" right about now. You know who you are :)
I apologize from the beginning that I don't have anything fancy, and at the moment have no pictures. I will try to work on that, but since I don't know alot of what I am doing I hate to waste my free time formatting when I could be writing. As you will see from my three measly posts, I have Lots to say! It may not make any difference to you what I am writing, but I find it is helping me to navigate these murky waters. I pray that my story can help at least one other person, as I have found so many others who have blogged about their own journeys and their faith has been a comfort to me. I think that when I am writing that everything sounds so eloquent in my head, but when I get it down on the screen and read it it almost sounds laughable to me. I am sure that is the Type A personality, which is another reason why there are already three posts. I wanted to share the background of the story before just jumping into my feelings on everything. I think it is important for others to know where Tommy and I are coming from. Note that everything written has been by me and he may or may not agree with everything I say. If he so chooses to take the time to express himself I will make it clear that he is the writer. We all evaluate and express our own feelings in different ways, and I tend to need to share mine. Sometimes too much, as you might see :)
And one more thing I learned from another mother of a Trisomy baby. I know lots of you don't know what to say or how to act around us. That's ok, as alot of the time I feel like I don't know how I should act either. But please don't treat us like we have the plague or just ignore us totally. I know it is difficult to understand and you want to find words to fill the void, but it is uncomfortable. So instead of having to say anything, just give us a hug. We understand. We'll know you care and understand. And your love and support will be poured out over us through your love. No words are needed to express that.
We love you all and ask that you continue to join us in prayer for sweet Lincoln Alan. Keep smiling, and I apologize for this, but sometimes you might need to grab some tissues...
I apologize from the beginning that I don't have anything fancy, and at the moment have no pictures. I will try to work on that, but since I don't know alot of what I am doing I hate to waste my free time formatting when I could be writing. As you will see from my three measly posts, I have Lots to say! It may not make any difference to you what I am writing, but I find it is helping me to navigate these murky waters. I pray that my story can help at least one other person, as I have found so many others who have blogged about their own journeys and their faith has been a comfort to me. I think that when I am writing that everything sounds so eloquent in my head, but when I get it down on the screen and read it it almost sounds laughable to me. I am sure that is the Type A personality, which is another reason why there are already three posts. I wanted to share the background of the story before just jumping into my feelings on everything. I think it is important for others to know where Tommy and I are coming from. Note that everything written has been by me and he may or may not agree with everything I say. If he so chooses to take the time to express himself I will make it clear that he is the writer. We all evaluate and express our own feelings in different ways, and I tend to need to share mine. Sometimes too much, as you might see :)
And one more thing I learned from another mother of a Trisomy baby. I know lots of you don't know what to say or how to act around us. That's ok, as alot of the time I feel like I don't know how I should act either. But please don't treat us like we have the plague or just ignore us totally. I know it is difficult to understand and you want to find words to fill the void, but it is uncomfortable. So instead of having to say anything, just give us a hug. We understand. We'll know you care and understand. And your love and support will be poured out over us through your love. No words are needed to express that.
We love you all and ask that you continue to join us in prayer for sweet Lincoln Alan. Keep smiling, and I apologize for this, but sometimes you might need to grab some tissues...
Thursday, March 22, 2012
Initial Indications and Diagnosis
As all expectant parents are, Tommy and I were so excited to share our news with our friends and family but also a little hesitant based on our past experiences. Therefore, we decided we would wait until we hit that ten week mark before we told anyone. So at Christmas, Rocco paraded out in front of the family with his "I have a Christmas secret...I'm gonna be a big brother!" t-shirt. The first weeks of my pregnancy had gone off without a hitch. I am one of those hated women that doesn't seem to be affected by morning sickness (at least with my two boys...I am sure my first pregnancy was girls and I was sick as a dog every morning), and all of my hormone levels and bloodwork were reading perfectly. We were celebrating one of the greatest holidays of Christianity with the knowledge that a new child would be joining in the celebrations next year, and it made the season extra special. I was scheduled to go to the maternal-fetal specialist for my first appointment with them on January 9th. We bopped into the waiting room that morning feeling like old pros. It hadn't been much more than a year since our last visit there, and we felt like we knew more of what to expect this go around. Boy, were we wrong!
At each appointment, the very first place you go is to ultrasound. I was so excited to see our baby again! We had already had two ultrasounds at the fertility specialist, but the baby is too small to even see anything during those times. So in we went with hopeful expectations. Right away we knew that something looked different than it had with Rocco. There was a large mass in the baby's abdomen that just seemed a little too big. A black mark on the screen. The ultrasonographer pointed out that it was the baby's bladder and it seemed a bit too large for the baby's gestational age. After looking over everything else, it appeared that the baby was fine, and after speaking with our doctor it was determined that we would be put on a week by week visit schedule for close monitoring for the next few weeks. Alot of times these types of things will correct themselves, especially when discovered so early in the pregnancy (keep in mind that a "normal" pregnancy wouldn't have an ultrasound until 20 weeks, and I believe I was 13 weeks at the time). So we went home, small worries in our heads, but prayers in our hearts for the healthy baby that looked so perfect on the screen.
As the weeks passed, the bladder appeared to be stable. Our doctor had taken us into "the room" (every parent that has had some type of unpleasant news delivered knows what "the room" is), and we discussed possibilities very early on. We were told from the very beginning that there could be a possible blockage from the bladder to the kidneys, which could in turn cause renal failure which could lead to death. We were also told that it could be something that is seen quite frequently that might need to be followed up by a pediatric urologist after birth, but nothing life threatening. The possibility of a chromosomal disorder was given, but honestly I don't think anyone ever gave any homage to it. My doctor honestly believed that this was something that was going to stabilize and be ok throughout the pregnancy, and I was right there with him. Who even expects that a 28 year old woman would have a child with a chromosomal problem? I know everyone knows that the older a woman gets before having a baby, the higher the risk, but at 28 I kind of felt like I was at the perfect age. (Let's be honest, in today's society 28 is like the infancy of birthing women, and toddlerhood at the latest! It was only after Lincoln's diagnosis that I found out that the average age of a mother of a child with Trisomy 13 is 31.) So home we went, still feeling like there really weren't any problems. Tommy and I know that we breed little fighters, as Rocco still holds the record in the NICU at Children's Hospital for number of pacifiers thrown out of his crib and the farthest throw. Yes, you read correctly that Rocco was a NICU baby. Although he was born a week early, he was quite mature and weighed 8 and 1/2 pounds. Apparently his little systems were ready to go before the labor was, and he had a bowel movement while still in the womb. Therefore, at birth, he aspirated meconium, which caused him to have a collapsed lung. When he was born he was immediately whisked away and intubated. We didn't even get to hold him or see him. I tell you this for two reasons. One, to demonstrate what a little fighter he is, and still is to this day. (Boy, he has a temper and a stubborn streak. I have NO IDEA who he gets that from!) And two, because I wanted to tell you about my dream.
Right after I became pregnant with Lincoln I had a dream that I delivered a beautiful baby boy that looked just like Rocco but with dark hair. He was wrapped in a blanket and I was such a proud momma holding him up for the family to see how beautiful he was. That was it. It was perfect! I remember thinking right away that I hoped that I could hold this child immediately after birth the way I didn't get to hold Rocco. And I knew from the beginning that Lincoln was a boy. I never even had picked out a girl's name or considered one, because I just knew. And after that dream, I felt a little peaceful about the fact that everything was going to go smoothly in this pregnancy. Looking back, I now remember that I took that visual and made the tagline "healthy baby" in my head because I was able to hold him and he was so beautiful. At the same time, I never really felt the same about this pregnancy as I did with Rocco. It is really hard to explain. There was never a feeling of doom, just a little inkling in the back of my head that maybe something wasn't all the way right. After we had that first doctor's appointment and noticed the enlarged fetal bladder, I figured that was what it was and now I could put that feeling behind me and concentrate on how we could help Lincoln get better. But for some reason, I couldn't shake it. I think God was trying to help prepare me mentally for what lay ahead, but at the time I didn't want to listen to anything like that. There were even a few people that I love that I started screening calls from, because I knew they would only talk about worrying over things, and I just didn't want to hear it. I only wanted to think positively and pray for the health of my child. But then I had another dream. This time, I was being chased. And it felt like I was being chased by evil and demonic things. Very disconcerting, but also a relief that I wasn't "caught". I didn't have any crazy analogies for this, only that pregnant women often have crazy weird dreams. And I have always had crazy, weird, surreal, very vivid dreams regardless. So I didn't really think anything of it. Then the craziest thing happened. When I was about 18 weeks pregnant Tommy and I returned home one evening to find a message on our machine. A random caller wanted to purchase our home. What?! We had had the home on the market the prior year, but hadn't had any luck, so we had just decided to stay where we were for another few years. We had a new baby on the way and that just seemed like alot to take on. However, Tommy being Tommy, called the people back and told them that everything was for sale at the right price (you see, we own property down the street from my parents and have had dreams of building our home for several years). Surprisingly, the people came the next day to see the house, then made a full price over and accepted all of our terms. We couldn't believe it. I think I lived in a daze for the next three weeks while we packed away everything and prepared to move in with my parents. We planned to live with them for roughly 9 months to a year while we built our house. I can't tell you how many people said "Wow! In this economy someone randomly called to buy your house? That is a God thing!" Well, it definitely was a God thing. I remember about two weeks after signing the contract calling my mom to confess a dirty little secret. I told her that I couldn't help but feel that since we were moving in with her and dad that it must mean that there was something terribly wrong with the baby. Being the nurturer that my mom is, she assured me that it wasn't the case and that I was just hormonal. Still, the uneasiness was there. When the time was rolling around for my 20 week ultrasound (the big-daddy one where they do all of the anatomy measurements), I was feeling pretty confident. We had had an ultrasound every week up to that point and the fetal bladder had been looking better and better. In fact, my husband had to work the night before the ultrasound and I told him to just stay home and sleep. He had just worked a 12 hour shift and was dead on his feet, and because we had no reason to think any differently, I told him the night before to just come on home and go to bed and I would call him when we left the doctor's office. That night, I had the same bad dream again.
The next day, my mom and I went to the doctor. I laid on the table while the ultrasound was done and watched my little man on the screen. Note that at this point they still weren't able to tell me if my baby was a boy or a girl. This was a slight reason for concern in the weeks leading up to this because of the bladder and urinary issues that were present (apparently more common in boys). At the 20 week, they said they still couldn't tell. This was strike one. Strike two was the ever present slightly enlarged urinary bladder. Strike three was a condition called micrognathia, which had been mentioned the previous week, but wasn't anything very concerning. It is basically a small jaw, and is apparently quite common and can be fixed with surgery. Strike four was a two vessel umbilical cord instead of the normal three vessel cord. Again, previously noted, but the strikes were starting to add up. The ultrasonographer measured the baby and he was so big! Everything was measuring on track or big for age until we got to the cerebellum. I took anatomy and physiology in school, so I know enough medical language to be dangerous. When I saw her notations I knew that the abbreviation meant cerebellum, and I knew that it was measuring smaller than it should be. About four weeks small to be exact. She didn't say anything, so I just went ahead and blurted out that I knew something was wrong. She said a part of the brain was measuring a little bit small, and that we'd need the doctor to take a look. When she left the room, I broke down. And wept. And I knew. I knew that something was wrong. After the doctor came in and looked, we had to go to "the room" again to speak to a geneticist. At this point, I was in a daze. I had the piece of mind to say that I needed to call Tommy and get him on speakerphone. Although I hated to call and awaken him with such terrible news. But he needed to be a part of this conversation. It was at this point that an amniocentesis was presented as basically the only option to really determine what was actually going on with the baby. With all of the little things coming together, it appeared that a syndrome of some type might be the underlying cause of all of these factors. Tommy and I have always denied early pregnancy testing because it didn't matter to us, and it still didn't matter this time except to determine if something was going on and how we needed to prepare to care for our child. An appointment was scheduled for the next day.
When I got home Tommy and I cried together. No parent can fathom that something might be wrong with their child. I had asked the geneticist to be straight with me and tell me if our child's symptoms aligned with any of the possible syndromes that would be tested. She said right away that although this was in no way a diagnosis, the symptoms aligned with Trisomy 18 or Trisomy 13. When I heard Trisomy, I begin to think in terms of Down's Syndrome, which is Trisomy 21. I could handle that. There would be struggles and ups and downs, but Lincoln would be ok. Then, I don't know why, but out of my mouth came the words "what is the life expectancy?". That was the blow that really took my breath away. Often fatal. 50% die in utero. Of those that make it to birth, 50% are stillborn. Of those that live more than a day, or a week, or two weeks, 90% die before their first birthday. It was too much to take in. Looking back, I really felt like I was in the twilight zone. I think the room started spinning and everything she said was a blur. How could it be possible that the baby that I felt moving and kicking so happily inside of me might be so sick? We cried ALOT that day, but then we stood up and said enough is enough. This is our child. We love him no matter what, and we trust that God has a plan for him. No more tears. It sounds silly to think of it and even sillier to write it, but I actually laid down this law with my parents. I had cried myself out. I didn't want to live the next two weeks awaiting results in doom and gloom. I had the light of the world living in my heart, and I was going to be hopeful and in prayer about my baby. I believe God gave us medicine, but I also believe that He is the great physician, and He can heal any ill at His word. And I was gonna stand on that. I don't know how I even made it to that point, but when it came I was ready to grasp it. As a good friend would say, that is just Grace. I scoured my Bible for verses about healing, and miracles, and faith in the storms and struggles of life, but one verse kept coming back to me, and it was one that I had clung to throughout the entirety of this ordeal: Psalm 56:3 "When I am afraid, I will put my trust in you." And I was afraid. More scared than I had ever been in my life. But I knew I was in the best possible place that I could be. And in that time, in a very dark place, God granted me some peace.
The next day, we went in for the amnio. I was a little apprehensive about the procedure, but it was a piece of cake. All of the nurses seemed to smile at me a little extra brightly that day. I am not sure if they all knew the situation or if it was my imagination, but I smiled back and told them I was ok. My doctor and the ultrasound tech from the day before commented on my attitude. I told them the no cry rule (which I had to remind mom of during the procedure), and that I had a hope that was grounded on my faith in Jesus Christ. I am blessed to have doctors who are believers, and I know that they were in prayer with me for good results. The procedure took about 2 minutes, and now the wait would begin. It could be anywhere from 8 to 14 days to get results.
I got the phone call on day 10. We had been given the option to hear results by phone or get the call that they were in and drive downtown to the office. I think the drive would have been horrendous waiting and anticipating, so I chose to hear by phone. I think I knew somewhere somehow that the results weren't what I was hoping and praying for. When the call came the geneticist told me right away. I was so grateful that there weren't any ridiculous lead-ins or anecdotes, just the diagnosis. My first question after that was about gender. My initial intuition was confirmed that he was indeed a boy. Let me say that my doctor's office was incredible throughout this time. The entire staff are so empathetic and I know they truly care about me and my baby. If I wanted to come in, they would arrange it. I just needed to tell them when and where. This was a Thursday afternoon. I already had a Monday appointment scheduled, and I just needed some time to soak it all in. Besides, it wouldn't change the diagnosis. Full Trisomy 13 (47, XY, +13). In the medical world, a death sentence. In a God world, a sweet little miracle that continues to kick his mommy even as she types, who is perfect and beautiful in the eyes of his parents and his Creator, the one who made him PERFECT in all regards. A child that is making an impression upon the world already, as his story is shared with others and touches lives and hearts. A child who will leave his mark on the world regardless of the time he spends in it, as his mommy and daddy have already seen lives changed and miracles happen because of his sweet existence. It's hard to describe at this point of the story my feelings of being blessed. In my darkest hour, God reached down and blessed me. Lincoln has already taught me what it means to love truly unconditionally, to trust in God's plan, and to believe the promises that He has made to us. Every day I still pray for a miracle of healing for my son. I pray that he will be born with a perfectly matching set of 46 chromosomes in every cell. I pray that I will get to watch him grow and play with his big brother, to see him score a touchdown, to watch him graduate, get married, and have children of his own. I still pray for these things because I believe that if God intends to make that Lincoln's story, then He can. I know the reality of the situation, but I am trying not to dwell on it. I just pray for time, and what is best for my sweet boy. And that others will see that Lincoln's life is NOT in vain, and that it has a purpose and a reason. He was made PERFECT and is PERFECT. And I am anxiously awaiting the day of his birth, when I can hold him firmly in my arms and tell him how loved and cherished he is. I am blessed to be able to say that I am Lincoln's Mommy.
At each appointment, the very first place you go is to ultrasound. I was so excited to see our baby again! We had already had two ultrasounds at the fertility specialist, but the baby is too small to even see anything during those times. So in we went with hopeful expectations. Right away we knew that something looked different than it had with Rocco. There was a large mass in the baby's abdomen that just seemed a little too big. A black mark on the screen. The ultrasonographer pointed out that it was the baby's bladder and it seemed a bit too large for the baby's gestational age. After looking over everything else, it appeared that the baby was fine, and after speaking with our doctor it was determined that we would be put on a week by week visit schedule for close monitoring for the next few weeks. Alot of times these types of things will correct themselves, especially when discovered so early in the pregnancy (keep in mind that a "normal" pregnancy wouldn't have an ultrasound until 20 weeks, and I believe I was 13 weeks at the time). So we went home, small worries in our heads, but prayers in our hearts for the healthy baby that looked so perfect on the screen.
As the weeks passed, the bladder appeared to be stable. Our doctor had taken us into "the room" (every parent that has had some type of unpleasant news delivered knows what "the room" is), and we discussed possibilities very early on. We were told from the very beginning that there could be a possible blockage from the bladder to the kidneys, which could in turn cause renal failure which could lead to death. We were also told that it could be something that is seen quite frequently that might need to be followed up by a pediatric urologist after birth, but nothing life threatening. The possibility of a chromosomal disorder was given, but honestly I don't think anyone ever gave any homage to it. My doctor honestly believed that this was something that was going to stabilize and be ok throughout the pregnancy, and I was right there with him. Who even expects that a 28 year old woman would have a child with a chromosomal problem? I know everyone knows that the older a woman gets before having a baby, the higher the risk, but at 28 I kind of felt like I was at the perfect age. (Let's be honest, in today's society 28 is like the infancy of birthing women, and toddlerhood at the latest! It was only after Lincoln's diagnosis that I found out that the average age of a mother of a child with Trisomy 13 is 31.) So home we went, still feeling like there really weren't any problems. Tommy and I know that we breed little fighters, as Rocco still holds the record in the NICU at Children's Hospital for number of pacifiers thrown out of his crib and the farthest throw. Yes, you read correctly that Rocco was a NICU baby. Although he was born a week early, he was quite mature and weighed 8 and 1/2 pounds. Apparently his little systems were ready to go before the labor was, and he had a bowel movement while still in the womb. Therefore, at birth, he aspirated meconium, which caused him to have a collapsed lung. When he was born he was immediately whisked away and intubated. We didn't even get to hold him or see him. I tell you this for two reasons. One, to demonstrate what a little fighter he is, and still is to this day. (Boy, he has a temper and a stubborn streak. I have NO IDEA who he gets that from!) And two, because I wanted to tell you about my dream.
Right after I became pregnant with Lincoln I had a dream that I delivered a beautiful baby boy that looked just like Rocco but with dark hair. He was wrapped in a blanket and I was such a proud momma holding him up for the family to see how beautiful he was. That was it. It was perfect! I remember thinking right away that I hoped that I could hold this child immediately after birth the way I didn't get to hold Rocco. And I knew from the beginning that Lincoln was a boy. I never even had picked out a girl's name or considered one, because I just knew. And after that dream, I felt a little peaceful about the fact that everything was going to go smoothly in this pregnancy. Looking back, I now remember that I took that visual and made the tagline "healthy baby" in my head because I was able to hold him and he was so beautiful. At the same time, I never really felt the same about this pregnancy as I did with Rocco. It is really hard to explain. There was never a feeling of doom, just a little inkling in the back of my head that maybe something wasn't all the way right. After we had that first doctor's appointment and noticed the enlarged fetal bladder, I figured that was what it was and now I could put that feeling behind me and concentrate on how we could help Lincoln get better. But for some reason, I couldn't shake it. I think God was trying to help prepare me mentally for what lay ahead, but at the time I didn't want to listen to anything like that. There were even a few people that I love that I started screening calls from, because I knew they would only talk about worrying over things, and I just didn't want to hear it. I only wanted to think positively and pray for the health of my child. But then I had another dream. This time, I was being chased. And it felt like I was being chased by evil and demonic things. Very disconcerting, but also a relief that I wasn't "caught". I didn't have any crazy analogies for this, only that pregnant women often have crazy weird dreams. And I have always had crazy, weird, surreal, very vivid dreams regardless. So I didn't really think anything of it. Then the craziest thing happened. When I was about 18 weeks pregnant Tommy and I returned home one evening to find a message on our machine. A random caller wanted to purchase our home. What?! We had had the home on the market the prior year, but hadn't had any luck, so we had just decided to stay where we were for another few years. We had a new baby on the way and that just seemed like alot to take on. However, Tommy being Tommy, called the people back and told them that everything was for sale at the right price (you see, we own property down the street from my parents and have had dreams of building our home for several years). Surprisingly, the people came the next day to see the house, then made a full price over and accepted all of our terms. We couldn't believe it. I think I lived in a daze for the next three weeks while we packed away everything and prepared to move in with my parents. We planned to live with them for roughly 9 months to a year while we built our house. I can't tell you how many people said "Wow! In this economy someone randomly called to buy your house? That is a God thing!" Well, it definitely was a God thing. I remember about two weeks after signing the contract calling my mom to confess a dirty little secret. I told her that I couldn't help but feel that since we were moving in with her and dad that it must mean that there was something terribly wrong with the baby. Being the nurturer that my mom is, she assured me that it wasn't the case and that I was just hormonal. Still, the uneasiness was there. When the time was rolling around for my 20 week ultrasound (the big-daddy one where they do all of the anatomy measurements), I was feeling pretty confident. We had had an ultrasound every week up to that point and the fetal bladder had been looking better and better. In fact, my husband had to work the night before the ultrasound and I told him to just stay home and sleep. He had just worked a 12 hour shift and was dead on his feet, and because we had no reason to think any differently, I told him the night before to just come on home and go to bed and I would call him when we left the doctor's office. That night, I had the same bad dream again.
The next day, my mom and I went to the doctor. I laid on the table while the ultrasound was done and watched my little man on the screen. Note that at this point they still weren't able to tell me if my baby was a boy or a girl. This was a slight reason for concern in the weeks leading up to this because of the bladder and urinary issues that were present (apparently more common in boys). At the 20 week, they said they still couldn't tell. This was strike one. Strike two was the ever present slightly enlarged urinary bladder. Strike three was a condition called micrognathia, which had been mentioned the previous week, but wasn't anything very concerning. It is basically a small jaw, and is apparently quite common and can be fixed with surgery. Strike four was a two vessel umbilical cord instead of the normal three vessel cord. Again, previously noted, but the strikes were starting to add up. The ultrasonographer measured the baby and he was so big! Everything was measuring on track or big for age until we got to the cerebellum. I took anatomy and physiology in school, so I know enough medical language to be dangerous. When I saw her notations I knew that the abbreviation meant cerebellum, and I knew that it was measuring smaller than it should be. About four weeks small to be exact. She didn't say anything, so I just went ahead and blurted out that I knew something was wrong. She said a part of the brain was measuring a little bit small, and that we'd need the doctor to take a look. When she left the room, I broke down. And wept. And I knew. I knew that something was wrong. After the doctor came in and looked, we had to go to "the room" again to speak to a geneticist. At this point, I was in a daze. I had the piece of mind to say that I needed to call Tommy and get him on speakerphone. Although I hated to call and awaken him with such terrible news. But he needed to be a part of this conversation. It was at this point that an amniocentesis was presented as basically the only option to really determine what was actually going on with the baby. With all of the little things coming together, it appeared that a syndrome of some type might be the underlying cause of all of these factors. Tommy and I have always denied early pregnancy testing because it didn't matter to us, and it still didn't matter this time except to determine if something was going on and how we needed to prepare to care for our child. An appointment was scheduled for the next day.
When I got home Tommy and I cried together. No parent can fathom that something might be wrong with their child. I had asked the geneticist to be straight with me and tell me if our child's symptoms aligned with any of the possible syndromes that would be tested. She said right away that although this was in no way a diagnosis, the symptoms aligned with Trisomy 18 or Trisomy 13. When I heard Trisomy, I begin to think in terms of Down's Syndrome, which is Trisomy 21. I could handle that. There would be struggles and ups and downs, but Lincoln would be ok. Then, I don't know why, but out of my mouth came the words "what is the life expectancy?". That was the blow that really took my breath away. Often fatal. 50% die in utero. Of those that make it to birth, 50% are stillborn. Of those that live more than a day, or a week, or two weeks, 90% die before their first birthday. It was too much to take in. Looking back, I really felt like I was in the twilight zone. I think the room started spinning and everything she said was a blur. How could it be possible that the baby that I felt moving and kicking so happily inside of me might be so sick? We cried ALOT that day, but then we stood up and said enough is enough. This is our child. We love him no matter what, and we trust that God has a plan for him. No more tears. It sounds silly to think of it and even sillier to write it, but I actually laid down this law with my parents. I had cried myself out. I didn't want to live the next two weeks awaiting results in doom and gloom. I had the light of the world living in my heart, and I was going to be hopeful and in prayer about my baby. I believe God gave us medicine, but I also believe that He is the great physician, and He can heal any ill at His word. And I was gonna stand on that. I don't know how I even made it to that point, but when it came I was ready to grasp it. As a good friend would say, that is just Grace. I scoured my Bible for verses about healing, and miracles, and faith in the storms and struggles of life, but one verse kept coming back to me, and it was one that I had clung to throughout the entirety of this ordeal: Psalm 56:3 "When I am afraid, I will put my trust in you." And I was afraid. More scared than I had ever been in my life. But I knew I was in the best possible place that I could be. And in that time, in a very dark place, God granted me some peace.
The next day, we went in for the amnio. I was a little apprehensive about the procedure, but it was a piece of cake. All of the nurses seemed to smile at me a little extra brightly that day. I am not sure if they all knew the situation or if it was my imagination, but I smiled back and told them I was ok. My doctor and the ultrasound tech from the day before commented on my attitude. I told them the no cry rule (which I had to remind mom of during the procedure), and that I had a hope that was grounded on my faith in Jesus Christ. I am blessed to have doctors who are believers, and I know that they were in prayer with me for good results. The procedure took about 2 minutes, and now the wait would begin. It could be anywhere from 8 to 14 days to get results.
I got the phone call on day 10. We had been given the option to hear results by phone or get the call that they were in and drive downtown to the office. I think the drive would have been horrendous waiting and anticipating, so I chose to hear by phone. I think I knew somewhere somehow that the results weren't what I was hoping and praying for. When the call came the geneticist told me right away. I was so grateful that there weren't any ridiculous lead-ins or anecdotes, just the diagnosis. My first question after that was about gender. My initial intuition was confirmed that he was indeed a boy. Let me say that my doctor's office was incredible throughout this time. The entire staff are so empathetic and I know they truly care about me and my baby. If I wanted to come in, they would arrange it. I just needed to tell them when and where. This was a Thursday afternoon. I already had a Monday appointment scheduled, and I just needed some time to soak it all in. Besides, it wouldn't change the diagnosis. Full Trisomy 13 (47, XY, +13). In the medical world, a death sentence. In a God world, a sweet little miracle that continues to kick his mommy even as she types, who is perfect and beautiful in the eyes of his parents and his Creator, the one who made him PERFECT in all regards. A child that is making an impression upon the world already, as his story is shared with others and touches lives and hearts. A child who will leave his mark on the world regardless of the time he spends in it, as his mommy and daddy have already seen lives changed and miracles happen because of his sweet existence. It's hard to describe at this point of the story my feelings of being blessed. In my darkest hour, God reached down and blessed me. Lincoln has already taught me what it means to love truly unconditionally, to trust in God's plan, and to believe the promises that He has made to us. Every day I still pray for a miracle of healing for my son. I pray that he will be born with a perfectly matching set of 46 chromosomes in every cell. I pray that I will get to watch him grow and play with his big brother, to see him score a touchdown, to watch him graduate, get married, and have children of his own. I still pray for these things because I believe that if God intends to make that Lincoln's story, then He can. I know the reality of the situation, but I am trying not to dwell on it. I just pray for time, and what is best for my sweet boy. And that others will see that Lincoln's life is NOT in vain, and that it has a purpose and a reason. He was made PERFECT and is PERFECT. And I am anxiously awaiting the day of his birth, when I can hold him firmly in my arms and tell him how loved and cherished he is. I am blessed to be able to say that I am Lincoln's Mommy.
Friday, March 16, 2012
In the beginning...
Tommy and I were married almost 10 years ago at the tender age of 19. I honestly cannot believe that it has been that long! From the very beginning it was never a question of if we wanted children, but when we would have them. In fact, one of Tommy's "deal-breakers" was that our first son must be named Thomas (Tommy is the 4th generation of Thomas in his family). Since there is already a Thomas, Tom, and Tommy, I was adamant that the first name could be Thomas, but that he was going to go by his middle name. And so, on October 18, 2010, we were blessed by God and given Thomas Rocco Aloisi, who continues to amaze, delight, and confuse us all at the same time! However, prior to Rocco's arrival, the path to our pregnancy was not easy. After we married, we moved to Virginia Beach, VA, where Tommy was stationed with the US Navy. I was apprehensive to think about being pregnant while I was away from my family (ok, my mom especially!), and since we spent alot of time apart while he was on deployments, we decided to wait a few years to have children. Sometimes I wonder if maybe God didn't want us to wait and maybe that is why I had so many problems, but looking back I think that He knew that I would need the full emotional support of my family surrounding me when we came back to TN.
In January 2008, we started trying to conceive a pregnancy. Call it naivete, but I was just sure that it would happen right away. I had never had any kind of female problems and had very normal cycles, so I thought it was just a matter of one month and we would be expecting. After three months I did get a little upset, but then on the fourth month the magic happened, so to speak :) I will not forget the day we found out we were pregnant. I must have taken about three tests. I was elated and on cloud nine until about 5 weeks into the pregnancy, when I started spotting blood. Very disconcerting, yes, but from everything that I read this could be a normal occurrence, especially this early in the pregnancy. So we went in for our first ultrasound a few weeks later, and you can imagine our shock to learn that we were being doubly blessed with twins! However, after seeing the imagine on the screen I noticed the ultrasound tech looked a little strange. She never said anything to us except that she needed to get the doctor, which left us with a sick feeling in our stomachs. When the doctor came in, he told us that there were no heartbeats visible. Yes, we were still quite early and twins tend to grow a little slower, so he thought we should recheck in a week. We were also told at that time that we were carrying mono-mono twins, which means that the babies were in the same gestational sac and shared a placenta. This is the most risky of all twin pregnancies, as often times the babies become entangled in their own cords and oxygen deprivation occurs. We just knew that things were going to be ok and we left with a positive outlook. Besides, I continued to be very sick every morning, so we took that as a good sign. However, we returned the next week full of hopeful anticipation, and we were crushed to see no fetal heartbeats. We were devastated. A D&C was ordered and the next day I found myself in surgery, waking up to the idea that I was no longer carrying two precious lives inside of me. Because the loss was quite early and it was my first, it was looked at mainly as a "fluke". Of course you are told that a very high percentage of pregnancies end in miscarriage, and things like this just happen. Tommy and I began to think that maybe we were spared the pain of carrying these children for several months and then having something tragic happen. We were grasping for any reason as to why our babies might have been taken from us. Still, we desperately wanted children and wanted to try again right away.
Our second pregnancy was conceived three months later. We were terribly excited, and I was terribly scared. I was terrified to go to the bathroom and see blood. Then again, at approximately the same exact time frame as I lost my twins, I began to bleed. This time, there was no denying what was happening. I remember going in for bloodwork at my doctor about two days prior, and they called me back on the day of the miscarriage to let me know that my progesterone levels were low. I had to tell them that they had called too late. At this point, my resolve started to waver. I was only 25 years old and had lost two pregnancies. I began to fear that I would never be able to have children. I think it was this thought that really sent me into a tailspin. After the first miscarriage, I still believed that it was just one of those things that happened, but that I would still be a mother soon. After the second miscarriage, I sunk into a deep depression. I didn't even really realize it for several months. This happened in August, and I knew I needed a few months to process everything. After meeting again with my regular OB, we decided that we needed to be proactive in my pregnancy planning. Because of my low progesterone levels, I was prescribed Clomid (a fertility drug) that would make my eggs "healthier" each month. I was also give a blood test to check for abnormalities and several other tests to determine that I was physically capable of carrying a child...all came back normal.
Fast forward a whole year. Twelve cycles of Clomid, twelve months of massive disappointments. It's hard to describe to women who have no trouble having children what it feels like to go through infertility. And by no means am I an expert. We struggled for about 3 years before I had my son, but that is minuscule compared to the trials that some women go through. I can sympathize with their sorrows, and it breaks my heart, because I understand their hurts. Thinking that I could never have children was the absolute worst case scenario. When I was growing up, people would ask what I wanted to be....I never could decide what to do professionally, but I was always emphatic to say that I wanted to be a mommy :)
It was about this time that I decided to "take the bull by the horns" and seek out an additional opinion from a reproductive endocrinologist (fancy name for a fertility specialist). Enter Dr. Doody. Tommy and I met with him and left the office feeling positive about a potential pregnancy for the first time in two years. We had been praying so desperately for a baby. It is important to note that I fully believe that God had the power to open my womb whenever He saw fit to bless, but I also believe that he gives certain individuals the special gift of medicine to share with others, and this is their ministry. Let me say that every single one of my doctors have been wonderful, and all are believers in the Great Physician, which makes a huge difference in their outlook on patient care. So, Dr. Doody prescribes a battery of blood tests for both Tommy and me. When the results came back, we were a little surprised to learn that both of us carried something in our genetics that caused a blood clotting issue for a pregnancy (this was especially surprising for me to learn, since I had been tested at my regular OB's office). We were given the news that once I got pregnant (and I loved how Dr. Doody said that when it did happen, not if it happened), then I would have to take daily shots of blood thinner in my tummy, as well as aspirin (and that would need to happen every day for the rest of my life), as well as additional supplemental vitamins. I could have cared less what I had to do, I would have done anything to be pregnant. Since I was already on the Clomid, Dr. Doody wanted to do a progesterone test to see how my levels were without it. Apparently they were very poor, because it was determined that taking it was a necessity. It was also determined that since I had been on the Clomid for a year without a pregnancy, then I likely had "hostile cervical mucus"....REALLY? Hostile? The "bypass" around this gang of invaders that did not want me pregnant was to use intra-uterine insemination (ok folks, that is basically turkey basting!). I know this is ALOT of information and maybe too personal to share, but it is important for me to give you guys an idea of the whole process that we have been through and everything that we have to go through in order to even get pregnant in the first place. (It does have an impact on my feelings about everything.) Finally, on our third IUI procedure, we saw two pink lines on the pregnancy test :)
We were elated. Finally! And I felt like this time we were taking the right steps to try to ensure a healthy outcome. My blood was drawn 2 times a week for the first twelve weeks to check my hormone levels. The shots didn't hurt too much, but they left nasty bruises and knots on my tummy. I was thrilled to overlook these and actually wore them as a badge of honor as proof of my impending mommyhood. At 8 weeks I had another spotting scare. At this point I was beginning to think that this was just par for the course for me, but after a day it subsided and I began to feel relieved. I will never forget the first time we saw our sweet baby on ultrasound or heard his little heartbeat. Blessed does not even come close to the gratitude I felt for the opportunity to carry my sweet baby. I was gonna be a mommy! It is at this point that I was referred to a high-risk OB given my history and my blood thinning issue. This is where some of the fun starts...
Prior to being pregnant I would get so angry with women who literally could have snapped their fingers and gotten pregnant. I would hate it when people would ask how they felt and they would say "aarrgh...pregnant!" or always complain about being miserable. I would have given a kidney to be miserable! It is very hurtful to a woman experiencing infertility to hear others complain about the blessing that they are carrying, so I just tried to avoid pregnant women when possible. Mind you, at the time of my second miscarriage I was surrounded by what seemed like a baby boom. I knew greater than ten women who were pregnant, and it was difficult to see them deliver healthy babies and think I might never have one. But I digress, so back to the specialist's office. Their office is one of only two in Knoxville that is high risk, and I think they must be the only one that takes TennCare. Let me say first of all that there is nothing wrong with TennCare when it is used in the correct capacity. However, the majority of women that I see in the waiting room at my office are there for personal choices and not because their condition was medically induced...alcohol, tobacco, and smoking. It is a rare day that I don't leave the office and see at least one pregnant woman standing outside smoking. It makes me literally sick to my stomach. If some of these women didn't look so mean, I would probably have spoken my mind by this point :) Talk about difficult to comprehend and understand God's plan...women who can care less that they are carrying a child are given this greatest blessing. It confounds my mind. I truly had to give this up to God, because I really really really struggled with this one. I also pray for the nurses and doctors, because they see it and it breaks their hearts, but they are doing it for the children and the right reasons, and they are special people to be able to handle these sensitive situations.
My pregnancy with Rocco was the most joyful time of my life. I had LOTS and LOTS of complications, but nothing that affected the baby. Gestational diabetes: check! Strep B positive: check! PUPPS: check! But fast forward to October 18, 2010, the day that forever changed our lives when our sweet little ray of sunshine Thomas Rocco Aloisi was born! His birth is a little blurry for me as I was a little doped up, but I remember him being whisked immediately away and not being allowed to hold him. Rocco had aspirated meconium during the birth and had a collapsed lung. He never cried when he came out. I kept questioning why and I was told that he would be ok. An hour later and we still hadn't heard anything. I was busy sleeping off the morphine shots that I had been given, and my poor husband and mom paced the floor in the delivery room fearing the worst. Finally, Rocco was wheeled into the room in an incubator before be taken over to East Tennessee Children's Hospital. He had a chest tube and all of these wires hooked to him. We were so scared but relieved to see him stabilized. Rocco was a little fighter, and did extremely well in recovery. We still had to stay a week in the NICU for IV antibiotics, but it was a joyful day when he received a clean bill of health and we took him home.
Rocco was actually a wonderful baby. No, he didn't sleep through the night until he was about 15 months old!, but he was literally one of the happiest babies I had ever seen. He wasn't one to whine or cry alot, and we just felt so blessed to have a healthy and happy child. It wasn't very long before his loving nature made us start to want another baby. Why not, he needed a playmate, and we wanted our children to be close in age so that they could grow up together and be best friends. So when Rocco was about nine months old, we decided to start the fertility process once more. I figured "Hey, this will be a piece of cake. They know what is wrong with me and how to fix it so that I can carry to term, so we've got this!". On our third round of IUI, the positive result appeared. I went in for my requisite bloodwork and the pregnancy was confirmed. A few days later I went back for more bloodwork. This time, they called with not so good news. My progesterone levels had dropped dramatically (basically, they were at a level that said I wasn't pregnant), so I should expect what was coming. Again?! Surely this isn't happening again! The two days that I had to wait between the phone call and the bleeding began were horrible. I thought "well, maybe they are wrong", but I couldn't help but feel the tell-tale cramping in my lower back. After this happened, I spoke with the nurse who said that they didn't believe that this miscarriage had anything to do with my "problems", but again, I was probably just one of the statistics. Here we go again...
It's funny, because although I was still crushed after another loss (I now have four sweet angels in Heaven), this one was easier to swallow than the others. I knew that I could get pregnant and carry to term, as Rocco was the perfect example of that fact. And this time I didn't have to fear that I would never be a mommy, and I had a beautiful baby boy. I kept my head up, and we moved forward with trying again.
With the second round of IUI following the miscarriage, another positive pregnancy test! This was my fifth pregnancy, and so far I had one beautiful and healthy baby and four angels in Heaven. We prayed fervently for a healthy baby and a healthy pregnancy, and had no reason to believe that this wouldn't be the case. Most people will find that hard to believe after three lost pregnancies, but I had an almost childlike faith and trust in God when it came to this topic. I think I probably thought that after all that I had been through with the infertility process and the problems of Rocco's pregnancy that I had "paid my dues", so to speak. I can't begin to tell you how many people would comment on the fact that I was due to have an easy pregnancy this time. And honestly, I had to agree. I did deserve that. And more. Or so I thought. God was quick to let me know that my plans are not always His. In the coming weeks, my faith would start to mature and blossom in a way that I had never experienced before. I began to see that what I want is not always what He has in store, but that He will stand by me throughout the process. I began to understand what it meant to walk with Him through the storms of life and still be able to praise His name and glorify Him. And it is with this knowledge that the full story of Lincoln Alan Aloisi begins...may God be glorified in his sweet life and may His love be known among all that Lincoln's story will touch.
In January 2008, we started trying to conceive a pregnancy. Call it naivete, but I was just sure that it would happen right away. I had never had any kind of female problems and had very normal cycles, so I thought it was just a matter of one month and we would be expecting. After three months I did get a little upset, but then on the fourth month the magic happened, so to speak :) I will not forget the day we found out we were pregnant. I must have taken about three tests. I was elated and on cloud nine until about 5 weeks into the pregnancy, when I started spotting blood. Very disconcerting, yes, but from everything that I read this could be a normal occurrence, especially this early in the pregnancy. So we went in for our first ultrasound a few weeks later, and you can imagine our shock to learn that we were being doubly blessed with twins! However, after seeing the imagine on the screen I noticed the ultrasound tech looked a little strange. She never said anything to us except that she needed to get the doctor, which left us with a sick feeling in our stomachs. When the doctor came in, he told us that there were no heartbeats visible. Yes, we were still quite early and twins tend to grow a little slower, so he thought we should recheck in a week. We were also told at that time that we were carrying mono-mono twins, which means that the babies were in the same gestational sac and shared a placenta. This is the most risky of all twin pregnancies, as often times the babies become entangled in their own cords and oxygen deprivation occurs. We just knew that things were going to be ok and we left with a positive outlook. Besides, I continued to be very sick every morning, so we took that as a good sign. However, we returned the next week full of hopeful anticipation, and we were crushed to see no fetal heartbeats. We were devastated. A D&C was ordered and the next day I found myself in surgery, waking up to the idea that I was no longer carrying two precious lives inside of me. Because the loss was quite early and it was my first, it was looked at mainly as a "fluke". Of course you are told that a very high percentage of pregnancies end in miscarriage, and things like this just happen. Tommy and I began to think that maybe we were spared the pain of carrying these children for several months and then having something tragic happen. We were grasping for any reason as to why our babies might have been taken from us. Still, we desperately wanted children and wanted to try again right away.
Our second pregnancy was conceived three months later. We were terribly excited, and I was terribly scared. I was terrified to go to the bathroom and see blood. Then again, at approximately the same exact time frame as I lost my twins, I began to bleed. This time, there was no denying what was happening. I remember going in for bloodwork at my doctor about two days prior, and they called me back on the day of the miscarriage to let me know that my progesterone levels were low. I had to tell them that they had called too late. At this point, my resolve started to waver. I was only 25 years old and had lost two pregnancies. I began to fear that I would never be able to have children. I think it was this thought that really sent me into a tailspin. After the first miscarriage, I still believed that it was just one of those things that happened, but that I would still be a mother soon. After the second miscarriage, I sunk into a deep depression. I didn't even really realize it for several months. This happened in August, and I knew I needed a few months to process everything. After meeting again with my regular OB, we decided that we needed to be proactive in my pregnancy planning. Because of my low progesterone levels, I was prescribed Clomid (a fertility drug) that would make my eggs "healthier" each month. I was also give a blood test to check for abnormalities and several other tests to determine that I was physically capable of carrying a child...all came back normal.
Fast forward a whole year. Twelve cycles of Clomid, twelve months of massive disappointments. It's hard to describe to women who have no trouble having children what it feels like to go through infertility. And by no means am I an expert. We struggled for about 3 years before I had my son, but that is minuscule compared to the trials that some women go through. I can sympathize with their sorrows, and it breaks my heart, because I understand their hurts. Thinking that I could never have children was the absolute worst case scenario. When I was growing up, people would ask what I wanted to be....I never could decide what to do professionally, but I was always emphatic to say that I wanted to be a mommy :)
It was about this time that I decided to "take the bull by the horns" and seek out an additional opinion from a reproductive endocrinologist (fancy name for a fertility specialist). Enter Dr. Doody. Tommy and I met with him and left the office feeling positive about a potential pregnancy for the first time in two years. We had been praying so desperately for a baby. It is important to note that I fully believe that God had the power to open my womb whenever He saw fit to bless, but I also believe that he gives certain individuals the special gift of medicine to share with others, and this is their ministry. Let me say that every single one of my doctors have been wonderful, and all are believers in the Great Physician, which makes a huge difference in their outlook on patient care. So, Dr. Doody prescribes a battery of blood tests for both Tommy and me. When the results came back, we were a little surprised to learn that both of us carried something in our genetics that caused a blood clotting issue for a pregnancy (this was especially surprising for me to learn, since I had been tested at my regular OB's office). We were given the news that once I got pregnant (and I loved how Dr. Doody said that when it did happen, not if it happened), then I would have to take daily shots of blood thinner in my tummy, as well as aspirin (and that would need to happen every day for the rest of my life), as well as additional supplemental vitamins. I could have cared less what I had to do, I would have done anything to be pregnant. Since I was already on the Clomid, Dr. Doody wanted to do a progesterone test to see how my levels were without it. Apparently they were very poor, because it was determined that taking it was a necessity. It was also determined that since I had been on the Clomid for a year without a pregnancy, then I likely had "hostile cervical mucus"....REALLY? Hostile? The "bypass" around this gang of invaders that did not want me pregnant was to use intra-uterine insemination (ok folks, that is basically turkey basting!). I know this is ALOT of information and maybe too personal to share, but it is important for me to give you guys an idea of the whole process that we have been through and everything that we have to go through in order to even get pregnant in the first place. (It does have an impact on my feelings about everything.) Finally, on our third IUI procedure, we saw two pink lines on the pregnancy test :)
We were elated. Finally! And I felt like this time we were taking the right steps to try to ensure a healthy outcome. My blood was drawn 2 times a week for the first twelve weeks to check my hormone levels. The shots didn't hurt too much, but they left nasty bruises and knots on my tummy. I was thrilled to overlook these and actually wore them as a badge of honor as proof of my impending mommyhood. At 8 weeks I had another spotting scare. At this point I was beginning to think that this was just par for the course for me, but after a day it subsided and I began to feel relieved. I will never forget the first time we saw our sweet baby on ultrasound or heard his little heartbeat. Blessed does not even come close to the gratitude I felt for the opportunity to carry my sweet baby. I was gonna be a mommy! It is at this point that I was referred to a high-risk OB given my history and my blood thinning issue. This is where some of the fun starts...
Prior to being pregnant I would get so angry with women who literally could have snapped their fingers and gotten pregnant. I would hate it when people would ask how they felt and they would say "aarrgh...pregnant!" or always complain about being miserable. I would have given a kidney to be miserable! It is very hurtful to a woman experiencing infertility to hear others complain about the blessing that they are carrying, so I just tried to avoid pregnant women when possible. Mind you, at the time of my second miscarriage I was surrounded by what seemed like a baby boom. I knew greater than ten women who were pregnant, and it was difficult to see them deliver healthy babies and think I might never have one. But I digress, so back to the specialist's office. Their office is one of only two in Knoxville that is high risk, and I think they must be the only one that takes TennCare. Let me say first of all that there is nothing wrong with TennCare when it is used in the correct capacity. However, the majority of women that I see in the waiting room at my office are there for personal choices and not because their condition was medically induced...alcohol, tobacco, and smoking. It is a rare day that I don't leave the office and see at least one pregnant woman standing outside smoking. It makes me literally sick to my stomach. If some of these women didn't look so mean, I would probably have spoken my mind by this point :) Talk about difficult to comprehend and understand God's plan...women who can care less that they are carrying a child are given this greatest blessing. It confounds my mind. I truly had to give this up to God, because I really really really struggled with this one. I also pray for the nurses and doctors, because they see it and it breaks their hearts, but they are doing it for the children and the right reasons, and they are special people to be able to handle these sensitive situations.
My pregnancy with Rocco was the most joyful time of my life. I had LOTS and LOTS of complications, but nothing that affected the baby. Gestational diabetes: check! Strep B positive: check! PUPPS: check! But fast forward to October 18, 2010, the day that forever changed our lives when our sweet little ray of sunshine Thomas Rocco Aloisi was born! His birth is a little blurry for me as I was a little doped up, but I remember him being whisked immediately away and not being allowed to hold him. Rocco had aspirated meconium during the birth and had a collapsed lung. He never cried when he came out. I kept questioning why and I was told that he would be ok. An hour later and we still hadn't heard anything. I was busy sleeping off the morphine shots that I had been given, and my poor husband and mom paced the floor in the delivery room fearing the worst. Finally, Rocco was wheeled into the room in an incubator before be taken over to East Tennessee Children's Hospital. He had a chest tube and all of these wires hooked to him. We were so scared but relieved to see him stabilized. Rocco was a little fighter, and did extremely well in recovery. We still had to stay a week in the NICU for IV antibiotics, but it was a joyful day when he received a clean bill of health and we took him home.
Rocco was actually a wonderful baby. No, he didn't sleep through the night until he was about 15 months old!, but he was literally one of the happiest babies I had ever seen. He wasn't one to whine or cry alot, and we just felt so blessed to have a healthy and happy child. It wasn't very long before his loving nature made us start to want another baby. Why not, he needed a playmate, and we wanted our children to be close in age so that they could grow up together and be best friends. So when Rocco was about nine months old, we decided to start the fertility process once more. I figured "Hey, this will be a piece of cake. They know what is wrong with me and how to fix it so that I can carry to term, so we've got this!". On our third round of IUI, the positive result appeared. I went in for my requisite bloodwork and the pregnancy was confirmed. A few days later I went back for more bloodwork. This time, they called with not so good news. My progesterone levels had dropped dramatically (basically, they were at a level that said I wasn't pregnant), so I should expect what was coming. Again?! Surely this isn't happening again! The two days that I had to wait between the phone call and the bleeding began were horrible. I thought "well, maybe they are wrong", but I couldn't help but feel the tell-tale cramping in my lower back. After this happened, I spoke with the nurse who said that they didn't believe that this miscarriage had anything to do with my "problems", but again, I was probably just one of the statistics. Here we go again...
It's funny, because although I was still crushed after another loss (I now have four sweet angels in Heaven), this one was easier to swallow than the others. I knew that I could get pregnant and carry to term, as Rocco was the perfect example of that fact. And this time I didn't have to fear that I would never be a mommy, and I had a beautiful baby boy. I kept my head up, and we moved forward with trying again.
With the second round of IUI following the miscarriage, another positive pregnancy test! This was my fifth pregnancy, and so far I had one beautiful and healthy baby and four angels in Heaven. We prayed fervently for a healthy baby and a healthy pregnancy, and had no reason to believe that this wouldn't be the case. Most people will find that hard to believe after three lost pregnancies, but I had an almost childlike faith and trust in God when it came to this topic. I think I probably thought that after all that I had been through with the infertility process and the problems of Rocco's pregnancy that I had "paid my dues", so to speak. I can't begin to tell you how many people would comment on the fact that I was due to have an easy pregnancy this time. And honestly, I had to agree. I did deserve that. And more. Or so I thought. God was quick to let me know that my plans are not always His. In the coming weeks, my faith would start to mature and blossom in a way that I had never experienced before. I began to see that what I want is not always what He has in store, but that He will stand by me throughout the process. I began to understand what it meant to walk with Him through the storms of life and still be able to praise His name and glorify Him. And it is with this knowledge that the full story of Lincoln Alan Aloisi begins...may God be glorified in his sweet life and may His love be known among all that Lincoln's story will touch.
Thursday, March 15, 2012
What is a legacy?
The name Lincoln's Legacy just came to me one night (ok, so it was definitely God given!) when I first contemplated blogging to share with our friends and family this journey that we have begun. I realize the title might take some of you aback...by definition, a legacy is: a gift of personal property (a bequest); anything handed down from the past. By no means does this signify my lack of hope in this situation. Rather, I believe that each day that we live we are adding to our own legacies. Some of us might want our legacy to be things accomplished in our jobs, some might want others to remember our kindness or generosity, but all of us make choices everyday that add to our legacies. And Lincoln is no exception...
Lincoln Alan Aloisi's legacy began the day he was conceived. From that moment forward, he has been changing lives for the better. (Although this blog is not meant to be a political statement, I am going to give my opinions, so consider this your disclaimer.) My husband Tommy and I strongly believe that life begins at conception. I don't know how anyone could look at an ultrasound of a five week old baby and see it's tiny heart beating and not know that life is sustained in the womb. And from the moment of my positive pregnancy test, Tommy and I looked forward to the blessing of a new baby, and our lives were already changed. We were no longer going to be a little unit of three (with Rocco, our 17 month old son), but we were going to grow again in love. And thus Lincoln's footprints were already etched on our hearts forever. He has already taught us what it means to love unconditionally, hope eternally, and put our trust in the hands of our Heavenly Father, whose plans may not be our own but are ultimately in our best interests forever. Bless the Lord for giving me the courage to start believing that these last few weeks! And so the legacy of Lincoln began, and will continue, from now until eternity...
Lincoln Alan Aloisi's legacy began the day he was conceived. From that moment forward, he has been changing lives for the better. (Although this blog is not meant to be a political statement, I am going to give my opinions, so consider this your disclaimer.) My husband Tommy and I strongly believe that life begins at conception. I don't know how anyone could look at an ultrasound of a five week old baby and see it's tiny heart beating and not know that life is sustained in the womb. And from the moment of my positive pregnancy test, Tommy and I looked forward to the blessing of a new baby, and our lives were already changed. We were no longer going to be a little unit of three (with Rocco, our 17 month old son), but we were going to grow again in love. And thus Lincoln's footprints were already etched on our hearts forever. He has already taught us what it means to love unconditionally, hope eternally, and put our trust in the hands of our Heavenly Father, whose plans may not be our own but are ultimately in our best interests forever. Bless the Lord for giving me the courage to start believing that these last few weeks! And so the legacy of Lincoln began, and will continue, from now until eternity...
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