First off I just want to say that writing and sharing my first post was an awesome feeling. I no longer had to keep to myself what I had been keeping for the last month, which felt like forever. I now feel set free and am able to move forward/face on challenges that may come our way. Thank you all again for your kind words and support.
Yesterday when meeting with a very nice nutritionist who asked me why I was no longer breastfeeding, I shared with her that our son was diagnosed with Down's Syndrome and after he was released from the hospital we did a lot of running around seeing different specialist which did not allow me the time to pump. I told her I believe the stress that I was dealing with at the time did not allow me to produce enough milk. (In order to produce enough milk, one needs to be in a stress free environment and relaxed). The nutritionist was sympathetic and asked me a question that blew me away. She asked " So what are you going to do? Are you going to keep him or are you going to give him away"? I was thinking HUH?! I've had him for more than a month, how in the world would I just give my child away? No offense to mothers who have given their child up for adoption. I m not judging anyone because everyone has their reasons. I just cant imagine after a mom has spent a month or so with her child that she would give her child away. Especially just because he has Down's Syndrome.
When I was pregnant I had two dogs. Petey which everyone knows is my baby and Max that I had adopted for just a few months. When I found out I was pregnant, I realized there was just no way I would be able to care for a baby as well as two dogs. So I made the painful decision to give Max up. I cried for several days, just thinking about how he must feel I abandoned him. So of course there is no way in the world, I would give my child away. I have been blessed with such a beautiful child who has taught me so much in just one month. I know for sure he will continue to teach me and others for the rest of our lives.
After I came home. I met with a social worker from an Early Intervention program. She paid us a visit to provide us with information on different services that they provide for children with disabilities. A program that will evaluate and identify whether there are any physical or developmental issues. She was so nice. It was as if I had known her for some time. Many people that know me, know that it sometimes takes me time to warm up to a person. But not this time, I was so comfortable with this woman. I felt like God sent her to us for a reason. I shared with her that I was also a social worker but not licensed yet. She was amazed. I am not sure why she was amazed though. But her response was "Wow you have a story"! I thought that was funny how I had just shared birth story earlier and here I have a woman who did not know tell me I had a story. I also realized after she left, that another reason why I was blessed with Aiden is because I am a social worker. A person who lives to assist others to achieve their full potential and allow them the ability to become productive citizens. I was supposed to have Aiden!
Later in the evening my cousin in California posted on her facebook status that after she read my blog she was emotionally exhausted and needed alone time to think about all the BS that life brings. After all the wonderful comments and support that I had received emphasizing my ability to care of my son regardless of his disability. I had to respond and correct my cousin. My response to her was " You mean all the BS that people bring to life. Life is what you make it".
Someone shared this with me and I thought it was fitting for this post.
http://www.ndsccenter.org/resources/package1.php
Wednesday, September 21, 2011
Tuesday, September 20, 2011
Aiden Miguel: The Birth Story of Our First Child
December 31, 2010.
I took a pregnancy test and it came out positive. Although I was happy at the thought of having my first child which was unexpected by the way, I began to worry about my new job. After two years of looking for work, I had just landed this job in October. I had only been working for almost 3 months. My first month of being pregnant was pretty rough, having morning sickness as well as the flu which caused me to take sick days which I had not even accrued yet. Eventually I came to the decision of resigning and stayed home. While staying home, all I did was fantasize about how much fun it would be to have child, about the kind of life we would give our child and how we would try our best to provide the best life for our child, how I had hoped my child would look like me, learn sign language and hopefully not give mommy a hard time. :)
August 14, 2011
After two days of experiencing mild contractions which were 7 minutes apart, I decided it was time to go to the hospital. My family was so excited, my mom, two sisters and two nieces were determined to share this special moment with us so they came along. They were okay with knowing that they would probably be waiting for hours before the baby came. It was a happy time for them so time was not of the essence. After being examined and to my disappointment, I was sent home because I was only 3 centimeters. But I was still having contractions which got worse as the hours passed. I tried so hard to sleep and get my rest knowing that I would need my energy for when the baby was ready to come. But the pain was so bad I could not sleep, my fiance Jorge had to wake up to rub my back every time a contraction came. By 6:30 I cried in so much pain and decided it was time to go back to the hospital.
August 15, 2011
By 8:00 am, I was 4 centimeters and admitted. What a relief it was for us. The contractions kept coming on but It was not coming fast enough and I was not really dilating. By 10 am, The Doctor checked me and I was 5 centimeters. By then I could no longer tolerate the pain and asked for an Epidural. At 1 pm the doctor checked me again and I was still 5 centimeters. The Doctor decided it was time to induce my labor so he broke my water and gave me an IV with meds that made my contractions came on faster and I began to dilate. Oh the pain! The epidural was helpful but it does not take away all of the pain. I still had to brace myself for painful contractions that lasted a minute or two every time.
4:30 pm. the Dr. checked me and I was finally at 10 centimeters. It was time to deliver our child which by the way we didnt know was a girl or boy. So the anticipation was getting stronger and stronger. It was time to find out whether we were blessed with a healthy girl or boy. We had already had two awesome names picked and was ready to name our child. My fiance and two sisters were the only ones allowed to stay in the room while I delivered. Having pushed for only 10 minutes the babys head began to show, causing everyone to swell with excitement. My sister Norma said to me "the baby has alot of hair!" The baby is coming! The baby is coming! Next thing you know, at 5:05 pm out came a loud screaming 8 lb, 1 oz. 19 1/2 inches baby boy! We named him Aiden Miguel. His middle name being his grandfathers first name (my dad).
Jorge looked at me with so much pride and said its a boy and we both cried tears of joy. Having gone through so much pain and not having enough rest, I was happy but also relieved it was finally over. By the time our Aiden was cleaned, wrapped and handed to me. I looked at my now quiet child with a red face and chinky eyes and thought aww his eyes are swollen. I did not have the energy nor did I think much of what our son looked like. I began to feel very light headed. I could no longer keep my head up. I held Aiden for what felt like two minutes and asked that he be taken away because I was afraid I was going to drop him. I needed to rest my head and eyes. I felt so dizzy, I thought I was going to go to sleep and never wake up again. The nurse took my temperature and discovered I had a fever. My heart was also beating unusually fast. The doctor instructed the nurse to keep me and continue to monitor me in the delivery room while our Aiden was taken away and being cared for at the nursery.
At around 8-9:00 pm. A doctor who introduced himself as the pediatric doctor working the evening shift at the nursery came in our room and sat down on a stool. My having a fever and still feeling light headed tried my best to understand when he spoke. It seemed the only thing I understood was, your child has the features of a child with Down's Syndrome. That's all I understood. Everything from that point on was a big blur. I remember my heart sinking and thinking to myself "who the hell is this man"? "He doesn't know what he's talking about". "It's just not possible". "Maybe he examined the wrong baby"? "I took the blood test and it came back negative for Down's Syndrome".
"This is some kind of mistake". My mind was running 100 mph with many reasons why it just could not be possible. Jorge did most of the talking with the doctor. The doctor said the only way to confirm would be to do blood work on the baby and left. I immediately broke down crying and apologize to Jorge for having created a child who might have Down's Syndrome and for disappointing him. He too broke down and cried with me and reassured that I was not at fault and that we both created this baby.
I was taken to my room at 10 pm and was told that Aiden was transferred to the Neonatal Intensive Care Unit (NICU) because his breathing was labored and needed to be monitored. I was so tired, all I wanted was sleep. I laid in my bed as Jorge sat in a recliner next to me. He rested his eyes and was fast asleep. Even though I was tired, I was still in shock. I took my Iphone and began to read up on the features of Down's Syndrome. I still had not been able to see my baby after I delivered so I could not tell if he had the features I was now reading about. All I knew was that there were was something different about his eyes. Deep down I prayed that when I saw him again, his eyes would look better and we would prove the doctor wrong. Even though Jorge was in the room with me, I felt so alone. I never imagined that my first night as a mommy would be like this. Instead of happiness and joy, I was sad and worried. It was so hard. My eyes began to become heavy and I could no longer fight the tiredness. I cried myself to sleep.
The next morning, I was still tired. The nurse took my blood and said my blood count was very low that I needed to stay in bed and get my rest. The nurse said " Let daddy go see the baby, you need to rest". I stayed in bed being hooked up to an IV and antibiotics because of my fever. By 2:00 pm. I was determined to get out of bed and go see my son even if i had to drag the IV bags with me. Jorge and I went to the NICU. There was our son in an incubator breathing hard with tubes in his nose. I was so numb, I did not know what to feel at the moment. For a brief moment I felt like he was not mine. It felt like a dream. The nurse caring for our son came to us and shared with us that he was breathing hard because he swallowed fluid and needed to be hooked up to oxygen. He was also jaundiced and had to be under the special light.
Again more information about our son was being shared and I could not understand what was being said without a sign language interpreter. Why did I not request an interpreter, I do not know. The Michelle who many know to be a strong advocate for Deaf people would have requested an interpreter was missing somewhere. She was physically present but not emotionally nor mentally. However Jorge was the opposite, he was really involved and fearlessly asked questions to whether it was the doctor, nurse or interns. He wanted to know everything there was to know. He asked to speak with the NICU doctor and asked the doctor to explain why our son is in NICU. The doctor explained that not only was he not breathing properly, he was also not eating because he did not know how to latch on to the bottle's nipple. The doctor also explained that Aiden was seen by the cardiologist and that he has a small hole in his heart. The doctor pointed out that these are all common complications of a child with Down's Syndrome. Jorge asked the doctor what are the chances of him not having Down's Syndrome. The doctor said it was a 90 percent chance that with all the features and complications, he will be diagnosed with Down's Syndrome. After the doctor walked away, It felt like our world was falling apart. Our dreams of having the "perfect" child were crushed. We sat next to our son in his incubator and cried in each others arms, discussing how we were handed an unfair deal, especially since Aiden was our first child and we had brothers and sisters who all had "normal" healthy kids. "Why us?" we asked.
After letting our feelings out. A nurse came to us and reassured us that it would be okay. That even though individuals with Down's Syndrome often have limitations there are several services available and most with the proper service they often lead independent lives. Many often go to regular schools, sometimes graduate from high school or college and even go out and date. She assured us that there are so many possibilities out there and that we should enjoy our beautiful child. That everything will be okay. She then offered to take a picture of us.
Just a little while afterwards, my mom and sister Norma came to visit. My mom must have seen the despair in my face and asked how are you? I said "I am okay, doctor said maybe Down Syndrome" My mom said "Really? I felt it too. When he was born I thought he looked strange but I did not say anything". This was when I thought to myself, wow I wonder how many other people were able to see it. How was it possible that we his parents did not see it? But then I came to the conclusion, that the reason why we did not see it is because we were not supposed to. We (parents) are supposed to see beyond our child's differences. We are supposed to look at our child as if they are perfect and EMBRACE our child's every being.
Aiden spent 6 days in NICU. Jorge and I went to the hospital every day and spent several late nights with our son. Leaving our child was the hardest thing to do. We prayed everyday that he would get better fast and come home where he belonged. On Sunday August 21st, we received the best news in days. The doctor called us and said our baby could now come home. His breathing was back to normal, he learned to eat in two days, his blood count went from being 38,000 to 55,000 (ideally a normal count would be in the 100's) and his jaundice was gone. We were so thrilled we were bringing our baby home.
Aiden was welcome home by awesome family and friends. He was showered with so much love. Over the course of two weeks Jorge was amazed how many people wanted to come and pay our son a visit.
Two weeks after he came home, we went to see several specialists to follow up on all his complications. The blood specialist examined Aiden's body and was amazed how he was able to roll to his side and move so much. He even said a diagnosis of Down's Syndrome was questionable. His blood result showed that his blood count had rose from 55,000 to 168,000. Thank you Lord. A few days later Aiden went to see a cardiologist. The cardiologist said after doing an EEG of Aiden's heart and by the grace of God, he had no hole in his heart. His heart was so strong and that he would not need to go back to see the doctor again. However his blood results from genetics came back. After waiting almost 3 weeks, the pediatric doctor called us to confirm that our son does have an extra chromosome and has Down's Syndrome. Although we had hoped for a different result, by this time we had already realized we have been blessed with a healthy child who is strong and is a fighter. We could not ask for anything more. We LOVE and EMBRACE our little Aiden Miguel.
I took a pregnancy test and it came out positive. Although I was happy at the thought of having my first child which was unexpected by the way, I began to worry about my new job. After two years of looking for work, I had just landed this job in October. I had only been working for almost 3 months. My first month of being pregnant was pretty rough, having morning sickness as well as the flu which caused me to take sick days which I had not even accrued yet. Eventually I came to the decision of resigning and stayed home. While staying home, all I did was fantasize about how much fun it would be to have child, about the kind of life we would give our child and how we would try our best to provide the best life for our child, how I had hoped my child would look like me, learn sign language and hopefully not give mommy a hard time. :)
August 14, 2011
After two days of experiencing mild contractions which were 7 minutes apart, I decided it was time to go to the hospital. My family was so excited, my mom, two sisters and two nieces were determined to share this special moment with us so they came along. They were okay with knowing that they would probably be waiting for hours before the baby came. It was a happy time for them so time was not of the essence. After being examined and to my disappointment, I was sent home because I was only 3 centimeters. But I was still having contractions which got worse as the hours passed. I tried so hard to sleep and get my rest knowing that I would need my energy for when the baby was ready to come. But the pain was so bad I could not sleep, my fiance Jorge had to wake up to rub my back every time a contraction came. By 6:30 I cried in so much pain and decided it was time to go back to the hospital.
August 15, 2011
4:30 pm. the Dr. checked me and I was finally at 10 centimeters. It was time to deliver our child which by the way we didnt know was a girl or boy. So the anticipation was getting stronger and stronger. It was time to find out whether we were blessed with a healthy girl or boy. We had already had two awesome names picked and was ready to name our child. My fiance and two sisters were the only ones allowed to stay in the room while I delivered. Having pushed for only 10 minutes the babys head began to show, causing everyone to swell with excitement. My sister Norma said to me "the baby has alot of hair!" The baby is coming! The baby is coming! Next thing you know, at 5:05 pm out came a loud screaming 8 lb, 1 oz. 19 1/2 inches baby boy! We named him Aiden Miguel. His middle name being his grandfathers first name (my dad).
Jorge looked at me with so much pride and said its a boy and we both cried tears of joy. Having gone through so much pain and not having enough rest, I was happy but also relieved it was finally over. By the time our Aiden was cleaned, wrapped and handed to me. I looked at my now quiet child with a red face and chinky eyes and thought aww his eyes are swollen. I did not have the energy nor did I think much of what our son looked like. I began to feel very light headed. I could no longer keep my head up. I held Aiden for what felt like two minutes and asked that he be taken away because I was afraid I was going to drop him. I needed to rest my head and eyes. I felt so dizzy, I thought I was going to go to sleep and never wake up again. The nurse took my temperature and discovered I had a fever. My heart was also beating unusually fast. The doctor instructed the nurse to keep me and continue to monitor me in the delivery room while our Aiden was taken away and being cared for at the nursery.
At around 8-9:00 pm. A doctor who introduced himself as the pediatric doctor working the evening shift at the nursery came in our room and sat down on a stool. My having a fever and still feeling light headed tried my best to understand when he spoke. It seemed the only thing I understood was, your child has the features of a child with Down's Syndrome. That's all I understood. Everything from that point on was a big blur. I remember my heart sinking and thinking to myself "who the hell is this man"? "He doesn't know what he's talking about". "It's just not possible". "Maybe he examined the wrong baby"? "I took the blood test and it came back negative for Down's Syndrome".
"This is some kind of mistake". My mind was running 100 mph with many reasons why it just could not be possible. Jorge did most of the talking with the doctor. The doctor said the only way to confirm would be to do blood work on the baby and left. I immediately broke down crying and apologize to Jorge for having created a child who might have Down's Syndrome and for disappointing him. He too broke down and cried with me and reassured that I was not at fault and that we both created this baby.
I was taken to my room at 10 pm and was told that Aiden was transferred to the Neonatal Intensive Care Unit (NICU) because his breathing was labored and needed to be monitored. I was so tired, all I wanted was sleep. I laid in my bed as Jorge sat in a recliner next to me. He rested his eyes and was fast asleep. Even though I was tired, I was still in shock. I took my Iphone and began to read up on the features of Down's Syndrome. I still had not been able to see my baby after I delivered so I could not tell if he had the features I was now reading about. All I knew was that there were was something different about his eyes. Deep down I prayed that when I saw him again, his eyes would look better and we would prove the doctor wrong. Even though Jorge was in the room with me, I felt so alone. I never imagined that my first night as a mommy would be like this. Instead of happiness and joy, I was sad and worried. It was so hard. My eyes began to become heavy and I could no longer fight the tiredness. I cried myself to sleep.
The next morning, I was still tired. The nurse took my blood and said my blood count was very low that I needed to stay in bed and get my rest. The nurse said " Let daddy go see the baby, you need to rest". I stayed in bed being hooked up to an IV and antibiotics because of my fever. By 2:00 pm. I was determined to get out of bed and go see my son even if i had to drag the IV bags with me. Jorge and I went to the NICU. There was our son in an incubator breathing hard with tubes in his nose. I was so numb, I did not know what to feel at the moment. For a brief moment I felt like he was not mine. It felt like a dream. The nurse caring for our son came to us and shared with us that he was breathing hard because he swallowed fluid and needed to be hooked up to oxygen. He was also jaundiced and had to be under the special light.
Again more information about our son was being shared and I could not understand what was being said without a sign language interpreter. Why did I not request an interpreter, I do not know. The Michelle who many know to be a strong advocate for Deaf people would have requested an interpreter was missing somewhere. She was physically present but not emotionally nor mentally. However Jorge was the opposite, he was really involved and fearlessly asked questions to whether it was the doctor, nurse or interns. He wanted to know everything there was to know. He asked to speak with the NICU doctor and asked the doctor to explain why our son is in NICU. The doctor explained that not only was he not breathing properly, he was also not eating because he did not know how to latch on to the bottle's nipple. The doctor also explained that Aiden was seen by the cardiologist and that he has a small hole in his heart. The doctor pointed out that these are all common complications of a child with Down's Syndrome. Jorge asked the doctor what are the chances of him not having Down's Syndrome. The doctor said it was a 90 percent chance that with all the features and complications, he will be diagnosed with Down's Syndrome. After the doctor walked away, It felt like our world was falling apart. Our dreams of having the "perfect" child were crushed. We sat next to our son in his incubator and cried in each others arms, discussing how we were handed an unfair deal, especially since Aiden was our first child and we had brothers and sisters who all had "normal" healthy kids. "Why us?" we asked.
After letting our feelings out. A nurse came to us and reassured us that it would be okay. That even though individuals with Down's Syndrome often have limitations there are several services available and most with the proper service they often lead independent lives. Many often go to regular schools, sometimes graduate from high school or college and even go out and date. She assured us that there are so many possibilities out there and that we should enjoy our beautiful child. That everything will be okay. She then offered to take a picture of us.
Just a little while afterwards, my mom and sister Norma came to visit. My mom must have seen the despair in my face and asked how are you? I said "I am okay, doctor said maybe Down Syndrome" My mom said "Really? I felt it too. When he was born I thought he looked strange but I did not say anything". This was when I thought to myself, wow I wonder how many other people were able to see it. How was it possible that we his parents did not see it? But then I came to the conclusion, that the reason why we did not see it is because we were not supposed to. We (parents) are supposed to see beyond our child's differences. We are supposed to look at our child as if they are perfect and EMBRACE our child's every being.
Aiden spent 6 days in NICU. Jorge and I went to the hospital every day and spent several late nights with our son. Leaving our child was the hardest thing to do. We prayed everyday that he would get better fast and come home where he belonged. On Sunday August 21st, we received the best news in days. The doctor called us and said our baby could now come home. His breathing was back to normal, he learned to eat in two days, his blood count went from being 38,000 to 55,000 (ideally a normal count would be in the 100's) and his jaundice was gone. We were so thrilled we were bringing our baby home.
Aiden was welcome home by awesome family and friends. He was showered with so much love. Over the course of two weeks Jorge was amazed how many people wanted to come and pay our son a visit.
Two weeks after he came home, we went to see several specialists to follow up on all his complications. The blood specialist examined Aiden's body and was amazed how he was able to roll to his side and move so much. He even said a diagnosis of Down's Syndrome was questionable. His blood result showed that his blood count had rose from 55,000 to 168,000. Thank you Lord. A few days later Aiden went to see a cardiologist. The cardiologist said after doing an EEG of Aiden's heart and by the grace of God, he had no hole in his heart. His heart was so strong and that he would not need to go back to see the doctor again. However his blood results from genetics came back. After waiting almost 3 weeks, the pediatric doctor called us to confirm that our son does have an extra chromosome and has Down's Syndrome. Although we had hoped for a different result, by this time we had already realized we have been blessed with a healthy child who is strong and is a fighter. We could not ask for anything more. We LOVE and EMBRACE our little Aiden Miguel.
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| The day Titi Gina was going home. Aiden and I were sad to see her leave. :( |
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