Robins Fam: Porter Joe

Welcome to the World Porter Joe Robins

Our sweet boy was born after 8 hours of labor on January 15, 2010 at 8 pounds 7 ounces and 19 inches long.

I've debated telling Porters story and what we have been going through, but have felt strongly that I need to. I have many friends that are not religious, many that read this blog, this post can not be written without acknowledging Gods hand in my life. I also worry about the prejudices and assumptions that are out there, how quickly people can judge. I realize this is something we will be dealing with throughout our whole lives, more so something Porter is going to have to deal with.

It all started with Brody's birth ..... When Brody was born I remember it clearly, they put Brody on my stomach and I was admiring and being shocked (those who know Brody's birth story know why) by my handsome second son. As they took him away I was told, "There is another boy coming" I remember looking and realizing no one was standing next to me and knowing that I was being prepared for this next son. I would love to say my first thought was of elation or joy, but to be honest it was the thought, "Oh really...." with a small let down feeling. Right after thinking of that I knew that this boy that was coming to our family was a strong spirit, one that was going to be bringing me different challenges than my other boys have brought.

After Brody turned 3, Allen and I realized how easy he was to handle and that we were ready to have another baby. The only problem was we were REALLY comfortable with our life, we were finally out of diapers and life was getting easier. Come September of '08 I knew we needed to have that other baby, but our insurance wasn't in place and I still wasn't very baby hungry. My boys were baby hungry enough for all of us though. I also think part of me feared what may be coming. Come October, November, December I felt guilty for delaying our family, I KNEW this spirit needed to come into this world and we were meant to bring it. We finally got our insurance taken care of and felt ready for the next step in our family. When I became pregnant I still can't say I was very baby hungry, but I knew this baby was meant to come into our family. This baby was due in January, I was hoping to have it on the 10th of January so it would have a birthday of 01/10/10. Me and my dates:)

After my sister and sister-in-law had their baby, I was VERY baby hungry. I not only wanted this baby, I wanted him NOW. Of course that is NOT how pregnancy works, and that was when the sickness started, as usual. I was very sick and very mad that my sickness was affecting my whole family and feeling that my poor boys were being raised by TV. I hated the sickness and I hated knowing that if this baby was a boy he might be born with complications or sickness. I was lazy with my other boys, taking my vitamins here and there etc... With this one knowing what I felt, I was faithful, taking vitamins for 5 months before the pregnancy and every day during, I was going to do everything in my power to help this baby be as healthy as possible.

When we went into the gender check I'm not sure what I was more worried about. This being the boy I know was coming to our family with the potential of "something", or it being a girl and us having another girl etc.. until this boy arrived. Both were strong fears and when the technician told us it was a boy, I almost felt relief that the boy I knew was coming, is coming. We were happy, we knew boys, we can handle boys. I still feared what this boy was coming with, but didn't overly worry, after all you can't fix something without knowing what to fix. At this point, besides telling Allen what I heard when Brody was born, I hadn't told him any of my concerns, I didn't want him to worry about something that might be nothing.

After the gender check they have the triple screening and ultrasound to check for birth defects. At this point I am absolutely stressed that it is spinal bifida or something like that. We are paying for all my medical expenses as we are on major medical insurance, so we didn't want to do any unnecessary tests, but because of my concerns I felt we should do the tests. We would NEVER consider aborting a baby, but I had read once that a baby with spinal bifida can be healed in the womb. Now I'm not sure if that is true and would of bypassed any of these tests if I didn't believe there was something to be done prior to the babies birth. Thinking there might be something we can do we took all the tests they offer. The first is an ultrasound, Allen was off hunting at this time and so I went by myself. During the ultrasound I asked the technician about Spinal Bifida and also Down Syndrome, the two most common birth defect and disorder. The technician said the spine looked great and then went through the baby showing me his feet, hands, scalp, heart etc and explained that he had no signs of down syndrome. After that I went to get my blood drawn for all the other tests. When visiting with the doctor, she asked if the technician told me about the cyst, I said no. The doctor explained the baby showed a small cyst in his brain, she said the chances of it becoming a cancerous tumor was 1 in 2000, which are really good odds. I personally didn't think those were good odds at all, but that could be due to the fear I already had. The doctor said it was very common and to not worry and she wouldn't even tell anyone. After going home and doing research I found MANY stories on the internet about people whose babies had cysts, most said they disappeared by birth, those who hadn't said they had thriving 2 year olds, 3 year olds etc.. Many said their doctor blamed it on the improvement of the ultrasound machines and the ability they have to see things more clearly. I decided to heed the doctors advice and just informed Allen of the findings. The blood work came out all on normal levels and everything looked good from the tests. At this point I knew that I wasn't imagining that this spirit inside of me was going to have different challenges then my boys had, due to all the tests coming in "normal" I figured it had to be a learning disorder.

The rest of the pregnancy was like my boys, sick, tired, sick, one good month and then fatigue. During the time I went through all the known disabilities, I thought of my friends and neighbors that have children with special needs and wondered what it could be,what challenges we would face. I pleaded with my Heavenly Father that this baby would be born healthy and "normal". I knew the answer was no, time and time again. We are taught that we need to pray for our needs, wants, desires, but we should also always allow God's will, I was not ready to allow God's will. I came up with a million reasons why we could not have a son with special needs, and informed him of every reason I could think up. I went so far as telling some people I would find it difficult to raise a child with special needs. I remember a conversation I had with some co workers when I was 20 and one of the co workers was saying she could raise a child with special needs, I remember quickly saying I'm not sure if I could, while the back of my mind told me I was wrong, but even then I felt if I told myself I could, if I said it out loud then the chances were likely. I figured we are not given what we cannot handle and so I was going to do EVERYTHING in my power to convince God that we could not handle a special needs child or one with health issues, and again I knew the answer was no. I also knew deep down that we could handle whatever this spirit would bring, but if I admitted that then I would be giving in. By this time in December I informed Allen I was worried about the babies health, he knew about the cyst and we were going in to get another ultrasound to see if it disappeared.

One thing to note right now is the LOVE I had for the baby in my womb. When I was pregnant with Colby, we wanted him, but we were also in shock, not knowing what to expect or think. He was born and I knew I loved him then immediately. With Brody I worried during my pregnancy that I might not be able to love another child like I loved Colby, the minute he was born I had no doubt that I could and it was just as deep. With this baby I was CRAZY in love with him before he was born, I knew I would of been devastated if something happened. The love for him before he was born was amazing to me. We did another ultrasound before our baby was due to check on the cyst, it had disappeared at that time.

It was finally time to bring our 3rd baby boy into this world, we were very excited and ready to bring him about into our family. Just before we went to the hospital I again asked that he be born without any complication, again the answer was a definite no, I asked that he be healthy, and was comforted, I can't say the answer was yes, but I was ready to accept his will, I was ready for this baby to come.

8 hours of labor our baby was born, he is sooo perfect, I remember they handed him to me and I thought how handsome and chubby he was. His eyes locked right into mine and I felt as if he could see my soul, as if he was weighing me and my soul. I still believe he has the ability to look into your soul. I did notice immediately his eyes were not as wide as my other two boys and how swollen the poor baby was. I rubbed his hair and was SO happy he had hair to rub, I love hair on babies and my first two had so little and it was so blond you couldn't even see it. Allen and I agreed he didn't look like either of the boys and was his own person. As they were weighing and checking his stats, I looked over him and thought how perfect he was and it must be a learning disability. I asked for is APGAR Test and he had 8's, not as high as I wanted, but I thought, "passed the first test" It was late at night and some of the family members came and visited our beautiful baby boy, we wrote the names on the board and started the debate of what to call him. We decided to have his middle name be Joe after his Grandma Jo, we just added an e to make it masculine. They transferred us to our room and we sent the new baby boy to the nursery so we could get some rest.

The next morning I woke up at around 8:30 and was surprised that they hadn't brought our baby back in yet. Allen was still asleep, but I worked on waking him to go get the baby. The new nurse came in and I asked her to bring him in. She asked me if he looked like any of his brothers and I told her no he was his own. She went and brought in the new boy. I tried to nurse him again, but she admitted they had just fed him at 8, I remember being a little bit annoyed with that!

After the nurse left, our Pediatrician came in and said he was there to look over Porter, he asked us about the medical history of our family and if there were any concerns during my pregnancy, except for the cyst that he saw in the charts. I said there were none and that besides some cancers there wasn't any major medical history. This all should of red flagged to me that they were concerned about something, but the baby seemed as healthy as can be. After reviewing the chart and going over the baby, the Dr. sat down and said that he rec'd a call early this morning and the nurse on shift suspected that the baby might have some signs of Down Syndrome. He then proceeded to go to the baby (I keep calling Porter, the baby since at that point he still didn't have a name) and point out the signs that he didn't have. He mentioned the most common signs of Down Syndrome were, webbed feet or hands, stubby toes or fingers, one crease in the hand, thick tongue that doesn't fit in his mouth, low muscle tone etc.. He then said there are some signs that the nurse noticed that could be signs of Down Syndrome, one is extra skin on the back of the neck, small features of eyes, ears and nose, (even though he also felt that the small features fit with our family) spacing between the big toe and next and they don't look like their other siblings. The doctor then said he didn't think he had Down Syndrome, but there was enough signs that it might be worth testing, he then asked if it was okay if he went and consulted another doctor. We said of course as he went to get another doctor. During that time my mom showed up with the boys, my boys weren't allowed into see the baby, and so I was going to go out there and visit with them. We asked her to wait in the hall just as the Doctor came in with another Doctor. He explained this Doctor was from the NICU and has more experience with this. The Doctor also looked at our new baby and said the same thing there are some signs, but he wasn't sure, he then said because there was more than one sign that it might be a good idea to get the test, he also said there is a possibility that he might have Mosaic Down syndrome, which is a very rare form of Down Syndrome. After the Doctors left, I immediately told Allen I wanted to see Colby and Brody and he could decide if he wanted to tell my parents, but I didn't want everyone to know until we knew what we were dealing with.

The visit with the boys was refreshing I enjoyed seeing them and they were soooo excited for the new baby to come home. The Doctor again came the next day with more research and said he did think we should do the test, but he didn't think he had it. Allen agreed and mentioned he didn't think he had it, I turned to him and said, "He does". I knew he had it, and I knew it was Mosaic Downs. Allen and I immediately went on the internet and spent the next day in the hospital doing all the research we could on Down Syndrome and Mosaic Down Syndrome. We learned that there are three kinds of Down Syndrome, Trisomy 21 which is the most come and all cells are affected with the extra chromosome, Trans which is hereditary and Mosaic which is extremely rare and only some of the cells are affected. We learned that they don't know what causes Trisomy 21 and Mosaic, but it is the most common genetic disorder. The last day in the hospital was hard, we had many visitors and we were so happy to show of our new baby, but we felt guilty not telling them what we were going through, not telling them that the baby might have Down Syndrome. Allen mentioned later, he wishes the Doctor told us there thoughts at the end of the hospital visit so that we didn't have to have this sadness with all the happiness. We decided on a name and went with Porter, the name reminded us of Porter Rockwell, a strong person, and it was in the end the only name we could agree on. I just wanted to hold Porter and protect him from the world, protect him from the unknown. I feared my own pride, but was grateful that I was so prepared for his coming, that I grieved after what the world considers the "perfect baby" before he was even born. I was so grateful that he seemed so healthy, but feared his health issues that could come up. 60% of babies with Down Syndrome have a heart defect, online research showed that the costs of a baby with Down Syndrome would be anywhere from 20K to 60K a year, that scared me. I worked hard to have our finances in control with a savings and I think I was more scared of the thought of the pain Porter might be in, him being sick all the time and our savings being depleted and us not being able to do stuff and have to go into debt then I was of the possible diagnosis of our baby. We were finally discharged from the hospital and decided to send an email to close friends and family's letting them know we could use their prayers and Porter was getting some tests, but we didn't want to go into detail until we knew further. The tests would take a week to get back and we didn't want to deal with everyones questions and I didn't want peoples sympathy over Porters possibly diagnosis. I wanted to be congratulated for our beautiful boy and I wanted to enjoy that time. We took Porter in to take the test and the waiting began.... Talk about stress. I knew Porter had Mosaic Downs at this time, but more than that I knew that he was born perfect just the way Heavenly Father wanted him to be born.

Monday the test came back and Allen came home, he informed me that the test came back and Porter had Down Syndrome. I was crushed, not because of what you would think, but because I KNEW he had Mosaic Down Syndrome, and Allen was telling me it was Trisomy 21. We talked a little bit about it and what we needed to do to help Porter have the best life out there. We sent an email out to the same friends and family informing them of the diagnosis and went out to lunch. On the way to lunch we started receiving responses back from family members, all of them beautiful and meaning a lot to our family. All with much love for Porter and what an amazing soul he was. Many mentioned our boys and what protective and wonderful brothers they would be. Some say you picked your families before you came to earth, I'm not sure my boys picked us as parents, but I believe they picked each other to be brothers. They are so good to each other. After sending out the email and getting over the shock of him not having Mosaic, Allen came home from Wrestling practice and told me the Dr called and that he said Porter has Mosaic Down Syndrome. Allen didn't know how to read the tests and didn't understand the difference of Mosaic and Trisomy 21. I knew that is what he had.

Porter Joe Robins has Mosaic Down Syndrome with 13% of his cells affected with an extra chromosome. The only downfall with knowing this is when we thought we had Trisomy 21 we were able to find a ton of research and able to get an idea of what to expect and what we will need to deal with. When we found out it is Mosaic Down Syndrome we realized that we don't know anything again. The research is so limited and there are people out there that didn't discover they had Mosaic until they were adults, there are men with families and kids of their own. Others that are closer to dealing with the symptoms of Down Syndrome. The research is everywhere on it. The majority of children diagnosed with Mosaic Down Syndrome aren't even diagnosed until they are 2 to 4, when they try to talk, which seems to be the most common difficulty among them. How blessed are we that we had an observant nurse who brought up her supiscions, how blessed to have him diagnosed now, so we can work on helping him now and not when we notice a delay. More than that how blessed I am to not have to keep wondering what it was going to be and when it was going to show. We are not naive enough to think we wont have our ups and downs, but what child out there do you NOT have ups and downs with? Aren't all the children born with challenges one way or another, we are just a little more prepared with Porters than our other boys. We are not going to make any assumptions with what he can and cannot do in this life, but there is one assumption we can make. Porter is here to show us all how to love a little deeper, be a little happier and to think about others not just ourselves. He is such a special spirit in our home, of course all babies bring such a happiness in the home. It would be nice to just bottle that and be able to bring it out whenever things are getting dreary. We are crazy about him, especially his brothers, they just can't get enough of him and I love just watching them all together. One thing I enjoy is that everything is a miracle, I've always cherished my babies knowing they last only so long at that age, but I don't think I have fully appreciated every step out there. Porter's birth is a miracle, his first smile is a miracle, his sitting with assistant is a miracle. I am excited to see more miracles each day with my boys. We are grateful for the blessings in our life as my "life with my boys" continues....