I have always wanted to go into labor on my own. With my first three kiddos, various medical reasons cropped up and I ended up needing to be induced. The epidural I received for Little Einstein's birth caused nerve damage and I had 8 months of physical therapy and tons of restrictions before I could successfully walk without a cane and get back to normal life again. With baby number four, Cory, my OBGYN, and I all agreed that an epidural would not be an option.
Fast forward to me waking up to contractions throughout the wee morning hours of the day I hit 39 weeks. By 3:30 am I couldn't go back to sleep between them. Cory headed into work at 4:20 and I told him that there was a really good chance I would be telling him to come home. I texted him just before 5 asking when his first staff member arrives because this was getting intense and the contractions were 3-5 minutes apart. He got in touch with the assistant manager and asked her to head in early. I texted my parents, who were living 30 minutes away, and asked them to come down and watch the other kids so we could head to the hospital. By 6:45 they were here and Cory was home. We grabbed the last few things and headed in.
We arrived at the hospital and I was freaking out because I didn't want to be sent home with how strong the contractions were getting. We were checked into the room by a nurse who wasn't ours, but said she was covering for ours for a few minutes. Then she said I wasn't very dilated but my nurse would check in an hour to see if that had changed. I knew if it hadn't, we would be heading home. Then my nurses came in. We had two (one was in training) and they were both awesome. They hooked me up to the monitors and on the first contraction the baby's heart rate plummeted, then disappeared entirely.
Instantly our room was flooded with 7-8 nurses and a doctor who had been passing in the hall. They shoved an oxygen mask on my face and frantically tried to find the baby by moving the monitor around as the doctor introduced himself. After a few agonizing minutes they found the heartbeat again. It was steady so the extra nurses and doctor headed out. My nurse made the comment that I wasn't going anywhere after that and next thing we knew we were being admitted to the hospital.
The next couple hours were spent staring at the monitor. Thankfully, I had studied up on a few natural birthing methods and felt pretty prepared for laboring without an epidural. I didn't anticipate that I wouldn't be able to move. I had to lay motionless curled up on my right side the entire time. Any time I sat up, rolled over, lay on my left side, or stood the baby's heart rate would immediately plummet. My doctor gave me some time to see if we could avoid a c-section, but because of the baby's position I wasn't dilating fast enough. They tried to get him to move but he wouldn't have it. The plummets became more and more frequent with the nurses running in each time as we all stared at the screen praying it would go back up. It reached the point that the plummets came with every other contraction and stopped rising back up quickly when my doctor made the call to do an emergency c-section.
Cory was told to quickly get into the sterile clothes and I was rushed into the operating room and very quickly prepared for the c-section. I had turned down any offering of pain relief during the labor and after a while they stopped asking. Since his heart was struggling they didn't want pain medicine for me to affect him, which I was in complete agreement with. However, having labor pain and being prepped for emergency surgery while having intense contractions 1-3 minutes apart and being terrified for my little baby was absolutely miserable. I began to shake and cry from the pain and stress. Once everything was prepped I was put under general anesthesia and was oblivious to everything that happened for the next hour.
The rest is what Cory later relayed to me. Once they put me under he waited in an adjacent room with huge glass windows where 5-6 nurses and a NICU doctor were waiting for when our little guy was born. It was a very short time from when I went under to when they had him out and Cory remembers seeing our baby but hearing nothing, other than the nurses saying to each other, "Did you hear a cry? I didn't hear a cry!" The operating room nurse came running with our little one, who was quickly turning blue instead of pink, into the room the other nurses, doctor, and Cory were waiting in. Cory was told as she came that if the baby's heart rate was under 60 they would immediately begin CPR. Everyone sprung into action and someone took his heart rate and shouted out, "It's only 20! No wait, 35, 40, it's rising, 60, 70!"
While his heart rate was going up, he still wasn't breathing so he was put on a ventilator. Cory said he heard our little guy's first sounds when he was around 7 minutes old and he grunted. Once stabilized he was moved up to the NICU. He had very low blood sugar and was given formula through a feeding tube and he was given x-rays of his lungs. Once everything had calmed down Cory asked how I was doing and they brought him to see me in the recovery room.
The first thing I remember is waking up and seeing my two nurses standing by me. I quickly asked if the baby was okay to which they responded, "We think he will be. He is in the NICU with your husband." Then I remember feeling completely overcome with excruciating pain. Shortly after that Cory arrived. He asked how I was feeling. I told him I felt like someone cut me open! He said that seemed fitting, considering someone did. It ended up taking the nurses almost an hour before they could figure out how to give me pain medication through an old piece of equipment--not fun.
My Dad joined us a short time later and he and Cory gave me a priesthood blessing, then they headed up to the NICU to be with our little guy and give him a blessing as well. After a few hours I was taken to the NICU where I got to meet my little baby and Cory and I agreed on his name, which shall be "Carrot Top" to the Internet world. They laid him beside me in my hospital bed, with all his tubes and wires, and I fell deeply in love with my little Carrot Top. I was told that other than his breathing he was doing great, and as soon as he figured out how to do that on his own he would be able to leave the NICU and join me in my room. Cory stayed with him and my Dad came with me. When Carrot Top hit about 4 hours old he was released from the NICU and Cory and Carrot Top were sent to the regular nursery for his bath and check up down there. He was 5 1/2 hours old when they joined me in my room. The next day Spiderman, Princess Unicorn, and Little Einstein were able to come meet their new baby brother and they all loved him right away. Even Little Einstein thought he was a pretty awesome addition to our family.
Carrot Top was 20 3/4 inches tall, but amidst all the craziness they were not able to get an accurate birth weight. It came in as 7 lbs 15 oz, but they were attaching tubes to him and listening to his heart, so he wasn't alone on the scale. It had dropped to 6 lbs 14 oz by the next morning, which the nurses were saying couldn't be right. He ended up at 6 lbs 10 oz when we left the hospital and he was 3 days old. The doctor thinks he was probably around 7 lbs 4 oz at birth, but he started gaining weight after we got him home so it all worked out.
We feel so blessed by the many miracles surrounding the birth of Carrot Top. From having family close to watch the kids so we could get to the hospital and arriving when we did so we knew that my movements were putting him in distress, to the amazing doctors and nurses who were able to save the life of our little boy. We are very thankful to our Heavenly Father for the many blessings we received, and I am so glad that we decided to have him in a skilled hospital that quickly identified when his life was in danger and saved him before it was too late.
Tuesday, July 18, 2017
Tuesday, July 11, 2017
Sweet Baby Number 3
I wrote this post almost two and a half years ago but never published it. I have recently decided to return to blogging about our family life again so here it is. Better late than never, right?
We had been trying and hoping to add baby number 3 for a while when we found out we were pregnant. We were completely ecstatic! I had an oddly normal pregnancy. With Spiderman and Princess Unicorn I had really rough morning sickness that lasted the whole 9 months. Well, technically I had month 7 off of morning sickness with Spiderman but it came back with a vengeance month 8. This time around it was much more manageable. I was able to function pretty normally and chalked it up to the fact I was going to Zumba 3 times a week and much more active than during my last two pregnancies, but I couldn't get rid of the fear in the back of my mind that something was different with this baby.
We had to wait until 22 1/2 weeks for our gender ultrasound. Really? I was going crazy wanting to know if the little tyke would be a boy or a girl. The week of the appointment was absolutely insane. The Tuesday of that week we had an EEG for sweet Princess Unicorn, Wednesday was the ultrasound, followed by the Thursday check up with the OB and then Friday was a ward dinner Cory and I were in charge of. Due to the ward dinner, we spent the week prepping different foods at our home pretty much every day and having people over to help with the food prep along with passing out fliers, collecting decorations, and organizing everything else for the dinner. Those who know our little Spiderman know that he is a very energetic little guy. He is one of the sweetest and kindest kids I know but really struggles with sitting still and focusing. Just before the week began we were informed that primary, his church class, was going poorly with him and had a meeting to try and figure out how to help him more. It was a crazy week. I kept thinking, "Princess Unicorn has what we think are Absence Seizures, Spiderman has energy and focusing problems at church, I just hope and pray everything is okay with the baby."
The day of the ultrasound came and it was amazing. I love ultrasounds. It is so fun to see the little one growing inside of me. :) I remember she took a really long time examining the little one's head. We switched to a new office so I thought that she was probably just a lot more detailed than our past ultrasound offices and enjoyed seeing the little one. She wasn't a really talkative person, so a lot of the time I wasn't sure what she was looking at. Then she said we were going to see the arms and she couldn't find one of them. I don't mean a, hmmm.. where is the arm? There it is! I mean a full on 5 minutes of her looking for the baby's arm. I was seriously wondering if there was one! She eventually found it tucked behind the baby's back and moved on. She went through the rest of the ultrasound and after convincing the little one to change positions we discovered that we were expecting a boy. I was so happy. Spiderman and Princess Unicorn are going to have a baby brother! I absolutely loved the boy name we picked out and was thrilled that we would get to use it. Everything was great! We headed home to share the good news with the cute little pictures she printed out for us in hand and I just kept praying and thanking Heavenly Father that we had a healthy and strong little boy.
The doctor appointment went great, then came the Friday dinner. CRAZY!!!! I had about 35 minutes that entire day where I was not working on something for the dinner. It was a long, intense evening. M, our exchange student from Japan, was amazing and watched the kids for me in the afternoon so I could be at the church helping set up. I kept thinking, "Princess Unicorn's EEG is done so we just have to wait for the results, we are trying essential oils with Spiderman and they are working great at helping him focus and be calmer, the baby is healthy and strong and this dinner will be done tonight and I can relax again!"
Then I got the phone call. I was busy grabbing a few things at home to run to the dinner when the phone rang. I saw it was my OBGYN's office. I have never gotten a call from them other than appointment reminders so I knew this was probably important. When I answered and heard the doctor's voice as opposed to a nurse, I knew something was going on. He said a bunch of things along the lines of "these things typically turn out fine" and "don't worry about them" before he got to the point. They had found a few abnormalities during the ultrasound. The baby's right kidney is dilated. "Okay," I thought, "I have heard of that before. I know that it is more common in boys, generally fixes itself before birth and mostly just means an increased risk of Down syndrome." I wrote it down on the nearest paper I could find and he went on. Babies have fluid compartments in their brains and our baby had one that is larger than the other. That wasn't something I had heard of and didn't even have time to process it as I wrote it down and he continued. My placenta is too low so to be careful with what I do and watch for bleeding and we would have an ultrasound in two months with a specialist in Provo to get more information on the baby and then he hung up. I finished writing and ran to continue setting up for the dinner and gave Cory a quick call to update him on what the doctor said.
I was working with the other committee members hanging snowflakes at church when it hit me--something may be wrong with the baby's brain. The kidney is one thing, fairly common, normally fixes itself, not too much to worry about. The brain? I felt so lost and confused. I wanted to run home and jump on Google and find out what in the world it meant. I couldn't believe I didn't ask the doctor more questions! I just wrote it down and kept going on. So much was happening in my mind. I was trying so hard to keep on task with this dinner and ended up locking myself in the church library so I could text my best friend that they had found abnormalities and get some kind of support. She offered to google for me but I told her that one of them was with the brain and so I was worried about what she would find and didn't want to be bawling while trying to serve dinner to 100 adults from my ward. She was kind and supportive and seemed to know just what to say to get me to calm down and not burst into tears and I was able to get back to work and pretend everything was fine. The dinner went well. It was a crazy night but I had an amazing committee (and chef/husband/co-chair) and everything came together. Then I went home and the internet searching began.
I mostly focused on the brain issue, which I learned was called Unilateral Ventriculomegaly. As long as the fluid compartment is not above a certain range, the babies tend to turn out normal, as long as there is not a chromosome abnormality (the most common of which is Down syndrome). They mention a lot that if this is the only abnormality, then the babies are almost always fine, but that the risk is greatly increased if another abnormality is present pointing towards a chromosome issue (hmm... like a dilated kidney?). From the many articles I read on both issues, it seemed our chance for this cute little guy having Down syndrome was somewhere between 1:10 and 1:3, depending on the study and website I found.
I should comment here that I absolutely love children with Down syndrome. I was blessed to spend many, many hours volunteering and working at a special needs school and I really enjoyed the children I was able to serve. I also was able to work with children for 4 summers at a Family Camp where I would sometimes have a child up for the week who had special needs. I was always excited when I was told there would be a child with Down syndrome in my class. Those kids were always fun and spunky little ones (I worked with kids 3-5 years old and under depending on the year) and I loved having them in my class and getting to know them. One of my favorite kids I have ever met I was able to have in my class for the whole summer because she lived at the camp with her family. I loved spending so much time with her! I remember deciding that when I was "grown up" I wanted to adopt a child with Down syndrome.
Fast forward to the present time again. As I was doing all of this reading on Google I felt relieved. This little guy will either be normal or have Down syndrome. I can handle that. I can do that. Then the unknown started to set in. This was a really hard time for me. I didn't cry about it. Every experience I have had with children who have Down syndrome has taught me that these are extremely special children and I wasn't upset or angry that there is such a high chance our little guy has it. I think I was feeling more lost. The work I have done has involved children ages 3 to young adult. I have zero experience with Down syndrome infants. What do I expect? How do I care for the baby? Will he be like my other babies? What special help will he need? How will other people treat him? Will other people stare at him a lot? Will he be treated differently? Will people be constantly telling me they are sorry or they wish we didn't have to deal with this? Or perhaps, that they wish he was "normal?" The more I thought about it these concerns ate at me. Especially the concerns over how he would be treated. I loved him already and was looking towards this experience with as much optimism as I could muster but the fear of what others would say about my little boy and the way he would be treated were driving me crazy!
One interesting moment I had was the first time I formally prayed with my family after the phone call. I think it was probably breakfast with my kids the next day. I always include the new baby in the prayers I say, particularly that the baby will be healthy and strong. This time I paused. I have no idea how long I paused in real time but if felt like a while to me. I thought, "Do I keep praying for this when we know something may well be wrong with the baby?" Then I thought, "You prayed that the baby is healthy and strong. That is what has always mattered to you, what you have always wanted. What have you been told? Is the baby strong? Yes. Is the baby healthy? Yes. These abnormalities may affect the baby's cognitive function and/or chromosome count, but the baby is healthy and strong." I felt relieved and blessed and continued with the prayer, thanking Heavenly Father for the baby being healthy and strong and asking that the baby continue to remain healthy and strong.
I didn't tell anyone, other than the best friend I had already texted and Cory, that anything was going on with the baby. I didn't want negativity entering in when I was fighting to stay positive. Mostly I was going absolutely insane not knowing. When we opted out of prenatal genetic testing my thought was, I would be fine finding out our little one has Down syndrome or another genetic problem at birth. It never occurred to me that we could receive abnormal ultrasounds and spend the rest of the pregnancy not knowing. I kept thinking, I am fine either way but I have to know! I am a huge preparer and not knowing what to prepare for was infuriating. After two weeks, I couldn't do it anymore. I was breaking down into tears constantly (not because of the possible diagnoses, but because of the stress of not knowing), avoiding people and spending every moment my kids were asleep googling the abnormalities again and again as if the right website would pop up saying, Ashley, your child does/does not have Down syndrome.
After breaking down to my best friend one day, I am pretty sure her prayers on my behalf were answered. I had the thought that I should research how to deal with uncertainty. I read a mostly unhelpful article which had one amazing, "Duh!" moment for me. The author said when she did not know where her family would be moving and would not find out until just before the move, she planned for both places. That way she was set with either one. It took more time to make two plans but was worth it in the end because they were totally prepared for each outcome. DUH!!!!! Why on earth did I not think of that!? I felt free! I would make a plan for if the little guy comes with a regular number of chromosomes and a plan for if he comes with Down syndrome. Either way, we would be prepared.
I researched everything I could find on Down Syndrome infants and newborns and was surprised how hard it is to find information. It took a while but I started to find the resources I was looking for. I learned that they have poor muscle tone. My infant carrier, which I loved with my other two kids, would not work for this little guy. I researched which one to buy if he has Down syndrome. I read all about the breastfeeding problems they can have due to the low muscle tone and different things to try. I already had a shopping list of things we still need for baby boy but I made a second list of things to add if he has Down syndrome. I started to feel so much less stressed and life continued to go on.
One thing continued to bother me. Whenever I thought of the baby, I thought about whether the baby has Down syndrome or not. Will he be "normal" or not? I was having the hardest time thinking of my baby in any other way. As I read birth stories of Down syndrome infants I saw that many of them commented on how when they looked at their baby, they saw a diagnosis, not a newborn. I realized that was exactly what I was doing when I thought of my baby. I was thinking,"Does he have this diagnosis or not?" I wasn't sure how to stop doing it but it was really bothering me. A friend of mine has a baby boy who is 4 months old and I got to hold him the other day. I loved holding him but the whole time I kept thinking, will my son be like this or will I have to hold him differently because of poor muscle tone? Will he look like this or will his nose and eyes be shaped different? Will he be able to hold his head up? I wanted to stop focusing on these issues and just see the little baby growing inside me as my baby again but I had no idea how.
As I was looking for a good blog to help me know how a Down syndrome baby would be different from a regular baby, I found this amazing site, http://theamazingellagrace.blogspot.com This mother has written since her daughter Ella's birth and she is now in 1st grade. I was able to read all about what she was like for her first years and it was amazing. While I was able to see the differences, I was able to see something even more precious, her little personality, her traits that were so much like her brother's, her smiles and throwing fits, her very normal baby side. I loved reading about how even though she has Down syndrome and is delayed in some areas, she is a normal baby with good days and bad days and a love for water like her brother and food she does and does not like. It showed me that while my little boy might be different, he will still be my little boy.
My funk was over. I saw the blue sky again and realized that I could again see my little one as my new baby, Spiderman and Princess Unicorn's little brother, my sweet newborn and that it truly does not matter if he has Down syndrome or not. At least not to me--not anymore. He will be a cutie with blue eyes (genetically they shouldn't be any other color), he will probably have lots of hair like my other two, his first words will be in ASL just as all my kids' were, since I start teaching it to them at birth. He will love his siblings and they will love him. I had my little boy back. While I am curious as to what the next ultrasound will tell us and if they will find more markers for Down syndrome or not, I find myself finally at peace and ready to meet my little boy (in 3 months when he is due) and excited to embrace life with him as a part of it.
(As time went on a shared what was going on with a few more people and was so blessed and thankful for their love and support. Our follow up appointments over the next few months showed both his brain and kidney issues resolving before birth and it turns out he does not have Down syndrome. He will be known to the internet world as Little Einstein)
We had been trying and hoping to add baby number 3 for a while when we found out we were pregnant. We were completely ecstatic! I had an oddly normal pregnancy. With Spiderman and Princess Unicorn I had really rough morning sickness that lasted the whole 9 months. Well, technically I had month 7 off of morning sickness with Spiderman but it came back with a vengeance month 8. This time around it was much more manageable. I was able to function pretty normally and chalked it up to the fact I was going to Zumba 3 times a week and much more active than during my last two pregnancies, but I couldn't get rid of the fear in the back of my mind that something was different with this baby.
We had to wait until 22 1/2 weeks for our gender ultrasound. Really? I was going crazy wanting to know if the little tyke would be a boy or a girl. The week of the appointment was absolutely insane. The Tuesday of that week we had an EEG for sweet Princess Unicorn, Wednesday was the ultrasound, followed by the Thursday check up with the OB and then Friday was a ward dinner Cory and I were in charge of. Due to the ward dinner, we spent the week prepping different foods at our home pretty much every day and having people over to help with the food prep along with passing out fliers, collecting decorations, and organizing everything else for the dinner. Those who know our little Spiderman know that he is a very energetic little guy. He is one of the sweetest and kindest kids I know but really struggles with sitting still and focusing. Just before the week began we were informed that primary, his church class, was going poorly with him and had a meeting to try and figure out how to help him more. It was a crazy week. I kept thinking, "Princess Unicorn has what we think are Absence Seizures, Spiderman has energy and focusing problems at church, I just hope and pray everything is okay with the baby."
The day of the ultrasound came and it was amazing. I love ultrasounds. It is so fun to see the little one growing inside of me. :) I remember she took a really long time examining the little one's head. We switched to a new office so I thought that she was probably just a lot more detailed than our past ultrasound offices and enjoyed seeing the little one. She wasn't a really talkative person, so a lot of the time I wasn't sure what she was looking at. Then she said we were going to see the arms and she couldn't find one of them. I don't mean a, hmmm.. where is the arm? There it is! I mean a full on 5 minutes of her looking for the baby's arm. I was seriously wondering if there was one! She eventually found it tucked behind the baby's back and moved on. She went through the rest of the ultrasound and after convincing the little one to change positions we discovered that we were expecting a boy. I was so happy. Spiderman and Princess Unicorn are going to have a baby brother! I absolutely loved the boy name we picked out and was thrilled that we would get to use it. Everything was great! We headed home to share the good news with the cute little pictures she printed out for us in hand and I just kept praying and thanking Heavenly Father that we had a healthy and strong little boy.
The doctor appointment went great, then came the Friday dinner. CRAZY!!!! I had about 35 minutes that entire day where I was not working on something for the dinner. It was a long, intense evening. M, our exchange student from Japan, was amazing and watched the kids for me in the afternoon so I could be at the church helping set up. I kept thinking, "Princess Unicorn's EEG is done so we just have to wait for the results, we are trying essential oils with Spiderman and they are working great at helping him focus and be calmer, the baby is healthy and strong and this dinner will be done tonight and I can relax again!"
Then I got the phone call. I was busy grabbing a few things at home to run to the dinner when the phone rang. I saw it was my OBGYN's office. I have never gotten a call from them other than appointment reminders so I knew this was probably important. When I answered and heard the doctor's voice as opposed to a nurse, I knew something was going on. He said a bunch of things along the lines of "these things typically turn out fine" and "don't worry about them" before he got to the point. They had found a few abnormalities during the ultrasound. The baby's right kidney is dilated. "Okay," I thought, "I have heard of that before. I know that it is more common in boys, generally fixes itself before birth and mostly just means an increased risk of Down syndrome." I wrote it down on the nearest paper I could find and he went on. Babies have fluid compartments in their brains and our baby had one that is larger than the other. That wasn't something I had heard of and didn't even have time to process it as I wrote it down and he continued. My placenta is too low so to be careful with what I do and watch for bleeding and we would have an ultrasound in two months with a specialist in Provo to get more information on the baby and then he hung up. I finished writing and ran to continue setting up for the dinner and gave Cory a quick call to update him on what the doctor said.
I was working with the other committee members hanging snowflakes at church when it hit me--something may be wrong with the baby's brain. The kidney is one thing, fairly common, normally fixes itself, not too much to worry about. The brain? I felt so lost and confused. I wanted to run home and jump on Google and find out what in the world it meant. I couldn't believe I didn't ask the doctor more questions! I just wrote it down and kept going on. So much was happening in my mind. I was trying so hard to keep on task with this dinner and ended up locking myself in the church library so I could text my best friend that they had found abnormalities and get some kind of support. She offered to google for me but I told her that one of them was with the brain and so I was worried about what she would find and didn't want to be bawling while trying to serve dinner to 100 adults from my ward. She was kind and supportive and seemed to know just what to say to get me to calm down and not burst into tears and I was able to get back to work and pretend everything was fine. The dinner went well. It was a crazy night but I had an amazing committee (and chef/husband/co-chair) and everything came together. Then I went home and the internet searching began.
I mostly focused on the brain issue, which I learned was called Unilateral Ventriculomegaly. As long as the fluid compartment is not above a certain range, the babies tend to turn out normal, as long as there is not a chromosome abnormality (the most common of which is Down syndrome). They mention a lot that if this is the only abnormality, then the babies are almost always fine, but that the risk is greatly increased if another abnormality is present pointing towards a chromosome issue (hmm... like a dilated kidney?). From the many articles I read on both issues, it seemed our chance for this cute little guy having Down syndrome was somewhere between 1:10 and 1:3, depending on the study and website I found.
I should comment here that I absolutely love children with Down syndrome. I was blessed to spend many, many hours volunteering and working at a special needs school and I really enjoyed the children I was able to serve. I also was able to work with children for 4 summers at a Family Camp where I would sometimes have a child up for the week who had special needs. I was always excited when I was told there would be a child with Down syndrome in my class. Those kids were always fun and spunky little ones (I worked with kids 3-5 years old and under depending on the year) and I loved having them in my class and getting to know them. One of my favorite kids I have ever met I was able to have in my class for the whole summer because she lived at the camp with her family. I loved spending so much time with her! I remember deciding that when I was "grown up" I wanted to adopt a child with Down syndrome.
Fast forward to the present time again. As I was doing all of this reading on Google I felt relieved. This little guy will either be normal or have Down syndrome. I can handle that. I can do that. Then the unknown started to set in. This was a really hard time for me. I didn't cry about it. Every experience I have had with children who have Down syndrome has taught me that these are extremely special children and I wasn't upset or angry that there is such a high chance our little guy has it. I think I was feeling more lost. The work I have done has involved children ages 3 to young adult. I have zero experience with Down syndrome infants. What do I expect? How do I care for the baby? Will he be like my other babies? What special help will he need? How will other people treat him? Will other people stare at him a lot? Will he be treated differently? Will people be constantly telling me they are sorry or they wish we didn't have to deal with this? Or perhaps, that they wish he was "normal?" The more I thought about it these concerns ate at me. Especially the concerns over how he would be treated. I loved him already and was looking towards this experience with as much optimism as I could muster but the fear of what others would say about my little boy and the way he would be treated were driving me crazy!
One interesting moment I had was the first time I formally prayed with my family after the phone call. I think it was probably breakfast with my kids the next day. I always include the new baby in the prayers I say, particularly that the baby will be healthy and strong. This time I paused. I have no idea how long I paused in real time but if felt like a while to me. I thought, "Do I keep praying for this when we know something may well be wrong with the baby?" Then I thought, "You prayed that the baby is healthy and strong. That is what has always mattered to you, what you have always wanted. What have you been told? Is the baby strong? Yes. Is the baby healthy? Yes. These abnormalities may affect the baby's cognitive function and/or chromosome count, but the baby is healthy and strong." I felt relieved and blessed and continued with the prayer, thanking Heavenly Father for the baby being healthy and strong and asking that the baby continue to remain healthy and strong.
I didn't tell anyone, other than the best friend I had already texted and Cory, that anything was going on with the baby. I didn't want negativity entering in when I was fighting to stay positive. Mostly I was going absolutely insane not knowing. When we opted out of prenatal genetic testing my thought was, I would be fine finding out our little one has Down syndrome or another genetic problem at birth. It never occurred to me that we could receive abnormal ultrasounds and spend the rest of the pregnancy not knowing. I kept thinking, I am fine either way but I have to know! I am a huge preparer and not knowing what to prepare for was infuriating. After two weeks, I couldn't do it anymore. I was breaking down into tears constantly (not because of the possible diagnoses, but because of the stress of not knowing), avoiding people and spending every moment my kids were asleep googling the abnormalities again and again as if the right website would pop up saying, Ashley, your child does/does not have Down syndrome.
After breaking down to my best friend one day, I am pretty sure her prayers on my behalf were answered. I had the thought that I should research how to deal with uncertainty. I read a mostly unhelpful article which had one amazing, "Duh!" moment for me. The author said when she did not know where her family would be moving and would not find out until just before the move, she planned for both places. That way she was set with either one. It took more time to make two plans but was worth it in the end because they were totally prepared for each outcome. DUH!!!!! Why on earth did I not think of that!? I felt free! I would make a plan for if the little guy comes with a regular number of chromosomes and a plan for if he comes with Down syndrome. Either way, we would be prepared.
I researched everything I could find on Down Syndrome infants and newborns and was surprised how hard it is to find information. It took a while but I started to find the resources I was looking for. I learned that they have poor muscle tone. My infant carrier, which I loved with my other two kids, would not work for this little guy. I researched which one to buy if he has Down syndrome. I read all about the breastfeeding problems they can have due to the low muscle tone and different things to try. I already had a shopping list of things we still need for baby boy but I made a second list of things to add if he has Down syndrome. I started to feel so much less stressed and life continued to go on.
One thing continued to bother me. Whenever I thought of the baby, I thought about whether the baby has Down syndrome or not. Will he be "normal" or not? I was having the hardest time thinking of my baby in any other way. As I read birth stories of Down syndrome infants I saw that many of them commented on how when they looked at their baby, they saw a diagnosis, not a newborn. I realized that was exactly what I was doing when I thought of my baby. I was thinking,"Does he have this diagnosis or not?" I wasn't sure how to stop doing it but it was really bothering me. A friend of mine has a baby boy who is 4 months old and I got to hold him the other day. I loved holding him but the whole time I kept thinking, will my son be like this or will I have to hold him differently because of poor muscle tone? Will he look like this or will his nose and eyes be shaped different? Will he be able to hold his head up? I wanted to stop focusing on these issues and just see the little baby growing inside me as my baby again but I had no idea how.
As I was looking for a good blog to help me know how a Down syndrome baby would be different from a regular baby, I found this amazing site, http://theamazingellagrace.blogspot.com This mother has written since her daughter Ella's birth and she is now in 1st grade. I was able to read all about what she was like for her first years and it was amazing. While I was able to see the differences, I was able to see something even more precious, her little personality, her traits that were so much like her brother's, her smiles and throwing fits, her very normal baby side. I loved reading about how even though she has Down syndrome and is delayed in some areas, she is a normal baby with good days and bad days and a love for water like her brother and food she does and does not like. It showed me that while my little boy might be different, he will still be my little boy.
My funk was over. I saw the blue sky again and realized that I could again see my little one as my new baby, Spiderman and Princess Unicorn's little brother, my sweet newborn and that it truly does not matter if he has Down syndrome or not. At least not to me--not anymore. He will be a cutie with blue eyes (genetically they shouldn't be any other color), he will probably have lots of hair like my other two, his first words will be in ASL just as all my kids' were, since I start teaching it to them at birth. He will love his siblings and they will love him. I had my little boy back. While I am curious as to what the next ultrasound will tell us and if they will find more markers for Down syndrome or not, I find myself finally at peace and ready to meet my little boy (in 3 months when he is due) and excited to embrace life with him as a part of it.
(As time went on a shared what was going on with a few more people and was so blessed and thankful for their love and support. Our follow up appointments over the next few months showed both his brain and kidney issues resolving before birth and it turns out he does not have Down syndrome. He will be known to the internet world as Little Einstein)
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