Our Biggest Victory

When Sienna was born, we were unprepared. We had no idea that she had Down syndrome until she arrived. I had done no special preparing in regards to breastfeeding. While I was pregnant, I was even thinking that breastfeeding would be less challenging the second time around. Minutes after she was born and before I knew of her diagnosis, she latched on and started nursing like a champ. I remember thinking this will be so much better now that I know what I am doing. The joke was on me.

It didn’t take long for the challenges of breastfeeding a baby with Down syndrome to reveal themselves. The doctors, nurses, and lactation consultants all had varying opinions. Some said it couldn’t be done. What makes it so difficult? Babies with Down syndrome have very low muscle tone. Sienna had to exert a ton of energy and strength to nurse. In addition to her low muscle tone, we could not wake her to eat. The lactation consultant at the hospital encouraged me to pump. She said it would require less work for Sienna to take a bottle. I followed her advice and started in the hospital. 

When we brought Sienna home, all she wanted to do was sleep. She was nothing like Haley had been. Haley was so hungry from the beginning. Sienna refused to wake up, even when you put a bottle in her mouth. I combed the internet searching for information. As I read, I discovered that it was not uncommon for babies with Down syndrome to sleep for 21 or more hours per day for the first few weeks of their life. Weight gain was going to be a challenge. Every two hours, I tried to wake her to nurse her. She had no interest and I started to worry about my milk supply. When she wouldn’t nurse, I would pump. We couldn’t get her to eat anything the first day. I started to get scared. How was this baby going to survive if she wasn’t eating?

My next step was to call the lactation department at the hospital. They encouraged me to come in. They were helpful. When we got there, Sienna decided to wake up for the first time. They showed us some positions that might make nursing less of a challenge for Sienna. It worked while we were at the hospital. I rented a hospital grade pump. We developed a game plan. I needed to pump for 3 minutes. Then I needed to nurse Sienna for 10 minutes. Then I had to pump again for an additional 15-30 minutes. I needed to repeat this regimen every 2 hours. I couldn’t let Sienna get too tired, so I was only allowed to let her nurse in small spurts. 

Let me break this down. Let’s say our first feeding was 9 am. I would wrap up with the pump, nurse, pump agenda in about an hour, which meant I had an hour break. Then I would resume again at 11 am. This went on all day and night. Exhausting does not even begin to cover it. On top of the constant pumping and bottle feeding, I was constantly cleaning bottles and pumping equipment. It was non stop. 

This routine worked sometimes but sometimes she wouldn’t wake up to nurse. Many times she would refuse. Even if you put the bottle in her mouth, she would still refuse. She wanted to sleep all the time. We tried stripping her down. We tried cold wash cloths. We even went so far as to give her a bath to try to wake her.

Nothing seemed to be working. We went to the pediatrician every single day. Her weight was still going down. I explained to our pediatrician that she was impossible to wake up. No one seemed to understand how truly hard it was to wake her up. I started to get nervous that we were going to need a feeding tube. After about a week, she started to turn a corner. She still wasn’t strong enough to latch for more than a few minutes at a time, but she was waking up more often and more easily. At this point, our pediatrician had told us to feed her with pumped breast milk fortified with formula for extra calories every 2 hours. She started to gain weight very slowly. At this point, I had formed connections with several Down syndrome support groups. If you’re a new mom to a child with Down syndrome, please email me at shannon@thislifewegot.com and I will share all the local and national resources available. The Down syndrome community is a big family and we want to share our knowledge with new parents. We even have a specific breastfeeding group. Truth be told, it was my biggest resource. 

I was also learning that Sienna would benefit from breastmilk, because it would boost her immune system and protect her from numerous auto-immune disorders. This was especially important for her because babies with Down syndrome were more prone to respiratory and viral infections. If Sienna had a respiratory infection that led to pneumonia, it could lead to congestive heart failure due to her heart defect. I knew that breastfeeding was one of the best ways to prevent her from becoming sick.

I also learned that through nursing her oral motor muscles could become stronger, making her less likely to have speech delays and feeding issues. The repetitive sucking action during breastfeeding would strengthen her lips, tongue, and face.

There were other selfish reasons I wanted to breastfeed as well. It had been such a bonding experience with Haley. I wanted that bond with Sienna. I wanted to be her source of love, comfort, and nourishment.

For these reasons, I became more determined than ever to make it work. Some people made me feel like I was a little nuts about all of this, but I didn’t care. Our pediatrician (whom I love) told me that I needed a break and that it wouldn’t be the end of the world if we had to turn to formula. The most important thing was that Sienna was gaining weight. I cried dozens of times in his office those first few weeks. He was trying to lighten my load, but I refused to give up. So many things about all of this had been out of my control. I wanted to fight back and stand strong. I remember one particularly bad evening that Sienna had been up all night. She wouldn’t nurse. She would latch and pull off. There is nothing more frustrating as a new mom than being repeatedly rejected by your baby. What was wrong? I kept trying but after a long fight, I gave in and gave her a bottle while simultaneously pumping. I had it out with God that night. I prayed and vowed not to give up on nursing. I told God that I had to believe this was happening for a reason, but I would not lay down and give up. God had tested me with miscarriages, Sienna’s diagnosis, and her heart. Those things had been out of my control. This was within my power and I would not give it up without a fight. He wanted to test me. Test away. I had survived every obstacle thrown at me over the past few years. This would not break me. I would succeed for myself and my daughter.

At some point, we developed a small routine. Every morning, we would start the day out by trying to nurse. She seemed to do well in the mornings. She would nurse for about 15 minutes straight but that would be it. She would want nothing to do with me after that. At the time, we thought she might have a lip tie. I had seen occupational therapists, lactation consultants, and two pediatricians. Everyone thought something different. When Sienna was about 6 weeks old, we ventured to Philadelphia for her to meet her family. We brought the giant hospital grade pump along with us. Jason drove the whole way while I pumped and fed Sienna bottles. She was still being given bottles with formula fortified breastmilk. Her belly had been extremely upset since we had added the formula. I couldn’t wait to stop giving it to her. I now know that she has a cow’s milk sensitivity which explains why the formula was bothering her, but at the time I was unaware. She was gaining weight. She was getting about 30 ounces per day. She still wasn’t latching to nurse. I was starting to think we might have to exclusively pump but I was still determined to try and make it work. Lots of moms exclusively pump and I give them so much credit. It is a huge commitment. It is a constant, never ending labor of love. I knew that if I had to do it, I could, but I so badly wanted Sienna to get the additional benefits of being fed at the breast.

I continued my pump, nurse, pump routine in Philadelphia. I had more support there. My Mom was available to give Sienna bottles while I pumped so that I didn’t have to do both things. I still was pumping every 2 hours. We went down the shore for a few days with some family. There were many times that Sienna and me would both be crying while I tried to feed her. I would reluctantly hand her over to a family member with a bottle and go to the back room to pump. That’s the other thing about pumping. You are isolated. At least with nursing, I could be present and talk to people. I wasn’t comfortable pumping in front of people.

This was all wearing on me. I didn’t know how much more I could take. When we got back to Pittsburgh, I was so nervous. Haley was starting school soon. Jason was going to have to start traveling again for work. How was I going to do this?

Right before Haley began school, we had our first appointment at the Down Syndrome Center at Children’s Hospital of Pittsburgh. The Doctor who we met with was amazing. He said he was confident that we would turn a corner with breastfeeding. He said that sometimes it just takes a little while for babies with Ds to get strong enough. While we were at this appointment, Sienna started to breastfeed. She nursed consistently for about 20 minutes. It was the first time that had happened. At this point, Sienna was about 9 weeks old. She was awake more often and she seemed to be getting stronger. All of the sudden, she started latching consistently. Slowly, we started to drop the pumping. She was doing great. I was so relieved. Sienna just needed to get strong. I was so glad that we did not give up.

When Haley started school, Sienna was nursing more and doing much better. I could focus on Haley for a little bit which was a nice change of pace. She was such a good girl during this time. She was so understanding and patient. I was also glad that she was getting a break from our house. I was constantly pumping or nursing. She needed to get out and play.

We were still going to Sienna’s well checks to make sure her weight gain was sufficient. I had purchased a baby scale and I was weighing her every day. She was nursing around the clock. She nursed almost every hour. With all the nursing she was doing, it was surprising that she was not gaining a huge amount of weight. She was in the 50th percentile on her growth chart so our pediatrician was content. We also had a nutritionist coming to our house every other week through early intervention. Sienna’s growth pattern was inconsistent. Some weeks, she would gain a ton. Other weeks, she would gain a couple ounces. The nutritionist reassured me that she was doing great. She really seemed to be enjoying nursing and I was so happy to be done with pumping. Ironically, she started to refuse bottles around this time as well. At her 4 month checkup, my pediatrician suggested starting her on some solids a little early. He thought that might help her gain a little more. I discussed it with our nutritionist and she recommended waiting because Sienna did not have head control quite yet.

It was at this time that we also had Sienna’s appointment with her cardiologist. I was so nervous for this appointment. I was praying that her heart defect had closed. When we got there, I had an uneasy feeling. The nurse didn’t have the best bedside manner. They weighed Sienna and began to ask questions about her feeding schedule. When I told them she was nursing every hour, they said, “You need to stop feeding her every hour. That’s ridiculous.” I told them that our pediatrician seemed to think it was okay and that she was in the 50th percentile. Sienna started to fuss and I asked them if it was okay to nurse her. They said, “You were supposed to express milk and bring it in a bottle for her echocardiogram.” I said, “No one told me that and she doesn’t take bottles anyway.” Another nurse came in the room and said, “Didn’t you get my message? You were supposed to express milk.” “No, I didn’t get your message and even if I had, it doesn’t matter. She won’t take a bottle. Why can’t I just nurse her while she gets the echocardiogram?” “That won’t work. Besides even babies that refuse bottles will take one if you make them wait long enough to eat. I can see why she won’t take a bottle when you nurse her every hour.” At this point, I was getting upset. They were criticizing me for something I had worked so hard to achieve. Sienna was crying pretty hard at this point too.

After waiting another 15 minutes, the doctor came in. She repeated what the nurses had said. She was concerned that Sienna wouldn’t be still enough for the echocardiogram without a bottle. I finally insisted that we try letting me nurse her. I laid right next to her on the bed while the doctor performed the echocardiogram. She was an angel. She was still the entire time. After the doctor was done, we sat down and she explained that the hole had not closed. She was also concerned about her weight. She said that she needed to know exactly how much Sienna was eating and there was no way to do that if I was nursing her at the breast. She said that we had to go back to exclusively pumping with formula fortified breastmilk. She wanted me to write down exactly how many ounces she was getting per day. I started to get upset. I said, “But we have worked so hard to get her breastfeeding and there are so many benefits she will receive. Is this completely necessary?” She said, “What’s more important? Breastfeeding or her potentially needing open heart surgery?” What was I supposed to say to that? I cried the whole way home. I didn’t understand. We had worked so hard to get here and Sienna was doing so well nursing. We were finally in a good place. Sienna was in the 50th percentile. Why did it matter how much she was eating? She was gaining appropriately. Failure to thrive and gain weight can be an indication of congestive heart failure and if that was happening Sienna was going to need open heart surgery. If she was gaining the right amount of weight, then we could push off heart surgery. The longer we waited, the better. If we waited long enough, we could repair her heart defect in a cath lab. That would be a much better option.

I called my nutritionist on the way home. We were very close at this point. She walked me off the ledge. She said that some doctors just don’t understand the benefits of breastfeeding. Surely, there had to be more options. Immediately, we agreed that the nutritionist needed to increase her visits to weekly. She also said that we could add a smoothie to Sienna’s diet. We could use avocado, banana, and coconut milk. There would be tons of calories and good fats in it. I thought this sounded like a great alternative.

The next day I called the cardiologist’s office and explained our alternative plan. The nurse said she would run it by the doctor and get back to me. She called me back in about 20 minutes and said, “The doctor doesn’t approve of this plan. She needs to know exactly how much Sienna is eating and gaining.” I said, “But she is in the 50th percentile. Why is she concerned? I really want Sienna to receive the benefits of breastfeeding. It’s important to us.” The nurse said, “I don’t know how much more clear I can be. You need to stop feeding your baby at your breast.” I started to cry. I said, “Fine.” and hung up.

I lost it. I bawled my eyes out. I was at the end of my rope. I jumped to my support group. I posted a message on the 2016 birth group I belong to and also on the local Pittsburgh group. I wanted to know if anyone had a relationship with a cardiologist that was breastfeeding supportive. I also admitted that I didn’t know if I was making the right decision. Was my judgment clouded by how far we had come to get her to nurse? Was I not doing what was best for my daughter? Did anyone have an opinion about the cardiologist we were seeing? The comments poured in. Some people thought that I should listen to the doctor and not question her. Others said that I should get a second opinion. One local mom sent me a private message. She had been exactly where I was and she had a great cardiologist at Children’s Hospital. I decided we needed a second opinion. If this next doctor said that we had to stop nursing then I would listen, but I needed to at least try. We had not come this far to quit.

I had all of Sienna’s records transferred. Within a week, we were standing in front of a new doctor. He completely disagreed with the first doctor. He said there was absolutely no reason to stop nursing. He was happy with her weight. He wanted me to call in every 2 weeks with her weight just to be sure. He also agreed that adding the smoothie to her diet seemed like a great plan.

As soon as we added the smoothie to Sienna’s diet, her weight gain seemed to pick up. We had to tailor the ingredients a bit because the bananas seemed to constipate her. Eventually she was getting 5-12 tablespoons a day of the smoothie. We fed it to her with a medicine dropper. She still was nursing at least every 3 hours.

If I hadn’t trusted my instincts and gotten a second opinion, we would have stopped nursing for no reason. I know that Sienna’s first cardiologist wanted to know exactly how much Sienna was eating and gaining. I know that breastfeeding makes that harder, but I am glad I found a doctor that supported us and our plan. For the rest of my life, I will need to advocate for Sienna. I am her mother and I will fight for her.

Today, I can say that things are amazing. Sienna is now in the 75th percentile for weight and height. She eats everything you give to her. Her diet is full of variety thanks to our nutrition support. She has no feeding issues. She drinks out of a straw. She nurses 3-4 times per day. She is also talking! She says mama, dada, bye bye, all done, ball, and hi. I don’t know if it has anything to do with her breastfeeding, but I like to tell myself that it does. We worked so hard to get here in spite of so many obstacles. We didn’t give up and I am so glad we didn’t. I wanted to share our story because I remembered reading endless blogs at all hours of the night while I was pumping or nursing. To you moms out there, pumping, nursing, crying, it gets better. Do what’s best for you and your family whatever that is. If you need someone to talk to, I’d love to offer some support. Look at this big girl!

 

 

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When Haley met Sienna

As you can imagine, the next day was full of mixed emotions. People were texting wondering why I hadn’t sent pictures of Sienna. They wanted an update on the delivery. Was everything okay? I didn’t know what to say or how to respond. I wasn’t sure how to tell people. I wanted to focus on the joy, but at the same time I wasn’t ready to act like there hadn’t also been a feeling of loss. I can’t begin to explain how confusing it was for me. I wanted to celebrate Sienna, but I also had this immense feeling of sadness. I was facing more coexisting emotions. I asked my mom to tell most of the family. We told my in laws and they were just as amazing as my parents had been. They were bringing Haley to the hospital that afternoon.

When Haley arrived, she was wearing the big sister t shirt that I had purchased months earlier. She was beaming. She was so unbelievably excited. She came in and gave me the biggest hug. To her, this was the exciting moment she had been dreaming about. She was about to meet her new sibling. It’s amazing how quickly I was able to turn off all feelings of negativity. There isn’t much I wouldn’t do to protect Haley. I was also excited to tell her that she had a little sister. She had her heart so set on it. She was over the moon. She wanted to hold her immediately, but Sienna had been whisked out of the room for yet another test. This was her echocardiogram. They give them to every baby with Down syndrome because congenital heart defects are very common.

Haley was crestfallen that she wasn’t in the room. I pulled the presents out that everyone tells you to get for the older sibling. She is always a sucker for presents so that entertained her for about an hour, but she was starting to lose all of her patience. I kept sending people to look for the nurse. Finally, the nurse came in and said they were still waiting on her echocardiogram. After what seemed like forever, they finally brought her in the room.

Haley climbed up right next to me and reached for her sweet baby sister. When I looked at the pure joy and excitement on her face, something clicked inside of me. Haley had not skipped a beat. She met her sister and she loved her so much. She never wanted to put her down. Her innocence won me over. They were more alike than they were different. She had a sister and they were going to be best friends.

When you have your first baby, everyone tells you that you are going to be blown away by the love you feel for your baby. It’s an indescribable feeling. It overwhelms  you. When you have your second baby, everyone tells you that you are going to be blown away by the love between siblings. That’s exactly what happened with Sienna and Haley. They seemed destined for each other.

Haley’s innocence and love filled me with strength and joy. For the first time since I had heard about Sienna’s diagnosis, I felt like things were going to be okay. Haley didn’t see anything different about her sister. Why should I? Little by little, I was getting there.

I finally broke down my walls and started letting people in. I responded to texts. I composed a birth announcement. I thought it was best to rip off the bandaid and let everyone know with a text which explained that while we were surprised about her diagnosis, we were feeling blessed. We had a lot to learn about Down syndrome, but we knew that Sienna was our beautiful rainbow baby. I still couldn’t talk to anyone on the phone yet, not without breaking down. I was okay to text. I asked my best friend from high school to track down the phone number of a mutual acquaintance. It was a friend from high school that had recently had a daughter with Down syndrome. I wanted to talk to her. I talked to my best friend from college. She was the only one I felt really comfortable enough to bare my soul. She had suffered from infertility and miscarriages. She had been to hell and back to have her kids, and she knew every painstaking detail of my journey. It was okay to share my disappointment with her. She was disappointed for me too. We didn’t have to pretend.

The next 24-48 hours spent in the hospital were filled with ups and downs. We soon learned that Sienna had a heart defect, but the cardiologist made it seem like it might close on it’s own. I chose to believe that it would, because I didn’t think I was capable of handling much more. Breastfeeding was beginning to reveal it’s challenges for Sienna. Her low muscle tone was preventing her from latching and she never wanted to wake up. There were times that her body felt lifeless when you picked her up. That was hard. It was much more than a newborn sleeping. Her limbs laid at her sides limply when you picked her up. I was told it was her low muscle tone and that it was common for babies with Down syndrome to sleep 21 hours or more per day for the first couple weeks. Weight gain was a huge challenge in the beginning. I started pumping immediately at the hospital. She was only strong enough for bottles most of the time. This was also hard on me. Breastfeeding had been an instant bonding experience with Haley. I didn’t want to give up that experience with Sienna. So many things had been out of my control. I wasn’t willing to give this one up without a fight. Plus, I was learning that Sienna would benefit a great deal from the oral motor stimulation associated with nursing. She was most likely going to experience speech delays, but this was a way I could help her.  I plan on writing a whole other post about the breastfeeding experience. I hope it will help other moms who want to breastfeed. The doctors have been known to tell us rockin moms that babies with Down syndrome cannot breastfeed. They’re wrong.

When we got home from the hospital, the love story between Haley and Sienna continued. Haley couldn’t get enough of her sweet sleepy sister.

 

I started to wonder about when we should tell Haley about Sienna’s diagnosis. I knew the time wasn’t now, but Haley was a perceptive kid. She was nosy and listened to everything intently. My nickname for her had always been, “Ears”. I didn’t want her to just come up to me randomly one day and say, “Mommy, what is Down syndrome? You are always talking about it.” I also wanted to wait until she was old enough to understand. To the extent that she could understand. I continued to put it off.

One day, when Sienna was about 7 months old, I was grocery shopping with both girls. We were checking out and I noticed that our bag boy had Down syndrome. I smiled when I saw him. My sweet Haley pointed at him and said loudly, “Mommy, he is silly looking”. I froze. I couldn’t believe what she had said. The cashier, bag boy, and woman behind me were all looking at us. Haley had never made a comment about the way someone looked. It was just one of those things, but I wanted to scream at her. She’s just a kid and it was an innocent remark, but it killed me inside. It’s not my finest parenting moment. I yelled at her. I saw the fear in her eyes. She had never seen Mommy so mad. She kept saying that she was sorry. We got home and I went in her room with her and pulled out the books I had hidden in a closet for months now. I had ordered all the children’s books about Down syndrome. I told her that this was an important lesson to learn. God makes people in all different shapes, sizes, colors, chromosomes, but it doesn’t matter. Everybody is special and important and should be respected.

This was one of those isolating moments. I remember putting Haley down for her nap and crying. Is this what Sienna would face in her future? Would she be working one day and contributing to society? Would she face criticism based on her looks? Would she be hurt? It was devastating to think about. I remembered my motto, one day at a time. I decided to post on my support groups. It’s amazing the strength you can gain from other moms that you’ve never met. Some moms had similar stories. Other moms hadn’t told the older siblings about Down syndrome yet, but through my story decided now would be the time. For the record, the books I recommend are, We’ll Paint the Octopus Red and 47 Strings Tessa’s Special Code. 

It was a relief once she knew. I didn’t have to tiptoe around the words anymore. Some days, I think she understands what Down syndrome is all about, but mostly she just sees her sister. She wants to help her. She is present for Sienna’s therapy appointments from time to time. She does her exercises with me when the therapists aren’t here. I’ll see her repositioning Sienna’s legs so that they are in the proper position when someone is holding her. I’ll leave them alone for what Haley calls sister time. Every now and then, I will peak in the room and Haley will be helping her to transition into a position the right way just like I do with Sienna. She picks up her toys when she drops them. She grabs the food pouches out of the cabinet and gives them to Sienna when she is crying. She gives up any one of her toys to calm Sienna down. She hugs, sings, cuddles and does just about everything she can to make her sister happy. She does it all on her own. There is a love between them unlike anything I have ever witnessed. No one makes Sienna smile more than Haley. She is her hero. It’s a role Haley thrives in. Somewhere along the way, Haley decided that she was her sister’s protector. Nothing I did made it happen. Haley chose this path all on her own.

Not long after Sienna was born, I began to worry about the burden placed on Haley. We had decided that Sienna was our last baby before she was born. Immediately after Sienna was born, I felt like maybe we should revisit this. I thought it would help Haley to have another sibling when we were gone. This was before I knew all that people with Down syndrome were capable of achieving. I don’t know what the future holds for Sienna, but I know she is capable of greatness. I am putting no limits on her. When Sienna was about four months old, we went to the Down Syndrome Clinic at Children’s Hospital of Pittsburgh. We met with an amazing doctor who could not have been more reassuring about Sienna’s future. He spent over an hour with us addressing every possible concern we had about Sienna’s health. I asked him if he had any advice on when to tell Haley. He mentioned the children’s books but he also told us about his brother who had Down syndrome. His brother was responsible for the person he had become. His brother was the reason he was a doctor. He said that Haley would take this gift and do something special with it. His brother was responsible for who he was and he was grateful for that. It put it all into perspective. He saw his brother’s presence in his life as a gift.

Haley and Sienna’s love story is a mutual one. Sienna is shaping Haley and teaching her about unconditional love. Haley is teaching Sienna new things every day. Sienna knows that her big sister is her protector and that’s a gift for her as well.

 

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Sienna’s Birth Story

I have a hard time talking about this because it brings up so many emotions. When I think back to the day Haley was born, I feel nothing but joy. With Sienna, it’s more complicated than that. I had been having nightmares as the day got closer to Sienna’s birth. I kept thinking something could still go terribly wrong. I asked the OB if there was anything that could happen. She reassured me and told me that we were at the end and the baby looked great. I had 7 ultrasounds and they all showed a perfectly healthy baby. We were days away from the due date. I expressed concern over her lack of movement. They told me everything was fine. I asked if something could come up because we hadn’t done the genetics screening. Her response to that was less reassuring. She said, “If you had concerns, you should have gotten the genetics screening.” I said, “I don’t have concerns. I’m just asking if something could still come up. All my ultrasounds were normal, right?” “Your baby is measuring perfectly and everything looks great. Get some rest and get ready to meet your baby.”

Of course, now I know that my worries were warranted. It’s probable that Sienna wasn’t moving as much because she had Down syndrome and she had low muscle tone. It’s possible she was tired because she had a heart defect. That was another thing that never came up on any 1 of the 7 ultrasounds. When I tell people that I chose not to get a genetics screening, I feel judged. It’s the same puzzled, baffled, look every time I mention it. “Why wouldn’t you get the genetics screening?” Then I end up making that person feel uncomfortable when I tell them I had 4 miscarriages. Even my OB questioned me. The Ultrasound technicians questioned me. They even spent extra time looking for Down syndrome markers. None of them showed up. The truth is that the first trimester screening just looks for markers. Nothing is definitive. And if your markers are high, they want you to have an amniocentesis which has a high incident of miscarriage. I would never have agreed to it. I worried about so much the entire pregnancy and I just wanted to have the most relaxed gestation possible for this baby. I wanted to enjoy the pregnancy.  But when Sienna entered my world and they told us she had Down syndrome, I immediately blamed myself. When I really think about it, I made the decision for us about the genetics screening. I told Jason that I didn’t want the screening and I explained why and he agreed. He never would have argued with me after all I had been through.

The day before I went into labor with Sienna.

The day Sienna was born I woke up and my water had broken. It was wonderful knowing definitively that I was in labor. We called Jason’s parents and they came down to pick up Haley. We left for the hospital giddy. I was slightly emotional saying goodbye to Haley but she was so excited to be a big sister. I couldn’t wait to give her that sibling I had fought so hard for her to have.

When we got to the hospital, everything was very normal. They had to make sure my water had really broken and that I hadn’t just become incontinent. After a few hours, they admitted us. I still wasn’t having contractions so they decided to give me some pitocin to get things moving. As the contractions sped up, so did the pain and I asked for the epidural. Immediately, I felt relief but I also felt dizzy and my blood pressure dropped. The anesthesiologist had to give me a different kind of medication to get my blood pressure up. The baby’s heart rate was all over the place while this was happening.

I felt better but the baby’s heart rate still continued to bounce up and down. I was terrified. The nurses were downplaying it. They were intent on keeping me calm and they were doing a good job. As time passed, I got closer to being dilated and the nurses prepped me for delivery. Labor was fast and she came out in 4 pushes.

When she came out, she wasn’t crying. I looked at her and my first thought was that her head looked a little small and I got worried about microcephaly. My pregnancy took place during the height of the Zika virus. The nurses laughed and said she was fine but they were worried about her color and they ran her over to the UV light. Jason went with her and started to take pictures of her as they measured and weighed her.

My OB was talking to me and she started to ask me if I wanted any more children. My placenta wasn’t coming out on it’s own. It was possible they’d have to do a procedure to remove it and that could potentially lead to my uterus being removed. I knew this was a concern from the Asherman’s syndrome. I said that this was probably it for us but to do everything she could to try to avoid it. A few other doctors rushed in and did an ultrasound. To be honest, Jason and me were both nervous about this. Now looking back, I think we were so worried about me that we didn’t pay attention to what else was going on in the room.

After waiting 30 minutes, my placenta came out. They asked me if I wanted to breastfeed and I said yes. Sienna latched like a champ. She was beautiful. Jason and I gushed about how clueless we had been that she was a girl. We really thought she was a boy. We were both so happy to tell Haley she had a sister, which was what she wanted.

When I finished nursing her, I told the nurses to go get my parents from the waiting room so we could tell them. That’s when everything changed. I suddenly noticed the look on the nurse’s face that had examined Sienna and something was up. She said, “Before we get your parents, can I talk to you for a minute?”.  I knew right then and there. I looked at Sienna and I knew her eyes looked almond shaped. But she was beautiful. The nurse said, “Some of Sienna’s features can be indicative of Down syndrome and we think another doctor should come take a look at her to make the call.” My heart sank. It felt like the walls were closing in on me. I wanted to run and never look back. I wanted to scream. This wasn’t happening. This had to be some sick joke. After all we went through, this couldn’t be happening. We had already been through so much. Why was God punishing me? Hadn’t I been through enough? I immediately couldn’t breathe. The nurses gave me some anti anxiety medication but it did nothing.

Another nurse came into the room. She grabbed my hand and started to tell me about her friend who had a beautiful child with Down syndrome and how much that child had enriched her life. She started to tell me how Pennsylvania was one of the best states in the country for kids with disabilities. Sienna would be approved for medicaid and that would help with medical expenses. I shut down. Her kindness helped me from completely losing it but I wasn’t processing a single word. I asked her if the other nurse could be wrong. She said that it was possible and only the doctor would know for sure. In came the doctor. He could not have been more soul crushing. He examined her and said there was no doubt that she had it and when I asked, “What does that mean?” He started to list everything negative. He said she would have developmental delays. It would take her longer to walk and talk. He said she could have heart problems. She could be more prone to Leukemia. I shut down. Jason was detached. I looked at him and he looked like he was in shock. The doctor left and I cried. The kind nurse grabbed my hand again and said, “This baby is a blessing and she is beautiful.” I asked to hold her again. She was so beautiful. This was my baby and I loved her.

It was that moment that I remembered we still had to tell my parents. They were outside waiting. How was I going to tell them this? I started to cry. The nurse grabbed my hand. I asked her if she could do it. I just couldn’t do it. When they came in and the nurse told them, they both continued to smile and they held her and said she was beautiful and that it didn’t matter. I was so relieved and touched by their reaction.

Now, I look back on this day and I’m sad. I’m sad because Sienna’s birth was one of the saddest days of my life and Haley’s birth was probably the best day of my life. I have guilt. I know now that these feelings and reactions are normal. Imagine one of the best moments of your life snatched away from you. That’s what it felt like when they told me Sienna had Down syndrome.

I’m still very emotional thinking about it. I recently wrote myself a letter on the day I received Sienna’s diagnosis.

To Haley and Sienna’s Mom,
​​

know what you are thinking. Somehow, this is your fault. You pushed for this baby. You fought for this pregnancy. You were scared to death that something would go wrong during labor and it has. You should have just called it a day after the fourth miscarriage.

​You think that you just sentenced your family to something awful. It’s hard to see clearly now through all of the emotions you are processing, but she’s your baby. She is the same baby that has been kicking you for months, doing flips in your belly while you did yoga. This is your baby and she is the baby you are meant to have. You’re the mother God chose for her and you’re going to realize that in time. 
 
I’m not going to sugarcoat this. It’s going to be the toughest year of your life. Get your big girl pants on and prepare to work harder than you ever have. Right now, you’re a good mom to Haley and you’ve done so much to guide and influence her in positive ways. What you are facing with Sienna is going to be your biggest challenge. You are going to grow and evolve in ways that you never dreamed possible. 
 
You’re going to worry about Haley. You’re going to feel like a burden has been placed on her. You’re wrong. You’ve just given Haley the gift of a lifetime. She is going to learn empathy at an early age. She is going to be Sienna’s fierce protector and it’s a role that she will gravitate to all on her own. You will watch the most amazing love and bond grow between the two of them and it will move you. It will make you realize that they are meant to be with each other. 
 
Your marriage is going to face it’s toughest year. You will handle this in different ways. You will feel isolated and alone at times, but that won’t last forever. Realize that you are both doing the best you can. There is no right or wrong way to deal with this. You will both process it at different speeds. Just know that you’ll both get there. Be patient and kind to one another. 
 
Let yourself cry. Let yourself grieve. Don’t feel guilty. You are going to become so strong. You will protect your girls with a fierceness that will move mountains. In addition to being challenged, you will be rewarded. Sienna will change you and that’s a good thing. You will learn to take things as they come. You will appreciate the little things. You’ll stop looking too far ahead and you’ll realize that every day is a gift. You will work hard to help Sienna and it will be gratifying. You will celebrate her accomplishments. She is a warrior. She will surprise everyone. Don’t let the doctors limit her. You will meet amazing doctors but you will meet doctors that don’t see anything but Down syndrome. Trust your instincts. You know your child and you know what’s best for her. 
 
You will be welcomed into an amazing community. It will take you time to feel like you belong there, but you will start to feel like you have another family. You will ask them for advice on some of the biggest obstacles you’ve ever faced. You’ll be rewarded with friendship and love.
 
One day, you’ll wake up and this won’t seem like some big nightmare that you’re recovering from. You’ll stop seeing Down syndrome and you’ll only see your baby. You will think she is perfect in every way. You’ll always be worried about her, but you’ll do everything you can to empower and strengthen her. That’s your job as her mother. 
 
I know right now it seems like life is never going to be the same, but that’s true with every child. It gets better. Motherhood is the hardest and most rewarding job you’ll ever have. ​So, put those big girl pants on and buckle up for one hell of a journey.
I wish I could go back in time with the perspective I have now, so that the day of Sienna’s birth was as joyful as Haley’s had been. No matter what happens, I will always carry that guilt with me. I know it’s normal, but it still doesn’t change my feelings. I wish I could go back and yell at the doctor who painted such a negative story of life with a child with Down syndrome. Some days, I am tempted to walk into the hospital with Sienna in my arms. I want her to wave at him and say hi like she does to every person I walk by in the grocery store. I want to say to him, “You were wrong about this baby.” I want to find the nurse from the day she was born and hug her and thank her. She was right. Sienna is a blessing and she’s beautiful.
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