If you would have asked me one year ago if I thought I would be celebrating Down syndrome Awareness Month with the ferocity and appreciation I have today, the answer would have been, “Hell no.” It’s amazing what can happen in a year. So much has changed, especially myself. For any mothers out there still struggling with the diagnosis, hang in there. Be patient and kind to yourself during your journey. I don’t know what the future holds, but I have learned to celebrate each day. Kids grow up way too fast. During Sienna’s first year of life, I chose to live in each moment. We conquered one challenge at a time and that way of thinking has translated into a higher quality of life for all of us. It’s a transition for which I am grateful.
As most of you know, last week I spoke with a group of students studying to become genetic counselors. One of the questions I was asked during their class was, “How have your dreams for your child’s future changed since her diagnosis?” It’s an insightful question and it forced me to dig deep. What dreams do I have for both of my kids and their future?
I thought about how I was feeling while I was pregnant with Sienna. It’s different with your second child. You already are aware of the sense of magic that comes with motherhood. You’re more selfless. You know the sacrifices you are going to have to make, and you’re prepared for them. Before Haley was born, I had dreams about her future. After she arrived, those dreams changed. They’re evolving every day based on what she wants out of life. The truth is her dreams belong to her, not me. All I want for her is happiness in life. I want her to do whatever it is that will bring her that. Whether she wants to be an astronaut, a makeup artist, a mom, an ice cream shop owner, or all of the above like she does now, I am going to give her the tools she needs in order to achieve those dreams.
Is that different for Sienna? I thought and thought on it, and I kept coming back to the same place. It is no different. Her dreams for the future will grow and change with each passing year and I will let her know that she is capable of doing anything. I will give her the tools to accomplish her dreams and I will stand on the sideline cheering her on, advocating for her all along the way. I will fight for both of my girls every day.
If you would have asked me 10 years ago if this is the direction I saw my life going, I would have laughed in your face. Would I be living in Pittsburgh? Ha, fat chance. Philadelphia is the best city in the world. Why would I leave here? Would I have quit my successful career in order to stay home and raise children? Ummmm, have we met before? I love working and I would never give that up. Would I be raising two girls, one with special needs? I can’t do that. I give people so much credit who can, but that’s not me. Also, I am going to be a boy mom. I’m a sports addict. I hate princesses. Well, here I am living this life we got (pun intended) and traveling this unexpected journey and guess what? I am happy. I am blessed. Being a mom to both of these girls enriches my life beyond my wildest dreams. One of my dreams in high school was to become a writer, and here I am pursuing a passion I had long displaced. My girls led me to this place and I am grateful to them for that.
Thank you for reading all of my posts on Facebook and Instagram this past month as we celebrated Down syndrome Awareness month. As we transition into November, I will be getting back to weekly blogging, still sharing stories about this life we got.
When you become a mom for the first time, your life is never the same. No matter how prepared you are, the questions come. Is this how much the baby should be sleeping? Is the baby eating enough? How much weight should the baby be gaining? How many wet diapers should she have a day? Am I doing this right? I remember calling and texting my best friends who were already mothers. Of course, I utilized the internet, but talking to other moms is a rite of passage. My cousin is pregnant right now with her first baby. She texts me with pregnancy questions. I can’t wait to get the text messages and phone calls once her baby arrives. I will be so happy to share my knowledge with her. It’s what we do as women. We support each other.
Before Sienna was born, I was excited to experience the infant stage again. I was going to enjoy the ride, because I wouldn’t be as worried. I wasn’t a first time mom anymore. But like everything with Sienna, what I expected to happen and what actually happened were two very different scenarios.
I’ll never forget how helpless I felt when I got home from the hospital with her. My husband and I were processing Sienna’s diagnosis in different ways and at different speeds. He has always been more introspective. He chooses to digest trauma internally while I seek connection and understanding from others.
I had announced Sienna’s birth and her diagnosis on Facebook days after she was born. I didn’t want to dance around it. I wanted everyone to know. While on the outside it appeared that I was handling everything with smiles and blessed hashtags, the truth is I was terrified. The congratulatory posts littered the thread. “Congratulations. She’s beautiful.” “God chooses special parents for special babies.” Did people really think I could do this? No one knew what I was facing. There was no friend to text with the questions I had. My friends didn’t know how to advise me or what to say. My Mom tried to support me as much as she could, but this was my journey. I felt alone.
What I soon discovered was that I wasn’t alone. The Facebook post announcing Sienna’s birth and diagnosis put the wheels in motion that would connect me to the Down syndrome community. I was soon connected to a local Pittsburgh mom that had a young child with Down syndrome. With that first connection, Pandora’s box opened before my eyes. Before I knew it, I was handed the tools I needed to break free of my isolation.
Within hours of making that first contact, support and understanding found me on Facebook in the form of the Down Syndrome Diagnosis Network or DSDN for short. Their mission statement is simple. You’ve got this and we’ve got you. As I was welcomed into my birth group, I was immediately connected to hundreds of mothers from around the country. As I scrolled down the group’s private page, I realized that the connection I was seeking was right in front of me. This was my new tribe.
“I can’t wake Sienna up to eat. I have tried everything. We’ve done cold wash cloths, a bath, feeding her in only a diaper. Nothing seems to be working. I’m worried. She needs to gain weight. Does anyone have any tips?”
The advice and support followed.
“It will be okay. It gets better. Try expressing breast milk and putting some in her mouth.”
“They’re so sleepy in the beginning. It’s normal. Did you buy a baby scale yet? You can get one on Amazon and it will give you peace of mind. This is the one I recommend. Hang in there, Mom.”
“Does she have a heart condition? There’s another group for heart mammas that is really helpful.”
“Do you know our kids have a separate growth chart? Here’s a link to it. Show your pediatrician.”
Every day I had a new concern, and every time I posted something I was rewarded with support, love, and knowledge. What issues did we face…..when should we start early intervention, what therapies were the most helpful, breastfeeding struggles, constipation, thyroid concerns, chronic respiratory infections, etc. The questions didn’t stop as Sienna progressed out of her newborn stage. I still find myself having concerns and questions, and there are moms in my group who are a few months ahead of me on this journey and they are armed with information.
This past weekend, I finally had the chance to meet some of the women from my tribe as we convened in Chicago for the annual Rockin Mom Retreat. My birth group is not the only one. Every year there are new babies born and new groups are started. There are thousands of moms in our community. It all began because one amazing mom wanted to create support for new mothers. This Rockin Mom is Jen Jacobs and she is an example of what we as women can create when we choose to unite and lift each other up.
I was nervous to venture to Chicago on my own. I was leaving the girls, something I had never done before. While I knew these women from behind the screen of my computer, I had not come face to face with them and I was uncertain about what to expect. I had a safety net in my friend, Beth. She was a fellow Rockin Mom, but we also went to high school together. While we were not close in high school, simply because we ran in different circles, we were immediately reconnected through the births of our daughters. Beth is 6 months ahead of me on her journey and her wisdom and advice have been steadfast since the day Sienna was born. I was thrilled to get the opportunity to unite in person and face this weekend together. This was me the morning of the retreat heading to the airport.
When I arrived at the hotel, a sea of rockin moms filled the lobby. I looked around the room to see moms sporting unicorn gear (something too hard to explain but it is our mascot of sorts), moms hugging each other, some crying, some laughing, and everyone smiling. Emotions were high and there was an intangible feeling of kinship permeating the air. Every person I saw greeted me with warmth. As Beth and I stood in line to get our welcome packets, we immediately began connecting with other moms. Beth and I are in different birth groups so we had varying connections, but there is an overwhelming sense of family among everyone.
Friday night was our first glimpse into what the retreat would look and feel like. We decided to check out the exhibits first, not knowing what they would entail. As I turned the corner, I saw tables with exhibits from organizations that had the resources to empower me as Sienna’s advocate. Julia’s Way was a nonprofit group that had encouraged me in my breastfeeding journey. They were there passing out resources. GiGi’s Playhouse was a nonprofit that opened Down syndrome achievement centers around the country. We do not have one close to us here in Pittsburgh, but there was information on how to raise money to open a GiGi’s. Signing Time was there with resources about learning ASL and how to incorporate signing into your daily life. There were authors there as well. Mardra Sikora was there sharing copies of Black Day: The Monster Rock Band, a book that she had cowritten with her very successful, inspiring adult son with Down syndrome, Marcus Sikora. Mardra also cowrote The Parent’s Guide to Down Syndrome with Jen Jacobs. This book quickly became the bible in my house during the beginning of our journey. There were many other inspirational organizations there, but these were the ones that stood out to me personally.
After the exhibits, it was time for a reception dinner. My table had women from all over, including a mom who had ventured all the way from England to be a part of this experience. There was a veteran at my table, a mom who had been at the retreat before and had raised thousands of dollars this year, because she believed so much in the experience. Her family was from Texas and they were currently misplaced from their flooded home but she still felt the need to be at this retreat. That’s how meaningful the experience had been. We shared pictures of our children. We discussed their strengths and weaknesses. I learned some therapy techniques that I had not heard of prior to this. One mom even shared a video with me and allowed me to send it to my physical therapist to see if we could look into it for Sienna.
The connection as mothers was instantaneous. We all have one thing in common. We would do anything for our kids and we want to empower each other on our journeys. Do you know how rare that is in this day in age? I had never really thought about it, but I have been gifted with something very special. Sienna is enriching my life. Had she not been born with Down syndrome, I would never have experienced something this special. The sense of family in the Down syndrome community is rewarding and fulfilling. I’m not saying this path we are on is an easy one, but this is one of the beautiful aspects of this life.
After dinner, Jen Jacobs introduced us to our keynote speaker, Rachel Coleman, who is the creator of Signing Time. If you have never heard of Signing Time, it’s a wonderful educational children’s program that teaches kids signs using music and imagery. I expected this talk to be about sign language. While that was related to Rachel’s message, her story was about so much more than that. As she shared her experiences as a mother of 2 children with special needs, the room erupted into tears and camaraderie. I thought about trying to summarize what she did and the emotions she brought out in us, but it’s impossible. Either it’s impossible or I’m just not that great of a writer, but I know my limits. I was so inspired by what she said. There have been so many times over the past year that I have had an internal victim dialogue with myself. Why me? Why us? After hearing her message, I’m going to try to stop doing that. Everyone has their own struggles in life. Life is hard. Everyone’s life is hard. I don’t own the rights to hardship.
She sang this song and there was not a dry eye in the house. I was ugly crying, Kim Kardashian like ugly crying.
If you don’t listen to the song, here are the lyrics that brought out my ugly crying.
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly Or is it now my role to simply believe? You’re just one of those mysteries That may never be solved in time But you do — you do — you shine And Sammy will do what Sammy will do when Sammy is ready to do it
And just to really hammer the ugly girl crying point home….
I strongly suggest looking up Rachel Coleman’s story and reading it from her perspective, because I cannot possibly do it justice. She captivated us for 90 minutes and I could have listened to her talk for 90 more. I was spellbound.
And as if that wasn’t enough crying, Mardra Sikora shared a letter she wrote to herself about her son, Marcus titled, When He Grows Up. Here is a link to it.
Mardra’s presence and her letter were truly uplifting. I’d be lying if I didn’t admit that I always worry about the future. Sienna has taught me to be present in each day and not to look too far ahead. I have no idea what her future has in store, just like I have no idea what Haley’s future has in store for her. Seeing Mardra and the way she speaks about her son makes me realize how much my daughters are both capable of achieving. It’s something that room full of women needed to hear.
When Mardra was done, Jen gave us all charm bracelets. We would be receiving various meaningful charms throughout the weekend. I was absolutely blown away by the thought and detail that went into planning this weekend. Jen and the women who put this together truly wanted to lift us up. As Jen was wrapping up the night, her phone started to receive a FaceTime call. She let out a shriek over the microphone as her phone was ringing. She turned her phone on all of us and said that it was the cast of Born This Way. It was a beautiful way to finish up the evening. Don’t get me wrong. That wasn’t the end of the evening. Beth and me made our way to the bar and rocked out with our fellow moms. That part of the evening is something I won’t be sharing on my blog, because some things need to be just mine.
The next day I met more women from my birth group. I hugged familiar faces and shared in the experience with them. We were inspired more by Nancy Gianni, the founder of GiGi’s Playhouse. She is another example of what a mother’s love can accomplish. She truly wanted a place for her daughter to be supported and thrive. Because of her, these Down syndrome achievement centers are all over the country and more are popping up. I am very interested in seeking information about opening one in Pittsburgh. The Pittsburgh Ds community is incredibly supportive. I really feel that a playhouse would flourish here and so would our children, but that’s another blog for another day.
One of the best portions of the weekend, for me personally, was the breakout session. We all could choose which session we wanted to attend. I chose to attend the writing/blogging session hosted by Mardra. She armed us with information and inspiration. I met other moms that enjoyed writing. We all shared our goals and offered support and resources to each other. Again, this was another example of more women lifting each other up.
After the break out sessions, we all worked on service projects. We heard from two moms whose children fought the Leukemia battle. Moms facing similar circumstances stood up as we cheered them on. More tears. When your child receives a cancer diagnosis, Down syndrome really seems minimal. A cancer coalition is in the works and we created bags for these families and wrote supportive notes to include. We also put together welcome packets for new families in the Ds community. I remember receiving one shortly after Sienna was born.
The rest of the day involved some pampering, tips on how to take care of ourselves, and lots of group photos.
We wrapped up our day at Joe’s Live for some stand up comedy and an 80s hair band. I made more connections with moms over beer and laughter. I don’t remember a lot from the evening, but I know I had fun.
I thought I was all cried out until I got home and a package from my mom was waiting. She had purchased an Alex and Ani bracelet. The inscription read, “Since ancient times, sea-travelers have journeyed to unexplored territories, answering the call of the unknown. Their discoveries are the stuff of legends and their adventures mapped the world as we know it. Like the fearless explorers who ventured off the beaten path, lose yourself to the will of the journey, and follow the divine accidents that steer you to treasures untold.” Sienna is a divine accident and I cannot wait to see what treasures she has in store for all of us.
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 firstname.lastname@example.org 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!