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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5 Comments

  1. Shannon, you are one strong woman. After reading this blog, I feel like I am learning more about Ds and the struggles we don’t see. I am glad that you are sharing this with myself and others that perhaps are in the same struggle as you, to let them know there is hope. “The struggle is real”. & with determination you can overcome !

  2. OMG, I don’t even know how to begin. You certainly are a strong woman but my God you have been through so much. I remember my daughter in law, she gave Charlie breastmilk through the pumping, she used to pump in the car driving to work because she also knew it was better for him. She is a nurse at CHOP, which helps somewhat. I kind of have a feel for what you went through although Charlie had different issues. He had infantile spasms, which were so subtle you could hardly notice but my daughter in law did. At one point Charlie was getting 2 needles in his legs a day for a month. It was insane. Anyway while he was having these spasms it did hold up his development, you could see he wasn’t quite there. When it was finally under control, what a difference, he really started to progress. I am so happy that Sienna is saying words, that is incredible, Charlie just started recently. I really need to start keeping a journal of dates with his milestones. All I can say is Sienna and Hayley have the BEST Mommy they could ever have. I am so proud of you and your family and my son and his wife. You are all going to Heaven. I will keep you in my prayers always ! BTW, Shannon, I just remembered this, did you notice Sienna hardly ever cried as an infant. Charlie hardly ever did and I used to say to Jeff, most babies cry so much more than Charlie does. It was almost like he couldn’t get the sound out. Was just wondering if maybe that is a DS thing. He cries now though!!!! haha

  3. I am sure this blog helps many mom’s struggling through what you describe. Sienna is lucky you had the fortitude to seek that 2nd opinion, after the doctor merry go round you and Jason had to deal with. Having the support of family is so important and friends also. It is good that there are quite a few support groups for families that are struggling with issues plus trying to make the right decision for their child. You won this battle and by sharing on your blog it will help many others! I love your determination.

  4. I am sure this blog helps many mom’s struggling through what you describe. Sienna is lucky you had the fortitude to seek that 2nd opinion, after the doctor merry go round you and Jason had to deal with. Having the support of family is so important and friends also. It is good that there are quite a few support groups for families that are struggling with issues plus trying to make the right decision for their child. You won this battle and by sharing on your blog it will help many others! I love your determination.

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