i nEver imagined this would be the last Picture of mommy feeding you my bReastmilk....
When I took this picture I could have never imagined how important it would become to me, how it could have so much meaning, how it could make me so unbelievably happy but at the same time how utterly devastated I would be when I realized this was the last time I would give my son my breastmilk. When we took this picture it was the first time I got to hold my son while feeding him after open heart surgery. If you know our story you know that my son had open heart surgery in early January. About 3 days after surgery we were able to hold him. I wasn’t able to hold my son for the first 5 days of his life as we were separated immediately after birth. Rycker was diagnosed with Trisomy 21 or more commonly known as Down syndrome. He was also diagnosed with a rare congenital heart defect called atrioventricular septal defect(AVSD for short) when I was 24 weeks pregnant. It was some of the scariest news a parent could get. All the sudden our worlds came crashing down. Everything I had imagined, the boy I had imagined, the child that would get through life with ease, the child that would be healthy, the child that wouldn’t be judge by his looks... were all gone. I grieved for that little boy I imagined and not long after the first wave of emotions, I become hopeful for the boy that would be. My sweet Rycker. After all the time I spent preparing myself and to be honest preparing myself for the worst, nothing could have prepared me for the day I would meet Rycker, my sweet boy. Nothing could prepare me for the love I would feel and how everything and all the doubt I had felt before would just automatically be erased the moment I first heard that sweet cry and saw that face. Rycker was immediately transported to a local children’s Hospital. I saw my baby for 10 minutes a few hours after he was born. I did not get to hold him until he was 5 days old. Oh did I yearn to hold him. Since we were separated I had to start pumping my breastmilk immediately after birth. I saw a lactation consultant who told me I might have trouble breastfeeding my baby due to a lazy latch and low tone because he had Down syndrome. They didn’t change my mind one bit. I was going to give him my breastmilk even if that meant by bottle. The first day I got to hold my son was unlike any other feeling I could possibly describe. A void had been filled, a peice of me a piece of my heart made whole. Fortunately he did not need the open heart surgery they thought he would need until he was 6 months old. So we were able to go home before he had his open heart surgery. We were estatic! Shorltly after returning home we were told by his doctors that we could not try breastfeeding yet as his volume of feedings needed to be monitored. Although I was disappointed, I stuck with bottle feeding him my breastmilk. Not long after we came home from the NICU my milk supply drastically dropped. I was only making about 6-10 oz a day which wasn’t even half of what Rycker needed (at 22 oz per day) So we had to start supplementing. We would give him a few bottles of formula which he did not do well with. He would spit up all day long and have atleast 3-5 bowel movements a day. The formula just didn’t sit well with his stomach. Luckily we were able to meet our “milk saving angel” as I call her that we met in a FB mommy group who donated breastmilk to us! ( She is now Rycker’s god mother!)We were able to start giving Rycker 100% breastmilk again. Even though it wasn’t all mine it was a start! I then started taking every breastfeeding supplement under the sun to help increase my supply. I did so much research and learned just about every trick and trade in the breastfeeding world. About 2 months after we came home,it was the beginning of October, we were told we could start breastfeeding again. I was elated! We had tried here and there to breastfeed but he would never stay latched more than a minute or 2. We had our first breastfeeding assessment October 5. Our LC told us that Rycker was a “disorganized” eater and basically to just stick with giving him my breastmilk by bottle. I left the doctors office in tears that day. I was so disappointed and just felt like I had failed my son. I felt like the only job that I should be able to do I wasn’t able too. I wanted to be his sole source of nourishment. Especially with my supply lowered and having to supplement with formula I felt like I completely failed my son. After that appointment I felt more determined and motivated then ever to be able to breastfeed my son!
It took weeks of patience, persistence, time, and tears. There were days where he would scream HIS head off. There we days I would scream MY head off. After 3 almost 4 weeks of putting him to breast constantly and consistently he breastfed for the first time 15 minutes uninterrupted on October 22nd 2017! As I said before he would pull off every 1-2 minutes and now he maybe pulled off 1-2 times in 15-20 minutes!It took a lot of work and a lot of patience. We did it. We had a challenge and we overcame it! I couldn’t have been more proud not just of my son but really of myself, of our team work! It made me feel like we could handle anything that was thrown our way. Now almost 3 months later my son had open heart surgery on January 9th. I never imagined that on January 8th that would be the last time I would ever get to breastfeed my son. Shortly after Rycker’s heart surgery he started having complications. We found out after a heart cath procedure done by the director of cardiology, that the pressures in my sons heart were the highest they had ever seen in their career. Immediately it took me back to that moment when we first found out my son had the heart defect. We were told if it didn’t improve that he might need a heart transplant. Rycker’s dad immediately grabbed my hand and squeezed. We had never been so scared. A few days before the heart cath procedure Rycker had a swallow study done. We soon found out that my son was aspirating all of his breastmilk. The speech therapist told me that I would have to stop breastfeeding and I could no longer give my son breastmilk. After everything we had been through that was my breaking point. All the sudden I couldn’t help the tears from rolling down my face. I was devastated. How could we have worked so hard to breastfeed only for it to be taken away just in an instant. I didn’t understand there was never any sign of him aspirating. So I went on to ask if we could thicken my breastmilk. I was told no by multiple speech therapists and even got into a fight with one of them after she told me “Do I just want my son to die!” How could someone say that to me after everything we had gone through. I never thought our breastfeeding relationship would end so soon. Especially after almost giving up myself and working so hard to have a breastfeeding relationship! When we took that picture above, I had no idea that would be the last time my son had would ever have my breastmilk by bottle. After trying thickened formula and not doing well with it, he had to have a feeding tube put in. I am hoping that this is all just temporary and that one day we will get to breastfeed again. Currently he is not allowed any oral feeds. He has been really struggling to breathe the past few days. To say it’s been a long few days is an understatement. My point in writing this is not only to tell our story,Rycker’s story, and how much that picture means to me now but to have all breastfeeding mommy’s cherish their breastfeeding relationships. Take a minute the next time you breastfeed and just look into your little ones eyes. Snuggle them a little closer, give them a few extra kisses and just remember Rycker’s story. Remember that some mommy’s unfortunately no longer have a breastfeeding relationship with their littles or maybe have never been able to have one. So please don’t take it for granted and cherish every moment!
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About tHe Heart mom,the Breastfeeding mommy, and writer
After learning and researching everything there was to know about breastfeeding and all things related. It became my passion. I wanted to help other moms who struggled in their breastfeeding journeys. I wanted to help other mom overcome their obstacles. So I decided that I would become a certified lactation counselor and start my own business to help mommy’s in their breastfeeding struggles. That’s where the idea of The Breastfeeding Mommy came in. I wanted to have a place where we could all come together and where I could put everything I have learned in my own breastfeeding journey and through my studies for my CLC. I hope in some way however little I can help as many mommy’s as possible with our website and lactation services. Please feel free to contact us if you ever have any questions or concerns! That what we are here for, to help you!
Bridget Rohm Creator/Blogger/Writer
The Breastfeeding Mommy
Website and Blog