Breastfeeding Tarenne

The primary reason that my husband and I decided to find out prenatally, if indeed our daughter had Down syndrome, was to prepare. Out of all the things that we learned, it ended up that the only difficulty we had to deal with was feeding our baby. The simplest, most basic task became a battle for us and for her. I remember thinking that if we were doing this is the cave man days she would have perished, and my heart broke. I constantly asked God why we had to go through this struggle, and I never got an answer, however in the end He did answer our prayers and she learned to nurse at 14 weeks old.

I often wondered if I “cursed” myself by knowing too much, by even having the knowledge that this might be an issue. Upon birth she latched on and nursed like a champ for several minutes. That was one of the benefits of knowing her diagnosis beforehand; no one was able to steal those first precious moments of joy from us. We were able to dictate every move that the hospital staff made with a carefully written birth plan. She was immediately handed over to me and we established skin to skin contact as she suckled at my breast and received the ever so important colostrum that my body offered. We were off to a great start!

However over the next few feedings she refused to latch on. It was almost as if while her brain took over her basic instinct was lost. She was a very sleepy baby and it seemed as if that need for her was stronger than the need for nourishment. The lactation consultant came in to guide me at each feeding, even though I was currently still nursing a 22 month old toddler at home. My expertise quickly fell to insecurity as my attempts were met with failure for this special child of mine.

A hospital pump was brought into the room so that my body would be told to continue to produce milk even though my child refused to partake of it. A nurse came in with a 6 pack of sterile water bottles, and instructed me to fill those up as I pumped. I looked at her as if she was crazy, and told her that no new mom would be capable of filling up the bottles and instructed her that your milk doesn’t come in for several days. Later the lactation consultant told me that she had implemented training sessions on pumping, so that no new mom would be discouraged by incorrect information given by the staff. That was to be Tarenne’s first influence in the world.

The lactation consultant also educated me about advocacy. I was exhausted and just wanted to go home after the 2nd day of hospitalization. However the hospital’s pediatrician refused to dismiss Tarenne until she had a bowel movement. The lactation consultant went head to head with her, trying to educate the doctor on bowel movements of breast fed babies. Tarenne’s tests had assured them that were no issues with her organs, and the lactation consultant said it wasn’t fair of them to treat her differently because she had Down syndrome. So quickly already I was learning the different standards my child would face. We finally agreed that they could give her a little bit of formula so that she would produce a bowel movement. This would be the only formula that would pass by our child’s lips.

With the lactation consultant’s help we decided that we would use the Hazelbaker finger feeder to get my pumped milk into Tarenne’s system. We wanted to mimic nursing as closely as possible, and this feeder would provide her with our touch, while we could use our finger to stroke her palate and promote the sucking response. We went home with a hospital grade pump and this special feeder.

Once I was home, Darrah my 22 month old, immediately wanted to nurse, after 2 days of Mommy being away. My milk had dried up during my pregnancy when I weaned Darrah the first time. However I was truly her attachment object and she had started to nurse again for comfort during the stressful time of our move, and had kept it up until now. She continued to nurse over the next few weeks until my milk came in and my supply was fully established. The surprise of having a new element to her “dry pacifier” confused her and she quickly lost interest and weaned herself shortly thereafter. Looking back I think God knew that I would need her help to establish my milk supply for Tarenne.

In preparing for her birth, we had developed a network of people to support us in Lansing, a city to which we had just moved. God gave to us a pediatrician whose son has Down syndrome, and his wife, who had been a nurse practitioner and successfully had nursed their child. She became my cheerleader, and Dr. Froehlke whole heartedly endorsed our efforts to give our baby the best nutrition possible. However due to her sleepy nature and lack of a sucking response she wasn’t gaining weight and office visits and weigh-ins became a routine of her first few weeks. My husband sweetly took over the middle of the night feedings, but during the day I usually insisted on putting her against my bare skin to use the feeder so that we shared that skin to skin nursing experience. The Hazelbaker finger feeder was a very slow and time consuming method of eating for our daughter, but we were insistent on doing everything it took for her to transition to the breast when she was ready.

After 5 weeks of exhaustion; from pumping, around the clock feedings, and using the finger feeder, we decided to introduce bottles of breast milk for our girl. This was much easier for her, and provided some “free time” for my husband and me. She was also gaining weight appropriately so we were then able to finally sleep through the night. I would still put Tarenne to the breast at each feeding before giving her the bottle. Sometimes she would latch on momentarily; sometimes she would nurse for a few minutes, and sometimes not at all. After I fed her the breast milk in a bottle from the prior pumping session, I would keep her on my lap as I pumped so that the emotional bonding that is so important to breast milk production remained intact. It worked amazingly well as my body produced enough milk to feed about 3 babies each day.

Joe and I saw our freezer filling up with breast milk and decided that a deep freezer would be a wise investment of our money. My Father-in-law about died during his visit when his trip to get ice from the freezer was met with bags of milk which we offered to allow him to place down in his drink. He politely refused. During our trip to Sears to get our new freezer the salesman was embarrassed as he assessed our needs and Joe told him our planned use was to store breast milk. Our reasoning was that if Tarenne never did learn to nurse, we could store enough milk in the first 6 months so that she would have Mommy’s milk for her first year.

We had only been in Lansing for a few months and did not know a lot of people in the area. Our families sweetly took turns visiting during the first several weeks, to help us with Darrah and to meet Tarenne. In order to keep up the rigorous schedule of pumping and feeding the baby, we let a lot of the housework go and just focused on our girls and their basic needs. We kept up with Darrah’s Gymboree playgroup schedule but only ventured out otherwise when necessary. Since Tarenne was sleeping so soundly we didn’t have to worry about her demanding to be fed, and we could plan her feedings around our occasional outings.

I was talking on the phone to Dr. Froehlke one afternoon when Tarenne, who was 14 weeks old by then, started to fuss. I put her at my breast, and she started to nurse. She continued to do so as he talked to me about some tests that they had run on our girl. I whispered to him that she was nursing, and he said he didn’t want to hang up and continued to talk to me about his family and his son. Before we knew it she had completely a full nursing session at the breast. He hooped and hollered with me, and told me to hang up and call Joe and then to call his wife! By the time I called Joe and my sister, he had already called his wife. He couldn’t wait for me to call her to give her the news myself!

It was that kind of support and encouragement that kept Tarenne and I trying to establish the nursing relationship. From my husband, to our pediatrician, we were surrounded by people who knew that nursing was the best thing we could offer our little girl who needed that nutritious edge more than anyone. Tarenne nursed until she was 18 months old, but I would have nursed her forever after our hard won battle!

Tarenne and I with Dr. Froehlke. He was an angel for all of us!


Jodi Reimer said...

Just wanted to say hi. I have a son with DS and we have a blog too.

Cristina said...

I am a special education teacher from Romania, Eastern Europe. I was surfing the net and accidentally landed on your blog. I find it thrilling. I myself am the happy teacher of a 12-year-old DS girl, so I share your intense curiosity and dedication in how to make them ready for the world and how to give the world an insight into how wonderful they are. Keep writing!

Milk Mama said...

Oh those photos are beautiful! I am amazed by your dedication to nurse your daughter!!! It's amazing! And you're right that she of all babies would need the "nutritious edge" that breastmilk gives babies! I'm glad that you and Tarenne won that battle and she became such a great nurser! Congrats! I'm so glad to read that it worked after fourteen weeks of hard work! I love that finger nurser. That is such a great product. I searched it and a lot of places weren't selling it any more. That's sad because it's such a great product. Thankfully Anna was a great nurser from day one and had no problems that would make it hard for her to nurse. But you never know... maybe baby number two will have a hard time, but I hope not. But in case, I'll keep this in my mind.
Your doctor and his wife were wonderful! What a blessing! Especially since it seems that so many pediatricians don't know about or don't care about the the benefits of breastmilk and breastfeeding babies and they have no real knowledge about that subject. That was totally God!