I had successfully breastfed 3 other girls with no problems. I felt like a professional. It should be easy fourth time around...
When Aubrey was born, she went right to the NICU. She was very unstable and so they did a nasal feeding tube during the first day. I can't remember exactly when they took it out, but it wasn't in more than 12-18 hours. After which she was stable enough to try breastfeeding/bottle feeding or being held. I was allowed to try breastfeeding and then they would follow with a formula bottle. She was only 4lbs 13oz to start, and they didn't want her to loose too much weight.
It was hard to be so far from her in those early days, when I should have been laying with her on my chest (skin to skin) and feeding her when she wanted. But they have a strict schedule down there, so I went with it and would come a little early for feeds to spend time skin to skin before we tried breastfeeding. It was hard. We tried lots of positions, keeping her wrapped up or not wrapped, tickling her feet etc. We had some success, but not enough that they would let the bottles go. Her jaundice was bad, so they did light treatment and they also put her in an isolate. She was the only girl with 6 boys in the NICU and they weren't quiet guys either. They figured that she would be able to rest better in a quiet cube!
After almost a week there, we came home with formula, bottles and pumps. I knew that it was the best thing for her immune system and I wan't so badly to nurse her, so I stuck with it. We did formula added to breast milk to make it high calorie. I think that we started at 22 calorie and ended up around 26 calorie. She basically slept through life at that point, so for her to even try breastfeeding just plain wore her out, so I only tried about twice a week to keep her interested in it and hoped for the best. Though, everything I read and heard said that most babies with Down syndrome can't nurse well, but I committed to the difficult task of pumping until surgery, when I hoped she could start nursing. I had to have hope for that.
So every three hours I would feed her. It took almost 1/2 hour to get her to drink an ounce, then get her back to bed and pump. Feed myself, feed everyone else, maybe shower and get dressed or run an errand or go to a doctor appointment or pick kids up and start all over again, every three hours, all day, every day, for 4 months. It makes me tired just to think about it all again. But she needed it and I needed to do that for her.
It was so foreign to me...the bottle thing. Measuring every cc that she started with, measuring and adding formula (and MCT oil at the end), heat the bottle to just the right temperature, feed her, record what she ate, if she spit up and how much. I dreamt of the easy days, when I would just sit and feed my baby and just know that she was growing.
Surgery came and went and I still pumped at the hospital, though I had given up pumping at night. We weren't getting enough sleep to function during the day. A week after surgery they cleared her to start with an ounce of pedialite for a day, if that went well she could try breast milk. It went well and I was so eager to hold her and try nursing her. She sucked those bottles down so fast. I thought that feeding her would be easy, given the chance. But...her body was having troubles metabolizing the fats in milk, so no more breast milk, but some other stuff instead. I won't call it milk, since the first ingredient was corn syrup solids (40% of it), but that was protocall. We fought it, but that was the option. At least until her body recovered, which was about 3 weeks total.
We finally got her home and were doing every other bottle with portagen and breast milk and then just breast milk. I decided that it was time. We took a long weekend, when we were both home, to just work at it. I should have known then that she was going to be a funny girl!
She wouldn't latch on anymore and I was just desperate, so a lactation consultant at the hospital suggested a nipple shield and provided one for me to try. I had some success getting her to nurse with it. I would always try without for a few minutes first and then go with it and then when I switched sides, I would try without again. To be honest, she did ok with the shield and I was committed to using it as long as she nursed! But I wasn't going to give up, so I tried different things and finally got her to nurse from me if I held a bottle near her, let her put her hand on it and then she was fine! Imagine that, she just wanted to have the bottle near her to hold like a security blanket while she fed! A day of that and then I was able to just enjoy feeding my baby girl. She had her last bottle on my birthday:) It will probably be my best birthday every!
That was back in February. She did spill a lot in the beginning, but with some work, she got it and she nurses just as well as my other girls did.
Lactation consultants are super supportive and have many suggestions and supplies to help get you there. I had a super supportive husband, who helped in any way that he could (he was the fake bottle holder for a day:) Aubrey's nutritionist ( who has come since she was 1 month old) also encouraged me to keep pumping for her and to really keep at trying to breastfeed. Aubrey's speech therapist (coming since birth) was supportive in my quest as well. She did a lot of help getting her to latch on and feed correctly.
I feel lucky, that WE were able to accomplish this goal together and our bond has become so strong over these last few months. And did I mention that life is so much easier with "milk supply" always ready. No more supplies and equipment to carry everywhere, just mom and baby enjoying life.
Be encouraged that it can happen after 5 1/2 months of bottles. Do not be discouraged. Surround yourself with support. Babies with Down syndrome can and do nurse just as well as others. I know that that is not the case for all of them, but for us, it has been and it can be for you and your babies as well.