So with Sloane, it was a no-brainer. We would breast feed again for as long as I possibly could. Just like with Will, I bought a 3 back of baby bottles in the event something happened to me and my milk supply and Derek needed to feed her (hey, I'm a planner, gotta plan for the worst). But I had no intention of using them for at least 2.5 months...
When she was born and they told us she had Downs, I had no idea what that would involve in an infant. I'm mean, she's a newborn; all the pain of raising a special needs child would come later right? She had a good heart, her digestive track seemed OK, her weight was nothing to be alarmed about, she was a little on the short side but she does have Downs-she's going to be short right? What does low muscle tone mean for a newborn? We were about to find out.
Having Sloane in our hospital room those first few days was a must. The hospital made great strides in the last 4 years to make sure that happens. The nurses no longer whisk your baby away to check their vitals and weight along with giving them a bath. They do everything in your room now. I was pleasantly surprised. We really felt like we were apart of everything going on in her life. Whenever a nurse came into the room (whether it be my nurse or Sloane's nurse) Derek and I were either trying to wake her up to feed or trying to wake her up in the middle of a feeding... she slept ALL the time. Any parent would say "Yeah" to that except that Sloane really needed to eat. My milk supply was depending on these first few days with her. We were really getting worried with the amount of time she spent sleeping. Is it because she was born a week early; is this what premature babies do? What we found out is that low muscle tone in an infant with Ds means the muscles in her face too. Poor Sloane would try to breast feed and within the first 5 minutes, she would tire out and fall asleep, a deep sleep. There was no waking her. I felt so helpless at that point. My mothering skills were failing me, she would not eat. The nurses could tell I was struggling and in a state of desperation so we called a lactation consultant. My first (yes, there was more than one) lactation nurse was about 7 months pregnant with a child of her own. She was so nice and comforting to talk to. She even confided that her child might have Ds but they're not 100% sure. She knew Sloane had Downs and explained to me the importance of getting her to eat whenever she woke up. Little did she know that Sloane would sleep for 4 hours at a time; completely knocked out asleep! It was so difficult to wake her... I asked her how many children with Downs she has consulted with and she said none... NONE! What do you mean none? She said most babies with Ds are whisked away to the NICU and the nurses never see them. I sat back in my bed and was in awe of my little girl... she beat the odds. She didn't go to the NICU; she was with us in our room. I was so determined right then and there to get her to eat, to keep her in our room. I didn't want to lose her to the NICU... So we tried and tried but she just wouldn't stay awake long enough.
Time for our second lactation consultant... Elisabeth. She brings with her a hospital grade pump and a big bag of supplies. I'm thinking to myself "No way am I pumping!" But we're desperate, I'm desperate. She needs to eat. Each time Sloane's nurse brings the infant scale in my heart sinks. How much weight has she lost this time? Is she OK? For a little while, yes she's OK but she needs to eat.
The lactation nurse shows me how to pump my colostrum, what little colostrum I'm producing, into a vial. Then she chooses the smallest syringe out of a stack of 12 to extract the 1ml of colostrum to force feed Sloane. 1ml seems like so little yet when I'm feeding it to her, it takes all her energy to swallow it down... What am I going to do if I have to feed her 1ml at a time? We pretty much repeat this routine all day... With every drop that runs down her cheeks my blood pressure rises. "This is liquid GOLD Sloane... you're wasting it! You need to eat!" What are we going to do? Sloane's nurses, sensitive to new parents of a child with Ds, come in and inspect her feeding chart every hour on the hour. "How much has she eaten?" "When was the last time she had a wet diaper?" All viable questions but you feel like you've been put on the chopping block eat time. "Are you performing as a parent" is what they're really mean to say... Go on, check her heart beat, see if she's still alive as she lies there sleeping... I can't remember a time when a nurse didn't come into the room and I didn't start crying immediately after they left. I'm failing as a mom. Derek was being so supportive but I'm failing...
Well, in walks Daisy (I think that was her name-it's the exact opposite of who she really is so that's all I can remember in a name). She's a fill-in nurse. I don't even think this is her floor or her expertise. She walks right in and starts checking out our sleeping baby, never mind knowing how old she is or what's going on in our room when we're alone. "When did she eat last?" I reply about two hours or so ago (it's on the chart lady, just read the Damn thing!). "How much did she eat?" About 3ml I reply. "Uh, she needs at least 30cc every 2 hours!" (that's 30ml people...). I tell her that's impossible, I can't make that every 2 hours! She's only 2 days old, my milk supply hasn't even come in yet for crying out loud! "Well, we need to get a lactation consultant in here" she spouts off. Yeah, you do that lady! I reply "Elisabeth was just in here 2 hours ago, why don't you call her back in." She looks at me with a surprised eye, either surprised I know the lactation consultants name or that one has even seen me. I don't know but I want Daisy out of my room this instant.
She finally leaves and the tears come pouring out. I'm sobbing and Derek is just beside himself. I know he's thinking how could this nurse come in here and bring my wife to the point of feeling like a complete failure. This is our second child, not our first; we know what we're doing here... But I feel like I'm starving this poor innocent child. I just can't sit here and let that happen. I know the next step but I just can't get myself to do it. I would be giving in and then truly failing at the one thing I'm supposed to do. Elisabeth returns and she reassures me we're doing everything we can to help Sloane thrive. I'm OK, I'm doing a good job, I'm a good mom. We discuss our options though and I tell her I'm willing to bottle feed but I just want to give this another try. She consoles me and tells me it's my decision. She's so supportive, she makes me feel like I'm doing the best I can. We need more Elisabeth's in this world!
Well, guess who comes in for another check... Ms. Daisy. THIS time her attitude is drastically different; 180 degrees different. "How are we doing?" in a super pleasant tone. We reply and she says "Well, if we need to supplement..." and right then Derek jumps on those words "What do you mean supplement, we're not supplementing with formula!" he says not so nicely. She replies "...with the syringe feeding..." That's better... He'd had it with her abusing his wife, but at least she explained herself. We're not bottle feeding lady, Elisabeth said we're doing OK. Daisy reiterates "Just keep trying and if you need anything, let us know". Sounds like someone got her you-know-what chewed out by Elisabeth for her attitude towards a couple who have been through more in two days than she has her entire life. I imagine Elisabeth informed Daisy of Sloane's condition and Daisy didn't bother to read the chart and find out for herself. I imagine Elisabeth told Daisy no woman produces that much milk the second day after having a baby... I imagine Elisabeth instructed Daisy to BE NICE!
We left the hospital with Sloane dropping 9% of her body weight. She was doing better at eating but it was still such a struggle. My Doctor offered us to stay another day if we needed it. We were allowed to go home after three nights/four days but could stay a 4th night if we needed to. I think he was offering because we had been through so much. If we were afraid to go home with Sloane without the help of the hospital and nurses (no, not Daisy), we could stay another night. My thought was, and Derek agreed, we stay another night and Sloane drops to 10%... then she's not allowed to leave! No way are we falling into that trap... We want to get home to our lives, to our son Will and our home.
I was prepared to admit when we needed to supplement with formula and by the first week we finally gave in. It's hard not to feel as a mother you can't provide for your child. The time in the hospital was difficult. My milk supply finally came in but it wasn't the same as with our son. Her eating habits aren't as strong as Will's. You need that constant stimulus in order to have a strong milk supply and it just didn't happen. After the first week, I went back for another lactation consult. I was pumping to try to get my supply up. By the second week I met with the lactation nurse again. I would pump three separate times in order to have enough milk for one of Sloane's feedings. One ounce per pump session is not my idea of a productive 20 minutes... But I kept trying; I just wasn't producing enough. I tried supplemental vitamins, eating almonds, breast massages, relaxation time, anything to get my milk supply up. Each day it seemed like we were feeding her more and more formula; she was gaining weight and growing and needing more food. She rarely breastfed at all. I would pump and we'd take turns feeding her from a bottle. We were happy with her growth but I was a little sad that I wasn't the one solely helping that along. Enough was enough though, no more crying and being selfish. It was about Sloane not mommy. By the time she reached one month of age I decided that my time was better spent and I stopped breastfeeding and pumping all together. A few nights I would breastfeed, just to relish in the thought I was providing for her but it put her to sleep more than anything... She still needed me, with or without breast milk. I needed to close that chapter in our lives. And poof, gone were my opinions that every woman could breast feed. I may have given up breastfeeding but that doesn't mean I gave up on providing for our daughter. What I did provide in that small amount of time was useful and helped her grow. I did what I could.
I would give her a bottle in public and wonder what other women were thinking about me though. Am I the mother that doesn't care enough to pull out my breast and feed my child? Well, I never did that Will but that's beside the point. Are they looking at me in disgust or disappointment because I'm feeding my child formula? What will I say if they ask me if I breast feed? I had my response all ready... a lie that is. I'm not going to tell people my child has Downs and couldn't breastfeed well so my milk supply went down the drain... It's not her fault. Nothing is her fault. Luckily, no one ever asked... Either they just don't care or they don't dare ask. Like it's any of their business anyway. But I do worry about being judged as a mother. I worry they'll judge our daughter. What? No breast milk? That's why she has developmental delays... Way to go MOM!
I will have to say formula feeding does have it's advantages. Besides the downsides of costing a fortune and always having to remember to bring it with you... you can feed your child anywhere. I don't need to find a place to hide and breastfeed my child. Eating dinner? Make a bottle of formula and join in at the table Sloane! Visiting my friends at the office? Make a bottle and walk around the office with her! At Will's gymnastics class? No problem being surrounded by 100 strangers. I got this covered! The good news is she transitioned smoothly between breast milk and formula. It's like she knew mommy was having a difficult time with it and she said "It's OK Mommy. See, I can eat both. I'm not picky!" She makes everything seem better. For how much we as parents have struggled with the realization that she's forever going to live with this disability, she sure does make it look easy!
