One Picture, So Many Emotions

                         Sarah Rose Photography

This picture holds so much emotion; love, joy, relief, gratitude. And as much as I feel all of those things, and as difficult as it is to admit in the midst of my gratefulness; I am also heartbroken, hurt, and question myself even though my husband and I prayerfully made decisions together that I still believe were all the right decisions but I often have to re-play the story step by step to remind myself of this.

In preparing for Zelie’s birth we read several books, blogs, and articles by parents who have journeyed before us to learn all we could learn about Down Syndrome. It was incredibly helpful to have a knowledge base before going to any doctor appointments. We wanted to be familiar with things that might come up, have a general idea of vocabulary as well as planned questions (I can never come up with the right questions in the moment… or am too scared to ask them before I've had the opportunity to think on it). Babies with Down syndrome commonly struggle with nursing (not all, but many), further, there are many that struggle with eating in general and need the assistance of a G or NG tube to make sure they are getting the necessary nutrition - thank goodness these medical advances are available! I often prayed throughout pregnancy that she would be able to eat on her own; either through nursing or a bottle. Having nursed my other 3, I was hoping she would nurse but told myself I would just be grateful for her to be able to eat any way she needed. When she was born, she struggled a bit at first but with the help of a lactation consultant, she latched! We were really excited. However, over the next 24 hours, her ability to latch and nurse seemed to completely disappear. I asked for a pump and we spoon fed her colostrum. We tried at every feeding but often felt that after two attempts she would look at me like I was crazy. From then on I was pumping after every attempt and before we left the hospital, we were giving her pumped milk in a tiny bottle - she took it beautifully! I was thrilled there was no risk to our going home and was still hopeful we would be able to nurse.

Then jaundice. Sleepiness is another common trait for newborns with down syndrome (beyond normal newborn sleepiness); that, coupled with the jaundice just knocked her out. If she wasn’t being woken up to eat, she was sleeping. We woke her around the clock and there was absolutely nothing we could do to get her to even attempt to latch - that sweet reflex where a baby turns their head to open wide when their cheek is tickled, just wasn’t there at that time.

So I did one of my least favorite things; I pumped… a lot; I was anxious about keeping my supply up, I was constantly watching the clock and planning my day around the pump. I was following some amazing moms on instagram who had mastered this skill and tried to learn from them. I have always been in awe of mamas who pumped and bottle fed - not only is it a ton of work but very time consuming and at least for me, emotionally draining.  I felt isolated. And so tired with the extra time it took to pump and feed a sleepy baby in the middle of the night. 

I scheduled an appointment with a lactation consultant to see if there was something we could do to improve the situation. As we got in the car, I said a prayer and asked God to guide us in how to move forward because our current schedule was not sustainable, especially with 3 other kids that needed me. We got to the appointment and the first thing we did was weigh her. I had been to the office just 3 or so days earlier for a regular appointment and the goal was to have her gain an ounce a day. When those numbers settled on the scale, I blinked hard to make sure I was seeing it right and then the nurse said it out loud; not only was she not gaining, she was still losing. I lost it. My head fell into my hands as I sobbed. I sobbed out of devastation, fear, feeling like a failure, and sheer exhaustion. Even with doing everything we could, the breast milk wasn’t enough. I didn’t even move forward with the lactation aspect of the appointment, instead we made a game plan to make sure she was gaining weight.

We had ordered some formula in case we needed it and it was supposed to arrive that day. As much as I had asked God for direction, I still felt blind-sided that this was how we would get it. There was no doubt in my mind that she would have gained weight.. she was really good at the bottle. But here we were… Thankfully I had found a formula I really liked and our pediatrician was supportive so we decided to begin a slow transition. I periodically still attempted to nurse but also relaxed on the rigid pumping schedule and got more sleep.

We had regular weight check appointments over the next couple of weeks and sure enough, she was doing amazing! I am grateful that she is such a great bottle-eater and I am grateful that I am more present to both her and my other children.

So why do I still tear up when I talk about the fact that I am not nursing? Why do I still feel the need to defend this choice? It has nothing to do with societal pressures to breastfeed or feeling judged by other people; I miss the assurance that I would never be away from my baby during these first few months. I miss that I had guaranteed time every 2 hours where I would get 1:1 snuggles with my new babe. Sure, at times that would be challenging as there were things to get done but I was forced to slow down. I have had to grieve this change of plans and still am, in part because it’s been challenging to accept that I need to grieve. I appreciate those who have listened to me tell this story in person or via text when they simply asked how we are doing and probably didn’t expect an emotional download of those first few weeks.

I am grateful that my husband, oldest daughter and parents have had the opportunity to feed her (it is awesome to take care of her in that way!) but in an admittedly selfish way, I miss being the only one that can provide for her. Thankfully, there is a time slot that no one else wants, even I might grumble about it from time to time but deep down, I wouldn’t give it up; it’s those dark, quiet hours. While the middle of the night feeds can be challenging, I am thankful that she is now the one waking me up to eat and I am happy that she knows if its night, its mom.

I am grateful for this picture. I am grateful for the eye contact and love it captures. It may be different than what I had previously known but it was what she needed. It is an opportunity to focus not on my wants but her needs and when I remember that, it is easier to let go and let God.