My childhood dreams were to be an archaeologist, singer, hairstylist, wife, and mommy. Truly, all of my dreams have come true. I mean…I thought I’d be digging for dinosaur fossils, but instead I search piles of laundry for that buried pair of nearly extinct socks!
When my oldest was born, I didn’t have a clue about babies! I’m sure my Mom prayed a bit longer for us in those early days. When we brought Cash home from the hospital, we swaddled his little semi-naked body tightly in blankets. (I kept our condo freezing because hello, crazy hormones of mine!) My mom mentioned something about dressing Cash, but I was honestly afraid I was going to break his arms if I tried to fit them into a onesie. I bent my own arm back mimicking the motion of dressing him just to be sure I wouldn’t be hurting him! One thing that I’m thankful did come naturally to me and my babies was nursing. My mom nursed all six of us kids. It must have made a big impression on me to watch my mom feed my little sister because I then began practicing with my baby doll (see picture above)! To be able to nourish my babies and meet that need the way God designed my body to work was a joy for me. I had a great nursing relationship with my older two and nursed through the beginning of my pregnancies with Chloe and Lincoln. I eagerly anticipated meeting Lincoln’s needs for nourishment and comfort in the same way.
When Lincoln was first hospitalized, nursing was an awkward dance of jumping into his crib, moving carefully around all of his cords and wires, while trying to discreetly cover up as a LIVE camera watched his seizure activity. I eventually gave up the battle for discreet modesty and focused on just feeding my sweet baby. There came a point where Lincoln was too medicated and sleepy to eat, and the nurses and I lost track of Lincoln’s feeds and his diapers began to get sparse. His seizures were still uncontrollable and every time we slammed his body with more heavy medications to stop them, he’d be knocked out for maybe 22 hours a day. Lincoln eventually had to get a NG tube through his nose and down his throat which just wrecked me to watch them place it. It looked so uncomfortable! Soon after, the doctors recommended a g tube and diet change. I think the doctors knew long before we did that Lincoln’s care was going to be complex and involved.
Everything seemed to be happening so fast…talks of the need for future therapies for developmental delays, threats of being moved to the PICU and being intubated, conversations of medical bills and applying for assistance, the next step of starting the ketogenic diet for seizure control, and surgery for a g tube. It was an overwhelming reality for a diagnosis we didn’t even have yet.
In all of this, it brought me comfort to nurse Lincoln. If I couldn’t do anything else, I could at least meet that one need and feed him. It brought a sense of normalcy to the chaos that was our hospital life. It was something special between he and I. Just the two of us. No one else could feed him. Just me.
Surgery and weaning his diet took place within days of each other. As we waited on the shipment for his ketogenic formula to come in, I cherished each nursing session. A few days in a row, I’d nurse for his “last meal” and find out that the shipment was delayed. I rejoiced in another day to feed my baby!
What’s funny is that in every hard thing we had to face, what broke me was having to quit nursing. The doctors would round with the residents every morning and I always put on a brave face. One particular morning, they all gathered around Lincoln’s bed, reviewed his chart, and asked how I was. I burst into tears and said how much I hated the diet. I’m sure they thought I was crazy! Of all the things to cry about!
But for me, I felt like Lincoln didn’t need me anymore.
So much of my identity was wrapped up in the one thing I felt I was good at and the biggest need of my baby…nursing. If he wasn’t awake to know his mama, and the nurses managed his medications, and anybody could feed him a bottle, then what made me special? He didn’t know me, right? And now he didn’t need me. There was nothing for me to do. Oh, how I grieved this loss. My husband spoke truth to me lovingly and reminded me over and over again that I was Lincoln’s mom and he did indeed know and need me. (He’s so sweet like that!) Perhaps all of the sorrow of Lincoln’s journey was just expressed in the loss of nursing. Maybe it wasn’t that heavy on its own. I really don’t know.
Up to this point, I had been pumping for my own relief when Lincoln slept too much to eat. Months later when we were preparing to discharge from the hospital, I was surprised at how much milk I had preserved and set it in my heart to donate it to a milk bank in the hopes of helping another fragile baby somewhere in a NICU.
My milk has long been taking up space in my freezer and it’s taken me a year to finally cross this off my to do list. Unfortunately, the milk bank (yes, they exist and they are awesome) has a time limit on donations and I had exceeded that by at least 6 months. Recently, I was connected with a milk donation page on Facebook. Two ladies showed interest and I’m certain I scared one off when I openly shared about why there were hospital labels on each bottle. Then, God led to me a sweet mom who lives in Charlotte (one of my hometowns) and is adopting a baby girl who just came 10 weeks early. I was floored by her response.
“I’m so grateful for your labor of love and being willing to pass on to other babies in need,” she said.
But I was the one who felt gratitude. God was granting the desire of my heart to help a fragile baby! And she thought my milk was worth driving over two hours to pick up the next day! And she wasn’t hesitant. She was overjoyed! My heart is overflowing just thinking about how God met each of our desires this week. God granted her desires quickly while I had to wait a year, but His timing was perfect in both cases. To God be the glory!
I can see now that giving up nursing for the keto diet was in one small way God’s provision for me. The fact that Lincoln can take a bottle easily from Daddy takes the pressure off of me to be the primary caretaker. Now Daddy and I can share the responsibility equally which gives me the freedom to recharge. And once again, experience and perspective have taught me new lessons. I’m certain I once judged bottle-moms and questioned why they would choose that. I know better now. I am so grateful that Lincoln can take a bottle right now. It’s very likely that one day, he will be strictly tube-fed. And then I’ll be so grateful for a g tube that allows him to get nourishment at all! And there’s no way to know really, but maybe the keto diet has contributed to better seizure control this year than last.
Once we were finally discharged from the hospital, I quickly found that there were plenty of needs to be met and God shaped me into Lincoln’s best nurse and advocate. What has been true all along is that God made me Lincoln’s mommy and I’ll fight for him, love him, and pray for him with all of the zeal I have within me. And that sweet boy has known me all along. He knows my voice. I know him. He grew right underneath my heart and that is a sweet bond that can not be broken. I hope one day when Jesus comes back and takes His kids to heaven, that after I’ve hugged Jesus tightly, Lincoln will run up to me, rest his strong hands on my shoulders and with a big grin say, “Mom!! I’d know you anywhere.”
(What I’ve come to learn is that nursing isn’t easy, possible, or desirable for some. What is also true is that some babies have major GI issues and will never be able to feed orally. Instead of breast is best, FED IS BEST!)