For the second post in this Motherhood series (see the first post here), I asked my cousin and one of my closest friends (we reconnected when Amelia was in CHOP’s NICU and Lincoln was in the hospital at the same time), Jen, to write about something that’s stood out for her in her experience with Motherhood so far. Jen also writes her own blog called Life, Love, and Lincoln, about her son Lincoln to keep friends and family up to date on everything that they are going through- Lincoln has a rare congenital heart defect called Ebstein’s Anomaly, among other medical issues, that they deal with on a daily basis but feeding has been a tough one for them (Lincoln has had a feeding tube for most of his life). She and her husband, Scott, are nothing short of amazing! Joe and I love getting together with them and Jen and I try to have play dates with the kids weekly. Anyway, here’s her story about her struggle to get Lincoln to eat.
Kids are challenging and I’m not afraid to admit parenting my medically complex baby isn’t easy! My son Lincoln was born with a congenital heart defect called Ebstein’s anomaly and he also has something called hyperinsulinism which causes him to have constant low blood sugars. He is 15 months old, 9 months post open heart surgery and about a month into eating by mouth!
This little person has challenged me and continues to challenge me in ways that I never thought would be possible. I am not the free spirited mom I predicted I’d be, in fact I’m rather uptight and I feel like it’s sort of how I need to be right now. I’m not sure I’ll be this way forever but in my life, in Lincoln’s life– I am his advocate and no person is paying as close attention to the details as me. My husband is the fun one, I’ve actually renamed him “cool dad” and that’s what I need him to be right now. I don’t complain about our situation because I know so many parents that have been in my shoes and their babies just didn’t make it. It’s not fair. Lincoln’s medically complex and his typical problems range from cardiac dissrhythmias to not wanting to eat. Although our challenges differ from a good amount of the population, I have found many children that are not medically complex have feeding difficulties, too. Because Lincoln had a bright yellow feeding tube, we were often approached anytime we would make a public appearance. Some sweet kids would come up to me and Lincoln to tell us they used to have a tube, or parents would share their stories about their kid and the tube, and then we have nosy people who simply ask loudly, “what’s wrong with him?” I honestly didn’t mind the attention he got from the tube, and I do find it interesting how many people have had kids with feeding intolerances. Lincoln’s feeding difficulties/hyperinsulinism have required him to have a feeding tube for a very long time, all 14 months of his life, so we recently upgraded to a g-tube (a small tube that is in his belly and not visible when wearing a shirt).
Lincoln works with a feeding specialist and an occupational therapist to help with his eating. We own every oral stimulation device, specialty nipple/bottle/sippy cup on the market and we attempt to feed him every.single.day. Lincoln cries, I cry– it’s made me frustrated beyond belief. To say I was persistent is a complete understatement. Lincoln had an 8 hour open heart surgery in June and the moment his sedation wore off, I had a spoon in his mouth with formula on it. Lincoln was never interested in eating despite all of our attempts until early last month. I heard him making a sucking noise and quickly grabbed some food and every feeding device we own. I started shoveling food in and he was loving it. For the first time he was enjoying eating. This was completely out of the blue and it made me cry tears of success! Mind you, he ate like a 4 month old spitting a good amount of it back out, but I could see we were turning a corner. I took this opportunity and sprinted. My husband and I made food available to him at all times. We praised him at each feeding session. He was really doing this. I called all of his doctors and went full-throttle feeding mode!
Lincoln loved the pre-packaged foods in the baby food section of the food store but I noticed they lacked calories and there was a ton of water in them. So I decided to celebrate his accomplishments by making Lincoln his food. I went to grocery store and bought organic fruits and veggies and completely went to town in the kitchen. I made pears, apples, carrots, sweet potatoes– enough for a whole month! Lincoln has been practicing eating for over a year and he is finally getting it down! He deserves the sweet reward of his mother’s home cooking! Don’t get me wrong, this kid LOVES anything prepackaged in those little jars that so conveniently say how much sugar, how many calories and carbohydrates it contains, but I feel so much better knowing what is in his food!
To anyone struggling with feeding challenges I hope you can find hope in this post! Feeding takes time– it’s a complete mess and there will be so many failed attempts even with every apparatus on the market today- this is not a walk in the park. Lincoln’s life has come with it’s obstacles- there is no way around it- but persistence, a good support system, positivity at meal time, and a kiddo that was ready to take the plunge into eating was what we needed!
Feeding was one of our biggest challenges with Lincoln and it brought me down many days– but if we can do it, anyone can! Embrace the mess and enjoy each and every small step toward success!
Jen, her husband Scott, and Lincoln… oh, and she’s due in May with baby #2!
Photo by Donna Billingsley (see here for the ones she took of me and Amelia!)
Happy Friday and April 1st! Thank you so much for reading! Don’t forget you can now subscribe to Lizzie & Jane’s email list (I’m not sending emails yet, but I will be sending one when a new post is up so you won’t miss a post and I’d like to send a monthly- weekly if you guys want it- newsletter with updates, sales, etc.) by clicking the subscribe link at the top of the page!
Also, if there are any topics you want to see in the Motherhood series, please leave a comment below or send me an email!
❤Britt
