I am so thankful I serve a God who has had my precious son in the palm of His hand long before he was ever on this earth. I am so thankful that He is a merciful, HEALING, comforting God who forgives me even when I forget to trust Him in all things. I am so thankful for our family's health, despite all we are going through right now. Because I know, beyond a shadow of a doubt, that our Lord has a plan for Winston's life and He is going to use all of this to glorify His mighty name.
Let me start from the beginning. The very beginning. I'll try to condense but feel free to skim over some of these early details.
When I was in labor with our second child, my water broke in the hospital and they noticed there was meconium in the water, so they brought in the special care nursery team. A second bag of water broke, which was clear, so they decided Winston was fine and wouldn't need any extra monitoring. I am so thankful that he had not swallowed meconium and we were able to achieve most of our birth wishes for after delivery. Delivery went well and he nursed immediately. By day two, I noticed "lipstick nipple" and had some pretty intense pain, more than what would be normal for early breastfeeding days. I kept urging the staff that he had a tongue tie, but nothing could be seen as an issue. Five days later, my nipples were bleeding and the pain of his latch brought tears to my eyes. They clipped his tongue in the pediatrician's office, but it offered me no relief. By two weeks, he was still losing weight and we added a number of tools to our breastfeeding arsenal: a hospital grade pump, bottles, nipple shields, Dr. Jack Newman's All-Purpose Nipple Ointment, a feeding syringe, an ENT (and subsequent second tongue clip with the additional lip clip), the rock 'n play sleeper, a medicine cup, reflux meds (zantac and then rantidine) ... I'm sure I'm missing a few details, but you get the picture. It wasn't pretty. I'm so thankful I had friends and professionals who took my concerns seriously and offered us ways to make breastfeeding successful. Months later, Winston was gaining weight fine but my nipples still bled off & on so I had his tongue clipped a third time in case it might help with the pain [spoiler alert: it didn't]. I eliminated dairy, then reintroduced, then eliminated again, then started reintroducing, then did a full / strict elimination. I've carried around dirty diapers in ziplock bags, I've swabbed poop into fecal sample cups, I've cleaned blow-outs off my clothes, Winston's clothes, our couch, our carpet, his sheets, his changing table, his floor, the rocking chair, the carseat, the stroller, the pack n play, the rock n play, the jumperoo, the ergo, and just about everything else he's touched. I'm thankful for other friends who have had to eliminate dairy and offered suggestions, altered meals, and helped however they could.
Fast forward to this past Sunday, June 21. Winston is 11+ months old. He has had blood in his stool off and on as a result, we're told, of the dairy sensitivity. They've always warned me that black, coffee-ground stool is a big warning sign ... and wouldn't you know what I found while changing his diaper sunday afternoon?! So we ended up in the Emergency Room for 7 hours before being transported to a larger hospital with better children's capabilities, where we were admitted for a day. I'm thankful Winston had two more stools like that at the hospital, so there was no question of what was happening, and they were able to get clear and concise cultures done.
I'm not saying this to complain, but rather to shed light on what we've been through. Maybe so I can provide some advice or solidarity to another mom who might be going down a similar road. Maybe so I can make Winston feel guilty about all he's put us through in 15 years (kidding). Maybe it's just to provide myself a reminder of all we've overcome in case the weaning hormones get me feeling guilty about our breastfeeding journey coming to an end. Either way, we've been through a lot together, but I'm so incredibly thankful for our journey over the past almost-year. I have so much to be thankful for.
- Against all odds, we have never had to supplement with formula or donor milk. I'm so thankful for my commitment and conviction to nurse my children and for my God-given ability to produce enough milk for them even when Winston was not able to transfer it from the breast.
- There is a wealth of knowledge (through websites, support groups, and other moms) regarding dairy elimination and every other issue we've faced. I have plenty of places to turn if I have questions, need suggestions, or just need support and hugs and to know we'll get through it.
- There is a wealth of dairy-free alternatives to foods I like, and they're mostly affordable. Sure, I miss sour cream and alfredo sauce, but I've gotten accustomed to coconut milk ice cream and almond milk creamer and even goat's milk brie cheese.
- Winston's "scary" diapers happened Sunday, not Saturday (London's 3rd birthday / party). They happened when I was the one who was changing him, as someone else may not have known it was a red flag. They happened while we were at home, rather than on one of our many summer trips. They also happened during the summer, while Ben's dad is off work and able to stay with London so we could both stay in the hospital overnight with Winston.
- I spoke with a thorough, concerned after-hours nurse, who instructed me to go to the ER despite no other symptoms. We met thorough, concerned nurses and a doctor who didn't discount the severity of his symptoms, despite his overall healthy appearance. We were transferred and admitted to ensure that his symptoms were addressed and safely monitored. We were scheduled with a Pediatric GI specialist the day after being discharged from the hospital, had our appointment bumped up even earlier due to cancellations, and got scheduled for the scan he needs within two days.
- All of the possible diagnoses that have been discussed are NOT scary! They are fixable issues. Some are hard, some require immediate action, some may be long-term. But no one has used any scary words like "cancer" or "autoimmune" or even "chronic". Whatever is ailing my sweet boy, the medical staff that's caring for him is confident that they can get to the bottom of it and fix it.
- Finally, and most importantly - truly - is Winston's demeanor. He baffled every doctor who observed him with how happy and healthy he is. Despite all the blood in his stool, his blood levels are fine, he's not anemic, he needed no transfusions or IVs, his white blood count is not elevated and he has no fever. He smiled and flirted with everyone who came into his room, even minutes after being stuck 5x with needles. What we keep hearing is a possible diagnosis, followed by, "but he's too happy / healthy / gaining weight too well / developing normally for that issue". What an unbelievable blessing, am I right?
So here we are. After blood work, labs, stool samples, cultures, a chest & belly x-ray, and a lot of poking and prodding ... we still don't really know what's going on with Winston. We have a plan:
- Today, we began a liquid-only diet for the next 7 days (breast milk and introducing almond milk, with the hope to be at least mostly weaned from nursing within a week). I am so thankful he is tolerating half-and-half breast milk and almond milk already!
- On Thursday he'll have a scan for Meckel's Diverticulum. His GI and regular pediatrician don't think it's Meckel's, but they want to rule it out and I'm in agreement on that procedure. I do feel he has some symptoms consistent with that diagnosis but I am praying with faith that if he has Meckel's, there will be no question about it on the results of the scan, so we can treat it appropriately.
- After one week, we'll begin introducing one food at a time for a week at a time until we can determine what the problem foods are. We may never know, as his gut could mature or at least calm down enough in this break to be able to tolerate whatever foods were previously causing him issues. That would be ok with me, although hard to swallow, because it means we wouldn't have to restrict his diet after the elimination period is over.
Right now I'm praying for answers. I'm praying that God shows the doctor a clear answer for Winston's diagnosis, that there is no question about what the problem is, and that the solution is quick and complete. His current diagnosis is FPIES and something within me is not comfortable with that diagnosis, so I'm praying we find a diagnosis that leaves no room for doubt or question. I'm also praying that, through whatever else comes our way, Winston remains his happy self and I remain thankful.
Thank you to those who have been supportive on our journey so far. Through your prayers, texts & phone calls, and all who have offered to help in someway (especially my friend Jess who brought me a grocery bag of dairy-free goodies to the hospital - with two kids in tow, no less!), we have felt so loved and we have gotten through this mostly unscathed. We have an amazing village to help with London when we both need and want to be with Winston. It's terrifying to see your baby getting put into an ambulance or taken for x-rays, but much less so when you have the comfort of knowing your big girl is being well cared for. I'm also very appreciative of all the advice and experience that's been offered so far regarding Winston's struggles - please keep it coming! And please please join me in praying for our sweet baby, for his complete healing.