Oh friends, how we need your prayers. Many of you know that Wade was diagnosed with Eosinophilic Esophagitis when he was twelve months old. EE is a complicated allergic GI disease that typically involves a long list of food allergies. It's difficult to diagnose and to effectively treat. The road to diagnosis for Wade was a really long and difficult one. He was diagnosed as "failure to thrive," as he slipped farther down on the weight percentiles. He would not eat, despite the trauma that was feeding therapy. He saw several different doctors who had different approaches to this disease until we finally found the Children's Hospital of the King's Daughters in Norfolk, VA. There, Pediatric GI and Allergy work together and more importantly, we respected their approach to treating patients with EE. They were willing for us to try and work solely through food elimination vs. medication (there really is no medication indicated to treat EE, some are just used to control symptoms) and praise God, it worked! Wade's eosinophil count essentially went away based on food elimination alone. Granted, it was 18 foods, but we were so grateful.
Fast forward four years and we are fearing our precious Mary Graham may have EE. Here's why: At around four weeks (much sooner than Wade), she began to exhibit eczema on her cheeks. I removed dairy from my diet, which seemed to help, but the eczema has come back and been harder to keep at bay. The biggest sign that points to EE though is her dramatic drop in weight. At two weeks, she remained in the 50th percentile in which she was born, by eight weeks, she had dropped to the 10th percentile, and by 11 weeks, she was in the fifth. She is now considered failure to thrive, so the question remains as to why this is happening. In almost all cases, the problem is intake (of milk), so the first thought is typically the mother's milk supply. Our pediatrician raised this question at Mary Graham's eight week check up, but I felt sure that my milk supply was more than adequate. I have pumped 3-4 ounces, and I experience all the signs of a strong milk supply. What I have noticed more recently is that Mary Graham does not feed for a long time at each nursing session and often times it is not in a calm and satisfied manner. She just does not take all that is available to her. Our pediatrician was able to observe this at her most recent appointment. This suggests she is uncomfortable and for whatever reason is choosing not to eat sufficiently.
With our family history for EE, it seems to us there is likely no other explanation for Mary Graham's dramatic drop in weight. As you might imagine, my heart is breaking. As we have begun to put the pieces together, it has felt like I am living in a fog, really. Having just come through the challenging past six months of moving out here, renovating our house, and having a baby, I hardly feel I can handle another huge challenge. I feel very alone out here, on the opposite side of the country from the doctors we came to trust with Wade. There is no convenient children's hospital out here that would be an obvious first place for us to start. To think my baby is hurting and I'm unsure what to do for her is killing me.
My desire in posting this is for people to pray. Please pray with us and for us. Here is how:
- I am planning on contacting Wade's old GI doctor back in VA first thing tomorrow morning to discuss Mary Graham. We have not spoken in a couple years and she is a busy doctor. Pray with me that a message can reach her and she will be compelled to call me back.
- I want to get Mary Graham in for allergy testing ASAP. My earnest prayer is that her list of foods would be relatively short and manageable for me to remove from my diet. I want to breastfeed her with everything in me. I nursed Holland for two and a half years; breastfeeding is one thing I feel I do well and really enjoy as a mother, and the thought of having that taken from me is unbelievably hard for me to bear.
- While we wait to get allergy testing done, we are going to try and give MG elemental formula. Please pray that she would take it and for my heart as I bottle-feed her. As you might imagine, it's awful to try and nurse your baby fearing that it's hurting her to eat because of things that are in your milk.
- Lastly, please pray for our family as we wrestle with what feels like hard thing after hard thing for us out here in CA. If we truly believe that God is always good and He is in control, then none of this is by chance. It is all the willful doing of a perfect and gracious God whose ways are not our ways. I want to really believe that and to give thanks in all things, even those things that feel truly heartbreaking. Would you pray that we would cling to God's promises for us in this difficult time?
Thank you for reading and thank you for caring about our family!