Evan is full of life! He rolls everywhere, climbs up whatever he can–whether that be one of his parents or the side of his crib, and babble, babble, babbles! Once he is crawling or walking, there will be no rest for his mom and dad! Ryan and I put Evan in his crib yesterday while we rearranged his nursery. When we took a brief break, we looked over at our adorable son and watched in amazement as he went from laying down, to sitting, to pulling himself up to a standing position using the crib railing! He looked both proud of himself but also confused as to where he was and exactly how he got there. Needless to say, his mom and dad were soooo excited!
Over the past six months, medical professionals have expressed concern about Evan’s slow growth and have recommended various courses of action, such as medical tests, additional evaluations, and many, many appointments. Despite all of this, Evan has struggled to grow. It has been a stressful time as you can’t force a child to eat when they don’t want to eat!
With various professionals come various theories, many contradicting each other. Each has their own theory and prescribed solution. One felt Evan still suffered from acid reflux even though it had been eliminated by a gastro-intestinal specialist, another felt that if we just altered Evan’s feeding schedule by a half hour, it would all work out. Some have recommended a conservative approach—tests, monitoring his calories, wait and see, and others have gone to the other extreme and stated that Evan should have a feeding tube inserted by now as the lack of caloric intake could permanently hurt Evan’s brain development! In the midst of all this uncertainty and contradictory opinions, what is a parent to do?
We shared our concerns and frustration with our pediatrician who stated that she although she disagreed with the feeding tube recommendation, she agreed that something more than blood tests and feeding evaluations needed to be done. She recommended that Evan have an “esophagogastroduodenoscopy.” Okay, she didn’t actually use that term with us, she said he would get “scoped,” but the official terminology was used on the paperwork and it was so cool how long the word was so I just had to add it here! Basically it’s a fancy term for having a scope go down his esophagus, into his stomach, and upper intestines, to once and for all, rule out any medical issues that are preventing Evan from growing. The scope was dual purpose: it would take photos and it would obtain some biopsies. She then shared her second recommendation, that Evan be hospitalized at Children’s Hospital for several days to work with the experts in the field to figure out where we go from here. She estimated that he would be inpatient for 3-4 days.
Evan had his scope done last Thursday at Children’s Hospital, Denver. It went well, we even got to see the photos that were taken of his stomach! The biopsies came back normal. After the scope, Evan was admitted into the hospital. A few days before Evan’s hospitalization, we learned that this particular hospital was one of the TOP TEN in the nation for treating kids! Additionally, we later learned that one of the nutrition doctors was renowned for working with kids who are struggling to grow. She’s one of the best in the nation, if not the world, for our specific issue! In spite of our fear and confusion, we felt so blessed that such a great resource was only a half an hour from our home!
The experts at Children’s determined that Evan is “mildly underweight.” That’s compared to being moderately or severely underweight so it was really good news. They explained that it’s important for him to gain extra weight at this stage not because his brain is currently at-risk, as it’s not, but because there is only a small window of time where he can gain his “catch up” weight and it not hurt his overall health. Another thing that made us thankful for the Children’s experts was their stance: keep things positive, have fun with Evan, and don’t count calories! Past professionals had encouraged the calorie counting. The Children’s experts explained that counting calories stresses parents out, which consequently stresses the child out. Ryan and I were so glad to hear that our calorie counting days were over! We left the hospital with a solid plan and a referral to an outpatient clinic at Children’s run by the same professionals. The clinic focuses on the growth-challenged.
While at Children’s Hospital, Evan stayed on the Pulmonary wing. If we left Evan’s room, we passed neighboring rooms that housed very sick children. I passed one father sitting with a medical professional as he was told about his child’s diagnosis and experimental treatment, some treatment that had originally been used to treat cystic fibrosis. Ryan or I could have just as easily been sitting in a chair like that, hearing a much more serious diagnosis, but we weren’t. We have so much to be thankful for. Evan may have some health issues, but in comparison to many other children out there, he is a healthy, active little boy who does not require many days, weeks, or months in the hospital. God has so blessed us and our little boy.
In mid-January (sorry we posted this out of order!) we were blessed with a mini-vacation to Santa Fe while Evan hung out with his Grandpa and Grandma Jacobson. We slept a lot, ate fun foods, took lots of photos, watched movies, and explored the beautiful, historic city. Even the drive to and from Santa Fe (about six hours from Denver) was relaxing! Here are a few of the pictures we took!
Evan will turn one in a little over a week! Wow, this year went fast. At a little over 13 pounds, he’s still struggling to put on weight, but what he lacks in size, he makes up in feistyness! His usual hairstyle is a mohawk as he has little hair on the sides, but plenty on top and that hair stands up on end, with no help from his parents! We temporarily got it to lay down nicely for these photos, but it never lasts!
Evan loves rolling all over the place and will be crawling any day now. He loves to jabber and although I try and try to get him to say “mama,” his favorite word is still “dada.” Maybe he’ll say “mama” when he’s a toddler because as of right now, it’s not happening! He’ll just look me straight in the eye and say “dada!” And when you hold him, he loves climbing all over you. There’s no sitting still for this little boy!