She weighs about 8 1/2 lbs and wears newborn clothes and diapers. She still eats about 2 oz of formula every 3-4 hours through her g tube. A couple of weeks ago she had her third and final esophageal dilation! Her surgeon gave us a thumbs up to start bottle feeding, but of course, we still have to meet with a speech therapist. (There aren’t a lot of speech therapists/pathologist in our area so we are waiting our turn in line.) As far as her cognitive and physical development, when laying on her tummy she can turn her head from side to side and she smiled for the first time a couple of days ago 🙂 She is also noticing her hands and will bring them to her midline. She has been opening her hands a lot more too! When she is sitting on your lap she can bring her head to her midline for a couple of seconds. My favorite thing is watching her watch and follow me whenever I walk by or around her.
This past month has been pretty rough in the Johnston household. For the past 4 weeks, Harper has been crying a lot. You can tell in the pictures above that she does not look happy, because well, she isn’t. She cries about three-four times a day/night and it usually lasts for about 45 minutes-4 hours. There is only a handful of times when she is awake and in a decent mood. We have tried everything to help her; change her diaper, take her clothes off, swaddle her, rock her, put her in her bed, feed her, stop feeding her, “burp” her, try a pacifier, give her a bath, play music, sing, take her outside, drive her around, give her some Tylenol and/or gas drops, lay her on her tummy/side/back, give her a baby massage, we even saw a chiropractor, nothing works. One night she started crying at 8:00 and she was still crying at midnight so we took her to the ER to make sure there wasn’t something we were missing because of her diagnosis. All tests, ultrasounds, and x-rays came back normal so they sent us home.
Some doctors suggested she could be a colicky baby. But how do you determine that when she isn’t a “healthy”, “normal”, baby? Could she be teething? Most likely not because Trisomy 18 babies have a slow growth rate and that includes their teeth.
During this time of Harper crying, we contacted one of her doctors that see Trisomy 18 babies. She told us that she has seen a lot of Trisomy 18 babies that experience neurological pain but there is no rhyme or reason why. She suggested giving Harper a medication to help calm her down and relieve any stress that Harper may be having. We put this medication off for a while until we had tried everything possible because we didn’t like the idea of giving her more medicine than what she is already on. But, a few days ago we finally broke down and gave her the medicine. The medicine takes a couple of weeks to get in her system to make a difference.
This has been an extremely stressful and exhausting month for our family. It breaks our heart to see our daughter cry and there is nothing we can do. We also second guess ourselves on whether or not we are doing the right thing by giving her a medication that may or may not work. But, we do hope this medication will ease any pain or stress she might be having. I will update the blog on Harper’s next monthly update.
Good news is, Harper is still the cutest baby in the entire world 🙂