And off we go...

Today marks the beginning of our first weekend home and we can't wait to spend a full weekend out of the hospital as a family! We're really starting to settle into a routine and Harper is a pretty easy baby to have around. We were told that she might have trouble adjusting to the quiet house after the constant beeps, buzzes and noises of the NICU but she seems content in any surrounding, whether it be full of noise or completely quiet.

Harper has enjoyed all of the fun things that homes offers – her room, baby gear, toys and all of the gifts she’s received. She especially loves the Prayer Quilt that was so lovingly made for her by the Two or More Reunion Group – each knot represents a prayer said for Harper and what a great physical reminder of the power of prayer. She’s also had so much fun having visitors that have been waiting to hang out with her. Uncle Brentie high tailed it back to visit at the beginning of the week and I can already tell how much those two are going to love each other! Harper also likes being outside and the weather has been awesome. We’re finally putting that stroller to good use around the neighborhood.
Harper on her prayer quilt

Since Harper has her omphalocele, her body is constantly acting like its repairing a wound so she is burning more calories than other babies her age. For this reason, she has trouble putting on weight on breast milk alone. I can breastfeed her twice a day but otherwise, I’m pumping and adding formula to breastmilk so we can manage her weight gain by adding extra calories and know exactly how much she’s taking. It seems like there’s always something to do involving her meals whether its pump, feed her, wash bottles, wash pump parts, fortify milk and once I’m done, the process starts all over again every three hours. We were given the okay by the pediatrician to feed her every four hours at night so I’m grateful for that extra hour of sleep!


Speaking of sleep, our girl is an excellent sleeper. What a gift! We try to get her down for the night between 8pm - 9pm. After this point, I wake her to eat at 10:30pm, 2am and 6am. She sleeps right up to the point when I get her up, finishes as much of a bottle as she can before falling right back to sleep. Have you ever tried to burp a sleeping baby? Its not easy! As of now, we have her in a bassinet in our room but once we feel comfortable, we’ll move her to her own room like a big girl.
Harper napping in her room

I’ve turned into a Harper’s mini-nurse for the time being. We are caring for her omphalocele here at home. I’m cleaning it with cholra-prep every day and then applying the betadine treatment every other day. She’s still on her antibiotics and meds so she has something added to almost every feeding. Additionally, we still can’t get her O wet so for now, she’s a sponge bath girl. And let me tell you, this is a two person job! She HATES sponge baths so Jared plays the role of soother, therapist and dryer while I’m the operational point person working on soaping, cleaning and diaper changing during the bath. Unfortunately, the girl’s gotta be clean so, on we march.

Harper had her first official pediatric appointment on Tuesday and is up to 8 lbs 12 oz. She’s in the 11th percentile for weight but we’re not going to pay attention to numbers as long as she’s climbing the chart as she’s suppose to. Other than the O, she’s looking great.

We also met with the pediatric surgeon in San Antonio on Wednesday. As of now, he wants to schedule to repair her O in stages and has scheduled her first surgery for October 29. His plan is to compress the contents of her omphalocele back into her abdomen and attach a piece of mesh to either side of her abdominal muscles to bring them together over the liver. He would then take all of her existing skin and try to close it over the mesh. If there isn’t enough skin, we would have another open wound to care for.

Jared and I want to be sure we’ve checked out all of our options and are 100% sure with the course taken for Harper so we’re going to meet with Dr. Cass, a surgeon at Texas Children’s Hospital in Houston, in week and a half. We’ve been referred to this surgeon by a few different people and in doing research, he’s a surgical badass (please excuse the choice of words but really, he is!). He’s worked with a number of omphaloceles before so knows his stuff. We’re hopeful that they will be in agreement with the surgeons here in San Antonio. Having the surgery take place at home would make our lives much easier but we’re going to do what would be best for Harper and trust that God will make that decision clear. More to come as we finalize plans.

Thank you to those that have brought meals this week – it has made our lives so manageable as we adjust to this new routine at home. And thank you as well for all of the continued prayers and support. Our journey continues and we appreciate you traveling in with us!
I call this the "Magic Chair" - she loves it!