Groundhog's Day

As of last night’s unwrapped weigh in, Harper came in at 7 lbs 3.7 oz! She continues to put on the weight and looks like she’s filling out. Her cheeks are getting nice and chubby, her coloring looks great and her body is starting to look proportionate to her head. There was a little while there that her head was looking a little large so I’m happy she’s losing the bobble head look. Harper continues to increase her feedings and last night took 100 cc’s at her 9pm feeding. She’s taking anywhere between 70 – 90 cc’s on a regular basis and we hope this continues to increase.

Harper has discovered the power of her lungs and vocal chords. Wow, and I mean, WOW! The child has learned how to scream at the top of her lungs. Harper has been a super mellow baby up until now, easily pacified by her, well, pacifier (hence the name, duh). As of this week, Harper is perfectly fine and content until hunger strikes her. I’ve never seen anyone go from utter happiness to rip roaring temper tantrum in a matter of seconds! When she is hungry, she’s hungry NOW and she wants that milk five seconds ago. I was talking to the nurses about this today and their laughing comment was, “she’s just like a real baby”. Now I don’t feel so bad for being the only one who thought this way. So I guess we’re taking one more step into normal parenting by having a child that cries bloody murder when she’s hungry. I should take this as a good sign but it still puts me on edge and running around like a chicken with her head cut off when I see those big tears, that red face and hear that scream.

As far as great news, we got the go-ahead yesterday to hold Harper on unwrapped days. Woo hoo! We have to be very careful with her omphalocele and I’m not breastfeeding when she’s unwrapped since I have to “football hold” her to feed. Since her O is tucked under my arm and not really in sight, I feel safer bottle feeding her when she’s unwrapped. But this means we can love on our little sugar any day of the week – not just every other day!

We had a few little high stress situations this week as well. Dr. Kenton was on vacation over the weekend so Dr. Shapiro, the fellow that’s been assisting with Harper since Day 1, took over her wrappings and treatment. As much as we’d like all of Harper’s medical team to work 7 days a week, we figure everyone needs a little break too and Dr. Shapiro takes Sundays off. Knowing this, we came in on Sunday morning expecting to assist the substitute doctor with Harper’s wrap job. This doctor had only seen Harper’s O wrapped once. As of today, I’ve now seen the wrapping process 20 times so was hoping to oversee and offer “suggestions” where needed. Unfortunately, when we arrived on Sunday, the doctor had already visited and had already wrapped Harper’s O. Jared and I walked in and immediately knew it didn’t look right. We asked the doctor to come see if it could be fixed but there wasn’t much done to fix what had already been done. I didn’t want to throw a big fit and thought, well, it’s only 24 hours. By Monday morning, the dressing was in complete disarray and when it was removed, it was discovered that the dressing had been rubbing the base of her O and had caused some bleeding.

Our other point of concern this week has been, again, the omphalocele. The base of Harper’s O is being wrapped with gauze which is then wrapped around her body for support. After the gauze, a band is placed at the bottom of the O to further secure the O. I’ve included a picture below from August 9 but her O is currently looking smaller than it is in the picture. There’s a portion of the base of her O that doesn’t seem to be growing skin very well and is remaining moist and wet. When her gauze were removed both yesterday and today, there was a smell coming from that area and its leaving a wet substance on the gauze. My immediate thought was infection, one of the worst things that could happen now. Dr. Kenton doesn’t believe that its infection but is pretty concerned with the area and keeping it dry. We’re currently discussing new ways to wrap her O so that the area remains open to the air and can dry out. Suggestions? Anyone? Anyone? Bueller? Bueller????



As I’ve mentioned before, our goal for Harper’s omphalocele is epithelization. We are making progress and her team continues to say that her O is looking smaller. We measured on Tuesday and the circumference of the O has gone down ½ cm. The main concerns moving forward are infection or that the surface of the O, which has taken on a dry leather texture, would crack. Both of these continue to be very real obstacles and my current “demons in the night”.

I made the comment yesterday that I felt like I was finally getting my arms around my emotions and settling into a normal routine. Well, I might be kidding myself about the emotions thing but I do feel like we’re a little more routine. Today was the first day I was allowed to drive since my C-Section so this, in and of itself, offers some much needed freedom. For the most part, we have the same routine over and over each day. Weekends tend to be a little different since Jared spends the majority of the day at the hospital with me but I can’t help but feel like I’m living in the movie Groundhog Day. The alarm goes off each day and I go through almost the same routine, the only difference being wrapped and unwrapped days, but now that won’t prove to be very different either. Oh, how nice it will be when we can finally bring Harper home and fall into a routine that Jared and I decide is best.

I’m currently reading a book called Jesus Calling which is just small daily devotionals to start each day. I feel like almost every day that I read this book, God is talking directly to me and the situation I’m currently facing. Today’s, once again, rang true saying, “Instead of desperately striving to maintain order and control in your little world, relax and remember that circumstances cannot touch My Peace.” Oh, how true for A-Type Brooke.

And I'll leave you with some pictures of Harper. The first are from her being burped and I just love the faces she makes! The last ones are from her 3 week birthday yesterday and I just thought they were sweet.