One Big Happy Family

We're currently working on getting the whole family under one roof...unfortunately, that roof is Methodist Hospital’s roof and not home. To add to the chaos that is already our life, my step-dad Steve, was admitted to Methodist on Sunday afternoon. He came down with shingles the week before Harper arrived and has been struggling with feeling bad since then. Last Thursday, he took a major downturn and increasingly got worse as the weekend progressed. On Sunday, I went to their house to find him half delirious in pain and sickness and had to do a little convincing to get him to go to the hospital – I must say, doctors make the worst patients! He's now been diagnosed with prostatitis,abscessed diverticulitis and has a hole in his colon that will need repair with surgery. I keep waiting for Ashton Kutcher to show up telling our family that “we’ve been punk’d!” Oh, if only that was the case. Brent and Lynn both came in town yesterday so it was nice to have some moral and sibling support. Steve’s expected to be in the hospital a few more days while his system repairs itself and we’ll discuss the options for surgery to repair his colon when the time is right. I have the feeling his body has taken quite a beating from the chemo over the last year and a half and is his immune system has decided to take a little vacation. Well immune system, hope you’re having fun in Hawaii! Needless to say, the last few days have left us all feeling a little frazzled. My friend, Lisa, whose family has recently had their fair share of time in Methodist, began referring to the hospital as “jail”. I now fully understand this description since all I want to do is break my family out of there! I know God wouldn’t give us more than we can handle but our plate feels FULL right now.

The positive that came out of the last couple of days was that my brother, Brent, was able to meet his niece for the first time! Brent came in town for my delivery and wasn’t too thrilled to hear that the NICU only allowed parents and grandparents in. He borrowed (and when I say borrowed, I might also mean stole) a pair of hospital scrubs in an attempt to sneak in to see Harper. The Methodist NICU should be very proud of the gatekeeper at the reception desk because Brent was stopped a total of three times during my stay in the hospital after her delivery and given a very stern talking to. They even threatened to take away ALL of our passes if he tried one more time so he decided to play by the rules and wait until Harper was released. However, due to the turn of events over the weekend, I think the nursing staff started to feel sorry for us. I ever-so-politely asked if there was any way they could bend the rules while Brent was in town since Harper was now an extended stay patient, I was given a five minute pass for Uncle Brentie to sneak in for some Harper lovin’. It made me so happy to see my big brother with my little girl in his arms. He soaked up every minute they were together and I can’t wait for them to get to spend some real bonding time together. You didn’t hear it from me, but he might have gone a little over the five minute time pass. It was pretty hard to tear him away from that sweet little nugget!







Jared and I are going through our own little mini-excursion on the Emotional Expressway. We were spending some QT with our girl, H, yesterday when the nurse practitioner for our pediatric surgeon showed up. We were greeted by, “so, are you all getting all ready to take Miss Harper home?”. Um, ex-squeeze me? What was that you said? Home? As in, HOME? As in, our home? I’m sorry, I don’t think I heard you right. Oh, yes, that’s right, she was talking about our home…and our daughter…and us taking her there. According to Barb the NP, Dr. Roberston feels like Harper isn’t doing anything in the hospital that we can’t be doing at home. Well, as you can imagine, that pretty much caught us off guard and in about 15 minutes, we went through the full gamut of emotions ranging from excitement to fear to worry to glee to where in the heck is this coming from???? We tried not to get excited or to get our hopes up in anticipation that this could just be a random suggestion being thrown out there. Ready for a U-turn on the Expressway? This morning, Dr. Kidd, one of the other pediatric surgeons on the team, mentioned that the skin around Harper’s O could be constricting, not allowing the contents of the omphalocele to go back in her body. His suggestion is to possibly remove the hard, scabby cover from the O and place a mesh over the contents to force them into her body - a procedure that would keep her in the hospital a lot longer and also open up a high possibility of infection. Ready for yet another U-turn? I, then, had a talk with our neonatologist, Dr. Kenton, this morning after Dr. Kidd showed up. Dr. Kenton is very pleased with Harper’s progress and doesn’t think we should mess with what is working. He’s been happy with her progress in the NICU and his observation is that the O seems to be shrinking in size. So as you can see, it doesn’t sound like anyone is on the same page about our immediate future. Jared and I have always said that, while we would love for Harper to be home and will be thrilled on the day we get that green light, we would also prefer to err on the side of caution. Should that mean another 6 months in the hospital if it’s the best thing for our baby, we are on board. Now, granted, we don’t think it will be 6 months but we don’t necessarily feel she’s ready to come home tomorrow. What we’ve discussed with Dr. Kenton and we hope to move forward with is to keep Harper as she is now for another two weeks. At that point, let’s take a look at Harper’s condition, see what kind of progress she’s made and then be in a position to re-evaluate. I’m feeling we might have a team meeting in our near future to ensure everyone involved is on the same page. I’d personally like to exit off of the Emotional Expressway and I think this might be the closest approaching exit.

As for Harper, she’s weighing in at a whopping 7 lbs 8.4 oz. She is continuing with her healthy appetite and is growing before our very eyes. We’ve also changed the treatment of her O in the last week. There was a spot on the underside of her omphalocele that wasn’t drying out completely on unwrapped days. The problem with a wet spot is that it can harbor infection. When treating with betadyne, the goal is that her ompalocele dries out and skin grows underneath the “scabby” part. After trying a few new wraps for her O, the team discovered that her O is actually pretty stable on its own due to the skin growth that’s already taken place. We’re still painting on the betadyne but we are now leaving the O unwrapped and actually free standing all of the time. Her O is also stable enough that we can hold her all of the time. Oh, how nice to be able to walk in and pick that little girl up any time we want to! (Well, except for the hours of 6am – 8am and 6pm – 8pm when we can’t be in the NICU. Always an exception to normal!) As you can see from the pictures below, the skin growth is the pink shiny skin at the base of the omphalocele. The top part almost has the texture of dry leather and the scabby parts around the base are starting to flake off.





I’ve really debated whether or not to post pictures of Harper’s omphalocele. I am personally fascinated by the details but I realize it might not be something everyone wants to see. I came to the conclusion that these need to be posted when I was trying to do some research on different ways to wrap an omphalocele. One of my first references when looking for information tend to be the blogs of my fellow O moms and I feel that for those moms that will be researching long after Harper has her final surgery, these pictures will be helpful.

My last little bit of bragging as a parent is that the nurses are now calling dibs to take care of Little Miss Congeniality. We have an AMAZING team of primary nurses and, except for the occasional shift, we have days and nights filled with her primary team. They are all so skilled and talented but also patient and caring for Harper and for her tightly-wound parents. So many of the babies they care for are preemies so they aren’t use to taking care of babies as big and responsive as Harper is. She loves to stare people down, especially when she’s attacking a bottle. We had two firsts today - she started making her first cooing noises for me and she flashed Jared her first official smile. I say official because I think some of the grins we’ve previously gotten were gas related. Jared had to fly to Houston for business today so he stopped at the hospital to say good morning before he left. Becky, our nurse, told me that when Jared picked his daughter up, she smeared a huge grin on her face. Of course, Jared called to tell me all about it but I see the writing on the wall. That little girl is just going to flash that grin at her father from here on out and he will be putty in her hands! This could be an issue!

Prayer requests: Steve as he continues to heal, my mom as she is carrying a heavy load with all that is going on and feeling pretty frazzled, Harper as she continues to grow, and, lastly that Jared and I can be led to make the right medical decisions for Harper.

Love to you all,

Brooke




Harper's Watermelon Hat


Harper Loving Her Binkie


Wreck 'Em Tech!