On the Upswing Again

Things turned around for June by the end of the week in some regards, and in others, it is still just a waiting game. After her fun photo shoot at the pumpkin patch, June took a trip to get a VCUG (Voiding Cystourethrogram), which provided images of her urinary system. Because June had blockage in her kidneys, this test would tell them whether urine was refluxing back up into her kidneys, making her more susceptible to urinary track infections. June's bladder was filled with contrast, and then they took X-Ray pictures to see if her urine was refluxing. They were able to tell right away that she did not have reflux. Toward the end of the week, they also did an ultrasound of her kidneys to check the blockage. June started out with mild blockage on her right side and moderate blockage on her left. When they did the ultrasound last month, the blockage on her right side had resolved, and the blockage on her left side was mild. We are waiting for the results.

They tried removing June's wound vac again at the end of the week. The reasoning was because the repoggle (tube in her mouth) was still in and was sucking most of the fluid. (The repoggle was sucking out 70-80 milliliters of fluid every eight hours compared to the wound vac sucking out less than 20 milliliters every eight hours.) Unfortunately, the pressure dressing they replaced the wound vac with was soaked by the end of the day, so the wound vac was put back on. The surgeons put a different type of wound vac, and this one seems to have some difficulty staying on. This weekend the tube sucking on the sponge covering the wound fell out multiple times. I will post a picture of June's stomach at the very bottom of this post (with lots of space in between so not surprise anyone who would prefer not to see it). It looks so much better, so that's why I'll post it. I'm not going to post any of the previous pictures because they can turn the stomach of someone who is not squeamish. 

One piece of good news is that June's repoggle was pulled:

Goodbye annoying tube in my mouth!

The other good news is that Jason finally got over his virus and finished up his antibiotic so he was able to see his baby girl again:

Throughout the week June has continued to lose weight. Not a lot - about 15 grams every other day - but her weight is not headed in the right direction. During the week she dropped from eight pounds, four ounces to eight pounds, one ounce. It doesn't sound like a lot, but that took her from above the tenth percentile to well below it. Again, not super alarming because many babies on the unit are not even on the growth curve. Right now, June should be gaining about five to seven ounces a week. Her doctor decided to increase how much food she was getting an hour from 25 milliliters to 28 milliliters. They tested my milk to make sure it had enough calories in it as well. On average, milk has 20 calories per ounce, and mine ended up having 21 calories an ounce, so they knew she was actually getting what they were calculating her caloric intake to be. They decided to also change the way the milk, formula and fish oil were being mixed together to ensure she started getting more protein. 

They have been measuring June every other day. From Friday to today, June jumped 13 ounces from eight pounds, one ounce to eight pounds, fourteen ounces. Unfortunately, such a significant jump can not necessarily be good either - it might mean she is retaining fluid. She has had her repoggle pulled in that time too (which was pulling quite a bit of fluid out of her) so her weight gain could be attributed to the excess fluid in her body. They are going to continue monitoring her weight for now.

They decided to discontinue June's seizure medication tomorrow. The Neurologist believes that she was having febrile seizures because she was so sick from the infection after her second surgery. They will continue to monitor her closely. This week will also bring another echo of her heart to monitor the holes and how it is functioning.  With Jason able to be at the hospital again, we will go back to our routine of him spending nights and me spending days and some evenings with June. We are now four weeks out from her last surgery, so we are hoping that they can start to figure out how they are going to feed her; however, that is dependent on the hole closing in her stomach. As of right now, I would estimate that we have at least a month before we go home, but only time will tell...

The scar on June's back is from her first
surgery to repair her TEF.

*************************************************************

The dark red and purplish area on June's stomach is where the two inch incision from her third surgery split open because of the infection. In the dark red area, you can still see (not in the picture but in person) the pinprick-sized hole in her stomach. The tissue, and now skin, have started to grow back, and it is healing. The white tube is how June is currently getting her food. It is snaked in through a hole in her stomach where one of her G tubes had been placed. The make-shift J tube goes through her stomach and far down into her small intestines (past the blockage that was repaired in her second surgery). This tube is not secured - we have to watch very closely it does not get pulled because then the way to feed her is lost, which is why she cannot come home with that particular tube.