“So how is Jill doing?”

So when I woke up this morning, I wasn’t expecting to spend 5 ½ hours in the Pediatric Intensive Care Unit (PICU), but I guess you never know what each day holds. At about 2:45 this afternoon, I was feeding Jill. She ate less than an ounce from the bottle then I went to put the rest of the formula into her G-tube when I realized that the small plastic prong that fits inside the G-tube to keep it closed had broken off and was stuck inside. I quickly realized that this was a big problem since I could no longer feed Jill through her feeding tube…and of course, it all happened before she finished eating. So I called the surgeon’s office they told me to gather up my things and get ready to head to the Emergency Room.
Then they called back to say the surgeon was already at the hospital because he was on-call that day and we could meet him up in the PICU. So long story short the whole procedure took less than 10 minutes to swap out a new feeding tube, but we had to wait for over 5 hours because the surgeon was doing another surgery that went much longer than expected. And unfortunately, I had to witness the whole thing because Jill’s medicine to put her to sleep didn’t take its full effect so I had to stay with her to try to console her. (Bryan took Katelyn for a walk).


So that was today’s adventure. The last few weeks have also been very busy. I’ve been really burned out on going to doctor and therapist visits. I’ve been averaging about 3 appointments for Jill a week. One day I actually had 3 different appointments in the same day. First we started with her therapist visit at 10am in Meridian. Then we drove to the Boise hospital for her 11:30am NICU follow-up appointment. At the NICU follow-up appointment I was given a note that the surgeon was going to try to squeeze us into between surgeries at 1:30pm because Jill’s feeding tube had been leaking. So we stayed at the hospital and had lunch. By 3:30pm the surgeon’s staff told me to go home because they didn’t know how long the surgery was going to last. So I drove home with girls. We unpacked the car. The hospital called and said that the surgeon was now free. So we packed up again and drove back the hospital. But then the surgeon got busy again so we had to wait until 6:30pm to see him. (I really don’t mind waiting for him....He has saved Jill’s life at least 3 times so he is worth the wait).


Anyway, I’m just tired of appointments.


“So how is Jill doing?” Well depending on whom you ask you will get entirely different opinions.


--The NICU follow-up doctor is very worried about her development. He thinks that her delays cannot fully be explained by her surgeries and hospital stays. He thinks the sequence of her development is troubling (i.e. she likes to sit but she rarely ever rolls over, etc.). Anyway, he thinks we should do genetic testing to rule out any other reasons on why her development is so behind.


--The therapist who sees her weekly thinks that her delays are definitely a direct result from the pain she was experiencing prior to her January surgery. She thinks that Jill has made significant improvement in the last couple of weeks and that she will be fully caught up by 18 months (minus walking).


--The Gastroenterology Specialist thinks that it is great that she is maintaining the 3rd percentile in weight. She is following her growth curve.


--The pediatrician, surgeon, and Bryan and I would like her to gain more weight. In fact, this week she actually lost weight because she has had a cold and not eating for half of today probably didn’t help the weight issue.


All in all, she is still super cute. We love her. She is starting to scoot across the room to get toys. We are hoping we can figure out how to get her to drink more from a bottle or cup. We think she is tired of her formula, but we are not entirely sure what her stomach can handle. As soon as she is well again, we are going to try a milk challenge. Basically, we give her a small amount of cow’s milk to see if she can handle it. She has had a milk protein allergy, but most babies out-grow it between 1year and 3 years of age. If she can’t handle the cow’s milk we will keep trying other things: soy milk, goat’s milk, rice milk, etc. I’ve been concerned how reliant she is on the feeding tube. I’m hoping that she will be able to digest and enjoy drinking one of these types of milk.


In other news, my mom had a small stroke the Friday after Easter. She only stayed in the hospital one night and seems to be doing okay. On Saturday night after she was released I had an interesting experience of finding a 24-hour pharmacy to make sure she had blood pressure medicine. She had picked up all of her other medications, but apparently there was a mix-up with the hospital not calling in one of the prescriptions. While I’m incredibly grateful for the health care that we receive in this country, I’m also acutely aware that even medical professionals make mistakes. After the experiences in this past year, I have learned to never leave a pharmacy without double checking patient’s name, medicine, and dosage. And if I’m picking up medicine for Jill I always double check that it is safe for infants.


So besides all that Bryan is playing softball on two teams and redoing our entire backyard. I’m trying to find time to take two online classes to keep my teaching certification current. It looks like it is going to be a very busy summer.