Tomorrow was our first outpatient nephrology appointment and Stephen's first outing with just his Mommy. I was a bit nervous juggling Stephen, the car seat and the stroller by myself coupled with the forecast for downpours throughout the day, but all went well. Especially since I got a prime handicap parking spot near the door to the doctor's office (the parking at Stephen's doctor's office is less than easy...we've gone before when there are no spots available...kind of like the hospital). I feel super guilty parking in the handicap spots, but it sure does make things easier! :) And with some practice the night before, I was able to master the stroller with ease. The hardest part about taking Stephen anywhere is carry him up the 45 or so stairs in his car seat from our front door to the car.
During our appointment yesterday, we met with the dialysis nurse, Deb; one of Stephen's nephrologists, Dr. Weintraub; the nutritionist, Martha; and the social worker, June. We will meet with every one each Wednesday when we have our weekly nephrology check-up. First thing Deb did was check his blood pressure, weight, height, and head circumference. His weight is in the 47th percentile and length is only in about the 10th percentile. At one point in the NICU, his height was off the charts, but it seems he's stopped getting longer and is just getting bigger by putting on weight. Which right now, is ok. At some point if his height doesn't catch up, we might have to start growth hormones to make sure he's long enough for his new kidney.
We also made some slight changes to Stephen's nutrition. Prior to his appointment, he was getting four bottle feeds a day of 48 cc's, I nursed him twice a day, and he was on the feeding pump at night. Since he's been doing so well nursing, I asked if I could nurse him more and the doctor's said ok. So now I only need to give him three bottles and can nurse three times a day. And now that Stephen is taking all 48 cc's in the bottle, I don't have to deal with gravity feeding him via his g-tube each time he eats. I only have to connect his g-tube once a day now when I give him his medicine. Which makes things a little easier for me...much less washing and sterilizing!
Our pediatric geneticist is in the same office as our nephrologist and I was able to connect with Dr. Lewanda's nurse and get our test results. Even though Dr. Lewanda doesn't have an available appointment until September (crazy, huh?!?!), Dr. Weintraub read over our results and explained them a bit to me. What they showed was that They were able to find the mutation for ARPKD in both mine and Bill's DNA. Which is actually a good thing, since it concretely explains how we passed this disease on to Stephen. I've been learning from other ARPKD parent's that some times the genetic testing actually comes back inconclusive and the lab isn't able to find the mutation in the DNA sequence. What this means for us is that if we want to have another baby, they will able to do exact prenatal testing for ARPKD in utero and/or we could do IVF to ensure the baby has no chance of getting ARPKD. Basically, they could fertilize some of my eggs with Bill's sperm and test the embryos for ARPKD prior to implanting them back in me. I have no idea what that little "science experiment" would cost us, but I told Dr. Weintraub yesterday based on what we went through with Stephen when I was pregnant, there is no way I would do anything but IVF the second time around. But don't get excited...we're a long long way off from that!!
The rest of the day was spent making phone calls to insurance, various agencies and programs, and with the hospital lab to schedule Stephen's labs. Stephen spent the rest of the day napping and then the evening and night alternating between restless sleep and crying. Today is a pajama kind of day since the rain finally came today and my goal is to hopefully get him to sleep less during the day and more at night. Like every other Mom's challenge!