9:00 am High Risk Neonatology with NP Diane
9:20 am Pediatric Cardiology
10:10 am Opthamology/Eye Institute
Now I completely understood before going down there that this schedule was very unrealistic. HR Neo. normally takes an hour and half to 2 hours alone. We gave it our best shot though. The synopsis of each appointment is as follows:
9:00 am High Risk Neonatology
At 9:00 we arrived at the Pediatric Specialty clinic. NP Diane came and got us at 9:15 am. (See how late we're already getting!) NP Diane did a lot of things with Rylee which included picking up a cheerio, passing a block from one hand to the other, banging to blocks together and responding to her name being whispered behind her. Those were a few. We talked largely about Rylee's feet. See why?
Troy's normal feet
Rylee's weird feet
So NP Diane wants Dr. C to get us special shoe inserts to correct this. The next thing we talked about was her diet. That is something that will constantly and forever be talked about with us. Her weight was 14 lbs, 5 oz and she was 25 7/8" long. Her diet consists of 4 oz of 30 k/cal Neosure every 3 hours at 20 oz per day and cereal at breakfast and dinner. We had tried baby food before but she didn't seem interested. We are going to change many things.
1. Her new orthoped inserts!
2. More time in the high chair with veggie/fruit puffs to work on her fine motor skills. (Making her pick them up with her thumb and pointer finger)
3. No more Glycerin Suppositories. Her stools are way to hard and digestive system is way too immature. NP Diane is concerned with the change in her head pressure when she bears down and when she gets "full" the intestines squishing her stomach causing her shunt to be pinched off, CSP (cerebral spinal fluid) to back up, resulting in infection like meningitis. So she is now on Miralax. (**FUNNY STORY** My grandma, bless her heart, also takes miralax daily. She was hospitalized last month and the nurse gave her a packet of miralax to take since she was taking it daily. As Grandma poured it into her cup, she looked up at me and said [I quote] "I'll be shitting before I get to the car." It was hilarious. That ol' Grandma can always make me laugh!)
4. We are changing her diet!! No more stinky, expensive Neosure! Now we get to switch her to Pedia Sure with Fiber! It comes in Vanilla. It's sweet and tasty. And it's 30 k/cal already! I don't know the cost of it yet. I haven't got to research it but I am sure it's going to cost about the same as Neosure. Oh well. Grow baby Grow!!
That sums up the hour long, rushed appointment with NP Diane! We see her again in 6 months!
9:20 am Pediatric Cardiology
We were instructed to go straight up to the 3rd floor via elevator F (we were at elevator F, 2nd floor for the Pediatric Specialty clinic), take a left out the elevator and go to Pediatric Radiology for a chest xray. Found that easily enough. We did the chest xray. I got to see it. I could see the shunt tubing snake its way down her chest and pool in her belly. Cool! Then we had to go back down to the Pediatric Specialty clinic where we had to wait in the waiting room for 15 minutes until a room opened up, it was that busy! Jill, a Pediatric Cardiology resident, came to visit us once we got a room! She went through Rylee's entire medical history with me. Then Euli, I don't really know her title, came and stuck all the echo stickers on Rylee's chest, arms and legs and hooked wires up to each sticker. I have had this done before and so has Rylee. She must have remember because she laid very still. They got a good reading. Resident Jill ordered blood pressures on each of Rylee's arms and legs. Done! Resident Jill and Dr. Reinking came and talked to us. The hole in her heart has closed! The back sloshing of blood has probably not. She has a large heart, large kidneys, small liver. She looks chubby in the belly because of her big organs. Right now, we're not going to worry about her heart. We'll do another echo in 12 months. They sent of off to our next appointment.
10:10 Opthamology/Eye Institute
We had to go from elevator F, 2nd floor to elevator L, 1st floor. I put Rylee in the Moby D and we cruised over there, almost ran. We arrived at 11:37 am. Only an hour and a half late, no big deal just that the Eye Institute was calling the Pediatric Specialty clinic harassing them to send us over! We got there. They dialated her eyes. I feed her while we waited for the drops to work. Rylee fell asleep. (We got up at 5 and this was her first nap of the day, she talked all the way down to Iowa City) After 30 minutes, they took us back and looked in her eyes. Done! Come back in 12 months! YEEHAW!
After we were completely done, I loaded Rylee in the Moby and we ran to the cafeteria, hoping and praying they would have cheese pizza and pineapple. No such luck. I got Pepperoni and sausage pizza and a container of fresh pineapple (score! I should've got 2!) Then we walked to Parking ramp 2, rode up to the top, 4th floor and loaded up in the car and came home!
We picked up Troy, ate Chicken Tacos for dinner and at 9 pm climbed into bed!
At 11:30 pm, Troy coughed, rather he barked. He had that croopy, barky cough that makes the throat feel really yucky. I sat up and reached over for him. He was burning up, 102.3°F. YIKES! Kris was finishing up with work and we decided we'd have him stop at WalMart to pick up Tylenol meltaways. Those worked perfectly once he got home. There was no fighting Troy to take those. At 3 am, the temp was 99°F and close to gone. However, Troy kept putting his hand over his ear. We just had the tubes put in to prevent ear infections and this seemed like a classic Troy case of double ear infection. We were scheduled to see Dr. C in the morning so I decided I would call in the morning and have him added to the schedule.
Today, Rylee was scheduled for Synagis injection and 1 year well child. Normally at 1 year the do a blood draw but not for this girl! I called right at 8 to schedule Troy's appointment for 11 also and got an appointment with the other doctor at the clinic. I was suppose to meet Kris at the Cuba clinic at 11 but since I had been gone from the work the day before, was not coming back after their appointment due to Troy's fevers, and was going to be at another branch on Friday, I had major work to get done in a small amount of time. Plus, it was, of course, a major problem day. So I didn't end up pulling out the parking lot until 11 and getting to the clinic at 11:15. Poor Troy was in a room with a nurse he didn't know while daddy and Rylee were in another room. I showed up in time for Dr. C (the other doctor was too busy at the time) to take a peak in his ears and listen to his chest. Ears were clear and chest was full. He prescribed antibiotics for 7 days. Way, on the way to appointment 2.
Rylee was looked over by Dr. C who was a little disappointed that he didn't get any giggles. Dr. C agreed to the Miralax and was going to check on the shoes for us. He also wants to see her at 15 months instead of 18 months. Rylee got 4 shots with 1 shot being pushed off to 18 months. She's all vaccinated and in tip top shape!
This afternoon, I am nursing Troy back to health! I also filed my taxes! It didn't take long to do. So those are done. Need to do Kris's financial aid and then I'm finished for this year!
I am going to go snuggle with Troybaby and a book. Good evening all!
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