A lot has happened in the past week!
Last Saturday afternoon, my friend Steene, from Arizona
On Monday, Cayden had a physical therapy session for the first time in almost a month. Liz was so impressed at the progress he’s made in that time – he is able to hold his head steady while sitting up and during tummy time, can track objects with his eyes and head with no problem, and has started reaching for and grasping objects. We will keep working on the reaching and grasping as well as more tummy time.
Cayden got to act like a supermodel on Wednesday when he had his first set of professional photos taken. We had a friend of ours’ sister, Jenae Lopez, come to the house for the shoot so we wouldn’t have to take him to a germy public studio and she got some awesome shots. We haven’t seen the proofs yet, but once we do, we’ll share a few on here. She also said she’d post some on her blog once they were edited. Check out her website for more.
Mommy and Daddy had a big night out Wednesday evening. Steene and Laura offered to watch BOTH boys so Jason and I could sneak away for an early birthday dinner. It was the first time since at least November that we’ve been able to go anywhere together without kids and it felt awesome! Of course, we were a little nervous, but we knew the boys were in very capable hands. And since there were two of them, they could run man-to-man defense, at least until Jamison went to bed, which was only an hour after we left. We enjoyed our few hours of freedom and even snuck in a couple of errands. Who would ever imagine that a trip to REI and Home Depot would feel like a vacation?!
For Jason’s birthday on Thursday, we spent the afternoon seeing one of Cayden’s old University NICU attending physicians, Dr. Rosenberg, at the Special Care Clinic at Children’s Hospital. This is the clinic we were hoping to get into for his new primary care, but with the help of a very caring nurse named Barb (who just happens to be the mom of one of our favorite University NICU nurses, Katie – small world, eh?), we came up with a plan to keep the best of both worlds. We’ll see Dr. Rosenberg periodically for all things preemie. They’ll tell us when to wean him from his oxygen and thickened/fortified feeds. They’ll keep close tabs on his growth and reflux. They are the experts on these things and have the latest information at their fingertips on things like the Simply Thick issue. They will communicate with our primary care pediatrician, Dr. Stanford, and keep her informed of their recommendations for Cayden. We will keep seeing Dr. Stanford, whose office is much closer to us and much more accessible in a pinch, for things common to all babies like well-child visits, vaccinations, colds, rashes, etc. Eventually, once Cayden catches up to his peers around age two or three and no longer needs the specialized medical attention from the Special Care Clinic, we will transition back over to seeing Dr. Stanford exclusively. We are happy with this arrangement and know it will be most advantageous for Cayden’s development.
As for the actual appointment, Dr. Rosenberg was thrilled at Cayden’s progress since leaving the NICU. His weight (13 pounds even!), height, head circumference, and developmental milestones are right on track for his adjusted age. They did a spot room air challenge on him and his sats were great, so they recommended taking him off his oxygen for a few hours a couple times a day to start weaning him from it altogether.
We met with a dietician who analyzed his caloric intake and gave us the latest scoop on thickening: Simply Thick packets were recalled because it was found they were not being sterilized during the manufacturing process and that’s what contributed to the development of necrotizing enterocolitis in the three babies who died. The product is also available in a pump (which was not affected by the recall), so that’s what we’ll be switching to. Obviously, with all the recalled packets, pumps are in high demand and short supply, so she made arrangements with a home health care company to deliver a pump to us as soon as one becomes available.
The dietician and Dr. Rosenberg both told us to start giving Cayden a spoonful of rice or oatmeal cereal every day to get him used to the feel of solid food in his mouth. The good news is that being on solid foods also helps control reflux, so that’ll be welcome relief.
The appointment took about two hours, but we left there feeling so comforted and secure knowing we have preemie experts back on Cayden’s team who we can call any time with questions or concerns. I think we’re back on the right track!
Thursday evening, we picked up a bunch of frozen breast milk from a friend of ours who wasn’t able to use it with her baby because she didn’t tolerate it for some reason. Our friend donated about half of it to a milk bank but was kind enough to ask us if we wanted some. I figured it would be a godsend to have some extra supply in the freezer. It would take some pressure off of me trying (and currently failing) to keep up with Cayden’s demands and might mean that I could stop pumping a few months earlier than I otherwise would have.
After consulting with our doctors and making sure the screening tests all came back clear, we happily and gratefully accepted as much as we could pack into our freezer. We started Cayden on it that night, but now we’re worried that maybe he’s not tolerating it either. Our first clue that something about it is different was when we tried to thicken it with the same amount of Simply Thick we use with my milk and it didn’t do much. We had to bump it up to ½ strength instead of ¼ strength to get it to a similar consistency as mine. Cayden has been very fussy while feeding with her milk, even to the point of refusing to finish a bottle. He writhes and cries and just can’t seem to get comfortable. At first we thought maybe it just tasted different, but then we noticed he’s been super gassy, which he normally is not. So as of this evening, we started an experiment – we’re going back to my milk to see how he tolerates it for the next 24 hours. If he goes back to doing well, we’ll give him one more bottle of the other milk and see how he does. If it turns out that he can’t tolerate this gifted milk, it will just break my heart to tell our friend. She worked so hard to pump all that liquid gold! Hopefully the milk bank will still accept it if we can’t use it.
Friday night, we did another overnight room air challenge. Neither of us got very much sleep because the monitor kept alarming all night long, but we’re pretty sure it was because the sensor wasn’t picking up well at those times. Both Jason and I think Cayden did really well, but we’ll have to wait until at least Monday to find out. We’re keeping our fingers crossed that maybe he can come off of the oxygen for good very soon!
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