The Murphy's have had a very busy few months. Kinley finally got to come home mid-November. It was very exciting to have everyone home, but also a little nerve wracking for Mom and Dad. Kinley came home on a feeding tube since she wasn't quite finishing all of her feeds by mouth, but once we got home she became a pro and we were able to take it out a few weeks later. Both babies are now doing great and continuing to grow, grow, grow! Cooper is now over 15 pounds and Kinley is over 12 1/2 pounds. Both are actually on the weight chart for their real age (instead of their adjusted age which is 3 months), though they are understandably at the lower percentiles, especially Kinley! Interestingly enough, both are measuring "short" for their age (I know, who'd have thought?), but our pediatrician explained that they still have a lot of catching up to do and thinks that they will indeed catch up.
We've been to lots of doctor visits since they both came home. Kinley still has a paralyzed vocal cord and is being followed by an ENT. Next week she will have a swallow study done to make sure she is not aspirating anything when she eats. She seems to be feeding fine, and doesn't choke or gasp, but the doctor explained that she could be aspirating tiny amounts and we wouldn't know it. Over time, this could lead to significant long term lung damage, so we definitely want to get it checked out. In June, they will scope her again to see if her left vocal cord has recovered any. Unfortunately, there is not a lot of published data on infants with vocal cord paralysis due to PDA ligations, so we really don't know what the chances are that it will recover. If it doesn't, we just hope that her right vocal cord will be able to compensate. She does make some sounds, but they are pretty raspy and quiet. She did say that most kids are able to talk just fine, though they are very quiet.
Kinley is also being followed by a dermatologist because she has multiple hemangiomas on her skin. Full term babies can have hemangiomas too, but infants who are premature, female, a multiple, or white are at even higher risk. Since Kinley can check off all 4 of these it makes sense that she has lots of them! Most are tiny and no larger than a freckle, but she has several that are a little larger. Fortunately at this point they are only a cosmetic issue. The dermatologist assures me that they will "go down" and fade, and most should disappear completely within a few years. The larger ones may leave a pink spot or some loose skin, but this is something that can be fixed with laser treatments later on. Cooper has a few as well, but all of his are pretty small.
We will check in with the dermatologist every few months just so she can keep an eye on them.
Cooper has also had a few visits to the doctor because at his 3 month check-up the doctor discovered he had an inguinal hernia. The surgeon wanted him to grow a little more so the surgery would be safer, but he is now scheduled to have the surgery to correct it on February 11.
Other than those few issues, both babies are doing great! Everyone asks if we are getting much sleep and the answer is: more than when they first came home, but still not much. They are both still eating about every 3 1/2 hours around the clock, though we are starting to stretch it out to 4 hours a time or two at night. Cooper could eat more and go longer in between feedings, but Kinley's tummy is still pretty small and she has fairly significant reflux so we can't increase her volume too much. So while I could stretch Cooper out, it is much easier to keep them on the same schedule. Yes, I will be very happy in a few months when we will hopefully be getting more than 2 1/2 hours of sleep at a time, but we are just so thrilled at the progress and growth the babies are making and it's worth it to see them so big and healthy.
Both babies are also doing well developmentally and are on track for their adjusted age, and in some cases even ahead. Both are rolling over from their tummy to their back, and Cooper has almost mastered going from his back to his tummy. They are finally starting to tolerate fairly long periods staying propped on their elbows during tummy time, and both are now working on sitting. Cooper is very vocal and coos and laughs all the time. Kinley tries so hard to make coos and babbles, but with her vocal cord it's hard to hear! She also laughs and it is so funny because most of the time it's silent, though occasionally we get to hear it!
Overall, we are very pleased and happy with how both Cooper and Kinley are doing. Though we still have a few challenges to face, they are minor in the grand scheme of things! To those of you who have continued to reach out to us and pray for us- as always- thank you!
