Monday, August 4th - Kinley Hates Mondays

Kinley's nurse today is Jen. When I arrive she tells me that Kinley ate her entire 30 cc bottle at 8:00 am without any problems, but she is a little worried about Kinley. The reason she is worried is because at one point last night Kinley had a residual of 30 ccs and then, between 6:00 and 6:30 am, she threw up about 30 ccs. Kinley also has not pooped much since yesterday and she has been very fussy and inconsolable. Jen is planning on asking about giving Kinley a suppository, during rounds, to help move things through, but before rounds arrive Kinley has a pretty good sized poopy diaper.

Dr. O's two week rotation with Kinley is over. This means Kinley has a new doctor taking care of her for the next two weeks. It is Dr. P. Dr. P is the head of the ECMO team and she knows Kinley pretty well after her 21 days on ECMO (heart and lung bypass). During rounds Dr. P decides to increase Kinley's bottle feedings to 35 ccs each and starting tomorrow they will lower Kinley's methadone dose from 0.70 mg to 0.62 mg. The NICU pharmacist has created a methadone weaning schedule for Kinley and she should be completely off of methadone around August 25th. This does not mean that Kinley will be at Children's Mercy until then because she can go home on methadone. Also, Dr. P says that it is definitely possible for Kinley to be up to full (90 ccs) bottle feeds by then, but it will all depend on how well she eats and gains weight. I am told that Kinley is gaining weight appropriately. She is, and has been, along the 50th percentile for her weight, but they will need to do some checking on where she is on length and head circumference. We are really hoping that Kinley can make good progress with her bottle feeds because we really don't want her to come home with an NG tube. Not that that would be the end of the world, but I can't say that we're too excited about sticking a tube up Kinley's nose.

Around 10:50 am (10 minutes before she is supposed to get her next bottle feed) Kinley vomits around 15 ccs. 15 ccs is not a ton, but it is a bit concerning because she should have almost nothing in her belly and we cannot see any reason why she would vomit when her NG feeding ended over an hour ago. Kinley ends up getting her 11:00 am bottle feed around 11:15 am. Hopefully she would have done this anyway, but after emptying her belly she takes all 35 ccs from the bottle without any issues. Before starting the remaining 55 cc NG feed, Jen gives Kinley her vitamins with iron supplement.

Around noon Kinley has a huge poopy diaper. Kinley got super upset when I had to move her back into bed to change her diaper and she did not want to calm down until Kathy (the surgery nurse practitioner) picked her up. But before Kathy could hold Kinley she had to check out Kinley's neck. Kinley still has a stitch in her neck from when they took her off of ECMO, but it should have fallen out by now. Kinley was too fussy to examine it well so Kathy had to stop and that is why she ended up holding Kinley.

Around 12:45 pm Kinley throws up about 30 ccs. Jen calls Kinley's nurse practitioner to give her an update on all of the vomiting and fussiness. All of Kinley's throw up has been a mixture of mucus and milk. The fact that it is not green in color and that she is pooping rules out the likelihood of a bowel obstuction causing her discomfort and vomiting. The nurse practitioner says to continue with the feedings as scheduled and see how Kinley does. Jen and I decide to give Kinley's entire 2:00 pm feeding through her NG tube because she is asleep. Earlier, Jen and Kathy (the surgery nurse practitioner) had agreed that Kinley looked exhausted and another reason why she might be so fussy and cranky is because she is fighting to stay awake.

Later in the afternoon, after what feels like hours of constant screaming by Kinley, we begin to think it might be gas that is making her irritated and uncomfortable. This time it is Jen who is able to calm Kinley. I am overjoyed that she is not screaming in pain, but it is also frustrating when it feels like everyone else can calm Kinley except me. I know that Children's Mercy is staffed with great nurses, but what it wrong with me that my own daughter can't find comfort in my arms.

Kathy, the surgery nurse practitioner, and a surgeon return to remove the stitch/scab in Kinley's neck. The surgeon simply pulls it off, but says that she will do no more because the remaining piece of the stitch has adhered to the blood vessel. We will simply have to leave it alone and let it heal on its own.

Dr. P stops by and we update her on Kinley's day. Kinley typically has higher blood pressure levels than she should for being 2 month old, so I ask her about it and if there is anything we should be doing about it. Dr. P says that they normally do not prescribe any blood pressure medications for babies unless their blood pressure is up around the levels of an adult.

Kinley got super fussy and screamed for around 30 minutes before her 5 pm bottle feed. Kinley took her bottle really fast and then started coughing. She threw up most of what she just ate from the bottle while she was coughing. Jen thinks Kinley may have thrown up from having too much air in her belly (from her screaming episode prior to feeding) so she decides to burp Kinley. Jen was absolutely right, Kinley had a massive amount of air in her belly. We will need to remember that Kinley needs to be burped often and she is a very hard to burp, so it takes a good while to get all the air out.

Kinley ate her entire 8 pm bottle feeding, which was a 35 ccs. By the time she got her bottle she was starving since she threw up a good portion of her last bottle. Once the tube feed portion of Kinley's 8 pm feed was complete she vomited yet again. This time it was between 20 and 30 ccs. Kinley needed a change of clothes, new bedding and a bath after this episode.

Overall today was really frustrating since something was obviously bothering Kinley, but we had no idea what, and nothing that we tried to do to help her seemed to work.