Born May 25th, 2008
2:59 pm
6 pounds 13 ounces
Length 19 3/4 inches

Saturday, August 9, 2008

Saturday, August 9th - Kathy's 1st NG Placement

Kinley had a quiet night last night, with no vomiting. Yea! Katie, Kinley's day nurse, is back today. Katie fed Kinley at 8:00 am and she took 41 ccs. The rest (49 ccs) of her 90 cc feed was given through Kinley's NG tube over 1 hour. Kinley had a small (5 - 10 cc) vomit after the NG portion of her feeding was finished and we had to change her outfit.

Dr. T is doing rounds on Kinley today. (Dr. P is off today. She can't work all of the time.) The change for today will be to compress Kinley's entire feeding, both bottle and NG, to run over a total of 1 hour. This will give Kinley close to 2 hours, between each feeding, where she is not receiving any food. Hopefully this will allow her to feel more hunger and eat more from her bottle feedings. Previously, Kinley's feedings had been running pretty close to each other so she was not always very hungry for her bottle. The maximum amount of time we are allowed to try and feed Kinley by bottle is half an hour. (This has always been the rule with bottle feeding, but I think I have forgotten to mention it in previous posts.) This will leave half an hour to NG feed anything Kinley does not take by bottle. Dr. T also mentions the possibility of dropping one feeding per day since Kinley is 2 and 1/2 months old, but will let Dr. P make that decision.

At Kinley's 11:00 am feeding she took 60 ccs from her bottle. Then she got her vitamins with iron and nystatin, for thrush. The remaining 30 ccs, of her total feed, were given through her NG over half an hour.

Kinley slept the entire time from finishing her 11:00 am bottle until it was time to feed her again at 2:00 pm. Her residual (food remaining in her stomach) before her 2:00 pm feeding was zero ccs. Way to go baby girl! She ended up eating 55 ccs by bottle and getting the rest through her NG.

Kinley's residual before her 5:00 pm feeding was a different story. She had 15 ccs of residual, but it did not seem to affect her much because she took 56 ccs from her bottle. Again, the remainder was given through her NG over half an hour.

At 8:00 pm, after shift change, Kinley took 49 ccs and then the rest by NG. A little while after the NG portion of Kinley's feeding was over we decided that it would be a good time for Kathy to practice putting an NG tube down Kinley. Kinley's current NG tube was not sticking to her face well and it was only a matter of time before she pulled it out herself. Kathy did awesome! She got it down Kinley and in place on the very first try. You wouldn't of known that from listening to Kinley scream, but she does that anytime anyone puts a tube up her nose. I can only hope my first attempt at placing an NG tube goes as smoothly, but I will save that for another day.

Friday, August 8, 2008

Friday, August 8th - New Feeding Plan

Katie is back today to take care of Kinley. She lets us know that Kinley ate 30 ccs at her 5:00 am feeding. Kinley had been getting a bit gaggy and her night nurse didn't want her throw up and lose any of her feeding. So she added the remaining portion of her bottle to her NG feed. At her 8:00 am feeding, Kinley took her entire 55 cc bottle for Katie.

For a while now, Children's Mercy has been trying to give Kinley a hearing test, but it only works if Kinley is asleep for the entire test. So far they have not been lucky enough to catch Kinley sleep. She is asleep this morning so they decide to attempt the test. It is amazing that any baby can stay asleep for the hearing test. They have to attach 3 sensors to the baby's head and place a hearing device over each ear. We are able to get everything attached and start the test, but Kinley wakes up early into the test and they will have to try again at a later time. We are not worried that there is anything wrong with Kinley's hearing because she kept waking up each time they started and re-started the test.

There is a big change during rounds today. Kinley will be allowed to eat as much as she can by bottle and then receive the rest through her NG tube. It is hard to say how Kinley will do since sometimes she falls asleep during her bottle and other times she is awake for a good while after her 55 cc bottle feeds.

Kinley took 60 ccs at her 11:00 am feeding, but we had to work hard to keep her awake and eating. During the NG portion of her feed Kinley receives her vitamin with iron and nystatin. Nystatin is for her thrush and it is given orally to make sure that it coats her mouth.

Kinley's new feeding plan, to a certain degree, allows her to tell us when she wants to eat. We cannot let her get too far off her feeding schedule, but we can give her a little more time to tell us that she is hungry. Her normal feeding schedule is to eat at 2:00 pm, but she is asleep. Therefore she must not be hungry, so we let her sleep. She wakes up around 2:30 pm. Katie has to give Kinley her bottle feeding because Kathy and I have to meet with the discharge planner to go over putting in an NG tube. Today we practice on a doll, but soon we will have to do the real thing on Kinley. If Kinley comes home with her NG tube both Kathy and I will need to know how to put it in in case she pulls it out or throws it up.

Thursday, August 7, 2008

Thursday, August 7th - Kinley has Thrush

When I arrived I found out that Kinley has had a good night and morning because she has kept all of her food down. Nancy, from occupational therapy, has just finished doing some rolling and tummy time with Kinley.

During rounds, Kinley's bottle feeds will be increased to 55 ccs and the remaining 35 ccs will be given through her NG tube over the time frame of 1 hour.

I ruined Kinley's non-vomit streak during her 11:00 am bottle feeding. She had a cough/gag and vomited up about 10 ccs. She did finish the bottle though.

Nancy, from occupational therapy, gave Kinley her 2:00 pm bottle since she hasn't fed Kinley in a while. Kinley had another cough and gag and ended up throwing up about 20 ccs. Once again, she was still able to finish the bottle though. Kinley has been getting tired at the end of her bottles and we believe this is the reason for her vomit. While she is tired, it looks like she is letting her mouth fill with milk, but then she forgets to swallow. Once her mouth is too full with milk it begins to run down the back of her throat causing her to cough, gag and vomit. Because of this Nancy decided to make a new feeding plan for the nurses to follow. It includes when to burp Kinley and when to stop feeding if she is getting tired.

Kathy gives Kinley her 5:00 pm bottle and she eats 30 ccs before getting too tired. We decide to stop because we don't want her to throw up anything. At this point in Kinley's recovery it is much more important that she keeps down her food/nutrition than finish her bottle feeding. The remaining portion of Kinley's bottle is added to her NG feed.

We return from shift change to find out that Kinley has thrush. Thrush is a fungus that grows in the mouth. It is mainly common in babies. Indicators of thrush are a white tongue and difficulty eating. Overall we feel that Kinley has been eating pretty well, but maybe she will do even better once her thrush is gone. Kinley will be started on nystatin to help get rid of the thrush.

At 8:00 pm Kinley eats her entire 55 cc bottle and didn't even get tired. Hopefully this means we caught her thrush early and it will be easy to get rid of. Kinley stayed awake until at least 10:00 pm when we had to leave.

Wednesday, August 6, 2008

Wednesday, August 6th - A New Face at Rounds

Kinley's nurse today is Rachel. She lets us know that Kinley had a pretty good night last night, only one small vomit (10 ccs) right before her 11:00 pm feeding.

There is a new face at round today, the Discharge Planner. She sets up an appointment to meet with Kathy and I on Friday at 2:00 pm. During this meeting she will go over placing an NG tube, feeding through the NG tube and follow-up appointments for after we are home. We do not have a discharge date yet, but Kinley could go home the way she is right now. The only change made to Kinley's care during today's rounds were that we can bottle feed up to 45 ccs if Kinley wants to eat it.

Apparently Kinley is a little jokester. She had a poopy diaper this morning and while it was being changed she decided to poop some more and get it all over her bed. Needless to say, all of her bedding had to be changed. Sorry, no picture.

At Kinley's 11:00 am feeding she takes 40 ccs from her bottle. Kathy and Nancy (from occupational therapy) had to try and keep Kinley awake to take the last 20 ccs.

Dr. P stopped by Kinley's bedside this afternoon to talk more about the possibility of being discharged. She said that it is kind of up to us on when Kinley can go home. Technically, she can go home the way she is, but Kathy and I will need to decide if we want to take her home soon, with an NG tube, or wait and see if she can start taking full (90 cc) feeds and then go home without an NG tube.

Kinley woke up crying right before 2:00 pm. I am hoping that the reason for her crying is because she is hungry. That would mean she is starting to get on her feeding schedule and hopefully it means she will eat all of her bottle. Before her bottle though Rachel needs to check Kinley's residual, but she is not able to pull anything back, not even air. This means that her NG tube may not be in the correct place so she has to take it out and then put it back in to make sure it is in her stomach. After her NG tube is back in place, I sit down to feed Kinley. She was hungry. She ate 44 out of the 45 ccs, but she did take the last 20 ccs with her eyes closed. These bigger bottle feedings are really wearing Kinley out.

Tuesday, August 5, 2008

Tuesday, August 5th - First Talk of Going Home

When I arrived at Kinley's bed this morning Rachel, Kinley's nurse for today, and Delores (NNP) were looking at Kinley. Rachel told me that Kinley had just thrown up the first 10ccs of her 8 am bottle and that she was going to give the rest of the bottle through her NG tube along with the 55 ccs that she gets through the NG anyway. We discussed possible reasons for Kinley's increased amounts of throw up and basically threw out all sorts of ideas from reflux to withdrawal symptoms, gas pains and everything in between, but basically we just don't know what is causing her problems. Delores thinks that Kinley has been fussy because of the pain associated with reflux, so she ordered some Tylenol for Kinley, but it did not seem to touch her. This didn't really surprise me because no medication really touches Kinley in normal doses. She needed really high doses of her pain meds while on ECMO. Delores also suggested some sugar water to dip Kinley's binky in. The sugar water helped for a little while to calm her down.

After the initial 10 cc vomit this morning, Kinley was able to keep the rest of her 8 am feed down. Kinley did get fussy towards the end of her feeding, but we found that warm blankets over her stomach, laying her on her right side and patting her back/butt made her feel a little better and she actually slept for a little while in this position.

During rounds today there was one change made that I was really happy about. We are going to increase her erythromycin dose. Kinley has been getting erythromycin to help with her gut motility. A while back, Kinley was having so many poopy diapers that we decreased her erythromycin dose, but maybe we decreased it too much. She is not having nearly as many poopy diapers, but her residuals have been higher, which means things are not moving through her system very well. It will take some work, but we need to find a happy medium between an excess of poopy diapers and high residuals. One other thing that came up during rounds today was the possibility of Kinley going HOME!! This was actually bitter sweet news. Dr. P said that Kinley will most likely not be eating full feeds from the bottle any time soon, so we will most likely be going home on tube feeds. This means that Kevin and I will have to learn how to place Kinley's NG tube because it comes out some of the time when Kinley throws up. Seeing how much Kinley hates having her tube placed does not make Kevin or I very excited to have to be the ones to put it in, but we will do what we have to for Kinley to be healthy and at home. Dr. P said that Kinley can go home on her methadone, with a weaning schedule. It looks like for the time being we will just try to work out a feeding schedule that will work for Kinley while she is in the hospital and one she can go home on. We still need to have her gain weight consistently, and since she lost 100 grams last night, we are obviously not there yet.

Kinley was actually resting pretty well and had a 30 cc residual just before her 11 am feeding, so Delores said to just give her 90 cc feeding through her NG tube and run it in over 2 hours instead of 1 and 1/2 hours. This sounded like a little setback to me, but Delores just wants to give the increased erythromycin dose some time to work. It can take a day or so. We will just have to see how Kinley is doing before each feed today and go from there. Kinely sure likes to make sure and remind us every once in a while that she is running the show. Towards the end of the feed Kinley got pretty fussy again, but I used the warm blankets, laid her on her right side and patted her back again and it seemed to help a little.

Right before Kinley's 2:00 pm feeding (around 1:50 pm) she threw up at least 20 ccs. She had to have her clothes and her entire bedding changed. Once she was cleaned up and ready to go, she ate 40 ccs from her bottle. She is only supposed to be getting 35 ccs from her bottle, but Rachel put in an extra 5 ccs in case there was any excess drooling. To make sure Kinley was not swallowing too much air I burped her twice during the bottle and once afterwards. She had some really good burps each time. Definitely starting to think that we have not burped Kinley well enough in the past and that extra air was the cause for some of her discomfort. The remaining portion (60 ccs) of Kinley's feeding was given through her NG and she kept it all down. I even burped her randomly between feeds just to make sure she didn't have any excess air in her belly. She ended up sleeping a good portion of the time before her 5 pm feeding.

Kinley's 5:00 pm feeding went really well. She ate her entire bottle (35 ccs plus the extra 5) and got the rest through her NG tube. When I had to leave for shift change, Kinley had still kept all of her food down. We called in later that night, just to check up, and Laura told us that Kinley's 8:00 pm feeding was given entirely through her NG tube because she was asleep and that, as of 10:45 pm, Kinley had not thrown up.

Monday, August 4, 2008

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.

Sunday, August 3, 2008

Sunday, August 3rd - Absolutely No Changes

Today was a very quiet day. For the first time since Kinley was born there were absolutely no changes made during rounds.

While Kinley was awake Kathy and I did a little tummy time and rolling with her. She is doing so good with holding her head up. Kinley and I also got a bit further in Harry Potter. (In case any of you are huge Harry Potter fans. Yes, I made sure to start with Harry Potter and the Sorcerer's Stone.)

Kinley ate all of her 30 cc bottles today and only vomited a tiny bit during her 2:00 pm feed. But we know that it was probably due to her vitamin with iron because some of it it was in her throw up.