Happy 3 Month Birthday!!!

Today marks Kinley's 3 month birthday and how do we celebrate? We take away her narcotics. Yep, today is the first day since Kinley was born that she will not have any narcotic pain medications. This is the stop date of her weaning schedule for methadone. One less drug to give her everyday. Mom and dad like that...we will see what Kinley thinks later on today.

Yesterday, after Kinley's 5 pm feeding she threw up and out came her NG tube again. Kevin and I decided to let her rest and tried to feed her without her tube in to see how she did. She did a lot better eating without that stinking NG tube down her throat. She also did not scream as much during her feeding. And...Kinley at 94 mls from her bottle. That is only 6 ml short of a full bottle, so we called it good. We left the tube out again for her 11 pm bottle and Kinley ate 82 mls. She seemed a lot happier eating without the tube again. Also, she took her erythromycin and iron orally. So, Kevin and I have decided to try something new with Kinley just to see if it works. At this point Kevin and I will try anything even if it sounds silly, but we won't compromise Kinley's health. We did put her tube back down just before bedtime so that she could get her tube feeds at night.

As it was, Kinley was getting her NG tube replaced 2 to 3 times per day since she was throwing it up quite a bit. Today Kevin and I pulled out her tube before her 8 am feed. We are going to let Kinley eat today without the tube in to see how she does, and if it helps her feel better when eating from the bottle ( i.e. less screaming). We will track how much Kinley eats at each feed during the day. At the end of the day we will put the tube back in and feed her through her tube during the night like we normally do. We will also supplement her night feeds with the amount of milk she did not eat during the day, so the total intake for 24 hours should remain the same. At least this way Kinley can try to eat without her tube down her throat, and worst case scenario is she gets her tube replaced once a day. It seems to me that would be better than 2 to 3 times per day if we continue to do what we are doing now. We will see what happens with all of this today.

We had another visit with a home health nurse today. Everything looked good as far as Kinley's health. I had asked the nurse to listen to Kinley's lungs because I thought she was sounding a little junky, but she said Kinley sounded good. Kinley weighed 11 lbs and 8 oz when she was weighed today. This means that since her last visit with the home health nurses, she has gained only 15 grams per day. The goal is 18 to 30 grams per day. This is not a true comparison since Kinley was weighed on different scales, but I do think it is hard for Kinley to maintain a good weight gain throwing up as much as she has been. The home health nurse that we had today said that as long as we monitor what Kinley takes in during her bottle feeds and make sure to supplement that back in with her night NG feeds, she didn't see a problem with us trying it. She also mentioned that we may try a higher flow nipple on Kinley's bottles because one of the reasons we have to stop her bottle feeds is because she gets too tired.

I have been trying to get some more help and advice with Kinley's feedings all day. I first called her pediatrician's office and they told me I need to call the dietitians at Children's Mercy. The dietitians at Children's Mercy said that they can't help us because Kinley is not a patient of Children's Mercy anymore. I explained that she is going to be a patient in the special care clinic, but we could not get an appointment there until September 2nd. Since the special care clinic could not get us in any earlier than that Kinley is technically not a patient and we were referred back to the pediatrician. (I did call the special care clinic yesterday after Kinley's last throw up to see if I could at least talk to a nurse and was told that if I was concerned about Kinley I just needed to take her to the emergency room. Hopefully once Kinley is a "real" patient the clinic will be a little more helpful.) So, I got back on the phone with the pediatrician's office and Kinley has an appointment on Wednesday. I am also still waiting on the Infant-Toddler program to call back to set up Kinley's initial evaluation so we can start seeing the OT about Kinley's feedings. I am trying really hard not to get too frustrated, but I just want what is best for Kinley right now and I feel like somehow Kinley has fallen out of the medical loop that she needs to be in. Kevin and I are doing the best that we can to try and problem solve, but sometimes I wonder if our emotions get in the way. That is why I have been trying so hard to get someone's unbiased medical opinion on what to do.

OK, it is now 2:05 AM on Tuesday and I am still up. Since we don't have the necessary equipment and monitors to let Kinley's feeding pump go all night and us be able to sleep while it is going, I am staying up to monitor the pump and Kinley myself. Hopefully the pediatrician will order the necessary equipment so that Kinley can be fed at night with her feeding pump and Kevin, Kinley and I can all get some sleep at night.

Since I am still up, here is the latest on Kinley's day:

Kinley was a little more fussy than normal today. She didn't want to sleep at all during the day. I don't know if her fussiness was from that lack of sleep or from not getting any methadone today. Either way, it is a good thing she was not throwing up today, because I don't know if I could handle a fussy baby and a baby throwing up all day.

That's right, I said Kinley did not throw up today!!! Well, for the most part that is. She did throw up a small amount early in the morning before we pulled out her NG tube and then again later in the day after we replaced her tube. We put her tube down around 10:00 PM and then gave her a bottle at 11:00 PM. We thought we would try one bottle feed with her tube down to see if having the tube out really helped today or if Kinley was just having a good day as far as bottles go. Shortly after Kinley started eating her bottle she threw up and out came the NG tube that we had just put down. So our plan didn't work perfectly because Kinley had to get the NG tube replaced again, which makes for two times today, but at least we know that Kinley's good eating today was likely because the NG tube was not in place. Kevin and I were very excited about the amount of milk Kinley took from her bottles today. We only had to supplement with 60ml during her night feeds to equal what she took in the past couple of days when she had been getting her milk from the bottle and the NG tube all day. Hopefully Kinley can continue to increase her oral feeds so we can eventually get rid of the NG altogether. One problem I do see with getting rid of the NG altogether is that Kinley is used to sleeping through the night while the pump is running milk into her stomach. I don't know if Kinley would be happy with having to wake up during the night to eat a bottle. I wish we could explain to her that it is better than having an NG tube, but I don't think she understands that yet.