All smiles without my NG tube

Kinley has been so much happier now that we have been taking her NG tube out during the day. Here are some pics that we took showing off her clean face and the first time she has been tube free. (Even if it is only for the days.)

I think Kinley was trying to laugh in the pic above. She was not so sure what to think about that.

Kinley was not smiling in the pics below because I think she knew she was going to the doctor's office. While Dr. S is a great pediatrician, he makes Kinley get on the scale naked and she does not like that. I had to take some pics of her with her cute outfit and matching hat though.

I am sure Kinley is thinking "Are you sure I have to go to the doctor again? I just got weighed a day or two ago."

Mommy and Daddy are Boring

I think Kinley finally figured out that her mommy and daddy are boring because a couple days ago she wanted to go for a walk with her friend Chase instead. I told her that would be fine, but that she had to let me and Chase's mommy go along with them. Kinley thought that would be ok because then she would have someone to push her stroller around and chauffeur her. Here are some pics from the walk. Notice the matching strollers...how cute!!

I think we might have our hands full with Kinley (like we didn't know that already). Look at her smiling at Chase.
OK, enough with the pics already. Lets go.

Infant-Toddler Evaluation

Today Kinley had her initial evaluation with the Infant-Toddler Services of Johnson County. A nurse and an occupational therapist stopped by our house to visit with our little girl. The purpose of the evaluation was to see how much, and what types of services Kinley will need. Kinley was very well behaved for her guests and thought she would show off a little. The nurse and OT decided that Kinley will qualify for OT just once or twice a month because, for the most part, she is doing all the things a "normal" 3 month old would do. The OT will work mainly on feeding Kinley, but Kinley is also a little behind with her sounds. By this time she should be making some cooing noises, but all she has done up to this point is cry. Overall though, the nurse and OT were very impressed with Kinley. Way to go Kinley!! Keep up the good work and we will be right there by your side cheering you on!

2nd Visit with Dr. S

Today Kinley had her second pediatricians visit since being discharged from Children's Mercy. It went really well. Kevin and I brought our computer to show Dr. S the log on how Kinley is doing with her bottles and NG feeds at night. We made this big spreadsheet that shows what time the feeding was supposed to begin, what the actual time was, how much she took initially before stopping for a burp, what the whole intake was for the feed, if-when-how much vomit there was, did we give any meds and if so when, if there were any wet or dirty diapers and any comments that we wanted to add. Dr. S said that he could tell we were "raised" in the NICU with Kinley. He sure was right. It has been kind of hard for us to adjust to "life on the outside" with Kinley. We were used to monitors telling us how Kinley is breathing, what her blood pressure is, what her heart rate is, etc. We also were used to the nurses measuring the contents in Kinley's stomach prior to feeding (her residuals), taking her temp every 4 hours and knowing exactly how much she was eating down to the ml...heck, they even weighed her diapers to know how much she was peeing! While it is nice not to have to worry about all that now, it is still difficult for us to adjust completely. Dr. S just glanced at our spreadsheet, but wasn't really too interested in the details. He was just concerned that Kinley is gaining weight appropriately, and she is, so he was happy. He said that we could continue the spreadsheet, but not to get too wrapped up in the numbers. He said some days will be better than others, but the main goal is steady weight gain. According to his scale today Kinley was 11 lbs and 9 oz, so it looks like she is continuing to gain weight. YEA!!! So, for now we will continue the bottles during the day without the NG tube in, and then do tube feeds at night replacing what Kinley was not able to eat during the day.

Persistence Pays Off

I received a call from Kinley's pediatrician's office this morning. They had called and talked with the dietitians and doctors at Children's Mercy and decided that Kinley could have an apnea monitor! An apnea monitor is a machine that will monitor Kinley's heart rate and respiratory status. We will hook Kinley up to the monitor during the night while her feeding pump is running. It is a pretty small machine and just has a strap that will go around Kinley's chest. It is very loud when it rings off though (sounds like a fire alarm), which is good since I have slept through a few alarms since Kinley has been home. Having the apnea monitor now means that we can do longer feeds at night through her NG tube and we can sleep while the feeding pump is on since Kinley will be monitored by the machine. Thank goodness because I don't know how much longer I could have lasted on 30 minutes of sleep per night.

I was really impressed that Kinley's pediatrician took the initiative to call Children's Mercy and get this set up so quickly. I thought we would have to wait until our appointment tomorrow, and then start the process of possibly getting a monitor. Apria, the company that handles Kinley's home equipment was also great and delivered the machine around 7:00 PM tonight.

Kinley has continued to do well with her bottle feeds now that Kevin and I have been taking her NG tube out during the day. Her reflux seems 100 times better and she has not thrown up at all today while the NG tube has been out!! She is continuing to increase her intake by bottle and even took a full bottle at one feeding today. She seems to be tolerating the increased tube feeds at night just as well. Way to go Kinley! She did throw up a little bit this morning around 7:00 AM, but not bad enough for her tube to come out. That was good since I try to give Kinley as many meds as possible through her NG tube in the morning before pulling it out for the day. As long as she has the tube in I see no reason to make her take yucky meds orally.

We will still see the pediatrician tomorrow since he wants to talk to us in person about Kinley's new feeding plan, so we will let you know how that goes tomorrow.

Now we can concentrate on getting Kinley set up with the OT from Infant-Toddler. Kinley still needs help to increase the amount of milk she takes from the bottle and she needs to start eating quicker so that she does not get so tired during feedings.

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.