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

Saturday, August 16, 2008

Saturday, August 16th - GOING HOME!!!!!!

You would think that because Kinley slept from 11 pm to 8 am in the PCU room, Kevin and I would have gotten plenty of sleep. That is so not the case! Kevin and I were up almost all night trying to get her fed at the right times, fumbling with her tube feeding pump and just checking on her to make sure she was alright. At one point in the night I even got out the stethoscope and placed it by Kinley's nose and mouth to see if I could hear her breathing because I could not tell by looking at her. Needless to say we were pretty nervous, but everything was fine and Kinley did great.

Dr. W came by to check on us overnight and then again in the morning to say goodbye to Kinley. Dr. W was Kinley's doctor for all of her ECMO time and has been checking on Kinley ever since then. She is so good at her job and we will miss her once we go home.

All of Kinley's 11 pm and 2 am feedings were given by the NG tube like it normally is. Kinley has not been waking up during the night, and since she has the NG tube for now, we use it and let her sleep. We did try to wake her up for her 5 am bottle, but she was still so tired that she took about 2 ccs and was done. Needless to say, pretty much her whole 5 am feeding was through the NG as well. Kevin and I were feeling kind of bad about using the NG tube, but the doctors and nurses tell us it is alright for now. We just have to go off of Kinley's signals and do what is best for her right now. Kinley did a little better with her 8 am bottle and took 45ccs.

Delores, Kinley's NNP, came by around 10 am to check on Kinley. She said Kinley looked good and they would be by shortly to round and then discharge her. Kevin and I were really excited at this point. After 83 days in the NICU we were ready to take Kinley home.

It was getting close to Kinley's 11 am feeding, and no signs of rounds yet, so we decided to go ahead and get Kinley's bottle ready. Just before we were going to feed Kinley, Katie stopped by to say goodbye to Kinley. We asked Katie if she wanted to feed Kinley one more time and she said yes. Katie was able to get Kinley to take her entire bottle, the whole 95 ccs!! (If I haven't mentioned it before, they increased Kinley's feedings to 95 ccs every 3 hours.) I tried to take notes on how to feed Kinley from Katie and I got a few tips, but we may just have to come back to the hospital from time to time and have Katie feed Kinley.

Rounds happened around 1 pm for Kinley today. Delores and Dr. P looked at Kinley, asked Kevin and I if we had any questions and then they said that Kinley was going to be officially discharged!!! By the time the discharge order was put in the computer, and our nurse reviewed the discharge paperwork with us it was around 1:30 pm. Kevin and I were already packed and ready to go, so it didn't take long for us to leave after that. We said a few goodbyes to the staff and were out the door! We didn't forget Kinley's prescriptions either. I was a little worried about that.

Kinley was so cute when we were leaving the hospital. She was awake and wide-eyed, just looking around. That is until we actually took her outside. It was a fairly sunny day and Kinley didn't quite know how to handle that. She squinted a little and remained calm. In fact, Kinley remained calm for the entire trip home. She even fell asleep in her car seat shortly after getting on the hi-way.

Kevin, Kinley and I arrived home a little after 2 pm. There was a large welcome home sign and balloons for Kinley, which was really cute. Since Kinley is supposed to eat at 2 pm we were a little rushed and did not get to take all the pics that we wanted to, but we will try to get plenty once we get into a routine around here and have a little more time. Right now it seems that Kevin and I are always looking at the clock and checking Kinley's feeding and med schedule to make sure we stay on top of things. Kinley did get a chance to meet Kobi, our Boxer, before we fed her.

Kinley did great with her first bottle at home. Kevin fed her and she ate the full bottle. That is 2 in a row. Keep it up Kinley!! She did throw up about 10-20ccs, but she didn't get too fussy and her NG tube stayed in place, which was good. For the most part Kinley was pretty happy & awake once we got home. She tried out her play yard, saw her room and then it was time to feed her again. For her 5 pm bottle, Kinley was back to her old self and took half of the bottle. I think she was just worn out from the big day. After her 5 pm bottle Kinley fell asleep in her swing for a while. Once she woke up from her nap in her swing she was pretty fussy though. Kevin had to take Kinley upstairs and feed her the 8 pm bottle. Kinley didn't seem to think that she needed to eat again, but once she started sucking she took about half of the bottle again. After her 8 pm bottle she took another nap.

Kevin and I tried to get some things done around the house while Kinley was napping, but we were so tired that we both fell asleep. We woke up to get Kinley into bed and her 11 pm feeding started via her tube feeding pump. It is really nice to have the whole family together in one house though. We are really enjoying family time.

Thank you to everyone at Children's Mercy Hospital for taking such good care of Kinley while she was there. It is because of you that she is home now. We also wanted to thank all of our family and friends for helping us out during this difficult time. Thank you to everyone who has been praying for Kinley and cheering her on in her fight against CDH.

Friday, August 15, 2008

Friday, August 15th - Preparing for the big day

Kevin has been very busy lately. He spent most of last night and all of this morning preparing for Kinley to come home. (I would have loved to help, but I had to work instead.) Last night Kevin assembled the swing, bouncy chair, and baby monitor. This morning he was getting the car ready, put together the play yard and packed for our stay overnight with Kinley. He also went shopping for a video monitor for Kinley. We both agreed that it would be too hard to have Kinley in her room with only a sound monitor after being so used to having her hooked up to every monitor imaginable while she was in the hospital for so long. Instead of the video monitor, we decided on a co-sleeper for now. Kevin and I are getting a little anxious about leaving Kinley alone in her room so soon after being discharged. Give us a little time though and I am sure we will work things out. We are still new at this parenting thing even though she is almost 3 months old now.

Anita is here to take care of Kinley today. She informed us that as of last night Kinley weighs 11 lbs 1.4 ounces! She is getting so big. Kinley has been taking on average, about half of her bottle feedings and then getting the rest through her NG tube. It has been working out pretty good since Kinley is throwing up less and gaining weight like she is supposed to be. Hopefully we can get her to take a little more orally though. That would be really nice.

Kinley did exceptionally well with her 2 pm feeding today and took 83 ccs. Way to go, that is what I am talking about. Her 5 pm feeding was also pretty good since Kinley took 60 ccs from her bottle. After Kinley was finished with her 5 pm feeding session we made the big move to our PCU (parent care unit) room for the night.

We begin our night with Kinley by ordering dinner since Kinley was asleep. Kinley did not stay asleep for long and woke up early (7:30) for her 8 pm feeding. By the time Kevin and I decided that we should just go ahead and feed her a little early, Kinley had already worn herself out by crying. When we finally got her food ready, she only ate 55 ccs by bottle. Lets hope we get the feedings figured out and into some sort of routine.

Between Kinley's 8 pm feeding and her 11 pm feeding, Kevin and I gave Kinley a bath. It was also time for me to try and place my 2nd NG tube in Kinley. The second try did not go as well as the first, but I was still able to get the tube placed by myself. We must have really worn Kinley out with the move, bath and new NG tube because she slept from 11:30 pm to 8 am. The only reason she woke up then was because I was trying to wake her up.

Thursday, August 14, 2008

Thursday, August 14th - We will miss Katie

Katie and Lacey are back today to take care of Kinley. This will be Katie's last day with Kinley and Kinley will miss her very much, as will Kevin and I. Katie was Kinley's first primary nurse and has done a wonderful job taking care of her. Katie and Lacey let me know that Kinley had two vomits last night. One was only 10 ccs, but the other one was around 40 ccs. Lacey gave Kinley her 8:00 am bottle and she took 77 ccs. Way to go Lacey and Kinley, what a combination!

Around 9:30 Kinley had her car seat screening and it went pretty well. No major fits. Overall, she enjoyed her time in her car seat and passed the test.

Kinley's 11 am feeding was a doozie. Kinley took 55 ccs for me and then tired out, so she got the remaining amount of milk through her NG tube. Everything was fine, Kinley had a few good burps and was just relaxing on my shoulder. Dr. P stopped by to see how everything was going, and I said just fine. Katie gave Kinley her multivitamin with iron and almost immediately after her dose she vomited about 30 ccs. The part of the feeding that was such a doozie is that since I was holding Kinley against my chest with Kinley's head up on my shoulder the vomit went straight down my shirt. Since there was a good amount of throw up not only did it go down my shirt, but also down into my pants a little. Keep in mind that I was already dressed for work since I usually go straight from the hospital to work. Dr. P decided that maybe Kinley doesn't need the multivitamin with iron and is going to switch the order to just straight iron to see if that will help at all since it will be a smaller dose. Katie called Kevin as he was on his way to the hospital from work to tell him what had happened, so he was able to turn around and stop by home to pick up a change of clothes for me. Kevin saves the day!

We were scheduled to have a meeting with someone from Apria at 1 pm to drop off some of the supplies that we will need for Kinley's tube feedings at home. The meeting was also supposed to include instructions on how to use the equipment. Unfortunately, a combination of the Apria guy being double booked and the feeding fiasco that we had with Kinley and me forced the meeting back to 1:50 pm. I had to leave for work at 2 pm, so I only received a quick crash course on the equipment use. Kevin got the full instruction session, so lets hope he remembers everything and can teach me later.

After training with the Apria guy, Kevin returned to Kinley. Katie had already gotten Kinley to take 70 ccs of her 2 pm bottle and then I took over and got Kinley to take another 15 ccs for a total of 85 ccs. Good job Kinley.

As soon as the NG portion of Kinley's feed was over, a hearing technician came by to try and do another hearing screen on Kinley. We were told that they had been by sometime earlier and Kinley had passed the test for 1 ear, but then kept waking up for the second ear, so she still needs that ear checked. We were hoping that since she had just eaten she would sleep a little, but that was not the case. Kinley just stared at the hearing technician and stayed wide awake. They will try to catch her asleep sometime tomorrow and will also have a technician on call for whenever she does decide to sleep a little. They can also try to do her test Saturday if they need to. Hopefully we can get this taken care of before we leave, but we have been told that if we can't get Kinley to pass her hearing screen that is not something that will keep us in the hospital. Kinley will just have to come back as an outpatient to try the test again. Hopefully we can get it taken care of while we are here though.

Later on in the afternoon Kevin went out to our car with a car seat specialist who showed him how to install Kinley's car seat properly. Kevin also put in his 2nd NG tube and that went really well.

Kinley's 5 pm feeding started out great, but didn't finish as well. Kinley took 47 ccs at the start without stopping and then she just fell asleep after burping. Kevin could not get her to wake up after that, so she had the have the remaining given through her NG tube.

Kevin decided to call it an early night at the hospital to go home and try to get things ready for Kinley's homecoming. He was able to put her swing and her bouncer chair together as well as some other tasks around the house.

Wednesday, August 13, 2008

Wednesday, August 13th - Kevin's 1st NG

Katie and Lacey are back to take care of Kinley today, yea! Katie let us know right away that we did not miss rounds, but already Kinley had a new order for her total feed to be 95 ccs, instead of just 90 ccs.

Nancy, from OT, is here when we arrive. She just finished feeding Kinley her 8 am bottle and got her to take 71 ccs, but Kinley was really, really fussy for it.

During rounds today it was decided to switch Kinley from nystatin to diflucan for her thrush in case the thrush is in her throat, in addition to being on her tongue. Also, the diflucan is a little stronger than nystatin and Dr. P really wants it taken care of before we go home. Dr. P also wrote an order to move Kinley's methadone dose to 0.4 mg starting tomorrow per Kinley's methadone weaning schudule.

Kinley's 11:00 am feeding was bit interesting. While I was feeding her she decided to poop in her diaper, so we stopped to change her. We ended up changing her diaper and her outfit because she had overfilled her diaper. When we got her back down to feed her she was fussy and I decided to try burping her on my shoulder. She ended up throwing up about 10 ccs all over her new outfit and the blanket she was laying on. I changed her outfit again, and when doing so noticed that she had a wet diaper, so I changed that again also. When we finally sat down again to try feeding, Kinley burped all on her own, ate 65ccs, then started coughing a little and spit up a couple more ccs of milk. Kinley likes to do things the difficult way.

At 1:00 pm Kathy and I took the required infant CPR class. Now we know what to do if Kinley would choke or stop breathing. Lets hope we never have to use our newly gained knowledge. Right after the CPR class we met with the Andrea, the discharge planner. She went over how we will get the supplies that we need to take care of Kinley at home with her feeding tube. Andrea also scheduled 3 doctors's appointments for Kinley, so she went over the dates and times of those appointments with us. Kinley will have one appointment with her new pediatritian, one appointment with OT at Children's Mercy, and one appointment with the surgery department so that they can check to see how Kinley's is healing from all her surgeries. The OT appointment at Children's Mercy Hospital is just to tide us over until we can get set-up with an occupational therapist that will come out to our house to work with Kinley. Finally, we received the written prescriptions for Kinley so that Kathy can take them to work and get them filled. Kinley will be going home on prilosec, erythromycin, and iron. She will also go home on methadone, but we will just fill that at Children's Mercy's pharmacy before we leave. (Hopefully we won't forget to pick that up. I am sure we will have plenty of other things on our mind when we actually do get to leave.) Depending on how Kinley's thrush is looking in a couple of days, she might go home on diflucan as well.

Later on in the afternoon Andrea came by Kinley's bedstation to fit Kinley in her car seat. Since Kinley is already about 2 months and 3 weeks old, Andrea had to raise the straps on Kinley's car seat and the head rest. She told us that she never had to do that before. Way to go Kinley! She is such a big girl! Her actual car seat test will most likely be tomorrow.

For Kinley's 2 pm feeding she ate 70 ccs and got the rest through her NG tube.

Speaking of Kinley's NG tube, I replaced it for the first time today. It went pretty well and I was able to place it the first time. Kinley did not think it was so great though, I can't blame her for that.

Kinley's feeding at 5 pm does not go very well. She only took about 45 ccs because she was so fussy. I am guessing that she was simply tired and hopefully later feedings will go better.

Tuesday, August 12, 2008

Tuesday, August 12th - 1st Full Bottle Feed

Kinley took her first full bottle feed (90ccs) this morning at her 8:00 am feeding. Nicely done baby girl! Unfortunately, neither Kevin nor I was there for it. Nancy, from occupational therapy, was the one with the magic touch.

Kinley's methadone dose is now down to 0.44 mg once daily and Kinley is still on track to be off of the methadone by the 25th of this month.

During rounds today, Dr. P asked if we had decided on a day that we would like to take Kinley home. I inform Dr. P that we thought Saturday would be a good day and Dr. P does not have any problems with that. Kevin and I will need to stay overnight in one of the parent care unit rooms on Friday night and then, if all goes as planned, we will be discharged on Saturday afternoon!! We need to stay in a parent room with Kinley overnight so that the doctors and nurses know that we can take care of Kinley on our own, but also so that they can answer any questions that we might have before we go home. All parents of kids leaving the NICU have to stay in a parent room before they are discharged. Kevin and I have tried to be as active in Kinley's care as possible, but it is hard to do while she is in the hospital. There are a few other things that Kevin, Kinley and I have to do before we can be discharged, so a Saturday departure date seemed the most practical. Kinley will have to pass her hearing screen and car seat screen. Kevin and I both have to take an infant CPR class at Children's Mercy Hospital. I have to place one more NG tube in Kinley and Kevin still have to place 2 NG tubes. There is also a car seat lady who will come out to our car to make sure Kinley's car seat is installed properly. Oh, and we also need to get set up with home health to deliver the supplies we need for Kinley's tube feedings, the home health nurses, occupational therapy from home, follow up appointments with occupational therapy at the hospital, follow up appointments with the surgery department at the hospital and a visit to Kinley's new pediatrician. We have been wanting to go home for a long time now, you think we would have been a little more prepared, but it still seems so unreal that we are actually going to get to take Kinley home soon. We have been in the NICU for over two and a half months, but somehow going home still snuck up on us.

The rest of the day's feedings did not go as well as the 8 am feed, but when you start off taking 100% of the bottle, there is not much room for improvement. Kinley took 42ccs at her 11 am feeding and 45ccs at her 2 pm feeding. The remainder of her feedings was given through her NG tube. She did a little better at her 5 pm feeding and took 68ccs from the bottle. Again, the rest was given through the tube.

Shannon was back tonight to take care of Kinley. When Kevin was allowed back at 8 pm, Shannon had already given Kinley a bath, weighed her, and started to give her bottle. Kinley weighed 10 lbs 15 oz! Keep gaining that weight like a champ! Kevin was allowed to try and feed Kinley the rest of her 8 pm feeding and she ate 60 ccs. The rest was given through her tube while she slept.

Pics of Kinley's Room

Better late than never. Sorry, I promised these a while ago. Here are some pictures of Kinley's room, waiting for her at home.

Monday, August 11, 2008

Monday, August 11th - Going Home Soon!

Kinley's nurse today is Tiffany. She tells me that Kinley took between 40 and 45 ccs at both her 5:00 and 8:00 am bottle feedings.

Kinley felt like showing off at her 11:00 am feeding by taking 80 ccs from her bottle, but this was not a very accurate reading of her true appetite because she had a vitamin induced vomit in the middle of her bottle that freed up some room. Tiffany thought that Kinley threw up around 10 ccs. It is so hard to judge how much comes up because I thought that it looked like a bit more, maybe close to 20 ccs.

I missed rounds today, but there were not any changes. Dr. P stopped by a bit later though to talk with me and I informed her that Kathy and I had made the decision to bring Kinley home as soon as possible. I have been a bit concerned on bringing her home too early, but now that I have had more time to think about it and I would prefer to bring Kinley home with a feeding tube and not have to use it (if everything goes well) than go home without a tube and need it (if anything were to go wrong.) There are a few more things for Kathy and I need to learn (I still have to place an NG tube) before we can go home so it will probably be closer to a week before we leave, this coming weekend would the earliest. Dr. P tells me to talk with Kathy and pick a day that works best for us to take Kinley home.

Nancy, from occupational therapy, stopped by right before 2:00 pm to work with Kinley on some rolling and tummy time. Nancy also stuck around for Kinley's 2:00 pm bottle and together we were able to get Kinley to eat 76 legitimate ccs from her bottle. No vomiting in the middle of her bottle to make more room for food. The remaining 14 ccs were given through her NG tube over half an hour.

Kinley was able to keep everything down and while she napped we continued further into Harry Potter 2. At her 5:00 pm bottle feed, Kathy and I were able to get Kinley to take 64 ccs.

I (Kathy) stayed through shift change while Kevin went home to get some rest. Shannon was Kinley's night nurse and she had already started giving Kinley her 8 pm bottle before I was allowed back to the bedside. Shannon had been feeding Kinley for about 15 minutes before I arrived. Shannon informed me that Kinley had taken only 25ccs before getting really upset. Kinley was screaming when I arrived so I immediately tried to calm her down. This was not an easy task. Kinley finally settled down a little bit, but by that time her half hour feeding session was almost over. I was only able to get Kinley to take another 5ccs, so she had to have the remaining 60ccs through her NG. For the remainder of the night, Kiney was pretty fussy and would jump at every little noise. It took a while to calm her down, only to have her get startled again by another noise and start the calming down process again. I guess Kevin has the magic touch when it comes to feeding Kinley and getting her to rest after her feed. Hopefully Kinley was just cranky from being tired since she did not sleep much during the day today.

Sunday, August 10 - Good Eatin'

Kinley has nurse Katie back again today, but Katie has someone with her. It is another nurse. Katie is helping to train a new nurse to Children's Mercy NICU, Lacey. Well, she is not entirely new. Lacey did one of her internships here at Children's Mercy, but now she is an official employee. Katie and Lacey inform us that Kinley only ate 40 ccs from her 5:00 am bottle feeding. Also, Kinley's methadone dose is now down to 0.5 mg, based on the weaning schedule that the NICU pharmacist created.

Kinley's 8:00 am bottle feed goes much better. She took 70 ccs from her bottle. That is a personal best for Kinley. It helped that both Kathy and I were there to double team her. This may be more of an issue after Kinley is home because we will be working opposite schedules, but it is much easier to feed Kinley if you have two people. One to feed her and one to entertain her. If Kinley has someone keeping her attention while she eats then she does not fall asleep as quickly and therefore can eat more.

During Kinley's morning milk coma (her nap between feedings) we finished the first book of the Harry Potter series and began the second.

Kinley and I reading Harry Potter 2

Me trying to contain Kinley's excitement

A close up of me containing excitement

Kinley ate 60 ccs from the bottle at her 11:00 am feeding and another 65 ccs at her 2:00 pm feeding. The bottles we have been, and are currently, using only holds 60 ccs. (Please see pictures below.) So if Kinley wants more than 60 ccs we have to stop feeding her to re-fill the bottle. This tends to give Kinley time to fall asleep. Next time (at 5:00 pm) we will try using a bigger bottle that can hold all 90 ccs of her feed.

The larger bottle didn't seem to help. Kinley took 60 ccs from the bottle, but we only counted it as 55 because she spilled so much out the sides of her mouth. Katie and Lacey added the lost 5 ccs to Kinley's NG feed.

After shift change, Rachael (Kinley's night nurse) had us get started on a checklist of items/information that parents need to complete/have before taking their child home from Children Mercy's NICU. Most of the items and information on the list Kathy and I already knew about or how to do them, but it had never been recorded that we knew them or had done them. One item that we had not done on our own was give Kinley a real bath. So Rachael had us give Kinley a real bath. Kinley did not mind too much and once it was over it was time to eat. Kinley did a very good job of eating and staying awake considering we just gave her a bath. She took 58 ccs from her bottle. Hopefully this means she is building up her endurance so soon she can finish an entire 90 cc bottle before falling asleep.