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.