Finally, an Update

I can't believe I have gone so long without an update. Sorry about that, but no news is good news as far as Kinley is concerned.

Kinley had a pretty good first Christmas. I am not sure she knew what all the commotion was about, but she did really well with it all for the most part. She went out to dinner (a first for Kinley) with Kevin and his family the night before Christmas Eve. I had to work, but was off Christmas Eve, Christmas Day and the day after Christmas.

Christmas Eve we went over to Kevin's parent's house to celebrate with family from out of town. Kinley did exceptionally well that day with her bottles. She ate a total of 825mls!! That is including a few bottles at Kevin's parent's house. Normally she does not eat very well away from home, but she gave Kevin and I an early Christmas present by eating really well and allowing us to stay and visit with family longer. It was a really nice day spent with family and friends.

Christmas Day we got up and headed back to Kevin's parent's house. I was kind of expecting a repeat of the day before, but should have known better. 825mls was a record for Kinley, so she was not all that hungry on Christmas Day. We tried to feed her at Kevin's parent's house again, but she threw up a good bit and was just a little fussier than her normal self. Who can blame her really, the 2 days prior were full of excitement for her and she was out of her normal routine. We went home to try and feed Kinley again and then headed to Kevin's aunt's house for Christmas lunch. We ended up missing lunch, but made it in time for gifts. Kinley was still a little fussy and we had to leave when it was time to feed her again. Still, it was nice to get out of the house with Kinley and spent some time with family, even though it was not as much time as we would have liked.

The day after Christmas my parents came over to our house to celebrate. My sister was sick, so we missed Aunt Mary, but Kinley enjoyed getting to sleep in a little and hanging out at home. She finally got a chance to open her gift from Santa too, which was fun. We had been so busy the day before that Kinley didn't have a chance to open her gifts from us or Santa. She got a toy box from Santa which ended up being great since she got a lot of cool toys from everyone else. She also got several very cute outfits, and a University of Minnesota onesie from Great Aunt Jody in Minnesota. Kinley was not allowed to wear her new onesie on New Year's Eve since Minnesota played KU in the Insight Bowl, but we might let her wear it now that the game is over and KU won!

Overall I think Kinley was a little overwhelmed with Christmas and obviously didn't understand what it was all about, but she did pretty well.

Here are a few pics of Kinley opening some of her gifts. There were way too many pics to post them all.

Like I said earlier, Kinley got a lot of cool new toys, but I don't know if any of them compare to the boxes that the toys came it.

Another Shot

Today Kinley had to get her second round of RSV shots. I hated bringing her out in the cold just to go get a shot, but knew it had to be done. Once again Kinley was a trooper and just cried for a moment during her shots. I feel like Kinley has had so many shots lately with her 6 month shots, first round of the flu and now her first and second round of RSV shots. In just a couple of weeks we have to go back for her flu booster and then in another couple of weeks it will be time for her third RSV shot. Hopefully with all these precautionary measures Kinley will stay healthy. Oh well, tis the season I guess.

The good thing about getting out of the house and to the doctor's office was that Kinley was weighed again. Kinley now weighs 16lbs and 4oz. That means that she is continuing to gain weight pretty well! This is especially great since we have still not used the NG tube in 17 days!!! (Of course we are counting.) Kinley is now taking about 720mls to 750mls a day from bottles. Her goal is still 840mls, which is why Kevin and I were so excited that she is still gaining weight at her current intake. Right now she is taking enough by bottle to maintain her hydration and from the looks of it still gain weight at an acceptable rate. Nicely done Kinley!!

Other than a few shots here and there, it looks like the next few weeks should be pretty low key. That should give us plenty of time to spend with friends and family for Kinley's first Christmas. We are really looking forward to that. Looking back at this year I can't believe all we have been through and to be at this point now is just amazing. Kinley continues to inspire Kevin and I and we hope to do the same for her. Merry Christmas!

What a Grinch!

Have You Donated Lately?

We have. Kevin's work had a blood drive yesterday, so Kevin, Kinley and I thought it was important to give back. Obviously Kinely was not able to donate, but I gave her my sticker because I knew she would have donated if she could have. Neither Kevin nor I had donated blood before, but after Kinley's stay at Children's Mercy we know how important it is now. If you remember, the reason Kinley came off of ECMO was because she was bleeding too much after her repair surgery. I can't remember exactly how many transfusions Kinley had the day she came off of ECMO, and frankly I don't want to, but it was that blood, among other things that saved her life. It wasn't just that one day either, Kinley needed blood on several other occasions while at Children's Mercy.

Everyone at the blood drive was really nice and helpful. They all said how cute Kinley was and when they heard her story and why we were donating blood they asked if they could take our picture. There is a chance Kinley might end up in a calendar promoting blood donation.

Here are a couple of pics that I took once we got home. If you look closely you can see the sticker I gave Kinley saying "First Time Donor".

Kinley's New Picture

A couple of weeks ago we took Kinley to...where else...Walgreens so that she could meet Santa. We warned the photographer that Kinley would probably start to cry right away, so the quicker he could take the picture the better. We didn't have to warn Santa because, well, he is Santa and he already knows what Kinley has been up to. Aside from crying whenever someone other than Kevin or I holds Kinley, she has been a really good girl this year! She even surprised us and didn't cry at all for her picture with Santa. She must have know that she should be extra good if she wanted a lot of presents this Christmas. I guess she learned that lesson early. Anyway, it was a good trip to meet Santa. Kinley was very well behaved and we didn't have to wait in line at all to see Santa, Kinley got the VIP treatment.

Somebody Is In The Christmas Spirit

The pictures did not turn out as well as I had hoped, but Kinley is wearing a Santa hat. The hat is way to big for her though, so it is kind of hard to tell.

A Very Good Visit

Today has been a really good day. Kinley had an appointment at the Special Care Clinic at Children's Mercy Hospital this morning. Kevin and I had been a little worried about this appointment. The Special Care Clinic is always really conservative in treating Kinley and we thought they might not be so happy with some of the changes we have made to Kinley's care in the last couple of weeks. In addition to that, Kinley does not really eat well at her appointments and we were worried that would put her behind for today and result in having to do an NG tube feed tonight. We actually thought about canceling our appointment today, but ended up going and now we are glad we did.

I guess I should start out by saying that in addition to not doing NG tube feeds at night for the past 6 days we also stopped all her meds a couple of weeks ago. We got the OK from her pediatrician about a month ago to stop her iron, but she was supposed to also be on her Prilosec and erythromycin still. We stopped the erythromycin because she was stooling well and we wanted to see how she did without the med. We stopped her Prilosec because she put up a fuss when we tried to give it to her orally. She used to get it through her NG and it wasn't a problem, but if you are not familiar with Prilosec, it tastes like salt water. I tried to mask it by adding some grape flavor, but it was still really nasty. Much to our surprise Kinley did really well off the Prilosec. Her oral intake started to increase and she actually threw up and spit up less. As a mom and pharmacist I have no explanation for this reaction, but if Kinley is happy and doing well then I am happy. As for the erythromycin, we will be starting that back up today. She was able to keep up with stooling as long as she was getting her full 800+mls per day, but now that she is getting closer to 700+mls, she is having a harder time keeping up. We have been giving an ounce of prune juice with one bottle the last couple of days, but I think we just need to start the erythromycin again.

The Special Care Clinic had only good things to say about Kinley and her progress. Kinley weighed 15lbs and 15oz today, so they were happy with her weight gain. She is also keeping up with her growth curve nicely and her oxygen saturation was 100% when they checked it. Everyone said how good (and chubby) she looked. They said that we could keep doing what we have been doing, no NG, no meds and all! Kinley was all smiles after hearing her good report. In fact, Kinley's nurse practitioner, dietitian and OT said her progress was like an early Christmas present.

Kinley cooperated by eating a pretty large bottle of 145mls just before we left for Children's Mercy, so we figured if we were back home in 3 hours we would not have to worry about feeding Kinley while we were out. Kinley's Special Care Clinic appointment was fairly quick and painless since they were happy with her progress, so that meant that we had time to stop by the NICU to visit everyone up there. Kinley was able to see several of the people that took care of her while she was on ECMO and nurse Katie. It was so good to see everyone again, but I am glad that it was on an outpatient basis.

We did find out that since Kinley now weighs 15lbs and 15oz her minimum intake to maintain hydration is now 720mls. With how far Kinley has come in just the last week or so I know she is up to the challenge!