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

Friday, December 12, 2008

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!

Thursday, December 11, 2008

We Are Rolling Now

Literally. Today Kinley proved that she can roll from her stomach to her back. Up until this point she was only able to roll from her back to her stomach and then she would get "stuck" on her stomach. It is so nice that she can now get off her stomach if she wants to, but it looks like we will have to do some baby proofing of our house now that she is somewhat mobile.

The other big news is that Kinley has been without her NG for the past 6 days!!! Her goal volume is around 840mls, but 700mls is the minimum required amount to maintain hydration. As long as Kinley hits the magic 700mls mark during the day we let her go without the NG tube feed at night. We have been taking it day by day, but like I said, it has been 6 days since we have had to do a tube feed. Kevin and I are really excited about the progress Kinley has made over the last week. (And I am sure Kinley enjoys a break from getting the NG tube replaced each night.) She went from eating 500mls a couple of weeks ago to at least 700mls a day lately. Yesterday she ate 750mls and today she had a record breaking bottle...180mls (6 oz)! I don't want to get ahead of myself and say the days of NG feeds are over, but for now we just enjoy each day that is NG free.

Kinley continues to play with spoon feeds and so far we have learned that she likes sweet potatoes the best. She does a lot better eating if you let her feed herself rather than trying to feed her. Apparently stubbornness and independence are characteristics of a CDH baby. Either that or she just takes after me. Either way, she has really had a productive week and Kevin and I could not be happier for her.

Sunday, December 7, 2008

Wednesday, December 3rd - 6 Month Check-up

Today Kinley had her 6 month check-up with Dr. S. Yes, we are a little behind getting this check-up, but we wanted to wait a few days so that it worked out with my schedule so that I could attend along with Kinley and Kevin.

Dr. S had only good things to say about Kinley's progress. She weighed 15 lbs 8 oz, so not a huge gain since we were in for her RSV shot, but she is staying on her growth curve, so that was good. Kinley is at the 50% for weight, 95% for length and 70% for head circumference. She is maintaining her curve nicely. Dr. S said that we should try and convince the Special Care Clinic at Children's Mercy to let us be a little more aggressive in treating Kinley like a more "normal" baby. He said as far as he is concerned we can start feeding Kinley any baby food that we choose, but to stay away from anything with honey, nuts or shellfish. That is what he tells everyone at first. He also asked if we had considered a trial off the NG tube. We told him that we did actually try it a few days ago and that it didn't really go all that well. He said not to get too concerned and he thought it would be OK to try again in the near future. We will see what Kinley does with her feedings. Overall he said Kinley is doing really well!!

Kinley did need to get 3 shots and an oral vaccine at the appointment. She took it all like a champ and was back to her old self by the time we got home. I did have to give her one dose of Tylenol once we got home, but other than that, Kinley did great. One of the shots that she got was the flu shot since she is now 6 months old. I feel much better now that Kinley has had her flu shot. We will try to get her booster flu shot in a month, but the nurse warned us that they may be out of the flu shot by then. Dr. S said he would try and set a dose aside for Kinley since she is probably the kid that needs the booster most out of all the kids he sees, but that even if she does not get the booster shot at least one shot is better than nothing at this point.

As long as everything continues to go well Kinley will not need another appointment until her 9 month follow-up. She will still go each month to get her RSV shot and hopefully her booster flu shot, but I don't really count those as actual appointments. Kinley has a Special Care Clinic appointment this Friday and I can only hope they will be as positive as Dr. S is with Kinley's progress.

Green Beans

Kinley had her first taste of "real" food a couple days ago. Up to this point she has had some rice cereal and applesauce, but her first "real" food was green beans. Kinley's OT recommended that we just let Kinley play while spoon feeding at first. We also try to let her feed herself with a little direction and encouragement. Spoon feeding is still just a developmental step for Kinley and we don't count anything that she eats towards her daily intake. Here are some pics of Kinley having fun eating her green beans.
What a cutie!

Is that a smile I see?
Two fistin' it