Friday, October 17, 2008

So Many Emotions

Mom's Not Coming Home Until When?

I guess that's okay. Dad's fun too.

Megan and Drew are back in Iowa for her cousin's wedding. They get back on Sunday. In the meantime, Kayley and I have just been hanging out and having our ups and downs.

Saturday, October 11, 2008

More Pictures

If We Could Just Solve Her Eating Issues...

Well, the benefits of waiting this long to update the blog is that we have a lot of updates. The disadvantage is that I really don't remember where I left off. So, if I repeat some things, forgive me.

First of all, we officially found out that Kayley is not going to be supervised under the Arizona Early Intervention Program. She is simply doing to well. However, if we think at any time that Kayley would benefit from the program or if we see something wrong, we can contact them again to do another evaluation.

RSV (Respiratory Syncytial Virus) season is coming. That's the biggest reason that Kayley is pretty much confined to the house. RSV is a lung infection that we all can get. In adults, it isn't serious as it only gives us symtoms of the common cold. In newborns and preemies, it can be very dangerous and even fatal in some cases. Therefore, we are going to do as much as we can to make sure Kayley does not get this infection. That includes giving her the RSV shot called Synagis. Synagis does not prevent RSV but it does provide some protection against the effects of it. The shot is given monthly during RSV season and is very expensive. Luckily, Kayley's circumstances allowed our insurance company to approve the shot so our out of pocket cost is minimal. Thank God for insurance! Now we just hope that the shot doesn't need to do it's job.

In the last post, I told you that Kayley was 9 lbs 5 oz. Since then, Kayley had a weight check and a doctor apointment where we measured her weight. At the weight check a week and a half ago, Kayley was 9 lbs 12 oz. That was a perfect gain...1 oz per day for 7 days. Then yesterday at her doctor appointment, she weighed an even 10 lbs. That wasn't a great jump considering it had been about 9 days since her last weigh in, but the doctor was still very happy with it.

Kayley had another visit from the NICP developmental nurse this past Wednesday. Instead of trying to recall all that Megan told me, I'm going to paste in most of her email.

"Tracy from NICP just left. Kayley weighed 10 pounds, which is only up 4 ounces since last Wednesday. She is in the 90th percentile for her adjusted age for height and weight, but the bottom 3% for her gestational age. Height was 22 inches.

She said developmentally Kayley is where she should be. She said Kayley seems more alert than a 3 week old, but some other things she is closer to her adjusted age. For example, she didn't follow a colored ribbon, which babies don't start to do until 6 weeks old. She tried tummy time and Kayley had an absolute fit. She said that is from the reflux so we may need to do tummy time on a bed or something, but Kayley needs it. I told her that I notice Kalyey always turns her head to the right when she is in her infant seat and she gave us some stretches to do to make sure that doesn't turn into a problem.

I also told her about Kayley's eating issues and she thought it sounded like Kayley had pretty severe reflux. She said we need to make sure we are persistent with the pediatrician about treating it. She said that the neosure formula we mix in with the breast milk makes reflux worse because it is so heavy.

We also talked about the amount of milk Kalyey takes in and she said it should be around 22-24 ounces a day as a minimum. I told her yesterday (a very good day for Kayley) was 17.5 ounces. She seemed a little concerned, but then said she has been gaining weight so she isn't too worried yet."

So as you can see, Kayley is pretty much right on schedule. Again, the big obstacle we have is her eating. Most of the time it is a huge struggle to get her to take a decent amount. She has stopped crying through the feedings, but now either stops sucking or kicks and arches her back to get away from the bottle. And many times after we get some milk in her, she ends up spitting it back up. It has been very frustrating for all of us. It is an exhausting chore to get Kayley to eat. Sometimes an hour goes by before Kayley takes a satisfactory amount.

Needless to say, eating was our main concern heading into the doctor's office for Kayley's appointment yesterday. The good thing about the whole situation is that Kayley continues to gain weight. I definitely think Megan and I put a lot of pressure on ourselves to get Kayley to eat a certain amount. I think this stems a little bit from the doctor in the NICU wanting Kayley to take a certain amount per feeding before he'd let Kayley go home. In any case, it's still not right that feeding Kayley is such a chore. So after voicing our concerns to the doctor, she upped the amount of cereal we give to Kayley in her bottles. It use to be 1/2 a tsp per ounce. Now, we are giving Kayley 1 full tsp per ounce. I think we have to realize that Kayley is not going to take as much each time because of the amount of cereal we are now giving her. And so far, that has held true. It's a struggle now to get her to take 70 cc's when she use to take close to 80 cc's each time. Hopefully she continues to gain weight so that won't be an issue. Better yet, hopefully the extra cereal helps her feel better so she'll feel like taking more each time. I'm sure I'll let you know in the next post how that goes.

Another question we had was how long should each feeding session take and when should we stop trying to force more milk down her. In the NICU, we stopped after half an hour but we had the feeding tube as a backup. As I said above, some feedings see to take an hour or more. The doctor said she'd be all right with us just feeding Kayley as needed and as much as she'll take for a week or so. We can assess the situation after that to determine if it's working or not. So, we're going to try to stay around every 3 hours but we're also going to let Kayley dictate how much she takes. Hopefully she can get on her own schedule and run with it.

Kayley is still pooping pretty inconsistently. This past Tuesday, we had to give her another suppository. When she gets to that point, eating becomes so much tougher and as described above, we really can't afford to have it be tougher. The doctor would really like Kayley to start going more on her own. So, she told us to start giving Kayley 1 oz of prune juice a day. Maybe that will get the ol' pipes going.

The last point of business at the doctor's office was to get shots. Needless to say, Kayley wasn't too happy to get them. However, she got over it pretty quickly.

Drew, on the other hand, didn't know what was coming. He thought he was just along for the ride and to watch his sister get checked out. And, so did we. But, the office had the flu shots ready and said he could have one. So, out comes the needle and Drew got poked in the arm. He handled it pretty well. I think he was just too surprised to react too much. 20 seconds of crying was all there was.

Kayley was baptized this last weekend. As you can see from the pictures, we had some family in town for the occasion. My brother Matt and his wife Kim are Kayley's godparents. There aren't really many updates about this...just pictures.