3 Months

3 months old today! It seems like just yesterday that we had her and at the same time it seems like we have had her with us forever. I took Casey up to St John’s NICU today to visit with some of her nurses during her first month. There were many great nurses at both hospitals, but there was one in specific that Casey had at St John’s that she really bonded with. Casey recognized her right away and seemed to really enjoy the visit. I think the nurses enjoyed Casey’s visit too.

It has been REALLY hot in Santa Monica lately. With out an AC our apartment has been nearly unbearable. Tim and John went all over West LA yesterday shopping for window units that we would get to work in our unconventional windows. After many hours of searching they finally found one that would work. While Casey and I were visiting her nurses Tim and John installed the unit. It is so much nicer at home now. Casey was very happy to nap with a blanket this afternoon.

Casey has been practicing rolling over, holding her head up, making noises, etc a lot and she is doing great. She really is the most affectionate baby I have ever seen. She loves to cuddle and give hugs and Eskimo kisses. I have to say Casey hugs & kisses have become my favorite things. She is really doing great and continues to develop a little more every day.

Casey’s billi count continues to come down. We expect that this week, maybe next, should be her last on the billi meds. It will be nice to have one less medication to give her.

Casey’s GI and surgeon are talking to try and come up with a long term plan for her continued reflux issue. Her GI mentioned some changes to her medication to see if it would help, I am guessing we will start there. Hopefully we will get it resolved quickly. We have figured out that Casey’s anti vibration is not from secretions, but rather from reflux. If we stop her feeds in time for her to digest most of what is in her belly before putting her in the car or stroller she seems fine. She is only upset in the vibrations when she is feeding and has to fight back reflux. That’s actually a really good discovery. This means that once GI and her surgeon fix the reflux issue we should be able to get Casey out and about a lot easier and therefore more frequently than we do now.

PT is scheduled to come tomorrow morning. Finally!!!! It will be really nice to get her into a schedule with a real PT. Tim and I do what we can, but we only can do what we were shown. I am sure there is so much more out there that she can be doing.

I think that’s about it for now. We are charging the camera now to get some updated pics posted. As soon as we have some we will post them. She is getting so big.

Our Growing Girl...

Our little girl is getting bigger. Casey is 9 pounds 5 ounces now. She hit a period where she just maintained the same weight for weeks, but she is finally gaining again. We actually found some clothes she is starting to outgrow.

It has been a pretty busy few weeks for Casey. Her GI specialists had us start to advance her feeds from 20cc per hour to 25. We started to do this and after passing 24cc Casey started to spit up a bit. If she didn’t actually spit it up, it would get up into her throat and just sound awful. We ended up going back down and staying between 20 and 23 for a few days going down to 20 overnight. The next GI appointment she had (last week) I told them how much trouble she was having once we got up over 24. Even though she is gaining, they want her to be able to take more volume. They ordered a GI for last Friday. Just as we had expected as soon as the barium hit 25cc we saw it come up her throat and then she spit up all over the place. The GI doctor changed up some of her medicine to hopefully help to speed up her digestion a little bit so that we can hopefully get up to 25cc. The medicine change went into place on Friday as well, and we were hoping to see a change right away so we could go back up on volume. However we did hit a bit of a snag. The barium really clogged Casey up so instead of maxing out at 25cc we could barely put her on 20 since she was having such a hard time getting things passed. Poor little baby, she had such a tummy ache this week. Finally today things are starting to get back to normal. Maybe if they continue to progress we can start adding volume again over the weekend.

On Tuesday Casey had a few doctor appointments. The first one was with her surgeon who put in her button. It is really great. We don’t have to tape up a bolster on her belly for the temp tube anymore. The button is much smaller and easy to maintain. It hurt her a little to take out the temp tube so they told me to hold off on feeds for a little while. By mid afternoon she seemed to be doing well, and she was getting really hungry so I started up the feeds and everything went great.

After her button we went to the lab for her to get her bili rechecked. She is such a good girl. They take blood from her arm now instead of her foot (thank goodness) and she cries some, but she does so well. He count is continuing to go down, so hopefully she will able to stop the bili medicine in the next few weeks.

After labs Casey and I headed up to her NICU follow up. Luckily everything is in the same building. The NICU follow up ended up going for multiple hours. She had some OT/PT, some developmental tests, a general physical check, and lots of questions about everything that she has been up to since she came home. In the end the doctors are very pleased with her progress.

Today the regional center finally came by. The regional center is setting us up with home visits with OT/PT. I have been calling them daily since getting Casey home, and they finally came out. Now I have a few more assessment type things that they will be doing, but if all goes as planned we could have OT/PT out at the house as early as the week after next.

In addition to doctor appointments Casey has been getting out more. I take her with me to the drug store on the corner every now and then just to get her out of the house. Tim and I took her down to the beach on the 4th to watch fire works. She was not interested at all, she just wanted to go home and sleep. Last weekend we took her to the promenade to get some shorts for Tim and grab a bite to eat. She was having a really bad tummy ache though, so we ended up getting dinner to go.

Well, that’s about it for now. I hope everyone is doing well.

Latest Update

(check out those lashes...)

It has been a while since our last post, no good excuses, we just haven’t done one. Anyway, what’s been going on in Casey Land…

Casey is getting stronger every day. She has started rolling herself over (not completely but from side to side). She is holding her head up some. She is awake a lot more often than she was before. And she is starting to gain a little weight.

I take her to a GI clinic every week (if I don’t take her in I at least call in the weight from her pediatrician). At the clinic they are working with Casey and I to get her more food. She is still on continuous feeds right now. When we took her home she was on 20cc/hr 24x7. Last week they told me to move her up to 25cc/hr 24x7. I did this over the course of 3 days, but after we passed 23cc Casey started to spit up some. Tim and I put her back to 20cc and I called GI. We decided to be a little less aggressive and take her up 1 cc every 24 hours instead. She is on 22cc now. She gained a few ounces on the new volume. Once she is able to maintain 25cc I am sure she will gain even more. After we get her to the calorie & volume goal we can start working on moving towards bolus feeds (larger amounts then off the feed for hours in between). I am not sure when that will start, we just have to take things slow so Casey can handle them.

Casey had a neuro appointment and the doctor took her off the phenol (seizure medicine). One less medicine to give her every day is nice. She is still a bit yellow so the bilirubin medicine is still being given. Her count is coming down though, so she can get off of this medicine soon.

Casey still loves to hang out on her wedge on the sofa or in our bed. She is just so cute. If you lay next to her she will roll into you to snuggle. Such a sweet baby. She likes Eskimo kisses too. I will give her kisses then when I stop she pushes her nose out for more.

We started having official nap time this week too. Since she is awake so much now we need to be sure she has some structure to her day. I have her napping in her room and she seems to like her crib.

We are about to head out to buy some more wedges. I will try to post more soon.