4 Months Old

Lots of updates for this post…

First and foremost, Casey is 4 months as of yesterday. And, the cutest 4 month old EVER!!!!

Casey’s PT has finally started up. The program is very short handed, so even though she qualified for 2 sessions a week they can only promise one. The PT then calls when she has openings to fit her in for a second visit. So far we have been pretty lucky, the PT has been able to get in a second visit both weeks, we’ll see if that’s normal or just lucky. She doesn’t do as much as we had hoped with Casey’s legs. We are comparing her the NICU PT that was wonderful so maybe we just had too high expectations. We are going to see how it goes over the next couple of weeks, but we may end up requesting a different PT if she doesn’t do the a little more.

So a week ago Wednesday Casey got a horrible case of diarrhea. The first day I tried not to think much of it, all babies get it. But after 2 and a half days I was really concerned so I called her GI clinic Friday morning. With Casey not getting much volume as is, I was really worried that she could be loosing weight, nutrients, or even become dehydrated. The GI clinic did not get back to me until nearly 5, then they had to page the on call to see what they suggest. The on call called me back fairly quickly and suggested we take Casey to the ER. We ended up at the ER for most of the night. They had to run a line (it took six tries) then they pumped her full of saline. They took blood, pee and stool to run test. The blood and urine tests came back clean so they assumed it was just a virus that we would have to let run its course. They sent us home and told us to just keep an eye on her and follow up with her pediatrician the following morning. The pediatrician had the stool test results and told us that a bacteria had formed from one of the meds Casey was on and that we should get back in touch with GI to see how we should go about fixing the meds. We had to get an antibiotic to kill the bacteria, she started on it Saturday. As of Sunday the diarrhea was finally over. She still has tummy cramps, but the worst is over.

Tuesday Casey had her 4 month appt. She got 2 more shots (one really must have hurt she cried really hard). She had gained a little, but not much. Wednesday Casey had a GI appt. They upped one of her meds since we won’t be putting her back on the one that made her sick. They also discussed changing the G tube to a J tube (it would empty into the bowl instead of the stomach to prevent reflux). They said they can do it without surgery and that we would be able to take her home that same day. We are still researching more info before we will go forward with anything. I am excited about the idea of finally getting rid of the reflux and being able to increase her volume. She is super cute this size, but she needs to grow.

Tuesday night Tim and I had our first respit date. We totally lucked out. We were able to get our favorite NICU nurse to be our respit nurse. She came by for a few hours Tuesday night and Tim and I went to dinner and a movie. It had been our first time out of the house together in months. It was really nice to have a date. We are going to try and get her to come by for a few hours every other week. Casey loves her, and we feel comfortable leaving with her here.

We have talked with neuro this week as well. In order to try and make her a little more comfortable we are starting to move forward with getting her botox for her legs. We really hope that it makes a big difference.

Casey has started to out grow some of her clothes and is starting to get into the 3-6 month stuff now. She has some really cute stuff in this new size. My office had an outfit made for her. All of the geeks that read this will appreciate it. The front reads ‘select * from CUTE’. I really thought it was fitting. She has a bunch of other really cute ones from family and friends.

All in all Casey is doing really good. She is holding her up more and more, and is slowly gaining some weight. Even though she had a sick spell since the last post, she is doing much better now. She is getting more and more vocal every day, and has started to open her hands a lot more and even grab at a few things. The thing she grabs most is her feeding cable (which makes Tim very nervous).

We hope everyone is doing well. We will post more when we have more info on the J tube.

10 pounds / 23 inches

Sorry it's been so long since we have posted - it's been pretty busy here. Casey has finally passed the 10 pound mark and looks so much different every week. She is still usually at 20ml/hour continuous feeding and she isn't gaining nearly as fast as her doctors want, but the surgeon and GI doctors have agreed to not do surgery just yet. With a lot of medicine changes and her stomach growing over time, they are hopeful that a stomach reshaping won't be needed to increase her intake. The surgeon is actually the one arguing that the result of this other procedure would be minimal compared to how hard it would be on Casey, so it was good to see the doctors compromising for what is best for her.

The billirubin protein count the doctors have been checking every week for Casey's liver finally fell below the desired number and they took her off her Ursodiol. It's so nice to have one less medication to deal with, and the way we see it, every milliliter of medicine she doesn't have to take is another ml of food her stomach can handle.

Casey has her regular physical therapies on Wednesday mornings once a week, and we will move to twice a week as soon as we get comfortable with a therapist. We have also talked to our favorite nurse from St. John's where Casey was born, and Kathleen will be coming out every week or two to watch Casey while we take a break together.

Daddy is taking some creative vacation time and is working 3 days a week (Mon-Wed-Fri) in August and September to help out some more at home. By October when he goes back, we should have a lot of the support services, therapies, and doctor's appointments in place and things will be much easier.