Happy Father's Day

I LOVE having Casey home. I can’t believe a full week has already passed. It stills seems kind of surreal.

Casey is still having a hard time adjusting to a normal day. There wasn’t really a day and night in the NICU so she is often wide awake at night then sleeping all day. We have been trying to keep her attention during the day so that she can sleep better at night. She is getting a little better.

On Sunday we decided to see how she would take to a little shopping trip. Being that is was Father’s Day, it only seemed right to take her to Daddy’s favorite place. We drove out to Fry’s. She was really good for the first half of the drive, but the vibrations started getting to her toward the end. Once we got her out of the car and walked around the store some she relaxed. She seemed to like walking around the store. The ride home was better, she slept most of the way.

Today Casey had a busy day. She and I got up early and took Daddy to work. Then we headed home for our morning nap (she is such a good napper). Later in the morning Casey had an appointment with the surgeon that was very please with how well she is doing on the tube. They ordered her button and we will plan on going back in about 4 weeks to get it put in. The button is a very small (nearly flush) tube entry. It will be much more convenient than the larger tube she has right now. They have to start with the larger ones in order to build up the canal.

This afternoon Casey had an appointment with her pediatrician. Casey has been really congested at night and I was worried. Doctor said it is nothing to worry about and gave me a few suggestions to try to see if I can help her.

We have a lot of appointments over the next few weeks/months. Nothing we can’t handle.

Anyway, all is going well now that we finally have our little angel home. She loves to sit on the couch with us, or cuddle with us in bed in the morning. She is so affectionate :)

Casey is finally home!!!!

After 7 weeks and 2 days we finally got to bring our little angel home. What a great day it has been. I picked Tim up at 3:PM then we went to pick her up. We were home shortly after 5:PM. It was so exciting to pull the monitors off of her. We put her in her first dress and she looked so pretty.

All of her doctors, nurses, therapists, etc came by to tell her good bye and wish her luck. They all said they are going to miss her. They have a NICU reunion every 2 years so she will get to catch up with everyone at the 2006 reunion. They took her picture (all dressed up) to post on the graduation wall. Everyone loved her little dress.

Now that we are home we are doing it all and it feels great. Casey has a bunch of follow ups with everyone over the next weeks and months, but nothing we can’t handle. She has her first appointment with her pediatrician tomorrow morning. We have talked with her pediatrician many times on the phone but have yet to meet her in person.

Over the next few days we will just get adjusted, then once we are settled in we will have to get into a schedule. We are so happy to finally have her home. I don’t think we have stopped smiling all day.

Tim’s mom happens to be in town visiting this week so she timed things pretty well. It’s nice to have some extra help while we get settled in. She is here until Thursday and with Tim back at work I am sure I will have many things for her to do while she is here.

I will post more updates and pictures as she gets to experience all of the things that have been waiting here for her. She will get to go on walks, swing, sit in her bouncy chair, sleep in her own crib, etc. So many new things to do.

Starting to plan for coming home!

Casey finally had her last IV removed today! It was her PICC line went all the way up her arm and into her chest - by far the one we wanted out the most and of course the last one to come out. Since she is getting all her nutrition through her g-tube and finished her round of antibiotics from her pneumonia 2 weeks ago, the doctors decided she didn't need the line anymore.

She is still on a number of other medications, but they can all be administered in liquid form through her g-tube.

Since Casey isn't on her IV food anymore, she has gotten a little jaundiced again. The doctors said this is a normal reaction to her liver adjusting and should subside in a few days.

With feedings going well and her vital signs being stable, the doctors are starting to talk about sending Casey home. A lot of details still have to happen, but it looks like it could be real soon. They had us come in Saturday for a continuous 12-hours where we moved Casey into a "transition room" and we took complete care of her, drawing and givings meds, suctioning, changing, feeding, etc. The nurses were closeby in case anything happened, but it went very smoothly. We also took CPR, and did training on the feeding pump that we will be using at home and what to do if her feeding tube gets pulled out.

It's going to be quite a task coordinating with all the doctors and home health care to setup our followup appointments and order equipment that we would need to care for Casey at home. We are going to need to do regular checkups with our pediatrician, neurology, physical/occupational therapy, social workers, and gastro. Thankfully the NICU is helping to get a lot of this setup for us.

Grandma Barnes is coming in town to see Casey again tomorrow. Casey has grown up so much in the last month - she is almost 9 pounds and moves around quite a bit more now.

As soon as we know more on when Casey is coming home we will make sure we post pictures and video of the homecoming!

6-7 Week Update

I have fallen a bit behind in my posts :( Let’s see, what all has happened since the last post….

On Friday (a week ago) they moved Casey to what is called the step down room. They have the main room for the sicker babies, but as babies become more stable they are moved to the step down room. When they told us they were moving her we were so happy. The new room is much quieter, not nearly as many alarms going off. Also, there is more space. We are able to pull up rocking chairs and hold her a lot.

The move was perfect timing too. They moved her early Friday morning, and my mom got to town just a few hours later. It was a really nice visit. My mom was so happy to see how much Casey has grown and developed since her last visit.

Casey has been doing really well on her feedings. They started moving up the volume very slowly, but since she was doing so well they sped up the increase a little. She hit her calorie goal yesterday. They have her on what is called a continuous feed. A continuous feed just means that she is basically always being fed. Right now she is getting 20cc every hour. Over the next few weeks they are talking about moving her towards a bolus feed. This will take time and we will have to work our way up to them. The goal will be to have 60cc over a 20-30 minute period then give her 2.5-3 hours off the feeds. We will probably start by giving her 20cc over 50 minutes, 10 minutes off until she adjusts, then slowly move the off period up from there.

Tim and I have been working with all of the nurses to learn as much as we can about her equipment and needs. In the step down room they encourage as much parent involvement as possible. We are giving her medicine through the tube, loading the feeds, cleaning the area, etc. Everyday we try and do a little more. I learn new words everyday too.

Casey’s legs are still very stiff. We had the head of ortho come by this week and take a look to see if there is anything at all that he could do. He did have some ideas, but said that with her stiffness and young age he really wanted to wait until she was at least a few months older. We have also been working with PT and OT as much as we can to help the tone and keep her as loose as we can.

Casey has been coughing lately. This sounds very simple, but it is a HUGE deal. She is able to cough up some of her secretions which means she needs less suctioning. Some of the coughs sound awful, but they are a really big step in the right direction.

Neuro came by this evening while we were up visiting. We talked with him some about what is next for Casey as far as tests and things go. We will be looking to do an MRI soon.

Casey is almost 9 pounds now, she is growing so fast. I can't believe she will be 7 weeks in just a few days.

I think that’s the main stuff for the past week. She has been doing really well. Everyday she just amazes us more and more. I will try and post more frequently :)

Extubated and Feeding

Today was a huge day. Casey finally got her ventilator out today. After her surgery they kept it in and decided to keep it in until she was able to eat. However, after surgery Casey had some issues that caused the doctors to postpone feeding her through the tube, which meant she had to keep the vent in longer than planned as well. They finally got her feeding through the g-tube yesterday evening, and they took her vent out this morning around 9:30. I am so happy, and I think she is too. She really hated the vent the past few days.

After getting her vent removed the doctors stopped sedating Casey. She is still swollen from surgery, but she is awake much more now and getting back to herself. I missed her like crazy this past week. We were not able to hold her until yesterday due to the vent as well. Now that she is awake more and we can hold her again we are all happier.

Casey’s PT & OT are going well. PT had some boots made for her to wear that help relax her feet and legs. OT did the same for her hands. Now that she is off the vent they will both work with her for oral stimulation as well. Hopefully they can help her work on her gag, suck and swallow.

The nurses said that Casey may be able to move to a crib soon. She will have a lot more space if they move her. She had lots of toys in her crib back at St John. If they move her to a crib again we can take back up her toys :) I think she misses them.

My mom is in town this weekend. We will get some new pictures and post more updates soon.