One Long Update

Wow...I have so much to say since the last update and am a little frustrated I have let it go this long. I'll start from the beginning. Two Saturdays ago Jonathin's mom and sister, Julea, held a baby shower for Luke. It was nice to finally meet some one those that had been keeping up with Luke over the past 4 months. Luke received a lot of great gifts. All together it was a good day.

That following Monday Luke had visit from his home nurse. I have learned that is our security blanket for Luke's weight. I think with my half finished schooling I could know more than she does. Also it helps that I lived in the NICU for 98 days. Well Luke was up to 7 pounds and 14oz! So close to 8 pounds.  That night Luke and I packed up and headed for Indy for a couple days of hotel isolation. Jonathin couldn't make this trip due to work. So my dad was kind enough to let us hitch a ride with him. I can't say how lucky we are that his job is based out of Indy.

On Tuesday Luke had an appointment with his pulmonary specialist. She measured him at 19 1/4 inches....so we have grown over an inch in a month. Once we were in the room she turned down Luke's oxygen to .5 liters and continued with his exam. Once she was done listening to his lungs and monitoring him she placed a pesky pulse ox on his foot. He passed with flying colors. He was still at 100%! So now we are turned down to .5 liters on oxygen. I can't believe how far we have come when he was on the ventilator. Here we joked he was going to prom with the vent and now we have this tiny tank. Don't get me wrong the tank is a pain to travel, but it sure is better than a ventilator. After his exam, Luke and I were left with the rest of the day at the hotel. We mostly spent it watching television and napping. It was kind of nice though. Usually once Luke is sleeping I am left to clean up the house. This time I was able to nap along with him. It was a bonding experience I would say.

Wednesday was a busy day for our little man and you could tell it got to him also. I have vowed to never go alone again to Riley for the day. First we saw speech therapist. I know what you are thinking..."why speech?" Well she is monitor for his bottle feedings. I had to be honest with her and let her know we had stopped tube feeding a week or so after coming home. Luke just didn't seem to tolerate it as well as he had in the hospital. What can I say, he loved his bottle. Of course once we arrived he didn't want to perform. However, she wanted to try a swallow test to monitor if he aspirated on this formula. To cut to the chase, he does a tiny bit when he begins to get tired. To help we are now to add cereal to his formula. He isn't the biggest fan as of right now. We also had an eye exam while we were there. Luke's eyes have graduated. They are all the way to stage 3 and we don't have to go back till February. They will then check him for glasses at this visit. I wouldn't put it past him, due to everyone around him wears glasses. It was a very long day for Luke and I. He was extra fussy and his monitor kept going off. The patches are worthless to say the least. That reminds me though, he can take the monitor off during the day. He only has to wear it when we aren't right with him, when he is sleeping, and when we are in the car....yahoo! Luke seemed to be happy to be home that night. The next day we just hung out and tried to get back in our swing of things.

On Friday the home nurse came for the last time. That is right, we have graduated home care. However, Luke did lose 4 oz since Monday. I think it was due to the changes that took place this week. He wasn't a great eater in Indy. Still they graduated us!

The other big topic of that last week was RSV. Here is a great page that I got from a blog I follow. RSV INFORMATION! Our pulmonary team have placed us on quarintine. From this point forward Luke won't be leaving the house expect for doctor appointments. We will have to limit visitors also. We just ask that through our first winter please respect or wishes.  We ask that if you are feeling yucky or have been around someone that is sick that you do not visit. Also please understand our thoughts on the issue. We are very aware of Luke's lung issues and wish to not to relive the ICU experience. Thank you in advance. This will be a very different lifestyle to Jonathin and I due to the fact that we are used to going out to eat a lot. I guess it is time to brush off the little cooking skills that I have. I will dive into this issue more again soon....maybe.

Okay now lets get to the big news from today. Luke had his important hearing screening this morning. This has weighed heavy on us since he didn't pass his first screening right before we left Riley. He has been seen by First Steps earlier last week and they said he wasn't startling like he should be. Also we had noticed that he didn't really notice the dogs barking. Well our suspicions were correct. After 3 long hours and 3 tests it was confirmed that Luke has hearing loss. Not nearly as much as I worried about originally. Luke has mild to moderate hearing loss. He can hear bass, but can not hear the high pitch sounds. At first I cried, but I am thankful it isn't worse. Luke will be seeing another doctor next week, then we will start the process to get hearing aids. They hope to have them on by 6 months of age. They tell us he will not have any speech problems if we have them by then. We are now to speak to him within 3 feet of him so he can get as clear of sounds as possible. We had reading time today and it was so nice to have the three of us together for that. I don't say it enough, but when Jonathin is home, things seem less crazy. So please keep Luke in your prayers as we move towards this new adventure. Hopefully it will all work out for the best. Jonathin had to make sure the hearing aids won't prevent Luke's Notre Dame football career. And after this past weekend, they need all the help they can get.

Just one quick thing after this long post. I have become so obsessed with other preemie parent's blogs. I can't believe it has taken this long to read them. They make everything a little easier. I hope, hope, hope to finally get on a regular schedule again. Also they have me interested in things to keep RSV season a little more bearable. They also show me that I can blog about myself and what we as a family are doing. I love saying that...family. Slowly the feeling is setting in, 4 months later.

Jordan

Look at those eyes.

Sorry it is sideways. Luke's hearing should be in the far left sections and it is in the 6th and 7th section to the right. At least he isn't all the way to the right. That was our original worry.

Finally taking notice of all the bounce has to offer.