Saturday, June 5, 2010

Dear Friends and Family:

I didn't realize that it had been so many days since my last blog update! Our days are just running together lately. We started the week off with some good news on Monday that they were working towards sending Emory home the first of next week. Our neonatologist said that he would have to meet with the cardiologist on Friday and if the feeding issue was the only thing left, they could send Emory home with the feeding tube. So, although we were excited to hear about improvement, we still didn't want to get our hopes up. And, although it is a simple thing to do for many, the thought of inserting a feeding tube into my child was very overwhelming!

Gremmy left Wednesday afternoon and boy was she a huge help while she was here! It made things so easy to just be able to walk out of the house for the hospital and leave the boys with her. While she was here, she used her "spare time" (ha,ha) to make a blanket for Emory. I'll post pics one day of all these things.

After her leaving, I went to the touch time at 3:00 and the nurse started going over discharge information with me and let me know we needed to start coming early for training on the feeding tube. Without going into all the details, on Wednesday we brought home with us the pump for the feeding tube and on Thursday, Claude inserted the feeding tube into Emory. Mind you, the discharge process for an infant from the NICU is a long one and involves several items to check off a list! This was just one of many things from the list. I was going to go up early today, but when I called ahead of time to make sure it was still ok, Emory's nurse told me that the neonatologist had taken the tube completely out and planned on leaving it out because of how good Emory was eating. I was so thrilled I was in tears because I knew that meant Emory was closer to coming home.

The main thing left that was a time sensitive issue was that I needed to get his prescriptions filled and take up to the NICU. I have to use a different pharmacy for his prescriptions due to them needing to be compounded and it was either get them done by tomorrow afternoon or wait till Monday. Needless to say, I wanted to get them filled as soon as possible.

So, when I went up to the hospital tonight for his 9:00 feeding, he ate his entire bottle without a tube. He passed his hearing test this afternoon with 100%. I dropped off his meds from the pharmacy with the nurse for them to verify the accuracy. He should be circumcised within the next 24 hours. I'll take the car seat up tomorrow for them to test him in it (he has to sit in it for 1.5 hours without having any breathing problems). They want to make sure that he doesn't lose any weight over the next 48 hours and that he still continues to eat good during that time as well. If those two things are good, we should be able to bring him home Sunday night or Monday morning.

The neonatologist has written orders that within two weeks after discharge, we will need to see our pediatrician, the cardiologist, the endocrenologist, and the geneticist.....all of which are a 30 - 45 minute drive from our house. The fun is just beginning =)! Emory will also get his first round of shots in two weeks. From what we understand, we will see the cardiologist every 1-2 weeks and they will watch his progress with his weight gain and his heart. All of that information will determine when he has his open heart surgery.

We will definitely keep the blog going with updates after he comes home and especially around the time of his surgery. We are so thankful that Claude was able to give blood and we both hope to give blood for Emory to have for after his surgery.

We'd also like to take this time to say a big "Thank You" to everyone who has helped with babysitting, sent cards in the mail, given gift cards to restaurants and other stores, brought meals or groceries by, mowed our lawn, etc. It has been a blessing beyond belief! For me to not have to think about what to cook for dinner has helped free us up to go to the hospital and that has been a blessing. Thank you doesn't seem to be enough but please know it is greatly appreciated!

One last thing.....I'm trying to add a caption or link for anyone interested to be able to subscribe to our blog so that when the blog is updated, they can receive an update through their email.  But, I'm slow at this computer thing sometimes.  So, for those of you out there with so much more knowledge than I have, please let me know if this appears on the blog post for tonight.  Or, please let me know how to go about doing this.  I would appreciate it.  I trust you all have a good weekend and I'll update again soon.




  1. We are thrilled that Emory is doing so well and may be coming home soon. We pray for him everyday and love him aleady.

    I'm clueless about the receiving email updates of your blog. I added your blog to "My Yahoo" page, but I don't know if it will notify me at my regular email address or not. Oh well, I check in on your blog regularly to look for updates. Love you. Debbie

  2. Twila,
    I am so glad Emory is home. I will keep him in my prayers. Hoping that you get some more sleep tonight. I love reading your blog & can't wait to see the pictures. Take care, Connie