Monday, October 26, 2009

Today has been a good day for little Teagan. He seems to be settling into his new room pretty good. Last night when we left it was a little scary for me and Bryson. We weren't used to seeing him lay in his room by himself. But today I was able to go down early this afternoon and he just seemed so calm and peaceful. It was nice, I was able to pick him up and put him down when ever I wanted, with out any help from the nurses. It just seemed like we were a lot more comfortable with each other, because it was just me and Teag's in the room. The whole time I was there it was amazing, they didn't have to come in the room once to adjust anything. His little heart is learning how to work without all the medications. Because of that it feels like we are getting closer to bringing him home:) They did a little study on his swallowing, and he was able to swallow the thick formula but not the thin like milk formula. So they are going to be working with him this week on swallowing. And hopefully this will help him learn to eat on his own, that would be a huge mile stone for our little guy. Thanks for all your thoughts and prayers!
Love,
Amanda

5 comments:

  1. We are so very glad that things are continuing to improve! Definitely worth the fight you all have endured! We're praying for you all and look forward to every milestone you pass!

    Ben and Melinda

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  2. What a miracle baby! He's doing so good. We are all so thankful. I can't even imagine going on this roller coaster your family has been on. I pray the ride continues to get better and you can bring him home soon. We love you guys!

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  3. Sweet pictures!! He is a miracle baby. Love and prayers continue for your sweet family! We all have learned to count our blessings as we watch you be so strong and upbeat. You have been through so much but are still amazing examples to us. Thanks for posting. We love you!

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  4. Swallow studies are tricky things for these little heart babies. It took Kylie a while to get it down. She had a NG for 6 months. Don't worry they all have little things to work on. I was just going to tell you when you hear the "H" word it happens fast like days. They won't even say it if it's not close. Just a little FYI I wished I would of know before we came home, I don't know if your pumping, but your insurance will most likely pay for a great pump, You just need to get a script from the doctors. Pick a pediatrician quick. I had the hardest time finding someone that felt comfortable taking Kylie, my boys ped didn't want to deal with the "heart" baby issues, I found a great one his name is Jason Church, he is in the Mountain veiw clinic in pleasent veiw. Kylie was is his 1st and only HLHS patient, but he is amazing. Great office and they really understand the germ thing. They don't let Kylie wait in the waiting room and will work her in on any day. Get a home health crew set up, we went with IHC home health because IHC was our insurance, Ask them to get the feeding pump ready and have them bring it to the hospital, Know how it works before you leave the parking lot, We had no idea how the pump worked when we got home and no one could help us for hours. Ask the cardiologist to write a script for a pulse oxomiter. Once your insurance pays so much to rent it, it becomes patient owned. Trust they are life savers, I took Kylie in a couple days a week just to check her O2. Wow this is a novel. Oh on the feeding pump, I have 2 boxes of bags if you get the same pump I would be more than happy to let you have, also tegaderm and duoderm. That stuff is really expensive and I don't see us needing it in the future. Kylie was allergic to it so I found really cute princess tape at walgreens, they have blue with cars for boys. It is micropore, it is less harsh on those cute little checks. Looks like he will be coming home soon, again if you need anything let me know hope you don't mind the novel ;)
    Chrissie

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  5. Dr. Church is also my pediatrician. Granted, my kids don't have the same problems, but he is a great doctor. And his PA was one of my husband's students at Weber State, and he's a great guy also. I've always felt totally comfortable with both of them. So glad he is doing so well!

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