Thursday, November 5, 2009

First Follow Up and NG Tube Update


Hope had her first follow-up appointment this week at the Clinic.  It started with a chest x-ray which was fine.  After that she had an echo...after she had her breakfast.  I tried to explain to the ultrasound technician that she had just finished eating and she might want to wait a few minutes before she started.  She decided to go ahead with the echo and of course Hope decided to throw up her breakfast on her.  I hated that Hope threw up, but I wish the tech had listened to me.  After the echo I decided to feed Hope another bottle and we were able to spend 15 minutes letting her digest the bottle before Dr. Prieto came to see us.  I loved hearing the words "her echo looks wonderful".  I had been dreading seeing her cardiologist because we always seem to get bad news when we see the doctor, but this time was great.  I felt like my little girl was showing everyone how strong she is and how much God is laying His hands on her!  We also met with the cardiology nurses and her incision looks fine and it doesn't look like she has/had an infection at all.  All in all, the appointments all went really good.  After our appointments I went to step-down and spent a few minutes with Erica and Kylan.  Kylan looks great and it looks like he will be going home this week.  I am so excited for Erica and Paul...they are great parents and Kylan will be so much happier at home.


The pictures I am posting today are special because you will notice that Hope does not have an NG tube.  She has been pulling it out a lot lately and we are going to test her today and see how she does without it.  She will need to take all of her food and medicine by mouth and we will be able to leave the NG tube out.  She has been doing so well lately that I am thinking she doesn't need it anymore...and I am sick of replacing it.  It isn't nearly as hard as I thought it would be, but I just don't like to know that I am the reason my little girl is crying.  She hates to have it put back and I think maybe she will realize that if she takes everything from the bottle, she won't need it anymore.  It will make all of us much happier.

Please keep us in your prayers as we know every day we have with Hope is a miracle.  We have cherished every minute and realize that life is so precious.  There are so many lessons we have learned on our journey and so many more we will learn.  We hope our journey shows God's miracles in life and helps everyone embrace life more fully and cherish everyone that crosses your path...every minute of every day.

8 comments:

  1. Congratulations on a great report! Keep up the good work Hope! Continued prayers for your family. She looks adorable with no NG, I know how special these pics are, hopefully she can keep it out. Thinking of you always.

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  2. Congratulations Paula! I am so glad to hear that Hope is doing so well. She is such a little miracle and she is absolutely beautiful! :)

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  3. Paula, I am so happy that your little girl is doing so good. She is so beautiful and truly a miracle! I will always continue to pray for her!

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  4. Hi guys!
    Wow, it is great to see little Miss Hope without a ng tube! She looks great! Being persistant pays off, who the heck wants a feeding tube anyway!

    Sounds like things are feeling a little more "normal" at home. I bet the boys are glad to have their Mom & Dad back full time, and everyone is enjoying sweet Hope! Keeping you guys in my prayers.

    Love you,
    Beth

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  5. Hope truely is a miracle! Congrats Paula!

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  6. I'm so glad the appointment went well!

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  7. So wonderful to see how much Hope has grown and changed in just a few weeks. Hope is a miracle and she is blessed. God is watching over her and now so is baby Sami. Hope now has her very own guardian angel watching over her. Take care and please keep sharing your photos, they make she smile! Take care always...

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  8. yay!!! hope she's eating well and you didn't have to put that darn tube back in. that's HUGE!!! just a few days ago i realized it was easier to give avery meds thru a nipple rather than sticking 5 suringes in her mouth. we usually do it right b/f a feeding so she really goes after it. that's one thing the NG tube was good for! i get my 5 suringes ready, stick the nipple in her mouth, then start emptying the suringes in the nipple. what meds is she on? heart meds avery has are captopril and aspirin, then lasix for fluid...the other 2 are for digestion (prevacid and reglan) and we're trying to wean her off those...so far so good. avery is eating really well...3 oz every 3 hrs...eating like a champ but not gaining weight yet. we've been home for 3+ wks and she's gained 6 oz. i think all her calories are still going towards healing. can you believe our little girls are almost 2 months old????? what heroes they are! AMAZING!!! if you can, shoot me an email so we can talk easier... annedeew@gmail.com !

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