Saturday, April 17, 2010

The happenings the Past Week

This past week was busy. There was something going on almost every day. I am so grateful that my mom (the girls grandma) has been at our home with us to help out. I will miss her when she leaves on April 22. She has been helping me out when the girls have their doctors appointments. This past week both Haley and Rachel had an appointment. Haley went to her retina specialist. There has not been any changes to her right eye. Which to me is not good. I was really hoping that her right eye was looking better since Haley does respond to sunlight. We won't know what she sees until she gets older and is able to tell us. Her eye doctor thinks she won't see anything more than shadows. We are staying hopeful that she will be able to see more. Only time will tell.

Haley enjoying her swing



Rachel saw the pediatric ENT. The doctor looked at her vocal cords and saw that one of her vocal cords is still paralyzed. The doctor said it could take a year from when she had the PDA surgery for the vocal cord to start working again. If it doesn't start to work again its not the end of the world. Her other vocal cord can take over and she will be able to speak and eat. We think its already taking over since Rachel sounds better to us than in the past. Rachel also had her OCRG test which is a 4 hour test to see how she oxygenated while asleep and awake. She did ok when awake, but once asleep her oxygen sats went too low so she will continue on the oxygen. She will have this test done again in 4-6 weeks.

Rachel sleeping. She looks so peaceful.



Rachel had a very special visitor. Cathleen, one of her primary nurses at Woman's hospital came to visit her. It had been a little while since she has seen Rachel. She missed her so much. She loved seeing her and holding her.

Cathleen and Rachel

8 comments:

  1. I think that is so wonderful and such a blessing that the nurses in the NICU bonded with your girls. That is really sweet. I can only imagine how many babies pass through their hands in a year and it is something special for them to create a bond with a patient that extends beyond the hospital! :)

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  2. Amanda and Thomas, the girls look beautiful as usual. I think that as time goes by, Haley's eye will improve. Rachel will soon be out of the oxygen which will make her life easier. They are fighters and will continue to surprise everybody with their progress.
    Love,
    Claudia

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  3. I'm sorry Hayley's Retina appointment did not go better, but as you said, only time will tell! How wonderful though that the girls are home for good now, they seem to be thriving! Best of luck!

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  4. thank you for the update! as i've said many times before, All will be well. i am so grateful that our Heavenly Father knows and loves each one of us!

    hugs and loves to you all!
    Erma

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  5. That is disheartening about the retinal exam. Sadly, I know from family experience that once a retina is damaged, it is irreparable. Luckily, I have a mother in law who is blinded from diabetic retinopathy and can still see shadows and some color and shapes (she has to be very close up to see these colors and shapes) and she even can paint and still do her artwork. It is amazing what you can accomplish with hard work!

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  6. Hi there! I follow your blog but don't comment much but I felt the call to tell you that my daughter has a paralyzed vocal cord (she is 6) and had the PDA ligation as well. We did not even know it was paralyzed until last year and we only looked into it because her voice was hoarse compared to her twin sister. She has absolutely no problems with eating or talking to not to worry! We did a scope of hers last year and it was truly amazing to see her talking and how the cord that was not paralyzed basically took over for the paralyzed one! Very cool! I think your little girls are precious and I love reading your blog! Thank you for sharing your journey! My girls were born at 27 weeks gestation and even though they have had their share of troubles (one of them has mild CP) you would not know it today. Early intervention (and God of course) has helped them surpass SO many obstacles and we feel so blessed! They are both in kindergarten and doing very well! Thanks again!!

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  7. Hi, I've been following your blog since before the babies were born. Little did I know that following your journey was God's way of preparing me for the birth of my twins at 24 weeks and 5 day just 7 weeks ago. We delivered at Women's and spent 5 weeks there before we were transferred to Children's because my daughter was in need of the neuro department. I just wanted you to know how amazing it's been for me to be able to look at your journey and to see how God used you to prepare me for my own journey. So thank you! and may God continue to bless you and your beautiful family.

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