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Old 08-18-2013, 08:51 AM   #11
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Re: UD #6 -My 2 wk old niece - heart surgery!

My mom called this morning. Harmony had what they thought was a seizure at 11 p.m. last night. The dr. said sometimes babies will have a seizure after having surgery. Dr. started her on anti-seizure medicine. During the night, she had a couple of episodes where her oxygen level dropped down to 30. It happened again this morning, so she had to have the breathing tube put in.

The dr. said it is possible the oxygen drop is a reaction to the medicine, but he would have expected it to be a more immediate reaction, so we aren't really sure at this point what caused it. They are doing a couple of EEGs - one to figure out if she had a seizure, and I'm not sure what the other is looking for.

(Benign Familial Infantile Seizures run in our family.)

ANOTHER UPDATE:
My sister just called me. She is really shaken up. Harmony is now sedated.

They already did the EEG this morning and found that she did NOT in fact have a seizure but she has a strong possibility for seizures, so she will stay on the anti-seizure medication. They will be doing an MRI sometime today because she has some abnormal brain activity.
They have to switch her from the breathing tube to a bag of oxygen so they can do the MRI, and they were attempting to do that while I was on the phone with her (and making sure her oxygen levels would stay high enough).

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Old 08-18-2013, 07:26 PM   #12
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Re: UD #11 SETBACK! :( My 2 wk old niece - heart surgery!

Praying for your family...
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Old 08-18-2013, 08:54 PM   #13
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Re: UD #11 SETBACK! :( My 2 wk old niece - heart surgery!

Update on Harmony:
Harmony was on 100% oxygen, but they have cut it down to 55% and she is taking some breaths on her own now. She was awake and alert and reaching towards her mom and dad earlier this evening. They weren't allowed to pick her up with everything that has happened today, but they touched on her and talked to her and leaned over so she could reach their faces and touch them.
The nurses gave her some breastmilk through a feeding tube at 7 p.m. and she has handled it fine thus far at least. So thankful for some good news!
Please keep praying!
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Old 08-19-2013, 09:01 AM   #14
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Re: UD #13, #11- SETBACK! :( My 2 wk old niece - heart surgery!

Great update!
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Old 08-19-2013, 01:53 PM   #15
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Re: UD #13, #11- SETBACK! :( My 2 wk old niece - heart surgery!

Harmony is doing much better! Thank you Lord!

Last night, Harmony was given some breastmilk through a feeding tube and her body handled it just fine. (She still had not been alert enough to try a bottle.)

The breathing tube has been removed. She is currently receiving a bath! She's staying more alert for longer periods of time, and she even cried today!

Harmony had been under a heat lamp to keep her body temperature where it should be and they were going to quit using it and see how she did. They are weaning her off things little by little and hoping to get her moved out of critical care and into a regular room soon.

The MRI, CT, and 24 hour EEG all came back clear. (I assume that means she just has the Benign Familial Infantile Seizures that run in our family.) She will be kept on anti-seizure medication for now - I'm not sure how long-term they will have her stay on it.

Please keep praying for Harmony and family, and praise God for the progress she is making.
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Old 08-23-2013, 07:29 AM   #16
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Re: GOOD UPDATE #15! #13, #11- SETBACK! :( My 2 wk old niece - heart surgery!

Harmony was discharged yesterday afternoon!!!!! Praise God!
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Old 08-23-2013, 08:08 AM   #17
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Originally Posted by smapple
Harmony was discharged yesterday afternoon!!!!! Praise God!
God is so good!!! I am so thankful to hear this news and will continue to pray for baby Harmony!
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Old 08-23-2013, 08:42 AM   #18
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Re: SHE'S HOME! #16 - #15! #13, #11- SETBACK! :( My 2 wk old niece - heart surgery

That is great!
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Old 08-23-2013, 08:48 AM   #19
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Re: SHE'S HOME! #16 - #15! #13, #11- SETBACK! :( My 2 wk old niece - heart surgery

holy cow, going from heart surgery to nearly not making it to home? amazing.
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Old 08-25-2013, 12:18 PM   #20
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Re: SHE'S HOME! #16 - #15! #13, #11- SETBACK! :( My 2 wk old niece - heart surgery

So glad your niece is doing well! My son had open heart surgery a couple months ago, it is a terrifying experience. Thinking of your sister and niece. If your sister is on facebook there is a terrific group of heart mama's on there, many of whom's children have Coartraction of the Aorta. Here is the link: https://www.facebook.com/groups/heartmamas/
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