Friday, January 25, 2013

Update: Ainsley & Lorelei

Ainsley never had any problems while in the NICU.  She took a little while learning to nipple the bottle but was able to come home on Oct. 21, 2012 after 104 days/15 weeks in the NICU.  She is such a happy baby, always smiling and has a high pitched laugh.  Although she as a great baby while her sister was still in the NICU, I know she missed her because the first night they were together they both slept through the night, and have continued to do almost everyday since.  She is louder then Lorelei and loves to express how she feels.  She no longer cries when hungry but yells like she is mad.  She loves to "talk" to anyone that will pay attention to her.  Ainsley is currently at a 2-3mo level even though she is 6 mo. actual/3 mo. adjusted.  She is currently 14.5lb and 23in long.

After her surgery on Sept 3rd, Lorelei began to improve... a lot!  Very quickly she was able to step down from one oxygen machine to the next.  Very, very slowly her distended belly got smaller.  Healthy wise she was doing great.  She had a very hard time mastering her suck/swallow/breath skills. She was getting better all the time and the doctors kept changing her minimum requirements in order to help her reach them so she could go home.  But no matter how much she was require to eat, she would take the same percentage every time... it's like she knew.  The doctors couldn't find any reason for why she wasn't nippling, so they wanted to send her home with a G-tube.  A G-tube is a feeding tube surgically placed in the stomach.  Brian and I were completely against it.  Since there was no known physical reason for the lack of nippling we felt like we had to at least try to bring her home with a NG-tube.  An NG-tube is a feeding tube the goes into the nose (or mouth) and down into the stomach.  The doctors refused to send her home with the NG-tube because it is easily pulled out and can easily go into the lungs causing her to get sick or die.  Our older daughter, Rhiannon, came home with a NG-tube because she refused to eat anything at all, started the day her brother left the NICU.  Her first morning home she started nippling her entire bottle and never had a problem again.  So we were afraid of putting Lorelei through another surgery just for her to come home and start nippling just fine.. followed by another surgery to remove the G-tube.  We were fine with getting the G-tube if she continued to not nipple... because if it continued I would be more worried about why - what was wrong, than her getting the G-tube.    She would do most of her bottle fore her primary nurses and very little for any other nurses.  We tried explaining to the doctors that she is being picky about who is feeding her.. so if she came home where just me, her mother, was feeding her every time 24/7 she would continue to improve and not need a feeding tube.  Finally the doctors agreed to send her home with NO feeding tube at all!  They sent a home nurse to check on her and her weight.. and as long as she got check up regularly  consistently increase on her nippling, and continued to gain weight they would be happy.  But if these things didn't happen we would be getting the G-tube in place.  She came home on Nov. 22, 2012 (Thanksgiving Day) after 132 days/19 weeks in the NICU. It took a while and she would only eat for me but she was improving all the time and is now eating everything from anyone that feeds her.  At 6 mo. (3 mo. adjusted) she is taking 6-8oz per feeding (just like Ainsley), sleeping through the night, and is more than 13 lb and 22in.  She mother knows best!

Both girls have a lot of doctors appointments.  They get their eyes checked regularly and an Infant Teacher (similar to a physical therapist but without all the credentials  comes to the house every Tuesday.  Lorelei also sees a doctor for her hip dysplasia (getting it put on this Monday) and specialist for her thyroid condition.  Both girls are having an appointment to their flat heads soon.

We did a DNA test and the girls are identical!  All 26 DNA markers tested were a match.

More detailed information can be found on their Facebook page.

Lorelei right after surgery.
Lorelei's first time being held after 45 days.
Ainsley's first bottle.
One of their first times together.
Lorelei's car seat test: passed.
Ainsley's car seat test: passed.
L pulled out her NG-tube, & was so proud.
Nurse Penny getting Ainsley ready to go home.
Ainsley is finally home!
Lorelei is finally home!
They really are identical!
Happy Lorelei
Lorelei smiling at her reflection.
Ainsley smiling at her reflection.
Ainsley scared of Grandma's voice on speaker.

Pretty girls!

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