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Heidi's Story.

Posted by on Jan. 14, 2013 at 1:29 PM
  • 11 Replies


I gave birth to a precious baby girl on March 8, 2012. Her father & I named her Heidi J'Lynn Mae Mullins. She was born via emergency c-section 6 weeks early & weighed 6lb 15 1/2oz & was 20in long. First off, let me just say that her father & I are extremely blessed to have her everyday & we love her with every stitch of our souls. I'm going to tell you my story & I welcome all comments & please feel free to share your story. 

My husband and I found out that we were pregnant the night before we were due to leave for Georgia. I was so excited but I was also terrified because my son was born sleeping August 6th, 2010, but that's another story. Anyways, we started telling our families immediately! We wanted to shout it from the mountain tops! WE WERE GOING TO BE PARENTS!

I was considered high risk due to the unfortunate fact that I am diabetic. However, my pregnancy seemed to be completely normal. I had dozens of ultrasounds and the baby was growing and progressing splendedly! I actually got my first ultrasound of her at 6wks 1day. I heard her heart beat 24 hours after it started! :) I had to go every week to the doctor and every week little Heidi's progress was fantastic!

Unfortunately, when I was about 32 weeks pregnant I went into the hospital due to high blood sugars. While I was admitted they did an ultrasound to check on the baby's development. The woman doing the ultrasound seemed a bit concerned which concerned me. She left the room and got one of the doctors who told me that my daughter had dilated ventricles in her brain. Of course, this alarmed my husband and I, as well as our family & friends but, the doctors told us to remain positive. That things could change between now and delivery. 

They then started scheduling me for ultrasounds and non-stress tests twice weekly. For about a week and a half everything was good. Her ventricles didn't further dilate and she was highly active. However, we started getting "non-responsive" NSTs. This, of course, concerned everyone including the doctors. On Thursday, March 8, 2012 I went in for yet another ultrasound and NST. This time my daughter's heartrate stayed at a constant 130. The doctor decided to do a contraction stress test, which if you don't know is where they give pitocin through an IV to induce contractions. They said if the baby does well that I could go home and carry her full-term. 

The nurse got my IV in and I asked when they were going to start inducing me, she went and got the doctor who decided that it would be best to just deliver the baby via c-section as soon as possible. This all occurred at around 11:30am-Noon and at 2:19pm she was here. She did cry and they were able to hold her up so I could see her but, then rushed her into a small room and intubated her because she was having difficulty breathing. I was able to see pictures of my beautiful baby while I was in recovery and after they took me to the Special Care Nursery so I could see her and touch her. 

On March 9th they transferred her Akron Children's Hospital's Neonatal Intensive Care Unit. They did all kinds of testing on her and eventually got the breathing machine off of her within four to five days. I got to hold her for the first time with the breathing machine when she was three days old. I was so happy to hold her but I was terrified that I was going to lose her. Within a week she was diagnosed with Hydrocephalus and Para-Ventricular Leukomalacia. 

She didn't take to feeds by bottle because she kept aspirating it into her lungs, so they decided to place a Mic-Key button for formula feeds. For the Hydrocephalus they placed a VAD or Ventricular Access Device to drain some of the fluid and blood off of her brain and toward the end of March/beginning of April they placed a permanent VP shunt on the right side of her brain. She came home with her daddy and I on May 4th. 

Since she has been home she has had numerous appointments with neurological doctors and her neurosurgeon (Who is absolutely wonderful!). She is developing well, she weighs about 15lbs now and 26 1/2in long. However, you can surely see that she will have some kind of delay. Probably more physical. She still has a hard time holding her head up and she's 10 months old now. There is no advice needed or anything. I just wanted to share my story.


by on Jan. 14, 2013 at 1:29 PM
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Replies (1-10):
by on Jan. 14, 2013 at 1:49 PM

Hi and welcome. Thanks for sharing

by on Jan. 14, 2013 at 2:21 PM

She's beautiful!  Welcome to the group!

by Bronze Member on Jan. 14, 2013 at 3:15 PM
Welcome to the group! My son also has periventricular leukomalasia. He is 5.5 now.
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by Amanda on Jan. 14, 2013 at 4:30 PM

Welcome to the group!

by on Jan. 14, 2013 at 5:00 PM
She is super cute! Welcome to the group
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by Bronze Member on Jan. 14, 2013 at 6:49 PM

welcome to the group thanks for sharing:)

by on Jan. 14, 2013 at 10:59 PM
Welcome to the group!

My 5 year old son has PVL.
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by on Jan. 14, 2013 at 11:05 PM

 Welcome to the group! She is a real cutie pie.

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

by Darby on Jan. 15, 2013 at 5:19 AM

Welcome !  Thanks for sharing:)

by on Jan. 15, 2013 at 5:51 AM

Welcome and thank you so much for sharing!! She is a precious little girl!! Heidi is beautiful!!!

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