Special Needs

"Goldenleaves"

Hi, I'm 24 weeks pregnant with my second baby and both the doctor and cardiologist are pretty certain my lo has ds.( I opted out of the amnio for the known risks and maternity21 test since the results aren't the most accurate yet) He/she has many markers including the complete av canal defect. They told me the baby will go in nicu for about a  week after delivery. Is there anything I should do/prepare/know before delivery coming from a mama who's been through this? I greatly appreicate any advice/thoughts. TIA! (and btw, your dd is adorable!!!)

Re: "Goldenleaves"

  • Hello and thank you!!

     We actually had zero NICU time. She came home with us at 48 hours postpartum. It was a shock! We had a cardiology team, MFM team and NICU team in the OR for my c-section and everybody agreed that she was okay. I even got to hold her while they were stitching me up and had skin-to-skin! It was amazing! Best surprise ever. It's okay to hold out hope for that.

    What I would plan ahead for is

    1. Learn the signs of heart failure- rapid breathing, sweating during activity/feeds, lethargy, blue or grey skin, poor weight gain

    2. Prepare yourself for open heart surgery when the time comes. For me that involved reading every blog I could get my hands on and seeing as many pictures as possible so I wouldn't be surprised.

    3. ASK! Ask for what you want. Ask to hold your baby before being taken to NICU. They might not be able to accomodate you but they also might not know it's that important to you. ASK for the echo to be done in the recovery room or at your bedside. They may not have the technology, but my hospital did. Lauren literally never once left my side from delivery until discharge. ASK for doctor's rounds to be done at the bedside so you are 100% updated on your baby's condition.

     Congratulations and good luck! This is a "club" I never knew I wanted to be a part of, but now I wouldn't change it for the world.

    Lauren has Down syndrome and a complete AV canal heart defect
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    [url]WWW.MeetingLauren.blogspot.com[/url]
  • I have one more question- Did you do anything different at home with this baby than you did with your first?? Sleeping in particular?? I put my lo in a crib from the hospital but after hearing all the breathing issues, I'm a little freaked out and am wondering if I should get a bassinet in my room. What are your thoughts?
  • I had Lauren in a pack n play next to my bed. But she was a super loud breather! I was also just too nervous to sleep so I guess it didn't make a difference. She was admitted to the hospital at 3 weeks for heart failure and lack of weight gain. She stayed until she was 8 weeks old and had open heart surgery during her stay. I had to have her sleep in her own crib once she came home because we didn't have a good way to hook up her tube feeds anywhere but her crib. She was off the tube feeds by 10 weeks old. She has been in her own crib in her own room since 8 weeks old! But do whatever you are comfortable with!! Keep her in your room or in her own room. Whatever works for you will work for her!
    Lauren has Down syndrome and a complete AV canal heart defect
    Baby Birthday Ticker Ticker

    Baby Birthday Ticker Ticker

    image

    [url]WWW.MeetingLauren.blogspot.com[/url]
  • Pardon the interruption -- Goldenleaves has given me some good advice and I thought I'd pass my experience on.

    Be prepared for A LOT of information, a lot of waiting, and a lot of doctor's appointments.  Between the info and the pain meds, my head was spinning.  Make sure your SO has a clear head or someone to take notes.

    We had no idea that DD had ds and the AV Canal defect until she was born.  Docs saw some soft markers and did the echo just to check and found the AV, plus she was a sleepy baby and it took about 6 hours before she was ready to eat.  Put that all together and LO ended up in the NICU for 5 days.  She was put on a heart and sleep apnea monitor, under special lights for jaundice, and we had to go down to feed her every 3 hours.  (You don't HAVE to but we wanted to.)  However, NICU wants an EXACT measurement of what baby eats so if I BF, she didn't get credit for eating that much and we had to supliment with formula (which I hated).  They wanted a minimum of ml consumed and a record of all dirty diapers and types.  We probably would have gotten out earlier but we had to wait until the geneticist signed off for the bloodwork to be drawn for a chromosomal test to confirm ds and it was the Thanksgiving weekend.  

    LO is just shy of 4 weeks and is stable for now.  She's gained weight (which is basically what our docs told us they wanted), and her lungs are still clear.  Right now we're in a waiting game.  We have to watch for what Greenleaves was talking about the (panting, sweating, etc). Which is probably going to start happening in the next few weeks and we'll get back with the cardiologist to start her on Lasiks (sp?) to dry out her lungs.  Then if she tolerates the meds, we're looking at heart surgery at 4-6 months.  

    BTW - DD sleeps in a bassinet in our room...she's a loud breather too!  Makes FTP very nervous.   

  • Thank you both for all the info. That helps a ton!
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