MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Somewhere Over the Rainbow

Not a rosie picture - but we haven't lost hope

Thank you to everyone for all of your supportive comments over the last few days. There has not been much going on here. It is now my 10th day in the hospital. The baby has remained strong inside me since I've been here which gives us hope and makes us happy. The nurse case manager on the unit here talked to me yesterday. She wanted to make sure that my husband and I know that the doctors do not want us to have a "rosie" picture of what the outcome will be. No, we do not have a rosie picture of what the outcome will be. Although no one knows what the outcome will be, we know that it is most likely not going to be good. They have made that very clear to us. We do not have false hope. We do have faith though and we have not lost all hope. After a couple of days of feeling pretty down, we had a better day today. We met with the NICU doctor again (as my husband was not here on Monday when he came to talk to me). He is the most human of the doctors that we have seen here and has a very calming presence about him. We expressed to him that our worst fear right now is that the baby will be in a vegetative state. He said that he does not think that will be the case in this situation. I also told him about some comments that some of the doctors have made such as "this child will be your full time job for the rest of your life - requiring around the clock care". He replied that he thought it was presumptuous to make a comment like that at this point. It was really nice to hear him say that. We feel very confident that whatever the outcome here is, the doctors in the NICU will be very honest with us and supportive of us. That's about all for now. I'm officially 29 weeks today - hopefully this baby will get another 8 weeks or so in utero.

  • Thanks for the update honey.  It helps to see both sides of the coin!!  I'm praying and sending you out to the universe for some peace of heart for both of you.  

    xoxo

    ~B~

  • I can't even imagine how scared you must be!  I'm so sorry that you're dealing with all of these unexpected issues.  You're right that no mother or father should ever have to think about all your worst fears while you're pregnant or after your baby is born.  It sounds like you and your husband are being as strong as you can for each other.  I will keep you both and your baby in my thoughts for a positive outcome.

    I noticed in your last post that you were being seen at INOVA Fairfax.  Is that where you're doing bedrest?  That is where I delivered my son in 2005 by emergence c-section.  Luckily we didn't need the NICU, so I don't have any advice for you on that.

    Keep us posted and try to take care of yourself as much as you can!

    Megan.

  • Congrats on 29 weeks!!  I'm so sorry that the drs. haven't tried to be more supportive of your situation.  I know how that feels myself and I'm glad that the neo is able to offer a bit more support in the way of the baby.  I look forward to your updates and wish you the best.

    Tracy

  • Libby,  You and Bruno are in my prayers constantly.  I was on bed  rest with Jack from 25 wks until I delivered at 33 1/2.  He needed therapy for a year but thank God is thriving now.  Andrew was also 5 weeks early but w/ no distress.  It is NOTHING compared to what you guys are living through.  I don't know how much you know about my history but it amazes me on a daily basis what a source of strength faith can be.  My prayers are that  your faith see you through whatever is God's will with strength and love for each and for your son.  Love, Maureen (Devine)

  • Oh sweetie~

    Bedrest is not easy, much less so with such a grim prognosis for the baby.  I spent 11 weeks on bedrest with my second child.  Most of that was in the hospital, being told all the horrible things that would likely happen because of my low amniotic fluid levels.  I remember the weekly ultrasounds that always seemed to bring bad news and more concerns.   I remember one doctor coming in and basically telling us we should abort, that our girl had no real chance at any kind of life.

    I am so glad we stuck it out.  Lily was born early at 27 weeks.  She spent 2 months in the NICU.  And all of those grim predictions never came to pass.  Today, Lily is a happy, healthy, very normal 4-year-old.  It hasn't all been easy.  We've had issues here and there.  But she is a smart little girl, with a very bright future indeed.

    Hang in there.  I know it is tough to hold onto hope and faith when the doctors are so determined to give us bad news.  But, as the NICU doc said, they can't know for certain what the outcome will be.  You and you baby are in my thoughts and prayers.  I hope you have the chance to update soon.

    Hugs,

    Mary

  • Thank you so much Mary.  It's so wonderful to hear of a positivie outcome when given a grim outlook.  I'm so glad that things worked out so well with your little girl.

  • Libby, Bruno, & baby boy; Grma & I pray daily for you, & wish there was more we could do, but know are hearts are with you.

    Love, Aunt Beth & Grma Dinges

  • I just read your blog. . .You will be in my prayers.  I can't imagine going through all you are- hang in there.  You are a strong woman!  Keep faith and know the God's will will be done whatever His plan is.  There is a purpose and I have no doubt in that.  Please keep us updated.

    Hugs!

    Lori