Our Family Meeting

Today we had a family meeting with Abby's doctors and nurses to talk about her care over the next few months.  It was decided that she will undergo surgery to have a feeding tube surgically placed into her stomach.  They felt that this is the best way to feed Abby at this point.  During her feeding trial last week, Abby failed.  She can't get the coordination to suck, swallow and breathe all at the same time, the poor little thing!  It is a result of her tracheomalacia.   This will definitely be different for us; depending on a machine to feed our baby.  We are scared and apprehensive but grateful.

On Thursday night, Abby will have a sleep test done to see if she is breathing efficiently and getting enough oxygen/air support.  She is still breathing on her own but she does have episodes that when she cries, she has a really tough time getting enough oxygen flow.  So the sleep test will give the doctors a better indication than the standard monitors that they have her on now.  The way they explained it, Abby may not be getting enough oxygen on a small subtle scale that doesn't come up on the monitors and it is enough to pose problems for her without us knowing or seeing it.  To me, Abby works real hard to breath on her own and I am hoping to get a better understanding with this sleep trial.  It will be after this sleep trial that they decide if she will need a tracheosostomy or not.

Regardless, I am scared out of my mind.  Abby's vocal chords are working properly. She just doesn't have the breath power to make sounds so when she does cry we can't hear her. I am scared that if she does come home without the trache, that she will not breathe and I wouldn't know it.  They told me she would come home with a monitor but those aren't fool proof!!  But they reassured us that they would not send her home unless they are certain that she is safe and that we are comfortable and ready for her to come home.

What a blessing though.  We are talking about when she does come home!!  How amazing is that!  She is such a little darling.  Her eyes are big and round and I love it when she is awake and she just looks at you with such love!!  It's almost as if she speaks to us with her eyes.  Like she's saying, I'm here momma, just love me!!  And oh how I do!!!

Roberto and I feel like first time parents!!  Abby's needs and care will be so much different than our first three.  We feel like we are starting from scratch.  Abby will not be bottle fed, at least not for the first few months and with a possible trache still, there is so much new learning to do!  We will need formal Infant CPR training.  Date nights are probably going to be put on hold for a bit until we are comfortable with her and her needs.  OMG!!!  But I did have fun today shopping for her!  I was able to nest a little bit.  I put it off, not knowing what to expect.  It was better for me to just take things slow, but she is doing fantastic, beating all odds, and since I am feeling much better, we went shopping for her.  Oh how I do love to shop!  It really is dangerous having a new Babies R Us store in my own town!  I told Roberto this and he threatened to take my credit card away!  LOL!  I said no way!!  Heehee.

Everyday we hear of a neighbor, or a niece of a friend, or a friend of a friend praying for her.  It amazes me really!  The power of prayer!  The amount of loved ones and friends that do pray for her.  It tickles my heart and makes me so happy!!  That combined with switching doctors at 37 weeks and going to a hospital where they listened to us and respected our wishes to get the best possible outcome for us.  Where would Abby be?  Seriously.  I don't dwell on it, but just think about it!!  Crazy.

We gave Abby life with the grace of GOD!!   I couldn't have done it without him.  "Trust".  "Let Go and Let God".  "One Day at a Time".  "Trust in Jesus".  These are my little prayers that I say to myself over and over again, especially when I get down.  I don't know where I would be without them.  I also pray for the graces of strength and courage to give Abby all of the love and support that she needs and deserves!!  We have a long road ahead of us, but I am so fortunate to have my faith and support of my family, friends and community.  Thank you!!