Tuesday, 22 May 2012

Hoping it's nothing...

Last night was not the most pleasant for me.  Hope had her first 24 hours of Q3 feeds.  Although she only threw up once, she was uncomfortable and awake a lot in the night.  I started my day on less than 4 hours of sleep and felt cranky and annoyed before I had even eaten breakfast.  For the first time, I wished my child would stop crying, just weeks ago I longed to hear it and believed I would never get tired of it.

Hope is still on Q3 feeds and is doing so well.  Her stomach seems to be tolerating the full feeds and she's gaining weight.  This morning she weighed in at 7.2 pounds and the doctors were thrilled with her progress.  I got my final feeding tube training and was signed off to go home and be the new feeding tube expert in our home.  I inserted a new tube, learned how to gravity feed Hope at home and was given the ok to begin pushing her meds through her NG myself.  Tomorrow afternoon I'll have my training to give Hope her blood thinner injections.  It was supposed to happen today, but was postponed.  

In the afternoon, I tried breast feeding Hope again, now that her stomach seems to have settled and we're not as worried about her vomiting.  She was amazing!  Hope latched right away and took a fair amount from the breast.  The OT was pretty shocked and thought she would have a lot more trouble.  We're praying that she'll continue to excel at breast feeding and work her way up to taking her feeds that way and losing the tube.  We still have a long way to go, but every step counts!

This evening, Hope had a few episodes of her heart rate going over 200.  They aren't sure what this is about and have her on an ECG monitor again.  If it happens again, they'll know more with the monitor being on her.  They think that it could be nothing, just a reaction to some reflux or something simple like that.  If it is an irregular heart rhythm, they'll have to medicate her to correct it.  We shall wait and see and will keep you updated as we find out anything.  Please pray that it was an isolated incident and never happens again!

In other Hope news, her I.V. failed today.  They tried to insert another one but weren't successful.  They didn't believe me at first, when I told them the IV had failed, but a mother always knows her child!  The doctor decided that it wasn't worth poking her continually to get one in when she had already been on the antibiotic for over 5 weeks.  So....no more antibiotics for Hope and no more I.V.  She had some cultures taken to make sure that the infection is 100% gone and we'll get those results in 48 hours.

If everything with the heart rate clears up and nothing new surprises us, we're still on track to go home this weekend.  Please continue to pray, as we know that things with heart babies change quickly and we would really like to go home.  Tomorrow marks two months for us.  We moved to Edmonton on March 23rd and haven't lived in our home as a family of four since.  We know many families that have lived that way for much longer and we feel for them as we know how difficult each day/week/month truly is. Thanks for continuing on this journey with us.


  1. Andrea Reynolds23 May 2012 at 07:37

    Amy, your family is still constantly in our prayers. It's actually gotten to where if I forget to pray for Hope at lunch time with the kids, one of them will say, "Mommy, we need to pray for baby Hope!"
    Thanks for taking the time to update everyone even when you are so stressed and busy!

  2. Your little girl is amazing! But then again, so is her mommy:). After talking to your mom, it sounds like you are on track to come home if all the test come back clear. Look how much you have learned in two short months and an advocate star for your girl!
    We will count down the "sleeps" until you are altogether again. One chapter closes and a new one begins. Hope Haven is around the corner. Soon Amy,,,soon!

  3. Great to hear a positive update! I will keep praying for you guys! You are in my thoughts and prayers still!

  4. I haven't checked in for a while, how awesome to hear that things are progressing towards HOME. It is so great that Hope is breastfeeding. That is amazing for a heart baby! It was just way to hard for my son, which was extremely disappointing. So I am so happy for you and will pray that it continues to go well. I know how it is to long for home and just being a family under the same roof, without nurses checking in constantly. It's also scary to think about doing it on your own and you wonder if you really can care for your child. I just want to tell you that you CAN. I remember all of our focus being on getting Landon discharged and then on the drive home having this scary realization that I didn't know what his sats were and just being terrified that something would go wrong and we didn't have oxygen to just pop into his nostrils. Just know that those fears are normal and no one is more fit to care for your child then you. If you ever want to talk my email is maxwellmomma@gmail.com Will continue to keep your family in our prayers. I know it's silly, but I feel a bond with you since we were both in the hospital with our heart babies at the same time. It was comforting to me to read your blog and relate with you on such an emotional and spiritual level

    Keep on fighting momma!!