Friday, 29 March 2013

Mixed Feelings

This morning the doctors agreed that, although Hope was miserable, she might as well be miserable at home for the day.  She needed to have bloodwork done before leaving and I needed to collect her medications and her feed.  Everything was set and ready to go, except the feed.  The nurse was a little half hearted about tracking it down.  After almost 3 hours of waiting, I was furiously pacing.  Finally another nurse checked the kitchen and found it had been brought up and simply sitting in the fridge.  On my way out, I passed our nurse sitting, chatting.  Thanks for looking for the feed and having any sense of urgency to get us out on a pass!  I wasn't very impressed and I usually LOVE our nurses.  Regardless, I was happy to be walking out as Hope needed a change of scenery to hopefully lift her spirits.

Hope threw up as we were putting her in the carseat to bring her home.  I weighed the blanket and found that she had only lost around 10 mls.  It sure looks like a lot more when you watch it happen.  Once home, Hope had 2 more minor spit ups and 1 more 10 ml vomit.  She was extremely irritable and very gassy.  She had quite the sound effects coming from her diaper throughout the day.

I feel horrible for her and want to ask them to stop, but I agree that we can't completely give up until we give her time to adjust.  Hope is throwing up smaller volumes and less frequently on this feed.  Normally if she is not tolerating a feed, she'll begin to vomit repeatedly until we have to stop the feed and start Pedialyte for fear of dehydration.  That is not the case this time.  I guess we just pray for joy in her tummy so she can start to have some quality of life again.

Today I wondered what I would do if Hope was home and I had her crying all day with Sadie running around and wanting my attention.  I could only picture myself needing a vacation before it even began. It's crazy how stressful it can be, yet I long to bring her home again tomorrow if they'll allow us to!

Hope had a great nap in the afternoon today.  She was sleeping on the bed as Shawn and I ate supper with Sadie and we all had a great time with no stress and no one missing at the hospital either.  In that moment, I longed for us to be like that all the time.  Around 8 pm Hope had that last throw up, a blow out diaper and nothing but crying coming from her.  I didn't feel so confident about her return home at that point and was slightly thankful she was going back to the hospital so I could regain my sanity.  I feel awful when I have those feelings, they happen though.

I'm not sure if they will push us to concentrate Hope's feeds tomorrow.  I'm going to fight for her to have more time as I think concentrating them will only make her more uncomfortable.  It's difficult to see her like this.  I just pray that this has a purpose.  If her body adjusts to this feed and it allows us to go home, these tears are worth it.  If we suffer watching Hope cry in misery and find out this feed hasn't worked, I will struggle to accept that this has been anything more than a waste of time.  Still praying for our miracle.


  1. It's so wonderful that you're able to be home, in spite of Hope's feeling issues. She must love the change of scenery! But I can appreciate, too , now hard it must be to watch her still struggle. Praying for wisdom for you as you advocate on Hope's behalf and try to figure out what is best for her.

  2. So glad you had that moment at dinner while she snoozed in bed... sorry the feeding continues to be such a challenge. Praying daily for you all. Praying for miracles. Thank you for journeying and blogging so honestly. it is refreshing, challenging and helps us pray for you with lots of specifics. praying for hope's feeding issues to be resolved SOON so she's comfortable and growing. praying.

  3. I was working at the Children's hospital and I just happened to see you leaving with Hope as my lunch break was ending. It filled my heart with joy to see that she would get to spend another day with her family at home. I know that the feeding challenges are hard on both you and Hope, but I pray that she will adjust to the feeds and that you will have the strength to continue as well. Good Friday is a day to reflect on what Jesus endured and that his love triumphed. I will continue to pray that your struggles will decrease and that love will help Hope.

  4. I pray for Hope every night and ask god to make Hope well again