Today was the third day in a row that we've had Hope at home with us for a day pass. Shawn went to the hospital this morning and picked her up to bring her home. Sadie was really excited to see her sister and have her home for the day. It was definitely the best day we've had with Hope at home. She was a bit happier and we even managed to get a few smiles out of her. She continues to throw up, although they are spread out and the volumes are manageable.
Sending Hope back to the hospital at night is getting more difficult. At 9 pm, no one feels like leaving the house to do anything. Hope is usually settled with one of us on the couch and it feels wrong to shove her in a car seat and take her back to a place that is not her home. We are looking forward to having her at home, although we have been reminded of how much work that is over the last 3 days.
The doctors are now recommending that we introduce meat into Hope's diet. They want us to feed this to her orally. I have no idea if this is going to work, but we'll give it a shot tomorrow as it would give her the protein and calories she needs to stay on the low calorie food that she appears to be tolerating more. Hope is gagging quite often and clearly on the verge of vomiting. I imagine that as soon as I put something in her mouth, she's going to gag and vomit immediately. We'll give it a try and report back to the doctors. Her first taste of meat will be blended Easter turkey.
We were even brave enough to leave the house with Hope today! We took Hope to her Oma and Opa's house to hang out for the afternoon. She just watched everything that was happening and even had a nice nap on their couch. She'll hopefully be there tomorrow for Easter as well. Last year for Easter, Hope was just a newborn in the NICU at the Stollery. I would have never imagined the year we've had since then.
Day passes are giving us a taste of what it feels like to be together as a family once again. We are praying that this becomes our reality really soon and we're able to leave the hospital for good. The only thing holding us back is weight gain. If Hope could gain weight on the feed she's taking with the vomiting, we'd be good to go. She's going to need more calories in order to stay out of hospital. I can only pray that she shocks us all and loves to eat meat!
This Easter Bunny needs to go and hide some eggs!
I just read an article the other day about how medical professionals are now suggesting meat as a first food for babies, rather than the traditional cereal route. If Hope has an oral aversion to meat on a spoon, there is such a thing as an homemade meat-based formula (like you need more work!!). That might an option that is better tolerated. I will pray that she tolerates her Easter dinner like a champ!
ReplyDeleteSo happy for you, Shawn & Sadie that finally Hope is able to make day trips home and an actually visit out. This past year has been a ordeal many would not have been able to handle. I love the way you have left so much in your belief. God is answering your prayers Amy. I remember many times crying my eyes out for your family. You have weak moments but remember you are only human and God does understand this. Your strength in Our Lord & Saviour is refreshing & at down times for myself even with my own health, my grand daughters condition and a rare condition my niece was born with knowing all you & your family have been through has reminded me how lucky we really are. Thank you Amy , you are an awesome and loving mother, wife and now after reading your blogs I feel like I know you personally. You have inspired myself in so many ways of life and helped my growth in God. I know God works miracles as I had witnessed a huge one when I was in my teens. Now at 56 I still tell everyone no matter how bad things get they could be worse. I love and hate reading your blogs for my heart feels for your family as if it were my own. May God bless you & your family . May his miracles touch Hope. Hope you had a wonderful Easter day with all your family. Hugs to you all.
ReplyDeleteSo happy for you all that you've had 3 days of having Hope home during the day! When I think of Hope, I can't help but think of the fact that the same power that Christ from the dead is available to us today. Praying for resurrection power in Hope's little life.
ReplyDeleteJust a note on the feeding. When we introduced solids to Yana at 8 or 9 months, with the help of an OT, we discovered that she ate best when we fed her from the side of the spoon (not actually inserting the spoon into her mouth because that freaked her out and sometimes made her gag) AND when we brought the spoon to her mouth from below her, not coming toward her face. It's no surprise that kids who have been through surgeries and had NG tubes have oral aversions and fear of things in their faces! Praying for success and cheering you on!