Feeling hopeful

Last night was another rough one. Her a central line was not wanting to worked and alarmed most of the night which equals no sleep for me. Since it is a temporary one they really only last around three weeks which is where we are at since it was placed. It’s been better today though so we are hoping it will hold out for a few more days. I really don’t want to have them replace it because of feedings keep going well we won’t need it.

We increased feedings again today and for the most part it went really well. We had to hold off her 3pm feeding an extra half hour but then 3:30 went fine and we were actually Abel to still do the 6:00 on time. I’m feeling hopeful for the first time that this may be over soon. I hesitate even typing that but I just can’t let fear overshadow the victory of today.

A lot of wet diapers today. Not much out of Charlie. He tends to want to wake up and work the most at night and cause trouble. That is the opposite of how it should be but Laila is the queen of opposite. The bag is falling off AGAIN. Charlie and Monti are just too close together. I wish I could just separate them. Charlie poops on Monti and Monti gets mucus on Charlie. Those two just won’t get along. Hoping the ostomy nurse has better ideas in Monday. Also hoping you are not eating dinner while reading this.

The other kids had a pretty good day too. They got breakfast at RMH and then Emma made a cake batter cheese ball and put it in little cups with butter cookies and wrote scripture verses on them. She gave them to families at RMH and then brought a big tray for the day and night nurses here at Riley. It was very sweet. She was hoping to make that for Hamstra family Easter which we missed today so she decided to bless people here with it instead :)

We of course rode the people mover and read a little of Wonder. We even ventured over to the neighboring hospital for lunch to check out their cafeteria. Please hold all your jealous comments, we know we lead a very glamorous life!

I just wanted to say how much I love all of your comments and texts. Even a smiley or heart emoji help me feel not forgotten here. Thanks for sticking with us through all of this.

I’m feeling hopeful this will be over soon. I’m scared even typing that but I will not let fear overshadow the victory of today.

I’d like to say Happy Easter to all of you! I hope even a tiny bit of this crazy journey of has given you a glimpse of the love, grace and mercy God has for each of us and every detail of our lives. These have been some of the darkest hours of my life, literally crying out to God. It is only from the foundation laid before in His precious Word filled with promises that I have been able to praise Him. In dark rooms wondering if I would have to hand him my baby I still, through Him, had the strength to say “I will still praise you Lord, even still.” To His name be the glory.

Romans 5:3-5 Not only this, but we also rejoice in sufferings, knowing that suffering produces endurance, and endurance, character, and character, hope. And hope does not disappoint, because the love of God has been poured out in our hearts through the Holy Spirit who was given to us.