Skip to main content

What a Day..

I can honestly say that between yesterday and today I hit a breaking point. Although we had the tube replaced this morning, Magdalena was continually upset because her feedings were off schedule. I hated to see her like this, not only because she was crying but because it makes it visibly hard for her to breathe and tired. I just want to see her comfortable and happy like how she was when we took the pictures of her in the little basket. Thankfully Loli and Papa came to the rescue today. Loli stopped on the way to her daughters' soccer games so that I could eat something and take a break, and once Papa came later on which allowed me to wash a few towels and pick up while he held her. The things that I did around the house were not urgent, but by doing them and having people watching Magdalena gave me a break. Even while I am writing this I am upstairs while Noah sits downstairs holding Magdalena. It is wonderful just to be given the time to breathe so that I can begin it again tomorrow.
We are beginning the continuous feeding again tonight. It is a machine that feeds Magdalena slowly throughout the night so that she can preserve her energy. Please pray that God will give us patience and endurance during this time of transition, and He will give Magdalena the needed rest so that she feels better. I have seen God do some amazing things since March when we found out about the syndrome, and He continues to truly amaze us with His continuous mercy, mercy far beyond our expectations.

Comments

  1. *deep breaths*

    dear Lord, thank you for Magdalena and for her parents and their supportive family.
    Please lift them up as they face new situations and learn to handle what is in front of them.

    Amen.

    ReplyDelete
  2. I will always treasure my special time with Magdalena. Thanks for letting me have my snuggle time with her!

    ReplyDelete
  3. Anonymous11:16 PM

    Julie, it will be OK! God is carrying you all through this, nothing will happen that is not 100% of Him. It is so clear to those of us watching and supporting you from afar. Well, for me anyway. You're doing a great job sweetie! Give that little angel a squeeze from me!
    Love you,
    Erin

    ReplyDelete
  4. I know you're hurting for her. We're praying for you!

    ReplyDelete
  5. Julie, First I am so proud of you for accepting help from others. You need it to refuel and recharge. Yes those things weren't pressing, but they were normal. Sometimes I just like to do normal things to remind me I am normal! Your road will not be easy, but I do believe you and Noah will be blessed beyond measure. I wish I was there to help, snuggle with her. I find some too nervous to be with Annabel. She is so beautiful and as she does grow, I promise things will become more normal and easier.

    ReplyDelete
  6. Praying for your precious girl, a happy tummy, easy breathing and smiles for mommy and daddy.

    Praying for lots of support and help, for energy, for being able to manage one hour at a time, restful sleep and that peace that passes all understanding. Praying.
    Love,
    Kathy

    ReplyDelete
  7. i too am praying for you. your doing such a beautiful job! your daughter is gorgeous and with the Almighty God in your home, all things are possible. i am happy for you that you have that support system. continued prayers for ya'll!

    ReplyDelete

Post a Comment

I love to hear from you!

Popular posts from this blog

Magdalena Grace Roberts

This morning Magdalena left this world to be with Jesus. There really isn't too much else I can say but to please pray for Julie and Noah. For now, they do not want any calls, emails or visits. I will you keep you updated on the arrangements.

Making the Decision to Not Make the Decision

I get the question, "Are you going to have any more kids?" asked often. Since finding out Magdalena's diagnosis it was always a tough question to answer. We had always envisioned ourselves with multiple children, but there was always the lingering thought of having to endure this difficult situation again. Although it is less than a one percent chance that we would have another child with T18, the percentage still exists. When pregnant, I said multiple times that I couldn't do this again and my mom constantly reminded me that it is not always that difficult. Being pregnant was physically uncomfortable, but I was referring to the constant emotional exhaustion. As Magdalena continued to do well, Noah and I weren't sure when to begin thinking about other children. Noah and I discussed that I would work really hard at losing my weight, but I was willing to be five pounds more than what I was originally. People poked fun at my not eating Magdalena's birthday cakes...