After five days of the most expensive vacation we have ever had (haha), we are home. While it is a relief because we aren’t in a hospital anymore, it is also stressful because now we are on our own with our sick baby.
The home health nurse met with us at home from 9-10:30pm to teach us how to feed her at home. Honestly, I am having a hard time with this whole tube feeding thing. Yes, it allows her to receive nourishment safely, but it is not fun, it is complicated, and I am not sure how I will manage on my own once my parents leave. I know that I am not the first mom who must figure it out, but I feel so intimidated. It also grieves me that we had to suddenly stop breastfeeding and that she may never get to eat real food. What are we going to do on her first birthday?
Prayer requests besides the one for a complete healing:
– The bloodwork will be sent out today (Thursday). Pray that they test it quickly and accurately, and that what they find is curable! Even better, pray that when they check the blood, they find nothing because God has already healed her.
– Please pray for Brennan and me as we adjust to all these new procedures and challenges. Early Intervention, physical therapy, speech therapy, feeding tubes, a diagnosis that may or may not be curable, etc. It is so much to handle all at once.
– I need to be able to pump 24oz of breastmilk a day for Tori right now, and that is not happening. For those who don’t know this, it is far more difficult to pump it out than it is to breastfeed as the baby can get more milk out than a pump. It is our desire to keep her on breastmilk as long as possible because it is better for her stomach, so I need a greater pumping supply. I will be starting to take two supplements and will drink Mother’s Milk Tea in addition to eating milk-increasing foods.
Thank you all so much for your love and support for Tori and for us! ❤️ We couldn’t believe how many people posted pictures today.
We also came home to a clean house thanks to my parents and a friend of Brennan’s who gave us a free housecleaning today.
We have meals in our fridge and freezer with much of this month covered.
We have been given funds that will be SO needed as the bills keep coming in.
We have received flowers to brighten our home as well as so many cards with loving messages inside.
All of these things are somewhat lessening the stress of our new normal.
We are still grieving for our daughter, and still pleading with God for a complete restoration. No parent wants to watch their child suffer, and if she has what they suspect, great suffering – and a short lifespan – may occur.
But, in all this, we are choosing each day to trust God completely. We may have our moments, like Tuesday night as we wept, where we ask questions and grieve; however, throughout our lives we have seen God at work in our own lives and the lives of so many others in such mighty ways, and we KNOW that He is in control. I constantly have to remind myself of that right now, and I am so thankful for the promises of His Word. He has a plan that is great and He has chosen us to be part of that story.
We are so thankful to be Tori’s parents, even if things aren’t going like we had hoped and dreamed. She is a gift, and we pray that God will heal her and bring back her smile, vision, laughter, personality, and health.