Today we had two appointments: The first was with pediatric surgery to discuss our options for a G-Tube, and the second was with the Hummingbird Program to discuss comfort care.
We are being forced to make decisions that no parent should ever have to make; and, without God’s miraculous intervention, this is far from the end of those decisions.
I know that Tori is not the first child to need feeding tubes, and I know that the G-Tube will greatly improve her comfort and it will reduce the stress around NG tube feedings when I am by myself with her again. But, these are not decisions that we want to be making. I just want her to be whole again, to be healthy and growing and normal.
I found myself feeling paralyzed in a way as the surgeon discussed our options – keep the NG tube since her life expectancy is so short, have a G-Tube (“Mickey Button”) inserted surgically, or do the G-Tube along with a Nissen (See details here), which is what was recommended by Dr. Escolar, but is also a major surgery.
They offered a great deal of information and asked us to think about it at home and let them know. We decided that we will do the G-Tube but will wait for the Nissen since it can be done later. We will see how she does with just the G-Tube for now.
We then headed over to our Hummingbird Program appointment.
Essentially, the Hummingbird Program is for children who have chronic or terminal illnesses. They provide support to the entire family as well as the child. This was our first meeting with them, and it lasted two hours.
We discussed comfort care for Tori and pain management. We were given a prescription for morphine and Valium to use if she is in terrible pain that the other meds aren’t relieving.
In that moment, I was forced to re-enter the reality that our daughter is dying. There is a fine line between living in hope for a miracle and living in the reality that our baby girl has a terminal illness…that her life expectancy can likely be counted in months, not years.
The pain we are experiencing as her parents is palpable at times. My heart hurts like never before. Yesterday we began discussing what we want to do if God chooses to take her home – a discussion we never finished because it was too difficult. No parent should ever have to plan their baby’s funeral.
We are waiting to hear when her surgery will be so that we can plan a trip to California to see my side of the family.
And we are still praying, along with thousands of others, that God is waiting for the perfect moment to heal her.
Some of the best Bible moments are the impossible situations that are followed by the words, “but God…” We are praying that this is one of those times.
Even So, Joy 
Oh my heart just breaks for you. I can’t even imagine having to decide these things for Tori. So many prayers being lifted up right now, and so much hope for the God who can do miraculous things when there is no other option but for him to work. ❤️
LikeLike
Praying hard for you! Every time I see pics of Tori, I think of how beautiful she looks and how much I know God loves her and praying for his PEACE to just envelop all of you!
LikeLike
You are not praying alone. We join you in fervent prayers.
Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the will of God. Romans 8:26-27
LikeLike
Every day I pray for a miracle. Every single day. I will not stop.
LikeLike
I am praying so fervently for a miracle and for strength and peace for you all.
LikeLike
Thank goodness for Jesus!!! We walked in your shoes in November, and are now walking the path of grief after baby Gabe went to heaven November 24. There is a Focus on the Family broadcast from Jan 27-28 I believe…Faith for the Terminal Battle that may be an encouragement to you! And rest in the peace of His love when you can…parenting, loving, and caring for Tori will be exhausting in new ways in the days, weeks & months ahead. Love to you!!!
~~Laura
LikeLike
Praying for you…
LikeLike
You are in our hearts and in our prayers.. There are really no other words that are sufficient…. ❤
LikeLike
Praying praying praying. My eyes are filling with tears reading this. Praying for the peace and comfort only God can give.
LikeLike
I am so heartbroken for you and you’re Family..I can just imagine how hard it must be to have hope one time and then having to go through all the talks about what could happen..I just Pray that God will show us all a miracle with healing for Beautiful Tori..I will be thinking of all of you and Praying….God Bless you all..
LikeLike
Prayers of peace and comfort.
LikeLike
Thinking of you and praying!!!! ❤
LikeLike
Praying for strength for you both to make difficult decisions ….praying for God to give you moments of joy along with the difficult….praying that you can rest each night a little so refreshed for your baby girl the next day….just praying for you….without ceasing!
LikeLike
I’m so sorry. When I was a hospice nurse, I always said ‘hope (and pray) for the best and prepare for the worst’. I’ve been through the loss of a child, planned a memorial service. If it comes to that, you will get through it. I’m proof. But I’m praying for a miracle with you…
LikeLike
My heart breaks for all of you! I pray and think of your baby girl daily! Xoxo
LikeLike
I have been following Hunters Hope through Gemma’s Krabbe Journey for several months. I’ve read about her going from nursing for a whole year to having to get the G-Tube. As I have read about several others getting it. It doesn’t seem to be the end, although I understand how difficult the decision is, I myself would be totally devastated over it.
Hang in there with your Faith that God will help you with each decision you make. I have been including Tori in my Prayers along with Gemma and many others. Your Journeys are so tough and I cry every time I read most of them,. I have a new granddaughter who just turned a year on 2/14, every time I look at her I can’t help to fear what and how here life could change in the blink of an eye. If it would be the Grace of God, it is Mothers like yourself that would help me understand, because your sharing had taugh me so much! God Bless!!!
LikeLike
My heart is breaking. Tori And all are in my prayers. “For we walk by faith, not by sight” 2Corinthians 5:7
LikeLike
I am praying from Alabama.
LikeLike
My heart hurts for you and your pain. I cry as I read your posts and can not imagine your situation or how strong and loving of a woman you must be to handle it with such grace. Love and prayers from Schroon Lake NY.
LikeLike
My thoughts and prayers are will with you and your precious baby girl.
LikeLike
Praying along with you for His prefect healing in His prefect timing.
LikeLike
With GOD, NOTHING is impossible!!
LikeLike
Praying for a miracle.
LikeLike
I am praying for you here in Lemoyne. I pray our LORD Jesus will be the Prince of Peace that you all need during this time. That is part of His resume, after all. King David wrote that we are knit together in our mother’s womb. I pray the LORD Jesus will get the knitting needles back out and heal this baby, and that there be no long term side effects!
LikeLike
Lesa, what you are going through is just unimaginable, awful, and horrible. But I am struck by the love in your words, the love in the photos, the adorable picture of Tori in this post with her daddy. I know, I believe that God has already equipped Tori with the perfect parents, the perfect family to walk alongside her through this valley, no matter the outcome. She is so thoroughly loved, you have already given her so much. Please know that so many total strangers are praying you all through this, that we weep with you, we hurt with you, and we are praying for strength and healing and miracles!
LikeLike
…praying for your strength and comfort for Tori, knowing that God is with you.
LikeLike
Psalms 139
>
LikeLike
I’m a friend of Rachel Love’s and just started reading your blog after she shared on facebook. My heart aches for you, Tori and your entire family. Our daughter was just diagnosed in December with a rare disease, so we are new to this whole world. When you said you felt paralyzed while talking to the doctors, it finally put into words what I have been feeling. Thank you for sharing your family’s story. My prayers to you!
Michelle
http://www.thedancewedo.wordpress.com
LikeLike
These discussions that we should never have to have are so hard. I was thinking of you as I stood in line to refill our daughters prescription for Valium. Flying will be a lot easier with that in my bag but it would be nice to not need it. I am so glad that you have the support that you do. Thinking of you often and holding you in my prayers as I do.
LikeLike
We are holding you up in prayer for strength and wisdom for you both as you travel this journey with your precious little one.
LikeLike
Tori, your husband, both sets of parents, and you, Lesa, are on my mind every single day. Every day I pray. Every day I check this site to get an update, and I always hope it is good; regardless if it is or not, I am always given new things to pray for, and I am greeted with a sweet picture of your dear Tori. I thank God for your unwavering faith. I am so sorry you and your family are going through this. I will continue to pray.
LikeLike