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.
http://www.facebook.com/prayingfortori
Even So, Joy 
Bless your hearts. You are going through what has to be the most difficult time for a new parent there can be. My heart aches for you. My husband and I went through a similar situation when our son at 4 months old was diagnosed mentally retarded. Such a cruel name/disease for such a beloved first child/son. While our situations are very different and your outcome may yet turn out to be far less scary than ours, I can truly understand how frightening this all is. Just a few points to share if you want. If at all possible lean on as many people as you can for as long as you can. Plan for “help” as far as possible in advance so both of you don’t get overwhelmed. Lean on, depend on, and offer your shoulder to your spouse. They can be your best friend in all this and can help you in your weakest moments. Most importantly, don’t be hard on yourself. There are so many unplanned, and unknown “firsts” you are both going to have to encounter. You may be scared for a long time. Take the time to look at your daughter as whole new meaning of special. Wish I could be of more help, but do know I pray for all of you, and wish you the best. Remember, you can be strong, this is possible, even when you feel as if you are floundering, it is there you will find your strength. ❤ with love Pat
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Regarding breast milk. I know there are places on line where y can find Moms who are donating their breast milk that you can buy. It is especially available to Moms like you whose little one is sick.
Hope this info helps. Praying for you and your husband and Tori. God is faithful. He will PROVIDE everything.
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Hi,
I’m a new mom from Miami who loves The Lord too and is touched by your story. I’m not sure if this is a weird offer but I produce A LOT of breastmilk. I’m young, healthy, and willing to donate.
Let me know.
Love,
Ali
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That would be amazing!!
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Contact me at alexberm@gmail.com. We can figure out the best way to get you some.
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Less – do you have a good pump? I exclusively pumped with both of my kids and I have a Medella Pump In Style I can drop in the mail to you. Much love!
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That is what I have! Thank you, though!
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My granddaughter was a tubie.. She has been able to resume normal feeding but I’m sure my daughter can offer you anything you need to know about tubies..I know she found a website for very cute little the tube covers.. Please let me know if you want her to help you..
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Lesa, I second the recommendation for looking into breast milk banks. It’s amazing (!!) that you are continuing to pump for Tori. I know pumping is really hard even under normal circumstances. 😦 You mentioned supplements – if you haven’t already heard of it, look into something called Go-Lacta. I’ve used it in the past and it was a huge supply-booster when I was trying to pump ahead of a trip away from baby. It’s also not terribly expensive, which is nice.
Love and continued prayers for you all. <3, Laura
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Lesa, I am a friend of a friend and have been following your blog and praying for you. As a mother of a little girl, I know how precious breastfeeding is. (I had to stop abruptly for medical reasons.) I have heard great testimonies about using fennel oil to increase supply. I would like to purchase and send you some. If that’s okay, please email me at betseysheaffer@gmail.com or find me on facebook and I will order it right away. You will continue to be in my prayers!
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I’m a mom of a 31 week preemie (now almost 5 months old) who pumps around the clock. A few tips, if you need them… I highly suggest renting a hospital grade breast pump. I rented the Madela Symphony for the first few months of my daughter’s life to help increase and establish my supply – I think it was around $100/month and it worked wonders. I’m using the Madela Pump in Style now, but it’s definitely not quite as effective as the Symphony. Ask the hospital if you can rent from them or if they have recommendations in the area. To help increase your supply with the pump, you can do a power pumping session before bed – ten minutes on/ten minutes off for an hour. You produce the most from 1am-5am – as much as it sucks, getting up to pump once during that time really does help. I also highly suggest buying several sets of pumping gear so you aren’t cleaning constantly. It’s hard work, but you can do it! I feel the same as you about avoiding formula and it stresses me out too, but give yourself a little grace if you need to supplement 1 feeding of formula here and there. We moms are so hard on ourselves – you are doing your best and she’s lucky to have you caring so well for her.
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Every post about Tori is teaching me and others so much about our God, thanks to your deep faith and willingness to share your lives with strangers. Thank you for including us in your journey. May God continue to shower you all in mercy, love, compassion and peace.You are strong and able and willing to do the best for Tori, through our Lord, Jesus Christ…..and we are blessed by your faith.
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Lesa, you and Brennan and Tori have been in my daily prayers ever since Aaron Kelley shared your struggle with his blog followers. I just want you to know that the Intercessory Prayer Ministry of Broadmoor Baptist Church in Shreveport, LA, is also holding your hands as you walk this path with Tori. It is a heartbreaking path, but our Lord is carrying you at the hardest points. Nearly 30 years ago I was walking a hard path with adolescent daughters and found a song that saved my sanity, if not my life. I played it over and over, sang with it and sang it to myself many times a day. You can Google it, if you’d like to hear it. It’s by 2nd Chapter of Acts and is called Night Light. Here are the lyrics, but they are truly most powerful when heard sung (Just reading the lyrics again brings tears to my eyes – tears of faith and gratitude):
All along in my life
You’ve been there
Ever presently watching
Always in your care
And I just want to thank you for loving me so
And I just want to thank you for never, never letting go
Through the storms at night you would shine your light until the break of day
Through the storms at night you would hold me tight, and
Never, never, never leave my side
You’re my night light
And never, never, never leave my side
You’re my night light
Praying – praying – praying …. and TRUSTING!
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Oh, fiddlesticks! Don’t bother Googling it! Here’s a link to a video of it to copy and paste: https://www.youtube.com/watch?v=2XgcO_WoExc&list=PLD455DE75DF12217E
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I’m just remembering some ideas from an LC class I took while working in a
Pediatric Clinic…….this is concerning time spent pumping your milk for Tori. Have you tried visualization techniques ? One in particular is to have a piece of clothing, a blanket or sheet that has been with Tori for a while, with her smell on it and you hold, smell it while preparing to pump and throughout the pumping session. If you can block out the sound of pumping with ear phones, or whatever, close your eyes and visualize Tori at your breast, feel her suckling, “smell” her scent, “hold her” in your imagination, and allow yourself to experience the joy of breastfeeding, rather than the “job of pumping” perhaps the brain chemistry involved will help contribute to increasing your milk supply………. And since you are a woman of great faith, you could also try to allow the Holy Spirit to envelop you in a creative way, to be in a place, free of pain, worry, anxiety and be in a place of warmth, good health, love,and nurturing. Praying for you………Linda
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I cannot imagine what you are going through! I am part of the Thirty-One sisterhood who are praying for your sweet baby! If you are having supply issues, try More Milk Plus. You can find it on Amazon. It doubled my supply. And you can find lactation cookie recipes online, they also helped. Breast milk will be so beneficial for your little one. Cherish the moments you have with her and know there are so many praying with you!! God Bless
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Hi Lesa, I know things have changed a bit since this post but if you are still trying to pump. I wanted to encourage you to try different pumps (if you haven’t already). I found way more success with a manual pump. At first it sounded like so much work but it actually was less work because of how much more I was able to pump. (I also didn’t have to be near an outlet and could pump almost anywhere if needed with the use of a nursing cover.)By going manual I could mimic the natural pace of my baby. I hope that helps. In the grand scheme of things it feels like not enough. I am still praying like crazy for Tori.
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