Friday, August 10, 2012

more prayer for Evangeline..

Evangeline is really struggling to eat and grow. She is 6lb 5oz and 31/2 months old. If she continues at this rate, she will be so developmentally behind. She struggles through almost every feed. We have been trying to figure if the problem is neurological, mechanical, GI related, reflux, taste preference, over stimulation, nipple type, personality, etc. We are constantly troubleshooting and trying new things to help her to thrive, only to be disappointed over and over. Additionally, we are having to start partial formula because my supply cannot sustain them both at this point- and she HATES formula (I have tried several types); screams, kicks, and throws it up. I have had all kinds of people out to evaluate her, and at this point no one really can identify anything definitively. Some say that it is just her body after all she's been through, and there is nothing we can do. Others say that there is a missing link in her care, and if we figure out exactly what her body is needing, then she will take off. At this point, she is cognitively and socially on target, which we are so thankful for! Please pray for wisdom for me to know how to care for this tiny girl, and that she would just freakin eat and grow!

Audrey continues to coast through life like it ain't no thang.

You can imagine how I'm doing after the past 7 months, pray for me.

If you have had experience with this, or have any thoughts, please let me know! I am seriously desperate enough that if you told me to bop her on the head 3 times with a wand before every feed, I would probably do it. Thank you thank you!! I'll keep you posted on her.


16 comments:

  1. Hi Laura,

    You don't know me, but I started following your blog back when you were pregnant. Not sure how I came to read about it - but I'm in the STL area and lost a baby to a birth defect just after he was born. You could say I have a special place in my heart for moms who are experiencing difficult pregnancies/births. Been praying for you for awhile now. Anyway, your post today immediately made me think of another blog post I read recently and I felt that because the connection popped up so quickly, it might be significant - even from the Lord. Anyway, here is a link to her blog - she went dairy free and her breast fed baby changed overnight. Your situation is different, but if your daughter is allergic to something in your diet?? Just a thought. Keep us posted, even though I am stranger, I feel invested in your story. :) http://www.housetweaking.com/2012/07/24/going-dairy-free/

    Julianne

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    1. Thank you so much Julianne! I'm so sorry about everything you have been through. I actually love that blog! Best wishes to you

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  2. Hi! Someone just commented on my blog and told me to check yours out... and I can TOTALLY relate on this!!! Our girls just up and decided to stop taking their bottles one day in February, and we are still going through it to this day. We just got approved to have some free speech therapy through Early Intervention (because there is apparently a branch of speech therapy that helps preemie babies who have issues with taking bottles!!!), and it will start on Monday. I am SO SO SO excited about that. So this is the only post of yours I've read yet, but I'm checking out the rest of your blog too! I will say that helping the babies fixate on something, anything, like a ceiling fan or looking out the window, or singing to them softly or talking to them, helps them take their bottles sometimes. So does walking them around to different rooms. But we have yet to find the magic solution that works every time. I am praying for y'all!!!!

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  3. OK, seriously, I am crying reading your blog. Our girls had TTTS too, and Evangelyn was our littler baby. They came at 29 weeks and 4 days, and they're about to turn 10 months old - and praise the Lord, everything (except their eating habits) is normal... and we've actually been told that they're already pretty much caught up to other babies born when they were - I'll say it again, praise the Lord!! Please do be encouraged. Seriously - y'all are in my prayers! Please let me know if you have any questions or need to talk or ANYTHING... we have just been through something crazy similar!

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  4. AND your girls are GORGEOUS!!!!!!!!!!!!!

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    1. Hey Shelby! Thanks so much- can I have your email?

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    2. YES! It is vafitwins at gmail dot com.

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  5. Just a friend of friend here, but I wanted to make sure you know about breast milk banks.

    https://www.hmbana.org/milk-bank-locations

    There are breast milk banks that do screening on the donors, pasteurize the breast milk, etc, but they usually have to charge a decent amount to cover their costs. There are also breast milk groups and websites where mothers donate their milk directly, but any safety and screening is left up to you.

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  6. Praying now...wish I had answers for you:)

    Hugs from Lexington,
    Erin

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  7. I'm sure you've probably discussed this with medical people already, but have you thought of trying an NG tube on a temporary basis? It would allow you to find out if the issue is with the actual act of feeding vs. GI/digestion. And if she can tolerate the NG feeding (not throwing up, etc) then it might really help her to catch up on her weight and give you more time to work on the feeding issues while she still gets the nutrition she needs. Just an idea (from a nurse :-) Following your story and praying for you guys.

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  8. Hi Laura, I am a friend of the Wootens who have posted your blog for prayer multiple times & I have been following it & praying for you & your girls. My son was not early but he had a extremely difficult time eating & sleeping & confounded our pediatrician for awhile. He was finally diagnosed w/ GERD, milk/soy protein intolerance, & a posterior tongue tie (very rare, where tongue doesn't lift up enough instead of coming out enough like a traditional tie). I was wondering if you have had Evageline's mouth looked at by an IBCLC b/c I had four doctor's look at Jonah (my son) & his tongue tie wasn't caught until I hired a lactation consultant at 4 months b/c the docs were discussing an NG tube & I really wanted to try something else. He had trouble even w/ bottles & it exacerbated his reflux b/c of the severity of the tie & the fatigue it was causing him. He had surgery to correct it at 19 weeks & then we worked w/ an occupational therapist to help him learn to eat appropriately. Both were very helpful. I would also wonder about a protein allergy, especially since she's puking the formula. Jonah threw up every ounce of milk-based formula we ever tried to give him. Protein allergies are more common with preemies b/c they are associated with immature guts. We see an awesome GI doc out of Plano that I could give you the info for. I also have some completely dairy & soy free pumped breastmilk I could offer you if you want it. I pumped it a couple months ago but it has been in our garage freezer so it should be fine. If you want the milk, more info on our GI doc or whatever, I'm in the DFW area & my facebook is http://www.facebook.com/rachael.abedraboh & we can get in touch.

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  9. God never ceases to amaze me. Through all your trials and tribulations He is bringing others to you who have been through what you are going through.They are loving on you and giving words of wisdom and suggestions. Cling to the Mighty One. He will lead you! much love and prayers,
    Claudia

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  10. Laura and Ryan,
    John and I are continuing to pray for you, and for Audrey and Evangeline. We have good friends who chose to make their own formula when the Mama wasn't producing enough fat in her milk and their lil son was not thriving. They tried formula, but he had a bad reaction to the dairy, so they used Weston Price's recipe. I know it's kinda out there, but it might be worth researching and my friends were happy with it. Obviously, you'll talk to the docs, including your dad, I assume, before you do anything crazy like this. My friends used the goat milk variation. For some reason, it won't let me paste the link, but google "Weston price baby formula" and you'll get it. We are praying, praying.
    Love,
    Libby Scrofano

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  11. We continue to pray for you guys and the babies. I wish I could help you, but I love seeing others comment here.

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  12. The babies usually get the most out of and have least trouble with breast milk. You might try only feeding her the hind milk which is highest in fat. The first of the breast milk has less fat. The longer you can go before introducing anything other than breast milk the better. Find a lactation consultant that can help with increasing your production. it is true that supply meets demand. You have to properly fuel yourself to do this, lost of fluids and good nutrition can go along way into growing the girls up strong and healthy. Maybe the healthier heavier child gets the borrowed milk. I used a friends breast milk, and I know of some sisters that nursed each others while they took turns taking vacations. LOL wet nurses have long been used in other cultures. There are numerous new moms at church. You share diet goals, meet a good lactation consultant. I hope you can avoid GI intervention. Rest.

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  13. Honestly I have no clue who you are...I was googling for something else and your blog popped up. But I wanted to let you know that a friend of mine dealt with this with her last baby. They tried everything possible, chiropractic, etc., and just stressed like crazy. Her lactation consultant even called CPS on her, saying she was starving the baby. But eventually the baby grew out of it (around 9-12 months) and while she's still a tiny thing, she's been healthy all along. I hope things will improve soon! Hang in there.

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