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Old 07-08-2011, 10:06 AM   #1
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I am currently in the hospital with my 1 month old DD with a dx of failure to thrive. In one month she has still yet to gain back her birth weight and over the last week she hasn't gained an ounce. She has been EBF since birth and honestly seemed to be eating and sleeping just fine. I spoke with several LCs just to be sure all was well since i have a persistent fissure on one nipple. They have all said her latch is perfect and they could see no reason for the nipple damage.

Here in the hospital the LC thinks DD has an issue sucking correctly even though her latch is great. Which would account for the low supply and nipple damage. We will be seeing an oral motor therapist on Tuesday to address that. In the mean time I am supplementing with formula and pumped milk with an SNS and then pumping after every feed as well (only getting about 20ml from both breasts together). The problem now is I know I should be getting her on the breast often but she wants nothing to do with latching closer than every three hours and most times won't take both breasts. I am assuming because the formula is more filling. I will also be starting fenugreek and blessed thistle to try to up my supply as soon as I can get to a store.

The disappointing part is that the LC has warned me that it is likely I will never be able to EBF. Unfortunately, I have two older kiddos to take care of and just cannot feed with the SNS and pump like this for an extended time frame. It takes up nearly all of my time here in the hospital and I have no other responsibilities here, I just don't see it working out at home.

UPDATE 8.11.11:
So much has changed in the last month! I have been seeing a LC 2-3 times a week since we left the hospital 4 weeks ago. She has helped us wean off supplements and track weight gain. For the past two weeks we have been happily nursing round the clock and only giving one two oz supplement a day. She has gained more than TWO pounds since we left the hospital and just on Monday weighed in at exactly ten pounds! I can totally handle one supplement a day, I just hope she continues to grow well so we don't have to add supplements back in.

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Old 07-08-2011, 10:21 AM   #2
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Re: Needing encouragement!

Hang in there mama!
Hopefully the oral motor therapist will be all it takes to help your situation. It's a lot to take on with pumping, plus BF, plus SNS, plus formula, and your LO knows how much you love her doing all this! Your LO nursing is truly the best stimulation to make more milk, and the herbs help too. There is a prescription med called Domperidone that is commonly used to increase milk supply too, side effects are little to none. I started out with a low milk supply, I still take Domperidone with Motherlove's More Milk Special Blend every day. I was consistently using a LactAid SNS during BF sessions.
At that time, I was making about 30% of what DS was eating in a day, the rest was formula. Since then I've basically weaned us off of the SNS and now I'm making 75% of his daily needs. So the LC might be right, but she might be wrong. Each women is different. It also doesn't hurt to have a 2nd opinion, a different LC might be more encouraging.
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Old 07-08-2011, 10:29 AM   #3
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Re: Needing encouragement!

Good luck, mama!

I hope everything helps you!
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Old 07-08-2011, 10:45 AM   #4
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Re: Needing encouragement!

Hang in there mama! Sounds like you have a lot of people on you and baby's side. Remember though that you also know what's best for you and baby. You care for her, have been with her since birth and are HER MAMA! If you can find a way to meet the feeding requirements though your own milk, do it. My LO had a failure to thrive dx for a short period of time. We exclusively pumped so we could identify exactly how much he was taking in, had things not gotten better and we had to keep searching for answers we planned to get a scale that allows you to weigh your babe before and after feeding so you can find out how much she is taking in through nursing. I don't know much about SNS, but if you need support for exclusively pumping or anything else, feel free to PM me and there are a lot of mamas who have done it a lot longer than I.

Most importantly, take care of you!!! You cannot give to her if you are too tired, hungry, etc.

Good Luck mama, and really
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Old 07-08-2011, 10:47 AM   #5
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Good luck with the oral motor therapist! I hope you will be able to figure out what's going on and continue your BFing relationship!
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Old 07-08-2011, 10:47 AM   #6
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Re: Needing encouragement!

You never know what your body is capable of doing! I started out supplementing a lot. My LO was a very lazy nurser and just wanted the bottle(which hurt my supply) bc it was faster but when he started waking up it got better. Just keep working on it and it will get better!!
And and if you can't get it to be 100% just remember that your sanity is very important and to try to find a balance that works for you guys. It's much better to be comfortable and relaxed then worried and anxious about all of this. You are a great Mom and your kids will love you no matter what!
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Old 07-08-2011, 11:18 AM   #7
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Re: Needing encouragement!

Oh my goodness - I could have written this post! My son was also diagnosed as FTT when he was a month old and he was hospitalized in March (he was 4 months old) because he was losing weight. He was 9lbs at birth and 8lbs 3oz when we went home. Everyone (doctors, LC, nurses) said that he must have been swollen at birth to have lost so much weight. (he wasn't) Turns out he has a problem sucking and swallowing (dysphagia), and was working so hard to eat that we was burning more calories than he could get.
At 4 months old he only weighed 10lbs, and he started losing weight, so his doctor placed him in the hospital for testing. I am so thankful that it was "just" a sucking/swallowing issue because they tested him for some pretty scary things. I too was EBF and had to stop because they had to find a nipple he could use. I pumped for 3 months but decided that this was not working out for my family. (I tell you this NOT to discourage you and I am not saying you can't pump. Just telling you my story) Not being able to BF was very hard for me - I felt like I was morning a loss, and no one really understood that.
Anyway, he is now 8 months old and almost 16 lbs. He has started solids with no problems. His weight gain is still very slow, but we are expecting it to pick up once he is not sucking on a bottle for his food.
All of that to say - HANG IN THERE! You are in the best place to figure out what is going on, and one day this will just be one of the many stories of your baby's life. Please feel free to email me if you need to talk - melissahblogs@gmail.com Praying for answers! ~ Melissa
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Old 07-12-2011, 07:25 PM   #8
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Re: Needing encouragement!

Hi, just wanted to know how things are going, I was just thinking about you! I hope your baby is doing better and that you are working out a way to make BFing work and have baby gain
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Old 07-12-2011, 07:48 PM   #9
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Well after a week in the hospital we are finally home. They tested her for cystic fibrosis and it was negative! We saw an oral motor specialist today and found that her cheeks and jaw muscles are weak and we learned exercises to help with that. Hoping that will eventually help her empty the breast enough on her own. For now I am breast feeding with a supplemental nurser but she has really only been taking 1-1.5 oz from that and then pumping after to empty. She did manage to gain a pound in the week we were there!
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Old 07-12-2011, 08:09 PM   #10
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Re: Needing encouragement!

Welcome home! How wonderful that your dd gained a pound! I will be praying for you. I have had to work extra hard to bf my third, I know it is tough to do extra supplementing and pumping with the two older kids too. Do you have help at home? i am blessed to have my MIL nearby and she usually takes my older two for at least a few hours a day.
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