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Rowan Updates


Forum: June 2013 Playroom

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  #1  
August 13th, 2013, 08:05 AM
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Okay, all of Rowan's tests from the hospital have come in. They're all normal. Thankfully the one that I was most worried about came out negative. That one would be the blood test showing bad amino acid growth or development or however you phrase that. Meaning whatever is going on isn't degenerative.

The swallow test is normal. The stomach emptying and passage of food through the small intestine is normal.

Everything is NORMAL. AND THAT IS SO INCREDIBLY FRUSTRATING. They say that no news is good news but I can't stand it. There must be SOMETHING wrong!

He gained weight at the hospital and for a week at home. And then he began to reject the gavage feedings. He'd cry and get red in the face and act like his stomach hurt as we fed him. He'd throw up the milk. After the testing today he had not eaten in 5 hours. He threw up the first ounce and then refused to eat the rest. He wasn't even ACTING hungry at all. We've tried everything. The milk is warm, the gavage is low (we keep taking it lower/slower to help with this), we try not to stress the bottle right now so he doesn't get all tense and worked up.

By all accounts he is healthy and normally developed. Just not gaining weight, growing, or tolerating any way of getting food into him. You would think it sick to be sitting here and saying "I really hope they find something wrong with my kid" but it's true. I am hoping that some test SOON will show what is wrong.

As for pumping, I'm trying to ease my mind and heart around the fact that he will never breastfeed. I'm telling myself every day that it's okay to be late to a pump or skip a pump or to not pump for as long in an effort to wean off the pump. It's very very very hard. I don't want to give up but pumping and all the stuff that goes along with pumping is time spent away from my kids. I can't hold Rowan while I pump and feed him with the gavage. So I'm not even getting that bonding time with him during feeds. I could continue to pump and tube feed him all for the sake of getting "the best" but I miss holding my baby in my arms. I rarely even get to rock him. I've decided to start the process at 3 months so at least I can say I got through the 4th trimester. But then I will be dropping pump sessions.
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  #2  
August 13th, 2013, 08:11 AM
zkat's Avatar Mega Super Mommy
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I was going to message you last night for updates.

I am sorry you don't have answers. Hopefully they will find something, soon. As far as giving up the pumping. I understand. It is very hard and time consuming and almost a full time job. You have done your best and given Rowan the best of everything, including love. that is what matters.

HUGS>

Kat.
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  #3  
August 13th, 2013, 10:09 AM
navywifey2003's Avatar Home Birth Mama
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I am so sorry hun! I would feel much like you, I would want a reason because there has to be! Hang in there, you are an amazing mother and your children are very blessed to have such an amazing advocate for them!
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  #4  
August 13th, 2013, 10:12 AM
QueenCrafty's Avatar Courtney
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I'm sorry there are no answers yet. That has to be so stressful. As weird as it is to want to know what is "wrong" with him, that would at least mean a game plan to fix it.
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  #5  
August 13th, 2013, 11:13 AM
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You are doing great. I cannot image all you have to handle and also to pump. I say - whatever gets him to eat. Try not to stress even more. We support you whatever you decide at three months. Hopefully he will accept food and soon have a growth spurt.
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  #6  
August 13th, 2013, 11:42 AM
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Thank you everyone We all have our own challenges, it's nice to get support from here

I will try to keep you guys in the loop. Currently we're waiting on the GI specialist to take another look at the test we did today to see if he noticed something the doctor in radiology may have missed. We know more tests will be ordered but I have no idea what kind yet.
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  #7  
August 13th, 2013, 01:02 PM
MamaSkunk's Avatar Mega Super Mommy
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Oh no Bonnie I am sorry that you don't have answers yet. I will keep praying for little rowan and your family. And do not feel bad. Pumping exclusively is hard!! Hugs!!
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  #8  
August 13th, 2013, 01:10 PM
princess136's Avatar Super Mommy
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I too am praying for you all. I would feel the same way on wanting an answer so you could have a solution. Please keep posting so we know how you are doing and can continue to provide support.
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  #9  
August 13th, 2013, 01:12 PM
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So sorry that you do not have answers. I hope that he makes a turn around or you get some answers soon. big hugs!
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  #10  
August 13th, 2013, 04:09 PM
Steph625's Avatar Super Mommy
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Thats very frustrating not to get answers but look at the positive. The tests that came back are normal. Yay for that at least. But I completely understand how frustrating it is...I am frustrated for you! And I completely sympathize with pumping. I want to give up on it as well. So time consuming. And sometime you just dont have the time to pump. Hugs love!
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  #11  
August 14th, 2013, 03:51 PM
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Okay, the doctor took another look at his test from yesterday. He confirmed that everything looked normal.

After a long talk with the GI RN about his feeds, his reactions, what happens, and how we feel about it she came to the conclusion that it is all a sensory thing. That ALL of Rowan's issues are a sensory thing. He doesn't like how it feels to eat. Literally. He doesn't like how it feels in his mouth, going down his throat, and sitting in his stomach. A full, satisfactory feed is frightening and upsetting for him.

Because even with the fortified feeds he is not getting the amount of calories he should be getting they are ordering an electronic pump for him. Whatever he doesn't eat out of a bottle in 15-20 minutes gets put into a bag and then metered out by the pump over X amount of time. The RN will be calling us tomorrow with the new amount and time spread. We believe it will be every 4 hours now with 4.5 ounces, with the feed duration lasting 1.5 hours.

I'm glad we're trying out a new solution but, as ever, I'm incredibly mad. It seems that every step we take on this journey is taking us away from being able to bond. So much of our time is being spent getting food into this kid that we can never just kick back and relax and enjoy him. Ever. And now a ****** robot is needed to feed my kid! I know it's nothing we're doing or I have done but I honestly feel like a complete and miserable failure. I cannot feed my kid.

If this does not work then they will consider either putting in a new tube that will bypass the stomach completely or will do surgery and put one in his small intestine. That way he will never feel the feeds. I have no idea what that would mean for future eating habits.
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  #12  
August 16th, 2013, 12:27 AM
mommy220's Avatar Mega Super Mommy
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I am so sorry, I will be praying for you guys. Hopefully this does the trick and he starts gaining without more interventions.
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  #13  
August 16th, 2013, 11:03 PM
MamaSkunk's Avatar Mega Super Mommy
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Oh it must be very frustrating to be dealing with this all. I feel so bad for you and little Rowan. I pray he gets well soon and if you need to talk please feel free to text me if you need to vent. Hugs!!!
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  #14  
August 16th, 2013, 11:39 PM
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Oh Hun. you are not a failure, I know it's easy to feel that way but please know you have as much support as we can give you. Praying for your whole
Family.
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  #15  
August 17th, 2013, 10:47 AM
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Thinking of you today hun and your little one. We are here for you!! Prayers for strength and for answers.
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  #16  
August 18th, 2013, 08:14 PM
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Not so much a Rowan update as a me one, lol Tomorrow night I will have one for him because he sees the GI again tomorrow.

Anyway, I have been increasing the time between my pumps. I am pumping now every 4 hours. So far every time I have pumped I have gotten 4+oz. Like, right now, I have pumped almost 6oz.

On Tuesday I step it up and pump every 5 hours. I'm curious if my body will keep up and do 5+oz at each one. If it does and when I hit 6 hours of pumping (only pumping 4 times in a 24 hour period) I might just hang on to that. I don't know though. Can you pump only 4 times a day and make at least half of what your baby needs to eat for the day?
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  #17  
August 18th, 2013, 09:55 PM
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Oh my goodness, what a crazy ordeal for you and poor Rowan! I hope something changes for the better very soon, you deserve some great news!! I will be watching for your update tomorrow, many thoughts and prayers for something good to happen.

I think you are totally right to start spacing out the pumping sessions, you need to look at Rowan's health and your family's wellbeing holistically. For you to be present and engaged as much as possible, is a really big deal, especially given all Rowan's extra health needs right now, and pumping takes a lot of time and energy. If you can get to a sustainable level with it where you don't pump as often but you still get a good amount of milk out, that would be ideal, it seems. You may be able to do it just fine, some moms have large storage capacities and can go longer between feeds/pumps and provide more milk per session and get the same volume out in the end, and it sounds like you might be one of those. I've also read that you can keep production up with less frequent pumping sessions by just pumping for more time than you usually would, and keeping the pump going for a few minutes after the last drop comes out. Good luck!!!
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  #18  
August 19th, 2013, 10:29 PM
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Yeah, I've been timing my pumps to be about 20-25 minutes but once I hit every 6hours I think I will go 25-30, which is what kellysmom.com says to do anyway

Okay, Rowan officially weighs 9lb7oz. He's about a pound behind where they wanted him to be at this time. We're already fortifying his feeds so that he eats only 3oz but is getting the caloric intake of 3.5oz. Because he does so well on the pump feeds at night they have slightly increased his intake for those 10 hours will be 13.5oz, fortified (324 fortified calories instead of 270 unfortified). We are to also always offer 3.5 in the gavage in the hopes that he will just take it. Sometimes he does.

The GI doctor wants to see how Rowan gains over the next 4 weeks and to give him time to pick up more with physical therapy and see if they can't get him to suck better. I have very little faith in that. They only see him once every 2 weeks and they have him scheduled at times that he doesn't eat. I have no idea how they're going to get him to suck properly like that. Basically, this means that 4 weeks from now they will be putting in a permanent tube in his stomach so there isn't a tube on his face that can get around his neck when he starts rolling over.

This also means they will do more invasive tests. He mentioned scoping him and doing an MRI. He wants to wait until Rowan is older though because he will have to be put under. But if Rowan grows and gains weight then they probably won't do those invasive tests.

So basically now it is a waiting game.
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  #19  
August 19th, 2013, 10:40 PM
MamaSkunk's Avatar Mega Super Mommy
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Oh jeez hun. I hate the waiting game too. I am glad to hear he has gained some even if its not as much as they wanted. Have they really said why it is that rowan doesn't like the feeling of feeding? I also really pray to God or any deity that may be listening that Rowan doesn't need all those invasive tests and procedures. Please please get better little man!!
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  #20  
August 20th, 2013, 04:07 AM
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They're still not 100% sure that sensory issues are what is going on. They believe that is why he is rejecting the gavage since he can take more when he is a sleep but getting even 3oz in him during the day is a challenge. The doctor says that neurology feels strongly that he was born with a too immature digestive system. Even though he was post-term (and spontaneously) his system just wasn't fully developed. The doctor is hoping that with a little more time and with more weight he will improve on his own.
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