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Preemies
Feeding and lung issues
I was feeling so good about Hilyer's feeding until Monday. We had a follow up appointment with our pulmonologist - it was supposed to be a routine visit. It turned into a 3 hour event 
Hilyer is up to 8lb8oz. While this is HUGE compared to his birth weight of 1lb7oz, he's slowing in his daily gain average. Because he's not gaining, he isn't growing healthy lung tissue and is no where near coming off his O2. In addition, everyone at the pulmonologist's office is concerned that it's going to affect his overall development.
After talking A LOT, the dr thinks Hilyer has reverse reflux. His primary reflux issues don't seem to be when he's eating and right after. Rather he's refluxing well after he eats and it's likely that some fluid is getting into his lungs. Because of this, his resp. rate is VERY high and he's burning too many calories breathing and therefore isn't gaining weight.
There isn't a test that can be done to see this, but they modify eating and see what happens. Additionally, they think he has some delayed gastric emptying issues.
So, we will be checking into the hospital on Nov 10th and spending 3 days there. During this 3 day period, Hilyer will be fed via an NG tube. They will empty his feeds deep into his stomach to minimize this type of reflux. He will be hooked up to an apnea monitor to keep track of his resp. rate and will be weighed daily.
If the dr's diagnosis is correct, I think we're headed toward a G tube This worries me because everything I've read says that most kids with feeding tubes stop eating by mouth completely. I talked to the dr about these concerns and he assured me that we will only tube feed at night after feeding by mouth all day. He just wants to make up for the missing calories. And we would start some intensive feeding therapy to help with his oral aversions.
I'm so torn. I want him to gain weight. I'm ready for him to get over this hump. I want him to catch up to his peers. But I am NOT excited that a feeding tube is our only option. And then again, if we're going to end up with a tube, I'd rather do it sooner rather than later.
UGH! Why can't anything be easy?!?
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Re: Feeding and lung issues
I hear ya! And I'm sorry your LO is going thru this..it seems they sometimes can't catch a break.. but I'm sending you positive energy.. can they do an NJ tube while he's in the hospiatl for those 3 days to see if he gains that way.. or an xray to see if there is a blockage if their concerned it's not depositing the right way
We are getting a gtube soon too...and if it helps her gain weight as we practice the oral feeds.. i'll be happy.. our surgeon said some kids only need gtube as long as they need it.. 1 month to 2 years.. sooo just keep thinking he wont need it that long.. GL
Are you a member of the mom of miracles FB group? There are a couple people on there who had G tubes and may be able to give you some feedback.
I have no advice. But, I just wanted to say I'm thinking of you guys. I wish little H could catch a break. It must be really hard to see things are so hard for him. Hugs!
We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
Darn it! I'm frustrated for you. Poor kiddo, poor you. Three days in the hospital and then possibly a g-tube. I'm sorry. I hope they get it figured out and you can avoid the G-Tube.
Do they have him on anything for the suspected delayed gastric emptying? Kevin is on Bethanechol and that seems to help.
Have they done a barium swallow? That's outpatient and may show the refluxing. Well, if it's delayed, that might not catch it so maybe never mind.
I am a member of the FB group. I will make a post later to get their experiences.
I posted on the SN board a while back and several of those ladies provided me with great info and links to feeding tube groups. I know there's support out there, I'm just bummed that we have to even make this decision.
We talked about starting meds, but we're going to wait and see what we find out in a few weeks. I think I may call and talk to our NP about doing a GI series while we're there for the weekend. I mean if we're there, why not check out everything, right?
He's done a swallow study to check for aspiration, but it was negative. It showed penetration, but his airway closed and blocked the barium from entering.
Yeah, with the type of reflux we're likely dealing with our dr said it's nearly impossible to "see" it because there's not time frame for when it happens.
I'm so sorry you and H are having to deal with this
It is so hard when our LO's won't eat like they should. I told my mom I would rather R wake me up 5 times a night as long as she was eating well. This eating stuff stresses me out, so I understand. I hope they find out what's wrong and you get some answers and can avoid the gtube!
I did talk to someone who's baby had/has a gtube only at night. They waited WAY too long to get one and the oral aversion issues got so bad the child wouldn't eat at all by mouth. They waited until age 2 I think to get the gtube. She's now 5 years old and still has a gtube at night. I'm sorry you're having to even make/think about this decision!
I'm sorry, that is really stressful for you
But honestly, based on what you are saying, a g tube could be the best thing for him. It would give him extra calories without pain or exertion and will help him gain weight to get him over this hump, like you said. He will ultimately be happier and more comfortable, even though it will be hard on you.
Keep us posted and best of luck.
BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
FAQ: My Friend Just Had a Preemie, How Can I Help?
Do you know if Lozano was the one that suggested it for her little guy? I really like him and trust that he knows what he's doing, but I wish we had another option.
Big big big hugs!
Feel free to FB or E-mail me if you need ANYTHING!
I totally understand and feel for you.
BPF May 12, 2013 :: EDD Janaury 22, 2013 :: MC Began On July 14, 2013 at 12W4D
Born at 34w2d:
FWIW Evan did eat some by mouth during the day with a feeding tube at night. He usually didn't start eating until later in the day though. For us it seemed there was a set amount of calories Evan would eat, like his body just said this is how much I need and then stopped. Mind you this is AFTER he started feeling better and we started tube weaning. While he was feeling poorly, there was NOTHING that would get him to eat by mouth, let alone enough to grow. When he did start eating by mouth though, fortifying things just = less volume, the more we tubed at night just = less during the day.
I know lung issues can affect growth, (read a comment from a neo about it), and reflux on top of it just compounds the issue. Evan still breathes at twice the rate of his peers, when he's resting even. His basal metabolism (metabolism used just doing the survival functions....heartbeat, brain, heat, etc), is so much higher because of that. I think among many other problems going into Evan's issue, was the fact that he needed more calories to grow than was natural for him to take in by mouth.
There are at least 7 g-tube mom's that I can think of off the top of my head at this board www.thepreemiepalace.com and a lot more FTT mom's and I know at least one aspiration mama. There's a ton of experience and when you combine all of us there.