I need answers Like yesterday

daysfancarlymanning · #1 March 14th, 2011, 10:18 AM

I'm so sorry to dump and vent again but I don't know where else to turn. I took carly to wic this morning, just to see if perhaps she'd been gaining weight these past few days. She LOST 3 oz! And they're scale is like 1 oz more then the peds so maybe even 4 oz on peds scale. I am beside myself. I am scared for her and don't know what to do? Something is wrong here and I am doing everything I can to help her and I'm failing her. I can't get my own baby to gain weight. she was doing SO well with that 4 or 5 oz gain 2 weeks ago or 1 week ago. I can't even remember it right now. Sorry. Then she slid backwards. I'm telling the ped tomorrow I need a referral to the endo dr. And perhaps even another cardio workup from a different dr? I don't want them to have to insert a feeding tube into her. That scares me senseless. she is bfing and getting milk. When I pump I noticed she took in at least an oz and then I toped her off with the bottle. I'm trying to push more feeds more frequently today. But she won't have gained 5 oz overnight and I'm terrified now ped will call back cps and say she's 9.0 lbs now and ftt and this needs further investigation. What can I do for my baby? I need a dr on my side who works with me and I don't get to the new ped till march 26, and that's IF they do not cancel. Unfortunately no other ped takes me ins or has any openings so I'm stuck. Sorry for venting but I HAET this.

i3ai3ydanny · #2 March 14th, 2011, 12:59 PM

I am so sorry hon. I can't imagine being in your situation with all this. Did you call every ped in the phone book? If she isn't gaining yet she NEEDS a ped that cares. If you have to drive an hour for a while to get her the care she needs it would be worth it at this point. Have you called her GI back yet? She will likely want to know and may have you come back in sooner. ((((HUGS))))

daysfancarlymanning · #3 March 14th, 2011, 01:22 PM

Thanks yea I'm going to do that...call peds about 30 mins away. I'm about to go out for my bday dinner so I'm doing it first thing in the am. They close soon here anyway. But you're right...it is worth it to find one who cares and won't just stick her in the hospital just cuz. And yes I called the ped gi. She was the one who started in with leaving it up to my ped and possibly hospitalizing her. She also said she'd be calling my ped, which really worries me as now it's going to look bad the min I get there. I refused to call and update them and I'm hoping the ped gi just forgets but prob not. She said she'd call fri and never did so maybe? Ped gi said do 24 cal every bm bottle today and feed her bm as often as possible. She is latching but I'm topping her off with 3 oz more of bm on top of whatever she takes and PRAYING we'll see some sort of gain for tomorrow. Is she ok if she's growing and peeing and pooping and meeting milestones? She is but I am so afraid of her brain growth slowing or something more happening? I can't stop worrying, especially since she's never LOST 3 oz. I thought 2 was bad enough but she was sick then. She isn't sick anymore.

Ditzzy · #4 March 14th, 2011, 07:18 PM

I would call the closest childrens hospital and ask if they have a feeding clinic there. Most childrens have them and they will help more than you realize. That would be my fist step, finding a feeding clinic and getting in to see them.

As far as feeding tubes go, we fought it forever too. When she finally had an ng tube put in, we were stunned by the difference. After it's placed, the tube doesn't bother them. It bothers parents way more. I hope your dd doesn't need a tube, but if she did get one temporarily it might shock you how much easier it is than you think.

You aren't doing anything wrong. ((Hugs)) There is obviously something wrong and you need a Dr to listen to you and find the real problem.

i3ai3ydanny · #5 March 14th, 2011, 07:25 PM

You need to remember..if she has a dirty, wet diaper, three ounces just went out the back end... Timing is crazy when ounces count for weight checks. I remember when we had weekly and biweekly weight checks (between 12 months and 2.5 years) that as long as danny was within 8 ounces (.5 pound) of his last weight, he was considered as weighing the same because pooping or peeing can vary a weight by that much. Try to get there early and feed her right before you go in so that she will have the boost..at least for tomorrow... :/ I would maybe request certain tests if they do decide to hositalize her. I would include a pancreatic function test, a ph probe, an endoscopy with a biopsy of esophagus, stomach, and duodenum, and a holter monitor for her heart rate. If your GI thinks she needs to be admitted, I would allow her to be admitted to the hospital that your GI works with...not your ped. I would request that a care team be made up of a cardio, endo, GI, and a nutrition consultant. Maybe a nutrition consultant (or lactation consultant) could give you ideas of foods to eat to increase the fat and calorie levels in your milk. This sounds like a lot but if she is going to be admitted and have testing then they should kill as many birds with that stone as possible... I wouldn't object to a feeding tube if they would allow you to run the feeding tube all night and let her nurse all day. That will keep her supply up and keep her nursing so that once they figure out what is wrong you will still be able to nurse her. Nursing brings soooo much comfort to babies and she will need you for that... Is she still on a feeding schedule or do you offer her milk whenever she is whiny? If you offer whenever she is whiny as a first option she may eat more. If she is nursing for comfort that is still getting her to take in calories.

daysfancarlymanning · #6 March 14th, 2011, 11:13 PM

wow thank you both. I think you are right adn I;m going to tell my ped. The ped gi did mention upper endoscopy several weeks ago as a possibility. Isnt it "cheating" to feed her right before she's weighed though? I never realzed that a diaper could have THAT much impact on weight. Wow. So much I don't evn know

And I feel her as soon as she's whiny. I feed on demand, not letting her go more then 3 hrs inbetween feeds. Hopkins has a feeding clinic so I'm going to check into that too. When we were in hopkins a few weeks ago I saw a lacatation consultant and a feeding instructor and she said carly has a great latch and eats fine. that was when she was just bottle fed.

i3ai3ydanny · #7 March 15th, 2011, 10:16 AM

Yes it is cheating... I would also look into getting a baby scale if you can find one on like craigslist or ebay. If it has the sliders it is really easy to callibrate. If all the sliders are at 0 and the level isn't level than adjust it until it is. That will help you keep track of her weight at the same time each day and you could see a better pattern that way. You can request nude weight checks also. If they are weighing her with clothes or a diaper that is plenty enough to throw it off. If she has just peed a lot or hasn't peed yet that could vary by at least a few ounces. Danny was around 18-20 pounds when his diapers would change things that much...not an infant. So keep in mind that hers may be limited to a 3 ounce range instead of a 1 pound range. It just depends on how much she urinates at a time. A baby scale would also help determine diaper weights to see how much she puts out per diaper or per poop.

daysfancarlymanning · #8 March 15th, 2011, 12:48 PM

Update: well took her in and the ped scale said 9 lbs 10 oz! so like she gained 7 oz in 4 days? I think she had to pee and she pooped when we got home so how much does that add? lol Oh well! I was happy at least. I can go back to bfing her and she'll be ok. I felt like my ped doesn't even know us anymore and was only hafl there. really irked me. she didn't even know what was going on, half of it, and when I asked her to call the ped gi and tell her about her weight, she said she didn't know he number. I gave it to her but she won't call. I bet not. She didn't even write it down. I felt very frusrated after the appt. Like I got nowhere. I was afraid to ask questions for fear of taking up her precious time.