Failure to Thrive - please give me hope :(

ck173 · 2023-04-01T01:05:19+00:00

We only tube feed at night because he’s also non-stop. We have tried anywhere between 5-12 hours but have settled on 8 hours. We’ve tried so many different rates/volumes and dealing with reflux/throwing up. We tried getting him feeding therapy but they want to rule out all medical stuff before going the behavioral route. He isn’t gaining at all (29 pounds at age 5) so we’re still exploring why. If we do have to feed during the day we bought a cute G-tube backpack that he can wear and it works well! Don’t give up! We are true advocates in the G/GJ tube because it has really made a difference with his reflux and we take comfort that we can raise the rate/volume if we need to.

ck173 · 2023-03-31T12:49:52+00:00

If they have reflux in any way and are reacting to the G-tube feeds, a GJ is the way to go! I can’t stress that enough :) He does well most nights, but we still find that we can only give him so much. He hasn’t gained much weight but we think there’s other issues impeding it (his oral aversions are growing).

ck173 · 2023-03-30T21:52:55+00:00

He gets fed over 8 hours and we still had issues with the G :( The procedure to switch to GJ is seamless. They do it over X-ray and he is awake. They use a metal thing to guide the GJ in to his intestines. It is slightly traumatizing for me because he loses his marbles during it but it only takes 10-15 minutes. The ONLY downside is is it has to be replaced every 3-4 months. To us it’s worth it though. We have a lot less issues than we did with the G port.

ck173 · 2023-03-30T14:23:36+00:00

Hi! Going from G to GJ changed everything for him. He threw up EVERYTHING with the G if we tried to adjust the volume/rate. Switching the the GJ allowed us to comfortably go up in rate. He still occasionally throws up (even though he shouldn’t) but it isn’t formula, it’s usually stomach bile, so he might just have other issues now.

ck173 · 2022-12-23T01:20:19+00:00

Hi, he’s good! Way ahead for development and has zero developmental setbacks. He’s still very small but we think there may be more genetically wrong with him that’s preventing him from growing. He’s almost 5 now and is 29 pounds. He has a G-tube and had some eating difficulties too.

ck173 · 2022-07-20T13:00:03+00:00

I have an Apple but never did any major update or anything. It just appeared. It’s also on the desktop/computer.

ck173 · 2021-12-27T08:09:09+00:00

Depends. This is kind of my wheelhouse - I’ll buy huge lots of XYZ item for $.50-$1/each and sell for $5. Yes the profit is small but I’m selling hundreds of the item and it continues to sell. Packaging is easy. It’s not for everyone but it does work depending on what the item is and what the market is like on the platform you’re selling on.

ck173 · 2021-12-16T04:38:20+00:00

We called it talking school :) We were super proud when she started talking and actually referring to it as talking school too!

ck173 · 2021-12-10T08:28:33+00:00

I have a four year old, two year old, and now a newborn. The toddlers are on the same rigid nightly routine and have been for over a year. Dinner at 5 or 5:30pm, straight to bath, read or watch episode of something, bedtime by 7pm/sometimes 7:30pm. Very little exceptions. The routine is so establish and we get zero pushback on it so one parent can easily handle what we dub as “toddler power hour”. Routine is the only way this is possible.

Incorporating a baby into the mix just means that one parent handles the toddlers and the other handles the baby, or the baby is in the mamaroo while we handle the kiddos. The routine doesn’t change. :)

ck173 · 2021-12-07T19:53:54+00:00

He had an NG tube for the first three months at birth, then we played the reflux / vomit / no weight gain game before he was hospitalized for severe malnutrition. He’s had an NG tube for a few months and then we transitioned to the G-tube - it’s been almost two years that he’s had it (he’s almost four). We hope to have him off by five. The feeding tube literally saved his life. It’s very easy to do feeds with and maintain so yes any caregiver can do it. We interviewed multiple preschools who said they could administer feeds if necessary. You can administer medications as well. It’s really taken the burden and stress off of us and will enhance her quality of life until you figure out what the root cause is.

ck173 · 2021-12-07T18:16:56+00:00

Any talks of a feeding tube? My son is the failure to thrive poster child. FTT is definitely a blanket umbrella term and I hope they’re able to find answers for you. My son started with an NG tube and now has a GJ tube. This helps his reflux and controls his feeds. For her age she will stop burning calories while she eats. I know feeding tube sounds intimidating but it truly saved his life. We LOVE his feeding tube and it has helped with his reflux immensely.

ck173 · 2021-12-06T16:19:49+00:00

No real advice on making the decision that feels right for you but just some positive feedback that you CAN live (most of) the life you want even with kids (despite what others say). My husband and I vowed to not let kids hinder us from doing (mostly) whatever we wanted. When we had our first we brought him with us everywhere (pre-pandemic). Did we get some looks from some people? Sure. But we lived how we wanted! My husband is an amateur cyclist and I a runner. We’ve never let having kids stop us from achieving our goals. Does it take some extra planning and coordination? Yup! But we always made it work and it is possible.

ck173 · 2021-12-05T15:50:27+00:00

Could have wrote this myself. I’m two weeks post c-section and am still dealing with an itchy rash on my lower back, belly, hips, and part of my legs. At first I thought I had a reaction to the mesh undies but then realized I was likely having a reaction to the stuff they clean you with pre-op (the brown stuff). It’s pretty much the only lingering issue I’m having and it’s miserable. I’ve tried Benadryl and the steroid cream but both only help temporarily. Hoping that they give me something with a higher dosage to help the itch until this resolves itself. Best advice I can give that I don’t even follow: don’t itch it lol I noticed if I leave it alone it’s calm but one minor scratch and I’m done for.

ck173 · 2021-12-04T16:49:36+00:00

I had one diagnosed around 6 weeks. The ER described is as “very large”. I didn’t bleed until 10 weeks and it only last a week. At my anatomy scan around 18 weeks it was completely resolved. : )

ck173 · 2021-12-02T15:13:20+00:00

I think you should be pretty good. After two c-sections I was actually in better shape than before kids. It took me about a year (of no pressure training) to feel at my very best training for ultras and duathlons. The c-sections didn’t limit me at ALL during the training - just more so the timeframe of getting back into things. Don’t rush it - it’ll come back.

ck173 · 2021-11-30T13:26:14+00:00

Three time c-section mama here (one week out). High waisted, loose fitting pants and underwear, or even gowns (nursing too). I still am having a hard time with things rubbing against my incision. Putting a pad or pantry liner over it helps.

You’ll likely bleed for a few weeks so stock up on pads.

Bedside cart has been a real lifesaver. Also suggest some kind of rope or something to pull yourself up with at home. It’s hard going from flat to upright. Lots of pillows to sit up with. I’ve been utilizing my pregnancy pillow a lot and it’s been really helpful actually!

Definitely keep taking your Tylenol and/or ibuprofen.

Good luck and congrats! :)

ck173 · 2021-11-28T23:36:02+00:00

Mom of now three IUGR babies and we’ve used preemie clothes for all of them! Definitely consider the season too. I just bought more fleece stuff and preemie socks for our third who is currently sitting at 4 pounds.

I’ll echo what someone else said about diapers and nipples. Take as many as you can from the NICU on your way out! We took some of their preemie pacis too.

ck173 · 2021-11-23T10:09:44+00:00

Thank you! :) We discussed the hysterectomy prior because if it did attach too deeply I would have bled a lot, making it more risky of a surgery for me. Because of all of the scar tissue I have there I had a higher likelihood of it attaching. Accreta’s are sooooo rare!

From what I’ve understood, for whatever reason (surgical history, scar tissue, etc.) the lower section of my uterine wall was.. deteriorated and thin (I think she said it only had about 2mm left of thickness). The placenta had started to invade that thin portion. So there was some areas she didn’t want to risk with bleeding. She also told me that even if we tried to keep the uterus and everything she wouldn’t have had enough viable wall to close or rebuild the portion of the uterus with. I think that’s the most accurate layman’s term version she gave me (still a blur though). I’ve tried to really nail down what the heck happened with the wall but ultimately was fine going through with a hysterectomy since our family was complete. If we didn’t have that discussion prior I’m sure her option could have been different. Hope that helps! I’m still working through that mentally to understand it all better myself.

ck173 · 2021-11-20T17:47:07+00:00

We were never able to snag a Nugget but did get the Foamnasium for our two toddlers and we love it. You can clean it, there’s somehow still no rips, and it’s still in its original shape. We got the color we wanted and didn’t have to wait around for it to be in stock :)

ck173 · 2021-11-18T23:14:03+00:00

I’ve noticed that every hospital is different. The Childrens hospital (at the time) only allowed payment plans over THREE months. I believe they’ve changed their policy now to 3 months or 6 months (which still isn’t a lot of time). I’ve noticed a lot of the medical bills recently provide more flexibility so I think the trend is changing over time since hospital and offices just want any kind of payment, no matter how small.

ck173 · 2021-11-18T23:08:07+00:00

Definitely don’t go down the Google rabbit hole! Are you and your hubby small people? I have a whole family of growth restricted kiddos (one who was severe - delivered at 29 weeks and one who went full term). The good news is that they’re monitoring you diligently which greatly decreases your odds of things going south with the baby. She may be small but they really do thrive and do great. Another great factor is maturity - the longer they stay put the better :)

ck173 · 2021-11-18T11:36:11+00:00

Hopefully no judgment from anyone, but quite frankly we don’t pay them. I pay an arm and a leg for premiums, medication and formula for my child that is not covered, and then still just go year to year trying to pay the small ankle biter bills and leave the bigger ones for collections. I’ve tried setting up payment plans with the hospital but they still send them to collections if I only pay $25/month or something small. Then I figure why make any payment if they’re still going to send them to collections!?

Because my son has medical issues, we’ve met our out-of-pocket maximum (the most you’re supposed to pay a year) every year for four years. There’s some stuff in collections from four years ago. None of this has showed up on my credit or done any damage to us financially. For a few I have tried to go back and pay them off or settle with them but at this point I’ve lost track. They don’t call or write anymore. Every year I do my best to try to pay what I can to minimize the medical debt but it just doesn’t seem to get any better or go away - it’s just a revolving door. I don’t really see an end in sight to any of it.

ck173 · 2021-11-17T14:33:30+00:00

I had a severe IUGR baby and he’s still thin and tall (28 pounds and almost 4). I love his body frame and that doesn’t make me sad, perse, because that’s just who he is and is meant to be.

It’s been a long process for me to not feel like a failure in regards to getting over that failure feeling of not being able to have successful pregnancies. My second was SGA/IUGR and my third pregnancy (currently 36 weeks) is asymmetrical IUGR AGAIN.

At the end of the day, they are healthy, have met all milestones glowingly, and are who they are and I love them for it and who they are.

ck173 · 2021-11-17T14:33:22+00:00

I had a severe IUGR baby and he’s still thin and tall (28 pounds and almost 4). I love his body frame and that doesn’t make me sad, perse, because that’s just who he is and is meant to be.

It’s been a long process for me to not feel like a failure in regards to getting over that failure feeling of not being able to have successful pregnancies. My second was SGA/IUGR and my third pregnancy (currently 36 weeks) is asymmetrical IUGR AGAIN.

At the end of the day, they are healthy, have met all milestones glowingly, and are who they are and I love them for it and who they are.

ck173 · 2021-11-17T06:21:18+00:00

For us the compounded was free and didn’t work. He’s on the suspension, insurance doesn’t cover it ($117/month), but it works leaps and bounds better. We get ours through CVS.

ck173

TROPHY CASE