Hellobee Boards

@Mrs. Tiger: I might take you up on that! I so appreciate your willingness to share!

@anonysquire: He is adorable and so is that photo setting!!

DD has communicating hydrocephalus with a VP shunt. She recovered from surgery well, but has some motor asymmetry. We are working with PT on that though, and I feel like she's making progress.

@anonysquire: welcome! Of course you are welcome! Love that pic of your sweet boy!

G’s surgery went really well. Just got up to pump and called to check on him and he’s resting well. He stays on the ventilator until Monday afternoon. Jaw distraction process starts this morning.

Dipping my toes in this board, hoping to get some advice. My daughter has been crossing her height chart curves (started in the 80th percentile, now at two she is 13%). I am 5'11" and DH is 6'4". She has no other issues and has been a happy and healthy baby. Our doctor ordered blood tests and we meet with an endocrinologist and gastroenterologist in the coming months. The test came back a bit wonky and they are retesting to verify the results (there were a few tests where she was high in one thing and low in another and having those results together is very uncommon). We are still waiting on those results, but her tTG-IgA came back positive, which means it is likely she has Celiac disease.
All this to say, I know celiac disease can most likely be managed by a gluten free diet, but we don't meet with the gastro until May. It's killing me to keep feeding her gluten if she does have it.
Does anyone have any tips to deal with waiting and uncertainty?

Hi all. My daughter has a gtube. She also has ASD which at this time only requires yearly monitoring. She also has chronic lung issues which require twice daily nebs when healthy. We get twice weekly feeding and physical therapy and will soon be adding speech to the mix. She’s come a long way for being born at 25 weeks.
@Mrs. Tiger: your tubie posts were very helpful.

@TemperanceBrennan: We have had to wait for test results and specialist appointments many times. I’m usually able to put it out of my mind at first and not think/worry about it as much. But then the closer we get to the date of receiving a test result I start to get pretty antsy. During those waits I have found it helpful to try to do something else related to helping with my son’s health - whether that’s making some calls to other doctors who I’ve been meaning to check in with, scheduling other appointments, adjusting something with his diet or sleep – it helps me to feel better if I can accomplish something else positive towards his health, channeling my worrying energies elsewhere, if that makes any sense.

I do also start calling a few days early to see if the results have been received yet (sometimes it can take time to track the results down as well). Or if we’re waiting a long time to see a specialist, I often call to see if they happen to have a sooner opening, or if we can get on their waiting list.

@motherunner: @Mrs. Tiger: she’s 17 months. We got our gtube/nissen a couple of weeks before we discharged from the NICU (we were there almost 5 months).

@motherunner: we’ve just started to wean feedings so she will consume more by mouth. She was intubated for an extended time, too and had an extreme oral aversion. She wouldn’t let anything near her mouth. We’ve come a long way.

@TemperanceBrennan: We've been waiting for many specialist appointments and test results off and on for the past few months. It's hard - I definitely fall down the google rabbit hole during periods of waiting. And while it doesn't help my anxiety, it actually has come in useful educating myself in the medical possibilities and preparing myself for things. That probably doesn't help, but I just wanted to respond and tell you you're not alone.

@Ms. RV: Yay on the deductible! lol We are almost at our out of pocket max even before DS goes in for surgery next week. I am so tired of all the big medical bills. I switched jobs last year and we hit the out of pocket 2x.....

I would switch cardiologists to keep things more streamlined especially since I think you said your DD only needs a yearly echo. We changed GI doctors pretty early on and it was an easy transition to a much better practice.

@Bluemasonjar: Oh wow. I can't even imagine hitting my out of pocket max... though I probably will hit it this year! Ouch on having to hit it twice.

@Mrs. Tiger: @Bluemasonjar: Thank you for the feedback on switching! Both cardiologists are in the same practice, because there is pretty much only one in town. I like DD's cardiologist better, but that could just be because DS's might be better dealing with patients that are actually born.

@tbuzz: I think 18 months or so was a big turning point for one of my daughters. It helps when they start to have an interest and variety. It is certainly a slow steady process with oral aversion but I have tried journaling updates about once a month to watch progress and that has helped!

@jhd: I’m sorry that you have been having a rough time. It must be stressful for you all. Glad to hear that today is a bit better! Please keep us posted as to how you, Baby G, and family are doing.

@mrsbubbletea: making progress little by little! Thank you for thinking of us!

@Ms. RV: thanks so much for thinking of us! We have been home 3 weeks now. He’s been eating and gaining so well and only needed an NG tube for the first week. We have some follow up appointments at the hospital out of town in a couple weeks but our pediatrician was so pleased with his progress he said we don’t have to come back until his 4 month well visit!

@Ms. RV: how are you? You must be getting close to baby time!

@Ms. RV: I hope your induction goes smoothly. I will be thinking of you and your family. And please reach out if we can support you in any way. That’s great news baby is a good size!

@Ms. RV: I’m glad to see your update. Been thinking of you! I hope that those tests find nothing to be concerned about. Is the other hospital closer to home? I think you have a bit of a drive if I remember correctly.