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Chronic roll call!

  1. jhd

    honeydew / 7619 posts

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

  2. anonysquire

    cantaloupe / 6903 posts

    I don’t know if my baby fits the description, but hopefully it’s ok if I join you all. My son has dwarfism and is considered medicallly fragile. He will be starting his daily injections of growth hormones soon and they will stop at 18. He also has sleep apnea. He’s 14 months and 12.5lbs



  3. Jennibenni

    clementine / 805 posts

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

  4. anonysquire

    cantaloupe / 6903 posts

    @Jennibenni: thank you! He’s an angel! And we got Easter pics done and I was so pleased with the set up!!

  5. yellowbeach

    persimmon / 1003 posts

    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.

  6. Bluemasonjar

    kiwi / 655 posts

    @Mrs. Tiger: It has been a crazy year to say the least! I am ready to get this last surgery over with but also know that being back in the hospital will likely trigger a lot of feelings and with pregnancy hormones I'm just not sure how I will react.

  7. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @anonysquire: welcome, he's so adorable! Will you give him the injections yourself?

    @yellowbeach: Thanks for chiming in, how old is she?

    @Bluemasonjar: I know what you mean, I hate going back to the hospital!

  8. yellowbeach

    persimmon / 1003 posts

    @Mrs. Tiger: 13 months

  9. jhd

    honeydew / 7619 posts

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

  10. jhd

    honeydew / 7619 posts

    @Bluemasonjar: it is so hard to go back to the hospital. I hope things go smoothly for you. ❤

  11. jhd

    honeydew / 7619 posts

    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.

  12. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @jhd: great to hear! Glad he's on the vent and can just be zonked out. Whenever they extubated D too early after surgery he seemed to be in quite a bit of pain.

  13. TemperanceBrennan

    pear / 1976 posts

    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?

  14. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @TemperanceBrennan: my uncle has celiac and manages doing gluten free (and has before it was trendy!) Waiting for results stinks. Have you thought about cutting down on gluten in the meantime? Is her weight ok or also not keeping up?

  15. tbuzz

    grape / 99 posts

    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.

  16. motherunner

    coffee bean / 32 posts

    Hi all! I’ve been lurking and @tbuzz your post inspired me to say hello. I have twin 3yo who were born at 23 weeks and both have g-tubes and chronic lung disease. One has had more respiratory challenges than the other but thanks to lots of therapies both are thriving. One still gets PT, OT and Speech (feeding) and the other has graduated to just feeding therapy. Currently we only use the g tube at night.
    @tbuzz how old is your daughter and where are you in feeding/g tube balance?
    One of my girls has struggled to gain weight but has a sensitive stomach and pukes quite a bit (g-tube honestly doesn’t help if you can’t keep it down!) and the other has more oral averion so she is still learning to chew and handle textured foods. She was intubated for an extended period of time and was never able to take a bottle so is still catching up. Glad to have this post to connect and support others if possible!

  17. luckygirl

    coffee bean / 35 posts

    @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.

  18. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @tbuzz: @motherunner: can't tell you guys how nice it is to have other tubie mamas on here. 4 years ago I was the only one on these boards!

    @motherunner: did your daughters also get the nissen? D's has loosened (he can burp and throw up now) but I think it must have helped earlier on. D still also has way lower mouth sensitivity than I would like (will stuff his face like a chipmunk and then be unable to handle everything) so I feel you on the chewing issues.

    @tbuzz: So glad my posts were helpful to you! Also curious how old your daughter is 😊

  19. tbuzz

    grape / 99 posts

    @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.

  20. TemperanceBrennan

    pear / 1976 posts

    @Mrs. Tiger: Her weight has dropped a tiny bit, but nothing compared to her height. We are reducing gluten a bit, but it needs to be in her system to diagnose it and haven't gotten any direction from her doctor yet.

    @luckygirl: Thanks for your insight! I've tried to stay busy doing research on Celiac. I know it is relatively common (1 in 100) and there are lots of communities and resources out there. I'm just a fixer and want to know/have a diagnosis right now. I didn't think about asking to be on a waiting list for a cancellation for the specialist. I'm really thankful we live in a city with access to lots of specialists and that DH and I have enough flexibility to drop things and head to an appointment if necessary.

  21. ValentineMommy

    pomelo / 5784 posts

    @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.

  22. Ms. RV

    pear / 1519 posts

    So between me being pregnant with a baby with CHD and DD needing tubes, I will have officially met my deductible after DDs cardiologist appointment on Thursday. Yay....

    Side note.. any one ever switch specialists? I am thinking it might be more convenient if DS and DD have the same cardiologist, which they currently don't.

  23. Bluemasonjar

    kiwi / 655 posts

    @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.

  24. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @Ms. RV: we changed GI practices when D was turning 3, so so so happy we switched, new practice is better logistics wise (apts are held on time! They communicate via email!) and I agree more with the plan of care.

  25. Ms. RV

    pear / 1519 posts

    @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.

  26. motherunner

    coffee bean / 32 posts

    @Mrs. Tiger: She didn’t end up getting a Nissen and in retrospect that probably would have benefited her early on. The surgeon did not automatically give a Nissen with g-tube and by the time we made our way to the (unhelpful) GI specialist we felt ok managing. GI basically wanted to elimination diet allergy test her for everything first and I wasn’t willing to give up all the foods she would finally eat and keep down at that point. Now she takes A medication doe motility as well as appetite stimulant and one that is supposed to help with vomiting. Meals are still a challenge and we try to keep it positive and look how far we have come!

  27. motherunner

    coffee bean / 32 posts

    @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!

  28. jhd

    honeydew / 7619 posts

    I haven’t been able to reply to everyone, but I’m glad to see this thread, although I wish we all didn’t have to deal with these issues!

    I’m struggling some today. Baby G is on day 7 of a 10 day course of antibiotics due to NEC. He finishes his turns of his jaw distractors on Thursday, but then the hardware has to stay in place for 2 more weeks. The hardware makes it hard to hold him and all I want to do is give him snuggles and make everything better. Just need a safe place to vent for a moment!

  29. Mrs. Tiger

    blogger / nectarine / 2995 posts

    @jhd: so sorry to hear about NEC! Jaw hardware does not sound pleasant, poor bubba, that's a lot to deal with hang in there mama, you'll make it through!

  30. jhd

    honeydew / 7619 posts

    @Mrs. Tiger: thank you! ❤️ Today is better. Got one of our favorite nurses!

  31. luckygirl

    coffee bean / 35 posts

    @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.

  32. mrsbubbletea

    nectarine / 2683 posts

    @jhd: how are you guys doing?

  33. jhd

    honeydew / 7619 posts

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

  34. Ms. RV

    pear / 1519 posts

    @jhd: How are you guys doing?

  35. jhd

    honeydew / 7619 posts

    @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!

  36. Ms. RV

    pear / 1519 posts

    @jhd: That is great news!!! What a relief that he is eating and gaining well.

    I am being induced on Friday at 39 weeks just so it is easier to manage his care (since he will be transferred to another hospital). At an u/s three weeks ago he was estimated 6 lbs 10 oz so he will definitely be a good size for his surgery.

  37. jhd

    honeydew / 7619 posts

    @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!

  38. Ms. RV

    pear / 1519 posts

    G is here and had is heart surgery. It turned out that he needed aortic augmentation, not just a coarctation repair. So far, there are no immediate worries about his heart.

    But OT decided they wanted a neurology consult because they thought G had a seizure. They did an EEG today. I saw his entire appointment with OT and have no idea what they thought was a seizure, and I will be very surprised if the EEG picks up anything.

    The big issue now is eating. He has an NG tube because his left vocal cord is paralized, causing him to aspirate in the slightest. During his swallow study today they thought it was his larynx's fault and they want him scoped again. Vocal cord paralysis is very common with heart surgery so I really hope that is all that it is because that will get better with time.

    Good news is that if all he has is feeding problems that we will be recommended for a transitional hospital where OH and I could stay with DD until G would be discharged.

  39. jhd

    honeydew / 7619 posts

    @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.

  40. ValentineMommy

    pomelo / 5784 posts

    How's everyone doing?

    DD has officially been diagnosed with Stickler Syndrome, and tomorrow my two boys are being tested as well. Please keep us in your thoughts....it's been a tough time.

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