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chronic mama roll call & updates

  1. MrsScallop

    persimmon / 1328 posts

    @Mrs Green Grass: thank you! I will let you know if I decide to reach out to her. It really can be hard to find the right people.

    @Mrs. Tiger: thank you! I have only said it to one other person, but I have thought the same thing about Charlie more times than I would like to admit. If we had lost him that day of his big crash (for lack of a better term for it), he would have been saved so much. It is nice to know I am not alone in that, as just that thought makes me feel so guilty.

    All four of his heart valves are malformed in some way, but his mitral valve is causing the most trouble. It is narrow/doesn't open enough, so it is creating a lot of back pressure to his lungs and likely his liver and GI system. This is dangerous for his lungs if it gets worse and can lead to more heart failure. The options to fix it are repair or replace the valve. Repair often doesn't work, especially when kids are small, and there are virtually no good replacement options for a kid his size. If he did get a replacement, he would need additional replacement surgeries as he grows and need to be on blood thinners which are hard to manage in kids. Basically all options are risky but it is inevitable that we will have to make a choice. He has an NG and seems to absorb his nutrients fine, but they suspect he is losing protein through his gut due to the blood back up from his heart. With his heart, breathing on his own more, and his increased activity level, he is probably also burning through calories like crazy and we just haven't figured out how much he needs while also accounting for his fluid balance/electrolytes being managed through dialysis. So yeah.... It is all very complicated. Charlie seems to generally feel great right now, so I hate knowing it will end one day and everything he will have to be put through. It almost feels harder than everything up until this point because he was getting better slowly. Now I feel like he can only get worse slowly.

    Sorry about the state of these responses! I am really just letting it all out.

  2. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @MrsScallop: man, we shut down the thread with our truthfulness! Oh well 😊

    Thanks for explaining the cardio stuff! Does that mean you're forced to choose repair, thus waiting for a valve to fail? That sounds so incredibly stressful. I hope they sort out the GI issues soon, it sounds like the bigger he can get, the better. I hope something changes and that things continue to improve for him, instead of the other way around.

    What are your days like now? Do you and DD hang out with him at the new facility all the time?

  3. MrsScallop

    persimmon / 1328 posts

    @Mrs. Tiger: well, either way I appreciate the ability to throw that all out there. It is good to get it out! And again, good to know we aren't alone.

    I think you are right that we will have to chose the repair, wait for it to not work, then try something else. It is stressful, but I am doing my best to let it go. But I think he may have finally grown a little! His last Dr visit had him just under 25 in, and yesterday we measured him at closer to 26 in!

    Our days are pretty similar to how they were at the hospital, just with a 40 min drive to/from home added in. DD and I get here around 10 am, hang out, play, help with therapy, then i do his bed routine plus dialysis set up, and go home around 10 pm.

    How are you all doing? Seems like D is getting so big and doing really well!

  4. Ms.Badger

    clementine / 918 posts

    @MrsScallop: I just wanted to tell you that I'm here for you whenever. I have had dark days and equally dark thoughts, and I'm here if you need to vent or confess or have a break-down. For me dialysis was so hard, pull too much, too hard and electrolytes are off, too little and (at least Lucas) was edematous and uncomfortable.

    Hugs and all my love to Charlie!

  5. MtnBiker

    cherry / 121 posts

    I must have missed this thread along the way... now is as good a time as any to join. You all are amazing. I don't have anything I think I can add to the conversation besides an introduction and where we're at.

    My LO was born with a cleft lip and submucous cleft palate - it was a surprise to us, we didn't get any indication during any of the ultrasounds. It did not go over well in the delivery room, but we've come a long way from those first few hours. We've had one surgery for the lip at 6 months, and a quick procedure to get ear tubes for hearing loss at 10 months. At this point it is a wait and see on whether or not he'll need palate repairs and further lip repairs. We've been told that his speech may be delayed, since he only really started hearing after we got the ear tubes.

  6. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @MtnBiker: hello and welcome! how old is your little boy now? There's a handful of mommas dealing with hearing loss around here, fyi. Also you may have seen earlier in the thread that @jhd: 's son also dealt (is dealing with?) a cleft lip/palate.

    I can relate on the speech delays! Early intervention services have been very helpful to us and D is much more vocal now at 28m than he was at 24m (although still delayed).

    @Ms.Badger: hey there stranger! how's J doing?

  7. jhd

    coconut / 8079 posts

    @MrsScallop: Big hugs to you, mama. Thanks for sharing the updates on Charlie. I hope that you will continue to share with us or others in your life when you need to. It's when you feel like you have to be positive for everyone else all the time. Thinking of you and your family.

  8. jhd

    coconut / 8079 posts

    @MtnBiker: hi! somehow i missed the updates on this thread. our little guy was born with pierre robin which meant that his jaw wasn't formed correctly and as a result he also had a cleft palate. we just celebrated 1 year post op for his palate last week. he had tubes put in at the time of the palate repair (8 months old) due to chronic fluid. now he's 20 months old and we're just working on his speech delay and keeping tabs on his hearing. our SLP isn't convinced that the delay is related to his palate / hearing etc. but there's nothing really to do but wait and keep working with him. how old is your LO now?

  9. MtnBiker

    cherry / 121 posts

    @Mrs. Tiger: 11.5 months today... where did my baby go? Glad to hear early intervention has gone well for you and D - I'm super impatient so I want to know now if we'll need to do speech therapy, the wait and see is hard...

    @JHD: We're closing in on a year old which is surreal to think about it. So far his tubes have made a huge difference in his hearing, it just got retested and he did a lot better. He's starting making more noise and he gets excited when sounds come out. Have you had to deal with insensitive comments? I've had extended family make subtle commentary about how it's terrible we're doing all these "elective cosmetic things" - it makes my blood boil and I don't know how to address it without completely losing it.

  10. jhd

    coconut / 8079 posts

    @MtnBiker: I'm sorry you have had to deal with insensitive comments about the surgeries. We haven't received any comments about his surgeries. The first two on his jaw were medically necessary ASAP because he just wasn't able to eat. Even once his jaw was repaired he struggled with eating. He had his palate repair with the same surgeon who did his jaw and the timing was based on his recommendation. Our families didn't question it, although of course we all wished it didn't have to be done! I have received a few insensitive comments about his speech, specifically once SIL told me he doesn't talk because I taught him to sign. Ugh! I think the ILs felt his sedated hearing test was overkill but I needed it for peace of mind and we did it based on the recommendation of a specialist we trust. They didn't question us though. I'm not sure how I would address comments but I know they would make me really mad! I tend to overthink any comments people make to me afterwards and never have a good answer in person.

    That's awesome your LO is making more sounds and having fun with it!! It's fun to hear all their little noises and sounds!

  11. DenverMom

    cherry / 196 posts

    I just found this thread, so I might as well join. All of you mamas are so incredible and reading about your struggles just breaks my heart.

    My DS Jacob is 3 yo and he was born with an absent right seventh facial nerve, meaning that he can't move the right side of his face. This has affected his eye because he doesn't blink all the way, so his eye waters a lot and there's constant concern about dry eyes and it affecting his cornea. The first year after he was born was REALLY tough because the doctors could not figure out what was wrong, so we had many visits with ENT, audiologists, opthalmologist, geneticists. No wonder I had late onset PPD. Since figuring out that he has no facial nerve we visit a children's plastic surgeon once a year and the opthalmologist every 6 months. Incredibly, Jacob is able to compensate for his facial palsy and he's had no speech or eating problems and has not needed any special interventions. The hope is that he will have surgery around 5-6 yo to insert a nerve into his face and hopefully be able to give his face some movement.

  12. jhd

    coconut / 8079 posts

    @DenverMom: hi & welcome!! All that uncertainty must have been so stressful! I'm glad to hear your LO is doing so well.

  13. MtnBiker

    cherry / 121 posts

    @jhd: I'm sorry about your SIL. Signing is never a bad thing, I really wish we taught LO, he gets frustrated often! I find both sides of our family to be in denial about the whole thing - whereas I'm a really honest straight forward person and tell it as it is. Before the tubes everyone insisted he could hear just fine, even after the test results and seeing him not respond to loud noises. It drove me crazy. He couldn't hear and that's okay - pretending it didn't exist seems very ridiculous to me and I don't know how to operate like that. We were lucky in that he and DH clicked in the first few bottles and he was able to eat, but after his repair, I felt so terrible - he ate so quickly and was so happy. I spent weeks feeling guilty that we made him work so hard for food the first 6 months!

    @DenverMom: Welcome! Glad to hear you have a diagnosis, and that LO is doing well!

  14. jhd

    coconut / 8079 posts

    @MtnBiker: fwiw we started working with "more" in speech and I was about to give up thinking LO would never want to sign when he finally got interested. It might not be too late to do a few! We aren't adding any new signs at this point as he seems content being able to communicate with the ones he has. It has to be hard dealing with family who are in denial about things. I guess everyone processes things differently, but it doesn't make things easy for you as the parent! I'm glad you are seeing an improvement with the tubes. That's really encouraging. Do you have anything planned for LO's birthday? We did a family party so less than 20 people but it was fun to celebrate how far he had come that first year!

  15. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @MtnBiker: omg seriously "elective cosmetic things" ?!! I've never had family talk crap about D's feeding tube but strangers have told me how nice it must be not to have to feed my kid

    @jhd: My ILs also liked to pretend nothing was wrong at first and constantly ask me when the tube is coming out. My FIL actually told me that if I had D in Malaysia (where they are from) the docs wouldn't have relied on all the technology (like ventilators?) and he would be better off with holistic/natural cures or prayer or something. At least my MIL countered that if he had been born in Malaysia not breathing and unable to breathe for 30+ minutes, they would've just said he was dead and not tried.

    @DenverMom: hello! sounds like you and Jacob have gotten into a groove! awesome that he is able to talk/eat around it, although I can imagine just waiting for the surgery would be stressful. Does he talk about it at all? I keep waiting for the day for D to ask me why he has his tube, or why he has to go to the doctor so much.

    +1 to teaching kiddos to sign, even at "later" ages. The absolute most useful ones (to me) are nodding yes/no! D learned "more" and "all done" pretty late but still regularly use them to emphasize his points, haha. Also you don't have to use official ones, just make up what works for you. We figured out signs for certain toys so he could ask for them more easily, for example.

  16. MtnBiker

    cherry / 121 posts

    @jhd: yeah, we're having a little party for him - so I'm hoping it goes well. He moved up to the toddler room at daycare and they have a set nap schedule which is basically the time of his party, so we'll see how he is... I'll have to try some signs, he is figuring out how to point...

    @Mrs. Tiger: Yeah. Fuming. I walked away. Who the f says something like it must be great not to feed your kid? People are insane.

  17. DenverMom

    cherry / 196 posts

    @Mrs. Tiger: @MtnBiker: @jhd: Thanks for the welcome everyone. Yeah, it is kind of stressful waiting for the surgery. There's two types of surgeries that J can get. One would be to insert a nerve under his cheek and connect it to the chewing muscle on the side of his temple, but that would mean that he would only smile when clenching his teeth. The other option is to insert the nerve and then thread it across his upper lip and connect it with the functioning nerve on the other side of his face. This second option will result in a more natural smile, but it involves two surgeries and about a one year recovery time. I don't know what we're going to do. Plus, neither of these surgeries will address his inability to blink, so the eye issues will remain. All that said, because he has been able to compensate with his speech and eating, I also kind of feel guilty about moving forward with surgery, especially considering the complications inherent with any surgery. I'm kind of all over the place still on what to do, but we have a couple of years still to figure it out since J is not eligible for any kind of surgery yet.

    He has not yet started asking questions about his face and he has not made any comments that he's "different." I worry about this. He is very outgoing and social - I wonder whether this will change once he (and maybe more importantly, other kids) start to notice his differences. Thankfully we haven't encountered any negative comments from others yet.

    @MtnBiker: I'm sorry you've received comments that you're doing "elective cosmetic things." God, people suck sometimes! We had somewhat similar comments from my parents early on discouraging us from doing all the doctor visits to find a diagnosis because "he'll just grow out of it." Well, actually no, he's not. It's frustrating.

    And, finally, another vote here for using signs. Any communication, whether verbal or signs, is a plus in my book.

  18. youboots

    honeydew / 7622 posts

    Well we had Ts appointment at Shriners Friday. It went about as well as I could have hoped, her legs are different enough to need intervention. Based on her projected growth she will have surgery around age 11 to stop growth (with screws) in the thigh of her longer leg so the other leg can catch up. She will need new X-rays later this year and be seen every couple years to check in. They said she should be fine but if she has problems we can get her a lift anytime. It was a team of 5- it's a teaching hospital. They were so kind and good with T. We went out to a nice lunch after since we were close to downtown. I'm sure the technology will change a lot in 10 years. Thanks for the support ladies.

  19. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @youboots: I'm glad her team was kind - that's SO important! how do you feel about the long wait for surgery? on one hand I can see it being nice to not be an immediate worry, on the other I can see wanting it to be over.

  20. youboots

    honeydew / 7622 posts

    @Mrs. Tiger: I feel happy to have an answer and optimistic that the technology will be even better for her in 10 years. DH has been concerned since she was born, he's really been her biggest advocate all along. Her ped was not concerned until 9 mo and I was find to wait and see what happened with her growth in the first year.

  21. mrsbubbletea

    nectarine / 2821 posts

    @youboots: kind of random... But I lurk on this thread when I see it (I am a peds nurse and I like to hear perspective from "the other side") and I randomly thought of you and DD today! Then just now I see you posted. Funny how that stuff works. I am happy you guys have a tentative plan and I think your outlook on where technology will be in a decade is spot on!

  22. youboots

    honeydew / 7622 posts

    @junebugsmama: aw thanks, it is really sweet of you to pop on and say hello. Thank you for the work you do, it takes a special person to follow the path of nursing.

  23. jhd

    coconut / 8079 posts

    @youboots: I'm glad the appointment went well! Good call to eat somewhere fun after. We try to do something fun when we have big appointments like that. I love your positive attitude and I think you are right. I would definitely expect there to be some advances in that technology over the next few years. I hope things continue to go well for your DD. Will she have follow up appointments?

  24. youboots

    honeydew / 7622 posts

    @jhd: yes, she will get a fresh set of X-rays this fall. Then a check in every couple years.

  25. jhd

    coconut / 8079 posts

    @youboots: that's great they will keep tabs on her, but that you hopefully won't have a ton of appointments.

  26. DenverMom

    cherry / 196 posts

    @youboots: I'm glad to hear that your appointment went so well! How old is your LO now? Have the different lengths affected her walking much so far? It's great that you will have checkups every couple of years, which will hopefully also help keep you abreast with new medical advances. Good luck and I hope things continue to go well!

  27. youboots

    honeydew / 7622 posts

    @DenverMom: she is 1 today! She's snoozing and I'm catching up online. She stands but does not walk. She walks along furniture and transfers, I'm guessing 14 months.@jhd: thanks for your kind words. I tend to be a positive thinker so it has not been too rough (yet) ill be a mess when she has to go under.


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