Hellobee Boards

@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.

@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!

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.

@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.

@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.

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.

@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!

@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.

@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!

@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?

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

@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.