Torn

iVillage Member
Registered: 07-11-2011
Torn
10
Mon, 07-11-2011 - 11:51am
Hi everyone. I am feeling very overwhelmed. Me and my husband have very different opinion on what is the right thing to do when it comes to our daughter who was born with a cleft lip and palate. She has had three surgeries so far. Two as an infant and one when she was almost four. It took me two years to get him to agree to having her last surgery which should have been done when she was a little over a year old. We had some problems at the hospital which caused him anxiety about moving forward. She still has a small hold in the roof of her mouth and the palate does not reach the back of her throat which is important for her speech. They told us at her last appointment that she would need to have a pharyngeal flap surgery to fix the problem. This appointment was very hard bc the ent was being really rough with het to the point I said something to him. He got rude but when I showed him that there was s better way to go about handling her he saw I was right and apologized. Me and my husband were very upset seeing our little one so scared and stressed out. We were suppose to have an appointment a few month ago and my husband made me cancel it and a few months before that and he made me cancel that one as well. I think that one bad appointment should not keep us,from keeping up with her appointment. I just want to do what is best for my daughters future. I know I was right to push him for her last surgery and he even apologized for how he. acted but I just feel anxious thinking about having to go through all that over again. he gets so mad if I bring any of her. appointments up to him. I don't know what to do. I don't want him to resent me. I also don't want to feel. like I failed to do the right thing for our little girl. I don't think he wants to be this way I just think. he has a lot of anxiety about it all. wish it was easier. I donno what to do from here. feeling very torn.
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Registered: 09-12-2003
In reply to: myhearts123
Mon, 07-11-2011 - 12:46pm

we had kind of a similar thing. At

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iVillage Member
Registered: 07-11-2011
In reply to: myhearts123
Mon, 07-11-2011 - 1:29pm
I had read about possibly just redoing the original repair. I want to make an appointment with just the surgeon that did her palate repair. my husband really likes him a lot and I think he may value his opinion. I would like to just go back and do a second repair bc reading about that flap surgery didn't put ether of us at ease. It is so hard. her speech is pretty good most people understand her fine she just has a lot of air escape through her nose. She starts school this year and I am very excited for her. she is super smart and very friendly. I know she will do great. I just don't want her to get frustrated if someone doesn't understand what she is saying which doesn't happen often but does happen. I push my own feelings aside at her appointments but my husband has a hard time with that. He thinks it is so easy for me because I put on a strong face but it really hurts me inside. the appointment you talked about with your son sounds almost like how ours went but they strapped her down to clean her ears. out and she freaked out. she was real good for that scope up the nose though. she has always been that way about her ears. even at regular doctors visits. Sounds like you are on the same roller coaster ride. I just want to do all the right things to make sure she has the best quality of life possible and I want to be able to help my husband along. And comfort him. I want us to be eachothers support but it is such a touchy subject that it is hard to even talk to him about any of it or how I am feeling. I just have to tell myself that the Lord will point me in the right direction and everything will work out in the end. me and my husband have a great relationship and love eachother very much. this is the only thing that we don't always see eye to eye on. thanks for sharing your story with me.
Avatar for Cmmelissa
Administrator
Registered: 11-13-2008
In reply to: myhearts123
Mon, 07-11-2011 - 4:27pm
Your little girls health needs to come before your husband's. It's got to be very scary to see your daughter have to go through so much, but you need to do what's best for her future health and well-being. I think you should push to get her back to the doctor, surgery is only going to be tougher the older she gets. If you didn't like or were comfortable with the last ENT, get a recommendation for a different one. Maybe having a doctor that your husband trusts will help with his anxiety about the surgery.

(((HUGS))) I hope that you can get him to listen to you. As hard as it is, you have to be your daughter's advocate.

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iVillage Member
Registered: 07-11-2011
In reply to: myhearts123
Tue, 07-12-2011 - 9:09am
I know that it isn't about him. I think he is kinda selfish to make it about himself. I know that I am going to have to do what I know is right I just wish I could do it without conflict. when I went through this before it was very emotionally draining. He said a lot of cruel and hurtful things that I knew he didn't mean and he apologized for but have still scared my heart. All of our family members agree with me but no one wants to say anything to him about it and when they have he just avoids the conversation or says she is fine the way she is. Maybe he will come to his senses and realize that I was right before and I am right. now. mommy knows best. his thinking just doesn't seem right. I wish I could understand it. thanks for the hugs I need them. I don't have a best friend I can talk to just my mom and mother-in-law. I am just going to take a leap and try to talk to him. it is hard to find time to talk because we have our older daughter who is now five(she is the one we are talking about) and we also have a two year old who is always glued to me. I don't want them to hear our discussion. I already know that if I try to talk to him. he will say "are you trying to ruin my day" or "are. you trying to start an argument". it is what he always says to avoid talking about it. I guess that by saying that he is trying to make me feel bad so I won't keep talking about it. or who know maybe by some chance he will be different this time. God knows that is what I am praying for. if I wait to much longer I might go crazy inside. I feel like I am going to pop. I know that I will do the right thing for our daughter. thank you for your words. please pray for us.
Avatar for Cmmelissa
Administrator
Registered: 11-13-2008
In reply to: myhearts123
Tue, 07-12-2011 - 10:24am
He is saying that to guilt you into backing down, just don't let him. Would one of your family members be willing to watch the kids for a little while so you can talk about it? The other idea I had would be to just schedule the appointment and tell him about it in a very matter-of-fact way. I feel bad for you that you have to fight him over this, I've had to go through that before and know how awful it makes you feel :( I'll be thinking of you, stay strong!

 photo melissasiggy2-1-1.jpg

iVillage Member
Registered: 09-12-2003
In reply to: myhearts123
Tue, 07-12-2011 - 12:28pm

My DH and I don't see eye to eye on medical things. He is such a baby when it comes to his stuff yet the rest of us forget and don't get me started on when we no I went to get the ADHD diagnosis. After him nearly humilating me in front of the teachers at school I went behind his back and did it. Course he won't come out and say it but seeing the outcome he is the one hesitant about a drug free summer not me ;0

You just have to learn to stand your ground its hard, I was the one facing the teachers all the time so I felt I HAD to at least explore it. For his cleft stuff its a bit different because its visual you know there was an issue. Not saying somethings wrong with the repair just a cleft itself usually there is no question not like other things especially the ADHD there is not blood test to say yes this kid is ADHD its subjective in someways vs a cleft you looked at him when he was born and it was like BAM so that was easier in some ways. But men deal with things different now the visual is gone he may have gone into a denial so to speak. My dad was the same way he doesn't deal with illness well its a guy thing. Dh never hounds me to get this stuff done which can be an issue. I am in an avoidance phase I know the big one is coming up but if we just don't go to clinic it won't come which I know is not the case but then again I don't see the point of clinic every year for Liam, nothing changes we are YEARS away from the dental stuff so instead I pay $100 in co pays to tell me what I already know and hear year after year in a few years so skipping 1 while I deal with his other stuff is one thing but I know it NEEDS to get done and DH does too but he will NEVER say "hey isn't it time to see PS" thats just men

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Registered: 07-11-2011
In reply to: myhearts123
Wed, 07-13-2011 - 8:59am
iVillage Member
Registered: 07-11-2011
In reply to: myhearts123
Wed, 07-13-2011 - 9:17am
For the last appointment I did tell him in a matter of fact way and he seemed like he was going to do it. I even wrote it real big on the calendar and left the appointment letters out so he could see them. He knew I did this to remind him because he mentioned it to me. A couple days before the appointment he got sick. I guess sick with worry or something. He was so stressed about it that it made him physically ill. I hate seeing that it is all so hard for him. I just wish I knew how to help him along. I understand skipping unneeded appointments but I know in my heart as a mother that she would greatly benefit from this one. I have my daughters best interest at heart. I know that I have to talk to him soon and I will. Just wish it was easier. Thanks. Staying strong!
Avatar for Cmmelissa
Administrator
Registered: 11-13-2008
In reply to: myhearts123
Wed, 08-24-2011 - 4:21am

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Registered: 12-07-2011
In reply to: myhearts123
Thu, 12-08-2011 - 6:35pm
My son was born with cleft lip and palate as well. He is now 17 years old. Reading of the things you have had to deal with makes me feel very lucky. We never had to deal with those kinds of issues with the clinic we went to. Matt was always excited to see everyone at his clinic appointments. The only issue we ever really had with him was when he was younger he hated any doctor looking into his ears. I think that was due mainly to him having so many ear infections. Even now he is prone to getting them when he has a cold. He has had 11 sets of ear tubes and has some hearing loss at this point that does affect his speech a bit but other than that he has done very well. Hopefully everything works out as well for you. If you ever have any questions feel free to ask.