XP DHs stress is stressing me out (long)

lilredd888

I don't post on this board or TB at all much since having DD 3.5 months ago. She was 10 weeks early and severe IUGR weighing only 1 lb 10 oz. She has a heart defect called Tetralogy of Fallot that is actually 4 defects combined (however she only has 3 of the 4 defects, missing out one the worst 1!! yay for that!). She will have to have open heart surgery sometime. Because of the blood flow from her heart going into her lungs, it has been hard for her to things strenuous such as take a bottle and keep her temperature up out of the incubator. She has been growing, but sllllloooooowwwllllly. The cardiac docs wouldn't even consider doing the surgery until she was 4 lbs 7 oz = 2000 grams. She now weighs 4 lbs 12 oz and we are in "sufficient weight gain watch" mode with the heart doctors and the NICU. She has to put on an average of 20 grams a day each week. If not, that means all the maxed calories and maxed meds aren't helping her heart disease and she needs the surgery ASAP. I have been back to work since 4.5 weeks post-surgery so that I can make time for when she gets home either now and/or after the heart surgery.

My issue (ha, I have many but I will just throw this one out for now) is DH. He has been stressing and freaking out about her having surgery and really everything else DD/NICU/health related. He takes his stress physically. His back locks up, his shoulders hurt so much that he can't move, knees go insane, vomits. He is a normal whiney man when he is sick/laid up usually but lately has been over the top. For the last 2 months, he misses work 1 day every other week. Sometimes he gets there and has to be sent home. They are very understanding right now but how long can you push it? He does attempt to make the time up another day so I am no longer trying to scrounge up enough to pay bills. I just feel that I have enough stress on my plate (one being that we also have a 15 yr old neice who lives with us, good kid though, but requires time, money, rides, etc). I don't need to be worrying about whether you are going to keep your job! I want to tell him to suck it up! Find a way to move past it! He does have a documented bulging disc in his back and had surgery on his knees in high school. I know he is hurting physically and emotionally and we talk all this NICU crap out all the time. Sometimes we disagree and we have issues but he just freaks out at the thought of her having open heart surgery. I just want him to man up and I don't know how to tell him without humiliating him, pissing him off or stressing us both out more.

Congratulations if you have made it this far. I have lurked/stalked many of you and your posts and value your opinion. Um, and yes, you can tell me I am being a heartless ball buster.

Jenn

lilredd888

Thanks for responding. I am trying so hard to be understanding. Today I was just like, "Not again!". I tell him that it's okay and he has people to talk to. Unfortunately, 3 of my 5 bridemaids(all married to 3 of his groomsmen buddies) all had preemies. Their experiences are extremes though. One had a 6 day breezy stay, one died within 31 hrs, one stayed an uneventful 30 days. I think that we both need to talk to someone sometime. I know there is a support group at the other hospital for babies who need heart surgery.

jennifer1w

I am sorry you both are having to go through this. Sending prayers your way.

adrielegorburu

Im very sorry that you are dealing with this on top of everything else - let me share my experience with you - My DD was a micro preemie and for many months we were worried she wouldnt make it - I found that I delt with it much better than my hubby - (in my personal opinion I believe that woman are simply stronger emotionally then men - or more capable which ever is more appropriate for the situation) - We were offered counseling in the NICU - me for PTSD and us both for coping with the NICU - in a session he opened up about how difficult it was for him and I realized then that I had to stop being so hard on him and realize that it was in fact harder for him to deal with then it was for me.  He was confused by all the medical jargon, scared of all the possibilities and the most difficult thing for him to deal with was not being able to do anything about it.  It didnt help that he was afraid to touch the baby and hurt her, had very little experience with babies to begin with and with me out of work at her bedside the financial stress was overwhelming for him.  I'm not saying that you arent having a perfectly normal reaction - I believe you are - I'm only suggesting if you can get any counseling it can really help. I was able to make him understand what I was dealing with and in doing that I understood him much better - I changed the way I talked to him (especially about medical stuff) and found ways for him to be involved that werent stressful for him - (ie he was scared to change her diaper for fear of hurting her but I would always feed her (tube feed) - I changed so that I would always let him feed her and I would do the more physical stuff) - Please place a lot of importance on getting you guys on the same page right now - with all you are going through and will be going through with her surgery - you NEED one another right now.... I really hope it gets better for you soon and I'll be adding you to mine and DD's prayers at night (no offense if you arent religous but we make a habit of including any preemies that need help in our prayers)

lilredd888

I appreciate and welcome all thoughts and prayers for all 3 of us. I have been talking to him on and off for the last 24 hours to get some counseling and he is refusing. He says he talks to people (friends,family,coworkers) all the time. He says he'll be better and less stressed after her surgery. I told him that they could at least give him some extra stress coping skills. Not happening. He is still physically hurting this morning but at least he went to work. He lashed out at the parking attendent for asking to see his id bracelet (we have a free parking pass but for some reason they want to see our baby's bracelt sometimes as well). He said that we have been here for 4 months and you still need to see it?!? I don't know. All I can do is be there to say that it's ok. I am at a loss and don't need to added stress.