Help with Hubby

[Carinne]

My husband is having a hard time coping with everything that we are going to face with baby. Has anyone else gone through this? Any hints or help on how to deal with this? He has finally come to terms that there is going to be a problem with baby's heart (initially he said the dr's don't really know there is a problem, they just think there might be, don't worry about it, your being a hypochondriac, etc.). I have managed to get him to go online with me and let me explain what the doctors think the baby has, but after about 5 minutes he had enough and didn't want to talk about it anymore. I have yet to be able to discuss with him possible treatment options. He doesn't want to discuss anything that we are going to possibly be facing, and when the subject comes up he asks how we started talking about it and changes the subject. I need a partner to talk to about what's going on, and he's shutting down. What do I do? We have our first echo and appt. with the Cardiologist on the 5th, then we have an ultrasound, appt. with geneteic counselor, and appt with my midwife, all the same day. I'm afraid if I don't prep him a little for some things they may say, he might be totally overloaded and lose it that day. Help!

[SBAimee]

Carinne,

Welcome to the group. Having a child with a heart defect is a crazy, interesting challenge, but I think you will find this group to be a wonderful life line and a great place to find support. Hopefully your husband will come around soon and be able to give you the support that you need, but fellow Heart Mom's are the next best thing when you really need to talk with someone who gets it.

One suggestion I have for your husband might be to direct him to some of the blogs of children with similar diagnosis. It might help him to not feel quite so overwhelmed to learn about it a little at a time how it has affected other kids and their families. My computer is acting up at the moment so I can't direct you to any, but reading about other families really helped my husband understand what to expect.

It's all so overwhelming at first, but it gets better. Good luck, and keep us posted.

Aimee
Mom to Jack, HLHS, 17 months old
www.jacksonhardy.blogspot.com

[Alli and Kyle Hicken]

Carinne,

It all feels so overwhelming at first. I have had friends who struggled like you with feeling connected to their spouse after an initial diagnosis. I know it can feel very isolating, but remember that your husband is likely trying to process this all through in his own way right now. He might need to withdraw and pretend outwardly that everything is ok, but this might be his way of protecting himself from feeling vulnerable or worrying about how to make it all better. Give him lots of love and time. Breaking down after tomorrow's appointments might be a really great thing, and I can guarantee that the doctors you will be meeting with are very good at explaining and helping to handle the emotional struggle that comes with it all. In the beginning, it often feels like every appointment is filled with bad news, but eventually, it will become your new normal and the days get much easier. I promise. I agree with Aimee...reading blogs can be incredibly helpful. Feel free to look at our son Grant's blog. I began documenting in November 2008 right after our first prenatal diagnosis and though our journey has been difficult, Grant is thriving now at 9.5 months. If you want to look through the archives, please feel free...hopefully you will find it useful to see what happened on our journey and see if there are any parallels to what you are experiencing. You are not alone! Keep us posted!

Alli Hicken
mom to Grant (HLHS, TGA, TAPVR, etc.)
grantmeaheart.blogspot.com

[randall]

I struggled with the news our son would have a heart defect as well. Janalee, my wife, would break down and cry quite often but I never really had a 'break down'. The way I came to terms with it was by researching it as much as possible. I came to the realization that it was going to suck through the surgeries but I chose to focus on the most likely outcome, a relatively healthy child. Of all the heart defects out there Tetralogy of Fallot (what my son has as well) is very treatable with very high success rates.

Talking with others on this forum, and blogs has also helped a ton. You can check out our blog at randalljanaleefamily.blogspot.com (http://randalljanaleefamily.blogspot.com). You can read about our son Brennan who also has TOF.

-Randall

[Carinne]

We found out yesterday that rather than the hoped for diagnosis of tetralogy of fallot, our baby will be born with pulmonary atresia and a VSD. In our case, rather than having a narrowed main pulmonary artery, it is completely absent in our baby. Yesterday was a very long day for Adam and I- our 1st appt was at 8 am and we didn't get home until 4:30! We were absolutely exhausted when we came home, and Adam was very overwhelmed. He has started talking more openly about what we are going through, and his main concern now is what our child's life is going to be like with this condition.

[BraveHeart]

Carinne,

I know how you are feeling right now! My wife and I went through the same type of road that your now going down...our daughter is now 5 yrs. old and has the same type of defect that you have been given. If it would help I would be willing to answer any questions you may have...:)

Hugs,
Mike

[Carinne]

Carinne,

I know how you are feeling right now! My wife and I went through the same type of road that your now going down...our daughter is now 5 yrs. old and has the same type of defect that you have been given. If it would help I would be willing to answer any questions you may have...:)

Hugs,
Mike
Did your daughter need the shunt after she was born? How old was she for her 1st repair? How long until she needed another? How active is she now? Sorry for the multiple questions- these are just what is at the top of my list right now.

[BraveHeart]

She had the BT shunt or (stent) done at 4 days old, she weighed about 6.2 lbs at birth and after the surgery and a hospital stay of 12 days she left the hospital weighing 5.5 lbs. The first actual repair happened around 6 months old. She has since had 2 additional heart surgeries and is 5 yrs. old, she is as active as most children her age and loves dance and going to preschool.:D

I tried to call you the other day, but you didn't answer. We live in Riverton and I was thinking my wife and I could stop by and talk to you and your husband if you guys are up to it... just let me know. Although the journey through this world of CHD's is difficult, and the same diagnose can even have its differences:confused:...we might be able to help you along this journey, and I can talk to your husband from a guys view...???:rolleyes:

Hugs,
Mike

[momof2gr8kidz]

I had a vsd, complete av canal repair and mitro valve repair done on me 32 yrs ago and I am doing awsome. I also had to have an aorta stenosis done 3 yrs ago. My daughter also had the same thing she us now 8 yrs old. Good luck. It is hard at first expecillt fir the hybby's because it is not something they can fix. Just be patient with him but always try to leen on each other for support. Ps I have been a trialthlete for the last 4 yrs! My daughter also has as much energy as the other kids.