Having trouble dealing, any thoughts, advice??

As many of you know my baby was diagnosed with a serious congential heart defect at our 20 week sono. To say I am not taking the news well is an understatement. While DH and I are trying to be extremely hopeful and positive, we are also worried, scared and devastated.

While my babies health comes first and foremost, I am also having a hard time dealing with the fact that I feel roibbed of the joys of this pregnancy. I am extremely scared all the time of pre-term labor and I know that even if all goes well and I have a "normal" labor he will be quickly taken from my arms and placed in NICU. I cannot get this thought out of my head.

Furthermore, we aren't the littlest bit prepared. I haven't purchased a thing nor registered. We do not even know where we will be living. We are "assuming" it will be best to stay with my father for awhile for help and the fact that he is closest to the hospital. Just the thought of the Babies r Us website makes me cry. My DH is not too interested in this process at all as he doesn't want to jinx anything. I have mixed feelings. There have been talks of a shower for me but neither I nor the girls planning it know the appropriate thing to do. Sometimes I think it is wonderful idea but feel guilty about wanting one just based on the seriousness of the situation and the fact that DH doesn't seem thrilled with the idea at all.

My DH and everybody else has been absolutely wonderful but I don't think him and everyone else knows how bad I feel everyday. A few weeks ago I mentioned how scared I was now to deliver and one of my family members answered with something along the lines of, "That should be the least on your mind right now." I felt so guilty for complaining.

I also have become somewhat of a hermit. I am frequently scared to venture out on my own and even if I am in DH's company and we go somewhere to socialize, it seems very awkward around other people right now.

Anyways, don't know if anyone else is having a high stress, tough time, maybe someone has some suggestions with dealing?

Actually just writing this I feel a little better.

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

hi,

i hope this maybe will make you feel better. i have a close friend who was born with a serious congenital heart defect and you'd never know it unless she told you. while she did have to have surgery after she was born, and another one when she was 3, today, 20 something years later she is fine and happy and bubbily, and as a matter of fact she just had a baby of her own.

and now with the health care advances since then, most likely in the long run, things will turn out just fine for your little guy.

my thoughts are with you for a safe delivery and for the health of your little boy.

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

Kathleen I am SO sorry you're feeling this way, its COMPLETELY understandable, though. There must be so much fear and anxiety for you right now.
But you sound like you're being SOOOOOO hard on yourself, that can't make it any easier??? I think one of the very first things is that you have to give yourself permission to feel what you feel, you know??? You are NOT a bad person/wife/mommy if you feel scared, anxious, anti-social, or ****** as hell!!! My goodness you have every right to feel this way, and trying to squelch it will just make it grow stronger!!!!

I think it might help just to find a supportive outlet, whether its here on the boards or IRL, can your docs recommend a support group for you, or put you in touch with parents who've gone through a similar thing with their DCs? It might be SO HELPFUL to talk to parents who are living with the problem day to day?
Sometimes I know my thoughts go directly to the "worst case scenario" and things can look pretty bleak. Most of the time what I imagined isn't anything like the actual event, and I feel bad for being so "gloom and doom" about it.

You may find that getting support frees you from some of the fear, and lets you enjoy this special time a little bit more? I really wish that for you, and I'll pray that the months ahead hold more joy and peace than you can imagine

Re: Having trouble dealing, any thoughts, advice??

it sounds to me like you are grieving, which it understandable, given the circumstance. you are grieving the loss of a "normal" no-worries pregnancy.

i don't think you need to worry about registering, seriously. people will be generous and give what they can, and whatever you don't get, you can buy while your baby recovers in the NICU - because your baby WILL be okay!!

i can't imagine all the thoughts that must go through your head every day. don't feel bad for thinking the things you do - and how dare a family member say ANYTHING like that to you!! you are being reasonable and worrying about ALL aspects of this rpegnancy - who are they to tell you what you should or should not be worrying about??

so many for you right now. lean on your DH, he sounds like a great guy, and you both need each other right now. screw being strong - just be YOU.

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

what you and your DH are going through is so difficult... I would probably have many of the same feelings as you under those circumstances.

For me, whenever someone I care about is ill, I educate myself on their illness as much as I can. at least for my personality, I feel more at ease when I know the odds of recovery, and the treatments/surgeries involved in the process.

I think you might feel better if you find out more.... you may not view this situation quite as much as a grieving / worst case scenario, and instead view it as a large challenge to overcome. That change in outlook may make you feel better

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

im so sorry you are going through this!

honestly, if you don't feel comfortable with having a shower, then don't have one until the baby is born. plenty of people have done that..

I would still register. I think I would try to have some normalcy and try to do the things i think i would be doing around this time.

and in the first few months, the baby can sleep in a bassinet in your bedroom. and you can slowly build up the nursery from there. all you will need is a bassinet and a breast.
and diapers of course.

anyhow, feel better and try to keep positive!!

Re: Having trouble dealing, any thoughts, advice??

I casn't imagine how this must feel but like AP said your baby is probably going to be fine with treatment AND medicine moves exponentially so by the time he is older and may need more treatment medicine will have caught up or surpassed the illness.

I know I don't have a worry free pregnancy. Unfortunately so many of us have suffered loss and worry and the innocence of just having a wild night and a healthy happy baby 9 months later. I worry every day interspersed with reassuring myself everything is fine. Can you do some visualizations? I know I have those for pregnancy and they are great. I use the ones from Anji online which I used all through my IVF cycle. Who knows maybe you can even improve your baby's heart problem. Anything is possible!

I think all the other ladies gave great advice. Try to relax, enjoy this free time. And definitely have a shower-your baby is ALIVE! And has a decent prognosis from what I remember when you first posted.

Re: Having trouble dealing, any thoughts, advice??

I'm so sorry you are going through this tough time. I can only imagine how you must feel. Just take it day by day, and make sure you focus on all the positive going on around you. Don't stress with registering...the baby just needs essentials to start off with and you can pick that stuff up a little at a time. Have a shower after the baby is home and you are more settled if you aren't up for it now.

Take time for yourself and DH. Ask friends for help. Talk about it and never ever let anyone make you feel guilty for expressing how you feel about anything!!!! You are allowed to worry about the birth and everything in between now and then just like the rest of us. Like LB said, it sounds like you are grieving and I think that is totally normal. Maybe you can talk to a therapist or social worker to help sort through some of the emotions?

All the best to you, dh, and your little man! I often find that those with the biggest adversities come through with the strongest character.

Message edited 6/13/2008 3:00:49 PM.

Re: Having trouble dealing, any thoughts, advice??

Thanks everyone for the words of advice/support!!!
I had a long talk with my sister today and she was great in putting things in perspective.

I am going to try and work on treating this pregnancy as the enjoyable experience it should be, albeit difficult as it may be.

Maybe by my due date I will have the hang of this!!!

I think it is hard enough to go through a pregnancy with all the worrying/hormones, I am just trying to maintain a level of normalcy.

Thanks again.

Re: Having trouble dealing, any thoughts, advice??

Kathleen, I think of you often and while I'm sorry that this is so hard for you, I'm glad to see an update. I think you got some great advice, and I believe in the power of positive thinking. I am praying for your little guy!

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

I dont even know what to say. I feel like I would feel the same way if I was in your situation. I for you to have the baby at full term and have a normal delivery. I truly hope all goes well after that

Re: Having trouble dealing, any thoughts, advice??

Re: Having trouble dealing, any thoughts, advice??

Take your time! There's no right way to feel or anything you
'have' to do. Things have a way of taking care of themselves. All of your feeling about you precious gift of a baby are legitimate. I am sure your birth experience will be better than you imagine, the staff will go out of their way to care for you and your baby.

Message edited 6/14/2008 4:14:26 PM.

Re: Having trouble dealing, any thoughts, advice??

I am so incredibly sorry you are dealing with this during what is supposed to be an exciting and happy time. Pregnancy is nerve-wracking enough, but to have the added stress you have must be agonizing.

Allow yourself to grieve the loss of a "typical" pregnancy. Its the healthiest way to deal with stress. Is there anyone you can talk to therapy-wise?

Don't worry about registering if you don't want to. MANY people don't register. Your family and friends will get you what you need. Perhaps to make it easier for you, register from home (I did). I never felt the need to go out to the stores and do the walk around BRU with the *gun*.

You absolutely deserve a shower! Regardless of the situation- you and your little one should be celebrated. ESPECIALLY considering he's starting out his life fighting for it.

I have such faith in medical technology nowadays within the NICU setting. It is unbelieveable what can be done. Plus, the support you'll receive there (from doctors, nurses, as well as other parents) will be overwhelming.

Many, many prayers and hugs to you and your family during this time.