Confused & Need Support

A place for those bereaved to receive and offer support

Confused & Need Support

Postby pcs21609 » Thu Jul 08, 2010 11:22 pm

I am new here and a little nervous...so here goes... My husband and I had our first child (a girl) at 32 weeks gest after ttc for over 4 yrs. I had preterm labor. She is now a healthy 3 yr old. In Feb of 2009 we had our second baby, a precious son, Cameron. He was born at 24 wks gest due to severe preeclampsia. Cameron went through all the ups and downs that most babies born so prematurely go through (PDA ligation, etc.) After 4 months in the NICU he had progressed to nasal cannula (high flow) but drs were unable to wean o2 anymore and he actually began to backtrack. When he was in complete resp distress we were told our only option for Cam was a tracheostomy and subsequent g-tube. We were devastated. Within days of the operation, Cameron acquired an infection and we nearly lost him 4 separate times. Days later, we got the terrible diagnosis - Cameron had pulmonary hypertention of prematurity. They said that it would likely be terminal and that Cameron would require too much care to ever be able to take home. After learning his care and applying for various licenses, etc. we brought our incredible little boy hom in September of 2009. He still had a trach and a g-tube and was on a ventilator. But he was absolutely alert, aware, - truly a very loving baby. Shortly after bringing him home Cam got another infection (he never went a week at home or in the hospital w/o one) and had to be readmitted. In October of this past yr, our precious brave little boy succumbed to this awful illness. I have created an organization in his memory - http://www.projectcameronsstory.com/ My husband and I are obviously still struggling with this loss...my daughter spent every day playing with and bonding with her brother. So in addition to our own grief, we are also dealing with hers. My question is this...my sis-in-law just had a baby (a boy). I am so happy for her..I visited the baby when he was born, attended his baptism, etc. But our in-laws seem to resent the fact that we are "pulling away" from them. I admit - we are trying to redefine ourselves as a family and have some significant issues with crowds (and yes - to some degree, babies in general). My mom-in-law went so far as to criticize my husband for not agreeing to be the child's godfather, saying it was an honor and he should have accepted. Basically, I feel like they are very frustrated with us. And I feel that their "expectations" are weighing very heavily on us. I feel as though they wish things could just be the way they were. This is so hurtful to us especially since they were very loving to Cam and I know that they love and miss him too. Are we wrong to pull away from family gatherings (esp on holidays)? I am not saying we are doing everything right, but why can't we just be allowed to BE who we are and DO what we need to do to be able to survive both separately and as a family? What am I missing here? Any suggestions?
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Re : Confused & Need Support

Postby l412angel » Thu Jul 08, 2010 11:51 pm

So sorry to hear of the loss of your sweet Cam. :(

Your so not wrong to pull away and there is no right or wrong way to grieve. Family needs to realize that you and your daughter and husband need to do whats best for all of you. Sometimes its just so hard for families to understand that. Mainly because they do not like to see us hurt. They want us to be better. We will never be better. We just cope with our new normal. (((HUGS)))
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Re : Confused & Need Support

Postby l412angel » Thu Jul 08, 2010 11:56 pm

I just watched your video and read your website. So beautiful. I am so heartbroken for you!
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Re : Confused & Need Support

Postby pcs21609 » Fri Jul 09, 2010 00:19 am

Thank you. That means a lot. There are actually 3 videos on the site...wondering which one you viewed? I was so honored to be Cameron's mom, if just for a short time. If you don't mind me asking...is your angel-baby a girl? What is her name?

Thank you also for your response. I have always had such a good relationship with my in-laws...but now that they appear to be mad at us, I am beginning to feel resentful. I know that others who have never been through this can never truly understand, but really... I know that if the shoe was on the other foot, I certainly would never judge anyone about how they are grieving... that just doesn't make any sense to me...sometimes I am sad about this...sometimes I get very angry...other times I feel guilty...the guilt is the worst...ughhh. Thank you so much for taking the time to respond! I sure do appreciate it!
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Re : Confused & Need Support

Postby sam10 » Fri Jul 09, 2010 01:11 am

I am so sorry you lost your precious little boy! It is such a difficult situation to be in and what makes it especially hard are often the expectations of those around us. I have found it extremely surprising how some people have reacted and what they have said to me.

Allow yourself and your family all the space and time you need to grieve and live your new normal (as Laura calls it), even if you need to stay away from family gatherings or holidays.
Your little one is in my thoughts!
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Re : Confused & Need Support

Postby m » Fri Jul 09, 2010 01:46 am

You are in a tough situation. I agree with L412Angel - often, family members just want us to be better and think that they can nudge us in that direction by encouraging (or insisting) us to do things that they think are good for us. There have been a few times where I had to explain (nicely but very firmly) that we are doing what is right for us and that it is not helpful to push us to do things we don't want to do. I have had the same feelings - anger that I had to deal with such pettiness at such a difficult time and sadness that our relationship had to be affected in this way. I sent a few carefully worded emails to explain things to a few people who needed to back off.

You are not wrong at all to avoid family gatherings or situations with babies. That is very normal. It's difficult to be around everyone else's happy, complete families when yours will never be whole again.

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Re : Confused & Need Support

Postby sam10 » Fri Jul 09, 2010 01:47 am

I just visited your web-site and I really like reading about your bookraiser.
Also, me and my husband donated books to the NCIU where Henry lived. Even if we never had the chance to read to him (he only lived for one week), this is what we already had in mind for Henry's NICU time. I believe it helps so much to bond and calm your baby and yourself.

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Re : Confused & Need Support

Postby l412angel » Fri Jul 09, 2010 12:06 am

My angels name is Cara :) I viewed his coming home video :)
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Re : Confused & Need Support

Postby brianned5 » Mon Jul 19, 2010 06:57 pm

I'm so sorry for your loss.
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