by pcs21609 (2 Posts), 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?