Hand to Hold's official blog
When we brought our former 23-weeker home from the NICU, we knew we had a long road of therapy ahead of us. After all, he was a 23 weeker, with bilateral grade 4 bleeds and at a high risk for developing CP. We knew he would need therapy. Before we left the NICU, we had [...]
Colostomy care. Not exactly covered in any parenting class. My son Caleb was born with VACTERL and required a colostomy at two days old. He had his reversal at nine months old. These are the tips and tricks I learned about colostomy care and bag changes. Always discuss any change to your recommended or prescribed [...]
It’s that time of year- family gatherings, gift giving, Christmas parties, and church services. The season of joy. But what happens when your medically fragile child is stuck at home, leaving you and your baby isolated during this joyous season? How do you answer those nagging questions from relatives eagerly awaiting to pinch those cute [...]
Truth be told, I have always been very organized. A useful skill after my son Caleb was born with VACTERL association as it helped us to better navigate his seemingly endless specialist visits, therapy, hospitalizations, surgeries, medications, and insurance. Read on for my best organization tips. [Read more]
Having a baby in the NICU is an emotional time for any parent. As a NICU parent, you are thrown into a completely new world. You are overwhelmed with medical information, insurance claims, emotional stress, and more, all while trying to somehow maintain your life outside of the hospital – other children, work, bills, etc. I have been asked by [...]
A friend of mine once told me: “Worrying is like paying interest on a debt you may not owe.” Which is true! It is a hard concept to put into practice as parents of babies whose lives are in jeopardy, but if we can allow ourselves to let go of the worry and the “what ifs”, even for a few hours, we create an opportunity for ourselves and our partners to focus on the day at hand. We should ask ourselves: What can we do today to be involved in our baby’s care? How can we show our baby we love him/her? What can we celebrate today? [Read more]
Last summer was the summer of hospitalizations. Prior to that, no one in my family had been hospitalized except the two times I gave birth and had to stay overnight. Last summer though, not only did I give birth to my son Caleb, but he also had a week-long NICU stay and three subsequent hospitalizations for several days each in less than three months. To say we were overwhelmed is an understatement. In that state of shock, which began in the NICU, we hesitantly (gasp!) asked for help. I am not sure what it is that made us feel ashamed in asking for help when we clearly needed it- perhaps we all want to seem like we are in control (though nothing could be farther from the truth) or perhaps we were afraid it was a sign of weakness. Lucky for us, family and friends stepped in to help when we sent out the SOS call. [Read more]
Bryce’s First Day of Daycare – March 24, 2011 Often times having a child with special needs means one parent stays home at least part-time to care for that child. This is the case in our family, where I have stayed home, worked from home and worked away from home between part- and full-time since [...]
This past May, Caleb turned one. A huge milestone as this was a big year for him with one NICU stay, seven hospitalizations, four surgeries, and three trips to Cincinnati Children’s Hospital where we travel for his medical care. We planned a big party to celebrate. Of all the things that go into planning a party, food was a major concern. [Read more]
I have never met anyone who, while in the process of trying to start a family would say “We’re going to get pregnant, and preeclampsia will set in at about 26 weeks along forcing us to have our child early; it’ll be great!” Nobody plans on having a pre-term baby. Alas it’s a prevalent part [...]
Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.