To help families who are getting started, please add things that you wish you had heard (or are grateful that you did hear) early on:
- Things get better. For many of us, the hardest day was diagnosis day, and the darkest, most despairing weeks were the ones that followed. Everyone's situation is different, and this is clearly a long road, but things do seem to have a way of working out. This sentiment is captured beautifully by a short gut mom's description of her son as living a life full of Little League, football, swimming, snorkeling, traveling, eating, and TPN.
- You are not alone. Even though you might feel alone at the start, there are amazing networks of short gut and TPN families out there, providing a wealth of support and information.
- You might need to act like you're alone, sometimes. As amazing as all the networks are out there, you may feel the need to put on blinders, to just focus on getting through your current situation. Don't think about the long-term future, don't think about other short gut kids. Just do what it takes to get through these moments. This advice came from Ed Barksdale, a revered transplant surgeon.
- Strangers may embrace you, while some of the people closest to you may withdraw. One of MaxMunakata's social workers warned us about this, so when it happened, it helped us to be able to say, "Oh, this is what Kerri was talking about." We realized everyone cared, but not everyone knew how to express it.
- You will become an expert at all this. No one believes it at first, but it happens.
- Don't Reinvent the Wheel. Having a problem with broken lines, bag leaks that never end, products or equipment that you don't like, etc, etc? Many other parents before you have come up with soluations to almost every problem you can think of, so post questions on the Short Gut or TPN Yahoo groups or email parents of kids whose have their contact info listed here (you may need to visit their webpage).
- You might have to fight for the best medical care for your child Having a medically ill child forces you to become assertive. Talk to any of the parents whose kids are on Omegaven. Or parents who were told there was no hope for their child and they needed to take them home to die. They have had to fight - with their origional doctor or insurance or home care. It's hard at first to think your child's current team might be offended or angry because you questioned their decisions or ask for a second opinion, but you need to do what you need to do for your child. Get second opinions, appeal the insurance companies.
- 'You need to trust your instinct as a parent. You know your child better than anyone - including the doctor.' Our favorite surgeon told me this as AustinRath was in the PICU on a vent at 3 months old. It started with Austin acting "off" at home and having a fever of 100.5. I called the on-call resident and described his symptoms. I said I wanted to bring Austin to the hospital to be admitted. Something wasn't right with him. The on-call resident said his fever wasn't high enough to be admitted and to stay home. I was a new mom and I trusted the doctor and ignored my instinct. By the next morning Austin was in really bad shape and was septic. We thought we might lose him. It was wonderful to hear Austin's surgeon tell me to trust my own instinct first, even when it meant challenging a doctor's opinion.
- 'Eventually, life goes on' - The social worker at our transplant parent education class in Pittsburgh said this to the class. She said eventually, coping with a medically ill child becomes routine and then life goes on - people have more children, go back to work, return to hobbies and resume a semi-normal life. At first I was offended by her comment. We were in crisis. How could life ever go on? How could any of this ever become routine? But she was right. After a while, each family and family member at their own pace, life does go on.
- It's okay to feel...(fill in the blank). It's normal to feel angry, resentful, sad, hopeless, frustrated and disappointed, especially in the early days. Finding other parents who have shared your experience of having a short gut baby can really help. We've been there and we want to be a support to you.
- Take care of yourself. A nurse in the NICU told me that caring about my baby must also mean that I care for myself. You need the basics - sleep, drinking, eating and a chance to get out of the house/hospital.
- The medical care becomes routine We video taped our ostomy nurse doing a bag change in the hospital because I was convinced I wouldn't be able to remember how to do it at home. I wrote out step-by-step (17 steps in all!) how to set up and hook up TPN, convinced I was going to do it wrong. We had alarm clocks set throughout the house so we wouldn't forget to feed him (actually I was so exhausted and stressed out I did forget without the help of the alarm clocks). Looking back, these things are now so second nature, so quick and such a minor interuption to daily life that it's actually hard to remember how overwhelming it once was.
- Your baby's condition is not their identity In the beginning, so much is focused on your child's condition and medical needs. But as they grow, their personality and all the "normal" baby stuff becomes the focus and the medical care and issues can blend quietly into the background. Pretty soon, instead of focusing on TPN, g-tube feeds and ostomy outputs, you start focusing on first smiles, Halloween costumes and first birthday parties.
- Ask for help
Professional Make sure you ask about Medicaid, SSI, what your the hospital/social worker can offer, and any help that is offered to parents while your child is in the hospital. Both Medicaid and SSI can take a very long time to get approved so the sooner you start the better. And it is amazing what hospitals/social workers can do for you. Some examples are: help with a place to stay, help with food, help with mortgage(No Kidding), professional counseling for you or spouse, and help managing all the information that you get everyday from all the doctors.
Friends and Family This can be the hardest thing to do. Many people around you want to help they just don't know how. And then after a while they will not even offer because they don't know that you will always need help. Ask for things like meals, taking care of your pet, parking vouchers or help with laundry. Even having some one come over to watch the baby for a bit so you can nap or have some alone time. You just have to remember to ask.
- Accept help People want to do something to help you. You need the help. Accept the help! Let people bring you dinner, help with shopping, clean, etc. When they offer say, "Yes." You can also ask a close friend or relative to manage all the requests and assign tasks.
- Resourse Handout for Families - Multiple resources listed here