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Tuesday
Jan102012

Advice for parents

Advice for Parents - Kara Davies, Julia and Evan's Mama

Having your child die before, during, or shortly after birth is a horrendous, traumatic experience. I've lived through it twice (2nd trimester miscarriage resulting in stillbirth, and neonatal death) and the following is a list of things I've learned and wish I was told during my time in the NICU (Neonatal Intensive Care Unit). This is a suggestion only.

DO'S

-Ask to hold your baby whenever possible. This may be awkward at first, you can do it. More than likely, your arms will ache to hold your baby.

-Ask for baby's father to hold baby whenever possible.

-Ask that your baby remain in room for any procedures that may need to be done.

-Ask for all the paperwork required in getting a birth and death certificate. Depending on the age of your child at birth, you may be refused a birth certificate. (It's wrong, I know and there are plenty of people out there fighting for all children to be issued a birth certificate!) Demand that you get official documentation of your child's existence. I do not have any documentation that my daughter Julia Rose existed and it kills me.

-After your child is born and you've had a first cuddle, ask your doctor or midwife about medication to stop your milk from coming in. If your child isn't going to need your milk, you may want to express and donate it to a milk bank if there's one in your area. I personally couldn't handle the thought of my milk coming in and it going to waste. I had a friend ask my midwife about this and I was given a tablet that stopped my supply from coming in. I was warned that since it was past the 24 hour mark that it may not work. Luckily it did and I am grateful. It's a daunting thing to ask about but one that may save you from more heartache.

-Ask that staff explain all procedures and tests being done to your baby. Keep a journal at your bedside or baby's bedside to write down the questions that arise in the middle of the night.

-Ask that guests write a message to baby in your journal.

-Ask that staff take photos of your baby when you're not in the room.

-Ask staff to keep mementos of your baby's time in hospital and to give them to you when you're discharged. Ask for hand and footprints, a lock of hair, baby's ID wrist and ankle bands, the blood pressure cuff or other items used in your child's care.

-Ask for a copy of your baby's record and yours for your own keeping. And for when you try for another child, your doctor may want to see it. Keep it in a safe place.

-Take a photo of all involved in your baby's care. You may want to show this picture to other people later.

-Ask staff to call a photographer from Now I Lay Me Down To Sleep to come and document your family as you are. You may want to have a photo of your child in your home, you may want to keep them in a safe place just for your own viewing. We had a photographer come in and take photos of us with Evan and they are priceless. There is a definite difference in our photographer's photos and our photos and it's nice to have someone else take over what we called "papparazi duty".

-Spend as much time as possible with your child.

-Sing to them, rock them, read them story books, introduce them to a stuffed toy, wrap them in a special blanket, introduce them to their siblings and have them hold their baby brother or sister (and take a picture!), introduce them to their grandparents, aunties uncles cousins, all family who are available. Even if they are already dead, do these special things as this is the only time you'll have with your baby.

-Ask staff if you can bathe your baby and ask for them to assemble bathing supplies. Every new parent should bathe their baby at least once and to have that clean, newly diapered, freshly dressed baby in their arms for a little while.

-Demand that staff call your baby by name at all times. Demand that staff call you by your preferred name (mommy, mama, mom, mum, mummy, dad, pop, papa, daddy) etc.

-Designate someone to handle the phonecalls, emails, texts, and other inquiries of how you're doing and how they can help. If you have a house of worship, ask your clergy/reverend/pastor to have your religious family to pray for baby and for you as a family.

-Ask that if people feel they have a "word" or "message from God" for you that they refrain from telling you for a set period of time. Or ask that they tell your clergy the word or message and your clergy can collate them for when you're ready to receive them.

-If someone offers to collect your mail, run errands, sort your mail, pick up groceries, fill prescriptions, care for your other children, clean your house.... LET THEM! Designate someone to coordinate meals as people will want to cook you something. If you have allergies or preferences, let this person know. If you've got plenty of meals in your fridge or freezer, let this person know.

-Let people know that you'd like/not like visitors and which phone number or email to contact before they come over. Don't feel pressured to have your house spotless before people arrive. If they want to come over and cry with you, let them. Their heart hurts too and they want to support you. If they end up making a cup of coffee or tea and start doing your dishes, don't stop them. This is how they want to bless you. If they ask if you need any laundry done, show them the soap and softener and let them go to it. If they offer to take your children for the weekend so you and your man can have some alone time, let them.

-When it comes to plan your baby's funeral, what you want is what will happen. If you want to play a slideshow of photos from baby's life, play it. If you want baby buried in a certain outfit, tell the funeral home what you want baby dressed in. If they offer a last cuddle before burial, and you're ok with holding your baby then do it. Be aware that baby will be very cold as they will be held in cold storage to preserve their body. If you want baby cremated, ask that they be cremated in the special outfit you have chosen. If you want certain music played at baby's service, have it played. This is your beloved child's send off and as heartbreaking as it is, you'll want things to go your way. If you want a closed funeral and memorial service, let your clergy know. If you want an open funeral and service, let them know.

-If you'd like to release doves, butterflies or balloons, let the people planning the burial and service know. LET PEOPLE KNOW YOUR WISHES! If you don't tell someone, they won't happen. As much as you'd like to stick your head in the sand and have this all blow over, you have to let people know your wishes.

DONT'S

-Don't be afraid to cry. It is a natural response and one that is needed. Bottling up how you feel is not a good idea. Go ahead and cry.

-Don't refuse help from friends and family. If they want to bring you food, let them know what you'd like. If you have too much food on hand, let them know when you'll need some again.

-Don't forget to take care of yourself. If something doesn't feel right, don't hesitate in calling your doctor.

-Don't forget to schedule your 6 week check up with your doctor. Take care of yourself!

-Don't be ashamed for asking for help. If you're diagnosed with Post Partum Depression, there is no shame in getting help and taking medication. Do what you have to do to take care of yourself.

-Don't be afraid of support groups. Also, don't let people push you into going to a support group when you're not ready. There are online "support" groups such as Grieve Out Loud, Faces of Loss Faces of Hope, Still life 365, still life with circles, The TEARS Foundation, Forum for Grieving Dads and various other groups on facebook. Don't be afraid to reach out and talk with other mothers and fathers who have been there done that before. Lifelong friendships can form and a whole new world of support can develop.

-Don't let people belittle your child's existence. This is your child and even though they have died, they are still loved and missed by you.

-Try not to be offended by people who mean well. No one really knows what to say to a bereaved parent. Take a deep breath and let them know: "I know you mean well but what you've just said is very hurtfull. I'd appreciate it if you'd not say that again." Or something of the like. You'll discover what you'll wish people will say and form your own response. Remember to be gentle as people don't often realize that what they say is offensive to grieving parents.

-Don't jump back into things too quickly. Take your time. You don't want to burn out with your regular routine ontop of finding out how you'll live with your grief. Ease yourself into things gradually. Talk with your boss about coming back to work for a short shift with the understanding that if you need to leave and take more time off, that you'll be allowed to.

-Don't be afraid to honor your child's memory. Plant a tree, have a balloon release, commission a piece of artwork for your home, make a scrapbook of your baby's life starting from finding out you were pregnant, buy a piece of special jewelry engraved or stamped with your baby's initials or set with their birthstone, release a dove or butterfly on special dates, write a journal or start a blog about your life after your child died, start a charity in their memory, donate to foundations that deal with children that faced the same issues as yours, etc. Something will catch your eye and just go for it!

-Don't forget your family. They'll need you as much as you need them. If you have other children, let them know that you are sad their baby brother or sister has died and that you need to cry. Let them know how much you love them and remind them often. They'll need the support from you as you will from them! Let your family know that you'll need some space to yourself to process your grief and that when you say you need some time alone that you expect them to leave you alone until you say its ok to be with you again. If they say they need some time alone, give them the same courtesy.

-Don't be afraid to write a letter of complaint to your hospital if you feel you were treated badly or unfairly. Don't be afraid to write a letter of commendation or thanks to your hospital for their services if you were treated with great care. Most medical professionals would like to hear from you after the fact.

-Don't be afraid to ask for a follow up appointment with your doctor or midwife if you have questions about your care. My midwife and OB were more than happy to go over our care and treatment with me a couple weeks after Evan died and when I was in a better frame of mind. If you have questions, ask them and get answers if it gives you peace of mind.

Have we forgotten anything? Contact us and we'll add it to the list!

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