I belong to a support group online for moms or dads carrying to term despite a fatal diagnosis. This group of mostly women have been incredibly helpful. They are supportive, informative, loving, caring and can relate to the heartache of what we have been through or are facing. I would probably be in a padded room somewhere if it weren't for these women.
My heart always aches when a new member joins because it means there is another baby that has a less than one percent chance of making it. I feel relieved that they found the group so that we can offer support, information, and other types of assistance to them. The other day we were asked "Knowing what you know now - if you had the chance to go back in time and give your pregnant self a piece of advice or a tidbit of wisdom, what would it be?"
My first thought was "not to feel guilty; not to feel guilty for the things I didn't do or didn't do enough of." After Reagan's passing I have quickly learned what's like to be envious. Memorabilia envy. We are not talking about the kind of envy when you learn your best friend has an autographed picture of Russell Crowe or owns every movie staring Matthew McConaughey. We are talking about memorabilia that you will never be able to get more of. No more baby pictures, no more foot or hand prints of your precious baby, no more lockets of their beautiful fine hair, no more tiny outfits that they had worn, no more stuffed animals that your baby touched. No more anything.
I quickly learned that I had memorabilia envy when a saw photos of another baby, yet they were in color and the mom had on a regular shirt not a hospital gown. I emailed my photographer and asked her if she could work on a photo or two to see if she could put it in color. Reagan's hand knit dress has beautiful pastels colors in it and I wanted to be able to see the colors in the photo. She said because of Reagan's condition it really was best to have the photos in black and white. By the time the photographer got back to me, I realized that I was envious.
In our group, the soon to be mama has read about the guilt we mamas feel from the things we didn't do. She sees the way we mamas oh and ah over pictures of all the little angels. This soon to be mama doesn't want to feel like she left anything out. I don't blame her.
Here's what else I would do:
Take more photos; during the nine months, during labor, and a million of them after delivery. Have someone in the room just to take photos, so that way your hubby can be holding your hand. Photos of just your baby's ear, head, hand, foot, back, nose, eyes, mouth. Make sure the shots are from every angle, not just from the side.
Talk to your baby out loud. I told Reagan I loved her a million times, but most casual conversations were just thoughts in my head. I wish she had heard my voice more. When I think of her hearing me I think more of me talking directly to her, not me chatting with my mom, Bob or my friends (which I did a lot of that).
Have a blanket or something monogrammed with initials or the baby's name before the baby is born so you can take photos with it.
Don't freak out when the driver of the hearse and/or limo isn't going the direction you think he should be going. Luckily God intervened and told me to chill. It wasn't the best route, but we got there and the service couldn't start until we did. Sorry to those who got lost along the way. Look to see if there are going to be any road closures the day of the service. There was an art show in our town and luckily we did avoid any of the art show traffic.
I was surprised how alone I felt when my hubby stepped away to talk to family in the waiting area or to grab a sandwich from the deli. Have a nurse relay the info or have someone grab him some food. I didn't know I would feel like that until it happened. He didn't leave my side after I told him how I was feeling.
I am really thankful that we did the following:
A private childbirth class. Reagan was our first. I had wanted a non-medicated delivery, plus I wanted to know how to labor. We had the most incredible instructor, who is now our friend. Barbara Negelow with Ready Birth took our situation and made it a joyful experience. She advised me that if I labored with Reagan without medication and being able to rest, that when Reagan was born, I maybe really exhausted and not be able to thoroughly enjoy the time we had with Reagan. I had never thought about the labor as such. I am really glad I had pain medication and an epidural. I was able to rest and be with my daughter and all our visitors throughout the day. I had been awake from 1:30AM until 11:45PM, that's a long day. I also made sure that I was not given any drugs that would make me too sleepy or loopy while delivering Reagan.
A private tour of the hospital. We saw the NICU department and avoided the nurseries.
After delivering Reagan we got those little buttons that say, I'm A Mom, I'm A Dad, I'm A Grandma, I'm A Grandpa. We handed them out to the appropriate family members to wear at the reception after the funeral/burial.
Called NILMDTS for photos. I am so thankful for these photos. They are beautiful and there is not a day that goes by that I don't look at these photos. I have to clean the glass on the frames from the kiss marks I leave.
Bring good tissues; either bring them yourself or have someone bring them. You will not want to use the hospital tissues unless you want a raw red nose.
Bring an eye mask and ear plugs. It's hard enough to sleep in a hospital.
When friends offer to do something, let them. Our church community, friends and family helped us immensely.
Find a point person that is not involved in anything else to be the go to person for your out of town guests. For directions, etc. Have someone print out directions from where guests are staying to the; funeral home, church, cemetery.
I am very thankful that we had Reagan's service planned out before she was born. We didn't have it finalized, but we had songs picked out and had an idea of what we wanted the service to be like. My husband, who is an ordained ministers, wrote the service a week prior to Reagan's birth.
We had all the time we wanted with Reagan. The funeral home didn't pick her up until 10:30PM. We had the gentlemen come in our room to get her. We said a prayer while handing her over. Handing Reagan over was one of the hardest things I have ever done.
Don't have the funeral home wash your baby's clothes.
Spend as much time as you want with your baby at the funeral home. We saw Reagan earlier in the day before the visitation. So when we went back that late afternoon, we didn't feel rushed or feel too emotional when greeted with all of our guests.
We had a friend take pictures at the visitation, funeral and burial. Remember there may be pictures you won't want to see now, but may in the future.
I am sure there will be other things that I will remember and include on this list.
Remember most of all, cherish the time you have with your baby; whether in the womb, during the birth, and after. Give your baby all the kisses you can.