Documenting my preemie birth experience

I'm glad that people are finding the 20 questions useful. As promised, here are my responses to the questions. I used my son's birth for this one. I took out all of the NICU related questions because I think I'll do those as a separate set of answered questions.

1. What are the facts?
   a. Weight/height/gestation info.
   Dominic was born weighing 1 lb. 15 ozs., he was 14 1/2 inches long and was exactly 31 weeks.
   b. Birth info – why did you have to deliver early?
   I had to deliver because I had HELLP Syndrome. My blood pressure was skyrocketing, my kidneys were beginning to fail and Dominic wasn't moving as much as he should have.
   
2. What are some of the firsts you remember most?
   a. First seeing him/her
   I got to see Dominic for the first time as they wheeled me from recovery to a regular room. I remember being amazed at how tiny he was and yet he was still able to hold my hand for a moment.
   
3. Beyond your significant other, who was the first person you told about what did or was going to happen? Why?
   The first person we called was my sister. She was going to college at the time and living with us. She came right over and stayed with my husband which was great.
   
4. What was the scariest moment?
   One of the scariest moments for me was when I realized that I was going to have surgery. I had never had surgery before and the only thing I could think about was those Reader's Digest stories where the pain medicine doesn't work. In a way I'm glad that those thoughts were there because they quite honestly made me focus on something other than the fact that I was delivering our baby so soon.
   
5. What was the happiest moment?
   Getting wheeled into the NICU and seeing my son. It was also scary but seeing him there looking like a real baby (I seriously had no idea what to expect) made me happy. And hopeful.
   
6. When you look back, what makes you laugh?
   I will never forget this particular moment. The doctor had just told us that they needed to deliver right away. In my head I'm thinking "Okay. Well, I haven't had Lamaze classes yet so this will be hard. But women did it without classes for years so I'm sure I can do it." My thoughts must have been apparent somehow because suddenly the doctor looks at me and says "This will be an emergency c-section." Of course I looked straight back at him and said "Right. I figured that was the case."
   
   The other funny thing I remember is not being able to stay awake during the first 24 hours after surgery. They had to give me magnesium sulfate and that stuff knocks you out (esp. when they give you a really high dose). I would fall asleep in the middle of conversations. At one point they had brought me a Popsicle and I distinctly remember my brother-in-law sitting there and having to tell me over and over again "Debbie. Don't fall asleep. You have a Popsicle."
   
7. What was the hardest part?
   I had to be put under for the surgery because my platelet levels were so low. Waking up in recovery I had no idea if my baby had made it, how he was doing or anything. My husband came in pretty quickly to tell me we had a boy and how much he weighed. The nurses promised to bring in a photo however it seemed to take forever. I felt like I was in that room for hours (turns out it was only about an hour and a half) and just knowing that my son was in the NICU somewhere and I couldn't go see him was really hard. I did finally get two Polaroid pictures to look at and I will always treasure them.
   
8. What surprised you the most?
   I was really surprised by how hard it was to recover from the initial surgery. In some ways I'm thankful that my first 24 hours were foggy because I didn't focus on the fact that I couldn't see my son. The next day I thought that I was doing much better and started to grumble to the nurses that I was FINE despite what they said. So the nurse had me get up and sit somewhere while they changed the sheets on the bed. Not more than 30 seconds into it I thought I was going to throw up. Hmmm. Perhaps the nurse did know what she was talking about.
   
9. Who was there? Who helped you the most?
   Many of our family and friends came out to support us which was great. My parents, my husband's parents and my sister (and her husband) were there quite a bit and that helped a lot.
   
10. What are you most grateful for?
    I'm grateful for the anesthesiologist in the operating room. Just as she was putting the mask on to put me under she said "You are going to be fine and your baby is going to be fine." That helped me relax so much and I will always remember that moment.
    
11. What sounds or smells do you remember?
    Hmmm. I don't really remember anything right now.
    
12. If you could capture one moment in time and take a picture of it – what would it be? Why?
    I think it would have to be the moment they wheeled me into the NICU and I got to see my son for the first time. It was scary but also so wonderful. Even though we remained worried about him and his survival for the first few weeks, I think in that moment I knew he would make it.
    
13. What would you change about the way you did things or a decision you made?
    I had known that things weren't quite right for the last couple of months (I was really small) and I wish I had pushed harder for them to check on the baby. Since he was my first I didn't really know what the expect so I wasn't sure if I was right or just being paranoid.
    
14. What have you learned from the experience?
    I definitely learned to trust my instincts more. If something feels wrong (or right) than I try to listen to what that inner voice is saying and go with that. I've also learned that sometimes the most important things are taken out of your hands (the care of my son) and that has to be okay in order to get to the next step (taking him home).
    
15. Have you changed from the experience?
    I think so - I hope so. Among other things, I've become much more assertive with medical personnel. This is my body (or my child's body) and I will always have a say in what is done and why.
    
16. How did it make you a better person?
    I think that the whole experience has made me much more thankful for what I do have. It has also made me realize that things happen that we didn't want or have any control over but we have to make the best of it. Whatever that might be or mean.
    
17. What would you tell other people who are going through the same thing?
    Trust your gut. Doctors are often too quick to disregard a potential problem. Friends may tell you - "oh it's nothing. Don't worry about it" And they might be right. But what if they aren't? If you really feel like something is off or not right, ask to be checked. The best/worst that can happen is that they tell you everything is fine.
    
18. Would you/could you do it again if you had to?
    Absolutely! And I did (with far more issues the second time - lucky me).
    
19. How did it feel when you knew you were going to be taking your baby home?
    Exciting and a little bit terrifying at the same time.
    
20. Five words that describe the experience
    Scary. Amazing. Terrifying. Humbling. Incredible.

Documenting the Experience: 20 Questions

Many preemie parents that I talk to have a hard time thinking, talking, or writing about their preemie’s birth experience and time in the NICU. Unlike healthy pregnancies, a preemie birth is far from a joyous, happy experience. Instead it is filled with fear, sadness and missed opportunities. Although it wasn’t the perfect experience, I feel that it is important (perhaps essential) to document the experience. Think of what it will mean to your kids as they get older. Whether you scrapbooking, blog or simply write in a notebook, capturing this experience can be a wonderful way to remember those beginning moments in your preemie’s life.

Ali Edwards has been a huge inspiration for me over the years. She has always made a point to focus on documenting the story. Using words and photos you can remember the memories of your little ones start in the world. She did a great series on using words and photos that I think is fantastic.

I think sometimes part of the problem that preemie parents have is that as they tell the story, the emotion of the whole experience comes flooding in. Most of us can quickly dissolve into a puddle of tears as we remember how we felt and what our babies went through. And that’s okay. I think that if you can concentrate on small parts of the story than you can really capture the whole experience. And hopefully by isolating specific moments, you won’t be so overwhelmed.

I have created 20 questions that I think will give any preemie parent a chance to write down and record their preemie’s experience and hopefully get through it. They might even help you remember things that you forget when faced with the whole experience. You can use the questions to write about their birth, the NICU experience, first year or all of them. In the next few days I will post my answers to the questions.

So take a deep breath. Dive in. Remember the moments. Enjoy the process.

1. What are the facts?
   a. Weight/height/gestation info.
   b. Birth info – why did you have to deliver early?
2. What are some of the firsts you remember most?
   a. First seeing him/her
   b. Holding him/her for the first time
   c. First bath
   d. First time on room air
   e. Feeding – first time breastfeeding, first time with a bottle, full feeds
3. Beyond your significant other, who was the first person you told about what did or was going to happen? Why?
4. What was the scariest moment?
5. What was the happiest moment?
6. When you look back, what makes you laugh?
7. What was the hardest part?
8. What surprised you the most?
9. Who was there? Who helped you the most?
10. What are you most grateful for?
11. What sounds or smells do you remember?
12. If you could capture one moment in time and take a picture of it – what would it be? Why?
13. What would you change about the way you did things or a decision you made?
14. What have you learned from the experience?
15. Have you changed from the experience?
16. How did it make you a better person?
17. What would you tell other people who are going through the same thing?
18. Would you/could you do it again if you had to?
19. How did it feel when you knew you were going to be taking your baby home?
20. Five words that describe the experience

Taking Pictures

Obviously we all take pictures of our precious preemies - some of us might be accused of taking too many (if you're in that group well, come have a seat next to me). Preemies present some interesting and challenging photo opportunities. I've covered some of those suggestions and issues in previous posts but I thought I would pull them together into one post.

In the NICU:
When your preemie is in the NICU you will obviously want to take a lot of photos. You want to document this very important time in his/her (and your) life and be able to show off your miracle to those who can't visit him/her. Remember to check the flash before taking a picture in the NICU - your preemie's eyes are going to be sensitive to light. Here are tips and ideas for taking photos in the NICU:

• If your baby is in an isolette - try and find the best angle to hold your camera so that the amount of glare is reduced. Whenever possible, take a photo of your babies face through the hand openings so that you can get an unobstructed view of your baby. Step back a few steps and take a picture of the whole isolette too.
• Showing size - pictures always make a baby look bigger than they are. Choose one object and photograph your preemie with that object throughout their time in the NICU. You can use a wedding ring, bracelet, small stuffed animal, ruler, diaper, your hand, a pacifier, etc. It's helpful if you also take a picture of the actual item next to something else so that people know just how big or small the item is in comparison.
• Showing size, part 2 - My mom found one picture of my daughter that had the nurses hand in the picture near her head. She printed out the picture in a 5x7 size and realized that the picture was life-sized. This was a great way for people to really grasp just how small our daughter was.
• Photograph milestones - Obviously you want to photograph the big (and little) events that happen to your preemie in the NICU. Make sure you capture the first time you hold your preemie, give him/her a bath, if he/she is on a vent or oxygen support - photograph when they change oxygen support or come off of it completely, moving from an isolette to an open crib, if grandparents/relatives come to visit - photograph them interacting with your preemie (even if they can't hold him/her), first feeding from a bottle, the day the feeding tube is removed, etc.

Here is a picture of our son with a pacifier - we would show people the pacifier along with the picture and it was a great way for them to realize just how small he was.

At Home
Obviously once you get home there are a myriad of photographing opportunities. Just like with any full term baby there will be milestones such as rolling over, sitting up, crawling, walking, birthday parties, etc. For preemies, here are some additional opportunities and ideas for taking pictures that continue to show just how far your little one has come.

• Coming home - clearly you want to document this momentous occasion - hand the camera to someone else so they can photograph your preemie arriving home and checking out his/her new digs.
• First times at home - Although many preemie firsts may have occurred in the NICU, you still get to experience those things at home for the first time. The first bath at home, first time a sibling gets to meet/hold your preemie, first time in the crib, etc. It's a whole new experience doing these things at home than in the NICU.
• Other milestones to think about - first time meeting relatives and friends, first time going out of the house, first time at the park, first time in the stroller, etc.
• Siblings - Make sure you photograph the reaction of your other siblings to the arrival of your preemie. This is especially key if your other children weren't able to see your preemie in the NICU and this is the first time they are meeting their new brother or sister.
• Showing size - still - Your preemie still has a lot of growing to do. You can document this growth by having your preemie hold the same item from the NICU that was used to show size. Take their picture with that item every month, year, or whatever works for you. For our son's first two Christmas's we took a picture of him in a stocking - the first year he fit entirely inside it and by the second year it barely went to his knees. It still serves as the most dramatic proof of how much he grew that first year.

Do you have a tip for a milestone to document or how to best take a picture of your preemie? Please leave a comment if you do. Thanks!