Preemie Support

K., My name is B. and I completely relate and understand. I carried twin boys to 27 weeks. They spent 3 months in the NICU. I did everything right. No smoking, ate right, read every book published. But still I was only able to carry them for so long. I would see women who did everything wrong and had healthy babies. How could this be fair? My boys are now 5 years old and very healthy and I occasionally still have jealous moments of women who have healthy pregnancies, who can bring their babies home and share them with everyone right away and whos only worry is making sure the baby has a clean diaper, enough to eat and plenty of sleep. I'm not sure if I have any magical advice to help you overcome these feelings. Only know that you are stronger because of your circumstances. And your feels are normal. Your NICU staff may be able to suggest a support group that you can talk to. Where did you deliver??

Don't blame yourself! You did the very best that you could. My 2 boys were born premature and thought they where not in the hospital as long as your daughter I still felt the same guilt. Until I realized that I had done all I could for them. My daughter was born lasr year and even thought she was term I was on bedrest for over 3 months! All 3 of my kids were born via c-section. It is hard to see other women have no problems with their pregnancies or deliveries.My husband has been a wonderful support and I realize that even though i didn't have everything the typical way at least my kids are here safe and sound and that there must have been a reason for all that me and my babies went through. Even if it was just to let other moms know that I have been there and understand. It may not make it better but I understand how you feel! Good luck with your daughter and enjoy her. They grow up sooooo fast! J.

I totally understand your feelings. My now 19 month old was 6 weeks early. What a shock that was. She was only in NICU for 2 weeks but but I had to wait 6 hours to see her for the first time. You're confused by the delivery, constantly questioning what you did wrong, etc. Just know, as the other women have already told you, you've done nothing wrong. Things just happen for a reason and I bet your next delivery will be smooth as butter :) And congrats on bringing that little bundle home! That's an accomplishment to be celebrated! Soon she'll be sleeping through the night, then eating solids, crawling, walking and more. Take the time to reward yourself on a job well done. She couldn't have made it this far without you (and her dad). Don't beat yourself up, just relax and enjoy! :)

I definitely understand. My son was 8 weeks early and I had to have an emergency c-section without really being able to give labor a try. I felt robbed of my pregnancy, robbed of the birth experience I had hoped for, robbed of how I wanted to start breastfeeding...I felt like I had no control over what happened to my baby or my body. And then the whole NICU experience- the staff was great but it was not easy. People would tell me things like, "At least you can get some sleep and recover before the baby comes home." Who can sleep when they are going back and forth to the hospital every day and have to leave their baby there? And then to have to pump every three hours around the clock? Of course I was very thankful that my son was healthy and he is now a delightful 2 year old who wound up being able to breastfeed for 16 months. But I think it is okay and necessary to grieve for the loss of the pregnancy and birth experience you had hoped to have, and to recognize that starting out at home with a preemie can be challenging as well. I remember him needing to eat every 1 to 1 and 1/2 hours around the clock, the GERD, overstimulation issues, etc. Then not to mention fears of having more children who might be premature. And I did feel responsible, even though they never figured out what happened other than my water breaking early. It is impossible for people to understand without having been through it, and to be honest it took me about a year or so to finally come to peace with everything. So give yourself time and permission to work through all of your feelings. I hope you have a lot of support, and if you would like to chat please email me.

J. (mom to Zach, 2 years old, and Talia (full term!), 3 and 1/2 months old)

HI K.,
I'm glad you reached out for support, because it is hard for most people to understand your feelings - most just think you should be happy everything turned out ok. My first child was born at 29 weeks and spent 67 days in the NICU before he came home, also on oxygen. I have since been pregnant three more times, each with very different outcomes, some happy, some not.

It took me a long time to understand my emotions after my preemie's birth -- here's what I figured out:

Although your baby is healthy and home with you, you still lost your pregnancy and completed only part of the journey that is so very important to becoming a mother (esp. if this is your first child). You probably had a vision of what it would be like (baby showers, registering for gifts, decorating a nursery, having maternity photos taken, etc.), and you lost it all, likely with very little warning. People have no idea what it is like to be pregnant one day, with no baby supplies in the house, no rites of passage like showers behind you, and then BOOM! the next day you have a baby struggling to survive, and you are off and running in your new life.

Although people mean well when they tell you you should be happy your baby is ok, they don't understand that you must first grieve the loss of your pregnancy and of your ideal vision of what it was going to be like. It is a VERY significant loss! It doesn't mean the world is over, and it doesn't mean or that you don't count your blessings, or that you are putting your loss at the same level as women who have lost their babies; it means it is a significant loss, followed by trauma, fear, stress, and anxiety. This massive upheaval in your life needs to be acknowledged and processed before you can accept that your journey into motherhood changed so dramatically with little or no warning, and no control. This is important, , esp. if this is your first child, because your journey into parenthood might differ dramatically in some ways from parents of normal, healthy full term infants. You will adjust and it will become normal for you, but it will take time to accept the hand that was dealt you.

For me, the negative emotions I experienced -- even after taking home my healthy baby -- slowly chipped away, and I slowly became more consumed by parenthood than by the journey that led me there. However, there was one big piece that I really struggled with: the really strong desire to try to do it again, this time "right." This was terrifying because no one could guarantee that the same thing wouldn't happen again. Indeed, my next two pregnancies led to even more grief. I tried one last time, and was rewarded with a perfectly normal, 39 week pregnancy and a boisterous baby boy. Now I look at both my boys - the one born at 2lbs and the other at 7lbs. , and I think, "My God, you are both my miracle boys". I was finally able to bring closure to all of the loss and yearning I have felt for years. I know I am extremely blessed, and that things could have turned out very differently.

Please don't interpret my experiences as a solution ("just keep trying till you have a normal pregnancy!"). For many women this is not desireable or possible, and thus other means are necessary to reach closure. Still other women won't react as I did while adjusting to a preemie birth. I just wanted to let you know that the things you are feeling are very normal and understandable, and you are not the only one feeling this way. If you would like to talk about your current feelings, and about your life with a preemie, please send me a message and we will be in touch. Hang in there and be kind to yourself!
Christine

Hi K.,
I know of this website that a friend of mine started. www.nicu101.com

I feel it's a great resource and so much support from other parents in the same situation.

Good luck to you!!

Hi K.,

I just want to let you know that I had the exact same feelings of guilt and sadness. When you know you did everything right, I think you are entitled to feel sad. I was in the NICU with several young teenagers that just didn't have a clue why they had preemies. One mom went skiing because boyfriend was going without her if she didn't want to go. There she is 27wk preemie. Another out doing cartwheels with her cheerleader friends, "Well, I didn't know falling several times might be a problem. I was just off balance and didn't know why I couldn't do a cartwheel!" I could not even speak when she said this to me. I also got that a lot about being thankful for being able to sleep or baby is doing well. It is upsetting to hear this. It would also be in the back of my mind, what problems there might be in the future, also. I remember seeing moms leave the hospital holding their babies leaving in a wheelchair. I would think how lucky they were for leaving with their baby. Walking 2blocks from the hospital thru huge hospital to the NICU a couple of days after giving birth with stitches and in pain. Sleeping in the chair next to my babies, and pumping in front of the everyone in the NICU because the was not place else. I had six preemies born differnet ages for different reasons. After my babies started to grow I would hear other mothers compare my babies with others. Oh, your baby should be doing this or that, why isn't your baby sittig or walking. Remember to adjust milestones by gestational age. Anyway, I just want you to know I think your feeling are normal and justified. Congratulations on bringing your wonderful daughter home.