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The Loss of Your Preemie


They are words a parent never expects to hear. Our babies are supposed to be with us and such a loss can be devastating. From saying goodbye to then making decisions about where your baby will have a final resting place can be an enormous tunnel of emotion. It is so important to find comfort during this process. Maybe there is a symbol for your baby such as a butterfly that will bring you comfort, use that symbol in a way to bring you peace at this time.

Losing your baby is an incredibly tough journey. We use the word journey because the pain does not stop once you have said goodbye. Loss is so individual and grief is dealt with so personally. It is different for both men and women or even siblings and grandparents. Even the nurses and doctors that may have cared for your baby can feel a sense of the loss.

The NICU journey is also a piece of this loss. Those who have lost a multiple may still be visiting the NICU for the survivor or survivors. This can also be a very difficult challenge. Some parents are in survival mode and steam ahead while others may feel overwhelmed and lost in this process. There is no correct way to handle all that we can be faced with when we lose a baby. 

All of these emotions and feelings can be overwhelming. Support is so very important in whatever way you can find it. This can be through family, friends, neighbors, church affiliations, support groups, or counseling.  As hard as it may be to reach out to get support and feel understood, it can be invaluable. This is a difficult road to travel alone.

It is also important to take care of yourself physically.  Just remembering that you are important will help you get through the day sometimes. This can be done by treating yourself to a little pampering, having lunch with friends, exercising, or maybe even making yourself a healthy meal if that is what makes you feel good.  You may be tempted to use alcohol or other substances as a way to cope.  Try to lower your use of these substances or avoid them altogether. There are many community resources that can help you.

Georgie’s story

I am mother to 24-weeker identical twins. I suffered Twin-to-Twin Transfusion Syndrome (TTTS), which meant one of my boys was getting too much blood and the other was not getting enough. Cody flatlined in utero and he was born very sick at one pound and six ounces. Dalton was also very sick born at one pound and two ounces. We lost Dalton at three days from many complications with his kidneys and sepsis. It was the most difficult day of our lives. Cody survived, thankfully, even though they told us he would probably not make it. He stayed in the NICU for 143 days and came home on oxygen for an additional six months, with numerous medical issues, several surgeries in two years and occupational therapy and speech services provided by the county. He is now three and doing amazing. He has defied all odds. I miss our other little man so very much and struggle at random times just depending on what is happening at the moment. We also have a wonderful five year old son too, who was two at the time the twins were born. He is now asking about Dalton, wants him here to play with, wonders if there are TV's in Heaven (bless his heart). I have a hard time explaining it to him and he has even cried wanting his brother here. We feel so very blessed with our two living boys, but I miss our sweet boy every day. It is the craziest emotion to feel sadness and joy all in the same moment. I will always consider myself a mother of twins--just one resides in my heart and provides me with enormous strength when I am weak.


Parent-to-Parent Match

Preemies Today can match you with another parent that has also experienced loss.  Please contact parentmatch@preemiestoday.org or call 703-229-0835, if you would like to be matched with another parent.

Comfort Pillows


Preemies Today offers comfort pillows made out of a soft satin. These hand stitched pillows include a side pocket for special keepsakes of your baby.  If you have experienced a loss, please contact info@preemiestoday.org to request a comfort pillow.