Tuesday, March 15, 2011

Out On a Limb

Originally posted on FB on December 12, 2010

I try to help new mommies when I can when they get a surprise at their baby's birth. Its a fine line and I usually dont cross too far until tests come back. For reasons I dont know, I went all out this weekend.

I encountered a possible 'new Mommy' at work this weekend, Friday night. I knew they were testing. From the doorway of her room in the NICU I can tell she is going to be one of ours. I smile on the inside only, as I look into the face of her momma who didnt know, who still doesnt know for sure...but has that lost look of despair, hope and undying love. Im the only one who sees this look and recognizes it for what it is as I walk in to remove a ventilator to make more room for Daddy's recliner. They are spending the night in her room.

You see, they were about to go home with their 1st born bundle of joy and she decided that she needed to let them in on a secret before they left. She had a little 'blue' spell eating. We are all familiar with that. I know I am and not just from working in the NICU, Kai had an AV Canal and Coarct. So instead of home, she was whisked away to our NICU. Reading through her chart I realize that from birth and every record of an 'exam' there is noted slightly upslanted eyes, protruding tongue, low set ears, yet no one Dr or nurse said anything. As soon as she is brought to the NICU the same features are noted and then they immediately discuss with the parents the possibility of Trisomy 21 and they would like to do genetics testing.

As I am leaving the room I look at Mommy and see that far away look, not really looking at anything or even really there and I ask her, 'Mommy, are you OK?' 'Yes' she says.A few minutes later she comes out of the room and asks for the restroom. She is pointed to it and we go about our work. About 10 minutes later Daddy sticks his head out of the room and the nurse asks, 'Do you need something Daddy?''I was just checking on my wife...'

I am standing across from the restroom door. We realize its been a while and we rush to the door and knock...'Mommy? Are you OK?''Yes, yes...Im just splashing water on my face.'I know then that she is in there crying. She doesnt want her husband to know. We always have to be so strong, us women. Makes me remember back. She opens the door. The nurses still dont know what's really going on. They ask, 'Are you dizzy?''Oh yes...yes...a little...' she lookes up at me and I see the red rimmed eyes.They rush a chair over to her and sit her down in it and are about to attempt vital signs and such that you would do for a woman that just had a baby 3 days ago. I dont know what overcame me, Ive never been this bold before...but I just stepped in between all of them and her and put my hand on her shoulder.

I just started rambling. I didnt even tell her what I was talking about or anything. I told her It WILL be OK. It's not like you think. It's not what I thought. Its so much more than you can ever imagine, its a love deeper than you will ever know. I said, 'I can say this because I know, my son is 2 years old and he has Down syndrome.' I can honestly tell you that 6 months from now you will wonder why you were sitting in this very chair crying...and you may think Im a nut-job standing here telling you this, but you will see...I promise you. By now my voice is actually quavering and my eyes filling up and so were hers, but I can see that I broke through that cloud, that fog and was really talking to her.She said it was so hard because they were about to go home and now she is scared because the baby wont breathe right when she is feeding and she is afraid she will hurt her somehow.(At some point I notice all the nurse had scattered away to leave me with her.)She said it doesnt matter, its harder not knowing what is causing this problem or that there may be no answer as to why she is having this issue. She said, she is already here, I already love her.

I kind of had to regain my professional composure at this point...because there is no 'diagnosis' yet. I told her not to get ahead of herself. They dont know anything yet and to just take it one day at a time. She will be the same baby today that she was the day she was born that she will be 10 days from now, whether she has 46 or 47 chromosomes. She.Is.The.Same. She wont be any different, but you will. But dont worry, there are hundrends, thousands of us out there and we stick together like you wouldnt believe. I told her she will never be alone in this if that is what is for their family. She asked some about Kai and I told her what a joy he is and that he did have OHS at 10 weeks old and has done beautifully. By now her tears were gone and she was smiling, her husband finally made his way curiously down to us. She said, 'Im fine, Im just talking with Julie here...'

I asked her if she was OK to get up and go back to her baby girl and she was. I told her that whatever the outcome, do all the same things you planned; breastfeed her: and it may take a while...lots of mommies with any baby can have difficulties; love her, show her off proudly, have the same hopes and dreams for her because ALL of that is still possible. I told her Good Luck and Congrats and off she went to her room.Last night was my last day there, so I asked another coworker that if her tests came back for Down syndrome to give her my name and she could find me here on FB, if she wanted.

I have always wanted to help people, thats why I chose the medical profession. But I always felt there was more, something deeper more passionate within me...I wanted to make a difference to someone. After I had Kai it became very apparent what my purpose and passion is, but its a delicate process. Its difficult to find that balance of showing others, including the parents, the joy and excitement of a baby with DS and not disregard the feelings of sorrow and loss that they are feeling as well. I am so thankful to have Kai in my life, he has opened my life up to a happiness I never knew existed.


  1. How wonderfully put! We will touch others one person at a time! We will never know the full extent of our reach!

  2. So true!!! As a nurse & a mom to a little guy with DS, I feel exaactly the same way.

  3. Julie, I love this post. I just love it. I used to be a floor nurse (NICU/PICU) and if I went back to work, I am not sure how I would know just where that "line" is. Your compassion and understanding comforted that mother. You are a good woman.

  4. Great post! It must be hard, but I hope you KNOW you did the right thing! I would have loved that if a nurse would have empathized...we are human after all.

  5. Typing through tears here- absolutely beautiful. While I only "mourned" for a couple brief days in the hospital, none of the nurses EVER mentioned DS even though it was quite clear. I don't know if it's because I seemed like I was handling it fine or they just didn't know much about it, but I would have LOVED to have a nurse reach out like that. I'm sure that mother will thank you every single day of her life for that brief moment.

  6. Great job getting beyond the fear and stepping out to help her in what was obviously a bewildering moment that could have easily turned to darkness! You were a blessing to her