To say that I am an easy patient would be a lie.  The fact of the matter is that I am not overly fond of medical interventions, especially ones that are not absolutely necessary.  I am an older mom; I have 6 children so I have done this a time or two.  What I have learned about the medical field is that often, many things are done because they are just “routine” for care, especially with babies and breastfeeding in the NICU.

Our medical system is not one for individualized care because it takes a significantly longer period of time to specifically individualize the care plan to the individual than it does to say “for this ailment, we do this procedure.”  I am very thankful that when necessary, our medical system is there, but I also like to have a say in what is going on and I don’t follow the that is just how we do it  mentality.  I like to have some say, so I said no.

Let me give you a bit of background…

When I was pregnant with Cedar we were blissfully unaware that he was going to be born with Down Syndrome.  I have planned homebirths (total hippy minus the drugs and free love) and we had a 20 week and a 21 week level 2 ultrasound done to make sure all was well before we parted ways to be under no more than midwifery care.  This is the same road I have taken before, and though not for everyone, it is right for our family.

Cedar was born at home and at birth my husband and I noticed some unique attributes in his appearance.  My husband is an RN, our midwife has trained in the medical field, and I am a former social worker so we noticed things.  Our pediatrician confirmed for us when Cedar was 2 days old that she felt he had Down Syndrome, it was the very next day he was also admitted to the NICU for elevated bilirubin levels, he was jaundiced.

I was still reeling from the Down Syndrome diagnosis at this point, it hadn’t even been 24 hours.  I said we noticed some physical attributes at birth that we questioned, but denial and hormones are powerful. Then to hear the diagnosis from not only our pediatrician but also the neonatologist at the NICU was like knocking all 10 bowling pins over in a perfect strike. I was kind of a mess.

At admission I was in a rough place, but I knew one thing, this was my baby and I loved him.  I also knew that I wanted to be sure I bonded with him like my other children and when I realized that I was seeing Down Syndrome in my head and not my beautiful boy, it was all the more a reason I wanted to bond so strongly with this little guy, he deserved it.

The very first thing that the nurses said, after looking at me with a blank stare when I answered the question about which hospital he was born at…(remember this was a planned homebirth) was, “Okay, there is a pumping room and while he is under the lights for jaundice you can pump.”

I said… no.

I said it nicely, I wasn’t mean, but I was firm.

No.  I won’t be pumping.  Again, blank stare.

I felt the need to explain.  “You see, my son is only 3 days old, he is exclusively breastfed, and I don’t want any nipple confusion, so I won’t be giving him a bottle.”

“Oh,” was the response.

Again, I assure you I was nice about it, but firm.  I also assured the nurse that my baby was having plenty of wet and dirty diapers so I knew my milk was in, I have had jaundiced babies before and I clearly understand that the only way to eliminate the bilirubin is through excreting it in the urine and bowels.  Therefore, I understood that frequent feeds were  a must to get his levels down and get us home.

It’s kind of funny what happened next, I don’t know if I was labeled as, that mom or if my knowledge about jaundice and my level of understanding impressed them, maybe it was just that the whole homebirthing thing freaked them out, but they didn’t come back much unless they were taking vitals.

I want to let you in on a little secret though, I am the mom.

You are the mom.

You can ask for things, request things, and assert your opinion, nicely of course.

Oh, and by the way, I also told them I didn’t want repeated rectal temperatures taken on my new baby.

What?

Yes, I didn’t like the every 2 hour hospital policy of taking rectal temps so I simply said, no.

I advised that the nursing staff could take his temp another way and that unless it was elevated on his axillary (other location like under arm) I didn’t want a rectal temp taken.  The nurse this time almost seemed relieved.

So there it was, the first step of control I took,  in what seemed like a totally out of control situation for me.  I couldn’t control Cedar’s diagnosis.  I couldn’t control his jaundice levels.  I also couldn’t control how long it would take to get us to what would feel like our new normal.

But breastfeeding, that I could control.

It may seem small but it seriously helped.  Cedar was nursing like a champ and I felt some small spark of control, as well as the knitting of an intense bond that was weaving itself in my heart for this new little life that I was nurturing and caring for.

That is why I told the NICU staff I wouldn’t pump breastmilk.

Want some more tips on breastfeeding a child with Down Syndrome?

 

Have you seen our new Children’s book?  The Amazon ratings will tell you a LOT! (affiliate link included- just click on the picture)

Are you dealing with the medical side of Down Syndrome right now?  Will you be in the future?  If you want to be on top of all of the medical information that will likely be, or has been thrown at you sign up for my email list and get a free downloadable organizer for all of your medical information (specifically helpful for infants/children with Down Syndrome). Here is a post on how to Organize Medical Information and the free printable you see below will be sent automatically to you in a welcome email when you sign up for my  list.