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?
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Thank you!!! It breaks my heart that normal breastfeeding isn’t supported whenever possible (sometimes even in normal hospital births). So many moms can’t establish continued breastmilk through pumping, let alone the bonding and myriad other benefits for both Mom and baby that don’t exist in pumping. That’s got to be all the more important for little sick ones (and their mamas) in the NICU! To add to the challenge, so many parents are in the biggest, scariest whirlwind of their lives in these moments and we’re prone to think the medical staff know and do what’s best – the hospital staff should be standing up for the best scenario possible, and they often don’t or can’t or simply don’t have time. (Just to be clear, I think many many hospital staff are phenomenal care givers and I am so grateful that medical intervention AND pumping are options when needed – but I think we may say “needed” all to quickly.) ALL that to say – thank you for speaking up and sharing your story!
I went into labor with my oldest 5 1/2 weeks early and she was delivered via emergency c-section. About 6 hours after she was born I still hadn’t held her. When I asked the nurse to take me (I had to go by wheel chair) she told me “No” and said I should wait until morning! So my husband told her “No” and took me himself. Even though she was early, she was perfectly fine other than a bad case of jaundice. They kept telling me to feed her formula but I refused because my milk came in right away. I did decide to pump in addition to nursing, but as a first time mom, it was definitely hard to assert myself when they told me what was best for me and my baby.
Aleta, You are so right. I look back to all that I allowed to happen with my first few babies and it was sheer ignorance on my part, not knowing what I could say no to. I am so glad your hubs was able to help you be more assertive as it is so necessary sometimes!
I love this. Thank you for sharing. My second child was nearly admitted to nicu and the thing I was most scared of was pumping in that room and counting the millilitres. Luckily he avoided admission but I do feel that hospital staff can be a little overbearing with first time mom’s. Second time mom’s have a bit more much needed attitude
It is so true Leanne, and so hard to find that place of confidence to just say what you want for your child.
I am so happy to have found you! I actually came across this blog posted on Twitter and knew when I got here, I was going to want to read everything else as well. I can’t tell you how many times people have called me a “hippy”, lol, yes, without all the drugs and free love.
It’s SO refreshing to see that you stood for the things you stood for. Good job! I wish more people, especially parents, would also come to the realization as well, but I know not everyone will.
I’m looking so forward to reading more. Be blessed this day!
Stacey, thank you os much for taking the time to comment and stop by for a visit. I think some of the ability to stand up for your babe has to do with experience so I was definitely not as confident with baby #1 as I am now. And yes for sure, I’m a crunchy hippy mama all the way to where I stop just shy of the drugs and free love, lol.
I don’t know how I missed commenting on this the first time! Wow, so many memories and emotions come flooding back…. 28 years ago…. I totally relate to the feeling of my baby being kept from me for hours! I called down to the nursery repeatedly and they kept putting me off. I was unaware of Kelsey having Trisomy 21as of yet… they were telling me it was a problem with getting her temperature regulated (which was part of it). I wanted to nurse her and told them so. My husband had had to go to home care for our other three kids and I had no one there when the doctor came in and gave me the news in a very bizarre manner, I might add.
She had very weak muscle tone and could not latch nor suck effectively, so I pumped and fed her via an eye dropper (for months) so nipple confusion wouldn’t happen, but the nursery fed her bottles when I wasn’t able to be with her because of testing. I walked down one day and about flipped when I saw her being fed from a bottle while formula coursed down her cheeks and chin in rivulets as she was unable to swallow fast enough. In order to allow us to leave with her I had to prove that she could latch and suckle for 20 minutes… I prayed a lot but it took only 10 minutes to get her to latch as opposed to the 20 it normally took just for her to get a successful latch! We went home but she was admitted to Children’s NICU after three days with jaundice. Thankfully the nurses were very helpful and understanding there, and I nursed her with no opposition, however, I had to pump anyway because she wasn’t strong enough to nurse for more than 10 minutes… She would fall asleep exhausted and I’d hand feed her while she slept until she woke up and it was time to start the whole process again! Thankfully, the NICU also sent one of their super pumps home with us and I was able to build my milk supply despite the fact that she could not for lack of strength AND I was unknowingly dealing with placental retention, which was hormonally keeping me from producing well. What a crazy time! It paid off, though, because by 7 months Kelsey was nursing like a pro…. I allowed her to wean naturally and she nursed until 5 years old. She was frequently sick and a non-sleeper due to apnea, so comfort nursing lasted a while longer. It’s funny because she still talks about “when I used to have ba-ba I was really happy.” Its true, she was the most content baby/child I’ve ever seen. It was very important to me that she get all the benefits but I would never judge someone who decides not to breastfeed based on the level of hardship and stress… every one must make their individual choice; I would just recommend doing the research to understand the positives involved.
As a nurse I have seen so many arbitrary policies that have more to do with cya and and cutting cost than to benefit the patient. I really appreciate when patients and their families are able to advocate and ask why?” I try to teach people the importance of advocacy and asking questions. I encourage them to speak up and that I will tell them the medical reason something should be done a certain way (or if it’s a policy made for staff convenience and not the patient well being) and they can make their informed choice. Though, it is always helpful when everyone is being polite. Thanks. Good for you mama!
thank you for the encouragement!!! I love that you advocate for your patients like that.
When I read the title of this post I immediately decided to not like you and was already mentally preparing my reply about how important it is to breastfeed. Hahaha
Thank goodness I’m procrastinating on my work and decided to read the whole post. You are a super mama and I’m so glad you were able to nurse your sweet babe!
I’m breastfeeding my 14 month old twins and am a Breastfeeding Peer Counselor in my county’s local WIC office. The message you are putting out there is SO important for others to read.
When my oldest was 20 months old she was unresponsive and ended up being diagnosed with seizures but while she was unresponsive we took her to the ER where she spent several days. While there we were pressured to give her all sorts of interventions because that was what was done. She ended up with lots of side effects from all of the extra interventions. My baby girl is now 4 and I’m still angry that I didn’t just say no. I’d like to say that I’ve learned my lesson and I’ll be stronger next time, but at least the hospitals around here, the pressure to do what is ‘recommended’ is intense.
It is so very hard to go against the grain and tell hospital staff that you want to do things your way, I never could have been that strong before having a number of kids. I so wish that parents were given the information they need to make educated decisions.