I've Got Me Two Three Year-Olds.....So Take THAT, Bitches!

First of all, thanks for all of your comments on the TMI post. I'm thinking about pursuing the Mirena option, although it squicks me out a bit. But I've done some research and as they say, "It's not my mother's IUD." I'll let you know how it goes.

And yeah! The kids are three! Holy Crap how did that happen. We had a nice day at a local pizza place with an indoor hamster cage playroom. D's dad came with us and we had an unplanned meeting with a friend of ours and her little boy, so that was fun. The kids made birthday cake with me and we had cake with D's dad. We gave them each one small present (little airplanes) and a present to share (a doctors kit.) And that was it. (Party in the summer.) Pictures are on D's camera, so I'll put them up when I get them.

Three years old is a big milestone for me because I feel like I can breathe a sigh of relief about my paranoia that they would be removed from my care. I know this is quite arbitrary. It is based entirely on a comment that was made while I was in the hospital with them. But this comment ran over and over in my head and I would imagine myself as a mother of three year-olds. Where we would be and how we would get there. It seemed so very far away back then, like centuries away. But it came so quickly! And its here and we did it and no one can say we didn't or couldn't. So, okay, here is the letter I've been thinking about writing for three years. But couldn't write it until the kids were three, as you soon will see why. I might have to do some edits and shorten it up of course, but I'm pretty sure I'm going to send it. So here is the letter to the maternity ward director where the kids were born. And crap, I can't figure out the formatting. Sorry, folks. It seems to happen every time I Xed something out

December 8, 2007

Dear XXXXX,

I was a patient on the maternity floor of

XXXXX

Hospital

three years ago from December 7-12, 2004. I gave birth via C/S on the 7th to 35 weeker twin boys named Naim and Aaron. Perinatologist Dr. XXXX was my attending physician and the children were seen by pediatricians from The XXXX Clinic. Dr. XXXX is their current pediatrician. I am vision and hearing impaired, and the babies’ father, D XXXX, is a C6 quadriplegic. We stayed in

Suite

30

, if I remember correctly.

I am writing this letter because of several comments that were made by your staff concerning our ability to parent our children. Most notably, a comment overheard by a friend of mine as she waited in the hallway near the nurses station in which a staff member said that even if my partner and I managed to care for our babies the first month, they would definitely be taken from us by the time they were three.

This was not the only comment made in regards to our ability to successfully parent our children. A CNA (who referred to us as ‘welfare cases’) told a pediatrician right in front of us that the ‘word on the floor’ was that if left alone to us, our children would not be fed and cared for. We also were told by a lactation consultant that I did not have what it takes to breastfeed and should probably give up my pumping and feeding schedule. There were other slights and judgments made in regards to our ability to parent as disabled people.

This was extremely distressing for us during a time when we were in need of support. I had just had a retinal detachment and lost most of my remaining vision 3 weeks prior to the birth and had had a difficult eye surgery and bed rest leading up to the birth. My children, particularly Naim (Twin #1), were going through the usual problems that many premature babies go through, such as jaundice, low glucose levels, and a lack of a good sucking and rooting reflex. I was also recovering from a C/S and could not find a level of pain medication that didn’t make me extremely drowsy. I was not at my best, and I took the advice of our childbirth class instructor, who told me to use the hospital stay as much as possible to rest and recover. She suggested that I put the babies in the nursery at night and to not be shy about asking for the nursing staff to assist with their care while I was there. This is advice that sounded reasonable to me, yet apparently backfired.

I feel that the preconceived notions regarding the abilities of people with disabilities caused us to be unfairly judged and thus perhaps led staff to make decisions that were not in our children’s best interest. For example, other premature infants without a developed rooting and sucking reflex are often treated with an NG tube until their ability to eat on their own develops more fully. Perhaps this was a judgment call that could have gone either way. But in the four to six weeks following his birth, Naim was seen several times by a WIC dietician and nurse, a XXXX

County

outreach nurse, and the feeding clinic at XXXX. None of them could get him to eat any better than we could. We tried different nipples such as the Haberman, we tried different techniques and positions and schedules. Nothing worked. We ended up just dripping drops into his mouth, birdlike, for the first month. Finally, near his original due date, he just suddenly developed a sucking reflex. My point is that in any other situation, a baby like Naim would have been treated as he was; a premature infant with eating difficulties. Instead, some of your staff blamed his problems on us, on our inability to feed him due to our disabilities. I think that these types of judgments can potentially be harmful to patient care.

The other way these judgments and prejudices were harmful to me was the stress and fear they induced when I had to hear such comments. I did not know how far this would spiral out of control. Every time the door opened, I wondered if some social worker was going to come and take my children away. I was not able to rest and recuperate in the hospital; I was put on the defensive. One reason I did not accept hardly any pain medication was because I did not want to be mentally compromised if I had to fight for my right to keep my children. I cannot even describe to you the insult added to injury that the words of your staff caused my partner and I. We literally became fearful of some of the staff and watched our every move, making sure that we did not ask for or accept much help. We knew our every move was being scrutinized. This was not conducive to a recuperative stay for any of us.

I would like to take a few minutes now to tell us a bit about our family, and perhaps dispel any misconceptions you may have about us. I have a master’s degree in education and have taught school as well as worked at XXXXXX and XXXXX Children’s Hospital as a research associate and a child life therapy assistant. My partner Dwight and I met in college. His education is in computer engineering and he worked as a software developer at Hewlett Packard and now sells software for XXXX. We have been together for 13 years now. We are not married due to health insurance issues. He relies heavily on TriCare, military insurance he gets through his father’s service in the Marine Corps. If we married, he would lose this much needed secondary insurance. At the time of my pregnancy, I had recently changed jobs and was not able to have my pregnancy covered by my COBRA BCBS insurance due to the preexisting condition clause. I also receive Medicare through a disabled work program. I currently work as a CNA and as a writer for a disability education organization. Because of the job change, my pregnancy and our children’s first year of medical care was covered by Medicaid, which I paid a premium for. I imagine that this is why we were thought to be “welfare cases.” The children and I are now covered by a BCBS plan. We have a modest income, but we do work and we do meet the financial needs of our family. Regardless of this, I would hope that anyone who finds themselves utilizing Medicaid or other financial assistance could count on being treated in the hospital without judgment or rude comments.

As with any new parents of twins who had some eating and health issues, the first 3 months or so were tough, but slowly the kids got over their health issues and gained weight and began to thrive. We have occasional help from family, friends, and babysitters like everyone else, but we largely take care of our children entirely on our own. I developed a method for using a white cane while pulling the kids behind me in their double stroller. I learned to gauge diaper rash I couldn’t see by how they reacted when I cleaned their bottoms. I hooked up my hearing aid FM system to a baby monitor that would signal me when they would cry. DXXX developed ways to hold them and feed them by propping them on pillows. He could pick them up from the floor by using a transfer belt or just sticking his arm in the back of their overalls. We both developed ways to keep track of them at the playground using bells and lighted shoes and by starting small and setting clear boundaries while slowly expanding their world. Instead of sitting on the park bench watching them, I got to have the fun of following them up and down the playground slides as my way to keep track of them. There really has yet to be any parenting challenge that we haven’t effectively met.

They just turned three yesterday. And we still have them and have never been even close to having anyone threaten to remove them from our care. We have purposefully taken advantage of such programs as Healthy Start and the Washington County Public Health outreach program in order to have ‘witnesses’ that would vouch for us if there was ever a problem. These professionals have been in our home on a monthly basis for three years, and their time is coming to a close. We have always received complements on our parenting skills and how well the children are doing.

And they are doing wonderfully. They are healthy and well within normal range on the growth charts. They have met or exceeded all of their developmental milestones. They have learned both sign language and English and have that wonderfully hilarious vocabulary that three year-olds are known for. They enjoy trips to the park, the Children’s Museum, the Zoo, Church activities, and outings with other children. They enjoy traveling with me on the MAX and buses and are learning the rules for crossing the street (which in our case means they are learning traffic rules and patterns and the sounds of the intersection as well as red/green lights.) They will be starting preschool in the fall. They have no problem relating to our disabilities because it doesn’t seem like anything is different to them and I think this helps them to relate to others with differences. They are a joy to be around and they are the best decision I have ever made. They are the light of our lives.

I hope that by sharing our story with you, that you may look at the attitudes and prejudices that may be impeding on your staff’s ability to give the best quality of care to all of your patients regardless of their life circumstances. I want nothing more than to make you think twice the next time you have a disabled mom or dad in your care or anyone who may be struggling with a unique situation. And I want whoever said our children would be taken from us before they were three to know that they most certainly were NOT. There was never any reason to think that they would be.

I would also like to say that we do know that not every staff member felt the way that these ignorant people did. We did have wonderful nurses that seemed to go to bat for us. It almost seemed like there was a bit of a divide among your staff. We sensed a lot of ‘office politics’ going on that week that we might have been in the middle of. I wish I could remember all the names of everyone who was so kind to us. We were given the biggest suite and DXXX was accommodated with his own egg-crated hospital bed, which helped ease his stay with me. We had a wonderful nurse that helped me check out on the last day and gave me a hug and lots of encouragement. We had a nurse that was with us for the day shift for about three days and a night nurse that was very helpful. Now that I think about it, it seemed like the nurses that spent the most time with us were generally supportive, while those who only saw us briefly had the biggest misconceptions about us and caused the most stress. I think that proves that when people take the time to know us as who we are, not who they think disabled people are like; they don’t have any problem with us. Again, my point in all this is to encourage your staff to look at their prejudices and to share with you how much fear and stress it caused us to be judged in such a misguided way. No new mother (who has done nothing wrong and shown no sign of being unfit) should have to recover from a Cesarean and get to know and care for her preemie twins while being terrified that they will get taken away. That was nothing less than a nightmare.

Thank you for taking the time to consider my situation. I hope it helps you better serve future patients.

Sincerely,

Lisa XXXXX

Comments

[AmericanFamily]

Good for you for writing to those assholes.

You should also CC the letter to the hospital's board of directors as well as your state's nurse liscensing board.

[Mary]

As a student entering the medical field, I think this is a letter that all health care professionals should read BEFORE they interact with patients. Your experiences are something that can teach the students patience and understanding when dealing with patients, especially those with disabilities or other circumstances which would be perceived by society as less than perfect.

I agree that you should send this to the hospital board for the purpose of teaching the hospital staff to be more accepting and to focus on helping their patients rather than scrutinizing them.

I really admire your honesty and bravery. Thank you for sharing.

[Hala]

Bastards. Do send this, but proof it or have it proofed first. There are a couple of simple errors. I'll do it, if you want. You don't want to give them ANYTHING on you, you know?

[Sara]

You rock.

Proof it and send it. Send it to the hospital, to the board of directors of the hospital, to the nursing station on the OB floor, and to the LCs office.

[shannon]

Definitely send it. Send it to me first if you want an editorial read with comments.

[vmc]

I can't imagine anything worse than the environment those terrible comments created. How could they think you wouldn't FEED the boys? What kind of judgmental person like that even goes into nursing? The nurses and the lactation consultant at my hospital weren't terribly friendly or helpful either but no one threatened me like that. You must feel doubly (triply?) proud of your parenting accomplishments now that you've hit this milestone and your boys are so beautiful and thriving so clearly.

[cherylc]

That is an amazing letter. It kills me. I agree with everything already said, and I think you are amazing.

[Angela]

Send it
Great letter

[Irene]

Hi,
I just found your blog and read a couple of your posts. I think you are really really amazing.

[Mary]

Send it- those jerks- it just makes my blood boil when people suck so much. Ooh- and keep us posted if you hear anything.

[Elise]

Not that you need another vote, but mine is the same: proof it and send it.

But I also want to ask for your advice. In a few months, I'm marrying a sweet, funny, bright, spiritual, great-hearted, psychologically-minded, attractive, wonderful man-- a computer programmer like me--- who also has cerebral palsy and uses a power wheelchair. We hope to become parents asap, and we have asked his doctor for a referral to a disability-friendly OB/GYN.

But, until reading your post, I didn't think about how important the hospital maternity staff will be as well. (Though, from some of my mother's hospital experiences, it really should have occurred to me.) What I'd like to ask you is whether you have any thoughts or advice on setting ourselves up for success with them, prior to my being admitted to give birth.

And, thank you, too, for sharing your stories and your well-articulated point of view!

[LPN to BSN Nursing Grad]

I agree. This should be require reading for all nursing students and grads.

Something formalized would go a long way toward helping new nurses.

Thanks for the great information.