My nurses are complaining about you

King Diaper watching his Baby Einstein at bed time.
What I'm about to tell you is part confession and part making sense of something that has bothered me for a long time.  I'll preface every word with the fact that we love King Diaper's doctors and nurses more than anyone knows.  And, every person that has a sick child in the hospital for months will loose their cookies at some point.

Four and a half months into our hospital stay, I am taking what is a rare nap on a Saturday afternoon and receive this phone call, "Mrs. Strahan my nurses are complaining about you..."

I'll stop here and come back to that in a moment, but one must understand the following:

1.  Our son had been in the hospital since late September.  It was now mid February.
2.  After having him, I went back to work in two weeks.  This was the only normal thing in my life and was a good thing even though it was hard at times.
3.  I was working full time every day.  I woke up at 5, went to the hospital.  After which would get ready and work until 5.  Come back to the hospital.  Eat dinner during shift change.  Change clothes and go back to then go to bed and do it all over again.  
4.  I had been pumping breast milk every three hours around the clock for this entire time while working and spending time at the hospital.
5.  Because of stress and lots of other factors I was barely producing enough breast milk to feed him so was now taking a drug that is to help the body produce more milk.  Only, the side effects were depression.  There were days I cried for hours.  Many times to sleep at night.
6.  We were trying to help him learn to bottle feed which was not easy.  He cried uncontrollably at nearly every feeding.  Bottle feeding a baby that had been tube fed for so long is hard.  It's frustrating to the mom and baby and until he could take 8 bottles a day… there would be no discharge date.  He was taking 1 a day.
7. His breast milk was in short and dwindling supply because of the feeding pump being used to feed him during his other 7 feelings wasted a portion of his milk each time due to the pump being primed.  By the time I realized how quickly this was happening, 42 ounces were gone.
8.  To every nurse that ever took care of him, I said thank to them for taking care of him for that shift either in person or by phone.

Ready for bed!
So back to the phone call and complaining nurses.  Yes.  I had been upset.  Yes.  I had complained about the wasted breast milk.  Yes.  I was upset and most likely had not been pleasant.  I know that I had reached a point of being irrational really.

And,  this is a mother that had slept in her own bed 3 times since September of the previous year.  I had not had 8 hours of continuous sleep since before being admitted to the hospital on bed rest.  And during that time there had been a laundry list of complications and illness related to his prematurity.  

I had slept in the waiting room on Christmas Eve with my husband as his life hung in the balance.  He had been intubated and extubated numerous times.  He was finally off the vent but remained on high flow oxygen.  Another stumbling block that would not allow a discharge date.  And throw in the infections, withdrawals from the pain meds... I could go on here, but I think you get it.

So why couldn't that doctor understand why I was so upset?  She had that chart right there in front of her and knew the facts.  But, still there I was - on the other end of that phone call.

I can remember crying into that phone and trying to explain my side of it, how tired I was, and so on.  But at the end of it, what I still remember most from that conversation was "my nurses are complaining about you."

I left the Ronald McDonald house that afternoon.  I abandoned the idea of a nap and went to work.  As much as I wanted to see my son.  I didn't feel welcome there.  I couldn't face the people I had offended.  So I worked.
Boppy time and a nap!

Yes.  I went back.  Swallowed my pride and pretended it didn't happen.  But even now the memory of it makes me cry and still hurts.  

My mom reminds me when I am frustrated that they (the doctors or nurses) can't know how you feel or what you are going through.  They see so many sick children.  They can't think about how you feel.  Because caring for a child like King Diaper has lots of complications,  I don't always understand the reasoning behind the doctors decisions.  And some medical staff communicate it better than others.

To a mother with a sick child that has been there for months, the only thing she can control is a few diapers she is able to change, the time she is able to spend with the child, the breast milk she provides, and the bottles that she is prescribed to give him a day.  And how she reacts to it all.  

Admittedly, many mistakes were made on my part during that time.  Life is trial and error.  I managed to dust off and try to keep the crazy in the closet for most of time we had left there.  We were still nearly two months from going home.  So, I did have to face the unknown complainers for quite some time after this.  And where does a mother go from there when she is dependent on these people for her child's care 24 hours a day?

I just wanted what was best for our son.  That did not involve a kangaroo pump eating 42 ounces of his breast milk.  To a sleep deprived mother that was taking medication to help her produce more breast milk with a side effect of depression, there comes a point of no return.  I had reached it.  And I had lost my cookies.  

I don't think at that point I knew how to rationally verbalized my frustration.  Today, I could.  Then.  I could not.

And to a mother who was stressed and worried about her child, the cutting words about complaining nurses cut to the core.  If my husband thought I had cried before, there was not enough kleenexes in 3 counties for the river that poured after that episode.  

So now I'll rationally say what I couldn't say then, "I'm exhausted from trying to produce enough breast milk and work full time.  The medical staff has encouraged me to breast feed because it is best but the kangaroo pump is wasting some of his milk.  What can we do so this is not so frustrating and so that he gets the nutrition he needs?"  

And finally, to the nurses I offended, I am sorry.  Yes.  I said it then and am now saying it again.  Publicly this time.  I just didn't know what else to do because the only thing I could physically do for our son besides change his diapers and hold him was produce breast milk.  He hospitalized for his care 24 hours a day.  And I so desperately wanted to take care of our son and do what was best for him.  Having a team of doctors and nurses care for your child around the clock is difficult and unnatural.  

I had hoped to have a healthy baby that I would snuggle and take pictures with after delivery.  I had an idea of  a smiling family and making happy memories.  Yet, I gave birth in fear to a tiny baby that came into this world making one tiny kitten like cry to be silenced by a ventilator for the next four months.  All the while, I was longing to hold our son and be the mother I had envisioned at the start of my pregnancy.  

It is easy to get lost in good intentions. The phrase, "the road to hell is paved with good intentions".  And I felt like I spent 6 months in hell at the hospital.  And some of the good intentions were guarding our sons breast milk like a momma cub and others were those of a frustrated doctor protecting her staff.

But at least we are home now.  And the complaining I hear now are the grunts and squeals over brushing teeth, washing his face and food he doesn't want to eat.  And it doesn't make me cry.  We just trudge on into another day.  Because I'm not hearing the complaints second had.  King Diaper makes them all quite apparent and in real time.

I'm sure that doctor had good intentions with her call.  She probably felt the need to appease her staff or get to the bottom of an irrational situation with an angry mother.  And while her intentions may have been good, they paved a quick road to hell for me sending me into a tailspin as we tried to survive the the last months of that journey.

I still see this doctor for visits.  And I just smile and discuss the necessary items at appointments.  In the year and a half since we came home, I finally feel like myself again.  I'm certainly more rational than I was at that point.  It is hard to think back to that time in my life and realize how stressed I really was.  But, I know it is true.  And the remembrance of that phone call anchors that for me.

My advice to any mother of a preemie baby that may be reading this…you may in fact reach a point where you loose your cookies.  Just remember that it is normal.  Try to choose your words carefully and make a point to say when you are frustrated that your frustrations aren't personal.  It is about the situation.  I tried to do this during our hospital stay.  But, between diapers, alarms, shift changes, working, pumping and all the rest of it….sometimes that detail gets lost.  And those intentions aren't meant to be hellish….its just the reality of a hellish situation.