Wednesday, March 9, 2016


A simple cold is how it all started.  No one else was sick in the house except DH who had a stuffy nose and a raw throat.  The Saturday his brother and his family were visiting BabySam started to have difficulty with eating.  She was gaging and sputtering which she hadn't done in a while.  Sunday she progressed to the point where she slept in the baby swing and I slept on the floor next to her.

Monday I noted mid-afternoon that she wasn't eating well and I had started to wake her up for feedings.  She didn't have a fever- just a cold and not much interest in eating.  DH being a worry wart told me to call the doctors. I left a message with the nurse: no fever, low intake of food, stuffy nose, but still had wet diapers.  She was premature after all, her lips were getting dry, and she was more lethargic.  The nurse told me to come in "just in case."  So I did.  The doctor checked her out and noted her respiration rate was up.  she almost sent us home when something made her take a second look.  "I'm going to send you up to the ER.  They will likely place her on observation for the night and send you home."  Its just a cold I thought.

The intake nurse at the hospital wasn't worried.  Her respiration rate was elevated but she had a stuffy nose.  Her O2 saturations were normal.  She made me feel silly for coming in.

By 8PM that night I was settling into what felt like a jail cell.  A bed, a crib, a tv on the wall.  The door was closed because we were in isolation.  She had just come back with a positive RSV test.  The nurse was rude and I wanted to cry.  The nurse offered to feed her while I moved my car and got something to eat.  When I returned my baby was sleeping with nothing but a diaper on and wrapped in an old blanket from my diaper bag.  Oh I forgot to mention in the ER they put an IV in her HEAD!  So that night I struggled.  I put her down she cried.  I picked her up she slept.  I moved her and alarms went off.  The hat kept slipping off her head and I struggled to keep her untangled while putting the hat back on to keep her IV in place.  The nurse was annoyed that I kept setting off alarms.  At some point around 2AM her IV pulled out.  I honestly dont know if she did it or if I did it but somehow we managed to get blood everywhere.  Sometime around 3AM I asked the doctor since she was on monitors if she could lay on my chest so that we both could sleep.  Every 2 hours someone was in doing something and before I knew it 7AM arrived and so did change of shift and the parade of doctors started.

At my bedside was my least favorite of our three pediatricians.  Another night was going to be needed, but she was "moving in the right direction."  Another IV was placed later in the day.  This IV was poorly placed and by the end of the day had come out.  She was listless and having damp diaper.  She was grey and not her beautiful brown.  The staff kept telling me how pretty she was and I kept telling them how grey she was.  They didn't get it.

At some point in these days her first nurse came back and told me she didn't realize BabySam was adopted that first night.  She knew about her NAS and it "didn't add up."  For me what added up was how rude she was to me.  How she was OK with leaving my baby wrapped in a dirty old blanket naked in a crib alone.  She didn't apologize but she did acknowledge her assumptions which I guess was half the battle.  As a practitioner we all have jumped to conclusions based on our biases we have.  I understand that but I try to keep my biases to myself.  I treat my patients all as if they are my family because that is the level of care every person deserves.  I did at least acknowledge how I understood how she could come to her bias.  I also told her she wasn't the only one thus far and that at least I appreciated her sharing that with me.  I didn't tell her it was OK though- because its not- ever OK.  My girl deserved the best care that nurse could provide because any transgressions I have as a parent have nothing to do with my daughter.  In this case the transgression she though I had didn't even apply to me- but thats not the point.

That night she dropped in her 02 saturations for the first time meaning she wasn't getting enough oxygen.  They placed her on 02.  By morning she perked up again.  The doctors begrudgingly placed another IV because she was "having good diaper" and was still drinking.  That afternoon she had only taking in 8 oz- in what world is it OK for a baby to go 14 hours with only 8 oz of intake.  When the evening staff came in at 7 I was happy it was the same team that had been with her the final two nights.  She was clearly decling to me but to the day staff they were feeling like she was improving.  The evening staff decided to move her to the pediatric ICU (PICU).

Again we transitioned. This time I sat on a cot next to her huge bed with so many monitors and wires I didn't know what was what (remember I work in health care).  Again I felt overwhelmed.  The new treatment she was getting was one step away from intubation (what I learned later was she was really hours away from intubation).  She finally looked comfortable- her chest wasn't pulling and labored for each breath she took.  The next two days she slowly weaned off of the breathing treatment and oxygen.

We again were transferred back up to the pediatric floor.  The team was stand offish.  I'm not sure if its because they were unaware of her adoption status (which really shouldn't matter) or if they were just overwhelmed with how busy the floor was - I will never know.  She clearly was in pain.  She finally had enough fight in her that every 10-15 minutes she was crying and I was putting her nuk back into her mouth.  At sometime around 3:30 AM she vomited everywhere because she was coughing so hard.  Our pediatrician was very firm with me the day prior that she didnt allow tylenol for babies under 2 months at home as it could "mask a fever"  I get that but my baby still feels pain.  She may not remember this episode 2 years from now but currently she still feels pain.  When she came in that morning I told her that I though she was ready to go home but we were going to need an order for Tylenol.  She was agreeable.  I am not sure if the nurses had told her what I told them - I wasn't going anywhere without an order for Tylenol.

Baby Girl nearly knocked me over in excitement when BabySam came home.  She held her and gave her a check up.  Once content that she was OK she moved on again.  She clearly has a new love for her sister that I though already was strong.  I think this experience made her realize how much she loves her.

So its all behind us now.  Over all our experience was amazing.  We had one nurse that was an adoptive mom herself.  The Ronald McDonald House room at the hospital provided me with coffee, showers, and company.  Our night team was amazing and I credit for preventing the need for intubation.  We had our hiccups along the way like our initial nurse or the nurse that told me "she looks asian, not oriental asian, but maybe Indian Asian- you know?"  We also had some amazing experiences like my in-laws came up for the final weekend which allowed DH to visit saturday afternoon and be there at discharge on sunday.

The moral of this story is for a premature little girl there is no such things as a little cold.  Pale is different for brown babies and its important to continue to repeat yourself until someone listens (even if the other 10 people think you are crazy it just tasks one person to listen).  I have an amazing family and two awesome little girls.  I love being home and sleeping in my own familiar bed.  I dont mind hearing her cry and I'm glad to see her feisty self back.

We are Home

We arrived home at 2AM Febuary 7th.  A coworker form a previous job paid for a plane ticket for me to fly down Feb 6th.  I purchased and flew out the same day.  I arrived in PA around noon and couldn't get to the hospital fast enough.  Baby Girl discharged from the hospital at 6:45 PM which cleaerly annoyed the nurse she had for discharge since change of shift occured at 7PM. We needed to change/feed her as we were not expecting to discharge until 8PM.  Hospital policy is that a baby can't leave the NICU in the arms of a parent and so the nurse had to stay to provide the transport from the unit to the car.

We hit traffic right away and she wasn't a fan of stop go traffic.  She clearly was still having some symptoms of withdrawal but nothing that required additional medication.  When we stopped at a rest stop in NY to change/feed her, her tone was so strong and she was inconsolable.  She had (and still occasionally does have) this behavior where you put the nipple of the bottle in her mouth and she is so dysregulated that she leaves her mouth open and shakes her head back and forth.  She screams but can't close her mouth on the bottle to start sucking. This has improved but when she is overly hungry this behavior still emerges.

Her big sister was ecstatic to meet her.  When Baby Girl came home on Sunday morning BabySam was in her crib sleeping.  Baby Girl stood and watched her quietly in the dark.  Once BabySam woke up she got her step stool out so she could stand at the changing table so she could help.  She held her so carefully and it was if her lap was the perfect size for her little sister.  She fed her and was so gentile with her.  She did have one moment where she became frustrated with me and I think it was a brief test to see if I still loved her.  Beyond that the bonding between the two of them has been amazing.

Week one of Baby Sam being home Baby Girl got strep throat.  We had to keep them separated until Baby Girl had been on antibiotics for 24 hours.

DH's parents visited and were amazing with us and her.  I have been truly amazed at how they responded this time.  I know they have done it before now but its been a long time since I have had a visit with them and felt like I still liked them at the end of the visit.

DH's brother and sister-in law visited the following weekend.  The visit went well with a few minor exceptions.  We have decided that since our little girl is brown we can no longer stay where we live.  Our plan is to move closer to where my parents live which is in a more diverse part of the country and there are more families that look like ours.  At one point his brother challenged me on why I wanted to live somewhere that wasn't so white.  He equated a white area with lower crime.  I had to let it go.  He also waited until after DH went to bed before he pressured me for more information on our daughters ethnicity.  I learned later that DH had shared that her birthfather was unknown.  Had I known this at the time I may have been more crass with him.  Obviously if we dont know half of her genetic make up we DONT KNOW.  DUH!!