What I thought I knew...

It’s 1:30pm on the Monday of the week my maternity leave is supposed to end. I only took 6 weeks because I thought for sure that I would be anxious and stir crazy to get back to work. Instead, I am currently staring down at my son, who for the moment, I am too scared to hold because the thought of getting him too warm or giving him a fever are running through my mind, over and over and over again.

It has been this way since my husband left for work at 8 this morning, except I ignored the feeling for the first few hours. When I couldn’t ignore it anymore I gathered as much mental strength as I could and took his temperature with a new thermometer which measures through his ear.

99.6.

Check again.

99.7

Let me check his other ear.

100.0

Let me check that ear again.

99.5

I burst into tears, experiencing overwhelming panic and flashbacks to our time in the hospital.

I text my husband- telling him that I think Bear has a fever. He responds asking:

“Is he eating still? Is he acting normally besides his temperature? I don’t think it’s a temperature until it’s 100.4 in a baby his age. Try to calm down and we will just keep an eye on him. Do you need me to come home?”

I get online and research baby temps- only to read that ear thermometers typically are .5-1 degree higher than actual internal body temperature. I try to slow down, take a deep breath and believe what I am reading. I take out an underarm thermometer- test again and it’s 97.6.

At this point, my little guy is staring at up at me- likely confused.

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This wasn’t the first time this has happened- in fact, it has been happening in various forms since we were discharged from the hospital a month ago.

The day I gave birth to our son, we received a call from the NICU floor, while still in the hospital, that he was going to be staying down there for the night due to low glucose levels (low blood sugar). They came to take him from us at 11:30 at night and I was devastated, confused and still feeling huge rushes of pregnancy hormones.

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Everyone kept reassuring me that this was not too serious of an issue and usually resolved itself once he gained some more fat and learned to regulate it on his own. Could resolve within 1-2 days or sometimes a few weeks but that’s longer term scenario.

So we went on. I would pump to give him food, shuffle my way through hospital halls in the wee hours of the night, drop off my milk to the cooler in his room, see him briefly and shuffle my way back to my room on the next floor. It was hard to see him with IVs and wires coming out of everywhere- but we remained optimistic. Those initial days were such a blur I can hardly remember them.

Sunday came- it was time for my husband and I to be discharged. They were very insistent we leave by 3pm- even though our doctor said we could stay until almost midnight. Unwillingly at 2pm we packed our things, including the clothes we had excitedly packed for our son. I cried knowing we weren’t leaving as a family, knowing we had to leave him behind in a hospital with strangers.

His blood sugar levels were improving but very slowly. To test blood sugar, they have to prick his heel, draw blood and run a drop through a machine. They decided to put in a central line (invasive line that enters through his belly button leading directly to his heart) to assist in boosting his sugars.

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3:30AM- I call the nurse to hear how his sugar had been that evening. She doesn’t come to the phone but I am told a nurse practitioner will call me back. I, immediately knew something was wrong. She calls me after what feels like ages to let me know Bear had spiked a fever…and proceeded to share that fevers at this age can mean anything from a brain bleed to an infection and we needed to start ruling these out.

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Test after test after test. Culture after culture. Over the course of a week, Bear ended up having 2 blood transfusions, a lumbar puncture, scans of his brain, his lungs etc. to rule out extremely scary possibilities. It was like torture waiting on results that would take days- there are tests I know I am not remembering yet he remained tough like a little trooper.

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At the end of the week, we finally landed on MSSA- a staph infection which was introduced to his bloodstream through the Central Line put in- in a non-sterile environment. I will admit, it was extremely difficult to not be infuriated. In fact, it still is hard to not internally (and externally) lose it when I think that as a result of human error our son had to endure all of this torture (his heels endured at minimum 96 pricks as we continued to try and improve his blood sugar- which was likely remaining low due to infection).

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Throughout this time I could feel myself mentally slipping further away than before. As if postpartum hormones were not enough…the stress of going to the hospital, hearing any bad news and experiencing watching our son go through all of this felt more than I could handle. I was watching my husband, family members and friends trying to pull me out of it but were also meeting me with understanding where I was at.

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Shoutout to my amazing husband who hit every curve, bump and hill of this ride with me but instead of crumbling pulled us through.

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In addition to this- we had a variety of hospital workers during our stay- some incredible, that got us through our darkest days when we had no idea what was wrong or how to help…and some that clearly saw this solely as a job and whose bedside manner left much to be desired.

We were met with many failures in the healthcare industry, including poor equipment, poor processes, generalized care and lack of consistency…nurses who told me they “hadn’t had their coffee yet and couldn’t remember”, “were waiting till the last minute to get their flu shot because they hate doing it and have had to come to work sick before” and a nurse who had the audacity to tell me that “you are lucky- this could be a lot worse”. I don’t feel lucky and I don’t need a stranger to say that.

However, we were also met with incredible caretakers who cried with us, kept us informed and answered our questions with friendliness/compassion and patience. We had one nurse who we were fortunate enough to have for 4 days that I am convinced got Bear over the hump. She had individualized care, helped us feel normal and even did “sugar” dances with us whenever he passed another test.

For her and anyone like her, we are forever grateful.

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2 weeks after he was born we were finally released to go home. I still feel plagued with some of the thoughts, flashbacks and compulsions that have risen up as a result of the stay..but it’s getting better, one day at a time.

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Any negativity does nothing for us now. To be mad, to not forgive and to hold resentment - is something we cannot tolerate in our home.

I’m writing this for a few reasons:

  1. It is cathartic to get this out and to not have to verbalize it in person anymore.

  2. If there are other moms struggling with postpartum PTSD, Depression or Anxiety, I want them to know they are not alone.

  3. To release it and recognize that this may be part of our story but it no longer has hold on our lives.

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