Tuesday, August 18, 2015

Guest post: How hard things can get

I am a more than full-time family doctor. I manage my own office and do extra urgent care shifts on weeknights and weekends. I have a very busy, demanding and wonderful two year old son. I am paying off my mortgage and helping my husband get started with a farming business. I am struggling to keep up all my medical skills, applying for continuing education grants and trying to stay healthy and balanced...

I thought my life was chaotic enough... then...

I find myself pregnant with my second baby. 8 months of a very difficult pregnancy follow, forcing me to eliminate night and extra shifts. I don't sleep and suffer from severe heartburn later found to be due to polyhydramnios.

My baby is born a month early and at 24 hours, I find out he has a major birth defect, undiagnosed through the pregnancy, an extra connection between his trachea and esophagus with no connection to his stomach.

I am discharged in the middle of the night, sleep deprived for 48 hours and severely anemic with my son to a children's hospital. I have to drive myself, and it is heartbreaking to leave the hospital with your flowers and gifts but not your newborn baby after giving birth.

We survive intubation, days on a ventilator, swelling, emergency surgery, jaundice, phototherapy, catheters, central lines, ng tubes, countless needles and tests to look for other problems. He still can't swallow and is aspirating. At a family meeting I learn his vocal cord was paralyzed at some point during all his testing and procedures. It should heal but over weeks or months. Otherwise he may need a gastrostomy tube for the next year.

As I drive in daily to visit him in the NICU, nearing his 1 month birthday, I cry. I blame myself even though his doctors tell me it is not known why this defect happens. I blame a sinus infection, not enough nutrition, exposure to farm pesticides I might have had on a hike...the list goes on. I can't let it go.

I sit in the NICU and hold him, wondering what the future holds. Nobody can predict how things will progress with him. All we can do is take it day by day, waiting to see if he stops aspirating and starts swallowing on his own- then his TPN and NG tube can be removed.

As I sit in the NICU, every little thing scares me- an increased heart rate, no weight gain, a rise in temperature, I usually get so worked up within an hour that I have to leave and let my husband sit with him. Normally I am calm in this environment, but that is with other babies, not my own.

And the stress of the situation is affecting everyone around me. My office staff don't know how to book my office, when day by day, I need to be in the NICU and I don't know how long it will last. One staff is billing me for hours she hasn't been at work, another is demanding a raise (could she have picked a worse time)?

My husband is snapping at me for asking questions and his parents are telling him to give up on his farming business for now to devote himself to the care of his two sons. I am the breadwinner for the family, so if we need to bring home a high-needs baby, he needs to be the one to give up work opportunities for now. I feel guilty about this too.

My intent had been to have the baby and return to work the next week, as I had done with my first. I never thought to make a plan B. So I post ads for a locum and a babysitter for my older son, but as of now, no replies to either. And my patients don't understand why the office is closed down-they just want their doctor back.

I look back to all the times I thought I had so much stress in my life, school and residency especially, and they don't compare to this.

Today the first good news in a long time came. I have won two awards for continuing medical education courses. I will also have a chance to work as a locum in a place that I have wanted to work for a long time. This hint at my past organized life as an FP is so reassuring when the rest of my life is so chaotic and the future so uncertain.

I tell myself to focus on the positive and not worry about what can't be changed. This is what I have told past patients and this is what I do. I am learning a lot just sitting with my son in the NICU. I am donating milk to other babies. I am spending more time with family. I am learning empathy and how it feels to be a patient's mom. I have some of the best night-time babysitters around- the NICU nurses. Most of all, I know that in another time or place, my son would have died from this now corrected birth defect.

If this is how hard things can get, I hope that eventually things will swing back just as far in the other direction. Once they do, I will have to write again.


  1. Hugs to you. My son was born at 28 weeks and spent 12 weeks in the nicu then scn. He had surgery at 2 weeks and again at 2 months old. It's hard to understand the fear and uncertainty unless you've been there yourself. Try to find time to take care of yourself. eat, exercise, sleep as much as possible. Things will get better. My son is almost 4 and doing well with his nicu days in the past. I'm happy to chat by phone or email.

  2. I found this website as I was trolling the internet as I try and manage my life after my baby became severely ill. I wrote a long post and then could not publish so I will be brief.

    My baby was born almost dead, required cpr and treated in NICU for culture negative sepsis. We had a difficult transition after that and then he got sick again with strep pneumo bacteremia (that was unfortunately ignored by one of the nurses at this hospital I worked for) and subsequently meningitis and almost died AGAIN.

    I left that job, moved close to family and our family is trying to recover. My son suffered brain injury, hearing loss and we are in therapies and seeing almost every specialty in consultation. I have to stay home with him during the week while my husband works and I will work on the weekends picking up shifts.

    We were on top of the world planning for our son and have had a rough road ever since. I feel guilty that I am nervous about being a "stay at home Mom" and feel that my independence has been taken away. I worry about my son constantly as well. I try to read everything I can about fostering his development especially after his fragile, infant brain was injured by the infection.

    I take things day by day and do not add any more pressure. I have few expectations for myself. wake up, take care of my son and be a supportive wife. Set small goals and pat yourself on the back.

    Your post reminded me that I am not alone and others have deep struggles as we do. I hope your storm passes and there are many sunny days ahead. :)

  3. My 2nd has transposition and a VSD and had a very rocky course. 2 open heart surgeries instead of just the one we planned for. Weird post-op complications with a prolonged PICU stay. I remember sitting in the PICU, wondering when enough was enough and how much more we could take. Words can't describe how the uncertainty and lack of control of any sort made me feel. She just turned 5 a couple weeks ago. Things aren't perfect now, but they are good - something I couldn't imagine back in those dreadful, soul-sucking PICU days. My thoughts are with you, your son and your family.

    Agree with Sophia's recommendations above. Also, ask for help, and take the help that is offered.

  4. I had done everything right. I had lost 26 pounds, to get pregnant. I made sure I ate right, exercised, managed my sugars, did not drink a drop of alcohol and no more than a cup of tea a day. I got all the tests done including get my cervix tested at 19 weeks. We were going to be perfect. And then at 20 I lost my baby. Just like that. No one can tell me why. I have poured over the reports hoping to find out where I went wrong. I still think about it. It's a feeling that doesn't go away.

    As I started to read your post, I wanted to tell you that the blame game does not help. Upwards and onwards. Instead you have reminded me that I still have hope. And a great attitude such as yours is what will get me through this.

    Thank you and Good luck. I'll be looking out for your follow up post.

  5. Wow. I have deep empathy and admiration for all the posters above. I don't know how you do it, but you ARE doing it. And you are surviving. It's true, as one person mentioned above, that I cannot understand, as I have not been there. Very true. But as an "outsider", I want to send you all love, strength, and Hope. You are all in my thoughts and prayers. What beautiful mothers you are.


Comments on posts older than 14 days are moderated as a spam precaution. So.Much.Spam.