Lessons from the NICU: Patience

At one point during our NICU stay it seemed that every baby around us was a full-term baby, and they were all there for minor (at least to me) issues like jaundice. They'd stay a day or two and then would head home completely healthy.

Because I could hear everything from the "cubicles" surrounding my baby I knew what was happening with all of these neighbor babies and could easily hear the complaints from their mothers. Many of these moms were upset that they could not immediately take their baby home, even though they were only expected to stay for a day or two. At this point I'd already been in the NICU with Sweet Pea for over a month and it seemed like we were making no progress toward getting her home.

Often I could not nurse Sweet Pea because she was on bowel rest - the result of not knowing what the hell was wrong with her digestive system. (Eventually Boston Children's did discover that she had a stricture - scar tissue - blocking her sigmoid colon. But at this point she would stop eating and pooping every 5 days and we had no idea why.) She had just gotten over an infection and was starting to eat again, although she was having trouble remembering how to nurse so I was at her side all through the day so that I could practice at every opportunity.

One day, I got to the NICU early enough to snag one of the "nice chairs" so that I could be comfortable nursing and kangarooing with Sweet Pea throughout the day. Just after noon however, one of the nurses came over and told me she needed my chair for a "nursing mother."

Let me tell you how badly I lost it. I gave Mean Nurse the chair (because I knew they were coveted and I did have it all morning) but then immediately burst into tears. Our nurse overheard and went searching for something for me to sit in, finding what was essentially an office chair. Great. I'd really be able to nurse now. I just knew that my chair had gone to one of the mothers with a term baby and that they were going home while I'd be stuck forever in the hospital.

Poor me.

That night I asked if we could go home. Not home, home. But I wanted to be transferred to our home hospital - which has no NICU. I just could not stand to feel stuck any longer, and my heart couldn't take watching any more babies go home while we sat and waited. To my surprise, the docs thought it would be okay. They thought Caroline's main issue was just to re-learn how to nurse and then she'd be fine.

This is how your transport a baby in an ambulance!

Within a couple of days we were at our home hospital. I thought it would be great.

It wasn't.

I'll skip the details but it turned out that 5 days after she had started eating again she was sick. My husband had planned a BBQ at our house to thank all the people who had been helping us out (I did not think this was a good idea - too soon to celebrate in my mind), and while we were at our house our daughter began fighting for her life. The infection that ensued was so nasty that it caused her to stop breathing. To this day I am extremely grateful to the nurse who noticed what was happening and who called for help.

We had some warning that things weren't going well. The whole time we were at our home hospital Sweet Pea looked terrible. She was having terrible gas and diarrhea. She refused to eat and would throw up anything that we forced into her through the NG tube - including her meds. There was faulty medical equipment at the hospital and so the nurses weren't sure at first whether she was really having problems or if it was just the equipment acting up.

The night of the BBQ Sweet Pea had to be intubated so that she could breath and Dartmouth was called to come pick her up. This was not a problem a level 3 hospital could manage.

After a very long night of no sleep (now our second most terrible night ever), we made it to Dartmouth and Sweet Pea was started on antibiotics and tests were being run to determine the problem. However, I learned my lesson: this was not something that I could rush. It didn't matter that I wanted her at home, she was not ready. It didn't matter that I was upset about the term-babies who were going home all around us, Sweet Pea was not ready. I needed to be patient with this process and I hadn't been. Now it felt like we were starting over.

No one with a baby in the NICU wants to be told to be patient, especially when those around you are going home while you continue to wait. But patience and time really are the most powerful warriors.

Life is pretty good now!

Read my first post about things I learned in the NICU here.

In support of Obamacare

Not that my opinion matters at this point in time since it's up to the Supreme Court to decide whether Obamacare will stay or get tossed, but I came across yet another reason to support the Affordable Care Act this morning.

Sonji Wilkes, a mother of three, wrote about her battle with lifetime insurance caps for the Colorado Consumer Health Initiative (which was re-posted at Moms Rising this morning). In summary, her newborn son was diagnosed with hemophilia - a very expensive blood disorder - and her husband's insurance imposed a $1 million lifetime cap on benefits. After only 18 months her son's medical bills already totaled about $750,000. What is a mother supposed to do in a situation like this? Her family considered multiple options - including getting divorced so that her son would qualify for Medicare as a single-mother. Luckily, Obamacare was passed and lifetime limits were done away with. Sonji is grateful that she is able to keep her child safe.

Although always supportive of Obamacare, after the early birth of my daughter I became more so. Similar to  Sonji, our daughter has amassed over half a million dollars in medical bills in the first eight months of life. With a lifelong disorder, she will require medical care and expensive medications for the rest of her life. We've been thankful knowing that she will never be denied coverage due to a pre-exisiting condition or lifetime caps and that she can stay on our plan until she has a job of her own or is 26 years old. These benefits  are important to all families, but especially to those who have sick children.

As I wait (rather impatiently) for the Supreme Court decision I plan to continue posting stories highlighting the benefits of the ACA. If your life has already been impacted positively by Obamacare please feel free to share your story! You can comment below or email me.