NEK Moms: Blood Draws for Babies

Today at NEK Moms I've written about tips for making a blood draw easier on you and your baby. For example, did you know babies need to be well-hydrated to make it easier to find a vein and get the blood flowing? Learn more at NEK Moms!

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.

Lessons from the NICU: Strength

Sweet Pea's first 90 days of life were spent in the NICU at Dartmouth and Boston Children's Hospital. Tomorrow she'll be nine months old and we will celebrate having been home for twice as long as we were in the hospital. Although it's been six months since we left the hospital, it often feels like it was just last week.

I often think about the things that I learned (about myself and about life in general) from spending so much time in the hospital with her. Over the next few Friday's I'll share some of the insights I had from that time.

Glacier National Park - a pic from our honeymoon

I never thought of myself as a particularly strong person. I've survived my share of crap in life, but I've done it with a lot of worrying and crying and lost sleep. However, I became strong - or perhaps just aware that I am strong -while we were in the NICU.

When Sweet Pea was born at 32 weeks gestation I thought we were doing pretty well. The docs were able to stop labor at 28 weeks and I successfully baked her another month (while on bed rest). When she was born on August 5 after 18 hours of scary labor (more on that another time) she was a good size for her age, she had 9s for her Apgar scores, and she came out screaming. I even got to hold her after they got her cleaned up!

Later that night I got to breastfeed her and she seemed to be doing great. Although sleep was interrupted all through that first night because I had to pump, I felt good knowing that Sweet Pea was healthy and had hoped we'd be part of that lucky few who get to take their babies home from the NICU before her due date.

Day 3

The next day we were told that she was slightly jaundice and needed to be kept under the lights. We understood that this was nothing out of the ordinary and actually thought her "sunglasses" were cute; she looked happy under the warm lights in her little incubator. My husband and I got to kangaroo with her off and on over the next few days - although not for very long because we wanted her to get as much photo-therapy as possible so we could take her home. I continued to pump away and would offer her the breast on occasion. On day 5 things started to look bad - this is what I wrote on my personal blog:

We spent the day with Caroline but she wasn't doing so hot. I tried to nurse her but she wasn't at all interested, instead she just fell back to sleep. They continued to feed her my milk but she stopped digesting it and thought perhaps she had a slowed digestive system from the jaundice. We left around 5:30PM and I just had a bad feeling. She was so out of it all day but I am hopeful tomorrow will be better.

Day 5 - under the lights, but we'd been moved out of the critical side of the NICU

Around 9PM that night the NICU called to say that after we left Sweet Pea started to have a lot of As & Bs (apnea and bradys). She had also started throwing up and she was very lethargic. (To this day I don't understand why they didn't call sooner.) We rushed to the hospital:

The doctor's suspected an infection of some sort so they started antibiotics. They took blood and urine for a culture, took x-rays, and did a spinal tap to check for meningitis.  ...She was continuing to stop breathing and her heart kept slowing down, in addition her blood sugar levels were sky high. As we were standing there my nightmare came true. My poor baby would not breathe and turned an awful shade of purple and we were told to leave her area. They tried a C-PAP to get her some air but it didn't help, so they had to intubate her.

The "nightmare" I spoke of was literally a nightmare I had had the night before. I dreamed that Caroline had died in front of me.

Day 6

This was one of the longest nights of my life. Throughout it all I kept telling myself that if I could survive this, I could survive anything - and that mantra came in handy as we experienced similar trauma two more times over the course of Sweet Pea's hospital stay.

Within a week of this event Sweet Pea would be diagnosed with NEC (necrotizing enterocolitis - which, as it turns out, she didn't actually have; instead she would later be diagnosed with a stricture in her sigmoid colon and would require surgery to remove it) and central diabetes insipidus. She would have her first surgery to place a subclavian IV line, her first ultrasound, and her first MRI. We would also experience the DDAVP drug shortage for the first time - we had to wait a day for a diagnostic test because the hospital couldn't get it in.

Things would get worse before they got better, but today we are home with our precious baby girl and she is going great!

She's a reader, just like her Mama!