From NAIT to NICU – Part II

I finally saw some sunshine this week and it wasn’t just when I looked out of the window from Elyse’s NICU suite. Since I blogged From NAIT to NICU – Part I, Elyse made some great strides with her breathing, went brady-free for the required 48 hours and was finally allowed to come home with us on Monday. All in all, her birth and its subsequent events were a fitting end to a pregnancy plagued with worry, stress and unusual circumstances. I’m just glad she’s finally home and perfectly healthy.

Continuing on from last Thursday’s post, below is a brief summary of what the last two weeks have been like for the Henshall family: 

Days 3 and 4 (Sunday, February 26th and Monday, February 27th): Jenn’s on the Mend, while Elyse Continues to Spell

Since I was beginning to feel better (minus the nagging headache that began after my hemorrhaging episode on Friday night), I spent the better part of both Sunday and Monday visiting Elyse in the NICU so that we could practice nursing and begin bonding. Elyse was a pro-latcher right away; even for a 37 weeker. And since I had breast-fed Clara for nine months, I felt much more comfortable nursing my newborn daughter. It’s amazing how much confidence you have as a parent the second time around.

The monitor that tracked Elyse's heart rate and breathing saturation. Even when I wasn't in the NICU, I could hear it going off...

Although we were having much success on the nursing forefront, Elyse continued to spell, or have bradys. If you remember from last week’s post, bradys are times of very shallow breathing. During Sunday and Monday after her birth, Elyse was having quite a few bradys while she slept. So, she had to stay hooked up to a monitor in the NICU until she could go brady-free for at least 48 to 72 hours. Every time she had another brady, the clock would reset and we had to wait another 48 hours or so. Since I was being discharged on Tuesday, we were hoping that she’d grow out of her spells by then, but unfortunately, Elyse was apparently quite comfortable in the NICU and continued to have episodes. We were reassured by the NICU’s attending physician that Elyse’s breathing was very typical for a LPT, or late pre-term baby.

Miraculously, my headache finally disappeared on Sunday night. I had been battling it for two straight days before I finally felt some relief. Let me tell you, the Percocets and the Motrin that I had been popping since Friday afternoon couldn’t even touch this headache. I’m not sure if it was the combination of the blood loss, the spinal I had during my surgery on Friday and/or the broken sleep (my god, you cannot rest in a hospital at all), but it was the worst headache I’ve ever experienced. It hurt so badly that oftentimes I could only muster up enough strength to go downstairs to nurse Elyse before having to return to my room to lay in bed with my eyes closed and an ice pack on the back of my neck. So you can imagine how great I felt when the darn pain finally lifted. I took advantage of this temporary relief (yes, unfortunately, it was only fleeting), by making some phone calls and catching up on my email. However, a few hours after the throbbing and fog subsided, I could feel pangs of  pain behind my eyes once again — the headache was trying to make a come back. By Monday morning, it was back with full-force and I felt worse than I had in days. When the on-call OB came to check-up on me early that morning, he suggested a “quick fix” to my head pain — a blood transfusion. So, since I had a pint of blood waiting for me at the blood center (if you recall, I donated a pint on the Wednesday before my surgery in case Elyse needed my platelets), I decided to reclaim it. Between the headache, the fatigue, the fog and the fact that I had been as white as a ghost for days (yes, even white for me!), I had, had enough. So, I had the nurse make the arrangements for the transfusion to take place that afternoon. I knew that I couldn’t go home feeling the severe effects of anemia with two daughters to care for.

It took less than an hour for the blood to be transfused back into my body. After 33, five-plus hour IVIG infusions over the previous four months, this one-hour transfusion was a breeze. By the time the pint had been put back in, the color had returned to my cheeks and my head was feeling better. I think the best medicine that afternoon, however, was the visit from Clara. Seeing her little angelic face always makes the pain go away.

Day 5 (Tuesday, February 28th) – Day 11 (Monday, March 5th): Home Again, Time for Double Sessions

Elyse's whiteboard on discharge day!

After my own CBC showed that the anemia was getting better (thank you, blood transfusion), I was discharged from the hospital on Tuesday afternoon. Unfortunately, Elyse was still not well enough to come home. Thus began a very stressful six-day stretch in which I split my time between home and the NICU. After a day or two of shuttling ourselves back and forth to the NICU to spend time with Elyse, Taylor and I finally settled into a routine. Here’s how it went (in case you’re wondering why we dropped off the face of the planet for a good week or so):

  • Each morning we’d get up and out of the house in time for Elyse’s 9:30 a.m. feeding.
  • After her feeding, we’d race back home, where I’d shower, eat lunch, play with Clara for a bit and get ready for my 10-11 hour shift by Elyse’s bedside.
  • I’d spend most of my time in the NICU feeding Elyse, resting with her on my chest, blogging and catching up on emails and things that I’d missed since giving birth. I’d take a break at dinnertime and either eat in the hospital’s cafeteria or take some Au Bon Pain take-out up to one of the NICU’s family room, as you weren’t allowed to eat in the patient rooms. I even started walking laps in the lobby one evening to loosen up my tight joints and muscles. Since Taylor was at home with Clara most of the time, I had plenty of visits from my parents, in-laws, and siblings to keep me company. And I even dragged my parents to the hospital cafeteria with me twice. :0)
  • Each night around 9:30 or so, Taylor would return to the hospital with Clara to pick me up (I couldn’t drive because of the c-section) after my last nursing session. Clara loved to wreak havoc in Elyse’s room by touching everything in sight (stethoscope, baby scale, you name it) and visit the fish in NICU’s children’s play area. Funny story: One night I brought her into the bathroom with me while Taylor spent some time with Elyse. By the toilet was a long, thin red cord with a sign that stated to pull the cord if you need help (remember, this is a hospital bathroom). I found out earlier that week, while I was still a patient, that if you pulled said cord, the entire floor comes running to your room. Oops. Well, speaking from experience, I told Clara not to touch the cord. She, of course, said, “OK.” I turned my back for two seconds to wash my hands, and you guessed it  — she pulled the cord. I flew out of the bathroom and into the hall to reassure the third floor NICU staff that everything was ok. All the while, I did my best to ignore the flashing lights up in the ceiling that had been activated when the cord was pulled. Oy.
  • Because she was nursing, I tried to be at the hospital for five out of Elyse’s eight feedings. I left the late-night feedings to the nurses, who’d bottle feed her with either formula or expressed breast milk. But, don’t be fooled into thinking that because Elyse was being cared for at night, I was off the hook. Each night, I’d get up every three hours or so to pump. This helped increase my milk supply, while also offering Elyse the benefits of breast milk.

    Taylor catching up Elyse in the NICU.

As you can imagine, this new schedule caused quite a bit of strain on our family. I missed Clara terribly, seeing as since Elyse’s birth, I had been spending almost all of my time at the hospital. I was tired, frustrated and just wanted to bring my baby home. As Clara had also been a NICU baby, Taylor and I were fairly comfortable in our roles as second-time NICU parents. We quickly remembered how to scrub in and participate in Elyse’s care times (meaning that when we came to visit, they’d let us take her temperature, change her diaper, and feed her). But, it’s never easy to leave your baby behind when you go home knowing that other people are caring for her in your absence. Additionally, you’re always being watched when you’re visiting your baby. The nurses keep checking in on you and the baby and have to document everything from ounces of food consumed to the color, consistency, texture and weight of everything found in Elyse’s diaper. As a second-time mother, it was frustrating for me to feel like a fish in a bowl while trying to care for my child, but I knew that it was only temporary and with a little luck, Elyse would be home sooner rather than later.

Elyse's NICU suite.

Finally, after about a week in the NICU, Elyse had a breakthrough. She stopped having bradys at night and now only experienced them while feeding every once in a while. Since I had been spending so much time with her, I discovered that she very rarely experienced any spells while nursing. However, she was prone to choking and spells while being bottle fed. After going almost 24 hours without a spell, Elyse proceeded to spell three times in one night while being bottle fed by one of the nurses. After putting one and one together, Taylor and I surmised that perhaps she was getting too much formula/breast milk during her nighttime feedings. Since, it looked like we finally had uncovered a pattern to Elyse’s behavior, we requested that her nighttime bottles be reduced to an amount that was more in-line with the quantity of breast milk I was producing. And, lo and behold, Elyse’s spells subsided for a period of 48 hours and she was finally discharged from the NICU on the morning of March 5th.

All dressed in her going home outfit and ready to be discharged!

Before we left the hospital, we asked the security guard to take our first family photo. In the same lobby where Taylor and I stood next to the beautiful Christmas tree with Clara on the day she was discharged from her own NICU stay, the Henshall family proudly smiled and showed off their new addition to the outside world for the very first time.

Unfortunately, I’m not a mother who gets to leave the hospital with her babies in tow. Instead, I must patiently wait for them to make platelets or perfect their breathing. Although I have never experienced what it’s like to have my baby stay in my hospital room, visit the “normal” newborn nursery or even be discharged from the hospital on the same day as me, my babies do get to come home. And no matter what the circumstances may be, the feelings of joy and excitement that occur when I finally get to load them into the car for their first ride home remind me that it doesn’t matter what path one takes to his/her final destination, just as long as s/he makes it there somehow…

We're leaving as a family!

One thought on “From NAIT to NICU – Part II

  1. Wow, Jen, I feel so out of the loop! First congratulations on girl #2. Two girls that close together is SO SO SO FUN!!! Second, I had no idea you’d been blogging again/still, so I look forward to reading as you share your family’s journey online.

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