The World Outside

There's a whole world out there that Norah doesn't know about. She doesn't know about winter snowflakes or cool spring breezes. She hasn't been to the park, the beach, or even grandma's house. The hospital is her world. She plays with her oral syringes, ballard suction catheter, EKG leads, and hearing aids. A wagon ride restricted to within the unit is a big deal... And she hasn't even known that for months since the start of respiratory illness season. Even rhinovirus reminded us that something as minor as the common cold can be sort of scary.

We live in the hospital, and it shows. But someday we'll get to enjoy outdoor fun of all four seasons. It's difficult to stay positive sometimes. And even more trying is maintaining a superhuman level of patience.

Left: The 12 mL syringe is the perfect size for her little hand. She fought sleep so hard, but eventually gave in. When she snoozes, she covers her lips with her hand and makes the cutest sucking sound with the tip of her tongue. It's my absolute favorite.

Right: The ballard suction catheter is the perfect size for her perfect little mouth.

That balloon-looking thing on the left is called a lung... but her favorite toy these days is her stethoscope

She is so lovely in the dress that I knitted for her. These photos have nothing to do with this post, but I couldn't resist.

Sweet sweet Harper, looking longingly at the world outside of Norah's hospital room. This photo sums up how we've all been feeling these days. 

A Big Little Step

We, along with Norah's doctors, have have had multiple discussions about Norah's long-term plan. As I've probably mentioned before, Norah has another year (give or take) before she will be big enough to give the home ventilator a try. Her pulmonologist agrees that the thought of an 18-month(ish) Norah in the ICU is a sad thought indeed. All along, I've truly believed that she'll be weaned before she's big enough for the home vent.

Well, we took a big little step today. I spoke with this week's attending physician (who knows Norah well), and we decided she was ready for her first trial off of the ventilator today. We went into this with few to no expectations. We would see how she did, and put her back on the moment she seemed like she had enough. How long did she last? Three minutes. 


Perhaps we need a little perspective here. Aside from very brief disconnections from the ventilator (both intentional and accidental), Norah hasn't been off the ventilator since she was trach'd at six weeks old. She'll be nine months old on Friday. These three minutes were hard work for her. She cried, looked a little scared, and got sweaty (as she always does when she's upset). But the big story here is that her lungs continued to move air well, and she didn't desat (lose oxygenation in her body). Once we put her back on, she was still working hard to breathe, but recovered quickly and went back to playing and smiling (photo above) even before the care team left the room.

So what does this mean? Well, I can tell you what it doesn't mean. It doesn't mean she's coming home tomorrow. It doesn't mean that we suddenly have a concrete plan laid out for her. We'll continue to work on building her tolerance for her time off the vent. This will likely be a long process, and will be the foundation for determining our next steps. Her safety is our number one concern. We also need to make sure we dont work her too hard, depleting all those calories that she needs to grow.

We will continue to be easy on the expectations. As always, Norah will tell us what she needs. It isn't always loud and clear, but we're doing our best. I'm so proud of Norah. I've said it before, and I'll say it again: she is the sweetest, strongest, most amazing person I know.

Milk Maid

People have various opinions on breastfeeding. I believe that you can never assume to understand the situation and choices of others.

When Harper was born, we had a rocky start to breastfeeding. None of my friends nor my mother had breastfed, so I was in unfamiliar territory. My initial determination came from a want/need to save money. Why buy formula when I could make my own milk? Then I found that through nursing, my baby boy and I had a bond that I can't find the words to describe. When I returned to work, I immediately loathed pumping and the routine that went with it. Had I not quit to stay at home with him, I'm not sure how long I would have held out. We were fortunate that Harper completely self-weaned, which was an incredible experience.

While pregnant with Norah, I occasionally day dreamed about how great breastfeeding would be this time around. Armed with experience, I had a vision that the start of feeding the new baby would be a breeze. I pictured an immediate latch after delivery, and an immediate beautiful bond. That isn't what happened.

My blue little baby girl was whisked away to the NICU shortly after being born. She was connected to all sorts of things that helped keep her alive. My postpartum nurse brought me a breast pump. I immediately thought "Uggh... anything but that." Having had pumping supply issues with Harper, I was concerned that I wouldn't be able to make enough milk for her. I was so very wrong. My milk came in quickly. There was so much in the nursery's freezer that they make Jeff come take some home. By the time we were discharged when Norah was two weeks old, I was pumping about 32 ounces a day. She barely needed something like 8 or 10. We had an overflowing little freezer full of milk that sure came in handy later.

What about breastfeeding? Norah was on low-flow oxygen at the time, and I worked with an incredible occupational therapist as well as lactation consultants who helped us try to breastfeed. We struggled, but I was determined. A lactation consultant said something like, "I don't say this often, but I have no doubt in my mind that Shauna is going to be able to breastfeed that baby." At 1-1/2 weeks old, an attending physician discovered that Norah had a cleft in her soft palate. It was physically impossible for her to get enough suction to latch. Her ENT said repair wouldn't be till around her first birthday. I cried for two days, mourning a sort of loss. Though I loathed pumping, I continued to do it.

Then came my gallbladder surgery when she was five weeks old. My supply tanked afterwards, so my midwife prescribed a galactagogue, domperidone, to increase my supply. It worked like magic for a good 5 months, then lost most of its effectiveness. I continued to take it, though it was $50 for a two-week supply. On Norah's 6-month birthday, I had the hospital change her feeds to a 1:1 ratio of breastmilk and formula. We made it to the recommended 6-months, but I was still bummed about the switch. A month or so later, I had them change it to a 1:2 ratio. My production continued to dwindle until a week ago, when I let let the dietician know that I wasn't going to be bringing in any more milk.

So I made it to 8 1/2 months, and Norah had enough milk to last another week afterwards. She had the last little bit of my breast milk yesterday. Even though I didn't get to breastfeed Norah, we found other ways to bond. We did some skin-to-skin, lots of cuddles, kisses, and giggles. She knows who her mommy is, and I'd like to think that I'm her favorite person in the world. The end of my lactating days is bittersweet. Though it feels great to no longer be a slave to the breast pump, I'm a bit sad that she won't benefit from my milk anymore. I feel a tad guilty that I perhaps could have held out longer, but everyone tells me not to feel bad. I made it much longer than most would have in my situation... but what can I say - I'm a bit of a chronic overachiever.

Ooey Gooey

We've been riding a roller coaster lately. Norah has had ups and downs with rhinovirus (common cold), and she has been having a hard time with it. We had a slumber party on Friday night, but it was more "party" and less "slumber". Well... that is only if you consider a party to be holding Norah, trying to help her sleep, and comfort her during coughing fits. I know, I know, I shouldn't complain about something as minor as a cold, but it really has taken a toll on her. She spent much of Friday night coughing and crying in my arms... Her soundless cry has to be the saddest cry ever. I only got 3 hours of sleep. My poor sweet girl.

The discomfort continued through Saturday, when her respiratory therapist thought it might be a good idea to do a trach change (they swap out the one in her for a clean one). Sure enough, there was a big ooey gooey mucus plug stuck in her trach. It had been interfering with her breathing/ventilating, and causing her to cough non-stop. Imagine having a big glob of something stuck in your airway. Not fun. Not comfortable.

The last time she had a crazy plug like that, it dislodged into her lungs and she went into cardiac arrest at South Davis. It was the single most frightening experience of my life, with Jeff's pulmonary embolism after his back surgery (5 years ago) being a very close second. She was gone for nine long minutes that continue to float around in the back of my mind. I can't tell you how grateful I am that we caught this plug before it did something super scary.

Since then, she's continued to have some ups and downs. She had a difficult day yesterday, but has perked up a bit today. She tries so hard to be cheerful and ignore the routine pokes and prods. She's such a tough cookie.

What are fail-safe ways to cheer up Norah? Playtime with Harper, cuddles with mommy or daddy, or watching the Winnie the Pooh movie.

She really wants to play and be cheerful, even when she feels crummy. This girl loves books.

Great Weekend

We had a great weekend that included a "stay-cation" date night getaway as well as some family time on Easter Sunday. It felt great to have some time together as a couple, as well as some time together as a family of four. We don't get to do that as often as we'd like. We sure are appreciative of all of you that help us with childcare, as well as those of you that throw in a little extra to make date night happen. I can't thank you enough. xoxoxo

In other news, I think Norah is finally getting over her virus (poor girl). She hasn't fully been herself for about a week. Here's to hoping we're turning a corner and will be better soon.

Playtime and cuddles with daddy before date night.

Harper showing his baby sister how to use her new "iPhone" that the Easter Bunny brought. She loves it! She also got her first dolly that giggles like a baby. It makes me a bit sad that she can't socialize with other babies while living in the hospital.

Stylin in her too-cute Easter dress.

Wigs for Kids

One of our favorite nurses, Liz, wanted to do something nice for me. She surprised me by contacting her hair stylist to cut my hair for free! The experience was amazing. I ended up with a 20+" donation to Wigs for Kids (the first photo is of the five braids that I donated), which beats my record last time of an 18" donation. I am loving my short hair so much that I am going to be sort of sad when it grows in for the next donation.

Sure, I could have sold it for a pretty penny. I don't think I need to explain how much we could have used the money. But having been on the receiving end of gracious donors, the purpose of my generosity is reaffirmed. I love knowing that a sweet little girl is going to have a glorious wig during a tough time in her life. Self esteem is priceless.

The left photo shows it straightened and styled on the day it was cut... don't expect to see that again any time soon.

Our Easter family photo. My new favorite!