Updates and preemie progress

Since birth Merritt has had a decreasing number of "spells" (a heart arrhythmia called bradycardia, and blood oxygen desaturations) that are a consequence of persistent reflux and immature suck-swallow-breathe coordination. Almost all of his spells occur during feeding, the worst of which result in Merritt turning blue around the mouth, which I have learned to identify (it's pretty hard to miss) and intervene by interrupting feeding and ensuring him adequate recovery time. Merritt's spells continue to improve every day, which is a great sign, and over time we expect him to fully outgrow them.

Because of his spells, we took Merritt home from the hospital on a cardio-respiratory monitor.

The monitor does give us some peace of mind. We can take a quick a look at the interface and know that Merritt's heart is beating, and that he's breathing. The absence of alarms going off also serve to support the idea that Merritt is doing a-okay. On the other hand, the wires have proven to be a nuisance, and the travel pack that the wires attach to can be burdensome when trying to execute normal daily activities like carry the baby around the house, or take a walk around the block. The alarm is intense, like a home fire alarm, and has legitimately gone off only three times for a few brady episodes. It has also gone off a number of other times for things like migrating leads, and to signal a battery in need of recharge.

The machine doesn't monitor oxygen saturation, which is Merritt's downfall, and existing studies don't really support the efficacy of the home monitor for our purposes, but we've got it 24 hours a day for the next two weeks, and probably in some capacity for at least another four weeks after that.

Merritt had his first pediatrician appointment this morning. It was a family event, and was surprisingly stress-free (relative to my memories of first outings with Roscoe as a newborn).

Merritt has gained 5 ounces in the past 4 days, which is impressive--particularly since he's not being supplemented in any way--and he now weighs 5 pounds 2 ounces. Moving forward we would like to see him gain between 1 and 2 ounces every day--1 ounce for good growth and the rest to help him catch up. I was relieved to hear that the pediatricians are confident that Merritt will close the preemie gap by 6 months. For now, he's acting more or less like a full-term baby eating every 2.5 to 3 hours with brief periods of alertness, and sleeping most of the time.

Even though he's 4.5 weeks old, we probably won't be able to coax a smile from his little bird lips in the next week or so as could be expected based on his age--it will probably happen closer to 12 weeks. I do know that there's a little dimple hiding out on his left cheek, so stay tuned for that!

At the end of the day

For the first two weeks of Merritt's NICU stay, dinnertime remained the only constant for us. I made sure to be home for that hour in an attempt to preserve a sense of normalcy, and family togetherness.

What's for dinner was the last thing on my mind after those long, long days inside the hospital walls. Lucky for us, beginning soon after Merritt was born, meals began to arrive at our doorstep. Dinner. Menu decided, ingredients purchased, prepared, packed, and delivered.

We were spoiled every other day (for two full weeks!) by a meal made with love by our best friends and family. Truth be told, good food warms my heart any time, but there's nothing better than looking forward to sitting 'round a dining room table of familiar faces and savoring the minutes while devouring the fruits of someone else's labor. Especially in hard times.

My friend Emily used Food Tidings to organize our meal tree. The site greatly simplifies the task of bringing nutritious food to the belly of someone in need, and it makes the effort easily accessible to those who are interested in helping. Check it out!

We're Home

Merritt is one month old today (37 week gestation equivalent)! Roscoe will be 22 months old tomorrow. He's been so content examining all of Merritt's details. Here he's taking a close look at toes.

saying goodbye and giving thanks

For the past ten days I've been living with Merritt in the nicu. Our room is small, but it has a makeshift bed and sliding glass doors with privacy screens. Having a place to sleep when Merritt sleeps has saved me. We also have a lot more control over our environment; no more bright overhead lights, beeping monitors, or late night staff chatter.

My totes and duffels are piled high in the only available corner, muslin blankets, a boppy, onesies and tiny socks, and other new baby essentials are strewn about--in addition to my computer, agenda, snacks, and reading materials. It's weird, but just as the place was beginning to feel kinda like home I got word at rounds this morning that Merritt will be discharged tomorrow.

That's right. By mid morning tomorrow we will be set free.

After 26 days, the news doesn't feel quite as thrilling as I imagined it would. In fact, nostalgia for this experience has set in before I've even stepped foot away from it. This room, our nurses, these monitors, they're imprinted into the story of Merritt's early arrival--a series of events that have further shaped my identity as a mother. I've never had to fight so hard for the role.

The first month of our life together, me and Merritt, was more agonizing, tender, and emotionally complicated than I can put to words. Our family's shared investment to take care of each other in a crisis has made me overwhelmingly proud, and while I know that Roscoe wasn't left behind in the larger sense of the word, I hope that he will eventually understand that if the roles were reversed his Momma would feel the same fire to fight for him.

The hospital environment and nicu way of life, which at times made me feel powerless, eventually gave way to necessary partnerships. The impact that this experience has had on the four of us is tremendous, yet Merritt is just one of hundreds of babies admitted to this nicu every year. I imagine that for most of the nurses, caring for us during our stay was just part of the job (although many went above and beyond), but for us our stay in the nicu was our life. Now the thought of leaving this familiar place and these familiar people suddenly seems very strange and a little unsettling.

Will they know how much we've been changed, and how their dedication and investment in our success has really translated for me and Merritt? I will have to tell them.

I'm thinking a good old fashioned hand written note may be the way to go. And a sweet treat never hurts.

good times

On days when I feel terribly sick for home I watch the slideshows that Mel, our photographer, put together of the three of us over the course of Roscoe's first year.

If you've been following us for a while you might remember the photos from Roscoe's two week shoot.

I think Roscoe and Merritt share a lot of features. Merritt seems to have a different nose, and of course he's missing some baby fat.

Enjoy the photos here (and turn up the volume).

oh, but here's the cutie that I get to hang with

Mitch you.

While I've been away, Andy's been keeping me updated on Roscoe's adventures through iphone pictures and video.

See what I've been missin'? I especially adore the bottom left corner shot, where little harry potter stands.

3 weeks, a quick update

The big news from the NICU is that Merritt not only breastfed without additional supplementation for the past 72 hours, but he finally gained weight!!! It's a big deal, and I'm so relieved.

Yesterday he gained 10 grams, which triumphantly proved that Merritt and I are working well together and that my milk, alone, is enough to make him grow. It did fall 5 grams short of the 15 gram target that has been set but we're really more concerned with his growth trends not the daily tallies. Plus, a gain is a gain.

Then, tonight's weigh-in revealed a 45 gram gain. Ah-mazing!

Looks like we will be breaking out of here early next week. We've been told Wednesday, at the latest. And that's the date I'm going with. We'll be pleasantly surprised if we get to go home earlier.

Now I must find a way for our photographer--initially intended to capture Merritt's birth--to make room for us on her calendar to capture our homecoming.

I cannot wait to see Roscoe's reaction when he meets his brother for the first time.

Still Here

Hi all. We are well into our 19th day in the NICU. Can you believe it? I can't.

Merritt made significant progress last week. So much so that one morning his doctor explained that Merritt could go home if he could nipple all of his feeds for 48 hours. Andy was thrilled, and I was hesitantly optimistic.

Merritt's doctor should have said when he could nipple all of his feeds, not IF.

On Sunday, Merritt and I were moved to a more private space in the NICU, and we have been "rooming-in" for the past couple of days. We tested a 15-hour breastfeeding-on-demand experiment, which resulted in a 30 gram weight loss. I thought sleeping at the hospital would save me some energy and hopefully result in more rest, but at 6 in the morning after only 3 hours of sleep, the disappointment of our failure felt overwhelming. Tears flowed freely Monday morning.

Merritt was just not mature enough to consume adequate quantities of milk in order to maintain his body weight, much less grow. Coupled with increased fluctuations in his heart rate and blood oxygen saturation it was made clear that we would not be taking Merritt home anytime soon.

Understanding that no amount of practice, or cajoling, or effort on anyone's part can speed along his maturation process makes this both easier and harder to accept. Since we don't know when his skill set will kick in, I am tested by the uncertainty of the number of days we may still have left here. But it's less stressful too, because I'm saved from the burden to find a solution or to try harder to make our stay shorter.

The most difficult part of this experience has been the disruption to our family life. If we had been guaranteed a three week stay from the start, we might have established a different plan to meet everyone's needs. It's really hard to say. But we naively assumed that Merritt's stay would be short, and decided that we were best taking one day at a time. And, like they do, days have passed turning into weeks, and I'm terribly homesick.

Andy, Roscoe, Merritt and I, we're all missing each other in ways that are hard to explain.

As I type, Merritt nurses contently. A bath is up next. Back at home, Andy and Roscoe are making their way through the nightly bedtime routine and, soon after, Andy will join Met and I in our suite for some snuggling and catchup. I'll be staying the night at the nicu from here on out because little Merritt pulled out his feeding tube this morning and so we've been encouraged to give another go to breastfeeding on demand--I think his doc wants us out of here.

UPDATE: Since the tube was pulled his coordination has improved tremendously and his "spells" have decreased substantially. It could have been the tube, or it could be he difference of another 24 hours passing. Either way, he did an awesome job today, waking to feed, communicating his hunger, and latching and nursing well for substantial periods of time. Tomorrow is a new day and I bet it will be another good one.

Catching milestones

I'm so grateful for the opportunity to mother Merritt around the clock even though he was born early. I still got to be the lucky one, to be the first to see Merritt's brand new belly button.

Open Crib

Merritt has graduated from his incubator to an open crib! He's in the home stretch and we've been told that he'll be discharged once he demonstrates the ability to nipple (by bottle or breast) all of his feeds for 48 hours. The clock starts now!

Merritt with one of our favorite nurses

Update: He breastfed really well at his first feeding, but was too tired to nurse at his second feed and required to have all the milk through his feeding tube. Boo. Clock restarts. He just needs more time to learn to better coordinate sucking, swallowing, and breathing. Time will also tell how well he is able to regulate his body temperature outside of the isolette.

small steps, big gains

After a long and trying week, last Saturday night came at just right the time.

Andy and I had a "date night" at the NICU. One of our favorite nurses was on shift, and three big things happened: Merritt's parenteral nutrition was discontinued, his IV was taken out entirely, and his nasal cannula was removed.

Finally, we could really see our baby.

Andy and I gave Merritt his third bath and then we dressed him for the first time ever. If you're in the market for super sweet and oh so tiny preemie clothes you must check out Early Birds' organics or sunny days collections. I'm in love. Baby Gap also has a basics line for babies up to 7 pounds. We ordered a little wardrobe for M and they fit him surprisingly well, considering he's just over 4 pounds.

Since Saturday, progress has been slow but steady. His feeding schedule has changed from "continuous feeds" (milk fed through a feeding tube continuously 'round the clock), to "compressed feeds" (milk fed through a feeding tube over two hours, with a one hour break in between; and then the following day a feed over one hour with a two hour break in between), and yesterday he advanced to "bolus feeds" (1 oz. of milk fed all at once with approximately three hours between every feed). Merritt has responded well to every step.

Today he nippled all of his food, and didn't require any tube feeding. He also gained 10 grams, which is a good sign.

Hopefully, his doctors will be impressed in the morning, and we'll get to take the next step forward.

No definitive answer on when Merritt will get to come home, but I'm feeling confident that by no later than this time next week we'll be introducing Merritt to his big brother Roscoe.

Day 11

Such a sweet face to look forward to.

I can't get enough.