Friday, August 24, 2012

{ Miss Peanut's Story, Part IV }

After Lainie's stomach suction tube was removed and she began taking milk orally, our days settled into a three-hour rhythm focused on getting her to eat as much as possible at each feeding. It seems like such a little thing, but it was EVERYTHING at that point!

:: Sleeping Beauty ::

Fiona took out Elaina's epidural on Saturday evening, two days after it was put in. From then on, Lainie only needed Tylenol for pain control. The doctors had prescribed morphine for her as well, but she never needed it--in fact, after a couple of days, they switched the Tylenol from every four hours to every six. She was such a little trooper and never seemed to be in pain.

Getting the epidural out was a huge relief because it meant we could hold her without fear of jostling the catheter in her spine. It also meant that she didn't need continuous monitoring of her vital signs {heart rate and oxygen level}, so Fiona took off her EKG patches and the oxygen monitor. Suddenly our baby was hooked up to a lot less lines and monitors--holding her {especially when nursing} was no longer somewhat dangerous and full of tricky maneuvers! We slept so much better on Saturday night: there wasn't a monitor beeping continually in the background, and alarming each time Lainie stirred in her sleep.

:: Daddy giving Lainie a bottle ::

In the picture above, you can see a dressing over one of Lainie's three surgical incisions. Each incision was sealed with Dermabond, a topical skin adhesive. When the epidural was placed, a bit of the tape to hold it went over that incision, and when the epidural was removed, some of the Dermabond was pulled off. The dressing was just to protect the site, which took a little longer to heal than the other two incisions.

Our church family took such good care of us! They set up a meal schedule and people brought us dinner at the hospital. We absolutely love Seattle Children's Hospital and cannot speak highly enough of the employees and the institution, but their cafeteria is abysmal. I've eaten at quite a few hospital cafeterias, and this by far is the worst. Having company and a warm, delicious dinner each evening meant a lot to us.

:: Getting ready for her first sponge bath since birth, on July 4 {notice the infant socks on her hands to keep her from scratching herself...they were sooooo huge!}::

:: Admiring each other {this photo reminds me so much of her ultrasound profile!} ::

I think it was on Saturday afternoon that the decision was made to turn off Lainie's IV nutrition in hopes of getting her nice and hungry and encouraging her to eat more. They left the IV in her hand in case it was needed; it was a huge clunky thing, attached to a sort of brace to keep it stable, so it was like she had a cast from her elbow to her fingers. On July 2 {Monday}, her IV went bad, so they took it out and removed the brace. For the first time since she was born, we had a medical-device-free baby, unattached to any lines or monitors!

Around this time {Monday}, we learned that while 36 ml/feeding was the minimum goal for hydration, the minimum caloric goal--the smallest amount the surgeons thought she could consume to maintain her body weight--was 60 ml/feeding. Whoa! She was just barely eating 36 ml at most, but not all, feedings...and now we find out that they want her to eat almost double that?! We were incredibly discouraged by that news. Our nurses and the lactation consultants were also cautious about that number; they said that Lainie's stomach probably wasn't big enough to hold that much. I felt stuck: The surgeons were telling us that there were increased metabolic demands on Lainie's body, because she was recovering from surgery. She started out tiny and was losing weight, as all newborns do at first. Yet it was likely that her itty bitty stomach just wasn't big enough to eat that much milk all at once. Add to that the fact that she was a very sleepy newborn--probably sleepier than most because she was born more than two weeks early--and it seemed like we were headed for disaster. I could easily imagine us staying at the hospital for weeks trying to get Little Miss to eat 60 ml consistently at each feeding. Although they were dubious about the surgeons' goal for her feedings, our nurses and the lactation consultants constantly reassured us that this type of difficulty feeding is very normal for all newborns. Add to that that Lainie was recovering from major surgery, and she was doing fantastic! They kept telling us that, over and over. The discouragement must have been written all over my face each time I told her nurse how much she'd eaten and handed off a bottle of pumped breastmilk.

:: Lainie meets Julia, the other baby in our community group {11 weeks older than Lainie} ::

:: snuggling with Mama ::

:: hearing test on July 3 ::

:: bright eyes ::

:: still a bit of a conehead ::

Slowly, Lainie's feeding volumes c.r.e.p.t. closer to the 60 ml/feeding mark, but only close. Still, by the time Wednesday {July 4} rolled around, we--especially Mike--were confident that Lainie would be discharged. Much to our delight, the surgeon doing rounds that day was Dr. S, the surgeon who had spent so much time with us during our big day of ultrasounds and consultations in May. He remembered us and was very optimistic about Lainie's overall health, and sounded hopeful about discharging her that day. He said we would see how her next few meals went and make a decision about discharging after that.
I don't remember the exact numbers, but her next couple feeds were all under 60 ml. When the surgical resident came back late that afternoon, it was to tell us that the surgical team didn't think it was a good idea for Lainie to go home that day. They didn't want to discharge her, only to have her get worse {not eat enough and get sick/lose weight} and need to be re-admitted. We were bummed, and while Mike was pretty frustrated--he had been so sure we would go home that day--I was a little relieved. This whole feeding thing was something that only me and Lainie can do, and it made me uncomfortable to take her home when it was still such a struggle to get her to eat what they considered minimum requirements.
Our nurse that night was awesome. She said that she was "getting us out of here" and did Lainie's daily weight check with her dirty diaper on and after she had a full tummy.
I remember washing up the pumping equipment after Lainie's late evening feeding and crawling into bed next to Mike, looking out the window with him at the Seattle fireworks show. We were both disappointed not to be felt like we had lived in that hospital room f.o.r.e.v.e.r....
When the surgical team did rounds the next morning, the lead surgeon {a rather dour gentleman...I can say that now, right?} said that Lainie could go home! It was a good thing, too: Mike and I were literally wearing our last pieces of somewhat-clean clothing, because the family laundry room was being renovated and we were too lazy to go to a laundromat. Our nurses had the paperwork all ready to go, but we ended up waiting a couple more hours because Lainie needed one last blood draw. We packed up our stuff and Mike made multiple trips to the car. {The previous Sunday, our friends/neighbors Chris and Sarah had brought us dinner, and we'd asked them to swing by our house and bring the carseat and a couple newborn outfits. Since we'd been prepped for a hospital stay of at least 4-6 weeks, we hadn't brought any clothes for Lainie, let alone the carseat to get her home!}

:: Waiting for the last blood draw! ::
We dressed Little Miss for the first time...yes, she had lived in nothing but diapers and blankets for 8 days...she was literally swimming in that size newborn sleeper! Lainie went outside for the first time {her ambulance trip inside an incubator doesn't count!}, we wedged ourselves into the car amongst our bags of faintly stinky clothes and what probably amounted to 1.5 gallons of frozen breastmilk, and on July 5, just eight days after Elaina's birth, we took her home.

:: dressed! ::
Praise the Lord!


  1. You have been through so so much, but God is so so so FAITHFUL! You will never be sorry you took the time to write all this out. A miracle story for sure!
    Hugs, Momma!
    And kisses to Lainie!
    (And a pounder to Mike so he doesn't feel left out!) :)

  2. Amazed again at how quickly she was able to become medical-device free and come HOME! She is a little miracle xo