Saturday, August 4, 2012

{ Miss Peanut's Story, Part II }

When the alarm on my phone beeped on Thursday morning, telling me to get up now if I wanted to take a shower before going to the NICU for rounds at 8am, it seemed like I'd just fallen asleep. Considering that my last shower had been before we went to the hospital on Wednesday, another one was definitely needed. Everything that had happened since had been so intense, so physically and emotionally draining, I literally felt like I wasn't the same person. The jitters of Wednesday morning--membranes ruptured, no contractions, getting ready to go to the hospital--were literally a lifetime away from right now: tiny parent sleeping room, tiny baby daughter in the NICU, no idea what's going to happen in the next few hours.

Children's has this awesome setup where they have a few tiny rooms in the hospital for parents of NICU patients to sleep. Each one is just a double bed, a nightstand and lamp, and about a foot of space at the foot and on one side of the bed. Because Lainie was a congenital diaphragmatic hernia baby {typically very ill}, we got one of those rooms. There are also a couple of bathrooms with showers, a kitchen area, and laundry facilities. The space was undergoing renovations during our stay and half the sleeping rooms were unusable, so we were extremely fortunate to get one.

Down in the NICU, we found Lainie getting an echocardiogram, followed by an ultrasound of her diaphragma and a chest x-ray. We met her day nurse, Ramah, and went to rounds, where all the physicians were extremely positive about her health {and literally everyone remarked on what a cute baby she is}. I remember the attending neonatologist remarking that he wasn't sure if Elaina had had any poopy diapers yet, to which Ramah quickly replied, "Oh, she poops a lot!"


:: Daddy and Lainie ::

:: Mama and Lainie ::

At some point, we learned that the surgeon on call, the one who had paged us at 4am, wanted to take Lainie to surgery that morning.

Oh wow.

Not ready for that one. CDH {congenital diaphragmatic hernia} babies are usually taken to surgery when they are 2-7 days old; they do better when their bodies have time to adjust to life outside the womb before the trauma of surgery. But as the surgeon, Dr. M, explained to us, Lainie essentially wasn't "sick." Her hernia appeared to be so mild that it wasn't interfering with much of anything; she was breathing, pooping, etc. just fine. And there just happened to be one opening on the surgery schedule that day: 11am.

I was kind of freaked that her surgery was going to be today, but I don't think I had the emotional energy for any response except to just go with it. We talked it over with Dr. M, who is a very down-to-earth, friendly, high-energy guy in his 40's or 50's. He was confident that there was no reason to delay; Lainie was doing so well that they might as well hurry up and operate so she could begin recovering and go home sooner.

We spent the morning in Lainie's room, taking turns holding her. It was a two-patient room that she shared with a little fellow who kept having troubles breathing; there was a CD player with one CD on repeat It was a very soft, mellow, Enya-type album, but gee whiz, I was beginning to think it was groundhog day by the time we got out of there! I also became thoroughly acquainted with my new best friend, the breastpump. Because part of Lainie's GI tract might be going through the hernia, and because she'd have surgery in a couple hours, she couldn't take anything orally. {That's also why she had the suction tube in her stomach, vacuuming out stomach acid because her tummy was empty.} Depending on many factors, including how quickly she recovered from surgery, it could be a couple of weeks before she was able to take anything by mouth, so pumping became my new part-time job. In the meantime, she was getting IV nutrition.

The hours stretched by. Eleven o'clock came and went. Ramah called the OR. Her surgery has been delayed...not sure how much. Finally, with both of us famished and 2pm nearing {that's when the cafeteria closes for a couple hours}, Mike and I went to grab lunch, armed with cell phones and the pager that all NICU parents must have on them at all times. We had literally just gotten to the cafeteria...Mike was serving himself some onion rings...and I realized the pager bleeping, that oh-so-familiar sound from my working days, was coming from Mike's pocket. I don't remember if we called the phone number they'd paged us to, or if we just ran, but when we got to the NICU, the surgical team was waiting to take our baby. The nurse gave us the basics of what would happen. The anesthesiologist, a white-haired man with a British accent {Scottish? English?} explained the anesthesia. There was another guy, but I don't remember who he was. I was fighting tears, trying desperately not to cry, thinking a million things but mostly I'm not ready for my baby to go to surgery, I don't know how to say goodbye, I don't know what to say, what if this is goodbye?

Mike asked them if we could have a minute alone with her and everyone stepped out. We prayed for Lainie--or did just Mike pray? I don't remember--as I furiously wiped away tears. They told us we could follow them partway to the OR. So we did, as far as we could, and then they stopped and let us kiss her goodbye, and then they took her through double doors and we had to turn around and walk away.

I remember Mike asking if I wanted to get lunch from the cafeteria or go out somewhere, and being appalled at the thought of leaving the hospital during her operation. We ate in the cafeteria and then set up camp in one of the ICU waiting rooms. I called my parents, I think for the first time since talking to them soon after Lainie was born. The OR paged us once, to let us know that things were going fine. It seemed like not very long after that we were paged again, but this time it was because the operation was over and Dr. M wanted to talk to us. We met him in a little consult area. The surgery went great. He did it laparoscopically, through three small incisions on her side and back. The hole in her diaphragm was small, so he stitched it shut {rather than having to use a patch--yay!}. The probable reason the hernia had not been visible at her 19-week ultrasound--and that she could breathe just fine--was because she had a Morgagni hernia, which accounts for only 2% of all cases of CDH. Over 95% of diaphragmatic hernias are Bochdalek hernias, which involve the back part of the diaphragm, usually on the left side; they usually cause very severe medical problems. Morgagni hernias, however, involve the front and middle part of the diaphragm. Because they affect a different part of the diaphragm than Bochdalek hernias, often the only organ that goes through the hernia is the liver, rather than the intestines or stomach--so unlike the far more common Bochdalek hernias, Morgagnis often don't have symptoms. Many are not diagnosed until adulthood {and considering how perfectly Lainie functioned after birth, she may very well have fallen into that category if not for the ultrasound at 30 weeks}. In Lainie's case, the only organ that had gone through the hole was a 1.0 x 1.4 cm piece of liver. They put it back and Lainie was doing great! 

Around 5:30pm we were notified that Lainie was back in her room and we could see her. The British anesthesiologist was just leaving and explained that he had given her an epidural for post-surgical pain control. It's the only type of pain medication that did not have the possible side effect of depressing her breathing, so with an epidural she didn't need to keep the breathing tube they'd used during the operation.

She was completely out, a little puffier than I remembered, more IVs and some red marks on her cheek where the breathing tube had been taped down. Tiny rosy lips and eyelids so puffy we couldn't see her eyelashes at all. We couldn't see her incisions {they are toward the back of her side, if that  makes sense}; it was hard to believe her diaphragm had been repaired.

Our night nurse, Bessie, was awesome. She told us we were so lucky that Dr. M did Lainie's surgery! He was the first doctor to do laparoscopic {robotic} surgery on pediatric patients--he literally pioneered the equipment and techniques used in Lainie's operation. Bessie said he didn't operate very much any more, because he is so busy writing textbooks and traveling to teach other people how to do these surgeries. Mike and I just looked at each other, remembering Dr. M's parting words a few hours earlier: "I'm going on vacation tomorrow, so one of my colleagues will be following up with your daughter in the morning."

Lainie "just happened" to be born 16 days early. Dr. M "just happened" to be on call the night she came to Children's.There "just happened" to be one opening in the surgery schedule. She "just happened" to be well enough to go to surgery at 21 hours old. This "just happened" to be Dr. M's last day at work before leaving on vacation. So Lainie "just happened" to have her hernia repair performed by the world expert on laparoscopic chest surgery.

In other words, Jesus orchestrated all of this so that Lainie got the best possible care--better than we could ever have asked or imagined or planned! How can you plan something like this?! Here she was, barely a day old, hernia already repaired, resting comfortably, breathing easily, so well loved by her Heavenly Father.

Our pastor and his wife came to visit and brought us dinner that night. That was the first of many visits-and-dinners our church family gifted us. We chatted and laughed relief over Lainie's well-ness and smiled at her tininess, in disbelief over how quickly and how well everything had happened.

Little did we know, the miracles were far from over...

to be continued


  1. Wow, you mean there is more! I am pretty much beside myself with all that "just happened"... Oh how He loves us...

  2. Tears! And rejoicing with you!

  3. I love the way the Lord works out the "just happened"s. It's so neat to look back after you've walked through the valley and see where the Lord worked it all out. He's always one step ahead of us and that, my dear, is a good thing!