Mar. 27 - Mothers' Milk Bank

I was tempted not to write about this, but my sister convinced me to go ahead. Anyone whose stomach might turn at the words "mother's milk," "nursing," or "lactation" might want to skip reading this post. But, with my female audience in mind, here goes.

When I returned to work after my maternity leave with Jonathan, I'd make a trip to the Sieben's lactation room twice a day to ensure Jonathan had bottles for daycare. I always hated pumping. It was such an inconvenience, interrupting the work day and requiring me to haul my tubes, cones, valves and bottles around. And the tediousness of the constant cleaning. Ugh.

The lactation room itself was cold with bright, harsh lights and a teal, vinyl-covered recliner (which makes me sure the folks designing the rooms are a bunch of men, because the logistics of reclining while pumping just do not work out) next to a table that was far too small to fit both a clunky tan phone and one of the magazines from a nearby rack. It didn't help matters that you could hear every conversation held in the adjacent corridor, or that the room was in such high demand that, even though we scheduled our time on the sign-up sheet, inevitably there would be one or two attempts from some stranger to enter the room when the poor soul inside (often me) was feeling most exposed.

One day, someone left a copy of O Magazine in the room with a note inviting other mothers to read the article "One Woman's Mission to Save Babies," about a 37-year-old woman, Lynn Page, who gave birth to triplets at 23 weeks. Two of her babies died within 24 hours, but she pumped freezers full of breast milk as she waited for her surviving daughter, Reese, to be well enough to leave the hospital. Reese lived for six and a half months, and Lynn had only been able to hold her a couple dozen times. When I read how Reese had died in Lynn's arms, with Lynn's husband Chris by her side, I wondered what the chances were that she would die just then. Well, now I know. The medical staff can see when the end is coming, so they let parents hold their child one final time to say goodbye.

I sobbed over Lynn's story. I couldn't imagine having to suffer that kind of loss. (Nobody can. That's what Chris and I keep hearing now, too.) But unwilling to let all that precious milk go to waste, she contacted WakeMed Mothers' Milk Bank in North Carolina, an organization that processes donated milk to be given to other premature infants or patients with conditions for which breast milk has been found to be beneficial. Although WakeMed would arrange for shipment, Lynn and Chris felt compelled to deliver it themselves, as it felt like they were handing over their connection to Reese. After reading their story, my heart ached for Lynn and I felt all the more thankful for my healthy Jonathan at home.

Our first day in the PICU with Garrett, the nurses set me up with a pumping kit and showed me where the breastfeeding room was. I thought it was odd that this room was called a breastfeeding room, whereas every other room with a chair, sink and pump on the Mayo campus was apparently called a lactation room. If a mom was breastfeeding in the PICU, you'd think she'd do it in her baby's room. But anyway ...

The nurse who was showing me the room, and where to find the containers and labels, told me the pump was "the Cadillac of breast pumps." Apparently, your typical consumer pump does the job for expressing enough milk while you're at work, but the hospital-grade ones are more powerful to enable a mother to keep her supply steady when she can't actually nurse her baby for an extended period of time. She was right. My milk hadn't even come in yet when we arrived at the PICU, but the pump did just what it was supposed to do and by the time Garrett could nurse again, I wound up having too much and needing to pump for my own sake then.

But when I was first handed the packaged tubes and cones, I wasn't particularly looking forward to pumping, and I certainly didn't realize I'd be doing it for days and days. I remembered Lynn when I set myself up in the breastfeeding room and thought, "Thank goodness that's not my story. Thank God my Garrett is getting better. I'm pumping now to make sure I have milk when he's ready to eat again, but he's not going to need this. He'll be nursing, after all."

In contrast to the lactation room in Siebens, this one was like my personal oasis. It had soft, dimmed light and was noticeably warmer than the rest of the PICU floor. Instead of a recliner, it had a glider that let you rock to the whir-whir-whir of the pump. There were a number of times that room welcomed my tears as I agonized over whether Garrett would make it through his first procedure, or thought about the torture he endured in the ER. I didn't necessarily go there expecting to melt down, but when you're constantly around other people, I suppose it's only natural for your emotions to finally bubble up when you've found some privacy.

At other times, though, being able to lock out the equipment and beeping monitors of the PICU, settling into the glider and thinking about how well Garrett was doing, I actually found it to be quite relaxing. I nearly fell asleep on a few occasions. In fact, I'm fairly certain I did fall asleep once, as I woke up just in time to discover my two nine-ounce bottles were nearly overflowing.

In the beginning, the nurses stressed how important it would be to pump every two to three hours to keep my supply up while Garrett was intubated. More than one nurse made a point of asking, "When was the last time you pumped? The cardiologist should be in in 15 minutes. It'd be a good time to pump once he leaves. You really need to keep your supply up. You'd be amazed at how fast he'll go through the milk once he can take it."

At first I felt guilty for letting the time lapse to four or five hours, but I remembered how, when I was pumping for Jonathan, I could skip a session and still express nearly two-sessions worth at the next one, so I suspected my body would produce what it would produce, regardless of the frequency of my pumping intervals. And I was right. Sometimes I'd go six, seven, even eight hours without pumping, and still managed just fine. At this point, it wasn't a matter of not wanting to pump, but with juggling doctors, visitors, and Garrett's test, it was always a struggle to find time.

The nurses quite checking on how faithfully I was pumping when I had filled an entire shelf with 2.5-ounce containers in the PICU freezer. In fact, one nurse seemed particularly surprised when she was helping me pack up to move with Garrett to the general floor. She had brought a large plastic bag for the breast milk and asked which ones in the freezer were mine. I said all of them, but she still checked the name on each container before placing it in the bag.

About six containers in, she said, "Oh my goodness." Then another ten or so containers went by and she gave a more emphatic, "Oh my goodness!" and added, "You know, I think you'd be safe to pump and dump now if you wanted to." That made me wonder whether she had children, or if she nursed or ever had to pump herself. I wouldn't think someone who had to pump herself would consider dumping the milk out if there's a way to keep it for later use -- and Saint Marys has the system down for pumping and storing the milk. If I'm going to take the time to pump, there's no way I'm dumping that "liquid gold" out.

When we finally discharged from Saint Marys with instructions to give Garrett formula-fortified bottles, I was glad to have a significant stash established already. But he really didn't go through that much before he passed away, and I had nearly 200 ounces left over. That's a far cry from the 56 gallons Lynn Page pumped, but with so much effort feeling like ... not a waste exactly ... but feeling unfruitful, I wanted to donate the milk so that some baby somewhere might benefit.

When Garrett died, the nurses asked what they could do for us, if there was a funeral home they should call or if we wanted our pastor to come to the hospital. I wasn't sure what to do about that yet, but I asked them if they knew where I could donate the breast milk. I don't think any of them had heard of such a thing, but they did some research and found an organization, although whoever they spoke to said I'd have to be persistent when I called to get them to take it. That seemed odd. It shouldn't be work to give that kind of gift.

So I later searched online, and after reaching a couple dead ends, eventually got in contact with Indiana Mothers' Milk Bank. I filled out an initial questionnaire and was approved as a donor. After completing some additional forms and having blood drawn and sent to their lab, I received a pre-paid UPS box, however I needed to find some dry ice to keep the milk cold en route.

It took a lot longer than I expected to finally get everything in place to send the milk off, though. (But don't worry. Expressed milk can be stored for up to a year in a chest or upright freezer, so it wasn't in any danger of going bad just yet.) It was probably a couple weeks before I got in touch with Indiana Mother's Milk Bank, and then a week or so before the paperwork and instructions for the blood draw got to me. The first box they sent never arrived, so they had to send another one. And then it was at least two weeks before I finally tracked down dry ice at Mississippi Welder's. (Who would have guessed it'd be sold there?) Then I had to wait for a Monday morning when I could coordinate coming to Rochester, buying the dry ice and getting to UPS right when they opened at 8 a.m.so that there wouldn't be any delays in shipping.

So finally, finally, on Monday, March 15th, just over three months after Garrett passed away, I brought the box into UPS. The man behind the counter asked what it was. I'm sure that's just a standard question they're required to ask, but I felt a little awkward saying, "Um ... expressed milk?" He said, "Okay. That's all I needed to know." And that was that.

Mine wasn't the emotional endeavor Lynn's was. I didn't feel much of anything walking out of UPS, except slight embarrassment over having to tell some unsuspecting guy that he was holding a hefty box of my breast milk. Oh well.

So now Lynn's story is my story, too. I didn't want it to be. I didn't even consider it would be until Garrett's final moments. But, as they say, it is what it is. Hopefully some babies somewhere will be helped by it.

Mar. 16 - Jonathan

Jonathan woke up with a fever at 2:30 this morning. Thankfully it wasn't one of those Holy smoke, should we take him in? fevers, but to underscore how poorly he was feeling, he threw up all over himself, his blankets, his puppy, and me. In case I missed it, he told me, "Mommy, spill!" We were sitting on the rocking chair when it happened, though, and I guess it's easier to toss clothes and blankets in the wash than clean up suede and carpet. And considering the only thing in his stomach was the cup of water he had just chugged, it could have been worse.

It was an hour before he'd go back to bed, and then he was up every couple hours after that kind of complaining through the monitor. I checked on him once and pulled the covers he kicked off back around him. The next time he woke, he realized his puppy was missing and hollered, "Mom, puppy. Mommy, PUPPY!" The little brown pup was dry enough by then (having gone through the wash with everything else), so I gave it to him and he went right back to sleep. I was surprised he didn't need any more cuddles until he was up for the day around 9 a.m. He seems to be feeling a little better now, although he had an unusually screamy, whiny, red-faced meltdown when I changed his diaper before his nap.

Last Saturday we brought him to Christ Community Church in Rochester. That's where we would usually go before we moved out to the country. We've been having trouble making up our minds between First Lutheran in Lake City and Christ Community, but lately have felt kind of drawn back to CCC, even with the drive. Maybe part of it is expecting to see some familiar faces. We had gone the weekend before, and although I didn't expect Jonathan would want to be away from us, I asked him if he'd rather sit with Mom and Dad or play with the kids and toys. I tried to make it as clear as I could that playing with the kids would mean being without us, and he kept saying, "Kids! Toys!" and seemed very excited by the idea.

When we handed him off to the the lady coordinating the "lambs" room, though, a look of sheer horror swept across his face. I instinctively took a couple steps toward him, preparing to grab him back, but she assured me he'd be fine and whisked him off to the playroom. It was refreshing to be able to sit through a service and give it our undivided attention, but when we returned to pick up Jonathan, we learned that he had quite a hard time. Not hard enough to have his number flashed in the sanctuary to prompt one of us to go get him, but a tough time nonetheless.

So when we went last Saturday, I had to remind him again and again that he'd stay with us this time. "All done kids." He did fairly well and clapped along through the worship songs. When it was time to sit after greeting those around us, though, he thought that was the end, waved toward the front of the sanctuary and said, "Bye, church!" I half expected him to add, "See you later, alligator!" I told him we weren't leaving yet, and he behaved pretty well until about twenty minutes into the sermon. I tried to keep him busy with raisins (with a few chocolate-covered raisins mixed in), but then he kept saying, "Candy!" when he was ready for another one. Oh, good grief.

Chris ended up taking him out to the lobby, and once Chris thought he'd stay quiet, they came back. But as soon as Jonathan saw me, he pointed and exclaimed, "Mommy right there!" So I ended up keeping him company walking around the halls for the remainder of the service. Oh well. All in all, I'd say he did pretty well. We'll see how long he lasts next time.

Mar. 12 - Three Months Later - And here I thought I was mastering this grief thing

I usually take the bus to and from Rochester for work, but this week I've been driving in for an off-campus class every morning. Waiting for the shuttle to get me to my office afterwards can be painful (I'm not the most patient person), but I guess it beats walking for eight or more blocks when I'm not willing to pay for parking downtown.

At the Saint Marys stop today, I recognized a woman who boarded and sat across the aisle from me. It took a while to place who she was. Hmm ... someone from the PICU ... a neurologist, but not the main one ... I don't remember seeing her in the latter half of our stay ...

She looked like she was trying to figure out how she knew me, too. I asked for her name and gave her mine. She said she was Gloria and asked where she knew me from. I told her she had cared for my son, and even though I didn't mention his name, she remembered. Unfortunately, since she hadn't heard any more about his case after we left the PICU, she didn't know what had happened to Garrett and asked, "Oh! How's he doing?"

I thought I would handle it fine. I hadn't gotten all emotional weeks ago when I told a woman on the commuter bus (who I had seen plenty of times but hadn't really met before sitting next to her that day) that yes, I did leave to have a baby last fall, but he had some unexpected medical problems and died a month later. Maybe the delicate difference is that Margo didn't asked how the baby is, but rather referred to me leaving to have a baby. There wasn't an erroneous assumption that I had to correct. My news that he didn't make it was additional information, but it didn't carry the extra burden of obliterating the basis of a question.

But having gotten through that encounter fine, when Gloria asked, I thought I'd be just as composed. I paused as I thought about what to say, and finally explained, "Well, he had to go in for another procedure, and he didn't make it." By the time I hit "procedure," I thought I was in the clear. But with having to say "he didn't make it," I was undone. Bring on the water works. Ugh. I hate falling apart in public. And to make matters worse, we were sitting in the very front of the bus, and as soon as my face contorted into a wrinkled mess, more people started getting on. Bah!

It's funny, just yesterday I was thinking, Huh, today is March 11th. Garrett's been gone three months now. What a difference this is from the first few days we were dealing with the loss. That pain is still there, and I don't imagine it will ever go away -- but it's not so immediate. 

In the beginning, I'd wake up thinking about Garrett, and would instantly feel completely leveled emotionally and physically. Now I don't think about him first thing in the morning. And when I do think about him, being overcome with emotion doesn't seem to happen unless I go down some specific paths mentally.

So in that sense, it's like having an injury where "it hurts my leg when I do this." Well, then don't do that, silly. The hurt will always be there, but I don't need to experience it so deeply unless I'm open to it. Not that I ever try to get worked up, but I can try not to when I see it coming and stave it off. (For the most part, I let it come so I can process it and work through it -- but sometimes I catch myself starting to think about the ER when I'm trying to fall asleep, or choke up listening to a song when I'm in the car by myself and almost to my destination. I know those thoughts will keep me awake the better part of the night, or put me in an uncomfortable mindset while I'm getting groceries, so I shove them aside. I'll deal with them sometime -- just not right now.)

So here, three months later, it's nice to be able to keep the sting at arm's length when needed. At least that's what I thought yesterday. And then today I had to modify that expectation. I guess I can reign in my internal dialogue when it's headed someplace I don't want to go, but I suppose I won't have so much control when external factors come into play.

It still seems odd, though, that thinking to myself, "He's gone. He's been gone three months. He seemed so healthy, but he didn't make it," doesn't necessarily open the floodgates of despair. But when Gloria asked, and I had to tell her that he didn't make it ... I don't know. It's like saying it in that context, when it's new to somebody ... somebody who expected he'd be all right ... Having to make that correction just crushed me once again with the enormity of how wrong it is that he's gone.

Yes, he was doing so well. Yes, he should be with us now. Yes, he should still be doing well. But no. No, he needed another treatment. No, it didn't go well. No, there were complications. No, he didn't make it. No, no, no. NO!

Having to think through that again was like dealing with all the agony of the first week without him, but compressed into a few minutes. For her part, Gloria was very compassionate. I apologized for crying -- although I'm not sure if I was apologizing so much to her or to myself (stupid unruly emotions) -- and she reassured me that was normal. I regained my composure before we arrived downtown, but I was still shaking when I finally got back to my desk. Ugh again.

But why is that? Why would it be different than when I had to tell a few people on the Lake City bus? Is it because Gloria knew Garrett? In his short little life, she was one of the people who got to see him more than most of my own family, and she knew what he was dealing with medically. Is it because talking with her temporarily brought me back to a time when things could have been different? When things should have been different? Maybe that nanosecond of remembering hope, of subconsciously reliving hope, rendered the blow of "he didn't make it" all the more powerful.

Who knows. I guess grief is its own animal, and won't easily be tamed.

Mar. 9 - Jonathan

Jonathan is starting to refer to himself as "me" and "I" sometimes now, but other times he'll still say "you" or speak of himself in the third person with "he" or "Jonathan" (although he says it with more of a "tion" sound, like "imagination") or "you." For example, he'll say, "I running!" and "Give it to me." And when we bury him under his stuffed animals and ask, "Where's Jonathan?" he'll hop up, point at himself enthusiastically and declare, "Right there he is! I found me!"

Last weekend, when Chris and Jerry came back to our place after working on their folks' cabinets, Jonathan ran into the kitchen to greet them and exclaimed, "Daddy home! Jerry home!" Then he pointed to me, "Mommy home!" and himself, "Jonation home!" Then he went around giving everyone five, saying, "Daddy five! Jerry five! Mommy five!" and pointed to himself again and added, "You five," and clapped his own hand. What a character.