The Quilts of the Ronald McDonald House

A year ago right now I traveled to Rochester, Minnesota to live at the Ronald McDonald House while my baby boy was in the hospital. I took these pictures to show others just how amazing this place is. I focused mainly on the artwork and quilts, but there is so much more to say about such an amazing place. The artwork and quilts are only one small part of what RMH does to make people feel at home, even in the most difficult of circumstances.




I can't express what it means in difficult circumstances to have a place to call home.

12 Months

In about 3 weeks, my early bird, who weighed 1 pound 15 ounces at birth, will be 1 year old. I am working on the slideshow below to show how much he has changed; the 11 and 12 month photos have not been taken yet. I also want to create a "Year in Review" slideshow with more pictures. I have so many pictures of the neonatal intensive care unit, the special care nursery, the Ronald McDonald house, and coming home.

A year has passed and yet I feel like I am only starting to regain my energy. I don't mean physical energy, as in, I felt up to cleaning the house or exercising (although that has only recently improved as well). I mean vital energy, like the type of energy that drives you to pursue your passions or do something for yourself or even to be in tune to what is going on around you, so you can be an advocate for yourself or someone else.

I remember May 2011 like it was yesterday. I remember Memorial Day weekend, and I had just made the season's first batch of rhubarb jam. We had a particular vision of what the summer would be like...working in our garden, preparing our baby's nursery, attending the birthing classes.

But a few nights later, while sitting on a birthing ball in our first Labor & Delivery class, I felt a warm gush and....suddenly I was on a helicopter to a hospital with a neonatal intensive care unit. Everything gets a bit fragmented after that, but I hope to spend some time these next few weeks looking back at my journal and remembering the events surrounding the arrival of our little early bird.

Pumping, Pumping, Pumping

I have gotten a second job. It doesn’t pay well and requires lots of nights and weekends. In fact, it requires around the clock work.

Medela Symphony


“Whoosh, whoosh, whoosh.” I hear this sound even in my sleep. It’s the muffled, repetitive suctioning sound of the Medela Symphony, a state of the art hospital grade double electric breast pump. It’s a bright yellow thing, about three feet high, on wheels. Much better looking than the antiquated Medela Lactina I had to rent from Mayo for home use. The Lactina is a bright blue square thing with a yellow pumping widget inserted on the front that just looks like it shouldn’t be there, or like it’s cobbled together from spare parts.

The room is small and dark, complete with a dimmer switch for the lights, as well as a radio, rocking chair, sink and cleaning supplies. I now spend a lot of my time in rooms like these. Pumping rooms, we call them. Each pumping session takes about a half an hour per session, 10-12 pumping sessions every 24 hours. This amounts to pumping every 2-3 hours, except for one four hour stretch during the night so I can sleep a little. I calculate that this amounts to about 33 hours of work per week.

Why? Because my baby cannot nurse yet. Due to hormonal levels, you only have a two week window after birth to establish your milk supply, so you must begin pumping right away if your baby cannot nurse. Thereafter, you must pump to maintain your milk supply (it’s all supply and demand), pumping frequently much the way a newborn would nurse.

No wonder why I’m tired! Don’t get me wrong, I am not complaining, but rather marveling at this new, alternate universe I now live in. My concept of breast feeding was based on the experiences of friends and co-workers, all who had full-term babies. I saw that working moms generally pumped twice per day, once in the morning and once in the afternoon and I thought, I can do that. Plus it’s the best thing for the baby, and it’s free. Free? Now I have to admit, that dollar amount on formula doesn’t seem so expensive anymore compared to working another full time job!

I am attached to my breast pump. Pumping every 2-3 hours, this guideline is from start to finish, so by the time I’m done with one pumping session I only have 1.5 to 2.5 hours until the next session. It’s challenging to cram everything else into these small sockets of time, such as the two hour drive from the hospital to our home, kangaroo care with Wesley, dealing with the never ending amounts of paperwork and phone calls that need to be made, hosting visitors, etc….I barely do one thing and it’s already time to pump again.

I recently started working 1-2 days a week, to conserve some of my paid time off for when Wesley comes home. But with my pumping situation, working is quite the process! Before I went back to work, I asked one of the nurses in the neonatal ICU if I could use my Medela Pump In Style (the small, discreet kind of breast pump that comes in a black shoulder bag) while working.

“That pump is not for a mom with a baby in the hospital,” she replied sternly. “That pump is for a working mom who only has to pump twice a day.”

Medela Lactina



And so I cart a suitcase to work with me, complete with the Medela Lactina and a plethora of other equipment required.



I also calculate that for now, I am barely keeping up with Wesley’s needs. Right now, he eats 1 ounce every three hours, eight times per 24 hours, for a total of 8 ounces. I recently started tracking it and I was pumping about 12 ounces of milk per 24 hours. I gasped. All that work for 12 ounces! And will I even be able to keep up with him?



I flew into a frenzy, calling lactation consultants and researching ways to increase my milk production. I would be so disappointed if I lost my milk supply before he is even able to start nursing. After adding—yes, more pumping sessions—and making sure I’m hydrated and eating more, this week I am up to almost 16 ounces per 24 hours. Ideally, I should be at 19 or more ounces. I also produce more milk when I have direct contact with Wesley, such as after kangaroo care. (I also wonder if my lower milk production is partially due to the fact that I am separated from my baby.) Take fenugreek, the lactation consultant told me. This is an herb that is known to increase milk supply by increasing prolactin levels. This is my next step. She also encouraged me, saying that milk supply often increases on its own after the baby starts nursing. No electric pump can remove milk from the breast as efficiently as a baby can, isn’t that amazing?! Once again, it’s all supply and demand.



But regardless of the time required or the amount of milk you can produce, the benefits of breast milk in any amount are undeniable. Did you know that a woman’s body produces milk uniquely suited for the age of her baby? In other words, when Wesley was born at 28 weeks, I produced milk specifically formulated for a 28 week old baby, rather than for a full term baby. Isn’t that amazing? Pre-term milk is higher in calories, protein, and fats, as well as an enzyme that helps digest the fats. Pre-term babies have trouble digesting fats, particularly the fats found in formula.



Providing breast milk is the one thing I felt I could do for him. Even when he was in an isolette, and I couldn’t hold him without enlisting the help of at least two nurses, I could always produce his milk and know that I was doing something he really needed. In the beginning, he received only one milliliter of milk every three hours and now he is receiving 33 milliliters (about an ounce) of milk every three hours, still through a tube inserted in his nose and stomach. In six weeks, Wesley has grown from 1 pound 15.3 ounces to just under four pounds. He is making steady gains every day, in addition to now breathing independently and maintaining his body temperature, which means he is now in a bassinette and we can pick him up and hold him whenever we want. I love knowing that I played a role in helping him thrive.



But I am getting anxious. I really want to feed him. The pumping thing is getting old. It’s a machine. Right now the closest I have to feeling like I am feeding him is by holding him while he receives his 33 milliliter “bolus feed” via a pump attached to his feeding tube.

We have tried breastfeeding three times now. Still no luck. Recreational breast feeding, the nurses call it. One night the nurses were laughing hysterically because one of the new resident doctors wrote the order for recreational breast feeding as “the mother may recreate at her breast.” Anyhow, I guess “recreational breast feeding” means that we still haven’t gotten the hang of it. He’s still not quite ready…so far Wesley gets sleepy very quickly and not much happens. It’s more of a “getting to know you experience” the nurses say. We are told to practice “recreational breast feeding” once per day. Thus the pumping sessions continue, to maintain the milk supply until Wesley is ready to eat.

So for now, I keep pumping, pumping, pumping.

Everything I Know About Wesley

Wesley James really shocked us with his early appearance on June 3rd (his due date was August 26th). In the middle of our labor and delivery class at the hospital, I felt a warm gush and I hoped I had peed my pants. Not so much. It was a “premature rupture of the membranes” at 28 weeks and suddenly I had a helicopter ride, c-section, and a tiny baby in neonatal intensive care…so many things happened so fast and so unexpectedly, there is a large, blurry hole in my life between the day after Memorial Day and just recently. But that is another story…for now I want to give an update on little Wesley.

First Father's Day

Wesley is almost four weeks old and weighs 2 lbs 11.8 ounces (up from his birth weight of 1 lb 15.3 ounces). He is stable and just needs to grow, grow, grow. His main issues are feeding, weight, and breathing. When talking about going home, Wesley’s nurse Chelsea said it’s not so much the weight that holds you back, it’s the feeding and the breathing. He needs to progress in these areas before we could go home, which still seems to be a long way off. Doctors have told us to expect that he will go home around his due date, which was August 26th.

There are ups and downs. I learned to expect this when my mom was in the hospital six years ago. Still, it’s hard! Two weeks ago Wesley was up to 2 lbs 4.7 ounces and then he lost weight three days in a row so he was down to 2 lbs 3 ounces. It’s hard not to obsess about every ounce. The doctors had lab work done when he had lost weight for the third day in a row, and after waiting, waiting, waiting…everything came back normal. It’s hard to see him poked and prodded, and then wait for all the results, worrying. But by the end of the week he was back up to 2 lbs 4.3 ounces.

The same week in which Wesley was losing weight, he seemed unusually drowsy and was having more spells with his breathing (apnea, more about that shortly). Doctors determined that his hemoglobin was low and he needed a blood transfusion. They said the low hemoglobin was probably because of all the blood draws they had to do to check blood sugars and various other things. They draw Wesley’s blood and then he is so little he can’t keep up with making new red blood cells. Around the same time, they removed Wesley’s IV line (from his belly button/umbilical cord, through which they administered glucose, lipids, etc. until he was ready to receive breast milk). Sometimes these things just seem so invasive…when he is being poked and prodded I have to fight back the tears. I know that he is receiving the best possible care, but sometimes I wish I could just grab him out of his isolette and take him home.

As for feeding and weight gain, Wesley is up to 11 CCs (mLs)/hour of breast milk feeding (he has a tube in his mouth). He has 3 hours of feeding with one hour of rest and then this cycle repeats itself. After each cycle they check to make sure he has digested all the milk. They are adding some fortifiers to his milk to give it more calories...and it seems to be working. This week his average daily gain was 19 grams, up from 9 grams the week prior (they like to see an average gain of 20-30 grams/day). The nurses have told me that he will probably show signs that he is ready to breast feed around 34-35 weeks, which would be mid to late July.

Wesley’s breathing is stable—after he was born, he was intubated for only about 24 hours, then moved to another type of breathing assistance known as a CPAP for a few days, and now is on a high flow nasal cannula, which consists of two prongs in his nose that send a combination of room air and some oxygen when he needs it. He has periods of apnea, where he forgets to breathe, and periods of tachypnea, where he has labored breathing. The doctors say he will outgrow this as his lungs mature, but for now they have to monitor it closely. Wesley is receiving caffeine, which is a respiratory stimulant, to help with his apnea. The doctors are also now trying to wean him from the cannula, by slowly reducing the amount of air flow that the cannula provides.

Kangaroo care!

There have been days when the doctors tell me scary things. That Wesley needs to have head ultrasounds to check for brain bleeds and other scary sounding things like periventricular leukomalacia (a brain injury that preemies can have). I sit and wait for the results, worrying. Everything has come back normal, just some “immaturity of the brain,” which is consistent with his age.

But they also tell me he could have vision problems and he could have growth problems later on and may need to take growth hormone. Maybe, maybe not, they say. I agonized over this for a while and then I just decided to take it day by day. I cannot worry about things that could happen down the road. He will have eye exams beginning soon, which sound very invasive, involving instruments that hold the eyelid open. There are treatments they can offer to help his vision if they find something abnormal. Otherwise, they wouldn’t do the exams, they assure me.

The nurses are absolutely amazing and I am so thankful that they are amazing educators as well as caregivers! I had to tell them that I was registered for a “newborn basics” class but I missed it, due all of these unexpected events. I barely knew how to change a diaper, much less on a two pound baby with an IV coming out of his belly button and various cords attached to him! They have helped me learn so much already.

Necklace from my friend Shannon

I am feeling better every day. Mostly I am just tired. But I do not have much pain from the c-section anymore and I am off the pain medication. I am pumping breast milk every two hours around the clock and it is much more difficult than I imagined, mainly just due to exhaustion. (I am not complaining though, I am so happy that I am able to do this for him!) I am still staying at the Ronald McDonald House, which is an amazing place (more on this later). I am touched, comforted, and strengthened by the many cards, gifts, emails, visits, and prayers we continue to receive from family and friends.

Sometimes I feel like I have been teleported to an alternate universe. One moment, we were living our lives in our little house in our little town, preparing for our baby the way everyone does, and then the next moment, I live in a downtown apartment in a new city and I only see my husband on the weekends. I also mourn the abrupt ending of my pregnancy. I returned home recently and looked at all the maternity clothes hanging in the closet, which I never got to wear. The birth plan I never got to fill out. The sadness that I didn’t get to have a choice about the way everything happened. I realize these are all small things in the big picture and the most important thing is that we have Wesley and he is healthy, but I can’t help but feel a bit traumatized by the way everything happened.

New outfit from Marnie!

But everything else aside, we are just enjoying every moment with Wesley. Our first Father’s Day with him. His first bath. We’re sure we’ve seen a couple smiles. He looks different all the time. He is getting bigger! He is doing new things all the time. Recently, his fingers are finding his way into his mouth, and he tries to hold his pacifier, which is so huge compared to his tiny little hand. He has such big eyes that I swear are staring right through me.

I do kangaroo care with him every day and I believe he has come to expect it…it is our special time together. Doctors say that kangaroo care (holding him skin-to-skin) is the best thing we can do for him other than providing breast milk. During kangaroo care, he sleeps deeply and hearing my heart beat and feeling the warmth of my skin makes him feel like he is back in the womb.



Just after his first bath



The NICU is always busy, full of many babies and many families, and all the alarms from the monitors that track the heart rate, breathing, and oxygen saturation on all the babies, but we settle in during kangaroo care, mostly napping in our recliner. But sometimes I whisper things in his ear. Just yesterday I learned that Wesley will likely graduate out of his isolette and into a crib at the end of this week. I asked Wesley if he thought he could meet the 3 lb milestone this week as well. Then I told him he can have a puppy when he gets older, and I imagined him going fishing with his dad and his puppy. And I told him, we’ll be home soon…we have so many things we need to do.