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.