The First 48

Hello, my wonderful friends and family! We are overwhelmed by the outpouring of love and support since Cooper's birth on Sunday night. Thank you thank you thank you! And thank you to our moms who have thus far served as the communication directors for our respective families. 😁  I thought I'd tell you the story here so it doesn't have to go through a game of telephone! I'll try to keep most of the gross medical details out of here. I'll try to be as brief as possible, but we all know that brevity is not my strongest asset!

So speaking of moms, let's go back to Friday night. My mom decided to fly in a few weeks early to help us get ready and to make sure she was here when he was born. Well, our Lil Bub must have sensed her presence and gotten over-excited, because early on Saturday afternoon, my water broke! I was 36 weeks and 4 days at that point, just at the very end of the premature range. We immediately knew something was amiss, though, because the amniotic fluid was pretty dirty instead of clear. We rushed to St. Mark's and I was immediately admitted to L&D and started on pitocin to get things happening.

I'll spare you the whole birth story, but on Sunday, 4/11/2021, at 7:01pm Mountain Time, Cooper Alan Willmott entered the world!

He weighed in at a whopping 5 lbs 0 oz, and measured 18.5 inches. It was clear to all 7,000 people in the room that he wasn't doing so hot, so the doctor quickly asked Mat to cut the cord and they whisked Coop over to the little resuscitation table. After slapping him around, suctioning him and giving him a quick hit on the CPAP, he perked up a little. The doctors let me cuddle him for 30 seconds or so and then snatched him away to give him a thorough evaluation. Things were starting to look like they might be all right until they found blood in his diaper. This is never normal in a newborn, and they quickly decided that he needed to be immediately life-flighted to Primary Children's Hospital in downtown Salt Lake City. They did let us hold him for about 30 seconds before they whisked him away to prepare him for his big adventure.

Before he left, they did an x-ray and gave us the news that something was wrong with his gut. They suspected it was duodenal atresia (a blockage in the intestines) and that he would probably need surgery within the next couple of days. We were shell-shocked, but what could we do? We had to let our little guy go. At my urging, Mat headed over to PCH to take care of Cooper.

My mom was able to stay with me which was absolutely clutch. I headed to my post-partum recovery room, which seemed impossibly empty without my baby. I was reassured knowing that his incredible dad was with him, and also I was incredibly tired. I tried my best to sleep and rest, and start pumping breast milk to save for Coop.

Thus began a diagnostic odyssey for our little nugget, worthy of a House episode! At PCH he had ALL THE TESTS, and the story changed from minute to minute. Mat's head was beyond spinning as he had to make potentially life or death decisions in the middle of the night for this precious little creature who was only a few hours old. By the wee hours of the morning, Cooper was determined to be stable enough that he didn't need immediate surgery, but critical enough that he was admitted to the NICU. 

Meanwhile, across town, they decided I was OK and they gave me an early release so I could join Mat in spending as much time as we can with Cooper while they figure things out and get him feeling better.

So, the million dollar question - what's wrong with him? The answer is a little complicated and cloudy, even as he heads into Day 3 of life. But I'll tell you what we know, or at least what we think we know. Things are somewhat in flux from day to day, so any of this is subject to change! Also, I know I have some friends who are doctors and nurses and prenatal GCs and probably know so much freakin more about this than I do, so I apologize for any inaccurate details...feel free to correct me.

#1 - Necrotizing enterocolitis (NEC) - This is a very serious bowel infection that can cause parts of the intestines to basically die. They immediately started him on heavy duty antibiotics and have been monitoring him with abdominal x-rays and ultrasounds several times a day. The worst part of this is that he cannot eat anything at all while he's being treated. He can't even swallow his own saliva or stomach acids, so they have an awful tube going down his mouth and sucking out everything in his stomach. He understandably hates this and has already pulled it out a couple of times, but the only way to heal is total "bowel rest". While he is healing, they are feeding him with TPN, or IV nutrition. It is specially formulated for him to have everything he needs, but it is still not substitute for actually eating. I am working diligently on banking a supply of breast milk for him whenever he is able to eat again, since everyone has told me that will be crucial for him. Both St. Mark's and PCH have been amazing in helping to facilitate that.

#2 - Probable meningitis/"clinical sepsis" - In doing an ultrasound, they found hyper-echoic spots in his brain, which they believe to be infection. They had been wanting to do a lumbar puncture but he was not stable enough until yesterday afternoon to do so. They tried to do an LP but the tap was "bloody", meaning the spinal fluid was contaminated with peripheral blood, so it was inconclusive whether he had white blood cells in the fluid. They are growing cultures from what they collected though, so should be able to see whether he has meningitis or some other bug that can help them better tailor antibiotic treatment. It sounds like they do not want to do another LP due to the risks, so we may or may not get a definitive answer on this one.

#3 - ABO incompatibility/anemia - I'm sure my prenatal GC friends know all about this, but I'd never actually heard of it until maybe a month ago when I started to get (I guess rightfully?) paranoid about it. This is not the Rh +/- incompatibility most people know about where you can get a shot to help prevent it. But when a mother has type O blood and the child has A or B, there is a chance that the mom's blood will get in and attack the A or B antibodies in baby's blood and start destroying red blood cells as foreign. I know this mismatch was inevitable because Mat is type AB (meaning baby could only be A or B), but I had hoped this wouldn't happen. Unfortunately, it did. The consequences of this are basically that Cooper's blood cells were being destroyed which was exacerbated by the bleeding in his gut, and his blood counts were critically low. He has had to have a few blood transfusions but his counts were stabilizing by Tuesday afternoon, which is awesome news!

#4 - Jaundice - This is a very common issue for babies where cellular junk (bilirubin) builds up in the bloodstream and they can turn yellow because their little livers can't handle processing and helping excrete the bilirubin properly.  Often, babies are placed in a weird blue tanning bed to help break down the bilirubin so it doesn't get too high and start destroying things. Cooper's bili levels are high but not critically so. He has a couple of things working against him in that the ABO incompatibility is creating more cellular junk than usual, and the best way that babies have to excrete bilirubin (by eating, digesting, and pooping) is currently not open for business. He is on the blue bed and blue lights and wearing his cool shades basically 24/7. He can only be off the lights for 20 or 30 minutes a day, which means that is unfortunately all the time we have to hold him and snuggle him in a day right now.

Whew, are you still with me? I know that is a lot of information, and there is still more, but those are the primary issues we're dealing with right now. It sounds like a lot, and it is. But the encouraging news is that things have improved a lot since Sunday night. He is still quite sick, but stable at the moment. His heart and lungs are strong and he is breathing room air with no need for oxygen support.

The NICU is a bizarre, amazing, terrible, incredible world and although this is a club I never really wanted to be a part of, I'm so glad they are here for our family and our son when we need them. The staff are so kind and thorough and helpful, I could go on and on about it, and I probably will at a later date. We are able to spend a considerable amount of time at his bedside, and it's amazing how the hours pass so quickly and it never feels like enough time. As I mentioned, due to the jaundice treatment we only have 20 minutes a day where we are allowed to hold and snuggle him. It's a complicated maneuver too, because he has approximately 8 million wires and tubes connected to his teeny body. He feels so small and fragile, and even the preemie size diapers are still a bit droopy on him. But it also feels indescribably incredible to get those precious moments to just feel him melt into me, touch his sweet skin, look at his beautiful face, and feel him breathing and wriggling and just being.

Don't let his size fool you, though. He is a feisty little bugger! He is constantly causing shenanigans. He pulls out his tubes, he practically rolls himself over when they put him in a position he doesn't like, he manages to inchworm his way out of the bili lights and wraps, and he peed directly in Mat's face when he was helping the nurse change a diaper. This kid is strong and spunky, even with all he's going through.

Unfortunately, due to COVID restrictions, after the 48 hour mark of admission, only one parent is allowed in at a time. Mat and I are now navigating how to divide up this time and it will be a strange balancing act. We are so much better as a unit rather than a tag team, but we'll just have to make do for the safety of the babies and staff.

OK, this is already way too long. Please forgive any inaccuracies, bad grammar, or general rambling. I hope this info and these pictures give a window into our world right now for our friends and family so you can be a part of this with us.

Please feel free to comment, ask questions, or reach out to us (text/email are preferable to calling right now). I know you'll understand, but please be forgiving if we are slow to respond, for obvious reasons. We again appreciate your love and support more than you know!