Calvin's Mic-Cap Crusade: Life in the NICU

Calvin spent the first 6 weeks of his life stuck on a hospital bed being poked and prodded and treated like a test dummy. His norm became the sound of alarms going off 24/7, babies crying, people rushing about and very little loving contact. The doctors and specialists ran a whole battery of tests on him to try and figure out what was going on with him; they did sodium channel testing, lumbar punctures to check the neurotransmitters in his spinal fluid, biopsies, multiple blood tests, ultrasounds, sonograms, x-rays, MRIs and EEGs, among other tests, all of which came back normal (except for the EEGs.) He became basically their little pet project. It seemed like everyone from all these different departments wanted to get their hands on him because they wanted to be the one to find out what was wrong with him and be able to claim it as their discovery. The neurologists struggled to control his seizures; they started and stopped several different anti-epileptic drugs (Keppra, Fosphenytoin and B6, in addition to the Phenobarbital and the Topamax he was already on.) He metabolized the medications so quickly that they have to keep his levels WAY above the "normal" rate for a baby his age just to keep the seizures somewhat under control. There were days when he had 20-30 seizures a day (which we thought was terrible at the time) and days that he had 60+. It seemed like every time they started to get the seizures under control, he would have a set back and we would have to start all over again. We went back to square one multiple times. It was so frustrating because the neurologists would start multiple drugs at the same time, so we never knew which drug was working and which wasn't so it was all trial and error in playing with his medications (which is still the case with him now.) He was hooked up to the EEG monitoring for a week or so at a time. After about a week or so, his scalp would start to irritate and/or deteriorate, so we had to take the leads and all the wraps off to give his head a break before we put it back on. Calvin was a difficult case because we never really knew exactly when he was having a seizure based on looking at him. Some of the movements he was making that we *thought* were seizures, turned out to be nothing (based on what the EEG showed) and things that we didn't consider seizures, indeed were. Sometimes the EEG showed that he was seizing sub-clinically (in his brain), but he was not moving or twitching or making any kinds of movements at all.

In the middle of November, the neurologists suggested a special formula, Ketocal, that has been proven to reduce or eliminate seizures in epileptic children and they thought it was worth a shot. We of course, agreed. So I was instructed to keep pumping for a few days and they would store it for him just in case the formula didn't work, but he was switched to this formula exclusively; no breast milk. The goal of this diet (The Ketogenic Diet) was to get him into a ketotic state, which basically means his body is basically tricked into starvation so it burns fat. The formula was a high fat, low carbohydrate (no sugars allowed) diet that was nutritionally incomplete. They struggled to get the sugar/dextrose out of the medications he was on, so after about a week, he was still not producing ketones (the goal was to have 50+), so they stopped the diet thinking it was not working. Unfortunately for me, my milk supply had dropped and I wasn't producing enough to keep up with him after they put him back on the breast milk. They had to supplement with formula, which made it worse, so I eventually had to quit breastfeeding/pumping altogether.

The time we spent in the NICU was admittedly a dark time for me. I felt like I turned into a different person than I had been previously. It was all I could do just to keep my head down and try and come out of there in one piece. I felt like all I wanted or was able to do was focus my energy on my sons and getting Calvin out of there. I was extra irritable, I didn't want to talk to anyone, answer any questions or have to explain what was going on with Calvin. I think I was still trying to wrap my head around what we were all going through, so it was hard for me to have to try and explain things to anyone else. Not to mention the fact that I was still physically healing from having just given birth and all the hormones that come along with that. I was a complete mess. I struggled with finding a balance between being there for Calvin yet still trying to be a good mom to Paul. I felt like what was happening with Calvin wasn't fair to Paul; he was just in limbo. He was thrown into this new environment, away from his home and his mom and dad and it was hard for him to adjust. Luckily he's a resilient little boy and adapted as best as he could. My heart broke a little more everyday when Paul would say "Mommy, go see Calvin today?" I hated that we had to GO see Calvin at the hospital; that's no environment for a not-yet 2 year old to be in for hours at a time. I wanted to spend as much time with Calvin as possible but I still had a responsibility to Paul, so we got into a routine of going over to the hospital in the morning and spending a few hours with Calvin then going back to the Ronald McDonald House and trying to find some sense of normalcy for Paul with a dinner/bedtime routine. I was torn between my devotion for my two children and was being pulled in so many different directions and I didn't know how to handle it. I had to be a mom to Paul, and an advocate for Calvin. I wanted and needed to be at the hospital as much as I could because there was so much that was going on medically with Calvin, I felt like I needed to be kept up to date and get as much information and details as I could. I had dozens of meetings with different doctors, nurses, specialists etc and some of the decisions I had to make for Calvin were significant. I wanted to do everything we could to help Calvin, but at the same time, I didn't want Calvin to be their guinea pig or their tool for learning- he was still my child. I cried more during these 6 weeks than I think I had in my entire life. I lost some of myself and I'll never be the same. This baby has changed me to the core, as all babies do.

The doctors got to a point where they were at a complete loss. They could not figure out what was going on with him; every test they did came back normal. They suggested he may have Microcephaly Capillary Malformation Syndrome (Mic-Cap.) The last resort was to have whole genome sequencing (where they look at every single gene he has to try and isolate any that are mutated or have additions or deletions to them.) They told us this was a VERY expensive test, but since he was in the NICU and it was basically medically necessary, that the hospital would pay for it. So, we agreed and they took a blood sample from Calvin, Ryan and me and sent it off to the lab in Seattle. They told us it would take about 4 or 5 months to hear back from that, and as of April 24th, 2013 we don't have results yet.

Long story short, after a while, we got Calvin to a point where they found the "sweet spot" with his medication and for the last week we were at the hospital, he was completely seizure FREE. He was having ZERO seizures. He was however, in a more zombie-like state- sleepy and just kind of out of it. We didn't really love that, but I was happier with him like that than with him seizing 60+ times a day, so we accepted it. They told us that eventually he would acclimate to the medication and be more awake and alert for longer periods of time.

The day we were being discharged, November 29, 2012, the nurse came over to me and said that the doctors were suggesting taking him down and getting an x-ray of his hips to confirm that they're not dislocated from being born breech. She said she didn't think he needed it because his hips seem fine and she never heard any clicking or grinding like one would normally hear when a hip is dislocated. I pushed to go ahead and have it checked because we were going to need to do it in a couple weeks anyway (as suggested by the pediatrician when he was born.) Sure enough, they came back and told me that his left hip is dislocated. They sent up the orthopedic specialist, who checked him out and just told us to make a follow up appointment at his office in a week or two and they would likely put him into a harness to try and push it back into place.

Calvin was in the NICU from October 21, 2012 until November 29, 2012 (just under 40 days). We stayed at the Ronald McDonald house through Calvin's first Halloween, through hurricane Sandy (and fared just fine) and his first Thanksgiving as well: just my mom, Ryan, Paul and I along with a few other people who were staying at the house from out of state.

The outpouring of love and support we received, emotionally, financially and physically from all over was overwhelming. Ryan and I are both very prideful so it was hard to accept help, even though we desperately needed it. We will never be able to adequately thank everyone for the support and love....it's just not possible. We are forever indebted to you all-- thank you for being there for my family in our time of need.