Where to Begin

As with most stories, the traditional place to begin is at the start. So, here goes.

A little over 15 months ago, my family and I joyfully imagined this healthy baby boy soon to join our tribe. Everyone anxiously awaited his expected arrival in early April. My baby didn’t wait until April; he couldn’t even wait until March. He was born on the 24th of February – exactly six weeks early. If only that were his only obstacle to overcome.

My contractions began as I prepared my other son, Tyler, for Kindergarten. Later, I will write the story of that portion of the morning and link it here. When I arrived at the hospital, I was confirmed to be in active labor. My confident and capable OBGYN, Dr. Dirk Carlson, discovered my little early bird was completely in the breach position and reasoned that our plan for a VBAC was out of the question. Looking back now, I see this as one of many miracles that occurred during a heartbreaking day.

Dr. Carlson performed a smooth Cesarean Section surgery to help us welcome my boy into the world within a few hours of my first waddles into the maternity ward. My husband was in the room with me. As were numerous doctors, specialists, and nurses. This, apparently, is standard procedure at a teaching hospital when a baby decides to be born so early. There were at least twenty people waiting around ready to do all in their power to protect my baby and me. I remember feeling anxious, but happy and content also. As Dr. Carlson pulled my boy into this world, he exclaimed that he was breathing well and showed my a wrinkled little boy over the blue curtain. The neonatologists checked his heart and lungs and said he was just fine. But he wasn’t.

Within minutes of hearing that his vital organs seemed to be doing their jobs, my OB told us, “his umbilical cord looks a bit different and we need to check it out.” I thought, “OK, that doesn’t sound too bad.” Then more disturbing news came our way. “He’s rather bruised,” the doctor said. Paul still vividly remembers seeing the bruises form as my OB was gently holding our baby. “Petechiae is visible on his skin, we need to take care of him right now,” they said. As I was patched up, we were accosted with more scary information. Our darling baby boy had something called omphalocele and he needed emergency surgery to address it. However, a blood test showed he had dangerously low platelet counts and could bleed out if they tried. He could bleed to death internally even if they did nothing.

For those of you who are not medical people, platelets are what the body uses to clot blood. They keep our cuts from bleeding continuously – they are vitally important. Crucial to survival. Infants are expected to have 150-500 thousand platelets per sample. my boy? He had four thousand. That’s basically none. Another miracle blessed my boy as soon as his low platelets were discovered – one of the neonatologists had an idea of what this might be and knew what to do. They gave my tiny baby 3 platelet transfusions within his first day of life and a few infusions of IVIG to help him keep the platelets he already had. It took the NICU team two days to get his counts up high enough to fix his omphalocele.

What is omphalocele? It’s an abdominal wall disorder that usually presents itself with a portion of the intestines not being where they should be. Some cases are disastrous because large portions of the intestines can die by being exposed in the amniotic sac. My baby’s intestines were not too bad. We add another miracle to the list because only a small portion of his small intestine was out of place. And, it was still contained inside his umbilical cord, thus protecting it from exposure and decay. He was born on Wednesday morning and the superb doctors fixed his tummy on Friday.

During the time between his birth and Friday, the hours and minutes were rough. To avoid jostling his intestines, we were told not to hold him. I couldn’t even feed him because they needed to keep his digestive system dormant until after the surgery. Then, more news and more questions came our way. Because of the low platelet counts, the doctors performed a head ultrasound. We were doing surprisingly well until then. This was all terrifying and heart-wrenching, but it was fixable. No lasting damage.

My already broken heart was crushed by the results of the ultrasound. This beautiful baby boy, MY baby, had significant damage to his brain. The bleeds rated a grade 3 on a 4 point scale. An MRI revealed two bleeds had destroyed two portions of his brain. How much of his brain? I don’t know (even today). I’m afraid of the answer so I refuse to ask the question. The pediatric neurologist gravely informed us that “he is unlikely to have no problems.” And that this damage could manifest as a small physical disability/limitation or as something much more life altering, or anything in between. How does a person process that?

Just a few days earlier, we’d been expecting a perfect little boy. Our biggest worries were that we hadn’t fixed up the nursery yet, and still had not decided on a name. Oh! How I wished those had stayed my main concerns.

Look forward to the next post: Where did the name Tug come from?