This is the story of our lives leading up to the birth of our Sweet Lila and her eight days with us. We also started a Caring Bridge website which we were updating while Lila was in the NICU. To read our posts about Jenny's pregnancy and Lila's eight days in more detail, Click here.
After trying to have a baby for 18 months we found out that we were expecting in June 2012. Dealing with infertility had been one of the hardest things we had experienced in our lives so far but we were overjoyed to experience this wonderful next step in preparing for Lila. The day we found out we were pregnant, all the struggles became a distant memory. Our focus in life immediately shifted from a life of disappointment to one of deep longing and anticipation.
Jenny is a type 1 diabetic and was labeled a high risk pregnancy. This meant that there were more doctor's visits and more ultrasounds throughout the pregnancy. The most difficult thing to control in a diabetic pregnancy are the blood glucose levels. They need to be within a specific range, as close to what a non-diabetics blood sugars would be, and the rushes of hormones played a tricky role in determining how much insulin to give and when. Jenny's control was better than most and for those that know what it means, her A1C levels were 5.1, 5.4 and 4.7 during the pregnancy. Looking back on it, the diabetes was the biggest concern of the whole pregnancy and it luckily never harmed Lila in anyway.
The rest of the pregnancy was pretty standard. Jenny gained a healthy 25 pounds and Lila passed every test she was given with flying colors. We had a fetal echocardiogram done when Lila was 22 weeks old and were told that she had one of the healthiest hearts they've seen in a diabetic pregnancy. She was stubborn at every ultrasound though and always put up a fight to be in the right position for the doctors. She also was a lazy little baby at times, and rarely moved the ten times an hour like the doctors had suggested. Instead she would move twenty times in a row every few hours. She liked to keep us guessing as to what she would do next and we loved being able to learn about her personality before she was even here.
Lila's due date was February 15th but Jenny went into labor in the morning of January 31st. So apparently Lila had no intention of being a February baby as we were sure she would be. The drive to the hospital in rush hour traffic was one of the most exciting and nervous car rides of our lives. We had such a sense of anticipation and wanted so badly to see what she looked like. When we arrived at the hospital we were surprised to learn that Lila had gone into the head down position. Two days earlier, at a doctor's appointment, she was still in a breech position (as she was the entire pregnancy) and so this had meant that we were going to need a c-section. Lila must have decided in those two days to flip and go head down so now a natural birth would be possible again.
Lila's Birth and Life
The labor was initially progressing fast and Jenny was getting through the contractions like a champ. The doctor's noticed that Lila's heart rate was not what they normally expect. It was higher than they usually see, but steady, somewhere in the 160's (beats per minute). A normal heart rate has a lot of peaks (accelerations) and valleys (decelerations) but Lila's remained steady. The doctor explained that there are three types of fetal heart traces during labor, the normal one with the peaks and valleys, a steady one like Lila's and a heart rate that starts to bottom out. This last one is a sign that the baby is not handling labor well. So Lila's was not normal but not the worst. Initially this was not a danger but just something the doctors were watching. As the day went on, the labor was progressing more slowly. When the water broke, the nurse noticed that Lila had meconium (baby's first bowel movement) in the womb which can be a sign of distress. Upon considering the meconium along with a type 1 diabetic pregnancy and Lila's heart rate, the doctor decided to do a C-section. It was actually okay with us at this point because we had already been planning on a c-section anyway and just wanted Lila here safely. (We go into greater detail about Lila's labor and birth on the caring bridge website.)
Jenny was wheeled down the hall to the operating room while Mike put on the full white surgical suit. Moments after Mike sat down next to Jenny in the operating room they started the C-section. Things were moving quickly and at one point the doctor said "30 seconds until the baby is here!" Those 30 seconds came and went with no baby crying, no one saying "it's a girl!" or any congratulations. There was verbal silence. The silence was lasting much longer than we were expecting and we knew something was not right. We could here a commotion on the other side of the sterile tent but nothing else. Mike kept asking if Lila was OK and the only thing that he eventually got from someone is that she has a pulse. After what seemed like an eternity, Lila was stabilized and intubated. She was taken down to the NICU and we got to see her in the incubator about 8 feet away for maybe a minute before she left the operating room.
Lila was born at 4:22 pm but we didn't see a NICU doctor until some time around 7 pm and even then it wasn't for another hour or so that Mike could go see her. The head NICU pediatrician explained to us what they think happened and what they are doing to try to help her. The pediatrician said that he's seen babies go through this cooling treatment (see Caring Bridge posts for more detail on cooling treatment) and go home as early as four days. Lila didn't move much in the cooling treatment and seemed to be shivering. After they took Lila off of the cooling treatment three days later, the NICU doctor said that if we prepare ourselves for Lila to be in the NICU for 1-2 weeks then we won't be disappointed. Two days after that, Lila had shown signs of more activity but the NICU doctor then said that if you prepare for Lila to stay here for another 3-6 weeks then we won't be disappointed. We were told that she could just be bad at Math but we were always preparing to bring Lila home with us. Mere hours after that, the neurologist tested how Lila's brain was interpreting sound. After these tests is when we were told that Lila had severe brain damage and that she would not be able to live without being intubated and would need a g-tube to feed. We were told that Lila could live for days maybe even weeks without being connected to anything. She lived only 6 hours without any tubes and monitors and our Sweet Lila died in our arms.
What Happened to Lila?
Lila had a specialized "metabolic" autopsy performed that had to be done within an hour after she died. Of course this meant that in order to help to figure out what happened to her, we would not have that much time with her after she passed away. This just added another layer of torture to our situation.
Throughout Lila's time in the hospital there had been two different theories on what could have happened to her. One of them being that she was "sick" the whole pregnancy, that something had been genetically wrong with her even though it never came up on any ultrasound or blood test. We knew that this was not the case, sometimes you just know, Lila looked too perfect. The other theory was that this was some sort of umbilical cord accident. It was difficult to figure out though because when Lila was born the cord was NOT wrapped around her neck. There was no knot, kink or blood clot in the cord. The doctors tested the oxygen levels in the cord and, again, everything was normal. The cord was in good shape, and everything seemed to physically as expected.
We met with the doctors a few weeks later. We were told that all of Lila's genetic tests came back normal. They said that Jenny's type one diabetes did not affect her at all. This was a "one in a million event." We were told that Lila suffered a hypoxic ischemic event that cut off some of her blood supply for "about 20 or 30 minutes." This was enough time to cause brain stem damage to the point that she could not survive. The doctors thought this "accident" occurred about one week before she was born. They said that Lila was strong and that she tried to fix it. That's why her blood oxygen levels and the cord blood oxygen levels were normal at birth.
Lila was a strong healthy baby. She was perfect. The hardest part to comprehend is that if Lila were born a week earlier, this event would not have happened and she would be here with us living the life that she deserved to live. Every day we are faced with this fact and it is impossible to comprehend how something like this could have happened.
Thank you for reading about Lila and her story.
Mike and Jenny Rupinsky