“Your hardest times often lead to the greatest moments of your life. Keep going. Tough situations build strong people in the end.”
Roy T. Bennett
Thursday, October 12th:
We started the day with a level two ultrasound. This is an in depth ultrasound that takes roughly 1-1/2 hours. The sonographer measures all major bones as well as major organs (heart, kidneys...). The pitfall with an ultrasound is that they can only see so much; the right side of the baby was furthest away from the surface of my belly, making it really difficult to get a good shot of the abdomen. We met with a perinatologist afterwards and she explained that she wasn't able to see a diaphragmatic hernia, but she did see a mass that was roughly 3 cm x 4 cm adjacent to the heart. She wasn't able to tell us much more, but explained that the MRI would likely be able to give a better picture of what was happening in our baby's body.
We didn't really know how to internalize this information. Was this a good thing because she couldn't see a hernia or a very, very bad thing? When I hear about the discovery of a "mass", my mind immediately thinks of the big C and Brian's mind went to the same place. So, we just tucked that one in the back of our minds, hoping that we would learn more after the next test.
We then went from Prentice Women's Hospital over to Lurie Children's (the facilities are connected by a bridge) so I could have a fetal MRI. When I was changing from my street clothes into the fashionable hospital gown (Gucci Fall 2017 line), another patient, likely 4 or 5 years old, was being wheeled into a recovery space. This little person was intubated and looked so small on the massive gurney. I couldn't help but think of how scared and worried her parents must have been at that moment. My heart broke for them in a new way.
The MRI is the test when you lie down on a long bed and they slowly move you into a large tube. One major benefit of being at a children's hospital is that they give you the option of watching a movie during the test; I picked Hunger Games (duh). This crazy contraption makes the loudest, scariest noises and lasts about 45 minutes to an hour. When it's all said and done, it basically takes an insane number of pictures that are like slices of your body, allowing for a much clearer view of the baby's whole anatomy. After the test was over, we were able to leave for the day and we were both drained... but our minds were still racing with so many questions, especially with the introduction of this possible unidentified mass. Tomorrow was the big day.
Friday, October 13th:
Our day started back at Prentice Women's Hospital for a fetal echocardiogram. This is another kind of ultrasound that focuses specifically on the baby's heart. Because CDH is a congenital issue, there are often other congenital defects that can be present, namely in the heart. Once we registered, we were given a piece of paper that we were instructed to hand to the doctor when our name was called. During the level 2 ultrasound, the only diagnosis listed was CDH, however this paper listed hypoplastic heart syndrome. This was a bad thing to see. Ultimately, hypoplastic heart syndrome is a rare congenital defect that results in an underdeveloped heart, missing a chamber. The only options for survival (that we determined from a quick search) are very invasive surgeries and/or heart transplant. Our hearts sank. Is this also something we are about to face?
Our name was called and we met with an attending cardiologist who would be performing the test. Brian mentioned the hypoplastic heart syndrome to her and she confirmed that the CDH was the only diagnosis that she was aware of, but she would definitely be checking all chambers of the heart to verify growth. She was very vocal about what she was seeing as she performed the test. This was very comforting because basically everything she had to say was "normal" or "within expected range". Our baby has a healthy heart (YAY!) - this was the first piece of really good news we had received in the last week and a half.
After the echo concluded, we went back to Lurie Children's to the Office of Fetal Health to meet with a social worker prior to our meeting with the care team. This was actually a very therapeutic experience. The social worker expressed Northwestern's concern with not only our baby's health, but our health as well. We were able to discuss what brought us to the hospital, our mindsets, health histories and expectations. She gave us a little bit of insight into life in the NICU and challenges we could expect to face, but resources they would provide to help us navigate this difficult time as smoothly as possible. The social worker then left to check on how the team was getting along with reading all the test results... and then it was time to learn how all the pieces of the puzzle were fitting together.
Brian and I moved into a small conference room with the social worker to meet with a neonatologist (a pediatrician who specializes in the care of infants) and the pediatric surgeon. This specific surgeon was the person who we had read about when initially determining which facility to proceed with; his credentials were beyond impressive and it was very comforting to be in private audience with such a skilled professional who wanted to help us. The first thing the doctors did was thank us for coming to Lurie and entrusting them with the care of our child. This really blew me away - I had never had a medical professional thank me for seeking them out and it really set the tone for the meeting. I think Brian and I could tell that these people were on our side and they were going to do everything possible to set our child up for a normal, healthy life. We met with this team for roughly 45 minutes and an incredible amount of information and potential scenarios were discussed - it is all too much to describe and ultimately doesn't all matter because most of it will completely depend on how our baby responds during the early minutes, hours, days and weeks of his/her life. This is what we do know.
- Our baby does have a congenital diaphragmatic hernia on the right side.
- The liver and a small part of the intestines have infiltrated the chest cavity, impeding the right lung from developing fully.
- The left lung, while slightly smaller than normal, appears to be healthy and fully functional.
- The neonatal team will be present during my labor and delivery. As soon as the baby is born, the OB will cut the cord and hand the baby to neonatology.
- The baby will be intubated immediately.
- Depending on how well the baby is doing, we may have the opportunity to see the baby, but he/she will quickly move to the NICU.
- The baby will need surgery to move the liver back into the abdominal cavity and repair the hernia, but when this occurs will depend on the stability of the baby.
- We've been told to prepare for 3 months in the NICU - it could be less, but it could also be more.
- The baby will need to work with occupational therapy to learn milestones that other babies learn through day to day life - namely sucking and eating.
While this wasn't the news we were looking to hear, we were grateful to have information regarding the condition of our child as well as the plan for my delivery and for the baby. However, it also confirmed that as parents, we are going to miss out on so many incredible experiences that other parents likely take for granted - Brian won't be able to cut the cord, there will be no skin-to-skin contact, we won't be able to hold our child for an unknown amount of time, I'll need to pump and won't have the option to breastfeed for an unknown amount of time... it feels like all three of us have pulled the short straw. As we left the room, it all felt like a bad dream. Again, why was this happening to us? To our baby? I had done everything right - taken all the right vitamins and watched my diet - why??
We walked back to our car to have a much needed mental breakdown. No matter how state of the art the medicine or how skilled a team we have access to, we are still terrified. The final comments by our surgeon were that he is "cautiously optimistic" about our child's chances for a normal life, but the unknown is crippling.
As we drove home, we tried to talk about all of the positives and how lucky we feel to have each other. The team confirmed that babies who have a strong, unified parental presence thrive in the NICU. We vowed to do everything in our power to remain strong, supportive and unified. As soon as we got home, we felt like we needed to do something "normal", so we went out to dinner. At one point, we both found ourselves deep in thought, locked tear-filled eyes and just started to laugh; without words, we recognized that we weren't ready for anything normal because we were engrossed in the abnormal.
The next steps will be determined on Monday afternoon when we meet with our new perinatologist. At that point, we will discuss the plan for delivery (natural vs c-section), including a timeline for when the medical team thinks it is ideal for the baby to be born.
Again, we want to thank everyone for their love, support, prayers and caring words. You all truly give us strength as we take each day with a willing and open heart to accept that this is God's plan for us and our family.
"The thing about being brave is that it doesn't come with the absence of fear and hurt. Bravery is the ability to look fear and hurt in the face and say 'Move aside, you are in the way.'"
Melissa Tumino
