I drank a big cup of coffee and ate two donuts for two reasons this morning, one because they sounded yummy, the other because I am desperate to feel Fletcher move one more time. I haven’t felt him move since early Friday morning. I don’t feel him move often because he is so swollen and sick with fluid, but I can normally get a little something every day. When i haven’t felt him move in a while, sugar or caffeine often makes him kick or shift a little, even if its just a little, i know his heart is still beating and it puts me at ease. This morning I can’t seem to make him move.
I am 32 weeks pregnant exactly today. When Dustin and I first found out we were pregnant we were so shocked and probably in denial a little and then also excited because we want to have children and sometimes getting surprised like that is such a cool thing. Three days before our wedding, at 18 weeks we went in for an ultra sound to find out the gender of our first tiny child. The woman doing the ultra sound told us we were having a boy and we were just the happiest we thought we could be. The perinatal doctor came in soon after to have another look at the ultra sound, and as we were giddy and excited she informed us that our baby had a few abnormal masses on his right lung that were large and concerning. She suspected it was something called congenital cystic adenomatoid malformation, or CCAM. A condition in which one or more lobes of the fetal lungs develop into fluid-filled sacs called cysts. She seemed very concerned and very grave. We didn’t know what that was, what we could do or what it meant for our sweet baby. She wanted to see us once a week to monitor the cysts, we told her we were getting married on Saturday and leave for our honeymoon the following Wednesday and she tried to tell us to relax and enjoy it.
I keep thinking and wondering how life can be so amazing and yet so awful. A Facebook friend posted this the other day and it says what I feel.
“Life is amazing. And then it’s awful. And then it amazing again. And in between the amazing and the awful it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. Thats just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.” -LR Knost
We moved our care to OU and see a wonderful MFM who has taken wonderful care of us. There are so many people who have helped us on this journey. My former employer made sure we were connected with people who made us feel comfortable and cared for, and while they cant take away the problem, having people you trust care for you, makes a heck of a difference when you are going through an awful time. At about 22 weeks we found out that the pressure the cysts were putting on Fletchers heart, had caused fluid to form around his abdomen and skin, something they call hydrops. Hydrops are pretty bad, and signal that he is going into heart failure. So our doctor did a procedure to drain one of the cysts to see if that would take pressure off and improve the hydrops. The cyst just came back aggressively. Our next option was a procedure to put a shunt in one of the cyst to see if it would drain constantly in hope of making the hydrops go away. My placenta was in the way so for a few weeks we didn’t have anything we could try. The doctors give you a lot of options, and they tell you the risks of all of them. They are very honest about survival chances and the risks of each thing, for you and your baby. Dustin and I really appreciate the honesty even though its hard to hear. Eventually Fletcher was in a position that they thought they could do the procedure. Long story short, the shunt got placed and it functioned for about a week and his hydrops looked better and we had cautionary optimism for about a week. We went back a week later and the cysts were back and the skin edema had pushed the shunt into the cyst and we were back at square one.
Most days we try to pretend we are normal, going through a normal boring pregnancy. People at the grocery store ask when we are due, what we are having, names, etc. Its really nice sometimes to pretend with them. I have even been asked if im having twins, which may seem like an insult, but it was funny and I like having those normal funny pregnant things happen to me.
Last week the ultra sound showed the hydrops were significantly worse, his belly looks the size of mine filled with fluid. We saw him move though and swallow fluid and practice his breathing. We are preparing for the worst. When babies get this sick, a stillbirth is a very great possibility. They may take him at 34 weeks, but even then he is so so sick he may not make it through the delivery or time in the NICU. We want our son to make it. We want him to live.
I want to go through a long hard labor, I want to hear my son cry when he is born. I want to have a thousand sleepless nights and complain about being tired. I want to see Dustin get to be a dad and change diapers and sing lullabies. I want to buy clothes and pick things out and dream about the future of our kid. I want to have more hope than I do right now.
We live week to week. Each appointment and ultra sound is how we gage what to expect for the next week. We bought our first item for Fletcher on Friday, a tiny outfit to put him in after he is born. I have a bag packed to take to the hospital, it has pajamas and books to read to Fletcher when he is born, what ever the outcome.
The friends and family in our lives have been wonderful and comforting. The things that have been done for us, the love that has been poured out on us, it has been amazing during the awful. We have never felt so loved. Peoples generosity is always taking my breath away.
This is whats happening to us right now. This is our awful, amazing thing. We know everyone is going through their own awful amazing things, and I think if this has taught or reinforced anything about living and life, its that we are all here together going through awful and amazing and life is incredibly short and incredibly fleeting. We want to be more kind, more forgiving, more understanding and compassionate and we want to just love and enjoy the time we have.
Im not saying this is a blessing in disguise, because its not. It just sucks and its awful and I would never wish it upon anyone. But it does make you realize we all go through immense pain, and immense joy in our lives, and we should just be kind to one another and love wholly and genuinely.
We don’t know exactly what the next few weeks hold for us, but we know they hold some kind of intensity. Heres to hoping for the best.