"I just hope they're healthy"
We didn't find out the gender with either of our pregnancies. It didn't matter to me. I cared more about the human being that I was going to raise than what was between their legs. Gender was irrelevant. "But you are such a planner" people would say. Or my favorite, "I am too much of a planner, I could never do that." Steam would pour out of my ears like the old cartoon characters when they got mad. What could your baby's gender possibly have to do with planning? Newborns need three things, milk, mommy/daddy and diapers. That's fine if you are impatient or you want to paint your nursery blue, great. But don't insinuate that you are a master planner because you know if you child has an innie or an outtie. Rant over, well mostly.
My grandmother would always say "I don't care what you have, as long as it's healthy. I just pray that your baby is healthy." She said it to me so often that I would just nod and smile. I always thought that was just something people say.
We turned down the 11 week test during pregnancy. The one that gives you the initial risk potential of having a baby with Down Syndrome. Jeff and I discussed it, it didn't matter to us and it wouldn't change whether or not we move forward with the pregnancy. Then came the 20 week ultrasound, you know the one where they look at all the important internal organs and give you the thumbs up that everything is fine. We got that thumbs up. We had a perfectly healthy baby coming our way. No surprise there, we've done this before. Of course our baby was going to be another picture of perfection. We even had additional ultrasounds done because I had gestational diabetes, they told me once again how perfect my baby was.
Then he wasn't. Less than 24 hours after my perfect super-baby was born medication and intervention free, he wasn't healthy, he wasn't perfect. It must be a mistake, but it wasn't. It isn't. What happens when your baby isn't healthy? What then?
You put on your big girl pants and you deal with it.
Everyone keeps telling me how strong I am, how much the admire my strength. As if I had a choice.
I am a planner. I had planned on a perfectly normal, mundane and boring life. My 2.5 children, suburban, working mom life was just fine. I had planned on stressing about the sleepless nights, balancing my love between my children, complaining about my toddler having tantrums while trying to nurse a cluster-feeding newborn, wrestling with trying to find time to cook a homemade meal that free of pesticides, antibiotics and sugar. That was my plan. Not what color to paint my nursery and what type of clothing to fill my child's closet with. By no means was my plan to move to Rochester and wait for another child to offer my son the gift of life.
I am strong, but I have to be. I have three boys that require me to be. I have to be my infants voice, my toddlers teacher, my husband's wife. In this situation you have no choice but to be tough.
Everyday I am drowning in medical terms, pumps, questions, answers, trials and errors. Every morning I listen to doctors rounding and discussing my son's condition. Any time my phone rings I anxiously look to see if it's "THE CALL" we are waiting for, the call that will save his life. A phone call that will return me to the plan I had (with some modifications). That is now my plan. To wait. To hope.
I may be strong, but I am also weak. At times mad, depressed and jealous. Since all of this has happened I can't go on Facebook or talk to my "normal" friends with their "typical" babies. It physically pains me to read or hear people complaining that they are tired because their child didn't sleep through the night or announce their (presumably) healthy pregnancies. I die inside a little every time someone posts a picture breastfeeding or shares their baby's giggles. It's not them, it's me. I get that. I'm selfish and I feel robbed. I wanted all the new baby struggles and triumphs too. Someday I will be able to happily "like" those posts or commiserate with their trivial frustrations again, but not today.
Yesterday I went to my ICU mom's support group. I missed my friends. I missed hearing about their babies, their struggles and triumphs. They get me and I get them. We laugh together and we cry together. Those women are the only people who know what this feels like. Who know how exciting and terrifying the thought of extubating my son is or what it means to wean him off of hardcore narcotics. They can share in the anxiety of leaving your child's bedside, being fearful that if you do it may be the last time you see your baby alive. They are strong. They make me stronger.
I was away from my baby for the longest I have been in his short life. Jeff and I are splitting the week in Rochester so he is here Monday through Wednesday and then I come down Wednesday through Friday. On Friday night Jeff will bring Asher down and we will spend the weekend together before Asher and I drive back up to the cities on Sunday night and we start over. This is our plan for the foreseeable future. Yesterday when I got into town and saw my darling child the doctors immediately told me how great he was doing. He had been weaned off of some of his sedatives and they were preparing to remove his breathing tube the following day. Today was that day. Finn was finally extubated. He is so happy to have that obstruction removed. He can move more freely now and use his voice. I still haven't heard him cry but he is trying. Soon.
I am so impressed by Jeff lately. He is such an amazing father to these two boys. When I was scared to leave Finn, he reassured me. He stepped up more than ever to ensure that I was safe and comfortable but most importantly our son was being cared for appropriately. When Finn was being handled too roughly by a nurse Jeff was his voice and demanded a change. When I called with annoying questions about his care he answered them (mostly) appropriately. It's an awful experience and I wouldn't wish it on anyone, but it isn't going to go away and we are all doing a pretty decent job of handling it. He wrote a beautiful post expressing gratitude and love for the support we've received, both medical and non. What a wonderful husband, father, person.
We may not have a perfect and healthy baby but we do have our Finn. I may not get these months back but I will hopefully have a lifetime to make up for it with him. Our normal isn't a typical normal and I am trying to accept that. Every day I surrender a little bit more but it will never be okay.
Keep fighting Finn. You are still perfect to me.
May 11th, 2017