Finding the words

I’ve been taking notes, wanting to return to poetry and I’m stuck in diagnosis and doctors notes and lists of possible problems. There’s words for it all though and I need to find them. Words for the NICU, the diagnosis and syndrome, the desperate sort of way she breathes even when sleeping. Her doctors say I’m doing so well. I think all you need to pass the mental health survey, given at every one of Kit’s appointments, is to not be willing to call it quits. I’d walk hot coals for this baby. Walk hot coals and eat them after! I’ll find the words soon I think, because I know there’s light here even if I can’t see where it’s coming from.


Bringing Kit Home

She made it.

At the anatomy ultrasound, the doctor told me to prepare to miscarry any day, that she would die (and if she didn’t, we might want to think about abortion). Her doctor called me a few weeks later to check in on me, and just hearing her voice set me off sobbing–I don’t think I can ever speak with that woman again. It was her job to tell me those things, but, still, it’s my baby.

With Kit’s full diagnosis, her cardiologists prepared us every step of the way for her not making it–if she came early, if my water broke, if, if, if. 

My labor and delivery was uneventful–the doctors were careful, aware of the complications–and nearly a normal labor/delivery except for the part at the end where there’s a dozen doctors in the room ready to whisk her away to save her life. I was told I wouldn’t even get to hold her before that happened, but I did. Then the room cleared and they took her away, Bryan following. It was so quiet and I threw up then fell asleep.

We couldn’t hold her for 36 hours. I walked between my room and hers, my ankles swollen up to unrecognizable sizes, and we navigated the permissions and passcodes necessary to see our daughter.

Luckily, she had her own room, tucked away in a corner. There were two tiny windows set back, near the ceiling, that I never found a way to lift the blinds til the last few days. When we could, we learned how to hold her without unplugging any cords. I never learned how to leave her, sleeping there alone / attended, monitored but not mothered.

The first week was the easiest–I was recovering and needed everywhere, children at home, the baby at the hospital, so it was all a blur. The second week though every day the doctors talked about sending her home but this and that came up–low calcium, reflux, little issues that aren’t little on a baby with a heart defect. By the fourth time they changed our discharge date, I was just about feral. The doctors gathered around me and asked me what I wanted (home) and told me why that couldn’t happen yet. I should have stood up–sitting down holding her in my lap while they all stood over me made me feel like a school child. The last two days and nights I spent at her bedside. Some nurses looked on me with pity (and let me cry on their shoulders. one bought me a latte after my second night there), and some with apprehension (“Kit’s mom is still here” “Kit’s mom is holding Kit again”).

I was prepared for her to have to be there a while but less prepared to have to ask permission to care for my daughter, to be told how to diaper her, feed her, hold her. The doctors are on our side, I know, but telling them I’m a poet did me no favors (might as well have said “your suspicions are confirmed: I know nothing.”). My research was useful–I was there every rounds, asking questions when I could keep my emotions in check. I’m sure they see a lot of tears, but if I want them to hear my logic and not my hormones, I have to hold them back a little better.

17 non-critical days in the NICU, with her doing so, so well, and still I couldn’t hold it together. I bathed her today, rubbing a washcloth of warm water and baby shampoo over her little belly, watching her color for hints of blue, and I know there’s not a way to prepare myself for the doctors having to, I can barely type it, cut her open, to fix her heart that I, a poet, can even tell is off-rhythm, to repair her so she can eat without breathing as hard as a marathon runner. I hold her close to my chest, and lay her head on my heart (I’ve read that babies breathing and heart-rate will sync to mom’s with skin to skin) and it can’t fix a thing with her anatomy but I hope she will soak it up and carry it with her, for the hard days gathering in the distance.

So we aren’t done with hospitals and this was the easy part. I’m just going to take in this little bit of quiet for now and build up my strength too.

you’re just jealous

At church there’s a beautiful baby girl always a row or two in front of us that sleeps and nurses and peeks around over her mom’s shoulder. Her perfect almond eyes and dark hair make me so happy and so sad. I’ve been but won’t be (this time) the tired mom fumbling with a nursing cover in service to feed the baby before she starts squalling. I’ve been but won’t be the mom pacing the back of the room to put her back to sleep, wrapping her up tight in a blanket against me.

Another heart mom asked online the other day, in our private group of heart moms, how to keep from feeling jealous of other moms with healthy babies and expecting healthy babies.

Sometimes I do feel jealous of problems like ear infections and broken arms and snotty noses vs problems like missing pieces of a heart, of a chromosome. I’m still mourning what I expected us to have–another girl, keeping up with the rest, not hospital stays and scars down the center of her chest. I’m not a first time mom–I know exactly what we are missing.

When I feel that gnawing sick feeling creeping into my heart, I let myself feel it for a little while, because it is Ok to feel things, the feeling is valid and true and normal. Then, with a lot of prayer and, when needed, repentance, I let it go.

God calls us to take every thought captive (2 Cor. 10:5)–otherwise the thoughts will take us captive, surely–so I take it captive and replace it with thankfulness. I have four beautiful healthy daughters, a husband who fears the Lord and loves me, a home, and so many other things. Baby Kit isn’t even born yet and I know that I have never been a more thankful, loving and tender mother to my little ones and wife to my husband than before her diagnosis.

I can’t help but sometimes hold one of the girls tight and hear her heart beating so strong and so healthy and thank God for it. I would have never wished for Kit to be born with a broken heart, and if I could change it now, then I would, but God never promised me five perfectly healthy children or an easy tear-free life. I’ve been studying the Psalms with a friend and one refrain it says over and over again–God’s love for us is a Steadfast Love and He is faithful. In four weeks, baby Kit will be born, and Bryan and I will go through the hardest time of our lives; I wish we didn’t have to, but at the same time I know that I need to trust God with my heart as much as I am trusting Him with Kit’s.

“The will of God is never exactly what you expect it to be. It may seem to be much worse, but in the end it’s going to be a lot better and a lot bigger.” -Elisabeth Elliot