Tales from the Mommy Trenches

So, this happened:

Therese Regina Bass was born on December 28th, 2016, at 8:35 in the morning, 37 weeks gestation, weighing in at 6 lbs 4 oz. Before she was born, we knew she had a pretty serious heart defect and were fairly certain she had Down syndrome. I took one look at her as they held her over the curtain and thought two things: 1) that she most certainly did have Down syndrome; and 2) that she was beautiful. Scott firmly maintains that she is our cutest newborn. If my other kids are reading this some day, I will state for the record that I think all my children are equally cute. But Reggie is pretty darn cute. 

We changed our minds about naming her Matilde because my grandmother gave me a very old relic of St. Thérèse of Lisieux. My grandmother’s uncle had traveled to France during her canonization and obtained it as a gift for my grandmother. I prayed her novena and kept her relic close and have felt her invaluable intercession during Regina’s very stressful pregnancy. So, Scott and I felt called to name her after St. Thérèse in gratitude for her intercession and in hopes that she will continue to intercede for our precious child. Lord knows she’ll need it these next few months. 

Regina was rushed off to the NICU after she was born for oxygen and monitoring. The cardiologist was there to perform an echocardiogram to confirm her AVSD diagnosis and check the condition of her heart. Apparently, they wheeled me into the NICU on my hospital bed to go see her. I do not remember this, but look! Photographic evidence!

Reggie has lots of tubes in her life. The one in her nose is oxygen and the one in her mouth is a feeding tube. They never really gave her a chance to feed, they just stuck that in immediately. I’m sure they had their reasons, but I was somewhat irritated about it. 

She only needed oxygen for a little while after birth and hasn’t needed it since. She has needed the feeding tube since then, as she takes little to nothing by mouth and she is often too tired to feed. Her suck isn’t very strong at all, and she cannot maintain a latch. 

Thus began the chapter of my life as a NICU mom. I’m going to be honest, it sucks. Scott and I spent the four days in our hospital room without a baby. Only a pumping machine to remind me that I had one somewhere. The nurse had to wheel me into the NICU and teach me how to scrub in. Then, I would enter the NICU world to visit my baby. That is probably the worst part about it: the fact that you are visiting your own baby and she is in the constant care of someone else. I had to call each time before I visited because they didn’t want me strolling in while an emergency was in progress with another baby (or my own baby). I couldn’t visit during their daily rounds (where the neonatologist and nurses get together to discuss each patient) in order to protect the patients’ private health information. And worst of all to me, I couldn’t nurse my brand new baby. I tried and tried, but she would either refuse to latch or would quit after a few sucks. Essentially, this was my nightmare scenario. She was in the NICU for an indeterminate period of time, and she could not breastfeed. And I had to go home without her.

Because of all the uncertainty about her health, I asked our parish priest to go ahead and baptize her in the NICU shortly after she was born. He graciously agreed, and came to hear my Confession and administer the Eucharist, and then followed Scott into the NICU to baptize Regina. 

Scott said it was a beautiful moment. I wish I could have witnessed it. God willing, we’ll have a celebration of her baptism with her godparents and family and friends later. 

Eventually, we were discharged from the hospital and I had to tearfully say goodbye to my baby. I knew she was in good hands, but that first night away from her was rough. Scott had to call the NICU to check on her for me to ameliorate my distress. 

She has since gone from the NICU to the intermediate nursery, which has been nice because she has her own room. Since then, my life has been going back and forth between home and the hospital, missing my baby and missing my other four babies. We’ve been tirelessly trying to get her to feed by mouth, while also battling dropping oxygen levels, weight loss, and respiratory issues related to her heart defects.

 

But it is hard for me to despair and become embittered when there has been such an outpouring of love and support for us. I am a stickler for always writing thank you notes, but I am so hopelessly behind at this point, I can never catch up. So, I hope you all will forgive me and consider this your (wholly inadequate) thank you note. Thank you from the bottom of our hearts for all of your generous donations, gift cards, delicious meals, gifts for Reggie and the girls, kind notes, and care packages. Thank you for all of the prayers, advice, and encouragement. Thank you to our wonderful family for caring for my other four children so that I can be with Reggie. 

We have a long, hard road ahead of us. Reggie will be discharged with a feeding tube, and we are going to have to work hard with speech therapy (they do feeding issues too) and the GI doctor to wean her off of it. Her heart failure has already begun, and we’re going to have to manage it as best we can while trying to get her to grow and gain weight until the cardiologist deems her ready for open heart surgery. And then, of course, recovery from open heart surgery and all of the various therapies needed for children with Down syndrome. It makes my head spin just thinking about it. I am so disorganized and such a worrier, I keep thinking that God picked the wrong mom for poor Regina. But my sister says that God picks people to do His will and then qualifies them for the work they must do rather than choosing people who are already qualified. I’m just going to have to place my hope and trust in that. 

I want to suffer and bear all of this worthily, so if you have any intentions you want me to offer this up for, just let me know. 

And I’m going to do a post on my thoughts on her Down syndrome diagnosis and what that means for this blog going forward. I know you are on pins and needles, ha! Thank you for bearing with me for this ponderous post welcoming our precious Regina. She is a sweetie. We love her to pieces and will care for her as best we can. God has entrusted her to us, and we hope and pray to do His will.