“But first seek his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:33-34
I used to sleep with one eye open. We had a very long hard road when Lily was born and there was no end in sight. On her 5th day of life she was put on oxygen, we were told her lungs were underdeveloped even though she was full term. Immediately upon birth she had already been whisked off to the NICU and had been experiencing an extended stay in the hospital, with the newest development, her stay was extended. Sitting in the corner of that room holding her, there were alarms going off everywhere, a lot of the time. Sometimes it was her, sometimes it was other babies. They don’t call them alarms for no reason, when it is your child panic rises up within you. I felt as though my heart was going to jump out of my chest every time her alarm went off. All I could think was oh dear God, please tell me it isn’t something major.
Her oxygen saturation would drop out of no where and for no known reason. To tell you the truth, it didn’t even make sense that her lungs were underdeveloped either but we went along with the doctors as they seemed to know somewhat, what they were doing. Oh the alarms my friend… I’m holding my dear little one, trying to bond with her amidst all the noise and chaos and trying to allow my mommy instincts to kick in when; beep beep beep beep beep. Not a quiet beeping but a long terrifying one. It was awful.
Lily only spent 10 days in the NICU but she was set to go home on oxygen. I fought to get a pulse ox sent home with us, as they weren’t going to send one. We spent one night in the parent suite with her to do a test run. The nurses were just a short way down the hall from us. I laid in bed while she slept with one eye open. I was watching her oxygen saturation bobble between 98% and 87%, I knew her alarm would sound if she dropped to 85%. So here is where it began. I was waiting for her to dip that extra 2%. She had done it many times during waking hours, why not while asleep too? I was terrified to try and fall asleep and have that alarm wake me up. It was an awful sound. I couldn’t sleep. I didn’t know how to, it was as though I forgot. In a matter of a few days a little machine that was monitoring my daughter had slapped its terrifying handcuffs on me, I was subject to the machine now. In an effort to get some shut eye, when she woke for her next bottle and diaper, I zipped her into my favorite mommy hoodie, reclined in the rocking chair and closed my eyes. I slept for 15 minutes.
When we finally did take her home, the homecare medical team met us at our house and showed us how to use our new equipment. We had ample tanks of oxygen, plenty of canulas and plenty of line to stretch across the house. Oh yes and of course a pulse ox to alert us should her numbers take a dive. We were all set right? Ready for success! Wrong. I didn’t sleep. I couldn’t sleep. I watched those numbers for many nights, it became a game. Were they going to go up again or move down a percent? Finally I reached my cracking point, I broke emotionally from sleep deprivation. My husband and I made an agreement to take shifts. Oh my gosh, what a relief! He stayed up all night with her so I could sleep and I got up bright and early in the morning so he could go to bed. We finally figured out the sleep thing.
I had to start doing normal stuff again like leaving the house. Panic would set in. I wasn’t afraid to leave Lily with my husband, I was afraid to talk to people. I didn’t want to talk about what I had just been through. What else was I to talk about? If I saw anyone I knew, they would know I just had a baby and ask how the baby is doing. So there was that anxiety. The next one was far worse, going to stores. If I managed to not feel like I was going to vomit anymore and mustered up the courage the step over the threshold of the store, the first thing I was bombarded with was people noise and the beeping from the cash registers. Deep breaths as I moved through the aisles. I would hear a loud noise and jump, my heart rocketing up into my throat. I was so grieved that I was experiencing this, I beat myself up about it for quite sometime, having a pep talk like; hey, you are a healthy individual who is also very outgoing and social, what the heck is wrong with you!? I just couldn’t do it. My dear husband took over on grocery shopping for a while. I drew the line when I came home sobbing from the store one day. It wasn’t just PPD for me, it was all of the above. It was the death of the child we thought we were going to have. It was PTSD; it was anxiety, depression, grief, sleep deprivation… I could hardly eat!
I think I have painted you a clear enough picture, I hope. What did I do? I began to say no. I began to do it scared. I began to get back out there and try to socialize. I said no to the thoughts and feelings that accompanied all these diagnoses and reaffirmed who I am in Christ. One of my favorite scriptures that I clung to; “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7
I cannot take credit for the changes that were made within my mind. God did all the work but my part in it was handing it over to Him. I couldn’t do it. It was well above my ability to take good care of a sickly baby and take care of myself. I was so depressed and distraught, I didn’t cook for 6 months! If you know me, you know I spend a lot of time in the kitchen.
I reached a place in my journey where I realized how severely broken I was and I wanted change, I did not want to live like that anymore. I did not want to jump when I heard a loud sound. I did not want my heart to feel like it was going to beat right out of my chest. I needed to be calm first, for myself but also for Lily, children feed off of our energy. I didn’t want to be basket-case mom anymore. It was painful physically and I felt like it was killing me. So, I gave it to Papa and little by little He helped me through the alarms and the noise and talking to people again. He helped me get free.
Lily was cleared to get off oxygen at 6 months of age. I kept the pulse ox on her at night for a while just to be certain and eventually when i felt like it was time, placed it in the closet. That was a huge faith step for me. Little did we know we weren’t done with alarms. Lily has spent many nights in the hospital hooked up to all kinds of monitors. She came home on TPN (total IV nutrition) last summer before her g-j tube surgery. The pump on the TPN had an alarm. The pump for her gtube has an alarm. Now my husband and I have a phrase that we have shared with others on how we handle the alarms, we say— it’s not oxygen and we chuckle knowing we already tackled that one.
I know this is a long post but I also know someone needed to read this. I know there are folks out there suffering in the grips of PTSD; anxiety, medical trauma, social anxiety etc. There is a way out. I don’t know if you have a relationship with Papa God but He is an amazing Father that deeply cares about you and your mental health. He didn’t cause your trauma. I could have easily blamed Him for Lily’s condition, citing, that if He was such a loving God how could He ever allow something like this to happen to an innocent child? (or one of the many other atrocities in the world) I do know He didn’t cause it. We live in a broken world but as light bearers in this world we have the privilege and ability to bring light to dark circumstances. I have Christ within me and He is the light! He is the reason why I have any hope at all! Friend, I hope this blessed you. If you are struggling, please reach out to me or to someone else, there is help and His name is Jesus, I will happily tell you all about Him. God bless you all.