Wednesday, November 4, 2015

The Next Day // Day 1 of Charlotte's NICU Stay

This is the continuation of Charlotte's Birth Story and the start of her NICU stay.

Like I said earlier, we didn't know what to expect when we were driving to Sacred Heart to see Charlotte for the first time since she had been born. I don't even remember how we ended up finding where she was at, but somehow we did. There was a large waiting room outside the Level 3 NICU and the only people I remember being there were Ethan's parents. I'm sure there were more. Ethan's sisters, his parents, both sets of my Grandparents, and my parent's and siblings were all very supportive throughout the entire duration. Not to mention the friends who'd come up during the day to sit with us and then again at night. We had such an amazing support system throughout the entire stay. We are blessed with so much love.

To see Charlotte, we had to be buzzed in the secured doors to the hospital wing where she was staying. We had to scrub in at the large sinks and get a visitor's badge from the nurse's station. Her room was right across from the nurse's station. I found out later that that's where the most critical patient at the time goes. Right up front, so they can be monitored at all times. Of course, I was never fully aware of just how sick she was. I remember asking the doctor probably on Day 1 or 2 when we could consider her "stable." His response was that he didn't consider any baby stable until they're home with their parents. How naive I was to be asking that sort of question. I really don't blame myself though. No one ever told us the extent of her injuries. Not that they wouldn't have told us, but it was easier for us to just know that she was "very sick and in critical care." We didn't find out exactly what happened to her until she was discharged from the hospital and I spent an hour googling the names of all her conditions on her discharge papers.

Seeing her for the first time was hard. I could look at her, but I couldn't touch her. I knew she was mine, but there was no real connection. I'd never had that bonding time with her. She was mine and I knew that and I loved her, but there was an absentness to it. It's hard to explain without sounding terrible. I didn't know what she felt like on the outside. I didn't know what it felt like to hold her. What she smelled like. Or even what her skin felt like. I had the urge to scoop her up, snuggle her close, but I couldn't. She had so many tubes and wires coming out of her. The sound of machines running and beeping was scary. I wish I had taken a picture of her room on Day 1. The number of machines was insane. From two different breathing machines, to her EEG machine, to the feeding tube, to the internal monitor in her mouth, the machine that kept her body cooled, her catheter, and at least 3 medicine poles, it was all very overwhelming to look at and I know I'm missing machines to name.But by the end of her stay, I had the noises memorized. I knew what each beep meant and whether or not it was a bad thing for it to be sounding.

{First Family Photo}

Her nurse explained to us that her body had been cooled to protect her organs and most importantly her brain. She had suffered from hypoxic ischemic encephalopathy, or lack of oxygen to the brain. Her body was cooled to 92 degrees and it would stay that way for 72 hours and then a rewarming process would start. She wore special mittens and a wrap on her head. I'm not sure what purpose the mittens had, but I know the head wrap kept her EEG leads secure. We have both the mittens and the wrap in her memory box at home. Along with her tiny chest leads and her little arm pressure cuff. As her parents, we were allowed to touch her on her mitten. Not for long, but simple touches were allowed. The doctors were concerned with our body heat affecting her. 

 Since she was in critical care, only 2 people were allowed to be in her room at a time. I can't remember who all saw her that first day, but I do remember taking turns bringing visitors in. Each time having to scrub in and get passes. We left the hospital and went home at some point during the day. We needed rest. Although I don't remember if we got any. The beach was crowded that day and I remember laying in bed listening to the noise outside. It was July 26, a beautiful summer Sunday. People outside enjoying their weekend and didn't have a care in the world. I remember being jealous of them. I was hurting and they were having a good time. It wasn't fair. But this was the hand we were dealt. I had to suck it up and deal with it. At some point during the day we went back up to the hospital to see Charlotte again. The first two weeks of her life were spent like that for us. We'd get up in the morning, go to the hospital and stay till noon, go to Ethan's sister's house to rest, then head back up to the hospital till late at night. That was our schedule until Ethan went back to work.

I don't remember much more about Day 1, but I know there were tears. Lots of tears and lots of prayers. Not just from us. Everyone we were close to was upset by this news. It's not something you plan for. I remember taking turns being the "strong one" with Ethan. The one who wouldn't be crying at the moment, the one who'd hold the other and tell them it's going to be ok. She was going to be ok. That went on for awhile. The back and forth support we'd give each other. And just when we thought we'd be ok, one of us would break down and start crying. It was hard, I'm not going to lie. But thankfully that's how a marriage works. You're there for each other for better and for worse. Through sickness and in health. I don't think I would have made it without Ethan. He was my everything during this hard time. He stepped up majorly and became everything I needed him to be. He was strong when I was weak, he was the helping hand, the one who remembered what we needed, the one who'd ask the right questions, the one to tell me to eat and drink, the one who told me it was going to be ok, the one who'd hold me in the middle of the night when I'd wake up crying. I'm so thankful for my husband. I hate that we had to go through this, but I'm thankful we had each other for it.

 Day 1 finally came to an end and we thanked God for giving us one day with Charlotte. But we did pray for many, many more days with Charlotte. We were selfish with our prayers. Begging Him for what we wanted. I can't even remember if I ever asked Him for His will to be done. I just begged for His mercy and grace for her life. And promised that I'd give God all the glory, all the honor, and all the praise for healing her! Going home without her was hard and every time the phone rang while we were away from her it was terrifying. Phone calls were bad news. Thankfully we made it through the first night at home with no phone calls. Every morning we'd call to check on Charlotte before heading to the hospital. The nurses would update us on how her night went and it was enough information for us until we got there and were able to talk to the doctors during their morning rounds.

From my Instagram: 7-26-2015 ~ Happy birthday to the most beautiful little girl in the whole wide world. Mommy and Daddy love you so much, Charbaby! // Our Charlotte is still very sick and in very critical condition, but she's a fighter Today has been both  the best and worst day of my life. Your prayers are still very much needed as the next 2-4 days will be insanely important for her.

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  1. Oh Katie, my heart breaks reading this and I have chills. I can't imagine going through what you did and I'm so amazed by the strength and clear head (even after the fact) that you emanate writing this. I'm so thankful Charlotte overcame this HUGE hurdle at the beginning of her life. She is precious and a gift from God! Thank you so much for sharing, as hard as it might be. Give that girl lots of kisses, she is a blessing!!!

  2. This is so hard to red, what a tough experience for you. My niece was in the NICU when she was born in July and I admired the parents in there who had so much courage and hope! I am so glad you had a little fighter! :)

  3. I remember checking instagram constantly for updates on you and Ethan and Charlotte and praying that the three of you would get to go home as a family and one day soon move in to the new house all together. The strength you have already shown your beautiful little girl is amazing! I'm so happy and thankful for all of you that you were all such fighters and that now you can look back on what this struggle was and know the ending is a happy one.

  4. What a story! Did you get a longer maternity leave since she didn't come home right away?

  5. i love the raw honesty you shared here. it takes guts to be that honest and i love it. good for you. i remember checking instagram constantly and i'll say it again - you are a strong beautiful woman.

  6. Your post brings up so many feelings. I felt the same way. No connection with my baby who was now on the outside. I felt like a terrible mom and longed for the day she and I would have the connection I longed for. Our girls will always have their birthdays in common and their fighting hearts too! :)

  7. My goodness, you're a strong mama. I was so blessed to have a healthy and uneventful birth with my son, and I'm so glad to know that your sweet daughter is doing well. Beautiful, heartfelt and so real.