We Were There for Five Weeks

Each day in the NICU is a like riding a roller coaster. I'd arrive in the morning and ask for a report of how she'd done overnight. Sometimes, she'd have made some progress and after morning rounds, the doctor would order her oxygen reduced so she'd be breathing more on her own. Or, she would have kept her feeds down so they would try to increase the amount she was eating - 1 cc at a time (5 cc are in a teaspoon so it was slow going). Other days, we'd go backwards with an increase in oxygen or no change in feeds.

She was still on the ventilator and on a feeding tube at the end of week one.  She was able to maintain her body temperature, her heart had healed up, and they were slowly weaning her off of her pain meds. However, when they would get her too lucid, she would start ripping out her tubes.

On day 10, Allen and I were together. I walked in and heard a strange cry. The nurse looked over and said, "They just told me to take out the vent! You can hold your baby today!!" For ten days, we'd been cupping her, and reading to her from her bedside. We'd been sponge bathing her, and gingerly working around her breathing tube. She would try to cry, but she with the vent in, her mouth would open and close like a fish on dry land - without sound. I have to admit, it was a heart breaking sight. We didn't know what her little voice would sound like.

Her first audible cries.
My first time holding her - 10 days old.
 Lexi made very slow progress. They had no answers for us. At 35 weeks, no one knew why she was so sick. She often threw up her feeds - as many as 8 times a day - so every feed, essentially.

 Allen's mom flew in and stayed for 3 solid weeks. She ferried me to and from the hospital. She sat beside me while I held the baby. She'd hold Lexi and talk to her when I stepped out to pump or get lunch. Then, she'd drive me home, clean the house, and make us dinner.

Lexi and Gma
Allen would go to work and come to the hospital at the end of his day. Shift change occurred shortly after he would arrive, so he'd get about 1/2 an hour with Lexi. He would come home, and I'd give him the day's updates. Often, his frustration and sadness would erupt as doubt in our doctors. He had no place to vent his worries. As time wore on, it became clear that telling Allen all of the details wasn't helping him. It was hard on our marriage; we were grieving and coping differently - completely wrapped up in our own suffering.

Marti would come to the hospital after Allen would leave to take the "night shift". The nurses often allowed her to stay even though visiting hours were supposed to be on hold at that time. Marti would read to Lexi. Sometimes, she would talk to her. I'm sure they had conversations that I'll never know about; talks that will bind them for life.

We called this crib "baby jail".
 Our home teacher would come by the hospital on his way home from work. He commuted 2 hours each way, leaving at 4 a.m. and getting home after 7 at night. But, he took time away from his own family to visit her. He'd go with Allen (only certain people had access; if not, they had to be accompanied by people who did) and just listen to our story. Or, he'd offer to give her a blessing. His wife brought us food. Or just called and listened to me talk. They still hold a very special place in our hearts.

Our place in the "big kid" side of things.
About 3 weeks into our stay, the occupational therapist came to our bedside. She did some tests on Lexi to see how her development was coming along. The news was not good. She had some delays that were significant. The words "may not ever be normal" crossed her lips. I was devastated, but determined to do what I could to ensure she was wrong. Allen was pissed. He wanted to choke the therapist, and take Lexi home that day.

The middle of April, Aunt Laura and Uncle Brent flew out for a quick trip to meet Lexi and lend their support. Laura's sister and friend of mine, Christie, was driving through the area a week later, and even took the time to stop and visit Lexi in the hospital. 

At week 4, they let us do a trial run with Lexi. They gave us a room to stay in, and let us take all of her feeds for one night. At this point, her biggest challenge was eating. She hated eating. She was still on a feeding tube. She threw up almost all of her feeds. But, they wanted to let us take her. We wanted to take her. The safest thing was to try it out there at the hospital. We got set up and settled in for the night. I was stressed and scared. Allen was asleep. I was happy to wake up in the night and finally take care of her on my own. When they came in the morning to see how we'd done, the news was bad. Lexi had lost 13 oz. over night. Clearly, she wasn't ready to come off of the feeding tube. We sent her back to the NICU, heartbroken.

Week 5, my mom flew in to visit. We were in the big kid NICU. I was totally used to the environment. I knew no other way to have a baby. I was comfrotable with the routine, sounds, sterility of the place. Mom, however, wasn't. She quietly held Lexi while tears rolled down her cheeks.

Nana with Lexi.
 One afternoon, Mom and I left to run an errand. While we were out, Allen called us. He was at the hospital and they were releasing us. WHAT? They'd just took her off the feeding tube 24 hours ago. They'd said nothing that morning while were were there. We sped to the hospital; was this really true? It was. In a fog of excitement and disbelief, we packed up our things. We put her in the carseat and with very little to-do, we were on our way.

I slept the best when she slept on me. I didn't worry about her breathing. I didn't worry about  her crying. She never work early when we were this way. We slept sound and warm. We'd been apart for too long, in my mind, and I didn't care if we slept this way for months.
 The first night was complete chaos. We'd come home with an excel spreadsheet of medications. We were panicked that if she didn't take her feeds, we'd end up in the NICU again. Each feeding was accompanied by intense stress, conflict, and pressure. And, each feed she threw up. The entire feed. She projectile vomited, to be honest. But, somehow, she managed to thrive. She gained her 5 oz. minimum per week. We saw a gastroenterologist who got her on some meds. We changed formulas. But, she still barfed. And barfed. She barfed almost every meal for 18 months.

In the mean time, we went to the therapists to make sure she was developing properly. By 4 months old, she had surpassed her goals, and was actually doing things a 6 month old would do. Lexi walked at 9 months. She been giving a blessing after birth that promised her to have "all of her faculties". And she did.

We are stronger for having experienced the trial. I personally feel like I'm a much better mom because of our time in the NICU. I was "raised" by the nurses there. I learned to look for and see things many people aren't aware of because I was surrounded by good doctors, nurses, and therapists. Allen and I learned a lot about how each of us respond under duress. We saw our strengths and weaknesses magnified in those first years as parents. In all honesty, when we do talk about those weeks, we cry. We can't look over the pictures without some sniffles. Not because we feel sad for ourselves or that our experience was just so awful we can't bear even the thought of it, no it's not that, but that the love for a child is so strong that even 7 years removed from it all, the feelings come rushing to the surface like it was yesterday.

At nearly 7 years old, Lexi is a bright, loving, intelligent, compassionate, and very capable child. Sometimes, we talk to her about her story. We show her the pictures. She struggled for the first couple of years with the side effects of being born early, but has outgrown all of them. Thankfully, it was all temporary. We now have ourselves a very healthy little girl who will go on to do great things in this life.

Lexi - fall 2012

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What started as a way to communicate with far away friends and family has become a place for this horse trainer/HR manager turned stay at home mom of 3 girls to hold on to a bit of her own identity. It's my take on the ins and outs, the ups and downs, the thoughts and feelings, the mistakes and triumphs of this family as we bumble our way to eternity.