Monday, March 10, 2014

// N I C U d i a r i e s: A M A N D A 'S S T O R Y //

Thank you so much Amanda, for offering your story as the first entry in the NICU diaries.  Your words are beautiful and so many things in your story remind me of our own stay in the NICU.  Especially how easy it is for mothers to neglect themselves because they are so concerned about their babies.  You are all troopers!

Most pregnant women spend a lot of time preparing for the birth of their baby. They read books. They attend childbirth classes. They practice breathing. They watch birthing videos. They envision healthy deliveries. They write birth plans. They decide whether they will medicate, or breastfeed, or circumcise. But that is the extent. Most women don’t plan for a NICU journey. How could they? It’s difficult to prepare for something you can’t imagine. And, unless you’ve been through it, you could never imagine…
Early pregnancy was good to me. I may have been uncomfortable and tired, but I was never sick and it really didn’t affect my lifestyle much at all. But at 37 weeks I developed mild pre-eclampsia and was placed on modified bedrest. I spent 2 weeks lying on my couch, watching movies, reading, worrying. My condition improved with rest so we were able to delay delivery to get me closer to 40 weeks. I desperately wanted to avoid a c-section, and my OB agreed that I should be able to try for a vaginal delivery. At 39 weeks I was admitted for induction.
There is much to my birth story, but I will try to keep this portion brief. After 8 hours of cervidil and 18 hours of labor I was told that my cervix, which had been 8 centimeters and fully effaced, was now only 6.5 centimeters and swelling shut. I was regressing, which I didn’t even know was possible. I was told that my body was starting to shut down and a c-section would be necessary. I was devastated. After all we had been through I would still be heading to the operating room. My c-section was not quick, nor was it easy. I was in terrible pain, despite the epidural, and felt that someone was sitting on my chest throughout the operation. (I would find out later that, in fact, a nurse was sitting on my chest and pushing down on my baby from above.) I was heavily medicated due to my level of discomfort, so while I remember everything I felt like I was in a haze. I remember finally feeling the pressure in my abdomen subside and then hearing that first, glorious cry. He was here. And he was MAD.

Our sweet baby boy arrived at 3:46 am. 10 pounds 3 ounces! 21 inches long. Perfect in every way. Except one. He wasn’t breathing well on his own. I was told that he would need to be taken to the NICU to be started on oxygen and antibiotics. I had been so averse to considering a c-section that my husband and I didn’t discuss it much prior to my delivery. But the one thing I made sure he knew with certainty was that under no circumstances was he to leave our baby’s side. So Jeremy followed baby to the NICU, and my c-section was completed and I was wheeled back to my room to recover. Jeremy finally called me from the NICU around 10am. (He had been told I would be sleeping; and I should have been, but was so anxious for news of my baby that I couldn’t rest.) He said that the nurses had started an IV and Brantley had received doses of two antibiotics and was on oxygen in an incubator. He said “He’s just been so calm through all of it. We’re just staring at each other.”
It was killing me that I hadn’t seen my sweet baby yet. My nurse was still too busy to take me to the NICU (the unit is locked, so I needed a staff member to be able to take me). I felt helpless. I hadn’t seen, let alone held or nursed my baby. I longed for him. I wanted to be able to breastfeed, and my nurse was very busy and completely overwhelmed by her workload, so I ended up calling the operator and having her connect me to the on-call lactation consultant, who came to my room and helped me get set up to start pumping right away. I got a few drops of colostrums the first time I pumped, and the LC assured me that that was a really good thing. I felt encouraged for the first time in days! I finally felt like I had a little control over something.
Around 3pm, my nurse came to check on me, and I insisted that she take me to see my baby! She helped me stand and walk a little. I was in terrible pain, and my legs still felt weak from the epidural and from being in bed for so long. But I knew that I needed to be able to walk if I wanted to see my son, so I pushed on. My nurse finally wheeled me to the NICU, and with her on one side and my husband on the other I made the long walk to Brantley’s room at the back of the department. I stood in the doorway of his room and just stared. Here he was. Finally. My sweet boy. Here in front of me. Already 12 hours old. And it was so very bittersweet. He looked so tiny in an incubator, hooked to monitors with an IV in his hand, oxygen tubing in his nose and a feeding tube in his mouth. I sat next to him and just stroked his back. He was so beautiful. And looked so little. And all I wanted was to hold him and cuddle him and love on him. And I couldn’t. His oxygen levels weren’t stable, so we weren’t able to move him from the incubator. I tried to put all of my love into those caresses. And I prayed that he knew how much I loved him, even if I couldn’t hold him close. And my heart broke a little bit, minute by minute, as I sat and stared at him.

At shift change the nurses encouraged me to go back to my room to get some rest, and when I came back around 9pm my nurse told me that Brantley’s oxygen levels were stable and I could finally hold my baby! I was so excited, but completely overwhelmed. I felt like this was the culmination of my pregnancy and delivery. So much excitement, and fear, and disappointment, and anticipation. I sat next to his bed and the nurse wrapped him up, monitors, tubing and all, and placed him in my arms. And tears streamed down my face. Incredible love overwhelmed me. And an innate desire to keep this precious little being from any pain or harm. And here he was with tubes and wires all over him, and there was nothing I could do to ease his pain. And for the first time in my life I truly glimpsed the sacrifice the Lord made in sending His Son to die for me. It was the most humbling moment of my life to date.

I sat and held my baby for hours, and we just stared at each other. I watched his oxygen levels creep higher and higher the longer I held him. The presence of his mommy was literally healing and strengthening him. The nurses finally ushered me back to my room so we could both get some rest.
The next morning I had to wait for my OB to come to see me before I could go back to the NICU. She gave me the go-ahead to be up and around, but cautioned me to be careful not to overdo it. I was so focused on my baby, though, that I couldn’t even think about myself. (This is one of the worst things, and the most common, a new mommy can do to herself. I am still recovering from aspects of my c-section because I didn’t take the time to take care of myself while we were in the hospital and after we arrived home.) I walked into the NICU and Brantley was OFF oxygen! We were so excited. The nurse said his oxygen levels were maintaining well enough that we could try to nurse. She called the lactation consultant, and with her help we were able to get him latched on right away. It was so encouraging to finally be able to nourish my baby. We nursed off and on, and I spent most of the day in his room. I went to my room to rest for a while in the afternoon, and when I came back to the NICU the nurse told me that Brantley had made so much progress that the neonatologist had given us permission to bring Brantley into my room as long as I was still in the hospital. So that evening we left the NICU, and took our baby with us. I was thrilled, but we realized quickly that things were not going to be easy for us.
Brantley needed doses of two different IV antibiotics three different times throughout the day, and they were having difficulty keeping IV access. There were multiple attempts at starting IVs, and multiple IVs lost. My poor baby had poke-holes in both hands, both arms, and both feet. We never had to resort to a scalp-line, but I was concerned we might. There is nothing worse than knowing that your baby will be experiencing pain and not being able to stop it. I knew it was for his good, but it still broke my heart every time they had to poke him.
Our first nursing sessions had given us a false sense of security regarding breastfeeding. But Brantley was not doing well. He would literally shake his head frantically, and make noises that sounded suspiciously like he was saying “Uh-uh, uh-uh”. I would have to hold him with one hand, and my breast with the other, and my husband would try to guide his head towards me. And he was so strong. It was a fight with EVERY nursing session. We would literally both be a sweaty mess by the time we were finished. Once we would finally get him latched on, he would suck for a few minutes and fall asleep. We would undress him, tickle him, jiggle him. But he was stubborn, and slept right through our attempts to keep him awake. I asked my nurse repeatedly for help, and she kept saying “It’ll be fine, he’s doing alright, he’ll catch on.” I knew deep down that something was wrong, but trusted that she was right and I was overreacting. The next day, though, things were not improving. By the afternoon he had gone nearly 8 hours without attempting or being persuaded to nurse. I asked that the lactation consultant come see us again, and under the guise of acting sweet, she was quite condescending. She and my new day nurse kept exchanging a look that said “New mommy here, overreacting”. But I knew in my “new mommy” heart that something was terribly wrong. Brantley was sleeping when she arrived, and she wanted to just let him sleep. I was adamant that she observe our nursing session, so we woke him and attempted to latch him on. Within minutes her condescending attitude disappeared and she realized that I was right, and something was not normal. She spent hours with us trying every trick she had up her sleeve, with very little improvement. By this time, seeing the frustration on her face, and knowing that my sweet boy had had very little intake in nearly 12 hours, I was devastated. Around this time my nurse came into my room, slightly frantic with arms full of formula bottles and told me that his bilirubin level was high and his weight had dropped 11% and we would need to supplement. At this point I could not control my emotions. I felt like a terrible mommy. Not only could I not feed my child, but he was losing weight rapidly and I hadn’t even noticed that he looked yellow! The lactation consultant could see my distress, and knew that my desire was still to breastfeed, so she spent more time teaching us how to supplement Brantley with formula at the breast. Nursing had officially become a 2-person endeavor. I would hold Brantley to my breast, and Jeremy would syringe feed him formula by the 0.1mL. That is LITERALLY one drop at a time.
Over the next several days our breastfeeding routine would be modified many times. Brantley continued to lose weight until he was at a 13% loss. Anything over 10% is concerning. By the end of his seven day stay in the hospital his feedings were scheduled for every 1.5 hours. My milk didn’t come in until day 5, so I was pumping after every feeding to help stimulate supply. He was still a slow, sleepy eater so it took him between 45 minutes and an hour to nurse at each session. I would pump for 30 minutes after he nursed. That gave me, typically, between 15-30 minutes to rest before we started over. And Jeremy was still syringe-feeding him at my breast. And due to his weight loss, they wanted him supplemented with 15 mLs, which is about 3 teaspoons, at each feeding. We were stuffing him so full of milk, and so constantly, that he was in a perpetual “milk drunk” state, which made him even more sleepy, which made it even more difficult to keep him awake long enough to nurse. He and I were both exhausted. When the nursing was not getting any easier, the neonatologist diagnosed Brantley with a “minor tongue tie”, which is when the tongue is tethered too tightly to the floor of the mouth. He clipped it with a sharp surgical scissors (more pain for my sweet boy), but we still didn’t see much improvement. He would later be diagnosed with a severe posterior tongue-tie, which was revised as an outpatient an additional two times, and I think he still has an undiagnosed upper lip tie. Nursing has never gotten much easier. And while we no longer supplement at the breast, Brantley is still supplemented with formula and I frequently have to take breaks from nursing to pump in order to allow my breasts time to heal.
On day 5 I was discharged from the hospital, and there were no free rooms on the post-partum unit. Brantley would need to stay for 2 more days to complete his full week of antibiotics. Since I needed to be at the hospital to nurse, I was nearly forced to spend 2 days in a recliner at his bedside. The neonatologist took pity on me, though, and approved our use of the NICU’s transition room, which is a mock bedroom where parents are able to stay when they are learning how to take care of their premature babies once they’re nearly ready for discharge. The room was not going to be in use for the remainder of Brantley’s stay, so I was actually able to sleep in a real bed until he was ready for discharge. It seems like such a little thing, but was truly such a blessing for us!
I don’t think I have ever felt such relief as when we walked out of the NICU for the last time with our baby in tow. As I look back on our time there sometimes I feel guilty about how terribly I still view the entire experience. I compare our story to that of other families and I think, “Wow. It could have been so much worse.” I see mommies who can’t hold their babies for weeks or even months. Who sit in recovery rooms waiting for their babies to come out of surgery. Who never get the chance to try to nurse. Who have to kiss their babies goodbye for the last time when the battle is just too much. And our experience pales in comparison. But I think, regardless of their experience, the NICU is a terrifying place for a mommy (or daddy, or grandparent). A place no one plans for. A place no one expects to visit. A place of uncertainty and fear. A place of helplessness. And sometimes of hopelessness. But the NICU taught me so many things. It taught me never to take for granted my child’s health, or even his presence in my life. It taught me to ask for help, because as independent as I’d like to think I am, sometimes I just can’t do it alone. It taught me that no matter how long the road seems, or how difficult the struggle, there is always an end. It taught me that sometimes the “mommy heart” knows best, whether anyone else believes it or not.
I will hug my son a little tighter tonight. Cuddle him a little longer. Tell him over and over again how much mommy loves him. And how proud I am for how far he’s come. How far we’ve come.

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