NICU Stay

Tennyson's "room" in the NICU

    The emotional toll of a NICU stay is great. I tried to keep a little journal to process my emotions and thoughts during our stay. Below are a few excerpts. I reorganized pieces into topical entries. Some days or moments were better than others. It's a journey. I'm grateful for the care we received, but also for us to have come to a point of moving on.

He's So Cute
      I know every parent thinks her child is the cutest thing ever. I've joined them. Oh my, I just can't get enough of his cute little self! He's absolutely amazing. 

God's Provision
     The hospital is an hour away from our home. Between here and there is a mountain that becomes rather treacherous in the winter weather. Driving from home to the hospital and back each day was a daunting task. Furthermore, leaving my baby was inconceivably heartbreaking. The nurses, though, insisted that we returned home and resumed a bit of normalcy in life. Sleep in our own bed. Go out for lunch or dinner at a restaurant. Go to see a movie. Do something other than remain at a hospital. The suggestion was unfathomable to me. How unnatural for me, a mama, to so easily leave my baby to seek my own pleasures. No, I wanted to be with my baby. 
      Upon my discharge from the maternity unit, we learned of a room available within the NICU that is used for transitioning babies (and parents) from the nurses care to the parents' care prior to release. We immediately pursued the possibility of staying this room whenever it was not in use. Why allow the room to simply sit empty when we could stay and be there for Tennyson 24/7. In our two week stay in the NICU, we ended up having to stay at home instead of the parents' room only 3 or 4 nights. We were told that even a two night stay was quite rare. As part of the stay in the room, we were each allowed a breakfast, lunch and dinner tray each day for free. The amount of money we were able to save by not having to drive or stay in a hotel in addition to meals was significant.  Beyond finances, though, it allowed us to be with Tennyson at all times and care for him to our greatest ability. This aspect weighed heavily on our ability to take him home prior to him meeting the weight requirement. As the doctor had said we were already doing everything they could do for him so why not allow us to continue doing so at home. How grateful I am God made a way for our family to be kept together during these difficult weeks, and even provide means of lessened expenses. 
        Tennyson's sudden arrival didn't leave much time for us to finish preparing. In fact, just that morning I made out a list of items we still needed and created a calendar to get it accomplished. He had other plans! Though we didn't even have a crib ready yet! We had planned to make a trip to IKEA for it that weekend. His early arrival also meant that we were at square one with diapers and clothes. We had nothing for a preemie size! Being in the hospital myself and then staying there with him until he was released didn't leave much of an opportunity to get those items (as well as post-op/postpartum items for myself). Incredibly, we began receiving an outpouring of love from friends and family. They wonderfully asked us what we needed and filled in the gaps. One sweet couple of friends even offered to pick up the crib and accessories for us.. 2 hours away. The generosity of gifts and time has blown me away. I again attribute such a beautiful presence in our lives at this time to be by God's direction. These people in our lives, they make life rich. It seems insignificant to merely send a thank you card for the postpartum items, baby items, phone calls/messages, cleaning and taking care of our home while we were away, support and encouragement we received, and so much more. Simply incredible. God provided through these individuals, and that is such a beautiful thing to witness in life. 

Teeny Tiny Tennyson
    I chatted a bit with another NICU mama today. Her baby was born at 30 weeks weighing 3 lb. 12 oz. Tennyson was 3 lb. 11.4 oz born at 33 weeks. He was three weeks further along in gestation, yet the same size as her little girl. For some reason, I didn't fully believe he was "growth restricted." He was just my teeny tiny Tennyson, even when he was within me. It's remarkable to see two babies that are two different levels of development, yet the same size. 
     A set of 30 week twins has joined us in the NICU. One of the twins is Tennyson's size! A twin at 30 weeks is the same size as my single baby at 33 weeks. Wow. 
     I forget how small he is. On occasion a full term baby is briefly brought in to the NICU. My initial thought is: he/she is huge! I see tiny premature babies each day, and lose perspective on the size of a term baby. I remember when David and I were shopping for newborn clothing prior to his arrival, and I thought those pieces were so small. The preemie clothes were just unfathomably small. I look at those same newborn clothes now and think they're massive. The preemie size seems an appropriate baby size now. It takes a comparison to reshift perspective. 

God's Protection
      We were finally able to bring Tennyson home! I'm ecstatic for us all to be home and now able to grow into our new normal together! We actually broke the "rule" by coming home while still under the weight requirement of four and a half pounds. One nurse I spoke with couldn't believe we are home with him still having not yet reached the four pound mark. Moreover, he's not on any medication or needing any equipment. She repeatedly asked if I realized how lucky I was for him to be in such phenomenal condition. I do. 
      The week of his birth (though we had no idea we would be delivering so soon), Tennyson measured within the 5th percentile on the ultrasound. It was disappointing to hear, but we maintained hope that he really wasn't "growth restricted" but that the ultrasound was highly unreliable or that he was just taking after the two of us in simply being small. 5th percentile did not speak well of his level of development. Yet, he was born with a loud, strong cry- a sound none of us had expected to hear. I had prepared myself to not hear that beautiful cry. I knew he was "behind." He also didn't receive the shot to quicken his lung development due to such a fast labor. Similarly, he should have needed respiratory support, but he was only on room air nasal cannula for a day. He exceeded the expectation for this suspected developmental "delay." In fact, he exceeded nearly all expectations for a "growth restricted" 33 week preemie. He latched and nursed beautifully on day two (he would later show some difficulty with nursing, but continued to be able to do it though he shouldn't have). He very quickly received less tubes, lines, and interventions each day. He was holding his own far before when he should have been able. I see some of these other babies in the NICU with us, and I'm so grateful for how well Tennyson's done. Though his growth restriction caused him to be the size of a 30 week gestation baby, he certainly continued to develop. I whole-heartedly believe God's hand was at work. He knew this little guy was going to come early, and so he made sure he'd be developed to the point he needed to be to be on the outside when the time was right. 

Future Plans
     Although we were told that we should be able to continue having children, I keep thinking: "can I do this again?" This high-risk pregnancy care. This surgery. This NICU care. This separation. This heartache. The nature of his birth wasn't a one-time occurrence that would allow me to try a VBAC next time. Next time and all future times will continue to be high-risk, premature birth via c-section and a NICU stay. The emotional toll of being separated from my baby and watching him work through the development that should have occurred in my belly is tremendous. How do I endure this journey yet again for another child in the future? I'm not sure I'm strong enough. 
       Then, I look into his sweet face and I'm confident that I would certainly do it all again. How precious is this little life. What if I had known prior to pregnancy what I know now and decided against trying to conceive and carry a baby? I wouldn't know the immense delight of getting to know who this person is and will grow to be. I imagine that to be the case for a future child. How could I possibly not be equally excited and enthusiastic to welcome another little being and watch him/her grow into his/her own person? Love really surpasses the hurdles challenges bring. I am strong enough to do it again.
        I realize that in asking if I can do this again I've excluded the role God has had. As I look back at so many aspects of the pregnancy, delivery, or his condition I see the presence and work of God. He protected us. He provided for us. It isn't a matter of if I can do it again, but if I believe that He can. 
      Yet, the desire to (physically) accomplish something is not the same as the ability to do so. While the life of this child is far greater than finances, it must still be considered that high-risk pregnancy care, c-section delivery and recovery, and a NICU stay amount to an astronomical price tag even with insurance. Honestly, it feels insurmountable. It feels like we'll be paying payments for this single birth for decades, and to consider adding to it would be unwise. 
     Though the doctor was encouraging about our ability to have another child in the future, the presence of limitations are undeniable. Perhaps it's time to accept an alternate desire/dream for our family (size). I'm not there yet. I love our little Tennyson, and am so grateful for him. Yet, a part of me is also grieving the children I won't be able to have. As a woman, the ability to have children is very dear. 

Guilt for Prematurity
       Each time the doctor or nurses make statements like, "he isn't suppose to be here yet" or "he's a preemie" my mind follows with saying "because I couldn't carry him." In fact, I won't be able to carry any of my babies to term. Even though I know there was/is nothing I can do about an anatomical abnormality, I still feel responsible and guilty. I still feel defective and less of a woman for not being able to do what women should be able to do. I realize this is an absurd statement, but in this moment this is my struggle. In this moment, my heart aches to do what my body will not. I wish with all my being to have been able to carry him healthily to term and avoid all of this. I wish we did not have to be in this position again to have additional children. I feel personally responsible and guilty for the perpetual prematurity involved in desiring children. 

Expectations
      Regardless of the fact that he is a preemie, I kept thinking of him as simply a small newborn. After all, beyond the first few days he has been without all the tubes and interventions seen in the other babies. I'm frustrated when he doesn't nurse well, but the nurses remind me that he shouldn't be nursing much because he's a preemie. But I've seen him nurse well and I know he can do it. Show me your potential and the bar will continue to be set high. Unfortunately, that doesn't work with a preemie. A preemie says he can do it one day and then the next day he simply doesn't. Each set back hits me with the full force of disappointment and discouragement (not at him, but at the situation). 
        The doctor recognized my tendency to set and hold to expectations. He reminded me that the expectations can have a way of diminishing joy of the moment. It's true. I'm more concerned with his progress than I am of simply enjoying him and the moments we share. I must relax and soak in these moments with him aside from expectations. 
       This letting go of expectations and accepting him and the situation of prematurity has made a big difference. I'm more relaxed and more enthusiastic with him. I'm more of the Mama I need to be. It's important for me to pause and refocus myself on the Mama I need to be- the Mama he needs me to be. 

Emotions Run Rampant
     Tears have been my daily companion. No other NICU mama has shown any signs of distress or weepy emotions for her baby being in such a place and in such a state. Then there is me, the mama who has the most emotions despite having the healthiest preemie. I don't know why this was the case. I just know that I miss my baby more than words could express; there are only tears. 

Bonding
    I was wheeled into the OR with a baby belly, but wheeled out without a belly or a baby. The disconnectedness is great. It's beyond unnatural. This baby that I had bonded with anonymously in my womb was no longer a part of me on the inside or out. Those potential moments of touch and bonding following his birth were gone. Stolen. The brief glances into the isolette and touches through it's windows aren't enough. Everything in my being screams for him to be with me. (That scream wouldn't subside for each day of the two weeks we were there.)
     I missed those bonding opportunities that would have been present with a non c-section & NICU birth. A part of me also misses the ability to have the opportunity to try it again next time. To receive my newly birthed baby into my arms for the first time. To pause in the moment to hold and cuddle him/her. To join with my husband in immediate celebration of this life and his/her joining our family. So many moments that I didn't have and will not have. 
      I feel like I've had to fight for the same bonding experience. It was nearly the end of the day before I even got to see him. Imagine being wheeled into a room and being told this baby is yours. You didn't see or feel his arrival, but here he is- yours. I knew he was mine, but I missed that intimate knowledge that came from a "normal" birth. 
       Though I had already planned to breastfeed, the act became more important than ever to me. It was our time to bond. It was special and I cherished it. We did well together until the time came in which we had to return to our home for the night. After receiving bottle feeds all night, he was reluctant to accept direct breast feeding the next day. My heart sank. This was the last bonding moment I had left. I cried and cried. The staff looked at me rather strangely because to them it didn't matter how he got the breastmilk as long as he got it. While I know this is true, the act of directly breastfeeding still holds a different value to a Mama. He hasn't totally given up on direct breastfeeding and neither have I. We have, however, accepted both breast and bottle (breastmilk) as a means of feeding each time. It's a lot more work, but it's worth it to me to have that moment together.