Wednesday, February 29, 2012

Saying Goodbye

I have been writing and re-writing this post in my head for days. I knew that it would be the hardest, and honestly, I’ve kind of been avoiding it. Watching our baby girl slip away was much more difficult than I could have imagined, although I’m sure there’s nothing I could have done to “prepare” myself for it ahead of time. There is no man-made preparation for this—only the grace the Father so graciously gives, each moment that we need it. And His grace was there. Poured out on us as my husband prayed aloud, desperate for it.

By Sunday morning, I knew that our time with Elizabeth Grace was drawing to a close. Her color was very dusky, her breathing shallow. I was going to be discharged from hospital that afternoon. I had always said that I wanted to be able to take her home with us if possible, but now that it was almost time and she was doing so poorly, I felt uneasy about this prospect. We had been in touch with pediatric hospice, but the nurse was unsure if she’d be able to get out to us that day. The initial meeting is apparently a three hour ordeal. There was the option of taking Elizabeth to a hospice facility in Atlanta, but it was unclear if Onan and I would be allowed to ride in the ambulance with her, and I couldn’t bear the thought of her passing without us there. I began to feel stressed. I prayed for God to work out every detail.

I took a quick shower around 8 am and was just finishing up in the bathroom when I heard Onan calling for the nurses in a panicked voice. Elizabeth had begun to cough up some blood. Our nurse, Madeline, who had also been with us all day Saturday, quickly rushed in and helped to suction it out with the aspirator bulb. She listened to her heartbeat and told us that it was very faint.

We took Elizabeth over to the window and turned on the CD that a sweet friend had made for us. We sat, listening to the beautiful worship music, looking out at Kennesaw Mountain, crying, praying, talking to our baby girl. We stayed this way for a long time. At one point I was holding Elizabeth and her breathing became very labored. I wondered to myself if she may experience seizures. As soon as I finished this thought, she began to seize. It was as if the Holy Spirit had whispered it to me, right before I needed to hear it. I remained calm as we again called for Madeline, who immediately returned. The seizing had stopped by then and her vitals were checked. Still breathing, still a faint heartbeat. Elizabeth was fighting, but she was struggling so much to do so. She made some little cries at this point—the loudest she made the whole time she was with us. It was like she was sighing, long and drawn out. I kept telling her over and over, "It's okay, baby girl. You don't have to fight so hard."

Madeline came back a short while later and administered some morphine, which Elizabeth took very well. This seemed to really help her relax and any seizures she had after this were much milder. She continued to hang on.

By now my in-laws had returned to the hospital and had been able to spend some more time with Elizabeth. I was seen by my OB and was discharged but told that there was no rush for us to leave, which I greatly appreciated.

I began to pack up our things while my father-in-law held Elizabeth with Onan close by. I heard my husband say that it looked like she was having another seizure. He took her into his arms and I went over to hold on to her as well. She finished seizing and made one more little sighing sound as she breathed her last. I knew that she was done fighting. I sobbed. They were tears of sorrow, of course, but also tears of joy. I was just so relieved that she was in the arms of Jesus, no longer struggling for breath, perfect and whole. I was consumed with the image. I told Onan, “I think she’s done.” We called for Madeline and I told her the same. She put her stethoscope to Elizabeth’s little chest and nodded, “I don’t hear anything,” she told us through her own tears. It was a little after 1:00 pm. She cleared out the room to give Onan and I some time with our daughter, just the two of us.

We took her back to the window. Onan prayed: “Lord, we need your comfort.” We held her and we held each other. We changed her into a beautiful little white dress. I had ink pads and we put her foot prints in our Bibles, on scrapbook paper, in my journal. We took more pictures. Our family and a few friends came in to cry and pray and hold us too. After awhile, we knew it was time for us to let her go. Everyone left, once again, and Madeline told us to take us to take our time. She would call the funeral home to come and get her. We would leave her there; she would stay on our hospital floor until they picked her up.

We spent just a little more time with Elizabeth Grace before we called to tell our nurse that we were ready. One last kiss for each hand, one last “goodbye for now” whispered. We left the hospital late afternoon on an unseasonably warm day in February. And we are forever changed.

Still Holding On, Sunday Morning

Saying Goodbye

Thursday, February 16, 2012

The Gift of Forty-eight Hours

I had tried to prepare myself to say goodbye to Elizabeth. I wasn’t sure exactly what it would look like, or exactly how I’d make it through this, but for twenty weeks I’d lived with the knowledge that my baby girl would be born with a fatal condition and that we’d likely not have much time together. This twenty weeks was time that I’d graciously been given by God to grieve and plan and pray and enjoy Elizabeth as much as I could. I anticipated her arrival and inevitable departure with a mix of joy and trepidation. What I hadn’t really prepared for was watching my baby girl slowly decline over two day’s time.

Please don’t misunderstand. Those near forty-eight hours were the sweetest blessing I could have ever hoped for. Looking back I can see God’s sustaining presence throughout this time and how He graciously allowed so many precious memories to be made. We were able to talk to her and sing to her and pray over her and show her off to so many loved ones. We were able to change her diapers and her little outfits and feed her and take care of her physical needs and help to make her as comfortable as possible. She was so precious and beautiful and strong. I knew she would be strong. She thrived so in my womb. But when that life-support was taken away, she began to weaken.

By Friday night I was exhausted. All our visitors had left and the fact that I’d just given birth was quickly catching up with me. Elizabeth was doing well and Onan and I needed some rest. I did not want to send her to the nursery. The thought of her being placed in a bassinet and left on her own was too disconcerting for me. She’d been in someone’s arms since the time she was born. But trying to sleep with her in my arms wasn’t working. I attempted it for a very brief while and had woken up feeling panicked about how she was doing.

My night nurse, Cindy, had the solution. She’d actually had it all planned out before I’d even voiced my concern. She would simply wear Elizabeth in a sling as she worked. If a patient needed her, Elizabeth would be temporarily handed over to someone else who could cradle her. The receptionist on our floor apparently loved newborns and would be thrilled to take a shift. She would not go to the nursery, she would not be put down. She would be held and cared for through the night. This wasn’t exactly “hospital policy”, but this is why Cindy worked the night shift on weekends--it was easier to bend the rules. I was able to sleep a solid couple of hours on Friday night and awoke Saturday morning to my sweet nurse pulling a rocking chair into our room because she’d discovered Elizabeth loved to be rocked. She’d figured out a new, more conducive head bandage for her and had her wrapped up in a knitted blanket that someone had made especially for NICU babies. I could not have been more content with how Elizabeth had spent that time away from me.

Saturday was a full day of Elizabeth Grace. Our children and families and friends came back to see her and hold her and love her. The neonatologist on call continued to check on her. We were told that as she became weaker there would be periods where she would struggle to breathe and that we should expect her color to become dusky. We nodded and said okay, not really grasping how hard to watch this would be. She also wanted us to know that as her breaths became more shallow and spaced out, Elizabeth would go into a “comatose-like” state and would not be able to feel any pain or discomfort.

Elizabeth gave us a few scares throughout the day. Just as predicted, her breaths would become gaspy and she’d take them further apart. Her color would darken to a bluish-purple and we’d call for our nurse. Then she would start to do better. Her normal color would return and her breathing would regulate. Elizabeth Grace was a fighter. We continued to care for her.

Cindy was back on Saturday evening and took care of Elizabeth the same way she’d done the night before. Before taking her late that night, she promised that if Elizabeth seemed to be doing poorly that she would bring her back to us immediately. Elizabeth held on through the night, but when she returned to us early Sunday morning it was evident that our time with her would soon be drawing to a close.

Here are some pictures of our day with her on Saturday, February the 4th.

Corby and Lizzy

Grandma and her Girls

Hanging Out (Charlie was such a proud big sister!)

Loving our Girl

Love from Aunt Bebby

Dear Friends

Holding on Strong

Elizabeth and her Favorite Nurse, Miss Cindy

Saturday, February 11, 2012

Elizabeth's Birth Story

I’ve been gathering up my thoughts and my courage to write about our time with Elizabeth Grace. I plan to do so in a series of posts. I want to share the details because I feel like so many of you have been so invested in our story. The sheer amount of facebook messages I’ve received in my inbox from people I’ve never met are a testament to that. To those who have been praying so very faithfully for us and who have invited others to do so, Onan and I simply can’t tell you how much that has meant. How much we have felt those prayers. And how I know that’s part of the reason we’re still standing right now. Thank you, from the bottom of our hearts.

Thursday February 2nd, the second night I went in to induce labor, was the right night. God’s timing is always prefect. It was calm, quiet and we were immediately given a room at the end of the hall. My nurses were incredible. My night nurse for both Friday and Saturday only works weekends and I would not have had her if I’d given birth to Elizabeth on Wednesday. And, as it turned out, I needed her—which of course, God knew. It was the same situation for my day nurse that was on for both Saturday and Sunday. I cannot overstate the immense gratitude I have for these ladies and how much they came to mean to me during our hospital stay. My labor and delivery nurses were exceptional as well. Everyone was so kind and empathetic. More answered prayers.

At 8:30pm I was given a drug called cytotec to help soften my cervix and get contractions going. It's administered every four hours and up to four doses are allowed to be given. By my fourth dose around 9am the next day, I was eight centimeters dilated, totally thinned out and in desperate need of the epidural! I received it at 10:30 and by 1:00 pm, it was time to push.

I prayed for peace and it was poured out on me. After only three pushes, Elizabeth was actually born in her bag of waters. One of my birth plan requests was that my water not be broken, if at all possible. From the research I’d done, it was clear that babies with anencephaly have a better chance of surviving delivery if this is the case. It wasn’t broken until she was safely out and I have no doubt that this helped ease the stress of delivery on Elizabeth greatly. It was 1:27 pm.

She was immediately placed on my chest. She was squirming, kicking and making little squeaking noises as she was cleaned up. She needed minimal suctioning and began breathing on her own right from the start. This was a huge answer to prayer. From the time we’d been given Elizabeth’s diagnosis, I’d been praying that she would make it through delivery and that we’d be able to spend some time with her. And here she was, pink and breathing, moving and alert. Five pounds and thirteen ounces of perfection.

We weren’t sure how much time we’d have with her, but we had this. These sweet moments where Onan got to stand with her and hold her little hand as she was dressed and swaddled. We had this. The priceless opportunity to introduce her to her big brother and big sisters and all of her grandparents and her aunt and cousin and so many friends.

The photographer from Now I Lay Me Down to Sleep had been waiting with our family while I delivered. He came in and captured all of these moments for us. I cannot wait to receive his pictures. As he left, he told me the count was "about three million" and I don’t think he was exaggerating all that much! I’m so thankful for the many pictures that were taken to document our time with Elizabeth and to help us remember. Until we receice the professional pictures, here are some of the "amateur" ones that were taken.

Thursday night, ready to begin the induction

Keeping a Labor Log on Friday Morning

She's here! Friday, February 3rd, 1:27 pm. 5lbs, 13 oz. 17 and a half in.

First Diaper Change, by Daddy

Totally in love...

Family of Six

Thursday, February 2, 2012

Still Waiting

Well, here we are, last night, heading to the hospital after being told to come on in. We got there around 6:30 and were told to head to the waiting room. I knew things were busy because of how crowded it was. Lots of people, lots of noise, lots of waiting. Not exactly how I'd envisioned starting off Elizabeth's induction. I was called back after about an hour and checked in, given a wrist band, told I'd be in room 308, but that I'd need to head back to the waiting room for a bit. After another hour of waiting, the charge nurse came and got me. She informed me that since we'd been called to come in, there had been a rush of women in active labor who had also come in. Every room had been taken, and she had a couple other ladies on their way who were pretty sure their water had broken. She said I was welcomed to stay in the waiting room, but with no end in sight, it would probably be better to just go home. She would call me as soon as a room became available and she was so very sorry that this was happening. I told her that I understood, this was labor and delivery, these things happen, right? Right. So, off we went, back home.

We left our hospital bags in the car, came in and enjoyed some time with our family (my parents and in laws are here, along with my sis and nephew!)and went to bed. At 5:30 am, the charge nurse called me to say that they were still packed and suggested that they put me on the list to be induced tonight. So, same drill as last night, call at 5:30 to make sure a bed is available, go in if so, and start the induction tonight.

So, yeah. Kind of an emotional roller coaster, but through all of this the Lord has been faithful to remind me that He is sovereign over all things, even when they seem messy and chaotic. His plan, His timing, they are perfect. I got to sleep in this morning and am now enjoying these scenes:

(My dad with my kids. Nothing better!)

(Mom and Sophia)

(Kisses for Grandma)

(play-dough time!)

(Maria in the kitchen, of course!)

(My sis and nephew!)

Not too shabby, and much more fun than the hospital waiting room. :) Not to mention, this is one more day that I get to keep Elizabeth safe inside. She's kicking and wiggling and hiccuping as usual, and I am once again so thankful for this time that I have with her.

I know that I keep saying this, but I am profoundly humbled by the prayers going up by so many. Truly, it's overwhelming and "thank you" seems like too trite a thing to say. But we are grateful. Deeply grateful for your love, prayers, support and encouragement. We feel it and we ask you to please continue, knowing that you will. Thank you.