shenandoah

Although we visited Shenendoah National Park over a week ago, I haven't really felt compelled to write about it...until now. It was definitely spur of the moment but seemed like what we needed; a little adventure, a reason to get away from Baltimore, a chance to be outside and renew ourselves somehow.

It turned out to be all of those things. With AJ's parents and my mother, we hiked. It wasn't very far but felt strenuous and exhilarating nonetheless. We walked through fields of hay-scented ferns, manuevered carefully down steep, rocky, leaf covered paths, and enjoyed spectacular views of the sprawlng Shendandoah Valley. We spent a short time on the Appalachian Trail which runs the length of the park and enjoyed the brilliant foliage, already peaking at certain elevations.

AJ and I hiked alone to the base of a waterfall and enjoyed the relative quiet of the forest. We talked about the future and felt a lot of the hike was a metaphor for our lives at this point...lots of twists and turns, not quite knowing what lay around the bend, but walking it anyway. I don't think we answered any questions or solved any problems, but it was good to be there and do something together that we've always enjoyed.

alone again

AJ and I went back to work on Monday and my mom departed for the long drive home. And now we are along again. I awoke each morning this week and thought how strangely quiet, cold, and dark the house is, so different from everything we had expected, everything we had counted on.
Yesterday marked 2 weeks without Elise in our arms.
We talked for a long time last night about our pain, our loss, and our shared fear of what the future holds for us. We want so much to be more than just the two of us and Rocky, and yet that dream seems so elusive now, fraught with risk and worry and the sense that time is getting away from us.
I know this is all part of the process and I know there are brighter days ahead and I really look forward to standing in the sun again. But for now, we are in shadow, and we miss our dear sweet baby so much.

Afterward

The week after Elise died was filled with painful decisions, wonderful conversations, and an outpouring of so much love and so many prayers for which we will forever be grateful. People we hardly knew or had never met sent us their thoughts, hugged us tightly, told us their own stories of loss...and continue to do so. People we've known for a long time, our friends and family, were (and are) so good to us. They performed the mundane household tasks that really made life easier and took on the important work of listening to us without turning away from our pain.

We held a short visitation on Friday, and a funeral mass at our church on Saturday morning, followed by her burial in the children's section of a cemetary near our church. It was all so difficult but, at the same time, so necessary and beautiful.

The hard work of grief continues for us daily.

Elise's Story Part III

It was Monday night. We knew sometime soon we would let our little girl go home. We both dreaded the task of saying goodbye but, at the same time, she needed to be at peace. Hopkins was awesome. Elise was moved to a private room and she was assigned a nurse with no other duties for the night. When we entered her room, she only had the breathing tube and an IV. The nurse helped AJ get situated and he held her first as I sat next to him; I was afraid to hold her. Afraid of my emotions and afraid of how her little body would feel in my arms...that I may not be able to let her go. We talked to her and prayed for her and snuggled with her and tried to commit every moment to memory. We all held her for a long time and gave her so much love. The nurse took a picture of each of us with her. At first, the idea seemed wrong, but we felt we didn't want to leave this most important of nights uncaptured. We still haven't looked at those pictures, but I'm glad we took them.

About 4am my parents arrived from Indiana. My father had not yet met Elise and they spent some quality time together. My father always has his emotions in check and is very laid back about things; it was hard for me to see him where neither of those were true. My mom held Elise and sang to her. Uncle Dave and Aunt Shey arrived soon after and were able to say their goodbyes and give her a ton of love, as well. At 7am, we felt everyone had been able to love her and hold her and say goodbye and we didn't want to continue to prolong her life for our selfish purposes.

The nurse handed my daughter to me for the last time.

I sat in a rocking chair on a pillow. On my lap was our boppy pillow and on top of that, Elise. AJ was in a chair next to me leaning toward her with his arms encircling her. The physician came and turned off the ventilator and removed the breathing tube. We just looked at her beautiful face and felt so much love for her and sadness at the same time. She was the perfect size in my arms, warm and soft, and she was our baby, only 4 days old.

And then she was gone.

AJ new the moment her heart stopped beating. We continued to hold her for a while, kissed and hugged her, and cried with our families. It was heartbreaking for us but not for her...we knew she was now free, not bound to her body, in God's home.

While the nurses gave her a bath, took hand and footprints for us, and made a hand mold, we went for a walk. Bright sun streamed into the hallway and we hugged. We felt that we just did the most difficult thing we've ever had to do and now could begin the process of healing, of moving forward. We tried to find small blessings to hold on to in the midst of this difficult experience and we always maintained that she changed our lives, and many others, forever.

Over the next hour, our family went home and Uncle Dave and Aunt Shey waited to take us home. We gathered all of our things and the NICU team assembled a beautiful memory box. Leaving the hospital and Elise behind was so much more difficult than I had anticipated. AJ and I stood in her room at her cribside and cried. I couldn't believe how much I missed her already. I put my hands on either side of her little body swaddled in a hospital blanket and kissed her. I truly could not imagine ever leaving. This wasn't how it was supposed to be...at all. This little baby that we already loved so much, that was all we had thought about for so many months, she was supposed to be our daughter for the rest of our days and we were ready to be her parents.

But we knew she wasn't there. She was already finished with that body. She would be with us in whatever we did from then on, our angel. We kissed her forehead one last time and walked straight out into a gorgeous fall morning.

Elise's Story Part II

Sleep did not come easy on Sunday night. We were so tired and yet so worried, our minds did not stop thinking one thought after the other, though all we really wanted was to shut it off. I awoke to my alarm every 3 hours to pump and I think that was the time I felt the most alone. I sat at our kitchen counter and cried, wondering if Elise would ever benefit from the milk I was making. It was such a ridiculous substitute for what a new mother should be doing and at the same time, it made me feel like I was being productive for her.



Monday came quickly. It took the balance of the day to get things arranged for her MRI and angiogram. We spent the day with our little girl, talking with her and doing the few things that we were able to do in the NICU setting. We met with lots of doctors, including an amazingly kind and gentle neonatologist and another physician who is one of 30 researchers in the world to focus on brain injury in full term infants. Finally, we talked at length with the pediatric interventional radiologist who impressed upon us the risks of the procedure she would undergo and what the possible outcomes were.



As she left for her tests, we bid her goodbye and took a walk. Throughout the day, AJ and I had consciously and subconsciously begun to prepare ourselves for all types of outcomes. We both felt it was important to stay grounded and realistic and face the reality that we could lose our little girl. We didn't want our selfish desire to be with her to cloud our judgment if it seemed clear she wouldn't have any quality of life. At the same time, we felt like we were betraying her to even consider life without her, like we had allowed ourselves to lose hope. It was a gorgeous fall day and we talked for a long time about how in such a short time she had changed us forever. The day to day decisions that seemed so important to us before, the rushing to get more done in less time, the stress over work...it all seemed so pointless to us now. Elise had taught us about the most important things in life like love, family, faith, kindness...all these things that are so different from what our culture tells you are important. We knew that whatever happened to her, we would never be the same.



We sat in the hospital chapel and prayed and sang "Be Not Afraid" and "On Eagle's Wings." We held the cross my friends from college had sent to us and asked God once again to give us strength for what was ahead. We thanked God for each other. Shortly after we got back up to the NICU floor, we heard her name over the intercom and realized they had brought her back to the unit...she had only been gone an hour for what was supposed to take at least 2 or 3. AJ and I knew this was not a good turn of events and we again prepared ourselves for the worst news.



We sat in the conference room with AJ's parents, the pediatric interventional radiologist, the neonatologist, our nurse for the night, and the neonatology fellow. The radiologist explained that the MRI revealed there was diffuse swelling and widespread hypoxic damage to both cerebral hemispheres. Her brainstem, which controls primitive reflexes, was the only area that was spared. They postulated that seizures or the brain swelling had caused the widespread hypoxia. The damage was significantly more severe than anyone had anticipated or expected and they felt that there was no benefit to doing the angiogram with this information. It was clear there was no hope for meaningful recovery or any quality of life; basically, the decisions had been made for us.



AJ and I were devastated but amazingly calm. I think this was the information we were fearing all day and possibly longer. For AJ, it was the end of worry. We now knew the task ahead of us and although it would be the most difficult thing we had ever had to do, we knew we needed to be strong and let our little girl go home to God.

Elise's Story Part I

Aside from having gestational diabetes, my pregnancy was a breeze. I didn't experience morning sickness or have a lot of aches and pains. I gained about 20 pounds and continued to run (although slowly!) through the duration. I was excited to try natural childbirth and breastfeeding and cloth diapering and read just about every book and scoured numerous websites on the subjects. I got to know Harvey Karp and the baby whisperer just in case our baby was a little on the 'fussy' side. We were so excited about the new person that was about to come into our lives. We thought about how life would change, we dreamed about our new family, we looked forward to the hard work and joy of raising our baby.



My water broke on the night of Thursday, October 2nd. I knew that didn't bode well for having an unmedicated labor and delivery since we were 'on the clock' to deliver before the risk of infection became too high. Somehow, that just didn't matter anymore as the excitement of what was happening gripped us and we realized we would be parents soon. I was admitted and spent the night in the hospital, tossing and turning, nervous and excited about the day ahead...our baby's birthday.



Labor didn't start on it's own so my obstetrician started oxytocin the next morning. Things ramped up slowly but steadily and for the next 10 hours, AJ and I labored naturally. I have to admit, we were a great team, using almost every non-pharmacologic technique out there successfully. About 4 pm, I was exhausted and starving and started to lose my focus. After much discussion, I opted for an epidural. Three hours later, I was ready to push and did so for another three hours without much progress. The doctor on call recommended low forceps and our baby was out a few minutes later.



Elise Nora was born at 10:47 pm on October 3rd, 2008.



I can't believe how much I loved her the moment I saw her.



She needed some help perking up and was suctioned and given oxygen for a few minutes. After what seemed like an eternity of crying and praying, too afraid to look over at the warmer, she made her voice known...what a spectacular relief it was to hear her cry. She was in AJ's arms and then mine within 10 minutes and she was perfect, our sweet baby girl. We were a family with our whole life ahead of us.



But, that joy was so short-lived. She went to the nursery around 2:00 am to be bathed and evaluated and the pediatrician came into our room a couple hours later to let us know she was going to the NICU for observation. She commented on some unusual arm movements and turning of her head and eyes to the left. We were worried, but optimistic...she looked so good and acted so normally with us!



The news did not improve. I stop now to comment that the ensuing days were a horrendous exercise in lowering our expectations and coming to terms with worse and worse news.



By mid-morning, after long discussions with the neonatologist and a CT scan, we had the news that she had sustained bilateral interventricular hemorrhages (IVH). It was a surprising diagnosis since IVH usually affects premature infants and we weren't clear on why this had happened to Elise. AJ was in shock and so worried; I was worried but optimistic still and went about doing 'mom' things...trying to breastfeed, holding and singing, tending to my own wounds. We waited the balance of the day for the evaluation by a pediatric neurologist and, until then, the plan was to watch out for seizure activity and spend time with her. In retrospect, this time was a blessing. Each family member had time to spend with her, getting to know her, marveling at how beautiful she was, how you'd never know she was so sick just by looking at her. Her Aunt Shey took a ton of amazing photos while Daddy spent some quality time with his little girl.



By late afternoon, at the prompting of some of our family, we began to wonder if Elise should be transferred somewhere she could be offered the highest level of neonatal care. Her doctors agreed that she needed to be somewhere with access to a pediatric neurosurgeon and within 2 hours she was at Hopkins. AJ, Uncle Dave, Aunt Shey, and Grandma Nora followed and I had to stay another night in the hospital where I had delivered.



I know this was a difficult night for AJ. While it was heartbreaking for me to stay behind, I was relieved that she was being transferred and I had a lot of distractions...managing my own pain and bleeding, pumping every 3 hours and trying to get some rest...I knew there would be restless/sleepless nights ahead.



AJ had a night of little sleep and had to absorb an amazing amount of clinical information. Elise was intubated shortly after her arrival; she had become more agitated at rest and the team thought that sedating her may also help relieve some intracranial pressure. She had another CT scan and was evaluated by the pediatric neurosurgery team. It was then that the diagnostic picture changed. The neurosurgeons were certain that she had also experienced a subarachnoid hemorrhage (SAH), much more common in full-term infants than an IVH, and they felt this was more responsible for her clinical picture and could have caused the IV blood. We learned (and remembered from med school) that the most common considerations for SAH were vascular--either an arteriovenous malformation (AVM) or an aneurysm. The next step was to get an MRI to better evaluate the extent of bleeding and swelling followed by an angiogram, to try to diagnose and possibly repair a vascular problem. It was impressed upon them, though, that she had 'a lot of blood' in her brain and there was a great risk that the swelling from that bleeding would/could cause or already had caused brain damage.



I saw Elise for the first time at Hopkins on Sunday morning. She looked so big in the NICU where many of the babies were extremely premature. It was hard to look at her with at least 10 tubes/leads/lines connected, her eyes closed, the machine breathing for her. I wanted so much to hold her like a mama holds her baby, to feed her, to take her home. The NICU team was awesome. They let me take her temperature, change her little diaper, talk to her and stroke her legs, place my hand on her chest. We met with the physician team in the afternoon. There was really nothing new. Another CT showed that the bleed was stable but she had a lot of swelling in and around the brain tissues. What we could hope for was that no further bleeding would occur and that the swelling would start to subside...soon. No one was optimistic but we weren't hopeless either. We were hoping and praying for a true miracle.

After spending some more time at her bedside, we went home for some much needed rest...tomorrow was going to be a big day full of tests and, hopefully, some answers.

Forward

I don't blog.

In fact, until today, I thought the idea of writing one's own thoughts into cyberspace was a little self-absorbed and reserved for people who had way too much time on their hands (forgive me you bloggers that I happen to know and love).

But now I feel differently and I know those things aren't true. Maybe because now I feel like I have something to say, a story to tell that I want you to read, a desperate need to feel connected.

The story of our daughter's life and death will follow but I think it will take me some time to write. Many of you have heard this already but I feel like I need to have every detail down. As much as I want the pain to be less, I don't want to forget a single detail of her life, of our short time with our beautiful Elise.