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.