The longest Week ..

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With two weeks to go Genevieve's (Gigi) Dr. Seuss nursery was ready. My husband built and painted custom pieces just for her and my mother in law went crazy buying every Dr. Seuss book she could get her hand on!. I made sure her clothes were washed, folded, and neatly put away spending hours trying to decide what outfits I should bring to the hospital to take her home in.  We did the labor class, the newborn, class, the breastfeeding class and we even practiced putting diapers on stuffed animals and taking them in and out of the car seat to when Gigi was ready to come home we didn't look completely clueless. We had spent months preparing for the arrival of our child but our expectations of parenthood never touched the reality that we experienced. 

My pregnancy was literally perfect, not one issue until week 39 when my blood pressure was high enough for my doctor to decide to induce me a few days early, after all Gigi was full term and healthy so my husband and I were excited that we'd get to meet her a few days earlier than expected. When my water broke there was meconium present, a potential complication that meant the NICU team would be in the room during the delivery but the doctors and midwives weren't concerned as she was showing no signs of distress via the fetal monitor. After a little more than 2 hours of pushing I felt her come out and without even seeing her, knew something was wrong. The doctors that delivered her had looks of shock and horror on their faces as they passed her to the NICU team, she had no heartbeat and they were trying their hardest to revive her breathing so they could get her into an oxygen incubator and into the NICU to save my baby.

I got a fleeting glace of her being rolled away with a team of 10+ doctors following her. I just looked at my husband in bewilderment as we were given the explanation that at some point during the delivery she had been deprived of oxygen but they didn't know what happened, why it happened, or how long she was without oxygen as she was showing no signs of distress during the labor and delivery. Ten minutes later the head of the NICU came in and told us that Genevieve's lack of oxygen would lead to brain damage but the extent of this damage could range fro minor developmental delays to death. They explained that in cases of HIE treatment is meant to support the baby's affected organs however in Gigi's case, they had way to determine which organs had been affected and were most concerned about brain damage.We are so very lucky to live 20 minutes from of the best Children's hospitals in the country because they needed to get her to the NICU at Children's Hospital of Philadelphia (CHOP) within six hours to start a 3 day cooling process with the hope to stop and reverse the damage that had been done. Two hours later a helicopter flight crew of doctors wheeled my baby into my room and explained they would be at the CHOP NICU within 30 minutes, I said goodbye to my husband who went to be with our baby while I sat in the hospital trying to figure out what they hell was happening. 

We spent the next 7 days driving back and forth to the NICU two to three times a day in a state of limbo because the outcome of  Hypoxia ischemia Encephalopathy (HIE) is dependent on the child's symptoms and MRI, EEG  scans, and ultrasounds and all of those things take time. Additionally, each case of HIE seems to be completely unique which again, left us going back and forth between hope and despair. After 3 days of cooling and a day and half o warming Genevieve's little body was recovering but the real answers wouldn't come until after the neurology team looked at her MRI, we had the meeting scheduled with them for 2PM on 11/4/16. When we arrived to visit Gigi I rubbed her chubby little legs and played with all her hair, and the nurses even let me hold her for the first time but as I held her  I saw her open her eyes for the first time and they weren't reactive to me rather they were rolled back I knew in my heart how this meeting was going to go and so did my husband. We met with Genevieve's medical team where they showed us her MRI and explained what was going on or in her case, what wasn't going on. She was showing no signs of brain activity and even through she wasn't completely relying on a ventilator to breath her brain stem was damaged and even with support she had a 50% chance of making it to age 2. We had already had this conversation, we knew it was a possible outcome but we told the doctors that next morning we would remove her breathing tube.

On 11/5/2016 we arrived at CHOP at 9AM and by 9:30 they had removed her breathing tube and for the first time I got to see my baby without tubes in her mouth and wires running from her body. She was wrapped in a pink and white blanket and I brought the newborn hat my mom knitted for her. They moved us to a room with no equipment aside from her morphine IV and we spent our first and last day together as a family. At 6:05 that evening she passed away in my husbands arms and we left CHOP for the last time without our child.  


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  • Hello and welcome to Share!  I am so very sorry for the loss of your sweet Gigi.  There is nothing so heartbreaking as having to say goodbye to your little one.  The pain is unimaginable and I'm praying for moments of peace for you in the days to come.  I lost my twins just shy of seven years ago after they were born too soon.  Those early days are so hard, rest when you can and take deep breaths when you are able.  I look forward to getting to know you better and hearing all about your beautiful girl.  Many hugs.

    Stacy

  • It's with a heavy heart that I welcome you to Share.  I am so very sorry for the loss of your sweet Gigi- what a sweet name.  I will keep you in my thoughts as you and your family find your way through these first days and weeks.  Know we are here to listen, and so many of us, myself included have been where you are.

    Lauren

  • Welcome to Share Jackie. I am so sorry for the loss of your baby girl Genevieve. I smiled when you described her nursery theme. So sweet and educational:) My heart breaks for both you and your husband. I hope that you both continue to lean on each other and visit us here for support when you need it. I found this site shortly after losing our son over 7.5 years ago and it's helped guide me through so many feelings.

    Keeping you in my close thoughts,

    Lindsay