No one expected her to cry. The Newborn team initially said she was doing better than expected. She first was on some oxygen, then CPAP (forced air through a mask), the nurse told us. I was wheeled back to my labor room for my immediate recovery and Chris soon after went to check on Mabel. While he was gone, those moments were optimistic- happy even. My baby had cried!
Mabel gets a little oxygen. Look how pink she is!
When Chris returned, he brought news. Mabel was on the ventilator. They were monitoring her oxygenation saturations (her “sats”). She had a chest xray, which showed a pneumothorax on one side (air leaking into the lung cavity- making it difficult for the lung to expand fully). Her rib cage looked distorted- another sign of pulmonary hypoplasia. And she had ascites- fluid in her belly, which we didn’t really know why, but it’s generally not a good thing.
Luckily at that time my immediate recovery was just about done, so the nurses packed me up and brought me over to really meet her.
There she was on her warmer with all her wires and tubes. Her little chest rose and fell with the rhythm set by the ventilator. You could see how hard she was working to breathe. The doctor explained to us that her sats were in the 70s, which were low. The goal is to keep them in above 95%. She’s on the ventilator at maximum oxygen. They could treat the small pneumothorax by placing a chest tube, but because of how hard she was working, they didn’t think she would survive that procedure and doubted it would work with her small lungs anyways. For now they planned to just watch her. They had done some blood gases after she was put on the ventilator, which were slightly improved from the gases they had done before. The doctor let us know that she was sick and struggling. I could tell our time with her was limited. We didn’t know just how limited yet. My hope was she would be able to meet her family, some of whom were en route.
My first good look at Mabel.
She looked so precarious on her warmer, so I was surprised when the nurse suggested I do kangaroo care- putting her skin to skin. With the help of another nurse holding the ventilator tubes, the newborn nurse placed her on my chest. She was warm and little and mine. I wanted her father to hold her, so eventually the nurse passed her to Chris and I just watched as he smiled, holding his daughter for the first time. She soon came back to me and I held her so I could see her eyes and marvel at her light hair- which clearly came from her dad. It was hard to see what she really looked like, because the ventilator blocked her mouth and its tape distorted her features a little.
Chris holds Mabel for the first time
Her hair was blonde.
While holding her I started to feel lightheaded and a little faint. I had spent a lot of my labor vomiting and could tell I was dehydrated, despite the two liters of IV fluid I had received. So we placed Mabel back on the warmer, so I could be tended to back in the labor room. I knew she was in good hands with the newborn nurse.
While back in the labor room, my nurse gave me more IV fluids and we contacted family. We let our immediate family know that she was struggling and we didn’t know how much time we would have with her. Our message was come now or come soon, if you can. My parents were already on their way- we called them when I was in labor and they got on the road as soon as we told them she was born. My sister lives in LA and Chris had let her know I was in labor around midnight our time. She booked a flight for 8:30am that morning. We called my brother who also lives in LA- it was 6am his time and he was able to get on that same flight. They would get in around 7pm that night. Chris’s parents live in Lexington and the Chicago area and were on flights the next morning. We knew our time was short, but my hope was that Mabel would hold on at least until that night.
Just when I was feeling better and we made all our phone calls, the Newborn Unit called and said we should come back. I knew that was not a good sign. I hurried into a wheelchair and my nurse rushed us over.
When we arrived I could see Mabel’s sats were in the 50s-60s and she looked purple. I could tell she was getting worse. The doctor explained that she had another xray, which showed that one lung was completely collapsed and the other had a large pneumothorax. She was working hard- so hard that they were giving her morphine to keep her comfortable. They wanted to put her back on my chest- they were firm believers in kangaroo care.
Then the most amazing thing happened. As she was skin to skin with me, we could see her pink up to her normal color and I watched her sats creep back up into the 70s. Just being on me was not only comforting to her, but healing as well. She was strong when she was on me, close to my heart and my skin, my warmth, my smell and my heartbeat was familiar to her. So on me she stayed as we made some final arrangements. We called for the chaplain- Chris and I liked the idea of a blessing for our Mabel. And we called our parents. I was frustrated they weren’t there yet- they were only coming from Massachusetts and if they left when they said they were going to, they should have been there. What we didn’t know was that they had been in New Hampshire skiing, so the two-hour trip was more like five hours. But Mabel was stable for the time being and she had some admirers. My whole midwife and doctor team came. I was so so touched that they all came in. In the absence of family, they were my family. Aside from me and Chris, no one knew Mabel as well as they did. Three of them even knew Mabel was Mabel (that she was a girl- they had known from my CVS results but kept it a secret all that time!). And we were also joined by one of the midwives and doctors I work with. All these people surrounded Chris, Mabel and me, meeting her and witnessing her life. Looking back, I can not be happier that they all met her.
As we waited for my parents, I told Mabel all our plans for her. I told her about the house we had bought in the town with good schools just so we could take her home and raise her there. I told her how she was going to be a snowboarder- only natural after she’d be spending so much time in the braces for her clubbed feet. I told her how her daddy was going to build her things. I told her about each of the people who came to meet her and how they knew her through our pregnancy. The nurse also helped us make hand and footprints in ink and clay from a kit my sister gave us. Having those clay prints are now the only physical thing I can touch and feel her contours.
My parents arrived and the chaplain then gave a blessing, which turned into a baptism at my father’s request. I was raised Catholic and though I don’t subscribe to any particular religion, I could tell it was important to him. After Mabel was blessed and baptized, the Newborn doctor came over and told us he thought it was time to take out the ventilator. From our meeting prenatally with the Newborn doctor, they knew we ultimately didn’t want our baby to suffer. If she was going to die, we wanted to make her as comfortable as possible. I had been watching her sats and they were back in the 50s-60s. She was getting half the oxygen she needed. I knew from what the doctor had told us that there was nothing more they could do. Even kangaroo care could only help for so long. It was time to say good bye to our baby and let her go in peace.
We had to decide how we wanted to do the next steps. We could go back to my labor room and pass our final time with Mabel there or they have a room in the Newborn Unit called Caroline’s Room, a smaller room with couches, made for times like these. We decided Chris and I would be with Mabel while we took out the vent and then bring her to Caroline’s room where my parents would be waiting. I didn’t want to have my final moments with her in my labor room because when I returned to work I didn’t want that room to bear those memories.
They gave her more morphine and while she was on my chest, the nurse took out the ventilator. For the first time, I’d see my baby’s face. I looked down at her and she opened her eyes and looked up at me. It was incredible.
She looked right at me.
They wheeled me into Caroline’s room and we sat with her on my chest with Chris’s hand on her back, so she could be most comfortable. I could tell that she had stopped breathing and the doctor checked her heart rate- it was present but slow. So I held her close and a few minutes later when the doctor came, her heart had stopped and my Mabel was gone.
Mabel’s last moments in her parents’ arms.
I took her down from my chest so I could see her- really see her- and she was so cute. She looked just like a baby- an everyday baby you’d see in someone else’s arms. She had Chris’s nose, my small chin but we couldn’t tell where her pouty lips came from. She was all cheek! Such big cheeks which I attribute to my high chocolate consumption in pregnancy. Her ears were a little squished- the only sign really of the low fluid- and her feet were clubbed. But who knew just how cute clubbed feet are! Those little feet were marveled at while we were doing kangaroo care earlier. Many pictures taken of those cute little feet- they were just adorable. Even her toes were special- two of her toes were webbed, which reminded us of a friend of ours who has webbed toes too. The medical term for it is syndactyly. I myself was born with an extra finger on one hand (removed as an infant), which is called polydactyly. So Mabel was “dactyl” just like her mom!
Mabel’s syndactyl toes!
My once over of my daughter.
After my thorough once over, Chris held her and then my mother and father. We gave her a sponge bath and dressed her in a little pink outfit my midwives had given me. We had no clothes ready for her- the carrot outfit had not come in yet (delayed from a snow storm) and my midwives came through yet again. We dressed her up in non-hospital attire. She had her own outfit and we wrapped her in her special blanket and she didn’t look like a baby that had been sick. She looked just like a baby.
Doesn’t she look just like an everyday baby?
We invited my cousin and her husband to come meet her. My cousin, who had been my ultrasound buddy, who brought me ice cream in times of need, who could be called upon last minute. I got to introduce her to Mabel and point out all her little features. Her chocolate cheeks, her little feet. I was a new mom, displaying her baby. Again, looking back, I cherish all the time Mabel got to spend with my family (my family by blood and my family by work).
Look at her feet! Look at her toes!
After I noticed Chris was nodding off (we were now facing about 36 hours of essentially no sleep), I told my family that we wanted to be alone with Mabel so we could say our final good byes. When they all left, I played our wedding song (Hallelujah by Jeff Buckley) while we held her. I began nodding off myself, listening to that soothing song with my baby in my arms. I wanted to keep her forever, but I knew that we couldn’t keep her much longer. We had to say good-bye. The nurse came in to check on us- sobbing, I asked for a few more minutes. And when she came back again, it was so hard to hand her over. I just wanted to parade around the hospital, saying Look at my baby! Isn’t she sweet? I had a baby. This is my Mabel. I wanted to show her off so bad. I wasn’t ready to give her up, but I knew I’d never, ever be ready. It was time.
I handed over my baby, never to hold her in my arms again.
“How very softly you tiptoed into our world, almost silently, only for a moment you stayed. But what an imprint your footsteps have left upon our hearts”