Faces of Loss, Faces of Hope

Tami

Mama to Corinne Ellery McCurdy

Born February 4th, 2010

Gained her Wings February 18th, 2010

Jackson, New Jersey

My EDD was June 3, 2010 and my pregnancy was "progressing perfectly" according to my doctors. On February 1st, I couldn't keep anything down and figured that I had a stomach virus that was going around. My DH was just getting over a stomach virus and he teaches middle school so he was around a bunch of students that also had a strain of stomach virus. Being pregnant I monitored how I was feeling and noticed a very low fever. 

The next day (Tuesday) came and I was feeling a lot better- no fever and I only threw up one time. By Wednesday I was feeling back to my normal pregnant self until around 11:00 pm when I threw up my pre-natal vitamin. Soon after I noticed that my urine was getting dark. Now I started freaking out. I certainly did not want to become dehydrated for the baby! My DH asked if I wanted to go to the emergency room and I told him that I wanted to wait a few hours and see if my urine started looking lighter. I stayed downstairs and waited and hoped that I would see a difference- for the better of course. I talked to my baby and prayed that she would be okay. I prayed to God, my father-in-law, and my best friend that they were watching over my sweet baby. Around 4:00 am I saw a difference and it was not good- my urine was getting darker! I went upstairs and woke up my DH. I told him that I was getting in the shower and we were going to the hospital. I told him that he should e-mail his school lesson plans so his students would have work for the day. As I was getting dressed, I pointed out a pair of pajama bottoms that were in the laundry basket. I asked him to wash them if I had to stay overnight in the hospital while I was given IV fluids since I was getting so dehydrated. As I was leaving the house I told my chihuahuas that I would be home right away. I walked outside and my one eye became blurry. 

We arrived at the emergency room and I thought I would be taken to a room right away since during my hospital tour they kept mentioning H1N1 and the heavy caution being used for pregnant women. Well we waited and waited. The admitting staff seemed unconcerned when I told them that I was 23 weeks pregnant, had been ill with a stomach virus, had dark urine, and had previously had pain in my upper right rib the previous day. They casually mentioned that I may be preeclamptic when my bp was 200/115 and getting higher! Having done a lot of pregnancy reading and research I looked at my husband with intense fear. This could not be happening after all I am only 23 weeks pregnant. I am a vegetarian. I am an organic farmer. I am a healthy person. I love being pregnant and love my baby even more. We are good people.

My nurse asked for a urine sample. When I opened the door from the bathroom I looked at my DH (the man that I started dating in high school almost 17 years ago, the man that loves me so much and had been waiting for the arrival of our little one since the day I told him I was pregnant with so much joy) with fright in my eyes. My urine was darker than ever- almost brown. I kept telling the nurses that I was really dehydrated and needed fluids. Sure enough I was given IV fluids and also violently given a catheter. I was sent down for an u/s where I was able to see my precious baby. Her heartbeat was strong as always and I was able to breathe easier. I was wheeled back to my DH. Blood work was constantly being done. A doctor came in to make sure that admitting didn't make a mistake- "You aren't 23 weeks pregnant right? It must be 32 weeks." I confirmed that I was 23 weeks pregnant. Nurses kept coming in and out with paperwork for the doctor. She looked at me and my DH and said that I was going to have to be transferred to a hospital that had a level 3 NICU and that I was going to have to deliver my baby immediately. My OB walked in and started rubbing my shoulder and telling me that now is the time to be selfish and that I could always have more children. Wait a minute... WHAT?! Well... it seems that although I never showed any signs of preeclampsia or HELLP at my appointments it seems as though I was suffering from both at extremely severe levels. My platelets were around 50, my liver was failing, and my kidneys were shutting down. My OB was shocked that I looked so good. I had no swelling and I was just starting to look pregnant according to my DH. My OB told my DH that as sick as I was I looked so healthy. Another violent catheter insertion was given (about 5 minutes after my first was removed). I screamed with intense pain like I have never screamed before. I cried uncontrollably while the nurses told me that one day my daughter would be driving me crazy and all of this would seem like nothing. I hoped so. I hoped that I would have the opportunity to complain that my first born was driving me crazy! The nurse gave me a steroid injection to help develop the baby's lungs. There are supposed to be 2 given in a 48- hour period. I was only able to receive the first injection. I was transferred by ambulance on a pothole laden highway that made my catheter hurt me even more but all I could think about was my baby. Of course now my bp was crazy- I was petrified! The L&D staff knew we were on our way and my perinatologist that had given me my Level II u/s a month ago would be there waiting for us to arrive. 

About 25 people crowded my room poking and prodding me. I was instantly signing paperwork as I listened to my baby's strong heartbeat. My platelets (after a 20 minute ambulance trip) were down to 40. They said I was at risk for seizures and strokes. I was close to dying. I was wheeled into the OR as I kissed my DH and my mom. I kept thinking my baby has to be okay. I love her so much- she has been my passenger all this time. My DH watched the surgery through a small space in the paper blocked window. I was completely out for the C-section. He saw our little girl being pulled out of my belly. He heard the doctor tell a resident that he was the baby catcher. He heard them yell out 3:24. He was able to walk down to the NICU with our daughter who was given a little blue and white hat to wear as her isolette bounced over bumps in the hallways. My Junebug was born February 4, 2010. No one other than the NICU staff congratulated us on her arrival. 

We received only "Get Well" cards and loved ones telling us how sorry they were for us. But the truth is, we weren't sorry that our DD was here. We felt blessed that our perfect little girl was born healthy and strong. She was simply displaced. My DH likened this to an adult being sent to the moon and told to survive on their own. She was not sick just truly displaced. Eventually we received one flower arrangement and an edible arrangement with congratulations. A great friend, after a phone conversation, ordered the cutest blankets for her to use in her isolette. Another friend made a sign with our DD's name on it for the NICU and sent food for us along with her DD's blankets. We held on to these few gifts of congratulations with everything we had because after all now we were parents! 

I do not remember much about waking up. My DH says I asked only about the baby. I know family members were in my room but I barely remember anything. What I do remember was everyone telling me how swollen I was. Apparently my edema waited until after my C-section and was severe. Days later I would question whose legs I was looking at as my normally small legs looked completely unrecognizable. I also remember a neonatologist talking with us about our DD. He said that if the baby wanted to live it was up to her and that the first 24 hours were the most critical. A NICU nurse brought me pictures of my 12 ounce 9 inch long baby. They asked me what I wanted to name her. I was afraid to name her. I was afraid that once I named her that I would lose her. We were told that at 23 weeks the chances of survival are not quite known but at 24 weeks they are 50%. Why couldn't the doctors have waited one more week. Why couldn't my body have done it's job for one more week. 

Around midnight I was wheeled down to see my daughter. I wasn't strong enough to get out of my wheelchair so all I could see was her elbow moving around. My DH had already told me that she kept kicking her legs and waving her hands. This seemed right. The whole time that I was pregnant she was incredibly active. She was difficult to photograph during my ultrasounds. She would dance to the Black-Eyed Peas- actually dance during the u/s. She would pull her leg behind her head during the u/s as if she was doing yoga! So much so that I already had a shirt for her that says "Yoga Girl". The next day I looked at the picture of her and told my husband that I think she looked like a Corinne. We had a list of several names that we loved. Out of all of those names she really looked like a Corinne. I never understood when mamas would say that they knew that their baby looked like a certain name, but now I understood. We named her Corinne Ellery. 

She grew stronger and stronger each day. The NICU nurses made us imprints of her hands and feet since we could not have ink prints. At 23 weeks a baby's skin is translucent and very fragile. Her skin would bleed just from her rubbing her foot on her leg. Eventually her other layers of skin started coming in and her wounds started to heal. They placed my husband's wedding ring on her leg to show how itty bitty she was. That has become one of our favorite photos of her. The nurses would tell us that they have never been so exhausted as they have been since caring for Corinne. She would rip off the saran wrap that was supposed to help keep her warm or she would kick it off of her little body. She would pull on her wires with her toes. She would try to pull her breathing tube out of her way because she wanted to suck on her thumb! She was, by far, the toughest little girl that her NICU had ever seen preemie or not and that made us even more proud of her! I was able to put my hand in her isolette during which she grabbed my finger and held on for over 20 minutes, my DH reached in to touch her foot and she kicked him out (I guess it was mommy and Corinne time), take her temperature under her arm two times, able to assist one of her NICU nurses with changing her blanket, and was able to recreate the womb by placing my hands near her head and feet which gives preemies the boundaries that they have when still in the womb. I loved each of these moments with my whole heart for they are all I have.

I wasn't concerned about my healing or my health. Eventually I would be taken off of the magnesium (to prevent seizures). My bp was uncontrollable. Now both of my eyes were blurry (it turns out that the pit edema was responsible for swelling my retinas).  I learned that I had hemorrhaging during the delivery and received blood and platelet transfusions. I learned that I was extremely sick and that everyone in L&D was talking about me and my "23- weeker". Eventually my catheter was removed (thank God) and after hours upon hours I was able to urinate on my own just as my nurse was about to give me another catheter. (I guess that's what I needed to hear to be able to go to the bathroom) My incisions didn't hurt as much as I had thought they would. The gas pains were worse. Nothing was as bad as the worry that I had for my little one. Corinne was all I thought of. At first I was only able to go to the NICU once a day but I would send my DH to visit throughout the day to tell her that I love her. By the time I would get enough energy to get into the wheelchair and have a break in time from my medical needs it would be the end of the day. Often my bp was being taken every 5 minutes every hour. But my little Corinne was doing great!!!

Everyday when I would visit with Corinne I would stay strong for her. My mom would sob constantly in the NICU and my husband would try to be strong and then just melt. I told them that there was no reason to be sad now because she was a tough little cookie :) I figured that just as Corinne's numbers would get better when I would talk to her she would be able to pick up on my emotions and I did not want her to think I didn't believe in her. I would tell her how my breast pumping was going and how proud she would be of me. I was going to make sure that the NICU freezer was full for her because I knew she was going to need all the breast milk possible. I would tell her how proud I was of her and all of her accomplishments. If there was a procedure or a test that needed to be done I would tell her that I thought she did great- because she did. My visits were increasing as was my strength. We were told that there would be good days and there would be bad days, there would be ups and downs, and that we were on the NICU roller coaster. Her down sides were small- the bilirubin light would sometimes be needed after being unnecessary (for jaundice), she would need epinephrine after not needing it. I felt blessed. Some things that the doctors and nurses would tell us seemed horrifying but the cure was something easy like aspirin. Much of what they have to do for preemies has a negative effect. They give preemies steroids which effects their sugar so then the baby needs insulin. Most upsetting is that the ventilator that is saving the baby's life is also damaging their lungs. The doctors started being hopeful that Corinne Ellery would be a record breaker for their hospital! I was discharged but because of her size she was deemed the most critical baby in the NICU so we were given the key to the NICU parent room. A key that although I did not want to use was the key to keeping me right down the hallway from my baby not 45 minutes away like our house. This meant that we were able to spend all of our time with our DD- more time than when I was still a patient. I was planning on settling into this room until June or whenever she would be discharged. I was not giving up on my little girl! The NICU staff and the head of the hospital told us that they had never seen two parents so dedicated and devoted to their child. We spent as much time as we were allowed to next to her isolette. I talked to her constantly, we sang to her, we read books to her that we had been reading to her while I was still pregnant. I would ask her to show me her foot and she would. On her one week birthday her fused eyes opened (right on time)! We watched her ears form from little puffs into wrinkled ear-like shapes and then into the most perfect ears I have ever seen. She gained weight- now weighing 1.1 pounds. A proud mama and daddy for sure :)

On February 15, 2010 we were told to come to Corinne's bedside- there was an emergency. Would we want them to try to resuscitate? We said yes, of course. I was allowed to touch her and she squeezed my finger with all of her might. I knew this meant that she was still fighting and would be okay. It turned out that she had a lung collapse. We sat in chairs with arms wrapped around each other saying "Come on, Corinne!" The doctor was able to fix this with a needle. Corinne came back stronger. My DH and I walked over to her bedside- she immediately opened her eyes looked right at us and waved her teeny hand as if to say, "Hi mama and daddy, don't worry I'm okay!". The doctor could not believe her strength and her fighting nature. All throughout my pregnancy I told people that the baby was stubborn just like me so this was no surprise. I believed that Corinne could overcome anything that came across her path even more now. The doctors reminded us that there could be complications for her in the future. Complications ranging from blindness or deafness to having cerebral palsy to being bed-ridden. I didn't care because she's my baby and all that mattered was that there was a future! I explained that she is our only child so she has all of our attention and her needs, whatever they may be if any at all, would be attended to. They asked us what would we want to do if she needed to be resuscitated again. My DH and I agreed that as long as she was responsive to their treatments we would proceed.

Corinne's doctors and nurses continued to monitor her closely and were trying to figure out what would be the best options for her tiny body to have the overall best outcome. We continued to take pictures of our little beauty and tell her how amazing she is and how proud we are of her. The NICU staff decided to switch her from an oscillating ventilator to what I called the "big girl machine" as the oscillating ventilator wasn't working as effectively as they would have liked (although it is more gentle on a baby's lungs). She would end up being moved back to the oscillating machine as she was showing signs of great improvement. As time went on and her numbers were lower than preferred she was moved back onto the traditional ventilator. Her doctor told us that he no longer knew how to help her lungs. We were given three options. To transfer her to a larger children's hospital, to try nitrous oxide (NO2), or to try another dosage of surfactant. Trying the NO2 or surfactant had many unknowns, however the other hospital does not resuscitate so we felt our options were down to two. We decided to try the NO2. We prepared ourselves that this might not help her and could in fact hurt her because of the unknowns. I wore a shirt that I think she liked and so did my DH. We sat with her as this attempt to make her lungs work better was made. The respiratory therapist told us that it normally takes about 3 hours to see a reaction to the NO2. I settled in on my normal chair next to my baby and my DH stood strong behind me with his hand on my back. Our girl did great! She responded better than anyone expected in a lot less time- such a fighter! Truly an amazing day for all of us. I felt so comforted that day that I actually went to my room for a few hours with my mom to take a nap as I wasn't feeling well. My DH stayed with Corinne and read her one of her books about daddies :) Later on that day I went back to her bedside as usual in just awe at how lucky I was to have such a strong and fiesty little girl. I was enjoying every moment as a mommy to this amazing little girl. I couldn't wait to see all of her accomplishments in life and see who she would become. We were thankful that this had turned out to be a great day. We stayed with her just watching her and talking to her until about 2:00 am.

At about 4:00 am on February 18, 2010 there was a knock on our door- we were needed at her bedside. For some reason I was not worried. I felt that no matter what Corinne would again surprise the doctors with her strength. My DH and I walked into the NICU and went back to our chairs as they were trying to get her numbers back up. This time her numbers were not getting much better. I asked if I could go over to her. I thought as soon as I went over to her and she heard my voice that she would start doing better. I told her how much I loved her and how proud I was of all of her accomplishments. There was no change. I asked if I could touch her. I put my hand near hers and she just rested her hand on top of my finger and opened her eyes as she looked into my eyes. She could not squeeze my finger. How could this be?! All along they wanted her oxygen saturation to be in the 90's it went down to 3. I looked at my DH and told him that she could not squeeze my finger like last time. We knew that our little one could no longer fight. The doctors told us that the pH of her blood gasses had dropped to about 6.8 which we had been told days earlier could make her heart irreversibly stop. When she received the NO2 previously her pH went close to the ideal 7.3 with a 7.2. 

That was the day that my DH, my mom, and I were able to cradle Corinne Ellery in our loving arms. Our girl was a big girl now- 2 weeks old to the day. My sweet little girl passed away in my arms about 25 minutes after she was taken off of her machines. We were in our NICU parent room. As time with her in my arms progressed she had a smile on her face and had a glow about her. Corinne made me a mommy and made my husband a daddy. Nothing will ever change that or our love for her. Not everyone understands that- even after the beautiful memorial service we held for her. I was told by loved ones that I shouldn't give up and should have more babies and that next time maybe I should try harder... That does not matter all that matters is Corinne. I promised Corinne on her angel day that I would make her a big sister one day. I tried to donate my breast milk but am unable to because of receiving transfusions. I was sad about that at first because it was a way to keep Corinne alive but I do feel as though my milk was just for her now. Somehow I feel peace in that since she was never able to have my milk. We will keep Corinne alive with memories (although few), photos, and a soon to be formed memorial fund. That is all I can do for her . My DH has started donating blood and platelets. She and I took so much from the blood bank we know we need to replenish it and find peace in doing so. We are having a truly difficult time without her and miss her more and more each day. I hope that friends and family members of ours remember Corinne always and kiss their babies everyday one extra time for her. I hear people complain about their children and I tell my DH how I wish that I had crayon marks on the walls, diapers to change, slaps at my face, anything to treasure even if undesirable. All of those everyday little moments that we all would normally take for granted are the little things I yearn for.

I do wonder what Corinne would grow up to be, what her favorite cartoon would be, whether or not we would be best friends, etc all the time. What I do know is that my little girl will always be the strongest little girl I have ever seen and a true inspiration to so many people in the NICU not to mention a true inspiration to her mama and daddy. I love you Corinne Ellery always! 

Tami blogs at www.oursweetcorinneellery.blogspot.com