Monday, July 13, 2015

July 13 - Dear Nicholas Sparks (Guest Blogger Anne-Marie Huffman)

Dear Mr. Sparks,

We have two beautiful boys, Benjamin and Jonathan. We learned that we were expecting when Jonathan was 8 months old. We learned at 20 weeks gestation that we were having a girl who had a Congenital Diaphragmatic Hernia (CDH). This came as quite a blow, especially after our son Jonathan had just been diagnosed and had surgery for neuroblastoma (cancer) just 3 weeks earlier. We were numb. We had an amniocentisis to check for genetic abnormalities, since her ultrasound showed a growth on her forehead. After a VERY LONG 10 days we found she was genetically normal. We had a visit to the Indiana University Medical Center and Riley Hospital for Children scheduled for us for February 15, when our son Jonathan was due to have his next CT scan.

The fifteenth was an overwhelming day, ending in a fetal MRI for mom, an ultrasound with the perinatologist and cardiologist, a meeting with Dr. Trautman (in neonatology) and a meeting with Dr. Deborah Billmire, who was to be Elizabeth's surgeon. We left completely exhausted, but very confident in Elizabeth's future doctors. Every question we had was answered in full (of course we always heard, "You never know until the baby's born").

We arrived back at IU to be induced on Monday, March 25, 2002. I was 38 weeks along. I received a pill to prepare my cervix, since I had not started to dilate. Labor began after about 6 hours, and that night I had some Nubane to allow me to rest a while. I woke up around 6:00 and knew I was in transition. There had been trouble finding Elizabeth's heartbeat all night, so I requested that they check her position now, since I was very near delivery. I had a great deal of fluid, due to the CDH, and Elizabeth had turned again to a breech position. I felt the urge to push and summoned the doctor. I ended up with general anesthesia. Elizabeth's feet were already in the cervix. She was born via c-section at 7:28 a.m. My husband, Steve followed Elizabeth as they tried to stabilize her at IU. They transported her to Riley through the tunnel where she arrived at 9:30 a.m. I was waking up in my room with Steve when Dr. Billmire called. She said Elizabeth's oxygen level was at 50% and asked if we wanted her to go on ECMO (Extra Corporeal Membrane Oxygenation). There was no alternative but death, so we agreed.

After the surgery to put Elizabeth on ECMO, I was able to see her. I had a LONG wheelchair ride through the tunnel to the NICU at Riley. Elizabeth was so beautiful. The growth on her forehead was just a hemangioma (birthmark that fades over time). We could not hold her or stimulate her much, due to the ECMO cannulas in her neck.

Six days later, Elizabeth would have surgery while on ECMO. She was not able to progress any further without it and needed more lung power. Her liver, intestines, spleen, and stomach were in her chest cavity and were keeping whatever left lung was there from expanding. We prayed there would be some lung on her left side to assist her larger, but smaller-than-normal right lung. The surgery went very well. Dr. Billmire went over what happened and that even though it went well, we still did not have enough evidence to show whether she could survive. Her lungs expanded and each day we checked her X-rays and blood gases to find evidence of progress. She soon seemed ready to be taken off of ECMO. After several days of weaning (up and down on the ECMO support level), she seemed to be doing very well at a low level.

On Friday, April 5, she was removed from ECMO. She seemed to be doing well at first, but that night was AWFUL. She seemed to have developed pulmonary hypertension. The cardiologist was summoned in at 10:30 p.m. to do an echocardiogram. I listened to a very sobering description of the implications of this problem. Basically, it was not easy to resolve in any short amount of time. I went back to our hotel to get some rest. At 1:30, Dr. Evan Kokoska called me and said that my daughter was doing very poorly. I asked how long she would last, and he said it could be several hours. I said a prayer for strength to accept God's will for us and left for Riley.

When I arrived, a very tired Dr. Kokoska and her nurse Mary Lynn, had done all they could think of. I sat down with Elizabeth and prayed and talked to her. About 20 minutes later, little drops of urine started dripping from her Foley, signaling that kidney function was resuming. Praise God! Elizabeth made a comeback and continued to progress all through the weekend. It was Sunday before I began to progress from the shock.

The week went well to begin with. Her paralysis was stopped Tuesday, and she started producing stools. She was allowed her first tube-feeding Wednesday night. I came back to the hospital, excited to see how it went. While she was keeping the milk down, her oxygen and blood pressure were not as steady. I went home and was in contact with Kelly, her nurse, every few hours. She called at 6:15 a.m. and said that Elizabeth was back on the oscillating ventilator. I knew that wasn't good. I got to the hospital at 8:00 and waited there all day as her doctors tried many things to get her oxygen levels to improve. They were around 80 most of the day, but dipped into the 70’s and even 60’s at some times. I called my husband to start driving from Mishawaka. I knew from her experience Friday, that they had done everything they could think of, and she was still not improving. At 5:00 p.m. when Steve arrived, we talked to Dr. Billmire about her condition. She would probably not survive the night. We were so thankful to Dr. Billmire throughout this that she was always calm and honest, not giving us false hope or telling us what we wanted to hear. We sought her out whenever we wanted to REALLY know how Elizabeth was doing.

We brought our sons back to the hospital to see their little sister for the first and last time (it was RSV season and they were not allowed in prior to this). Everyone was very understanding and helpful. The nurse put curtains up around our bed so we could have privacy, and at 9:00 p.m. we asked to be able to hold her. She was still on her oscillator and all of the wires and tubes, so this was a feat. I held my Elizabeth Joy for the first time. She was so light. After four hours, Steve took a turn. I sat with them and watched her color fade and knew she was slipping away.

We had the most wonderful nurse in the world, Cheryl, who, with a cheerful face, helped us accomplish all of our firsts with Elizabeth as the happy, bittersweet moments that they were. She and another sweet nurse helped us make a hand cast of her beautiful little hand, and brought us drinks and food as necessary. I took Elizabeth back from Steve, and we talked with Dr. Torrine (her neonatologist) about what to do next. This woman was amazing. Pregnant herself, she was there all night and helped us say goodbye to our sweet Elizabeth with compassion and skill.

I knew that Elizabeth was not really with us anymore, but her heart was still beating. First, we turned off the dopamine and dobutamine, which didn't do much. The oscillating ventilator was keeping her heart beating, although her little body could not be surviving at her oxygen level (30 at this point). I held her and helped remove the ventilator. This was the first time I'd seen her without her vent taped to her face. She was so beautiful, with sweet little lips and a tiny, perfect nose. I held her close and sang her a special song that I’d sung to all my children as I rocked them to sleep. Dr. Torrine came to check her about 20 minutes later, and she had gone. I had to say goodbye to my little girl, who I'd only given birth to 17 days earlier. We have no regrets and cherish those days more than anything on earth.

Our little treasure, Elizabeth, is in heaven, but we have a great treasure in the incredible friends in Christ we have here. There will be a day when I go to meet Elizabeth. I long for it. Yet I know that I have two little boys who need a mom to help them accomplish what God has planned for them. In heaven, we'll be a family of five once again.

Elizabeth's mom, Anne-Marie Huffman (Indiana)

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