Leah's Story Continued

My doctor discharged me on Wednesday morning so I could go on over to Children's to be with Leah, but I didn't get there until almost lunch time. The Director of ECMO, one of the surgeons, was in the next room, and came back by Leah's room to talk to me.

He told us that she had a brain bleed. At that time, it was between grades 2-3. Apparently, she had a brain bleed of grade 1 when they put her on ECMO, but they hadn't told us that. She had to go on ECMO, or she wouldn't have survived, but I still wish we had known earlier. They didn't tell Adam on Tuesday either, and I never did figure out why they waited until Wednesday before letting us know about the bleed. We immediately asked our prayer army (thanks to Facebook) to start praying for the bleed to stop.

Wednesday was really hard on me physically. I had to be wheeled wherever I needed to go, my feet and hands were swelling, and worst of all, I couldn't stand by her bed for very long without hurting. As I could, I read to her, sang to her, held her hand and kissed her head many, many times. The nurse even let me change her diaper a couple of times! It hurt me so much that I couldn't hold her though.

I ended up going home Wednesday night because I needed rest. I was physically and emotionally exhausted.

I was back at the hospital early on Thursday and waited for the head ultrasound to be completed. The ultrasound was done pretty early, around 8:30, but it took forever before a radiologist read it and the surgeon came to talk with us. The bleed had gotten worse and was grade 3+, but they said she could stay on ECMO. We needed more time for her lungs to heal! She was also still retaining fluid from ECMO and all the medicine and blood products she was getting, so we were praying for her start peeing a lot of that fluid off to help her lungs. Late Thursday afternoon she finally had a good, wet diaper! God was answering our prayers!

On Thursday, we also got a chance to talk with the infectious disease doctors, because until that point, we had no idea what caused all of this. So far, Leah's blood cultures hadn't grown anything (apparently the one round of antibiotics I got before delivery killed everything in her blood). The doctor mentioned in passing that her nasal swab tested positive for GBS, or Group B Strep. At that point I lost it! I knew I was positive for GBS and felt so guilty for missing something. I was already feeling guilty even though everyone had told me there was nothing I could've done, even the NICU doctor at Brookwood went out of his way to tell me there is nothing I could have or should have done differently. The doctor kept talking, but I don't remember much else of what she said. When she left, I turned to Adam crying and just kept saying, "I'm so sorry". Of course, he didn't blame me, but I blamed myself. Once I left to go share the news with family, the nurse followed me out and hugged me. She again told me that none of this was my fault and there wasn't anything I could've done to prevent this from happening. I'll post more about GBS later and all the research I've done on it since this happened. I don't want this happening to anyone else!

Thursday evening, Adam's parents brought Taylor to the hospital to meet her little sister. It was such a precious time. Taylor had been praying for her and the first thing she asked us was, "Where's Jesus?". Oh, to have the faith of a child!

Meeting baby sister

Sister love

Praying for Leah

That night I stayed at the hospital with Adam. We read a book to Leah, said our prayers with her, and sang a song, just like we do with Taylor every night.

Most of the rooms at Children's have couches or beds for the parents to sleep on, but the ECMO machines take up so much room, there isn't anywhere to sleep. I ended up sleeping on the couch in the consult room and Adam slept on the floor. In the middle of the night when I dropped off milk (she wasn't getting any, but I was prepared for when she did), the nurse asked if I wanted to bathe her in the morning. Of course I did! I went back to sleep some more, but set my alarm for 6:00AM. I woke Adam up and we went to give our little girl a bath. I will always treasure the time we did get to spend with her, the diapers I did get to change and the bath I got to give.

Later that morning, Leah got her daily head ultrasound. We waited and waited for the doctor to come by and give us the news. It was after 2:00 before he showed up. The bleed continued to get worse, but she could stay on ECMO for one more day. After Adam and I composed ourselves, we went in to tell the family. When we walked into the waiting room there were at least 18 people in there just for us! We were overwhelmed! As soon as we shared the news, someone started praying and praising God that we got one more day with our baby girl and one more day for her to heal.

By Friday morning, Leah had gained almost 3 pounds of fluid since she was born. Even though her diapers had started getting bigger, she still wasn't peeing out more than she was taking in.

See how big she got!

On Saturday, the ultrasound tech didn't come around until almost lunchtime! The anticipation was killing us! She finally came around, and then the doctor came by a couple of hours later. He told us her bleed had not gotten any bigger from the day before. He thought that meant it had crested and wouldn't get any bigger! We were so excited! Our pastor happened to be in the room with us and immediately grabbed us and praised God for our wonderful news. She continued having great diapers and had actually lost a few ounces from the day before. She also began taking some breaths between the vent breaths for her. The nurses told us that didn't mean a whole lot right now because she wasn't converting it to gas, but still, it was progress. These were all great signs!

Once we got the good news about her brain bleed, Adam and I decided to go home for the night and spend some time with Taylor. We had barely seen her all week. Before we left, Leah had actually wet through her diapers onto her blankets twice. I thought that was a good sign, but it wasn't. I wish the nurses had warned us because we would've never gone home that night.

My mom stayed with Leah overnight and kept us updated. By Sunday morning she had lost almost 2 pounds of fluid, and the nurses were concerned about her sodium. I kept asking what that meant, but they couldn't really explain it.

Again, it was later in the morning before the ultrasound tech came by. The doctors came by around lunchtime and explained the issues with her peeing so much. They said it could mean her bleed had gotten worse and affected the part of her brain that controlled her kidneys or it could be a hormone problem. While they were in there, the radiologist posted his review of her ultrasound, and it did show that her bleed had grown and was now in the solid part of her brain.

There was nothing else they could do. It was time to take her off ECMO.

They began trying her on lower flows of ECMO and higher vent settings to see if she could survive once they stopped ECMO, but as soon as they dropped the ECMO flow to 80%, her oxygen levels dropped too low. They pulled her flow back up quickly so she wasn't suffering.

We called friends and family that weren't at the hospital and had Taylor brought up there so we could all say goodbye.

Sunday, January 13, 2013 was the toughest day of my life. But, we had so many people praying for us that I was able to hold my daughter for the time we had left with her without sobbing with sorrow and grief. For that, I am grateful.

Children's Hospital has a great program and they provided us with a dress, blanket and bracelet to take pictures of her. Since we weren't expecting this, I didn't have any of Leah's stuff with me.

My two beautiful girls!

Family of 4

We love her so much!

Mommy's girl!

Sisterly love!