Tuesday, June 8, 2010

Olivia's Story

I've been wanting to tell you about Olivia for quite a while now. I just haven't found the strength. It's still hard. I miss my little girl so very much. I miss her just like I miss Grace but it's different. Olivia lived. She moved. She looked at me. I watched her grow if only for a little while. I didn't have a chance to do that with Grace and although I miss her and love her deeply, the bond with Olivia felt different.

Olivia came into this world 7 minutes after Betsy. I can't remember if I mentioned it or not but I had no epidural with Betsy and Olivia's delivery. We tried it twice but for some reason it didn't work. So I felt it all. Betsy was delivered fairly easily but Olivia wasn't ready. She was still very high and wasn't showing any signs of moving down. My doctor had to literally reach up to his elbows to pull her out. I'm only telling this because I think it's relevant to what went on with her tiny body. For 7 minutes my doctor pulled and tugged to try to deliver Olivia. Finally, she was born at 7:00 pm. She wasn't breathing and she wasn't moving. The waiting NICU team took her and began pumping on her teeny tiny chest. After a few minutes they were able to stabilize her. They briefly stopped before they left the room with her to let me see her. She was so tiny and I was so scared for her. She had the brighest blue eyes I had ever seen and it looked like she was looking right at me. I will never forget that moment that we shared. Olivia weighed 1 lb 14 oz and she was 14-1/2 inches long.

So because I had been on hospital bedrest for 2-1/2 weeks and literally had not been out of bed, I had absolutely NO strength whatsoever. It was amazing to me when I tried to stand up how it felt as though my legs were nothing more than mush. I literally could not move my legs. It wasn't until the next day that I had a tiny amount of strength and was able to transfer slowly to a wheelchair to go see my babies. I still could not stand.

The first time I saw Olivia I literally thought she was the most beautiful thing I had ever seen. I wasn't concerned about her size and I didn't feel afraid. I'm not sure why I didn't feel as though I should be concerned. She was such a fragile little body. Maybe I was just in shock. Confused maybe but I never felt afraid until she started getting sick. I just thought she was so pretty.

She was under the jaundice lights and she was having so much trouble breathing that she needed alot of support. Because her delivery was so rough she was bruised. Her torso and her tiny little legs were black and blue. I think this somewhat contributed to most, if not all, of her problems. I often wondered why my doctor didn't just leave Olivia in until she was ready. After all, after Grace was born Betsy and Olivia were left in. Now I know there would have been a huge risk for infection but also with two of my three babies delivered my uterus would have started to contract and go back to normal size with Olivia still inside. So now I understand the urgency to get her out.

Because she was certainly not stable enough for me to hold her, I cherished the moments where we got to do "containment". This is where I placed my hands around her to make her feel more contained, as though she was still in my womb. I loved touching her.

When Olivia was 11 days old she developed an infection that she had lots of trouble fighting off. We also found out she had a bowel perforation. They placed a tiny drain in her belly to drain stuff out and put her on antibiotics and medications for that. She was on continuous pain medication so we knew she was comfortable. We knew her infection was pretty bad as her platelets were low at only 14,000. They need to be over 100,000. This is the point she was also placed on the oscillator to help her breathing. The oscillator made her body very swollen and edematous. We were told this was not dangerous and they give her medication to make her pee to help the swelling go down. The next day we were told her condition was life-threatening. Her bowel perforation was not healing as it should.

Olivia started getting less and less responsive and more and more swollen. Her platelets were coming up, which was good and there was more drainage coming from her belly. She was still severely sick and things seemed as though they were getting more serious.

When Olivia was 27 weeks gestation, almost three weeks old, she had an issue with her IV lines being blocked because she was so swollen. They did a central line on her in hopes of her getting adequate medication. This is also the point where Olivia quit using the bathroom. Her infection was also not improving. We starting feeling as though this was the beginning of the end although no one really said it.

I felt as though our whole family was just a ball of nerves at this point. Everyday I would call my family after we left the hospital and give them the daily report. It hurt so bad to never, ever have good news to report on Olivia. Looking back I think we all knew things weren't going to be okay with her yet none of us wanted to believe it. Every single time we went to the hospital we were so afraid of what the doctors would tell us about Olivia or what we would find. I hated that it was such an anxious time for us and all I could do was cry sitting next to Olivia. I talked to her alot and I sang to her. I held her tiny hand and all I could do was cry.

Olivia's swelling got worse. The doctors would tell me every day that they were worried about Olivia. It was becoming too much for me to bear and there were days that I couldn't even think straight because I was such a wreck. To literally know my baby was slipping away daily was heartwrenching. Olivia developed a NEW infection. This was in her central line. Our problem was that her central line was her life-line. She was getting all medications through her central line so it certainly could not be removed; however, they could not start a new IV because she was so swollen. She wasn't using the bathroom quick enough to get the fluids off so we were basically at a standstill. We needed her to pee...and pee alot. My baby that should now weigh a little over 2 pounds was weighing almost 5 pounds due to swelling.

At almost four weeks old, Olivia develops an IV burn in her arm. I had been told these were rare but when they did happen they healed easily as long as you could get the IV out and in a new spot. Betsy actually got one on her foot but it healed fine. Because Olivia had such a bad infection, her burn was not healing and it was actually getting really, really dangerous. Her little arm and fingers began to turn black. My poor baby cannot catch a break. We were told that Olivia could not survive with this arm. She would need to lose the arm or we were going to lose her. We cried and we prayed and we didn't know what to do. We didn't even think she would be stable enough for surgery. We sat in a care conference with all the doctors and nurses and talked about our options for Olivia. They described to us the process of taking her off support and letting her go. All of a sudden, things took a dramatic turn. We knew things were getting bad but we didn't think it was THAT bad. I remember one of the nurses telling us we could hold Olivia (I still hadn't got to do that) and we could give her a bath until she passed. She said, "We don't know how long it will take for her to pass, but we know she will not feel any pain". I can't believe this. We are actually sitting around a room talking about my baby dying. We are going to have to make a decision to take her off support. This only happens in movies.

We go home and think about it. Tony and I discussed all our options and we talked with the doctors about if we did decide to amputate her arm what her chances of survival would be. She would still have a long road and still have lots to overcome but there was a slight chance she could pull out of this. We took that and ran. We decided to proceed with surgery and have Olivia's arm amputated. If she wasn't ready to give up, then we weren't going to give up on her.

On September 30, 2008, when Olivia was a little over a month old, I got to hold her for the very first time before she went to surgery. This was very special for me because we really didn't know if she was going to survive her transport over, much less the surgery itself. My baby was so swollen, so swollen that she was bright red and her skin was almost to the point of splitting. But she was still so beautiful to her momma.

Olivia came through surgery just fine, much to everyone's surprise. Her recovery was going to be tough but I just knew she was going to be fine. Now that the infectious arm was gone, I thought she had nowhere to go but up. It was a sigh of relief. Come on Olivia, let's get better!

Just 5 days later, at about 7pm on Friday October 3, we got a call from the nurse practicioner that Olivia's saturations kept dropping as well as her blood pressure. She told us that Olivia might be telling us she is ready. She told us to come quickly but be safe. I made all the appropriate calls to family as we hurried to be by her side. When we got to the hospital the top of Olivia's bed was open and her oscillator was up to 100%. Her saturations were low, at only 83, and weren't getting higher. I began to pray for peace for Olivia. I told her if she wanted to go play with Grace and Jesus that mommy would understand. I had fought this for so long and didn't want to believe it but I was to the point where I knew Olivia was ready and I needed to tell her it was okay to go. She was still hanging on. That night we spent the night in the NICU. The next morning there was no change in her condition. Tony and I decided that she needed to be in peace and we told the doctor we were ready to let her go.

I pray for anyone who ever has to make that decision. That was the absolute hardest thing for me to say and I hoped and prayed that Olivia understood why we did that for her. For the longest time I wondered if she thought we were mean or cruel for taking her off machines. My mind just can't grasp things and I go off into a world of regret. I knew in my heart that she couldn't go through this any longer and I wanted her hurt to end.

On Saturday, October 4, 2008, Olivia was placed into my arms. No tubes. No wires. Just her. We took her to a private room where she slipped away. I told her how much I loved her and I made sure to tell her how proud of her I was. I wanted her to know her momma loved her more than anything in the world for what she did and admired her for what she tried to do. I got to give her a bath. I had never in my life bathed a baby before. My first experience was with my baby who was no longer alive to even enjoy it. Her nurse gave me a lock of her hair and we even did fingerprints from her one tiny arm. She smelled just like a newborn baby. I dressed her in a preemie outfit which fit her just perfect and wrapped her in the same pink blanket she was wrapped in when I held her before her surgery. I held her for hours and hours. Still the most beautiful baby in the world.

Mommy and Daddy miss you more than you will ever know. You showed us such strength and bravery and you were always such a big girl for trying so hard. We will ALWAYS be proud of you and always admire you for being so strong. I think about you every single day and I can't wait to tell Betsy all about you one day. When you had surgery and lost your arm we used to laugh about how you would be such a cute little girl with only one arm and we hoped Betsy would never tease you! Now you are whole again. I am so happy that I knew you and I think your sister will be happy to know about you. I miss you. Thank you for being so brave. Thank you for keeping Grace company. I love you girls so much.


Helping All Little Ones said...

That was beautiful. Thank you for sharing Olivia's life with us.

Jessica said...

Beautiful post, I am glad you were able to share Olivia's story.

stacyar said...

Very beautiful story. You are such a strong woman. Tahnks for sharing her story with us.

stacyar said...

Very beautiful. You are such a strong woman. Thanks for sharing her story with us.