Tuesday, November 2, 2010

"This can't be happening to me..."

"Baby why'd you leave me
Why'd you have to go?
I was counting on forever, now I'll never know
I can't even breathe
It's like I'm looking from a distance
Standing in the background
Everybody's saying, she's not coming home now
This can't be happening to me
This is just a dream"
- Carrie Underwood

Everyone keeps asking "how are you?"... Dave and I are so grateful for all the support we have gotten from people- people we hardly even know. We couldn't get through this without every one's love. But how are we supposed to answer that question? Today at the cemetery I stood over Ellie's tiny grave site and it still doesn't feel real. How did this become my life? Why us? Why her? When am I going to wake up?
I can't even begin to describe the hurt. I literally hurt with every fiber of my being. At times the pain feels so heavy it feels like I have a boulder sitting on my chest. My limbs feel heavy and breathing requires more effort than I can summon. Other times I feel so empty. I imagine my body just disintegrating into nothing and being blown away by the wind. I've been told this is all normal. But there is NOTHING normal about this. There is nothing normal about your beautiful healthy baby girl getting sick and dying within 25 hours.

We know there are a lot of people out there that aren't sure what really happened. We don't mind people asking- of course its hard to talk about. For me, the writing and talking about all of this helps me start to make sense of it- if there is any sense to be made in the first place. Dave and I decided we want to share some details of that horrific day. We try hard not to think about this part of Elle's short life, but its there and its terrifying. So if you don't know to know... please stop here....

At 2am Sunday a loud thunderstorm woke us up. I went in to check on Ellie and she thought it was playtime. All smiles and squeals. When we sat down to rock, she felt warm. She wouldn't settle back to sleep so I took her temp (99.5), took off a layer of clothes, changed diaper and rocked her back to sleep. Within 15min she awoke again and Dave went to check on her. By then her fever was up to 104. She was whimpering, like most kids with a fever do. I figured she had an ear infection so I wasn't too worried. We gave her Tylenol, stripped her down to her diaper and called the pediatrician. While I was on the phone she threw up a small amount and started fussing. I held her and she settled back down. The RN on the phone said to just watch her. We held her throughout the night and her fever dropped to 101.
By morning she was starting to look a little pale and her fever was back up. Ellie was very drowsy and just wanted to be held. She was still waking up if we bugged her but I had a bad feeling. So we made an appt. with the doctor. She ate 5oz of formula and fell back asleep. Dave held her on his chest while I quickly showered. She barely moved. I sat down on the couch to hold her while Dave showered. That's when it all started to happen.
When Dave handed her to me, I saw that her chest remained white instead of pinking back up, her legs turned mottled before our eyes and she got cold, really cold. She opened her eyes, and threw up all over. She threw up hard and a lot. After that her eyes sort of rolled back and we couldn't really get her to respond to us. We called 911 and our parents to come stay with Max. While we waited for the ambulance Ellie became progressively unresponsive. As a nurse, it was obvious to me that she was in septic shock (infection had taken over). When the fireman arrived, Dave, my mom and I were all shouting at Ellie and bouncing her and rubbing her sternum to try and keep her with us. The fireman applied some oxygen and that seemed to help a little. The paramedics arrived and pretty quickly determined she needed to go to the hospital. As we were getting ready to leave she threw up all over one more time. I carried her out of her home for the last time into the cold morning wearing only a diaper and covered in puke.
On the way to the hospital, they kept the oxygen on her, hooked her up the heart monitor and tried to hook her up to the pulse ox (tells the amount of oxygen in your blood- should be close to 100%). He wasn't able to get a reading because her circulation was too compromised. I noticed a small red spot on her scalp that I hadn't seen before. He wasn't able to get an IV started either. We knew she needed fluids and he almost had to start an IV that goes into the bone. But Ellie held strong in the ambulance and would occasionally look at me.
When we arrived at Children's St Paul, an entire code team was waiting for us. Thankfully, the ER nurse got an IV started, she had many blood tests done, urine and a spinal tap. Her breathing was fast and sounded like grunting. Her heart rate was in the 200's. They still weren't able to get a good read of her oxygen level. They immediately gave her fluids and a large dose of antibiotics. At this point the doctors weren't sure what was wrong. The red spot I noticed in the ambulance was getting larger, darker and she had petechiae (small pinpoint bruises) around her neck. They were unsure what to make of those at that point. They didn't think she had meningitis, a kidney infection, RSV or the flu. They just didn't know.
After the extra fluids, Ellie started to perk up and get a little feisty- the best sign ever! She looked right at me, grabbed her nuk out of my hand, sucked on it under oxygen mask, grabbed her blankie and rolled over on her side to try and get comfy. She started batting at the nurses for messing with her and was holding her arms up Dave and I. I totally thought things were going to be ok then. I wish I could go back to that- that was the last time she was really coherent.
The ER dr. decided to send us up to the PICU for observation and wait for test results- just as a precaution. They got her settled and somewhere along they way things started to get worse again. I noticed the petechaie was now spreading all over her body, that red dot was turning purple, she wouldn't look at us, her breathing was labored and her heart rate was getting more rapid. She was getting colder. She was so cold. The intensivist told us they wanted to intubate (place a breathing tube) her and place a central line (an IV into a large vein) as a precaution. If it was meningitis, we had to stay ahead of it. I said I wanted to hold her first.
They placed her on my chest while they brought in the ventilator and prepared for the procedures. Ellie was slightly fussy but calmed while I was holding her. Dave rubbed her head and back and we both told her how much we loved her and how brave she needed to be. My mind was screaming not to let her go but I knew I needed to let them help her. We kissed her one more time and were told to go wait.
We waited and waited. By ourselves. Just sitting and waiting. After an hour, the Dr told us they had the breathing tube placed and would come get us after the IV was placed. An hour later, he came in and said everything went well. We could see our girl. There aren't even words for what we felt walking into that room. It was hard to walk in there and see our baby, so tiny, so vulnerable, hooked up to all that.
I have always loved being a nurse, but I would have given anything to not know what I knew that day. The doctor didn't lie when he said things went well- the tube was placed and the central line was in. But he didn't give us the whole truth. I walked in and saw my baby hooked up to dopamine, norepinephrine, epinephrine (blood pressure support meds). I heard the nurse saying he needed to go up on these drugs, she needed more. I heard them asking for more blood products. I heard the blood bank saying they couldn't keep up. I'm not sure how long we were in the room while they worked on her. No one was talking to us- I just knew because I spoke nurse.
The nurse and I stepped out to get a drink and I started crying. She put her arms around me, started crying and said "its not good." Her pH is 6.9, her lactic acid is going up (all signs that the body is shutting down), we can't get her blood pressure up- it was 53/27. She asked if she could call the chaplain, she said we should call our families. I just kept thinking this can't be happening. I wanted to wake up. I had to tell Dave how sick his baby was.
When Dave stepped out to call our families, the intensivist came in and sat down next to me. He put his hand on my knee and said, "we are trying. we are trying so hard. we don't have much else we can try. we have thrown everything at her but the kitchen sink. she probably isn't going to make it. the only chance she has is to be put on ECMO at Minneapolis. if she makes the trip there, its her only shot." I went to the sink and threw up. I sat down next to my little girl while the doctors and nurses worked all around her and noticed her ears were turning black. She was so puffy. She was oozing around her IV lines- all five of them. I knew was she was starting to enter DIC- a bad sign- its when your body loses all its clotting factors. I closed my eyes, held her hand and sang to her. I couldn't tell Dave- the nurse had to. How do you tell your husband his baby is probably going to die?
After several hours, they were ready to move her to Minneapolis for ecmo. ECMO is basically a heart/lung bypass machine. It takes all the blood out of the body, takes the bad stuff out, puts oxygen in and puts it back in the body. This all happens through large tubes inserted in the neck. We gave our peanut a kiss and told her a million times we loved her and to hold on- that we needed her. They wheeled her away and we were left standing in a bloody, messy hospital room. We followed the ambulance to Children's Minneapolis. When we met her up in the PICU we couldn't go into the room. There were at least 15 people working on her. They put us in the room next door and we were able to see her through a window. Our moms came back with us. The doctors came in and asked us to sign consents. He said her chance of survival without the ECMO was zero. With the ECMO, they still weren't very high. She would surely be left with kidney and brain damage if she survived. The nurse in me said, no one can survive this. The mom in me said, how could I lose her? she will be fine? We signed the consents and were able to see her. We kissed her face, her hands, smelled her sweet smell and stroked her fuzzy head. I sang her her favorite song, like I had been doing all morning. Then they told us to wait.
We waited for almost four hours. Occasionally we would get the "everything is going ok" update. Nothing more reassuring or telling than that. Finally, we could see her. Nothing they could have said to us would have prepared us to see Ellie like that. I still have a hard time believing it was her. I swear someone took our baby, our Ellie, and replaced her with a black two year old. Dave couldn't even be in there. Her skin was black/ purple, her fingers grey, she was so swollen we couldn't even bend her fingers. Her cold skin felt like rubber. She had so many tubes and wires that it was hard to find a place to touch or even get close to her.
Throughout the evening they worked SO hard to help her. But they couldn't ever get her stable. Her heart rate kept going up, her blood pressure down and they started grasping for straws. We stood by her bed while the doctor told us they could try one more thing. They were going to put a line in her groin to try and get more blood out of her so they could get the oxygen in. When we signed consents, the surgeon said her leg would be a little swollen permanently IF she survived. We kissed her, we told her to keep being tough, we wanted to stay so bad- I couldn't bear to think of her alone.
They put us in a room down the hall. We fell asleep for about 15min. When I woke up, I knew. I knew she  wasn't going to survive. Dave woke up then too. He says he knew then too. I think that's when she left. I think she came to visit us on her way to heaven and woke us with a kiss.
A woman came to get us and she said the doctors want to talk to you. They didn't bring us to Ellie's room. They put us in an empty family lounge. We waited. We waited for what seemed like forever. They came in and said they did what they needed to but it wasn't enough. She wouldn't survive. He said they had resuscitated her several times with fluids and meds. He asked if we wanted CPR. He said call your families now. Have them come now to say good-bye. He said she didn't have more than a couple hours and it might even be less than 10 minutes. I said I wanted to hold her.
We went to her room and they started arranging things so I could hold her. She was so large, heavy, cold. They unhooked her from the vent since the ECMO was doing the work. Her chest wasn't moving. Dave and I held her the best we would but there were so many tubes and she was so swollen. We kissed her, told her how amazing she was, how much we loved, how sorry we were. We sang to her. Eventually our families arrived and they were able to say goodbye. 
Her body was so swollen with fluid it was oozing from everywhere. I kept wiping tears away from her little face.We knew it was time. The chaplain said a prayer and the nurses turned off her machines. Her heart stopped within minutes. 
They still aren't sure what made our baby so sick. They think it was a common bug that her body reacted to badly. The doctor said, "its bad luck." Bad luck?! Bad luck?!
We took our time holding her and then gave her a bath. We did her footprints, cut a piece of her hair- how we loved that hair on her fuzzy head, and wrapped her in a blanket from home. We left that night without our girl. Within 25 hours our lives were shattered. It doesn't make sense. I want her back. I want her back so bad. I can't breathe without her.

4 comments:

Peter and Alison plus 3 said...

Tiffany,
Your blog was forwarded to me by a friend, and your daughter has touched me so deeply, that I had to send you a note of love. There are no words to convey the sadness in my heart.
Please know you, your husband and your son will be faithfully prayed for; even by those who you don't know personally!
Alison

The Graifs said...

Tiffany,

My husband and I have been following your updates since your terrible loss. I am so sorry for you and your family, what a beautiful baby girl! We will continue to pray for you and your boys to find comfort.

Thinking of you,

Shannon and Andrew Graif

Annie said...

Tiffany-

You don't know me. I went to school with Dave. I have been following your blog since you began posting. My heart breaks for you and I cry buckets of tears for a mom I've never met each time I read it, but I know it's not even a fraction of the tears you have shed and the heart ache that you have and will always carry with you. It must have taken so much for you to write this. I think of you guys and pray for you daily. Multiple times a day actually. Ellie is so so incredibly beautiful and such a blessing and I want to thank you for sharing her with us all. She has touched so many lives, changed the world in the short time that she was here, and taught me more in the last 10 days than I have learned my entire life...because of her I rock my little one a little longer each night and have more patience than ever before. I also want to tell you what a brave and amazing mother I think you are. God could not have chosen a more perfect mama to take care of Ellie, and no one in the world could have ever loved her more. I know that she will never stop watching over her parents and big brother, and heaven is so lucky to have her as their sweet angel. I will continue to pray that God will ease your pain somehow, someway.

-Annie Floyd

Green Olive said...

Tiffany-
You dont know me, but I was told about your blog. There aren't any words to ease your pain, no gestures to heal it, I can only offer my thoughts and prayers to you and your family.... My heart breaks and physically hurts for you- for your husband and your son. I have no words of advice, but please PLEASE know there are many people out there praying for you and thinking about you and your beautiful little girl.
All my love, prayers and thoughts are for you today and in the days to come...

Crista
(A Twin Cities Mama)

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