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!

Leah's Story

I had been anxiously awaiting the birth of our second baby girl, Leah Brook. I was so excited to have a baby again, to watch Taylor be a big sister, to figure out this new life of ours. But, God had other plans for us.

My water broke around 4:00am on January 7th. Yes, January 7th, the day of the National Championship game. Adam was in Orlando, on his way to Miami for the game. My doctor was on call and knew he was gone to the game. Her first words when she called me back were, "No way!". When I called Adam to let him know, he answered, "No way!". Thankfully they were still in Orlando and he was staying 2 minutes from the airport. He was able to get a flight and would be at the hospital by 11:00 am. Leah just had to hold off for a few hours. 

It was hard to know if my water broke because it didn't gush like it did with Taylor, it was just barely coming out. I laid in bed for about 30 minutes wondering if it had and timing contractions, praying I was wrong since Adam wasn't home. When I realized the contractions were consistent, I got up to check and sure enough, my water had broken. Mom was staying with me just in case this happened since Taylor came early too. I got her up and she got Taylor ready, while I put the last few things in the hospital bag. We dropped Taylor off at a friends' house and headed for the hospital. When I called the doctor, I was having minor contractions, nothing any worse than I'd had for the previous 3 weeks, but full blown contractions came on very quickly. Mom had to turn the hazard lights on and drive 90 mph. 

We got to the hospital and got hooked up pretty quickly. When they got the heart rate monitor on, Leah's heart rate was 190. I turned to Mom and said, "I'm probably going to have a C-section." They continued doing everything normally and eventually I got an epidural. When my doctor came into the room I told her Adam would be there by 11:00. She said we could definitely wait if Leah were doing okay, but her heart rate hadn't come down and was dropping every time I had a contraction. I also had a fever, which signaled an infection. She decided we had to get her out ASAP. They quickly got me ready for a C-section and told Mom they would come right back to get her so she could see her being delivered. They cut me open and got Leah out so quickly once we were in there, Mom didn't even make it in the room. She was born at 7:25 am. 

I remember hearing the doctor say, "We made the right decision, Bevin. She needed to come out." But nothing was registering with me. I didn't notice Mom's worried look, I didn't notice that Leah wasn't crying, I didn't notice anything. I think back now and wonder how I missed all of that. I think I was in a state of shock.

This is the only picture we have of her without tubes everywhere.
You can  look at her eyes and tell how sick she was, my poor baby. 

I asked Mom later why she didn't get more pictures of her. She told me that the nurses had to stop bagging Leah for her to take the picture. Like I said, I had no idea how sick she was until much, much later.

They brought Leah around for me to see her before they took her to the NICU. At that time, they told me she wasn't breathing effectively, but they were helping her and it was possible she would have to be put on a vent. I try to keep that picture of her looking at me in my head because she looked so sweet. I thought she looked so much like Taylor when she was first born. 

They took me back into recovery and told me I would get to see her in the NICU before going to my room. After about an hour or so, I finally got to go see her, and she was on a vent. I immediately started crying. At that time, I still don't think the doctor knew what was wrong with her, it would be several days later before we had any answers. 

Obviously, this is not the way a mom should be seeing her newborn.

 I only got to see her for a few minutes before they took me to my room and continued working on Leah. When Adam got there he came to my room and spent a few minutes with me, but I asked him to go check on Leah. I couldn't go back down to the NICU until I could get in a wheelchair and they wouldn't let me try until 8 hours after delivery. Everyone was trying to protect me and wouldn't tell me how bad she was. Finally, around 4:00, the NICU doctor came to talk to us. He told us that Leah was the sickest baby he had seen in a long time. She was septic and needed to go on ECMO. The only place they have ECMO is at Children's Hospital and he wasn't sure she would survive the transfer, but he had her as stable as he could and thought this was the best time.

They finally let me in a wheelchair to go see Leah until the transfer team got there. By that time, they had done many things to her and she had tubes everywhere. She was also on a high frequency vent and it was making her little body shake. We only got a few minutes with her before the transfer team got there. Then, it took them a long time to get her ready for transfer.

Unbelievable how much stuff she was hooked up to

I didn't process that Dr. Mena told us she might not survive the transfer. Everyone kept asking if she made it and I kept saying, Adam will text me when they get there, not even realizing the severity of what was going on. Leah made the transfer and made it through surgery. Adam said she immediately turned pink after the surgery.

ECMO

When that day started, I thought the worst thing we were going to have to deal with was Adam missing her birth. Little did I know how terrible that day would end up.

I hoped they would discharge me on Tuesday so I could go see her, but they made me stay for 48 hours of antibiotics since I had a fever and an infection. All I could get on Tuesday were updates and pictures from Adam. It was so hard sitting in a different hospital from Leah and not getting to be with her. The shock of Monday finally started wearing off and I cried almost non-stop for about 4 hours that morning.

All we knew on Tuesday was that she was swelling from fluid retention, but that was completely normal with ECMO. I think we all began to breathe a little bit easier since everything seemed to be going okay. Again, little did we know that Wednesday would start a whole new roller coaster, which will be in another post. 

God is blessing me

God is using many different ways to minister to me through this time--my husband, friends and family, books written by women that lost infants, worship songs, etc. One song that God put in my head in the days following Leah's death was "Even If". I listen to the Christian station on Sirius but never realized the words of some of the songs were sinking in. I kept saying the "You are God, You are good, Forever Faithful One, Even if the healing doesn't come" part over and over. I believe if I just keep repeating the things I know, they'll eventually become what I feel too.

Even If by Kutless

"Sometimes all we have to hold on to 
Is what we know is true of who You are 
So when the heartache hits like a hurricane 
That could never change who You are 
And we trust in who You are 

Even if the healing doesn't come 
And life falls apart 
And dreams are still undone 
You are God You are good 
Forever faithful One 
Even if the healing 
Even if the healing doesn't come 

Lord we know your ways are not our ways 
So we set our faith in who You are 
Even though You reign high above us 
You tenderly love us 
We know Your heart 
And we rest in who You are 

You're still the Great and Mighty One 
We trust You always 
You're working all things for our good 
We'll sing your praise 

You are God and we will bless You 
As the Good and Faithful One 
You are God and we will bless You 
Even if the healing doesn't come Even if the healing doesn't come"

Two songs we sang this past Sunday at church really helped me too. They were so hard to sing, but I did it. I want God to know I believe in Him and His faithfulness even if I don't feel it fully right now.

Faithful God by Travis Cottrell


"I see You turning ashes to beauty, bringing this dead man to life
Here You are in the midst of this sadness, wiping the tears from my eyes
I can hear, the song of redemption filling my heart with Your praise

Faithful God, You reign forever. 
We will hope in Your great name
Strong and Mighty King of Heaven.
We will worship You, Oh faithful God              

You see me as a child who’s forgiven, clothed in the mercy of Christ
Here I am, unashamed and surrendered. I have been bought with a price
Can you hear the sound of your people, shaking the earth with your praise?


Faithful God, You reign forever. 
We will hope in Your great name
Strong and Mighty King of Heaven.
We will worship You, Oh faithful God            


You turned my morning into dancing and celebration
You took my sadness and You gave me your joy
You broke the my bondage and You gave me my liberation
And I will ever praise You, And I will ever praise You, And I will ever praise You"


Blessed Be Your Name by Matt Redmon

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

Snow!

It snowed the day after Leah's funeral. God knew just what I needed to get out of the house and smile a little. How could I not smile when I look at this cute little girl He has blessed me with?! Taylor had so much fun making a snowman, throwing snowballs in the road and then at Daddy. She did not like it when he threw them at her though! 

Beginning of the snowman

Almost done!

Now he's perfect! Roll Tide!

Getting Daddy with some snowballs! 

Once we were done and COLD, we came inside to warm up and I got a manicure from my big girl!