Sunday, September 15, 2013

What's happening?

No no no no...
What's going on? 

It's taken me a while to get to this particular post in my blog. I said a prayer that I could do it. I just hope, with out proof reading it, that it is okay and there aren't many mistakes.  I just can't re-read it now... maybe later... who knows. 
Again, I thank ALL of you who've followed this journey with us. Thanks for your love and support! 

(Side note: after looking through all my notes I found the nurses name that was on duty this night. Her name is Christine Hicks)

By now it's Sept 22nd sometime after 2 am. 
Christine kept coming back to check on Izzy, like she and all the nurses had done regularly. Only this time, I noticed it was a bit more frequent. I glanced at her monitor that we were shown, where it showed Izzy's heart rate and rhythm and to notice when the pacer was kicking in for Izzy. So you could see Izzy's heart rhythm and then different colored spikes (white spikes) where the pacer was working. Needless to say, I saw a LOT of white spikes. Just moments later, Christine came back from the desk and said she put in a call for the cardiologist to come take a look and adjust Izzy's pacer. I felt it.. felt that feeling of urgency, or something.. but I knew something wasn't right. So I began to "pack" away my things I had scattered about, why I did this I don't really know, but I just felt I needed to. I un-reclined my chair and sat in attention not sure of what to do. Looking up at the clock, seeing that it was nearly 2:30 and time for me to pump... I held off. There was no way I was leaving Izzy's side not even to pump! 

A female doctor,a blond, showed up and introduced herself. She explained, after she spent some time messing with and adjusting Izzy's pacer, that Isabelle was not adjusting the the different  settings very well and that the pacer was doing most of the work for her. She explained that she was going to keep working with it to see what she could do. There was a lot of bustling between her and the nurse, Christine.
It seemed like just moments later that doctor came back over to me and said this (which I will NEVER forget), "Basically, to be honest, what I am doing now, at this point, is preventing her [Izzy] from going into cardiac arrest." Then she said a few other things that I don't remember and was back to Izzy's side. Her eyes going from Izzy's monitor to her pacer and back and forth. 
I was in shock! 
I stood up, got my cell phone hoping to GOD I could get a signal inside these walls I felt suddenly suffocated by, to call Adam. I walked away from Izzy's area towards a little cove that was near a window and had just enough signal to make a phone call. 
I believe it was around 3 am now. 

Ring ... Ring ... Ring... "Hello?" Adam said in a groggy voice
I said something to the effect of:  You need to come back, now; something is wrong. 
Without question, Adam said "ok, I am on my way" and before he hung up I said to him, 
"... honey, you need to RUN back, don't walk!" 

(Much later, after talking with Tom, Adam did just that ... he RAN! Tom said he looked out the window and saw Adam running towards the hospital, so Tom knew something wasn't right.)

I walked back over to Izzy's area, now not wanting to go "in" to be next to her because there were so MANY people around her; I just walked past and into the hallway. Then I walked back into Izzy's area and just felt totally lost and unsure of what to do or where to stand. Next thing I know was there were 2 social workers at my side, one of them I believed was named Amber. They got me a chair that sat up really high so that I could be a eye level with everyone and everything. She was asking me about if I wanted a clergy member to come, or what I needed. I was in such a state of fear, shock, and felt totally lost that I didn't know what to say. But then I heard the blond female doctor "shout" to one of the many nurses there, "Get THE BOX" 
"The box? What box?" I am thinking in my head. Then I saw it once the nurse sat it down and opened it what the back side inscription read: "Cardiac Arrest" I felt the blood drain from my face! The social worker went over to where Izzy was then came back and said to me not to worry, that Izzy was NOT in cardiac arrest but they just needed something from the box. So that, for what it was worth, made me feel a tiny bit "okay". 
Then I looked up and saw Adam coming down the corridor. When he approached and said, "What's going on?" that's when I fell apart. I did my best to explain what events took place after he'd left to go get some rest and to catch him up on what was happening. The social worker helped explain things too. The blond female doctor came over to us to tell us that they  had done x-ray on Izzy's chest and heart and saw what appeared to be fluid around her heart therefore; they called to have a ultrasound machine brought in, but the first machine wasn't working so they were waiting on a different one to come. She went on to explain that if it was fluid, that they could intervene right now and get it off, but that there was no was she was stable enough for open heart surgery. I remember Adam saying to me, after her arrived, something like... Honey, maybe Izzy's getting tired, she's just tired, she's fought so hard.
Between all the commotion over surrounding Izzy, the social working trying to get a priest to come and asking me who we'd prefer and everything going on I was beginning to just feel numb and could do nothing but cry. Adam was my rock and held me up doing what he could for me at the same time I am sure he felt totally numb and in shock too.

Then I remember Adam rolling me over to another area that was not occupied by a baby, and he sat in a chair and had me facing him. He talked about Isabelle and what a fighter she's been and how proud we both are of her but it's like the doctors had told us earlier in the day about how they would keep doing everything they can for Izzy, and she's just tired. 
Moments later, the one female doctor that visited Adam and I ... when Adam was trying to have his movie date with Izzy and reiterated what the male doctor had said earlier in the morning... came over to where Adam and I were sitting. She again, said that they were doing everything they can for Isabelle and that she recalled me stating that I had not held Izzy yet. She impressed upon the fact that she would like us to keep in mind everything we'd talked about earlier in the day and that THAT moment was upon us. She wanted me to be able to hold Isabelle now, to hold sooner rather than later. In other words she said, with out saying it, she wanted me to have the chance to hold my daughter while she was living. She was as consoling as she could be and walked away. 
What could you even say at that moment? Nothing! 
Adam and I just embraced each other, crying. Then looking into each others eyes, we knew what was going to happen. I heard Adam say "it" but I could say nothing, I had NO voice, NO strength, all I could do was look at him and in my mind agreed with him, and I tried to shake my head in agreement but again I could say nothing.  Bawling uncontrollably, it was ALL I could do to stand up on my own two feet!   Adam's arms embraced tightly around my body, we walked over to where the hustle and bustle was going on over Izzy. All I saw were feet, I couldn't raise my head to see every thing going on.
"It's time, we want to stop, we want to hold our daughter." where the next words I heard. 
SILENCE rang out and very fast paced nurses and doctors began unhooking things and  moving machines about and out of the way. I was sat down into a recliner chair and in one swift, fast motion, a nurse lifted Isabelle into air, still intubated and hooked to few other IV's and such, as another nurse rolled away her bed and they rolled me under her. They placed her in my arms and this was the first time I felt her body next to mine! Adam knelt right next to us. 
Christine asked if we minded if she took some photos with a disposable camera, of course I said no, that it was fine. I am so glad and fortunate to have these photos today. 

The one blond doctor that had been working diligently on Izzy, knelt down beside Adam and I, clearly she'd been moved by all this for it showed in her eyes and in eyes of everyone there that night. She placed the stethoscope on Isabelle's chest and nodded once and quietly said, "Her heart has stopped" and she looked up at the clock on the wall and said, it's 4:00 am. 

Isabelle grew her angel wings. 

The respiratory therapist made sure it was okay for her to remove Izzy's breathing tube. It was also the first time I ever saw Isabelle with out it! 
The priest arrived and said a blessing and a prayer over Isabelle
Tom and Margaret were called as well as my mom, Frances. 

We sat there for a while then we were moved to a large private room. It was here, that Tom and Margaret got to come in and bring Chloe with them. Christine and another nurse brought us anything we needed or asked for. They even brought in a cart with all these items on it for us to use at our disposal. It had everything from pens, crayons, paper, scrapbook like papers, tooth brushes and toothpaste, snacks, and even a blanket and many other items. 

There wasn't much conversation between us all in the room. Chloe came over to me and I did my best to explain that the baby Mommy was holding was Isabelle, her baby sister. I didn't bother going into what happened or even explain that Izzy was our ANGEL now, I just let Chloe see her and touch her if she wanted to. I think she was more concerned about why everyone seemed to be crying. Eventually, she lost interest and entertained her self with graham crackers, a drink and walking about the large room. 

It was explained to us many times over, that there was absolutely no rush and that we can take ALL the time we wanted and needed to be with Isabelle. 
After a long while, Tom and Margaret took Chloe back to the Ronald McDonald house to let her sleep more if she wanted and to feed her breakfast. So Adam and I spent the next several hours holding Isabelle. Christine and another nurse came in to remove Izzy's pacer wires and put a bandage over that spot and the area where her peritoneal dialysis had been placed, and put a fresh diaper on her. Christine said she'd be back with some items so that we could bathe her. Christine helped me bathe Izzy and to cut the longest lock of hair for us to keep. All these precious moments were recorded by photos that Adam took.
We had to call Tom and ask him to bring "Izzy's Bag" from the room up to us so that we could change her into her "little sister" outfit. Christine did suggest that if we had an outfit we didn't want to keep, to dress her in it before leaving. So after her bath, we put her pink "little sister" outfit on and took a few photos, then changed her into a yellow, one piece jumper. 

My attempt at making a heart around her feet! 
Daddy's heart is much better! 

After her bath, Christine brought in a scale for us to weight her. 
Isabelle's birth weight on Sept 17, 2012 = 5 lbs 13 oz
                           weight on Sept 21, 2012 = 8 lbs 12 oz                           weight on Sept 22, 2012 = 9 lbs 4 oz.

Isabelle gained nearly 4 lbs in "water" retention !!!!

Adam asked if they could bring in a small baby isolette for us to put her in instead of laying her on the large, adult sized hospital bed. Christine got us one and said that she doesn't understand why they hadn't thought of doing this in the past and that she was going to make that recommendation for the future... she said it was a wonderful idea and thought! 
By this time, a social worker named Jody had been in and out of the room answering any questions we had. She spent time with us, saying a prayer with us and then letting us spend some more time alone with Izzy. 
It hadn't noticed until way after we'd been in the room for hours that it was decorated with butterfly decals! I couldn't help myself and had to have one to keep and one to give to Izzy later. I couldn't believe I was surrounded by these butterflies the whole time and didn't notice!  Had I decorated a nursery for her, I'd planned to do it in butterflies. So needless to say, butterflies are like our "sign" from Isabelle now. SHE IS OUR BUTTERFLY!! 
We swaddled Izzy up in a blanket, and I carried her over to the window to look outside, up into the heavens above ... knowing she was up there now, in peace, perfect health and she was now our precious, beautiful angel. 
Another hard part of this day was the time we left. WE placed her in the isolette and I got into my wheelchair but didn't want to leave. Jody, the social worker stayed with us the whole time. I remember being wheeled out into the hallway, looking back in the room seeing Izzy in there, ripped me apart all over again. A nurse was brought into the room so that Izzy would not be all alone until "they" came to pick her up. Slowly, we made our way to the Mott's entrance. Adam went to get the car and Jody sat with me, in silence, providing me with a pat or rub on the back on occasion. She THANKED ME for letting her stay! I looked up at her and said, "No, THANK YOU Jody!" 
Once in the car, it was as if we couldn't budge. We sat there for a few minutes, unable to leave this hospital. Once we started driving away we had no idea where we were going to go, we just needed a little bit to be alone, knowing Chloe was cared for... we drove off. It was well after 10 am ........

We went to a University of Michigan store to buy some Michigan apparel or whatever we felt like we "needed". I didn't CARE that my eyes looked like golf balls and that I'd been hit by a truck. I didn't care about much at all! 
We made our way back to the Ronald McDonald house to see Chloe and make arrangements for going home or what ever came next. 
I was so glad to not see any other residents at the house, I didn't want to talk about anything, I didn't want to talk at ALL! 

Our lives ... FOREVER changed. A terrible pain ripped through and grasped our hearts and had no indication of ever letting go. A huge void, a horrible emptiness and "fog" encompassed every thread of my body. 

This isn't happening... this didn't just happen. Isabelle, oh my sweet angel, how am I, how are we supposed to go on? 

What are we to do now??????????????????


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  2. I just found your blog through baby center. I was searching because my son has HLHS. I cannot believe what you have gone through. My heart goes out to you and your family. You have endured so much. I hope you have been able to find some small amount of peace over the past year. Please know that other heart moms out there truly appreciate you sharing your story. It takes a lot of courage. Sweet little Isabelle is very lucky to have such a strong mommy.