Sunday, November 17, 2013

SHOCK!



State of Shock! 
Like I said in my last post:
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. 

Pulling away from Mott's, having no idea where we were going or what we were doing, it felt so unreal that we had just "lost" our precious baby girl. The feelings are truly indescribable! 

I know that everyone handles shock and/or grief in their own way and to some, the way one handles it may seem extreme or odd where it feels totally normal to the person IN it at the time. So, what we did next may seem odd to some, and that's okay, but again, Adam and I felt totally "lost", needing time to absorb what just happened and just grasping at whatever gave us comfort in the moment. We ended up at a University of Michigan gift shop called The M Den and there we scooped up some clothing items. We felt a "connection" with Michigan now and we will forever so I guess this was one way for us to "never forget". I recall going into a dressing room to try on some sweatpants and upon looking into the mirror I was horrified at what I saw. I looked horrible with my eyes swollen, puffy, red and the size of golf balls yet at the same time is didn't care what ANYONE thought! I didn't have much "care" about anything! After leaving The M Den, we called Tom and Margaret to let them know we were on our way back to the Ronald McDonald house. 
When we got back, Chloe was entertaining herself in the playroom and I just hugged and hugged her. Margaret and Tom sat with us but we didn't really exchange a lot of words, after all WHAT could you even say? Tom did, regretfully, inform us that we were not able to spend the night again there at the house since we no longer had a "patient" in the hospital. While I understood and even now I understand it's policy, it also was just very hard to digest because we just went through the hardest thing EVER a parent goes through I felt like we were getting "kicked out" during the worst part of our life! So we had to go pack up our room and find a place to go. Sure we could go "home" but our "home" is in Evansville, a 9 hour drive ~ not something we wanted to do at this time. We could go "home" to Kokomo and stay with parents or other family, but we didn't want to do that either, we just wanted to be "alone" and didn't WANT to leave Michigan ... yet. Honestly, we didn't know EXACTLY what we wanted, we just knew we weren't ready to leave. After packing up the cars, we said our goodbyes to Tom and Margaret and reassured them we'd call them but that we just needed some time alone together as a family. We all loaded up into our cars and drove away from the University of Michigan Hospital ~ yet another bittersweet and difficult moment for us! 

We ended up spending the night one more time in Michigan at one of the hotels we'd stayed in before during our many trips to Mott's. We just hung out, ate dinner, and set Chloe up in her pack and play to "play" and sleep while Adam and I tried to find comfort in our own beds; clutching onto items that belonged to Izzy. Exhaustion eventually overcame our bodies and we slept and slept. I know for me, my "sleep" was jolted awake many times by pain, panic, tears, and pure gut wrenching emptiness. Bound by ace bandages around my breasts, an abdominal binder for my stomach and incision area accompanied by the agony of this unthinkable and unbearable loss ... each of which were constant reminders; painful horrific reminders that Isabelle was NOT in my and Adam's arms.  Not to be TOO graphic, but with EACH shower I took, having to waste what was supposed to be nourishment for Isabelle, proved to be physically and overwhelmingly emotional moments for me that I was not prepared for. With each gut wrenching cry I felt pain in my abdomen and incision and I just wanted to die, I wanted it to just all go away I didn't know if I could overcome this feeling and to come out on the "other side" in one piece, a good wife for Adam and a good mother for Chloe ...
I was in a million pieces and had no idea how to make them fit nor where they belonged. 
It became a ritual for me, the painful triggers and reminders with each shower and the process of bounding my body back up afterwards ~ that process left for Adam to do, to bind my fragile body back together. As bad I wanted to to all end, for the milk to quit coming in so I wouldn't have that trigger and for the painful incision to heal; at the same time I felt like once that all ceased, I'd start "forgetting" and that also frightened me. How long would I endure this  routine, this process? I also thought to myself how "terrible" I looked when I peered into the mirror and thought about what strangers saw as they looked at me, but then thinking they don't SEE what is under this clothing I wear, they don't see what's behind this worn out looking face sporting puffy eyes, swollen feet and this slow moving individual, they have no idea nor have any reason to judge. Nor do I do ANYONE I may "wonder" about as I look at them. My views and feelings have been forever altered! "Unless you've walked in my shoes" ... has a whole new meaning to me. 
Then came the "phone call". The dreaded funeral home phone call. Adam handled it all; VERY well I might add. Arrangements were made to transport Isabelle to Kokomo and a meeting set up for us to go to the funeral home for further arrangements. I can't begin to imagine where his thoughts or mind took him, like mine did to me. All I do know, is that HE WAS MY ROCK and still is to this day. I just hope I am that for him. 

Not sure where we were headed from our hotel room in Michigan, or what we were going to do next.... we drove "around" and landed up in Target. Why? Well, who really knows. Numb and dazed, we just "window" shopped I guess and walked aimlessly through the store. Suddenly, Adam and I were separated, I alone and he had Chloe. I found myself nearly frozen and feeling panic overwhelm my body. There I was staring at infant clothing I turn to run away and I am smacked in the face with infant toys and other "infant" related items.  I was surrounded and felt totally out of control of my entire body, emotions and felt totally lost in a store I once found "fun" to go to. I bolted out of area eventually, into the main isle way and found Adam. He knew just by looking at me and glancing up at the store signage where I'd just come from. He said nothing to me, but instead held me up as I cried in the middle of the isle and he gently guided the cart holding Chloe and I away from the painful reminder. I could care less what passerby's thought ... I didn't even notice other people at this time.  Eventually I regained my composer, and we walked along together from this point on. We decided to leave, and started walking to the exit, but Adam stopped, turned the cart and us around because he noticed we were headed STRAIGHT towards the baby section again. 
So there we sat in our car out in the parking lot of a Target store unsure of where to go next or what to do. Staring at our GPS wondering what we should type in. Crazy ideas popping into our heads of places to go or things to go see perhaps Chicago.. we could see a Cubs game or walk around Shed's Aquarium, or find another spot in Michigan to site see, or just drive and see where we end up. We just knew we weren't ready to go "home", face family and friends or talk about ANYTHING, we just wanted to be alone and spend some time together, cry together, and just BE. 
We ended up driving towards "home" or towards Kokomo again... not sure exactly if we'd end up there. We even neared the exit that would take us to Chicago and debated on if we'd turn off or not and it all came down to if there was a Cubs game that we could go to. If there was, we'd exit and if not, well we'd just drive "home". I say "home" in quotes because nothing felt like "home" to us at this point. 
It's weird, the feelings that come over you after such a huge loss like what we just experienced. Honestly, it's no wonder that "outsiders" might think we're "losing it" or worry about us because our thoughts or choices may seem totally rash and unplanned to anyone else but to us ~ it made total sense! How long this "behavior" would last .... no one, not even us, knew the answer. 

When we called family, we told them we were okay to ease their minds. When asked where we were, we just gave vague responses, like "we're still in Michigan" or "we are in Indiana now" but never gave an exact location. I guess we just didn't want to be "found" or something... or have people come for us. We decided to go ahead and head for Kokomo, and just get a cheap hotel there because we didn't want nor feel like staying with anyone. Again, we didn't want, or were ready, to "talk" about it or go over everything that had happened, we needed OUR time to process and absorb everything and felt we needed to do this alone as a family and to spend time with Chloe. 
It was very late when we arrived to our hotel room.  We got Chloe set up again, and settled in for the night. 

To be honest, I can't really remember much else other than telling the family we were in a hotel in Kokomo, but didn't divulge which one we were staying at. We did go visit my mother  and going to visit Adam's parents and at some point we checked out of the hotel and stayed with family. 
Over then next few days we had to go to a local funeral home to finalize arrangements. Wow, that WHOLE situation sucked! Its nothing anyone wants to do for a loved one, let alone their own child! We did what we had to do though! 

I did get a gift, a huge gift ~ a blessing some may call it? It was one of those situations where it was a friend of a friend of a friend sharing our story about Izzy and it got back to a mother who'd lost her son. This lady's name is Audrey McCormick and she and her husband Gabriel started a mission called "David's Gift" (named after her son who passed too soon; here's a link: http://www.davidsgift.org/ ). Her mission, a nonprofit charity, helps families who've lost a baby or small child with funeral expenses.  I called Audrey the night before we were to meet with the funeral home to make our arrangements. Not sure what to expect or what I needed to do, I was anxious and nervous to call, but gave it a shot. Audrey was so  compassionate and empathetic and wanted to offer her charity to me.  There were no forms to be filled out, no questions asked, just simply tell the funeral home about her charity and provide them with her phone number and address. Since is was such short notice, Audrey didn't have the change to mail out the brochures to me to give the director of the funeral home, so I just had to print off the home page of the charity.  I was in total Aww, and couldn't believe this was happening. We really had no idea how we were going to pay for a funeral and God sent us Audrey ... SUCH a blessing! I will pay it forward one day, and donate to her wonderful cause! 

So here's the other hard part we had to do, write our daughter obituary. 
I also want thank the staff of Sunset Memorial Gardens for helping us with this photo of Izzy; without her breathing tube! Thanks to David McWhorter, for all your help, patience and support and the entire staff for the wonderful care that they took of our precious angel! I also thank the man who had to stay at the funeral home until we left. Letting us spend as MUCH TIME as we needed to with Izzy, never making us feel pressured to hurry and leave.  I don't think we left until after 11pm! So THANK YOU again! 

I won't go into all the details or the personal emotions of the whole experience of Izzy's viewing and funeral ~ as I am sure you can imagine those days were hard and a blur for me.  A few things do stand out though! SO many friends and family came to wish us well and give their condolences; I was so touched by the amount of people at the viewing as well as her funeral the next day. After the funeral my mother-in-law had gotten silver star balloons to release for Izzy. She passed them out to people on the front steps of St. Pat's church and we all release them. Later I was told that the construction crew that was across the street stopped their work, took off their hats and stood in silence across the street as we did this and until the hearse drove away. Then I was told by my sister-in-law and brother that after it seemed all the balloons had flown away, suddenly a group of them appeared, all tied up together ... a group of 4 (if I recall this correctly) to me it was a sign for the 4 days she was here on Earth with us.  
The whole situation, the viewing and funeral was so surreal for me and my husband. Our priest did a wonderful job on the eulogy for Izzy and I wish I had it in writing ~ it was so very touching! Among the many great things he said, one thing in particular still stands out and that was that even though Adam and I knew our baby was sick before she was born, we made the choice to give her life even when death may or may not have been in our future. WE GAVE HER LIFE and she changed our LIFE forever! 



October 2, 2012

Isabelle Grace 'Izzy' Groninger

Sept. 17, 2012 - Sept. 22, 2012







Isabelle Grace “Izzy” Groninger, passed peacefully in the arms of her loving parents on Sept. 22, 2012, at CS Mott’s Children’s Hospital at the University of Michigan. Isabelle Grace was born at 5:21 p.m. Monday, Sept. 17, 2012, at St. Mary’s Hospital in Evansville.
So beautiful yet so delicate, like a butterfly Izzy fluttered into our hearts and made our lives that much brighter if only for a little while. During her four short days here on Earth, Izzy touched many lives and was loved deeply by family and friends. Although we only got to hold you for a little while Isabelle, we will love you and hold you in our hearts forever.
Izzy is survived by her parents, Adam and Angela (Renshaw) Groninger and her sister, Chloe; her great-grandmother, Alvessa Trevino and her grandparents, Thomas and Margaret Groninger and Frances Renshaw; along with uncles and aunts, David and Barb Renshaw, Jackie Renshaw, John Renshaw, Jill Osman, Philip and Amanda Groninger and by numerous cousins. She was preceded in death by her “Papaw,” Jerry L. Renshaw.
Visitation will be 4 to 8 p.m. Wednesday at Sunset Memory Garden Funeral Home. A funeral Mass will be at noon Thursday at St. Patrick Catholic Church.

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??????????????????



Sunday, September 8, 2013

Rough Night!

Rough Night! 

After finally being reunited with Izzy and spending much needed time with her it was time for us to head out and try to get some rest.
Adam and I followed Tom and Margaret to our new "home" in the Ronald McDonald house. It was a very nice facility and I am grateful that it was available for us to use. 
Our room was nice, large enough for us all to fit along with Chloe's pack-n-play.  There was one full size bed, one twin and a fold out cot. It was very basic, nothing fancy, but then who needs fancy when most of your time is going to be spent in the hospital anyway! I knew it would prove to be challenging for me sleep in a regular bed.  It had only been 3 days since my c-section and I'd normally would just be getting discharged from the hospital, where there and when I stayed at Phil and Amanda's, I'd been sleeping in a "reclined" or more upright position. Laying flat after such and operation is nearly impossible, painful, and quite uncomfortable. I didn't have nearly enough pillows to prop my head and back up let alone prop up my swollen feet! Everyone fell fast to sleep everyone but me. Trying everything I can think of to relax and try to sleep, listening to Adam's ipod with soothing music wasn't helping either. Listening to everyone's rhythmic breaths and off rhythm snores was driving me nuts. I was beyond miserable and knew getting even a few hours of sleep was going to be quite a challenge! I, of course, had to get up and go out into the hallway to the shared bathroom. I looked at the tub and thought, "Humm... now I could sleep in there.... but... I can't because it's a shared bathroom between us and with the next door occupants." SIGH... back to the room I went, and attempted to situate the pillows and attempt to sleep. I laid awake most of the night, not only I was miserably uncomfortable; but also because my mind was 100% thinking about Izzy and I cried for her.  I think pure exhaustion took over and at some point I dozed off. The next thing I knew, I heard rustling and moving and I am awake and not going back to sleep. I knew from that moment on that I have to find a new sleeping arrangement or "sleeping" in a recliner next to Izzy for as long as it took me until I felt that I could lay "flat" in a regular bed. So I made the decision to spend the night with Izzy, the night of the 21st, besides I just had a strong desire to be next to her which everyone understood. I didn't like that Adam couldn't stay overnight there with me too, but they only allow one person to be there "sleeping" in her area. 

Now on top of all that was going on with me emotionally and physically, my body (or hormones) suddenly decided that my milk should come in! The moment I laid my eyes on Izzy, I felt something happening, something that was not happening back in Evansville when the lactation consultant has trying to help me. So the brain REALLY does play a huge roll in breastfeeding! I was elated that now I could do something for Izzy! I didn't think I'd ever be so happy about pumping!! So now by morning my chest was extremely tender I was in desperate need of a consultant to help me out because I had no supplies for pumping this breastmilk for Izzy and I wasn't about to just let it go to waste because I just knew I needed to do it FOR her for when she's able to have it. When we arrived to Izzy's floor, I immediately put a call in for a lactation consultant to visit me. 

Good morning, Sept 21st! 
Once everyone was up and ready to go, we headed to the hospital. It was just a little 10 minuet walk from the Ronald McDonald house, which was very convenient!  Margaret and Tom watched Chloe for us while Adam and I visited Izzy. 
The lactation consultant made her visit and helped me out tremendously! She showed me where I needed to take my expressed milk, for them to hold it for Isabelle. She told me to try to pump every 3 hours and every little bit counts. So I did just as she instructed, unless my body told me otherwise! I forgot to mention too, that I'd been wearing an abdominal binder since I left Evansville to help restrict movement while we were in the car and since I'd been released early, they felt it would help .... which it did! So what I am trying to say here is that I was physically a hot mess of binders and a engorged, painful chest, exhausted and very emotional! A site to be seen.. ha ha ha! 

One of Izzy's doctors, a male doctor, came to talk with us at Izzy's bedside. (I apologize for not remembering everyone's names too!) 
He was talking about Isabelle's condition and explaining that she was a very sick little girl. He said this MULTIPLE times and each time the word "very" was pronounced with a certain tone. He went on to say that many babies come to them with HLHS but rarely do HLHS babies come with the multitude of "issues" (for lack of a better word here)... that Izzy is presenting.  Rarely do HLHS babies come to this this sick. They are unsure of what situations the  extra material~the duplication~on her 8th chromosome may be presenting, nor do they understand why her kidneys are not working properly. Also, Izzy's heart rhythm is having difficulties maintaining NORMAL rhythm and until that can be resolved she cannot have her first open heart surgery. It's just too unstable. Every time her pacer needs to be adjusted, it throws off the balance of something else, which in turn cause more or less of this or that medication. EVERY great once in a while, Izzy could maintain a 'normal' (normal for her) heart rhythm. If you recall from my post  in Sept 2012, entitled Second Trip to Michigan, Izzy in-utero had a concerning heart rhythm where her bottom ventricle would not beat in proper sync with the top atrium. This was STILL the case and why she had to have an pacer placed. 

This doctor said they are ALL here to do what that can for Izzy for as long as she needs it. He explained that they have a board of doctors and nurses that discuss each patients case. He then went on to say words and phrases that didn't resonate very well with me or Adam. So he repeated himself SEVERAL times. It's not so much we didn't "get it" or "understand" his words, it's just that it wasn't something, I don't think, we were prepared to hear. I have, I believe, blocked this conversation from my mind, but I will do my best to try to explain what was said.
In essence he said that we need to keep in mind how sick she is and that they can only do so much and will continue to do what they can to keep her 'comfortable' and will only stop intervening if we tell them to.  We must understand that we would NEVER have to make this decision on our own, that the team of doctors would re-evaluate daily and let us know how Izzy is and what is going on. That the team would  help us in any decision we made and that we'd not be alone in this process. He talked about her quality of life being very uncertain with everything that is currently happening and that they cannot say when or if she'll be able to have her first and necessary heart surgery.   He said that she is sedated to where she can't feel pain, so she is 'comfortable' and they will keep her this way (and again) that she is a VERY VERY sick little girl. With out saying it with words, we understood what he was conveying to us. He was very nice and had a great bed-side manner and I know this is never something any doctor wants to tell a patients family.
Needless to say, after he left, Adam and I did our best to keep it together.  We told the nurse, that was in and out checking on Izzy during the doctors visit,  that we needed to go out for some fresh air for a while. 
We wanted to go some where we could find a peaceful quite and private place to let it all out and cry, scream, bawl or whatever it is we felt the urge to do. Some place was a garden, a place called an Arboretum but we were unsure of where this place was or how to get to it, but it didn't matter we needed to look for it! Adam quietly pushed me through the halls of the hospital as we both sobbed not caring who saw.  He continued to push and pushed me up and down hills in my wheelchair out side to locate this garden, after we knew we couldn't find it on our own, we asked a passerby. Finally we arrived to this arboretum and it's exactly what we needed. Adam wanted to push me further and further in, but I knew it was not easy going over the gravel, dirt, and grass so I finally got him to stop and I'd do my best to walk to where ever we decided to "land".  We walked among the gardens of  flowering bushes (dying off) and plants and up a hill we found a nice shady area with a bench under a large tree. There we sat for a LONG LONG time. Silence and sobs, cries and sniffles, and more silence. We talked about Isabelle and how much we loved and adored her. We talked about how before she was even born, knowing her condition, that we might have to face difficult challenges and talk about things that were not going to be easy. We knew there was always understood that there was a possibility that Izzy might not make it; but we NEVER imagined it to be so in our face so early on in her life. We knew she was a strong fighter, but we were facing the fact that our Izzy was also tired, growing weak and was very, very sick....sicker than we'd thought. 

We called Tom and Margaret to let them know what had occurred, where we were and that we just needed to be alone for a while. 
Eventually we made our way back to the hospital and we wanted to buy Izzy something. So we searched and searched for the "perfect" something. We bought her a pink cap with M on it for the Michigan logo, and Adam found the perfect stuffed animal (I assume it's a Wolverine?) that is wearing a grey Michigan sweatshirt ~ it was the last one the gift shop had. We passed the chapel and both decided to stop for a moment. Now going through this pregnancy posed a challenge to me and my faith but I wanted to ask God to just help and pray for Izzy. There were blank note cards in the entrance for anyone to write a message on or a prayer request or whatever and then you could hang it from a clip attached to a string in front of a frosted window. After a few moments, I decided to write a note and I hung it up. I wrote a copy of it to keep for myself and I still have it ... somewhere.  

We made our way back to Izzy and talked to her, and cried over her, and gave her her gifts. I put the cap on the stuffed animal and we placed it near Izzy. At the foot of her bed was a pink fleece blanket. It was handmade and donated by another mother who'd lost her daughter, Madison Rachel Lasley. All the babies had one of these special blankets. We didn't stay long, we needed to get back to Chloe and eat lunch. 
KISSES galore to Izzy... and off we went. 
We talked more with Tom and Margaret and I called my mom to let her know as well, what has transpired and ask that she forward this on to everyone else, I, honestly, didn't have the strength to do it myself. I expressed to my mom that I really needed her to relay anything I told her that it was just very difficult for me keep it together and talk on the phone saying the same thing over and over and over, besides the fact that the reception in the hospital was near impossible to get. 

After an early dinner, Adam and I wanted to get back to be with Isabelle. I went a head and packed a small bag to take with me since I would not be returning back to the Ronald McDonald house for the night. Adam took his computer so he could have a movie date with Izzy and watch Tinkerbell with her. We got settled in, I went to the lactation room, again, while Adam began his movie with Izzy. 
Then another one of Izzy's doctors came up to introduce herself and talk about Izzy. She was nice, live everyone there was, and she was very concerned for Izzy. She reiterated the known fact that Izzy was very sick and that her kidneys were not working. She asked if I had been able to hold Isabelle yet, and I of course I had to tell her no. She went onto explain like the doctor that visited earlier in the day, that they will continue to do what's necessary for Izzy and they are doing everything they can now, but they are topping her out on the medications that she is on and she's not getting better. Her heart won't stay on rhythm on its own for very long, if at all, and they have to constantly adjust her pacer.  She kept saying, without really every SAYING it, that we needed to keep all this in mind and know that she's fighting, but is tired too. She kept saying that she wanted me to be able to hold my baby.... she was again implying that she wanted me to be close to her incase things took a turn for the worse.  She didn't have to SAY the words, we understood what she was getting at CLEARLY. She said a lot, but I can't recall it all anymore, again... I have blocked a lot of it out but I can recall images and surroundings just fine. I do know that Adam had heard enough, and went back to Izzy's bedside to continue the movie. We'd talked earlier about how we didn't want to talk about this "stuff" in front of Izzy, yet here we were; and there I was.... still in conversation with the doctor, something I look back on now, and wish I'd never done. We should have gone away from her bedside area into a different location, just like Adam and I had agreed upon. 

Needless to say, I had to apologize to Adam for doing exactly what we talked about NOT doing and I apologized to Izzy as well. Telling her I love her and that she's my brave little fighter and that I am so proud of her. I told her she had more heart than some people that have been living for years.  She's touched the lives and hearts of everyone she's been in contact with. I also told her that Mommy and Daddy love her SO MUCH and we will forever; but that if she was tired, I understand, and I am not upset and that I am so very proud of her. Now, yes I was upset but not at her... I didn't want her to think I'd be upset with her for not ... continuing the hard fight. 

While Adam was still there, I decided to go back to the lactation room. After I returned, it was nearly midnight and Adam decided to try to go back to the Ronald McDonald house to get a little sleep. Before leaving, he gave me a kiss and gave kisses to Isabelle and "tucked" her in for the night. Little did I know, I'd see him again sooner than I thought! 

I looked up at the clock and keeping track of when I last pumped in a note book and mentally thought and counted the hours for when I needed to go back, it would be around 2:30 am or quarter till 3:00 when I'd head back to pump again. 
Isabelle's nurse check to see if I needed anything, and gave me a menu because I could order a meal for free since I was staying there with Izzy. She also got me a few warm blankets too. 
The nurse was in and out of Izzy's area, like usual, doing whatever it is that needed done or changed or adjusted. 
I reclined the chair and tried to relax, but couldn't. So, I got my computer out attempting to catch up with emails and people on Facebook asking how things were going and I was just reading or trying to read the many posts of well-wishes from so many people. It was very emotional and overwhelming that there was no way I could respond to anyone or update anyone on how things were. So, I just shut my computer and watched Izzy.  

Things were about to change..........

Tuesday, September 3, 2013

Left behind

 Meanwhile...
It's quite difficult to watch your fragile newborn baby being "taken" away; knowing she was about to take her first plane ride... without either of her parents, but we trusted she was in good hands. After the flight crew left, Adam and I were taken back to our room and reunited with Chloe. Adam and Chloe went back home to get much needed rest. I dozed on and off between the nurses visits checking my IV and giving me pain meds. 

I do believe it was quite late on the 17th that Adam called his parents to tell them the latest news on Izzy.  It was 1:30 am when Tom and Margaret grabbed their bags and head to Mott's hospital so that they would be there or soon after, so that Izzy wouldn't be all alone until we could arrive. They arrived to Mott's around 5:30 am on the 18th and didn't get to go back to see Isabelle until 7:30.  I am not sure what time Izzy actually arrived to Mott's. I recall Margaret tell me that  she scanned the room, but knew immediately which one was Izzy once she laid her eyes on her. 
I will FOREVER be grateful for their choice in driving to the hospital that night Izzy was born!  

Sept. 18th:

The next day my OB doctor, Dr. Schroeder, came by to check on me and let me know she'd probably keep me for at least one more night and go from there. She understood how badly I wanted to be released early to take the trip to Michigan, but she also had the responsibility to care for me... as her patient. Knowing I wouldn't be released the very next day after a c-sesction was no surprise to me, but it was still disappointing to hear! 

Other visitors came by as well, a hospital Chaplin, a Nun from a local church visited for a while and the lactation consultant came by as well. I knew I wanted to try to pump breast milk for Isabelle if I could, I just wasn't sure my body was up for the task! I did try, but with NO result, just a lot of pain. The consultant came by several times that day to see how I was getting along. She was so kind and patient. She sat and talked with me about Isabelle and she understood my frustrations on not being able to provide my milk for Izzy; when at this point, it's all I FELT I could do FOR Izzy as her Mommy when everything else was out of my control, leaving me feel so helpless.  I was so upset that my body wasn't "working" or cooperating as I'd hoped, but had to try to not let it get to me too bad because that wasn't helping matters either.  

Later that day, Adam, Chloe and Amanda and Zac showed up. I was so happy to see my sister-in-law and Zac. Amanda said she just couldn't do NOTHING so she told her husband she was packing up the truck and heading down to Evansville to at least try to help in anyway she could. Even if it was to just help out with Chloe. She was a life saver in more ways than she'll know! Adam still needed to get the car packed up and ready and that could have been challenging enough on its own ... not to forget having to entertain and care for a one and a half year old all on your own, along with all the emotional stress he was under!! So after they stayed and visited for a while, Adam, Chloe, Amanda and Zac headed back to our apartment to pack up and let the kids play and hopefully get Chloe down for a nap! 

Later that evening, Adam returned alone to stay with me overnight. It was nice having him near me like that. Even though he didn't have to stay, I am so glad he did! 

Sept. 19th: 

I am pretty sure I have this right, but on this day, the 19th, Adam received a phone call from one of the doctors at Mott's. He needed permission over the telephone to do a surgical procedure on Isabelle. They needed to put a external pacemaker (a pacer) in/on her for her heart. She was, like she did en-utero, having difficulties keeping a steady heart rhythm. There were also concerns about Isabelle's kidney function. 
I also discharged today!! It was with strict instructions from my doctor to stay on top of taking my pain medication and that we stop every 2 hours or 3 at the most, so I can get out and "walk" (as best as I could) to keep the circulation going in my legs. 

We headed back to the apartment to get the car packed up and Amanda helped me out with re-packing Chloe's suitcase. I couldn't do much of anything, it took all I had just to walk up and down the stairs! We didn't waste much time and whatever was left behind we'd just have to deal with later. We decided instead of making the 9 hour trip all at once, it would be best to cut our trip in half and spend the night at Phil and Amanda's home in Carmel.  It would allow me to get my feet elevated and rest as directed by my doctor. For the entire trip, I sat in the back of the car with the front passenger side seat folded down forward with pillows propped up on it so I could keep my feet up as best l as I could.  Just like with my c-section with Chloe, this one too caused a LOT of swelling in my legs, ankles and feet. I also made sure to keep right on track with the pain meds, we knew this car ride was going to be quite uncomfortable and painful! Whew... that's no joke either! BUT, when you have no choice, you just got to do what needs to be done! 
Once we arrived to Phil and Amanda's home, I pretty much camped out in their recliner and that's where I stayed until we left the next day to head to Kokomo before we went on to Michigan. 

Sept. 20th:

So today, we headed towards Kokomo, I wanted to stop and visit my Mom. Then we went onto St. Joe Hospital to see all my old friends and co-workers before we left town towards Michigan. 
Mom told me, while I was on the phone with her from our apartment in Evansville, about a person who wanted to remain anonymous. This person wanted to purchase a plane ticket for me to fly to Michigan so I'd get there faster. While I appreciated this generous offer, I declined for a couple of reasons, one being I doubt I would have been allowed to fly in my condition. The other was that I wanted to be with Adam and Chloe, it was important to me. When I arrived to my Mom's later that day, she informed me that this anonymous person wanted to still do something for us and gave us a gift. It was a very generous gift along with a book, "Guess how much I love you". I just wish I knew who this person was, for even today, I still don't know who they are.  I had to send my Mom a thank-you card to forward onto this anonymous individual! 
Then we went to St. Joe. I couldn't hold my tears back the second I laid eyes on all my old co-workers & friends. It felt so good to finally see everyone. They all knew of Isabelle's heart condition and were praying for her and us daily. As it was for us, it was a shock to them as well that Izzy came early! So many gathered around, gave hugs and well wishes and shared tears with me. I was also given another generous gift from a huge group of them and some others gave me gifts as well, it was all so very overwhelming and touching.  My heart FELT everyones love! They will always remain my "work" family! We ate lunch with everyone and then left for Michigan. 
 

 Overwhelmed by their generosity!

Emotions were all over the place!!                      

 


Back on the road again. The drive to Michigan was as expected ~ painful! I could literally FEEL every bump in the road, every pot hole and I could tell when the pain pills were wearing off. We stopped just like we were instructed so we could stretch out our legs. It's not fun climbing in and out of a car after a c-section, nor is walking on legs and feet that feel and are 3 times the size they should be! It was a "quite" ride for the most part. I know Adam was anxious, worried, stressed and just ready to BE THERE already! Chloe did really good in the car and I am SO thankful for that! 
We did get a call from another one of Isabelle's doctors telling us that they were concerned about her kidney function. They needed to intervene and place her on peritoneal dialysis. Here's a definition from the Mayo Clinic: Peritoneal dialysis (per-ih-tuh-NEE-ul di-AL-uh-sis) is a way to remove waste products from your blood when your kidneys can no longer do the job adequately. During peritoneal dialysis, blood vessels in your abdominal lining (peritoneum) fill in for your kidneys, with the help of a fluid (dialysate) that flows into and out of the peritoneal space. (photo: http://www.mayoclinic.com/health/medical/IM04513).

We arrived to Mott's just after 6 pm on Sept 20th. Tom and Margaret were there at the entrance waiting, with a wheelchair in hand, for us. We got Chloe out, put her in her stroller, got me in the wheelchair and waited for Adam to get back from parking the car. We checked in at the desk, got our ID badges and headed up to see Isabelle. Neither Adam or I can remember why we couldn't go right back to see Izzy, but we had to wait... and wait ... and wait. 
We went to a waiting area where Margaret introduce us to another family who was waiting for their son to get out of his surgery. He had HLHS as well, and was having his second procedure done (If I recall correctly). She was showing me photos of her son, talking to me and honestly, I don't recall much of anything. I was just a bit overwhelmed, tired, in pain, and wanting to see my daughter and couldn't get my mind off of her. It seemed like and eternity really but we finally got to go back and see Isabelle for the first time since she left our site on the eve of Sept 17th. I've never felt more anxious in my life! It was just Adam and I that went back with the nurse. 

It was a moment I wish I could freeze in time. I wasn't sure how I would react upon seeing Isabelle laying in her bed hooked up to all this "stuff". To my surprise, I did not cry, at first anyway. I couldn't get out of that wheelchair fast enough! 
I FELT WHOLE AGAIN! 
Seeing Izzy, made me relax and I felt a sense of "relief" to finally be by her again. Adam and I went straight to her bedside and said our hello's and gave her gentle pats and kisses. The nurse on duty that evening was so kind and so helpful.  She explained EVERYTHING that Izzy was hooked up to and why. She was very empathetic to us. Eventually, my tears could no longer be retained and I had to let them out and the nurse shed a few with me as well. She's grown "attached" to Izzy and said she's a little fighter. That nurse spent a good 30-45 min (or maybe even more) talking with us and explaining or re-explaining and answering all our questions. 



We did ask about bringing Chloe back to see her as well. The nurse explained that Chloe would be just fine, she'd be more interested in all the lights and sounds than anything else. So, Adam went to get Izzy's big sister and introduce them for the first time. 
Chloe's first time meeting Izzy!
Touching her tiny toes! 
Just as  the nurse had explained, within a few minutes, Chloe was more interested and intrigued by the lights and machines that surrounded her. 
After a short while, Chloe went back to Nana and Papaw so that Adam and I could say goodnight to our sweet princess. 
Good night sweetheart, we'll see you in the morning! 
Isabelle with her Michigan Life Flight Teddy bear with it's wings!