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..........

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