Tuesday, September 3, 2013

Left behind

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! 
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! 

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