Making Our CHKD Escape!

Thursday morning began... well, it's probably best to say Wednesday night evolved into Thursday morning. I was exhausted, but leaving the hospital soon gave me enough addrenline to keep my eyes open. Annabelle slept fairly decent during the night, despite the issues with the pump. I couldn't keep my mind on anything past asking everyone that walked thru our door when we would get our discharge papers. I wanted to go home so badly!


Life at CHKD: I lived in this baby jail.

We met with several doctors and staff during the morning. I've never been so busy talking with so many different people representing different areas of my daughters care. I've never had to juggle so many different things in preparation for leaving. From attendant care to home health, to follow-up appointments, feeding schedules and Mady's childcare - I was overwhelmed and my phone was on 20% battery by 9am. Nothing was stopping us though. Annabelle was already hitting her first wall and was so sleepy, she needed a nap but the staff never slowed down from visiting our room. Finally, our GI doctor came in to discuss any concerns and gave us the thumbs up to leave! Our discharge papers were being pulled together and I started packing and stripping the beds in record time!

Usually when we are being discharged from the hospital, I sign on the dotted line, smile and leave.. this time, I gave the poor nurse a run for her money. I legitimately had a million questions! As much as I wanted to leave, I wasn't prepared or educated on what we were leaving with and how to handle the pump idea! If the tube comes out, how far do I even put it back in? How do I measure? Where is another tube?!?! I truly wasn't educated enough. I was scared. But I'm not stupid and know I can wing this whole thing if necessary - but there were many things that they DID need to explain to me before I could walk away with enough education to know where to even begin.

Finally, all our bags were packed. I clipped Annabelle's Get Well Soon balloons to her dress and we made a run for it! She was SOOO proud and happy to tell everyone goodbye. I was too.

Lincare Medical met us at our house soon after we were home. She brought a couple bags of supplies and our Kangaroo Joey Pump, an IV Pole and a backpack that was larger than Annabelle. I smiled and told her, "That isn't going to work, there is noway she can carry that. Can we order something smaller, and does it come in pink? ;)  " She smiled and agreed. Together we setup her equipment and sorted thru all the tubing, syringes, tapes and supplies that I brought from the hospital and she brought from her office. I made my first attempt at telling her which things I wanted to order and which things I don't believe will be as useful. Beside the items we had on hand, I requested several other supplies to order that will be helpful:

1. Alcohol swabs (to clean tubes/ports/equipment before using), 
2. gloves (when starting a new tube or if things get messy and were not at home in our clean environment), 
3. cotton swabs/gauze (to use for a million different things, including cleaning her face from adhesive residue), 
4. Detachol (an adhesive remover for when we are ripping the tape off her face daily and/or switching sides.. to make the process more comfortable and not excruciating for her.), 
5. Stethoscope (to check for correct tube placement), 
6. pH strips (to test stomach contents for acidity levels to verify correct tube placement).

None of these things will Lincare provide. Im required to purchase them all on my own. It's not the end of the world by any means, but it is annoying that Lincare is paid an ungodly amount of money to provide a service to supply us with all our medical needs, and they don't cover ph strips, gauze and alcohol wipes. I can swing it on my own, but the convenience factor is what is most annoying. It's so nice to be able to have all those things delivered to your door and not have to run to the store on our own when we run out. We are drowning already without these other miniscule things to deal with. Rant over.

After Lincare left, Mady came home and I was SO happy to see her. I've missed my side-kick more than anything. We played for a while as I scanned all the things quickly flooding my house, I kept reminding myself to exhale and enjoy life in front of me and not the overwhelming mess. Mom came by to visit Belle and the Mady. I made her help me change the taping all over Annabelle's face which was about as painful of a process as you can imagine. My heart broke but we pushed thru and finally were able to have everything cleaned up and 10x more comfortable for Belle to wear. I was happy with the final result, Annabelle was less than pleased and wouldn't come to me for the rest of the evening :(


One thing that was a blessing in disguise however, was to finally be home. We were home to relax, exhale, TAKE A SHOWER(!!!!!), eat a meal, watch tv and try to start finding our own groove in this new path of life we are taking. Annabelle needed her bed more than anything. She was so happy to be able to pick out her jammies from her own dresser, run around the house in a diaper and crawl into her own bed finally. I was happy to change her sheets into her favorite ones and snuggle her warm with her blanket and clean pillows.

After Annabelle was in bed, Mady began to ask questions about how Annabelle had been gone for so long and why there was a tube on her face. I took the time to explain what was going on, in the most simplistic way I could. I answered her questions without sugar-coating the truth and allowed her to explain to me what she thinks is happening. Madelynne is 4 1/2, and while she is still young and a sweet toddler, she has also seen and experienced more thru living with her sister than many 4 1/2 year olds ever should. Because of Annabelle's condition, her health, frequency of hospital visits and now tubes and pumps, it's not fair to lie to Madelynne to protect her fears. Life is life and she needs to understand the severity of what her sister is dealing with and why. Madelynne has handled our families journey better than I ever could have asked her to. She is the strongest toddler I know and will grow to continue to be strong in life because of her experiences. At the same time, I always remind myself that while Madelynne is mature and understands what is happening, that still cannot rob of her of a toddler childhood and growing into her own little person either.

There is one thing this journey has brought to our family. It has taught us to love each of our children and one another both separately and together in our own way. My individual time with Mady is priceless to learn who this evolving young little girl is becoming. It is also an art to learn to love both girls together at how they interact and love one another.. and then everyone as our family of 4 and a dog. Before this nightmare, we often would find ourselves complacent in living a life all together and never individually - Annabelle's Journey is mandating we break apart and come together, I am so very grateful for this perspective, I gain and learn so much more about our family this way.. I learn so many new reasons to love each person that I may have overlooked if our time wasn't broken.

8pm was time for our first pump feeding. I rehearsed the process repeatedly in my head before entering Annabelle's room with guns loaded of syringes, alcohol pads and a feeding bag of formula. Mady wanted to be part of the process and we agreed she could help push the buttons on the pump when everything was ready. She loves being involved. She's an excellent little mommy. Annabelle was so tired and hardly moved as I got everything together. It didn't take long to set up and before we knew it, the pump was ticking along and a feeding was underway.

I stood up and looked at my little girls room. I wanted to smile at their adorably decorated, feminine room with white furniture, pink walls and a chandelier but I couldn't. I couldn't force a smile if I tried. The nightstand that held a sweet vase of fake flowers and framed family picture of our trip to Disney World was blocked by an IV pole. The damask stencil on their wall was glowing because of the LED display on the feeding pump. There isn't anything pretty about the equipment. It's ugly, it's sad and it's not what I want for my daughter. Annabelle laid in her bed with arms behind her head resting. Finally a smile started to pull onto my face.. she's being fed. Tomorrow her body will be nourished and she will have energy. Tonight she won't wake screaming because her belly is empty and hurting her. Next week, for the very first time, I will know she is being nourished. For that, I smiled. Now looking past the process to get us there will take some effort but for now I will consciously remind myself to stay grateful my daughter is alive and being fed without exhausting her own energy to do so.