Here is a blog from Hope's special nurse. She may be our home care nurse, but she is willing to see Hope anywhere! I am still up in Edmonton as there was no beds available for Hope in Calgary today. The doctors are looking to transfer us tomorrow and decided the CT Scan could be done in Calgary. Please pray they find Hope a bed tomorrow. I really miss my family.
This is Hope’s best friend (or so I like to think so)! I have had the privilege of knowing Hope for a while now, and through her, I became friends with her wonderful family. I was so very lucky to be able to go to Edmonton with her mother, Amy, this week. I was excited to get out of Calgary and to be there for my two special friends this week!
I hang out with Hope a lot. I know what she likes, and what she doesn’t like. I know when she is in pain, when she is uncomfortable, when she is tired and when she is happy . I know she LOVES to be in her vibrating chair AND I also know that you have to bounce her with your foot while she is in it. I know she loves her ‘soother game’ (to spit out her soother after 10 seconds and make you dip it over and over again in sterile water, because her mouth is so dry) and I know she loves wet swabs in her mouth too. I know she hates dirty diapers more than anything and I know she loves to be held (but only if you are dancing her, patting her bum, or bouncing her on your lap). I also know if Mommy is in the room than she will want nothing to do with you! I also know she hates to be fussed over or touched too much. This is due to her anxiety from all her assessments, pokes, and procedures that she goes through everyday. I am pretty familiar with all her meds, feeds, infusions, procedures, vitals, dressing changes, and her medical history. I thought this week with Hope would be a piece of cake for me!
Well, I was wrong! The days in the hospital were long. Hope was in the ICE, a room with four children in one room with two nurses in the room as well. It was reassuring to know that the nurses were RIGHT there when you needed them, but in other ways, being in that room is exhausting. Amy knew most of the children in there (as she mentioned in a previous blog), and I could see that that was hard for her knowing some of her friends from RMH have still not gone home. It is also hard in that room because you see and hear the pain the other children are going through. Most of the mothers spend long days there by themselves (and some weeks) without the rest of their family. I can imagine people don’t understand how sitting in a hospital room and simply comforting a baby could be exhausting, but believe me...it is. The emotional toll it takes is so hard.
We both dreaded Hope’s heart catheter, but also wanted it to be done and over with. I don’t think words can describe (and I know many of those reading this blog can relate to Amy) watching a mother hand their child over to a doctor to go into the OR for a risky procedure. I watched tears come down Amy’s face as she watched Hope being carried down the hall, I had no words. What could I possibly say? Could I say I understood? No, I couldn’t. Could I say everything would be okay? No, I couldn’t. I tried to keep her distracted during the procedure but it was hard as I was so anxious too, but trying to hide it. When Amy’s pager went off after 4 hours, she literally jumped. I don’t think I have ever seen someone walk so fast and I tried desperately to keep up to her. When we got to the OR, Amy immediately saw Hope, but we were taken to another room. Amy said to me “Did you realize that they never said she did okay?” I cant imagine what a mother would feel like to be saying that. I wanted to hug her and cry, but I knew I had to be strong. I picked up a magazine, a pretty thick one, and tried reading it. I turned page, after page, after page, and I don’t think I read one thing. I couldn’t even tell you what that magazine was about. When the nurse told Amy that the doctor was delayed (again, like Amy talked about previously), and that Amy could see Hope while we waited, she honestly ran out of the room to get to her baby girl. I scrambled to get our jackets and purses. Hope was somewhat alert in recovery and reached out to hug her Mommy. After I took a picture, Amy immediately asked the nurse if she could pick her up. I don’t think words can describe how precious this moment was. Although, Amy was frustrated at the lack of answers from the heart catheter, the good news was that Hope got through it alive, and God will continue to guide us through the next steps.
I didn’t want to share my experience this week for everyone to feel sorry for Amy and Hope. I wanted to share it to explain how strong Amy and Hope are. I think Amy hugged and thanked every single person who came in to say hi to Hope, or to meet them. She welcomed everyone with such open arms. She was so thankful, as was I as her friend, for so much help. Throughout all of this, Amy always took time to talk to the other mothers in the room for hours to help relate to them, and to explain her journey, and offer advice. She was constantly worried for the other children. Of course, Amy was sad at times, and cries for her precious Hope, and of course, she misses Sadie and Shawn. However, she knows God has a plan for her, and she trusts that. She knows she will be okay. Even though all of this is so much harder than most people could ever imagine, she has so much faith and she will never be resentful. We cried a lot this week, we had a lot of anxiety, we had a lot of frustration, and we had a HUGE lack of sleep, BUT we also had a lot of laughs, hugs, smiles…and most of all, a lot of happiness. We CHOSE to have fun, and we sure did. From Hope’s ‘gangsta’ nasal prongs, to laughing and having all the talks with Amy’s friends, to our hours of driving around for Taco Bell, to all the candy we ate, to watching all our dumb reality shows at night. We made the best out of the situation we were in, and enjoyed ourselves. We were and continue to be THANKFUL. We both trust in our Lord. God brings people into your life for reasons. Thank you Jesus. <3
For all those who don’t have Amy on facebook, here is Hope embracing her Mommy as she woke up from surgery: