Home sweet home.

What an exhausting experience that was. We arrived at the hospital in Portland at 6:30 am on Monday morning. Many different doctors and anesthesiologists stopped by to check in and review everything they were planning to do. An hour later, we handed our sweet little boy over to a nurse and watched her carry him away. I broke down. The facade that had gotten me through the early morning trip to the hospital fell away and I felt it all at once- fear, sadness, anger, relief… it all rushed in. There was a nurse in the room who said to me with a very strong Maine accent, “we will all treat Ezra as we would want our own child to be treated- and trust me, we are tough customers!”. It was exactly what I needed to hear.

About an hour later, we were able to go back and see Ezra. He was whimpering and had his eyes closed. My stomach dropped to my knees when I saw his little belly. His oxygen levels kept dropping and alarms would sound, so we would hold the oxygen mask up to his little face. At one point, Ethan and I locked eyes and I was reminded that I am not dealing with this alone. He is right there with me to figure this out for our little boy. The anesthesiologist came over to check on Ezra and said that rather than relying on the machines, we should tune in more with Ezra. His lips were not blue, and his color was healthy, so we tried not to worry. We finally were told it was okay to pick him up and I got to nurse him. He settled right down. His oxygen levels continued to drop off and rebound, but we were able to move up to his room on the pediatric floor.

I imagine that the pediatric floor is a rather challenging place to work. We walked past rooms that are well decorated indicating that these were children who had been there long enough to accumulate all of the decorations on display. There were doors sealed shut with strict instructions about putting on gowns and masks before entering. I firmly believe there is no ranking of difficulty when it comes to tragedy- however walking these halls were a reminder how thankful we are that Ezra is not experiencing chronic pain. My hope is that this is our only surgery and hospital stay for Ezra. It was a crazy night. He was very fussy and uncomfortable and when I would finally get him to sleep, machines would start beeping and the nurse would come in. Or the nurse would decide that he needed his blood pressure done. On and on this cycle kept happening. Seriously- it was like the nurse had a sensor that would go off when Ezra fell asleep and she would come in 5 minutes later and mess with him. I was so desperate to sleep…

Finally it was morning and we saw another slew of doctors, residents and nurses. We crafted some sort of feeding plan to start using the tube. I was feeling very overwhelmed, exhausted and defensive. I want to keep nursing Ezra. Our pulmonologist has said that he is very supportive of this and wanted the tube put in preemptively while Ezra was healthy enough to handle the surgery. The nurses seemed confused about why I’d want to keep breastfeeding and said it was complicating the feeding plan. There is a certain number of ounces the nutritionist wants him to intake and the nurses kept saying that they won’t know exactly how many ounces he gets when he nurses. I get it, but the comfort he receives from nursing makes it worth figuring out. Which I have no doubt we will do. I am trying to track down a baby scale so I can weigh him before and after I feed him to get a sense of about how much he is taking in. We had a home healthcare  nurse come by today to see how everything is going. She was totally on board with Ezra continuing to breastfeed and thought it would actually help keep his swallowing muscles strong. I just have to trust that I am doing what is best for our baby.

Ezra continues to inspire me with his resiliency. Even after all of this, he continues to be a smiley, happy guy. Last night as I was putting Daisy to bed, I asked her if she has any questions about Ezra- expecting questions about the tube coming out of his belly, or the new machine in our room. She asked, “Mommy- what makes Ezra good?” I answered that Ezra makes people feel happy. He smiles at everyone and really looks at people when they talk to him. He is an excellent listener and brings lots of joy everywhere he goes. She seemed pretty content with this answer.  Of course I went on to share what makes Daisy “good” (a label I generally avoid using). I told Daisy she is creative and hilarious. Her smile lights up a room and she tries very hard at her “work”. I also reminded Daisy what a special big sister she is and how strong and healthy her body is. At this point, Daisy doesn’t seem all that phased by what is doing on with Ezra. She is curious, but not overly concerned by the tube coming out of her brother’s belly. And with each day that passes, Ethan and I are getting a little more comfortable and a little less freaked out by it all. It’s amazing what a family can adjust to.

I want to thank some special people who have taken it upon themselves to do fundraisers for the Families of SMA organization. Since moving to Maine, I have made a new friend named Shelby. Over the Thanksgiving holiday, she ran 13.1 miles and raised over $2300!! This weekend in Houston, my brother and sister-in-law are hosting a special fundraiser in honor of Ezra: http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?ID=7372&blnShowBack=False&idContentType=1154&Event=7372 . Thank you so much!!! We appreciate your time, energy and support.