Today was full of many firsts for Hope and me. The occupational therapist came today to see if Hope was able to suck properly and if she could swallow. She is taking the soother very well and has maintained that reflex thankfully. They tried giving her a bottle, but she coughed and wouldn't take the milk. They let me try and she took it! She ate 5 ml from the bottle and has tasted milk for the first time in her life. Big steps for a little girl that has been through so much. We still have a long way to go, but we're moving in the right direction. Tomorrow they will start giving her larger amounts of food every hour, instead of feeding her continuously. Please pray that her stomach is able to tolerate it and we can move forward in her eating plan and get her eating every 3 hours like a healthy baby.
The cardiologist told me today that they are working to have me out of here with Hope when the antibiotics finish on the 26th of May. This was excellent news! I am praying that Hope does well with feeding and we don't have to be delayed by any problems. I'll need to learn how to insert Hope's feeding tube, give her injections for her blood thinner and monitor her weight daily. I'm more than willing to learn, although very nervous.
I went home in the evening tonight to have dinner with my family while Oma cuddled Hope. After dinner we went out for a drive and found a lost two year old girl standing on the road. That was a first for me! It felt good to protect that little girl until we found her frantic father. You don't often find a small child, wearing only one rubber boot, and standing at the side of the road. I can only imagine how I would feel looking for Sadie and not knowing if she was safe. When I left the house to drive back to the hospital, the two cars in front of me got into an accident. It looked like everyone was safe and the damage was minor, so I continued on my journey back to Hope. This day had almost too much excitement for me!
Tonight Hope was really upset for about an hour, nothing would calm her down and she was screaming. The screaming was causing her to de-sat and they were giving her oxygen to get her levels back up. After a dose of tylenol she seemed to settle. There was also some pooping done. We were thinking it must have been a gassy tummy but I worry whenever Hope is really upset. I fear the worst and have to remind myself that even healthy babies cry sometimes. I immediately assume that her lungs are failing or her heart isn't working properly.... never considered gas pains!
It feels incredible to be at this point in our journey. Hope has come so far and amazes me each day. I've finally had the opportunity to truly bond with her and get to know her more. I feel completely and totally blessed for what we have. Being at the Ronald McDonald House and in the hospital has shown me that so many people are suffering. We have so much to be thankful for with Hope. I also am remind of the incredible support we have. I look at others that walk through these challenges without the support of their friends and my heart aches for them. We are truly blessed and we want to make sure everyone knows how aware we are of the incredible friends and family that we have.