We did our two three day trials, a week apart. During these trials we gave Bricen less tube feeds in an attempt to get him to take more by mouth. When speech therapy was talking to me about these trials I was a little irritated because she kept acting as if I was going to have a hard time with it. I was thinking, what is wrong with these people? What's the big deal? If he does well, great. If he doesn't, we are back where we started. Welll, my tough girl act ended on day two of the first week, after the first attempt to feed by mouth. Bricen was just gagging with every bite or if he did get something down he'd gag later and it would all come back up. So, day two and I am a bawling hot mess. I just wanted Bricen to eat. That's the only way to put it. I pulled myself together and we kept at it. I am happy to say that by day three of the second week Bricen had finished a whole container of baby food in one day. He might turn into a monkey. I'm having a hard time getting anything down him besides banana flavored things but it's a start! I am very encouraged and so excited about his progress. :0)
He is trying cinnamon apple straws here. He loves them. :-)
Well, Bricen waaas saying mama. Then, my husband worked on him one weekend while I was at work and for two weeks I heard nothing but dada. I was less than happy about this. Finally, two weeks later mama has returned. It stills warms my heart each time I hear it. We had a busy few days for the 4th of July. The third Dennis came and had dinner with us. (Tried a new recipe from Pinterest and it was yummy!) That evening Grandma, Karen, Dereck, Tiff and Chelsi came to our house to watch fireworks. Bricen didn't really care about the fireworks and it has been hot hot hot so we came back in early. The 4th we had a swim party with the same people at Brianna's house. We swam, cooked out and swam again that evening. The fifth Brianna and the kids were back in town so we went over and went swimming with them again. Bricen is starting to really enjoy the pool. He kicks his legs in the water and much like the bathtub, likes splashing in the pool.
While Bri and Craig were out of town Daniel was nice enough to take care of a few things for us the day we were to go swimming. He is such a hard worker. We had to take this picture and send it to Brit who was at work at the time. We do have a mean side at times. :0)
He still loves to cuddle with a baby washcloth, or a burp rag. I will admit there has been times that a clean sock was in reach so that's what he snuggled with. Don't tell anyone.
Often, the key to keeping Bricen's feeds down is distraction when he starts to act like he wants to throw up. The full length mirror is our latest distraction. I can't blame him for enjoying staring at himself, I love looking at that handsome face, too. :0)
Brilynn is a huge help to me and Bricen. Bricen absolutely lights up when she comes around. But, hanging the Johnny jumper back up is not Brilynn's cup of tea. hahaha I had to capture the moment.
Daniel, crazy cat that he is, purchased this motorized, rideable cooler on the Internet. Brilynn was giving Bricen a ride around the house on it. I'm pretty sure if he could have Brett would have jumped on the back.
I started this post a few days ago. It is now Tuesday evening (early Wed am). We had two appointments at Riley today. One appointment was with Development Peds and the other with Speech Therapy. These are my two favorite providers!! I can not express how much it means to have providers that I can trust and feel comfortable with. I think it makes a huuuge difference that these two providers have been in similar shoes as myself with their own children. This is a picture of our "outpatient discharge instructions".
#1. "He is gorgeous." Do we really have to wonder why Dr. K is one of my favorite?? Haha.
Dr K is happy with where Bricen is right now. He is 8 months 24 days, corrected age 7 months 17 days. His weight was 6.15kg (roughly 13lb 9 oz), 25 1/4 in long, and head size was 43 1/2cm. She is happy with his development for his corrected age and the health problems he has had. His upper body strength, big muscle skills need some work and we are going to get PT involved to work on that. She was even okay with the weight gain. Big news of my day was that we are going to 6 feeds a day, every four hours. We still have to feed during the night but I'm hoping with going to every four hours feeds (vs. every three hour feeds that take a hr to give) he will puke less. In order to do this we have to add sugar to his formula to make it higher calorie. I always hold my breath when we make changes and pray it doesn't set up back in weight gain and puking (or diarrhea in this case).
Sara, speech therapy...still love her. Since our three day trials went so well we are going to do another couple three day trials with even less tube feeds. In a perfect world (correction, perfect Bricen world) Bricen will do well with those and our three day trials will turn into six day trials and then become our new feeding schedule. Just the possibility of this makes me tear up. I'm hopeful and prayerful. During these trial days...wait for it...we will do our last feed at midnight and the first feed of the day at 8am. Holy Canoli!! After almost nine months of every 3hr feeds, this sounds heavenly to me! Also, the more he eats by mouth, the less he will puke and maybe, just maybe before long we can go places without having to be driven by someone else and me riding in the back of the car with him. I can see a light at the end of the tunnel but more than anything I am so proud of my pumpkin. He still has a ways to go but has come so far. It's a little mentally exhausting as a parent. It's constantly questioning yourself. Is he gagging because he is aspirating or is he gagging because of my technique or is the thickness too thick or not thick enough or is it simply a behavioral gag that needs retrained at this point? My worries are nothing compared to what Bricen has been through. Stay tuned...he will be a chunker eating Doritos with Daddy before we know it.
His new favorite sleeping position. Makes me want to scoop him up!
Quick side note...Dereck and Tiff are looking for houses near Franklin. Woowhoo! Praying and super excited for them and where God will lead their lives in the next year. Faith called Dereck to pastor the church. This will be his first. I am moved to tears when I think of how proud my Grandpa and my mom would have been of Dereck. My mom would have been the "super fan" of the Dereck "fan club." :0)
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