Luke’s throat lacks the strength and coordination to swallow properly, and his sucking muscles are very weak. This combination of weakness creates a Bermuda line segment of sorts which makes bottle feeding particularly hazardous. Because Luke’s throat does not function properly, there exists the possibility that he could aspirate any liquid traveling down his throat.
In order to avoid aspiration, we add thickener to Luke’s formula so it travels more slowly down his throat so he has time to swallow. The thickened formula requires Luke to work harder to suck, thus exhausting him before he can finish his bottle. Whatever formula he doesn’t finish by bottle, we feed him with the pump through the “g-tube” in his stomach.
When feeding Luke, I have a “three strikes” rule. If he coughs or chokes three times, I stop the bottle feeding. Each time he chokes, the danger increases that he may aspirate his formula, which could cause “aspiration pneumonia”.
Additionally, every time Luke chokes or cries, it weakens his throat muscles which results in his breathing to take on a wheezing or hoarse rough/gravel sound. Luke usually recovers from the wheezing by the next day.
Finally, in addition to all the others, Luke has acid-reflux, which often manifests itself in spitting up, which can also result in aspiration pneumonia if he chokes on his own vomit. Feeding him makes my soul very unsettled, but it’s something with which I will eventually become more comfortable and will not panic so easily.
Everyone asks about Mary’s adjustment to Luke. This video speaks for itself.
Can we say a whirlwind of emotions?! After 2 1/2 weeks Luke and I arrived home on Saturday. I felt so foreign in my own home…it’s crazy how being away for a certain amount of time can dull your memories.
At first I was really upset to not be home with my family for Thanksgiving,but after throwing a pity party for myself, I was reminded of the love surrounding Luke and I in Chicago. I cannot say enough about Luke’s foster family…talk about a family witnessing the love of Christ. Looking back on it I am so glad I was able to spend Thanksgiving with the people I am so grateful to for taking such great care of my son.
On the drive home, I was dying with anticipation to see Mary. Our reunion was amazing…that was until she saw daddy holding and cuddling another baby that wasn’t her. She did get jealous at first but it did not last long. She has now made it a hobby to shower him with kisses and hugs. I love our little family of four! Mass on Sunday was a proud moment. At one point Matt was holding both kiddos and he was beaming.
Today I spent cleaning house and organizing Luke’s things. I also drove for the first time in almost 3 weeks…it felt weird. Things are moving right along. Luke is doing really well, Mary is adjusting quickly, and I am growing in experience as a new mother of two!
A new friend created this video. She’s the mother of a son with Prader-Willi Syndrome.
(Music: “Let It Be Me” by Ray Lamontagne)
Yesterday, I as I changed Luke’s clothes, I felt his diaper to see if it needed changing. I peeked inside the back, then felt around the front to “measure” how much fluid it contained. To my surprise, I felt something solid in the front. Luke began to giggle, which became a full-blown laugh when I peeked inside his diaper a second time, only to realize that the mass in his diaper was a permanent member of his anatomy.
After two and a half long weeks, Mikki and Luke returned home to stay. Instead of driving and meeting halfway, then driving all the way back, Mikki, Luke, and I stayed overnight at the luxurious Memphis Downtown Marriott. Then today we finished the drive and arrived home at 3pm.
Mary stayed overnight with my parents, and they arrived at our house shortly after we did. Mary didn’t know how to process her emotions. Her face kinda scrunched and she looked conflicted, but she clung/clinged/clang to Mikki for several minutes.
Mary acted jealously toward Luke, and even got a little rough with him. She showed a little affection, but her emotional state overwhelmed her, and she wasn’t able to control herself.
So, a couple of hours after arriving home, we donned our “stupid caps” and decided to venture out to Lowes for a little storage crate and rug shopping. Both kids were exhausted, cranky, and generally sick of everyone, which made the trip fun with a capital…
Anyway, I am the official last man standing for the night, and now I must go.
Good night and thanks for the prayers. Maybe we’ll take pictures soon.
I just receive a call from our agent that we are cleared for Mikki and Luke to return home. They’ll miss Thanksgiving, but they’ll be home Friday.
I can’t wait!