Hi everyone! I logged in this morning and was stunned to see that I haven't posted anything since 9/21. Time got away from me!! Sorry about that. We took a trip to Destin, Florida last week and had a WONDERFUL time playing in the waves and digging in the sand. Liam enjoyed the trip, too. He enjoyed taking naps on the beach under the umbrella while everyone else played. I'll post some new pictures as soon as I can.
Liam repeated the swallow study yesterday. We were really disappointed with the results, which showed he continues to aspirate fluid into his lungs. The speech therapist said he will have to continue with the NG tube feedings for another 8 weeks. They don't want to subject him to more radiation by testing him sooner than that (Liam has had a ton of X-rays already in his short life). She indicated that 90% of cardiac babies' feeding issues resolve on their own. He did seem to be able to drink longer before he aspirated this time, which is good. He sucks to rapidly and vigorously and gets overwhelmed with the fluid, so we are supposed to start giving him 5 mL of fluid by mouth one time per day and work with him in a specific way (I won't bore you with the details) to try to get him to slow down. We were also given permission to breast feed him twice a day for 5 minutes each time just to try to ease the transition to breast feeding, which will hopefully happen in 8 weeks.
Yesterday was a rough day, because we were so hopeful that Liam could come off the tube. Emotionally, it continues to be very difficult to constantly have to retape his tube to his cheek and put the tube down his nose and throat when it comes out. We know he finds the entire process irritating, as well. Add to that the entire pumping process for me, and you can well imagine how sick and tired we are of "feeding issues," regardless of how common they are with cardiac babies.
After the test, I was feeling the need for a spiritual uplift, so I went to a Christian bookstore to poke around. I just happened to open a book to the story about Jesus healing the blind man:
"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (John 9:1-3)
Funny how God reminds us of things at the most opportune moments...
In Christ,
Bill and Lisa
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6 comments:
So glad you had a wonderful time at the beach. I was hoping you'd have a chance to check in once you got back. I'm sorry the news wasn't what you wanted to hear on the study. Finding that scripture is better than anyone telling you that. You have to be ready to hear what God wants you to hear; his timing is better than ours, even if we don't think so sometimes.
Karen
Bill and Lisa,
Glad to hear you got a vacation! I'm sure you all needed that break. Liam looks content and happy, thanks for sharing the pictures.
Love,
Amy Beisel and Co.
Cant wait to see pictures from your trip... so sorry to hear about Liams feeding issues, I love that scripture, someone showed that to me when I was pregnant, because I felt as if I was "being punished" with this situation for sinning. Keep your chin up, I know you all are going through a "down" time, but know you are loved and thought of daily!
I'm sorry the results weren't what you had hoped they'd be. I'm sure it is all very tiring for you. I'll be praying that things improve in that area. I love the verse you shared. I randomly came across that a while back and it really has meant a lot to me, too. I'm glad you came across it at a time when you needed it.
Lisa,
You will be in my prayers for sustained strength, I can't imagine the stress of an ongoing feeding struggle. Thinking of you and yours,
canada
Lisa
So good to here from you. Sorry about the news, you seem to have a very strong faith and trust in God and I know he will help you through your journey.
I am so glad you got to do something fun. Isn't the ocean and beach just wonderful and relaxing.
We miss you so very much and I check the blog almost every other day to see your updates. My prayers are with you daily. God Bless, take care and we miss you very much..
Mrs. Kathy
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