We are so happy to report GOOD news!! The hole in Liam's heart has started to close, going from "moderate" to "small" in the past 2 months. His coarc repair continues to hold steady, and the narrow area in his aortic arch that they have been monitoring has widened. The bicuspid valve is functioning just fine for now, and the small area of his heart that they have been watching (subaortic something or other) is continuing to grow. The gradients looked good, and the pressures in his lungs were good. His blood pressures on all four extremeties were fine. So, all things considered, things are looking fantastic in his heart for the time being. We don't have to see the cardiologist again until March '08.
The only concern Dr. Liske expressed was the low weight gain. We go for another swallow study next Wednesday. It sure would be nice to be able to feed Liam like healthy babies are fed!!
Please pray that Liam is not aspirating any more when they do the swallow study next week, and don't forget to send up many, many prayers of thanks and praise to God for the healing we've seen in Liam's heart so far!
Happy Halloween! We'll post our pumpkin patch photos and pics from Halloween ASAP...
In Christ,
Bill and Lisa
Wednesday, October 31, 2007
Saturday, October 27, 2007
Drumroll, please!
The long-awaited Oct 31 echocardiogram is almost here. We would appreciate all your prayers for our little Jelly Bean this week as we get a birds-eye view of what's going on with his heart right now. Please pray that the coarc repair is holding steady, the valve looks good, and (most importantly) that the ASD (fancy term for hole in his heart) is closing.
We continue to battle feeding issues, and were able to get a swallow study set for Nov 7 to see if there has been any improvement. You have no idea how happy we would be to see Liam free of his NG tube. We're starting to see the long-term effects of him being dependent on an NG tube for so long, and we really want to get rid of it as soon as possible.
The new pics above (and sorry for the text problems) are Liam on the beach in Florida, hanging out with his ever-present paci, and Liam getting warm after a bath this past week.
We continue to battle feeding issues, and were able to get a swallow study set for Nov 7 to see if there has been any improvement. You have no idea how happy we would be to see Liam free of his NG tube. We're starting to see the long-term effects of him being dependent on an NG tube for so long, and we really want to get rid of it as soon as possible.
The new pics above (and sorry for the text problems) are Liam on the beach in Florida, hanging out with his ever-present paci, and Liam getting warm after a bath this past week.
In Christ,
Bill and Lisa
Tuesday, October 9, 2007
Swallow study results from yesterday...
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
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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