The cardiologist appointment went great! Gavin is progressing well! We just have to watch for swelling/puffiness because Gavin's pulmonary artery was narrowing when he had his last surgery. This is why he may have to have a couple of heart caths in between the second and last surgery. He doesn't need to be continuously monitored anymore but they would like for us to spot check him every once in awhile and while sleeping to keep track of his oxygen levels.
I have several prayer request:
Daric- Another little boy who has HLHS. (We get to meet him next month during the heart walk ;) His mother, Mona and I have been "Internet/phone friends" over the last couple of months. She has been an inspiration to me and continues to encourage me daily. Daric will be having his heart cath April 3rd to prepare for his third surgery May 7th. His little brother may be coming down with something and Mona is trying to keep them separated so that Daric will not get sick. Please pray that Daric will stay healthy in order to keep his scheduled cath/surgery. They will be traveling to Alabama for his third surgery (they live in Kansas) so please pray for their travels too!
Sammy- HLHS Survivor who recently celebrated his FIRST BIRTHDAY! He had a scare the other night and his heart rate dropped into the fifties. His mother, Erika has become my main support. We talked a lot from before Gavin's birth to now. As soon as we learned about Gavin's condition we googled all of the information we could find online and we found her website and lots of families who she has encouraged. Sammy just had a sedated echo. Please pray for his health and that he will continue to progress for his third surgery.
Baby Abby- HLHS Survivor. She was born in December and had her first open heart surgery around Christmas time. She is on continuous oxygen therapy now because her oxygen levels have not been as high as the doctors would like. Here is the latest update from her website:
The oxygen is helping Abby's oxygen levels stay elevated, but they are not as high as they hoped. So now it looks like 4-6 weeks until the Glenn. Every week we can wait gives Abby's lungs a chance to develop further, which increases the chance for her surgery to be successful. It has to do with the amount of pressure in her lungs decreasing as they develop. This will allow the blood to disperse throughout her lungs. If the surgery is performed before that pressure adequately decreases, there is risk for water build-up, both around the lungs and in her brain.We are thinking of it like pre-term labor. Having a baby early isn't good because there are complications, but it is manageable. Every week the baby can wait, the better. The same goes for Abby. Every week we can wait makes a huge difference. Please pray that the oxygen lets her make it at least another month until she needs the next surgery.On a positive note, we are managing the oxygen well at home. Anna is doing fantastic and being such a good girl about the 50 feet of plastic tubing running through the house, as well as leaving the portable tanks alone. We are managing to get out of the house with the portable tanks as the weather has gotten nicer. I got a double stroller which makes it much easier to haul this whole show on the road.
Please pray for Abby and her family. Carrying around a baby along with an oxygen tank and monitors can be very frustrating at times. I cant imagine having to do that everyday. Please pray that Abby's lungs will get better and they will be fully ready for her second surgery.
Max-He was born with bleeding on the brain and his parents were told that he would have many problems and may not survive. His mother is such an amazing Christian woman who is so positive!! Its weird because somehow we found each others blogs and we are connected through family friends. He is now 7 months old and healthy. He has had some tests done lately, please pray for the test results to come back normal. And praise God he is doing so well!!!
Ethan Powell- DIAGNOSIS: LEUKEMIA. He was diagnosed in February at the age of ONE MONTH. Please refer to his website at www.ethanpowell.com to get all of his updates. He is currently in St. Jude's. His father is such an amazing inspiration to those who read their website as I am sure he is to those surrounding him too.
There are many other children who need prayer too, so please remember all of the children out there who are laying in a hospital bed or at home with life threatening disabilities. I never really fathomed the fact that there are people out there who on a daily basis are dealing with such difficult situations until I had Gavin. Adam and I are so blessed because Gavin has progressed amazingly and we thank God for that every single day. So for those of you who have children give them an extra long hug and kiss tonight before tucking them into bed and remember those parents who don't get that privilege.
