Mar 31, 2016 Latest post:
May 28, 2016
Stefyn was born with Gastritis with only 21 cm of large/small complete intestines. Oct 18th he was born only a day early of being 37 weeks. Weight was 6lbs 3 oz. The surgeon came out and let us know that there is hope but there is a long road ahead of us. His new diagnosis is Short Gut Bowel syndrome. So to the NICU for a week and Stefyn was stable so off to the ICC which little did we know would become our new home. With in 8 days Stefyn pick line became infected twice so the only other option was to put in his Brovic catheter. Which has been a blessing. With all the blood draws his little feet would have never wanted to stand!. The nurses are so amazing got us a window room with in the first month being there which REALLY helped. Stefyn seemed to have issues anytime the feeding of the micro lipids. To much out put though his ileostomy bag. Which then caused a good 3 weeks of constant bag changes. His little skin held up amazingly. and found the right supplies. Again tried with the feedings still no luck. So a few test were done to see what might be going on inside. Test didn't show to much but Kathy his amazing Dietitian noticed that the flow would work slower on the right side then laying on the left. Though this all his blood count was low and concern of a blood transfusion taking place was a nerve wreaking experience. Time went by and after so many efrian shots the count would go up and down but no talk of transfusion any more. Well the decussion of home came up which got the surgeon thinking about the take down which normally doesn't take place until 6 months old and Stefyn is 3 months. So plans in motion Jan 13th he had surgery which went amazing and the doctor is so proud of how well Stefyn is doing. He has a 15% of ever getting off TPN but my baby is growing and looking amazing.
The thought of home seemed to be so exciting that once the work to actually getting there kicked in I felt quite overwhelmed. A phone call from lindsay Stefyn cares manager in the hosptial on a work day after noon. And with in a week he would be home! To say bye to everyone was very emotional and inspiring. Yet everyone had such great hope and beliefs that everything would be alright.