Day 46 - 1st Nutrionist appt.

Tristan slept a lot better last night, he was only fussy for one hour (4-5:00 am) and his apnea monitor did not go off at all.

We had Tristan's appt. with the nutritionist at 10:30 am this morning. First, Tristan weighs 4.1 and is 18 inches long - that means he is almost back to his birth weight AND he has grown 1 1/2 inches, we are so excited! We are also going to change his formula from ProSobee to Nutramigen and work towards increasing his calorie intake to gain more weight. Second, I know this is repeating myself from yesterday and Monday but I have to share that again the Lord put another person in our path for Tristan's medical care. She was just as sweet, positive and optimistic as the cardiologist and speech therapist. At all 3 of these appts. we have felt so encouraged and never rushed. The rushed part is a big thing because as we all know at doctor's appts you can feel like you are "just another patient, just another name, your in/your out". I can honestly say that at no time during all 3 of these appts have we felt like this. You know, with Tanner and Tayden, it's okay to feel like your in/out (actually it's good to feel like that with them because who has time to just sit right? there's always a list of things to do) but with Tristan I do not want it to be that way! I want to feel like the doctors really do care about him and his well-being and that they are actively pursuing his health issues not looking at him as a statistic and thinking "he is already considered incompatible with life so why try to pursue anything". Fortunately, I have not personally experienced this but this was a fear of mine as I have spoken with several T-18 moms and have read 100's of stories on the Internet knowing this is how many doctors are and some parents have traveled to different states to get help, oh I am so thankful the Lord is opening up doors with sweet, helpful and concerned doctors here in Jacksonville. All 3 of these specialists have said, "we need to start now, we need to get Tristan caught up, we need to work with him so that when the time comes for surgeries he'll be strong and healthy and ahead of the game, not trying to play catch up" - Wow, not what we were EVER expecting to hear from any doctor!!!

So, that's why all the appts. We are trying to make good health decisions for Tristan so that if he does live a little while we are already headed in that direction and if the Lord chooses to take him earlier then at least as Tristan's mom and dad we will know in our hearts we did everything we felt the Lord was leading us to do. Also, please realize that although our pregnancy journey is over and our precious little boy is still with us on Day 46, we are still on this T-18 road. Every day we are faced with new and different issues. There are moments we forget about this disease because we feel like a normal family of 5, but then there are moments we are faced with reality again which can cause it to be very emotional at times.

Please pray for us as a family to continue being strong and to continue feeling the peace we feel, for Tristan's continued strength, please pray for the 2 heart meds to work and for us as we face another new day tomorrow.