Thursday, January 17, 2008

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.

11 comments:

Laurie said...

Praying for all that you have asked Yvette, and more. What a blessing it is to read of how God is paving a road of HOPE in the doctors you encounter on this road of uncertainty. He is so good in seeing the future He has planned for Tristan and I really do pray for your strength and peace and joy to remain strong day by day in the blanket of HOPE He is weaving. Bless your day today and enjoy this little miracle.

Love, Laurie in Ca.

* * * For a Fair Deal * * * said...

Someone shared with me about your Tristan, and I am now an prayerful follower of your journey with him. May your strength be found in your joy of the Lord.

Susan in Pensacola, FL

Anonymous said...

I came across your blog through a friend and though we have never met I will continue to pray for your family. It sounds as if you have an amazing family, particularly the amount of understanding that Tanner has had. My oldest two children are 8 years apart and when I was pregnant with my second child I worried they would not have a sibling connection because of the age difference. I am glad I was wrong! It is amazing to me the gifts that the Lord gives us in our children.

Rebecca said...

Yay! I love good news. :)

That new formula is good stuff... expensive, but good. Good for strong bones and healthy bodies.

It's great that he's growing. I'm so pleased.

I'm continuing to pray.

Rebecca

Julie said...

I came to your blog through a series of other blogs, and just wanted to encourage you and your family. I can't imagine what you are going through, but I think it's a beautiful testimony to see how you and your family have continued to look to Christ for comfort and guidance. I pray that you will have just the perfect amount of time with Tristan. Each day, hour, minute is a blessing from God.

KrazyMom said...

That is all such encouraging news! What a great feeling to have dedicated physicians willing to give you the extra attention you deserve with Tristan's medical care! I know you feel so very blessed to be his parents...but I hope you also realize how very blessed he is to have all of you as well! He couldn't have been born into a more caring and loving home. Your family of 5 have touched many hearts by allowing us to follow your journey through your blog.



Praying daily in MI!

Cathy said...

I am thanking the LOrd for all the sweet, helpful doctors that are taking care of Tristan. Obviously God is so in control, and it is so good to hear you are not having to fight for his right to live! I love reading each day and seeing what is in his future. I know there is uncertainty, but what love God is allowing you to recieve thru Tristan. Praying for your strength and peace.
CAthy & Annabel

Shane and Devin said...

That is so encouraging that you are meeting good people who also want the best for Tristan. I will continue to keep you all in prayer....looking forward to reading many more posts, representing many more days for Tristan!

Devin in Illinois

karalyn said...

I'm so glad to hear that you have had such positive experiences with Tristan's appointments.It's wonderful that he is doing so well.
I'm missing the Tristan pictures! He is just so precious and it always puts a smile on my face to see him. You are all in my prayers.

Jeanie said...

Oh- I am beyond excited for you all!! What awesome doctor's reports. God is so Good!

Jeanie

The Lenda's said...

Just wanted to let you know that I have been keeping up with your blog and reading about each day you have been blessed with Tristan in your lives. Thanking God for the wonderful, encouraging doctors He is blessing you with. Hugs to your whole family.