Tristan had another great night, he slept all night and his apnea monitor only went off once. We were up and off to an early start this morning. We left the house at 7:45 am for Tristan's 9:00 am cardiology appt. where he had a EKG and heart echo. Back in August we were told by the high-risk doctors that the hole in Tristan's heart was a .4, which is very small and that it could possibly close up before birth and every neonatologist that saw Tristan in the hospital said the hole sounded very small. Well, we learned that it is NOT .4, it is .8 so this was very surprising to us. After the tests were performed we met with the Cardiologist, she was a sweet, comforting and very optimistic doctor - we know for sure that the Lord had chosen her (out of all the doctors in that group) just for us! She said that T-18 babies usually have "heart failure" beginning around 6-8 weeks (Tristan is 6 weeks today, she said we made it just in time) so her goal is to stop the process before it gets to that point. She gave us prescriptions for 2 heart medications that Tristan will start tonight and then she is scheduling appts with a nutritionist and speech therapist. The nutritionist would help us change Tristan's diet intake so that he can gain weight faster and the speech therapist would work with Tristan to see if he would be able to suck and swallow from a bottle. She then sent us down the street to the children's hospital for a chest x-ray to see the condition of Tristan's lungs and to make sure there was no infection in them(there was no infection however it did show signs of the beginning of heart failure). It was a very long day, we did not get home until 3:00 pm so needless to say we are a little tired. We ate dinner and are definitely getting to bed early tonight. Please pray for Tristan's strength, please pray for Tristan as he begins the 2 hearts meds tonight, please pray for Trayc and I as we continue to make medical decisions for Tristan and please pray for us as we face another new day tomorrow.
As we attend each appt. of Tristan's in the upcoming days, this will be the verses we will claim:
Proverbs 3:5-6 says: "Trust in the Lord with all of your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight."
Bible notes: Bring your decisions to God in prayer; use the Bible as your guide; and then follow God's leading. He will make your paths straight by both guiding and protecting you.
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11 comments:
Praying for all of you this morning as you love this little boy and for all you requested Yvette. The Lord holds all of you in His arms, close to His heart. May peace and joy be yours today as you rely on Him for your strength day by day. You are a blessing to me.
Laurie in Ca.
My goodness! That's a lot of information in one day.
But it sounds like GOOD information. I'm glad you've found a cardiologist you like, and I'll bet the people she's referred you to are folks with whom she thinks you'll get along with well, too.
Please keep us posted. We'll keep praying.
Rebecca
Praying for you and it sounds like God has blessed you with good doctors and good information, evern though it is alot. I will continue to pray for Tristan's Strenght and growth as well as his adjustment to the mew meds. God has you and your whole family in his hnads. It was great to hear that you and Tanner were able to have some one on one time this past weekend. I know all your boys are special but he is the oldest and before you know it he will be spending more and more time with his friends. Thank you so much for sharing your walk with us and also keeping us updated on Mary Grace.
Yvette-
I was praying a lot for y'all yesterday... I'm so thankful that the cardiologist was good and very helpful. Hopefully the interventions she advised will help prevent some complications down the road. We continue to pray for y'all and the time that the Lord has for Tristan~ he is doing so wonderfully!
Love and praying,
Kenzie
Praying for you and rejoicing in another day with Tristan and some good advice and help from the dr!
Thank you for sharing your family with us! I am so glad you are getting some time with Tanner. He sounds like such an amazing young man. You are blessed with wonderful children!
Michelle
What a huge praise! i know that has got to be a lot to take in. Praying for you all...
jen in al
Praise God for your wonderful doctor! I pray that Tristan's new meds will raise his quality of life and help preserve him from pain. I pray he continues to grow and fill out and get chubby and gorgeous! :)
yvette-
I found your blog through
Boothe Farleys. She lives in our area and a group of friends and I have been spending time praying for her family. Well I have since been able to explore this amazing world of these super human parents of T-18 babies. You know what you have in common? No, it is not the children it is your umwaivering faith. I stand in awe.
Although not the mother of a sick child I was the aunt of a very sick child. My nephew Hartley, was born with Total Anomalous Pulmonary Veinous Connection and developed PPH (pulmonary hypertension). His life was only 9 months and all spent in Vanderbilt Childrens yet he affected EVERY life he touched. I am sure Tristan is the same way. People are drawn to him and to you. They see strength in you with out understanding where it comes from. You are truly an example. Tristan is so blessed to have been chosen by God to be your baby.
Rachel
Praying for all of you, for the best decision on Tristan's medication, and for God keeping in your heart the strenght, wisdon an confidence in Him as usual.
The Magana family
St. Augustine, Fl
I'm so happy to hear that God gave you a doctor who cares about Tristan's health right now--today--not his diagnosis and the odds. I'm also glad that the Lord gave you peace to pursue further medical care for Tristan. I can't imagine how agonizing every decision must be (even down to whether or not to buy him new clothes!)You guys are amazing and an incredible testimony of how God can carry us through dark, dark times. May the Lord continue to give you many more good days and nights with Tristan.
Praying for all of you...
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