Wednesday, January 23, 2008

Day 52 - God will direct us

Tristan had another great night sleep. His apnea monitor didn't go off and his color did not change. Today we were off to an early start for Tristan's 2nd appt. with the cardiologist at 8:00 am. At the appt. last week, we had heart tests performed and found out that the hole in Tristan's heart was much larger than we were told back in August from the high-risk doctors. It completely took us by surprise so we couldn't think about much more than that, however we've had a week to watch Tristan and think about questions for the cardiologist so today we went in with a long list. Let me say again, the Lord absolutely picked this cardiologist for us! She is so sweet, very understanding of our situation, sees Tristan has a heart patient and is willing to operate regardless of the T-18 and she is definitely a go-getter. Her office was on the phone contacting our pediatrician about scheduling appts. with 2 other doctors before we even left the office. Basically, this is where we are right now with Tristan's health concerns:

Tristan's reflux: Tristan is having an Upper GI test done next week to assess his stomach to confirm that he is having reflux and to make sure his stomach is not twisted. If it is not twisted then another kind of reflux medicine will be prescribed, the Zantac is not working.

Tristan's 2 hernias: One is small and one is very large. The cardiologist is concerned that it would turn blue, rupture, cause a lot of pain, infection would set in and he would pass away due to this problem alone, so she is referring us to a Ped-surgeon.

Tristan's feeding tube: Tristan's ability to suck/swallow is going very slow, infact because his little heart is beating so hard he doesn't even take his pacifier anymore, it's too much effort for him. The cardiologist wants us to hold off on the speech therapy appts until Tristan gets a little stronger. The cardiologist would like a G tube to be put in at the same time as the hernia surgery, if we opt to do the surgery, as the OG tube will become an irritant to Tristan's throat which will cause him pain.

Tristan's heart: He has a very large VSD hole. The cardiologist will keep him on the same heart medicine, just up the dose to 2 xs a day, hoping this will work until he is strong enough to have a band put around his artery which would allow the blood to flow the right direction and then we would not need to have invasive heart surgery.

Tristan's color change: This is the oxygen saturation levels going back and forth so when they drop his color changes to gray/blue. The doctor said this will continue to happen until the heart band surgery is done.

Tristan's weight: Good news - he gained 2 more ounces!!!!! He is now at 4 lbs. 3 oz., only one more oz. until he's back at his birth weight. The nutritionist has upped his formula intake now to 24 ml but will slowly up it to 27 ml by next Wednesday.


As you can see from above, after the appts next week we may need to make decisions about having the hernias repaired and if that is done the surgeon would also do the G tube surgery at the same time. When we were pregnant we had to make some very difficult decisions prior to Tristan's birth as to what we wanted medically done, this was so hard I mean how do you chose medical procedures that may or may not save your baby? We made the decisions we felt the Lord led us to make and he has allowed Tristan to live and we have been blessed with the sweetest 52 days! Now, here we are possibly facing more medical decisions for Tristan. The decision to have surgeries would mean he would be under anesthesia and be required to stay in the hospital for a few days. First, I'm scared about the anesthesia part because my heart is crying "what if we do this and he doesn't make it, I want him in my arms when he passes away not in an OR without me" and second, I do not want him to stay in the hospital, I want him in his bassinet right next to my side of the bed so I can hold his little hand all night, like I always do. I realized how fortunate we have been with our other 2 boys because we've never had to be in a hospital so the idea of a hospital stay for my precious little boy who is already so fragile concerns me, scares me, worries me, etc. We will meet with the surgeon next week and my prayer is that the hernias are not so bad that they require surgery, however at the same time I do not want to put ourselves in a situation where it's not scheduled surgery and the hernia ruptures and we have to go to the emergency room and have unscheduled surgery with a doctor we do not know - herein lies the dilemma. Since we found out Tristan had T-18 in August we have felt the Lord 's hand on our lives, on our family and our precious little boy in a very real way and we know that He will continue to direct/guide us in every decision we will need to make in the upcoming days.

Please pray for Tristan's strength, please pray for us as we attend the appts. next week, please pray that the Lord's direction will be evidently clear to us and please pray for us as we face another new day tomorrow.

Psalm 37:23-24 says: "If the Lord delights in a mans ways, he makes his steps firm; though he stumble, he will not fall, for the Lord upholds him with his hand."

Proverbs 16:9 says: "In his heart a man plans his course, but the Lord determines(directs) his steps."
  • God will direct us through His Word: Colossians 3:16 says: "Let the word of Christ dwell in you richly in all wisdom."
  • God will direct us through prayer and listening: John 10:27 says: "My sheep listen to my voice, I know them and they follow me." and Isaiah 30:21 says: "Whether you turn right or to the left, your ears will hear a voice behind you, saying This is the way; walk in it."
  • God will direct us through seeking wise counsel: Hebrews 13:7 says: "Remember your leaders who spoke the word of God to you. Consider the outcome of their way of life and imitate their faith." and Proverbs 12:15 says: "The way of a fool seems right to him, but a wise man listens to advice."

23 comments:

Mary in TN said...

These are huge decisions to make for any baby, but especially for Tristan. But I am so glad to have these things to pray about for him!

God Bless!
Mary in TN

Anonymous said...

I am praying that God would give you wisdom and direction and that He would give Tristan strength.

Anonymous said...

I had to reread that one! That is a lot of information to digest for any parent especially with a baby so precious as Tristan. I am praying for wisdom for you both!

Michelle

Anonymous said...

PRAYING FOR YOUR FAMILY! LOT'S OF TOUGH DECISIONS TO MAKE BUT WITH YOUR FAITH IN THE LORD YOU WILL MAKE THE RIGHT DECISIONS! GOD BLESS! WHAT A GREAT FAMILY YOU HAVE WITH A VERY SPECIAL ADDITION!!!!! PRAYING!

Anonymous said...

PRAYING! THINKING AND PRAYING FOR YOUR FAMILY AS YOU MAKE THESE TOUGH DECISIONS! WITH YOUR TRUE FAITH IN THE LORD I KNOW YOU WILL MAKE THE RIGHT DECISIONS! WHAT A WONDERFUL FAMILY YOU HAVE WITH A VERY SPECIAL NEW ADDITION! PRAYING

Anonymous said...

PRAYING

Laurie said...

Praying and knowing that God will go before you in each and every decision that you will need to make. Asking Him to pour out His peace on all of you and to give you the wisdom you need in making these tough decisions.

Laurie in Ca.

Anonymous said...

Lord show them a clear direction for the treatment of Tristan's ailments. Thank you for 52 days and counting with sweet Tristan.

Mommy Mel said...

Wow what an incredible miracle your Tristan is, and your family's journey is inspiring!!! I came upon your blog through a series of other blogs last night and read all the postings, I have been tremendously blessed by this story. Please know you have a new family praying for your family!!

Anonymous said...

With the rising cost of your medical bills, is there a website setup for donations for Tristan and your family. I know prayers are needed foremost but was also wanting to know if financial aid was setup.

Kim (marygracesummons.blogspot.com) said...

Yvette,
My oh my. It all sounds so overwhelming but your faith WILL get you through this and God will direct it all - just let him like you have been. I will be praying for clarity and peace for all of you.
Love you,
Kim

lucyimhome623 said...

Yvette & Trayc,
I cannot wait every night to read about Tristan and how he is progressing. You have some monumental decisions to make and I'll be praying for you. As you are so aware, the Lord hasn't let you down yet and I really feel blessed by some of the scriptures you have shared. They have actually helped me, so your blog has a two fold purpose-prayers for Tristan and help for some of us that just need that special scripture for the day!

Love,
Margaret Dixon

Julie said...

I've been following your blog for a few days now, and am just so glad to read how you a trusting God in this situation. I know it must be hard sometimes, but you are doing the right thing in seeking comfort in the Lord and taking each day as it comes and being thankful for whatever time you get with Tristan. Keeping your family in my prayers.

Anonymous said...

Your right, those are alot of decisions to make. I will pray for the Lord to give you peace about the right decision. You and your family have amazing faith that glorifies the Lord and I am sure He will lead you in the right direction.

Jesse's girl said...

Decisions right now can seem so scary, but always remember, regardless of oucome, that God knows the number of Tristan's days. As far as He is concerned, the decisions are already made...you just have to follow His lead, and then trust His perfect plan and timing. (Easier said than done, right?) I will be praying for clarity beyond measure, and a peace that could only come from Him.

Snuggle Tristan extra close tonight, and soak up the sweetness of this blessing you have been given. :)

Anonymous said...

Our thoughts and prayers are with you.
Carrie, Michael and Stephen

Kenzie Stanfield said...

Yvette-

Thank you so much for getting the "word out" to the girls when we were going to the hospital! Thank you for your constant prayers and the special time that you had with your family for us. We have felt each and every prayer and know with certainty that the time the Lord allowed for us with Maddox was exactly as He planned. Please continue to pray for us, especially Deacon as he knows something is going on, but obviously can't quite figure out what it is.

Know that we are praying for all the specifics for Tristan and we are so thankful for another sweet doctor in your path.

Love you so much and thank you!
Kenzie

Anonymous said...

Praise God for his promises to guide and direct us. He will make it clear to you and give you peace every step of the way. Thank you for this blog ... for opening your heart to complete strangers ... I have fallen in love with Tristan and find myself praying for him (and you) all through the day.

Grace and peace,
Lindsey Kate

Cathy said...

Praying that God will hold your family in the palm of His hand as you make these decisions. God and You have made all the right decision so far and I know with your faith and trust you will continue.
Cathy & Annabel

The Magana family said...

We will keep praying for Tristan's strength, for you to continue to listen and be aware of God's voice. We have the confidence that He will lead you according to His miracles ways and desires.
God bless your precious and wonderful family of 5!!!
The Magana family
St. Augustine, fl

Anonymous said...

You don't know me, but your family has been in my prayers. My daughter (who is now 4) was on tube feedings for over a year. I'd like to direct you to this online support group. These ladies have so much information and are such a great support system. http://www.cafemom.com/group/24559
Best of luck to you. Your mommy instinct and God's voice will lead you to the right things to do for your sweet boy.
Lisa Fordyce
lisafdoula@yahoo.com

Emily said...

What a lot for your heart to endure! I am praying for your wisdom, your peace, your ability to stay right here in this moment with Tristan and leave all the rest to God. You know He'll supply the grace you need when the time comes. Praying for your family's tenacity and protection through this battle and for sweet Tristan's comfort and happiness. :)

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