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."