Day 39 - We have a plan!

Tristan had a great night last night, he slept really well and his apnea monitor only went off once. Tristan had a pretty good today too, except his apnea monitor went off 4 times.

The excitement for today? We officially switched from Hospice comfort care to Hospice palliative care. Weeks prior to Tristan being born we contacted Hospice, explained our story and arranged for them to be the sole care provider for Tristan. We were placed in the comfort care program which basically means we had weekly nurse visits, 24 hr. on-call nurses for questions and they set up the oxygen, apnea monitor and medical supply deliveries. We have been very happy with the program and the nurses have been so sweet and available for us at any time of the day/night, however Trayc and I having been talking and praying for the last 2 weeks regarding Tristan's future medical care.

When I was pregnant we only went to my OB/GYN appts., we never pursued any other specialists like a neonatologist, a cardiologist, a neurologist because our focus at that point was how to get Tristan here alive not sitting in countless appts. with specialists speaking of the "what if's" because we felt like if the Lord allowed Tristan to be with us past his birth then we would have plenty of time to pursue it then. Well here we are on Day 39, so much further than we ever expected and we have NO PLAN!!! To most people that might be okay, they can just change plans and make decisions quickly, well not us. Trayc and I are planners to the extreme - YES, just ask anyone who knows us, we plan for everything even our children's birthday parties and buy decorations 6 months out, it's true, but hey it works for us!!!! So, last Friday I mentioned to Trayc that we were on Day 33 and had no plan, that I felt like as parents we weren't doing anything but sitting home giving Tristan love, food and oxygen and even though we don't want to take any drastic measures, I feel like we need to do something! So we contacted our sweet pediatrician, who is also a very good friend that has walked this journey with us since August 15th, and asked if she would be willing to take over Tristan's care even though this is not her typical kind of patient and she sweetly agreed. Hey, now we have a plan, oh we feel so much better!!!! We do not take her agreeing to help lightly, T-18 can be very complex, there are a lot of issues and lots of information to research but she is willing to do all of this for us, she is just another person the Lord is truly using in our lives at this time. She saw Tristan on Monday and her first step of action was to prescribe liquid Zantac for his reflex so we are hoping this will help with the fussiness. The second step was to order a heart echo. On August 15th (same day they told us about T-18) the doctors saw a .4mm hole in Tristan's heart so we would like to know the size of it now, it's still there because it was heard by the doctor when he was born. And, she is in the process of exploring treatments for the apnea like caffeine, etc. So we are excited to be switching Hospice programs because this means that Tristan has survived so much longer than we expected when we signed up with Hospice in the beginning.

We realize the Lord has all of this in His control and He may choose to take Tristan before any of these plans are fulfilled, however we feel as though the Lord has also given us Tristan as our precious little boy to love, cherish and take care of and by taking care of him we must make sure we are doing everything possible including exploring future medical options. We are praying that the Lord will continue to guide us in ever decision we make regarding Tristan's future care just like when we were pregnant. We have a heart echo scheduled for Monday so please be praying for the appt., please continue to pray for Tristan's strength, please pray that his apnea will decrease and please pray for us as we face another new day tomorrow.

Jeremiah 29:11-12 says: "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plan to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you."

Bible notes: God knows the future, and his plans for us are good and full of hope. As long as God, who knows the future, provides our agenda and goes with us as we fulfill his mission, we can have boundless hope. This does not mean that we will be spared pain, suffering or hardship but that God will see us through to a glorious conclusion.