So where we left off last we were asking for prayer on Monday for several tests and also for a meeting that we were having with all of the doctors. We will start with the test results. He was getting another EEG to see if the seizure activity had stopped as his medication levels were (are) pretty high, and nearing the limits of what they would let him get up to. Unfortunately, the seizure activity is still present. They have confirmed that he is still having seizure activity, the EEG report apparently looked essentially the same as the one prior, so the increased dose does not appear to have helped. With that said, Thatcher is not having very many physical symptoms of the seizures, the seizures seem to be essentially happening 'behind the scenes'. The other tests outside of standard labs and bloodwork were tests of Thatcher's ability to hear and see. For the hearing test they use some sort of sound stimulation through headphones that were way too big while watching his brain activity. The idea is that if he hears it there will be some sort of neurological response. The vision exam was the same idea, they put goggles on him that had LED lights on the inside that flash and they monitor his brain activity. Honestly, for someone who already has seizure activity, this seems like a really bad test to run. We didn't know what it was before they did it, unfortunately. Those test results (both hearing and vision) seem to have been lost, we have not heard any results from these at this time. We have talked about it, and honestly, these test results won't change anything, it won't change his treatment, and it won't change the way we will love and care for him. Whether or not he can see or hear is irrelevant as we have a beautiful baby boy with us who we will love with everything that we have, and we pray that God will teach us to love Thatcher as He loves.
Now for the "conference" that we had. We spoke with the doctors that morning as we do every morning and we talked about what was going to be discussed at this conference and we were assured it was simply going to be a recap of what to expect in the coming week (which has now passed...). We joked about no bad news and that they had to give us several pieces of positive information about Thatcher and his progress before we really began. The conference included all of the doctors we have been working with, the nurse practitioner, our nurse for the day, a CAPS representitive, and a social worker. In all there were 8 of us in there. We talked briefly about how we thought Thatcher's progress was and we let them know that we were comfortable with the progress he was making, that our expectations were that we would take one step forward and thirteen back, and that our goal was not to just take him home as quickly as possible, but to be patient and get him the best care possible, and to get him home in the best state possible. We had begun to feel as if they were trying to rush us home, and force us to make decisions sort of preemptively, so we wanted to clarify this. After that we talked about what to expect in the coming week, and basically what we were told to expect was a calm week where we would continue the treatment we were doing. Seizure medications, less tests for the rest of the week, and really just wait for test results that we had already done. Then the meeting took a turn for the worse. The palliative care representative seemed to think it was imperative to discuss "Plan B". By this she meant that if the treatments we were doing didn't work very well, "How far will you go to treat your baby?". Well, obviously we will do anything and everything to give him the best chance possible to succeed at life, so whitney responded with something along the lines of, "We will do everything we can for Thatcher, and as we are not at that stage yet, i don't believe we are ready to answer these types of questions, besides, it has been our prayer that decisions like these would be taken out of our hands, we are not comfortable making that kind of decision so we have prayed that God would make it for us, or make it abundantly clear what we are to do, but at this point, we are not ready to make any decision around that." So the palliative care representative responds with, "Ok, well, what is that point? At what point would you be ready to make that decision? You need to think about what is best for Thatcher, and not be selfish about his care or how far you are willing to go...", obviously at this point, a little frustrated that we are still talking about it, we responded with something along the lines of, "well, we are not there yet, and we will not be making any decisions today. As we mentioned, we are praying, trusting and believing, that these decisions will be taken out of our hands." Assuming that this portion of our conversation was over and done with, we then listened to Dr. L begin to discuss some of the Plan B options, and how what "creative" ways she thinks we may be able to take him home. Then for the first time, she threw out on the table, "Well, we can have him on a home ventilator for the remainder of his short life, however long that will be" (i am paraphrasing, but that was her point). For the first time a doctor went ahead and said out loud that Thatcher's life will be extremely limited in duration. Dr. L was extremely emotional as well, and it was very apparent that she cares for Thatcher and also for us. You could hear it in her voice and see it in her eyes that it truly hurt her to say these things out loud. She even commented on the love she was able to see that we have for Thatcher. However, at this point, we were obviously emotional that a doctor had at this point limited our son's life to a very short amount of time, and she seemed to be at a loss for what to do, so the "conference" just sort of ended awkwardly, and what was supposed to be a 20 minute quick catch up had turned into an hour and a half talk about how limited our son is, and what we wanted to do about it. In the end, they all said that Thatcher would never be able to survive off of a ventilator, and they wanted to come up with creative solutions as to how to get him home with us for the short amount of time that he may have. Not what we had expected, or been told to expect. Nevertheless, Thatcher wasn't listening, and God certainly isn't limited by what the doctor's say, but more on that later. Later that night as we were talking about the "conference" this is what Whitney said:
That was all on Monday, the following day Thatcher had an MRI of his brain stem, Dr. L was concerned that perhaps his brain stem had been damaged as well, because up to this point we had only gotten a clear picture of the cortex, the upper portion of his brain that controls "higher level" skills. She was thinking that the stem may be damaged as well, and that could be causing his breathing difficulties. So Thatcher was transported off for his 2nd MRI within 2 weeks of life. We got the results back later that day and Dr. L stopped by to deliver them herself. She somberly let us know that Thatcher's brain stem is in tact, that there doesn't appear to be any level of debilitating damage to his brain stem. Whitney said, "Well, Dr. L, you don't seem to excited about that..." And Dr. L responded with, "I am glad that there was not damage, but remember how I said that baby's are like onions? I guess, I'm just running out of layers to peel back, and I can't seem to find the answer yet..." So we let her know that we are very glad that the MRI came back showing no damage. To us, this is just more proof that God is in control, the best in the world can't figure Thatcher out, that's because God is beyond our comprehension, we may never find an answer or a reason why this happened, and that's just fine with us, we trust that God is in control as He has proved time and time again.You ask for a timeline, we don’t know, we are fervently praying that God is going to heal our child, and we are not to say what kind of healing that is, it may be that He heals him one morning, it may be that it is a slow progression, or it may be that He may heal him fully and completely by taking him home. We don’t know what that looks like and we are not asking you to tell us what that looks like, but we are praying fervently every day all day. Right now, we are being told to wait, “Not Yet”, and we don’t know what we are waiting on, but that is what we are going to do. When we feel like we are being told something else we will let you know. We are not just saying that to buy time, we’re saying that because we fully believe in the power of God, and know that He doesn’t work on our timeline or on your timeline; He has His own, and as hard as it is to follow when it doesn’t make sense to us (like right now), we are going to trust and follow where we feel that He is leading us.
Ultimately that is what matters; that we remain in His will with anything and everything. So whether that means letting our little boy go, or holding firm when we feel pressured, oppression from every side, from every doctor, from every person that we talk to. But for right now, we are being told to wait.
That was Monday and Tuesday, Wednesday was pretty uneventful, just the normal ups and downs of any given day in the NICU. Now we're on to Thursday, this started off to be just like any other day, and was as restful as any day in the NICU would be, we had few "Desats" (Where his blood oxygen level drops), and we kept our breathing rate up for the most part. His heart rate stayed strong and he continued to handle his feedings. Then around 5:45, as we were prepping for his feeding at 6 pm, things took a huge turn, and drastically changed... We will post separately about this and where we are now as this post is getting extremely long! But God is at work and is answering prayer, and has Thatcher in His hands. God is able, and God is in control. We will be thankful and trust in Him.
Thank you all so much for your continued prayer and support, we truly appreciate it, and we can not say thank you enough. God is continuing to use the church to teach us, provide encouragement, strength, and to glorify Himself in our lives. Thank you to everyone who has prayed for or over Thatcher, we believe God is telling us to wait, and we believe God is beginning to reveal what we are waiting on, as He shows His strength, power, grace, might, mercy, and love. He is answering prayers, and providing His presence and peace. God is so good, and if He says to wait, we will wait.
Please join us in praising our God who is so much bigger than anything we could ever imagine, a God who is victorious over every enemy, a God who has already won. Our God, the author of Thatcher's story, who can not be surprised and who will be glorified in all the earth. God is so good, thank Him for today, thank Him for His mercies, thank Him for who He is.
Lord, we love You, we trust You, and we thank You. We continue to lift up Thatcher Caleb, Your servant, Your child, our son and our blessing up to you. We know you can heal him, Lord, and we ask that you would awaken Your Holy Spirit within him, that you would arouse Your Spirit to move in Thatcher's body, that it would move through every part of him, and through Your perfection, and your power, and your grace, that you would heal Thatcher, Lord. We trust you, we know you are able, and we ask you to heal Thatcher. May Your name be praised, may You be glorified. In the powerful and holy name of Jesus we pray. Amen.