First of all we want to say thank you to everybody that has been praying for our little man. The support has been amazing and we wouldn't be able to do it without the help from all of you. I hope that one day we can pay back everybody that has helped us or pay back through another family in need. I can't imagine not having such an amazing support group. We have had so many people, even people we have never met, offer help and support.......anything from bringing us food to watching Hannah to helping us find an apartment to putting us in touch with people that work at ACH to sending us bible verses/affirmations to praying for him. We thank you from the bottom of our hearts!
We have had a couple of better days and we are so thankful for that. This has been the longest roller coaster ride of my life. Every time we go in to see Evan we find out something new that is wrong. Today we found out that he has a blood clot, which can become a big concern. His kidneys are also still a concern. He has had to have a couple blood transfusions, because they have had to take so much blood for testing. But YES, we have gotten lots of positive news over the last few days and we are clinging on to that. His blood pressure has dropped tremendously, which was a huge concern. They were actually able to wean him off all blood pressure medication today and it has stayed down. This is a huge blessing! They were also able to turn down his heart medication by a little and his vitals did not change. He is still intubated, but they were able to reduce the amount of breaths he is getting and he had to do more of the work himself. He was able to get a little bit of food and now we are waiting for his first big poop. They were also able to take the bili light off meaning his jaundice is under control. These are all huge strides and we thank the Lord for that. I am still so nervous about writing all these things, because of how many ups and downs we have had in the last week. I am praying that the worst is behind us and that we can go only uphill from here. Saturday night was the worst night of my life. We did not know if he was going to make it. He is a fighter and the power of all your prayers is what got him through that night. Every time the phone rings right now my heart sinks, because I am worried it is the hospital calling. We are all very cautiously optimistic. I wish I could be more positive and more optimistic and encouraged, but deep down I am still so scared of what else could happen.
The doctors still don't know what has caused his heart function to be so poor. We have heard many times that "we are just baffled" or "we are puzzled" or "he is a mystery". This makes me very anxious, but as long as he is improving I am fine with that. He is a very special little boy!!!!!! He has tested positive for a couple of things. One was a positive CMV test (rare virus), but after the blood test was repeated it came back negative. His symptoms did not fit this virus, so they feel pretty confident that it was a false positive. He also tested positive for a very very rare metabolic disorder. They are repeating that test as well and we should have the results in a few days.
They are going to do another heart ECHO tomorrow morning and we are all very anxious to see the results. If his heart function has improved they may try to extubate him. Tomorrow is a big day for him, so please continue to pray for him. Last Saturday night after they intubated him they told us that the next 7-10 days are critical and they need to see his heart function improve or otherwise they would need to put him on the transplant list (given that he is a candidate). I am praying that we will not have to go down that route. If they are able to extubate him and it is successful we may be able to hold him soon. Oh, how I am wishing for that. He belongs in my arms and not in a hospital bed.
We believe that we are in the best hands possible here at ACH. The doctors and staff have been wonderful and we are thankful that we have such a great hospital only a short helicopter ride away. Evan has had many visitors from his prior doctors in the NICU downstairs since he has been moved to the CVICU, which has felt very special to us.
My life has changed forever and the world does not look the same to me anymore. Never in my wildest dreams would I have thought something like this could happen to us. This is not how its supposed to be. We are supposed to be home, tired from not getting enough sleep, letting big sister hold Evan, getting ready for newborn pictures and just enjoying our precious baby boy. I am so desperately hoping that we will be able to still experience all of that with Evan. He has to pull through. There is just no other option!
Here is a picture of our sweet little boy before he was moved to the CVICU. Please continue to pray for healing!
Life’s a Beach
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