“What shall we then say to these things? If God be for us, who can be against us?
He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?
Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?
Nay, in all these things we are more than conquerors through him that loved us.
For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”
Romans 8 (selected verses of 31-39)
Jonah had a really rough night last night. His blood pressure and oxygen fluctuated throughout most of the night. The night nurse also noticed a dark spot on his abdomen and when they flushed it out they removed quite a bit of bile. She was worried that he might be septic when I called this morning or in other words that he may be developing an infection. Mid-morning the doctor determined that instead of continuing antibiotics they would stop treatment and start blood work to try and determine what the real issue is. Both boys have been on antibiotics basically since birth and his real worry is having drug resistance issues with the boys, it also makes it much more difficult to really determine what issues are going on as it becomes confusing to determine a problem when they are taking so much medications.
The morning nurse who measured Jonah's head today measured 3/4's centimeter of growth, this of course worried Shane and I but it seems a bit off compared to previous days. It isn't an exact science, this measure of growth, as each nurse estimates the largest area to measure and Shane just felt that it seemed unrealistic to have such a difference in a day. Even the nurses have expressed that this is very subjective. "Dr. Doom" determined he needed to meet with us at 6:00 and spent the afternoon calling around to two of the best children's hospitals in Los Angeles asking about suggestions for next steps, etc. with Jonah. When we did meet, he said the basic consensus was that Jonah is just too small to tolerate surgery at this time. Our course of action will be to continue to monitor his head growth and pray that time will grant us the opportunity to allow him to mature and stabilize. We have no idea of time, the doctor even suggested that the pressure just may stabilize on its own and that whatever damage was down due to bleeding has already happened, at this point we are more worried about managing what has already happened. I have been worrying that every day that the bleed is not addressed his risk for disabilities continues to grow but the actuality is that the damage has been done in the past two weeks.
Another issue the boys face that we spoke with the doctor about tonight is that of perforations occurring in the gut over the next several weeks/months. This is a serious issue that the doctor elaborated in great detail and basically at one point said we would need to discuss what we would do should a serious perforation occur as the survival rate of surgery would only be 50% (and that would depend on the seriousness of the perforation, he said the worst scenarios only provide a few hours of time and a transfer would not even be an option). After surgery, there would be a 90% likelihood of some type of severe disability. He said if he were making the choice he would choose to make the child comfortable and it would be a question of not how to "live" but how to "die" as surgery would be very painful, etc.
I think at this point I literally did not know how even to respond. I cannot even say how many times I have heard this same doctor talk to me about death, dying, and not taking heroic measures to resuscitate. The first time I think I was in so much shock that it took me until I got home to even register what I had been told. This time I was at least able to withstand the initial shock and process my thoughts.
Afterward Shane and I thoroughly discussed that we would never live with ourselves if we chose to not at least take all measures to save our child. I know that having a child with a disability is not a choice for some but I could not allow myself to let my child to die simply because of the high probability of some type of serious disability. I even asked the doctor what he meant by severe disability, did he mean vegetative state? No, he meant the inability to use limbs, blindness, deafness, severe retardation. Ok, I understand. But these children love, they laugh, they interact, they have lives too! How could I say that because of these odds that I don't want my child? It just does not seem to be an option for either Shane or I. Besides, how can I not give God the chance to perform miracles? How can I not trust that he will provide the path that is best by turning things over into his hands? Both Shane and I agree that we would pursue all measures to preserve the life of our child, the only time we would feel differently would be if the chances of survival were less then 5% or if our baby would live in a vegetative state. We are prepared to deal with disabilities as being a very real part of our lives when we bring the boys home, this is just something you have to accept when they are born so premature.
So right now our prayers are directed toward strengthening their bowels and lungs. We cannot tolerate any perforation whatsoever or we will indeed have serious issues on our hands. If our boys are to live then they cannot be faced with this challenge, it is just not an option for their little bodies right now.
If it isn't one issue it really is another. I at least am getting used to the roller coaster ride, or perhaps it is that God is strengthening me--? I am sure it is the latter but sometimes it feels more like shock. I was telling my cousin and close friend that I have had so many out of body experiences lately. You know, the kind where you see yourself standing over your body and thinking, "This isn't really my life...I am not really going through this." I know this is all a part of the "shock" phase of dealing with things and that I just need to hold strong and that I will make it through and make sense of why this trial and challenge at this time in our lives.
Shane gave both boys blessings tonight and blessed them with increased health and strong bowels should it be God's will. For some reason the phrase "in the name of Jesus Christ" kept ringing through my head on the ride home. It comforted me to know that when the brethren of our church offer priesthood blessings it is always done in the name of Christ, the Master of healing and the Master of miracles. All things are possible with the Saviour and that is why I included the verses from Romans. It has always been a favorite scripture of mine and I am reminded of its relevance in this situation. I am so grateful for the gospel, for the perspective it gives me during trials in my life. I am grateful for the faith and hope and the power of love. We love our boys with such tremendous emotion that we could only ever try to preserve their lives and love them in the aftermath no matter their disabilities.
Love, Shane and Michelle