Praying for Miracles
It has been probably one of the most difficult weeks of our entire lives. Both Shane and I have been through so much over these past few days as our critically ill little boys fight to survive and overcome all the challenges that they face.
We found out today that Jonah has developed an infection. They started him on three types of antibiotics to ensure that every possible problem will be treated. We are waiting until next Tuesday to find out exactly what caused the infection. We are praying the medications are affective today and tomorrow as the infection could become very serious. Today, Saturday, the doctor told us that Jonah is the most critical of the two boys and that we now face many decisions with his bleeding on the brain. Only a true miracle can help our baby boy overcome and hopefully be a normal, happy boy without disabilities at this point.
Wednesday is when we first found out about Jonah's increase in bleeding in his brain. The doctor informed us that the bleeding had become significant and reached a Level 4 of 4 and that they expect he will have long term disabilities that could range from Autism, Cerebral Palsy to something mild like ADD or other learning disorder. There is still a small chance that the bleed will resolve and he will be unaffected. Of course we pray fervently every day that God will grant us a normal, healthy boy in the end but the doctors want more that we be prepared for the absolute worst of scenarios.
Our focus now is to hope that the bleed will be absorbed without complications back into the body. If not, another challenge we face is that of Jonah needing a shunt to assist with this if his body is unable to manage it on his own. The shunt will also be life long and there will be constant surgeries throughout his life to maintain, replace the shunt, etc.
We hope to keep both Noah and Jonah together as any serious surgery will require either to be transferred to Fresno, Cedar Sinai or UCLA. We hope we will not deal with this trial in addition to everything else that is ongoing.
Both babies have heart problems, specifically with that of the still open PDA valve. Normally when a child is born the PDA (an extra valve below the heart) shuts on its own but with micro-premies/premies the valve almost always remains open. Noah has been stable enough to receive the standard medication that causes the valve to shut but with Jonah's bleeding they cannot administer the medication as it will worsen his situation. So right now Jonah could face up to at least two surgeries, one possibly to insert a shunt to help with the bleeding and the second to shut the PDA.
We have received an overwhelming amount of phone calls, prayers, asks for service, etc. Right now we are doing ok and our immediate families have been in town to offer support, etc. Shane has taken this month off as he is getting ready to start a new job in November and therefore cashed out his month's worth of vacation at his old job.
Both babies have received priesthood blessings, Jonah was able to be administered to with oil. Noah earlier this week was not very stable so we haven't been able to touch him much but Jonah was doing well enough that my father and Shane were able to anoint his tiny head and provide him with a blessing. My father has reminded me of this over the past couple of days as we have undergone the difficult news of how critical Jonah really is.
Noah has been doing fairly well and yesterday (Friday) the nurse allowed me to help change his tiny diaper. We also gave him the smallest pacifier you ever saw to suck on (he loves sucking on his respirator tube) and he took right to it and curled his little hands around it and seemed to be really comforted by the tiny thing. Jonah on the other hand spit it right out! How funny to see their little individual personalities developing.
Already we can tell that Noah loves being touched while Jonah does not like to be moved, touched or done much to, of course I often wonder if that is due to his not feeling well most of the time. We figure Noah may enjoy cuddling more than Jonah and Jonah just may be our independent spirit.
Both babies are perfect and beautiful. It truly is amazing, even at this age how perfect their little hands and feet are. 5 toes, 5 fingers.....all with tiny little nails. They are truly little blessings straight from above and our love for them is tremendous. In fact that is perhaps the hardest part is to look down at their tiny bodies and not be able to hold them and comfort them through this difficult time.
I will try and keep this blog updated as much as possible as many of you would like to know what's going on.
Thank you again for your love, support and prayers. We believe in miracles and we know with your faith, prayers and support anything is possible. In fact, maybe by coincidence but to me it was a small reminder of God's love, Jonah's name tag that hangs on his incubator has the definition of "miracle" typed above his name. At some very difficult moments I look at that saying and remember that indeed Jonah is being watched over and his birth and survival so far are "extraordinary event(s) manifesting divine intervention in human affairs."
God loves these babies and as I told the nurse today, we have no concept of how much he is with them and how often he whispers comfort to their little spirits.
Love, Shane and Michelle