Sickness.

Sickness. A few weeks ago the doctors began to tell us that our Malachi was very very sick. He was showing signs of infection, started on antibiotics and multiple tests began to be run. As the days went by he began to get worse. The doctors kept saying "We need you to understand how sick your son is". All the tests came back negative, no infection. Relief for a moment, but then the question; why was he sick? We began to ask the doctors this, "you are saying he is sick, but why?" "all the tests have been negative, why is he sick?" After days of asking this and not getting any solid responses, the chief neonatologist finally sat down with LaRon and I and explained what he meant by sick. He meant that our Malachi is sick in the sense that he was born at 25 weeks, he was sick because not only was he born at 25 weeks but he was born with a blocked bowel, he was sick because not only was he born at 25 weeks with a blocked bowel but that bowel perforated when he was 5 days old. He is sick because he has been on TPN (Total Parenteral Nutrition) since birth. TPN, while life sustaining, is also very damaging to the liver. Now because of the nutrition he needs from the TPN, his liver is sick and failing. Because his liver is sick and failing, because of the TPN, he has developed the bad type (not the normal newborn type) of Jaundice as a result of HIGH direct bilirubin levels, he is orange=yellow [Literally] and the whites of his eye are yellowed. Because he has been on the TPN his bones have not yet mineralized which has lead to a diagnosis of osteopenia. Because of the osteopenia he has endured numerous painful fractures in his legs and arms. Because of all of this his body is working extra hard to try and heal, so he has not yet learned to breathe on his own and is still on a ventilator. My baby is sick. I realized when we were asking the doctors why he was sick, we were looking for them to tell us that he had something specific they could cure with a medicine or treatment. This is not the case for my Malachi, this was what we had to come to terms with. His "sickness" was not something that anything specific could heal. He began to reject his feedings, which are still being done through a tube, so they backed off. He's now at 4mls of breastmilk every hour. A baby his size should be at at least 10. The TPN has not been able to be lowered. We were at a place of complete desperation and reliance on God for a miracle. He had a very rough couple of weeks. He began to have apnea(stopping breathing) and bradycardia(heart rate slowing) episodes. "A's and B's" as they're referred to in the NICU. His were bad. One was really bad, I mean REALLY bad. We got "that" phone call. But he pulled through, he is a fighter. The doctors said he was likely getting tired, tired of the fight and the pain. Then a few settings on his ventilator were adjusted, his doctor decided to try a medication for his liver that they didn't think would work but thought "hey let's give it a shot", and the surgeons started a technique of feeding that is fairly uncommon to try and get him optimal nutrition. He stabilized a bit over the past few days. He has had no "A&B" episodes [PRAISE THE LORD], he has tolerated his feedings well [AND HE POOPED THANKS TO THE TECHNIQUE BEING USED WITH HIM], we also got results of his weekly labs today that some of the liver enzymes have gone down along with the lab that indicates if his bones are healing, tomorrow we will see where his direct bilirubin level is and we are praying that is down as well. He has been scheduled for his [hopefully] final gut surgery on Friday. This surgery will reconnect his intestines so his digestive system will be completely intact. We are prayerful and hopeful this will lead to good nutrition for him...which should lead to his liver healing...and his bones strengthening. I know he is in the best hands, because Jesus holds him so tight.

When we finally accepted our Malachi's 'sickness' for what is was an not something that would be fixed overnight. It began to resonate with me. I think so many people are looking for the quick fix and the quick solution in life to make things better. Instead of going on the long road and fixing all the underlying issues, a lot of people want a one-stop solution. Malachi's journey has taught me to look for the causes of the way I am feeling and to deal with those. Only when we can look deeper into ourselves and begin to heal the cause/roots of our 'sickness' can we be on the road to complete and total healing.