The Miracle of Isaac

Sitting here today watching my two year old play happily in the bathtub making quacking noises to his duck is something most people take for granted. Isaac may be a bit short for his age and doesn’t talk but with 4 kids that is a blessing. It wasn’t always like this though. It seems like an eternity ago in December ’08 we discovered we would be having another baby. God had blessed us with easy pregnancies and a couple long labors so it wasn’t anything to worry about.

At 13 weeks it all turned into a nightmare. I was miscarrying and as I laid in bed trying to rest I was furious, confused, hurt and determined. I cried and prayed. I prayed that my God, who had blessed us in so many other ways, would bless me again and save my baby. I prayed He would use this pregnancy and this child in his ministry to reach others. That night seemed to go on forever. To our surprise at the Doctors office there was a heartbeat and a sono revealed a clot on the placenta where they believe a second sac holding a twin was attached. We all agreed that I needed to take it easy the rest of the pregnancy.

At 24 weeks (April 28th) Isaac Xavier was born with the tiniest little cry 1lb 4oz and 11 ¾ “ long. Smaller than a baby doll and about the size of a T bone steak. They wrapped him in a warming blanket and rushed him away as soon as he was freed from the water sac, it happened so fast it’s a blurr. They allowed me to go to the NICU on my way to a regular room. He looked so small and fragile in the incubator/pod. His skin was transparent and I could see his spider web like veins. His little fists were smaller than a quarter but he was real and alive. I felt helpless and had so many questions but all I could do was watch and pray. It was going to be a long, hard road.

At 24 hours he was jaundice and they were trying to put off a blood transfusion. At 48 the respiratory therapist was amazed at his lung strength for his age and weight. It was a roller coaster of good and bad and all we could do was live day to day. The hole in his heart wasn’t closing on its own, and medication wasn’t helping so this meant surgery. In the first week there was so much bad but the greatest news was that he did not have bleeding in his brain. Days 8-11 are a blurr I got to feed him his milk but they were worried about infection from the lines inserting into his belly button they needed consent to do surgery to place a picc line. Isaac’s heart mess was getting worse reopening and blood pressure all over the place so more meds and another surgery to close that hole. How do they do a surgery on a baby that tiny and a heart the size of a pecan? The surgeries went very well with the exception of nicking the vocal cord nerve which apparently drops down from the neck and around the heart. The next day I show up at the hospital and freak out my poor baby has ivs in both hands and a tube going in his head and no one had called me to let me know any of this was happening. The broviac line that had been placed during the heart surgery wasn’t working correctly so they had to go in and move it meaning another surgery. His immune system was nonexistent and I was very worried he would get an infection from all these procedures not to mention the communication between hospital staff was bad so no one knew what was going on and couldn’t tell me either. Back and forth he went on breathing machines a couple good days and then a week of bad days, and so many blood transfusions, but slowly my little man was growing and gaining weight.
No tests were showing he had an infection but there were growths on his breathing tube. The little stinker pulled the tube out himself to show the nurses where the problem was. It turned out to be pneumonia.  He was recovering from the surgeries and now he had to take antibiotics, 3 days later still no change. The infectious disease Dr. thinks he could have meningitis so they want permission for a spinal tap. I have a hard time giving them permission to do this as there are no signs of meningitis or an infection that would warrant such drastic test in a baby so small but after several phone calls from the Doctors I give in I understand it is the hospitals liability and they have to do it so they are not sued.

May 20th Daddy finally gets to come back and see Isaac. All tests came back negative and he was off all meds. They were going to start milk feeds again and he was being weaned off the ventilators again.
May 25th, almost a month old and I got to hold my baby for the first time. It was heavenly till he stretched and moved his breathing tube. It all went downhill from there and he had to go back to bed.
Between steroids and me holding him almost daily he improved immensely. He was growing and being a stinker terrorizing the nurses. We got a friend to take pictures and Isaac continued to do well into June. On the 18th I held him for 2 ½ hours and they upped his feedings.  He continues to do well breathing and Isaac is now 2lbs 15oz. July 14th Isaac is off the respirators and only has a hiflo nasal canula to give him a little oxygen. They also moved him from the pod to a real crib. Late in the month he had a busy day and between eye exams and physical therapy, breathing treatments and trying bottle feeds he got worn out and they had to put him back on a respirator. Isaac’s continues to grow he is now 3lbs 9oz. We had several bad days the end of July with temp nurses but he catches back up and grows to 5lbs in August and we are released to take him home on August 28th.



Isaac is now doing very well.  With ear tubes he hears very well as far as tests can tell.  His vocal chords have some nodules but are not paralyzed as speculated. He signs over 25 signs and says about 5 words when he wants to. He is a little below the curve for his height and weight but he eats just fine. There are no surgeries in his future at this time and he is happy just being himself.

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