I was asked to write a blog post recently that told Isaac's story and update everyone on whats happened since he has been home. So here is a simplified version of what has happened in his life for the past 2 years.
Sitting here watching my little monkey play in the bathtub giggling, splashing and quacking like a duck is a miracle that most people take for granted. Today I have a happy healthy 2 year old who is just a bit short and does not talk, but with 4 kids this is blessing. It wasn’t always like this though. It seems like an eternity ago in December ’08 we were grateful for life itself as my mother-in-law had just had a stroke and my father-in-laws health was failing 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. I scheduled with the midwife and went about our lives.
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.
The next day I saw the midwife and we wasted no time checking on the baby. To everyone’s surprise there was a heartbeat loud and strong. So we went to a colleague to get a sonogram and see what exactly was causing the bleeding. The 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. As hard as that is to do with 3 children I did it with lots of help from family and friends.
At 23/24 weeks I started contractions. Little ones here and there so I took it a little easier on light bed rest I stopped doing house work and only played with the kids and watched movies. Then one night the contractions got more regular and by bedtime they were painful so we kept a log and I was in labor. Knowing it was way too early we quickly gathered the herbs to stop labor and within the hour the contractions had completely stopped. The next day (Saturday) we went to the hospital for some tests and observation. I had an UTI so we treated it and went home for complete bed rest till Monday when I would get another sono. Needless to say I dilated over the weekend from a3 to an 8 without ever feeling any contractions. There were clearly contractions showing on the sono monitor but I was feeling nothing. They sent me straight to the hospital where I would remain tilted with my head down until my baby was born.
24 hours later lying in a bed (remember the angle) I had a headache and not much sleep but I was clearly having a baby and they could not stop it. So with my husband and some wonderful friends Isaac Xavier Finch was born 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 old the nurses were worried about his jaundice and 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 by day 4 and the Doctors decided to start medications to close it. If that didn’t work it meant surgery. Isaac was breathing very well on the ventilator and they were going to wean him off so we could hold him. Day 5 wasn’t so great Isaac had low blood pressure and they were giving him meds for that but they really needed the valve to close to guarantee his pressure to normalize. Day 6 was great there were no signs of bleeding in Isaac’s brain and he had gained weight. At 7 days old he was doing well enough with his breathing that they started giving him some milk through a tube. Days 8-11 are a blurr of blood transfusions and back and forth on breathing machines. 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 tine 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 sucked so no one knew what was going on and couldn’t tell me either. Mothers day was a sad day my little man was very swollen from all the surgeries the blood transfusions and all the different medications. Isaac had gained weight through all this and was recovering very well.
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. Test results showed pneumonia. He was doing well after the surgeries and now he was having to take antibiotics and other medications that could cause hearing loss and 3 days later still no change. The infectious disease Dr. thinks he could have meningitis so they wanted 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 eliminate every possibility.
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 continued to do well breathing more and more on his own. By the 23rd Isaac was 2lbs 15oz. By July they took him off the ventilator and put him on a machine that just blows air into his lungs to keep them from collapsing he went 2 whole days breathing on his own with this machine before they decided to give him a rest and not overdo it. Isaac was doing so well the nurses had nothing to do so they dressed him up. He was up to 3lbs 9oz.
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.
August 9th he had several good weeks bottle feeding and breathing more and more on his own. He is a little over 5lbs now.
He had a few days with temp nurses and regressed he stopped eating and just wasn’t behaving so it ruined our chances of taking him home this week. Isaac got moved to an area of the NICU for bigger babies that don’t need as much care and it is a step closer to coming home but we are now waiting on the eye Dr to decide if surgery will be needed for his retinopathy of prematurity which seems to take forever. By the last week in August we convince the eye surgeon that he can follow along with office visits and there is no need for Isaac to stay in the hospital so we get everything ready for him to come home on August 28th.
Over the next few months he fights with what the doctors believe to be reflux but we now know to have been an allergy to the formula he was on. Due to the allergy he has lost a lot of weight and got behind with his growth.
In September Isaac ends up having the eye surgery and we have several good visits with other Doctors. His lungs look great and he no longer needs oxygen, His immune system is great and he is growing and happy.
Over the winter we try and schedule his other surgery that was needed and 3 times it got canceled for irritating reasons the last time an ear infection he probably got from the pre-op apt so in May ’10 he ended up getting tubes placed in both ears and we find out he has growths on his vocal cords which could be keeping him from babbling or making sounds. He finally gets his surgery in December ’10 and we are now fighting with doctors who think Isaac needs hormone therapy because he is not caught in his up growth with most preemies his age. Isaac still doesn’t talk and has had multiple hearing tests done over the past year and all have come back normal so we have started Speech therapy and teaching him sign language He adores Signing Time and I highly suggest it for all babies weather they are special needs or not. As of July 2011 Isaac signs more than 25 signs and says 3 or 4 words.