In about May of 2008, my wife Grace was not quite 6 months pregnant with our 4th child. We had been going to regular ultrasound appointments, due to her history with pregnancies. This was actually her 9th pregnancy and we had three beautiful children, which means that she had 5 miscarriages. Needless to say, we were a little anxious about this one too. We found out rather early that we were going to have another son. He would make the count, three boys and one girl. Praise God!
It was about this time that she developed some swelling, which quickly moved on to a severe case of hypertension preeclampsia. She had never had this issue with any of her earlier pregnancies. She was on complete bed rest, at home, but then ended up being admitted, because the conditions kept getting worse. First stop was our local hospital, where she stayed about a week and was then moved on to St. Elizabeth’s hospital in Brighton, MA. Her condition kept getting worse and now thoughts of her dying were going through my mind. They put her on a magnesium drip, which is a nasty treatment and had her very edgy and sensitive, so there was no visitations allowed, except me, her husband.
Then came Thursday, June 26, 2008. Grace had undergone multiple testing throughout the week and by this time it was determined that the baby had to come within the next 24 hours, because she was showing signs of heart failure. They monitored her that night and the plans were to deliver the baby early the next morning.
June 27, 2008: Naturally, Grace’s condition had worsened overnight so it was now or never. As the time approached, we prayed together, that whatever God had planned for us, would bring glory and honor to him, regardless of the outcome. Shortly after that the wind began to whistle just outside the hospital room window. I went over to the window and a torrential downpour started with thunder clapping and lightning striking loudly. I turn to Grace and said: “He’s here. See, he is in control. He personally showed up to bring you through this.” She had no choice but to believe, because there was just no doubt considering how quickly he responded to our prayers. It was perfectly calm before that.
Instead of the normal delivery room, they wheeled her down to the O.R. in case there were any complications. I was in the waiting room while they prepared her for the emergency caesarean section. They wasted no time, because when I finally walked in the room, they already had her opened up. I settled in near her head and kissed her. She was awake during the surgery and the extra Doctors on hand showed me what they were watching to make sure her heart stayed beating properly. It was reassuring to have them all there, but we knew that the ultimate physician was there too.
After a few more minutes, the Doctors stated that they were in and could see the baby. I had a camera, so as they began pulling him out, I snapped a picture. I got a few more before they moved him over to another station for the Apgar tests and some cleaning up. They called me over to cut the cord, which I videoed. It was official, Avery Aaron Austin was here. He was 2 months early, so he weighed in at 3 lbs. 7 oz. and was 16 3/4 inches long. Again, Praise God!!
Grace assured me that I should go with Avery to the spot they had designated for him, before going in to the N.I.C.U. I gave her another kiss and told her I would be back shortly. After staying with Avery for a while, I was anxious to see how Grace was doing, so I went back to the waiting area, just outside the P.A.C.U. where she was. I waited for what felt like a couple of hours before they came out to get me. I went in and there was my smiling wife. She asked how Avery was and then we thanked God again, for bringing both of them through the surgery, understanding that neither one of them were out of the woods yet. God was in control and he let us know that he was really there for us, when we needed him the most.
The N.I.C.U. Experience
Now being in a N.I.C.U. unit was not a new experience for us. Our oldest son Andrew was in the N.I.C.U. when he was first born too. When Andrew was born, the pregnancy itself went relatively smoothly and there were no indications that anything was wrong. When Grace was 9 months pregnant, she fell on some black ice. We brought her into the local hospital where she had a stress test to make sure that the baby was okay. Everything was fine, so we went home. Andrew apparently didn’t want to leave the cozy place he was living in, because he was 6 days over due now when yet again, Grace fell on another patch of black ice. This time she didn’t want to go in for a stress test, but I thought better of it and we went in. As it turned out, this time, the baby’s heart rate was dropping and Grace needed to go through an emergency cesarean section. If only our faith was as strong then as it is now. Andrew was born at 6 lbs. 10 3/4 oz. and passed the Apgar tests with no problem. The one thing that was strange, was that there was almost no amniotic fluid to be found.
After 3 days in the hospital, the Pediatrician noticed that Andrew’s kidneys were enlarged. He was moved to the New England Medical Center (NEMC) N.I.C.U. unit, in Boston, for further observation.
After several tests, it was revealed that he had a blood clot in the Superior Vena Cava of the kidney, which caused the blood to back up into the kidney causing the enlargement. He was put on a blood thinner medication to get rid of the clotting. On his 12th day of life, which was Valentine’s Day, Andrew had a seizure. This happened over night, so Grace and I were not in the room when it happened. When we came in the next morning, we were first assaulted by an IV line sticking out of the side of Andrew’s head. No one had caught us ahead of time to warn us. When we were told about the seizures, we cried. Further testing revealed that Andrew also had a clot in the veins in the left side of his head which caused a stroke. I must say that the hospital staff was wonderful. They drew diagrams and really explained what they were seeing and how they planned on treating it. On his 22nd day of life, Andrew came home from the hospital and has not had to spend any elongated time there since. Andrew is now 18 years old and suffers from multiple medical diagnosis, which he is followed for routinely. Andrew is able to speak and walk and functions at a decent level, but cannot tell time, read past a 1st grade level or even tell you what day it is. Amazingly though, he can look at a picture of something and build a replica of it using his various building toys and is a decent drummer to boot, having played in the church band on several occasions. He is an absolute blessing to us.
Shortly before Grace was put on bed rest, Andrew confided in her that he had prayed for the baby. Grace was curious and asked him what he prayed for. Andrew stated that “He prayed that Avery would be just like him.”
Grace was a little stunned by that, but not wanting to hurt Andrew’s feelings said that “God knows what’s best, so we’ll see what he has planned.” That is a slight paraphrase, because we don’t remember her exact words, which is completely understandable.
Well, with the surgery done and Avery in the N.I.C.U. and Grace back on the same floor as Avery, we had pretty much forgotten about Andrew’s prayer. The recovery for Grace was very difficult. She was still on the magnesium drip and the pain was almost unbearable. She slowly recovered and we continued to give praise to God for bringing them both through it.
At about 3 to 4 days old, the hospital gave Avery a head ultrasound, as a precaution, due to the medical history of the family. He was only 32 weeks into the pregnancy, when he was born, which is a time frame where they normally forego an ultrasound because at that point, they are fairly confident that the baby will make it. Well, the results of the ultrasound revealed that Avery had a Grade 4 hemorrhage on the left side of his brain, which was later found to be caused by a clot. Andrew’s prayer immediately flooded our minds as we tried to digest what we were just told. Up to that point, Avery had shown no signs of difficulty. He was breathing on his own, nursing and moving around appropriately considering his age.
Still, we prayed that the damage would be minimal and that Avery would be able to come home soon. Although every injury affects a person differently, we were confident that we could handle anything that would come Avery’s way, having been through it all before.
Closer To Home
Because of the hemorrhaging, Avery was transported a few miles away to Children’s Hospital, also in Boston. It was here that we found out that the hemorrhage was caused by a clot. Avery had undergone MRI’s, MRA’s and the like, to determine what was going on. He did not respond very well to the Morphine that they used to put him under and had a few “spells”, where his heart rate dropped and he had to be stimulated to start up again. We found a few of the Nurses here to be very good and still communicate with some of them today.
Well, everything seemed to be progressing along and no further complications were noted, so the hospital decided that Avery could be transported closer to home. We left the hospital shortly after the Ambulance and actually caught up to them on the highway. We snapped a few pictures of the ambulance on route for a memento.
We arrived at Caritas Good Samaritan Hospital, which is maybe 5 to 10 minutes from home. Avery was here a few days and had a follow-up head ultrasound, which revealed that he now had something happening on the right side of his brain. Again, Andrew’s prayer flooded our minds.
Avery was transported back to Children’s hospital where it was revealed that he had another stroke, this time on the right side of his brain. Now this was getting hard and our prior confidence had been humbled, but still, our faith is in God above and we were still believing him to be in control. What choice did we have? There was nothing at all we could do to change the situation and we knew that this was not God’s doing. How can we blame him now when we know he brought us through to this point. He would never abandon us and we knew it.
Avery Comes Home
We spent the next two months at Children’s hospital. During this time, we learned that Avery had some weakness on his right side, but other than that, he seemed to be responding properly to all stimulus, considering his age. He was able to nurse and keep his pacifier in his mouth.
Discussions began between us and Avery’s team of Doctor’s on the process for getting him home.
When Avery’s older brother Andrew was only three, we found out that he had a genetic blood disorder called Anti Thrombin III deficiency or AT3. This deficiency causes the blood to over-clot, which can cause blood-clots, strokes, heart attacks and many other problems, sometimes resulting in immediate death. We found out that this is inherited and it came from my Wife’s family. Her and her Mother also have the deficiency, as does her siblings and many other relatives. This immediately answered some other medical issues that predated the discovery of this disorder in the family. The family tree is littered with medical problems that could now be traced to this very deficiency.
Avery also has this deficiency. Since we already knew about this, we naturally informed the Doctors. For this reason, they did not want to send Avery home without giving him something to prevent the deficiency from causing further problems. So a central line, called a Broviac, was placed through his chest, with a catheter threaded close to his heart. This line would be used to administer AT3 directly into his blood stream. Because of the delicate nature of the line and the product being given, we had to have a local nursing agency come to the house three times a week to administer it.
With the line now placed, which is a surgical procedure, Avery was cleared to go home for the first time. Just to show us that he was still involved, the day Avery came home was my 39th birthday. We had spent the entire day in the hospital, so there was no birthday party, but I didn’t care. I had received the best present I cold have ever asked for.
My boy was home!
In And Out And In And Out
Central lines are really good for administering medications, but they do have potential problems. There is increased risk for infection if left in for long periods of time and this was not something we wanted to happen. A decision was made to remove the line and just see how he handled it, without giving him any other medications to handle his AT3. We had considered other treatments, but because of his age, the Doctors were not comfortable going this route.
My Wife and I made the decision to stop the AT3 treatments and not to give him anything else for it, based on the fact that Andrew had gone 14 years, without another issue. We were more than ready to get him back to the hospital, in the event that he did have another issue, so they went ahead and removed the line.
Over the next few months and into the next year, 2009, Avery was in and out of the hospital for routine check-ups and the like.
Around the March time frame, we noticed that Avery would occasionally flip his eyes up and throw his head back. We originally thought that he was just trying to see what was in that direction, but wanted to be sure that was all it was.
Avery had started to develop seizure activity and those little throwbacks were called infantile spasms, which is a form of Epilepsy. He was given medicine to try and control them.
Shortly after this, we had qualified to have in home nursing and hired several nurses to fill the allotted hours. This is truly a blessing, because we home school two of our children and this freed Grace up to teach them without too many distractions.
During the following times, Avery’s seizures continued to get worse to the point where he could have over 200 per day. We were consulting the doctors and adjusting his medication routinely.
The Long Haul
On June 10, 2009, Avery was admitted back in to Children’s Hospital, in Boston. This time he was having feeding issues. He was already being fed through a G-Tube with the addition of a bottle that he would drink.
It was decided to change his G-Tube to a GJ-Tube. This allowed him to get his medications through the J-Tube, which bypasses his stomach and goes directly into his jejunum (intestines), and to use the G-Tube to vent his stomach, from all the gas bubbles and such. After a short stay, he was sent home.
A few days later, he was readmitted because he had a grand mal seizure that required the use of emergency medication to stop. While there, he had several more grand mals, so a multitude of tests were done, including an EEG, EKG and an MRI. His medication was changed and for the first 3 days, he did not have a single visible seizure. Praise God!
On the fourth day, however, he had more grand mal seizures that required emergency medications again. Gratefully, we were still in the hospital when this occurred and the doctors were there to see them. With the new medication being adjusted, we were sent home.
Four days later, we were back at Children’s being admitted again. This time, Avery had been showing signs of having breathing issues. It was determined that he had aspiration pneumonia.
One of the side effects of seizure medications is decreased muscle tone. Since Avery has Cerebral Palsy, his muscle tone is already quite weak. Avery also suffers from Reflux, so between the reflux and the saliva from his mouth, he aspirated fluid into his lungs.
After the pneumonia was cleared up and Avery was happy as a clam, we were sent home again.
One week later, we were back yet again.
All told, we had been in the hospital more than we had been out. From June 10, 2009 until mid January 2010, Avery and Grace were at Children’s hospital.
During the last 3 1/2 months, Avery had several procedures done to help him. He had a Nissan, salivary ligation, and a tracheostomy done.
The Nissan is a procedure that wraps the top of the stomach around the bottom of the esophagus. This is supposed to prevent any stomach contents from coming back up, causing aspirations from below the lungs.
The Salivary Ligation is a procedure to remove some of the salivary glands from the mouth area. This is supposed to decrease the amount of saliva that Avery generates to prevent him from aspirating from above his lungs.
The Tracheostomy is a procedure that cuts a hole in to Avery’s throat, to help connect a ventilator that helps him breathe and to allow us to suction out any increased secretions he might have that could also cause an aspiration into his lungs.
Avery and Grace have been home since mid January 2010. We have been properly trained to handle most of the situations that Avery might come up against. This is so that he and Grace will not have to go back in to the hospital for those dreadfully lengthy stays any more.
We continually ask for your prayers for Avery and the entire Austin family. Not just for continued health, but also that we would learn what it is that God is teaching and training us for.
We will praise him in this storm.
God bless you!