The OB said she was not qualified enough to help with the delivery because I was so high-risk. She would need to perform a paracentesis to drain the fluid out of Isaac’s belly (it was bigger than his head) so I could deliver vaginally, but then also said that Isaac’s best chance may be a c-section. The OB transferred me via ambulance to Swedish and a Neonatal/Perinatal Doctor. My contractions had already mildly started so I was injected with something to stop contractions for the way over to Seattle. No one wanted me to deliver in the ambulance because with my history, it could be coming on fast!

Once I got checked in at Swedish and met my new OB, she told us that I would probably need a c-section, but wanted another ultrasound done just in case she could get at the fluid in his abdomen so I could deliver vaginally. Contractions started to come on mildly again by the time the medicine wore off. As soon as the ultrasound came on the screen, the OB was sure she could get at the fluid. Hooray, we could deliver vaginally! I didn’t want a c-section. So she went in my abdomen with a needle and then into Isaac’s. That was a painful 4 1/2 minutes! The doctor took out 500cc’s of fluid before it looked like we could go ahead with delivery. Isaac’s heart rate went up over 200 bpm at that time. I can only imagine how much pain that needle caused him. He didn’t even get the local like I did. After a short while, his heart rate came back down and the doctors gave me a small dose of Pitocin at 9pm to get my contractions going at a good rate. Thirty-six minutes later, Isaac Daniel Mattingly made his appearance, weighing 3lbs. 7ozs., measuring 15 inches long and trying to cry and breath on his own! The four doctors and nurses taking care of Isaac took him away to the NICU. The other four doctors and nurses took care of me. It didn’t take me but an hour to feel like eating and walking. But my heart was heavy for Isaac. I had no idea what was happening with him. I could only wait.

Around 11pm, we tried to go see Isaac, but the doctors were still busy with him, so we had to go back later. At 2am on the 8th, I finally got to see my little boy. It was shocking. He was attached to so many IV lines, a catheter and a machine called an oscillator to help him breath. And he was so little. His belly was wrinkly and big. It was hard to sleep without my baby in the same room. Without the ability to nurse him or to hold him. I couldn’t even hear him cry or change his diaper. But he was alive! God gave him a chance. For that I will always be grateful.

My husband and I went back in the morning to see him. It was less hectic this time and I was prepared to see Isaac with all the things attached to him. His hands were so little. His forehead kissable. One of the first features I fell in love with was his lack of eyebrows. He looked like a little old man. His eyes told us so much. I’ll never forget his eyes. Eyes that could look deep into your soul. The first 24 hours of his life were the most critical. They said that if he had true Potter’s Syndrome, he wouldn’t even be able to breathe with the oscillator. But he made it… his lungs were half the size they should have been, but they were able to support him with some help. These were lungs that should have never been developed with the lack of amniotic fluid. Now the doctors were hoping they would grow more so that he could come off the lung support. Eventually, the doctors said his lungs were sufficient, but due to his lack of abdominal muscle from the PBS, he would have to stay on the ventilator (a step up from the oscillator) for quite sometime. Enough time to help him get stronger.

After the first week, things started to look hopeful for Isaac’s chance at life. The many doctors found that his kidneys were working exactly the way they should be, his bladder was only slightly enlarged and flaccid and his ureters were not that dilated, but were angled in the wrong way. For anyone who has a child with either PUV or PBS, that is wonderful news! They played around with the idea of doing a vesicostomy so that the urine could drain out of his bladder, but after awhile, they decided to try letting Isaac urinate on his own. And guess what? Isaac could do it without any help! Amazing! The doctors also found that although Isaac had all the signs of PUV previously, all the ultrasounds and tests they did proved that he didn’t have PUV now. Interesting…. Isaac did have level three reflux though and was receiving antibiotics to prevent any UTI’s.

The doctors also found that Isaac did not have Clubfoot like diagnosed in the womb, but did have Right Congenital Hip Dysplasia. He also had a flared rib cage and undescended testes. All are related to his PBS and not having enough amniotic fluid to move around in while in the womb.

Isaac’s diagnosing of Urinary Ascites in the womb was also inaccurate. At first, they thought it was leaking out from his bladder or ureters since he developed it in the womb, but after a bunch of tests, that wasn’t the case. Fluid kept building up in Isaac’s abdomen after he was born and still to this day, the doctors don’t know where the fluid came from. They could never figure out exactly what the fluid was either. Though almost every time it was the color of urine when they took it out of him. All in all, Isaac was tapped at least 22 times during the 9 1/2 weeks he lived. Every time, they had to poke him with a needle to take out the fluid that no one seemed to know about. There are only three kinds of ascites one can get and my son had none of them, or at least all the tests done on that fluid could never pin point that it was any of them. Just another rare thing my son had. He was very special, wasn’t he? I’ll miss his wrinkled belly… a belly that filled out each day with new fluid. It’s funny how we fall in love with our children’s imperfections. I can’t imagine him being any other way.

Last but not least, Isaac had heart problems. Something that we thought he might have problems with at the 18 weeks ultrasound, but then was ruled out. Isaac did in fact have an abnormal heart. Something else the doctors couldn’t fully explain. Even the Heart Surgeon! On Christmas Eve morning, Isaac had his first heart surgery at Children’s Hospital in Seattle. He had a coarctation/narrowing of his aorta and the surgeon fixed it doing an end to end repair. Finally, Isaac’s blood pressure leveled out. We were all worried about him because the blood pressures in his lower body were much lower than his upper body. That’s what triggered the alarms to check out his heart again. That and also the fact that Isaac’s ductus wasn’t closed yet since he was a preemie. Once that ductus started to close is when the problems started to arise. It made the narrowing much narrower since the blood couldn’t go through the ductus. Isaac made it out of surgery with flying colors. Everyone was praying for him. Even people I didn’t even know. For a week or so, Isaac was doing so well. There was even a point where all Isaac needed was his vent tube and feeding tube. Nothing else! No IV’s, no catheter, nothing! It felt like so good knowing that finally things were going in the right direction. We were so sure we would bring him home one day. Even the doctors were hopeful and amazed with his progress.

But then they found another narrowing in his aorta. This one much worse. The cardiologists weren’t even sure how it happened exactly and why it all of the sudden got worse. Another unexplainable thing to try to explain about my son. The "I don’t know"’ answers were starting to be the norm. The arch in his aorta closest to his heart had a narrowing of 0.9mm and 4mm in length. It was a very large narrowing. First they tried a balloon procedure to see if they could open it, but that didn’t work. Next they tried putting a stent in, but that didn’t work either and it would have only been a temporary fix. Finally, Isaac had to have another heart surgery. Most likely open-heart so the surgeon could get at the arch. But first, the surgeons wanted to try it through the side since they had to go in there anyway to loosen up the tissue from the first fix. Thankfully, through the side worked and they never had to open up Isaac’s chest or put him on the heart/lung machine. If they had to do that, Isaac had a 10-20% chance of not making it through surgery. I praise God that they were able to go through the side! What a miracle! After the surgery, we heard another "I don’t know". The surgeon found that the aortic arch wasn’t narrowed, it was the size it should be, but once they cut into it, they found extra tissue on the inside. Possibly remnant from the ductus. But again, no concrete answers. All of us, including the doctors were thankful that the surgery worked. Now we just wanted to get the Ascites thing figured out and were hoping the heart had something to do with it. Instead, the fluid build-up came on much more strongly.

Once Isaac was out of surgery, they tried giving him Lasix to try to take the fluid off his body. They didn’t want to try before because they were worried that it would over work his kidneys, but now that his blood pressures were back on target, they gave it a shot. About a week before this second heart surgery, Isaac had Edema all over his body. Fluid was not only building up in his abdomen, but also in his tissues. We were hoping the Lasix would work to help take it off. Unfortunately, Isaac didn’t get more than two or three doses of Lasix, because a couple of days after the surgery, he developed a blood infection (possibly from an IV). Everything took a turn for the worse and Isaac went downhill very quickly.

In just three weeks time, the doctors were confident he would survive to telling us we may need to take him off the vent because his body was trying to die. The blood infection was attacking all of his organs, his blood pressures everywhere were dropping, the Edema and Ascites was coming on ferociously (they had to tap every day at this point and would get between 200-300cc’s). They couldn’t even get new IV lines in because the swelling was so much from the Edema. It was heartbreaking to watch my son fill up with fluid everywhere. It got to a point where you couldn’t even tell that his ear was an ear anymore. I don’t think I’ll ever have those images of my son being as big as he was and then looking at his 2 1/2 inch foot and knowing that he was really about half the size that I was seeing. He weighed almost 11 lbs. at that point. Half of that weight was fluid.

The night before Isaac died, his daddy, aunt and I stayed up with him. We sang, we prayed, we praised God, we loved, kissed, and snuggled with Isaac. We told Isaac it was ok to go. He wouldn’t even open his eyes. He wouldn’t wrinkle his forehead to express how he felt. He stopped urinating completely despite all the fluids he was getting. His kidneys gave out because the blood infection attacked them. One of his lines fell out and there was no way the doctors would be able to get another one in. One of the most important medicines, he could no longer receive. His blood pressures were getting down into the high teens and early twenties. At any moment he could have gone into cardiac arrest because of it. The last tap of his abdomen left a small hole that allowed the fluid to seep out. It didn’t want to heal. He was back on the oscillator at such high settings that it could burst his lungs. His lungs were filling with fluid. Finally, we decided in the early hours of the morning to take him off life support and let him go peacefully. It had been two long weeks since I held him last and I wanted him to go while in my arms knowing he was greatly loved. He didn’t even try to take a breath once they took the vent tube out. There was no struggle. God took him to heaven within five minutes on February 13th, 2003. Now Isaac is face to face with Jesus. What a wonderful thought to keep with me forever until it’s my time to go.

Words can not express how I felt during that time. I was in pure agony. I wondered why God chose not to fix the Ascites, but had chosen to fix so many other things that were wrong with my son. What was the importance of Him not fixing the Ascites? I may never know until I get to heaven and can ask him face to face, but I do know that through all the trials and all the problems Isaac had to endure, that God used the life of my son to touch so many others lives. It brought many people down on their knees in prayer. God showed us His miracles time after time with Isaac. He was a baby doomed, but God saved him. He was a baby that wasn’t supposed to be, but God chose him. Isaac was a miracle because he lived. Even if only for a short time, Isaac lived. And that is the true miracle of his life.

Please never lose your hope or your faith in God. Believe in the power of prayer. I know I do.