Thursday, May 13, 2010

Our baby's NICU journey

My name is Kathleen and my husband’s name is Heath. When we found out we were pregnant we were surprised. We were not married yet and still attending college. However, we were excited. I graduated college and we moved to my hometown. The pregnancy was going great. I was working 40 hrs a week and felt very good. My last doctor appointment was great. There were no problems. Then I began having back pain. I didn’t think much about it. After a week of the pain, it got worse. Because it was Friday, my doctor’s office was closed so we decided to go to the hospital just to check it out. We got there at 2p.m. and they told us that those back pains I was feeling were actually contractions. I was 6cm dilated, my bag of water was bulging, and the baby’s foot was right behind the bag. They immediately transferred me by helicopter to a hospital an hour a way that had a NICU because I was only 25 weeks along. Heath could not go with me and had to drive. When I got there the doctor told us there was nothing they could do to stop my labor and he would have to do an emergency c-section.

Owen was born August 28, 2009 at 9:03 p.m. He weighed 2lbs 2oz and was 13.7in long. His first week of life went pretty well. He was intubated because his lungs were underdeveloped and he was unable to breathe on his own. He was very strong and didn't seem to have any major problems.

When Owen was 3 weeks old he was sent to a children's hospital for an emergency surgery in the middle of the night. He developed a disease called Necrotizing Enterocolitis or NEC. We were told that he was not going to survive surgery and we should prepare for his death. He made it out of the surgery alive but was extremely sick. During surgery they removed 60% of his small intestine. The next month he slowly recovered from his surgery. He was on a ventilator because he couldn't breathe on his own along with many IV's and many tests. Owen seemed to be doing the impossible. He just kept getting better and better. Then, one day, he started to get sick. They found that he had an ecoli infection in his blood which meant he had a hole in his intestine. He needed another surgery to remove more of his intestine. At this point the surgeon said that surgery would be a waste of time because he didn’t have enough intestines to live after the surgery. Heath and I knew there was no other choice – he was going through surgery. The surgeon was hesitant but did the surgery. He did much better in this surgery and they didn't have to remove too much more intestine. He had an ostomy bag which is a bag that holds all of his bowel movements. His intestines were sticking out of his stomach and emptying out into this bag. It was hard to get used to but soon became second nature to us.

For the next few months we were just there to watch him grow and waited until the day they would re-connect his intestines. He spent his first halloween, his first thanksgiving, and his first Christmas in the Children's Hospital NICU. On Dec 6th Heath and I were married in the chapel of the hospital so Owen could attend and be the best man in the first wedding he attended. Finally, the day arrived. The day Owen would be re-connected, January 6th. The surgeon was not hopeful that it would work. He believed Owen would need to be put on a transplant list for a new liver and a new intestine. However, when he came to talk to us about the surgery he said he was very impressed and was surprised to see how good Owen's intestines looked. After surgery it looked like Owen would not be in the hospital for much longer.

Well, things quickly changed. Four days after Owen's 3rd surgery he was found to have RSV which is a type of cold virus. Now, to us it would be just a stuffy nose and a slight cough. For Owen it was much different. He was very sick. He began to have seizures and heart arrhythmias. He was put back on a high frequency ventilator (the strongest breathing machine the hospital has). They were afraid he would not make it through this virus and there was nothing they could do. He had to fight the virus himself. We were so worried. The longest couple weeks of our lives. He looked like he did when he came out of his first surgery. He slowly started to recover and was taken from the high frequency ventilator to the conventional ventilator. Soon, he had 3 negative tests for RSV; we were in the clear. Things started to get better. However, a week after RSV was tested negative, Owen tested positive for para-influenza. Again, he was so sick. They tried to continue his feedings so his intestines would keep working but he got to a point where he was throwing up his own poop. They decided to stop the feedings until he was healthy again. Finally, at the end of February Owen tested negative for para-influenza.

When Owen got out of isolation for the second time we were concerned about his feedings. It went very slow but we were confident it would work. They only upped his feedings by 1ml every couple days. Slowly he went up on his feedings and down on his IV nutrition. In a little over a month he was completely off IV nutrition and fully on his formula feeds. He came home on April 23rd at about 8 months old with a feeding tube in his nose that continually feeds him so that he can absorb enough nutrition. We are so thankful to have him home and only hope, with time, we will be able to feed him orally.

Thank you all for your continued prayers and thoughts for Owen and our new family

1 comment:

  1. kathleen, your story is amazing, and your beautiful son is spectacular! i hope the best for you and your family! always, Elena