Wednesday, January 18, 2012

Meet Riley

Riley’s Story, written by his mother Alexandria: 

The day I found out I was pregnant was such a joyous time in my life. After losing two babies to preterm labor  and having an incompetent cervix, I knew that this pregnancy would have some bumps in the road. I had a very easy first trimester so far up until I was 11 weeks. I started have contractions and my cervix began shortening. When I was 13 weeks they decided that it was best put in a cerclage due to the incompetent cervix. The night before the procedure I began having really intense contractions and was unable to sleep. The next day the doctor put a monitor on me to check my contractions, the monitor picked up a few and the doctors decided to wait on putting the cerclage in. They started me on progesterone and said they would reschedule the procedure in a few weeks, by then they were hoping that I would not need the procedure and that my cervix would be longer. They told me that I would need to be on moderate bedrest but it would be okay for me to work one or two days a week, just not any heavy lifting. The scheduled me to come in twice a week to check my cervix. 

After a few weeks of everything staying the same, I returned to work after getting news that my cervix was 3.5. The next day I was working as a cashier when I felt pain in my lower abdomen. I went to the restroom and found out I was spotting. It was 6pm and my doctor’s office was closed, but I had an appointment for the following day so I decided to go home and rest. The next day I went to the doctors and they checked my cervix and it was 1.3 and they decided to do an emergency cerclage because they were not sure how much longer my cervix would be able to hold up without me going into preterm labor. The procedure went really smoothly and I went home after 2 days in the hospital. They told me that I would need to me on bedrest for a few weeks but after that I should be able to return to work but take it easy went.

 After two weeks of bedrest, I returned to the doctor to check my cerclage. After doing the vaginal u/s the tech said she wanted to check the fluid around the baby to make sure I was not leaking any fluid and I told her I would not have noticed because of the suppositories I was taking. Well, she checked my fluid and noticed that there was fluid in the baby's abdomen. She went and got the doctor and when they came back they told me what was going on. There is a lot of fluid in the baby's abdomen which had them really worried. They thought I had Parvovirus B19. There was just so much information to take in. The doctor said he had seen two cases this year; one the woman waited on treatment and lost the baby and  the other woman had the treatment and it looks like she and the baby will be fine. So the scheduled me an appointment for a more intensive ultrasound the following day.

The next day they did the ultrasound and ruled out Parvovirus B19 but determined that my son had PUV (Posterior Urethral  Valves). PUV is a congenital birth defect that happens only in boys. It is when there are excess flaps of tissue in the urethra (tube from the bladder to the outside of the body) are blocked not allowing the urine to flow and affects all parts of the urinary tract, as well as leaving very little to no amniotic fluid for lung development. It can also cause renal and lung failure. It occurs in 1 out 4,000 live births but that 8,000 are diagnosed with it. It is thought to develop in the early stages of fetal development. 

The doctor said my son had a blockage in his urethra which has caused a rupture and there was urine in his abdomen. He said his kidneys and bladder are enlarged at the moment and are causing stress on my son. The doctor said there is a 10% chance that when he is born that he will not  live for long and there is a 10% chance that when he is born that he will have either lung failure or kidney failure or both. He said once he is born he will have to have surgery to fix the rupture as well as remove the blockage. He will have to have numerous surgeries to fix everything as well as he might have to be on dialysis.  When he told me that only half of the babies that are diagnosed with this live, my heart dropped. I was at a loss of words, here I was sitting by myself, taking in this information and I just felt like I had lost my world. The doctor then told me that I could terminate. He informed that California law allows up to 21 weeks to terminate a pregnancy. I was 20 weeks and 5 days. I went home and cried, I called my mom and cried, I couldn’t stop crying.

After posting on Babycenter, looking for help, I had found some support. A friend reached out to me and told me that her friend’s baby was diagnosed with the same condition and we were actually due on the same day. I got in contact with her and she truly helped my decision. She told me questions to ask the doctor and procedures that could be done in utero. The next day I went back to the doctor and told them I would be keeping the baby and to do whatever needed to be done to save my sons life. That day I had bladder taps done to see if his kidneys were working and what would be the next step. I had also decided to move home with my mom and a a specialist that had dealt with the condition before. I had two bladder taps before I moved and they determined that his kidneys were working. I was super excited. I moved that weekend and saw the specialist that Monday. When I got there he told me he had received my file was glad that I had the bladder taps done and that his kidneys were working. The doctor scheduled for me to come in every two weeks to check my fluid level and to check on the baby.

At my scheduled appointment they were checking my fluid and noticed that I had no fluid, they immediately sent me to the hospital and scheduled a shunt procedure as well as amniotic infusions, I was 24 weeks. The procedure went well and my amniotic fluid went up to 10. I was super excited and was able to go home one week later,  but I was to be on strict bedrest. Could only get out of bed to use the bathroom and shower. Two weeks later I returned for me scheduled appointment and they noticed that they shunt had slipped in and that it was no longer draining the bladder. The scheduled me for another shunt and amniotic infusion procedure. This time they kept me in the hospital for a week to make sure everything looked ok, I was 28 weeks. I went home and once again was on strict bedrest. I called my doctor and informed him that my mom went out of town for work, he told me it would be okay for me to get up and fix my meals but that was it, a maximum of 1 hour a day out of bed. My mom got back from her work trip one week later. I was excited that she was home because I would have some help around the house.  I was excited that I had made it to 29 weeks.

That following morning at 5 am my water broke. I was scared. I got out of bed and went downstairs to my moms’ room, thankfully she was awake. I told her my water broke and we went to the hospital. At 5:30 we got to the hospital and they determined that, in fact, my water had broken, they checked my amniotic fluid level and I had none so they decided to keep me in the hospital until I delivered. I started having contractions so they gave me magnesium sulfate to try and stop them. The contractions subsided and they started me on antibiotics to ensure that I didn’t get an infection. They told me that since my water had broken that the next time I had contractions they would just let them happen, they wanted to keep the baby in for as long as possible but they also wanted to make sure that he didn’t develop an infection. Every night I would touch my belly and say “Stay cooking Riley, momma needs you to stay in there.” And he listened for a while.

On the morning on July 21, 2011, I woke up at 4am to contractions but kept telling myself they were just Braxton hicks and that everything would be okay. I called the nurse and said I needed to pee and also to get the doctor. After peeing the contractions got more intense, I asked the nurse for some something to take. The doctor came in about 4:45am and said she would check me. While she was talking to me and waiting on the nurses to bring in the things she needed to check me I started crying. She asked me if the contractions were closer together, I explained that I was in pain and that I thought they were Braxton hicks. She checked me and told me that I was 5cm dilated. I grabbed my phone and called my mom and told her she needed to get the hospital because the baby was coming. By 5:00 am my mom had arrived and I was 10cm dilated. Riley was born at 5:35am. I didn’t hear a cry when he came out and my heart sank. The doctors started working on him right away. They had him hooked up to all these machines so quickly that I thought I wouldn’t get a chance to hold him, but I did. They let me hold him for a few moments. Then they quickly took him to the NICU. He looked like a butterball turkey. He weighed 4lbs 7oz and was 16 inches long. When I saw him again a few hours later they told me that it was all retained fluid and in a few days he will be even smaller and not to be sad when I see the changes. He spent the first few weeks on the ventilator. He had three surgeries to correct his condition while in the NICU. He spent 75 days in the NICU. He will be six months on the 21st and is just the happiest & cutest baby I could have ever imagined. He is definitely my miracle boy and continues to amaze me every day.

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