Tuesday, June 22, 2010

I love you, Dad...

Tomorrow will be 18 years since my dad died…..this past week, I have found myself reminiscing about all the good times I had with him. I was so lucky and fortunate to have a father who loved me, who taught me about the world, and supported and encouraged me. Dad made me a better person…..always being compassionate and constantly trying to understand my issues and helping me through my problems. So many children today do not have an active father in their lives. It is sad…..I see it every day and am reminded just how blessed I was to have such a wonderful person to help my mom raise me and my brother.

I remember going to the beach at any time of day (morning, noon, or night) to play in the sand and the ocean. I remember going on long drives with him just to “talk”. I remember going to lunch at quaint little diners that we’d never been to before. I remember laughing uncontrollably at my goofiness. I remember spending countless hours with him in the yard as he taught me how to plant a flower garden and maintain it. I remember him tucking me into bed and reading a story to me. I remember spending time in the driveway and garage as he washed and waxed the cars. I remember watching Elvira and The Twilight Zone on Sunday afternoons. I remember his great hugs and kisses on my forehead. I remember going to the Father-Daughter dance in 6th grade and being so proud.

I remember “the look” and knowing I was in trouble…..BIG time. I remember being grounded. I remember having my allowance taken away. I remember being sent to my room. I remember having my phone taken away until my grades came up. I remember disappointing him and knowing how much it hurt him.

Either way, good or bad memories….they all served to shape me as a woman and as a mom. Those memories will forever live on in my life. Hopefully I have learned the tools that will make me a better wife and mother to my children. He has missed a lot. I would have loved for him to be able to walk me down the aisle when I got married. I would have loved to see him as a grandpa…..he would be so proud of my kids. I would have loved for him to see me receive my Bachelor’s degree and then my Master’s. I would love to just have that one last talk with him, just to hear his voice again. I have officially lived half my life (18 years) without him now and each year that passes, I wonder if it will ever get any easier. It does…..but the memories never go away and I hope they stay with me forever. I love you, Dad….with all my heart.

Wednesday, June 9, 2010

Alex....

I have had a smile on my face since Monday morning and I would like to share why…most of you do not know what we have been going through with Alex since he was born, but I am ready to share our story. When we found out that I was pregnant, we both had mixed emotions….I was thrilled to be pregnant, but terrified of what might become of this little bean growing in my tummy. After losing Andrew to HPE and a pregnancy shortly after, I knew we were not ready for another devastating loss. I timidly called my doctor and made my first pre-natal appointment. We agreed from the beginning that I would have all the tests done to look for abnormalities with this pregnancy. I wanted to be prepared this time. Test after test came back normal and my fears started to diminish…a little. Even though the baby looked good, my pregnancy was not without complications. I had placenta previa (complete) and carried the risk of abruption and hemorrhaging. Those were scary risks that I carried with me…then, it happened…I began to bleed at 30 weeks and was hospitalized. I was fortunate that it stopped and I was allowed to return home on bed rest.

On Easter Sunday, after spending the morning at church, praising God for all that He has done for us, I began to feel different. I was cramping and felt a few really strong contractions. I was almost 35 weeks. I brushed it off and continued about my day. The next day at the doctor’s office, we all realized I was having contractions and there was some suspicion that my placenta was deteriorating. Alex wasn’t moving and reacting like he should and I was admitted that night. After being hooked up to the monitors for a couple of hours, the doctors agreed that I would have a c-section the next day…..it just was getting too risky to wait any longer. That introduced a whole new set of fears and a tremendous feeling of uneasiness. Was he ready to be born? Would he be breathing? Was he going to have to spend time in the NICU like Andrew did? I spent that whole night with Adam, praying that things would be okay.
Tuesday, April 6, 2010 at 3:13pm, Alexander Jude Cassidy was born…..screaming, crying and so full of life! While I laid on the operating table, waiting for the doctors to put me back together, Adam and I cried, relieved and so, SO happy to hear him! It was a fantastic sound….. that innocent and frantic cry! He was 9lbs 2oz and was 19 ¾ in long and breathing on his own! The nurses were doing the newborn screening and asked Adam if he wanted to go see him. He was so proud, so filled with joy….a few minutes later he returned with Alex in his arms and I got my first good look at our son. What a precious gift! He ended up having to spend some time in the NICU due to his low blood sugar, attributed to my insulin intake from the diabetes. But I put that behind me…that was ok; after all, Abby had to be there for a few days as well when she was born.

The next day, the neonatologist came to my room to talk to me. He explained that Alex was born without a tailbone. Ok, I thought….what does this mean? He assured me that it really was no big deal, but they noticed that when he urinated, he dribbled….no stream. And he dribbled all the time…incontinence. Ok. Got it. Now what? He explained that he would probably just be followed as an outpatient to make sure the incontinence resolved itself as he matured. After all, he was 5 weeks early. A couple of days later, Alex was brought to my room and Adam and I got to spend our first night with him. We were told we were going home on Sunday if he continued to eat well and his blood sugar stabilized. YES! I could not wait to put him in the car and drive home. Sunday morning, I went out to the car and brought up the car seat for inspection. We were going home! Adam was busy cleaning up the hospital room while I fed Alex before the ride home. And that is where everything changed.

A group of doctors entered my room and started talking about Alex’s “dribble”. It seemed to be a little bigger of a problem than we were led to believe. They were concerned that he would get an infection, since they were unsure if he was retaining the urine in his bladder. The pediatrician that was on call that day did not feel comfortable discharging him home until they had a clearer picture of what was happening with it all. So, I was discharged and Alex was taken back to the NICU. We were devastated, confused, and frustrated. We wanted answers. What could be wrong? How long was he going to have to stay? The answers would have to wait a day until the doctors were there…

We went back up to the hospital the next morning, very early, in hopes of catching the doctors when they did their rounds in the NICU. Alex looked fantastic…..he certainly didn’t look sick. The neonatologist that was in charge of him that day came around with her students. We started asking questions and, to our surprise, got a lot of blank stares. They were not sure exactly why he was there, but she assured us that she would find out. A couple of hours later, she did come back and explained that the pediatrician that we saw the day before had put in an order for a nephrology consult to make sure he wasn’t experiencing kidney reflux. She felt that if the nephrologist felt comfortable sending him home, then he would come home that day. She also told us that when the doctors saw the “dribble”, they ordered an ultrasound and an x-ray to look at the bladder and the kidneys. They looked normal, but the x-ray is where they saw the absence of the tailbone and then she told us that part of the sacrum was missing as well. That’s all she said…again, we were left to wonder what that all meant. We waited and waited for the nephrologist…and finally he arrived. He ordered a VCUG study, which pushes a dye up into the bladder so they can see if, indeed, it is backing up into his kidneys. We consented for the study and were able to go with him while it was being done. The radiologist didn’t seem to think he had reflux and said he would be sending the full report to the nephrologist. When we arrived back in the NICU after the study, the nephrologist was there and talked to us about his plan of action. He wanted to put Alex on medication to relax the bladder, a prophylactic antibiotic to ward off any potential infection and straight cath him 3 times a day to empty the bladder. We asked questions…we asked a lot of questions. Why did he want us to cath him if he there was no residual in the bladder? Wouldn’t that introduce the chance for more infections? He wanted Alex to remain there one more night and for us to return in the morning and learn how to cath him, since it is a sterile process and could be potentially dangerous. Again, we went home confused, frustrated and angry. We talked to a few people, did a lot of research on the internet and came to the conclusion that we wanted a second opinion. We decided that we would tell them that and ask that he be discharged.
Once again, we arrived early the next morning and let the nurses and doctors know of our plan. Everyone seemed to understand and the discharge papers were started. They sent us home with catheters and medication…..I guess just in case we changed our minds. We had an appointment made with Alex’s primary care provider for two days after the discharge and we would discuss our concerns with him. So we FINALLY brought our son home. It just felt so wonderful to be home…all of us.

Two days later, we took him to his pediatrician. He had received the full report from the NICU and had done some research that morning, so he was ready for our questions. He suggested that we make an appointment with a pediatric urologist first to figure out what was happening with his bladder, but WV did not have one in the state at that time. He suggested a doctor in Akron, OH at the Akron Children’s Hospital (he completed his residency there). He then began to talk about his “condition” with us. I didn’t know he had a condition…..he called it Caudal Regression Syndrome. He said that most kids with this syndrome never walk. He went on, but to be honest, I stopped listening at that point. That was all I heard…..my son will never walk. Caudal Regression Syndrome???? What is that? I had never heard of that and this was the first time we had ever heard of it, but he read it right off the discharge summary from the NICU. He said we would need to see a urologist, an orthopedist, a neurologist and yes, a nephrologist. Here we go again.
We came home and I immediately started researching. Wow…I was blown away. This was way more serious than what the doctors in the NICU led us to believe. But I still didn’t understand. He certainly didn’t look like anything was wrong with him. We got approval from our insurance carrier to have his care transferred to OH. We wanted the whole team in one place.

So, we have seen all the specialists now. And I am smiling. The orthopedist does not have any doubt in his mind that Alex will walk. He has great movement in both legs, he bounces on them when you stand him up, he pulls his legs up and tries to crawl when he’s on his belly and his hips are perfect. The neurologist doesn’t see anything abnormal…all the reflexes are great and he is progressing normally for his age. The nephrologist (in Akron, NOT in WV) agreed with our decision to withhold the medication and not to cath him! (Thank God for that!) The urologist is going to do a few other tests, but other than that, not much needs to be done right now. He’s a baby…he’s going to be incontinent! (his words, not mine) We are so relieved……we were ready for anything, but to hear the doctors say that he is just a normal little baby who is growing and progressing like he should is just such a relief.
Yes, he does have caudal regression syndrome. Fortunately, it is not serious and it will not likely affect any of his developmental milestones or mobility. I love my son. I have loved him from the minute I found out I was pregnant. He is one of the most beautiful little babies I have seen (1 of 4!!)….he is smiling now, although, only at me (hehe), is cooing, holding his head up and scooting when he’s on his belly. Life is so, so precious. All of my kids remind me of that every day. I can hardly wait to see him tonight, tomorrow, 6 months from now and years down the road…he’s going to do great things!