I feel silly updating this with the news we received today. But the intention of making this blog was to keep people updated on Lil Bill. So updating I will do.
Well today was an informative day. We went to a new pediatrician. Our old pediatrician recommended that we see someone else for primary care for Lil Bill, this new doctor does primary care for medically complex kids and kids with special needs. I was hesitant on making the switch, for various reasons. I liked our old pediatrician he was always good to us, he called us personally a couple times. Everyone from the nurse who answers phones and deals with their faxes, to the doctor, and the nurse who took vitals knew us because of us coming in so much, because of paperwork going back and forth, I felt comfortable.
The other reason I was hesitant was because, well I do not suppose its any parents dream to take their child to primary care at a special needs and medically complex clinic. I guess a part of me was still in denial, that Lil Bill's issues were not going to be long term. Well today that denial burst. I am sure it will come back. Around my son, their are several layers of denial.
Today we met with this Doctor. Wonderful man, probably one of the most polite, caring, personable, and experienced Doctors that I have encountered with my son. He spent two hours with us, talking with me and Billy and interacting with Lil Bill. He truly listened to us and he was honest with us as well. It must be so hard for such a nice man to be in his career choice, working with medically complex children and special needs children. Because to be so nice, and have to tell parents upsetting news about their child must be difficult.
Today we were in that difficult situation. Let me first start off by saying me and Billy have been being prepared for the day like today, since a couple days before Lil Bill was even born. And after that day too. Different doctors on different occasions, they have all been planting seeds in our heads and trying to make the blow that came with this day lighter. And for that I am grateful because it worked in some sense.
Today the Doctor diagnosed Lil Bill with spastic quadriplegic cerebral palsy. Up until now we were being told he was too young to diagnosis and we would wait and see. He disagreed. He said knowing what Lil Bill's brain scans look like, and knowing what he is showing us now and his whole history he does not think he is too young. I thought I was handling this conversation pretty well, until he looked at me with concern and said in such a caring voice, 'do you need a tissue?'
Even though we have been prepared for this I cannot help but feel sad. And scared. Lil Bill has hearing aids, we found out yesterday he is near sighted and he is almost at the point he will need glasses, he has different airway issues, sleep apnea, bpd or chronic lung disease, he has all these issues. And now this too. We have been prepared for all this issues, being told they may happen, but its easy to think that, only one will happen, or that we will be the exception. But we aren't. We have beaten the odds of survival, given a 25 percent chance to live, but we have not beaten the odds for other issues. I cannot help but feel guilty every time, cause everything can be traced back to him being born early.
But I remember when he was a couple days old, and they told us to get involved because that might be the only time we had with him. And I remember hoping so bad that he would pull through, no matter what came with it. How can I stay feeling sad? I got what I wanted. After losing Aiden and everything we went through to have Lil Bill make it to a viable gestation age, and seeing what looked like torture at some points to keep him alive, how can I not be grateful? We all made it out alive. I may have a medically complex and developmentally delayed baby boy, but I have a baby boy. I have a precious, happy, energetic, strong little boy who finds so much comfort in my arms. What a miracle that is.
So now with this diagnosis, nothing really changes. We are already physical therapy, occupational therapy, and feeding and speech therapy. We already do stretches with him multiple times a day, so we are just still waiting and seeing what Lil Bill is going to do. I found a place in Canada that does an intense therapy with children with CP and other issues, I asked the doctor what he thought about it. He told me not to run off to Canada just yet. He said Lil Bill might not need it. What a relief that was. I have hope, the doctor has hope, we do not need to do something extreme like that. He said Lil Bill is still so young, he has plenty of time to show us what he can do, learn and develop at his own pace before taking interventions like that. It was really nice to hear.
I am one to kind of look at the negative side of things, and Billy the positive. Finally, I feel like I can see the positive like Billy. I am grateful for my son and hopeful. He may be able to do more than we believe or think. And I feel empowered to help him get there.
So spastic quadriplegic CP is when all four limbs have tight muscle tone. It is a scary name, to me at least, but the outcomes of children vary. We still do not know what path Lil Bill will go down. Oh, I almost forgot to ad, they want Lil Bill's weight gain to slow down! They said that in the height/length percentage he is in the 95%. They are changing his diet. I thought, what a funny problem to have. All his life we have celebrated every ounce he has gained! And now they want him to slow down, life is funny!
So the last thing I will say is that I went to therapy a couple times when Lil Bill was in the NICU. The therapist was talking to me about raising a child with special needs. She said that the feeling I will get when he learns to feed himself will be the same feeling another parent gets when their child scores a goal in soccer. I believe that today. Our accomplishments might end up being different from others, they may not but they very likely might be. But they will be ours, and they will be beautiful and wonderful.
Thursday, September 12, 2013
Thursday, September 5, 2013
A look at the past...
While I am sitting here waiting for the first football game to kick off, thanks weather delay, I remember this time last year. I remember watching the first game and thinking, if we can just get through this season and lil bill is still alive then we will be ok! Well little did I know that he would be home in time for the Super Bowl, and here we are the next year.
So it is official, Lil Bill is a one year old! I can not believe it. His birthday was a beautiful day. We stopped by the NICU and dropped them off some birthday treats then had a party with family and some friends. I thought that I would have negative feelings on his birthday. While it was his day of birth it was also one of the most traumatic days of my life. But I didn't. I embraced every ounce of gratitude I felt. We have come so far. I have been doing alot of processing everything that has happened since we found out that I was pregnant lately. Since medically, there is nothing to new with Lil Bill I thought I would update share some of our story of how Lil Bill got here. Don't worry I won't go TOO far back!
We knew that I was going to be a high risk pregnancy after losing Aiden at 20 weeks. But we thought we had a plan that would work. For me the first trimester was not scary. I know for many people it is, because of the risk of miscarriages. I knew, having an incompetent cervix my issues would make the 2nd or 3rd trimester the problem. So lets fast forward to then.
When I was 18 weeks, I finally got the cerclage, with little to no cervix left. For those who don't know an incompetent cervix means the cervix shortens and softens way before it should in a normal pregnancy. A normal pregnancy the cervical length is suppose to be about 3-4 cm until the end of pregnancy. At the time I got the cerclage my cervix was .9mm. But for a couple weeks it worked, I did not lose any more length and I became hopeful. But then, at one of my weekly ultrasound appointments it was seen that my cervix was .3mm. One of my doctors suggested putting a pessary in. I was willing to do anything to help. So we did, and for two weeks my cervix was back over 1 cm. I was so happy, the pessary was working! And then, I will never forget this day.
I was 22 weeks pregnant and we went in for my appointment. The doctor came in with a discouraged look on his face. He told me that it appeared from the ultrasound that I was dilated, and my membranes aka the water sac the baby was in, was bulging through the cerlcage. He told us we had three options. We could terminate the pregnancy if we did not want to have a very premature birth that would leave us with a child with disabilities, we could go home and let nature take its course, or I could be admitted into the hospital and stay on bed rest there until the baby came. We chose option number 3.
Days later, I believe around 22 weeks and 5 days, I was 3 cm dilated. I was told that they could not try to stop labor until I was 23 weeks and they would not try to save the baby unless he was 23 weeks. 2 days. 2 days. 2 days. Days that could be wrong due to measurements, but that did not matter. We had to wait 2 days before any intervention could be taken. Those were the 2 most stressful days of my life. I went into labor one day later, and I remember them telling me if it was 16 hours later they would try to stop labor, but there was nothing that they could do at this point. 16 hours! That was way more ridiculous than two days. I do not blame the doctors or nurses who were telling me this. I know a patient like me at that time is very stressful for them too. They have to deal with ethics, morals, rules, and guidelines. I just prayed for strength to make it through 16 hours.
Luckily, due to a paperwork mess up somewhere, I was given the steroid shots for the baby's lungs one day before I was suppose to. During these 16 hours we got a chance to speak to the NICU. Twice. We got numbers, odds, chances, and statistics. We were told what to expect if we had him between 23-24 weeks. The odds were not good. They said he would have around a 25 percent chance of making it.
FINALLY the time came, I was FINALLY 23 weeks! They would try to prevent labor and they would try to save my son if he came. I was so relieved to make it this far. I was started on a drug to slow down labor. The side affects were horrible. I felt like I was being burned from the inside out. I felt like crap but did not feel any serious contractions. I was on the drug overnight from 8/30-8/31. I was hoping for good news. A couple hours later I started feeling contractions. I was checked again, this time, I was not 3 cm dilated, I was 9 cm dilated. They said it was time to start pushing.
My water had not broke. And they did not want it to. They wanted my son to be born in his water sac to help protect him. He was 17 weeks early, very tiny, and breech. We were very fortunate that his water did not break. Yes, I delivered my son in his water sac, with no pain meds (not by choice may I ad). After having him, the water sac was given to the NICU team, I do not even know how many of them there were, maybe between 5-10. It felt like forever they were over there, asking for supplies, talking with themselves. I think it was only a couple minutes though. I just wanted to know is he alive, is everything okay, is he dead? Eventually we heard them yell YES! and clap. I remember Billy saying well that can't be a bad sign.
Then, the first time I saw my son. They wheeled him over. He was in a plastic bag with a tube sticking down his throat. He looked brownish/redish and was so tiny. He was 1 pound 7 ounces and 11.25 inches long. He looked lifeless. I remember them asking if we wanted to touch his forehead. Everything in me said no. I was too scared I would give him germs and make him even sicker. But I did, I touched his forehead. I was fearful, I was sad, I was angry, and I had no clue what kind of journey was started that day. It was the beginning of a beautiful, terrible, amazing, difficult road. The road that has led me to where I am today. With a one year old son, who is the strongest and happiest person I know.
Like I said earlier, his birthday is one of the most traumatic days of my life, but is also one of the most beautiful because I witnessed the greatest miracle I have ever know, and it started that day.
Since pictures are worth a thousand words, Heres A Video of Some of our Story
So it is official, Lil Bill is a one year old! I can not believe it. His birthday was a beautiful day. We stopped by the NICU and dropped them off some birthday treats then had a party with family and some friends. I thought that I would have negative feelings on his birthday. While it was his day of birth it was also one of the most traumatic days of my life. But I didn't. I embraced every ounce of gratitude I felt. We have come so far. I have been doing alot of processing everything that has happened since we found out that I was pregnant lately. Since medically, there is nothing to new with Lil Bill I thought I would update share some of our story of how Lil Bill got here. Don't worry I won't go TOO far back!
We knew that I was going to be a high risk pregnancy after losing Aiden at 20 weeks. But we thought we had a plan that would work. For me the first trimester was not scary. I know for many people it is, because of the risk of miscarriages. I knew, having an incompetent cervix my issues would make the 2nd or 3rd trimester the problem. So lets fast forward to then.
When I was 18 weeks, I finally got the cerclage, with little to no cervix left. For those who don't know an incompetent cervix means the cervix shortens and softens way before it should in a normal pregnancy. A normal pregnancy the cervical length is suppose to be about 3-4 cm until the end of pregnancy. At the time I got the cerclage my cervix was .9mm. But for a couple weeks it worked, I did not lose any more length and I became hopeful. But then, at one of my weekly ultrasound appointments it was seen that my cervix was .3mm. One of my doctors suggested putting a pessary in. I was willing to do anything to help. So we did, and for two weeks my cervix was back over 1 cm. I was so happy, the pessary was working! And then, I will never forget this day.
I was 22 weeks pregnant and we went in for my appointment. The doctor came in with a discouraged look on his face. He told me that it appeared from the ultrasound that I was dilated, and my membranes aka the water sac the baby was in, was bulging through the cerlcage. He told us we had three options. We could terminate the pregnancy if we did not want to have a very premature birth that would leave us with a child with disabilities, we could go home and let nature take its course, or I could be admitted into the hospital and stay on bed rest there until the baby came. We chose option number 3.
Days later, I believe around 22 weeks and 5 days, I was 3 cm dilated. I was told that they could not try to stop labor until I was 23 weeks and they would not try to save the baby unless he was 23 weeks. 2 days. 2 days. 2 days. Days that could be wrong due to measurements, but that did not matter. We had to wait 2 days before any intervention could be taken. Those were the 2 most stressful days of my life. I went into labor one day later, and I remember them telling me if it was 16 hours later they would try to stop labor, but there was nothing that they could do at this point. 16 hours! That was way more ridiculous than two days. I do not blame the doctors or nurses who were telling me this. I know a patient like me at that time is very stressful for them too. They have to deal with ethics, morals, rules, and guidelines. I just prayed for strength to make it through 16 hours.
Luckily, due to a paperwork mess up somewhere, I was given the steroid shots for the baby's lungs one day before I was suppose to. During these 16 hours we got a chance to speak to the NICU. Twice. We got numbers, odds, chances, and statistics. We were told what to expect if we had him between 23-24 weeks. The odds were not good. They said he would have around a 25 percent chance of making it.
FINALLY the time came, I was FINALLY 23 weeks! They would try to prevent labor and they would try to save my son if he came. I was so relieved to make it this far. I was started on a drug to slow down labor. The side affects were horrible. I felt like I was being burned from the inside out. I felt like crap but did not feel any serious contractions. I was on the drug overnight from 8/30-8/31. I was hoping for good news. A couple hours later I started feeling contractions. I was checked again, this time, I was not 3 cm dilated, I was 9 cm dilated. They said it was time to start pushing.
My water had not broke. And they did not want it to. They wanted my son to be born in his water sac to help protect him. He was 17 weeks early, very tiny, and breech. We were very fortunate that his water did not break. Yes, I delivered my son in his water sac, with no pain meds (not by choice may I ad). After having him, the water sac was given to the NICU team, I do not even know how many of them there were, maybe between 5-10. It felt like forever they were over there, asking for supplies, talking with themselves. I think it was only a couple minutes though. I just wanted to know is he alive, is everything okay, is he dead? Eventually we heard them yell YES! and clap. I remember Billy saying well that can't be a bad sign.
Then, the first time I saw my son. They wheeled him over. He was in a plastic bag with a tube sticking down his throat. He looked brownish/redish and was so tiny. He was 1 pound 7 ounces and 11.25 inches long. He looked lifeless. I remember them asking if we wanted to touch his forehead. Everything in me said no. I was too scared I would give him germs and make him even sicker. But I did, I touched his forehead. I was fearful, I was sad, I was angry, and I had no clue what kind of journey was started that day. It was the beginning of a beautiful, terrible, amazing, difficult road. The road that has led me to where I am today. With a one year old son, who is the strongest and happiest person I know.
Like I said earlier, his birthday is one of the most traumatic days of my life, but is also one of the most beautiful because I witnessed the greatest miracle I have ever know, and it started that day.
Since pictures are worth a thousand words, Heres A Video of Some of our Story
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