Update regarding Preston's ears...

Today we traveled to the SouthPark Campus of CEENTA (Carolina Ear Eye Nose and Throat Associates).  The kids did pretty spectacular considering this was Day Five of Appointment Week in our house! Dr. Mair was an amazing and informative Doctor who is wonderful with his young patients.  He was very informative about what was going on with Preston's ears and even showed me in pictures and took the time to explain how it can easily be confused by a Pediatrician.  Preston has fluid that is constantly just sitting in the back of his ear drum.  This is causing the frequent ear infections and is possibly the reason why he is slightly delayed in his Social/Personal skills.  I did not mention this delay when I was discussing his 6 month check-up because I am slightly devastated.  If you know me personally you know that I pride myself on being very involved with my children and doing all that I can to teach them through play.  I took this delay as a personal failure.  Yes, even though I am fully aware of the fact that it is most likely due to all of his complications....I still took it personally...imagine that :) Dr. Mair explained to me that the sounds that Preston is hearing are more than likely "dulled" due to the fluid. Basically, Preston is not getting the full range of tones that he should.  This is causing him to not be able to mimic the different sounds that we make.  He does make noises but they are just squeals of happiness.  Hopefully, we caught this early enough that we will not see any delays in his speech.  They are going to coordinate with the Urologist as soon as possible and we will be on the road to a happier, healthier, more talkative baby!

Pictures for Grandpa and Marlene!

Lab Horror

Okay, maybe the title is a little dramatic! I had to take Preston to get his blood drawn and he had to be stuck twice.  My poor little boy was screaming and hollering and his sister was very concerned about the "holes" the nurse was putting on her brother! The nurse had to call in another nurse to help her because his veins were so small.  It was the longest 20 minutes I have experienced in a while. I have become numb to these experiences and I dealt with it well.  We had lunch in the cafeteria and visited the NICU nurses.  It was like a flash back.  When we first got to the hospital Lily said, "This is where Preston lived".  She then proceeded to tell me stories about Preston and the other sick babies! I am shocked that she remembers so vividly!

Hypothropic Cardiomyopathy

We had our follow up appointment to Preston's Cardiologist on Monday.  I went in expecting him to be cleared because our first visit seemed very positive.  At his first visit the Pulmonary Hypertension had disappeared and he said that the thickening of the heart muscle had already decreased.  I went in thinking this would be like the last appointment.  Well, this time was a different story.  When I took Preston in with Lily to do the Ultra Sound he was not very happy about it at first.  I had to hold him down and soothe him and eventually I was able to get him to relax and fall asleep.  The Ultra Sound tech seemed to be taking a lot of pictures and this was the first thing that made me nervous.  The second sign was when the doctor came in with the look of sadness on his face.  I just knew that Preston was not going to be cleared.  Now, as a mother this is the worst thing to ever deal with.  I must say that I have learned to deal with these situations fairly well.  I shut down partially and put on my happy face.  I listened to what the doctor said but inside I was having an emotional panic attack.  I mean...who wants to hear that their sweet little baby may have a heart disease? To top this all off the Cardiologist stated that if he does have this disease that we may have to go to genetic counseling and have chromosomal testing done to determine where he got the disease.  There are two things that I thought about with this testing: 1. What if it is MY fault? What if it is my genes that made my child unable to live a normal life? 2. What if Lily has it too?. Yes, I was in full swing internal panic mode at this moment.  The doctor told me not to panic (yea, okay!) and that Preston is a normal baby who can cry and be fine.  They said that they want to do a follow up in 6 months before they will confirm Hypothropic Cardiomyopathy or clear him if he shows improvement.

What is Hypothropic Cardiomyopathy? Basically, one of the muscles in the heart is thicker than the others.  This can lead to blockages or clotting and can cause a young child who is physically active in sports to fall over dead.  You hear about this on the news.  The good thing about this....most people have NO idea that they have this disease...Preston is lucky enough to know.  KNOWING MEANS PREVENTING! If he has this disease we will have to have a huge lifestyle change.  We will have to make sure that Preston is super healthy with minimal exercise which means most of his health will depend on the food he eats.  I will be the mom who who eat baked tilapia with my boy while everyone else eats hamburgers if I have to! Anything to make sure that he gets to live a long and healthy life! I have looked into this disease only briefly because I do not want to freak myself out.  I am only basing my opinions in this paragraph based on a few articles that I have read.  If anyone else knows information please share :) If some of the information is not 100% accurate...be aware that in 6 months if he is diagnosed...I will know everything there is to know about it and I will correct any mistakes that may exist! :)

May 2012

Well, it has been a VERY long time since I have last posted! Life with two is a lot more complex than I ever imagined.  At the moment I am a stay at home mom and it is mind blowing that I NEVER get anything done, I am always dressed like a bum, and I am exhausted at 8pm! How does this happen? I know! I RUN around like a mad woman all day trying to keep my two little ones happy.  Preston has had a battle with ear infections. This Sunday he will be 6 months old and so far he has had 5 ear infections in 5 months.  Right now he is on antibiotics for an ear infection and has an appointment to get tubes this month.  Poor Preston has not gone 3 weeks without experiencing some type of pain.  He had a double ear infection and RSV 3 weeks ago.  The ear infections were so bad that the antibiotic did not kick in for 3 days and he screamed all day and night.  When I took him back because there was not an improvement they tested him for RSV and it came back positive.  It has been quite a road for Preston.  I do know that he is better off than most of the kids that contract CMV in utero but it is still such a different life in comparison to when Lily was a baby.  Preston is finally the happy baby that he deserves to be.  He finally smiles all of the time and "talks" to you when you talk to him.  He went to Baptist last Thursday for his Audiology appointment.  He passed all of his test and they did an additional test to check fluid in his ears because of the number of ear infections.  The results showed some fluid in his ear...and sure enough.....2 days later he started waking at night in pain...and had a confirmed ear infection 4 days later.  He goes to the Cardiologist in 2 weeks to be cleared for surgery by Urology and the ENT for tubes.  I was proactive about his stress to his heart and am in the process of coordinating both surgeries at the same time so that he only has to be put to sleep once.  I don't want to risk anything because he had the pulmonary hypertension and still has the thickened heart muscle. I hope that he will be cleared by cardiology for the thickened heart muscle. Preston still has therapy twice a week.  They say that he is doing wonderful and that he dodged a bullet.  He rolled over at 16 weeks and he sits supported.  He had head lag but he has greatly increased his strength in his neck this past month.  His core and legs are getting much stronger.  Lily is a nonstop talking machine.  She is getting so big so fast and it amazes me everyday that she watches me and copies everything that I do.  (Must be careful of what I do/say) She is going to be three soon and I can not believe it.  Where did the time go? We are having an Ice Cream Sundae Party and swimming in the Pool.  Nothing fancy just simple and fun.  We are heading to the beach....Preston is staying with his Grandparents.  It is going to be fun to enjoy Lily at this age and not have to worry about Preston ....he is so little that he would have to be held at all times.  I will miss him dearly though! I also think that it is a much needed and deserved break! I am so grateful that Brandon's parents offered to keep him.  I hope that we can FaceTime with Wayne so I can see him everyday! When we get back we have 3 appointmens and then the last week of May are his surgeries and my Mom's surgery.  I pray for healthy healing!