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!

Devil Mommy

Well, I feel like an ass for complaining! But, luckily despite the long and weary nights I was able to see straight and see the blood in his poop.  Turns out my baby is not the devil.  He has a milk protein allergy and needed to be put on special formula! I can NOT describe to you the difference in my child.  He is completely and totally happy, calm, comfortable, and just plain adorable! He was adorable before...but now that he is amazingly wonderful...I think he is even more adorable! He has gotten rid of the ear infection, has developed thrush, and has a milk protein allergy....on top of all the issues he had when he was born! Poor guy has had a tough first 3 months of life! I am glad that the future is looking much better for him!

Lily is such an amazing big sister.  She is so loving and helpful.  I am very grateful that she is so willing to help.  She is my little spitting image.  She does everything just like me and it is hilarious! We are all now happier because Preston is happier! Life is good.

Devil Baby

I love my children...but I am about to complain about the screaming baby...so if you think this is TABOO...then don't read the damn thing! So, my sweet devil baby has had two ear infections in the past 3 weeks.  We have been on antibiotics for about a week now and he has developed red ass which I am assuming is from a yeast infection caused from the antibiotics.  We are using his Nystatin and it has cleared up.  He has become pretty high maintenance and I am growing very tired.  Sleepless nights are starting to wear me down.  Preston is very different than Lily was.  Now, Lily was NOT perfect but she slept! Lily was like Preston in the sense that she liked to be held for a while in order to go to sleep.  Preston needs you to hold him for OVER an hour.  He will NOT cry it out like some babies...he is short tempered and will not stop crying.  I believe he will be the baby that will pass out from holding his breath when he gets older! I know, this too shall pass and he won't always want me to hold him.  Also, I know that when he was born I was terrified he wouldn't make it and now I am complaining....well, sorry.  You run off of 2 hours of sleep and hear screaming almost 24 hours and day and tell me that you won't be upset.  This is the reality of parenthood.  It can suck sometimes.  But, it's the moments that they look into your eyes and smile that make it all worth it! Preston fought sleep last night...but once he fell asleep he did well.  I hope that today is better than yesterday. Yesterday was very rough and I almost cried a few times. I am grateful that I was able to get out and walk otherwise I would have went insane.  I think that I need some adult time.  Like a day.  I am done complaining:) Preston is sleeping so I am going to take a shower IN PEACE! Oh, just in case it doesn't SOUND like I love my kids...I do.  I love them VERY MUCH.  Don't judge me! This blog is for me to deal with my stress and to let my family and friends see what is going on in our lives.  It's not always butterflies and lollipops.  Sometimes, I want to scream.  This is how I deal with those times!

So many Doctors....So little time!

The other night I decided it was time to read my last blog entry and start blogging again.  I sat down and started to read the words that I wrote and tears started to roll down my face.  Did I really write those words? The sequence of events were so unexpected and it all happened so fast and then the days...they felt like forever yet they flew right on past.  All the days were running together and I could not focus.  I am not sure how I wrote a 12 page paper in 2 hours.  I am not sure how I managed to hold it together for Lily and pump all day and night for Preston while he lay helpless in the NICU.  I am not sure how I was even able to concentrate enough to drive because I was sleep deprived from sitting up all night with Preston and hanging out with Lily during the day.  Yet, that all too well known phrase, "God never gives you more than you can handle" was screaming in my ear if I ever questioned why this happened to us.  Preston is a fighter and came home after 16 days in the NICU.  I can tell you that 16 days doesn't really sound like a very long time...but it feels like forever when you sweet little boy is laying helpless and fighting off a virus in the intensive care unit. 

Preston was born on Novemer 13, 2011 weighing in at 5 pounds and 15 ounces.  He was in such distress that he had a bowel movement while in utero and was swimming in his meconium.  When he was born he was stained from head to toe..he looked awful.  He was born with CMV, Pulmonary Hypertension, he had a thickened heart muscle, Pneumonia, and he had petechiae all over his body (busted blood vessels that look like a rash)

It is amazing that in 16 days this small miracle overcame all of these obstacles! Preston has amazed us all.  The CMV can possibly create vision, hearing or development issues as he gets older.  As of now he has passed his hearing test, his Brain Ultrasound came back normal, and the Optometrist said that he does not have any signs of CMV Retinitis which is great! The Cardiologist said that his heart muscle has decreased in size and that the Pulmonary Hypertension is completely gone! He suspects that the heart muscle will be completely normal by the time Preston is 6 months old! I know that God listed to all of our prayers and I thank you all for praying for our family! 

Just in Time....

It is funny how things happen to you that you never expect would happen......

My entire pregnancy was pretty textbook.  I complained about the discomforts of pregnancy....this second go around was a lot more uncomfortable than my first.  I had the heartburn, pregnancy induced carpal tunnel, swelling, had to go twice for the 3 hour gestational diabetes testing (only for them to come back negative), and the basic pregnancy complaints.  Yet, overall my pregnancy was textbook.  I didn't have any scary ultrasounds and I never came down with the flu or had any scares.  I never even worried about the delivery.  I mean....if your first delivery was pretty perfect....why would you think that the second one would be any different?  Everyone would say...the second one comes faster! Make sure and get to the hospital in time! Lily pretty much flew out and I did not feel a thing! SO....as Lily says it best...."Baby Preston's gonna POP out".  So, when I started to lose my mucus plug on Thursday November 10th, 2011 .....I figured I would deliver Preston by the next day.  Remember, that is what happened with Lily...and second pregnancies are always faster and easier...right?!  I went to my doctor's visit at 2:40 and everything looked good.  I was measuring right, heartbeat was good, and I was 2cm and 50% effaced. The doctor asked me about his movement and I said that it had decreased and she told me to pay attention to it....he should move at least once an hour.  He is getting cramped at this point but I should at least feel a few jabs from him.  

 Note: This is where things are starting to look NOTHING like Lily.  I never dilated or effaced early with Lily.  I just went into labor and went from 0 to 10 within a day of labor pains.  

On Friday my mom and I walked the mall with Lily and Cody.  It was Veteran's Day and we thought we could snag up some clearance deals (we are some thrifty women!).  When I got home my mucus plug started to come out more and I was excited! It would only be a matter of hours and I would be in agonizing pain and meeting my sweet boy! Well, that was not the case.  Just more discharge, blood and some cramps.  That night I started to have contractions but they were too far apart.  And, if you have ever had a kid before...you don't want to go in to the hospital and be sent home.  You know that you are supposed to wait till you can't talk/walk through the contractions and they are 5 min apart.  So, I waited...and waited....and paced the floor.  I finally fell asleep and woke back up with more discharge.....but as far as contractions....only every 20 minutes and I could walk.  So....I keep convincing myself that it's going to happen soon! I call my mom to get Lily so I can go walk the baby out.  B and I go shopping so we can walk and maybe speed up the process.  Not really helping.  I get home and play outside with Lily and then I start to feel very annoyed.  I am not sure if it was the hopes of meeting Preston or maybe it was that I was tired.  Either way....I took Lily to her Grandma Puddin' and I went home and showered.  And GUESS WHAT?! Yep, contractions.  6-7 minutes apart and hurting enough to stop me in my tracks and shut me up! We put the stuff in the car and head to Petco....weird right? Oh yes....this crazy mommy had promised Lily that Preston was going to get her a fish...well, we had not bought one! So, we were going to get the fish and if the contractions were still as strong we would head to the hospital.  We get the fish and the contractions go away.  What the hell?

I go home and do homework while Brandon puts together Lily's fish tank from Preston.  No contractions.  

So, I start to type in phrases on google:

"mucus plug + spotting + 38 weeks"

"fetal movement + 38 weeks"

(you get the idea)

Well, of course when you attempt to use Google as a research portal  most of the information you get includes Discussion Forums.  I read a few and I feel slightly okay with the happenings.  Your plug can fall out weeks before, light spotting is normal, and the baby is getting large and cramped. The key phrase that stood out was, "it is better to be safe than sorry". I researched possibly reasons of bleeding and some of the results were terrifying!  I went to bed and I waited to feel him move.  He moved a little but it was not strong.  I had contractions on and off all night and would wake with concern.  I decided that it is better to call and be safe.  So, I called the call service for my office (remember, it's 7 am on a Sunday) and when they answered...I hung up.  All I could think is that we are going to go and we are going to get sent home and then I would feel stupid.  But, I thought about Preston and was worried about his movements and how I had been contracting for 31 hours.  I called and the midwife called me back.  I explained everything and she said to come in because we were better safe than sorry!  So, we got in the car and headed to the hospital.

When we got there I was not having any contractions.  The nurse hooked me up and checked me.  I was still only 2 cm dilated and she did not see any blood or discharge that was abnormal.  At this point I was sure that I was going home.  Then, Preston's heart rate dropped.  The nurse rolled me over.  It stabilized.  Then it dropped, again.  After a few times of this happening my doctor came in and decided that she was inducing me.  After a few hours of contractions and Preston's heart rate decelerating he finally stabilized.  She broke my water, and attached a heart monitor to his head and inserted an amnio fusion (which is basically a small hose inserted into the cervix and flushes out the uterus and comes back out of the vagina.  She cleared me to get an epidural which interestingly enough allowed me to relax and in turn allowed Preston to relax.  His heart rate never dropped after that point.

I felt intense pressure after she told me I was 7 cm....she checked me again and I was 9cm.  I felt pressure like I had never felt before.  I looked at my doctor and I said...."I am NOT supposed to be feeling all of this"!!! She smiled at me and said "PUSH".  At this point I had to concentrate.  It hurt like hell but I had heard the doctor call in reinforcements and I was concerned.  I gave it my all and within 10 minutes Preston was out.  I felt the biggest relief in the history of my body! I NEVER felt any of that with Lily! I look down at Preston and he is covered from head to toe in meconium.  He was stained from the meconium in his amniotic fluid.  Brandon was not even able to cut the cord.  They rushed him over to the incubator and then rushed him out to the NICU.  When they opened the door I saw my mom holding Lily and Brandon's parents and I realized that I just gave birth and I was not going to be able to hold my baby.....I instantly shut down emotionally.

Now, as scary as it is to have your baby rushed away...I must be appreciative of the fact that he is alive.  The doctor gave me a hug when everyone was out to see if they could see the baby in the NICU....and she told me that she is glad that I called....because I called, "JUST IN TIME".

Sweet Preston was in distress and he may not have made it another day.  I am very grateful for the power of intuition, motherly instincts, and my midwife!

As of today, November 15th, 2011, Preston has shown improvements and is working on being weaned from the ventilator.  I will write more about his issues and treatments in the future.

Thank you for all of your prayers! We love you