Back to Vandy

On Saturday, January 29th Mike was leaving for work. It was 8:15 am and Wyatt and I were laying in the bed "talking". He starting breathing a little raspy (not different from what we had dealt with earlier in the week that his doctor told us was based on position and his ability to swallow) so I picked him up from his back and placed him on my chest, facing me. He immediately quit breathing. I sat up with him hoping he would begin breathing. He didn't. I walked out into the living room and (only by the grace of God) Mike was still home. At this point, he was turning blue. I immediately called 911. While I was on the phone with 911, he went limp and lost all color. During my call to 911, I somehow hung up on them. Mike called them back and I took Wyatt and laid him on the couch. Somehow the Lord gave me the clarity to give him CPR rescue breathing. I tilted his head and gave him two breaths. I could hear the air passing secretions in his throat. I then gave him about 6 or so more breaths and he started to cry. Shortly thereafter the paramedics arrived and brought him to Vandy.

In the ER they took blood to check for all sorts of things. They were immediately concerned that he had RSV or some other respiratory problem. We were moved after about 2 hours to the PICU where we stayed for a day. During our PICU stay Wyatt blew the IV vein he had. Now, mind you the last time he ate was at 6 that morning. I tell you this because it took them 4 hours and 12 people to get a new IV in. They had to use the ultrasound to get it in. So we were moved to the regular floor on Sunday. All of his tests came back for no infection, no RSV or other issue of that nature. Monday, he had another "blue spell". I was alone. I couldn't get the nurse here fast enough so I call the in house first response team. His blood oxygen went from 100 to 75 to 24 in a matter of 30 seconds. Before first response got here, a nurse came in and had him breathing again. At this point they had determined that his issue was structural and not a cold. ENT and pulmonology came in and did an evaluation. They wanted to do a bronchial scope to see what was going on.

On Tuesday he had the bronchial scope thingie which found that he had a compressed airway close to where the lungs split. It was also found that he has tracheal malaysia (or floppy airways).  They weren't sure why the airway was compressed, so they ordered a CT for Wednesday. Pulmonary wasn't sure so they were going to follow up with the CT as well. Now, mind you he went from Saturday morning until Tuesday night without eating. He ate at 8 pm Tuesday night and went NPO again at midnight because he had to be sedated for the contrast CT. When he was able to eat again, they stopped his IV. But, when they went to start it again for the CT, the IV was no longer good. So, after being poked again 3 more times, he had to have a pic line put in. In the meantime, they wanted to check him for reflux so they ordered a pH probe put in. So, Friday at one they put in the pH probe. After it was put in they had to take an x-ray to make sure it was in correctly. In doing this, they found that he had air in his intestinal wall. So, they stopped his feeds, again. One doctor told me that it was a possibility that they would have to do surgery and take our part of his intestines. Of course, I freaked. But after 48 hours of antibiotics this healed. They thought this air was because he had destated a few times.  The intestines require a lot of air and the lack of it can cause air to build in the walls.  From the CT scan, we found that because his heart is on the right side of his chest, his aorta is laying on his windpipe, causing it to compress the lower part of his airway.  We were told that our options were an aortapexy and that a trach was a possibility.  Of course we had no idea whatsoever what an aortapexy was and a trach was not even an option to consider in our minds.  The ENT doctor had told us that a trach had a 1 percent mortality rate for every year it was in.  Even this 1 percent was too much of a risk for us.  The pH probe showed only four spells of reflux in a 48 hour period.  However, because of Wyatt's tracheal malaysia, any little bit of reflux was bad.  So, they started him on Nexium and Pepcid.

After attempting to do research on aortapexy online, I was terrified.  All that I read was that they had to break the sternum to get to the aorta.  Mike and I were both opposed to this surgery.  It was very difficult to reason with a surgery to fix something that only happened from time to time.

Let me stop right here to tell you that these "blue spells" happened every day.  Generally one a day.  They were triggered by his bearing down to have a bowel movement or when he became fussy.  So, anytime he would make a noise, I was at this bedside, soothing, be it at 2 in the morning.  I wasn't sleeping much, but at least he wasn't turning blue.  Most of our days were spent rocking and singing.  I learned quickly that Wyatt loves Fire and Rain by James Taylor.  However, I could not spend my life on pins and needles.  The doctors also said that they would not allow us to take him home as long as he was still having these spells. 

As time went by, a definite decision was not made.  For the most part, all we did was sit in the hospital, rock and see the daily doctors.  Mama was a little frustrated to say the least.  About two weeks in, I had a mini breakdown.  So, our amazing nurse had what the hospital refers to as a Care Conference scheduled for us.  This is where all of the doctors that Wyatt sees gets together with us and we all formulate a plan.  This conference was set for a Tuesday.  ENT and the general peds doctor came.  Our pediatrician also came.  Surgery was late, but they said that they would talk later to him.  Let me also interject that only ten minutes prior to the Care Conference, our pediatrician so graciously told us that she was leaving the children's group we went to and that we would need to find a new pediatrician.  Oh, and then she proceeded to tell us that there was no one left in the group that she would recommend for Wyatt.  Yeah, you can imagine my anger.  So, we had the Care Conference.  During which it was determined that all parties would get together and make a definite plan. 

Thursday morning during rounds, the surgeons came in and told me that they felt as though a Nissen surgery was the right course of action to take.  This would cut down on all of his refluxing.  Score!  We knew this surgery and knew that it was an "easy" fix.  Just as we were given this information, the general peds doctor came in and said that no, this information was incorrect and that they wanted to do the aortapexy surgery.  She told me that they would all talk about it once again and make a determination.  Then, approximately fifteen minutes later, the ENT team came in.  They told me that the aortapexy AND trach would have to be done.  Lets suffice it to say, I went ballistic.  My super sweet nurse  listened to me freak out.  She then called the patient advocate to come talk to me.  The patient advocate is the person who someone would go to just prior to filing a grievance.  We talked about everything that took place and she went into action. 

When the smoke cleared, it was determined that Wyatt would need to have the aortapexy surgery.  This would alleviate the pressure on the airway and help "fix" the blue spells.

I'll take this moment to tell you what an aortapexy surgery is.  Aortapexy is basically where they go in and attach the aorta to the sternum.  http://en.wikipedia.org/wiki/Aortopexy .  As the aorta is pulled up, the connective tissue between the aorta and the windpipe pulls the windpipe open to allow easier airflow.  He will grow with this and as he gets older he just needs to know this in case he needs open heart surgery some day.

In the beginning, Mike was totally and completely opposed to the surgery.  All I knew, was that I wanted my baby to be better.  I didn't want to be afraid to leave him alone for just a second.  Our surgeon, Dr. Lovvorn, came in and explained in great detail how the surgery would go as well as what the risks were and what we could expect.  I did continued research online and found much for informational materials and felt good about things.  Mike also felt good about it.  Apparently, the sternum would not be split.  Rather they go in through the second and third rib to reach the aorta.  Surgery was scheduled for the following Friday.  Dr. Lovvorn told us that he didn't want to rush into the surgery, mainly because he still needed to do research.  You see, not only was Wyatt's heart on the right side of his chest, instead of the left, he had Poland Syndrome.  He had not seen the combination of the two in a child that needed this surgery.  So, they took more x-rays and ultrasounds to map out Wyatt's internal make up.   

Anytime Wyatt has to be sedated through anesthesia, I freak.  We had a mishap in the beginning, although no one is sure why, and I am terrified.  Dr. Lovvorn said that he too was apprehensive and that he asked the cardiac anesthesia team to be in on the surgery for Wyatt. 

Surgery went beautifully.  Dr. Lovvorn was very pleased with the way things went.  The surgery itself took longer than planned, only because they wanted to make sure that they did everything perfectly.

We had been prepared for Wyatt to go to the PICU as well as have a chest tube after surgery.  He was doing so well that they didn't feel the need the put him in the PICU.  We were elated!  He was still sedated from the surgery, so mama went to bed around ten.  Around 11:30, I was awoken to the nurse talking to Wyatt and his monitor going off.

Our time at home

Wyatt's first week home was an adventure, to say the least.  We came home on Friday, December 23rd.  Mike's mom, or Grandma, came to visit.  Wyatt is her first (and only) grandchild.  Her stay had been intended to last a week or so.  However, on Christmas Day received a call from her cousin in Ohio.  Mike's Grandma Chubbuck (Lynn's mom) had fallen.  Now, Grandma Chubbuck is 93 (will be 94 in April or August, I don't remember which) and is amazingly independent.  At any rate, she was walking to the neighbors to take them some salad and slipped and fell.  Did I mention that she lives in Ohio?  Did I also mention that there was 28 inches of snow at the time she decided to venture out?  Anyway, she fell and broke her foot and Lynn had to leave to go to Ohio to be with her.  But, we powered through.

Our routine was amazing.  We fed him every three hours and he was on a continuious pump all night.  We set the pump for four hour intrivials so that we could make sure to change him.  This routine worked so well that Wyatt slept through the night when we first came home.  Ok, I should tell my secret.  This is the same schedule he was on in the hospital.  And, since he was on a continuious pump at night, he didn't get hungry and thus had no need to wake up.  However, at the four hour mark we woke him up to change his diaper but then he went right back to sleep. 

The longer the first week at home went, the fussier Wyatt got.  Until the night before New Years Eve, it was unbelieveable.  Also, this entire day, his apnea monitor kept going off.  I called the peditrician's office and they suggested that we take him to the ER.  So, back to Vandy we went.  Let me also say, that 10 minutes before I left for the ER, my mom and dad came for a visit.  I felt terrible.  The ER doctors did an x-ray and found that his stomach and intestines were full of gas.  They suggested that we legnthen his feeds during the day from 20 minutes (this is the amount of time it takes for the food to go into the G-Tube) to run through the pump for an hour.  They also suggested that we switch his nightly formula feeds to a senstive formula for gas. 

I'm going to pause here for just a moment.  I want to just say that I have always been a pro breastfeeding woman, even before I ever throught about getting pregnant.  My mother breastfed all three of us and to me it just seemed natural.  That's why it was so hard for me to feed my child formula.  Because Wyatt was whisked from me immediately after birth, I didn't get to hold him much.  That coupled with all of the stress of having a NICU baby, my body didn't produce very much milk.  I was able to give him all of the milk I produced, but that was not very much.  Once he was moved into Seven South while in Vandy, I produced more milk and was able to keep up with his supply.  However, once we got home, I couldn't keep up with his demanding little body.  So, I decided that during the day, I would give him breastmilk and at night I would switch to formula.  I wanted to make sure that he was able to get all of the good stuff that breastmilk has to offer. 

Anyway, we switched his feedings to the sensitive formula.  We were also instructed to "vent" his tube before and after each feeding. This was as simple as putting an empty syringe into his G-tube to allow excess air and gas to escape. It's basically like burping him.  Once this routine was established, all was right in the Carcione household. 

For the following two weeks, life was bliss.  We had an incredible schedule that was rarely deviated from.  We saw daddy off to work at 8, ate at 9, played, napped, ate at noon, played, napped, ate at 3, played, napped, ate at 6, played, napped, and then at 9 in the evening, he went on the continuious pump as well as went down for the night.  It worked out so incredible.  During this time home, we were also visited by a nurse from Vandy.  They have a program where babies with special needs gets visited twice a week where they weigh and measure the babies.  They also answer any questions and overall give amazing support. 

Week four at home came with new issues.  Wyatt woke us up one night crying.  This was pretty unusal for him (unless he was dirty).  When I got him out of his bed, he was having issues breathing.  I held him against my chest and he settled down.  I used the suction machine, thinking he had issues with secretions and couldn't swallow.  He drifted off to sleep and so I laid him down.  On Thursday, Becky and I were going to check out a daycare when he had an issue again.  I called our peditrician and they said to bring him in.  He sounded congested and I was afraid he had RSV.  Our doctor thought it might be positional because of the secretions so we left thinking that if this happened again that all we needed to do was lay him a different way.  On Friday, Nurses for Newborns (a different program from the Vandy one) came out to visit and it happened again.  This time, his color started to change a little and I was worried.  The nurse was concerned, but once I suctioned him, he was better.  Of course, this is was the peditrican had told me to do, so I did. 

I will stop right here because at this point, we are venturing into an entirely different blog.

Welcome to the world Wyatt Paul

I want to begin by letting you know where we came from.

At 20 some weeks into my pregnancy, we were informed through ultrasound that I had a two vessel umbilical cord (or a single umbilical artery "SUA"). Basically, during a "normal" pregnancy, the umbilical cord contains one vein (which carries oxygen and nutrients from mama to baby) and two arteries (which move the waste from baby back to mama to be processed and gotten rid of through mama's kidneys). Let me take a minute here to give you some stats about the two vessel cord. The two vessel cord occurs in only 1 percent of "singleton" (or carrying one baby) pregnancies and 5 percent of twin and multiple pregnancies. Researchers aren't sure what causes this, but they think that the second artery disappears at some point early in the pregnancy. SUA's tend to cause preterm birth or stillborn. Women with SUA's are considered high risk because of this. It was also thought to cause lower birth weights due to restricting the nutrients to the baby.

Also during this ultrasound they found that our baby's heart was on the right side of his chest instead of the left. Because of this, we were referred to a Dr. DeRoche, a perinatologist. Let me say how much we LOVED Dr. DeRoche. He was patient and very informative. We saw him monthly for monitoring of growth, and to check the development of his heart. Every month we were able to see our baby and were reassured that everything looked good. Dr. DeRoche thought that our boy's heart was displaced because of a bony abnormality. Because an ultrasound is pretty limited in allowing views of everything, this was his best guess. He could see that his heart was functioning properly and had all of the correct "plumbing". However, because of this abnormality, he suggested that we schedule delivery and do so at Centennial downtown as opposed to Summit (where we originally planned to deliver). He wanted to make sure that everyone that needed to be there was (i.e. the neonatologist). So, we were scheduled to deliver via c-section (only after our boy refused to drop) on his actual due date, November 26.

I won't bore you with everything I went though (i.e. the spinal and stuff). Wyatt Paul Carcione came into this world on his actual due date, November 26, 2010 at precisely 8:00 a.m. weighing in at 8lbs 12oz and measuring 21 inches long. When he was born, he did not immediately cry. They took him to the warmer where we could see them working on him. The nurses kept talking about his big he was and how alert he was. Still, he did not cry. I heard the NICU doctor ask for a larger breathing tube. Then he cried. It was the most beautiful sound I have ever heard on the face of this earth. He was then whisked away to the NICU.

I was moved to the recovery room and the barrage of doctors started to come in. The cardiologist came in and told us that Wyatt had dextracardia http://en.wikipedia.org/wiki/Dextrocardia. Basically, his heart is a mirror image of itself. It is located in the right side of his chest. However, other than it being misplaced, it worked like it should. About two hours after his birth, the NICU doctor came in to let us know that he was doing well. He was on oxygen, but was really doing well.

I didn't get to see my angel until 13 hours after his birth. To say it was love at first sight is an understatement. He was perfect. The next day I was able to hold him. He was having a hard time sucking, so he was given an NG tube (or feeding tube through his nose) until this was remedied. The doctor also told us that the geneticist would talk to us about other "stuff" they found him to have. He had a single simian crease ( http://en.wikipedia.org/wiki/Single_transverse_palmar_crease ) in his left hand as well as a few other abnormalities. They weren't sure, but thought that these issues could all be related to a syndrome. When we finally saw the geneticist she felt as though he had Poland Syndrome.

I will take this moment to educate you about Poland Syndrome because this is indeed Wyatt's "condition". http://www.polands-syndrome.com/ Poland Syndrome is a rare birth defect (occurring on one in every 30,000 live births). It was first named in 1962 and was named after Dr. Alfred Poland who first referenced a similar deformity in 1841. Boys are affected 2-3 more times than girls and 75% of all cases occur on the right side of the body as opposed to the left. Classic features of Poland Syndrome are absent pectoral muscle, brachydactyly (shortness of the fingers), dextrocardia (heart is on the right side of the body) abnormal gastrointestina tract, diaphragmatic hernia, liver/biliary tract anomalies, webbed fingers, hypoplastic/absent nipples as well as a long list of other features I won't bore you with because he doesn't have most of them. Of this list, Wyatt is missing his left pectoral muscle, has shortness of the fingers of his left hand, dextrocardia, hypoplastic nipple on the left side and single simian crease of the left hand. Included with this syndrome is low muscle tone, which Wyatt exhibits. Researchers feel like Poland Syndrome is due to decreased blood flow to the chest, arm and hand region of the fetus in utero. The subclavian artery (the artery supplying blood to the chest, arm and hand) is pinched or narrowed during the 6th week of fetal life when these areas are developing. The lack of blood supply may cause these regions to fail to develop fully. Now that I have bored you to tears, I will continue with out journey. I will add that notable athletes with Poland Syndrome include Bryce Molder, a PGA Golfer and an olympic boxer, Jerome Thomas.

Rather quickly after birth Wyatt was weaned to room air and maintained his body temperature. Through all of this, he received physical therapy, occupational therapy and speech therapy all because of his low muscle tone. The speech therapist did a swallow study at about 2 weeks, during which it was found that he was aspirating. She said that three out of four swallows were good, but the fourth he was aspirating on. Because of this he would need a surgery to put in a feeding device called a G-Tube. We were transferred from Centennial to Vanderbilt because they were only equipped to help with general NICU issues. So, at only a few weeks old Wyatt underwent surgery to put in a G-tube for feeding. Even though were scared, we knew that in order to bring him home, the G-Tube had to be put in.

Wyatt was schedled for surgery on Wednesday.  We went down for surgery, loved and kissed and he was taken back.  We were told that surgery would last about an hour and that they would come let us know how things went.  After only about 20 minutes, we were called into a consult room to speak with the doctor.  Once the doctor came in, he told us that anestheiology had given him medication to put him to sleep and he had an adverse reaction.  Apparently, his blood pressure dropped, his heart rate went up and he went blue.  The doctor said that the anestologist had to "flip" his chest to get everything back to normal.  Needless to say, this surgery was aborted.  The doctor told us that a nurse would come let us know whether he was moved back to his room or to the recovery room.  We waited for over two hours.  I was a wreck.  The doctor had just told us that Wyatt had just had an issue with his heart, and then I sit for two hours and was told nothing.  Finally, I couldn't take it any more.  I went to the receptionist in the waiting room.  She called back and apparently he had been taken right back to is room.  Furious, we went to the room.  The doctors had obviously all been there and gone and we were no where to be found.  You have never seen so many people appologize in your life!

Surgery was then set for the following Friday.  Since the doctors weren't sure exactly what happened to cause his reaction, they took every precaution possible.  They increased his fluids the night before just in case he had been dehydrated.  When we went to the OR prep room, we were introduced to 3 anesthesiologists.  They even called in one from the "big hospital."  They told us that they were going to put him off to sleep with the gas, instead of the meds in his IV.  Our surgeon, Dr. Lovvorn came out about 45 minutes later to tell us that everything went perfectly.

After surgery, Wyatt was transferred to what the hospital calls "Seven South". This area of the NICU is a step down unit where parents are taught how to care for their infants who might have special needs, such as Wyatt's G Tube. In Seven South, I was able to spend the night with him. This helped me to become comfortable with not only his feedings, but general infant care prior to coming home. It was really nice to have someone else there when those typical mommy things needed to be done at 3 in the morning.

In total, Wyatt spent 3 weeks in the NICU total between Centennial and Vanderbilt. We received the most amazing Christmas gift when we were able to bring home our angel on Christmas Eve. I have skipped lots of things such as our emotions in all of this because frankly, there isn't enough paper in the world to contain the roller coaster of emotions we went through.

I am going to try and post our phases in separate blogs due to everything we have gone through with Wyatt. I think it will be easier to follow that way.

Blogging about my boy

I started this blog a while back and didn't continue it. However, since the birth of Wyatt, the overwhelming love and support of not only our friends and family but perfect strangers has caused me to get back at it. I hope to be able to update frequently with how our angel is doing. Also, I will be posting all of the old things about him that I posted previously on Facebook so that everyone can be up to date on where we have come from.

Photography Classes

I have been attending photography classes for two weeks now. Photography has been a love for me for years now. Growing up, my father had a dark room in our basement. It wasn't until my early twenties that I started taking pictures for the art of it. I know very little by way of technique, thus these classes. I have attached some of my photos from my first class. I am still a "work in progress" but these turned out to be my best. Enjoy!

Fall is in the air

I have read many blogs lately about the feeling of Fall in the air. Personally, the Fall of the year is my favorite time of the year, period.


I was born and raised in Eastern Kentucky, one of the most beautiful (and most disgusting - but that's another blog) places on the face of the earth. Situated at the foothills of the Appalachian Mountains, Prestonsburg (my hometown) was made for Fall. Around this time of the year, God begins his painting in this part of the country. The trees begin to change from green to reds, golds and oranges. Around the middle to end of October, there is not more beautiful place than Eastern Kentucky.



It's much, much more than the colors that makes me love this season oh so much. I love the smell of the crisp air. Fall plays on all of your senses. The smells of the air, the tastes of fresh apple cider and pumpkin pie, the sounds of the leaves crunching under your feet, beautiful colors all around. It's almost sensory overload!



I espically love the Fall because of festival time in Eastern Kentucky. I grew up going (religiously) to the local fairs. Paintsville holds the Kentucky Apple Festival. The downtown Paintsville area is set up with booths as far as the eye can see. You can samlple fresh, right before your eyes, apple butter. This was generally the time of year in which my family would all meet at my great grandmothers house. We always had the best time. The very next weekend is the Jenny Wiley Festival, held in my hometown of Prestonsburg. Since it was right around the corner, I spent every waking minute in the festival area. It has since shrunk in size since my childhood, it is still a wonderful time to see old friends I have lost touch with.

This year, I will venture back home for the Jenny Wiley Festival. I hold no great hopes for the festival this year, as in the past I have been disappointed. However, I will be able to see friends that I haven't seen in years. That is always a treat. Hopefully this year it will be just cool enough to wear long sleeves. I have missed that fall tradition.

All is right with the world?

Today, I love life. Is that an odd observation to make? I mean, most days I like life and some days I am frustrated with it. But today, I love it. I make this statement only to ask "All IS right with the world?"

We stumble through life with both moments of bliss and moments of melancholy. Sometimes the moments of bliss are often missed in the moments of melancholy. As of late, my moments of bliss have been triggered by nothing in particular. Maybe my favorite song on the radio or the warm sun on my skin. Today's bliss was triggered by a few things. First, I had the most magnificent weekend with my husband. We went to the drive-in movies on Saturday night to see a few 80's movies. Then Sunday, we "played house". We went to Lowe's to purchase a new lawn mower, then to the grocery. We didn't do anything spectacular or out of the ordinary, just nice "us" time. Today's bliss is also thanks in part to the weather. It seems that when the weather is nice, so am I. This is my favorite time of the year. From about Sept. 1 to Nov. something-another, I am generally in my happiest. The Fall of the year makes me smile. From the smell of the air, the sound of the leaves crunching under feet, I love the Fall. There is something so magical about it. I think a lot of that love goes back to Eastern KY. There can't be anywhere prettier than Eastern KY in the Fall.

I ask the question again "All IS right with the world?" I ask for one reason, is the proverbial other shoe about to drop? I mean, can we have the happiness without the tragedy? Can we? I have heard that you can't have the good times without the bad to remind you of the good. So I ask, is my "bad time" a'comin'? It scares me. I hate pondering if and when this "bad thing" is going to occur. Is that bad thing a lost parking place or worse? Is that bad thing as simple as a red light or worse? I dare not to recognize the possibilities.

So, for my fleeting brief moment of bliss, I will enjoy. I will enjoy the sun shining through the window, even if it is not from my office. I will smile it and thank God for it, for tomorrow it might vanish. I thank Him for the weekend I have shared with my true other half. I dream of the endless possibilities of future bliss.