Tuesday, March 1, 2011

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.

2 comments:

  1. You are such a strong Momma, such an inspiration. Keep your chin up.
    Love reading this blog and getting to know little Wyatt a little more.
    Bless you, sister.

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  2. Oh my goodness, Brooke and Mike. I had no idea. Please feel my hugs and love to you both.

    ReplyDelete