All is still going great in the Hardy household. As of Monday 8/4 Colt was up to 8 pounds and 14.5 ounces, talk about growing. Our first rounds of immunizations shots will be next weeks, we will be glad those started. One step closer for his cousins to finally see him for the first time.
We were asked to appear on News Channel 27 last Thursday August 7th with Colt's surgeon and the UK pediatric cardiologist chief. So Colt and I got to be on TV, we were told Bradley would get to be on too, but they did not setup enough chairs, I was a little upset that Bradley got all dressed up and looked so handsome and I did not get to show him off with Colt, after seeing the video wish I would have held Colt up so everyone could see his face and some of the funny expressions he makes and you can see just how much he looks like his Dad, so very handsome.
I made sure to record it to DVD so we can show Colt when he is older and he will know just how special he is. How exciting each day has been. :o)
Here is the link below
http://www.wkytarchives.com/ResultsServlet?station=WKYT&search_parameters=Melissa+Hardy&searchtype=archive
We went to the doctor High Risk OB/GYN yesterday and to Dr. Cottrill our pediatric cardiologist today
OB update
1 cm dilated and 50 % effaced and Colt is measuring at 7 pounds and 12 ounces. Dr. Hansen wanted to induce me Wednesday or Thursday of this week and I starting freaking out, I said I am not ready yet. How crazy is that I really wanted to go in labor on my own but it may not happen so, we compromised and agreed that if I do not go into labor on my own by next Monday 6/16, then I will go into the hospital Tuesday morning 6/17 to be induced which is my dad’s birthday – he is so thrilled and does not mind sharing his birthday with his grandson a bit. So unless Colt decides to come on his own, we are going to meet our son next Tuesday.
Cardiologist update
We got good news today, if all goes well after he is born we will get to feed him breast milk through a bottle after they take him to the NICU and he is given the prostaglandin drug and he is stable. Our pediatric cardiologist said the baby girl that was born 2 weeks ago with the same heart defect is doing much better feeding and after surgery since feeding through a bottle and not an IV or feeding tube after she was born, she said some reason babies will forget how to feed and swallow if they are not taught right after birth. When Dr. Cottrill had told us about this little girl at our last visit I had prayed that she would be strong and come through surgery successfully and she did. The little girl is doing remarkably well post-op, that has really raised my hope and lifted my faith.
God is an amazing god.
"He heals the brokenhearted and binds up their wounds."Psalm 147:3
I will update if there is anymore news before Tuesday :o)
Our boy is growing; they estimated 3 pounds and 1 ounce. WOW. His heart is still the same; so far it is not any worse which is so wonderful news.
I still pray for a miracle, but I am so thankful for the blessings god has already given us.
I gained a little more than normal this past month and my sugar was above the normal on the glucose screening test so I have to fast again Monday and go back for the 3 hour test. I thought I was starving at yesterday appointment from fasting, Monday will be worse, I am sure I will get a few extra kicks from Colt wanting some food….lol
We follow up with the Pediatric Cardiologist Tuesday April 15th, hopefully we will find out when we get to meet the surgeon and schedule time to take a tour of the birthing center and NIC unit.
Again thanks for the cards, emails, and adding us to prayer lists. Bradley, Colt and I are so very lucky to have supportive friends and family.
God Bless!
You guide me with your counsel, leading me to a glorious destiny.Psalm 73:24, NLT
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Good news no gestational diabetes, still need to watch what I eat though :o)
Resource: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm
What is Hypoplastic Left Heart Syndrome?
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.
In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.
The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.
This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.
Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.
The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.
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Hypoplastic Left Heart Syndrome signs and symptoms
As mentioned above, infants with Hypoplastic Left Heart Syndrome can develop life-threatening shock when the ducutus arteriosus begins to close. In most cases, however, the ductus arteriosus is widely open at the time of birth, supplying the blood flow to the body and babies may not be diagnosed right away. As the ductus arteriosus closes, which it typically will in most infants in the first hours or days of life, the perfusion to the body is seriously diminished and shock rapidly ensues.
Newborns with Hypoplastic Left Heart Syndrome will typically have lower-than-normal oxygen saturations. This is because all of the blood from the lungs (the oxygenated "red" blood) mixes together in the single right ventricle before being pumped out of the lungs and body. Cyanosis, therefore, may be the first clue to the presence of a serious underlying cardiac condition. Respiratory distress (difficult or fast breathing) is often present because the lungs will tend to receive an excessively large amount of blood flow. There is often no or just a faint murmur present in newborns with Hypoplastic Left Heart Syndrome.
The pulses may be very weak in all extremities on examination depending on flow through the ducturs arteriosus. Lethargy, poor feeding, and worsening respiratory distress may be seen as the ducturs arteriosus closes. Ultimately, severe shock resulting in seizures, renal failure, liver failure, and worsening cardiac function may develop. Whether these problems are reversible depends on both the severity and the duration of shock.
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How Hypoplastic Left Heart Syndrome is diagnosed
This heart defect is one of the most readily diagnosed on fetal echocardiograms and is one of the most common cardiac defects picked up on screening obstetrical ultrasounds. Such early diagnosis of the anomaly allows for prompt intervention for stabilization at the time of birth so that severe shock may be avoided.
Planning to deliver such an infant at a hospital capable of aggressive newborn resuscitation is important in improving the chances for a good outcome.
Echocardiography is the principal method of diagnosing Hypoplastic Left Heart Syndrome. It can give detailed information of the anatomy of the various cardiac structures affected in Hypoplastic Left Heart Syndrome, as well as important information about the function of the right ventricle and its valves the size of the atrial septal defect (important for blood mixing) and the size of the patent ductus arteriosus.
Cardiac catheterization is almost never needed for newborns with this heart defect as part of the initial evaluation due to the high risks in an often unstable newborn. Catheterization, though, does play an important role in the evaluation of the cardiopulmonary function and anatomy in older children with Hypoplastic Left Heart Syndrome while planning for later stages in the treatment.
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Hypoplastic Left Syndrome treatment
The management of the newborn with Hypoplastic Left Heart Syndrome can be divided into the initial stabilization period and the operative / post-operative period.
Even while diagnostic tests may be going on, the rapid stabilization of infants with Hypoplastic Left Heart Syndrome must begin as soon as the diagnosis is suspected.
Catheters are placed, usually in the umbilical blood vessels, which allow medications to be given and blood to be obtained for testing. An infusion of prostaglandin, a medication that prevents the patent ductus arteriosus from closing, is begun, thus maintaining the pathway for blood to reach the body from the right ventricle.
Even though the infant may have low oxygen saturations, supplemental oxygen is avoided since it tends to promote more blood flow to the lungs which may steal blood flow from the body and place excessive demands on the already stressed single right ventricle.
Manipulations of medications and respiratory treatments (including possible mechanical ventilation) are performed to optimally balance the flow of blood to the body and the flow of blood to the lungs.
Close monitoring is essential to detect any organ dysfunction and maintain cardiopulmonary stability because infants with this anomaly may be very unpredictable and undergo quite sudden changes.
There are essentially three treatment options that have been proposed for children with Hypoplastic Left Heart Syndrome.
In the past, due to poor outcomes with available treatments at that time, no treatment was often recommended. Today it is rare that a family may choose not to treat a child with Hypoplastic Left Heart Syndrome, though in cases when the infant is unable to be satisfactorily stabilized no treatment may be advised.
Cardiac transplantation in the newborn period is performed as primary treatment for Hypoplastic Left Heart Syndrome at some centers in this country. While transplantation has the advantage of replacing the very abnormal heart of a child with Hypoplastic Left Heart Syndrome with one of normal structure, this treatment is limited by the scarcity of newborn organs available for transplantation and the life-long need for anti-rejection therapy. Additionally, although outcomes for transplantation continue to improve, and the incidence of rejection is lowest in patients transplanted as newborns, the average life span of the transplanted heart is limited (currently less than 15 years).
The most commonly pursued treatment for Hypoplastic Left Heart Syndrome is "staged reconstruction" in which a series of operations, usually three, are performed to reconfigure the child's cardiovascular system to be as efficient as possible despite the lack of an adequate left ventricle. These surgeries do not correct the lesion, and are instead considered "palliative".
The first operation in the staged approach is known as the Norwood operation and is typically performed in the first week of life. With the Norwood operation, the right ventricle become the systemic or main ventricle pumping to the body. A "new" or "neo" aorta is made from part of the pulmonary artery and the original, tiny aorta, which is reconstructed / enlarged to provide blood flow to the body. Finally, to provide blood flow to the lungs, a small tube graft is placed either from an artery to the lung vessels (called a modified Blalock-Taussig shunt) or from the right ventricle to the lung vessels (called a Sano modification). Because of the extensive reconstruction of the aorta that must be done, this operation is one of the most challenging heart surgeries in pediatrics.
The subsequent operations in the staged reconstruction plan are the bi-directional Glenn procedure, typically done at 3 to 6 months of age, and the Fontan operation, typically done in children older than 2 or 3 years. These operations are described in more detail in the Heart Encyclopedia chapter on "Single Ventricle Cardiac Anomalies."
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Results with staged reconstruction for children with Hypoplastic Left Heart Syndrome / Norwood operation
The Norwood operation is the most complex and highest risk procedure in the sequence of staged reconstruction for Hypoplastic Left Heart Syndrome. Current management at major pediatric heart centers has resulted in survival rates of 75 percent or better.
The recovery period in the hospital following the Norwood operation is often unpredictable and complicated, averaging about 3 to 4 weeks. A small percentage of patients who leave the hospital may continue to experience significant problems in the first months of life.
Occasionally, the right ventricle does not function well following the Norwood operation and in some case, cardiac transplantation may need to be considered.
If a child with Hypoplastic Left Heart Syndrome reaches the time for the second stage (about 4 to 6 months of age) without major complications, the survival through the Glenn and Fontan operations are much better, exceeding 90 percent with current methods.
Almost all children with Hypoplastic Left Heart Syndrome will continue to need some cardiac medications to maximize the efficient function of their heart, and all will require regular periodic follow-up visits with their cardiologist to evaluate their cardiac function and detect late complications such as arrhythmias.
Tuesday 2/5/08
The day came to visit the pediatric cardiologist and I was still hopeful that today we would get better news. Again there was the scared and helpless feeling when we entered the specialists office, Bradley was right there by my side as he had been from the beginning of all this, he went ahead and went into the ultrasound room as I had to make one last stop to the potty since a pregnant woman often times becomes a member of the FBI aka(Federal Bathroom Inspector) and has to pee at least twice at every place she goes. Bradley was already seated in the room as I made my way in and I noticed this little old lady in a wheel chair, I was thinking to myself, did they put us in the wrong room, nope this was our pediatric cardiologist, Dr. Cottrill who is probably in her early 70’s. She was warm and sincere as she watched the ultrasound and studied his heart and how it was functioning, I could see the look of concern in her eyes. Bradley wiped the tears from my eyes as they finished the ultrasound and fetal echocardiogram. I sat up and Dr. Cottrill said that Colt has a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). I had already done some research and I remembered reading about this defect and was so relieved when Dr. Campbell said Aortic Stenosis and not Hypoplastic Left Heart Syndrome since the information I read on (HLHS) was even more serious then the Aortic Stenosis. As Dr. Cottrill explained the defect and explained that there are 3 reconstructive open heart surgeries that are done to redirect the blood flow using the Right Ventricle of the heart as the main supply to the body. She continued to explain that the 1st surgery will be done right after the baby is born, then the 2nd around 6 months of age, and the 3rd ranging from 1 ½ - 3 years old. I was trying to let it all sink in that instead of our little Colt having 1 surgery on his heart is going to have to have 3. I asked where will he being having surgery thinking it would be in another state.
Dr. Cottrill said that UK just recently got a surgeon who transferred from California who specializes in this surgery…..Amen some good news, if all goes well we won’t have to be away from home to have the baby. She said when I get further along we will meet with the surgeon and he will explain everything more in detail and that she will see us again in a month to monitor the babies progress. After we got out of the pediatric cardiologist office Bradley called his mom and I called my mom and we both explained what was going on and the news of the UK surgeon who recently transferred to the hospital who specializes in this surgery.
*God works in mysterious ways.
Wednesday 1/23/08
They got us an appointment to the high-risk doctor the next morning. Bradley and I went hoping for some positive news and that is was all a mistake. We got called into the Ultrasound exam room and the Ultrasound tech went through the normal ultrasound taking pictures of all the organs, etc and labeling them and then they looked at the heart again, you could see on the ultrasound and using the Doppler that part the left part of his heart was only getting a small amount of blood and only sporadically. Dr. Campbell came and was looking at the ultrasound of the heart and the Doppler and explaining that all chambers of the heart should show the same amount of activity and blood flow and in our case the left ventricle of the heart he diagnosed him with a condition called Aortic Stenosis and explained that if the baby can make it to full term that he will need to have surgery on his heart as soon as he is born and that we might have to have the baby in Cincinnati or Michigan where the surgeons who specialize in this type of surgery on newborns is located. He assured us this was not anything Bradley or I done to Dr. Campbell suggested that we go ahead and have an amniocentesis to determine if there were any other abnormalities. He explained the risk with the amnio and we agreed that we wanted to be prepared if there was something else wrong. I figured Bradley and I would be sent to the hospital for the test, but to my surprise just minutes after we decided on the test they laid me back on the exam bed and cleaned my stomach with iodine and continued to numb my stomach where they were going to insert the 7.5 cm needle. Bradley stood beside me and held one of my hands and gently brush my hair away from my face with the other.
I did not watch the amnio needle go into my stomach, instead I felt the stinging pinch watched on the ultrasound monitor and saw the needle piercing through my abdomen, when the procedure was almost done I saw our baby boy’s little hand like waving on the monitor. In that moment nothing else matter except him and as strong as I wanted to be I couldn’t stop the tears from falling. We were told the that the results would be back within a few weeks. They instructed me to go home to rest and take it easy the remainder of the day since I could experience some cramping from the procedure. After we left the doctor’s office I called one Shannon- one of my peers on my team to ask if she could cover for me. When she answered I could barely get out the words to say anything except ask that she cover for me the rest of the day. She could hear the hurt in my voice as she said Missy, “You don’t have to say anything, I will cover you the rest of the day no problem, when you want to talk I am here.” In her not only do have a great co-worker, but a wonderful and dear friend. Already I was blessed with the supportive chain desperately needing.
We got home from the doctors office and I knew I would have to start making phone calls and trying to re-explain all the information the doctor provided about our little boys condition. I told Bradley he could go onto work, because I knew he needed to stay busy and focused - that is how he is built.
First call was to my mom and then Bradley’s mom and I tried to explain the best I could of what they found was wrong with the baby’s heart and that he was going to need surgery as soon as he is born, in additional to we may have to travel to another state to deliver the baby depending on where the surgeon is who can perform the surgery. Both my mom and his mom stayed positive while they were on the phone with me which made it a little easier and they offered prayer and support. Next call was to my sister(Stacy) who is a proud mother of 2 children a girl Allie and a boy Scott, she cried with me and said we can’t lose our faith God is going to help you and Bradley thru this and watch over your special baby boy. She asked if I needed anything and I said I would like the company and to see the kids, they always cheer me up. She came out and visited with the kids, my mom and little sis (Lindsey) came out, and then Bradley’s mom and dad stopped by, it felt nice to have the company, we all watched the ultrasound video and they saw him moving around and saw the imaging of his heart and where it was not working the way is it supposed to.
When Bradley got home that night, I insisted we needed to give our little boy at least a first name and he picked out Colt, I said Colt it is. Our special little Colt.
I knew going to work was going the next day was going be hard, since not only is being pregnant an emotional roll-coaster but having complications just doubles it.
Everyone at worked asked out everything went and I did my best to hold back the tears, I explained what was going on that that we would hopefully know more when we see the pediatric Cardiologist.
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