To Children's We Go

So today has been very eventful! I took Karter in about 4:30 this morning to the ER because she was congested and was breathing somewhat rapidly every now and then. They did a deep nose suction on her and were going to just monitor her stats for a little bit then let us go back home...
About 10 minutes into the monitoring her stats began a significant decrease. Karter's oxygen level is typically in the 80's due to her heart conditions; however, after the nasal suction her stats dropped down into the 40's!!! Mind you a typical child has 100% oxygen! From there a whirlwind of events were started, doctors were called in, nurses began rushing around, and the chaos began! Amidst all the chaos Children's deemed it best if they came down and took our sweet Karter to Dallas for treatment. Due to her oxygen being so low they had to intibate her (meaning they put a breathing tube down her throat). Her intibate caused several problems and eventually had to be re-done after a near crash cart experience. I believe I experienced several out of body experiences at this time for I do not know who that calm mother standing in the corner with the two strong-willed baby protectors (GiGi & MiMi) was during this time. Once they had her stable enough (three hours later) we began the process of transportation. We first would be traveling by ambulance to Tyler Pounds, then by jet to Love Field, then back to ambulance to Children's Hospital.

We made it to Tyler Pounds in no time, they had be loaded and breifed on the process and as I was waiting for Karter to board I get told to get off the jet that we are going back to the hospital that they did not think she could make the flight....I was terrified!!! Not make the flight??? Does that mean that she is dying or what??? After what seemed like forever the nurse explained to me that she was giving them lots of trouble with her blood pressure this time which was effecting her oxygen. However, they finally had it under control and we were loaded up quickly to head to Dallas! FINALLY!!! Once in air she did well only having a few minor problems. Once we landed they took her immediatly to the Cardiac ICU where we will stay for the next few days. Upon assesment they decided to run a few more tests to decided what was causing this oxygen drop. It can be several things but the two main ideas are:
1. It could be a virus that is causing too much stress on her heart.
or
2. It could be that it is just time to fix this poor things heart, that she is just not able to stand it anymore.
Unfortunatly only time can tell....we will not have her virus screens back to Monday or Tuesday. They will be waiting on those before making any more calls. So as of tonight she is stable and doing great, she is still intibated and they also have paralyzed her and have given her a significant amount of pain medicine which should keep her sleeping. Her blood pressure is still giving them some slight trouble but they feel that they will be able to handle that.

Today has been another roller coaster ride, one I never thought I would be on in this lifetime. Karter still shows signs of strength and courage which I believe is what has got me through today tear free! I can not even began to thank everyone for their help and prayers today! Without her doctors, nurses, family, friends, and power of prayer there is no telling where we would be tonight!! Jeremy and I love all of you and miss our Addison Bug! Please continue to lift Karter Bear up in your thoughts and prayers!

Love,

The McHams!

Explanation of Karter's heart defects! :)

Here is a great explanation on Karter's AV Canal Defect

What is it?

Many terms are used to describe this complex defect. They include atrioventricular (AV) canal, complete AV canal, complete common AV canal and endocardial cushion defect.
Atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers. Also, the tricuspid and mitral valves that normally separate the heart’s upper and lower chambers aren’t formed as individual valves. Instead, a single large valve forms that crosses the defect in the wall between the two sides of the heart.

What causes it?

In most children, the cause isn’t known. It’s a very common type of heart defect in children with a chromosome problem, Trisomy 21 (Down syndrome). Some children can have other heart defects along with AV canal.

How does it affect the heart?

Normally, the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to the lungs. In a child with AV canal defect, blood can travel across the holes from the left heart chambers to the right heart chambers and out into the lung arteries. The extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lungs can become congested.

How does the AV canal defect affect my child?

A child with AV canal defect may breathe faster and harder than normal. Infants may have trouble feeding and growing at a normal rate. Symptoms may not occur until several weeks after birth. High pressure may occur in the blood vessels in the lungs because more blood than normal is being pumped there. Over time this causes permanent damage to the lung blood vessels.
In some infants, the common valve between the upper and lower chambers doesn’t close properly. This lets blood leak backward from the heart’s lower chambers to the upper ones. This leak, called regurgitation or insufficiency, can make the heart work harder, too.

What can be done about the defect?

An AV canal can be fixed. Open-heart surgery is needed to repair the defect. Unlike some other types of septal defects, the AV canal defect can’t close on its own. Medicines may be used temporarily to help with symptoms, but they don’t cure the defect or prevent permanent damage to the lung arteries.

In an infant with severe symptoms or high blood pressure in the lungs, surgery must usually be done in infancy. During the operation, the surgeon closes the large hole with one or two patches. Later the patch will become a permanent part of the heart as the heart’s lining grows over it. The surgeon also divides the single valve between the heart’s upper and lower chambers and makes two separate valves. These will be made as close to normal valves as possible.
If an infant is very ill, or has a defect that may be too complex to repair in infancy, a temporary operation to relieve symptoms and high pressure in the lungs may be needed. This procedure (pulmonary artery banding) narrows the pulmonary artery to reduce the blood flow to the lungs. When the child is older, an operation is done to remove the band and fix the AV canal defect with open-heart surgery.

Here is great explanation of her Tetralogy of Fallot (her second heart defect):

What is it?

Tetralogy of Fallot refers to a combination of abnormalities with four key features: 1) A ventricular septal defect (a hole between the ventricles) and 2) obstruction of blood flow from the right ventricle to the lungs (pulmonary stenosis) are the most important. Sometimes the pulmonary valve isn’t just narrowed but is completely obstructed (pulmonary atresia). Also, 3) the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect and 4) the right ventricle develops hypertrophy (thickened muscle).
Because of the pulmonary stenosis, blood can’t get to the lungs easily, so the blood doesn’t get as much oxygen as it should. Because the aorta overrides the ventricular septal defect, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. People with unrepaired tetralogy of Fallot are often blue (cyanotic) because of the oxygen-poor blood that’s pumped to the body.

What causes it?

In most cases, the cause isn’t known although in some patients, genetic factors play a role. It’s a common type of heart defect. It may be seen more commonly in patients with Down syndrome (in association with AV canal defects) or DiGeorge syndrome. Some patients can have other heart defects along with tetralogy of Fallot.

How does it affect the heart?

Normally the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to the lungs. In a patient with tetralogy of Fallot, blood can travel across the hole (VSD) from the right pumping chamber (right ventricle) to the left pumping chamber (left ventricle) and out into the body artery (aorta). Obstruction in the pulmonary valve leading from the right ventricle to the lung artery prevents the normal amount of blood from being pumped to the lungs. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia).

All of this information was provided by: www.americanheart.org

A story to share...

A friend of Jeremy's Aunt Carol sent us this story that I found very moving.....

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 　
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley　 1987

This story defiantly made me realize a lot of things...one being that it is OK to be sad and even mad that Karter has had such a rough start to her life! There are a lot of times when I see pregnant women walking around with a cigarette in their hand just to turn around and have a healthy baby that I find myself wondering why these things happened to Karter when I did everything by the book. When I find myself thinking this way I just have to remember that we were entrusted to have this special gift and although it was not planned it was always meant to be this way by our creator Jesus Christ.

Love,

Tara
　

Quick Updates!

Karter is doing sooo great! She is now 7lbs 2oz! We have had weekly weight checks and oxygen checks and so far she has been able to keep her oxygen level steady and she has also been able to gain weight every time we have been in the office! We went and saw her Cardiologist this past week and received wonderful news! She is doing better than they expected by being home! We did learn that they are planning on doing surgery around the end of July or in August. The reason for this is that they feel that her little valves will be firm enough to operate on and get a great repair. We did ask if they felt like they would wait any longer and they told us no that by the end of July or in August that she would be in perfect shape to undergo surgery. We also asked if they would be able to microscopically operate or if it would be open heart and the doctor said that they would defiantly be doing an open heart surgery. I feel that Miss Karter Bear is in the best hands possible for this surgery, she will have one of the top 5 pediatric cardiologists in the country performing her operation. In the meantime she is holding up wonderfully!

Her latest appointment this week was an eye check. Although they can not tell us if she can see 100% they were able to confirm that she was cataract free! This is great news!!! She does have a astigmatism that they will be monitoring but a lot of people have astigmatisms and do not even need glasses. It was so wonderful to hear great news from a doctor for once!

Things that they will re-evaluate this coming month are her thyroid and liver count. They are still getting abnormal readings but have determined that they can not find anything wrong. These abnormal readings could be what they call reading from sluggish cells trying to become normal. Otherwise her cells are not fully developed to their best potential and may be giving off an inaccurate reading. This is very common in newborns especially in Down Syndrome babies.

This past week has been a very long week and I can honestly say I am very glad it is over!!! Karter received her first set of shots and upon doing this Addison came down with some weird fever virus making it a long week with sick kiddos for me. Addison also developed another ear infection! (Making a total of nine for this year alone!) However all seems to be well with the girls tonight! Now if we could just get Daddy well! He is now suffering from an abscess in his mouth! It has been very hard with him feeling so bad!

So for tonight I will leave you with those current updates! I promise to be more vigilant in keeping this updated so I do not have to overload everyone with so many different things! :)

Thank you all for your continued support and prayers!

Love you,

The McHams

So the teaching begins...

So tonight as I was sitting here holding Miss Karter Bear I was overwhelmed with emotions. Over the last few weeks my faith has certainly been tested and as I sat here tonight I just kept asking myself and the Lord why did this happen? Why has my sweet girl started out her precious life with so many obstacles to overcome? Did I do something to cause all of this? And that is when she woke up looked directly at me and squeezed my finger with her tiny hand....at that moment I felt nothing but peace. Her little eyes seem to tell a story of her own, instead of feeling sorry for her I should be thankful that she is here and that the Lord has given her to us to share with the world. There are so many other things that could have been wrong and there are a lot of other families out there that are dealing with more pain than I could ever imagine. Karter is going to be alright, she is going to live a life that is going to be amazing. I can not believe that at such a young age that she is already teaching me. As a parent you feel as if you should be teaching your children, that you are the teacher and that they are a learner. Both of my girls have shown me that this concept is definitely not true. Addison & Karter teach me new things everyday. In fact I think that they have taught Jeremy and I more than we have even taught them. Addison is a true example of unconditional, unselfish love. She has taken Karter into our home as if she has always been apart of our family. She has not once been jealous of her sister and in some way I know that she already knows that Karter is a very special baby. She is just remarkable. So with all of this all I can say is that the Lord works in mysterious ways and tonight he touched my heart through our special angel. There will be no more tears of sorrow for me but instead tears of joy!

God Bless!

Tara McHam

Everyday is a new day!

Wow! I can not believe that Karter is already a month old! To start off I would like to say that she is doing WONDERFUL!!! Addison is still obsessed with her baby sister and continues to kiss her about a trillion times a day! It is truly remarkable to see how much she already loves her little sister.

So since our last update Karter has had a few doctors appointments. Her ENT appointment to test her ears did not go as we would have hoped. They did both tests on her little ears and sadly came back with poor results. On a baby that has good hearing they can hear from 75 to 25 decimals with 75 being the highest. Karter could barley hear on a 75 decimal in both ears. In Tyler they can only test for high frequency hearing so they have decided to send us back to Children's to retest her high frequency hearing and the low frequency hearing. We will go in July to test both of her ears again and from there we will be able to determine our next step and properly fit her for any hearing devices she may need. Since we are catching her hearing loss so soon we will be able to work with a speech therapist and hopefully prevent any speech impairments.

On another note at our last weight check Karter weighed 6lbs 1oz!!! Due to this she does not have to go back for another one for two weeks!!! Her oxygen and heart rate were also great. So our next major appointment will be in Dallas with her pediatric cardiac surgeon on May 25th for a check up. We will then get her first set of shots on the 28th, she will only be 6 weeks old at this time but they are doing them early in order to get in as many sets of shots as they can before her surgery.

Over these last few weeks I can not even descibe how much our hearts have been touched by the generosity of people. We have meet so many new people that have heard about Karter's journey and have just called or written to say hi, and even received a few blankets and trinkets from others. We have even learned how much people around us truly care. It is amazing to me how many lives have been touched by our little angel. So as I leave out tonight I would just like to say that the power of prayer is amzaing and we hope that everyone will continue lifting our precious baby girl up to the Lord.

God is great!

The McHams

The roller coaster ride continues....

Mine and Addison's first attempt at taking Karter's picture! :)

So our first real week home has been incredible. Karter is such an awesome baby! She is though just that a baby....so yes we are exhausted. We have to keep a rigorous schedule of feeding her every three hours due to her weight, which means that we have our alarm clocks set up to remind us every three hours that we need to feed her. She already would probably sleep a good five hours at night if she did not have to be woken up to eat. This week has been full of doctors appointments! On Monday we went and did a weight check and she weighed 5lbs 11oz which was up from her last weight check. So hopefully we will keep that trend of gaining weight! We also meet with the special needs nurse on Monday and she was so much help to Jeremy and I! She was full of information for the both of us that will hopefully help us along this journey with Karter.

On Wednesday we went to the audiologist/ Ear Nose and Throat doctor to have her hearing tested since they did not test it at either hospital. Her test came back negative/inconclusive. The doctor was not able to get a response out of either ear. This could mean several different things. First of children with Trisomy 21 (downs) are known to have small ear canals and due to that they can hold fluid in their ears several weeks after birth. This fluid could have caused the unresponsiveness in her ears. We go back this coming week to be retested and if she can not get a responsive through her general test then we will be tested a second way which is a little more complicated but can yield better results for us to get a more accurate picture of what she can and can not hear. We are still praying that the unresponsiveness was due to the fluid and that she does have full hearing capacity.

On Friday we went to the endocrinologist which is a genetic doctor to asses everything about Karter. When we got there they took all sorts of measurements and asked me about a hundred questions on my pregnancy and our family history's. She then went over everything that I needed to know about Downs and how a child can obtain the extra 21st chromosome that causes down syndrome. During this time I did learn that about 95% of children with downs have a type of downs that is very random meaning that neither parent contains any other factor that may attribute to Down Syndrome. The other 5% of children that get Trisomy 21 have a type that is still random but one of their parents may contain a small glitch in their chromosomes that can attribute to their children having down syndrome. She was still waiting on the chromosome report from Children's to analyze so that she could tell us what kind of down syndrome Karter has. Once these tests are in and analyzed we will be sure to post a more detailed report.

We also found out on Friday that Karter's new born state report came back with some more abnormalities. The state requires that all children are tested for certain things right after birth. One of these things is Cystic Fibrosis. Karter had an elevated Trypsinogen level which is relevant in children with Cystic Fibrosis. Therefore we had to be retested for this elevation on Friday at the hospital. Although it was elevated there is still hope that it could be nothing, for a lot of infants have an elevated level on their first screening which is why we were required to do a second screening to check to see if the elevation was still relevant. PLEASE pray that her next test comes back with good news and shows no elevation. The results for this test can take almost ten days to come back so as soon as we know we will re-post more information!

To say the least this week has been an up and down week. I am generally happy that we are home but all of these doctors appointments have took a toll on my emotions. I just dread it when the doctor comes in and says the word "well" because most of the time that means that they are about to lay some bad news on you. I am so tired of bad news!!! I am trying to concentrate on all of the positives...such as her being home and maintaining an excellent oxygen level, gaining weight, sleeping well, and other great strides that she has made to postponing her heart surgery! The longer we can wait the better chance that they will be able to repair everything at once with no complications. We go back to the doctor Monday for another check-up on her weight and oxygen level so I just pray for good news then!

We ask that you continue to pray now for not only her heart but also for her hearing and Cystic Fibrosis test. I know that the good Lord will see us through all of this and with your prayers I just know we can create miracles. Karter is going to touch and teach everyone she meets! She was given to us to change this world one person at a time; she already has touched so many hearts and led many people back to the Lord through prayer. She generally is our little angel!

Love,

The McHams