A small introduction of the many faces of Karter's Care team!

We finally got a straight answer today! Karter will not be going home till surgery. They will not schedule her surgery until she is half a kilo bigger which is about one pound. Therefore we will be staying here at the hospital getting this little booger nice and fat. They have fortified all of her feedings in order to get the maximum weight gain! She is weighed 9 lbs .3 oz yesterday and today she weighed 9lbs 1.8 oz so she had about a 1.5 oz gain! I am a bit relieved that we will not be going home until surgery and I do not even mind the wait up here as long as it is all to benefit her and her health. It is a little bitter sweet just because I would love to be home but at the same time home would not be the same with Karter Bear on the verge of having another attack. I would be a nervous wreck, so at the hospital we will gladly stay!

So tonight I thought we would entertain you with some of the medical staff we have meet while we are here. I will be giving each of them a unique name due to privacy issues.

The first person I would love to introduce you to is soon to be Dr. Awkward. Dr. Awkward introduced himself to us when we moved from the ICU unit to the eighth floor. Now you have to understand that he is a medical student. The first time he came into the room he was quick to blurt this out. He walked in with his unsure posture and immediately said, "I am just a med student". We quickly began to just refer to him as the med student for each time he comes in the room he gives us his prognosis and then reminds us again that he is "just a med student". Every time he comes in he looks as if he is trying to find something just anything to do to make him feel and look important. He listens to her heart, checks her vitals, and then asks us "Do you have any questions? I will give you the best answer I know but I will always go double check it to make sure I told you correctly because I am just a med student". I think he tells us he is just a med student probably a good five to ten times while he is in the room. He reminds me of Doggie Howser. He is so interesting to watch when the nurses come into the room, it is like he gets all shy and unsure of himself. I have never seen a man so intimidated by such sweet ladies! The poor thing looks as if the nurses might bite his head off at anytime! I think that Jeremy and I have both developed a little school girl crush on him due to his awkward personality. I even tried to come up with a list of questions to ask every time he came in the room just to make him feel important! When we were transferred back to the ICU I could not wait to get back to the eighth floor to be entertained by Dr. Awkward. Sadly to say though we have not seen him in rounds since we have been back. :( Hopefully he will return to our lives soon!

The next person I would like to include is Mr. Pompous. Mr. Pompous is a nurse in the ICU unit. This nurse was so full of himself I swear he was going to pop. While I know that a lot of RN's usually know more than the doctor I hate to say that this RN did not. Nurse Pompous liked nothing more than to do nothing. There were several times that he left Karter in a soaking wet diaper because he just forgot to check it. Nurse Pompous unfortunately made the mistake of talking badly about our eighth floor nurses who we adore. Due to this we had to file a report on him. Needless to say we will never have to deal with him or his arrogant self again! He was truly the first person we have meet in this hospital whom we did not care for taking care of Karter. I just pray that he starts to treat his other patients better and realizes that no matter what floor a RN works on that they are all important!!!

Dr. Shadow is the last person I would like to introduce tonight. He is a short little man, good looking though, that follows around the main cardiologist. He is a doctor but we are very unsure why he follows the cardiac doctors around. Dr. Shadow also has an almost shy personality. I do believe that we may intimidate him or maybe he is just scared by our looks in general. He tends to come in early in the morning before make-up and teeth brushing time! No wonder the guy looks a little scared, the more I think about it the more I realize what he is walking into every morning! Haha! Just Kidding!

Anyways Dr. Awkward, RN Pompous, and Dr. Shadow have provided us with a lot of entertainment. From the shyness of Dr. Awkward and Shadow to the arrogance of Pompous we have had our share of laughs. I know that you may not understand why they are so entertaining to us but I guess once you have been locked in a hospital for almost three weeks that you find something, anything to entertain you!

We are truly thankful to the staff here at Children's Hospital! They have made our stay incredible and for the most part everyone is super nice, friendly, and welcoming! Please continue to pray for Karter and please also include a small prayer for Pompous so that other families do not have to endure his mighty attitude!

Love,

The McHams'

A look back in time...

Today we were visited by Kathy and Sarah Irish. We had a wonderful visit with them and they even brought some bows, hats, and headbands for Karter's Bow of Faith! It was so good to talk to people out in the "real world"! Upon talking to them I discovered that I have never written about Karter's birth or the events leading up to her birth; so with this I believe it is now time to share her birthing story.

P.S. She is doing wonderful tonight. We were moved back to the eighth floor today but there is still no word on anything. We have no idea what they have planned for the next few days, hopefully we will get to see the doctor tomorrow morning and figure a few things out. She did let her stats start to drop this evening but they were able to adjust her oxygen and bring her back up to the 70's. You know how she is...She likes to test the nurses out and make sure that they are on their toes! :)

Karter's Birth Story

So the start of Karter's debut started at Jordan's ball game. We had gone to the zoo earlier that Saturday afternoon and walked the entire thing! I thought for sure that this would send me into quick labor....I was wrong! Later that evening we went to Jordan's game. While there I started to feel some really good contractions but they were still quite a bit apart. I also felt as if I was leaking some fluid. I had just been to the doctor on Thursday so I thought I had nothing to worry about! On our way home from the game the contractions became worse and I began to feel quite nauseated by them so we decided to:

A. Get home

B. Pick up the house a little

C. Clean the floors

D. Call the Parent Patrol

E. Put Addison to bed

F. Pack the bags

G. Go to the hospital

I thought for sure that if we would do all of these things then when we got to the hospital I would be good to go....WRONG! Our parents came over faster than lightening and we left to go to the hospital. There they checked by cervix and I was fully defaced but only at a 2!!! So they sent us on a walk for two hours around the hospital. Jeremy and I walked and walked and walked! I even did the stopped escalators! Terri joined us and took some pictures. We were on cloud nine and beyond excited to have her here!

After two hours had passed they put me on the contraction monitors and decided to check my cervix again...I was only at a three! Two hours of intense walking for this fat pregnant lady and only at a three. They called the doctor and were about to send me home when they noticed a small drop in her heart beat on the screen. It would only last a few seconds then go right back up. With this they (being the nurse and the doctor) decided to keep me for a little observation. It was about three o'clock in the morning and we were exhausted from our walk! So we tried to sleep. Jeremy was able to sleep but all I could do was watch the fetal monitor. About every 20-30 minutes it would happen again but it always happened with a contraction. I thought it was strange but just figured the baby was trying to show them that she was ready to enter the world. At 6 that morning they decided to do a sonogram to determine what was going on. The sonographer told us that it was just a typical sonogram and that she would be giving the baby points for everything that she checked. She could get a total of 8 points but only 4 points were necessary to pass. She only received 2 points...again we thought this was strange but just figured that she could be in a little distress. They also discovered in the sonogram that she was lacking fluids in the womb. We thought that the lack of fluids was the cause of her distress and continued on not worrying. Looking back on it now I think that they probably saw something in the Sono with her heart and just did not want to tell us till they could confirm it.

We were then released to go to the delivery room to start some pottosin and get this show on the road. They also gave me two bags on fluid through the birthing canal to replace the fluid in the womb. It had turned out that my water had broken and we had not even noticed it! The pottosin was put in at 10 that morning, at about 10:30 they gave me my epidural and by the time they were done with the epidural I was at a 5! She was getting close to being here! By noon I started to feel the need to push so they called the doctor in and began to get ready. I did not even notice that the neonatal team had entered the room till much later. Karter made her first appearance at 12:19 on April 11, 2010. She was beautiful but very tiny! I remember commenting to Jeremy about how tiny she was and I believe at that moment deep down I knew....I knew something was wrong.

The neonatal team who I thought were just the babies nurses began to check her right away. They came and told us that she had probably swallowed some fluid when she was coming out due to being born so fast, so they would need to take her to their unit to check her out a little more and give her a little oxygen. Jeremy was allowed to go and they would bring her back in a few minutes. When they all left Terri came back to the room. We were all so thrilled she was here! I made the few phone calls I needed to make while Jeremy appeared back in the room to show me some pictures of our newest addition. About ten minutes later a neonatal doctor came into the room and asked everyone to leave except for the parents....my heart DROPPED!

At this moment I knew, a mama always knows when something is wrong and I just knew it was bad! She then came to the bed, got level with me, grabbed my hand and proceed to tell me that she suspected that Karter had Down Syndrome. Now here is where you might think of me a little less because a trillion things ran through my head in that moment that I am not proud of for even thinking. My perfect family I had envisioned was gone...Addison was robbed of having a best friend that she could call late at night just to talk...Karter was not "normal"....I had failed as a mother to give her everything she needed...I was blank. Upon that sinking in the doctor then went on to tell us that she believed Karter had a heart defect that could be life threatening, at this moment I knew that the Downs did not matter. I NEEDED her to live. I NEEDED my baby to be okay. Her being Down Syndrome was not a problem it was a TRUE BLESSING! I could take the downs but the heart condition....I kept myself together until she left the room. I was numb. You know how your arm feels after falling asleep? Like a million little pins poking at it? Well this is how my whole body felt. I held it together for a few minutes until we had to tell our immediately family. It was at that moment I lost it. The tears flowed and flowed. Every time there after when the Doctor came in the room my heart stopped I just knew she was going to tell me that Karter Bear had not made it.

As the hours passed on we learned bits and pieces of information. We learned that while they thought she had downs that they would have to confirm it with a test that took a few weeks. We learned that her echo came back from Dallas confirming a heart defect. We learned that we would be going to Dallas to Children's that evening. We learned what true friends were. We learned about FAITH.

Karter's journey at birth was filled with fear and joy and it something that I will always remember... the good and the bad.

Love,

Tara McHam

Giving us the boot out of Cardiac ICU....

Looks like they are giving us the boot out of the Cardiac ICU unit tomorrow morning. They have apparently had enough of us on this floor! Haha! JK! They absolutly adore Miss Karter but they do feel as if she is ready to go back to the eighth floor. From there that could mean home in a few more days. HOME makes me so NERVOUS! I mean wow without any euipment or monitors I am going to be a nervous reck!!! I can guarentee one thing, our doctors office and the ER will know us by name! I can already tell you I will be taking her in for any sign of trouble! For when she has these tet spells she spells so quickly and drops to a really low oxygen in the matter of just seconds. I just hope that I can notice the signs of her spelling a little bit better than I did before we were in here in Dallas. I will say that I have learned an awful lot up here and feel as if I could already be an RN for AV Canal and Tetralogy of Fallot. I just feel sorry for the ER crew that will have to listen to me telling them what to do! They are just going to LOVE me! ;)

Anyways today was a great day obviously for Karter. She had NO spells and her oxygen levels have been decent all day. Addison and Jeremy made it down this morning and he got to spend some time with Karter while I spent some time with Addison. We then headed over to the Cato Family Reunion and spent the afternoon with my family. We took Addison out in the boat and she loved it! I think she is eventually going to be a waterbug! So all in all today has been almost perfect!

By the way I took a small walk around the CICU unit and "peeped" in the doors and noticed several little babies wearing their goodies! They were PRECIOUS!!! I am so glad that we were able to get the bows to them this week! They even had a few extra to keep them tided over for a little while. I wish I could have taken some pictures but the laws guarding their privacy are really strict and I understand so I minded my manners and just "peeped"! I did include my e-mail on the little cards so hopefully we will get a picture or two from some of them!

Please continue to pray for strength for our Karter Bear! I know that she is doing as well as she is because of all of the prayer lifting her up to our one and only God. What the power of prayer can do is just so incredible! Tonight I also ask that you continue to pray for all of Karter's friends up here. I just can not imagine some of the pain these parents are going through! I have heard some really good stories and made some lifelong connections which I am very greatful for being able to do. While I am up here I better make use of my time spreading our great faith and belief in Prayer!

What an AWESOME God we have!

Love,

The McHams'

In the Lord's time.....

"Well", I should have known that today was not going to be an easy day when the doctor came in saying well. It is that code word that I am a true believer that all doctors use to break news to you that you really probably do not want to hear. So we WERE on track to get surgery as soon as possible; however, they have now decided that the parts of Karter's hearts that they will be operating on are still too soft. They described it to us today by saying that the parts that they will be needing to put sutures in are still almost like tissue paper instead of being firm. If you can imagine having to stitch up tissue paper I would think that it would be pretty difficult. This means that they need her to age just a little bit more. She is big enough to withstand surgery now but she is not old enough to get a GOOD repair. THEREFORE, we have no clue what lays ahead of us for the next few days. They did come up with a new theory involving Karter's hemoglobin count. She does have a normal blood count but they feel that if they increase her blood count by putting in packed red blood cells (these cells help to carry and generate oxygen) then they should be able to keep more oxygen in her tiny little body. So today Karter received her first transfusion of blood. Thank goodness for blood donors! She was able to get this transfusion at about 3 this afternoon and so far it seems to be doing what they want.

They originally, this morning, had said that they would not be pulling out her nasal cannula (her oxygen supply), but then they came back in this afternoon and said that they will be lowering it until they are able to pull her off of it hopefully by tomorrow. I know she will be glad to have the cannula off of her face! Today has just been a roller coaster of information and new ideas from the cardiac doctors. I feel like every time they tell me something that no more than half an hour later they are coming back in to change what they told me. It can get very confusing but I do understand that they have Karter's best intentions in mind. I was very upset this morning when they told us the surgery was postponed indefinitely just because I think I finally had mentally prepared myself that she was having surgery soon. Sometimes it can be very frustrating when you have no idea what the next day will behold, especially when half of my family is still back in Tyler.

They would like for Karter to be AT LEAST be one month older before her surgery. This could mean several things for us. If they are not able to keep her as stable as they would like and avoid a lot of tet spells then we will be spending that month in the hospital. If they are able to make her stable then we could possibly be going home. Karter is still on a very high dose of Atenol (heart medication) in which the nurses are almost a little afraid to be administrating. If this medicine dose not show signs that it is working then it is very likely that we will not leave here anytime soon. This medication is suppose to make her heart rate stay between 90-120 beats per minute but it so far has not. Hopefully with the new blood cells we will see an improvement in this area. The doctor did ask for us to allow him a few days to "experiment" with a few things to see what they can do before making any more calls. So we are back to the waiting game. I do believe that this is all a sign from God showing me that all things will be done on his time. I am trying very hard to do this! It can be challenging and frustrating at times but that is what faith is all about. It is about believing that everything happens for a reason unbeknown to you but all apart of a greater plan.

Tomorrow Addison and Jeremy are coming to visit and I can not WAIT!!! I am so excited to see them! I miss them so much! My mom had to go home tonight so it is just Karter and I giving these nurses and doctors a run for their money tonight! :) I do believe though that my mom may have intimidated one of Karter's cardiac doctors today! It was really kind of entertaining to watch!

UPDATE ON KARTER'S BOW OF FAITH:

We donated about 35 bows today to the Bow of Faith organization and I can now proudly say that every little girl on the third floor is equipped with a bow! Thank you all so much for such a great job on making this a huge hit! The nurses were so thankful and said that a lot of the parents were very appreciative and we even brought some to tears. They LOVED them! Keep up the good work ladies!!!

Love,

The McHams'

Four spells in less than 24 hours.....

So we thought yesterday might have been the big day; however, plans changed due to other cases that were more prominent. The good news is though that some little girl received a new heart!!! Dr. Forbes had to do a emergency surgery on another little one that crashed, and then he had the honor of putting in a new heart for a little girl! How miraculous is that? Now I can not say that I was not disappointed that Karter did not get to have her surgery; although it is comforting knowing that we are waiting on a doctor that is ranked in the top five of the country for pediatric heart surgeons and one of the best at fixing Karter's defects! To be honest I was more disappointed about the surgery being put off because it meant more time away from home. You must first all understand that before everything happened with Karter that my oldest Addison did not spend but maybe three or four nights away from me since she has been born! Yea I know some of you moms must be thinking I am nuts for not always letting her go spend the nights with her grandmothers but Addison and I are connected at the hip! So needless to say being away from her this long has been really tough!
You would think that the hardest part of this would be the fact that Karter is having OPEN HEART SURGERY...but here I am upset more because I miss Addison. I am so torn because I feel like I am choosing one daughter over another. This is heartbreaking for me yet at the same time I could NEVER imagine being away from Karter during this time. Please do not get me wrong I am still very scared and anxious about Karter's surgery! I just do not think that it will officially hit me until I am not longer able to see her when I want to because she is back in the operating room. I love both of my girls dearly and I just hope that Addison understands why I am not at home with her!
Anyways back to my updates! Since we learned that Karter was "bumped" (that is how they put it) from her spot we have had some minor set backs. She had a really bad night Wednesday night and did not sleep at all! We were up with her all night because of an upset tummy. During this time she proceeded to have two big spells along with some other minor little spells. She did finally go back to bed about 6 o'clock that morning only to get up around 9 to eat. Right after eating and going back to sleep she had another attack, for a total of three! This attack took her a lot longer than normal to recover from. What I mean by these spells/attacks is that her oxygen level dropped really low like in the 30's, sometimes it can come up pretty quickly with a little more flow of her oxygen and sometimes it can take a lot longer for her to come up even with a high rate of flow. This spell this morning took her almost thirty minutes to come up to about a 75% oxygen level. Due to the sudden increase in spells we were sent back down to the ICU.
Once in the ICU Karter had a clear read of almost 97% oxygen! This read is of course with her being on some flow of oxygen. However, about 9 this evening she spelled again making four spells in 24 hours. This spell took her almost 15 minutes to recover from which is not a long time but not a short time either. Luckily on the ICU level they are able to administer some other types of drugs that should help her throughout the night and prevent any major spells. So for tonight she is still on oxygen and doing good. My mother, who has thankfully been here since Monday, and I decided that tonight we needed some real rest and have made it back to the Ronald McDonald house for a full night of sleep in a REAL bed! Since Karter is in the cardiac ICU she has a private nurse with 24 hour care. We decided that we better get some sleep tonight in order to better take care of her over the next few days!
As far as surgery goes Dr. Forbes is pretty booked and will not get to us tomorrow. He MIGHT however open up the OR for Saturday and get us in the first time slot. This would be amazing especially with her spells coming more frequently! Hopefully we will know more in the morning!
As soon as we know a date I will post a quick update! For now though I am going to get some real sleep!! Well as real as sleep can be right now!

Love,

The McHams!

P.S. More to come on Karter's Bow of Faith Project! I will be posting pictues of all of the bows we have received so far that have been given to the hospital, hopefully I can get these in tomorrow!

Today Is The Day...... Maybe????

Twas the night before Surgery...

Yes, Karter Bear goes in for surgery tomorrow afternoon. This will be an open-heart surgery. I can not believe that at only 11 weeks of age my daughter will be undergoing such an intense surgery. This surgery will correct both of her heart defects, the tetralogy of fallot and the AV Canal. Pretty much they will take the hole in her heart and patch it along with opening up a valve that is too small. This surgery will take anywhere from 6-8 hours and could even be longer depending on any complications they might run into along the way. They do feel confident that they will be able to repair the whole thing tomorrow. This does not however mean that she is repaired for the rest of her life. She will still require routine open-heart surgeries to ensure that everything grows with her body. Jeremy and I are scared but have put our FAITH in the Lord and we know that he will see us through this time. Below is a poem that we created with some help from my mother...we thought it would be fun and would help ease some of the tension that we are feeling. Hope you enjoy!


Twas the night before Surgery


Twas the night before Surgery, when all through the hospital
Nurses were stirring, patients were resting
The IV’s were hung on the pole with care,
In hopes that the children would leave them there.

The children were nestled all snug in their beds,
While visions of ice-cream danced in their heads.
And mamma in her gown, and dad in his shorts
Had just settled in for a quick little nap.

When out in the hall there arose such a clatter,
I sprang from the couch to see what was the matter.
Away to the door I flew in a scurry,
Tore down the blinds in a hurry.

The glow of the lights on the newly cleaned floor
Gave the lustre of diamonds to all those at the door.
When, what to my wondering eyes should appear,
But a cardiac doctor and eight little interns.

With a big white coat, so lively and quick,
I knew in a moment it must be Dr. Nick
More rapid than eagles his coursers they came,
And he whistled, and shouted, and called them by name.

Now Nakisha! Now, Aime! Now Chareen and Liz!
On Freddye! On Marci, on, on Staci and Libby!
To the top of the elevators, to the top of the floor.
Now dash away! Dash away! Dash away all!

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky.
So up to the OR the interns they flew,
With the charts of the patients and Dr. Nick too.

And then, in a twinkling, I heard on the floor,
The charting and documenting of each little one.
As I drew in my head, and was turning around,
Down the hall Dr. Nick came in with a bound.

He was dressed all in blue, from his head to his foot,
And his clothes were all sterile with antiseptic to boot.
A bundle of tools he had in his pack
And he looked like a med student ready to attack!


His eyes- how the twinkled! His face all stern!
His cheeks were like roses, his nose like a rock.
His droll little mouth was drawn up like a bow,
And the stubble on his chin looked ready to go.


The stump of a pencil he held tight in his hand
And the marks on the paper look spic and span.
He had a thoughtful face and solid hands,
That firmly grasped his list of demands.


He was lanky and pale, a mad scientist for sure
And I laughed when I saw him, for I was unsure.
A wink of his eye and a twist of his head,
Soon gave me to know I had nothing to dread.


He spoke not a word, but went straight to his work,
And corrected the heart, then turned with a jerk.
And laying his tools to the side of his table
Ensuring us all that the patient was stable!

He sprang from his patient, to his team gave a sign,
And quiet they became to listen for the first heart beat line
I heard them exclaim, as they sutured up with delight,
“The heart is working and she going to be alright!”


As we continue down this journey of Life with Karter we are so gratefully of every one's thoughts and prayers! You are all wonderful and our family could not ask for anything more. I will update tomorrow as soon as she goes in and as soon as she comes out! I can not wait for her heart to be all patched up and working correctly. May God put his grace on the hands of the surgeons tomorrow!


God Bless and Love,


The McHams'

Speechless....

Today I found out that one of Karter's CICU buddies past away. His name was Michael Cohen, and he was a precious baby boy who was just shy of being two weeks old. We were able to meet his incredible family in the waiting room of the ICU. His mother and father are both strong people who cared and loved Cohen with all of their hearts. It breaks my heart to know that not all babies from the Cardiac ICU unit make it to be angels here on earth. Some of these Cardiac angels have other plans created by God. My thoughts, prayers, and love go out to Cohen's family. I can not believe that we were just talking to them the other night and now he is gone. Life happens and changes so quickly. Losing a child is unimaginable to me and it leaves me somewhat speechless. My dear Karter can be fixed and we are all here trying to figure out when they are going to do the surgery...in fact we keep bugging them everyday. It makes me feel bad knowing that their time right now needs to be on those other sick babies. They have to prioritize and make sure that they can give accurate care to all of these little ones. Cohen I know was put on this earth to touch the lives of everyone who knew him. His mother Megan has an incredible blog that I encourage you all to read. It is www.inthiswonderfullife.com . Please keep this family in your prayers as they have been asked to do the hardest thing of all...give back their angel.

Karter is doing great tonight. The Cardiac doctor said we should know something tomorrow on a date for surgery. This date although can change based on the needs of the other children in the hospital. Since they are able to keep Karter somewhat stable with oxygen then she is not as critical as some of the others. I do pray that she does not ever become critical. I know she is just bored out of her mind being in this hospital. I have tried to entertain her with stuff animals and a little bouncy seat but there is only so much I can do. Poor thing has to spend so much of her day in her bed....it does not seem like fun. She is eating well though and continues to gain weight, in fact today she weighed 8lbs 11oz! So for now this is he only update that I can give. I hope to have more information tomorrow!

Thank you all for keeping up with our blog and continuing with your prayers. Tonight I do hope you remember baby Cohen.

Love,

The McHams'

UPDATE on KARTER'S BOW OF FAITH!

WOW!!! The turn out for bows has been amazing!!! We have had so many people wanting to send some from all over the United States! Tonight I have a very special announcement! Greg and Kathy Ferguson have been generous enough to donate a private P.O. box for us to use this year in order to ship bows out! So the new address is:

Karter's Bows

2702 E. Fifth St # 411

Tyler, Texas

75701

Yes they did give us the box of Karter's birthday! April 11th = 411! Very sweet!

I can not even thank them enough for doing this! They have also offered to send them up to Dallas if we are not able to pick them up in a timely matter. If you would like you may also include a small shipping donation to help them send them to the kids here at Children's! Thank you all for making Karter's Bow of Faith an amazing project! I already have bows that are ready to be donated to the kids! I can not wait to see pictures! Also here is the Facebook page for Karter's Bow of Faith! Please check it for updates and other news!

http://www.facebook.com/home.php?#!/pages/Karters-Bow-of-Faith/132759916750704

You guys are amazing!

Love,

Tara McHam

Looks like Karter and I have a new home....

Over the last two days we have found out very little. We do know that Karter will be having Surgery before she can come home unless some sort of miracle happens. She is on such a high flow of oxygen right now in which we can not provide her with at home. The surgeon (who reminds me of a mad scientist) came in yesterday and stated he was going to start tinkering with different mixes of her oxygen and flow level before making his final call. He DOES NOT want to do the shunt but instead wants to do the whole repair. Karter is continuing to have these Tet spells while she is sleeping even though she is on oxygen. The Mad Scientist (The Cardiac Surgeon Dr. Forbes) seems to think that she may have some type of sleep apnea. That is why he is tinkering with her oxygen before he makes his decision on when he will do the repair. He believes that something in her air way may be relaxing too much when she sleeps causing stress to her heart in turn causing the spells. He has put her on what they call a mixer which takes the oxygen and the flow level, which they measure in liters, and makes a unique combination based on her needs. She has been on a low amount of oxygen but on a high flow for most of the weekend. The high flow should have kept the air way open while she was sleeping allowing her to not spell in her sleep; however, she is still continuing to spell. In fact she had another two spells this evening. She recovered from each of these spells in a timely manner but they are still concerning the doctors.

In other words they have no idea what is causing these spells. Until they get in there and get her heart repaired they will not be able to determine if she does have some type of sleep apnea. We were suppose to see the surgeon today to see what his thoughts were on about when he would do the operation but he got caught up in another surgery. Hopefully we will see him in the morning and get some answers. The great news is Karter is finally gaining weight! SHE WEIGHS 8.9 LBS!!! She is still on supplement with my breast milk but it is working and doing its job! She is getting all of the extra calories that she needs in order to grow which is AWESOME as Addison Grace would say!

We were hoping that we would get an estimate on a surgery date today but it did not happen. From what the nurse said he is pretty booked for this coming week so it possibly could be next week before he can schedule Karter into the rotation. So it looks like Karter and I have a new home for the next few weeks. We have officially moved and and put our clothes away in the cabinet and dressers in the room. I am so lucky to have such a wonderful family who always makes sure that I have someone with me at all times during my stay. Jeremy's mom Terri has been here since last Saturday!!! My mom is coming in tomorrow to relief her for the week so that she can go to a much needed work conference. We had several visitors this weekend that were such a sight for sore eyes! Last weekend Carol, Dustin, Philana, Trista, and Derreck made it! I just love having visitors! It is nice to interact with the outside world every now and then!

This weekend Addison and Jeremy came up! I really do miss being home with her for she is growing up so much and changing constantly. Her vocabulary is AMAZING! In fact it is so good she already knows how to say D*M* IT very appropriately....a bad habit we will defiantly be breaking!! Haha! It is still pretty funny to hear her say it though I just have to remember to be strong and get on to her without laughing which sometimes is very hard! :) We did get out for a little bit this weekend and took Addison to see Toy Story 3 which she loved! If you have not seen it you need to go!

Below you will find some pictures from this weekend! Please enjoy and remember to keep Karter in your prayers! She is such a blessing to us and I hope that she will be a light in your life as well!

Love,

The McHams'

Nana feeding Karter!

Pa and Nana checking on Miss Priss...She looks very intrigued in her conversation with Pa!

Addison with her Frog purse! She was showing me everything!

Karter on the cell phone...

Papaw Cato looking over our sleeping Angel

Memaw talking to a very comfortable girl!

Cousin Marsha & Cousin Bonnie talking to a happy baby girl!

Addison giving Karter a kiss! Too sweet!

Karter finally finding her hand! Cousin Marsha gave her the cute bow!

Paw and Karter Bear!

Karters head wrap after having her hair washed!

Home will just have to wait....

More pictures to share!


Sweet girl rocking in a little bouncer!


GiGi burping the princess


Debra and Karter before she acted up!



Daddy's little girl...poor thing still had a tape mark from her canula that is now back on.

What a difference a day can make, or should I say what a difference a few hours can make. We were initially told this morning that we would be going home tomorrow. Karter was fully pulled off of her oxygen early this morning. I believe a million different thoughts ran through my head! How will I know when she is having a spell, will I be able to get her to the hospital in time, how will I sleep knowing that she could spell in her sleep....etc. I just had this huge rush of emotions on how I was going to provide the best possible care to Karter without her living at the ER in Tyler! Throughout the day and even into the early evening Karter's stats stayed in the near 70's-80's range which is what they expected them to do with her new dosage of medicine. By late evening Karter began to let her stats drop. My mom who had come down yesterday and stayed through this afternoon had just left and Terri's friend Debra had just come in when Karter started to act up a little bit. Debra had come to bring us the yummiest Mexican food for dinner and while we were suppose to be eating she was holding our little angel. I never imagined that Karter would have another spell being on the dosage of medicine she was on...but she did!

They called in a small crew of nurses, the cardiac doctor, and the respiratory team on staff. They were able to pull Karter's stats from the 30's back to the 70's then to the 80's with the help of a little bit of oxygen. Since they were able to do this in a fairly adequate amount of time they felt that Karter would be just fine....they were wrong again! Upon just a few minutes of everyone leaving the room she had another spell! At this time the Cardiac doctor decided that Karter is just not going to be able to tolerate her condition anymore. The medicine is not helping her at all and she is continuing to have spells when she is absolutely calm. Therefore we ARE GOING TO HAVE SURGERY NEXT WEEK! They are hoping that they will be able to put in a shunt in her valve that is spasming and causing these spells. This shunt should buy them time till she is larger and better able to tolerate the open heart surgery she will require. They do not want to do her big corrective surgery until this September. The Surgeon will come in tomorrow morning to consult Karter's case and decide what the best option is at this time. We will have surgery one way or another before we are able to come home. If she is to have the shunt surgery her recovering time could be any where from a week till a few weeks depending on several factors and on how well she is able to tolerate it.

At this time we do ask that you all continue to pray for our sweet angel especially since it looks like we are going to have to have more than just the one corrective surgery. So far she has stabled up tonight and hopefully will remain this way throughout the night. She is on oxygen and I do not see them weaning her off of it fully until after surgery. As soon as I know more I will update the blog and Facebook on what route the surgeon decides to take.

Love,

The McHams'

Karter's Bow of Faith on Facebook!

Here is the link to our non-profit organazation creating a little bit of Faith to those families who need it the most!

http://www.facebook.com/#!/pages/Karters-Bow-of-Faith/132759916750704

Thank you guys so much! The response to this has been more than I could ever ask for in this lifetime! Please continue to share this organization!

Love,

Tara McHam

Unevenful and Loving It!!

Today was the first day that I have ever enjoyed such an uneventful day of bliss. Karter had NO spells today which means that the medicine should be doing its job! Her O2 levels have bounced around a little today but majority of the time they have remained in the 80's. She is still on oxygen but is on a limited amount that they hope to have fully turned off by tomorrow afternoon! We were able to talk to the doctors today and he was a bit baffled by yesterday's big event. He said that there was no way that she should have had a spell since she was in such a calm state and was on her medicine. Therefore I believe they are a little hesitant to let us know when we will be going home. We are hoping to head out of here this weekend and very possibly could if her medicine continues to work and she does not spell again. I will say though that I am a little scared to be home away from these machines at night because of her last spell. I do hope that I can gain back my confidence in monitoring Miss Karter before we head out! All in all though Karter is doing great!

So tonight I thought I would also start sharing some of my stories of my crazy two year old Addison Grace. Addison lately has really taken on to Dora the Explorer! Bless her little heart she is just in love with Dora! She has really liked her in the last year or so and it has been so fun watching her love on her Dora things. She really lights up anytime she has something Dora. Well...I never in my wildest dreams thought that this love would almost become too much, but it has!!! Addison, to our embarrassment, now thinks that little hispanic girls with Dora hair cuts are actually in fact the REAL DORA! She can not comprehend that these girls are not Dora. The poor thing has now had several instances in which she has called out to these girls begging for them to come to her. She crys and crys, "Come mere Dora, come mere" "I neeb you Dora I neeb you". This is kind of funny but at the same time I am a little embarrassed that she is calling out to these girls. Looks like I am going to have to do some major educating on the difference in Dora and these little Hispanic girls because she just does not get that they are not the real Dora! :) She is a sweet pea though and I know she means well!

Thank you all again for your prayers for Karter and our family. I can honestly tell you that the power of prayer is amazing and that thanks to all of you and our faithful Lord Karter is doing great!

Love and Thanks!

The McHams

Code Blue

I thought I would open this crazy blog today with some sweet pictures!

Pretty girl wide awake! Thankfully her clothes are hiding all of her monitors!

Sully and Pink Bear watching over Karter

Hey guys what are you doing??

This should be about her stats; however this read is with oxygen being pumped into her body. Her oxygen level in this picture is 92, they would just like for it to stay in the 80's and go no lower than 75. One day it will read 100!!!

Mommy and I rocking....too bad I am not sleepy!

Today was the day we were suppose to be going home; however, God was watching his little angel and had other plans in store for us today!

So the bags were packed, packets turned in, and the medicine was in the cooler, the only thing missing was the final signature of our nurse on our discharge papers and for Karter's monitors to be pulled off (they save these till right before you walk out the door). While we were waiting on the nurse to come in the room to finish our process of discharging us I feed Karter that way she would have a full belly for the ride home. As I did this her PCT (Vitals Tech) came in and made sure that her blood pressure was good and fixed all of her cords so that they could get accurate vitals for the final few minutes of her stay. Upon finishing her bottle I tried to burp her; however, she was having one of those times where she only burped just a little bit. Therefore we decided it would be best to lay her on her side to sleep so that she would be better able to burp if she needed to. It is not uncommon for me to lay her on her side to avoid getting a flat spot on her head, plus she loves to lay this way and it seems to help with her nose congestion. As we were waiting on the nurse Terri and I both noticed that her stats were dropping into the 60's and pretty much staying there. Since they have someone to monitor her stats at all hours we decided not to bother her but let her be and ask the nurse if we needed to allow her to lay like this at the house or if it could cause her to loose oxygen laying like this. About 10 minutes later the nurse walked into the room saying that she was going to grab our discharge papers and be right back. She apologized for it taking so long but she mentioned that she had to discharge another patient and had done them first. (This is where we believe God had intervened for the day) Before she left I asked her my question concerning her laying on her side. She said that she would call the doctor but before she did that she wanted to see if her stats would turn to normal if she laid her on her back. She turned her on her back and low and behold they did go back up. She then proceeded to lay her back on her side and her stats began to drop. Since we knew that she was keeping her stats in the norm when on her back she turned her back to her back before she was going to make her call to the doctor to ask what could be causing this weird reaction. MIND YOU KARTER WAS STILL ASLEEP AND LOOKED VERY PINK! SHE WAS IN NO DISTRESS NOR HAD SHE BEEN PRIOR TO THIS TIME.

After returning her to her back Karter then started to go down hill. Her oxygen level began to go down and down so the nurse called her charge nurse. By time the charge nurse arrived Karter was clearing in the 50's so the charge nurse asked for a resident to be called in, by time the resident was called Karter was in the 40's. This set off another chain of reactions from the Children's Miracle Crew, they then pulled out the oxygen mask from the wall and put in a code blue. Karter's oxygen was now in the 30-40's and it was not coming up. We were in a full fledged Tet Spell. The Code Blue crew we began to find out involved a respiratory team, the CRASH CART (which was specifically asked for by the charge nurse), the cardiac team from the 8th floor, our cardiac doctor, the ER crew, and the ICU Cardiac Crew. All of these people were in the room in just a matter of seconds of her giving a code blue page. In the meantime the nurses were trying their best to get Karter oxygenated. When the doctor walked in he took over and began doing his tricks to handling a Tet spell. His drug administrator grabbed Karter's dosage chart off of the wall so that she was prepared for dosage of medicine for CPR. When she grabbed this sheet we knew it was bad, well and the fact that a PRIEST was called into the room to console us! After about 15 minutes they were able to get her under control with some oxygen. The doctor then explained to us that she had a Tet spell and that obviously we were not going home today. He told us that they would be trying to up her medicine and see how that worked.

So as of today we will not be coming home until they can officially regulate her medicine. A doctor did come in later this afternoon to check on Karter and I asked if having these Tet spells were common while they were sleeping and calm and he did share with me that they were not common at all. The spells are generally set off by becoming distressed. He also shared that our main cardiologist would be giving us more information tomorrow. So for now Karter is on oxygen and doing good. They did try weaning her early this evening and she just could not tolerate it so they put her back up on 5 liters at 40% which is not bad but is not necessarily good either. They will probably try to start SLOWLY weaning her late tonight or early tomorrow morning.

We are very thankful that we were not discharged first today and can only thank the power of prayer and the grace of God that we were chosen to be discharged second. Had we have been discharged first she would have had the spell on the way home and there is no telling what could have happened. Thank you everyone for your thoughts and prayers!

Please continue to share Karter's Bow of Faith!

Love,

The McHams

Putting the books down...

Karter once again is defying all of the odds! She is now breathing better than ever, she has been breathing in the 90 oxygen percentile most of the afternoon all on her own. I use to read books, tons of websites, and other articles on her conditions but I believe that I am done for the most part with my reading. I know that most of the things they write and journalize are for the "typical" or what they call standard down syndrome child and that not everything in there will pertain to Karter; however, the more I read the more I realize that she is definitely her own person! She rarely follows anything that the book says. She is such a fighter and I believe she is going to be the one that proves some of these doctors wrong. She already has proven to me that nothing is impossible! Every time the doctors come in to tell us something it is like they tell us the worse cause scenario. I understand that they do it to prepare us for the worse but every time they do Miss Karter proves them wrong! This may be the only time I will allow her to challenge an adult! I love it when she does this and proves that they do not really have an answer for everything because some things are left to the Lord and the power of prayer. I think that Karter and I are going to write out own book someday cause she is breaking all the rules! I may need some help with my grammar though and spelling if you guys have not noticed! ;) Oh and help with some of this medical terminology!!!

Anyways enough of my tangent! WE ARE GOING HOME TOMORROW!!! (Knock on wood!) I am so ready to see Addison! We did get to Skype with her tonight and loved it! Miss Addison went to gymnastics today at Gym Tyler and from what I heard she did an A-M-A-Z-I-N-G job! She is such a little hunny sometimes...that is when she is not being the Tasmanian devil! :)

I am about to go shut my eyes now! Thanks so much for all your thoughts and sweet comments! We truly do appreciate everything that you do!

Love,

The McHams

The Eighth floor loves Karter Bear!

So Karter was welcomed to the eighth floor today! They have decided that she had what they call a "tet" spell today. A "tet" spell is caused when the valve leading out of her right ventricle (This is the valve that is too small and it part of her tetralogy of fallot) spasms. This spasm shuts the valve and does not allow the blood to flow through it properly to the lungs. These spells are pretty common in Tetralogy patients although the severity of the spells can vary. The spells can be caused by too much stress or any sickness. They believe this spell was caused when she was deep suctioned at the ER the other morning. While getting suctioned out the other morning Karter through a pretty big fit about three or four times due to them sticking her with the suctioning machine. The stress from the situation caused her pretty serious "tet" spell.

When we go home this time we will be on an heart medication. Up to this point we have been really lucky that we have not had to be on any medication. They have put her on Atenolol which will help with her spasms and it will also help regulate her blood pressure. This medicine will have to be administered twice a day. There still has been no word on if we will have to take home a monitor or not. I kind of would like to have one at home to check her oxygen every now and then. I do not want to have to keep her hooked up all the time but it would be nice to have something to measure her oxygen level with at home.

As far as surgery goes it will still be later in the summer or early fall. We will find out more information on an estimated date tomorrow. So as I go to bed tonight Karter Bear is doing great still, she is finally off of her oxygen cannula and as long as she can stay off of that for 24 hours we should be ready to go! The Nurses on this floor are just as wonderful as the nurses on the 3rd Floor. They all love our Karter Bear and care for her as if she was their own. Children's Hospital is the best hospital we could have ever asked for to care for our sweet angel.

Thank you all for your kind words and prayers! Please continue to pray for her heart to be as sturdy as it can be until her little body is fully ready for surgery! Please also keep the patients of the 3rd floor (Cardiac ICU) in your prayers for as we left the floor today their were still a few very serious cases that need our prayer! I thank God everyday that at least Karter has a heart that can be patched up!



Love,



The McHams

The grace of the Lord is upon us!

Okay sorry I did not make it to the blog last night but yesterday was another incredible day! First off Karter gave Jeremy the best birthday gift ever! She came off of her breathing tube!!! They did have to put her on some oxygen through her nose in a tube called a canula. She at first did not seem like she was going to be able to tolerate being off of the breathing tube but with three changes to her camelot and with a small breathing treatment it worked! They did have to give her a steroid to strengthen her lungs but other than that she is pretty much breathing on her own! YEAHH!!!!
Now as far as what caused everything they are calling it a "tet" spell which has not really been explained to us but as soon as I find a doctor I will get more information on that! I believe it has to do with her tetralogy of fallot heart defect but as soon as I know more I will let you know! I am just glad that it was nothing to do with her respiratory system but instead was just an effect of something that was already wrong.
She is on some heart medication now that I believe she will have to continue at the house. While we were at home these last few week she did not have to be on any medicine but an iron vitamin. This to me was in itself a small miracle! I mean to have so many problems with her heart and essentially a small hole in the center I can not believe that she has not had to have any medicine until today!
As far as eating...she did get to eat last night. They started her off with some pedialyte and then moved her back to breast milk through a bottle. SHE LOVED IT!!! Now she is back to her normal self, eating, sleeping, pooping. I just love it!
Now we are just waiting on the doctor to come in and let us know what is going on exactly. I am still at this point if we will have to stay here until her surgery or if we will get to come home. I really think that with as well as she has been doing that we will be able to go back home for a while before surgery, but then the big question comes in as to when they will do the surgery...that is still up in the air at this point in time. I think they are now waiting for her to get up to at least 10-12 lbs and just a little bit older before they are comfortable enough that they will get a good repair. If they go in and repair now they said that they could fix it but it would not be a repair that they would feel like would hold her for a long time which would mean more surgeries. The Doctor once explained it to me like this: Right now her little valves that they would be operating on are not much stronger than tissue paper, so going in and cutting on them and sewing them back up would give them almost a temporary fix but would still be a hard surgery to complete to the the delicacy of her valves. Once she is bigger and older those valves start to firm up which would lead to a better complete repair.

THIS JUST IN!!! WE MAY BE MOVING UP TO THE EIGHTH FLOOR!!! AS SOON AS I KNOW MORE I WILL LET YOU KNOW! THE EIGHTH FLOOR THOUGH IS EVERYONES' AIM HERE AT CHILDREN'S!

Thank you everyone for your support and prayers for Karter Bear! Please continue to pass on our project Karter's Bow of Faith so that we may also help the other children up here! As soon as we know more on our possible big move today I will at least get it posted on Facebook!

Love,

The McHams

God is AMAZING!!!

The power of prayer is so wonderful! Yesterday Karter was all over the charts with craziness and today it was like a whole new world! SHE IS DOING GREAT! They have taken her off of all her meds except a little dose of antibiotics (as a precaution) and some pain medicine. Her intubation tube is still in but they have began to ween her from her oxygen and hope to have her off of her breathing tube by tomorrow. That's right TOMORROW! Today has been blessed with nothing but good news. They are still waiting on one virus test to come back but so far all of the others have been negative. They still have no clue what caused her "little" episodes yesterday but hopefully they will have more insight as they continue to monitor her over the next couple of days. So for now we are still playing the waiting game. Since she is off of her paralyzation medicine she did wake up a few times today while we were in the room. It was so uplifting to see her eyes full of life! Tomorrow after they pull her breathing tube and if her stats go up we will get to hold her again!

As I leave out tonight I would also like to make a small post about our new friends we met today! We have heard two other incredible stories today of babies fighting for their life. While Karter;s journey may be scary at least we know that in the end it CAN BE FIXED; however, for our new friends it is not so simple. We ask that you pray for baby Bella, for she went into surgery thinking that the doctor were going to be able to repair her and came out with a temporary fix. She eventually will have to have a heart transplant, which is not what her family was expecting to hear. Please also pray for baby Cohen as he is fighting hard for his life. He is only FIVE DAYS old and has already had three surgeries on his heart. He is truly an inspiration!

I can honestly say that although it is heart wrenching for me to watch Karter go through all of this I still feel so blessed. She could have always had a worse heart defect. I am so thankful that God put this angel into our lives and showed us into this other world of sick children. I have meet so many amazing people throughout this adventure and I can not wait to meet even more! Please continue to pass on Karter's Bow of Faith! WE ARE NOW ADDING SOMETHING FOR BOYS AND NEEDING DONATIONS OF BEANIES for them to wear! I am truly touched by the generosity and out pour of kindness for this cause! Thank you all so much for being so great to these children and to us!

Love,

The McHams

Karter's Bow of Faith

Okay ladies listen up! I am starting up a collection in HONOR of Karter for the little girls here at Children’s Medical Center. Upon walking into Karter’s room yesterday all I could see were machines, tubes, and lines hooked up to my precious angel. However, last night she was given another bow to put onto one of her wires….This changed everything!!! You would not even imagine the difference seeing a bow made on my little girl. Instead of seeing the wires and tubes I just saw a sleeping beauty. The bow made all the difference in the world to me and made me realize that she is still my baby girl!

So with this discovery I have decided to start up a collection in Honor of Karter called Karter’s Bow of Faith. I am asking for all donation of bows of any size, shape, and color! These bows will be given to the girls at Children’s Medical Center. You can mail them to me or we will pick them up. I will be attaching a little prayer to each bow and will even attach your name if you would like. Please help me help other families see their sleeping beauties amidst all of their medical problems. I know that by receiving these bows we will be lighting up the life of lots of little girls. Please pass the word and contact me with any questions here on our blog or on Facebook!
Thank you so much for your time and consideration! With your help I know Karter’s Bow of Faith will be a great success!

Love,
Tara McHam

P.S. We will have a P.O. Box for you to send all bows to! Thanks!

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