"Sometimes you have to stop worrying, wondering and doubting. Have faith that things will work out, maybe not how you planned, but just how it's meant to be"
~Book of Quote
I know it has been a while since I have updated on Natalie's actual health. We went to Dallas recently for a routine cardio check up, which we have been doing every 4 to 6 months, since she was born. Larry and I just had this feeling going into the check up, that surgery might be closer than we expected and we were not wrong.
Natalie's oxygen was actually really pretty good for her, she ranged from 84 to 88. Dallas is a little lower in elevation, so she is normally a bit higher than here in Amarillo, where she normally has been running 79 to 82.
Natalie's height and weight were also good. She has remained on a slight upward curve for the 15% in both height and weight.
We then started talking about Natalie's activity on a day to day basis. Larry and I have both noticed Natalie getting tired a lot easier. She does not fight me for bed or nap time and really does not play very much when awake. She will play some and then just wants to sit in our lap. She has been really cranky lately, which I had been choking up to her just being a 2 year old, but after talking with another heart mom, I realized that she probably just does not feel great all the time.
Natalie will do her best to keep up with other kids and her brother, which I wish I could keep up with too. However, I can tell after she does something as simple as walking up the stairs, her heart is beating so fast, you would think she has just been running outside for 30 minutes.
Dr. Zellers feels it is time for the next surgery, the fontan. I have posted below a picture of a normal heart and then Natalie's below it. I have this great book, that was given to me while I was at Children's when Natalie was born. The book has all different types of heart defects, procedures, medicine kids might be taking and other helpful information. The book is called, "It's My Heart," by The Children's Heart Foundation. There was an advisory board that helped with the book back in 2003 and our doctor, Dr. Zellers was on the board...how cool is that!
My pictures below are traced, no I could not draw a picture of a heart free-hand. I am kind of a perfectionist, so it took me 10 times to actually make it look right. I am also going to add a little description underneath from the book. We always have people asking us and it is just hard to explain, maybe because I am a visual learner, but I thought this might help you understand a bit more...
"Normally, the tricupsid valve allows oxygen-poor blue to pass from the right atrium to the right ventricle, where it is pumped through the pulmonary artery to the lungs to pick up the oxygen. In triscupid atresia, however, the tricuspid valve is not present. The only way for blue blood to get to the right ventricle is through a hole in the wall between the right and left atria. This hole, called an Artrial Septal Defect, allows oxygen-poor blue blood to mix with oxygen-rich pink/red blood in the left side of the heart and travel to the left ventricle where it is pumped out the aorta and throughout the body. This mixing of the blood will create a slight bluish color in the child, called cyanosis...
Ususally, when the back reaches six to twelve months of age, the Glenn shunt will be done to connect the superior vena cava directly to the pulmonary artery (Natalie had this done, January 2010, 3rd open heart surgery). The superior vena cava is the large vein that brings blue blood from the upper body to the heart. Mostly commonly surgeons complete a bidirectional Glenn shunt, which allos blood to go to both the right and left lung.
The Fontan procedure (surgery she is about to have), usually done when the baby reaches one to two years of age, connects the inferior vena cava directly to the pulmonary artery. The inferior vena cava is the blood vessel that brings blue blood from the lower body to the heart. Because the inferior vena cava is not near the pulmonary artery, a tunnel must be created within the right atrium to make this connection, called a lateral tunnel Fontan.
In some children, a small hole, or fenestration, is left in the lateral tunnel Fontan conduit as a "pop off" provision, in case high pressure developes in the connection between the inferior vena cava and the pulmonary artery (this will accure in Natalie). While on the heart-lung machine during surgery, the child's lungs tend to take on a little extra fluid and to become stiffer, which in turn causes lung pressure to be higher and creates more work to get blood into the pulmonary artery. The "pop off" allows some blue blood to escape to the left side of the heart to maintain lower pressure on the right side. A few months after surgery, the body tends to adjust to the Fontain repair, and the small hole, or fenestration, will either close on its own or can be closed surgically or via cardiac catheterization device."
Larry and I will be sitting down in the next week or so with his parents and my mother to discuss the best time for her surgery. I will be in Dallas with Natalie between 3 or 4 weeks; with his parents, my mother and Larry going back and forth helping with Carter. That is the other thing, Carter is now going to be in kindergarten, so we hate for him to miss much school and it will be better for him to stay on a rountine as much as possible.
Larry and I have started explaining a little bit more about what is going to happen with Natalie. He knows she has a hurt heart and that the doctor's are going to try and fix it more. He knows her chest will be cut open, but that she will be asleep so she will not feel anything. He is an amazing older brother and very protective of her, so I think this will be hard on him as well.
Natalie will need a heart cath prior to surgery, which we need to schedule as well. A heart cath is normally a day procedure. However, we have been blessed to not have a heart cath done since she was a baby, so I am thinking this time it will be more difficult on us, because we will have to keep her still and lying down for so long after the procedure.
With all this being said, yes, my anxiety level is out the roof! I knew this was coming and I look back over the past couple of months and see how God was preparing us for this. A few months ago, Larry and I were seriously looking at finally buying a home, possibly even building, but every door just kept closing. We always said we would wait until after her next surgery, but timing is so uncertain and we were getting a little antzy. Not sure if you are all aware or not, but Larry has been going to back to school as well. A month ago, he came to me and said he has been praying about it and feels he needs to take a semester off. Wow, I think God was getting things lined out for us back then. I should know by now, not to worry, that God plans for me.
I would like to ask you all for prayers for our family as we prepare for this next surgery. Prayers for the logistics to fall into place with Carter and timing. Also, prayers for the doctors as they will be getting ready for Natalie. But most importantly prayers for our family and our hearts as the days and weeks come closer. I know in my heart that is time, God planned it out for us and the doctors tell us also, but I am just not ready. I am not ready for my baby to go through this again, and I am terrifed to be honest. I can't let myself think about it all to much, because my mind is my worst emeny right now. I have already had sleepless nights. I just want to hold her and love her. I know whatever happens, it is God's plan, but I am just not ready for this. If you talk to me and I seem distant, it is not because I do not appreciate it, but because I am trying so hard to keep my emotions in check for fear of losing it. I also keep telling myself that at least Natalie is young enough and will not hopefully not remember any of this.
I will be keeping you all posted as we start scheduling the surgery and heart cath. I am hoping that once we have a date, I will maybe be more at peace, but for I am a mom, so I doubt it.
Thank you all for your continous support of our family and our sweet Natalie! I know one thing for sure, we would not be where we are today, without the power of prayer and our Lord and Savior, Jesus Christ!
