I am up late-- alone. My hubby is gone with our two sons to BYU for their annual father son sports camp. I am excited that they have this time together. I am excited for my time with my girls.
I know I'm tired, but I just happened to need to look up something on a website before bed. It was a mistake. I should learn. I found a blog-- read something and moved onto another blog. A blog that hurts my heart! It actually is a blog I have read before, but needed reminding. It is a blog of a family who lost their sweet little girl, Gracie, from a congenital heart defect. If you want to cry like a baby, go here.
In the middle of my cry, I heard another cry.. my name. Kendra is calling me from the top of the stairs because she needs her sippy cup filled. She is almost 4 years old yet she is still so thirsty like when she was on diuretics. I knew after tucking her in to sleep that I needed to write about her.
I am crying, yet I keep reading. My hubby would be upset with me for reading this blog. Maybe you wouldn't cry like I am because it doesn't hit so close to home. It brings back vivid memories of life when Kendra was first born, of the struggles she went through, of the fear and pain I felt to watch her struggle. It also brings vivid thoughts to mind of... what if.
I remember vividly right before Kendra was delivered. Our delivery room was swarming with medical people waiting for her to be born. I looked up crying at my sweet hubby and said "I am afraid for her." He said it would be ok. And then this scripture came to mind. I always cling to the scripture in 2nd Timothy 17 "For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." It has always given me comfort. I have felt great power from God to know how to help Kendra and how to make it through the struggles. Sometimes it is hard to love her when she is so stubborn and needy, but I realize now that she could be a lot worse off. I feel blessed.
I have realized through reading this other blog that I have a sweet daughter that has beat the odds, that is "thriving" compared to some of these kids, that has come so far. I say thriving very loosely... she thrives compared to a lot of heart patients. She can walk up and down stairs... you can hear her coming with every labored breath. She gets tired walking longer distances... like from the car to the store, so she is carried. Her oxygen saturation levels are in the high 60's sometimes and mostly in the mid 70's... a level that keeps asthma patients in the hospital without release until they are in the 90's. It is her norm. Her fingers and toes are enlarged... the blood vessels have naturally increased in size to increase the surface area of oxygenated blood to those extremities.
I realized that I have written about my sweet Kendra's ordeal in my journal... for my eyes only. Yet some people do not know what she has been through or seen the horrific pictures we have. They have never left my minds eye.
I think it is just my time to cry or maybe I am trying to cope with the reality that Kendra's next surgery is drawing very close and I have taken for granted the fact that she is "okay". As okay as a little heart girl gets.
She is okay even when people think she is soo cold because her lips are completely purplish black. She is okay even when an off duty paramedic is in a panic because he thinks she is dying/can't breathe/has too low body temperature because she is so dusky. She is okay even when all the elementary school kids ask "why does she look so weird" or "why are her fingertips so fat" or "she is so cute... ya except that weird purple stuff." She is okay even when every well intentioned stranger asks "Did you get into your mommy's lipstick" or "have you been eating a blue lollipop?"
After 4 healthy kids and one miscarriage right before Kendra, we knew something was coming... life was too easy. We found out that our next baby girl had what is called DORV, double outlet right ventricle-- meaning that both of the outlets-- the Aorta and Pulmonary artery come out of the same chamber and do not cross each other like normal. She does not have a septum which divides the four chambers. So essentially she has 2 chambers with one common valve. She also has Situs Inversus which is the flipping of all the organs-- they are all mirror image. This made the doctors think she had some chromosomal defect. She was tested and doesn't. From 23 weeks we have been prepared for the worst and feel so blessed to have made it this far with her.
Kendra was born September 29, 2006-- at 38 weeks. She was purposefully brought early so I wouldn't have her on my own. Ten days later she had her first and worst surgery... the first in the series of 3. !WARNING! These pictures are not for the faint of heart.
This is a day later-- she actually looks more cleaned up here. She had a blue tinge when I first saw her and she was a lot more swollen. When I first saw her I couldn't come close to her.. she was hard to look at. This first surgery they sew the Aorta and Pulmonary artery together to make one large aorta. Then they sew the pulmonary artery to the lungs. It is all about re-routing blood... not fixing the interior of the heart.
Way too many monitors, tubes, wires, and lines all in one little baby. It was overwhelming to look at.
Because of the length of the surgery (I can't remember if it was 9 or 13 hours.. its in my journal) the heart swells. Therefore, they cannot shut her chest. This is a gortex piece laying over her open chest-- you could see her heart beating under this piece. She is being given a heavy paralytic since movement would cause severe damage to her heart. Small pacemaker wires (blue wires) are directly connected to her heart... just in case she needed a jump start. The red-ish tubes are drainage tubes from the heart and chest cavity. She had a lot more in her lower chest.
Three days later her chest was ready to close-- her lucky day was Friday the 13th. She is still paralyzed so she wouldn't move. A couple times she was breathing over the vent so they had to increase her paralytic. When they say staples-- they mean staples. Not a pretty sight.
Vent was removed-- not a happy camper though. Her cry was a faint rasp due to the irritation of the vent being in for over a week. It was hard not to cry when she did-- she could barely be heard. She finally came home from the hospital on November 10th, 2006. She was in the hospital a month and half.
Second surgery was 3 months later in February of '07. This one was a little easier. In this surgery they disconnect the Superior Vena Cava and connect it to the pulmonary artery which is already connected to the lungs. This made all the blood from the upper body go straight to the lungs. There was so much pressure from this new change that it caused severe headaches and she had to sleep propped up for a few days after returning home.
The vent was removed quicker this time and she was "tented" with oxygen. She was not a happy camper again.
She came home 6 days later with a new toy-- oxygen and a lot of tubing. It took a lot of getting used to. She has been through physical therapy, Synegis shots (RSV shots) for 2 years which was the cost of a small car, oxygen for 6 months, laser treatments for her birthmark, daily meds (the most being 6 different ones a day) and lots of CATH procedures.
And now in a month we are going to do it all over again. Her third and final surgery (cross our fingers) is in July. They will go in and disconnect the inferior vena cava and connect it to the pulmonary artery which goes straight to the lungs. The final connection makes a "+" sign from the Superior, pulmonary arteries and inferior vena cava. So all her blue blood will bypass the heart and go straight to the lungs out to the body. It will help her heart work a little less.
We are hopeful that this will buy her a few more years. A heart transplant is most likely years down the road since her heart will tire out sooner than our own. But there is never a guarantee. Some of you may think I am totally being negative, but I feel like being in tune with reality makes time she has with us a better gift. I guess if I think the worst, I will never be disappointed. (But secretly, I am always prayerful.)
I'm not looking forward to her next surgery. There is always that fear in the back of my mind. We feel now that we have gotten used to our new "normal" that life has been easy. What is coming next to shake us up?
My understanding of the gospel and the plan of salvation is my saving grace-- it makes it all okay in the end. No matter what the outcome.
At least we have been able to experience a little bit of HER!
Way too many monitors, tubes, wires, and lines all in one little baby. It was overwhelming to look at.
Because of the length of the surgery (I can't remember if it was 9 or 13 hours.. its in my journal) the heart swells. Therefore, they cannot shut her chest. This is a gortex piece laying over her open chest-- you could see her heart beating under this piece. She is being given a heavy paralytic since movement would cause severe damage to her heart. Small pacemaker wires (blue wires) are directly connected to her heart... just in case she needed a jump start. The red-ish tubes are drainage tubes from the heart and chest cavity. She had a lot more in her lower chest.
Three days later her chest was ready to close-- her lucky day was Friday the 13th. She is still paralyzed so she wouldn't move. A couple times she was breathing over the vent so they had to increase her paralytic. When they say staples-- they mean staples. Not a pretty sight.
Vent was removed-- not a happy camper though. Her cry was a faint rasp due to the irritation of the vent being in for over a week. It was hard not to cry when she did-- she could barely be heard. She finally came home from the hospital on November 10th, 2006. She was in the hospital a month and half.
Second surgery was 3 months later in February of '07. This one was a little easier. In this surgery they disconnect the Superior Vena Cava and connect it to the pulmonary artery which is already connected to the lungs. This made all the blood from the upper body go straight to the lungs. There was so much pressure from this new change that it caused severe headaches and she had to sleep propped up for a few days after returning home.
The vent was removed quicker this time and she was "tented" with oxygen. She was not a happy camper again.
She came home 6 days later with a new toy-- oxygen and a lot of tubing. It took a lot of getting used to. She has been through physical therapy, Synegis shots (RSV shots) for 2 years which was the cost of a small car, oxygen for 6 months, laser treatments for her birthmark, daily meds (the most being 6 different ones a day) and lots of CATH procedures.
And now in a month we are going to do it all over again. Her third and final surgery (cross our fingers) is in July. They will go in and disconnect the inferior vena cava and connect it to the pulmonary artery which goes straight to the lungs. The final connection makes a "+" sign from the Superior, pulmonary arteries and inferior vena cava. So all her blue blood will bypass the heart and go straight to the lungs out to the body. It will help her heart work a little less.
We are hopeful that this will buy her a few more years. A heart transplant is most likely years down the road since her heart will tire out sooner than our own. But there is never a guarantee. Some of you may think I am totally being negative, but I feel like being in tune with reality makes time she has with us a better gift. I guess if I think the worst, I will never be disappointed. (But secretly, I am always prayerful.)
I'm not looking forward to her next surgery. There is always that fear in the back of my mind. We feel now that we have gotten used to our new "normal" that life has been easy. What is coming next to shake us up?
My understanding of the gospel and the plan of salvation is my saving grace-- it makes it all okay in the end. No matter what the outcome.
At least we have been able to experience a little bit of HER!
