Well, we had a pretty long, stressful day today. Natalie had her catheter surgery, and we got the results back. Her pressures are quite high, and her ventricle hasn’t grown. However, this could very well be because she hasn’t grown either. She has actually lost weight since we got home from Boston in January.
Initially, the surgeon’s thoughts were that we should think about abandoning the heart repair. This would mean that we either reverse all the work that’s been done on her heart and go with the single ventricle pathway, or we move to a heart transplant. Yeah, we were devastated. The single ventricle pathway carries with it a 70% chance that Natalie will survive to adulthood, and she would probably need a transplant in 10-20 years. We spent about two hours thinking that this was what the future held for Natalie. It was not a fun two hours for Heidi and I.
Then, we spoke with the attending cardiologist, and she had a much better outlook. They had met as a team, and they were in agreement that it’s way too early to give up on her heart as it is. She is so very close to having a fully functioning heart, and they want to give it a chance to develop. They are adjusting medications so that she can eat better. This will cause growth both in her, and in her heart. If she isn’t able to increase her food intake over the next several days, then they will proceed with giving her a feeding tube. That way, we can be sure that she will get enough food in order to help her grow and develop.
We pray that this works, and that she can have a bright future with a normal heart. Only time will tell. We’ll know a lot more in another 2-4 months, so until then, we’ll make sure that she eats plenty.
We want to thank everyone for the prayers and support as we’ve gone through this latest ordeal. We’ll be sure to keep you updated as we move forward.
Almost 3 months to the date we are back in the hospital again, and always on these surprise adventures. We have enjoyed being home with nothing real exciting to post about. Brad has been back at work and I have been back in the saddle as well. Life was pretty quiet except our weekly visits for Natalie to have her echos and check ups.
Over the past month we have been closely monitoring Natalie’s weight gain or lack thereof. Her heart function appeared to be stable, but she has not been able to put on any weight. When we left for Boston, Natalie weighed about 14 and a half pounds. A very happy and chubby baby. When we left Boston on January 14th, she weighed about 12 lbs. 8 ounces. We expected the weight loss following the surgery and anticipated that she would gain it back once we were home and back in our normal routine. Tuesday Natalie weighed in at 12 lbs. 1 ounce. She had lost considerable amount of weight over the week and has not been eating well. We know that the diuretics that she is on reduces her appetite, but at this point we are not able to reduce the diuretics and improve her eating.
So Tuesday upon seeing the scale read 5.49 Kilos, Dr. Fernandez sent us immediately, to Minneapolis. We had out appointment at 1pm, and by 5:30 we were on the road. We arrived at Amplatz at 1:30 am and began the process of getting Natalie a feeding tube placed to help with her feedings. It’s not that Natalie doesn’t eat, she just doesn’t take in the volume to get the calories that she needs. She only takes in about 15 ounces a day and should be taking in about 32, plus her baby foods.
Once we arrived here, the doctors really wanted to more closely examine the heart to see if the pressures and heart functions are good. We know that the diuretics are causing some of the eating issues, but we can’t reduce them because of the fluid build up if she doesn’t have them. So, they will be doing a heart cath tomorrow to take a good look at the pressures and function of the heart before we do anything with the feeding tube.
At this point, we are starting here to see if we can tweak medications and have better squeezing from her stiff left ventricle. If we get better squeezing with an additional medication we hope that we can reduce her diuretics and increase her appetite. This process will take the better part of a week to evaluate. We have decided to continue with the feeding tube to allow us to give her additional nutrition, but hope that it is not as critical to her weight gain if her appetite returns.
If this process doesn’t improve her overall health, then we go onto the next step which would be more severe interventions that we will explain if needed. Right now we just need prayer and the help of God to heal her heart and make it function well.
We will update you all with the cath results tomorrow. Thank you for the love and support; and of course the prayers for Natalie, Brad and I.