Thursday, July 29, 2010

update 7-29-10

We made it to Dallas! We are all settled in at the Ronald McDonald House and waiting anxiously for Aug. 9th! We are so relieved to be here in case I go into labor early. We met with my new Doctor down here and we also met with the pediatric cardiologist that will be over seeing Ella's echo cardiogram after she is born, we also met the Dr. that will be doing the first procedure (opening the restrictive PFO) and we met the ICU nurse that will be personally caring for Ella. We have also taken a tour of the facility, we should be getting a call from the surgeon today, we have another appt. on the 3rd with my Doctor and a consolation with the surgeon on the 5th. Needless to say it has been busy!!! This time is so difficult, we are 10 days away from little miss Ella entering the world and that FREAKS ME OUT! But I am so ready to meet this sweet baby girl that makes me laugh so much! After all the appt. we have had since being here everything is still on track. She has not improved but she has not gotten worse either! The plan is still to deliver her via c-section the morning of Aug. 9th. At that time every day is a guessing game. If all goes according to plan she will have the first procedure immediately and than 2 to 7 days later her first open heart procedure, followed by about three to four weeks in the hospital to recover. That is the plan but there are so so so so many variations to the plan because every baby is so different and they don't know her exact condition until she is born. One of our biggest prayer requests at this time is for her lungs to develop properly, there is no reason to believe that they have any problems; however, the doctors informed us that proper development of her lungs often times can be the difference of life and death in these babies. After every appt. I am reminded of the severity of her condition and it is scary, but it's at those times of fear that I am also reminded of God's power and how trusting in Him and walking by faith blindly, hard though it may be, is the ONLY way to get through this season. Leaving home was emotional for us, knowing that when we come home, one way or another, our lives will forever be changed. This is never how I imagined life would be, married almost three years to someone incredible, almost 22 years old, getting to have a sweet baby girl,... than surprise the whole world flips upside down and leaves you gasping for air. I have always known we are to trust God with everything and each day is a gift. But knowing and living that truth are two very different things. I find myself thanking God every morning for the gift of Ella for at least one more day, not knowing what tomorrow holds for her, never in my life have I ever daily thanked the Lord for life in its self. I am just coming to the realization that for the rest of the days that God allows me to spend with Ella, her life will be a gift. She will never be "fixed" they can't fix her heart they can only try to make it work the best they know how. She will forever be at risk of having a stroke or her heart giving out because it has to work too hard. I could lose her at any time for the rest of her life and that is a future that without God would be impossible. I know nobody is promised tomorrow, but I think we take life for granted too often. I have given baby Ella to the Lord several times, but somehow in my moments of weakness I seem to want to take her back as if some how I think I could take better care of her. Than I realize how foolish that is and I give her back... I think I will be learning that lesson for a while, God can take far better care of her than I can and she is His anyway!!! Why can't I get that in my head! One of the lessons I have learned by watching Jon through all of this is that even though it hurts and it is scary, if we just trust God's plan for our lives the anxiety is not near as great. We can not control what happens and we can not change what is going to happen so why worry about the future. Instead we should cherish the present! So that is what we are trying our very best to do (Jon is better at that than I am :) ) We are loving this baby girl and no matter the outcome we are so blessed to have had her in our lives! God is good all the time, that is where our hope lies. He can do a miracle!!!!!

Wednesday, July 7, 2010

update 7-7-10

Well we went down to Dallas yesterday to meet the pediatric cardiologist and the obstetrician. We also had an hour and a half long echo cardiogram. After the echo cardiogram we met with the cardiologist to discuss the plan. After Dr. Lemler had thoroughly examined her heart he told us that is a very good thing that we are planning on being in Dallas because her case is very severe. He told us that she does have hypo plastic left heart syndrome and the restricted PFO, which we had already been informed of this. He told us that her PFO was very restrictive and this was causing her pulmonary arteries to bulge, he said they are the worst he has ever seen. Then he said because of the bulging she may have unrepairable damage after she is born, in that case she would require a complete heart transplant. We will not know what the extent of the damage is until she is born. This was of course dis hearting to hear. Dallas has had about 7 to 10 of these cases but they couldn't give me statistics because they have no idea how the babies will do long term since being able to cure a baby with both conditions is so new. We are grateful that medical teams have made the progress that they have, because now we have some hope. After our appointment with the cardiologist, we met with the new obstetrician and had an ultrasound done just to check on everything else, she is one big baby :) she already weighs 5lbs. 9 oz.!! I am guessing at this rate she will be 9lbs. something when she is born, but that's just a guess! I am not looking forward to the massive amount of growing I will be doing over the course of the rest of this pregnancy. But on the up side, everyone got a big grin when they heard her weight and all the Doctors and nurses agreed and said the bigger the baby the better! Originally they were going to do a c-section at 37 weeks, but the doctors in Dallas agree that she needs to develop as close to full term as possible so that she only has one battle to fight, with that being said we have a c-section scheduled on Aug. 9th at that time I will be 39 weeks pregnant. However because of the high risk of my case Jon and I will be moving down to Dallas some time in the next three weeks and will remain there until we bring our sweet baby girl home. We are unsure how long our stay will be but it will most likely be two months if everything goes perfect, and it could be several months if there are complications. We are beyond grateful for everything that the Lord is doing through our friends and family, we are humbled by your prayers, love, and support. Even though this is the hardest thing we have ever had to endure God is leading our every step. I am so happy to report that everyone of the staff members that we met in Dallas from the Secretaries to the Doctors were so supportive and helpful. This was a blessing to us because we have a team of doctors here already so switching all our doctors was intimidating to me to say the least. I have one more appointment with the perinatal specialist here and one more appointment with my obstetrician before we move to Dallas. July 27th will be my next appointment in Dallas and than sometime between then and Aug. 9th Jon and I will meet with the surgeon and take a tour of the facility where Ella will be cared for. We know that Ella is in the Lord's hands, but for me right now it's a constant state of fear and emotion. Being in Dallas made it all seem more real somehow, more severe. Having so many doctors and specialist all telling me "this is bad", and "this will be the hardest thing you will ever go through in your life". Knowing that Jon or I won't be able to hold her makes my heart sad especially since they don't expect her to make it though the first surgery. It's one of those things that if there was no chance I would just hold her until her last breath, but knowing there is a chance I can't take that away from her, but after everything that has happened I just want to hold her in my arms and look into those eyes and have her look back at me. I want her to know that I love her and that I am there with her. Over the course of this pregnancy their have been many trials and so much pain both physically and emotionally, but I can't help but think about if she doesn't make it, and the pain I have felt for so long now will only be the beginning of the most pain I have ever felt and that pain will last for the rest of my life. I realize I'm not the only one to ever lose a child or even to lose someone prematurely, but right now the future seems unbearable. I am trying to have hope but when everything around you says it's not likely fear seems to somehow grab hold and hang on for dear life. Please pray that Jon and I will remain strong through this time, that in the next 5 weeks we would be able to cherish every second with our baby girl, that my sickness would subside, that we will have a peace that surpasses all understanding, that God would heal Ella's heart completely, that she would not need a complete heart transplant, that she would live to be the light that we know she will be. We love you all so dearly and we covet your prayers. May you know Christ's love in your own lives!