**I'll add a little disclaimer here since many of you don't even know what happened when she was born on May 21st. I went in for an additional ultrasound at 32 weeks (May 14th) expecting everything to be normal and instead they found that Whitney had a lot of fluid in the pleural space surrounding her right lung called pleural effusion. This condition can be very serious in utero, so they gave me another ultrasound a few days later on Thursday. At that point, they thought her condition was sever enough that they admitted me to have an emergency c-section and gave me a steroid shot since she was soo early. Kyle gave me a blessing and 30 mins before the c-section the surgeon took another ultrasound and decided she was stable enough to let the steroids kick in and they didn't deliver me that day. We had another ultrasound Friday and one again Monday, May 21st-this time they decided she was getting really sick (bad edema/swelling everywhere, fluid around both lungs and her liver, etc...) so they sent me to the UofU Hospital and they performed an emergency c-section. They ran a million tests on me and Whitney to determine the cause of the pleural effusions and finally when she was 9 days old they discovered she had a congenital chylothorax, which is a problem with the lymphatic system that causes the thoracic duct to leak lymphatic fluid into the pleural space surrounding the lungs. All of our non-surgical treatments have failed over the course of the last 5 weeks and the email below will explain where we are at now. Sorry it is soo lengthy and detailed, but this is sort of how I am keeping track of my thoughts as well until I have the energy to actually journal everything! We are holding a fast for Whitney on Sunday, so if any of you want to add us to your prayers this fast Sunday, we would greatly appreciate it! We appreciate all your kindness and support!
Hello everyone!
Sorry for the lack of updates this past couple weeks. It has been a really rough past couple of weeks with our sweet Whitney. She is 5 1/2 weeks old now-hard to believe! We spoke with the surgeons yesterday and they gave us a couple options. Our first option is through interventional radiology-they will do a radiology scan (like a live x ray) with a lipid based dye into Whitney's lymph node to see where the dye goes and if they can spot the leakage(s) or problems with the thoracic duct. If the thoracic duct seems like an easy repair, the radiologists might be able to insert some chemical substance that would clot off the thoracic duct and hopefully resolve all the leakages. The problem is that since Whitney has a PFO in her heart, there is a small chance that the lipid dye could travel to her brain and cause a stroke, so the Radiologist is very hesitant to do the scan and keeps 'consulting' his colleagues and mentor to try to decide whether or not he will do it at all. He will decide and let us know on Monday his decision and if the answer is yes, he will do it next week. Depending on what the ct shows, and if the radiology intervention (with the chemical) is not an option, there are two surgical options. But first, he will have to do a surgery to biopsy a piece of the lung. They can't get the biopsy with a bronchoscope, so they have to go in from the outside, which is more invasive. The biopsy is so they can test Whitney for a disease called pulmonary lymphangectasia, which is a fatal disease and there are no treatments for. If she has lymphangectasia, there is nothing else we can do. If it is not lymphangectasia, and depending on what the scan shows, the surgeon will either do a thoracic duct ligation or a chemical pleurodesis. Both of these surgical options are risky and have major potential side effects. These surgeries are definitely not ideal, but they are the options available to us right now. We're frustrated that we have to wait until Monday to know whether or not we can even do the ct, but we are trying to be patient. Basically, if she has lymphangectasia she will not survive. If we don't do surgery she will die since none of the other treatments have worked for her condition (congenital chylothorax), the surgeons have said that the surgical options are risky and she may not even survive surgery, and there is a good chance surgery may not be successful in which case there is nothing else they can do for her. This means that there is a chance she will live, but there is also a good chance she may not survive. This is such heartbraking news for us since we have been soo hopeful from day one that she would live-we just thought she might be in the NICU for a long time. We are still trying to be hopeful (even though we feel hopeless) but we are just trying to rely on the Lord and see things from an eternal perspective. We know that no matter what happens, sweet Whitney came to our family for a reason and there is obviously a lot we are to learn from this experience. For the time being, apparently Heavenly Father needs to teach us (mostly me!) patience and long-suffering.
My sweet sister Angie has just been here taking care of our babies for three days so we could spend lots of time with Whitney. She just left and Kyle doesn't work again until Saturday so we will take some time to spend with the kids since we haven't seen them much since Saturday and we will take turns being at the hospital.
My dear friend, Tiffany Jack, met us at the hospital on Sunday morning and took some beautiful photos for us. She was literally an answer to my prayers a few weeks back. I was really struggling a few weeks ago and I thought to myself that it might be a good idea to get a photographer to come take some photos of us at the hospital. Then I put that thought on the back burner because I didn't want to add one more thing 'to do' or to worry about to my plate, so I figured we wouldn't be able to do that right away because I didn't want to stress about it. That very same day, I received a message on facebook and it was my friend asking if we might want her to come to the hospital to take photos. I couldn't believe the timing since I had just been thinking about it a couple hours earlier. It actually made me cry because I knew how great a photographer Tiffany is and I was soo grateful that she received that inspiration and desire to help us out. Well, I messaged her back and said we would love to, but maybe next week when Whitney was more stable and we could hold her, etc...Well, the next week came and Whitty was worse, so it didn't happen. Last Friday evening, we were told by the docs to realistically prepare for the fact that Whit might not make it. After four weeks of really high hopes (expecting her to live-it was only a matter of time until we can bring her home) to being told she may not make it, we were DEVASTATED. I messaged Tiff that night and told her we would love her to take pics, and soon. We set it up for Sunday morning. It was hard and emotional (for us and Tiff!) but we were soo relieved we were able to take these photos. She did a beautiful job and was soo thorough and such a thoughtful, kind photographer. I would HIGHLY recommend her to anyone because she is truly talented. Anyway, she just posted some of our photos to her blog. Here is the link if you want to check them out: http://www.whenskiesaregreyblog.com/2012/06/baby-whitney.html
We are still hopeful for my sweet baby girl. How can you not be after seeing these beautiful photos of her? She is a beautiful baby who should NOT be sick! We are hoping for the best, but still preparing for the worst. The docs are still giving us some options and some hope but they really are trying to prepare us for the worst as well, which is not an easy thing for them or for us. It's such a hard, sad thing to think about-the thought of losing a child and I cannot comprehend the pain that parents must feel going through this. We are in soo much pain at just the thought of what may lay ahead. We have some fellow NICU friends with a little baby boy names Edward who came prematurely at 28 weeks (he was born 4 days after Whitney and currently only weighs barely 3 lbs). We talk to them about every other day and we each find out how our babies are doing. Well, I found out last night that they actually lost their first baby in addition to having their second child in the NICU. their first son was born with the cord around his neck and only lived four hours. After speaking with them, it seems like a miracle that any of us have healthy children, with all that could potentially go wrong.
Anyway, please continue to keep us and Whitney (and even Baby Edward and his sweet parents) in your prayers-we could definitely use them! Whitney is truly an angel and has already taught us soo much in her short 37 days of life. We have been taught, led and inspired through this whole process and are definitely feeling the comfort and love of our Heavenly Father more now than ever before. We are soo blessed and are soo lucky to have the friends, family and ward family that we do. Thank you all, and I will try to update more often as we know more. It was too hard with all that has happened in the last couple weeks, but I will try to be better!
Love you all!
Sam
Hello everyone!
Sorry for the lack of updates this past couple weeks. It has been a really rough past couple of weeks with our sweet Whitney. She is 5 1/2 weeks old now-hard to believe! We spoke with the surgeons yesterday and they gave us a couple options. Our first option is through interventional radiology-they will do a radiology scan (like a live x ray) with a lipid based dye into Whitney's lymph node to see where the dye goes and if they can spot the leakage(s) or problems with the thoracic duct. If the thoracic duct seems like an easy repair, the radiologists might be able to insert some chemical substance that would clot off the thoracic duct and hopefully resolve all the leakages. The problem is that since Whitney has a PFO in her heart, there is a small chance that the lipid dye could travel to her brain and cause a stroke, so the Radiologist is very hesitant to do the scan and keeps 'consulting' his colleagues and mentor to try to decide whether or not he will do it at all. He will decide and let us know on Monday his decision and if the answer is yes, he will do it next week. Depending on what the ct shows, and if the radiology intervention (with the chemical) is not an option, there are two surgical options. But first, he will have to do a surgery to biopsy a piece of the lung. They can't get the biopsy with a bronchoscope, so they have to go in from the outside, which is more invasive. The biopsy is so they can test Whitney for a disease called pulmonary lymphangectasia, which is a fatal disease and there are no treatments for. If she has lymphangectasia, there is nothing else we can do. If it is not lymphangectasia, and depending on what the scan shows, the surgeon will either do a thoracic duct ligation or a chemical pleurodesis. Both of these surgical options are risky and have major potential side effects. These surgeries are definitely not ideal, but they are the options available to us right now. We're frustrated that we have to wait until Monday to know whether or not we can even do the ct, but we are trying to be patient. Basically, if she has lymphangectasia she will not survive. If we don't do surgery she will die since none of the other treatments have worked for her condition (congenital chylothorax), the surgeons have said that the surgical options are risky and she may not even survive surgery, and there is a good chance surgery may not be successful in which case there is nothing else they can do for her. This means that there is a chance she will live, but there is also a good chance she may not survive. This is such heartbraking news for us since we have been soo hopeful from day one that she would live-we just thought she might be in the NICU for a long time. We are still trying to be hopeful (even though we feel hopeless) but we are just trying to rely on the Lord and see things from an eternal perspective. We know that no matter what happens, sweet Whitney came to our family for a reason and there is obviously a lot we are to learn from this experience. For the time being, apparently Heavenly Father needs to teach us (mostly me!) patience and long-suffering.
My sweet sister Angie has just been here taking care of our babies for three days so we could spend lots of time with Whitney. She just left and Kyle doesn't work again until Saturday so we will take some time to spend with the kids since we haven't seen them much since Saturday and we will take turns being at the hospital.
My dear friend, Tiffany Jack, met us at the hospital on Sunday morning and took some beautiful photos for us. She was literally an answer to my prayers a few weeks back. I was really struggling a few weeks ago and I thought to myself that it might be a good idea to get a photographer to come take some photos of us at the hospital. Then I put that thought on the back burner because I didn't want to add one more thing 'to do' or to worry about to my plate, so I figured we wouldn't be able to do that right away because I didn't want to stress about it. That very same day, I received a message on facebook and it was my friend asking if we might want her to come to the hospital to take photos. I couldn't believe the timing since I had just been thinking about it a couple hours earlier. It actually made me cry because I knew how great a photographer Tiffany is and I was soo grateful that she received that inspiration and desire to help us out. Well, I messaged her back and said we would love to, but maybe next week when Whitney was more stable and we could hold her, etc...Well, the next week came and Whitty was worse, so it didn't happen. Last Friday evening, we were told by the docs to realistically prepare for the fact that Whit might not make it. After four weeks of really high hopes (expecting her to live-it was only a matter of time until we can bring her home) to being told she may not make it, we were DEVASTATED. I messaged Tiff that night and told her we would love her to take pics, and soon. We set it up for Sunday morning. It was hard and emotional (for us and Tiff!) but we were soo relieved we were able to take these photos. She did a beautiful job and was soo thorough and such a thoughtful, kind photographer. I would HIGHLY recommend her to anyone because she is truly talented. Anyway, she just posted some of our photos to her blog. Here is the link if you want to check them out: http://www.whenskiesaregreyblog.com/2012/06/baby-whitney.html
We are still hopeful for my sweet baby girl. How can you not be after seeing these beautiful photos of her? She is a beautiful baby who should NOT be sick! We are hoping for the best, but still preparing for the worst. The docs are still giving us some options and some hope but they really are trying to prepare us for the worst as well, which is not an easy thing for them or for us. It's such a hard, sad thing to think about-the thought of losing a child and I cannot comprehend the pain that parents must feel going through this. We are in soo much pain at just the thought of what may lay ahead. We have some fellow NICU friends with a little baby boy names Edward who came prematurely at 28 weeks (he was born 4 days after Whitney and currently only weighs barely 3 lbs). We talk to them about every other day and we each find out how our babies are doing. Well, I found out last night that they actually lost their first baby in addition to having their second child in the NICU. their first son was born with the cord around his neck and only lived four hours. After speaking with them, it seems like a miracle that any of us have healthy children, with all that could potentially go wrong.
Anyway, please continue to keep us and Whitney (and even Baby Edward and his sweet parents) in your prayers-we could definitely use them! Whitney is truly an angel and has already taught us soo much in her short 37 days of life. We have been taught, led and inspired through this whole process and are definitely feeling the comfort and love of our Heavenly Father more now than ever before. We are soo blessed and are soo lucky to have the friends, family and ward family that we do. Thank you all, and I will try to update more often as we know more. It was too hard with all that has happened in the last couple weeks, but I will try to be better!
Love you all!
Sam
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