Wednesday, January 22, 2014
Update 1/22/14
All of her tests were normal, so Isabel has started to get some food back in her belly very slowly. So we shall see how she does. It will take about two weeks to get up to her total amount by making very small increases each day.
Monday, January 20, 2014
Update 1/20/14
Isabel is still on all IV fluids and nutrition. We have yet to start putting any food in her belly because the docs wanted to do one more test, a dye contrast study of her small intestines, beforehand. They started that test this morning, and she will continue to have x-rays throughout the day and then we should be good to go.
Otherwise, she looked so good last week and over the weekend. She was one happy, comfortable baby and FULL of smiles. We even went for a stroller ride yesterday all around the unit. It was only her second time out of her room. She got lots of attention. Her respiratory therapist even played a "theme song" on her cell phone as we were walking around: "Paparazzi" by Lady Gaga. ;)
Otherwise, she looked so good last week and over the weekend. She was one happy, comfortable baby and FULL of smiles. We even went for a stroller ride yesterday all around the unit. It was only her second time out of her room. She got lots of attention. Her respiratory therapist even played a "theme song" on her cell phone as we were walking around: "Paparazzi" by Lady Gaga. ;)
Wednesday, January 15, 2014
Feelings
This may sound strange, but Dan and I are doing alright. We wrote that last post together. We want to be on the same page with everything and remain strong together. Of course, this is extremely hard, sad, and heartbreaking, and we have been having a lot of good conversations about life, love, and our little lady. We know that no matter what happens, we will all be OK. Either scenario will be harder than we can possibly imagine, but also OK. We truly do want what is best for Isabel. She has battled infections, surgeries, procedures and issue after issue. She has been so strong, and if she still has it in her to keep on fighting, we'll be with her all the way, and if not, she will be free. She'll be free of all of the tubes and medications, and free of all of the pain and struggle and illness in her body that was never supposed to be. We're holding onto her, open-handedly, and focusing on the gift that the last 6 months has been. We have gotten to know our little girl. We have seen her smile and play. For a long time, we never thought we would.
We have been operating "one day at a time" for months. It has been exhausting.We are now about to make moves forward and it feels good. Some day soon we will be going home as a family, and Isabel will get to meet her puppy brother. It may not be on our terms, but it will happen. We are so scared. We're scared to lose her and face life without her, and scared for how challenging her long-term care might be. In the end, we are not in control, and we place all of our lives in the hands of God. When I was pregnant, a verse kind of found me and stuck with me. "Before I formed you in the womb I knew you, before you were born I set you apart..." (Jeremiah 1:5) It is Isabel's verse. It's on the wall in her room at home, and I think about it a lot. She has always been, as we all are, a child of God. While she is here on earth we get to be her parents, and whenever she leaves us she'll be well taken care of. We love you so much, Isabel Ann.
On a separate note, thank you. Thank you, thank you, thank you to all of you who read this blog and Facebook and share your support. It gives us a way to share this experience. Being vulnerable and open about all of this, the good and the bad, has been very healthy for us. It means more than you know to feel that we are not carrying the weight of this alone. Your messages of support have been overwhelming.
We have been operating "one day at a time" for months. It has been exhausting.We are now about to make moves forward and it feels good. Some day soon we will be going home as a family, and Isabel will get to meet her puppy brother. It may not be on our terms, but it will happen. We are so scared. We're scared to lose her and face life without her, and scared for how challenging her long-term care might be. In the end, we are not in control, and we place all of our lives in the hands of God. When I was pregnant, a verse kind of found me and stuck with me. "Before I formed you in the womb I knew you, before you were born I set you apart..." (Jeremiah 1:5) It is Isabel's verse. It's on the wall in her room at home, and I think about it a lot. She has always been, as we all are, a child of God. While she is here on earth we get to be her parents, and whenever she leaves us she'll be well taken care of. We love you so much, Isabel Ann.
On a separate note, thank you. Thank you, thank you, thank you to all of you who read this blog and Facebook and share your support. It gives us a way to share this experience. Being vulnerable and open about all of this, the good and the bad, has been very healthy for us. It means more than you know to feel that we are not carrying the weight of this alone. Your messages of support have been overwhelming.
Monday, January 13, 2014
New Year
It's been a while. Isabel is doing pretty well, but is still in the ICU. We had a good Christmas together. Not quite what we had hoped for since we were in the hospital, but we had a tree set up in her room and spent the night with her on Christmas Eve so that we could be there when Santa came, and see her first thing in the morning. It was great to all be together, and made us that much more anxious to get her home. The rest of Christmas break was filled with lots of family time and a very happy and comfortable Isabel.
However, on New Years Day, things got a bit more complicated. Seemingly out of nowhere, Isabel developed signs and symptoms of an intestinal issue. X-rays confirmed that there were tiny pockets of air throughout the lining of her small intestines. No idea what the exact cause was and we may never know, but possibly due to an infection. The treatment for this is to let her bowels rest (not feed her) and treat with antibiotics for 14 days. Today is day 12. During the first few days of this, she was very uncomfortable and had a very hard time settling down without the help of medication. Since then, the abdominal X-rays have shown that the air is gone, her intestines appear to have healed, and she has been very comfortable, happy, and playful - back to her old self.
Isabel has had many setbacks and complications, but this one sticks out to us and the doctors as being more concerning because she had been doing so well, there was not a clear cause, there is no real "fix" for this, and there was no way to anticipate this kind of thing. Other than an infection, one possible explanation is that her belly may not be getting sufficient circulation and oxygenation, which points back to her heart. Isabel's heart, though repaired, still does not function at 100%. In light of the belly issue, and because it had been a couple of months, she had another echocardiogram. The results were mainly consistent with what we already knew, but also indicated that her heart may be struggling a bit more to pump blood out to her body. This was and is all very hard news to swallow at this point considering all that she has been through and all that she has overcome.
With all of this in mind, we had a couple of meetings with her care teams this past week. Through those meetings we've gained more insight into Isabel's current situation and how it will most likely affect her moving forward. The doctors talked to us about each of her organs that has had trouble during her 6+ months of life and told us best and worst case scenarios for each. The short story is that she has experienced or is experiencing failure (not proper function) in four of her major organs (heart, lungs, kidneys and intestines). Of all of these failures, her potential intestinal failure is the most dangerous/scary. Her heart and kidney disease can be treated with medication, but it is much more difficult if she can't absorb the meds with food through her intestines. Likewise, if her intestines are not able to work properly, then she is not able to take in the amount of nutrition that is required to sustain growth or even the life of her small body. Isabel has shown us time and time again that she is one tough little girl. Not even the doctors can deny that. However, with all of these serious complications, she is not likely to have a long life, but no one can say that for sure. So, we are waiting to see what she can do when we start to feed her again later this week. It all seems very up in the air right now. She has made so much progress, but just doesn't seem to be able to get all the way to where we'd like her or need her to be. We are working on a plan to get her home sooner than later no matter what, so that we can just be home together as a family. It will likely be a least another month before that happens so that we can see just how much food she can digest, and if we can get her back on a stable regimen of oral medications. We love her beyond words and are just praying for whatever is best for her in the long run. We have incredible families and friends and a team of doctors, nurses, therapists, and social workers helping us every step of the way and do not feel in any way alone in all of this.
Thanks for you continued love, support, prayers, and good thoughts,
Dan, Amy & Izzy
However, on New Years Day, things got a bit more complicated. Seemingly out of nowhere, Isabel developed signs and symptoms of an intestinal issue. X-rays confirmed that there were tiny pockets of air throughout the lining of her small intestines. No idea what the exact cause was and we may never know, but possibly due to an infection. The treatment for this is to let her bowels rest (not feed her) and treat with antibiotics for 14 days. Today is day 12. During the first few days of this, she was very uncomfortable and had a very hard time settling down without the help of medication. Since then, the abdominal X-rays have shown that the air is gone, her intestines appear to have healed, and she has been very comfortable, happy, and playful - back to her old self.
Isabel has had many setbacks and complications, but this one sticks out to us and the doctors as being more concerning because she had been doing so well, there was not a clear cause, there is no real "fix" for this, and there was no way to anticipate this kind of thing. Other than an infection, one possible explanation is that her belly may not be getting sufficient circulation and oxygenation, which points back to her heart. Isabel's heart, though repaired, still does not function at 100%. In light of the belly issue, and because it had been a couple of months, she had another echocardiogram. The results were mainly consistent with what we already knew, but also indicated that her heart may be struggling a bit more to pump blood out to her body. This was and is all very hard news to swallow at this point considering all that she has been through and all that she has overcome.
With all of this in mind, we had a couple of meetings with her care teams this past week. Through those meetings we've gained more insight into Isabel's current situation and how it will most likely affect her moving forward. The doctors talked to us about each of her organs that has had trouble during her 6+ months of life and told us best and worst case scenarios for each. The short story is that she has experienced or is experiencing failure (not proper function) in four of her major organs (heart, lungs, kidneys and intestines). Of all of these failures, her potential intestinal failure is the most dangerous/scary. Her heart and kidney disease can be treated with medication, but it is much more difficult if she can't absorb the meds with food through her intestines. Likewise, if her intestines are not able to work properly, then she is not able to take in the amount of nutrition that is required to sustain growth or even the life of her small body. Isabel has shown us time and time again that she is one tough little girl. Not even the doctors can deny that. However, with all of these serious complications, she is not likely to have a long life, but no one can say that for sure. So, we are waiting to see what she can do when we start to feed her again later this week. It all seems very up in the air right now. She has made so much progress, but just doesn't seem to be able to get all the way to where we'd like her or need her to be. We are working on a plan to get her home sooner than later no matter what, so that we can just be home together as a family. It will likely be a least another month before that happens so that we can see just how much food she can digest, and if we can get her back on a stable regimen of oral medications. We love her beyond words and are just praying for whatever is best for her in the long run. We have incredible families and friends and a team of doctors, nurses, therapists, and social workers helping us every step of the way and do not feel in any way alone in all of this.
Thanks for you continued love, support, prayers, and good thoughts,
Dan, Amy & Izzy
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