We've been home since Monday afternoon which has been FABULOUS. As nice as the staff at Vandy Children's is, it is AWESOME not to have people coming in every few hours to mess with Aida or ask questions or whatever. We went back to the clinic to see the hematologist and get labwork on Tuesday which will be the routine for a little while, we think. It will probably be twice a week for now to keep an eye on the platelet and fibrinogen levels. So far, so good. The last transfusion (for fibrinogen) was last Wednesday which is WONDERFUL. She had been getting them every 2-3 days, so going for more than a week is encouraging! We went in today for labwork today and an MRI and are scheduled again on Tuesday for labs and MRI results. Praying the new medicine is already having an effect in shrinking the hemangiomas.
Meanwhile, we went to the pediatrician for all the normal stuff (oh, yeah! forgot about that!) on Wednesday and will revisit again next week. The office is part of Vanderbilt Health, so our hematologist was able to recommend someone she actually knows and has worked with before. They all have access to the same info at their fingertips as well which is really fantastic. We're not exactly on a schedule yet, so I'm generally exhausted. :) Aida still occasionally acts like a preemie/newborn then remembers how to be a big girl like it's no big deal. :) Speaking of...it's time for her to eat, so I'd better go! Love to all!
Friday, March 23, 2012
Sunday, March 18, 2012
Aida - eats like a machine - Lee
No surprise, I'm not the best with updates (or photos as you can see), but it's been a slowish week, but I guess no news is good news. :) Still, here are the basics for this week...
*Aida started a beta blocker that was discovered in recent years to be successful in shrinking infantile hemangiomas, so we are all hopeful. In the meantime, they are stepping down the steroids. Please still be praying for these to shrink. We're expecting her to have another MRI on Friday to check in.
*There is talk of going home next week! We still have a hurdle or two before we're cleared to leave, but because we live so close and can return to the clinic (probably 2x a week or so), we will be out of here sooner than we might otherwise. I definitely don't want to leave before things are completely stable, so as exciting as home is, I am waiting patiently. Seriously. And I imagine we'll need a few prayers for that transition as well. :)
*No more wires! For various reasons, Aida has continued to have heart/breathing/other stuff monitors...until tonight! Woohoo! I feel like I have a baby doll. :) Once we moved into our "real room" the monitors seemed ridiculous anyway since they beepd ALL THE TIME because the sensors are not really made for babies. After an initially stressful night and day, we got a remote set up so there were no alarms in the room. But tonight, they took her off all of them - finally!
*Mark's parents arrived Thursday night/Friday morning, so we're trying to be sure they get their fill of Aida time. :) They'll be here through mid next week though, so if we end up going home they may get more time than they expected!
I'm sure I'm forgetting things, but I think this should cover most of it. If not, Mom can remind me. :) Going home seems very exciting, and it feels like we are getting to a place where things will be "manageable", but we could still very much use a miracle - and your prayers in general for all the adjustments and unknowns to come.
Love to you all!
*Aida started a beta blocker that was discovered in recent years to be successful in shrinking infantile hemangiomas, so we are all hopeful. In the meantime, they are stepping down the steroids. Please still be praying for these to shrink. We're expecting her to have another MRI on Friday to check in.
*There is talk of going home next week! We still have a hurdle or two before we're cleared to leave, but because we live so close and can return to the clinic (probably 2x a week or so), we will be out of here sooner than we might otherwise. I definitely don't want to leave before things are completely stable, so as exciting as home is, I am waiting patiently. Seriously. And I imagine we'll need a few prayers for that transition as well. :)
*No more wires! For various reasons, Aida has continued to have heart/breathing/other stuff monitors...until tonight! Woohoo! I feel like I have a baby doll. :) Once we moved into our "real room" the monitors seemed ridiculous anyway since they beepd ALL THE TIME because the sensors are not really made for babies. After an initially stressful night and day, we got a remote set up so there were no alarms in the room. But tonight, they took her off all of them - finally!
*Mark's parents arrived Thursday night/Friday morning, so we're trying to be sure they get their fill of Aida time. :) They'll be here through mid next week though, so if we end up going home they may get more time than they expected!
I'm sure I'm forgetting things, but I think this should cover most of it. If not, Mom can remind me. :) Going home seems very exciting, and it feels like we are getting to a place where things will be "manageable", but we could still very much use a miracle - and your prayers in general for all the adjustments and unknowns to come.
Love to you all!
Monday, March 12, 2012
Aida's Good News For Monday
We've finally heard back about the MRI, and the news is very encouraging! The hemangiomas on the brain have not grown and currently there is not concern about pressure on the brain. The largest hemangioma (on the liver) is, in fact, SMALLER. We don't know details about how much, but it's very good news regardless. They haven't really discussed any of the others (lots of various sizes inside and outside), but they are of less concern because they shouldn't be causing any real damage anyway...just doing what they do.
In other good news, she seems to be over the premie concerns (namely jaundice and eating). She had spent a few days under the lights (for jaundice) last week, but has been off since Saturday morning. The numbers on that are pretty good and continue to improve...helped by her being a little piglet. :) She's still eating like a champ, starting to gain weight, and Mark is proud of the progressively heftier diapers...which he is changing like a pro. :) All this means they will be moving us OUT of the NICU and into a regular room as soon as one is available! In hospital time, that means today or tomorrow most likely, but we're thrilled regardless.
Thanks again (and some more) for the prayers and on and on. Please pray for continued improvement for Aida, rest/patience/peace for all of us and for me as Mom goes home on Wednesday! :( She will have been here 2 weeks, so it should be a bit of an adjustment! David and Terri will be coming in effectively Friday to take on their shift helping to keep it all rolling.
In other good news, she seems to be over the premie concerns (namely jaundice and eating). She had spent a few days under the lights (for jaundice) last week, but has been off since Saturday morning. The numbers on that are pretty good and continue to improve...helped by her being a little piglet. :) She's still eating like a champ, starting to gain weight, and Mark is proud of the progressively heftier diapers...which he is changing like a pro. :) All this means they will be moving us OUT of the NICU and into a regular room as soon as one is available! In hospital time, that means today or tomorrow most likely, but we're thrilled regardless.
Thanks again (and some more) for the prayers and on and on. Please pray for continued improvement for Aida, rest/patience/peace for all of us and for me as Mom goes home on Wednesday! :( She will have been here 2 weeks, so it should be a bit of an adjustment! David and Terri will be coming in effectively Friday to take on their shift helping to keep it all rolling.
Friday, March 9, 2012
Aida Update
We hear every day that Aida's is an "unusual" case - even for Vanderbilt. ;) Here are the basics as of Friday afternoon...Biopsy has been sent for second "stain" to triple check result, though it appears to be as we all expect. The lesions are infantile hemangiomas and are not malignant. Her platelet levels are maintaining, fibrinogen (other blood factor of concern being affected by hemangioma on the liver) is behaving the same as it has - dropping and being supplemented by fairly regular transfusions of cryo-somthing or other. There is not yet great concern about this as the hemangioma is doing what hemangiomas do. Still praying that these - especially this one and the one brain do not grow which would cause greater concern.She's eating like a CHAMP and thrilling the grandparents...and the nurses too, I think. :) Still jaundice but improving (all the eating helps). MRI is scheduled for tonight, but we don't expect to hear results until early next week. PICC (long term central line to draw blood and give transfusions) put in her leg today so no more sticking her all over!
We're expecting to meet with the team of doctors mid-next week or so after ALL the results are gathered to discuss a plan. We hope to know more about how long we will be here (or at least the NICU), but that may be hard to say.
PLEASE BE PRAYING:Several of the hemangiomas that are visible are growing. They do typically get larger before shrinking, but the ones on the liver and brain are already large and obviously could cause other real damage.There are many ups and downs EVERY DAY - most hours. Mark is working all day, and I'm still recovering while doing the new mommy things that are helping to make her better. It is a lot.
Thank your continued prayers and encouraging notes and all the other support we are receiving. Love you all!
We're expecting to meet with the team of doctors mid-next week or so after ALL the results are gathered to discuss a plan. We hope to know more about how long we will be here (or at least the NICU), but that may be hard to say.
PLEASE BE PRAYING:Several of the hemangiomas that are visible are growing. They do typically get larger before shrinking, but the ones on the liver and brain are already large and obviously could cause other real damage.There are many ups and downs EVERY DAY - most hours. Mark is working all day, and I'm still recovering while doing the new mommy things that are helping to make her better. It is a lot.
Thank your continued prayers and encouraging notes and all the other support we are receiving. Love you all!
Wednesday, March 7, 2012
Aida Lee!
About a month ago, our OB told us Aida would be a “big” baby and that at the time (31 weeks), she was breach, though he wasn’t terribly alarmed by either at this point. At the next visit – 2 weeks later – again, she was breach and definitely “big.” He scheduled an ultrasound to evaluate size at our next visit (this past Wednesday, 2/29). The ultrasound confirmed that she was, in fact, big for her “age” and that she was still breach. More importantly though, they discovered what the doctor believed to be a tumor on her brain as well as a dilated bowel. We were promptly sent to Baptist Hospital for another ultrasound and a meeting with a specialist. This ultrasound confirmed the swollen bowel and that there was a mass of some sort on her brain, but they really didn’t know much more than that. After about 7 hours at the doctor’s office and then the hospital, we were sent home with the expectation that I would have an appointment scheduled at Vanderbilt specialists the next day. Ultimately, we could expect a C-section at some point and most likely surgery for Aida immediately after, but it may be days or weeks before we get to that. The doctor said that the bowel issue may or may not indicate a chromosomal problem (most likely Downs Syndrome), and we wouldn’t know much about the brain until after she was born and they could scan her directly. A bit of good news was that the mass didn’t seem to be tangled up with blood vessels or buried in the brain. Rather, it was sort of on the surface.
We had called our families, but were generally in shock. By the end of the night, my parents were packed and preparing to come the following day even though we had no idea when anything would be happening – not even the appointments at Vandy had been scheduled. Mark & I both took something to help us get some rest after a stressful day and before what we expected to be another long day. About 4 hours after going to bed (3am), my water broke. We drove to Vandy (not where we had planned to deliver), and it took some time to explain why we were there (instead of Baptist) and why I was expecting a C-section and so on. I was given an epidural/spinal at about 7:30a and was rolled into the OR around 8:30a. She was born at 9:09a. As expected, she was big. She was just under 7.5lbs and was 19.5” long…at 4.5 weeks early. Mark was given a chance to take a few pictures, and I saw her for a few seconds (sort of) before she was carried off. All we were told was that she was beautiful and pink. We went off to recovery, and Aida went for tests. My parents arrived around 2, but we weren’t moved to a real room until 7 or so that night (Thursday) as they were overloaded with patients.
Everything after the surgery is a bit of a blur as far as sequence and timing, but I’ll do my best. We had expected her to be taken to surgery, but fortunately, that was not the case. At some point, we were told that that in addition to the brain, there was a large mass on her liver and smaller ones all over her body (inside and out). They are “tumors” technically, I think, but sort of like collections of blood – a “vascular malformation.” These lesions are basically fed by Aida’s blood supply, so her numbers were a bit low. I was called while in recovery on Thursday afternoon to give consent for a blood transfusion. As it turned out, they would give her a transfusion of platelets and another of some protein that helps clot the blood. The bowel problem turned out to be not such a big deal and was resolved with decompression (or something), which was a great relief.
Over the next couple of days, my life was dictated by my recovery, but Mark was able to spend lots of time with Aida in the NICU. I didn’t get to see her until Friday afternoon, and then only for a few minutes. My brothers drove in after a show Thursday night and spent the day with us (Aida too) at the hospital before flying to their next show on Friday…just barely making it with the tornado threats that afternoon. My sister-in-law Mary Reames (a NICU nurse herself) came on Friday as well and was a phenomenal set of extra hands and support – and occasionally my brain/voice – until Sunday. Bo’s wife Lindsey couldn’t travel as she is about 30 weeks pregnant herself. J Mark’s parents are in Nicaragua but will be coming in the next week or so to meet their grandbaby (and take their shift) after my mom has gone home. Mark has been in regular contact with his side of the family and a handful of friends/point people. I have not yet spoken on the phone to anyone, so please don’t be offended if you haven’t heard from me in some way.
We’ve learned that these hemagiomas typically grow before they shrink but usually go away on their own (6 mos to a year - possibly more?). Unfortunately, the one on her liver is quite large, so she can’t afford for it to grow very much. For now, she is being given steroids to combat growth and hopefully even cause shrinking. She is responding well as far as we can tell since she has only required one transfusion of protein since Friday. If the steroids are not sufficient, there are other drug options to take and ultimately surgeries. We’re believing it won’t get that far! She had a small punch biopsy on one of the hemagiomas on her leg on Monday to determine its type, which will help them know how best to treat. There will be another MRI on Friday (results may not come until Monday) to determine the direction of treatment.
Despite her deceptive size, she is still a premie. They’ve reduced her fluids and have allowed her to eat in the last day or so, but we don’t know yet if her little body is ready for all of that. There is the possibility of a feeding tube – apparently very common with premies. She also has two small holes in her heart, but again, we understand this to be common with premies. None of her doctors seem to be very concerned at this point as it is likely this will resolve itself on it’s own.
For now, our biggest struggle is finding a routine that works. She is still in the NICU, so there is no place for any of us to stay. There are rooms at the hospital we can use, but availability is determined daily. (You literally have to be out at 9 and don’t know until 4:30 if you’ll have a room again that night. Priority is given to out of towners.) Mark went back to work on Monday, and I have spent the last two nights at home trying to get good rest for what are surprisingly full/busy days.
We have intentionally boycotted all Googling to avoid any unnecessary freaking out or misinformation. I’m sure many of you have already looked up the few specifics I’ve included, but we trust you’ll keep any resulting thoughts or theories to yourselves. J We are thrilled to be so close to a place like Vanderbilt and trust what we know are fantastic doctors to give Aida the best care possible. Overall, we are all doing well. I’m feeling better physically every day, and I know the innumerable prayers of friends, family and strangers are contributing to the peace that passes all understanding that we have been living in. We’ve certainly had our moments, but for now, our spirits are very good, and we are trusting God for continued improvements.
Thanks to everyone who has been praying and offering all kinds of support. We love you all and will try to keep you informed with major updates.
We had called our families, but were generally in shock. By the end of the night, my parents were packed and preparing to come the following day even though we had no idea when anything would be happening – not even the appointments at Vandy had been scheduled. Mark & I both took something to help us get some rest after a stressful day and before what we expected to be another long day. About 4 hours after going to bed (3am), my water broke. We drove to Vandy (not where we had planned to deliver), and it took some time to explain why we were there (instead of Baptist) and why I was expecting a C-section and so on. I was given an epidural/spinal at about 7:30a and was rolled into the OR around 8:30a. She was born at 9:09a. As expected, she was big. She was just under 7.5lbs and was 19.5” long…at 4.5 weeks early. Mark was given a chance to take a few pictures, and I saw her for a few seconds (sort of) before she was carried off. All we were told was that she was beautiful and pink. We went off to recovery, and Aida went for tests. My parents arrived around 2, but we weren’t moved to a real room until 7 or so that night (Thursday) as they were overloaded with patients.
Everything after the surgery is a bit of a blur as far as sequence and timing, but I’ll do my best. We had expected her to be taken to surgery, but fortunately, that was not the case. At some point, we were told that that in addition to the brain, there was a large mass on her liver and smaller ones all over her body (inside and out). They are “tumors” technically, I think, but sort of like collections of blood – a “vascular malformation.” These lesions are basically fed by Aida’s blood supply, so her numbers were a bit low. I was called while in recovery on Thursday afternoon to give consent for a blood transfusion. As it turned out, they would give her a transfusion of platelets and another of some protein that helps clot the blood. The bowel problem turned out to be not such a big deal and was resolved with decompression (or something), which was a great relief.
Over the next couple of days, my life was dictated by my recovery, but Mark was able to spend lots of time with Aida in the NICU. I didn’t get to see her until Friday afternoon, and then only for a few minutes. My brothers drove in after a show Thursday night and spent the day with us (Aida too) at the hospital before flying to their next show on Friday…just barely making it with the tornado threats that afternoon. My sister-in-law Mary Reames (a NICU nurse herself) came on Friday as well and was a phenomenal set of extra hands and support – and occasionally my brain/voice – until Sunday. Bo’s wife Lindsey couldn’t travel as she is about 30 weeks pregnant herself. J Mark’s parents are in Nicaragua but will be coming in the next week or so to meet their grandbaby (and take their shift) after my mom has gone home. Mark has been in regular contact with his side of the family and a handful of friends/point people. I have not yet spoken on the phone to anyone, so please don’t be offended if you haven’t heard from me in some way.
We’ve learned that these hemagiomas typically grow before they shrink but usually go away on their own (6 mos to a year - possibly more?). Unfortunately, the one on her liver is quite large, so she can’t afford for it to grow very much. For now, she is being given steroids to combat growth and hopefully even cause shrinking. She is responding well as far as we can tell since she has only required one transfusion of protein since Friday. If the steroids are not sufficient, there are other drug options to take and ultimately surgeries. We’re believing it won’t get that far! She had a small punch biopsy on one of the hemagiomas on her leg on Monday to determine its type, which will help them know how best to treat. There will be another MRI on Friday (results may not come until Monday) to determine the direction of treatment.
Despite her deceptive size, she is still a premie. They’ve reduced her fluids and have allowed her to eat in the last day or so, but we don’t know yet if her little body is ready for all of that. There is the possibility of a feeding tube – apparently very common with premies. She also has two small holes in her heart, but again, we understand this to be common with premies. None of her doctors seem to be very concerned at this point as it is likely this will resolve itself on it’s own.
For now, our biggest struggle is finding a routine that works. She is still in the NICU, so there is no place for any of us to stay. There are rooms at the hospital we can use, but availability is determined daily. (You literally have to be out at 9 and don’t know until 4:30 if you’ll have a room again that night. Priority is given to out of towners.) Mark went back to work on Monday, and I have spent the last two nights at home trying to get good rest for what are surprisingly full/busy days.
We have intentionally boycotted all Googling to avoid any unnecessary freaking out or misinformation. I’m sure many of you have already looked up the few specifics I’ve included, but we trust you’ll keep any resulting thoughts or theories to yourselves. J We are thrilled to be so close to a place like Vanderbilt and trust what we know are fantastic doctors to give Aida the best care possible. Overall, we are all doing well. I’m feeling better physically every day, and I know the innumerable prayers of friends, family and strangers are contributing to the peace that passes all understanding that we have been living in. We’ve certainly had our moments, but for now, our spirits are very good, and we are trusting God for continued improvements.
Thanks to everyone who has been praying and offering all kinds of support. We love you all and will try to keep you informed with major updates.
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