They said Mira did great! They were able to close her back, and they didn't have to take a graft from anywhere else on her. Thank goodness! They did not put her shunt in today, they put a temporary drain in to give her one last chance of clearing out her ventricles on her own, but they're 95+% sure she's going to need a shunt, so they're scheduling that operation for Tuesday. I guess Mira will still be intubated for another three to four hours because its going to take her a while to come out of the grogginess of anesthesia. While she's coming out of it, her breathing will be really off, so she can't be extubated until the anesthesia wares off.
She can't have anything putting pressure on her back for the next six weeks. No laying her on her back, no regular car seat, no holding her the way you would typically hold a baby, no clothes that would press on that area, etc.
We also won't know anything about her leg function or what the surgery may have helped or hurt for a little while. It's not as easy as testing her function whenever she wakes up because the nerves and tissue in her spine will be swollen and freshly manipulated from the surgery. This often causes function to be deceiving. For instance, she could have no leg function when she wakes up, but in a week when the swelling of the nerves go back down, she could be at 100%! There's just no way to know a lot of things right now, but we do know that her first surgery went great, and she's off the operating table, and she's on her way back to Joe right now to recover with her daddy because everything went fantastic today! That's all we know, and I am perfectly okay with that right now! Thank God! Thank you all for your prayers! Thank you, thank you, thank you!!!
Thursday, April 18, 2013
Mira's Surgery
Mira's surgery started at 3 o'clock. I have a direct line to the nurse that is receiving updates, so I am to call her at 4:30 to see if she has any updates to give me. The surgeons are definitely operating on her back, but were still deciding as to whether they were going to put in a temporary drainage tube in her head for the hydrocephalus, or if they are going to actually do the shunt operation, as well, at the same time that her back is being operated on.
I'm trying to keep distracted because freaking out isn't going to do any good while she's in the operating room. Instead, I'm going to keep trying to pump so that she will have food for when she recovers from surgery! I love you all, and I'll post more updates as soon as I know something!
Here's a picture Joe sent me of Mira being taken to surgery!
I'm trying to keep distracted because freaking out isn't going to do any good while she's in the operating room. Instead, I'm going to keep trying to pump so that she will have food for when she recovers from surgery! I love you all, and I'll post more updates as soon as I know something!
Here's a picture Joe sent me of Mira being taken to surgery!
Spinal Cord & Colostrum
I updated this information on Facebook, but I'll share it here as well. When I called over to children's hospital this morning to receive an update about Mira and ask questions, the nurse informed me that the reason her surgery was pushed up to today is because, not only is the membrane covering her tissue really fragile and unusable, but it actually ruptured in one spot, and through that rupture, the spinal cord is out and exposed. This is exactly what we didn't want to have happen. But hopefully, by them moving up the surgery, we can avoid an infection and/or any more damage being done to the exposed cord, which are our two big concerns right this second. She still hasn't eaten anything, and she won't be allowed to eat until at least 24 hours after her surgery, so I'm trying to prepare a milk supply for her.
After all night of pumping, I've got just an ounce of colostrum. For those who don't know, colostrum is the type of milk that comes out of your breasts directly after having a baby. It is designed to clear out their system from months of being in the womb, and it prepares their little gut to start digesting properly. Colostrum is much thicker than regular milk, which is why it's so difficult to get out of the breasts, but within a couple days, regular breast milk will start to take its place, and then things get much easier from there! I'm just gonna keep on working on it! I've never had to pump in the hospital before. I've always fed my children directly from the breast, so I never realized how difficult it was to stimulate milk production and get the colostrum out with a pump! But, regardless of how difficult (and at times, painful) it may be, it'll be so worth it when she can finally eat!
After all night of pumping, I've got just an ounce of colostrum. For those who don't know, colostrum is the type of milk that comes out of your breasts directly after having a baby. It is designed to clear out their system from months of being in the womb, and it prepares their little gut to start digesting properly. Colostrum is much thicker than regular milk, which is why it's so difficult to get out of the breasts, but within a couple days, regular breast milk will start to take its place, and then things get much easier from there! I'm just gonna keep on working on it! I've never had to pump in the hospital before. I've always fed my children directly from the breast, so I never realized how difficult it was to stimulate milk production and get the colostrum out with a pump! But, regardless of how difficult (and at times, painful) it may be, it'll be so worth it when she can finally eat!
Happy Birthday! ~Mira Cole McGuirk~ 8 lbs. 4 oz. 20 inches long! 4/17/2013 @ 3:58pm
The run down of Mira is that she's absolutely stunningly beautiful! She reminds me of Dustin and Aryanna, but her cry is unique to herself. Its a dainty, lady-like cry, but still gets the point across with those healthy lungs if hers, that doesn't remind me of Dustin's or Aryanna's cries. She has gorgeous darker, but not black, hair, chubby features, and a perfectly beautiful baby complexion! Her perfect dark baby eyes are the same shape Aryanna's were, and her perfect little button nose is definitely that of a Dustin look alike!
Now, down to the medical side of it. The gap in her spine is unfortunately much higher than we thought. We had anticipated on it being right above/starting at the top of her little butt crack. However, if you look at her back and find the bottom of the back of her ribs, her defect starts just below that level on her spine. This is unfortunate because wherever the open neural tube occurs, from that point and below, nerve damage is done. So the lower down the defect, the better the prognosis, and the location of the defect is much higher than we thought it was.
Her left foot is a club foot, which we already knew, but the degree of it is more severe than what sonograms had shown. The way/direction in which it curves is not as simple as we had thought, and the neurosurgeon informed Joe that we will need to take frequent and extraordinary measures to try and correct it when the time comes. It seems we are definitely looking at multiple surgeries, starting at an unknown time, because it no longer seems realistic to think her foot can be gradually corrected with different sets of braces and casts.
With her left leg having the club foot, you would think that would be the bad leg, however opposite seems to be true. Even with the clubbed foot she was still moving her left foot, left toes, bending her left knee, and rotating/picking up her entire left leg. Her right leg is not as functional. While her right foot is perfectly healthy, and I saw her wiggling her right toes, she is not doing much with her right leg in whole. As I watched her transport team move her around through videos, when she is picked up, she compensates for the movement with her left leg, but allows her right leg to dangle as is. I have not seen her bend her right knee or move the leg substantially from the hip. So, while we thought her left leg was going to be the problem, we are mistaken for the time being.
We also originally thought her myelomeningocele was "closed" meaning the spinal cord and meninges are completely covered and protected by skin, and that skin can be used to healthily close the defect during surgery. However, Mira's turned out not to be closed in a way. The cord and meninges are not just hanging out of her back, so no leaking is occurring, BUT, the membrane covering the defect is just that, a very small, weak, unusable membrane that isn't really classified as skin, and does not protect the tissue beneath it like skin would. This causes the already high risk of infection to go way up, so they are now moving her surgery to this morning, Thursday, instead of Friday morning. There is now NO way I'll get to be there, but there was little chance before, as well. I just hope the sac stays closed, no leaking occurs, and infection does not take place. I am also curious because in order to close her back, they need to leave extra skin over the area of her incision so that as she grows, and it heals, the extra skin can stretch and heal properly instead of tugging and pulling. With the membrane covering her defect being so weak and unusable, I have no idea where they are getting the extra skin to close her back properly that will compensate and allow for healing without tugging complications to the incision. So I guess that's another thing I will find out tomorrow, hopefully!
Her hydrocephalus is progressing rapidly, so the surgeons are unsure as to how they are going to compensate for that. They had originally planned on putting a temporary drainage tube in her head, operating on her back, and then a few days later going back in and operating to put in her shunt. Now they are debating on whether or not the shunt is more urgent than that because of the severity of it, which they were able to find out about more in depth today during pre-op testing, so they may place the shunt while they are operating on her back at the same time. I guess I will find out what they decide tomorrow.
Her arms certainly are strong, though! Ive been able to observe her through the videos Tammy took on her phone while I was in recovery, before Mira was taken to Children's, because as mentioned before, I've only seen her in person for a total of a minute and a half. She is already doing a fantastic job at grabbing things. They have a little blue board attached to her arm and hand to keep her from damaging her injection sight, and she was waving that thing all around! Grabbing ahold of it with her other hand, and back and forth. She lifts the whole contraption right up, lifts her arm up in the air, and ends up looking like she's talking on a blue telephone (which also reminds me of Aryanna). She was moving her head quite a bit to try and guide her pacifier back into her mouth, using the blue board to her advantage like a paddle (so she's smart too) and I wonder if, like our other children, she would be able to pick her head up on her own during her first day of life or not. But I didn't get to see her held or lifted upright at all, so I won't get to know that for sure. She certainly looks strong enough for it in that area of her body, though!
So, many aspects of her defects were not what we hoped, and ending up being more severe than we had anticipated. However, nothing is really final at this point, and all we are looking at is a very long road of uncertainty and possibilities to maybe make things better. So we'll take this one step at a time, starting with her surgery or surgeries tomorrow! So I believe that I covered everything new that I know about Mira and her health, and I will continue to keep everyone as posted as possible! We love you all, and the prayers, birthday wishes, and even just your kind thoughts are very heart warming! Much love to all of you and thank you again! Happy birthday, Mira! I couldn't be more thrilled to share this day with you for the rest of our lives! Mommy loves you and misses you so much!
Now, down to the medical side of it. The gap in her spine is unfortunately much higher than we thought. We had anticipated on it being right above/starting at the top of her little butt crack. However, if you look at her back and find the bottom of the back of her ribs, her defect starts just below that level on her spine. This is unfortunate because wherever the open neural tube occurs, from that point and below, nerve damage is done. So the lower down the defect, the better the prognosis, and the location of the defect is much higher than we thought it was.
Her left foot is a club foot, which we already knew, but the degree of it is more severe than what sonograms had shown. The way/direction in which it curves is not as simple as we had thought, and the neurosurgeon informed Joe that we will need to take frequent and extraordinary measures to try and correct it when the time comes. It seems we are definitely looking at multiple surgeries, starting at an unknown time, because it no longer seems realistic to think her foot can be gradually corrected with different sets of braces and casts.
With her left leg having the club foot, you would think that would be the bad leg, however opposite seems to be true. Even with the clubbed foot she was still moving her left foot, left toes, bending her left knee, and rotating/picking up her entire left leg. Her right leg is not as functional. While her right foot is perfectly healthy, and I saw her wiggling her right toes, she is not doing much with her right leg in whole. As I watched her transport team move her around through videos, when she is picked up, she compensates for the movement with her left leg, but allows her right leg to dangle as is. I have not seen her bend her right knee or move the leg substantially from the hip. So, while we thought her left leg was going to be the problem, we are mistaken for the time being.
We also originally thought her myelomeningocele was "closed" meaning the spinal cord and meninges are completely covered and protected by skin, and that skin can be used to healthily close the defect during surgery. However, Mira's turned out not to be closed in a way. The cord and meninges are not just hanging out of her back, so no leaking is occurring, BUT, the membrane covering the defect is just that, a very small, weak, unusable membrane that isn't really classified as skin, and does not protect the tissue beneath it like skin would. This causes the already high risk of infection to go way up, so they are now moving her surgery to this morning, Thursday, instead of Friday morning. There is now NO way I'll get to be there, but there was little chance before, as well. I just hope the sac stays closed, no leaking occurs, and infection does not take place. I am also curious because in order to close her back, they need to leave extra skin over the area of her incision so that as she grows, and it heals, the extra skin can stretch and heal properly instead of tugging and pulling. With the membrane covering her defect being so weak and unusable, I have no idea where they are getting the extra skin to close her back properly that will compensate and allow for healing without tugging complications to the incision. So I guess that's another thing I will find out tomorrow, hopefully!
Her hydrocephalus is progressing rapidly, so the surgeons are unsure as to how they are going to compensate for that. They had originally planned on putting a temporary drainage tube in her head, operating on her back, and then a few days later going back in and operating to put in her shunt. Now they are debating on whether or not the shunt is more urgent than that because of the severity of it, which they were able to find out about more in depth today during pre-op testing, so they may place the shunt while they are operating on her back at the same time. I guess I will find out what they decide tomorrow.
Her arms certainly are strong, though! Ive been able to observe her through the videos Tammy took on her phone while I was in recovery, before Mira was taken to Children's, because as mentioned before, I've only seen her in person for a total of a minute and a half. She is already doing a fantastic job at grabbing things. They have a little blue board attached to her arm and hand to keep her from damaging her injection sight, and she was waving that thing all around! Grabbing ahold of it with her other hand, and back and forth. She lifts the whole contraption right up, lifts her arm up in the air, and ends up looking like she's talking on a blue telephone (which also reminds me of Aryanna). She was moving her head quite a bit to try and guide her pacifier back into her mouth, using the blue board to her advantage like a paddle (so she's smart too) and I wonder if, like our other children, she would be able to pick her head up on her own during her first day of life or not. But I didn't get to see her held or lifted upright at all, so I won't get to know that for sure. She certainly looks strong enough for it in that area of her body, though!
So, many aspects of her defects were not what we hoped, and ending up being more severe than we had anticipated. However, nothing is really final at this point, and all we are looking at is a very long road of uncertainty and possibilities to maybe make things better. So we'll take this one step at a time, starting with her surgery or surgeries tomorrow! So I believe that I covered everything new that I know about Mira and her health, and I will continue to keep everyone as posted as possible! We love you all, and the prayers, birthday wishes, and even just your kind thoughts are very heart warming! Much love to all of you and thank you again! Happy birthday, Mira! I couldn't be more thrilled to share this day with you for the rest of our lives! Mommy loves you and misses you so much!
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