We received a call from Dr. St. Hilaire himself. He went over the MRI with the radiologist and found that the radiologist was correct! While this is great news by itself, he followed it with even more amazing news. Sophie does NOT need surgery at this time!!
Before I continue, I just want to thank everyone for your prayers and well wishes. We truly believe that this was our miracle. This is the first time I've experienced something so beautiful. We know that we had all of our friends and family behind us and we know that made all the difference. We feel as if we got our lives back. It is truly going to be an amazing holiday season.
The part of her skull that is missing isn't where we thought it was. It is actually part of her left nasal bone that is absent. While the CT scan showed a lesion, there is actually no lesion at all. The lesion that they thought they saw was actually the missing part of her nasal bone. We still have lots of questions that need to be answered. We have a follow-up appt. with Dr. St. Hilaire on Friday, November 30th to see where we go from here. Will Sophie need surgery in the future to correct this? Is this missing bone causing all of her facial assymetry.. Or was some of it caused by the "smushing" as they initially thought? I will continue to update after this appointment!
When we first heard this news, we didn't know how to react. It was almost as if we couldn't believe it because we were given so much information already about her surgery and recovery. We are so thankful to our pediatrician because without him, we would have been waiting until December 7th to find out the results of the MRI. These past few weeks have been very difficult and we are still confused. We don't understand how we can be told something so bad, and after more extensive testing, be told that it's not nearly that bad, but we need to push those feelings aside and be thankful for this beautiful gift that we have been given without questioning it.
Wednesday, November 7, 2012
Saturday, November 3, 2012
MRI results
We received the call we were waiting for! Dr. St. Hilaire's office called last night. The radiologist read the MRI as "normal". Before we breathe a sigh of relief, I was told that Dr. St. Hilaire wants to sit down with the radiologist on Monday or Tuesday to go over the MRI because the CT scan and the MRI showed conflicting results. While the MRI is more accurate most of the time, we still need to wait for final confirmation after Dr. St. Hilaire calls us back.
So what does this mean? IF the MRI is correct, there is no communication between Sophie's brain tissue and the "lesion"! That is amazing news because that would mean we would no longer need to see Dr. Greene, the neurologist. While Sophie's surgery would still be a big deal, it would be much less complicated. I feel that this is the best news we could have gotten. We have accepted the fact that she needs surgery. We know that she will need to be in the PICU and stay in the hospital for a week or so, but without her brain involvement, we feel much more comfortable with the surgery.
Without needing Dr. Greenes involvement, the surgery should be much sooner than we expected. We will still need to have the blood drive as well, so I'm sure I will be getting those details nailed down within the next week or so. Things are really starting to move forward more quickly than we anticipated.
So now we wait for that next phone call...(and pray that the radiologist read the MRI correctly!)
So what does this mean? IF the MRI is correct, there is no communication between Sophie's brain tissue and the "lesion"! That is amazing news because that would mean we would no longer need to see Dr. Greene, the neurologist. While Sophie's surgery would still be a big deal, it would be much less complicated. I feel that this is the best news we could have gotten. We have accepted the fact that she needs surgery. We know that she will need to be in the PICU and stay in the hospital for a week or so, but without her brain involvement, we feel much more comfortable with the surgery.
Without needing Dr. Greenes involvement, the surgery should be much sooner than we expected. We will still need to have the blood drive as well, so I'm sure I will be getting those details nailed down within the next week or so. Things are really starting to move forward more quickly than we anticipated.
So now we wait for that next phone call...(and pray that the radiologist read the MRI correctly!)
Wednesday, October 31, 2012
Change in appointments
In addition to having her MRI moved up, we were able to move up her appointment with Dr. Greene. She will now see him on Wednesday, November 7th. That is an entire month earlier! We are very thankful that things have moved along as quickly as they have.
We have been also been briefed on what time to get Sophie to the hospital tomorrow, as well as what to expect regarding her MRI. With a little bit of luck, we will hear from Dr. St. Hilaire by Friday evening with the results. We are a little nervous, but looking forward to finding out what this lesion is so that we can move ahead and schedule the surgery.
I will update as soon as we know more. Thank you again for all of your support and kindness. It means the world to us!
We have been also been briefed on what time to get Sophie to the hospital tomorrow, as well as what to expect regarding her MRI. With a little bit of luck, we will hear from Dr. St. Hilaire by Friday evening with the results. We are a little nervous, but looking forward to finding out what this lesion is so that we can move ahead and schedule the surgery.
I will update as soon as we know more. Thank you again for all of your support and kindness. It means the world to us!
Tuesday, October 30, 2012
MRI rescheduled
Our pediatrician helped us out tremendously. We filled him in on everything regarding Sophie yesterday and he called us this morning to let us know that he got her an appt. for an MRI on Thursday! We are hoping to get the results before the weekend and we can then move on from there. I am anxious, yet relieved that we will not have to wait until December to find out exactly what is going on.
Thank you all for the prayers and support. It really means a lot to us!
Thank you all for the prayers and support. It really means a lot to us!
Sunday, October 28, 2012
MRI/A date
We got the call telling us when Sophies MRI/A is going to be. They couldn't get us an appointment until December 7th. Our appointment with Dr. Greene, the neurologist, is going to be on December 19th.
I don't know how they expect us to wait to find out this news for so long. We are going to try to call our pediatrician on Monday to see if he can help us get an appointment earlier. Once we meet with the neurologist, the surgery will be scheduled.
I don't know how they expect us to wait to find out this news for so long. We are going to try to call our pediatrician on Monday to see if he can help us get an appointment earlier. Once we meet with the neurologist, the surgery will be scheduled.
CT scan- 10/25/12
We made it to Children's Hospital by 7am. With both Tyce and Elliana in tow, we waited for her name to be called. Cristian took Elliana with him to take Tyce to school as I waited with Sophie. Once we were called back, Sophie was checked out and I was briefed on how the CT scan would go. Because Sophie is so little, she would have to be sedated for the scan. They gave her a medicine that would make her forget, and off we went to radiology. I was able to give her a squeeze and a kiss and then I was escorted to the waiting area. Cristian still wasn't back at this time and I was a little anxious. It was hard sitting there without by baby. She was without her twin sister for the first time and I kept telling myself that it would be over soon enough.
After about 30 minutes, they called for me and I was able to go into recovery with Sophie, who was already wide awake. The sedation didn't seem to agree with her because she was letting out this high pitched scream that I had never heard from her before. The nurses assured me that she was just angry because her body wasn't working properly yet because the medicine was still in her system. They took her IV out and within seconds, she started vomiting everywhere. My poor girl was so confused and couldn't stop crying and throwing up. This was such a hard thing to see, but I kept comforting her. They gave her some anti-nausea medicine that kicked in after about 20 minutes and she drifted off into a deep sleep. That must have made her feel much better because we were able to leave the hospital, pedialyte in hand, and take our baby home.
We were anxious for the CT results, but fully expected the results to be normal. We were told that we would probably hear the results within 3-5 days unless there was an issue. Not even two hours into getting home, my phone rang. It was Dr. St. Hilaire's office.
The beginning of the call is still a blur. Because I wasn't expecting bad news, I couldn't understand what she was telling me. I did hear that the CT scan showed, "communication between brain tissue and the lesion". From what I understand, in the area that we have seen asymmetry, she is missing part of her skull. Yes, her skull. How we never found this out during our many perinatologist visits, or on her initial x-ray at birth, I will never know... Besides her missing part of her skull, there is a lesion as well. In order to find out what the lesion is, we need to have an MRI/A (I'm not certain if it is an MRI or an MRA because the nurse kept saying one or the other throughout our conversation). Because I am not a doctor, I am sure that I won't be explaining this correctly, but I will give it a try.
The lesion can be one of many things. We are hoping that her brain is not intertwined with whatever this lesion is. (I'd like to add that the doctor said her brain looked perfect) If that is the case, Dr. Greene will have to separate what he can before Dr. St. Hilaire can repair/create the piece of missing skull. For right now, we can just hope that the lesion is not a big deal and it will be a more simple surgery of creating/repairing the part of her skull that is missing. When I asked the nurse how they would do this, she said that they can use a number of techniques, but that because she is so small, they might use bones from a bone bank.
From what we know, Sophie will have to have a major surgery. Dr. St. Hilaire will be there, as well as Dr. Greene, a neurologist. It will take a minimum of 4 hours and require at least one night in PICU, followed by 4-6 nights in the hospital. They will cut from ear to ear along her hairline and she will have a drain.
We do know that Sophie will most likely need a transfusion because she is so little and will lose a lot of blood. Ironically, she is an identical twin, but we cannot use Elli's blood because you have to be at least 16 to donate. We are now in the process of giving permission for Dr. St. Hilaire's office to receive lab results from Sophie's birth hospital. Once we have all of that figured out, we will set up a blood drive for Sophie.
We are truly thankful for our doctors, especially Dr. St. Hilaire. He is a father of multiples himself, so he seems to understand a little more of what we are going through. The doctors and their teams are absolutely amazing and their nurses have listened to me on the phone for many hours already. They are extremely patient and caring.
This is still so surreal and we can't believe that something we were told was most likely positional, turned out to be something so severe. Sophie and Elli have been keeping us smiling since we were told the news and we have positive feelings about this whole thing. We are very thankful and blessed that we found this now while she is so young and are looking forward to the future once this is all behind us.
Elli & Sophie
Sophie
Sophie
Elli & Sophie
Elli & Sophie
After about 30 minutes, they called for me and I was able to go into recovery with Sophie, who was already wide awake. The sedation didn't seem to agree with her because she was letting out this high pitched scream that I had never heard from her before. The nurses assured me that she was just angry because her body wasn't working properly yet because the medicine was still in her system. They took her IV out and within seconds, she started vomiting everywhere. My poor girl was so confused and couldn't stop crying and throwing up. This was such a hard thing to see, but I kept comforting her. They gave her some anti-nausea medicine that kicked in after about 20 minutes and she drifted off into a deep sleep. That must have made her feel much better because we were able to leave the hospital, pedialyte in hand, and take our baby home.
We were anxious for the CT results, but fully expected the results to be normal. We were told that we would probably hear the results within 3-5 days unless there was an issue. Not even two hours into getting home, my phone rang. It was Dr. St. Hilaire's office.
The beginning of the call is still a blur. Because I wasn't expecting bad news, I couldn't understand what she was telling me. I did hear that the CT scan showed, "communication between brain tissue and the lesion". From what I understand, in the area that we have seen asymmetry, she is missing part of her skull. Yes, her skull. How we never found this out during our many perinatologist visits, or on her initial x-ray at birth, I will never know... Besides her missing part of her skull, there is a lesion as well. In order to find out what the lesion is, we need to have an MRI/A (I'm not certain if it is an MRI or an MRA because the nurse kept saying one or the other throughout our conversation). Because I am not a doctor, I am sure that I won't be explaining this correctly, but I will give it a try.
The lesion can be one of many things. We are hoping that her brain is not intertwined with whatever this lesion is. (I'd like to add that the doctor said her brain looked perfect) If that is the case, Dr. Greene will have to separate what he can before Dr. St. Hilaire can repair/create the piece of missing skull. For right now, we can just hope that the lesion is not a big deal and it will be a more simple surgery of creating/repairing the part of her skull that is missing. When I asked the nurse how they would do this, she said that they can use a number of techniques, but that because she is so small, they might use bones from a bone bank.
From what we know, Sophie will have to have a major surgery. Dr. St. Hilaire will be there, as well as Dr. Greene, a neurologist. It will take a minimum of 4 hours and require at least one night in PICU, followed by 4-6 nights in the hospital. They will cut from ear to ear along her hairline and she will have a drain.
We do know that Sophie will most likely need a transfusion because she is so little and will lose a lot of blood. Ironically, she is an identical twin, but we cannot use Elli's blood because you have to be at least 16 to donate. We are now in the process of giving permission for Dr. St. Hilaire's office to receive lab results from Sophie's birth hospital. Once we have all of that figured out, we will set up a blood drive for Sophie.
We are truly thankful for our doctors, especially Dr. St. Hilaire. He is a father of multiples himself, so he seems to understand a little more of what we are going through. The doctors and their teams are absolutely amazing and their nurses have listened to me on the phone for many hours already. They are extremely patient and caring.
This is still so surreal and we can't believe that something we were told was most likely positional, turned out to be something so severe. Sophie and Elli have been keeping us smiling since we were told the news and we have positive feelings about this whole thing. We are very thankful and blessed that we found this now while she is so young and are looking forward to the future once this is all behind us.
The beginning
Sophie Mae and Elliana Isabel were born at 35 weeks and 2 days at 4 lbs. 13 ozs. and 4 pds. 11 ozs. on September 29, 2011. Although they were early, they were perfectly healthy. Once the girls were brought to my hospital room, the nurse and I immediately noticed that Sophie's left eye seemed a little swollen on one side. Just to rule anything out, they ordered an x-ray. The x-ray came back normal and we were told that it was probably because she was a little smushed inside the womb; after all, there's not much room in there when you're sharing space with your identical sister! We were happy to hear of it and didn't think much of it after that.
Fast forward to our 2 month WBV. Our pediatrician noticed that the "smushing" was still there and her eyebrow was not forming completely. We could also see that she had a fair amount of facial asymmetry on her left side, mainly her eye and nose. It was very much exaggerated when you looked at her through a mirror. Still, he thought that it was positional and could take up to a year to even out. This was an easy way for us to tell the girls apart and because it didn't seem like too much of an issue, we didn't worry about it much. I should also add that she has been developing normally and is completely neurologically intact. She is so smart and is eager to say hi to everyone she meets! Elli and her are starting to create their own language. It is the cutest thing to watch. My little Sophie has the most amazing personality and is the sweetest little girl you could have.
At the babies 6 month WBV, our pediatrician wanted to be on the safe side and set us up with Dr. St. Hilaire, a craniofacial doctor and plastic surgeon at Children's Hospital. That visit was a long wait, but a quick meeting. He is a father of triplets himself and also agreed that it was likely to be a positional issue within the womb and should clear up on his own. He also remarked on how beautifully her head was shaped; this ruled out craniosynostosis (phew!) We were to see him again in 6 months time, when she turned a year old. We were also sent to a pediatric eye doctor to make sure that all was good with her vision. Dr. Balkan said that her eyes looked great, but remarked that he wanted to see us again in 6 months because she had a blocked tear duct in that left eye. If it wasn't cleared by then, he would like to do a quick surgical procedure to see if he could fix it.
Six months later, we went back to Dr. St. Hilaire. I mentioned to him that Dr. Balkan was concerned about Sophie's tear duct. With more talking, Dr. St. Hilaire said that it would probably be a good idea to get a CT scan to make sure that everything looked good. He expected it to turn out to be what we were told all along, but since our pediatrician hadn't seen much/if any improvement yet, it would be a good idea.
Elli & Sophie
Elli and Sophie
Sophie
Elli & Sophie
Sophie & Auntie
Elli & Sophie
Sophie
Tyce, Sophie & Elli
Sophie & Elli
Sophie
Sophie
Fast forward to our 2 month WBV. Our pediatrician noticed that the "smushing" was still there and her eyebrow was not forming completely. We could also see that she had a fair amount of facial asymmetry on her left side, mainly her eye and nose. It was very much exaggerated when you looked at her through a mirror. Still, he thought that it was positional and could take up to a year to even out. This was an easy way for us to tell the girls apart and because it didn't seem like too much of an issue, we didn't worry about it much. I should also add that she has been developing normally and is completely neurologically intact. She is so smart and is eager to say hi to everyone she meets! Elli and her are starting to create their own language. It is the cutest thing to watch. My little Sophie has the most amazing personality and is the sweetest little girl you could have.
At the babies 6 month WBV, our pediatrician wanted to be on the safe side and set us up with Dr. St. Hilaire, a craniofacial doctor and plastic surgeon at Children's Hospital. That visit was a long wait, but a quick meeting. He is a father of triplets himself and also agreed that it was likely to be a positional issue within the womb and should clear up on his own. He also remarked on how beautifully her head was shaped; this ruled out craniosynostosis (phew!) We were to see him again in 6 months time, when she turned a year old. We were also sent to a pediatric eye doctor to make sure that all was good with her vision. Dr. Balkan said that her eyes looked great, but remarked that he wanted to see us again in 6 months because she had a blocked tear duct in that left eye. If it wasn't cleared by then, he would like to do a quick surgical procedure to see if he could fix it.
Six months later, we went back to Dr. St. Hilaire. I mentioned to him that Dr. Balkan was concerned about Sophie's tear duct. With more talking, Dr. St. Hilaire said that it would probably be a good idea to get a CT scan to make sure that everything looked good. He expected it to turn out to be what we were told all along, but since our pediatrician hadn't seen much/if any improvement yet, it would be a good idea.
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