Did everyone have a great Easter? Does it feel like it was FOREVER ago already? It sure does for me! It's funny how quickly we go back to the grind of every day life and those days spent with family and friends seem like a distant memory.
We had a great time visiting with family. Here's a picture of the cousins together.
We had a full house with Chad's sister visiting along with her husband and four boys. Never a dull moment with six kids in the house! We shared many meals together and logged a lot of time outside in the beautiful sunshine in our backyard. There was coloring and games and easter egg hunting; Abby is still asking where her cousins are. I'm sure I must be pretty boring in comparison!
After Easter my oldest sister came to visit. She had the privilege of leaving her two boys at home with her husband and coming to stay with us for a few days. It was wonderful being able to catch up; we spent many hours sitting on the couches talking. She got to meet Julia and spend some time with Abby. I enjoyed the fact that she was my great excuse to not do much.....the housework could wait until she was gone! We had great weather and checked out the beach together.
Now that some of the visiting is over, it's time for a round of doctor's appointments for little Miss Julia. We went to BC Children's Hospital on the 15th for a head ultrasound and a meeting with the plastic surgeon. Other than a TWO hour wait to see Dr. Courtemanche (the plastic surgeon) it was all good news so far. We are waiting to hear the results of her ultrasound, but I'm confident that nothing critical is happening as it's currently been 48 hours with no contact from Dr. Steinbok (her neurosurgeon). We meet with Julia's pediatrician on the 24th so I hope to hear about the findings at that time.
Between Julia's ultrasound and her appointment with the plastic surgeon we had time to kill. I had taken Julia on my own to her ultrasound appointment and Chad wasn't meeting us for her plastics appointment for over an hour so what do you do around Children's hospital?
You go for a walk.
They have beautiful landscaping around the buildings and a ring road that surrounds all of them so we went for a stroll. It was great to get some fresh air and Julia took a little nap. She was quite the trooper and barely fussed at all the whole time we were at the hospital. There will be many days of her life spent at BC Children's so I'm glad that it doesn't seem like it will be a struggle for her or for me.
After meeting up with Chad, checking in for her plastics appointment, and being told the doctor was running about 40 minutes behind, we hit up the Second Cup on site. We went back to the waiting area 30 minutes later and then proceeded to wait another almost 90 minutes. It's kind of unbelievable that we had to wait so long but c'est la vie. Like I said though, Julia was a trooper and barely fussed so the worst part was Chad and I having to add more time to our parking stalls. We will have funded a whole wing of the hospital with our parking payments by the end of this! I should also say that I'm super thankful that Julia is my second baby - breastfeeding in public is SO much easier this time around. Throw on my nursing cover and away we go. Anytime. Anyplace. Way less stressful than it was with Abby, so yay!
Now for the news from the plastic surgeon.
He is very happy with how she is developing. He checked her soft spots and seemed to think they were a good size and shaped well. Apert kids can have really large sections of bone missing in their skull, but so far Julia's aren't too large. He also took a look at her hands and feet. He was impressed with the flexibility of her feet but commented on the shape. She has the typical "opposite" curvature to her feet that Apert kids have so instead of bearing weight on the outside bones of the feet she will have more weight on the middle portion (at this point anyways - apparently this will be looked at further down the road when she starts standing/walking).
Dr. Courtemanche also commented on her hands. He found it interesting that her hands actually differ slightly in their severity. Her left hand is almost what they would call a "rosebud" where all the fingers are very close together, almost on top of one another, and have a continuous nail bed. Her nails are still separate and her thumb and pinky are still quite defined from the middle three fingers - hence, not quite a true rosebud.
Her right hand is a little less severe, with her fingers more or less straight across, and it also has a defined thumb and pinky finger. Since her first surgery will be to release the thumbs and pinky fingers this seems to be a pretty positive thing.
He also commented on her range of motion. People with Apert syndrome can have very limited range of motion, especially in their shoulders. This is due to there being a difference in the shape/formation of the shoulder blades. Some people with the syndrome are unable to lift their hands above their head but so far Julia seems able to move her arms in all directions. For that, we are very thankful!
We have no sleeping or feeding concerns with Julia either, which has been really great! We may have to do a sleep study sometime down the road as kids/people with Apert syndrome have a much higher chance of sleep apnea due to the formation of their epiglottis and surrounding structures. But, we will cross that bridge later if we need to.
At the end of the appointment we discussed Julia's first surgery. As long as she continues to stay happy and healthy she will be having her thumb and pinky release surgery at the end of June. The thumbs and fingers will be separated out and they will take skin grafts from her lower abdomen to fill in the open areas. We signed a release form to get the ball rolling and now we wait to hear from them regarding the specific date. Thankfully they were accommodating and agreed to schedule the surgery for after the middle of June so we can attend my sister's wedding without a recovering baby wrapped in bandages!
On the drive home from the hospital it hit me what I had just signed. I put my signature on a piece of paper that will allow people I've only met once or twice (or never before!) to anesthetize my six month old baby girl and perform surgery on her precious little hands. If I'm totally honest I definitely shed a few tears on that drive home and continue to do so every time I think about it. I know, practically speaking, that this is such a great thing. She is getting to the age of wanting to use her hands to touch, play, and grab objects. With the separation of some of her fingers - especially her thumbs - she will learn to use them from a young age and continue to master all the things that a typical baby should.
But, from my Momma perspective...I'm scared.
I'm emotional.
I'm protective.
I want to just scoop her up, hold her tight, and never let her go.
I continue to remind myself that this is for the greater good. It's like getting her vaccinated - knowingly letting someone poke needles into her and hearing her cry is not my idea of a good time but it's necessary. I believe the outcome is a positive one and the good greatly outweighs the bad. (I'm in NO way looking to have a debate on vaccinations here; it's just the best analogy I have.)
The reality of surgery is setting in so it's time for me to do some major soul searching and lots and lots of prayer. I need to believe that the Creator will see this through in his perfect way and that I can rest in the knowledge that we aren't alone as we go through this major event. It's going to be really hard. I can't even fathom what I'm going to feel when they take my baby girl away from me. I do know, however, that we have so many family and friends that will rally around us with prayer and support and that eases the pain ever so slightly.
And these smiles. These smiles make it okay.
We had a great time visiting with family. Here's a picture of the cousins together.
We had a full house with Chad's sister visiting along with her husband and four boys. Never a dull moment with six kids in the house! We shared many meals together and logged a lot of time outside in the beautiful sunshine in our backyard. There was coloring and games and easter egg hunting; Abby is still asking where her cousins are. I'm sure I must be pretty boring in comparison!
After Easter my oldest sister came to visit. She had the privilege of leaving her two boys at home with her husband and coming to stay with us for a few days. It was wonderful being able to catch up; we spent many hours sitting on the couches talking. She got to meet Julia and spend some time with Abby. I enjoyed the fact that she was my great excuse to not do much.....the housework could wait until she was gone! We had great weather and checked out the beach together.
Now that some of the visiting is over, it's time for a round of doctor's appointments for little Miss Julia. We went to BC Children's Hospital on the 15th for a head ultrasound and a meeting with the plastic surgeon. Other than a TWO hour wait to see Dr. Courtemanche (the plastic surgeon) it was all good news so far. We are waiting to hear the results of her ultrasound, but I'm confident that nothing critical is happening as it's currently been 48 hours with no contact from Dr. Steinbok (her neurosurgeon). We meet with Julia's pediatrician on the 24th so I hope to hear about the findings at that time.
Between Julia's ultrasound and her appointment with the plastic surgeon we had time to kill. I had taken Julia on my own to her ultrasound appointment and Chad wasn't meeting us for her plastics appointment for over an hour so what do you do around Children's hospital?
You go for a walk.
They have beautiful landscaping around the buildings and a ring road that surrounds all of them so we went for a stroll. It was great to get some fresh air and Julia took a little nap. She was quite the trooper and barely fussed at all the whole time we were at the hospital. There will be many days of her life spent at BC Children's so I'm glad that it doesn't seem like it will be a struggle for her or for me.
After meeting up with Chad, checking in for her plastics appointment, and being told the doctor was running about 40 minutes behind, we hit up the Second Cup on site. We went back to the waiting area 30 minutes later and then proceeded to wait another almost 90 minutes. It's kind of unbelievable that we had to wait so long but c'est la vie. Like I said though, Julia was a trooper and barely fussed so the worst part was Chad and I having to add more time to our parking stalls. We will have funded a whole wing of the hospital with our parking payments by the end of this! I should also say that I'm super thankful that Julia is my second baby - breastfeeding in public is SO much easier this time around. Throw on my nursing cover and away we go. Anytime. Anyplace. Way less stressful than it was with Abby, so yay!
Now for the news from the plastic surgeon.
He is very happy with how she is developing. He checked her soft spots and seemed to think they were a good size and shaped well. Apert kids can have really large sections of bone missing in their skull, but so far Julia's aren't too large. He also took a look at her hands and feet. He was impressed with the flexibility of her feet but commented on the shape. She has the typical "opposite" curvature to her feet that Apert kids have so instead of bearing weight on the outside bones of the feet she will have more weight on the middle portion (at this point anyways - apparently this will be looked at further down the road when she starts standing/walking).
This picture isn't the greatest angle, but see how her big toes and baby toes sit higher than the rest? Now look at your feet. Notice how weight gets put on the outsides of your feet below your big toes and baby toes? You may have thicker skin on those outside edges to prove it. Julia's weight will rest on the middle toes instead of the outside.
Dr. Courtemanche also commented on her hands. He found it interesting that her hands actually differ slightly in their severity. Her left hand is almost what they would call a "rosebud" where all the fingers are very close together, almost on top of one another, and have a continuous nail bed. Her nails are still separate and her thumb and pinky are still quite defined from the middle three fingers - hence, not quite a true rosebud.
Her right hand is a little less severe, with her fingers more or less straight across, and it also has a defined thumb and pinky finger. Since her first surgery will be to release the thumbs and pinky fingers this seems to be a pretty positive thing.
He also commented on her range of motion. People with Apert syndrome can have very limited range of motion, especially in their shoulders. This is due to there being a difference in the shape/formation of the shoulder blades. Some people with the syndrome are unable to lift their hands above their head but so far Julia seems able to move her arms in all directions. For that, we are very thankful!
We have no sleeping or feeding concerns with Julia either, which has been really great! We may have to do a sleep study sometime down the road as kids/people with Apert syndrome have a much higher chance of sleep apnea due to the formation of their epiglottis and surrounding structures. But, we will cross that bridge later if we need to.
At the end of the appointment we discussed Julia's first surgery. As long as she continues to stay happy and healthy she will be having her thumb and pinky release surgery at the end of June. The thumbs and fingers will be separated out and they will take skin grafts from her lower abdomen to fill in the open areas. We signed a release form to get the ball rolling and now we wait to hear from them regarding the specific date. Thankfully they were accommodating and agreed to schedule the surgery for after the middle of June so we can attend my sister's wedding without a recovering baby wrapped in bandages!
On the drive home from the hospital it hit me what I had just signed. I put my signature on a piece of paper that will allow people I've only met once or twice (or never before!) to anesthetize my six month old baby girl and perform surgery on her precious little hands. If I'm totally honest I definitely shed a few tears on that drive home and continue to do so every time I think about it. I know, practically speaking, that this is such a great thing. She is getting to the age of wanting to use her hands to touch, play, and grab objects. With the separation of some of her fingers - especially her thumbs - she will learn to use them from a young age and continue to master all the things that a typical baby should.
But, from my Momma perspective...I'm scared.
I'm emotional.
I'm protective.
I want to just scoop her up, hold her tight, and never let her go.
I continue to remind myself that this is for the greater good. It's like getting her vaccinated - knowingly letting someone poke needles into her and hearing her cry is not my idea of a good time but it's necessary. I believe the outcome is a positive one and the good greatly outweighs the bad. (I'm in NO way looking to have a debate on vaccinations here; it's just the best analogy I have.)
The reality of surgery is setting in so it's time for me to do some major soul searching and lots and lots of prayer. I need to believe that the Creator will see this through in his perfect way and that I can rest in the knowledge that we aren't alone as we go through this major event. It's going to be really hard. I can't even fathom what I'm going to feel when they take my baby girl away from me. I do know, however, that we have so many family and friends that will rally around us with prayer and support and that eases the pain ever so slightly.
And these smiles. These smiles make it okay.
So much good information here!
ReplyDeleteI can only imagine how scary it must be for you and your family. Love that last picture. Julia looks so happy.
She has a smile for anyone who stops to say hi and smile at her!
DeleteWe are scared but ever hopeful as we know surgery will give her a greater quality of life. Thanks for reading!