I can't believe it's only been a couple weeks since Julia's surgery. It feels like it was so long ago - though it could just be that my brain is pushing those memories far, far away so I can pretend like it never happened....a highly likely situation. Surgery went extremely well and the surgeon has been really happy with her healing thus far but it was still a traumatic experience. It's the type of experience you don't wish on others, and yet this is only the first of many for us and our baby girl.
So this story begins the day prior to surgery. On September 9th, I took Julia to Children's Hospital for a routine head ultrasound and a pre-op appointment with the anesthesiologist. Her pre-op appointment was at 12:30pm and her ultrasound scheduled for 2:30pm. They are right next to each other in the hospital so we were bound to have a gap of time in between. I planned on feeding Julia and going for a walk....but you know what happens when you make plans, right? Especially when they involve the medical system! We ended up shuffling back and forth between the two departments multiple times with nothing running all that smoothly. Wednesdays are, according to our anesthesiologist, tough days to meet as they tend to have minimal staff on duty. Since our anesthesiologist was in surgery with a patient (and no extra staff to take over for him) we had to wait until he was done. So we waited in a room for a loooong time - long enough for Julia to make her way to the bottom of my Cheerios bag.
We were still waiting at 2pm for the anesthesiologist so the head nurse said that they had called radiology and we could go see them right away and then come back in time to meet the anesthesiologist.
Okay. Sounds good.
So we head next door to radiology for the ultrasound. We check in and sit in the waiting room for about 45 minutes (I knew better than to believe getting in "right away" meant no waiting). The head nurse from the pre-op area then comes over to us to say that the anesthesiologist is ready to see us. She can't believe we haven't had Julia's head ultrasound yet as she was told we would be seen right away.....my thoughts too, but oh well.
So we head back over to meet the anesthesiologist. A super nice guy, thankfully. We chat a bit and discuss some of the details of Julia's surgery. He explains how ventilation with Apert syndrome kids can be a bit trickier due to their smaller air ways and talks about what steps they take to ensure proper breathing while under the anesthetic. It was comforting to know what he has dealt with this syndrome before so he knew the tricky areas and was prepared.
After leaving the pre-op meeting, we head back over the radiology. Again.
This time, thankfully, we only waited for a couple minutes before being called in. The ultrasound was quick and easy with great results; she has no increase in fluid and no major changes from her last ultrasound (hooray!). By the end of it all we were SO ready to be heading home.
September 10th, 2015. Surgery day.
We had to be at the hospital at 6:45am. It was a bright and early morning for everyone but Abby. She slept peacefully while we made our way into the city and Grandpa sat downstairs quietly drinking his coffee.
Once we arrived, the nurses gave us a cute, little infant size hospital gown to put on Julia.
The anesthesiologist came by and took a look at Julia's legs by ultrasound - her IV was going to be inserted into her saphenous vein (a nice big one in her leg since babies don't exactly have large veins in their feet and they couldn't exactly put an IV in her hand). We kept Julia wrapped in a warm blanket to keep her core temperature up since she would be under the anesthetic for over 2 hours. Then, just before 8am we passed our little girl over to a nurse.
I kept myself together a little better than I had imagined I would. The world got a bit blurry as I watched a strange lady walk my baby girl through those double doors into the unknown. But, I trusted that Julia was in good hands and knew we couldn't do anything more but wait and pray.
Chad and I decided to head to the Starbucks nearby to grab our second coffee of the day. We sat down and recognized three separate parties that we had seen in the waiting area of the surgical area. It gave me a whole new perspective on that area of the hospital. Each time I take Julia for an appointment with the plastic surgeon or the neurosurgeon I walk past that sitting area by Starbucks. I have a deep awareness now that each person I walk by has a story; they are wrestling with emotions and situations that we know nothing about. During Julia's surgery we were the ones sitting on those chairs with a million thoughts, questions, and emotions coursing through our minds. The minutes passed slowly.
The waiting was hard.
We were told to head back to the surgical waiting area by 9:30am just in case the surgery finished early. So we headed back and proceeded to wait for another hour. Doctors were coming out and meeting with other families and giving overviews of how surgery went for their children. Julia's surgery was supposed to finish around 10:10am if all went according to plan, so after that time struck on the clock I started to get a bit nervous. Finally, we saw Dr. Courtemanche come around the corner. He came over and told us that surgery had gone really well; that they had accomplished everything they had wanted to. We would have to wait until Julia came out of the anesthetic but that we would get to see her shortly. Chad and I had a collective sigh of relief. We found out later that they ran a bit late because they had to use the ultrasound machine again in the OR to locate her vein for the IV; a much nicer reason to run late than the scenarios that had previously ran through my mind in that waiting area.
"Everything went really well."
Those sweet, sweet words brought a fresh set of tears to my eyes. Recovery wasn't going to be easy, but the big, scary part was over.
Within 5 minutes we were being called in to go see Julia. She had woken up from the anesthetic really quickly and easily. She was drinking some sugar water from a bottle (she hadn't taken a bottle since her five day stay in the hospital when she was born!!) but was still really groggy. I asked if I could breastfeed her and the nurse was more than happy to help me maneuver a sleepy, bandaged baby. She fed slowly but did well and when she was done she fell asleep in my arms where I was more than happy to let her stay.
Once there was a bed available upstairs we were transported to the room we would stay in overnight. We shared the room with a little boy and his parents. He had had surgery the day before for a g-tube insertion so he was still a little uncomfortable at times but was quite comfortable compared to Julia. I felt bad that we were the noisier of the two but there's only so much you can do. Thankfully, the little boy's parents had shared with me that the previous night had been really rough for them so I knew they understood.
Julia slept once in her bed.
Once. For about 15 minutes.
Other than that, I had to hold her, rock her, nurse her, walk with her. She was clearly uncomfortable but not in agony. We were giving her Tylenol every 6 hours and she even got a shot of codeine at one point. The poor girl just didn't want to be laying down in the bed so I had to hold her. It was the longest night of my life. Chad had gone home in the early afternoon to relieve Grandpa from babysitting so I was alone with a feeling-heavier-by-the-minute Julia. Thankfully, Chad had brought me a sandwich before he left so I finally ate something which made me feel much better.
Chad and Abby stopped by for a quick visit around 7pm which was a nice break and he brought me another sandwich for supper. Chad held Julia and I got to spend a little bit of time with Abby. It's so easy to leave the other children "behind" but we felt that it was good for Abby to feel involved and be a part of it all. We never want Abby to feel that we don't have time for her or that we love Julia more because she requires more of our time during these bouts of hospitalization. So, Abby and I read some stories and took a walk around the ward. We set up my bed for the night and visited with the little boy beside us. It was a bit rough when it was time for Chad and Abby to go. Abby still doesn't quite understand why Mommy can't come home too. So, poor Chad had to carry a screaming toddler to the elevator as she didn't want to leave me. I'm hopeful that as time goes by Abby will come to understand the situation a bit more and won't feel quite as abandoned.
The rest of the evening and night dragged on, and on, and on, and on. I would rock Julia to sleep in my arms and try and transfer her into her bed. That never worked so I resigned to sleeping with her on my little cushions on the floor. Thankfully, I had brought my own pillow so it could have been worse....but it was exhausting. I would wait until she was asleep and then slowly sink down onto the bed with her snuggled in my arm. I would lay on my side facing her with my arm still tucked underneath and it didn't take long for my shoulder and arm to get numb. But, there was no way I was going to jostle her and potentially wake her. So there we "slept." For about 40 minutes at a time, until Julia would wake up again whimpering and crying. I would get up and rock her/nurse her until she calmed down and fell asleep again and we would do it all over again.
Hospitals are just really not conducive to sleep. Julia was hard enough to get to sleep as it was....but we had a little girl, probably 3 years old, in the next room with both her legs and pelvis in a big cast and she wasn't sleeping well either - for obvious reasons. Also, on the other side of us was a patient which I can only describe as needing to be on the psychiatric ward. When a nurse would enter her room to check her vitals she would shriek and scream and swear and rattle her bed railings. At around 3am she carried on for over an hour. There were multiple nurses and doctors inside and outside her room; I'm not sure if she eventually calmed on her own or whether she had a little help from an injection...but hearing only the beeping of hospital machines sounded peaceful in comparison.
By quarter to six I threw in the towel and called it morning time. Shift change for the nurses happened at 7am and not long after we got a visit from a Fellow doctor who had been in Julia's surgery with Dr. Courtemanche. He said we were getting discharged and I was SO happy to be leaving and going home. I was feeling like a zombie and was dreaming of my own bed with no child in my arms. We had to wait a while for paperwork to be filled out but we were allowed to leave by 10am. Chad and Abby came to pick us up and I was so thankful for Chad's extra set of hands. Julia's IV came out, she got out of that little hospital gown, and went into her stroller. We grabbed McDonald's breakfast on the way home and I don't think McDonald's had ever tasted so good!
The moment we got home, Julia was like a whole new child. Her whining stopped and she was genuinely happy. She played in her exersaucer like nothing had ever happened. She had moments of whining which usually coincided with her Tylenol wearing off, but normal (non-codeine) Tylenol every 6 hours was totally manageable for us. She slept in her own crib just like our routine had always been - which was awesome. I was little nervous that our night of "co-sleeping" would throw her off our routine, but it didn't. She still doesn't sleep as well in the night as she did pre-surgery but I have a sneaking suspicion that it as more to do with four pesky teeth coming in all at the same time than it has to do with her hands.
My parents drove out to visit and help once Chad went back to work on Monday. It was a lovely transition and it helped they brought their 4 month old puppy with them! I was worried that Abby was going to be a little extra clingy since I had "left her behind" when I was at the hospital with Julia....but Topaz was a great distraction! I had never seen Abby so happy to leave me. She would close the door behind her and happily say "Bye, Mommy!" as she went to play with Opa (my Dad) and Topaz in another room. We ran out of bubble solution and Opa saved the day with a homemade concoction, which was a hit with Abby. My Mom helped with meals and saved my mental health by chatting about anything and everything. The timing also worked well as they were here to watch Abby while I took Julia to her first follow-up appointment.
Currently, we have now had two follow-up appointments with Dr. Courtemanche and he is very pleased with how her healing is going. Her skin grafts are "taking" on her hands, and the grafting site on her abdomen is scarring really well.
This past Monday night, Julia got to have her first bath since surgery. We soaked her little hands and abdomen in the bath water and gave her a much needed overall clean. With the help of Chad and his parents I re-bandaged her hands before bringing her in to see Dr. Courtemanche the following morning. He asked us to soak and re-bandage ourselves so that it was easier to remove the bandages. Imagine pulling a Band-Aid off a cut you have where the scab has formed between your skin and the pad of the Band-Aid. It's much easier and much more comfortable to remove the Band-Aid after soaking it in water and softening everything. So, same concept - plus, she was much more relaxed at home compared to when we see the doctor in his office.
To date, her grafted skin is now strong enough to withstand the friction of daily life but we are waiting for the stitches to fully dissolve before we uncover them further. A stitch catching on something and pulling would NOT be fun for her so there won't really be much of a reveal for another week. After that, we will have to slightly bandage her hands for another month in order to discourage scar tissue growing and creeping up into the web spaces between her fingers.
The recovery for her surgery seems more minor and more extensive to me than I had first imagined. She was in pain/discomfort for such a minimal amount of time, yet we will be actually managing the healing aspect for a bit longer than I had thought. We had been told that it would take about 6 weeks total for healing, but I hadn't really thought about the ongoing bandaging required at home. So, today we added to the items we have in our home medical kit in order to take care of our little one's new digits. I have decided that coming from a medically inclined family is quite a blessing! I feel like I am learning so much, but I know that I have a pretty great base knowledge compared to some people - and for that I am thankful.
We are also so, SO very thankful. Grateful. Humbled. by all the love, prayer, and support we have received. We cannot even begin to explain how much comfort you have all brought to us during this time. Prayers have most definitely been answered and love has been felt pouring in from all over the world.
Thank you.
Thank you.
Thank you!
And just when you thought "Oh good, I'm glad Julia is healing well and they can see the light at the end of the tunnel...." we have another update. Julia is already set for her next surgery. Her cranial surgery is penciled in for November 27th, 2015. Two months from now. We knew it was coming but hadn't really mentally prepared for them to be so close together. This surgery is a much longer, more invasive procedure, but I'll get into the details of that on another day.
So this story begins the day prior to surgery. On September 9th, I took Julia to Children's Hospital for a routine head ultrasound and a pre-op appointment with the anesthesiologist. Her pre-op appointment was at 12:30pm and her ultrasound scheduled for 2:30pm. They are right next to each other in the hospital so we were bound to have a gap of time in between. I planned on feeding Julia and going for a walk....but you know what happens when you make plans, right? Especially when they involve the medical system! We ended up shuffling back and forth between the two departments multiple times with nothing running all that smoothly. Wednesdays are, according to our anesthesiologist, tough days to meet as they tend to have minimal staff on duty. Since our anesthesiologist was in surgery with a patient (and no extra staff to take over for him) we had to wait until he was done. So we waited in a room for a loooong time - long enough for Julia to make her way to the bottom of my Cheerios bag.
We were still waiting at 2pm for the anesthesiologist so the head nurse said that they had called radiology and we could go see them right away and then come back in time to meet the anesthesiologist.
Okay. Sounds good.
So we head next door to radiology for the ultrasound. We check in and sit in the waiting room for about 45 minutes (I knew better than to believe getting in "right away" meant no waiting). The head nurse from the pre-op area then comes over to us to say that the anesthesiologist is ready to see us. She can't believe we haven't had Julia's head ultrasound yet as she was told we would be seen right away.....my thoughts too, but oh well.
So we head back over to meet the anesthesiologist. A super nice guy, thankfully. We chat a bit and discuss some of the details of Julia's surgery. He explains how ventilation with Apert syndrome kids can be a bit trickier due to their smaller air ways and talks about what steps they take to ensure proper breathing while under the anesthetic. It was comforting to know what he has dealt with this syndrome before so he knew the tricky areas and was prepared.
After leaving the pre-op meeting, we head back over the radiology. Again.
This time, thankfully, we only waited for a couple minutes before being called in. The ultrasound was quick and easy with great results; she has no increase in fluid and no major changes from her last ultrasound (hooray!). By the end of it all we were SO ready to be heading home.
September 10th, 2015. Surgery day.
We had to be at the hospital at 6:45am. It was a bright and early morning for everyone but Abby. She slept peacefully while we made our way into the city and Grandpa sat downstairs quietly drinking his coffee.
Once we arrived, the nurses gave us a cute, little infant size hospital gown to put on Julia.
The anesthesiologist came by and took a look at Julia's legs by ultrasound - her IV was going to be inserted into her saphenous vein (a nice big one in her leg since babies don't exactly have large veins in their feet and they couldn't exactly put an IV in her hand). We kept Julia wrapped in a warm blanket to keep her core temperature up since she would be under the anesthetic for over 2 hours. Then, just before 8am we passed our little girl over to a nurse.
I kept myself together a little better than I had imagined I would. The world got a bit blurry as I watched a strange lady walk my baby girl through those double doors into the unknown. But, I trusted that Julia was in good hands and knew we couldn't do anything more but wait and pray.
Chad and I decided to head to the Starbucks nearby to grab our second coffee of the day. We sat down and recognized three separate parties that we had seen in the waiting area of the surgical area. It gave me a whole new perspective on that area of the hospital. Each time I take Julia for an appointment with the plastic surgeon or the neurosurgeon I walk past that sitting area by Starbucks. I have a deep awareness now that each person I walk by has a story; they are wrestling with emotions and situations that we know nothing about. During Julia's surgery we were the ones sitting on those chairs with a million thoughts, questions, and emotions coursing through our minds. The minutes passed slowly.
The waiting was hard.
We were told to head back to the surgical waiting area by 9:30am just in case the surgery finished early. So we headed back and proceeded to wait for another hour. Doctors were coming out and meeting with other families and giving overviews of how surgery went for their children. Julia's surgery was supposed to finish around 10:10am if all went according to plan, so after that time struck on the clock I started to get a bit nervous. Finally, we saw Dr. Courtemanche come around the corner. He came over and told us that surgery had gone really well; that they had accomplished everything they had wanted to. We would have to wait until Julia came out of the anesthetic but that we would get to see her shortly. Chad and I had a collective sigh of relief. We found out later that they ran a bit late because they had to use the ultrasound machine again in the OR to locate her vein for the IV; a much nicer reason to run late than the scenarios that had previously ran through my mind in that waiting area.
"Everything went really well."
Those sweet, sweet words brought a fresh set of tears to my eyes. Recovery wasn't going to be easy, but the big, scary part was over.
Within 5 minutes we were being called in to go see Julia. She had woken up from the anesthetic really quickly and easily. She was drinking some sugar water from a bottle (she hadn't taken a bottle since her five day stay in the hospital when she was born!!) but was still really groggy. I asked if I could breastfeed her and the nurse was more than happy to help me maneuver a sleepy, bandaged baby. She fed slowly but did well and when she was done she fell asleep in my arms where I was more than happy to let her stay.
Once there was a bed available upstairs we were transported to the room we would stay in overnight. We shared the room with a little boy and his parents. He had had surgery the day before for a g-tube insertion so he was still a little uncomfortable at times but was quite comfortable compared to Julia. I felt bad that we were the noisier of the two but there's only so much you can do. Thankfully, the little boy's parents had shared with me that the previous night had been really rough for them so I knew they understood.
Julia slept once in her bed.
Once. For about 15 minutes.
Other than that, I had to hold her, rock her, nurse her, walk with her. She was clearly uncomfortable but not in agony. We were giving her Tylenol every 6 hours and she even got a shot of codeine at one point. The poor girl just didn't want to be laying down in the bed so I had to hold her. It was the longest night of my life. Chad had gone home in the early afternoon to relieve Grandpa from babysitting so I was alone with a feeling-heavier-by-the-minute Julia. Thankfully, Chad had brought me a sandwich before he left so I finally ate something which made me feel much better.
Chad and Abby stopped by for a quick visit around 7pm which was a nice break and he brought me another sandwich for supper. Chad held Julia and I got to spend a little bit of time with Abby. It's so easy to leave the other children "behind" but we felt that it was good for Abby to feel involved and be a part of it all. We never want Abby to feel that we don't have time for her or that we love Julia more because she requires more of our time during these bouts of hospitalization. So, Abby and I read some stories and took a walk around the ward. We set up my bed for the night and visited with the little boy beside us. It was a bit rough when it was time for Chad and Abby to go. Abby still doesn't quite understand why Mommy can't come home too. So, poor Chad had to carry a screaming toddler to the elevator as she didn't want to leave me. I'm hopeful that as time goes by Abby will come to understand the situation a bit more and won't feel quite as abandoned.
The rest of the evening and night dragged on, and on, and on, and on. I would rock Julia to sleep in my arms and try and transfer her into her bed. That never worked so I resigned to sleeping with her on my little cushions on the floor. Thankfully, I had brought my own pillow so it could have been worse....but it was exhausting. I would wait until she was asleep and then slowly sink down onto the bed with her snuggled in my arm. I would lay on my side facing her with my arm still tucked underneath and it didn't take long for my shoulder and arm to get numb. But, there was no way I was going to jostle her and potentially wake her. So there we "slept." For about 40 minutes at a time, until Julia would wake up again whimpering and crying. I would get up and rock her/nurse her until she calmed down and fell asleep again and we would do it all over again.
Hospitals are just really not conducive to sleep. Julia was hard enough to get to sleep as it was....but we had a little girl, probably 3 years old, in the next room with both her legs and pelvis in a big cast and she wasn't sleeping well either - for obvious reasons. Also, on the other side of us was a patient which I can only describe as needing to be on the psychiatric ward. When a nurse would enter her room to check her vitals she would shriek and scream and swear and rattle her bed railings. At around 3am she carried on for over an hour. There were multiple nurses and doctors inside and outside her room; I'm not sure if she eventually calmed on her own or whether she had a little help from an injection...but hearing only the beeping of hospital machines sounded peaceful in comparison.
By quarter to six I threw in the towel and called it morning time. Shift change for the nurses happened at 7am and not long after we got a visit from a Fellow doctor who had been in Julia's surgery with Dr. Courtemanche. He said we were getting discharged and I was SO happy to be leaving and going home. I was feeling like a zombie and was dreaming of my own bed with no child in my arms. We had to wait a while for paperwork to be filled out but we were allowed to leave by 10am. Chad and Abby came to pick us up and I was so thankful for Chad's extra set of hands. Julia's IV came out, she got out of that little hospital gown, and went into her stroller. We grabbed McDonald's breakfast on the way home and I don't think McDonald's had ever tasted so good!
I was so, so excited to be getting out of there! This was the complaining
face that Julia had been making since waking up from her anesthetic.
She just didn't know she was happy to be leaving, yet.
The moment we got home, Julia was like a whole new child. Her whining stopped and she was genuinely happy. She played in her exersaucer like nothing had ever happened. She had moments of whining which usually coincided with her Tylenol wearing off, but normal (non-codeine) Tylenol every 6 hours was totally manageable for us. She slept in her own crib just like our routine had always been - which was awesome. I was little nervous that our night of "co-sleeping" would throw her off our routine, but it didn't. She still doesn't sleep as well in the night as she did pre-surgery but I have a sneaking suspicion that it as more to do with four pesky teeth coming in all at the same time than it has to do with her hands.
Currently, we have now had two follow-up appointments with Dr. Courtemanche and he is very pleased with how her healing is going. Her skin grafts are "taking" on her hands, and the grafting site on her abdomen is scarring really well.
This past Monday night, Julia got to have her first bath since surgery. We soaked her little hands and abdomen in the bath water and gave her a much needed overall clean. With the help of Chad and his parents I re-bandaged her hands before bringing her in to see Dr. Courtemanche the following morning. He asked us to soak and re-bandage ourselves so that it was easier to remove the bandages. Imagine pulling a Band-Aid off a cut you have where the scab has formed between your skin and the pad of the Band-Aid. It's much easier and much more comfortable to remove the Band-Aid after soaking it in water and softening everything. So, same concept - plus, she was much more relaxed at home compared to when we see the doctor in his office.
Her incision scar is covered in steri strips but a couple fall off
every day now, so it will be exposed shortly.
To date, her grafted skin is now strong enough to withstand the friction of daily life but we are waiting for the stitches to fully dissolve before we uncover them further. A stitch catching on something and pulling would NOT be fun for her so there won't really be much of a reveal for another week. After that, we will have to slightly bandage her hands for another month in order to discourage scar tissue growing and creeping up into the web spaces between her fingers.
The recovery for her surgery seems more minor and more extensive to me than I had first imagined. She was in pain/discomfort for such a minimal amount of time, yet we will be actually managing the healing aspect for a bit longer than I had thought. We had been told that it would take about 6 weeks total for healing, but I hadn't really thought about the ongoing bandaging required at home. So, today we added to the items we have in our home medical kit in order to take care of our little one's new digits. I have decided that coming from a medically inclined family is quite a blessing! I feel like I am learning so much, but I know that I have a pretty great base knowledge compared to some people - and for that I am thankful.
We are also so, SO very thankful. Grateful. Humbled. by all the love, prayer, and support we have received. We cannot even begin to explain how much comfort you have all brought to us during this time. Prayers have most definitely been answered and love has been felt pouring in from all over the world.
Thank you.
Thank you.
Thank you!
And just when you thought "Oh good, I'm glad Julia is healing well and they can see the light at the end of the tunnel...." we have another update. Julia is already set for her next surgery. Her cranial surgery is penciled in for November 27th, 2015. Two months from now. We knew it was coming but hadn't really mentally prepared for them to be so close together. This surgery is a much longer, more invasive procedure, but I'll get into the details of that on another day.
Wow! What a strong girl! I love that last picture of her with the purple mittens. So cute!
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