So I went to my OB/GYN today and she has given me some med's to help tighten up my uterus; granted not what she wanted to give my because my stupid high blood pressure limits what I can take. That, and she wants me to rest with my feet up as much as possible. That sounds great in theory, but I have a real hard time sitting with my feet up at home while my baby is in the hospital. Thank goodness for all the help that I have been getting because I don't know how I would have done the basic things like eat and do laundry.
One of the interesting things from today was that the OB has a 22q patient who is in her 20's, is married and doing wonderful and is going to start a family. This is one of the things that I worry about for Riley -- granted this is a long way off in the future, but I am a mom, so I worry none-the-less. This patient & her husband are doing IVF so that they can genetically test the embryo's for 22q prior to implantation. That is the technology of today, I can only imagine what will be possible in 25-30 years from now. It made me feel good to think of my little girl having an normal adulthood with all of the things that a mom could want for her. These are things I didn't worry about for Zoey, it was just assumed that when she was grown up & ready to start a family that there would be no major issues.
Riley is healing great and the doctor's & nurses have high hopes of her being able to come home sooner than later. Now Josh & I just have to prepare ourselves for that reality. We have so much to learn on how to care for Riley at home. How to feed her, how to give her medications, how to bath her, how to hold her, all those basics that I always took for granted. I am sooooo looking forward to learning all of that with her and getting her out of the hospital so that she can really start her life.
This is a video that Josh took earlier tonight at the hospital:
Friday, October 29, 2010
10-29-10 The Day After
So rereading my post and then my wife's post today I was struck by their accuracy, but also how they aren't anywhere close to the feelings that were with me during the moments after surgery. It was horrendous and I could only look at my little one for around 10 minutes at a time before crying. The good news, was it all went great - she had the breathing tube taken out at 3pm (which was early according to the nurses). She started to get medicine in her feeding tube early this morning and she started feeding through it around 1pm today. For the first time in her short life (except for a very short time after she came out) my littlest one has no tubes in her nose or mouth!!!! She is phenomenally happy about it too.
I could not be happier about this for my girl. However Children's Hospital has been an experience that has changed me for the rest of my life. Michele and I have been giving $21/month for about the last 6 years to the Angel Fund here at CHOA due to a story about a mother who had her 2-3 month old out in a courtyard down here at the hospital during a rain storm. A woman asked her what she was doing outside with here baby - the mother replied that the doctors didn't think she was going to make it much longer and her baby (who had never been outside of a hospital since she was born) had never felt rain on her face. The mother couldn't understand how something so precious was going to pass from this world without ever having experienced that. That story got to me and still does, but I didn't get it until I was here.
In the Cardiac ICU there are around 60 children from age 0-4 who all are having some sort of serious heart issues or surgeries that could severly impact their heart function. Last night there was a little boy across from Riley's area who I did not think was going to make it till today. They worked on him from 4pm - 7pm; between drugs for his heart and breathing aparatus it was constant movement around him. He has been here for weeks and his mother sits with him most of every day wondering if this is the last breath her bay will take. Diagonally across from Riley there was a 3 year old boy who had surgery yesterday and when he came back from surgery his parents were here, but he was out of it. When I was with Riley around 4pm - he truly kind of woke up and mom and dad had gone somewhere for their older child - he started crying and screaming for his mom and dad. He wanted something to drink, but couldn't due to the surgery. The nurses tried with all of their special tricks to soothe him, but nothing calmed him down till about an hour later when his parents were finally able to get here. The boy is 3 - I remember things when I was 3; stupid things that impacted me like the first time I remember riding a train or holding a bunny rabbit, this little boy will forever remember waking up from heart surgery and his mom and dad not being there. There are multiple floors and multiple wings of this single surgical hospital.
The people here are wonderful not only in their technical skills, but in their spirit and caring. But even they lose children. I'm not a pixie dust sort of person - I know that children die every minute of every day of every year, but to watch it happen changes what you feel about life and where we fit. My little one is going to go home in days, she is going to snuggle up with mom and dad, she is going to dance with her big sister, she is going to feel rain on her face - so many children won't ever go out the doors again. Michele and I thank you from the bottom of our hearts for all the time and energy that have been put in to thoughts for Riley and us - I ask you that while she is doing good today, please take a second and think of the thousands of other kids here in this building that I am in today who need our thoughts. Every one of them should have the chance to feel the rain on their faces.
I could not be happier about this for my girl. However Children's Hospital has been an experience that has changed me for the rest of my life. Michele and I have been giving $21/month for about the last 6 years to the Angel Fund here at CHOA due to a story about a mother who had her 2-3 month old out in a courtyard down here at the hospital during a rain storm. A woman asked her what she was doing outside with here baby - the mother replied that the doctors didn't think she was going to make it much longer and her baby (who had never been outside of a hospital since she was born) had never felt rain on her face. The mother couldn't understand how something so precious was going to pass from this world without ever having experienced that. That story got to me and still does, but I didn't get it until I was here.
In the Cardiac ICU there are around 60 children from age 0-4 who all are having some sort of serious heart issues or surgeries that could severly impact their heart function. Last night there was a little boy across from Riley's area who I did not think was going to make it till today. They worked on him from 4pm - 7pm; between drugs for his heart and breathing aparatus it was constant movement around him. He has been here for weeks and his mother sits with him most of every day wondering if this is the last breath her bay will take. Diagonally across from Riley there was a 3 year old boy who had surgery yesterday and when he came back from surgery his parents were here, but he was out of it. When I was with Riley around 4pm - he truly kind of woke up and mom and dad had gone somewhere for their older child - he started crying and screaming for his mom and dad. He wanted something to drink, but couldn't due to the surgery. The nurses tried with all of their special tricks to soothe him, but nothing calmed him down till about an hour later when his parents were finally able to get here. The boy is 3 - I remember things when I was 3; stupid things that impacted me like the first time I remember riding a train or holding a bunny rabbit, this little boy will forever remember waking up from heart surgery and his mom and dad not being there. There are multiple floors and multiple wings of this single surgical hospital.
The people here are wonderful not only in their technical skills, but in their spirit and caring. But even they lose children. I'm not a pixie dust sort of person - I know that children die every minute of every day of every year, but to watch it happen changes what you feel about life and where we fit. My little one is going to go home in days, she is going to snuggle up with mom and dad, she is going to dance with her big sister, she is going to feel rain on her face - so many children won't ever go out the doors again. Michele and I thank you from the bottom of our hearts for all the time and energy that have been put in to thoughts for Riley and us - I ask you that while she is doing good today, please take a second and think of the thousands of other kids here in this building that I am in today who need our thoughts. Every one of them should have the chance to feel the rain on their faces.
10/29/10 - 9:30 am
Josh went to Egleston this morning before worked and shared this picture with me:
Riley's nurses got her a teddy bear and she was sleeping so peacefully snuggled up with her bear. I am hoping that when I get to the hospital we will continue to see improvements and get closer to moving her back to Northside.
Riley's nurses got her a teddy bear and she was sleeping so peacefully snuggled up with her bear. I am hoping that when I get to the hospital we will continue to see improvements and get closer to moving her back to Northside.
Yesterday
Yesterday was one of the hardest days I have ever lived through. Mentally I was prepared for surgery day, but emotionally, not even close. I know Josh shared his take on the aftermath of Riley's surgery, but here is mine:
It was AWFUL. There is no other way to put it. I'd been up since 4:30 am so that we could get down to Egleston by 6:00 am to spend some time with our baby, so I was exhausted physically as well as mentally. Riley was sleeping so peacefully when we got there, and they started the surgery basically when they said they would. Even with the delay to start due to anesthesia, Dr. Wulkan made up the difference. What was the awful part was going in to see my baby after the fact.
Every part of Riley was hooked up to something. She had her O2 monitor on one foot, and IV in the other. One had had a 2nd IV and the other hand was being given blood. She had a monitor on her head to measure O2 in her brain, a breathing tube taped in her mouth and vital monitors secured to her chest. Blood was running from her new g-tube and staining the blanket underneath her. Tears were running out of her glazed over eyes. NOTHING in the world could have prepared me for that, and this was the easy surgery. How on Earth am I going to make it through heart surgery????? I honestly thought I was going to throw up right there in the CICU purely from the stress of it all.
My girl is a tough one though, she was breathing along with the tube and eventually came off it (sooner than later too). Through the night, they only had to give her 2 doses of Morphine, even though she was allowed a dose every 2 hours. She must have mommy's high tolerance for pain. Riley has been through so much in her short little life and her personality has been amazing through everything. If this is any indiction as to the person she is going to be, I am beyond impressed. Yes, I know that as her mom I am biased, but she is amazing to me.
It was AWFUL. There is no other way to put it. I'd been up since 4:30 am so that we could get down to Egleston by 6:00 am to spend some time with our baby, so I was exhausted physically as well as mentally. Riley was sleeping so peacefully when we got there, and they started the surgery basically when they said they would. Even with the delay to start due to anesthesia, Dr. Wulkan made up the difference. What was the awful part was going in to see my baby after the fact.
Every part of Riley was hooked up to something. She had her O2 monitor on one foot, and IV in the other. One had had a 2nd IV and the other hand was being given blood. She had a monitor on her head to measure O2 in her brain, a breathing tube taped in her mouth and vital monitors secured to her chest. Blood was running from her new g-tube and staining the blanket underneath her. Tears were running out of her glazed over eyes. NOTHING in the world could have prepared me for that, and this was the easy surgery. How on Earth am I going to make it through heart surgery????? I honestly thought I was going to throw up right there in the CICU purely from the stress of it all.
My girl is a tough one though, she was breathing along with the tube and eventually came off it (sooner than later too). Through the night, they only had to give her 2 doses of Morphine, even though she was allowed a dose every 2 hours. She must have mommy's high tolerance for pain. Riley has been through so much in her short little life and her personality has been amazing through everything. If this is any indiction as to the person she is going to be, I am beyond impressed. Yes, I know that as her mom I am biased, but she is amazing to me.
Thursday, October 28, 2010
10-28-10 2pm
So even though we asked hundreds of questions and had lots of doctors and nurses telling us what was going to happen, we were unprepared for what seeing Riley after surgery was going to be like. We understood that she was going to be out for the rest of the day and possibly evening. Well what they meant was that she was going to have pain medication because when we went in to see her she was waking up. Not only were her eyes open, but you could tell that she was scared due to her increased heart rate and her eyes going wide. She was also bleeding from the area of the feeding tube - again supposedly normal, but we didn't know that and when you see a new recently cut area of your 3 week old bleeding - your instinct is not a good one.
This is all supposedly good as she is waking up and not going to be needing the vent, but Michele and I were grossly unprepared for this and both had our own minibreakdowns. Our nurses were phenomenal though - they apologized profusely for not preparing us and then have spent the last hour or so answering questions. According to them every baby is different, some sleep all day with the breathing aparatus in others are waking up right away - like Riley. Again, this is a good sign supposedly as it means she will be coming off the ventilator sooner rather then later. This is such a good sign that they will try doing some feedings through her tube tomorrow morning and if things go well - they may transfer us back to Northside tomorrow night now. When she does have these waking up scared fits (about every 5 minutes) she seems to calm to my voice and holding her head, so at least we feel like we are doing something. I am sure that I have said it before in the last 3 weeks, but the first 40 minutes with my newborn after her surgery today was the worst moment of my life. Feeling unprepared, unknowledgeable and unable to do anything about it led to this and makes me realize I am just going to have to ask more questions and do more reading so Michele and I never have to do that again.
I finally had to tell Michele to leave though - she is not in a good way today physically and emotinally. So our very good friend Dawn was wonderful enough to come get her and take her home. I wish I had been able to take her home, but until my child stops looking like a cyborg and waking up every 5 minutes and freaking out.with a look of terror in her eyes I can't leave her here by herself. Michele will be sleeping at home shortly and hopefully that will help her and I can focus on one Jacobs' woman's health instead of two.
This is all supposedly good as she is waking up and not going to be needing the vent, but Michele and I were grossly unprepared for this and both had our own minibreakdowns. Our nurses were phenomenal though - they apologized profusely for not preparing us and then have spent the last hour or so answering questions. According to them every baby is different, some sleep all day with the breathing aparatus in others are waking up right away - like Riley. Again, this is a good sign supposedly as it means she will be coming off the ventilator sooner rather then later. This is such a good sign that they will try doing some feedings through her tube tomorrow morning and if things go well - they may transfer us back to Northside tomorrow night now. When she does have these waking up scared fits (about every 5 minutes) she seems to calm to my voice and holding her head, so at least we feel like we are doing something. I am sure that I have said it before in the last 3 weeks, but the first 40 minutes with my newborn after her surgery today was the worst moment of my life. Feeling unprepared, unknowledgeable and unable to do anything about it led to this and makes me realize I am just going to have to ask more questions and do more reading so Michele and I never have to do that again.
I finally had to tell Michele to leave though - she is not in a good way today physically and emotinally. So our very good friend Dawn was wonderful enough to come get her and take her home. I wish I had been able to take her home, but until my child stops looking like a cyborg and waking up every 5 minutes and freaking out.with a look of terror in her eyes I can't leave her here by herself. Michele will be sleeping at home shortly and hopefully that will help her and I can focus on one Jacobs' woman's health instead of two.
10-28-10 11am DR WULKAN IS THE MAN!!!!!
So as Michele said, the anesthesia took a little longer due to her size and cardiac issues, but she got through it fine. Dr. Wulkan walked out to find us in the waiting area and he looked at us and said - 'She's done - 33 minutes.' This after telling us the surgery takes 1 hour 15 minutes this morning. He under promised and over delivered by leaps and bounds. He said that she did great - no cardiac incidents during surgery and her two procedures (which I will now refer to as a tube and tighten) are done. We will be going up to see her in a couple of minutes. Mom and I are elated as are the grandparents. Michele is having a tough day physically and emotionally so after we see our little one I will probably take her home to rest. We will update later today or maye tomorrow with anything new.
Thank you all again for the wonderful notes/emails/thoughts that we received this morning alone. We will need them again in the future, but for the rest of today I would ask you to focus your good thoughts on the hundreds of other children that I have seen in the past day and a half here. Some who need so much more then our little flower does. Children shouldn't ever be made to go through what these kids here are going through, but this place is an oasis for them, when they can enjoy it and almost everyone here is a person that has a special place in my heart for the job that they do every single day.
Thank you all again for the wonderful notes/emails/thoughts that we received this morning alone. We will need them again in the future, but for the rest of today I would ask you to focus your good thoughts on the hundreds of other children that I have seen in the past day and a half here. Some who need so much more then our little flower does. Children shouldn't ever be made to go through what these kids here are going through, but this place is an oasis for them, when they can enjoy it and almost everyone here is a person that has a special place in my heart for the job that they do every single day.
Surgery Update
So at 10:00 am we got a phone call her in the CICU Waiting Room from nurse Jackie to let us know that due to the fact that Riley is a cardiac patient and her size & age, getting the IV and central lines put in her arms took longer than they'd anticipated, so surgery only just began at 10:00 am vs the 9:30 am we'd been thinking. Hopefully we will have more news closer to 11:00 am.
10/28/10 - 9:30 am
Well, it's surgery day. Josh & I left our house at 5:30 am to head over to Egleston to visit with Riley before her surgery this morning. Under normal circumstances, the CICU is closed to visitors from 6:30 am to 10:00 am every monrning for shift change and doctor's rounds. As today was a "special" day, we were allowed to stay at Riley's bedside in case any doctor's wandered by. In fact, Dr. Wulkan specifically stopped by to say hello and to see if we had any additional questions about Riley's surgery.
Our sweet girl was sleeping so soundly on her tummy, and her night nurse, Rachel, even requisitioned her a CD player so that she had some nice calm classical music to sleep to. We only got a few moments of eyes barely opened, but our girl needs her sleep, so we weren't going to be the ones to wake her up. She did left her head several times and even changed the side her head was facing in order to get more comfortable.
Around 8:00 am, one of the surgical nurses came down to fetch Riley. We were allowed to accompany Riley to the 3rd floor where the operating rooms are located. I think we were doing okay, until the anesthesiologist came out and that just made it all that more real. It will take about 1/2 an hour for them to get Riley situated and sedated for the surgery, then the actual surgery will take approximately 1 1/2 hours. The surgical nurses who came out to greet us seemed to know how we were feeling, as I am sure that they encounter frightened parents every day. They promised to take care of our girl for us.
Riley will be getting a breathing tube for the operation and they plan on keeping that in for the day, and maybe the night. I think it was that bit of information that pushed me over the edge, as I had no clue a machine would be breathing for my tiny baby during this process. It absolutely breaks my heart that at 3 weeks old, Riley needs to have surgery. Not that her being any older would make any difference ... it just sucks that she had to go through all of this. The doctor's have assured me that Riley will be sedated and not aware of the tube and that she will be given pain medications to help her into recovery.
As for me, physically I am not doing so great. I am in some pain and the Percocet makes me feels sick, so I have been avoiding taking that unless absolutely necessary. I am still bleeding, with out any end in sight. This morning was especially rough and the bleeding seems to be increasing instead of decreasing as one would expect it would at 3 weeks postpartum. Josh is on me about my health like white on rice, so he insisted that I call my OB/GYN and schedule a check up. So, I will be going in tomorrow, and I fully expect them to tell me that everything is normal, just that I am going through a terrible experience and have not had a chance to recover as I would have if circumstances were different.
Our sweet girl was sleeping so soundly on her tummy, and her night nurse, Rachel, even requisitioned her a CD player so that she had some nice calm classical music to sleep to. We only got a few moments of eyes barely opened, but our girl needs her sleep, so we weren't going to be the ones to wake her up. She did left her head several times and even changed the side her head was facing in order to get more comfortable.
Around 8:00 am, one of the surgical nurses came down to fetch Riley. We were allowed to accompany Riley to the 3rd floor where the operating rooms are located. I think we were doing okay, until the anesthesiologist came out and that just made it all that more real. It will take about 1/2 an hour for them to get Riley situated and sedated for the surgery, then the actual surgery will take approximately 1 1/2 hours. The surgical nurses who came out to greet us seemed to know how we were feeling, as I am sure that they encounter frightened parents every day. They promised to take care of our girl for us.
Riley will be getting a breathing tube for the operation and they plan on keeping that in for the day, and maybe the night. I think it was that bit of information that pushed me over the edge, as I had no clue a machine would be breathing for my tiny baby during this process. It absolutely breaks my heart that at 3 weeks old, Riley needs to have surgery. Not that her being any older would make any difference ... it just sucks that she had to go through all of this. The doctor's have assured me that Riley will be sedated and not aware of the tube and that she will be given pain medications to help her into recovery.
As for me, physically I am not doing so great. I am in some pain and the Percocet makes me feels sick, so I have been avoiding taking that unless absolutely necessary. I am still bleeding, with out any end in sight. This morning was especially rough and the bleeding seems to be increasing instead of decreasing as one would expect it would at 3 weeks postpartum. Josh is on me about my health like white on rice, so he insisted that I call my OB/GYN and schedule a check up. So, I will be going in tomorrow, and I fully expect them to tell me that everything is normal, just that I am going through a terrible experience and have not had a chance to recover as I would have if circumstances were different.
Wednesday, October 27, 2010
10-27-10 8pm
So for anyone that has spent even a small amount of time with my wife and I am sure that my next sentence won't come as any big shock, but for some reason it does to me.
I can not believe how different my wonderful wife and I are. With Riley going in to surgery tomorrow I am absolutely 100% confident that this is going to work and we are in the best of care and that this particular issue will be fixed - I am by no means saying I am happy about it, but completely confident due to lots of questions and research. Michele is heartbroken about the surgery and that our little one has to go through it at all. On the other hand I broke down today in the hospital due to Riley's future. We were eating in the cafeteria around a number of families and some of them had children who had disabilities - both mental and physical. I barely made it through lunch without bawling my eyes out due to the fact that all I could think about was the difficult life that my little one could have ahead of her if she has mental issues or physical malformations. My wife consoled me as I wept and assured me that we were both strong enough to get her thru and to that future.
See I am a die hard belief in science person. I am a scientist at heart and when there is lots of medical evidence, it's something I can learn and touch and almost feel. Therefore that knowledge consoles me and makes me feel almost good that there is something to fix through surgery (I know that sounds awful, but please focus on the word fix and know that I would never want my daughter to have to go through something unnecessary). My wife isn't necessarily scared of that, but she can't feel the scientific reasoning behind like I do. On the other hand - when it comes to mental handicaps and learning disabilities, those are phenomenally 'squishy' things that science barely understands and no amount of surgery or learning can fix. These unknowns and 'squishy' things bring out my fears in my ability to be anyone's father - let alone a little flower like Riley that may have multiples of these issues. I wouldn't say that Michele is comfortable there, but she is confident in that future if it presents itself. She feels that these can be overcome with work.
This is why we are perfect for each other always, but especially now. I am confident when Riley is in the today of science and doctor's; Michele is confident in our abilities to get our daughter through the possible haze of tomorrow. Between the two of us we will hopefully be able to hold up to anything that this awful syndrome can throw at us.
I promise that I won't get to preachy on this thing in the coming years, but I thought the following might be interesting to some. Ryan Dempster, a major league pitcher for the Chicago Cubs had a daughter about a year and a half ago named Riley and she has 22q as well. He and his wife have started a foundation: http://www.dempsterfamilyfoundation.org/
It is a great website with lots of information and stories from a number of families that has brought Michele and I hope and ideas. Anyway, they will be having an event here in Georgia next month - which is wow, next Friday: http://new.evite.com/?utm_source=other_email&utm_medium=email&utm_content=text&utm_campaign=invite#view_invite:eid=016FAAQZXGK5ZYRWMEO7ZMQMD2Z56Q&gid=016FAAQZXGL24EX3GEO7ZMQMM6EM4Q
Michele and I may be going to this, just to meet some other families who have fought against this syndrome and hopefully gain some perspective and courage. Hopefully in the future we may be able to do something like this for the center in Riley Rose's name.
Thank you again for all the notes of encouragement and offers of help - I can't really explain how much the notes help Michele and I. Your love and support has been and will continue to be invaluable to our little flower and us.
I can not believe how different my wonderful wife and I are. With Riley going in to surgery tomorrow I am absolutely 100% confident that this is going to work and we are in the best of care and that this particular issue will be fixed - I am by no means saying I am happy about it, but completely confident due to lots of questions and research. Michele is heartbroken about the surgery and that our little one has to go through it at all. On the other hand I broke down today in the hospital due to Riley's future. We were eating in the cafeteria around a number of families and some of them had children who had disabilities - both mental and physical. I barely made it through lunch without bawling my eyes out due to the fact that all I could think about was the difficult life that my little one could have ahead of her if she has mental issues or physical malformations. My wife consoled me as I wept and assured me that we were both strong enough to get her thru and to that future.
See I am a die hard belief in science person. I am a scientist at heart and when there is lots of medical evidence, it's something I can learn and touch and almost feel. Therefore that knowledge consoles me and makes me feel almost good that there is something to fix through surgery (I know that sounds awful, but please focus on the word fix and know that I would never want my daughter to have to go through something unnecessary). My wife isn't necessarily scared of that, but she can't feel the scientific reasoning behind like I do. On the other hand - when it comes to mental handicaps and learning disabilities, those are phenomenally 'squishy' things that science barely understands and no amount of surgery or learning can fix. These unknowns and 'squishy' things bring out my fears in my ability to be anyone's father - let alone a little flower like Riley that may have multiples of these issues. I wouldn't say that Michele is comfortable there, but she is confident in that future if it presents itself. She feels that these can be overcome with work.
This is why we are perfect for each other always, but especially now. I am confident when Riley is in the today of science and doctor's; Michele is confident in our abilities to get our daughter through the possible haze of tomorrow. Between the two of us we will hopefully be able to hold up to anything that this awful syndrome can throw at us.
I promise that I won't get to preachy on this thing in the coming years, but I thought the following might be interesting to some. Ryan Dempster, a major league pitcher for the Chicago Cubs had a daughter about a year and a half ago named Riley and she has 22q as well. He and his wife have started a foundation: http://www.dempsterfamilyfoundation.org/
It is a great website with lots of information and stories from a number of families that has brought Michele and I hope and ideas. Anyway, they will be having an event here in Georgia next month - which is wow, next Friday: http://new.evite.com/?utm_source=other_email&utm_medium=email&utm_content=text&utm_campaign=invite#view_invite:eid=016FAAQZXGK5ZYRWMEO7ZMQMD2Z56Q&gid=016FAAQZXGL24EX3GEO7ZMQMM6EM4Q
Michele and I may be going to this, just to meet some other families who have fought against this syndrome and hopefully gain some perspective and courage. Hopefully in the future we may be able to do something like this for the center in Riley Rose's name.
Thank you again for all the notes of encouragement and offers of help - I can't really explain how much the notes help Michele and I. Your love and support has been and will continue to be invaluable to our little flower and us.
10/27/10 - 2:30 pm
Today is Riley's due date.
We started our morning off at Northside loving on Riley and waiting to hear about her transport to Egleston. Finally we got the call that they were on their way and would be to us in about 45 minutes. They arrived looking like the SWAT version of hospital transportation people. Mark, David, Julie & Jason got Riley untethered from her cords and wires and moved into a warm & cozy isolete for her big move. Today, after 20 days in Northside, Riley would be going outside for the first time. I got to ride along in the ambulance while Josh gathered all of the stuff we'd accumulated during our stay in N4 so that he could drive over and meet us at Egleston.
The ride over went nice and smooth ... Riley slept through the whole thing! We arrived at the hospital and made our way to the Cardiac Intensive Care Unit (CICU) where Riley will be staying during her time here at Egleston. I left her to the care of her nurses and went down to Admissions where I had to sign some new paperwork. I've lost count of how many forms I have signed in the last few weeks. We had to sit around and wait while they got Riley settled in. This place is Huge! There are so many facilities for the families ... work out room, library, office centers, you name it. As nice as Egleston is, and I'm sure we'll be happy here when heart surgery time comes around, I think Josh & I are both already missing the comfort of the familiarity of Northside SCN. After 3 weeks, we know exactly what to do there. We know the doctors that have been taking care of our girl. We know the nurses and their routines. We know where to find everything and had settled in nicely to our semi-private space there. Here, we are strangers in a strange land. While a lot of things are the same, the overall feel is completely foreign.
We meet with Amar, who will be on the surgical team with Dr. Wulkan tomorrow. Amar went through the process of inserting the g-tube, and what it will look on her skin. He explained the Fundiflication (not sure if I spelled that correctly or not). Basically what will happen is that they will actually fold over the top part of Riley's stomach and wrap it around the bottom of her esophogus to create a tighter area which will help to reduce the reflux. This will be done lapriscopically (again, not sure if the spelling is correct), so Riley will only have 3 tiny incisions. They feel that infants actually heal faster than adults ... I can only hope that is accurate information. The surgery should take about 1 hour and 15 minutes for both procedures. We are still not sure what time the surgery will be, but have been assured that we will know by the end of the day.
Right now we are waiting again to be able to see Riley. When ever a surgical patient is being transported, parents must vacate the CICU. Again that is one the downsides here. They close the CICU during shift changes, and Zoey won't be able to visit her sister here either
We started our morning off at Northside loving on Riley and waiting to hear about her transport to Egleston. Finally we got the call that they were on their way and would be to us in about 45 minutes. They arrived looking like the SWAT version of hospital transportation people. Mark, David, Julie & Jason got Riley untethered from her cords and wires and moved into a warm & cozy isolete for her big move. Today, after 20 days in Northside, Riley would be going outside for the first time. I got to ride along in the ambulance while Josh gathered all of the stuff we'd accumulated during our stay in N4 so that he could drive over and meet us at Egleston.
The ride over went nice and smooth ... Riley slept through the whole thing! We arrived at the hospital and made our way to the Cardiac Intensive Care Unit (CICU) where Riley will be staying during her time here at Egleston. I left her to the care of her nurses and went down to Admissions where I had to sign some new paperwork. I've lost count of how many forms I have signed in the last few weeks. We had to sit around and wait while they got Riley settled in. This place is Huge! There are so many facilities for the families ... work out room, library, office centers, you name it. As nice as Egleston is, and I'm sure we'll be happy here when heart surgery time comes around, I think Josh & I are both already missing the comfort of the familiarity of Northside SCN. After 3 weeks, we know exactly what to do there. We know the doctors that have been taking care of our girl. We know the nurses and their routines. We know where to find everything and had settled in nicely to our semi-private space there. Here, we are strangers in a strange land. While a lot of things are the same, the overall feel is completely foreign.
We meet with Amar, who will be on the surgical team with Dr. Wulkan tomorrow. Amar went through the process of inserting the g-tube, and what it will look on her skin. He explained the Fundiflication (not sure if I spelled that correctly or not). Basically what will happen is that they will actually fold over the top part of Riley's stomach and wrap it around the bottom of her esophogus to create a tighter area which will help to reduce the reflux. This will be done lapriscopically (again, not sure if the spelling is correct), so Riley will only have 3 tiny incisions. They feel that infants actually heal faster than adults ... I can only hope that is accurate information. The surgery should take about 1 hour and 15 minutes for both procedures. We are still not sure what time the surgery will be, but have been assured that we will know by the end of the day.
Right now we are waiting again to be able to see Riley. When ever a surgical patient is being transported, parents must vacate the CICU. Again that is one the downsides here. They close the CICU during shift changes, and Zoey won't be able to visit her sister here either
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