So the g-tube guy got here at 11:15 am for our 10:00 am appointment. Good thing we didn't have anything to do but sit around & wait for him. He showed us how to operate the pump and associated equipment. Thank goodness it is very simple ... so easy a Caveman could do it. We even have a little back pack to hold everything if we need to be mobile.
Now we need to get the training from the nurse on how to handle the Riley part of the feeding. That's where we need the real help. Evidently there is a slim chance of the g-tube coming out, but they have assured us that we, yes Josh & I, will be able to put a new one in. I find that a little freaky, but I'll have to believe them on that.
We are now one step closer to bringing Riley home with our necessary training. Infant CPR - check. Feeding pump training - check.
Sunday, October 31, 2010
10/31/10 - 10:45 am
So, Riley is having a breathing treatment right now with the Respitory Therarist right now which will hopefully help to dry out some of the mucus in her nose & throat.
She looks absoluely precious in her ghost costume, it's just too bad that she can't go trick or treating yet, but Zoey is already planning on her & Riley both being witches next year
She looks absoluely precious in her ghost costume, it's just too bad that she can't go trick or treating yet, but Zoey is already planning on her & Riley both being witches next year
10-31-10 8:30am
So I just talked with the nurse who finally got Riley into a pretty sound sleep this morning (around 6:50am). She feels it may just be some really bad gas and her tube may not have been venting right - it makes sense with the vegeling as well. She might have been trying to get it out of her body and it just wasn't happening. Now for something I never thought I would say - let's hope my daughter has some bad gas - and not some severe cold that has to be monitored closely.
10-31-10 5:15am
So Riley is doing something called vageling - when she is moving her bowels, trying to get mucus out of her little body, or just cranky she basically is clamping down her whole body. This isn't good as it normally means she isn't breathing, but most of us do it at one time or another. Also, she has a lot of mucus so they have taken a culture of it and sent it down to the lab to be checked for RSV. It is phenomenally common in adults and healthy older children, but in very young babies it can be pretty nasty - so they want to catch it early. This would certainly delay her coming home.
10-31-10 2:30am
So they have taken Riley to the nurses station to observe her as what I am describing her doing she isn't doing once all the nurses get in here. It has been every hour or 40 minutes now for about 6 hours that she loses her little mind and she can't really get any good sleep.
10-31-10 1:15am Happy Halloween!!!
So I am getting to spend the first full night with my daughter since she has been born. While certainly wonderful to see her, I am working on about 20 minutes of sleep so far as every little cough or whimper from her leads me to believe that she is in distress. I'm worried that we are going to have difficulties at home with telling a cry from a 'I'm in Trouble' cry. She even got to the point tonight where I asked for the doctor to come take a look at her due to her being inconsolable (which is not anywhere in her personality so far) - the doctor and the nurse explained to me that she may be feeling the surgery and new sensatoins fully now since they have essentially weened her off the pain medicine. So I will go back to my little flower now and try to get some sleep with one eye open.
Saturday, October 30, 2010
10/30/10 - 9:45 pm
I am amazed that I can finally start to think about bringing my daughter home realistically now. I am excited to think about what she will be dressed in, and how I will bring her home in the blanket I crocheted for her before she was even born. It's finally started to be more real and I know that I still have so much that I need to get done in preparation for her homecoming. Thank goodness for my mom & sister being here to help since I am technically supposed to be on bed rest. I'm trying, I swear! But it's very had to comply with.
Thank you, thank you for all the prayers and good thoughts sent Riley's way. It amazing to know how much she is loved already.
Thank you, thank you for all the prayers and good thoughts sent Riley's way. It amazing to know how much she is loved already.
10-30-10 4pm WOW
OK - so the doctors, nurses and Michele and I had a nice discussion around 12:30pm about Riley's future and they all feel that she will be going home on Tuesday, so Michele and I elected to ask for her to stay here. They admitted that someone should have told us about the later rounds time yesterday and when I tried to apologize for my frustration, they wouldn't let me - they really are all phenomenal at what they do.
So Michele and I are going to need to start training on the tube/feeding/taking care of our newest daughter. We also will be seeing an immunologist to make sure that her immunities are good. She will go home on calcium supplements to make sure that she keeps good levels - this is for her heart issue as well as preventing skeletal malformation and seizures.
This step down area is wonderful. We have a private room, with a shower, bathroom, a couch/bed, chair and desk. The folks over here have been wonderful. Just while I was typing this, we have met with the head immunologist who also happens to run the Southwest Center of Excellence for 22q. It looks as though we will possibly be going home on Monday if things keep going good. Also while typing we just heard from the home pump people and they are going to bring all our equipment and train us here in the hospital tomorrow at 10am.
So Michele and I are going to need to start training on the tube/feeding/taking care of our newest daughter. We also will be seeing an immunologist to make sure that her immunities are good. She will go home on calcium supplements to make sure that she keeps good levels - this is for her heart issue as well as preventing skeletal malformation and seizures.
This step down area is wonderful. We have a private room, with a shower, bathroom, a couch/bed, chair and desk. The folks over here have been wonderful. Just while I was typing this, we have met with the head immunologist who also happens to run the Southwest Center of Excellence for 22q. It looks as though we will possibly be going home on Monday if things keep going good. Also while typing we just heard from the home pump people and they are going to bring all our equipment and train us here in the hospital tomorrow at 10am.
10-30-10 12pm FRUSTRATION!!!!
So I have reached a frustration point for the first time with the administration of my child. While CHOA is a wonderous place that so many people have given so much of their time and energy to - they are some of the worst communicators on the planet. Just for the record it is not just us, almost every parent we run in to talks about not getting the information that we need.
A very quick recap:
According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.
Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.
Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.
Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.
So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.
I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.
A very quick recap:
According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.
Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.
Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.
Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.
So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.
I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.
Friday, October 29, 2010
10/29/10 - 7:30 pm
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:
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:
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
Tuesday, October 26, 2010
10/26/10 - 7:00 pm
I spent some time earlier today with Riley and my mom at the hospital. It's so nice to walk into her cubicle in the NICU and see her bright eyes open wide and looking right at me. Granted, I'm convinced that Riley saves up her poops until I get there, but that is okay, I'm a poop-changing professional now.
Riley's nurse and case worker got the confirmation call today that she will be transported to Egleston tomorrow. They will run a series of blood work and scans as part of her pre-op admission. Thursday will be the big day ... Surgery Day (well the first of at least 2 and maybe three Surgery Days). They are anticipating that Riley will be moved back to Northside by Saturday depending on how well she does with her surgery & recovery. It will be nice to be back in a hospital that we now know like the back of our hands. Heck, I've been giving out directions to lost looking relatives. The only thing we don't know are times ... when they are going to pick her up ... what time the surgery will be. I guess we will find out all in good time. Evidently it is quite common for the transport team to call and say, "oh, we're on our way"
Tomorrow will be a day of hurry up and wait for Josh & I. Luckily Josh will be telecommuting from the hospitals tomorrow and Thursday so that we can wait around for all those particulars. Luckily I am working on a new blanket for Riley, so this will give me plenty of time to work on it and to get reading my next book club book as I am confident that Riley will be a-okay and I will be able to enjoy a night out.
Riley's nurse and case worker got the confirmation call today that she will be transported to Egleston tomorrow. They will run a series of blood work and scans as part of her pre-op admission. Thursday will be the big day ... Surgery Day (well the first of at least 2 and maybe three Surgery Days). They are anticipating that Riley will be moved back to Northside by Saturday depending on how well she does with her surgery & recovery. It will be nice to be back in a hospital that we now know like the back of our hands. Heck, I've been giving out directions to lost looking relatives. The only thing we don't know are times ... when they are going to pick her up ... what time the surgery will be. I guess we will find out all in good time. Evidently it is quite common for the transport team to call and say, "oh, we're on our way"
Tomorrow will be a day of hurry up and wait for Josh & I. Luckily Josh will be telecommuting from the hospitals tomorrow and Thursday so that we can wait around for all those particulars. Luckily I am working on a new blanket for Riley, so this will give me plenty of time to work on it and to get reading my next book club book as I am confident that Riley will be a-okay and I will be able to enjoy a night out.
Monday, October 25, 2010
10-25-10 8pm
So today was another good day for Riley. She gained another 1.4 ounces and we are still on schedule for the move on Wednesday and Surgery on Thursday.
Also, I think the crying is gone for the moment - I haven't cried in at least two or three days and I don't believe Michele has either. My wife's blog post from yesterday is accurate - especially the part about me being wonderful.
I have always wanted to fix people and things around me. I know in my head that this is something that I am not going to ever fix. I will not be growing the rest of her chromosome, I will not make her syndrome go away. But somewhere in the deep recesses of my fatherhood, I think that if I learn 10 more things, read for a couple more hours, hold her for 1 more minute, play with her arms and legs for a little longer, talk to her about my day - it will get better.
It won't and there are a lot of moments when I am ok with that - we will have to face each challenge as it comes about. The first challenge is feed tube and stomach surgery, 2nd is getting her home, 3rd is day care, 4th is getting big enough for another surgery, 5th is open heart surgery, 6th is therapists (physical and probably learning), 7th is getting her to eat on her own. Again, taken in a group it is a list that makes me want to breakdown and cry for the amount that we are putting my little girl through, the sacrifices that Zoey is going to have to make and honestly for the amount of work that my wife and I are going to have to exert.
But you take each one of them on their own and her first surgery doesn't seem so bad - lots of kids have feeding tubes and reflux issues that need to be fixed early on in life (heard about 2 more today). Getting her home in about 1.5 months after birth is nothing - there are kids in our unit who have been in there for over 3 months. Day care already said they are cool with her feeding tube (whether mom and I are comfortable with their comfort level is a different story). Her getting big enough doesn't seem like a problem so far as she is growing by leaps and bounds......you get the point.
I know that there are moments that I am sure that I am not handling this in a textbook manner. I'm sure I have said some things (both on this blog and in person) that I shouldn't have to some of you and for that I can only apologize. But this is my family, my beautiful wife Michele who none of my joys in life would be possible without, Zoey my first born who has brought me happiness and pride that I never knew were possible, and Riley my little flower who has taught me that there is no limit to the amount of space in my heart for those that I love. I will be here for each and every one of them till the day that I am no more and there is nothing I wouldn't give for or to them.
Also, I think the crying is gone for the moment - I haven't cried in at least two or three days and I don't believe Michele has either. My wife's blog post from yesterday is accurate - especially the part about me being wonderful.
I have always wanted to fix people and things around me. I know in my head that this is something that I am not going to ever fix. I will not be growing the rest of her chromosome, I will not make her syndrome go away. But somewhere in the deep recesses of my fatherhood, I think that if I learn 10 more things, read for a couple more hours, hold her for 1 more minute, play with her arms and legs for a little longer, talk to her about my day - it will get better.
It won't and there are a lot of moments when I am ok with that - we will have to face each challenge as it comes about. The first challenge is feed tube and stomach surgery, 2nd is getting her home, 3rd is day care, 4th is getting big enough for another surgery, 5th is open heart surgery, 6th is therapists (physical and probably learning), 7th is getting her to eat on her own. Again, taken in a group it is a list that makes me want to breakdown and cry for the amount that we are putting my little girl through, the sacrifices that Zoey is going to have to make and honestly for the amount of work that my wife and I are going to have to exert.
But you take each one of them on their own and her first surgery doesn't seem so bad - lots of kids have feeding tubes and reflux issues that need to be fixed early on in life (heard about 2 more today). Getting her home in about 1.5 months after birth is nothing - there are kids in our unit who have been in there for over 3 months. Day care already said they are cool with her feeding tube (whether mom and I are comfortable with their comfort level is a different story). Her getting big enough doesn't seem like a problem so far as she is growing by leaps and bounds......you get the point.
I know that there are moments that I am sure that I am not handling this in a textbook manner. I'm sure I have said some things (both on this blog and in person) that I shouldn't have to some of you and for that I can only apologize. But this is my family, my beautiful wife Michele who none of my joys in life would be possible without, Zoey my first born who has brought me happiness and pride that I never knew were possible, and Riley my little flower who has taught me that there is no limit to the amount of space in my heart for those that I love. I will be here for each and every one of them till the day that I am no more and there is nothing I wouldn't give for or to them.
Sunday, October 24, 2010
10/24/10 - 7:40 pm
I spent a nice afternoon with my two girls at the hospital. Zoey is absolutely precious with her little sister. She just loves holding Riley, and is so tender when she is holding her. I am so blessed to have these two little angels in my life. It amazing to me to look at a newborn picture of Zoey and see how much Riley resembles her. I am sure, even now, that they will have two very different personalities. Zoey is headstrong and independent --- to the point where it's her way of the highway. Riley seems to be much more laid back. I think she is a super tough little girl, and I am quite certain that she will continue to amaze me in everything that she will face in her life.
Riley got a chance to enjoy her bouncy seat today ... twice! Once with daddy and once with me. It seems like she really enjoys it. She was awake and enjoying the different perspective of her room, then I turn on the noise machine attached to the seat and the eyes closed almost immediately. Riley even got her first Patriots shirt today. All 4 of us were decked out for a Patriots win.
I worry for my husband, despite all of the good news we have been having lately. Josh is pulled so thin lately, between work, the hospital and his family, I don't think he knows which way to go. I know that he is not sleeping because he simply cannot turn off his brain for even a little while. Josh is an amazing man, his one true fault (although there are several superficial ones!) is that he is a "fixer". To Josh, not being able to fix anything for the people he cares about is a failure in himself. So not being able to fix the things that ail his tiny 2 week old daughter is absolutely killing him. It truly breaks my heart to see this affecting him so badly. He is trying to be so strong for everyone right now, and I know especially for me. I have been dealing with my own grief & guilt that I fear I have been sadly neglecting his feelings, and for that I am truly sorry.
Riley got a chance to enjoy her bouncy seat today ... twice! Once with daddy and once with me. It seems like she really enjoys it. She was awake and enjoying the different perspective of her room, then I turn on the noise machine attached to the seat and the eyes closed almost immediately. Riley even got her first Patriots shirt today. All 4 of us were decked out for a Patriots win.
I worry for my husband, despite all of the good news we have been having lately. Josh is pulled so thin lately, between work, the hospital and his family, I don't think he knows which way to go. I know that he is not sleeping because he simply cannot turn off his brain for even a little while. Josh is an amazing man, his one true fault (although there are several superficial ones!) is that he is a "fixer". To Josh, not being able to fix anything for the people he cares about is a failure in himself. So not being able to fix the things that ail his tiny 2 week old daughter is absolutely killing him. It truly breaks my heart to see this affecting him so badly. He is trying to be so strong for everyone right now, and I know especially for me. I have been dealing with my own grief & guilt that I fear I have been sadly neglecting his feelings, and for that I am truly sorry.
10-24-10 1:45pm
So we have a more definitive plan now. The best day for Riley's surgery will be on this Thursday, 10/28/10. So unless something changes she will be moving on Wednesday and have a couple more tests run on her over at Egleston to make sure that the doctors are not going to have any mishaps when they get in there with her.
Poop!
So, yesterday I got to experience a new first. Something that I never even experienced with Zoey.
While changing Riley's poopy diaper (and it was a big one too!), my precious, tiny daughter projectile pooped all over me! The nurse & I had to change all of Riley's clothes, and her entire bed b/c it was just covered in poop. I didn't realize that a person could poop like that! Goes to show that every kid is different. As gross as it was, it was still kind of funny
While changing Riley's poopy diaper (and it was a big one too!), my precious, tiny daughter projectile pooped all over me! The nurse & I had to change all of Riley's clothes, and her entire bed b/c it was just covered in poop. I didn't realize that a person could poop like that! Goes to show that every kid is different. As gross as it was, it was still kind of funny
10-24-10 10:30am
Sorry for no posts yesterday, but we decided to take a day off. Our little Riley had a great day yesterday getting up to 5lbs 14.5oz on Friday evening and then last night when she got weighed she was at 6lbs!!!! She may have to go on weight watchers soon. Her only issues recently has been her mucus, well that and she pooped all over her mother while she was being changed yesterday. In the 2+ weeks that Riley has been with us I have probably changed about double the amount of diapers that my wife has and no poop on these hands - I think Riley has made her choice about who is her favorite.
We are waiting to hear the official word that Riley is moving to Egleston tomorrow - her transfer is tenative right now, but we need to know that when she gets there, there will be a bed. Anyway - it has been a very calm couple of days, certainly thanks to the grandparents assistance and Zoey being a very good daughter and big sister. Zoey will be coming down to see Riley again today, so hopefully I will have some pictures to share later today. Thank you again for all of the support. It sounds very very weird to say this, but I hope Riley's surgery is early this week so we can start moving forward in our battles.
We are waiting to hear the official word that Riley is moving to Egleston tomorrow - her transfer is tenative right now, but we need to know that when she gets there, there will be a bed. Anyway - it has been a very calm couple of days, certainly thanks to the grandparents assistance and Zoey being a very good daughter and big sister. Zoey will be coming down to see Riley again today, so hopefully I will have some pictures to share later today. Thank you again for all of the support. It sounds very very weird to say this, but I hope Riley's surgery is early this week so we can start moving forward in our battles.
Friday, October 22, 2010
10/22/10 - 8:42 am
So, it's good to know that I am "normal", or so my therapist tells me. Evidently my crying jags are totally okay, and I am behaving as anyone in this kind of crazy situation would. Good to know.
Riley had a good day overall yesterday. She was sleeping nice & calmly when we first got to the hospital, but then she woke up when she heard us talking and was wide awake and seemed to be enjoying the attention from her mom & grandparents.
I went & did something "normal" for myself and got a haircut. I feel so much better just to do that one simple thing. Since my haircut was in the middle of the day, I picked up Zoey a little early from school and brought her back down to the hospital so that she could have a nice mid-week visit with her sister. Zoey is absolutely precious with Riley; she is so gentle and loving when she touches Riley. Zoey even sang a couple of songs and gave Riley some kisses for her 2 week birthday.
As excited as I am to be getting the surgery scheduled, I am coming up with a million questions. If we can get this thing officially schedule, then we can finally talk to the surgeon and maybe get some answers. First & foremost I want to know how long the surgery will take and what it actually entails. What will post-op be like? Will Riley be in pain? If so, can they give her something? When will they start using the g-tube? Right away, or does it need time to heal first? I guess these kinds of things will keep popping into my head right until surgery time.
Riley had a good day overall yesterday. She was sleeping nice & calmly when we first got to the hospital, but then she woke up when she heard us talking and was wide awake and seemed to be enjoying the attention from her mom & grandparents.
I went & did something "normal" for myself and got a haircut. I feel so much better just to do that one simple thing. Since my haircut was in the middle of the day, I picked up Zoey a little early from school and brought her back down to the hospital so that she could have a nice mid-week visit with her sister. Zoey is absolutely precious with Riley; she is so gentle and loving when she touches Riley. Zoey even sang a couple of songs and gave Riley some kisses for her 2 week birthday.
As excited as I am to be getting the surgery scheduled, I am coming up with a million questions. If we can get this thing officially schedule, then we can finally talk to the surgeon and maybe get some answers. First & foremost I want to know how long the surgery will take and what it actually entails. What will post-op be like? Will Riley be in pain? If so, can they give her something? When will they start using the g-tube? Right away, or does it need time to heal first? I guess these kinds of things will keep popping into my head right until surgery time.
Thursday, October 21, 2010
10-21-10 9:30pm
And so it starts - please explain to me how this makes mathematical/financial sense. Not human interest, heart warming, compassion sense - just mathematical/financial sense.
Two options:
1) spend 3 more days in NICU - get surgery (at a hospital that specializes in infant surgeries, so granted it might be more expensive) - spend 10 days in recovery - go home = 13-15 days in hospital/intensive care/surgery
2) spend 40 - 60 more days in NICU - get surgery (at a children's hospital that does surgeries) - spend 10 days in recovery - go home = 51-71 days in hospital/intensive care/surgery
Honestly, how is this even a debate. I could see someone fighting for the longer term care and having their insurance company put up a stink about it, but our ridiculous one decided that they were going to deny the 1st course of quicker action. Thankfully the great folks at Northside (our insurance case worker for Northside + the NICU nurse) called them up and talked them through the logic.....they finally gave in.
I knew that it was a matter of time before the ridiculousness started with the insurance company, but I expected it to be over something that would save them money - NOT COST THEM MORE!!!!!!
Yeah - and universal healthcare is supposed to be the pain in the rear - cause private is so wonderfully intelligent. I say that if it is broke, let's try and fix it.
Welcome to Holland
Yesterday I spoke with Cheri Coyle of the Southeastern 22q Support Group. She shared the following with me:
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
10/21/10 - 8:45 am
Josh is on the road today for work, so it will just be me today (most likely). I have a busy day starting with seeing my therapist. I am so glad that she was able to work me in today as I think it will help to talk to someone that is completely uninvolved in Riley's life. So much has happened in the last 2 weeks, it actually feels like 2 months have gone by already.
Hopefully we will hear soon about Riley's surgery so that we can get a definite date & time on the books as they will still need to transport Riley via ambulance to the hospital. I know it's selfish, but I just want to get this going so that we can start Riley's recovery and road home. In my head, I know that getting Riley home isn't going to magically heal her, but it will help us to get back to a "normal" routine. At least what will become normal to us anyway.
According to Riley's nurse, Ginger, she gained 0.10 ounces last night bringing her up to a whopping 5 lbs 12.6 oz. Every bit counts, that's for sure! I plan on making 2 trips today to the hospital. The 1st one after my therapist appointment, then again after I pick up Zoey. Zoey had a rough night last night and the littlest things were making her cry her little heart out. This is yet another reason that I want Riley to come home. I think that when Zoey is more involved in her life, it may seem more real to her. I know only visiting once in a while and having mommy & daddy spending all sorts of time at the hospital has to be hard on her. I'm definitely babying Zoey a little more right now, but in my heart I am sure that is what she needs from me.
Hopefully we will hear soon about Riley's surgery so that we can get a definite date & time on the books as they will still need to transport Riley via ambulance to the hospital. I know it's selfish, but I just want to get this going so that we can start Riley's recovery and road home. In my head, I know that getting Riley home isn't going to magically heal her, but it will help us to get back to a "normal" routine. At least what will become normal to us anyway.
According to Riley's nurse, Ginger, she gained 0.10 ounces last night bringing her up to a whopping 5 lbs 12.6 oz. Every bit counts, that's for sure! I plan on making 2 trips today to the hospital. The 1st one after my therapist appointment, then again after I pick up Zoey. Zoey had a rough night last night and the littlest things were making her cry her little heart out. This is yet another reason that I want Riley to come home. I think that when Zoey is more involved in her life, it may seem more real to her. I know only visiting once in a while and having mommy & daddy spending all sorts of time at the hospital has to be hard on her. I'm definitely babying Zoey a little more right now, but in my heart I am sure that is what she needs from me.
Wednesday, October 20, 2010
10-20-10 9pm
So following more discussions between the GI specialist, our pediatrician, the cardiologist, and a surgeon over at Egleston hospital - it looks as though our little flower will probably get her G Tube inserted and stomach valve tightened at the beginning of next week. They have the OR available for the surgery on Monday now, but they need room in the NICU that is over there and we don't know if they have a bed available for Monday or not.
While this made us very excited that Riley was going to start progressing in her fight against her issues, this simple statement by her doctor made me stop in my tracks - they don't have any beds available for recovery at this pediatric surgical unit. It saddens me to no end to realize that other families are going through things that could possibly be much worse then what our little one has - or even simple procedures. It seems such a difficult and sad way to come into this world - I want so much for us and the other families to be able to celebrate our newest additions, but some won't ever get to do that and that thought crosses my mind at least once a day. No matter the battles that Riley has to face, she will come home with us, she might have pieces of her that are slightly broken at the moment, but some babies never even get the chance to be broken. For those families my heart breaks.
Riley had a great day today - she seems to be responding well to the feeding tube in her nose instead of her mouth. She has a lot of mucus, but supposedly this is normal. She slept a lot today and she needs that to grow and get stronger. When she was awake, she has a new half smile that she likes to give me and I cherish every second that I see it - her and I enjoy staring at each other for as long as she can keep her eyes open. She also seems to be responding well to the diarrhetic as she continues to poop like a greyhound before a run.
Zoey seems to be having a tough time with it as she had a couple of decent crying fits about nothing the last couple of days. Michele and I continue to talk to her about Riley in an honest way and tell her everything that we know in a non-technical manner. I don't know how else to be with my oldest daughter, I have never stretched the truth or made something up for her (you know, except Santa or how well the Red Sox are doing - she doesn't like them losing any more then I do), I have always tried to give her facts and let her ask lots of questions. I hope we are doing the right thing as she is very smart. In some great news for Zoey - we kicked the ball around in the backyard last night and she can dribble the soccer ball with both feet while running. She is totally going to be better then Mia Hamm.
Michele heard back from the Southeaster Center of Excellence (a 22q deletion syndrome group in Atlanta) and she had a great talk with one of the 3 woman who run it. There is a family that they know of here in Alpharetta that we may get to talk with soon. Also, the woman that Michele talked to has a 9 year old little girl with the syndrome and she took a little longer to accomplish some things and had immunity issues growing up, but otherwise is just like her other 2 children without the syndrome. So hopefully once our little flower gets over her first couple of years of issues, she can start focusing on getting into Harvard so she can become the preeminent researcher on this awful thing that she has.
Thanks again for the well wishes.
While this made us very excited that Riley was going to start progressing in her fight against her issues, this simple statement by her doctor made me stop in my tracks - they don't have any beds available for recovery at this pediatric surgical unit. It saddens me to no end to realize that other families are going through things that could possibly be much worse then what our little one has - or even simple procedures. It seems such a difficult and sad way to come into this world - I want so much for us and the other families to be able to celebrate our newest additions, but some won't ever get to do that and that thought crosses my mind at least once a day. No matter the battles that Riley has to face, she will come home with us, she might have pieces of her that are slightly broken at the moment, but some babies never even get the chance to be broken. For those families my heart breaks.
Riley had a great day today - she seems to be responding well to the feeding tube in her nose instead of her mouth. She has a lot of mucus, but supposedly this is normal. She slept a lot today and she needs that to grow and get stronger. When she was awake, she has a new half smile that she likes to give me and I cherish every second that I see it - her and I enjoy staring at each other for as long as she can keep her eyes open. She also seems to be responding well to the diarrhetic as she continues to poop like a greyhound before a run.
Zoey seems to be having a tough time with it as she had a couple of decent crying fits about nothing the last couple of days. Michele and I continue to talk to her about Riley in an honest way and tell her everything that we know in a non-technical manner. I don't know how else to be with my oldest daughter, I have never stretched the truth or made something up for her (you know, except Santa or how well the Red Sox are doing - she doesn't like them losing any more then I do), I have always tried to give her facts and let her ask lots of questions. I hope we are doing the right thing as she is very smart. In some great news for Zoey - we kicked the ball around in the backyard last night and she can dribble the soccer ball with both feet while running. She is totally going to be better then Mia Hamm.
Michele heard back from the Southeaster Center of Excellence (a 22q deletion syndrome group in Atlanta) and she had a great talk with one of the 3 woman who run it. There is a family that they know of here in Alpharetta that we may get to talk with soon. Also, the woman that Michele talked to has a 9 year old little girl with the syndrome and she took a little longer to accomplish some things and had immunity issues growing up, but otherwise is just like her other 2 children without the syndrome. So hopefully once our little flower gets over her first couple of years of issues, she can start focusing on getting into Harvard so she can become the preeminent researcher on this awful thing that she has.
Thanks again for the well wishes.
Tuesday, October 19, 2010
10-19-10 8pm
So not to get philosophical or anything, but there is no up without down and there is no down without up. I wish we just had a couple of days of even keel. After yesterday's bad news, today was filled with what I will call hopeful.
1) The daycare we were going to use for Riley seems ok with her heart issue and with her having a G Tube for feeding - so that helps our piece of mind immensely.
2) The bigger news is that one of the pediatric doctors that has been seeing Riley called a child surgeon specialist at Egelston hospital where Riley's heart surgery is going to be regarding the G Tube and our GI doctor meeting yesterday. The surgeon over there felt that he could do the G Tube insertion on someone Riley's size and age. The cardiologist came by and explained that Egelston is used to children's surgeries so that is why they can do surgeries that other places can't. So the surgeon is looking into OR time for the beginning of next week!!!! This means that they may be able to do the G Tube and tighten up the upper valve in her stomach so she won't have her reflux problem.
3) She has moved up to 14ml/hr of 30 calorie food and she is getting 2 lasik doses a day to make sure that we keep all of the potential fluid out of her chest cavity. Believe it or not this in preparation for her heart surgery in 4-6 months. At least they are thinking long term.
I wish that I could say that I am over the moon about this, but I fully expect to walk in tomorrow and they tell me that my daughter has grown a third leg or something and we have to wait to have all her surgeries until the foot on that leg is done growing toenails or something.
Michele is feeling much much better this afternoon and has reached out to some people for help in dealing with this. This makes me feel better as I was afraid that I was losing my wife to an abyss that she couldn't come back from and Zoey, Riley and I need her desperately, now and forever. Michele and I both also feel better because it seems that Riley has a little bit of a longer term plan going finally:
1 - G Tube insertion and upper stomach valve tightening surgery and recovery
2 - Come home grow bigger and eventually go to day care, lots of doctor visits, and get some preventative shots
3 - Open heart surgery to repair her VSD (moderate hole between her lower ventricles - remember, the crapy thing that started all of this) and recovery
4 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey
5 - Get surgery to fix my swallow problem and recovery
6 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey and live as much of a wonderful life as I can
I'm 100% positive that it will not go that exact way, but we are getting better every day at trying to deal with the completely topsy turvy world of 22q deletion syndrome. I'm not going to sit here and tell anyone that my newest daughter is any more special then anyone else's child is to them - because she isn't. But what I can tell you is that my little flower is just going to need special gardening techniques to grow into the person she is going to be. I just hope that I can have the best green thumb possible.
As always - thank you for the absolute torrent of support, love, and thoughts that we have received. Michele and I knew that we had wonderful friends and family before this, but the notes/cards/emails that we have received have overwhelmed us. If we could turn every one of these in for credit at the front desk of the hospital - Northside would be able to fix every baby in the NICU for 5 years.
1) The daycare we were going to use for Riley seems ok with her heart issue and with her having a G Tube for feeding - so that helps our piece of mind immensely.
2) The bigger news is that one of the pediatric doctors that has been seeing Riley called a child surgeon specialist at Egelston hospital where Riley's heart surgery is going to be regarding the G Tube and our GI doctor meeting yesterday. The surgeon over there felt that he could do the G Tube insertion on someone Riley's size and age. The cardiologist came by and explained that Egelston is used to children's surgeries so that is why they can do surgeries that other places can't. So the surgeon is looking into OR time for the beginning of next week!!!! This means that they may be able to do the G Tube and tighten up the upper valve in her stomach so she won't have her reflux problem.
3) She has moved up to 14ml/hr of 30 calorie food and she is getting 2 lasik doses a day to make sure that we keep all of the potential fluid out of her chest cavity. Believe it or not this in preparation for her heart surgery in 4-6 months. At least they are thinking long term.
I wish that I could say that I am over the moon about this, but I fully expect to walk in tomorrow and they tell me that my daughter has grown a third leg or something and we have to wait to have all her surgeries until the foot on that leg is done growing toenails or something.
Michele is feeling much much better this afternoon and has reached out to some people for help in dealing with this. This makes me feel better as I was afraid that I was losing my wife to an abyss that she couldn't come back from and Zoey, Riley and I need her desperately, now and forever. Michele and I both also feel better because it seems that Riley has a little bit of a longer term plan going finally:
1 - G Tube insertion and upper stomach valve tightening surgery and recovery
2 - Come home grow bigger and eventually go to day care, lots of doctor visits, and get some preventative shots
3 - Open heart surgery to repair her VSD (moderate hole between her lower ventricles - remember, the crapy thing that started all of this) and recovery
4 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey
5 - Get surgery to fix my swallow problem and recovery
6 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey and live as much of a wonderful life as I can
I'm 100% positive that it will not go that exact way, but we are getting better every day at trying to deal with the completely topsy turvy world of 22q deletion syndrome. I'm not going to sit here and tell anyone that my newest daughter is any more special then anyone else's child is to them - because she isn't. But what I can tell you is that my little flower is just going to need special gardening techniques to grow into the person she is going to be. I just hope that I can have the best green thumb possible.
As always - thank you for the absolute torrent of support, love, and thoughts that we have received. Michele and I knew that we had wonderful friends and family before this, but the notes/cards/emails that we have received have overwhelmed us. If we could turn every one of these in for credit at the front desk of the hospital - Northside would be able to fix every baby in the NICU for 5 years.
10/19/10 - 9:00 am
So, yet again, I have started my day with tears. I honestly don't know how I have this much water in my body. Surely after all the tears I have cried already, I should be completely dried up. I am struggling to put one foot in front of the other these days. I am so very tired of seeing my newborn daughter hooked up to a million tubes and wires. I honestly don't care how nice everyone has been, and they really have been, I don't want to see another nurse taking care of my daughter. That is supposed to be my job. I am supposed to be rocking Riley to sleep and waking up in the middle of the night to feed her. I would sacrifice almost anything that I possibly could at this moment to make that happen. I am struggling to be a good mom to Zoey right now and am trying so hard to keep it together whenever she is around. I am sure that we will be the very best parents that we can be for Riley, and we will get her anything that she needs. I just so desperately want to get her big enough & well enough to come home where she belongs. I hate, hate, hate that Riley's 1st holiday and possibly the 2nd as well, will be spent in a NICU. I fully intend on dressing her up in her costume on October 31st. I guess it's a good thing that she's too little to know what is going on. I can only pray that we will get enough of this medical stuff behind her before she is old enough to realize what is going on.
On a brighter note, Riley increased her weight from 5 lbs 10.7 oz to 5 lbs 11.4 oz, almost an entire ounce. Hopefully she can keep this rate of weight gain up and get herself that much closer to being able to have surgery. Also, I spoke with the daycare that we have been planning on using for Riley when I go back to work and luckily they told me that they would be able to accommodate a feeding tube. I can't even begin to tell you how much of a load off my shoulders that is.
So we have a plan, and that is what Josh & I have to focus on, as hard as these days may be. We need Riley to get to 4 kilos. Then we need to assess getting the G Tube and re-assess Riley's ability to swallow. In the meantime I am praying that with increased size and maturity perhaps the swallowing may improve to some degree.
I have reached out to the local 22q support group today and hopefully I will hear back form them rather quickly. I know that I need some help mentally & emotionally to be able to move on to the next hurdle.
On a brighter note, Riley increased her weight from 5 lbs 10.7 oz to 5 lbs 11.4 oz, almost an entire ounce. Hopefully she can keep this rate of weight gain up and get herself that much closer to being able to have surgery. Also, I spoke with the daycare that we have been planning on using for Riley when I go back to work and luckily they told me that they would be able to accommodate a feeding tube. I can't even begin to tell you how much of a load off my shoulders that is.
So we have a plan, and that is what Josh & I have to focus on, as hard as these days may be. We need Riley to get to 4 kilos. Then we need to assess getting the G Tube and re-assess Riley's ability to swallow. In the meantime I am praying that with increased size and maturity perhaps the swallowing may improve to some degree.
I have reached out to the local 22q support group today and hopefully I will hear back form them rather quickly. I know that I need some help mentally & emotionally to be able to move on to the next hurdle.
Monday, October 18, 2010
10-18-10 9pm
So while we had some positive news today (Riley can see, her chest sounds much better, and all that money I have been paying into Social Security and Medicare all these years may actually pay off), we will have to put today in the bad column.
Riley will most likely be a candidate for a G-Tube - this is the feeding tube that will be surgically put directly into her stomach. That isn't bad and we were expecting and hoping for it - the problem is she has to be 4 kilos or over 8 pounds to receive this type of surgery. She is currently 2.5 kilos and around 5lbs 10oz. There are 16oz in every pound so she has over 38 oz to go. On her best day so far she gained 1.2oz. This all means that our new little girl will be spending at least the next month in the NICU. We can't even attempt the surgery until she reaches this weight, so if she is anything like Zoey (who eats like me and is somehow rail thing) it may be much much longer then a month. If her reflux does not fix itself by then (which the doctor says it may) then they would also have to tighten her stomach's upper sphincter. In about two months we will try another eating test, but most likely her swallowing problem are an issue with her palate that can only be corrected by surgery - and we have no idea when that would be.
This was obviously a devastating blow to Michele and I. We so desperately want to have our newest little girl home with us and celebrate her joining our family and it is yet again pushed away. This is another month of having people telling us it is going to be alright - when they don't know that, the doctors don't know that. This is another month of trying to beat traffic down 400 so I can hold my little flower in the morning when she wakes up. This is another month of seeing my wife cry every single day. This is another month of watching another new baby being put into someone else's car and having to watch it over and over and over again - I never knew that your heart could break so much when you are watching something so joyous. This is another month of my Riley smelling like alcohol rub instead of like a baby. This is another month of having to worry about how long a tube is or is it going to get hooked on something and rip it out of her little body. This is another month of not being able to dance with my daughter. This is another month of trying to explain to Zoey why her little sister isn't here. This is Riley's first Halloween being in a hospital bed instead of with me in her stroller. This is another month or more of my heart breaking every time I have to leave her.
I will continue to spend every minute that I can spare in my life with my newest daughter, but I honestly don't know how much longer my heart can take leaving her in that hospital every night and every day. I'm crying as I write this, not because of the next month of this hospital stay, but because these are just the tip of the iceberg when it comes to my newest little ones' days in hospitals - for those keeping track in the foreseeable future she needs to have a feeding tube surgically placed in her, open heart surgery, and something done to her palate (I don't imagine any of those are outpatient type procedures). I had to ask a doctor today if my daughter was ever going to be able to eat an apple and her answer was she hoped so.....what type of a question is that for a father to have to ask about his newborn?
Thank you again for the wonderful thoughts and even some gifts - we apologize for not having gotten any thank you cards out yet, know that in our hearts we are phenomenally thankful for everything.
Riley will most likely be a candidate for a G-Tube - this is the feeding tube that will be surgically put directly into her stomach. That isn't bad and we were expecting and hoping for it - the problem is she has to be 4 kilos or over 8 pounds to receive this type of surgery. She is currently 2.5 kilos and around 5lbs 10oz. There are 16oz in every pound so she has over 38 oz to go. On her best day so far she gained 1.2oz. This all means that our new little girl will be spending at least the next month in the NICU. We can't even attempt the surgery until she reaches this weight, so if she is anything like Zoey (who eats like me and is somehow rail thing) it may be much much longer then a month. If her reflux does not fix itself by then (which the doctor says it may) then they would also have to tighten her stomach's upper sphincter. In about two months we will try another eating test, but most likely her swallowing problem are an issue with her palate that can only be corrected by surgery - and we have no idea when that would be.
This was obviously a devastating blow to Michele and I. We so desperately want to have our newest little girl home with us and celebrate her joining our family and it is yet again pushed away. This is another month of having people telling us it is going to be alright - when they don't know that, the doctors don't know that. This is another month of trying to beat traffic down 400 so I can hold my little flower in the morning when she wakes up. This is another month of seeing my wife cry every single day. This is another month of watching another new baby being put into someone else's car and having to watch it over and over and over again - I never knew that your heart could break so much when you are watching something so joyous. This is another month of my Riley smelling like alcohol rub instead of like a baby. This is another month of having to worry about how long a tube is or is it going to get hooked on something and rip it out of her little body. This is another month of not being able to dance with my daughter. This is another month of trying to explain to Zoey why her little sister isn't here. This is Riley's first Halloween being in a hospital bed instead of with me in her stroller. This is another month or more of my heart breaking every time I have to leave her.
I will continue to spend every minute that I can spare in my life with my newest daughter, but I honestly don't know how much longer my heart can take leaving her in that hospital every night and every day. I'm crying as I write this, not because of the next month of this hospital stay, but because these are just the tip of the iceberg when it comes to my newest little ones' days in hospitals - for those keeping track in the foreseeable future she needs to have a feeding tube surgically placed in her, open heart surgery, and something done to her palate (I don't imagine any of those are outpatient type procedures). I had to ask a doctor today if my daughter was ever going to be able to eat an apple and her answer was she hoped so.....what type of a question is that for a father to have to ask about his newborn?
Thank you again for the wonderful thoughts and even some gifts - we apologize for not having gotten any thank you cards out yet, know that in our hearts we are phenomenally thankful for everything.
10/18/10 - 4:00 pm
So far things have been looking good. I got up to the hospital around noon and so far the Poopy Queen has made 5 poopy diapers. I know I haven't been on diaper duty in a little while, but doesn't that seem to be a record number? Not only is she making a lot, man are they stinky! Most likely this is due to the fact that the doctors have increased Riley's calories from 28 to 30 and they also increased her volume from 12.5 ml to 13 ml per hour. That extra 1/2 ml really seems to be making her go. Hopefully this will show in her weight when they do her stats tonight.
Riley was checked out by Dr. Salit from the Thomas Eye Group this morning and Dr. Salit said that Riley's eye's look "perfect". She'll need to be checked up on again in about 4 months, so since we are there already with Zoey, maybe we can get both girls on the same schedule. One can only hope.
I am waiting around for the GI doc bcause he will hopefully be the answer man too. The nurses think that we won't see the doc until late afternoon, early evening, but that's okay. I've got some trashy magazines to occupy my time. Hopefully we will get some good news and some answers.
Also on the good news front, the Case Manager was here checking out Riley's file for insurance purposes and she informed me that due to Riley's condition, she may qualify for Medicaid. This would be super awesome because if she does, that would cover anything that our insurance doesn't cover. Please keep your fingers crossed on that, becasue heaven only knows what this bill will look like. My guess is that it will be one of those heart stopping kind of bills
Riley was checked out by Dr. Salit from the Thomas Eye Group this morning and Dr. Salit said that Riley's eye's look "perfect". She'll need to be checked up on again in about 4 months, so since we are there already with Zoey, maybe we can get both girls on the same schedule. One can only hope.
I am waiting around for the GI doc bcause he will hopefully be the answer man too. The nurses think that we won't see the doc until late afternoon, early evening, but that's okay. I've got some trashy magazines to occupy my time. Hopefully we will get some good news and some answers.
Also on the good news front, the Case Manager was here checking out Riley's file for insurance purposes and she informed me that due to Riley's condition, she may qualify for Medicaid. This would be super awesome because if she does, that would cover anything that our insurance doesn't cover. Please keep your fingers crossed on that, becasue heaven only knows what this bill will look like. My guess is that it will be one of those heart stopping kind of bills
10/18/10 - 8:30 am
Today is going to be a busy day. Riley is supposed to have an eye exam with Dr. Salit today ... ironically she is Zoey's eye doctor for her Duane's Syndrome so at least we are familiar with her. This is just a standard eye test so that they have a base line for Riley should anything change in the future. I am feeling pretty confident that Rile can see and she tracks us with her eyes already.
The really big thing is that Riley will be examined by the GI doctor today. He or she will be the one that will let us know if she will need a G Tube inserted into her stomach. If so, then we will learn all the particulars on what that will entail. How will we feed her, how will we maintain the tube and simple things like how will Riley get a bath? These are the things that Josh & I will need to master in order to bring our girl home with us. The biggest thing will be to know if there is a weight requirement for the G Tube to be inserted. Right now Riley weighs 5 lbs 10.7 oz (she gained 0.2 yesterday) so I'm thinking we'll have to fatten her up.
The other thing that was supposed to happen today was for the calories to be counted in my breast milk. This has been pushed back to Wednesday b/c the lactation nurse who knows how to do the test called in sick today. Hopefully I have high calorie milk so that too will help Riley in the weight gain deapartment.
The really big thing is that Riley will be examined by the GI doctor today. He or she will be the one that will let us know if she will need a G Tube inserted into her stomach. If so, then we will learn all the particulars on what that will entail. How will we feed her, how will we maintain the tube and simple things like how will Riley get a bath? These are the things that Josh & I will need to master in order to bring our girl home with us. The biggest thing will be to know if there is a weight requirement for the G Tube to be inserted. Right now Riley weighs 5 lbs 10.7 oz (she gained 0.2 yesterday) so I'm thinking we'll have to fatten her up.
The other thing that was supposed to happen today was for the calories to be counted in my breast milk. This has been pushed back to Wednesday b/c the lactation nurse who knows how to do the test called in sick today. Hopefully I have high calorie milk so that too will help Riley in the weight gain deapartment.
10/17/10 - 8:00 pm
Today has been a nice, calm, uneventful day. Exactly the kind of day that we like. Riley was awake for a big chunk of time when we were visiting earlier in the day. It's like she knows that she has visitors, and doesn't want to miss out on any of the fun. I promised her that I would hold her until she fell asleep, but she was totally fighting it.
Riley got another bath, so she was nice & clean and sweet smelling. She was having a lot of mucus, which is part of her swallowing issue, so we had to use the blue bulb suction thingy and the nurses and to use that industrial suction hose on her several times a day. Josh & I both think getting one of those things for the house would be a great investment.
Josh & I came back up to the hospital this evening and I was able to do a little skin-to-skin with my little starfish. Riley seemed to really like it and settled down all calm while nestled into my chest. Hopefully we'll be able to do that more often as it is good for the both of us.
Riley got another bath, so she was nice & clean and sweet smelling. She was having a lot of mucus, which is part of her swallowing issue, so we had to use the blue bulb suction thingy and the nurses and to use that industrial suction hose on her several times a day. Josh & I both think getting one of those things for the house would be a great investment.
Josh & I came back up to the hospital this evening and I was able to do a little skin-to-skin with my little starfish. Riley seemed to really like it and settled down all calm while nestled into my chest. Hopefully we'll be able to do that more often as it is good for the both of us.
Sunday, October 17, 2010
10/17/10 - 9:45 am
I am having a hard time letting go of my anger. Right now, just about everything makes me angry. I get angry every time I get out of the car in the parking garage and walk up to the hospital. I get angry every time there is a car in the pick up area with all the dad's making sure their new car seats are securely fastened for their new babies to come home. I get angry every time I think we have a tentative idea as to when we'll be able to bring Riley home, only to have some monkey wrench thrown in the gears and that date just gets pushed back further & further. I get angry that there are some babies near Riley that have no visitors and I get angry that we are so lucky to live close by & have no restrictions to visiting our little girl when these parents probably aren't so fortunate. I get angry that I am not producing enough milk, and I know there is really not much I can do about it. I get angry at how nice all the people we run into in the elevators are and how they assume that we have a preemie. I get angry at myself for wishing that was our only worry. I'm just plain angry.
10-17-10 8:45am
Riley had another good night last night. She had good bowel movement and she had a bath. She smells much much closer to a baby now instead of the antiseptic smell that permeates this place. We brought home some of Riley's swaddling blankets last night for mom to use to help stimulate some more milk production - they say that it is normal for mother's not near their little ones all the time to have decreased production, so now we just have to trick mom's body. Her lungs also sound good still.
Saturday, October 16, 2010
10-16-10 7:30pm
Riley has gained over 1 ounce in the last day. Also her lungs sound clear to the nurse. So some good news.
10-16-10 5:45pm
So I got to play some tennis this morning and it felt pretty good to focus on something else at least during most points I wasn't thinking about Riley. All of our neighborhood friends were again phenomenally supportive and offering their assistance or/and well wishes and thoughts. It was good to see everyone, but there was an awkwardness to trying to talk about what is going on with Riley Rose - mainly because the last news I had was bad and I felt myself breaking down a couple of times. Nothing that anyone else did, but I think Michele and I are going to have to learn to be ourselves again out in the world.
Zoey got another big sister present - Shrek 2 and her and bubbie watched it and played some baseball in the backyard while I tried to get some sleep. Bad days I get almost no sleep and good days I sleep phenomenally - I may have to head to a doctor to get some sleeping pills to help with the bad days.
Thanks again to everyone for their well wishes.
Zoey got another big sister present - Shrek 2 and her and bubbie watched it and played some baseball in the backyard while I tried to get some sleep. Bad days I get almost no sleep and good days I sleep phenomenally - I may have to head to a doctor to get some sleeping pills to help with the bad days.
Thanks again to everyone for their well wishes.
10-16-10 8am Part 2
Zoey has been dreaming about soccer. We are going to put her in a soccer league this spring and she is so excited she can hardly contain herself. She is even dreaming about it at night, but she told me that she had a bad dream the other day and I asked her what it was about and she said that she was playing soccer and her team lost. I'm scared that my fandom/competitiveness has rubbed off on my Zo in the wrong way - so I said something that I never thought that I would say, 'Right now it is just about playing and having fun and not about winning or losing.' I had to swallow hard on that statement, but I made it through. Zoey is such a light for us right now - she is so interested. That is the best way that I can describe it - she loves to learn new things and her and I have very long conversations that start with me asking her questions about what she has learned or her asking me questions such as, 'Why do we only have one moon and Saturn has more?' It's fun to see how deep I can get with her until she loses interest/doesn't get it - most of the time I get to the first one before the second. It is a fun game for me as I try and take things I have learned over the years and try to put them into 4 year old. I don't want to make it to simple for her though as I think our children are smarter then we give them credit for. My squiggles is one of the few things that brings utter joy to my life right now and I also feel sad for her as she will have to grow up/live with Riley getting 'special attention'. Michele and I are going to have to figure out how to make sure that she understands her role in all of this and her special place in our hearts and minds.
10-16-10 8am
So I have found a pretty good booklet of information on 22q from an Australian organization that deals specifically with this: http://www.vcfsfa.org.au/media/documents/vcfs%20parents%20guide.pdf
I guess down in Australia when a person has this there is a wonderful government support system. After reading this though, it is starting to sink in that our little flower is going to probably have a very very rough first 5-6 years of life physically and then have to deal with the mental issues that come with this awful thing for the rest of her life.
After the highs of Thursday evening, the lows of yesterday feel so low. What I try to keep remembering is that her accomplishments will be so sweeter because of what she/we have to overcome. I am just hopeful that despite all of the health issues our little one has the opportunities to accomplish whatever she wants to for the rest of her life. From everything that I have read we are going to need to see a number of physical and mental therapists, speech and learning teachers and lots of doctors. When looked at in total it is a phenomenally daunting task that is depressing - so we have to keep remembering to look at things individually. When faced with a tidal wave how do you worry about your shoes getting wet?
I guess down in Australia when a person has this there is a wonderful government support system. After reading this though, it is starting to sink in that our little flower is going to probably have a very very rough first 5-6 years of life physically and then have to deal with the mental issues that come with this awful thing for the rest of her life.
After the highs of Thursday evening, the lows of yesterday feel so low. What I try to keep remembering is that her accomplishments will be so sweeter because of what she/we have to overcome. I am just hopeful that despite all of the health issues our little one has the opportunities to accomplish whatever she wants to for the rest of her life. From everything that I have read we are going to need to see a number of physical and mental therapists, speech and learning teachers and lots of doctors. When looked at in total it is a phenomenally daunting task that is depressing - so we have to keep remembering to look at things individually. When faced with a tidal wave how do you worry about your shoes getting wet?
Friday, October 15, 2010
10-15-10 10pm
Just got back from visiting our little flower. Her and zoey got to enjoy each other for a little while. In the good side for today is her putting an ounce of weight on.
10-15-10 7pm
So today was one of those down days that we talked about during the good times the last couple of days.
Riley had her swallowing tests today and unfortunately it was found that she had the potential to aspirate with any of the bottle feedings. This means that the food can come back up into her lungs. So this is obviously a bad thing. She this means she is having serious issues with her swallowing which could be from the palatal problems or muscle issues that come with 22q.
So even though her reflux has been doing well, she still has the chance to sufficate. So right now, they will be pushing the feeding tube down from where it is now to right below the stomach into her upper intestine. They are also upping her calories so she can start to grow a little more as the diretic has had her lose an ounce.This tube movement and calorie uptick will stop her issues for now, but we need to have the GI doctor come in on Monday and check her out so we can have a path going forward. Most likely our little one will need to have surgery to have a feeding tube placed into her stomach/intestine so that we can feed her at home, so she can grow, so she can have heart surgery.
Beyond that we don't know what would happen. The GI doc should tell us whether they think this would fix itself as she grows (unlikely according to our current docs) or whether this swallow issue would need to be fixed by surgery when she gets older. This is bringing up very serious issues as we don't know if a daycare would accept a little baby with a feeding tube and due to economic situations Michele needs to work. This is a set back, but considering all the good news yesterday we consider ourselves about even (obviously if the daycare thing gets worked out). Heart surgery and swallowing issues in the bad column, but renal, hearing, immunity, calcium processing, no skeletal defects in the good column.
Thank you again for all of the notes of support and love - they truly are helping us get through.
Riley had her swallowing tests today and unfortunately it was found that she had the potential to aspirate with any of the bottle feedings. This means that the food can come back up into her lungs. So this is obviously a bad thing. She this means she is having serious issues with her swallowing which could be from the palatal problems or muscle issues that come with 22q.
So even though her reflux has been doing well, she still has the chance to sufficate. So right now, they will be pushing the feeding tube down from where it is now to right below the stomach into her upper intestine. They are also upping her calories so she can start to grow a little more as the diretic has had her lose an ounce.This tube movement and calorie uptick will stop her issues for now, but we need to have the GI doctor come in on Monday and check her out so we can have a path going forward. Most likely our little one will need to have surgery to have a feeding tube placed into her stomach/intestine so that we can feed her at home, so she can grow, so she can have heart surgery.
Beyond that we don't know what would happen. The GI doc should tell us whether they think this would fix itself as she grows (unlikely according to our current docs) or whether this swallow issue would need to be fixed by surgery when she gets older. This is bringing up very serious issues as we don't know if a daycare would accept a little baby with a feeding tube and due to economic situations Michele needs to work. This is a set back, but considering all the good news yesterday we consider ourselves about even (obviously if the daycare thing gets worked out). Heart surgery and swallowing issues in the bad column, but renal, hearing, immunity, calcium processing, no skeletal defects in the good column.
Thank you again for all of the notes of support and love - they truly are helping us get through.
10/15/10 - 9:00 am
Josh stopped by the hospital before work today and was told that Riley had a really good night. She actually got a bath for the first time in a week, so maybe now she will stop smelling like Latex and start smelling like a baby. Danielle, our night nurse, said that Riley actually slept through the night after her bath. We can only be so lucky when we do finally get home to have a good sleeper; unlike Zoey who was up every 1 1/2 - 2 hours at night!
I have to stop at the bank on my way out this morning to get a new debit card. On top of everything going on, while I was in the hospital I got an e-mail from Bank of America informing me that I had some suspicious activity on my checking account. Some stupid person in Michigan tried to use my card number (the actual card was in my wallet) all over the place. Boy, did they pick the wrong account to try to use ... this one is virtually empty! BOA was wonderful and took care of everything over the phone for me.
Here's to hoping that we have another god day. Riley has her OT scheduled for a swallow test today where they will feed her from the bottle with some delicious radioactive stuff inside and watch what happens in front of the x-ray. Keep your fingers crossed that everything is working right in there please.
Thursday, October 14, 2010
10-14-10 6pm
Today is the best day in little Riley's life so far. A quick rundown of the big wins for our little flower so far:
1) Her lymphocite (which help her fight off infections and sickness) levels are right where they are supposed to be. Additionally, due to her 22q status Riley may be eligible to receive a monthly CPV shot which gives her some hemoglobins - this helps the body fight off sickness and infections. So the normal levels are very good.
2) Her calcium is still being processed the way it is supposed to be.
3) The zantac seems to be doing what it is supposed to do as she isn't spitting up so much.
4) Her renal scan (her extraction organs - kidney/liver/intestines) came back good. She has a slight malformation of one of her kidneys, but it is actually something that happens in a lot of children not just ones with 22q. We will need to get this rechecked in a month to make sure that nothing has changed.
5) Riley had her first hearing test today and she passed that as well.
6) Nothing showed up on her blood culture in terms of infection, so they will be taking her off of her antibiotics.
She has also graduated to a crib that has an incline as well. I don't even have a bed that inclines. She will be having her eating study tomorrow to find out if her food is going down the right way - if I know my Jacobs' roots she won't have a problem finding her stomach, if anything it's that she is getting to much down there.
Today is a day that Michele, I and our family have been waiting for since this weekend. The bad news kept rolling in with no end in sight. Everything for our little one kept coming up whatever the opposite of roses is. But today was one for the win column for little Riley. She has been resting phenomenally well since the billirubin lights were finished.
I have just realized that my little one will be a week old tonight. I have never held her without some kind of wire or tube stuck to her, but even though it hurts me to remember this, today's news makes it so much less painful. Holding my daughter tonight gave me hope and promise for her future - there will be tough days ahead, I'm sure there will be more than I would like, but my little girl has fought more in 7 days then I have in a lifetime and already won important battles. People have told me that I need to be the 'strong one', but I just need to start following my little Riley's lead, because tomorrow has the promise of a different outcome.
1) Her lymphocite (which help her fight off infections and sickness) levels are right where they are supposed to be. Additionally, due to her 22q status Riley may be eligible to receive a monthly CPV shot which gives her some hemoglobins - this helps the body fight off sickness and infections. So the normal levels are very good.
2) Her calcium is still being processed the way it is supposed to be.
3) The zantac seems to be doing what it is supposed to do as she isn't spitting up so much.
4) Her renal scan (her extraction organs - kidney/liver/intestines) came back good. She has a slight malformation of one of her kidneys, but it is actually something that happens in a lot of children not just ones with 22q. We will need to get this rechecked in a month to make sure that nothing has changed.
5) Riley had her first hearing test today and she passed that as well.
6) Nothing showed up on her blood culture in terms of infection, so they will be taking her off of her antibiotics.
She has also graduated to a crib that has an incline as well. I don't even have a bed that inclines. She will be having her eating study tomorrow to find out if her food is going down the right way - if I know my Jacobs' roots she won't have a problem finding her stomach, if anything it's that she is getting to much down there.
Today is a day that Michele, I and our family have been waiting for since this weekend. The bad news kept rolling in with no end in sight. Everything for our little one kept coming up whatever the opposite of roses is. But today was one for the win column for little Riley. She has been resting phenomenally well since the billirubin lights were finished.
I have just realized that my little one will be a week old tonight. I have never held her without some kind of wire or tube stuck to her, but even though it hurts me to remember this, today's news makes it so much less painful. Holding my daughter tonight gave me hope and promise for her future - there will be tough days ahead, I'm sure there will be more than I would like, but my little girl has fought more in 7 days then I have in a lifetime and already won important battles. People have told me that I need to be the 'strong one', but I just need to start following my little Riley's lead, because tomorrow has the promise of a different outcome.
10/13/10 - 8:30 pm
More on the good news front ... Riley was moved from the 2nd floor NICU to the 7th floor NICU. This is a good thing on many levels. First off b/c she is stable enough to move from where the most critical patients are. Secondly her new area is such an improvement. Riley is now in a standard bassinet (hospital style of course) and she's in a semi-private room. She has a nice end spot next to the window with some nice comfy chairs for mom & dad to enjoy. We're hoping that this is just the next step to us bringing our baby home
Wednesday, October 13, 2010
10-13-10 5:30pm
So today is either neutral or a positive at least when it comes to little Riley.
Michele went to her follow-up doctor's appointment today. The doctor order her to get blood work and an EKG due to the fact that she has been having chest pains for 3 days now - she failed to tell anyone because she thinks it is just stress related. Her doctor agreed with her, but still wanted tests - she may need to go on anti-anxiety medication.
On to Riley Rose:
1) Her CRP levels went from 2.9 yesterday to 1.5 today. So this means either the antibiotics they put her on yesterday are starting to work or she just has CRP levels that bounce around - which can happen with newborns. We also found out that she may not have the immunity issues that could come with this - we believe this right now due to her lymphosite (sp?) levels being what they are supposed to be for her age. These help fight of infections and sickness, so we are huge fans of these.
2) Riley's nose CT came back showing that she simply had a swollen right nostril. So she is getting nose drops in both nostrils to help keep her airway clear.
3) Riley does not currently exhibit the skeltal abnormalities that can be associated with 22q. This does not mean that she may not develop them, but currently she does not exhibit any. Her palatal muscles may not be formed correctly thought and that may be leading to some of her reflux come back up her nose. This could lead to eating/speech problems in the future, but we will have to see a specialist in a couple of months regarding this.
4) Tomorrow Riley will be able to try out some bottles again due to her doing a good job keeping down the constant feed formula and her zantac regimen may be helping control her reflux. An occupational therapist will also give Riley some radioactive mixture with her formula and then be able to watch it go down to try and make sure that it is going down where it is supposed to.
5) She has also been moved out of her warming bed and into a true nursery bed. She has been swadled now for almost 24 hours and is in heaven. No more nakedness under the lights and exposed to the world, with her eyes covered. The nurses told us that she has slept for most of the last 24 hours which is what we need her to do - so she is perfectly content with her world at the moment.
So I am taking today as a win, mainly because we need it and because I'm also the score keeper/referee/coach. It would be a huge win for the day, except for the fact that my wife was having chest pains and not telling anyone - she needs to learn that she needs to take care of herself. I can only take care of one sick Jacobs girl at a time.
Thank you again to everyone for their thoughts.
Michele went to her follow-up doctor's appointment today. The doctor order her to get blood work and an EKG due to the fact that she has been having chest pains for 3 days now - she failed to tell anyone because she thinks it is just stress related. Her doctor agreed with her, but still wanted tests - she may need to go on anti-anxiety medication.
On to Riley Rose:
1) Her CRP levels went from 2.9 yesterday to 1.5 today. So this means either the antibiotics they put her on yesterday are starting to work or she just has CRP levels that bounce around - which can happen with newborns. We also found out that she may not have the immunity issues that could come with this - we believe this right now due to her lymphosite (sp?) levels being what they are supposed to be for her age. These help fight of infections and sickness, so we are huge fans of these.
2) Riley's nose CT came back showing that she simply had a swollen right nostril. So she is getting nose drops in both nostrils to help keep her airway clear.
3) Riley does not currently exhibit the skeltal abnormalities that can be associated with 22q. This does not mean that she may not develop them, but currently she does not exhibit any. Her palatal muscles may not be formed correctly thought and that may be leading to some of her reflux come back up her nose. This could lead to eating/speech problems in the future, but we will have to see a specialist in a couple of months regarding this.
4) Tomorrow Riley will be able to try out some bottles again due to her doing a good job keeping down the constant feed formula and her zantac regimen may be helping control her reflux. An occupational therapist will also give Riley some radioactive mixture with her formula and then be able to watch it go down to try and make sure that it is going down where it is supposed to.
5) She has also been moved out of her warming bed and into a true nursery bed. She has been swadled now for almost 24 hours and is in heaven. No more nakedness under the lights and exposed to the world, with her eyes covered. The nurses told us that she has slept for most of the last 24 hours which is what we need her to do - so she is perfectly content with her world at the moment.
So I am taking today as a win, mainly because we need it and because I'm also the score keeper/referee/coach. It would be a huge win for the day, except for the fact that my wife was having chest pains and not telling anyone - she needs to learn that she needs to take care of herself. I can only take care of one sick Jacobs girl at a time.
Thank you again to everyone for their thoughts.
Check me out
Here is what Riley's face looks like free of sunglasses and velcro. She loves being free of all that stuff on her face. After they turned off her lights, Josh & I were able to really hold Riley and snuggle with her all swaddled up. She absolutely loves to be swaddled.
Tuesday, October 12, 2010
10-12-10 8:30pm
I apologize for the wo-is-me and the dreariness of the last two days. After writing my last post, I looked around and saw 2 siblings who are part of triplets that were admitted this morning - they were born at 27 weeks - that is about 3 months early. Those children/parents/family have a rough road ahead, so who am I to be ranting about how ours is a woeful case. Her billirubin issues have been kicked and she is off the lites, so no more eye glasses for now. Tomorrow will be a better day because it has to be.
10-12-10 7:30pm
I'm just tired. Tired of seeing the NICU, tired of the phenomenally nice nurses, doctors and staff, tired of seeing my baby full of tubes, tired of getting nothing but bad news for days on end, tired of the bing of the alarms, tired of wanting to throw-up from crying, tired of wiping my nose, tired of watching my wife blame herself for something she didn't do, tired of having to tell Zoey that her little sister isn't coming home yet. Of all the things that I am tired of though it is answering the question, 'how are you?' - it is not that I am ungrateful in any way, shape, or form. The outpouring of support has been unreal around our little flower and it would take me a 1,000 life times to repay all of the warmth and love, but the answer that I feel every time when someone asks 'how are you?' is I have never ever in my 35 years been worse. There is no silver lining to what Riley is going through now; there has not been a better tomorrow.
Her blood cultures came back and she had elevated C Reactive Protein (CRP) levels, they were at 2.5 - they want them around 0 (on a 0-100 scale 2.5 is around 0, but the people with the MDs won't listen to me). This means that she has an infection somewhere in her little body - again, another issue with 22q is immune system problems and we were hoping to avoid some of the 200 issues that come with this awful thing, but it seems as though she is hitting every one on the punch list.
I know that we are supposed to take it one thing at a time and fight each thing as it comes, but we fight problem A and beat it and then problem B + C creep up, we fight problem B and beat it, but problem A comes back, we still have problem C and all of a sudden problem D and E come along for the ride. She can't win. This sounds weird but I want it just to be a heart issue - I desperately want my child to just have a gapping hole in one of her heart walls, but that isn't the way it is or will ever be.
I want to be laughing about how fuzzy my beautiful little girl is. I want to be watching her lift her neck already and be very proud. I want to watch her already using her hands to grab things and be handing her a little mini baseball. I want to hold her for hours on end without fear that I am making her throw-up or get her deathly sick. I want all these things, but instead I sit in a NICU for 12 hours a day and then lie in bed at home thinking about how I should be with her or I'm driving in my car wondering why it takes so long to get down 400, or I am typing another issue in to google and finding out how awful it is. Some day it will get better - that's what I keep trying to tell myself, but I'm not that convincing.
Her blood cultures came back and she had elevated C Reactive Protein (CRP) levels, they were at 2.5 - they want them around 0 (on a 0-100 scale 2.5 is around 0, but the people with the MDs won't listen to me). This means that she has an infection somewhere in her little body - again, another issue with 22q is immune system problems and we were hoping to avoid some of the 200 issues that come with this awful thing, but it seems as though she is hitting every one on the punch list.
I know that we are supposed to take it one thing at a time and fight each thing as it comes, but we fight problem A and beat it and then problem B + C creep up, we fight problem B and beat it, but problem A comes back, we still have problem C and all of a sudden problem D and E come along for the ride. She can't win. This sounds weird but I want it just to be a heart issue - I desperately want my child to just have a gapping hole in one of her heart walls, but that isn't the way it is or will ever be.
I want to be laughing about how fuzzy my beautiful little girl is. I want to be watching her lift her neck already and be very proud. I want to watch her already using her hands to grab things and be handing her a little mini baseball. I want to hold her for hours on end without fear that I am making her throw-up or get her deathly sick. I want all these things, but instead I sit in a NICU for 12 hours a day and then lie in bed at home thinking about how I should be with her or I'm driving in my car wondering why it takes so long to get down 400, or I am typing another issue in to google and finding out how awful it is. Some day it will get better - that's what I keep trying to tell myself, but I'm not that convincing.
10-12-10 2pm
So today is another step back. As with a good portion of babies born with VSD Riley has what is known as 22q11.2 deletion syndrome. The most common characteristic found with 22q (as we are going to be calling it) is VSD and other heart malformation disorders, so Riley is a check on that.
- 69% of 22q folks have palatal abnormalities - as of right now, the multiple people who have checked Riley Rose say that they feel a normal palate, but things could show up later or below the skin that they can feel now. The palatal abnormalities can lead to feeding problems and speech disorders.
- 70-90% have learning difficulties - this can be everything from simple reading comprehension to severe learning imparement. We obviously won't know about this till much later on.
- 77% have immune deficiency problems. This is due to them potentially being born without a Thymus. The Thymus is the part of a babies body that helps fight off infections while the rest of the body starts to develop ways to develop immunities. The Thymus actually shrinks and goes away over time, but when the children are young they are at a serious risk for many severe infections.
- 50% have hypocalcemia which is the body being unable to process calcium correctly. This leads to seizures and skeletal abnormalities. Supposedly Riley is processing calcium fine at the moment, so this may be one of the few pieces of good news right now.
- 37% have renal anomalies
- then there are some leftovers of potential hearing loss, growth hormone deficiency, autism, facial deformation and over 200 other issues.
Michele is being the strong one today as I have lost all comprehension of how to handle Riley's future. My concern is not for Riley as she will be who she is, but with my abilities as a father and how I am going to handle this. I am not known as having a ton of patience and I am struggling to help Zoey learn things as I can get frustrated - if my little flower has a learning disability I do not know how I will be as her father. I will certainly do my best, but I do not currently believe that my best is anywhere good enough. I will lean on my wife a great deal during this time, but I have serious self doubt. I am also scared for Riley - as a parent you have hopes for your child. These are already tough enough to reach as children and our society are awful to anything that is different. It could be as simple as a name, a speech issue, a birth mark and Riley may have speech issues and a facial deformation. How will I explain to her how horrible the world is going to be to her, just because she is different? I am hoping I somehow find these answers, although the darkness that is around my heart at the moment makes it awfully tough to see any light, nevermind the tunnel that my little one is in.
- 69% of 22q folks have palatal abnormalities - as of right now, the multiple people who have checked Riley Rose say that they feel a normal palate, but things could show up later or below the skin that they can feel now. The palatal abnormalities can lead to feeding problems and speech disorders.
- 70-90% have learning difficulties - this can be everything from simple reading comprehension to severe learning imparement. We obviously won't know about this till much later on.
- 77% have immune deficiency problems. This is due to them potentially being born without a Thymus. The Thymus is the part of a babies body that helps fight off infections while the rest of the body starts to develop ways to develop immunities. The Thymus actually shrinks and goes away over time, but when the children are young they are at a serious risk for many severe infections.
- 50% have hypocalcemia which is the body being unable to process calcium correctly. This leads to seizures and skeletal abnormalities. Supposedly Riley is processing calcium fine at the moment, so this may be one of the few pieces of good news right now.
- 37% have renal anomalies
- then there are some leftovers of potential hearing loss, growth hormone deficiency, autism, facial deformation and over 200 other issues.
Michele is being the strong one today as I have lost all comprehension of how to handle Riley's future. My concern is not for Riley as she will be who she is, but with my abilities as a father and how I am going to handle this. I am not known as having a ton of patience and I am struggling to help Zoey learn things as I can get frustrated - if my little flower has a learning disability I do not know how I will be as her father. I will certainly do my best, but I do not currently believe that my best is anywhere good enough. I will lean on my wife a great deal during this time, but I have serious self doubt. I am also scared for Riley - as a parent you have hopes for your child. These are already tough enough to reach as children and our society are awful to anything that is different. It could be as simple as a name, a speech issue, a birth mark and Riley may have speech issues and a facial deformation. How will I explain to her how horrible the world is going to be to her, just because she is different? I am hoping I somehow find these answers, although the darkness that is around my heart at the moment makes it awfully tough to see any light, nevermind the tunnel that my little one is in.
October 12, 2010 - 9:45 am
I came to the hospital this morning to meet with the Lactation specialist at Riley's bedsidem which is a good thing because right now my breasts are porn star huge.
I had good timing becasue Dr. Dudley arrived just after I did so I was able to get the morning report. Overall Riley is doing well, but she was spittng up again last night and that was making her fussy. Dr. Dudley had put Riley on Zantac starting this morning and they will be doing a continuous feed through the feeding tube through out the day. This in conjunction with the Zantac will hopefully settle down the reflux and give Riley's tummy a little rest. We are hoping to be back on bottle feedings by the end of the week. Also, Riley's calories have been increased from 24 to 26 which they achieve by increasing the concentratin, not the volume of formula. They may increase her some more, but they don't usually go over 30.
Riley's bilirubin levels have gone down too and we are hoping that she will be off the lights tonight, or tomorrow morning, depending on how her levels come back. She is still on the Lasix and will be until at least the time of the surgery. They will have to keep an eye on her electrolytes as the Lasix can affect that. My hope is that the Lasix will work great and give her heart a little break with all the pumping it needs to be done.
Her head CT scan is scheduled for tday, so we can see what is going on in her tiny nose.
I had good timing becasue Dr. Dudley arrived just after I did so I was able to get the morning report. Overall Riley is doing well, but she was spittng up again last night and that was making her fussy. Dr. Dudley had put Riley on Zantac starting this morning and they will be doing a continuous feed through the feeding tube through out the day. This in conjunction with the Zantac will hopefully settle down the reflux and give Riley's tummy a little rest. We are hoping to be back on bottle feedings by the end of the week. Also, Riley's calories have been increased from 24 to 26 which they achieve by increasing the concentratin, not the volume of formula. They may increase her some more, but they don't usually go over 30.
Riley's bilirubin levels have gone down too and we are hoping that she will be off the lights tonight, or tomorrow morning, depending on how her levels come back. She is still on the Lasix and will be until at least the time of the surgery. They will have to keep an eye on her electrolytes as the Lasix can affect that. My hope is that the Lasix will work great and give her heart a little break with all the pumping it needs to be done.
Her head CT scan is scheduled for tday, so we can see what is going on in her tiny nose.
Monday, October 11, 2010
10-11-10 9pm
So I got to hold Riley during her 8pm 'feeding'. They have to pull the contents of the stomach when they are doing tube feeding and Riley had digested all of her 5pm feeding. So that is more good news. Her and I just chilled out and stared at each other - she can be so intense when she is looking at you. Every nurse has also complimented her temperment as she has been poked and proded extensively, but she has barely said a peep about it. Her diaper was heavy with pee this time as they started her Lasix diuretic at 6pm - so this is already helping her get rid of some of this excess fluid around her lungs. Also her 8pm feeding had 10cc (out of 40cc) from mom - WAY TO PRODUCE MAMA!!!!!
I will probably be leaving the NICU around 10pm to go home, so unless something good or bad happens from here in the next hours no more updates till the morning.
I will probably be leaving the NICU around 10pm to go home, so unless something good or bad happens from here in the next hours no more updates till the morning.
10-11-10 7:30pm
Since I was updating all the bad news, I will now attempt to overupdate on any little thing that is good. Riley took all 40cc over the 1 hour period through her feeding tube and nothing has come back up. She has also been sleeping wonderfully on her belly with no real issues with her breathing or O2. Her heart rate keeps jumping up, but from my understanding that is to be expected. I will hopefully get to hold her in about a 1/2 hour and nothing could make a dad happier then holding his newest addition to his family.
10-11-10 5:45pm
So finally some moderate news. The cardiologist (Dr. Sabino) came by around 5pm and said that all her heart exams looked the same as they were on Friday - same is good. Here are the things that we learned from him:
1) The Ventricular Septal Defect that Riley has is not going to close on its own - which I guess these sometimes can. We didn't know that one of these could, so no loss to us there. We are going to have to prepare for surgery in 4-6 months to repair her VSD.
2) The valve that has on two flaps that is supposed to have three is not an issue now, but may be in the future. We don't know when in the future, but Riley will have to have a cardiologist for the rest of her life.
3) We will be putting Riley Rose on Lasix to get some of the excess fluid out from around her lungs which should help her breath better.
While the cardiologist was here, Dr. Dudley came by as well. At this time Riley was having some issues with reflux and the nurse and I mentioned that she only really had reflux coming out of one nostril (her left). Dr. Dudley did some quick exams and we found out that her right nostril may be smaller then the other. The palate is ok, but the opening of her nose might be small, which could also lead to her having difficulty breathing when she is feeding/having reflux. So we are going to get a CT scan on her nasal cavity and if there is a blockage then Dr. Dudley feels that it is a simple in and out type thing to clear it out, which would help her breath better. We will also be feeding her over an hour to help with her reflux - this is as opposed to the little one sucking down 40cc in 10 minutes when we were hand feeding her. Just like Mom always told us - rushing through eating is not a good thing for you, it took my 4 day old daughter to teach me something I've heard all my life.
Both the cardiology stuff and Dr. Dudley's stuff is to help her get home as the heart stuff is ok for now (obviously in relative nature). If she didn't have her heart issues Riley may still be having these breathing issues due to other things.
Considering it has been a really awful day, I am taking all the above as good news. Whether it is or isn't, it is going in the good column. Also, since the 2 docs have been here and gone, Riley Rose has been doing wonderfully.
Again - Michele and I want to thank you from the bottom of our hearts for all of the emails, phone calls, and posts. They are very much welcomed and helpful.
1) The Ventricular Septal Defect that Riley has is not going to close on its own - which I guess these sometimes can. We didn't know that one of these could, so no loss to us there. We are going to have to prepare for surgery in 4-6 months to repair her VSD.
2) The valve that has on two flaps that is supposed to have three is not an issue now, but may be in the future. We don't know when in the future, but Riley will have to have a cardiologist for the rest of her life.
3) We will be putting Riley Rose on Lasix to get some of the excess fluid out from around her lungs which should help her breath better.
While the cardiologist was here, Dr. Dudley came by as well. At this time Riley was having some issues with reflux and the nurse and I mentioned that she only really had reflux coming out of one nostril (her left). Dr. Dudley did some quick exams and we found out that her right nostril may be smaller then the other. The palate is ok, but the opening of her nose might be small, which could also lead to her having difficulty breathing when she is feeding/having reflux. So we are going to get a CT scan on her nasal cavity and if there is a blockage then Dr. Dudley feels that it is a simple in and out type thing to clear it out, which would help her breath better. We will also be feeding her over an hour to help with her reflux - this is as opposed to the little one sucking down 40cc in 10 minutes when we were hand feeding her. Just like Mom always told us - rushing through eating is not a good thing for you, it took my 4 day old daughter to teach me something I've heard all my life.
Both the cardiology stuff and Dr. Dudley's stuff is to help her get home as the heart stuff is ok for now (obviously in relative nature). If she didn't have her heart issues Riley may still be having these breathing issues due to other things.
Considering it has been a really awful day, I am taking all the above as good news. Whether it is or isn't, it is going in the good column. Also, since the 2 docs have been here and gone, Riley Rose has been doing wonderfully.
Again - Michele and I want to thank you from the bottom of our hearts for all of the emails, phone calls, and posts. They are very much welcomed and helpful.
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