I know that people think that I'm crazy. They also think that I'm way to big to be due so far away, but that's a post for another day.
I am a little crazy, I guess. I need to do things ahead of time so I don't worry my own head off. I'm remarkably resilient, when I know that I've done all that I can. So I often fill my time before big events with stuff. Lists...tasks...to do's...etc. It works for me.
Last weekend I did a big freezer meal project. I had purchased the book Fix, Freeze, Feast and pulled some recipes that seemed interesting and easy, hoofed my way to BJs to spend an incredible amount of money at one checkout (ouch!), and then spent 6 hours in the kitchen cooking.
In the end, I had aching hips and feet, but about 25 main course dinners ready for when Little Man arrives. I'm going to do a few more (some simple pastas and batches of tomato sauce), but for now I'm pleased with the result. The final choices were...
Chicken Curry with Peas -- 3 dinners
Pork Ragout (crockpot) -- 3 large dinners
Royal Thai Chicken Thighs -- 5 dinners
Beef Fajita Setups -- 4 dinners
Beef Barley Soup (crockpot) -- 4 dinners
Mariachi Chicken Rolls (this still needs to be assembled this week) -- 6 dinners
Granted, it was a little early to do the project, but I really wanted to start moving on this and not have it hang over my summer. It was tons of work, but I actually feel like I'm starting to get close to being ready. Too soon? Sure! But I work at a school and come Labor Day (ha) I will be swamped with more work than I can shake a stick at. Having our home ready for Little Man in advance is how I'm going to quiet the voices in my head.
Next step is to get Olivia's big girl furniture delivered (tomorrow) and her room set up. The closet is complete, so it's a matter of just moving over her clothes and starting this whole big-girl-bed transition. (Fun times!) Then time to update the nursery.
The other thing knocking around in my head is maybe planning a mini-trip for us before the summer is up. Something small (just a weekend?) to maybe a lake. A little retreat for us three before we become four.
Tuesday, August 7, 2012
Monday, August 6, 2012
UPDATED: First Round of Questions w/Answers
Just for future reference, here's what we learned from our visit...The fonts are all messed up, but you get the idea.
Prenatal
Who follows our prenatal care for:
1. gestational diabetes management continue with Main Line perinatal care
2. tracking growth will be part of monthly visits during regular ultrasound (distinct from echo)
3. non-stress tests this will be ordered by local OB and like to begin around 32 weeks; frequency each week will be determined by status of diabetes management; can be done at Paoli hospital through Main Line perinatal care
4. regular OB appointments continue with local OB until week 37; also continue to see CHOP OB for monthly visits (at same time as echo/ultrasounds); exclusively see CHOP OB starting at 37 weeks
Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)? No.
Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete. Is there any risk of spina bifida not already being discovered? Not a concern - ruled out in ultrasounds
How do we find out whether we will be able to deliver at the SDU? Today -- yes, approved for delivery.
Are there any new risks for pre-term labor/delivery because of the heart condition? No.
Are there changes that could happen in utero that would alter his diagnosis and/or prognoses? Yes, but no changes at this moment. Likelihood of surprises being seen on later ultrasounds grow more and more unlikely as weeks progress. Doctor made it seem like an outside chance.
This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches. Are there precautions I should be taking to help avoid preterm labor differently than last time? Did not get to ask this question -- our OB exam was cancelled and moved to next month, when we'll see a midwife/nurse practitioner
Delivery
When will the c-section be planned? 39 weeks; no specific date yet
Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time? No.
Will family be able to see us in the SDU recovery room after delivery? Will they be able to see the baby? Did not ask.
How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks? They will work with what we need for employment purposes. Seemed to think that 10 weeks disability would not be unreasonable.
How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted? Possibly. Really depends on getting him stable and the number of tubes that he'll need to be connected to and what method of connection. If the tubes allow for holding, there is a priority for parent contact.
What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding? This is driven by what his immediate medical needs are at the moment. If tubes and IVs allow, direct contact is encouraged for both parents. Lisa (program manager) acknowledged the importance of kangaroo care and its health benefits.
How is pumping handled? Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk? Are hospital-grade pumps available for rental? Cost? These are questions for the cardiac lactation consultant (she is PhD level and extremely knowledgeable). We will have a pre-delivery consult with her as the delivery approached (timing?) and then work closely with her after delivery. There are pumping rooms and machines available throughout hospital and lots of support.
Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition? What is your recommendation re: cord blood and/or cord cell banking? No. Research is limited in this area and existing research does not point to the usefulness of cord blood or cells. Future research could very well lead to other areas of harvesting (e.g., bone marrow, blood cells). The cardiologist did not recommend banking at this time for this reason and the fact that banking for future use in growing valves would need to be done in a more highly regulated way than available in current banking standards.
Surgery + Recovery
How soon after birth will the surgery likely take place? Within one week. Cannot tell if this means 2 days or 7 days. Still unclear.
How will they keep him alive between birth and surgery? He will likely be able to be stabilized without use of considerable intervention because of the nature of his defects. He may be on oxygen and have IV lines placed, but the majority of the lines attached to him will be for monitoring purposes, rather than the administration of medication.
How long is surgery? How long will he be on bypass? This will be discussed with the surgical consult, later in the process (when was unclear).
What is the typical recovery time frame between surgery and release from hospital? 2-3 weeks post surgery (not delivery)
What are the more common complications from this surgery? Feeding issues, bleeding, infection, and change of heart rhythm
Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths? Typically poorly functioning truncal valve or an infection secondary to the surgery
What is the likelihood that an additional surgery(ies) will be needed again in the first year? Assuming nothing unexpected, additional procedures is unlikely.
What feeding issues might he face? What approaches are used to minimize those risks? We didn't dig into this topic yet, but cardiologist said it's unclear why CHD open heart babies struggle with feeding, but many do. His feeding issues will likely be the reason why he might have a longer stay after surgery (assuming no medical issues like bleeding or infection).
Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery? After? Are there restrictions on these visits (duration, times of day, etc)? Yes, depending on his health and our preference.
0-6 Months
What will those first two weeks look like? How do families plan ahead for care for older sibilings? Didn't get a chance to really ask this question, mainly because the program manager was pushing the process forward because of time. Sense that this could be discussed more with the social worker in the future.
How do parents who both work typically manage the first 6 months? Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer? A 3- or 4-month return to work (and full time daycare) would be reasonable, but depends highly on his progress.
Will he be able to attend daycare? Yes. Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital? 3 or 4 months, depending on progress Are there questions we should be asking our facility about their training, experience, etc? He might need to go home with feeding tubes, so experience with this is helpful. The doctor also mentioned medical daycare as an option, which was confusing since they tend to be for those children who have much more complex needs. Will continue to follow upon this, possibly with the social worker.
After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare? If so, usually for how long? Not clear on the answer for this. Our notes have that "yes," she could be pulled out, but I don't remember the timing or circumstance for pulling. Should re-ask this at our next visit... .
What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)? No.
Living with CHD
How does this heart defect affect his life expectancy? Hard to say because only recently (~ 40 years) started doing the surgery. Cardiologist didn't see any reason why this would necessarily shorten his life expectancy, so long as nothing emerged that was unexpected.
Will he be on long-term maintenance medication? Unlikely.
Will he have any type of monitoring implant (e.g., pacemaker)? Unlikely
Are there secondary effects of OHS and/or CHD on his development? e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc. Quite possibly, but unclear exactly what. There are generalizations that can be made about behavioral and learning development in children who have CHD and in children who have OHS at an early age. The cardiologist explained that it's unclear right now whether these are differences due to the defect (or any underlying cause of the defect) or the impact of surgery and/or bypass. I feel this is going to be a line of questioning that will continue to evolve and likely need some research on our end, as everyone in the room wanted to stay away from specifics. (Which I understand, since any differences can manifest in each individual child, well, differently.)
Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc? Unlikely, but treatment of those conditions might be different based on his cardiac status at the time the issue arises. For example, albuterol may not be a medication that he could use for asthma maintenance in the same way as others because it might interfere with electrical signals across the heart tissue. But generally, he'll tackle illnesses like any other HH child.
Prenatal
Who follows our prenatal care for:
1. gestational diabetes management continue with Main Line perinatal care
2. tracking growth will be part of monthly visits during regular ultrasound (distinct from echo)
3. non-stress tests this will be ordered by local OB and like to begin around 32 weeks; frequency each week will be determined by status of diabetes management; can be done at Paoli hospital through Main Line perinatal care
4. regular OB appointments continue with local OB until week 37; also continue to see CHOP OB for monthly visits (at same time as echo/ultrasounds); exclusively see CHOP OB starting at 37 weeks
Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)? No.
Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete. Is there any risk of spina bifida not already being discovered? Not a concern - ruled out in ultrasounds
How do we find out whether we will be able to deliver at the SDU? Today -- yes, approved for delivery.
Are there any new risks for pre-term labor/delivery because of the heart condition? No.
Are there changes that could happen in utero that would alter his diagnosis and/or prognoses? Yes, but no changes at this moment. Likelihood of surprises being seen on later ultrasounds grow more and more unlikely as weeks progress. Doctor made it seem like an outside chance.
This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches. Are there precautions I should be taking to help avoid preterm labor differently than last time? Did not get to ask this question -- our OB exam was cancelled and moved to next month, when we'll see a midwife/nurse practitioner
Delivery
When will the c-section be planned? 39 weeks; no specific date yet
Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time? No.
Will family be able to see us in the SDU recovery room after delivery? Will they be able to see the baby? Did not ask.
How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks? They will work with what we need for employment purposes. Seemed to think that 10 weeks disability would not be unreasonable.
How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted? Possibly. Really depends on getting him stable and the number of tubes that he'll need to be connected to and what method of connection. If the tubes allow for holding, there is a priority for parent contact.
What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding? This is driven by what his immediate medical needs are at the moment. If tubes and IVs allow, direct contact is encouraged for both parents. Lisa (program manager) acknowledged the importance of kangaroo care and its health benefits.
How is pumping handled? Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk? Are hospital-grade pumps available for rental? Cost? These are questions for the cardiac lactation consultant (she is PhD level and extremely knowledgeable). We will have a pre-delivery consult with her as the delivery approached (timing?) and then work closely with her after delivery. There are pumping rooms and machines available throughout hospital and lots of support.
Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition? What is your recommendation re: cord blood and/or cord cell banking? No. Research is limited in this area and existing research does not point to the usefulness of cord blood or cells. Future research could very well lead to other areas of harvesting (e.g., bone marrow, blood cells). The cardiologist did not recommend banking at this time for this reason and the fact that banking for future use in growing valves would need to be done in a more highly regulated way than available in current banking standards.
Surgery + Recovery
How soon after birth will the surgery likely take place? Within one week. Cannot tell if this means 2 days or 7 days. Still unclear.
How will they keep him alive between birth and surgery? He will likely be able to be stabilized without use of considerable intervention because of the nature of his defects. He may be on oxygen and have IV lines placed, but the majority of the lines attached to him will be for monitoring purposes, rather than the administration of medication.
How long is surgery? How long will he be on bypass? This will be discussed with the surgical consult, later in the process (when was unclear).
What is the typical recovery time frame between surgery and release from hospital? 2-3 weeks post surgery (not delivery)
What are the more common complications from this surgery? Feeding issues, bleeding, infection, and change of heart rhythm
Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths? Typically poorly functioning truncal valve or an infection secondary to the surgery
What is the likelihood that an additional surgery(ies) will be needed again in the first year? Assuming nothing unexpected, additional procedures is unlikely.
What feeding issues might he face? What approaches are used to minimize those risks? We didn't dig into this topic yet, but cardiologist said it's unclear why CHD open heart babies struggle with feeding, but many do. His feeding issues will likely be the reason why he might have a longer stay after surgery (assuming no medical issues like bleeding or infection).
Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery? After? Are there restrictions on these visits (duration, times of day, etc)? Yes, depending on his health and our preference.
0-6 Months
What will those first two weeks look like? How do families plan ahead for care for older sibilings? Didn't get a chance to really ask this question, mainly because the program manager was pushing the process forward because of time. Sense that this could be discussed more with the social worker in the future.
How do parents who both work typically manage the first 6 months? Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer? A 3- or 4-month return to work (and full time daycare) would be reasonable, but depends highly on his progress.
Will he be able to attend daycare? Yes. Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital? 3 or 4 months, depending on progress Are there questions we should be asking our facility about their training, experience, etc? He might need to go home with feeding tubes, so experience with this is helpful. The doctor also mentioned medical daycare as an option, which was confusing since they tend to be for those children who have much more complex needs. Will continue to follow upon this, possibly with the social worker.
After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare? If so, usually for how long? Not clear on the answer for this. Our notes have that "yes," she could be pulled out, but I don't remember the timing or circumstance for pulling. Should re-ask this at our next visit... .
What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)? No.
Living with CHD
How does this heart defect affect his life expectancy? Hard to say because only recently (~ 40 years) started doing the surgery. Cardiologist didn't see any reason why this would necessarily shorten his life expectancy, so long as nothing emerged that was unexpected.
Will he be on long-term maintenance medication? Unlikely.
Will he have any type of monitoring implant (e.g., pacemaker)? Unlikely
Are there secondary effects of OHS and/or CHD on his development? e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc. Quite possibly, but unclear exactly what. There are generalizations that can be made about behavioral and learning development in children who have CHD and in children who have OHS at an early age. The cardiologist explained that it's unclear right now whether these are differences due to the defect (or any underlying cause of the defect) or the impact of surgery and/or bypass. I feel this is going to be a line of questioning that will continue to evolve and likely need some research on our end, as everyone in the room wanted to stay away from specifics. (Which I understand, since any differences can manifest in each individual child, well, differently.)
Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc? Unlikely, but treatment of those conditions might be different based on his cardiac status at the time the issue arises. For example, albuterol may not be a medication that he could use for asthma maintenance in the same way as others because it might interfere with electrical signals across the heart tissue. But generally, he'll tackle illnesses like any other HH child.
Thursday, August 2, 2012
Update
So much to update! Our second consult went well at CHOP. In the moment (and for much of the rest of the day), I was stuck in a funk and finally realized that it had little to do with the news we received and more to do with the stark reminder that all of this is happening. Bygones. Moving on.
Good news #1: Diagnosis has not changed. Still truncus type 1, which is the easiest of the types to address through surgery. VSD is still there, but no changes. And, thankfully, no surprises. I don't think I'll ever get an echo during this process and not worry about finding something novel that wasn't seen before because of the limitations.
Good news #2: The truncus valve is appearing to be healthy at this moment. For some kids, it could be thickened or leaking, both of which are problematic. From my reading out there on The Nets, I know that this can change after the surgery and the trunk (in its new role as aorta) has new pressure and flow demands. But, for now, it's good news.
Good news #3: We've been approved to delivery in the Special Delivery Unit. (No, Ice T will not be our OB.) It's the only unit of its kind in the country and we are very lucky to get this approval. It brings up some slight complications, but more on that later.
Good news #4: He's growing on target. Not too big (a worry of the GDM) and not too small (a worry of the CHD). At 24 weeks 2 days he was weighing in at 1 pound 7 oz. Normal is good. Very good.
Good news #5: This is actually GREAT news for mama. Cardiologist said that he would likely be appropriate for and safe in a daycare environment within 3 or 4 months after delivery. Wahoo! Don't get me wrong -- I'm not pushing this poor kiddo out the door. But, Olivia has thrived in her daycare and we trust them immensely. I want to make sure that Little Man has all the benefits of that care, stimulation, socialization, and structure that Olivia has had over the last couple years. Not to mention the fact that I'd like to keep my career, thankyouverymuch!
Good news #6: Our insurance will be footing the bill for ALL of this adventure. That's the special delivery costs, the prenatal care, the testing, and finally the open heart surgery and recovery. All we have to do is finish up paying our $4k out of pocket (which is almost done thanks to IVF earlier this year) and focus on his health.
Bad news #1: The OB wants me to "move" to the city for weeks 37-39 so that I can be within 20 minutes of the delivery unit. He didn't go into detail about what was driving this decision other than his concern that I might land in a regional hospital with a fast and furious labor and have to airlift little one to CHOP and not have the benefits of the SDU. I get it, but I'm not convinced. It would be hugely disruptive for everyone in the family and my work -- perhaps even harder than balancing the post delivery period of time because I would not be around to help Michael out. Olivia will be all messed up and I'll be miserable because I don't get to spend those precious last weeks with her before we are a family of four. No -- the OB and I are going to keep talking about this and look for other solutions. More to come... .
Bad news #2: The ultrasound tech spent a lot of time imaging our umbilical cord, which we later found out was for good reason. Turns out it's inserted incorrectly. It's called velamentous cord insertion and can be relatively harmless or quite dangerous, depending on the positioning with relation to the cervix. Right now, mine is in a safe place, far away from the cervix. If it migrates closer, it becomes scary enough to possibly warrant a preventative hospital stay or an earlier induction to avoid this from rupturing and causing the baby to die in utero. All very scary, so we're all keeping an eye on it.
Bad news #3: No coordination. Sigh. Seems that there is very little coordination or combining of visits for this coming three months. I need to see my local OB until 37 weeks, at which time I switch completely over to CHOP. I will also see the CHOP OB during this time. I need to keep seeing my perinatologist for monitoring my sugars and adjusting insulin doses (but thankfully that is largely done over the phone and not in person). I'll need to plan on the usual non-stress tests that many women get in the last months of pregnancy, but should expect more of them (2 x week) earlier. I also need to see the cardiology team regularly at CHOP, too. The CHOP folks will coordinate their time together and I'm grateful for that, but it does mean full days in the city (away from work) and lots of time on the road. Looks like I'm going to be doing a lot of driving to and from the doctors' offices this summer!!
All in all, it was a good visit. At the time, I was freaked out and depressed, frankly, because of the reminder of how serious and out of our control this is. But the more I talk about it and share the news, the more I realize that I have a lot to be thankful for throughout this process.
Right now, my big tasks are to support Michael so he can finish up the big girl room and get started on updating the nursery. I'm also going to try to do a couple things each week that are positive things that look forward to when a healthy baby comes home from the hospital. Yesterday, I finally picked out my Mother's Day present of a new (and bigger!) diaper bag that is ready to hold enough stuff to care for two young kiddos. I also picked up a cuddly blanket and hangers for his closet. This weekend, I'm hoping to venture out to the Carter's outlet and get some clothes for this little tyke.
Onward and upward!
Good news #1: Diagnosis has not changed. Still truncus type 1, which is the easiest of the types to address through surgery. VSD is still there, but no changes. And, thankfully, no surprises. I don't think I'll ever get an echo during this process and not worry about finding something novel that wasn't seen before because of the limitations.
Good news #2: The truncus valve is appearing to be healthy at this moment. For some kids, it could be thickened or leaking, both of which are problematic. From my reading out there on The Nets, I know that this can change after the surgery and the trunk (in its new role as aorta) has new pressure and flow demands. But, for now, it's good news.
Good news #3: We've been approved to delivery in the Special Delivery Unit. (No, Ice T will not be our OB.) It's the only unit of its kind in the country and we are very lucky to get this approval. It brings up some slight complications, but more on that later.
Good news #4: He's growing on target. Not too big (a worry of the GDM) and not too small (a worry of the CHD). At 24 weeks 2 days he was weighing in at 1 pound 7 oz. Normal is good. Very good.
Good news #5: This is actually GREAT news for mama. Cardiologist said that he would likely be appropriate for and safe in a daycare environment within 3 or 4 months after delivery. Wahoo! Don't get me wrong -- I'm not pushing this poor kiddo out the door. But, Olivia has thrived in her daycare and we trust them immensely. I want to make sure that Little Man has all the benefits of that care, stimulation, socialization, and structure that Olivia has had over the last couple years. Not to mention the fact that I'd like to keep my career, thankyouverymuch!
Good news #6: Our insurance will be footing the bill for ALL of this adventure. That's the special delivery costs, the prenatal care, the testing, and finally the open heart surgery and recovery. All we have to do is finish up paying our $4k out of pocket (which is almost done thanks to IVF earlier this year) and focus on his health.
Bad news #1: The OB wants me to "move" to the city for weeks 37-39 so that I can be within 20 minutes of the delivery unit. He didn't go into detail about what was driving this decision other than his concern that I might land in a regional hospital with a fast and furious labor and have to airlift little one to CHOP and not have the benefits of the SDU. I get it, but I'm not convinced. It would be hugely disruptive for everyone in the family and my work -- perhaps even harder than balancing the post delivery period of time because I would not be around to help Michael out. Olivia will be all messed up and I'll be miserable because I don't get to spend those precious last weeks with her before we are a family of four. No -- the OB and I are going to keep talking about this and look for other solutions. More to come... .
Bad news #2: The ultrasound tech spent a lot of time imaging our umbilical cord, which we later found out was for good reason. Turns out it's inserted incorrectly. It's called velamentous cord insertion and can be relatively harmless or quite dangerous, depending on the positioning with relation to the cervix. Right now, mine is in a safe place, far away from the cervix. If it migrates closer, it becomes scary enough to possibly warrant a preventative hospital stay or an earlier induction to avoid this from rupturing and causing the baby to die in utero. All very scary, so we're all keeping an eye on it.
Bad news #3: No coordination. Sigh. Seems that there is very little coordination or combining of visits for this coming three months. I need to see my local OB until 37 weeks, at which time I switch completely over to CHOP. I will also see the CHOP OB during this time. I need to keep seeing my perinatologist for monitoring my sugars and adjusting insulin doses (but thankfully that is largely done over the phone and not in person). I'll need to plan on the usual non-stress tests that many women get in the last months of pregnancy, but should expect more of them (2 x week) earlier. I also need to see the cardiology team regularly at CHOP, too. The CHOP folks will coordinate their time together and I'm grateful for that, but it does mean full days in the city (away from work) and lots of time on the road. Looks like I'm going to be doing a lot of driving to and from the doctors' offices this summer!!
* * *
All in all, it was a good visit. At the time, I was freaked out and depressed, frankly, because of the reminder of how serious and out of our control this is. But the more I talk about it and share the news, the more I realize that I have a lot to be thankful for throughout this process.
Right now, my big tasks are to support Michael so he can finish up the big girl room and get started on updating the nursery. I'm also going to try to do a couple things each week that are positive things that look forward to when a healthy baby comes home from the hospital. Yesterday, I finally picked out my Mother's Day present of a new (and bigger!) diaper bag that is ready to hold enough stuff to care for two young kiddos. I also picked up a cuddly blanket and hangers for his closet. This weekend, I'm hoping to venture out to the Carter's outlet and get some clothes for this little tyke.
Onward and upward!
Friday, July 27, 2012
Our first round of questions
It's been almost a month since I've been to CHOP and, in that time, we've learned a considerable amount about truncus arteriosus, open heart surgery, recovery, and loving your way through the process.
But there are still a LOT of questions on our minds.
So far, these are the ones we're bringing with us for our second consult on Monday. There might be a few last minute additions, but generally this is where our headspace is right now.
Prenatal
Who follows our prenatal care for:
1. gestational diabetes management
2. tracking growth
3. non-stress tests
4. regular OB appointments
Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?
Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete. Is there any risk of spina bifida not already being discovered?
How do we find out whether we will be able to deliver at the SDU?
Are there any new risks for pre-term labor/delivery because of the heart condition?
Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?
This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches. Are there precautions I should be taking to help avoid preterm labor differently than last time?
Delivery
When will the c-section be planned?
Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time?
Will family be able to see us in the SDU recovery room after delivery? Will they be able to see the baby?
How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks?
How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?
What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding?
How is pumping handled? Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk? Are hospital-grade pumps available for rental? Cost?
Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition? What is your recommendation re: cord blood and/or cord cell banking?
Surgery + Recovery
How soon after birth will the surgery likely take place?
How will they keep him alive between birth and surgery?
How long is surgery? How long will he be on bypass?
What is the typical recovery time frame between surgery and release from hospital?
What are the more common complications from this surgery?
Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths?
What is the likelihood that an additional surgery(ies) will be needed again in the first year?
What feeding issues might he face? What approaches are used to minimize those risks?
Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery? After? Are there restrictions on these visits (duration, times of day, etc)?
0-6 Months
What will those first two weeks look like? How do families plan ahead for care for older sibilings?
How do parents who both work typically manage the first 6 months? Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer?
Will he be able to attend daycare? Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital? Are there questions we should be asking our facility about their training, experience, etc?
After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare? If so, usually for how long?
What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)?
Living with CHD
How does this heart defect affect his life expectancy?
Will he be on long-term maintenance medication?
Will he have any type of monitoring implant (e.g., pacemaker)?
Are there secondary effects of OHS and/or CHD on his development? e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.
Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc?
But there are still a LOT of questions on our minds.
So far, these are the ones we're bringing with us for our second consult on Monday. There might be a few last minute additions, but generally this is where our headspace is right now.
Prenatal
Who follows our prenatal care for:
1. gestational diabetes management
2. tracking growth
3. non-stress tests
4. regular OB appointments
Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?
Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete. Is there any risk of spina bifida not already being discovered?
How do we find out whether we will be able to deliver at the SDU?
Are there any new risks for pre-term labor/delivery because of the heart condition?
Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?
This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches. Are there precautions I should be taking to help avoid preterm labor differently than last time?
Delivery
When will the c-section be planned?
Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time?
Will family be able to see us in the SDU recovery room after delivery? Will they be able to see the baby?
How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks?
How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?
What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding?
How is pumping handled? Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk? Are hospital-grade pumps available for rental? Cost?
Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition? What is your recommendation re: cord blood and/or cord cell banking?
Surgery + Recovery
How soon after birth will the surgery likely take place?
How will they keep him alive between birth and surgery?
How long is surgery? How long will he be on bypass?
What is the typical recovery time frame between surgery and release from hospital?
What are the more common complications from this surgery?
Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths?
What is the likelihood that an additional surgery(ies) will be needed again in the first year?
What feeding issues might he face? What approaches are used to minimize those risks?
Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery? After? Are there restrictions on these visits (duration, times of day, etc)?
0-6 Months
What will those first two weeks look like? How do families plan ahead for care for older sibilings?
How do parents who both work typically manage the first 6 months? Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer?
Will he be able to attend daycare? Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital? Are there questions we should be asking our facility about their training, experience, etc?
After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare? If so, usually for how long?
What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)?
Living with CHD
How does this heart defect affect his life expectancy?
Will he be on long-term maintenance medication?
Will he have any type of monitoring implant (e.g., pacemaker)?
Are there secondary effects of OHS and/or CHD on his development? e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.
Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc?
Tuesday, July 24, 2012
Handling
"How are you handling the news now that you've had more time?"
I stared at the question in my inbox from a friend. I don't know the answer, really. How am I handling things? Probably well on some fronts, not well on others. I can talk about it without crying. I feel stronger when I share it outloud with others. I have kept busy with safe things like planning meals and picking out curtains.
But last night I slept on our couch. Had a fight with Michael about how to process -- and he had bare criticism for my approach and no patience for my feelings. I felt alone and received the message loud and clear. Some of this is ugly and some folks aren't ready (or never will be) for your ugly. Figure out where to put it in the mean time.
I feel alone a lot. Searching. My sister has been great, but she's really the only person I've had to talk to outside of my marriage. My "best" friend has had a rough year (and that's minimizing the reality) and simply isn't available for me. My Dad is creating distance because he's scared and doesn't know what to say, changing the topic when it's raised and responding with silence. My other close friends are scattered -- on vacation or in far off lands.
There's not much to lean on, so I just don't lean.
I also don't sleep much. Who knows if it's stress or the pregnancy. I struggle with fatigue and anxiety every day. I have a hard time finding the energy for great food choices to help manage my diabetes, opting for easy solutions instead. I'm distracted at work. I'm concerned about money. And my self esteem is in the crapper thanks to a bigger pregnancy and my constant failure to find the time to regularly exercise.
"How am I handing things." Sigh. Depends on the day, I guess. I get up every day and make the most of this, knowing that it's going to get harder but frustrated that there's nobody who is able to (or willing to) acknowledge how hard this will be. I'm there for my daughter and keep my best smile on my face and lightness to my voice when we're together. I go to work and do the best I can. I watch our new reality strain our marriage and insert distance between me and my husband.
Truth is? I don't know the answer. Today, I just don't know.
I stared at the question in my inbox from a friend. I don't know the answer, really. How am I handling things? Probably well on some fronts, not well on others. I can talk about it without crying. I feel stronger when I share it outloud with others. I have kept busy with safe things like planning meals and picking out curtains.
But last night I slept on our couch. Had a fight with Michael about how to process -- and he had bare criticism for my approach and no patience for my feelings. I felt alone and received the message loud and clear. Some of this is ugly and some folks aren't ready (or never will be) for your ugly. Figure out where to put it in the mean time.
I feel alone a lot. Searching. My sister has been great, but she's really the only person I've had to talk to outside of my marriage. My "best" friend has had a rough year (and that's minimizing the reality) and simply isn't available for me. My Dad is creating distance because he's scared and doesn't know what to say, changing the topic when it's raised and responding with silence. My other close friends are scattered -- on vacation or in far off lands.
There's not much to lean on, so I just don't lean.
I also don't sleep much. Who knows if it's stress or the pregnancy. I struggle with fatigue and anxiety every day. I have a hard time finding the energy for great food choices to help manage my diabetes, opting for easy solutions instead. I'm distracted at work. I'm concerned about money. And my self esteem is in the crapper thanks to a bigger pregnancy and my constant failure to find the time to regularly exercise.
"How am I handing things." Sigh. Depends on the day, I guess. I get up every day and make the most of this, knowing that it's going to get harder but frustrated that there's nobody who is able to (or willing to) acknowledge how hard this will be. I'm there for my daughter and keep my best smile on my face and lightness to my voice when we're together. I go to work and do the best I can. I watch our new reality strain our marriage and insert distance between me and my husband.
Truth is? I don't know the answer. Today, I just don't know.
Friday, July 20, 2012
Reality
Nothing like crying to reality tv. Lots of grace in that, for sure.
Before my wedding, I watched lots of bride programming. Before buying our first house, I watched lots of home beautiful programming. Before my babies, I'm like a moth to the flame of baby programming. I can't help it.
Last night, I found myself crying during Pregnant in Heels when an excited couple were holding their brand new baby after birth, cuddling and oh'ing and ah'ing. It hit me...we don't get to do that this time. I don't know how it will actually be orchestrated, but those wonderful hours and days following delivery where this tiny swaddled ball of love is tucked into your arms to feed and generally look cute will not be part of the picture. Maybe I'll get to hold him. What day, how long, how often...all still up in the air.
It breaks my heart. It was the first moment where I realized quite so clearly how different this will be. And I'm sad for that in a very real, heavy-in-the-chest kind of way. I feel robbed, like this experience has been taken away from me when, in reality, it never was ours to begin with. But it still hurts. Enough to sob a little curled up in bed watching Bravo.
Before my wedding, I watched lots of bride programming. Before buying our first house, I watched lots of home beautiful programming. Before my babies, I'm like a moth to the flame of baby programming. I can't help it.
Last night, I found myself crying during Pregnant in Heels when an excited couple were holding their brand new baby after birth, cuddling and oh'ing and ah'ing. It hit me...we don't get to do that this time. I don't know how it will actually be orchestrated, but those wonderful hours and days following delivery where this tiny swaddled ball of love is tucked into your arms to feed and generally look cute will not be part of the picture. Maybe I'll get to hold him. What day, how long, how often...all still up in the air.
It breaks my heart. It was the first moment where I realized quite so clearly how different this will be. And I'm sad for that in a very real, heavy-in-the-chest kind of way. I feel robbed, like this experience has been taken away from me when, in reality, it never was ours to begin with. But it still hurts. Enough to sob a little curled up in bed watching Bravo.
Thursday, July 19, 2012
Forming a plan
I do well with plans. Everyone I know points it out...sometimes as a compliment, sometimes as a complaint. But the reality is that that's how my brain works. I need to know the variables and goals, then I get to work. Otherwise I get to going crazy. My choice.
Had an epiphany last night while driving home from work. My hands might be tied with regard to Little Man's health right now, but they're not tied completely. What I can do is prepare our home and our lives for his arrival, knowing now that it will look a little different.
Even before we knew about his heart needs, I had a running list of things to do to before he arrived...finish big girl room, make the nursery more boy-like, get the basement organized, make some freezer meals. Nothing crazy, but a full plate of ideas to make having 2 under 2 more manageable.
Now I suspect I will need a higher level of organizing to get through. Instead of just having some dinners on the fly, I'm going to be that those first weeks of juggling Olivia at home and us at the hospital will be controlled chaos. A big menu of healthy, easy, frozen meals is a must for us and those who come in to help out with O.
I always planned to do a trip to BJs to stock up on essentials to save myself a trip or two to the store. Now I suspect those trips will be pushed later and later and a more considerable stock of supplies might be needed. And maybe a rack in the basement on which to store things, like tissues, tp/pt, canned goods, diapers, wipes, etc. Our upstairs closets are just not going to be big enough anymore!
And it runs deeper than just these things. I need to have our $%^& in order. With finances, with the house, with the daycare situation (for O and hopefully, at some point, for LM), with planning O's 2nd birthday, which will arrive mere days after LM has surgery. All of these things take time and energy. Lots of it!
Right now, we have 113 days until his currently projected arrival date. Time to make a list, delegate, and start tracking progress on the fridge. My job in the next few months is to get our clan ready for its next arrival. Now where is my BJs card again?
Had an epiphany last night while driving home from work. My hands might be tied with regard to Little Man's health right now, but they're not tied completely. What I can do is prepare our home and our lives for his arrival, knowing now that it will look a little different.
Even before we knew about his heart needs, I had a running list of things to do to before he arrived...finish big girl room, make the nursery more boy-like, get the basement organized, make some freezer meals. Nothing crazy, but a full plate of ideas to make having 2 under 2 more manageable.
Now I suspect I will need a higher level of organizing to get through. Instead of just having some dinners on the fly, I'm going to be that those first weeks of juggling Olivia at home and us at the hospital will be controlled chaos. A big menu of healthy, easy, frozen meals is a must for us and those who come in to help out with O.
I always planned to do a trip to BJs to stock up on essentials to save myself a trip or two to the store. Now I suspect those trips will be pushed later and later and a more considerable stock of supplies might be needed. And maybe a rack in the basement on which to store things, like tissues, tp/pt, canned goods, diapers, wipes, etc. Our upstairs closets are just not going to be big enough anymore!
And it runs deeper than just these things. I need to have our $%^& in order. With finances, with the house, with the daycare situation (for O and hopefully, at some point, for LM), with planning O's 2nd birthday, which will arrive mere days after LM has surgery. All of these things take time and energy. Lots of it!
Right now, we have 113 days until his currently projected arrival date. Time to make a list, delegate, and start tracking progress on the fridge. My job in the next few months is to get our clan ready for its next arrival. Now where is my BJs card again?
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