So, today I got back in the pool.
I'm letting that sink in a bit, because it feels really monumental to me. Let me explain.
It's great, of course, to get some exercise in while pregnant and swimming is a lovely low impact way to blahblahblah. We all know this stuff. Going for a swim does great things for my el prego self...period. Duh.
But that's not really why it feels so monumental. It feels like more because it's a return to something that I loved so much, long before my love for Olivia or Little Man even existed. Swimming was one of the ways that I proved to myself that I could do things...valuable things with my body. I spent many years ignoring or purposefully breaking down my body, pretending that I didn't care. An ignorant, blase approach to my own finite gifts.
And then I began hurting. Much of my pain was emotional, but it surfaced physically. I ached. I developed skin rashes. I started weezing and it turned into full blown asthma. I was allergic to everything. I avoided stairs and bathing suits and curvy dresses. Then I started avoiding people and places and, well, life. It didn't happen over night, but one day I woke up and realized that the most beautiful things about me were in tatters on the floor by my feet, grey and shriveled from misuse.
So, among other things, I started to move. I bought a pair of running shoes and started running the length of blocks, then 1/4 miles, then a whole mile in a row. I remember that day. I remember calling my future husband...whom I literally had just met the week before...and confided in him that I just ran a full mile in a row without stopping and I was so proud. And he didn't think I was a loser. I knew he was the one. I could be broken in front of him and he would be proud of the pieces because he could see the whole.
And it became a journey. Running went to swimming went to biking went to triathlons. Short ones went to medium ones went to long ones. I found so many of my limits during the process. Most were imaginary, and I figured out how to get around them. Others were real, and I learned to swallow my pride, reframe, and refocus. It stopped being about moving rather early in the process. It was my conduit, my method of transformation. The irony? I'm not terribly good at it. I'm generally last in everything. I've ended more races than I can count after the volunteers have broken down the finish line. I've passed innumerable water stations packed up and done for the day. But it was important for me and I appreciate it.
And then we tried to get pregnant and it didn't work. And much of my time became about finding the right doctor, getting on the right protocol, and timing meds and visits to help us be parents. Infertility turned into IVF turned into a high risk pregnancy. There was no space for me to keep up with my old lifestyle. Technically I could have, but it would have broken me. I have learned how much I have to give and know now to stay inside that boundary. Not for safety, just because I don't want to live on that ledge anymore. I don't have to anymore.
Then I happily focused on Olivia. Perhaps to my own detriment, I turned all eyes on her and her development and happiness. I managed our household. I started a new job. I learned how to become a working mother. It was decidedly without grace, but I kept it all together and came out the other side as a pretty good mom.
And then we were back. Back in the stirrups. Told by the doc not to wait -- IVF immediately. Do not collect $200 or regain your emotional footing. Certainly do not get back to running again. IVF turned into our second miracle baby. And for about a week we were in heaven...amazed to have this good fortune. But then it was low betas. And then an enlarged yolk sac. Weekly discussions of imminent miscarriage. Chart notes that read "grave" and "guarded prognosis."
Funny. At the time, we thought that was the worst it could get.
We made it through all of this -- genetic testing, diagnosis of CHD, preparations for open heart surgery -- because of our marriage. It's a good one. Solid to its core and we both work hard at that.
But...this whole time...I've focused elsewhere. I've known what's good for me, what nurtures me and makes me feel proud and empowered, but I've ignored it. Failed to make the time and priority. Grabbing that "everyone comes before mommy" cliche by the hand and pretending that it looks good on me.
It doesn't. And I'm starting to learn that I don't have to be the cliche if I don't want to.
So, getting into the pool this morning was important. Staring at my alarm at 5 AM and wishing I could just sleep a little more...but not...was about getting back to me. Getting back to the person who was willing to go out on a limb and make promises to herself and keep them. I used to do that all the time. It helped define the edges of my character. It helped me be me without apology.
This morning I kept my promise and it felt good.
Thursday, August 30, 2012
Monday, August 27, 2012
Third CHOP visit
Today was our third visit at CHOP and one that I was eagerly anticipating. Michael didn't join so we could save his vacation days for when we need them more, so I flew solo on this one.
The echo went well -- no change in diagnosis and no surprises. His truncal valve is developing well, which is a huge relief. Looks like he is squarely in the type 1 variety with a healthy truncal valve. Good news. Dr. Deganhart was pleased and so was I. I confirmed that we didn't need to quarantine the house after Little Man gets home (i.e., pull Olivia from daycare), which is a huge relief. She adores daycare and it's the most consistent and sturdy thing for her during these weeks of transition -- the possibility we would need to pull her was not a pretty one. Another bullet dodged.
Next up was meeting with the psychologist. It was the first time I met with her and super helpful to talk through how to manage the emotions surrounding all of this and getting questions to the unknown. I came away with some great suggestions for helping to get the support we need from our family and friends, as well as some coping ideas for the weeks to come. Plus, it's just nice to talk to a mental health professional that actually gets what this all feels like!
Next up with the ultrasound. It was quick and that felt good. (It's the longer ones that worry me most!) Little Man is growing well, measuring in at 55% and 2 pounds 13 ounces. The placenta (and it's whacky umbilical cord) is very high up in the uterus, blessedly far away from the cervix and all the trouble that could cause. Another piece of good news!
Right after the ultrasound was done, the OB (Dr. Martinez) and a visiting fellow came in for the consult. Thanks to an amazing midwife who lives out near us and her input, the team decided that I do not need to move closer to the city after all. Wahoo!! Of course, this could always change, but for now I'm safe to stay at home and continue to work all the way up to delivery. He's going to monitor my sugars, too, and check my insulin doses each week for the duration.
Lastly, the awesome midwife, Karen, and I worked for about an hour to get all my info into the computer and most of the visits planned. Oh....AND A DELIVERY DATE!!!! Looks like we do 2 week visits for the next month, then weekly for the last 6 weeks. It's a lot of time at the hospital, but will be worth it in the end, of course. Goal now is to get to 11/12/12...our newly scheduled due date!
I'm exhausted. That's enough update for now.
The echo went well -- no change in diagnosis and no surprises. His truncal valve is developing well, which is a huge relief. Looks like he is squarely in the type 1 variety with a healthy truncal valve. Good news. Dr. Deganhart was pleased and so was I. I confirmed that we didn't need to quarantine the house after Little Man gets home (i.e., pull Olivia from daycare), which is a huge relief. She adores daycare and it's the most consistent and sturdy thing for her during these weeks of transition -- the possibility we would need to pull her was not a pretty one. Another bullet dodged.
Next up was meeting with the psychologist. It was the first time I met with her and super helpful to talk through how to manage the emotions surrounding all of this and getting questions to the unknown. I came away with some great suggestions for helping to get the support we need from our family and friends, as well as some coping ideas for the weeks to come. Plus, it's just nice to talk to a mental health professional that actually gets what this all feels like!
Next up with the ultrasound. It was quick and that felt good. (It's the longer ones that worry me most!) Little Man is growing well, measuring in at 55% and 2 pounds 13 ounces. The placenta (and it's whacky umbilical cord) is very high up in the uterus, blessedly far away from the cervix and all the trouble that could cause. Another piece of good news!
Right after the ultrasound was done, the OB (Dr. Martinez) and a visiting fellow came in for the consult. Thanks to an amazing midwife who lives out near us and her input, the team decided that I do not need to move closer to the city after all. Wahoo!! Of course, this could always change, but for now I'm safe to stay at home and continue to work all the way up to delivery. He's going to monitor my sugars, too, and check my insulin doses each week for the duration.
Lastly, the awesome midwife, Karen, and I worked for about an hour to get all my info into the computer and most of the visits planned. Oh....AND A DELIVERY DATE!!!! Looks like we do 2 week visits for the next month, then weekly for the last 6 weeks. It's a lot of time at the hospital, but will be worth it in the end, of course. Goal now is to get to 11/12/12...our newly scheduled due date!
I'm exhausted. That's enough update for now.
Tuesday, August 21, 2012
Some pool time for Little Obi
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| Perhaps one of my favorite photos of the summer. |
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| For as adventurous as Olivia was in the big pool for the first time, she still held on close to Mommy. |
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| Love her. |
Something for me...
Tonight I'm doing something for me. This is a big move on my part. Aside from a pedicure here and there and an occasional solo trip to the grocery store, I don't do much for just me. It's a bad combination of "total cheapskate" and "control freak who must be productive at all times."
I muscle through stuff usually and it's notalways ever pretty. It's also no fun for the hubby or strangers who come within 5 feet.
So, today I'm getting my old gym membership back. I used to be a fitness nut. Long-distance triathlons and some such. Lots of miles logged on my bike and hours in the pool or on the road. Fertility treatment always seems to bring this to a screeching halt and for both pregnancies I have struggled to get back onto track. Once Olivia was my #1 priority, fitness just became an aspirational run here and there. Sad to my inner voice wondering where I got lost in the transaction, but a trade off I made with my eyes wide open.
But the problem is that I feel really, really lousy all the time right now. My feet hurt constantly. My calves are knotted up. My pubis and my back holler at me throughout the day. I rarely sleep well. And I'm soft. Not just prego soft, but out-of-shape-prego soft. Why? I don't move enough. I can do more.
I resisted a lot to the idea because of the time commitment. Seriously...if I could find an extra 90 minutes each day, wouldn't it be better to just sleep?? But Michael was insistent and I have given in.
Last night I stopped at Modell's for a suit. Attention pregnant ladies: Do NOT attempt to purchase a non-maternity suit when 7-months pregnant and wildly out of shape. It is comical and frightening, all rolled into one ball of overstretched lycra straps and paunch. Gross.
For now, I'm stuck with my flowery and super inappropriate beach suit, but it fits and is technically a bathing suit. I get to pair this flowery number with a racing cap and goggles, cause that's how I roll. Tonight that will be me...the beached whale in a flower skirted suit and a triathlon cap eaking out slow 50s in the lap pool. Tickets start at $1.
I muscle through stuff usually and it's not
So, today I'm getting my old gym membership back. I used to be a fitness nut. Long-distance triathlons and some such. Lots of miles logged on my bike and hours in the pool or on the road. Fertility treatment always seems to bring this to a screeching halt and for both pregnancies I have struggled to get back onto track. Once Olivia was my #1 priority, fitness just became an aspirational run here and there. Sad to my inner voice wondering where I got lost in the transaction, but a trade off I made with my eyes wide open.
But the problem is that I feel really, really lousy all the time right now. My feet hurt constantly. My calves are knotted up. My pubis and my back holler at me throughout the day. I rarely sleep well. And I'm soft. Not just prego soft, but out-of-shape-prego soft. Why? I don't move enough. I can do more.
I resisted a lot to the idea because of the time commitment. Seriously...if I could find an extra 90 minutes each day, wouldn't it be better to just sleep?? But Michael was insistent and I have given in.
Last night I stopped at Modell's for a suit. Attention pregnant ladies: Do NOT attempt to purchase a non-maternity suit when 7-months pregnant and wildly out of shape. It is comical and frightening, all rolled into one ball of overstretched lycra straps and paunch. Gross.
For now, I'm stuck with my flowery and super inappropriate beach suit, but it fits and is technically a bathing suit. I get to pair this flowery number with a racing cap and goggles, cause that's how I roll. Tonight that will be me...the beached whale in a flower skirted suit and a triathlon cap eaking out slow 50s in the lap pool. Tickets start at $1.
Sunday, August 19, 2012
Ease, or lackthereof
I'm not sure there's ever a time when you can relax with a pregnancy like this. I keep thinking that if I can get another thing done on the list to prepare for the baby, then I'll start feeling better...less anxious.
It's not working.
Don't get me wrong, it feels good to be done with the big girl room and see Olivia adjust so wonderfully to it. Michael finished the walls and carpet cleaning in the nursery today and it's great to know that we're in the home stretch to have our place ready to be a family of four.
But the unease still follows me. Usually just under the surface. It deadens the impact of things, leaving a dull thud when a bright report would usually ring.
Part of my worry is what this third echo will find. I'm not yet feeling comfortable that we've learned about it all. Perhaps I spend too much time reading the experiences of others, whose babies' heart conditions are compounded by a menu of complex related issues. I haven't relaxed in this pregnancy since our first lousy lab finding, about 7 months ago. It's been a long year for us. A really long year for me.
I have to be patient and get through one more week until we go to CHOP for our third consult, our first with the OB team there, who is now taking care of me full time. In the mean time, we've made some great progress at the house getting things ready and the to do list is shrinking. My anxiety may not be, but at least the list is!
I'm also tossing around the idea of a gym membership for me. Spent some time swimming this weekend at MomMom's pool and it felt so wonderful. Truly amazing. I want to find some time to do it between now and the delivery, and hopefully after things settle and Little Man is home again. It's a tough call, since I'm not big on wasting money and it's hard to find any free time for myself except very early in the morning. To get a swim in before work, I'd need to leave the house around 4:30. That early start, a full day of work, and then our typical nights with Olivia? It's a long day, but it might just be worth it.
It's not working.
Don't get me wrong, it feels good to be done with the big girl room and see Olivia adjust so wonderfully to it. Michael finished the walls and carpet cleaning in the nursery today and it's great to know that we're in the home stretch to have our place ready to be a family of four.
But the unease still follows me. Usually just under the surface. It deadens the impact of things, leaving a dull thud when a bright report would usually ring.
Part of my worry is what this third echo will find. I'm not yet feeling comfortable that we've learned about it all. Perhaps I spend too much time reading the experiences of others, whose babies' heart conditions are compounded by a menu of complex related issues. I haven't relaxed in this pregnancy since our first lousy lab finding, about 7 months ago. It's been a long year for us. A really long year for me.
I have to be patient and get through one more week until we go to CHOP for our third consult, our first with the OB team there, who is now taking care of me full time. In the mean time, we've made some great progress at the house getting things ready and the to do list is shrinking. My anxiety may not be, but at least the list is!
I'm also tossing around the idea of a gym membership for me. Spent some time swimming this weekend at MomMom's pool and it felt so wonderful. Truly amazing. I want to find some time to do it between now and the delivery, and hopefully after things settle and Little Man is home again. It's a tough call, since I'm not big on wasting money and it's hard to find any free time for myself except very early in the morning. To get a swim in before work, I'd need to leave the house around 4:30. That early start, a full day of work, and then our typical nights with Olivia? It's a long day, but it might just be worth it.
Friday, August 17, 2012
A whirlwind week
This is not a week I would love to experience again. Let me explain.
This week, my house of cards fell apart in a flourish. After innumerable calls back and forth between three perinatology offices, my local OB, and CHOP, we finally figured out that nobody but CHOP really wants to deal with my issues. The perinatology group that has treated me up to now, monitoring sugars twice a week and doing all our genetic testing, feels we cannot continue there. The big concern is that once non-stress tests begin, they would have to admit me to a hospital not equipped with a high enough level nicu should I show signs of labor or a problem. I get it...I really do. Do I wish we could have resolved this months ago and not waste hours of time? Sure.
The second choice perinatology group is my local hospital. While they have an appropriate nicu (and would, gasp, be convenient!), they also were inappropriate since they refused to track my sugars/insulin dosing. They would only perform the non-stress tests and wanted to get yet another doctor (endo) involved for the other piece. Never mind.
Meanwhile, folks at CHOP weren't talking to each other and confusing the whole thing by transferring my care over from all of my current providers without my knowledge. Turns out it was by mistake (I think they saw transfer at 37 weeks and mistakenly thought we were already at 37, but we're only at 27 weeks). But, after debate, they decided they really did want me full time now.
It was exhausting. Monday alone had 8 separate phone calls related to this, all during the work day. It's enough to have this CHD issue, but to also have full blown diabetes and a potentially dangerous cord insertion...it's just overwhelming. Every conversation with a healthcare practitioner is complex. They're ready to shotgun an answer about what to do after the first part of the explaination...and then I have to slow them down and say, "yes, and there's also this and this and this going on." As my local OB said...I hit the trifecta of complex pregnancies. Joy!
Admittedly, I got depressed and angry for a day. Pissed off and frustrated. You pick the adjective. But, I've calmed down and realized (after talking to my Dad) that this is a blessing in disguise and now all my care will be seamlessly coordinated at CHOP.
Why did I fight this initially? CHOP is about an hour drive from my office, or 1 1/2 hour drive from home. Considering we're about to begin 2xweek testing, that becomes mighty burdensome on my work schedule. And honestly, I don't have any other energy to offer work in exchange. When I was pregnant with Olivia and had tons of testing for diabetes, I simply worked late on the days I was out of the office. I just can't do that now. First of all...it's more time away. I could easily miss 2-3 hours for each non-stress test day. There's no way I can tack that onto the end of the night twice a week and not exhaust myself. Rock...meet hard place.
Regardless, it's decided. All CHOP, all the time. After this was set in stone, I spent two days out of town traveling for work meetings. I usually really enjoy these trips -- they suit me. But this time was more difficult physically because of the pregnancy and I found it was super difficult to manage my diabetes care. (What I do on the road is meet with donors, which always involves some sort of dining. It's never really possible to excuse myself right before we eat to go into the bathroom for an insulin shot!) But, I'm back now, unpacked and happy to be home. Probably one more trip before the baby arrives, but I'll worry about that in September.
So, needless to say, this has been a complex week. I'm tired and feeling a tad dulled from the whole experience. The weekend is almost here, but already full of tasks and obligations (inlaws and volunteering), so I'm not sure how much rest will really happen. I keep thinking that I have to slow this all down, but it seems so very hard to do with a house to run, a baby to prepare for, and a family to see. Maybe I need to practice saying "no" more often to folks. Never been a strength.
This week, my house of cards fell apart in a flourish. After innumerable calls back and forth between three perinatology offices, my local OB, and CHOP, we finally figured out that nobody but CHOP really wants to deal with my issues. The perinatology group that has treated me up to now, monitoring sugars twice a week and doing all our genetic testing, feels we cannot continue there. The big concern is that once non-stress tests begin, they would have to admit me to a hospital not equipped with a high enough level nicu should I show signs of labor or a problem. I get it...I really do. Do I wish we could have resolved this months ago and not waste hours of time? Sure.
The second choice perinatology group is my local hospital. While they have an appropriate nicu (and would, gasp, be convenient!), they also were inappropriate since they refused to track my sugars/insulin dosing. They would only perform the non-stress tests and wanted to get yet another doctor (endo) involved for the other piece. Never mind.
Meanwhile, folks at CHOP weren't talking to each other and confusing the whole thing by transferring my care over from all of my current providers without my knowledge. Turns out it was by mistake (I think they saw transfer at 37 weeks and mistakenly thought we were already at 37, but we're only at 27 weeks). But, after debate, they decided they really did want me full time now.
It was exhausting. Monday alone had 8 separate phone calls related to this, all during the work day. It's enough to have this CHD issue, but to also have full blown diabetes and a potentially dangerous cord insertion...it's just overwhelming. Every conversation with a healthcare practitioner is complex. They're ready to shotgun an answer about what to do after the first part of the explaination...and then I have to slow them down and say, "yes, and there's also this and this and this going on." As my local OB said...I hit the trifecta of complex pregnancies. Joy!
Admittedly, I got depressed and angry for a day. Pissed off and frustrated. You pick the adjective. But, I've calmed down and realized (after talking to my Dad) that this is a blessing in disguise and now all my care will be seamlessly coordinated at CHOP.
Why did I fight this initially? CHOP is about an hour drive from my office, or 1 1/2 hour drive from home. Considering we're about to begin 2xweek testing, that becomes mighty burdensome on my work schedule. And honestly, I don't have any other energy to offer work in exchange. When I was pregnant with Olivia and had tons of testing for diabetes, I simply worked late on the days I was out of the office. I just can't do that now. First of all...it's more time away. I could easily miss 2-3 hours for each non-stress test day. There's no way I can tack that onto the end of the night twice a week and not exhaust myself. Rock...meet hard place.
Regardless, it's decided. All CHOP, all the time. After this was set in stone, I spent two days out of town traveling for work meetings. I usually really enjoy these trips -- they suit me. But this time was more difficult physically because of the pregnancy and I found it was super difficult to manage my diabetes care. (What I do on the road is meet with donors, which always involves some sort of dining. It's never really possible to excuse myself right before we eat to go into the bathroom for an insulin shot!) But, I'm back now, unpacked and happy to be home. Probably one more trip before the baby arrives, but I'll worry about that in September.
So, needless to say, this has been a complex week. I'm tired and feeling a tad dulled from the whole experience. The weekend is almost here, but already full of tasks and obligations (inlaws and volunteering), so I'm not sure how much rest will really happen. I keep thinking that I have to slow this all down, but it seems so very hard to do with a house to run, a baby to prepare for, and a family to see. Maybe I need to practice saying "no" more often to folks. Never been a strength.
Thursday, August 9, 2012
Let's pretend that never happened
Food poisoning? A 24-hour stomach bug?
Whatever it was, it was definitely the most miserable 24 hours of my recent history. Horrid only begins to describe the experience of vomiting, nausea, and whole body aches that were my yesterday. Every time the sea would stop rocking my internal ship, Little Man would flip or kick and start it all over again. So sick for the whole day that I couldn't even call my doctor. Ate a handful of cheerios and a cup of water and generally moaned all day.
Thankfully, today is better. Upright and back at work, although very shaky still. Stomach and back hurt like crazy, but nothing like yesterday. This pregnancy is sure running me ragged!! Only 91 days to go...
Whatever it was, it was definitely the most miserable 24 hours of my recent history. Horrid only begins to describe the experience of vomiting, nausea, and whole body aches that were my yesterday. Every time the sea would stop rocking my internal ship, Little Man would flip or kick and start it all over again. So sick for the whole day that I couldn't even call my doctor. Ate a handful of cheerios and a cup of water and generally moaned all day.
Thankfully, today is better. Upright and back at work, although very shaky still. Stomach and back hurt like crazy, but nothing like yesterday. This pregnancy is sure running me ragged!! Only 91 days to go...
Tuesday, August 7, 2012
Putting my personal crazy to work
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.
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.
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!
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