It's been a quiet summer. I am limited in what I can do and being this far along with number 2 has kept me mostly in New England. I not comfortable with making the 6+ hour drive to NJ, nor do I want to risk being that far away from our team. We flew down one last time this past weekend so that we got some time down there. So other than the beginning of the summer and this past weekend, trips to the beach have been limited to day trips to either Walden Pond or Salisbury beach. Mostly, its been a summer of staying indoors as its been too hot for me or Hope to be outside, other than early in the morning. The last couple of weeks or so have been a bit better and we've ventured out more.
The mission I set out on at the beginning of the summer was to make memories with Hope. She won't remember this last summer of being our only child, but I want to be sure that I do. In just 3 weeks, she will no longer be the baby. In fact, these days, she's anything but a baby. She is blossoming into this amazing little person. She has definite likes and dislikes and will tell you about them. Mostly, she is happy and funny. She is fiercely independent, but at the same time cautious and afraid to take risks. She won't do anything until she is sure she has mastered the task. Her language skills are exploding. It seems like she is learning half a dozen new words a day and she is starting to string words together. If she doesn't know the word for something, she will often ask, studying your face to make sure to get it down. Her pronunciation isn't always right - she says "I love lu" instead of "I love you" for example and there's many other things that only we understand from spending time around her, but it's getting better by the day and I expect by the time her sister comes home from the hospital she will be talking in sentences. Shes loves to jump and dance and sing and is your typical toddler. Life is good.
Here are some highlights in pictures of the things Hope and I have done this summer:
 |
| First and only road trip to NJ. Lunch at Georgies! |
 |
| Future lifeguard |
 |
| Beach baby |
 |
| Hanging out with her friend Matias |
 |
| Playing in the Sand |
 |
| First Kohr brother's custard to herself |
 |
| A little obsessed with her Muckies (Wubbanubs) |
 |
| 4th of July in Marblehead |
 |
| Second trip to the shore. Mama, Hope, and baby sister |
 |
| Gotta Have Wawa |
 |
| Swinging with Dada |
 |
| Beach time with her friend Grace |
 |
| Giving baby sister some love |
 |
| Wheeeeee! The swings are her favorite. |
 |
| Escaping the heat at the mall. Yummy! |
 |
| Looking at the boats in Rockport harbor with Dada |
 |
| Walden Pond |
 |
| Playing with the buckles on her stroller |
 |
| Ogunquit |
 |
| Ogunquit |
 |
| Celebrating Mama's birthday at Salisbury Beach |
 |
| Rainy morning selfies |
 |
| More Walden |
 |
| Lunch in the Prouty Garden at Boston Children's after Mama's appointment at Beth Israel. |
 |
| Checking out the big cats at the Stone Zoo |
 |
| Monkies!!! |
 |
| Another week, another trip to Salisbury |
 |
| Hope with her pediatrician, Dr McKeen |
 |
| Last trip to the shore, and a rare nap on Mama |
 |
| Playing with her Spanish cousin Carmen |
 |
| Looking out the window on the way home |
 |
| Family selfie on the plane |
I often say how easy it has become to forget how sick she was when she was born. Once in a while, I will catch a glimpse of her very faded zipper scar. It jolts me back, but I also often look at it in complete wonder, "how is it possible that we have come so far in such a short time?" I think back to the crippling fear I felt two years ago and wonder what I was afraid of. Other than being a little small and a month or two behind in some of her milestones, there is no indication other than this faded scar of the fierce battle she fought so early on. She is the picture of health - glowing skin, bronzed from the sun, shiny blond hair, sparkling eyes, etc. She is almost never sick, especially since she's not at daycare right now. She continues to be the easiest kid you've ever met, even at her most difficult. When she does get upset, she's usually pretty easily calmed. She is a rock star at restaurants and pretty much anywhere in public. We've had a few temper tantrums, but they are becoming fewer with her ability to communicate. She goes to bed when she's tired, though she is fighting it more these days, and mostly eats what she is fed. We've got it good, and while I hated seeing what she went through early on, I can't help but think we paid heavily up front. I'm hoping the same will ring true for her little sister and that she's not the holy terror I fear is coming our way.
Number 2 is doing well. She's growing appropriately and all looks good. Mostly, I feel great despite a rough first 25 weeks. (Hello, working full time while chasing a toddler pregnant) Since summer started, my energy has returned and I feel pretty good most of the time. My two pregnancies have been complete opposites - With Hope, I felt mostly good for the first 25 weeks. I had crippling exhaustion in the first trimester, but other than that, I felt pretty good. Sometime around 26-27 weeks things started to turn - we went on vacation to Europe for my host brother Fabian's wedding in Belgium and with the travel and walking, my feet swelled up like balloons. They never really returned to normal. I also experienced carpal tunnel syndrome, to the point where when I woke up in the morning, my hands would be frozen shut. In the last 10 weeks of my pregnancy with Hope, my blood pressure crept up and up and I started to have this dull, constant headache that came on so subtly, I didn't even know it was there. This time around, I didn't feel well at all for the first 25 weeks. My first trimester was spent not liking food, especially vegetables. Everything I looked at except very plain carbs made me nauseous. This is especially hard when you are gluten intolerant. I couldn't even think of vegetables, especially broccoli. I ate a lot of buttered noodles. Things got better after the first trimester, but I still couldn't touch broccoli until 18 or 20 weeks in. I suffered from a lot of migraines during the second trimester - the kind where I had to retreat to a dark room and not come out for the rest of the day. I was tired almost all of the time. However, sometime around the beginning of June, I started to feel better and started to have more energy - ironic, as this was near when I entered the third trimester. Now, at 36 weeks, I feel amazingly good. I'm still very active - exercising at 4-5 times a week. I've learned that no matter how tired I am, exercising makes me feel better for the rest of the day. Typically, I run 3-4 days a week and swim 2. On off days, I try to get in a good long walk.
Most of my exercising has been happening early in the morning, before Hope gets up and before it gets too hot. On cooler days, we take an afternoon walk in addition to whatever I did in the AM. I have almost no swelling. I've only recently taken my rings off, mostly because I don't want to risk my fingers swelling and not being able to get them off. My feet have only swollen once or twice and it was after spending a fair amount of time on them or because of the heat. My blood pressure has remained low for the most part, though it was a little elevated at my appointment two weeks ago - I suspect more due to white coat syndrome than being actually health related. More on that in a little bit.
I do notice that as the weeks pass, I am getting slightly more tired, though not tremendously so. Some of that is that I'm having trouble sleeping at night. Some is just the toll that growing a baby takes. Number 2 is getting big and cramped in there. She is taking a lot of my energy to grow and move and learn how to be a human on the outside. I've learned to nap when Hope naps, even if it is only 20 minutes. I probably take a nap 4-5 days a week. Being due at the beginning of the school year is a real luxury. Just when pregnancy is the hardest on my body, I don't have to work. I am nervous about making it to the first day of school! The current plan is to work the first week of school and maybe a couple days after that. This will allow me to get my room ready and help transition my students to the person they hired to teach for me. I will be 38 weeks on the first day. My OB is talking about induction sometime in the 39th week, unless of course I were to go into labor on my own, which would be my preference as it would be easier on my body and easier on the baby. That, and I'd like to experience non-induced labor.
Two weeks ago, I transferred my care from my beloved Mt Auburn midwife over to the big guns at Beth Israel. It was an eerie deja vu to walk back into that hospital and into the Maternal Fetal Medicine Clinic. Many of the people I met with cared for me while I was pregnant with Hope. I started the appointment with a growth scan ultrasound, just to see how baby was growing and make sure there was no indication of fluid build up anywhere (this isn't something we'd expect to see with her condition). The tech surprised me by switching to a 3D image. We got a good view of her face! I feel like I have been in denial for most of this pregnancy, but somehow, seeing that image made things a little more real. I instantly teared up.
After the ultrasound was complete, the doctor who did all my ultrasounds over at Mt Auburn came in to talk to me (She's actually a BI doctor, but because Mt Auburn doesn't have a maternal fetal department, she is at Mt Auburn on Fridays). She was happy with how things looked. Then I had a quick exam with Mary, the nurse who cared for me throughout the last weeks of Hope's pregnancy. Knowing our story, she was so happy to see me back, even if it was for the reason I was back there. Finally, I met with Dr Scott Shainker, the OB who took care of me at my last two appointments with Hope. Ultimately, he was the one who made the call to induce me due to preeclampsia. He also came to check in on me multiple times while I was still in the hospital. The only person I didn't get to see was Dr Steven Ralston, who was my main OB with Hope and Dr Achilles, who delivered Hope. Dr Achilles is no longer at BI, but I am sure I will see Dr Ralston at some point. Because it was a work day and Hope is home with me, she had to go to this marathon appointment with me. She was a rock star, as always, and they were all thrilled to finally meet her. No one ever got to see her at BI because she was transferred so quickly and then in all of my follow-up care - I continued weekly visits due to my high blood pressure - she was still at Children's. The transferring of my care stirred up a lot of emotions. I really wanted to deliver this baby in the comfort of a smaller, more nurturing hospital under the care of a midwife, however, I am so grateful to have the resources we have in Boston and to have the ability to transfer my care to a world class hospital like BI (ranked #4 in Boston overall). It was nice to walk into a large practice like that and know many of the players, however it also stirred up a lot of stress from my previous experience, which is what I attribute the rise in blood pressure to (I've been checking it at home and its been pretty normal). I will now see them once a week until delivery, getting an ultrasound each time. This week, I had a NICU consult, so that the NICU is aware of what is coming their way and to go over the plan of action. They have started to plan for her arrival, and like Hope, we will have a whole NICU team in the room when she makes her appearance. When I start to push, they will be notified and they will notify the CICU at Boston Children's, who will start to prepare space for her. When I start to make my final pushes, they will be called in to the room to help welcome her into the world. She will be checked out by them and they will make sure she is stable. I was hoping to get a little more time with her than I got with Hope, though after today's consult, it doesn't sound like that will happen. Like Hope, she will need medicine right away to keep her ductus open and allow for blood flow through her heart. Once it is clear she is stable, the ambulance will be called and she will be transferred to Children's, as long as they have space for her. If there is no space in the CICU at Children's, she will stay in the NICU at BI or will be transferred to the NICU at Children's, whatever cardiology decides. If her heart is not as predicted and is more severe, they will definitely transfer her to Children's. As the NICU doctor told me today - they don't do heart stuff, so if anything is off, they will want her out of there. Chris will accompany her wherever she goes.
The current plan for delivery depends on who you talk to. The clearest answer I got is that if I am induced, it will not be on a weekend, so sometime in the week after I turn 39 weeks (the week Labor Day falls on). The nurse seems to hope I will go into labor myself, the OB who did my ultrasounds at Mt Auburn would like me to be induced to help prevent the baby from being born at night or on a weekend, cardiology doesn't seem to care, NICU doesnt seem to care as long as it is before 40 weeks, and my main OB didn't really say. Of course, this is all contingent upon whether or not I remain healthy, which looks to be the case at the moment. If I don't go into labor, I am pushing to be induced on Thursday the 8th, which I think is the latest they'll let me go. I'd like for them to induce me in the evening, so that hopefully I can sleep through the night and wake up rested and in labor, with the baby arriving sometime on Friday morning / afternoon. Of course, I know her arrival time is out of my control, but if I had to pick, this is the scenario I'd pick.
Many people have asked me recently what the update on her condition is. The answer is that there seem to be two scenarios. As of my second echo, Cardiology seemed to think it was the same as Hope - Tetralogy of Fallot with Pulmonary Atresia (TOF / PA). As of my most recent echo on July 21st, he seemed to think it might be Truncus Arteriosus. We have been able to locate the pulmonary arteries, but are unable to determine where the blood flow is coming from, which would be the indicator to the final diagnosis. It doesn't really matter much - both will require open heart surgery within the first week. Both have a similarly good prognosis.
So for now, we're just checking off the boxes and waiting for her arrival. Most of the boxes are checked and it's really getting real. I've washed the newborn clothes and put them in an empty drawer in Hope's room. We got a new car seat since Hope's was a hand me down and expires in September. I was so happy to score a used one (same model) for $25 from a friend. I've packed the baby's hospital bag and started to pack mine, making a list of things that are not yet in the bag. I've turned in my FMLA paperwork at work. I've ordered a new pump. I've sterilized bottles / pacifiers / pump parts. We're still waiting on the new furniture to arrive. Hope will be moving to the bigger room, and since the furniture will be getting delivered, she'll also be getting all the new stuff. We still ordered her a crib - she has never tried to climb out and I'm all for keeping her contained as long as I can. When she's ready to transition, we will go right to full-size bed because I decided not to buy the toddler conversion kit. Because she seems to like the beach so much, her new room will be a beachy theme. The room is more than double the size of her current room, so she will have lots of room to play! I also still need to install the car seat base, We still need to pick a name. We do have a couple of contenders, but no finalists. We haven't found a name either of us are 100% sold on the way we felt about Hope. It will not be Faith, Grace, or Charity - we don't want our girls who will be so close in age to have to deal with that, especially as teens. But at the same time, we want something meaningful so that number 2 doesn't feel slighted on the name front. Other than these few things, there is not much left to do. It's getting close! But yet, at the same time, I don't feel like I am 36+ weeks pregnant and about to have my second child in just 3 weeks.
Since I learned I was pregnant, I have felt pretty terrified about this whole thing. Growing up an only child, I know nothing about siblings. I worry my girls will overwhelm me, I worry they won't get along, I worry I won't be able to handle two at the same time. A friend recently pointed out something that did help me feel a little less nervous - I am a teacher. I wrangle 30 kids at a time on a daily basis, so hopefully that skill set transfers over. Ironically, I am not terrified over the heart diagnosis. Knowing what to expect makes it so much easier. I know our team knows how to handle cases like ours and will do a good job. We are in the best hands possible at Boston Children's. What does terrify me about the heart diagnosis is the hospital time. Some things I have no idea what to expect. For example - how will Hope react? I want to keep her life as normal as possible so she will therefore stay in daycare until after her sister comes home. This will force me to leave and spend time with her each day. How will we manage day to day living in the hospital? In this case, knowing what to expect is the most daunting to me. This may have been what I struggled with the most last time. Being postpartum and not having your baby with you 24 /7 is awful. Its only made worse by having a baby in the Cardiac ICU where she is only allowed two visitors at a time. It is so beyond hard to have an incredible hormone imbalance from just having a baby AND having to take turns to see / hold your own baby, who should be permanently attached to you. Sometimes, you aren't even allowed to hold the baby and then you're just sitting there staring at the baby. Then there's the step-down unit. Visitors are allowed and not limited there (within reason), but the rooms are cramped and there's only so much visitor time you can take when your baby is in the hospital. This whole process is exhausting and sitting around with visitors is great for a little bit, but not all day. Don't get me wrong - we want people to come visit - we loved having people visit last time and not many people other than family did. So please come visit once we're out of CICU, we just don't want guests to stay for more than an hour or two. Its too overwhelming. I'm hoping knowing what to expect will help us manage our time in the hospital better and it won't be quite as difficult on us.
What we absolutely know about is the other side. And its glorious. Seeing Hope shine each day will be a reminder of the pot at the end of the rainbow. This is where I'm trying to keep my focus for the next few weeks.
I do notice that as the weeks pass, I am getting slightly more tired, though not tremendously so. Some of that is that I'm having trouble sleeping at night. Some is just the toll that growing a baby takes. Number 2 is getting big and cramped in there. She is taking a lot of my energy to grow and move and learn how to be a human on the outside. I've learned to nap when Hope naps, even if it is only 20 minutes. I probably take a nap 4-5 days a week. Being due at the beginning of the school year is a real luxury. Just when pregnancy is the hardest on my body, I don't have to work. I am nervous about making it to the first day of school! The current plan is to work the first week of school and maybe a couple days after that. This will allow me to get my room ready and help transition my students to the person they hired to teach for me. I will be 38 weeks on the first day. My OB is talking about induction sometime in the 39th week, unless of course I were to go into labor on my own, which would be my preference as it would be easier on my body and easier on the baby. That, and I'd like to experience non-induced labor.
Two weeks ago, I transferred my care from my beloved Mt Auburn midwife over to the big guns at Beth Israel. It was an eerie deja vu to walk back into that hospital and into the Maternal Fetal Medicine Clinic. Many of the people I met with cared for me while I was pregnant with Hope. I started the appointment with a growth scan ultrasound, just to see how baby was growing and make sure there was no indication of fluid build up anywhere (this isn't something we'd expect to see with her condition). The tech surprised me by switching to a 3D image. We got a good view of her face! I feel like I have been in denial for most of this pregnancy, but somehow, seeing that image made things a little more real. I instantly teared up.
After the ultrasound was complete, the doctor who did all my ultrasounds over at Mt Auburn came in to talk to me (She's actually a BI doctor, but because Mt Auburn doesn't have a maternal fetal department, she is at Mt Auburn on Fridays). She was happy with how things looked. Then I had a quick exam with Mary, the nurse who cared for me throughout the last weeks of Hope's pregnancy. Knowing our story, she was so happy to see me back, even if it was for the reason I was back there. Finally, I met with Dr Scott Shainker, the OB who took care of me at my last two appointments with Hope. Ultimately, he was the one who made the call to induce me due to preeclampsia. He also came to check in on me multiple times while I was still in the hospital. The only person I didn't get to see was Dr Steven Ralston, who was my main OB with Hope and Dr Achilles, who delivered Hope. Dr Achilles is no longer at BI, but I am sure I will see Dr Ralston at some point. Because it was a work day and Hope is home with me, she had to go to this marathon appointment with me. She was a rock star, as always, and they were all thrilled to finally meet her. No one ever got to see her at BI because she was transferred so quickly and then in all of my follow-up care - I continued weekly visits due to my high blood pressure - she was still at Children's. The transferring of my care stirred up a lot of emotions. I really wanted to deliver this baby in the comfort of a smaller, more nurturing hospital under the care of a midwife, however, I am so grateful to have the resources we have in Boston and to have the ability to transfer my care to a world class hospital like BI (ranked #4 in Boston overall). It was nice to walk into a large practice like that and know many of the players, however it also stirred up a lot of stress from my previous experience, which is what I attribute the rise in blood pressure to (I've been checking it at home and its been pretty normal). I will now see them once a week until delivery, getting an ultrasound each time. This week, I had a NICU consult, so that the NICU is aware of what is coming their way and to go over the plan of action. They have started to plan for her arrival, and like Hope, we will have a whole NICU team in the room when she makes her appearance. When I start to push, they will be notified and they will notify the CICU at Boston Children's, who will start to prepare space for her. When I start to make my final pushes, they will be called in to the room to help welcome her into the world. She will be checked out by them and they will make sure she is stable. I was hoping to get a little more time with her than I got with Hope, though after today's consult, it doesn't sound like that will happen. Like Hope, she will need medicine right away to keep her ductus open and allow for blood flow through her heart. Once it is clear she is stable, the ambulance will be called and she will be transferred to Children's, as long as they have space for her. If there is no space in the CICU at Children's, she will stay in the NICU at BI or will be transferred to the NICU at Children's, whatever cardiology decides. If her heart is not as predicted and is more severe, they will definitely transfer her to Children's. As the NICU doctor told me today - they don't do heart stuff, so if anything is off, they will want her out of there. Chris will accompany her wherever she goes.
The current plan for delivery depends on who you talk to. The clearest answer I got is that if I am induced, it will not be on a weekend, so sometime in the week after I turn 39 weeks (the week Labor Day falls on). The nurse seems to hope I will go into labor myself, the OB who did my ultrasounds at Mt Auburn would like me to be induced to help prevent the baby from being born at night or on a weekend, cardiology doesn't seem to care, NICU doesnt seem to care as long as it is before 40 weeks, and my main OB didn't really say. Of course, this is all contingent upon whether or not I remain healthy, which looks to be the case at the moment. If I don't go into labor, I am pushing to be induced on Thursday the 8th, which I think is the latest they'll let me go. I'd like for them to induce me in the evening, so that hopefully I can sleep through the night and wake up rested and in labor, with the baby arriving sometime on Friday morning / afternoon. Of course, I know her arrival time is out of my control, but if I had to pick, this is the scenario I'd pick.
Many people have asked me recently what the update on her condition is. The answer is that there seem to be two scenarios. As of my second echo, Cardiology seemed to think it was the same as Hope - Tetralogy of Fallot with Pulmonary Atresia (TOF / PA). As of my most recent echo on July 21st, he seemed to think it might be Truncus Arteriosus. We have been able to locate the pulmonary arteries, but are unable to determine where the blood flow is coming from, which would be the indicator to the final diagnosis. It doesn't really matter much - both will require open heart surgery within the first week. Both have a similarly good prognosis.
So for now, we're just checking off the boxes and waiting for her arrival. Most of the boxes are checked and it's really getting real. I've washed the newborn clothes and put them in an empty drawer in Hope's room. We got a new car seat since Hope's was a hand me down and expires in September. I was so happy to score a used one (same model) for $25 from a friend. I've packed the baby's hospital bag and started to pack mine, making a list of things that are not yet in the bag. I've turned in my FMLA paperwork at work. I've ordered a new pump. I've sterilized bottles / pacifiers / pump parts. We're still waiting on the new furniture to arrive. Hope will be moving to the bigger room, and since the furniture will be getting delivered, she'll also be getting all the new stuff. We still ordered her a crib - she has never tried to climb out and I'm all for keeping her contained as long as I can. When she's ready to transition, we will go right to full-size bed because I decided not to buy the toddler conversion kit. Because she seems to like the beach so much, her new room will be a beachy theme. The room is more than double the size of her current room, so she will have lots of room to play! I also still need to install the car seat base, We still need to pick a name. We do have a couple of contenders, but no finalists. We haven't found a name either of us are 100% sold on the way we felt about Hope. It will not be Faith, Grace, or Charity - we don't want our girls who will be so close in age to have to deal with that, especially as teens. But at the same time, we want something meaningful so that number 2 doesn't feel slighted on the name front. Other than these few things, there is not much left to do. It's getting close! But yet, at the same time, I don't feel like I am 36+ weeks pregnant and about to have my second child in just 3 weeks.
Since I learned I was pregnant, I have felt pretty terrified about this whole thing. Growing up an only child, I know nothing about siblings. I worry my girls will overwhelm me, I worry they won't get along, I worry I won't be able to handle two at the same time. A friend recently pointed out something that did help me feel a little less nervous - I am a teacher. I wrangle 30 kids at a time on a daily basis, so hopefully that skill set transfers over. Ironically, I am not terrified over the heart diagnosis. Knowing what to expect makes it so much easier. I know our team knows how to handle cases like ours and will do a good job. We are in the best hands possible at Boston Children's. What does terrify me about the heart diagnosis is the hospital time. Some things I have no idea what to expect. For example - how will Hope react? I want to keep her life as normal as possible so she will therefore stay in daycare until after her sister comes home. This will force me to leave and spend time with her each day. How will we manage day to day living in the hospital? In this case, knowing what to expect is the most daunting to me. This may have been what I struggled with the most last time. Being postpartum and not having your baby with you 24 /7 is awful. Its only made worse by having a baby in the Cardiac ICU where she is only allowed two visitors at a time. It is so beyond hard to have an incredible hormone imbalance from just having a baby AND having to take turns to see / hold your own baby, who should be permanently attached to you. Sometimes, you aren't even allowed to hold the baby and then you're just sitting there staring at the baby. Then there's the step-down unit. Visitors are allowed and not limited there (within reason), but the rooms are cramped and there's only so much visitor time you can take when your baby is in the hospital. This whole process is exhausting and sitting around with visitors is great for a little bit, but not all day. Don't get me wrong - we want people to come visit - we loved having people visit last time and not many people other than family did. So please come visit once we're out of CICU, we just don't want guests to stay for more than an hour or two. Its too overwhelming. I'm hoping knowing what to expect will help us manage our time in the hospital better and it won't be quite as difficult on us.
What we absolutely know about is the other side. And its glorious. Seeing Hope shine each day will be a reminder of the pot at the end of the rainbow. This is where I'm trying to keep my focus for the next few weeks.
Thank you for sharing I enjoy following your progress and that of hope ..I am sure she will welcome her sister and love her... sending you love hugs and prayers...
ReplyDelete