Yesterday, we had to switch Lil' Bit from her 12-month pajamas to her 18-month pajamas. Incidentally, children's clothes seem to never actually fit. They start out too big but, before you know it, they are are too small, so you move up a size to clothes that are once again too big. So, the 18-month pajamas are a little large--although not as much as I would have expected. When I look at them, they look huge, but once they are on, they don't look baggy. Anyway, in the process of switching her pajamas out, I realized how much she has changed in the last 13-months. She never ceases to amaze me with what she knows and I thought I would share some of that with you. So, without further delay, here is a list of some of the changes we have witnessed in Lil' Bit:
-She has taken her first steps. Although she still prefers to hang on to things, she can take one or two steps before toppling over.
-She is 98% able to crawl backwards down stairs. The remaining 2% is figuring how to turn around at the top of the stairs and not getting confused half-way down and starting back up.
-She can look at a box to figure out if the top is open and, if it is, pop it open to see what is inside. This helps her get her own Cheerios and cookies.
-She can pop lids off and on any puff container.
-She can mostly twist lids off and on her sippy fruit packages.
-She can drink from a straw. She hasn't mastered regular sippy cups, but she loves to use those with straws.
-She working on the whole silverware thing. Yesterday, she took her fork and kept dipping it in the yogurt and then licking it clean. She will also pick up foods off her tray and stick them on the fork before sticking the fork in her mouth to eat it.
-She is great at mimicking. When people laugh around her, she will laugh. One of my favorites is when I took her hand to help her pet the kitty (rather than poke or grab it). After a few strokes, she grabbed my thumb and moved my hand back and forth to help me pet the kitty.
-She loves pulling scrunchies out of my hair and then putting them on her own head--since she has no hair yet to put them on.
-She knows there are things she's not supposed to do and she gets a little twinkle in her eye before she tries to do them, often looking over at us to see whether we notice her about to do something she isn't supposed to.
-She has favorite games she likes to play, particularly those that involve lap bouncing and turning upside down. She will bounce to let you know she wants more, or throw herself backward to let you know she wants to go upside down again.
I can't wait to see what the next 13 months have in store.
[Title changed on 1/16/12 from "Milestones" to "Baby Milestones" after discovering a previous post with same title. oops...]
1.05.2012
1.04.2012
Once More Into the Breach
When we last left our intrepid parents, they were traveling home from family visits with a tired, precocious 13-month-old, trying to recover from a rather eventful trip while discerning whether they were crazy enough to have additional children....
Before we get back to that part of the story, I have to confess that I there is a rather large piece of the equation regarding our decision to have additional children that I haven't shared, but is a driving force behind my feelings of urgency. That is, once we're done having children, I'm having a hysterectomy. My body and I have never really gotten along in this regard. Whether it was ruptured ovarian cysts, extremely severe Mittelschmerz, endometriosis, or excessively long and heavy periods, I have always felt at war with myself. My cycles started when I was 9 and I was on birth control by age 16 to regulate my body and stop the cysts. However, you (generally) can't be on birth control and have kids. So, those years we were trying to have kids, without success, were particularly difficult for me because I was experiencing horrible physical pain in addition to the crushing sensation of failure each month.
Once we got pregnant with Lil' Bit, I had a reprieve that lasted almost 6 months postpartum, but it all came back with a vengeance. There had been a chance that my system would regulate itself and some of the issues would be gone. Sadly, it was not to be and each month I wait for the pain to begin all over again. Every month that we postponed having another child was another month of agony for me. I wasn't ready to say "no," however, because I knew that once we made that decision, it would foreclose the possibility for good. And so I struggled. I wanted to make sure we made the best decision we could for our family, but I desperately wanted to stop the pain which meant either having kids now, or foreclosing the possibility for good.
So, with that additional background, we find ourselves again in the middle of yet another discussion regarding additional children. Only, it went nothing like I expected. Today was our "drop dead" date for a February procedure because I would have to start shots tomorrow. With that in mind, as we were driving home on Monday, I asked Phil whether he would prefer if we just skipped February. In my mind, I was offering him more time to consider our options, the same way I had when I asked if he wanted to postpone the cycle from a January procedure. So, imagine my surprise when the first words out of his mouth were, "I think I'm okay with February." After I recovered from the mental whiplash I suffered upon processing his answer, I said something to the effect of, "Me, too." Although I certainly had not been expecting that answer, I knew it was what I wanted, so I was going to take him at his word and get the ball rolling.
Still, I wondered how had we gotten here? Only days before, we had both been leaning heavily toward not. I can't speak for Phil, but I know what changed for me. Mainly, I discovered that some part of my brain had been miscalculating the equation. In the midst of all the frustrating and stressful parts of parenting, some piece of me got the idea that the difference between 2 kids and 1 was the same as between 1 and 0. It isn't. Once you have the first, stress and frustration are a given. Not having a second child was not going to make my life stress-free. Lil' Bit would still get on my nerves and warm my heart and do all of the things she does now, regardless of whether we had additional children. Once my mind finally accepted that life was going to be stressful no matter which way we went, I was freed up to say "yes."
I also realized that one of the reasons I would like another child is the chance to pay better attention. When Lil' Bit came along, we had no idea what we were doing as parents. Everything was new and I was exhausted and overwhelmed. Now, I fully expect that there will be periods where I am exhausted and overwhelmed if there are additional children in our future. But, I get the chance to pay attention; to watch the baby grow and learn. To love the newborn when all it is is a lump that needs so much love and attention. I have spoken to or read accounts from many families where parents take great joy in the third or fourth child because they know it will be their last and so they savor every moment. I want to do that. I want to savor the moments because, chances are, this will be it. And, I want to watch both Lil' Bit and the possible future children grow into fully-functioning adults. I want to see who they become and watch how that happens. I want to see how they are different and how they are the same. I want to see them interact as siblings. I can honestly say that I want to have additional children for those children.
In addition, I realized that the 1-year follow-up visits for Lil' Bit aren't set in stone. Medicine is flexible. If and when we get pregnant and have a due date, we can alert the doctors and make sure the visits occur either prior to my due date, or get any number of friends to help us out if we have a newborn or two to deal with. Either way, we can manage it. I have every faith in my ability to schedule and plan that we can make it work.
Suddenly, *poof*, like magic, all of the problems didn't seem like problems anymore. And the decision felt right. Unlike the overwhelming sensation of drowning I had when we were looking at a January procedure, I have mostly a sense of calm about a February procedure. (I say mostly because I must admit to being slightly anxious about starting shots again tomorrow).
So, there you have it. The long of it (because there really is no short here), is that we have decided to go ahead with a frozen cycle--starting tomorrow!--resulting in an early February procedure and the potential for an Oct/Nov baby. Let's see what happens, shall we?
Before we get back to that part of the story, I have to confess that I there is a rather large piece of the equation regarding our decision to have additional children that I haven't shared, but is a driving force behind my feelings of urgency. That is, once we're done having children, I'm having a hysterectomy. My body and I have never really gotten along in this regard. Whether it was ruptured ovarian cysts, extremely severe Mittelschmerz, endometriosis, or excessively long and heavy periods, I have always felt at war with myself. My cycles started when I was 9 and I was on birth control by age 16 to regulate my body and stop the cysts. However, you (generally) can't be on birth control and have kids. So, those years we were trying to have kids, without success, were particularly difficult for me because I was experiencing horrible physical pain in addition to the crushing sensation of failure each month.
Once we got pregnant with Lil' Bit, I had a reprieve that lasted almost 6 months postpartum, but it all came back with a vengeance. There had been a chance that my system would regulate itself and some of the issues would be gone. Sadly, it was not to be and each month I wait for the pain to begin all over again. Every month that we postponed having another child was another month of agony for me. I wasn't ready to say "no," however, because I knew that once we made that decision, it would foreclose the possibility for good. And so I struggled. I wanted to make sure we made the best decision we could for our family, but I desperately wanted to stop the pain which meant either having kids now, or foreclosing the possibility for good.
So, with that additional background, we find ourselves again in the middle of yet another discussion regarding additional children. Only, it went nothing like I expected. Today was our "drop dead" date for a February procedure because I would have to start shots tomorrow. With that in mind, as we were driving home on Monday, I asked Phil whether he would prefer if we just skipped February. In my mind, I was offering him more time to consider our options, the same way I had when I asked if he wanted to postpone the cycle from a January procedure. So, imagine my surprise when the first words out of his mouth were, "I think I'm okay with February." After I recovered from the mental whiplash I suffered upon processing his answer, I said something to the effect of, "Me, too." Although I certainly had not been expecting that answer, I knew it was what I wanted, so I was going to take him at his word and get the ball rolling.
Still, I wondered how had we gotten here? Only days before, we had both been leaning heavily toward not. I can't speak for Phil, but I know what changed for me. Mainly, I discovered that some part of my brain had been miscalculating the equation. In the midst of all the frustrating and stressful parts of parenting, some piece of me got the idea that the difference between 2 kids and 1 was the same as between 1 and 0. It isn't. Once you have the first, stress and frustration are a given. Not having a second child was not going to make my life stress-free. Lil' Bit would still get on my nerves and warm my heart and do all of the things she does now, regardless of whether we had additional children. Once my mind finally accepted that life was going to be stressful no matter which way we went, I was freed up to say "yes."
I also realized that one of the reasons I would like another child is the chance to pay better attention. When Lil' Bit came along, we had no idea what we were doing as parents. Everything was new and I was exhausted and overwhelmed. Now, I fully expect that there will be periods where I am exhausted and overwhelmed if there are additional children in our future. But, I get the chance to pay attention; to watch the baby grow and learn. To love the newborn when all it is is a lump that needs so much love and attention. I have spoken to or read accounts from many families where parents take great joy in the third or fourth child because they know it will be their last and so they savor every moment. I want to do that. I want to savor the moments because, chances are, this will be it. And, I want to watch both Lil' Bit and the possible future children grow into fully-functioning adults. I want to see who they become and watch how that happens. I want to see how they are different and how they are the same. I want to see them interact as siblings. I can honestly say that I want to have additional children for those children.
In addition, I realized that the 1-year follow-up visits for Lil' Bit aren't set in stone. Medicine is flexible. If and when we get pregnant and have a due date, we can alert the doctors and make sure the visits occur either prior to my due date, or get any number of friends to help us out if we have a newborn or two to deal with. Either way, we can manage it. I have every faith in my ability to schedule and plan that we can make it work.
Suddenly, *poof*, like magic, all of the problems didn't seem like problems anymore. And the decision felt right. Unlike the overwhelming sensation of drowning I had when we were looking at a January procedure, I have mostly a sense of calm about a February procedure. (I say mostly because I must admit to being slightly anxious about starting shots again tomorrow).
So, there you have it. The long of it (because there really is no short here), is that we have decided to go ahead with a frozen cycle--starting tomorrow!--resulting in an early February procedure and the potential for an Oct/Nov baby. Let's see what happens, shall we?
12.31.2011
Holiday Frustrations and Discernments
Traveling over the holidays this year has been more difficult than usual. On the plus side, Lil' Bit met her namesake again and the unseasonably warm weather made driving less treacherous. We also got a chance to go to the movies while Nana watched Lil' Bit; something we haven't done in a while. Still, this has to be one of the most difficult holiday travels:
-We spent 30 minutes in a gas station bathroom changing and washing Lil' Bit and the car seat after she turned into a volcano of vomit. We then purchased an air freshner to prevent me, a sympathetic barfer, from making it worse, but the combo of the two smells gave me a massive headache which caused severe nausea.
-My contacts tore, my back-up glasses broke, and the lenses my doctor's office sent by mail to Tennessee did not arrive before we left. Complete vision fail!
-We got stuck for 2 hours on the Interstate behind an 8-car pile-up with car fire, with a screaming toddler who refused to nap or be placated with her toys, making us late to our destination and requiring us to keep said screaming, tired toddler awake even longer to get her last two med doses in because we missed them due to the whole lateness thing and the two meds have to be given an hour apart.
Had you asked me last year, I would never have said that traveling with a 1-month-old would be easier than a 13-month-old, but it was. It also occurred to me that if we have another child, I won't be abe to sit in back and feed and play with the kids; we'll have to stop a lot more frequently. Needless to say, most of this trip fell heavily into the "only child" side of the baby equation. And yet, I can't help myself. I still want another one. I cannot explain or rationalize it. I have moments when I'm uncertain I can handle the one I have, but it doesn't change how I feel. However, because it is not just my decision, we are still discussing. And, in case you wondered what else might fall in the mix, I present you with two such thoughts:
1). Why are we having additional children? It needs to be because we want that child, not because we want a sibling for Lil' Bit, or a child to take attention away from Lil' Bit's issues. So, can we honestly say it's about wanting another child for that child's sake?
2). If we don't do a February procedure, we likely won't do it before May (March means a due date around Lil' Bit's birthday and April means an Easter procedure and Christmas delivery, which is a definite no). If we do a February procedure, we are setting ourselves up to deal with all of Lil' Bit's 1-year surgical follow-up visits and procedures with a newborn in tow. Is that really a good idea?
The most difficult thing about this decision is that every day I have experiences that land heavily on one side or the other. Very few days are neutral. It's almost never a good idea to make decisions when under stress, but once you are a parent, ALL decisions are made that way. If I pick a rough day to decide, Lil' Bit will be an only child. If I pick a good day, I might believe my coping skills are better than they really are. What if decision day is a good day for one of us, but not the other? Ultimately, how can I trust the final decision we make, no matter which way we decide?
And yet, anything less than a complete "yes" really has to be treated as a "no." Otherwise, we're short-changing ourselves, our marriage, Lil' Bit, and the children-to-be-named-later. It's not the answer I want, but it's the only one that seems to make any sense. So, we continue to talk, to wait, and to discern. And if we miss February, then we miss it. And that hurts. Just typing those words hurts, so deep is my emotional ache for another pregnancy; another child. I want it now. I want it already. I want it yesterday. But, I must remember the wisdom of the Rolling Stones. I may not get what I want, but hopefully, I'll get what I need. I just wish I knew what that was.
-We spent 30 minutes in a gas station bathroom changing and washing Lil' Bit and the car seat after she turned into a volcano of vomit. We then purchased an air freshner to prevent me, a sympathetic barfer, from making it worse, but the combo of the two smells gave me a massive headache which caused severe nausea.
-My contacts tore, my back-up glasses broke, and the lenses my doctor's office sent by mail to Tennessee did not arrive before we left. Complete vision fail!
-We got stuck for 2 hours on the Interstate behind an 8-car pile-up with car fire, with a screaming toddler who refused to nap or be placated with her toys, making us late to our destination and requiring us to keep said screaming, tired toddler awake even longer to get her last two med doses in because we missed them due to the whole lateness thing and the two meds have to be given an hour apart.
Had you asked me last year, I would never have said that traveling with a 1-month-old would be easier than a 13-month-old, but it was. It also occurred to me that if we have another child, I won't be abe to sit in back and feed and play with the kids; we'll have to stop a lot more frequently. Needless to say, most of this trip fell heavily into the "only child" side of the baby equation. And yet, I can't help myself. I still want another one. I cannot explain or rationalize it. I have moments when I'm uncertain I can handle the one I have, but it doesn't change how I feel. However, because it is not just my decision, we are still discussing. And, in case you wondered what else might fall in the mix, I present you with two such thoughts:
1). Why are we having additional children? It needs to be because we want that child, not because we want a sibling for Lil' Bit, or a child to take attention away from Lil' Bit's issues. So, can we honestly say it's about wanting another child for that child's sake?
2). If we don't do a February procedure, we likely won't do it before May (March means a due date around Lil' Bit's birthday and April means an Easter procedure and Christmas delivery, which is a definite no). If we do a February procedure, we are setting ourselves up to deal with all of Lil' Bit's 1-year surgical follow-up visits and procedures with a newborn in tow. Is that really a good idea?
The most difficult thing about this decision is that every day I have experiences that land heavily on one side or the other. Very few days are neutral. It's almost never a good idea to make decisions when under stress, but once you are a parent, ALL decisions are made that way. If I pick a rough day to decide, Lil' Bit will be an only child. If I pick a good day, I might believe my coping skills are better than they really are. What if decision day is a good day for one of us, but not the other? Ultimately, how can I trust the final decision we make, no matter which way we decide?
And yet, anything less than a complete "yes" really has to be treated as a "no." Otherwise, we're short-changing ourselves, our marriage, Lil' Bit, and the children-to-be-named-later. It's not the answer I want, but it's the only one that seems to make any sense. So, we continue to talk, to wait, and to discern. And if we miss February, then we miss it. And that hurts. Just typing those words hurts, so deep is my emotional ache for another pregnancy; another child. I want it now. I want it already. I want it yesterday. But, I must remember the wisdom of the Rolling Stones. I may not get what I want, but hopefully, I'll get what I need. I just wish I knew what that was.
12.21.2011
The Power of Routine
Last week, one of my friends at work noted that we must be getting into the groove with Lil' Bit's meds because I seemed much calmer. I suppose that's true, although I don't feel particularly calm most days. Glad I can still fake it :) Anyway, her statement made me think. There is something to the power of routine. It's how we sleep-train kids-Bath, Jammies, Book, Bedtime. Each night, once the routine occurs, they learn to expect what happens next--lights out, door closed, sleep time. So, even though interrupting our day 6 times for mediation still is frustrating, as is waiting the additional 20 minutes each time to make sure the dose takes, we're much better at it. We have something that resembles a routine and it has made life simpler. That is not to say life has been anything close to simple. All of this craziness on top of Advent was bound to be problematic--and it has been. But we have managed to stay married and not to kill each other or lose any fingers or toes. All in all, I think we're doing well.
In the process of working on things, we had a fascinating discussion last night as we were contemplating whether we were going to go forward with another IVF cycle. Yes, dear readers, the lack of posts about shots and prep is not because we're being quiet this time around. It's because we postponed it. Knowing that stress is such a huge factor in whether a cycle is successful, and both of us feeling that we were in way over our heads, we called the center and pushed our cycle out one month, with the option to push it back further, if necessary. We are now figuring out whether we are willing to go ahead this month, or wait a while longer, or do it at all. In that vein, we wanted to wait until Lil' Bit had her follow-up appointment with her pulmonary hypertension specialist yesterday.
Before we get back to the fascinating baby conversation, take another quick detour with me as I summarize where we stand with Lil' Bit's treatment:
1) We can finally stop one of her three meds (after weaning for 1 week). Hooray! Happy dance! *Insert other related excitement responses here*
2) Her two other meds are still 2 and 4 times a day, respectively, and can't be within an hour of each other. So, meds still 6X per day. Boo!
3) Her pressures did not go down, but they also did not go up. *Insert neutral response here*
4) Her condition is likely chronic, but that doesn't mean she won't get off the meds. There are generally no concerns for children with pressures where hers are currently, but they want to keep her on the meds for about a year to see if the pressures will go down further. *Neutral response, maybe slightly positive*
5) She doesn't need to go back to the doctor for 3 months and won't have to have a heart cath for probably a year! Yay!!!! *repeat*
6) She still has to have monthly blood tests for one of her meds. Boo!! *repeat*
7) She can go back to daycare in January! Woo freakin' who!!! [This is, truly, what will save our lives! As a brief aside--a giant thank-you to those ladies who have come to watch Lil' Bit at our house so I could go back to work!!!]
In sum, still lots to do, but generally good news. Lil' Bit it doing great. In fact, you would think she's on speed with all the extra energy she now has, which is, apparently, fairly common in children who undergo heart surgery.
We return, now, to last night's baby conversation. *Spoiler alert* We still haven't decided where we are. But in the process of talking about it, something interesting came up. Phil was talking about how difficult it had been to interrupt his day to have to come home and give Lil' Bit meds at various times. We discovered that he was experiencing something akin to the frustration I had felt when I had to do all the pumping. Before I moved to a 4 or even 3-a-day schedule, I had been pumping 6 times a day, roughly every 4 hours. Count 45 minutes for prep and pumping and another 15 for clean up, and it honestly felt like all I did was pump. I would just get started on something else when I would have to go back and pump. Likewise, Phil would get started on a project and suddenly discover that he had to run home and medicate Lil' Bit. 5 minutes of driving, 10 minutes of prep, 5 minutes of feeding meds (if lucky), 20 minutes of waiting to see if they took, 5 minutes driving back and *poof* he was losing multiple hours each day. In the midst of this discussion, we both became more cognizant of the toll things were taking on us. He had a better understanding of how difficult pumping had been, and I had a better understanding of how coming home to give meds was affecting him. And we both became aware that it was the disruption to our routine that was causing so much stress. As we talked about what it would mean to have Lil' Bit back in daycare so that much of our routine could return, we began to see a light at the end of the tunnel. Routine, it turns out, is important for more than getting babies to sleep.
Ultimately, it was a good and important moment in the conversation because we were both reminded that stress, frustration, and lack of sleep are mutual enemies, against which we must present a united front. By recognizing that we are both "done," we are much better out being less snippy and not taking our stress out on the other person. Don't get me wrong, we're far from perfect, but I think we're doing a pretty good job.
In any event, here we are. No decisions on a second child and still somewhat stressed by the first. But things are improving, and time is passing, and we're getting settled into a routine. Which begs the question--do we really want to wreck our new routine when we're just figuring it out? Stay tuned, dear readers, to find out if we're crazy enough to attempt it.
11.24.2011
Assumptions
I have started several posts about our time at the hospital for Lil' Bit's surgery, and may or may not get around to finishing and posting them. For now, we'll talk about today. Today was to be our triumphant return. Discharge day. And it was. Sort of. We are all home and, although totally exhausted, we are doing fairly well. But I relearned a few lessons today.
First, I relearned not to make assumptions. This lesson came upon the discovery that I had, in fact, made a giant assumption. I did not realize I had, but I did. I had assumed that surgery would "fix" my child. Sure, it would be difficult and emotionally taxing and recovery would be hard. But, in the end, surgery would either fix my child, or it wouldn't. I never considered what would be involved during the waiting to find out period. You know, the period where you get to bring them home, but you still have to give them meds. That's right meds. It never occurred to me that when I brought my child home she would be on medication, let alone three different meds multiple times per day. Oh, and did I mention that they all tend to make her vomit? We have learned a few tricks and most of the time they work. But today we had 5 administrations for 3 doses, and lots of "clean up on isle mommy." I hate holding my screaming child and trying to get her to take medication I know she needs. I really hate having to do it 6 times per day. I'm freaked out that I will have to start doing it 8 times a day once the third med finally arrives. Yeah. About that third med. It's one of those black box medicines that I will need gloves to handle because I've signed up for another round of IVF and we will have to use separate syringes and pill crushers for. *sigh*
As I sat on the floor, trying to be calm (but probably failing miserably) during the last medicine administration, I got angry and couldn't quite figure out why. Until, thud, it finally hit me that I had made this giant assumption that once we brought her home, even if she wasn't fixed, we would be done for now. I don't know why I never considered ongoing treatment such as meds, I just didn't. And, quite honestly, I'm just thrilled that she didn't have to come home with an NG tube (and even more thrilled that I didn't have to be trained how to put one in and take one out)!
This leads me to my second assumption. I assumed that I was prepared to have her home. I expected the return home to be a great relief. Instead, I felt the same panic as last year when I brought home a newborn and wondered what the heck I was supposed to do with her. The panic is the same, but the specifics are different: What happens if she still won't drink whole milk or Pediasure? (This issue is the subject of a post in progress about poor planning on my part). What happens when she vomits up the meds at home? How do we get her to take them when all the tricks we learned failed? How long after taking the meds does vomiting count as not having gotten the dose? (Apparently, the answer to this for our purposes is 20 minutes).
All of these are difficult things to handle by themselves. Doing them on little sleep, after a long day of travel, with nerves and emotions still raw from 2 1/2 weeks of adrenaline and anxiety, is damn near impossible. And yet, we managed to get her meds in her, give her a bath, and get her to bed. We have overnight meds we have to set an alarm for and lots of other challenges ahead of us. We're creating a chart so we can track and make sure we have given her all her meds-- a necessity, since we're lucky to remember our own names these days.
But we're home. And she's doing amazing. And we're taking things one day at a time. Which is, in fact, the only way anything can be done. We live life, whatever challenges, joys, successes, and sorrows come our way, the only way we can. One day at a time. One minute at a time. One moment at a time. Sometimes, though, it takes a giant 2x4 upside the head to remember that lesson. And man, do I have quite a headache.
First, I relearned not to make assumptions. This lesson came upon the discovery that I had, in fact, made a giant assumption. I did not realize I had, but I did. I had assumed that surgery would "fix" my child. Sure, it would be difficult and emotionally taxing and recovery would be hard. But, in the end, surgery would either fix my child, or it wouldn't. I never considered what would be involved during the waiting to find out period. You know, the period where you get to bring them home, but you still have to give them meds. That's right meds. It never occurred to me that when I brought my child home she would be on medication, let alone three different meds multiple times per day. Oh, and did I mention that they all tend to make her vomit? We have learned a few tricks and most of the time they work. But today we had 5 administrations for 3 doses, and lots of "clean up on isle mommy." I hate holding my screaming child and trying to get her to take medication I know she needs. I really hate having to do it 6 times per day. I'm freaked out that I will have to start doing it 8 times a day once the third med finally arrives. Yeah. About that third med. It's one of those black box medicines that I will need gloves to handle because I've signed up for another round of IVF and we will have to use separate syringes and pill crushers for. *sigh*
As I sat on the floor, trying to be calm (but probably failing miserably) during the last medicine administration, I got angry and couldn't quite figure out why. Until, thud, it finally hit me that I had made this giant assumption that once we brought her home, even if she wasn't fixed, we would be done for now. I don't know why I never considered ongoing treatment such as meds, I just didn't. And, quite honestly, I'm just thrilled that she didn't have to come home with an NG tube (and even more thrilled that I didn't have to be trained how to put one in and take one out)!
This leads me to my second assumption. I assumed that I was prepared to have her home. I expected the return home to be a great relief. Instead, I felt the same panic as last year when I brought home a newborn and wondered what the heck I was supposed to do with her. The panic is the same, but the specifics are different: What happens if she still won't drink whole milk or Pediasure? (This issue is the subject of a post in progress about poor planning on my part). What happens when she vomits up the meds at home? How do we get her to take them when all the tricks we learned failed? How long after taking the meds does vomiting count as not having gotten the dose? (Apparently, the answer to this for our purposes is 20 minutes).
All of these are difficult things to handle by themselves. Doing them on little sleep, after a long day of travel, with nerves and emotions still raw from 2 1/2 weeks of adrenaline and anxiety, is damn near impossible. And yet, we managed to get her meds in her, give her a bath, and get her to bed. We have overnight meds we have to set an alarm for and lots of other challenges ahead of us. We're creating a chart so we can track and make sure we have given her all her meds-- a necessity, since we're lucky to remember our own names these days.
But we're home. And she's doing amazing. And we're taking things one day at a time. Which is, in fact, the only way anything can be done. We live life, whatever challenges, joys, successes, and sorrows come our way, the only way we can. One day at a time. One minute at a time. One moment at a time. Sometimes, though, it takes a giant 2x4 upside the head to remember that lesson. And man, do I have quite a headache.
11.16.2011
Mixed Emotions
It's been a strange few weeks here at the hospital. As previously mentioned in other posts, Phil and I have been discussing having another baby, but we were waiting to hear the outcome of Lil' Bit's surgery to make any final decision. Well, since everything was looking so good for her to go home on the 14th, we called the fertility center on the 12th and paid our deposit for an FET (frozen embryo transfer). Of course, it was over the weekend, after we did that, the world went sideways. Lil' Bit stopped holding down food and her discharge got delayed. Then came the second-guessing. Should we have waited longer to decide? Ultimately, it doesn't really matter. The decision is just as over as the Peloponnesian War.
So, this week I called the center and made an appointment for some tests I have to have this month. If all goes well, I start meds around December 6 for a January procedure and September baby. As excited as I am, there is some piece of me that keeps screaming in the background: "Are you crazy?! You're not ready to do this again!" And yet, even with all I have seen here and everything we have gone through with Lil' Bit, I want another baby. I want Lil' Bit to have a sibling. I want another child to help keep me from being over-protective of Lil' Bit--someone that will help me treat her like a normal kid.
At the same time, however, I have to temper all these wants and hopes with the fact that nothing is certain. Just because it only took one round of IVF for Lil' Bit is no guarantee that things will work this time. It certainly improves our odds, and I definitely feel more positive than I did last time that things will work. Nevertheless, I have to remember that just because we have signed up to do another procedure is no guarantee of another child. On the flip side, even if it works, there's no guarantee we'll only get one. My dear friend keep threatening that we'll have triplets --a pair and a spare as she likes to say. We'll cross that bridge when we get to it. For now, all we can do is move ahead with our decision, knowing it's what we want to do. Whether we get none, one, or multiples, we'll get what we get, and we'll deal with it when we get to that point. For now, it's nice to have a little bit of excitement and hope growing in my heart as I (ever so impatiently) wait for Lil' Bit to get out of the ICU.
So, this week I called the center and made an appointment for some tests I have to have this month. If all goes well, I start meds around December 6 for a January procedure and September baby. As excited as I am, there is some piece of me that keeps screaming in the background: "Are you crazy?! You're not ready to do this again!" And yet, even with all I have seen here and everything we have gone through with Lil' Bit, I want another baby. I want Lil' Bit to have a sibling. I want another child to help keep me from being over-protective of Lil' Bit--someone that will help me treat her like a normal kid.
At the same time, however, I have to temper all these wants and hopes with the fact that nothing is certain. Just because it only took one round of IVF for Lil' Bit is no guarantee that things will work this time. It certainly improves our odds, and I definitely feel more positive than I did last time that things will work. Nevertheless, I have to remember that just because we have signed up to do another procedure is no guarantee of another child. On the flip side, even if it works, there's no guarantee we'll only get one. My dear friend keep threatening that we'll have triplets --a pair and a spare as she likes to say. We'll cross that bridge when we get to it. For now, all we can do is move ahead with our decision, knowing it's what we want to do. Whether we get none, one, or multiples, we'll get what we get, and we'll deal with it when we get to that point. For now, it's nice to have a little bit of excitement and hope growing in my heart as I (ever so impatiently) wait for Lil' Bit to get out of the ICU.
11.15.2011
Lessons From the ICU
Tom Petty said it best--the waiting is the hardest part.
Here I sit, a full week after Lil' Bit's open-heart surgery, and we still don't know when we'll go home. With her first birthday coming this weekend, and Thanksgiving next week, I am more than ready to be home. But, as with most things related to Lil' Bit, I am not the one in control; she is. Surgery went extremely well and she was on track to go home yesterday. However, over the weekend she couldn't keep anything down, including the meds she needed to keep her heart pressures in line. So, she's still in ICU, while they try and get those pressures in line.
Making matters worse is that Lil' Bit isn't drinking much of anything (she is a great eater though). This is, ironically, a problem of my own making. She never took to drinking juice or water, and I never saw much reason to force her since she ate well and drank lots of milk. I had managed to pump enough to almost make it to her first birthday. Sadly, I didn't quite make it; we ran out--just before surgery. So, Lil' Bit wakes up at the hospital and all there is to drink is stuff she's never had before. It never occurred to me that my pumping & freezing plan would have such a major flaw. On the plus side, she's making progress with whole milk, and today she drank strawberry Pediasure, so they won't have to stuff it down a feeding tube. Still, if we ever needed more evidence that's she a stubborn one, this is it.
Not surprisingly, I can't control the doctors, or Lil' Bit's response to the meds, or make her eat, or make her nap. So, I am really struggling. Xanax has become my new best friend. It really helps keep the edge off. Text and Facebook support, calls from my mom, and my in-laws' continued presence all help too. Still, there are days I am ready to cry, scream, or both, at the drop of a hat.
The waiting isn't fruitless, though. In waiting and learning the stories of other families, I am grateful that Lil' Bit is otherwise healthy. So far, she has had 6 roommates. Among them, an asthamatic; another cardiac patient who had surgery the day after, but has already been released; and two neuro patients--one 7 years old, and one 5 months old who has already had 4 surgeries. Elsewhere in the ICU are cardiac patients only months old, babies with RSV and whooping cough, a baby with double pneumonia and MRSA, and myriad other conditions. But, severity and longevity in ICU don't matter. What I discovered is that I am now a member of the club. Because all of these parents get it. Whether their child is in for a day, a month, or longer, they have all felt the tedium of waiting. They have all gotten tired of doctors and labs and tubes attached to their children. They all know that they cannot bear to eat another bite of Subway, Wendy's, Quiznos, or Biggby. And yet, we all cheer when someone graduates to go home. And we all grieve when a child is lost. And we all support one another as we wait. This support is sometimes all it takes to get through one minute, and then another, and another, until you look up and, finally, it's your turn to go home. It is an amazing experience of grace and love and community, and I am humbled to be a part of it.
But, in case you were wondering, it doesn't make waiting any easier.
Here I sit, a full week after Lil' Bit's open-heart surgery, and we still don't know when we'll go home. With her first birthday coming this weekend, and Thanksgiving next week, I am more than ready to be home. But, as with most things related to Lil' Bit, I am not the one in control; she is. Surgery went extremely well and she was on track to go home yesterday. However, over the weekend she couldn't keep anything down, including the meds she needed to keep her heart pressures in line. So, she's still in ICU, while they try and get those pressures in line.
Making matters worse is that Lil' Bit isn't drinking much of anything (she is a great eater though). This is, ironically, a problem of my own making. She never took to drinking juice or water, and I never saw much reason to force her since she ate well and drank lots of milk. I had managed to pump enough to almost make it to her first birthday. Sadly, I didn't quite make it; we ran out--just before surgery. So, Lil' Bit wakes up at the hospital and all there is to drink is stuff she's never had before. It never occurred to me that my pumping & freezing plan would have such a major flaw. On the plus side, she's making progress with whole milk, and today she drank strawberry Pediasure, so they won't have to stuff it down a feeding tube. Still, if we ever needed more evidence that's she a stubborn one, this is it.
Not surprisingly, I can't control the doctors, or Lil' Bit's response to the meds, or make her eat, or make her nap. So, I am really struggling. Xanax has become my new best friend. It really helps keep the edge off. Text and Facebook support, calls from my mom, and my in-laws' continued presence all help too. Still, there are days I am ready to cry, scream, or both, at the drop of a hat.
The waiting isn't fruitless, though. In waiting and learning the stories of other families, I am grateful that Lil' Bit is otherwise healthy. So far, she has had 6 roommates. Among them, an asthamatic; another cardiac patient who had surgery the day after, but has already been released; and two neuro patients--one 7 years old, and one 5 months old who has already had 4 surgeries. Elsewhere in the ICU are cardiac patients only months old, babies with RSV and whooping cough, a baby with double pneumonia and MRSA, and myriad other conditions. But, severity and longevity in ICU don't matter. What I discovered is that I am now a member of the club. Because all of these parents get it. Whether their child is in for a day, a month, or longer, they have all felt the tedium of waiting. They have all gotten tired of doctors and labs and tubes attached to their children. They all know that they cannot bear to eat another bite of Subway, Wendy's, Quiznos, or Biggby. And yet, we all cheer when someone graduates to go home. And we all grieve when a child is lost. And we all support one another as we wait. This support is sometimes all it takes to get through one minute, and then another, and another, until you look up and, finally, it's your turn to go home. It is an amazing experience of grace and love and community, and I am humbled to be a part of it.
But, in case you were wondering, it doesn't make waiting any easier.
Subscribe to:
Posts (Atom)