Pretty hard to believe Noah Stephen is really 13!!
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| Birthday party |
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| He's needed this electric shaver for some time now... and who doesn't need a little Jonathan Edwards? |
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| Such a handsome dude |
Wednesday, February 26, 2014
Teenager in residence
Friday, February 21, 2014
Home pictures
So, you've already read Carissa's emotional explanation of our transition home. Here's mine in photos.
Well, I guess I just have one thing to add before the pictures...
It was at 19 weeks gestation that Carissa and I went in to Dr. Schoenmaker's office for our routine 20 week OB ultrasound. You always have that small fear that they're going to find something bad on those things, but really we were mostly excited to find out the gender of our baby. We were both sort of torn. We wanted a boy because we still had lots of boy clothes around and were just used to boys. I had this idea that the boy being the baby in a family usually goes better than if a girl is the baby of the family (there isn't much logic to that, but it was in my head that way). Not to mention 4 weddings in the budget seemed worse than 3! But, we also wanted a girl since we've been not a small bit overwhelmed and irritated with toddler boy issues lately. So, we were really ready and excited for anything. The tech told us it was a girl and my mind started whirring into the future -- picturing a cute little face, the hair braids and ribbons, the dresses and tights, gentlemen callers, walking her down the aisle... the usual girl stuff. Then Dr. Schoenmaker came in. There was the usual congratulations and the, "She looks great!" Then came the "but". "But, there is this funny bright spot here in the heart -- an echogenic focus. Nine times out of ten it doesn't mean anything, but I'm also a little bit concerned with the size of the left ventricle. I'm hoping it won't be a big deal, but let's set you up with a better fetal echocardiogram just to be sure. It is the heart and we don't want any surprises at the delivery."
We left reassured. Probably nothing. When you run tests like this, you're bound to find small "abnormal" but insignificant things. Echogenic focus. I resisted the urge to do a little research. I did after a couple days. Of course you discover everything from normal variant to catastrophic heart disease and the sign of potentially life threatening chromosomal abnormality. I quickly shut down my research and just decided to wait for better information. About 3 weeks later we got that information at our first of many fetal echos. We came home with our pamphlets on HLHS. The clouds descended over the home and we began our 4 month worry and anticipation of all that we just went through.
We had no idea. Well, we had an idea. The doctors at U of M prepared us as well as they could -- but you could just tell they were holding something back. You sensed that it actually might be worse than they were letting on. They would give it to us in layers and each layer added more intensity, more fear, more worry, more mystery. But, no fault of theirs, you just can't prepare someone for something like this. There aren't really words. You just have to get thrown in and see how you all come out at the other end.
I'm probably re-hashing old ideas that we've already written about. Someday, I'll go back and re-read all the previous posts. My main thought I'm driving at is that we are finally on the other side of the Norwood surgery hospital stay, which is usually the worst part. We had a lot of fear about how this little girl would come into this world. One of our biggest fears was whether we'd ever bring her home. Home. Here, in this place. With these people that we've loved and nurtured along as best we can. Noah turns 13 next week. He's such a great guy and becoming a man before our eyes. He gave us a run for our money from ages 1.5 to 4.5 (that was a rough 3 years for us at the time -- we figured we were the worst parents on the planet given his behavior). But, he has so much he can teach Louisa. If only the Lord would give her many years to be loved by him. Natalie is also becoming such a wonderful young woman. She is creative and labored for months crocheting that amazing blanket for Louisa. The blanket that her mom wouldn't let go of for the 4 days and nights Louisa was on ECMO. Would we really have to bring that blanket back to Natti without the baby she made it for? And Francesca. You can see her young motherly instincts developing (she asks to hold her more than anyone else in the family!). She would say every night before Louisa was born that she just couldn't wait to hold Louisa. Would she ever hold her in her arms? Donavon has been challenging. His attachment issues have been difficult. One of the reasons Carissa talked me into having another baby was to "hem the boys in". We thought it would be good for them to experience the joy of bringing a new member into our family. Would they not know that joy? Maizy has never experienced her mommy growing a new baby and welcoming a sister into the fold. She wouldn't go to bed at night without kissing Carissa's tummy and saying, "Goodnight Louisa!" Would she not get to kiss Louisa's little head before bed? And Kelvin. Hmm, 3 year old boys are a challenge. Would a baby sister soften his edges? And Louisa. What an amazing opportunity for our family to watch the Lord work miracles in our midst. Would He do that for us? He's under no obligation. We don't deserve the miracle. It would be because He is a loving Father and that He loves to give good gifts and answer our prayers. And would He use this as a thing all nine of us would look back on and say, "It doesn't always seem like the Lord is faithful. The world is a scary place and there are lots of messes. Even in this family, we've made a lot of messes and disappointed each other. BUT, He is faithful. Look at our dear daughter Louisa. Look at your dear sister Louisa. She isn't perfect, and never will be, but here she is in our arms, in our home, in our lives. He is faithful."
We still don't know how long Louisa will be with us. But, today she turned one month old and right now Francie is holding her tight on the couch. We've learned a lot this month. It was hard. But I wouldn't trade it for anything else. It's definitely worth it. That last picture at the bottom of all seven sums it up for me. They don't look their best, they're a little worn from the battle (and you didn't hear us saying, "Kelvin, sit still; Maizy, smile; Donavon, no gang signs" in order to get that shot). But there's all seven of them together on our stained IKEA couch. A pain in the butt, each of them in their own ways. But a gift, each one of them in so many ways. I love you guys.
Well, I guess I just have one thing to add before the pictures...
It was at 19 weeks gestation that Carissa and I went in to Dr. Schoenmaker's office for our routine 20 week OB ultrasound. You always have that small fear that they're going to find something bad on those things, but really we were mostly excited to find out the gender of our baby. We were both sort of torn. We wanted a boy because we still had lots of boy clothes around and were just used to boys. I had this idea that the boy being the baby in a family usually goes better than if a girl is the baby of the family (there isn't much logic to that, but it was in my head that way). Not to mention 4 weddings in the budget seemed worse than 3! But, we also wanted a girl since we've been not a small bit overwhelmed and irritated with toddler boy issues lately. So, we were really ready and excited for anything. The tech told us it was a girl and my mind started whirring into the future -- picturing a cute little face, the hair braids and ribbons, the dresses and tights, gentlemen callers, walking her down the aisle... the usual girl stuff. Then Dr. Schoenmaker came in. There was the usual congratulations and the, "She looks great!" Then came the "but". "But, there is this funny bright spot here in the heart -- an echogenic focus. Nine times out of ten it doesn't mean anything, but I'm also a little bit concerned with the size of the left ventricle. I'm hoping it won't be a big deal, but let's set you up with a better fetal echocardiogram just to be sure. It is the heart and we don't want any surprises at the delivery."
We left reassured. Probably nothing. When you run tests like this, you're bound to find small "abnormal" but insignificant things. Echogenic focus. I resisted the urge to do a little research. I did after a couple days. Of course you discover everything from normal variant to catastrophic heart disease and the sign of potentially life threatening chromosomal abnormality. I quickly shut down my research and just decided to wait for better information. About 3 weeks later we got that information at our first of many fetal echos. We came home with our pamphlets on HLHS. The clouds descended over the home and we began our 4 month worry and anticipation of all that we just went through.
We had no idea. Well, we had an idea. The doctors at U of M prepared us as well as they could -- but you could just tell they were holding something back. You sensed that it actually might be worse than they were letting on. They would give it to us in layers and each layer added more intensity, more fear, more worry, more mystery. But, no fault of theirs, you just can't prepare someone for something like this. There aren't really words. You just have to get thrown in and see how you all come out at the other end.
I'm probably re-hashing old ideas that we've already written about. Someday, I'll go back and re-read all the previous posts. My main thought I'm driving at is that we are finally on the other side of the Norwood surgery hospital stay, which is usually the worst part. We had a lot of fear about how this little girl would come into this world. One of our biggest fears was whether we'd ever bring her home. Home. Here, in this place. With these people that we've loved and nurtured along as best we can. Noah turns 13 next week. He's such a great guy and becoming a man before our eyes. He gave us a run for our money from ages 1.5 to 4.5 (that was a rough 3 years for us at the time -- we figured we were the worst parents on the planet given his behavior). But, he has so much he can teach Louisa. If only the Lord would give her many years to be loved by him. Natalie is also becoming such a wonderful young woman. She is creative and labored for months crocheting that amazing blanket for Louisa. The blanket that her mom wouldn't let go of for the 4 days and nights Louisa was on ECMO. Would we really have to bring that blanket back to Natti without the baby she made it for? And Francesca. You can see her young motherly instincts developing (she asks to hold her more than anyone else in the family!). She would say every night before Louisa was born that she just couldn't wait to hold Louisa. Would she ever hold her in her arms? Donavon has been challenging. His attachment issues have been difficult. One of the reasons Carissa talked me into having another baby was to "hem the boys in". We thought it would be good for them to experience the joy of bringing a new member into our family. Would they not know that joy? Maizy has never experienced her mommy growing a new baby and welcoming a sister into the fold. She wouldn't go to bed at night without kissing Carissa's tummy and saying, "Goodnight Louisa!" Would she not get to kiss Louisa's little head before bed? And Kelvin. Hmm, 3 year old boys are a challenge. Would a baby sister soften his edges? And Louisa. What an amazing opportunity for our family to watch the Lord work miracles in our midst. Would He do that for us? He's under no obligation. We don't deserve the miracle. It would be because He is a loving Father and that He loves to give good gifts and answer our prayers. And would He use this as a thing all nine of us would look back on and say, "It doesn't always seem like the Lord is faithful. The world is a scary place and there are lots of messes. Even in this family, we've made a lot of messes and disappointed each other. BUT, He is faithful. Look at our dear daughter Louisa. Look at your dear sister Louisa. She isn't perfect, and never will be, but here she is in our arms, in our home, in our lives. He is faithful."
We still don't know how long Louisa will be with us. But, today she turned one month old and right now Francie is holding her tight on the couch. We've learned a lot this month. It was hard. But I wouldn't trade it for anything else. It's definitely worth it. That last picture at the bottom of all seven sums it up for me. They don't look their best, they're a little worn from the battle (and you didn't hear us saying, "Kelvin, sit still; Maizy, smile; Donavon, no gang signs" in order to get that shot). But there's all seven of them together on our stained IKEA couch. A pain in the butt, each of them in their own ways. But a gift, each one of them in so many ways. I love you guys.
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| Louisa's last few hours in the hospital while mom and dad pack up! |
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| Heading out! Do we look panicked? We are! |
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| Ahh, the car seat! This was my prayer ever since that awful day after surgery -- that she'd get back in our arms (check), in her car seat (check), and in our home (check -- see below). |
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| First feed at home! We already goofed and were about 40 minutes late with the feeding. She seemed ok with it. |
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| Here's our mini C.S. Mott Children's Hospital at home. The doctor here is world famous and the nurse is amazing! |
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| Meds! Do you think we stock-piled enough syringes? Thanks nurses! |
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| And here they are! All seven on our own couch! If you think we have time to bathe them and help them get dressed, you're wrong. Most of them have been in their jammies since Tuesday. |
Wednesday, February 19, 2014
Guest Blogger: Carissa
Can you be a guest blogger on a blog you started? I haven't really been able to string two coherent thoughts together in the past month or so, but I wanted to try and get a few things out.
We are home. With our baby. I still can't believe that I can write those words. This morning we got to snuggle with Louisa in our own bed with one little girl on each side of her holding her hands and stroking her hair and just looking at her. Will I ever go a day without crying again? This morning they were some happy tears.
We left home the night before Louisa's birth a little over 4 weeks ago and stayed at the Holiday Inn Express in Ann Arbor as we had to be at the hospital early Tuesday morning for the C-section. It feels like a lifetime ago now. Those memories are already so fuzzy in my head. We had no idea what was awaiting our family. I've looked at the pictures a few times and it doesn't seem real. On Friday, January 24, we came very close to losing our little girl. They finally "stabilized" her on ECMO and we got to see her. There was nothing "little girl" about her. She was just an extension of those machines. There were only a couple places we could even touch her. And those machines were beeping constantly. There were 2-3 caregivers at her bedside 24 hours a day for the 4 longest days of my life. It felt like all we could do was watch the clock helplessly and pray for the hours to pass without another nightmare. I was afraid of her -- afraid to look at her, afraid to touch her, afraid to let myself love her because I was so terrified of losing her. It was easier to think of her as part of the machines and not really my baby. Now she is 4 weeks old and I love her so much. It's still scary to love her, but she is a gift in a different way than I have ever known with my other kids. Every time I look at her I am amazed that she is alive. Maybe that amazement will wear off at some point, but it hasn't yet. What a merciful and gracious God we serve! I pleaded for mercy and He granted it. The Lord literally spared her from death and every day that we have with her is a miracle. I was reminded of this passage from one of my favorite books, Stepping Heavenward by Elizabeth Prentiss: "What should we do without her gentle, loving presence, whose frailty calls forth our tenderest affections and whose sweet face makes sunshine in the shadiest places! What this child is to me I cannot tell. And yet, if the skillful and kind Gardener should house this delicate plant before frosts come, should I dare to complain?" That is my prayer and at various times in this trial I have felt deep fear that I am not truly willing to lay her down on the alter and rejoice no matter what the Lord calls me to do. One of our dear elders wrote to me during one of those times when I feared I wouldn't be faithful enough in the darkness: "Take courage that His grace is sufficient and His love is sufficient! Even if you doubt, even if you are terrified, even if you are too afraid to move, the Lord will prove faithful. Your faith doesn't have to have any special quality for Him to prove faithful. Hallelujah that this outcome depends not on our faith but on the object of our faith. And just like Stephen and the martyrs God will give the grace that is needed for each hour and minute." The thankfulness I have felt for the encouragement and wisdom from beloved brothers and sisters at key times is hard to describe.
It'll be a new normal. That's what everyone in the hospital kept saying. Things aren't going to be the same. When we got to our infant cpr class at the hospital, the teacher asked if anyone had a cardiac baby who had the Norwood surgery... when we said yes, she gave us that look like, "oh, so you guys really need to know this." And then later she was telling one of the other moms that a baby's heart doesn't usually just stop, and I couldn't help blurting out, "well, ours already did!" And she gave me that look again, "well, yeah, you guys have a hypoplast, that's different." So I get the shakes again for a minute and then move on... right, new normal. We don't know if there will be long-term issues with the cardiac arrest and brain bleed. We do know her left ventricle will never work. She'll always live with half a heart. The next 6 months while we go through this "interstage" period, she is at risk for sudden death. We have little cards that we're supposed to carry in our wallets that say that and they also explain to emergency personnel that her oxygen saturation should be between 75 and 85% so they don't treat her like a normal kid and over-oxygenate her which could cause heart failure. We don't know if she'll be able to have babies, we don't know if her half a heart will start to get tired in her 20's or 30's... But now I totally get why when I tried to ask the cardiologist some of those long-term prognosis questions at one of the fetal echo appointments during pregnancy, he looked at me with compassion and said, "We've got a lot to get through before that. Let's take it one step at a time." So for now we have to figure out her care at home with the other kids in the mix. Nick was home today and my sister came to help and this would really be no problem if there were 3 adults here at all times!! I have felt inadequate before in my life, but this is a new level of inadequacy. Until her 2nd surgery we have to feed her every 3 hours around the clock and for now we have to try feeding her with a bottle for 10-20 minutes and then finish the rest of the feeding by tube. And she has meds 3 times a day. And I have to pump. And we have to weigh her and check her oxygen saturation levels and fill out logs to report back to her care team at U of M. We have visiting nurses coming, seemingly endless phone calls with the insurance people and appointments back in Ann Arbor every week for a time. And there are 6 other kids that would really like some attention after their parents were gone for 4 weeks! And a couple of them have some lingering attachment issues and did I mention their parents left them for 4 weeks?! And then all of a sudden she seems to be breathing too fast and she gets a little dusky and my fears surface again and I forget what I was supposed to be doing, and I start to feel lightheaded and shaky and my mind slips back to that Friday... BUT! He is good. We know on a deeper level that the Lord has numbered all our days and that He is so good. On the worst day when it felt like everything in the room turned to jello and I couldn't think or stand up, the Lord was still faithful. The anchor held. And I know without a shadow of a doubt that it always will, no matter what happens with our sweet girl or with anything else for that matter. Nick has said to me an endless number of times in the past 4 weeks, "we're going to be ok." And I know it's true when I remember to keep my eyes fixed on the source of my secure and eternal joy. Praise the Lord that he allowed me to see that and long for it in a new way.
We are home. With our baby. I still can't believe that I can write those words. This morning we got to snuggle with Louisa in our own bed with one little girl on each side of her holding her hands and stroking her hair and just looking at her. Will I ever go a day without crying again? This morning they were some happy tears.
We left home the night before Louisa's birth a little over 4 weeks ago and stayed at the Holiday Inn Express in Ann Arbor as we had to be at the hospital early Tuesday morning for the C-section. It feels like a lifetime ago now. Those memories are already so fuzzy in my head. We had no idea what was awaiting our family. I've looked at the pictures a few times and it doesn't seem real. On Friday, January 24, we came very close to losing our little girl. They finally "stabilized" her on ECMO and we got to see her. There was nothing "little girl" about her. She was just an extension of those machines. There were only a couple places we could even touch her. And those machines were beeping constantly. There were 2-3 caregivers at her bedside 24 hours a day for the 4 longest days of my life. It felt like all we could do was watch the clock helplessly and pray for the hours to pass without another nightmare. I was afraid of her -- afraid to look at her, afraid to touch her, afraid to let myself love her because I was so terrified of losing her. It was easier to think of her as part of the machines and not really my baby. Now she is 4 weeks old and I love her so much. It's still scary to love her, but she is a gift in a different way than I have ever known with my other kids. Every time I look at her I am amazed that she is alive. Maybe that amazement will wear off at some point, but it hasn't yet. What a merciful and gracious God we serve! I pleaded for mercy and He granted it. The Lord literally spared her from death and every day that we have with her is a miracle. I was reminded of this passage from one of my favorite books, Stepping Heavenward by Elizabeth Prentiss: "What should we do without her gentle, loving presence, whose frailty calls forth our tenderest affections and whose sweet face makes sunshine in the shadiest places! What this child is to me I cannot tell. And yet, if the skillful and kind Gardener should house this delicate plant before frosts come, should I dare to complain?" That is my prayer and at various times in this trial I have felt deep fear that I am not truly willing to lay her down on the alter and rejoice no matter what the Lord calls me to do. One of our dear elders wrote to me during one of those times when I feared I wouldn't be faithful enough in the darkness: "Take courage that His grace is sufficient and His love is sufficient! Even if you doubt, even if you are terrified, even if you are too afraid to move, the Lord will prove faithful. Your faith doesn't have to have any special quality for Him to prove faithful. Hallelujah that this outcome depends not on our faith but on the object of our faith. And just like Stephen and the martyrs God will give the grace that is needed for each hour and minute." The thankfulness I have felt for the encouragement and wisdom from beloved brothers and sisters at key times is hard to describe.
It'll be a new normal. That's what everyone in the hospital kept saying. Things aren't going to be the same. When we got to our infant cpr class at the hospital, the teacher asked if anyone had a cardiac baby who had the Norwood surgery... when we said yes, she gave us that look like, "oh, so you guys really need to know this." And then later she was telling one of the other moms that a baby's heart doesn't usually just stop, and I couldn't help blurting out, "well, ours already did!" And she gave me that look again, "well, yeah, you guys have a hypoplast, that's different." So I get the shakes again for a minute and then move on... right, new normal. We don't know if there will be long-term issues with the cardiac arrest and brain bleed. We do know her left ventricle will never work. She'll always live with half a heart. The next 6 months while we go through this "interstage" period, she is at risk for sudden death. We have little cards that we're supposed to carry in our wallets that say that and they also explain to emergency personnel that her oxygen saturation should be between 75 and 85% so they don't treat her like a normal kid and over-oxygenate her which could cause heart failure. We don't know if she'll be able to have babies, we don't know if her half a heart will start to get tired in her 20's or 30's... But now I totally get why when I tried to ask the cardiologist some of those long-term prognosis questions at one of the fetal echo appointments during pregnancy, he looked at me with compassion and said, "We've got a lot to get through before that. Let's take it one step at a time." So for now we have to figure out her care at home with the other kids in the mix. Nick was home today and my sister came to help and this would really be no problem if there were 3 adults here at all times!! I have felt inadequate before in my life, but this is a new level of inadequacy. Until her 2nd surgery we have to feed her every 3 hours around the clock and for now we have to try feeding her with a bottle for 10-20 minutes and then finish the rest of the feeding by tube. And she has meds 3 times a day. And I have to pump. And we have to weigh her and check her oxygen saturation levels and fill out logs to report back to her care team at U of M. We have visiting nurses coming, seemingly endless phone calls with the insurance people and appointments back in Ann Arbor every week for a time. And there are 6 other kids that would really like some attention after their parents were gone for 4 weeks! And a couple of them have some lingering attachment issues and did I mention their parents left them for 4 weeks?! And then all of a sudden she seems to be breathing too fast and she gets a little dusky and my fears surface again and I forget what I was supposed to be doing, and I start to feel lightheaded and shaky and my mind slips back to that Friday... BUT! He is good. We know on a deeper level that the Lord has numbered all our days and that He is so good. On the worst day when it felt like everything in the room turned to jello and I couldn't think or stand up, the Lord was still faithful. The anchor held. And I know without a shadow of a doubt that it always will, no matter what happens with our sweet girl or with anything else for that matter. Nick has said to me an endless number of times in the past 4 weeks, "we're going to be ok." And I know it's true when I remember to keep my eyes fixed on the source of my secure and eternal joy. Praise the Lord that he allowed me to see that and long for it in a new way.
Hebrews 6:18b-20, "We who have fled for refuge might have strong encouragement to hold fast to the hope set before us. We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain, where Jesus has gone as a forerunner on our behalf, having become a high priest forever after the order of Melchizedek."
"So the anchor of our soul is the absolutely certain hope of eternal joy with God which Jesus has secured by his priestly work in the holy of holies. ...The anchor is bound in heaven and secured in my soul. The rope does not dangle in my face and lie limp across the deck of my soul. God, by his Holy Spirit, takes up the rope and ties it to the little ship of my weak and vulnerable soul with unbreakable, sovereign covenant love. This was promised in the new covenant and purchased by the blood of Jesus." -Piper
Wednesday, February 12, 2014
Trust
I've been thinking a lot about TRUST. It really is a puzzling thing to consider. What do you trust? Why do you trust? Do you tend to trust unless something proves untrustworthy, or do you only place your trust once the thing proves itself to be true? And of course, it all depends on the thing or the one whom we are considering.
Take this chair I'm sitting in. I didn't really consider it before I sat down. A quick glance and my mind knew it was a chair. I trusted it would hold me up without turning it over and inspecting it's nuts and bolts. In that same glance I could see it was one of those reclining chairs and appeared soft, so I trusted it would be comfortable. More comfortable than the wooden chair that we tend to just put our stuff on or maybe a visitor who won't stay long and can sit there and be uncomfortable for 20-30 minutes (he's probably a bit uncomfortable anyway visiting people like us who are emotionally fragile, exhausted from doing nothing for 3 weeks, and hearing those alarms on all the monitors that we've learned to ignore).
But what about Louisa. I trusted her going in to this. There were many times Carissa and I talked about this during the pregnancy. She would say things like, "what if we end up staying there for months?" Or, "what if she ends up one of those kids who needs a heart transplant, what if she can't get off bypass, what if she dies during the surgery, what if we never get to hold her, what if the other kids never get to hold her -- the little girls just say over and over how excited they are to hold her, what if, what if, what if...?" Usually, I would say something like, "Yeah, her heart is a total disaster and she has to have at least 3 major surgeries, but everything else looks good. The echos look good. There's no reason to assume she won't be a routine case for them and we'll be home in the 2-3 weeks they said it would take if all goes well." So, we planned that way. I trusted her then.
Last Saturday, we were there for rounds in the PCTU. Rounds are an interesting thing there. Many times I looked around that huge room we were in. I think there are 8 beds in that part of the PCTU. The Bay area is reserved for the sickest kids, often the ones immediately post-op. We'd see kids coming back from surgery at all hours of the day or night. I wondered how on earth they could keep track of all these kids safely. All the meds, all the rhythms, all the vent settings, all the chest tubes, the infections, the blood gases, and all the things they were doing that we didn't even know they were doing. A bunch of men and women with all their personal problems and flaws and limitations keeping the sickest little ones in the world alive. It's crazy.
So rounds every morning is a herd of doctors, nurses, dieticians, fellows, residents, etc. They have a systematic way of reviewing all the issues for each patient. On Saturday, the doctor who was on-call said to us, "You know, there really isn't a medical indication to keep Louisa in the ICU. We just don't trust her." We agreed, "We don't trust her either!" So, we all decided to keep her there for the rest of the weekend. But it got me thinking more about trust. It also got me thinking about the other thing the doctors and nurses keep saying about Louisa and her course, "She's in charge here, she's calling the shots." I know what they're saying. They're saying that at this point, we just react to what she tells us about how she's doing. But it's funny, she's a 3 week old infant. She's never made a decision in her life. I'm not even sure she "thinks" let alone "calls the shots". So, who is calling the shots? Is it really just a variety of cells and physiologic processes all reacting to her single ventricle and the surgery they did to correct her problem? Is it really all cause and effect? Clearly, there is some of that. Her heart rhythm is goofed up, they check her potassium, it's very low, they give her potassium in her IV, the heart rhythm goes back to normal. It seems simple. But aren't there millions, perhaps billions, actually an infinite number of variables going on outside of our control that we have to "trust"?
What makes potassium potassium? Who is keeping the right number of protons and neutrons in the nucleus of the potassium molecule to keep it potassium? And how can we be sure that the potassium they measured is really accurate? And if normal is 3.5-4.5 then what if the level is 3.47989? Is that close enough? We could go on and on. Someone must be behind the scenes doing all this. Ultimately, we have to put our trust in something. We can trust in the doctors and the nurses and the pharmacists and the medicines, but ultimately, we have to trust that they are interpreting accurate data and making the right decisions to make our baby well. I like what Dr. Z keeps saying, "We can talk about all the statistics, but there's only one Louisa." But again, Louisa is 3 weeks old. She's not deciding when to dump her potassium or when to breath, or when to go into cardiac arrest, or when to push her own chest tube out, or when to desat. Someone is. It's God. I'm sure of it. And we've prayed and our church and families have prayed and He's seen fit to act in our favor and grant our requests. He restarts the heart, he fixes the potassium, he stops the pleural effusion, he tells the heart again to beat.
But, can I trust Him? Do I trust Him? Or do I just trust my feelings about Him? Or my idea of Him? If He's God, do I have the luxury of trusting only what I want to trust Him for, and trust myself for the rest? No. I trust Him for all of it -- all He says and does. I should find out how He communicates with His people and learn all there is to learn about Him. He is trustworthy. He has not failed us yet. And He actually commands me to trust Him. It isn't really an option. So, every day we have to proclaim that we trust Him, and tell ourselves again that we trust him. We trust Him because He is the Truth.
"And those who know your name put their trust in you, for you, O Lord, have not forsaken those who seek you." Psalm 9:10.
"The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him." Psalm 28:7.
"Delight yourself in the Lord, and he will give you the desires of your heart. Commit your way to the Lord; trust in him, and he will act. He will bring forth your righteousness as the light, and your justice as the noonday." Psalm 37:4-6.
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and He will make your path straight." Proverbs 3:5-6.
"He is not afraid of bad news; his heart is firm, trusting in the Lord." Psalm 112:7 (I love that one right now!).
So, last night when she began to choke and gag after her feeding and her oxygen saturation dropped to 39 and we yelled for the nurses and people came running and they placed her grey and lifeless looking body in the crib and we watched her throw up and called the on-call doctor who found her chest tube had worked itself out and then watched the numbers come back up while they ran all their tests and got her back in a stable place again we had to keep trusting. Were we going to say goodbye right there at that moment? Would she take another breath? Was her fragile heart going to stop? We didn't know. But we did know all the above verses. We knew that no matter what happened, the Lord is good. We can trust Him. We can trust that He delights in giving us the desires of our hearts. He doesn't forsake us. He's our strength and our shield and we are not afraid of bad news. Even if he calls us to say goodbye to Louisa today, our hearts are firm. They'd be broken, but firm. And only the Lord can do that -- make broken hearts firm. Praise the Lord.
And a song called "Trust" from an album that has been a great encouragement to us -- written by Matt Hammitt from Sanctus Real. Amazing album. Louisa has the same heart defect as their little guy, Bowen. Matt wrote the album, "Every Falling Tear", for their time in the hospital after Bowen was born. The album has helped us a ton through some of the darkness.
Take this chair I'm sitting in. I didn't really consider it before I sat down. A quick glance and my mind knew it was a chair. I trusted it would hold me up without turning it over and inspecting it's nuts and bolts. In that same glance I could see it was one of those reclining chairs and appeared soft, so I trusted it would be comfortable. More comfortable than the wooden chair that we tend to just put our stuff on or maybe a visitor who won't stay long and can sit there and be uncomfortable for 20-30 minutes (he's probably a bit uncomfortable anyway visiting people like us who are emotionally fragile, exhausted from doing nothing for 3 weeks, and hearing those alarms on all the monitors that we've learned to ignore).
But what about Louisa. I trusted her going in to this. There were many times Carissa and I talked about this during the pregnancy. She would say things like, "what if we end up staying there for months?" Or, "what if she ends up one of those kids who needs a heart transplant, what if she can't get off bypass, what if she dies during the surgery, what if we never get to hold her, what if the other kids never get to hold her -- the little girls just say over and over how excited they are to hold her, what if, what if, what if...?" Usually, I would say something like, "Yeah, her heart is a total disaster and she has to have at least 3 major surgeries, but everything else looks good. The echos look good. There's no reason to assume she won't be a routine case for them and we'll be home in the 2-3 weeks they said it would take if all goes well." So, we planned that way. I trusted her then.
Last Saturday, we were there for rounds in the PCTU. Rounds are an interesting thing there. Many times I looked around that huge room we were in. I think there are 8 beds in that part of the PCTU. The Bay area is reserved for the sickest kids, often the ones immediately post-op. We'd see kids coming back from surgery at all hours of the day or night. I wondered how on earth they could keep track of all these kids safely. All the meds, all the rhythms, all the vent settings, all the chest tubes, the infections, the blood gases, and all the things they were doing that we didn't even know they were doing. A bunch of men and women with all their personal problems and flaws and limitations keeping the sickest little ones in the world alive. It's crazy.
So rounds every morning is a herd of doctors, nurses, dieticians, fellows, residents, etc. They have a systematic way of reviewing all the issues for each patient. On Saturday, the doctor who was on-call said to us, "You know, there really isn't a medical indication to keep Louisa in the ICU. We just don't trust her." We agreed, "We don't trust her either!" So, we all decided to keep her there for the rest of the weekend. But it got me thinking more about trust. It also got me thinking about the other thing the doctors and nurses keep saying about Louisa and her course, "She's in charge here, she's calling the shots." I know what they're saying. They're saying that at this point, we just react to what she tells us about how she's doing. But it's funny, she's a 3 week old infant. She's never made a decision in her life. I'm not even sure she "thinks" let alone "calls the shots". So, who is calling the shots? Is it really just a variety of cells and physiologic processes all reacting to her single ventricle and the surgery they did to correct her problem? Is it really all cause and effect? Clearly, there is some of that. Her heart rhythm is goofed up, they check her potassium, it's very low, they give her potassium in her IV, the heart rhythm goes back to normal. It seems simple. But aren't there millions, perhaps billions, actually an infinite number of variables going on outside of our control that we have to "trust"?
What makes potassium potassium? Who is keeping the right number of protons and neutrons in the nucleus of the potassium molecule to keep it potassium? And how can we be sure that the potassium they measured is really accurate? And if normal is 3.5-4.5 then what if the level is 3.47989? Is that close enough? We could go on and on. Someone must be behind the scenes doing all this. Ultimately, we have to put our trust in something. We can trust in the doctors and the nurses and the pharmacists and the medicines, but ultimately, we have to trust that they are interpreting accurate data and making the right decisions to make our baby well. I like what Dr. Z keeps saying, "We can talk about all the statistics, but there's only one Louisa." But again, Louisa is 3 weeks old. She's not deciding when to dump her potassium or when to breath, or when to go into cardiac arrest, or when to push her own chest tube out, or when to desat. Someone is. It's God. I'm sure of it. And we've prayed and our church and families have prayed and He's seen fit to act in our favor and grant our requests. He restarts the heart, he fixes the potassium, he stops the pleural effusion, he tells the heart again to beat.
But, can I trust Him? Do I trust Him? Or do I just trust my feelings about Him? Or my idea of Him? If He's God, do I have the luxury of trusting only what I want to trust Him for, and trust myself for the rest? No. I trust Him for all of it -- all He says and does. I should find out how He communicates with His people and learn all there is to learn about Him. He is trustworthy. He has not failed us yet. And He actually commands me to trust Him. It isn't really an option. So, every day we have to proclaim that we trust Him, and tell ourselves again that we trust him. We trust Him because He is the Truth.
"And those who know your name put their trust in you, for you, O Lord, have not forsaken those who seek you." Psalm 9:10.
"The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him." Psalm 28:7.
"Delight yourself in the Lord, and he will give you the desires of your heart. Commit your way to the Lord; trust in him, and he will act. He will bring forth your righteousness as the light, and your justice as the noonday." Psalm 37:4-6.
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and He will make your path straight." Proverbs 3:5-6.
"He is not afraid of bad news; his heart is firm, trusting in the Lord." Psalm 112:7 (I love that one right now!).
So, last night when she began to choke and gag after her feeding and her oxygen saturation dropped to 39 and we yelled for the nurses and people came running and they placed her grey and lifeless looking body in the crib and we watched her throw up and called the on-call doctor who found her chest tube had worked itself out and then watched the numbers come back up while they ran all their tests and got her back in a stable place again we had to keep trusting. Were we going to say goodbye right there at that moment? Would she take another breath? Was her fragile heart going to stop? We didn't know. But we did know all the above verses. We knew that no matter what happened, the Lord is good. We can trust Him. We can trust that He delights in giving us the desires of our hearts. He doesn't forsake us. He's our strength and our shield and we are not afraid of bad news. Even if he calls us to say goodbye to Louisa today, our hearts are firm. They'd be broken, but firm. And only the Lord can do that -- make broken hearts firm. Praise the Lord.
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| Our view this morning. Carissa said, "A reminder there is still beauty in the brokenness." |
Monday, February 10, 2014
Moving Day!
Today was moving day! Louisa got the boot out of the ICU to the moderate care unit. And moderate care means mom and dad are doing a lot of care! This is fun, a little overwhelming, but fun. Feels like we're actually being her parents. She still has the chest tube in and that is her biggest rate limiting step in coming home. We have to use this enfaport formula and our job today is to start bolus feeding her. That means we have to give her an hours worth of food all at once every hour for 8 hours through her tube. And since we are novices at tube feeding, it takes us a solid 15 minutes to get it ready, 15 minutes to go in and clean it up. That leaves 30 minutes of rest before doing it all over again! But the next hour we get to start doubling the dose every 2 hours! This is exciting! Ahh, the things that get you going now.
So, we made a big step forward leaving the ICU this morning. Keep praying for the chest tube to come out soon and then we just have to work our way through our checklist to getting out of here. The nurse practitioner said MAYBE early next week? Crap, Carissa is crying again... Back soon.
Ok, so those tears were just feeling overwhelmed. Each of these big changes is overwhelming. You want them and look forward to them, and then when they come, panic sets in that we're not ready. We want to take her home so bad, but then again, we're terrified to leave this place. She just spit up for the first time. Is that ok? Can she spit up with the NG tube? She's looking a little dusky. Is that ok dusky or not ok dusky? We can always check the monitor here and see her heart rate, respiratory rate and oxygen saturation. But, there's no monitor at home. Maybe we shouldn't go home. And there's the other 6 kids. They're amazing and we love them, but how are we going to take care of her and them at the same time? Right now she needs a tube feed every hour. How is this going to work in a home school with temper tantrums and soccer practice and dinner to make and lunch to clean up and no one has had a bath for 10 days!
So, once and a while, you just have to cry a little bit. But it beats the tears we were crying 2.5 weeks ago when we were pleading for her life. How quickly we begin to despair again. I know, it's ok to despair a bit in this situation. Going home will be more than we can handle. And the Lord will provide. He gives life and He gives grace to the weak. We will be weak. Perhaps the weakest we'll ever be in this life. But we look forward to the promised land. No more tears -- tears of desperation, tears of fear, tears of living beyond our capacities, tears of hurting, tears of all varieties. No more tears.
Here's some more pics from the last few days. And I'll share the moment I'm currently having with this little angel on my lap while I type. Isn't she a beauty?
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| This was her wean from the CPAP to the high flow oxygen a few days ago. She only has the yellow NG tube now, the oxygen is done and the tube in her mouth is out now too. |
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| This was our sight one morning last week. Beautiful greeting. |
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| This was our little nook behind Louisa in the PCTU. Many hours spent here! |
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| Amazing nurses Darlene and Jen giving some love to "her" baby. |
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| Moving up to the 11th floor! So long PCTU team, thanks for saving Louisa's life. |
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| Carissa plays nurse and does first tube feed and medication admin. Should become old hat pretty quick since we're doing this hourly for the first 8 hours! |
Tuesday, February 4, 2014
I held my baby today.
A week ago I received the greatest birthday present ever -- my Louisa got off ECMO. It was a long 7 days of "maybe tomorrow"s. But the maybe tomorrow turned into 2 PM today for removing the ventilator tube. It was a beautiful moment. Her raspy little voice barely eking out a squeak of triumph! It's been 6 hours since, which is the first milestone to reach. They'll be rechecking her blood gasses to see if she's handing things ok. We hope and pray that she'll make it to the 24-hour mark and things will settle right down.
At 6 PM things were stable enough for us to get our arms around her again. It had been 12.5 days since we last held her. I know others have had to wait longer, I don't think I could have waited another second. Thanks for praying so hard for Louisa. I really do feel that what you see below is because the Lord heard your prayers and because he loves to give good gifts to his children, he answered them. If you're a prayer warrior, thanks, keep them coming. If you've wondered whether God exists in the middle of this mess of a world we all live in, I hope this encourages you to consider that He is here and it makes perfect sense to Him. You can trust Him. And maybe you've struggled to remember if the God you serve is mighty and present and fully capable of all things. Maybe you've felt He was distant. I know I've struggled with these thoughts in the last 2 weeks. I hope what you see below will remind you of the truth you know and profess. I am convinced that this is nothing less than our Heavenly Father taking good pleasure in answering the prayers of his people on behalf of our darling Louisa. I can never say thank you enough. I love her. She is so beautiful. I hope you can enjoy her too.
At 6 PM things were stable enough for us to get our arms around her again. It had been 12.5 days since we last held her. I know others have had to wait longer, I don't think I could have waited another second. Thanks for praying so hard for Louisa. I really do feel that what you see below is because the Lord heard your prayers and because he loves to give good gifts to his children, he answered them. If you're a prayer warrior, thanks, keep them coming. If you've wondered whether God exists in the middle of this mess of a world we all live in, I hope this encourages you to consider that He is here and it makes perfect sense to Him. You can trust Him. And maybe you've struggled to remember if the God you serve is mighty and present and fully capable of all things. Maybe you've felt He was distant. I know I've struggled with these thoughts in the last 2 weeks. I hope what you see below will remind you of the truth you know and profess. I am convinced that this is nothing less than our Heavenly Father taking good pleasure in answering the prayers of his people on behalf of our darling Louisa. I can never say thank you enough. I love her. She is so beautiful. I hope you can enjoy her too.
Monday, February 3, 2014
Louisa, rocks, and chyle -- an update
This was the email I just sent our church prayer chain. I thought I'd put it up here to ask anyone else who's been following Louisa's journey to continue to pray for her. She is a fighter, but man, this is looking like it's going to be a long fight. Please entreat the Lord for her.
*****
Please pray again for Louisa this morning. She's had a rougher day so far. They did an echocardiogram to see if they could determine why she's struggling to get off the vent. The good news was that her heart function, valves, and shunt looked pretty good. So it doesn't appear to be the heart that's causing the trouble. They also found fluid around the lungs (pleural effusions) on both sides. This is good because they think this is likely why she hasn't been able to expand her lungs all the way, but it's a bit of a bummer because they're going to have to place 2 new chest tubes to drain the fluid. They are doing that as I type this. The other question is what kind of fluid is it? We are hoping (and please pray) that it is just normal, post-operative and post-ECMO fluid. It could also be a fluid called chyle. This is a fluid drained by the thoracic duct (part of the lymphatic system) and could have formed since she started her feeds as it has to do with lipid/fat transport. The duct could have been injured during surgery, or just blocked. If it's chyle, then they have to stop feeds for about 7 days before trying again. That could be a bigger set-back as far as our time here goes. So, we're praying for normal fluid.
She also had some electrolyte issues this morning and some rhythm problems with her heart (probably from the electrolytes). Her heart rate dropped on a few occasions and caused folks to come running. There were some scary and tense moments this morning that got our nerves aggravated. They've given her some more sedation and she's calmed down well. Hopefully with the fluid out of the lung cavity and the electrolytes balanced, she'll be breathing easier and able to come off the vent in the next couple days. Breathing on her own is still the next major hurdle she has to overcome.
And please pray again for us. We are admittedly growing weary as the days click by and the goal of getting her in our arms, our car seat, and our home seem to be creeping off into the future farther than we can see. It's getting hard to "take it a day at a time" when the future demands us to make some decisions about the other kids and work etc. As Carissa has said, home doesn't feel right unless she's there with us, but here isn't right without the rest of the family. We know the Lord transcends time and place. He is omniscient, omnipotent, and omnipresent. It's great to serve an omni-God. He will provide and sustain. And He will love to answer our and your prayers. Thank you for praying them.
Minnaars
**UPDATE**
This is like that show Unsolved Mysteries from the 80s where they'd set up the whole story and then just when you think the show is over the music would change and they'd have an "update" or it'd say "solved". That show gave me nightmares! This experience is nightmarish.
So, the nurse just called. The procedure was successful, but sadly, the fluid looked chylous. This means they have to delay her feeding at least 7 days and monitor for the fluid to stop accumulating. There's an off chance, if the fluid doesn't stop once re-feeding happens, they'll have to go back in to her chest surgically to look for a needed repair to the thoracic duct.
However, chyle or no chyle, the Lord is still the Lord. Our Psalm this morning was Psalm 114. Verses 7-8 are again a good reminder, "Tremble, O earth, at the presence of the Lord, at the presence of the God of Jacob, who turns the rock into a pool of water, the flint into a spring of water." Rocks turned into water? That's impossible. But God does that. Praise the Lord. He can stop a thoracic duct leak if He can turn rocks into water. Lord, I'm asking you to do that for my daughter.
**UPDATE #2**
Rarely, there would be an update to the update on Unsolved Mysteries.
I thought I should make sure everyone knew there is a kind of formula they are going to try that is low fat. This is good, because it will keep the "normal" digestive processes going without producing the chyle. We'll have to use this fancy formula for at least 6 weeks. It's a bit of a bummer that Carissa will have to continue to pump and store instead of pump and use. And it also means I might have to get up in the night to do bottles -- bummer, the paternal benefits of breast feeding are slipping away. Oh well. It's not like I was going to sleep anyway. I figure I'll be up all night watching her breathe with a finger on her pulse. And now, maybe the other hand holding a bottle. But, even in that scenario, we'll be home.
So, this whole deal is sort of a side story and doesn't absolutely delay the other post-op course, assuming little to no further fluid production from the chest tube. Hopefully they will commence with vent weaning tonight with extubation in another day or two. Heard that before. The Lord knows.
*****
Please pray again for Louisa this morning. She's had a rougher day so far. They did an echocardiogram to see if they could determine why she's struggling to get off the vent. The good news was that her heart function, valves, and shunt looked pretty good. So it doesn't appear to be the heart that's causing the trouble. They also found fluid around the lungs (pleural effusions) on both sides. This is good because they think this is likely why she hasn't been able to expand her lungs all the way, but it's a bit of a bummer because they're going to have to place 2 new chest tubes to drain the fluid. They are doing that as I type this. The other question is what kind of fluid is it? We are hoping (and please pray) that it is just normal, post-operative and post-ECMO fluid. It could also be a fluid called chyle. This is a fluid drained by the thoracic duct (part of the lymphatic system) and could have formed since she started her feeds as it has to do with lipid/fat transport. The duct could have been injured during surgery, or just blocked. If it's chyle, then they have to stop feeds for about 7 days before trying again. That could be a bigger set-back as far as our time here goes. So, we're praying for normal fluid.
She also had some electrolyte issues this morning and some rhythm problems with her heart (probably from the electrolytes). Her heart rate dropped on a few occasions and caused folks to come running. There were some scary and tense moments this morning that got our nerves aggravated. They've given her some more sedation and she's calmed down well. Hopefully with the fluid out of the lung cavity and the electrolytes balanced, she'll be breathing easier and able to come off the vent in the next couple days. Breathing on her own is still the next major hurdle she has to overcome.
And please pray again for us. We are admittedly growing weary as the days click by and the goal of getting her in our arms, our car seat, and our home seem to be creeping off into the future farther than we can see. It's getting hard to "take it a day at a time" when the future demands us to make some decisions about the other kids and work etc. As Carissa has said, home doesn't feel right unless she's there with us, but here isn't right without the rest of the family. We know the Lord transcends time and place. He is omniscient, omnipotent, and omnipresent. It's great to serve an omni-God. He will provide and sustain. And He will love to answer our and your prayers. Thank you for praying them.
Minnaars
**UPDATE**
This is like that show Unsolved Mysteries from the 80s where they'd set up the whole story and then just when you think the show is over the music would change and they'd have an "update" or it'd say "solved". That show gave me nightmares! This experience is nightmarish.
So, the nurse just called. The procedure was successful, but sadly, the fluid looked chylous. This means they have to delay her feeding at least 7 days and monitor for the fluid to stop accumulating. There's an off chance, if the fluid doesn't stop once re-feeding happens, they'll have to go back in to her chest surgically to look for a needed repair to the thoracic duct.
However, chyle or no chyle, the Lord is still the Lord. Our Psalm this morning was Psalm 114. Verses 7-8 are again a good reminder, "Tremble, O earth, at the presence of the Lord, at the presence of the God of Jacob, who turns the rock into a pool of water, the flint into a spring of water." Rocks turned into water? That's impossible. But God does that. Praise the Lord. He can stop a thoracic duct leak if He can turn rocks into water. Lord, I'm asking you to do that for my daughter.
**UPDATE #2**
Rarely, there would be an update to the update on Unsolved Mysteries.
I thought I should make sure everyone knew there is a kind of formula they are going to try that is low fat. This is good, because it will keep the "normal" digestive processes going without producing the chyle. We'll have to use this fancy formula for at least 6 weeks. It's a bit of a bummer that Carissa will have to continue to pump and store instead of pump and use. And it also means I might have to get up in the night to do bottles -- bummer, the paternal benefits of breast feeding are slipping away. Oh well. It's not like I was going to sleep anyway. I figure I'll be up all night watching her breathe with a finger on her pulse. And now, maybe the other hand holding a bottle. But, even in that scenario, we'll be home.
So, this whole deal is sort of a side story and doesn't absolutely delay the other post-op course, assuming little to no further fluid production from the chest tube. Hopefully they will commence with vent weaning tonight with extubation in another day or two. Heard that before. The Lord knows.
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