Saturday, October 31, 2009
NICU, Day 44 (The Last!!): October 31, 2009
I present to you a 1,000 words. (You'll get the rest tomorrow...)
Friday, October 30, 2009
NICU, Day 43: October 30, 2009
Oh, I might as well spill the beans...
LUKE IS COMING HOME TOMORROW!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yup. The day has finally arrived. We didn't mean to spring it on you - but we weren't for sure, for sure, until this morning at rounds. Quite honestly, after my 4am phone call to the night nurse, when I learned he had lost a little weight, I really thought we'd be there until Monday. But, when the neonatologist called my pediatrician, that tipped the scales. To quote Dr. Enders, "Send that baby home!"
Sing it sister.
So, we're bustin' out of that joint sometime tomorrow. Still. In. Shock.
He had a great day - obviously - and I have to share a few God moments with you. The first came at a completely unexpected time (don't they all?) I was nursing Luke. Thank the good Lord we finally found a position that doesn't require me to take a bottleful of hydrocodone and one that he doesn't freak out because the milk isn't coming out fast enough. I pulled up my email and read a most precious note from Sr. Maria Gemma. But, it was the prayer that she sent that caused a tear buildup.
Huh, how about that? I never, ever, thought about my cross being hand selected. Common sense, or perhaps spiritual sense, but it took this prayer to open my eyes. Luke was hand-picked by God to be our son. And this cross we bear has Luke attached. I mean, he didn't just give us heart issues, brain worries, small kidneys and an icky gut. Nope. He gave them to us in a cute, little, lovable package named Luke Timothy. How lucky are we? Our cross smiles at us and goes all milk drunk. He doesn't talk back (yet) and loves to snuggle. I may not like the ten million follow-up doctor visits we've made for the coming weeks, but I'm darn sure glad my cross is just about the cutest thing I've ever laid my eyes upon.
I was a little giddy all afternoon thinking about having Luke home. Then the torrent of emotions hit.
Tears filled my eyes as I journeyed up to the hospital for the last time tonight. It didn't really hit me until I exited I-35 and could see the Dell Children's tower in the distance. Immediately, I could feel my eyes burning. The place in which Luke has called home for far too long would be no more in a little less than 24 hours.
And again when I saw one of our favorite night nurses. She saw me carrying the carseat (just a word to the wise, when a mom comes bounding in with a carseat, home is in her baby's future) and when I shared our good news, she said, "Oh, Kathryn, that makes me want to cry." And then she promptly did.
Yep, again tonight as I nursed Luke, I held his little body and my eyes wandered around the room...
Instead of a hard steel bed to sleep in, Luke has a cozy bassinet next to our bed.
Instead of a drawer with all his clothes, they'll be neatly hung in his closet and laid in his dresser.
Instead of a phone and a password that give me access to his room, I just have to open my eyes and see him before me.
Instead of beeping monitors blaring his heartrate and respirations, I can just hold him to my chest and feel his heart beating, ever so softly.
Instead of a photo of his family, affixed to the bed, we will all surround him at night as we give out Luke kisses.
There is no greater joy. No amount of words. Not enough happy tears.
Our family will soon be - well, a family. It's time for Scott and I to head to bed, one last time, with Luke in a different zip code. Tomorrow, oh tomorrow. It will be grand.
LUKE IS COMING HOME TOMORROW!!!!!!!!!!!!!!!!!!!!!!!!!!!
Yup. The day has finally arrived. We didn't mean to spring it on you - but we weren't for sure, for sure, until this morning at rounds. Quite honestly, after my 4am phone call to the night nurse, when I learned he had lost a little weight, I really thought we'd be there until Monday. But, when the neonatologist called my pediatrician, that tipped the scales. To quote Dr. Enders, "Send that baby home!"
Sing it sister.
So, we're bustin' out of that joint sometime tomorrow. Still. In. Shock.
He had a great day - obviously - and I have to share a few God moments with you. The first came at a completely unexpected time (don't they all?) I was nursing Luke. Thank the good Lord we finally found a position that doesn't require me to take a bottleful of hydrocodone and one that he doesn't freak out because the milk isn't coming out fast enough. I pulled up my email and read a most precious note from Sr. Maria Gemma. But, it was the prayer that she sent that caused a tear buildup.
Your Cross
St. Francis de Sales
The everlasting God has
in His wisdom foreseen
from eternity the cross
that He now presents to you
as a gift from His inmost heart.
This cross He now sends you
He has considered with His all-knowing eyes,
understood with His divine mind,
tested with His wise justice,
warmed with loving arms
and weighed with His own hands
to see that it be not one inch too large
and not one ounce too heavy for you.
He has blessed it with His holy Name,
anointed it with His consolation,
taken one last glance at you
and your courage,
and then sent it to you from heaven,
a special greeting from God to you,
an alms of the all-merciful love of God.
Huh, how about that? I never, ever, thought about my cross being hand selected. Common sense, or perhaps spiritual sense, but it took this prayer to open my eyes. Luke was hand-picked by God to be our son. And this cross we bear has Luke attached. I mean, he didn't just give us heart issues, brain worries, small kidneys and an icky gut. Nope. He gave them to us in a cute, little, lovable package named Luke Timothy. How lucky are we? Our cross smiles at us and goes all milk drunk. He doesn't talk back (yet) and loves to snuggle. I may not like the ten million follow-up doctor visits we've made for the coming weeks, but I'm darn sure glad my cross is just about the cutest thing I've ever laid my eyes upon.
I was a little giddy all afternoon thinking about having Luke home. Then the torrent of emotions hit.
Tears filled my eyes as I journeyed up to the hospital for the last time tonight. It didn't really hit me until I exited I-35 and could see the Dell Children's tower in the distance. Immediately, I could feel my eyes burning. The place in which Luke has called home for far too long would be no more in a little less than 24 hours.
And again when I saw one of our favorite night nurses. She saw me carrying the carseat (just a word to the wise, when a mom comes bounding in with a carseat, home is in her baby's future) and when I shared our good news, she said, "Oh, Kathryn, that makes me want to cry." And then she promptly did.
Yep, again tonight as I nursed Luke, I held his little body and my eyes wandered around the room...
Instead of a hard steel bed to sleep in, Luke has a cozy bassinet next to our bed.
Instead of a drawer with all his clothes, they'll be neatly hung in his closet and laid in his dresser.
Instead of a phone and a password that give me access to his room, I just have to open my eyes and see him before me.
Instead of beeping monitors blaring his heartrate and respirations, I can just hold him to my chest and feel his heart beating, ever so softly.
Instead of a photo of his family, affixed to the bed, we will all surround him at night as we give out Luke kisses.
There is no greater joy. No amount of words. Not enough happy tears.
Our family will soon be - well, a family. It's time for Scott and I to head to bed, one last time, with Luke in a different zip code. Tomorrow, oh tomorrow. It will be grand.
Thursday, October 29, 2009
NICU, Day 42: October 29, 2009
Baby steps. We took lots of those today.
Yesterday, the doctors had talked about fortifying Luke's milk (adding some calories to the breastmilk that I pump to give him some additional weight) which got me worried. Some doctors think there may be a connection between fortified milk and NEC. That first week after birth, we were adding some of that fortification just before he got NEC and I had a bad feeling. Last night when we got home, I called the nurse and asked if we could hold off on doing that with his milk. She asked the neo, Dr. Michael (remember him?) during evening rounds and he agreed. Love him!
Luke and I worked extra hard today on getting him to nurse - which he did pretty well - and eating his 50cc out of the bottle when I'm not around. On the nursing front, we probably shot an 80% today. He clearly knows how to eat, he just needs to work on the patience end. Me? I need to relax. We're both a work in progress. Guess that's what happens when you have two over-achievers.
We had some special visitors this evening, the Dominican Sisters stopped by to love on him. He certainly was mesmerized by their glowing faces and it was an honor to have them there. I did have to smile at a comment one of the nurses made after they left...the talk at the nurses station was, "What's going on in Luke's room?" I guess four sisters in habits gets people talking :-) Truly, though, their presence was a beautiful reminder that we all have a vocation. None of them are easy, but they are all full of joy.
You can see the sisters' light up when they talk about teaching children. And, I've experienced joy as a mom and wife in the sacrament of marriage. But we have an equal charge - to live our faith and through that example bring people to Christ.
Know God.
Love God.
Serve God.
That's pretty the three-part secret to life.
I've talked about her here on the blog before, but St. Therese of Lisieux has been an inspiriation to me - as a wife, mother and woman. She was always known for her "little way" and I can't help but draw the parallel between her and Luke's journey. Therese is the patron saint of France, yet she didn't find a cure for cancer or rocket to the moon, she just did small things with great love. Our little Luke has allowed us to touch so many lives, and more importantly, uncover all the tiny things in our marriage and in our faith life that needed tweaking.
At tomorrow mornings' rounds we'll discuss Luke's weight gain. If he can keep gaining, then we can come home!! We're hopeful that it may be this weekend, but that's all up to Luke, his appetite and my milk supply. I'm becoming more and more anxious (I know, I know, I've read the scripture) about us coming home. Suffice it to say that will be tomorrow's post. How's that for a teaser?
Luke, here's hoping this is one of your last nights in the NICU and you will soon be keeping us up at night and not your nurses. Love you, my man, more than you will ever know.
Yesterday, the doctors had talked about fortifying Luke's milk (adding some calories to the breastmilk that I pump to give him some additional weight) which got me worried. Some doctors think there may be a connection between fortified milk and NEC. That first week after birth, we were adding some of that fortification just before he got NEC and I had a bad feeling. Last night when we got home, I called the nurse and asked if we could hold off on doing that with his milk. She asked the neo, Dr. Michael (remember him?) during evening rounds and he agreed. Love him!
Luke and I worked extra hard today on getting him to nurse - which he did pretty well - and eating his 50cc out of the bottle when I'm not around. On the nursing front, we probably shot an 80% today. He clearly knows how to eat, he just needs to work on the patience end. Me? I need to relax. We're both a work in progress. Guess that's what happens when you have two over-achievers.
We had some special visitors this evening, the Dominican Sisters stopped by to love on him. He certainly was mesmerized by their glowing faces and it was an honor to have them there. I did have to smile at a comment one of the nurses made after they left...the talk at the nurses station was, "What's going on in Luke's room?" I guess four sisters in habits gets people talking :-) Truly, though, their presence was a beautiful reminder that we all have a vocation. None of them are easy, but they are all full of joy.
You can see the sisters' light up when they talk about teaching children. And, I've experienced joy as a mom and wife in the sacrament of marriage. But we have an equal charge - to live our faith and through that example bring people to Christ.
Know God.
Love God.
Serve God.
That's pretty the three-part secret to life.
I've talked about her here on the blog before, but St. Therese of Lisieux has been an inspiriation to me - as a wife, mother and woman. She was always known for her "little way" and I can't help but draw the parallel between her and Luke's journey. Therese is the patron saint of France, yet she didn't find a cure for cancer or rocket to the moon, she just did small things with great love. Our little Luke has allowed us to touch so many lives, and more importantly, uncover all the tiny things in our marriage and in our faith life that needed tweaking.
At tomorrow mornings' rounds we'll discuss Luke's weight gain. If he can keep gaining, then we can come home!! We're hopeful that it may be this weekend, but that's all up to Luke, his appetite and my milk supply. I'm becoming more and more anxious (I know, I know, I've read the scripture) about us coming home. Suffice it to say that will be tomorrow's post. How's that for a teaser?
Luke, here's hoping this is one of your last nights in the NICU and you will soon be keeping us up at night and not your nurses. Love you, my man, more than you will ever know.
Wednesday, October 28, 2009
NICU, Day 41: October 28, 2009
Oh, the joy! We started the morning with rounds and there was a whole lotta good news shared. Luke has officially moved to "ad lib" feeding which means that when I'm there I can nurse as long and as much as I want. Yippeeeeeeeeeeeee. He's officially off surgery's docket and we're awaiting neurology's take on Luke busting out of this joint.
Guess we'll just watch and wait :-)
So, it appears, at least in this moment, that discharge may be in our foreseeable future. Although, until the nurses tell me to take the artwork off Luke's door, I won't be a true believer.
Three more great things about today (in no particular order).
#1: On the way home, I heard "I Will Survive" on the radio. Ahh yeah. You know I busted out and sang along with those lyrics. If you were on 183 - northbound / southbound, no matter - this afternoon about 2:15ish, you may have heard me.
#2: My sweet friend Shannon survived the NICU scrub down and shot some fantastico photographs of the little man. Can not WAIT to see them. He was such a happy trooper and hardly cried. Wide awake and totally into the shoot. Already a camera hog. Definitely a Whitaker.
#3: I got to nurse Luke - twice. He went all milk drunk, arm limp and smiling with milk running out of his mouth. He even did that cute baby heavy breathing with a healthy dose of angel kisses. There was a little heaven in Room 8 today.
Scott and I divided and conquered this evening. He and Will enjoyed a flag football make-up game that quite nearly got rained out again. They won 18-8. Give it up for the "W."
I went to the hospital for the nightly gig. Luke's biggest fan, Dr. Michael was there and we had a few moments to chat. I'm not sure if we'll see him again (he's on again Monday and gives us a 50/50 chance of still being there) and I wanted to share our thanks. Funny how you have it all in your mind - you know this really eloquent, poetic gratitude-filled schpiel - and it comes out, "Thanks so much...for everything." We both gave the nod of understanding. And then I watched him love on Luke for a while. It reminded me of Eric last weekend. Dr. M just stood there, patting Luke and telling him what a lucky, beautiful baby he was. Nearly made me tear up.
In a nutshell? Good day. Really, really good day. Here's hoping that we keep that trend up and can bring the Master home very soon. Sleep well big man and don't make the nurses snuggle too much.
Guess we'll just watch and wait :-)
So, it appears, at least in this moment, that discharge may be in our foreseeable future. Although, until the nurses tell me to take the artwork off Luke's door, I won't be a true believer.
Three more great things about today (in no particular order).
#1: On the way home, I heard "I Will Survive" on the radio. Ahh yeah. You know I busted out and sang along with those lyrics. If you were on 183 - northbound / southbound, no matter - this afternoon about 2:15ish, you may have heard me.
#2: My sweet friend Shannon survived the NICU scrub down and shot some fantastico photographs of the little man. Can not WAIT to see them. He was such a happy trooper and hardly cried. Wide awake and totally into the shoot. Already a camera hog. Definitely a Whitaker.
#3: I got to nurse Luke - twice. He went all milk drunk, arm limp and smiling with milk running out of his mouth. He even did that cute baby heavy breathing with a healthy dose of angel kisses. There was a little heaven in Room 8 today.
Scott and I divided and conquered this evening. He and Will enjoyed a flag football make-up game that quite nearly got rained out again. They won 18-8. Give it up for the "W."
I went to the hospital for the nightly gig. Luke's biggest fan, Dr. Michael was there and we had a few moments to chat. I'm not sure if we'll see him again (he's on again Monday and gives us a 50/50 chance of still being there) and I wanted to share our thanks. Funny how you have it all in your mind - you know this really eloquent, poetic gratitude-filled schpiel - and it comes out, "Thanks so much...for everything." We both gave the nod of understanding. And then I watched him love on Luke for a while. It reminded me of Eric last weekend. Dr. M just stood there, patting Luke and telling him what a lucky, beautiful baby he was. Nearly made me tear up.
In a nutshell? Good day. Really, really good day. Here's hoping that we keep that trend up and can bring the Master home very soon. Sleep well big man and don't make the nurses snuggle too much.
Top Ten: Things I'll Miss
Yes, there are many, MANY things I will NOT miss about the NICU, but I thought I should reflect on those that I will miss while we're still there :-)
1. The nurses. If you've seen my posts about their sweet notes, cards and hugs, you know why.
2. The camaraderie with other parents. I must say, this has been the most unexpected. You go in thinking that the experience is all about you and your family and then you realize that you just joined a much larger family. One that isn't nearly as annoying as your Uncle Lou.
3. The compassion. Really, this is from everyone up there - docs, nurses, housekeeping, you name it. They know just when to open their mouth and just when to shut it. If not, that's why God makes charge nurses to make it all go away :-)
4. The handwashing stations. Weird, right? I've become a horribly neurotic germaphobe and I'm really going to miss being able to clean my hands every five steps. Next time you come to the house don't be surprised if we make you scrub in.
5. Seeing a baby go home. There is just no greater joy. For them. Tough on those of us still there, but I know we'll join those ranks soon.
6. The uninterrupted time with Luke. I'm sure when we get home I'll get my time with him, but it will be sprinkled with, "Anna-Laura stop pulling on Clare's hair." "John Paul, stop chasing Anna-Laura." "Clare, quit putting your germy hands in Luke's face." "Will, thank you for listening."
7. The grunt work. When else can you love on your baby, dress them up all cute and then hand them over to someone else to bathe, change diapers and rock them when they're out-of-control fussy? I'm thinking I'll REALLY miss that around 2am.
8. Lunches that I don't have to fix. No more calling down to the cafeteria with my lunch order. I will soon be the lunch lady.
9. The access to answers. Anytime we have a question or a freak-out moment and need a doctor or nurses' opinion, it's just a call button away. Good thing I have that NICU number on my speed dial.
10. The quiet Masses. I don't ever get to go to Mass, without children and during the week. That has been some pretty precious, and much-needed prayer time, with the Big Man. Really going to miss that solitude.
11. (yes I can count, but I'm adding another one!) The conversations. During the night shift, there is a different mood in the NICU. Little slower, little quieter. We've had some really amazing, heartfelt chats with our neonatologists and our nurses during those hours. There's just something about a dark room, the hum of the monitors and the slower pace that allows people to open up and let you see a different side. We saw them as human beings, not just our caretakers. Absolutely precious time.
Perhaps next week I can share what I won't miss...I'm thinking that could be a top 100. I'll post the status update later this evening...this is just bonus Wednesday :-)
1. The nurses. If you've seen my posts about their sweet notes, cards and hugs, you know why.
2. The camaraderie with other parents. I must say, this has been the most unexpected. You go in thinking that the experience is all about you and your family and then you realize that you just joined a much larger family. One that isn't nearly as annoying as your Uncle Lou.
3. The compassion. Really, this is from everyone up there - docs, nurses, housekeeping, you name it. They know just when to open their mouth and just when to shut it. If not, that's why God makes charge nurses to make it all go away :-)
4. The handwashing stations. Weird, right? I've become a horribly neurotic germaphobe and I'm really going to miss being able to clean my hands every five steps. Next time you come to the house don't be surprised if we make you scrub in.
5. Seeing a baby go home. There is just no greater joy. For them. Tough on those of us still there, but I know we'll join those ranks soon.
6. The uninterrupted time with Luke. I'm sure when we get home I'll get my time with him, but it will be sprinkled with, "Anna-Laura stop pulling on Clare's hair." "John Paul, stop chasing Anna-Laura." "Clare, quit putting your germy hands in Luke's face." "Will, thank you for listening."
7. The grunt work. When else can you love on your baby, dress them up all cute and then hand them over to someone else to bathe, change diapers and rock them when they're out-of-control fussy? I'm thinking I'll REALLY miss that around 2am.
8. Lunches that I don't have to fix. No more calling down to the cafeteria with my lunch order. I will soon be the lunch lady.
9. The access to answers. Anytime we have a question or a freak-out moment and need a doctor or nurses' opinion, it's just a call button away. Good thing I have that NICU number on my speed dial.
10. The quiet Masses. I don't ever get to go to Mass, without children and during the week. That has been some pretty precious, and much-needed prayer time, with the Big Man. Really going to miss that solitude.
11. (yes I can count, but I'm adding another one!) The conversations. During the night shift, there is a different mood in the NICU. Little slower, little quieter. We've had some really amazing, heartfelt chats with our neonatologists and our nurses during those hours. There's just something about a dark room, the hum of the monitors and the slower pace that allows people to open up and let you see a different side. We saw them as human beings, not just our caretakers. Absolutely precious time.
Perhaps next week I can share what I won't miss...I'm thinking that could be a top 100. I'll post the status update later this evening...this is just bonus Wednesday :-)
Tuesday, October 27, 2009
NICU, Day 40: October 27, 2009
Forty days. Forty nights.
I never, ever, dreamed we'd be in the NICU this long. But, today we began to see a tiny pinhole of light at the end of the tunnel. Luke really made some big progress today. He's no longer the owner of a PICC line (the photo is our last one with it in!!) Hoo. Rah. In layman's terms, he's getting all of his nutrition from the milk and not an IV. So, his only cords are the oxygen, respiration and heart monitors. I think I'm in shock. For reals.
He's up to 40cc (inching closer to that 2oz. mark) at each of his feeds and he sucks it down in less than five minutes. I'm so hopeful that I can transition from the bottle to breastfeeding toward the end of the week. And, his pediatric surgeon gave him the all clear from their "nec" of the woods (sorry, I couldn't help myself). We'll soon set a date to put his bowel back together, probably in late November. I'm reminded of Dr. Pont's comment last week..."We're running out of reasons to keep you here." I like the sound of that.
We certainly have several lingering issues that will require more tests, more follow-ups, more visits and a fair share of anxiety. But, we're moving further away from 'critical' and closer to 'home.'
This afternoon, I had the chance to attend Mass at the hospital chapel. I even served as the impromptu lector and the message today couldn't have been more appropriate. The priest reflected on our faith, as it relates to the parable of the mustard seed, and reminded us that sometimes God asks us to wait. We may not always know why, but we should rest in knowing that there is purpose and sometimes through the waiting we grow in faith.
Ok, I'm no rocket scientist but that pretty much sums up the past 40 days.
10-4 God.
Have you ever watched the Olympic gymnasts in awe? I mean, how does a body stretch that far, fly that high, spin that fast, balance so precariously? Practice.
These past 40 days I think God has asked Scott and I to stretch a bit. To let go of the handle and trust that we'll grab it on the next spin. He never demanded we go along, but he sent us some great cheerleaders. I'm not sure that we'll make it to the medal stand, but at this point I don't really care. I'm hopeful that through this experience we'll be more grateful, more patient, more loving, more giving. As Kelli told me yesterday, we're not sure how Luke's story will end. I do know this.
I'm starting to become thankful for the journey. And that's not a statement I could've uttered with any kind of believability three weeks ago. Perhaps the reflection and purpose will be even greater as Luke grows older and I accumlate a few more gray hairs.
All I know is this. Our God is an awesome God. Our friends and family are pillars of strength and support. Our doctors and nurses are living, breathing angels. And I love my husband and children on an even greater level than I thought possible.
Luke, rest up my friend and enjoy the silence because momma is ready to blow this joint and bring you home!
I never, ever, dreamed we'd be in the NICU this long. But, today we began to see a tiny pinhole of light at the end of the tunnel. Luke really made some big progress today. He's no longer the owner of a PICC line (the photo is our last one with it in!!) Hoo. Rah. In layman's terms, he's getting all of his nutrition from the milk and not an IV. So, his only cords are the oxygen, respiration and heart monitors. I think I'm in shock. For reals.
He's up to 40cc (inching closer to that 2oz. mark) at each of his feeds and he sucks it down in less than five minutes. I'm so hopeful that I can transition from the bottle to breastfeeding toward the end of the week. And, his pediatric surgeon gave him the all clear from their "nec" of the woods (sorry, I couldn't help myself). We'll soon set a date to put his bowel back together, probably in late November. I'm reminded of Dr. Pont's comment last week..."We're running out of reasons to keep you here." I like the sound of that.
We certainly have several lingering issues that will require more tests, more follow-ups, more visits and a fair share of anxiety. But, we're moving further away from 'critical' and closer to 'home.'
This afternoon, I had the chance to attend Mass at the hospital chapel. I even served as the impromptu lector and the message today couldn't have been more appropriate. The priest reflected on our faith, as it relates to the parable of the mustard seed, and reminded us that sometimes God asks us to wait. We may not always know why, but we should rest in knowing that there is purpose and sometimes through the waiting we grow in faith.
Ok, I'm no rocket scientist but that pretty much sums up the past 40 days.
10-4 God.
Have you ever watched the Olympic gymnasts in awe? I mean, how does a body stretch that far, fly that high, spin that fast, balance so precariously? Practice.
These past 40 days I think God has asked Scott and I to stretch a bit. To let go of the handle and trust that we'll grab it on the next spin. He never demanded we go along, but he sent us some great cheerleaders. I'm not sure that we'll make it to the medal stand, but at this point I don't really care. I'm hopeful that through this experience we'll be more grateful, more patient, more loving, more giving. As Kelli told me yesterday, we're not sure how Luke's story will end. I do know this.
I'm starting to become thankful for the journey. And that's not a statement I could've uttered with any kind of believability three weeks ago. Perhaps the reflection and purpose will be even greater as Luke grows older and I accumlate a few more gray hairs.
All I know is this. Our God is an awesome God. Our friends and family are pillars of strength and support. Our doctors and nurses are living, breathing angels. And I love my husband and children on an even greater level than I thought possible.
Luke, rest up my friend and enjoy the silence because momma is ready to blow this joint and bring you home!
Monday, October 26, 2009
NICU, Day 39: October 26, 2009
Today was all about the therapy...and feeling the love.
It started out pretty close to normal. I dropped the boys off at school and then headed to the hospital (ok, not so normal, but go with me here). A sweet friend watched the girls for us and Scott headed to work. And this afternoon, I was able to spend it at home with the other four and then Scott and I went back up to the hospital this evening.
Luke had another fairly good day. Although, he did have an ultrasound done for the lower part of his back. He has a dimple just above his hiney and neuro wants to rule out any complications. Great, something else to worry about :-) You know, because we really didn't have enough. I did visit with the brain man today about the cysts and the story is still the same. Say it with me, "watch and wait."
We had our primary nurse today (that's what we refer to in the NICU as the nurse who takes care of your bambino when she works that day). It's extraordinarly important for consistency of care and they learn all the quirks about your baby. I big puffy heart Kristy. She's a cuddler, but she's also not afraid to push Luke (and me) a little. I dig that about her.
Seems as if the Master is having some swelling in his PICC line, so we've increased feeds a bit so we can pull the line and not worry about his intravaneous nutrition. Our hope is that we can transition him off of the IV so he gets all of his nutrition from the breastmilk. Otherwise, they'll have to pull the line and put in a peripheral IV (the regular kind) until he gets to that point on his feeds. So, I guess we'll watch and wait. Ha. Ha. Oh, if only you could hear the saracasm in those laughs.
Now for the love.
In a super weird twist of providential fate, three friends from three totally different life circles encouraged me to call a fellow NICU mom who was recently featured in the Austin American-Statesman. I figured I should call. I did and I have to say that I needed it more than I realized. Kelli immediately made me feel like I wasn't in this alone and that she really understood. Kelli, thank you. I'd like to wrap my arms around each one of you who have reached out to Scott and I...and a special hug to those that have shared your NICU stories. Your empathy and understanding has been 100% invaluable and has helped me weather those really dark moments. The kind that I don't write about here, but yet they are very real.
Many of you have sung a "you're so strong" hymn, but I want you to know that while there are moments that I feel that way, there are many that just sound like a bad country tune. I don't really have it all together. But, I'm able to keep it together because of your prayers and support. Your meals. Your phone calls. Your emails. Holy hours. Mass intentions. Grocery store runs. Underwear shopping (yes, I'm not too proud). Kid sitting. Child shuttling. Carline waiting. Gift card sending. Text messages. Facebook inbox. Shall I go on?
Tomorrow is a new day and we'll face it with confidence. Not the kind where we believe everything will be ok, because as Kelli so appropriately said, "No one knows how your story will end." But with the confidence in knowing that we have pretty darn good company along the journey.
Luke-a-bee - grow strong my little 5lb. 4oz. man. Mom will see you in the morning...
It started out pretty close to normal. I dropped the boys off at school and then headed to the hospital (ok, not so normal, but go with me here). A sweet friend watched the girls for us and Scott headed to work. And this afternoon, I was able to spend it at home with the other four and then Scott and I went back up to the hospital this evening.
Luke had another fairly good day. Although, he did have an ultrasound done for the lower part of his back. He has a dimple just above his hiney and neuro wants to rule out any complications. Great, something else to worry about :-) You know, because we really didn't have enough. I did visit with the brain man today about the cysts and the story is still the same. Say it with me, "watch and wait."
We had our primary nurse today (that's what we refer to in the NICU as the nurse who takes care of your bambino when she works that day). It's extraordinarly important for consistency of care and they learn all the quirks about your baby. I big puffy heart Kristy. She's a cuddler, but she's also not afraid to push Luke (and me) a little. I dig that about her.
Seems as if the Master is having some swelling in his PICC line, so we've increased feeds a bit so we can pull the line and not worry about his intravaneous nutrition. Our hope is that we can transition him off of the IV so he gets all of his nutrition from the breastmilk. Otherwise, they'll have to pull the line and put in a peripheral IV (the regular kind) until he gets to that point on his feeds. So, I guess we'll watch and wait. Ha. Ha. Oh, if only you could hear the saracasm in those laughs.
Now for the love.
In a super weird twist of providential fate, three friends from three totally different life circles encouraged me to call a fellow NICU mom who was recently featured in the Austin American-Statesman. I figured I should call. I did and I have to say that I needed it more than I realized. Kelli immediately made me feel like I wasn't in this alone and that she really understood. Kelli, thank you. I'd like to wrap my arms around each one of you who have reached out to Scott and I...and a special hug to those that have shared your NICU stories. Your empathy and understanding has been 100% invaluable and has helped me weather those really dark moments. The kind that I don't write about here, but yet they are very real.
Many of you have sung a "you're so strong" hymn, but I want you to know that while there are moments that I feel that way, there are many that just sound like a bad country tune. I don't really have it all together. But, I'm able to keep it together because of your prayers and support. Your meals. Your phone calls. Your emails. Holy hours. Mass intentions. Grocery store runs. Underwear shopping (yes, I'm not too proud). Kid sitting. Child shuttling. Carline waiting. Gift card sending. Text messages. Facebook inbox. Shall I go on?
Tomorrow is a new day and we'll face it with confidence. Not the kind where we believe everything will be ok, because as Kelli so appropriately said, "No one knows how your story will end." But with the confidence in knowing that we have pretty darn good company along the journey.
Luke-a-bee - grow strong my little 5lb. 4oz. man. Mom will see you in the morning...
Sunday, October 25, 2009
NICU, Day 38: October 25, 2009
I think today was the first day that I spent most of my waking hours with the other four kids. It was nice and weird and sad and surreal, all at the same time.
I spent a few hours with Luke this morning. We had a "diaper scare" at 3:30am. It wasn't bright red blood, but still cause for concern. We kept his feedings the same instead of increasing them, ordered some x-rays, put a tube down his nose to rid his belly of some air pockets and will - you knew I'd say it - watch and wait. Can I just tell you right now how much I'm really coming to hate those two words? I'll be at the hospital bright and early in the morning and we'll visit more in-depth with the neo.
As I was visiting with Luke's nurse this morning, she reminded me of something and helped bring that 'silver lining' out a bit more. She commented how sweet the uninterrupted time with Luke must be. And it got me thinking. If we were at home, he would certainly be in our presence, but there's no way I would be able to feed him, hold him for three hours solid, then feed him again. Thank you, Nicole, for that precious observation. I really needed that today.
Both ALG and JP had soccer games today and with the beautiful weather, it was great to see them play. I'm hoping that I'll be able to see Will play his flag football game on Friday.
Scott and I returned to the hospital for our evening goodnight kisses. That is, without a doubt, my favorite time of the day with Luke. We've been saying some specific prayers for him and that time together helps bring the peace in - which we so desperately need.
So, Granny has returned home and we're pinch hitting this week with an array of helpers. We have the day shift covered, but if any of you can take the 7-10pm night shift while Scott and I head up to the hospital, we would be so appreciative.
To our army of prayer warriors and helpers - thank you for helping make the most difficult weeks of our life, so filled with love and selflessness. You - yes YOU - are an inspiration to us.
Luke, sweet dreams sweet pea...
I spent a few hours with Luke this morning. We had a "diaper scare" at 3:30am. It wasn't bright red blood, but still cause for concern. We kept his feedings the same instead of increasing them, ordered some x-rays, put a tube down his nose to rid his belly of some air pockets and will - you knew I'd say it - watch and wait. Can I just tell you right now how much I'm really coming to hate those two words? I'll be at the hospital bright and early in the morning and we'll visit more in-depth with the neo.
As I was visiting with Luke's nurse this morning, she reminded me of something and helped bring that 'silver lining' out a bit more. She commented how sweet the uninterrupted time with Luke must be. And it got me thinking. If we were at home, he would certainly be in our presence, but there's no way I would be able to feed him, hold him for three hours solid, then feed him again. Thank you, Nicole, for that precious observation. I really needed that today.
Both ALG and JP had soccer games today and with the beautiful weather, it was great to see them play. I'm hoping that I'll be able to see Will play his flag football game on Friday.
Scott and I returned to the hospital for our evening goodnight kisses. That is, without a doubt, my favorite time of the day with Luke. We've been saying some specific prayers for him and that time together helps bring the peace in - which we so desperately need.
So, Granny has returned home and we're pinch hitting this week with an array of helpers. We have the day shift covered, but if any of you can take the 7-10pm night shift while Scott and I head up to the hospital, we would be so appreciative.
To our army of prayer warriors and helpers - thank you for helping make the most difficult weeks of our life, so filled with love and selflessness. You - yes YOU - are an inspiration to us.
Luke, sweet dreams sweet pea...
Saturday, October 24, 2009
NICU, Day 37: October 24, 2009
Today, the kids were able to see Luke for the first time in a month. Can't you just hear the squeals of "Wuke!!"
Granny was all smiles, too :-) Carla, if not for you we would not have been able to be so present for Luke these past few weeks. Thank you for holding down the fort at home while Scott went back to work and I went to NICU school. Go get some rest!
We reserved the sweetest and most meaningful moment of the day for Luke's oldest brother. Will was beaming with pride as he held Luke. It was the bright spot of our day. I present to you Exhibits 1-6.
Scott and I took some time to explain to Will what all the wires and cords were. You could see the wheels turning as he took it all in. My favorite quote of the morning? We asked Will why babies have a soft spot. His reply? "Well, when babies are born, their heads are mishapen so as their brain grows, the plates grow together." Where does he get this stuff??
Today was a good day, overall, for Luke. He's still tolerating the increased feeds and he now weighs a whopping 5lbs. 2oz. Can you believe it? And, to Craig, Jaime and gang - thanks for dinner. So, so good to see y'all.
Amidst all that happiness and good news today, I still can't shake this brain news that we got yesterday. I made the mistake of asking the neurosurgeon this afternoon if he thought the cysts on Luke's brain would go away without surgery. Um, yeah, that's a 'no.' Basically, brain surgery is in Luke's future when he gets a bit bigger. How big, we don't know.
But, one doctor at a time, right?
I do have to share one really, really, REALLY funny story that I totally neglected to write about yesterday. During Luke's prep for his MRI, the techs worked like bees to get him comfortable, I filled out paperwork and the nurse got all his IV tubing situated. If you've never had an MRI, the machine uses some super powerful magnets to create images of the inside of your body. To do that, you can't have any metal implants or the picture isn't accurate. As we're getting him ready for the test, I ask the tech if I can stay. She says 'sure' but reminds me to remove any metal (rings, cell phone, etc.) before I go in. Just before I step in the door (and I do mean JUST BEFORE), Luke's nurse turns to me and says, "So, Kathryn, have you ever had an MRI?" Smugly, I smile and say, "Yeah, just before my........back surgery.......I have 24 screws and 2 rods in my back!!!!" When the tech overhears this, she tells me that those are usually titanium and not a problem. But, mine are stainless steel. Problem. She just looked and me and pointed to the waiting room.
Can you imagine? If I had walked into that room, I would've flown across that floor so darn fast and stuck to the side of that MRI that my head would've spun. My goodness. Where is my brain?
Hope that gives you enough giggles to sleep well tonight. Luke, your Mom needs sleep. And lots of it.
Granny was all smiles, too :-) Carla, if not for you we would not have been able to be so present for Luke these past few weeks. Thank you for holding down the fort at home while Scott went back to work and I went to NICU school. Go get some rest!
We reserved the sweetest and most meaningful moment of the day for Luke's oldest brother. Will was beaming with pride as he held Luke. It was the bright spot of our day. I present to you Exhibits 1-6.
Scott and I took some time to explain to Will what all the wires and cords were. You could see the wheels turning as he took it all in. My favorite quote of the morning? We asked Will why babies have a soft spot. His reply? "Well, when babies are born, their heads are mishapen so as their brain grows, the plates grow together." Where does he get this stuff??
Today was a good day, overall, for Luke. He's still tolerating the increased feeds and he now weighs a whopping 5lbs. 2oz. Can you believe it? And, to Craig, Jaime and gang - thanks for dinner. So, so good to see y'all.
Amidst all that happiness and good news today, I still can't shake this brain news that we got yesterday. I made the mistake of asking the neurosurgeon this afternoon if he thought the cysts on Luke's brain would go away without surgery. Um, yeah, that's a 'no.' Basically, brain surgery is in Luke's future when he gets a bit bigger. How big, we don't know.
But, one doctor at a time, right?
I do have to share one really, really, REALLY funny story that I totally neglected to write about yesterday. During Luke's prep for his MRI, the techs worked like bees to get him comfortable, I filled out paperwork and the nurse got all his IV tubing situated. If you've never had an MRI, the machine uses some super powerful magnets to create images of the inside of your body. To do that, you can't have any metal implants or the picture isn't accurate. As we're getting him ready for the test, I ask the tech if I can stay. She says 'sure' but reminds me to remove any metal (rings, cell phone, etc.) before I go in. Just before I step in the door (and I do mean JUST BEFORE), Luke's nurse turns to me and says, "So, Kathryn, have you ever had an MRI?" Smugly, I smile and say, "Yeah, just before my........back surgery.......I have 24 screws and 2 rods in my back!!!!" When the tech overhears this, she tells me that those are usually titanium and not a problem. But, mine are stainless steel. Problem. She just looked and me and pointed to the waiting room.
Can you imagine? If I had walked into that room, I would've flown across that floor so darn fast and stuck to the side of that MRI that my head would've spun. My goodness. Where is my brain?
Hope that gives you enough giggles to sleep well tonight. Luke, your Mom needs sleep. And lots of it.
Friday, October 23, 2009
NICU, Day 36: October 23, 2009
Repeat after me..."one day at a time, one day at a time."
Rounds went great, feedings were upped again by 6cc, so we're now at 18cc every 3 hours. If...IF...Luke can keep this pace up we might be less one PICC line next week. And, the surgeon report was an "awesome" by Dr. Meyer. Can't get better than that. Dr. Pont even said, "If Luke keeps this up, we're going to run out of reasons to keep him here." I told her that I wasn't willing to even dream about next week until next week. Hmm, a little pre-cursor to the rest of our day.
Scott and I enjoyed a quick lunch away and upon my return, I asked the nurse to page Dr. Pont. We had been waiting on Luke's MRI report all morning and I was curious about the final report.
Dr. Pont knocked on the door and asked if she borrow a chair so we could visit. Um, my Mom brain wanted to scream out, "Hell no. Because good news does not need a chair. Good news is just a quick knock at the door and a thumbs up." But, I let her sit anyway because I like her so much :-)
She went on to share that Luke's "bump" on the back of his head is a collection of fluid, likely blood, and could possibly be bilateral cysts (cysts on both sides of the brain). She and I discussed the treatment options and how they might affect Luke's stay in the NICU. We paged the neurosurgeon - the infamous, endearing and personable Dr. George - and waited. Good news is that Luke's brain is intact (good thing, because mine is not) and the cyst is either part of the bone that has yet to be fused or part of the membrane that covers the brain. In Dr. George's words he's not 'freaked out.' I reassured him that I was. So again, we watch and wait to see what this bump is going to do. We will likely repeat an MRI in 3-4 weeks and reasses if it needs surgery.
Looks like we have something else to pray away.
I'll freely admit, after Dr. Pont left and I was waiting on Dr. George, I got really t-ed off at God. In fact, I even told him so. Several times. Oh, and you know I cried. A lot. Seriously God? Another major organ? In case you haven't heard we are full up - FULL UP - on crazy. At last count we're seeing six specialists - neurosurgeon, pediatric surgeon, cardiologist, nephrologist, neonatologist and urologist. Me thinks that's too many. Can I get a show of hands from those that feel the same?
And then, I looked over at Luke, sleeping soundly. The nurse came in, gave me a hug while I changed his diaper, we warmed up the milk and he ate like a champ. Then, the best part of my day slowly crept in...he fell asleep on my chest. And the two of us just chilled.
I had to wonder...
If I hold you long enough, Luke, can I love the challenges away? If I kiss you one more time, tell you I love you one more time, offer up one more prayer, shed one more tear - will that be enough?
Tonight, while Scott and Granny tended to the other four lights of our lives, I went back to the hospital and put Luke to bed. In the stillness of that room, I called Scott and we prayed for Luke's healing. We prayed for strength. Lord, this road is hard and I sometimes wish you would've chosen someone else to walk it. I could write a book (who knows, maybe someday I will!) on the roller coaster of emotions this experience has evoked.
There is no turning back, no do over, no pity party, no someone else's child. Luke Timothy, even if every organ required a specialist, we would love you the same. For this I know. We are in love and we will get you home. I promise you that.
Rounds went great, feedings were upped again by 6cc, so we're now at 18cc every 3 hours. If...IF...Luke can keep this pace up we might be less one PICC line next week. And, the surgeon report was an "awesome" by Dr. Meyer. Can't get better than that. Dr. Pont even said, "If Luke keeps this up, we're going to run out of reasons to keep him here." I told her that I wasn't willing to even dream about next week until next week. Hmm, a little pre-cursor to the rest of our day.
Scott and I enjoyed a quick lunch away and upon my return, I asked the nurse to page Dr. Pont. We had been waiting on Luke's MRI report all morning and I was curious about the final report.
Dr. Pont knocked on the door and asked if she borrow a chair so we could visit. Um, my Mom brain wanted to scream out, "Hell no. Because good news does not need a chair. Good news is just a quick knock at the door and a thumbs up." But, I let her sit anyway because I like her so much :-)
She went on to share that Luke's "bump" on the back of his head is a collection of fluid, likely blood, and could possibly be bilateral cysts (cysts on both sides of the brain). She and I discussed the treatment options and how they might affect Luke's stay in the NICU. We paged the neurosurgeon - the infamous, endearing and personable Dr. George - and waited. Good news is that Luke's brain is intact (good thing, because mine is not) and the cyst is either part of the bone that has yet to be fused or part of the membrane that covers the brain. In Dr. George's words he's not 'freaked out.' I reassured him that I was. So again, we watch and wait to see what this bump is going to do. We will likely repeat an MRI in 3-4 weeks and reasses if it needs surgery.
Looks like we have something else to pray away.
I'll freely admit, after Dr. Pont left and I was waiting on Dr. George, I got really t-ed off at God. In fact, I even told him so. Several times. Oh, and you know I cried. A lot. Seriously God? Another major organ? In case you haven't heard we are full up - FULL UP - on crazy. At last count we're seeing six specialists - neurosurgeon, pediatric surgeon, cardiologist, nephrologist, neonatologist and urologist. Me thinks that's too many. Can I get a show of hands from those that feel the same?
And then, I looked over at Luke, sleeping soundly. The nurse came in, gave me a hug while I changed his diaper, we warmed up the milk and he ate like a champ. Then, the best part of my day slowly crept in...he fell asleep on my chest. And the two of us just chilled.
I had to wonder...
If I hold you long enough, Luke, can I love the challenges away? If I kiss you one more time, tell you I love you one more time, offer up one more prayer, shed one more tear - will that be enough?
Tonight, while Scott and Granny tended to the other four lights of our lives, I went back to the hospital and put Luke to bed. In the stillness of that room, I called Scott and we prayed for Luke's healing. We prayed for strength. Lord, this road is hard and I sometimes wish you would've chosen someone else to walk it. I could write a book (who knows, maybe someday I will!) on the roller coaster of emotions this experience has evoked.
There is no turning back, no do over, no pity party, no someone else's child. Luke Timothy, even if every organ required a specialist, we would love you the same. For this I know. We are in love and we will get you home. I promise you that.
Thursday, October 22, 2009
NICU, Day 35: October 22, 2009
Today was a busy news day. Luke had a really, really, really good day. Can I hear a yee haw, complete with an arm swing and cowboy hat?
In a nutshell...his PDA closed, VSD is still there, on TPN, but no longer NPO, the NEO increased his feeds to 12cc Q3, the MRI results are pending and all that makes MOM PDH. Translation?
PDA: patent ductus arteriosus (all babies are born with this "hole" which connects the aorta and the pulmonary artery, typically is closes shortly after birth)
VSD: ventricular septal defect (this is the hole between the lower two ventricles, by all accounts the cardiologist thinks Luke's might be getting smaller and closing on its own)
TPN: total parenteral nutrition (all of Luke's nutritional requirements that he gets via his IV)
NPO: nil per os, Latin for 'nothing by mouth'
NEO: neonatologist
12cc Q3: 12cc of milk every 3 hours
MRI: magnetic resonance imaging (the big machine with the hole in the middle that uses a magnetic field to visualize the internal makings of the body)
PDH: pretty damn happy
I hope you're all still with me :-) All kidding and medical lingo aside, I was overwhelmed by the many graces that flowed upon Luke today. So many, that I actually felt a little guilty and a little stunned. I know that probably sounds weird. But after you hear about the rest of my day, you'll understand.
At rounds, we upped Luke's feeds again. I'm still cautiously happy. So far, so good. As we were wrapping up rounds, Dr. Johnson, our cardio, brought me the definitive good news that Luke's PDA had closed (which a couple of weeks ago we didn't think it would) and that his VSD was on the right pathway to closing. Honestly, I had to ask him to repeat it twice for me to believe it.
Today the NICU was a flurry of activity, anxiety and drama. We had a transport arrive from Seton Main hospital this morning and it was not good. From what I gathered it's a very tiny preemie (a 27-weeker) that needed emergency surgery. It was a dad gum convention in Room 6 this morning. Neos and nurses were running up and down the hall, EMTs were whisking the baby in and you could just feel the stress. The baby was so unstable that the surgeons performed the surgery in the NICU at the bedside.
I was so shaken, that I just sat in Luke's room, holding him, listening to our classical music, with tears filling my eyes. In those quiet moments, I prayed for that family, especially that Mom whose head was probably spinning. That was us just three weeks ago. That same surgeon operated on my little one. That same neonatoligist cared for Luke. And to think that just 24 hours prior, Room 6 was filled with so much joy because a baby was going home. To be perfectly frank, I felt guilty for hoarding all the good news. As thankful as I was that Luke was doing so well, I was angry that another family had to experience such heartache.
In the blink of an eye the NICU transforms from tears of joy to tears of sorrow.
In a heartbeat, a baby goes from stable to critical.
In a flash, a family's life changes forever.
So, we continue on the roller coaster. Seatbelts fastened realizing that as quickly as the journey goes up, the next dip could be around the corner. And when it ends is anybody's guess.
Luke, you were a trooper today. Be nice to your new buddy this evening and don't hog the nurses, ok? God bless you sweetheart. See you in the morning.
In a nutshell...his PDA closed, VSD is still there, on TPN, but no longer NPO, the NEO increased his feeds to 12cc Q3, the MRI results are pending and all that makes MOM PDH. Translation?
PDA: patent ductus arteriosus (all babies are born with this "hole" which connects the aorta and the pulmonary artery, typically is closes shortly after birth)
VSD: ventricular septal defect (this is the hole between the lower two ventricles, by all accounts the cardiologist thinks Luke's might be getting smaller and closing on its own)
TPN: total parenteral nutrition (all of Luke's nutritional requirements that he gets via his IV)
NPO: nil per os, Latin for 'nothing by mouth'
NEO: neonatologist
12cc Q3: 12cc of milk every 3 hours
MRI: magnetic resonance imaging (the big machine with the hole in the middle that uses a magnetic field to visualize the internal makings of the body)
PDH: pretty damn happy
I hope you're all still with me :-) All kidding and medical lingo aside, I was overwhelmed by the many graces that flowed upon Luke today. So many, that I actually felt a little guilty and a little stunned. I know that probably sounds weird. But after you hear about the rest of my day, you'll understand.
At rounds, we upped Luke's feeds again. I'm still cautiously happy. So far, so good. As we were wrapping up rounds, Dr. Johnson, our cardio, brought me the definitive good news that Luke's PDA had closed (which a couple of weeks ago we didn't think it would) and that his VSD was on the right pathway to closing. Honestly, I had to ask him to repeat it twice for me to believe it.
On the way to the MRI
Luke had an MRI today to rule out the large "bump" on his head. Our doctor think it's just his fontanelle and that it will go away, but because of its size, we decided that doing an MRI would help rule out a multitude of issues. We do know that it's not fluid on the brain (hydrocephalus). They bundled him up in a little papoose and he slept through the whole thing.
I do have a pretty big hat tip to give out here. One of my clients, White Construction Company, served as the general contractor for the Dell Children's Medical Center. It also happens to be the company my dad works for here in Austin. Every year, they host a "We Care Classic" golf tournament and the proceeds benefit the hospital. Last year, the funds went to offset the cost of said MRI machine. Neel, if you're reading this, words escape my gratitude. Luke helped break in that precious piece of modern medicine this evening :-)
Today the NICU was a flurry of activity, anxiety and drama. We had a transport arrive from Seton Main hospital this morning and it was not good. From what I gathered it's a very tiny preemie (a 27-weeker) that needed emergency surgery. It was a dad gum convention in Room 6 this morning. Neos and nurses were running up and down the hall, EMTs were whisking the baby in and you could just feel the stress. The baby was so unstable that the surgeons performed the surgery in the NICU at the bedside.
I was so shaken, that I just sat in Luke's room, holding him, listening to our classical music, with tears filling my eyes. In those quiet moments, I prayed for that family, especially that Mom whose head was probably spinning. That was us just three weeks ago. That same surgeon operated on my little one. That same neonatoligist cared for Luke. And to think that just 24 hours prior, Room 6 was filled with so much joy because a baby was going home. To be perfectly frank, I felt guilty for hoarding all the good news. As thankful as I was that Luke was doing so well, I was angry that another family had to experience such heartache.
In the blink of an eye the NICU transforms from tears of joy to tears of sorrow.
In a heartbeat, a baby goes from stable to critical.
In a flash, a family's life changes forever.
So, we continue on the roller coaster. Seatbelts fastened realizing that as quickly as the journey goes up, the next dip could be around the corner. And when it ends is anybody's guess.
Luke, you were a trooper today. Be nice to your new buddy this evening and don't hog the nurses, ok? God bless you sweetheart. See you in the morning.
Wednesday, October 21, 2009
NICU, Day 34: October 21, 2009
Today was a really, really good day for Luke. Admittedly, I'm a little scared to even type that, but in the spirit of 'living in the present' I feel like we should celebrate the small victories.
Luke has tolerated his small feeds very well the last couple of days, so with the blessing of our neo and the surgeon, we upped them to 6cc every 3 hours. Luke is such an overachiever. Totally don't know which side of the gene pool that's from...
The cardiologist also dropped by and we chatted for about a half hour. He was 'quote' very encouraged 'unquote' with what he heard. He says the murmur is getting louder and at a higher pitch - both indicators that the VSD may be getting smaller. He couldn't hear the PDA. Tomorrow's echo (ultrasound for the heart) will give us a better picture of both. Can I just say I really like Dr. Johnson? We chatted about all things Catholic and even shared a little of our faith along the way. I so dig being in a Catholic hospital.
Some of you have been encouraged - as are we - about Luke's feeding progress. But, I feel like I should clarify just what it is we need him and that super gut of his, to do. Luke's problem has never been the "suck, swallow, breathe" scenario that plagues many preemies in the NICU. Rather, his challenge is that icky NEC. If we advance feeds too fast, we can overwhelm his gut and cause the NEC to come back, his gut could develop strictures (which is the intestine developing scar tissue and not letting food through which would cause vomiting) or it could be overwhelmed and not process the food and "dump" everything prematurely into his ostomy bag. All are real obstacles. Right now, he's at 6cc every 3 hours - our goal is 50cc every 3 hours.
Yeah, long way to go folks, long way to go.
So, when I say we're cautiously happy, I have emphasis on both those words. We take a deep breath every time he eats hoping and praying for a good outcome. It is an excruciating game. Watch. Wait. Watch. Wait. With a healthy dose of prayer :-)
I had the rare chance to enjoy lunch with a friend AND my cute daughter! She had a playdate and the four of us gathered for some good eats. Karen, lots of kudos for making it such a nice lunch hour.
And now for your daily reflection :-)
I've had the sweet gig of feeding Luke at 2 and then snuggling in the really uncomfortable chair in his room for a catnap. The chair is a reminder that we ain't home yet. But the snuggling - oh the snuggling - with his sweet little head on my chest, making the cute lips and breathing the tender baby breaths is my heaven every afternoon. For just a moment I feel like a normal mom, cuddling with her newborn.
I forget about feeling robbed of precious time with him.
I forget about the longing to go home.
I forget that he is hooked up to a million tubes, monitors and medicines and just pat his little back.
I forget that his first month of life feels so sterile.
I forget that seeing a happy pregnant mom reminds me of what we didn't experience this time around.
And then I remember that every other mom in that hallway feels the exact same way. God bless Evangeline's mom tonight as they venture home for the first time. Adieu Room 6 - another baby will take her place. But today I am hopeful that Room 8 won't be our home forever.
God bless you Luke. Seeing you is the highlight of my day.
Luke has tolerated his small feeds very well the last couple of days, so with the blessing of our neo and the surgeon, we upped them to 6cc every 3 hours. Luke is such an overachiever. Totally don't know which side of the gene pool that's from...
The cardiologist also dropped by and we chatted for about a half hour. He was 'quote' very encouraged 'unquote' with what he heard. He says the murmur is getting louder and at a higher pitch - both indicators that the VSD may be getting smaller. He couldn't hear the PDA. Tomorrow's echo (ultrasound for the heart) will give us a better picture of both. Can I just say I really like Dr. Johnson? We chatted about all things Catholic and even shared a little of our faith along the way. I so dig being in a Catholic hospital.
Some of you have been encouraged - as are we - about Luke's feeding progress. But, I feel like I should clarify just what it is we need him and that super gut of his, to do. Luke's problem has never been the "suck, swallow, breathe" scenario that plagues many preemies in the NICU. Rather, his challenge is that icky NEC. If we advance feeds too fast, we can overwhelm his gut and cause the NEC to come back, his gut could develop strictures (which is the intestine developing scar tissue and not letting food through which would cause vomiting) or it could be overwhelmed and not process the food and "dump" everything prematurely into his ostomy bag. All are real obstacles. Right now, he's at 6cc every 3 hours - our goal is 50cc every 3 hours.
Yeah, long way to go folks, long way to go.
So, when I say we're cautiously happy, I have emphasis on both those words. We take a deep breath every time he eats hoping and praying for a good outcome. It is an excruciating game. Watch. Wait. Watch. Wait. With a healthy dose of prayer :-)
I had the rare chance to enjoy lunch with a friend AND my cute daughter! She had a playdate and the four of us gathered for some good eats. Karen, lots of kudos for making it such a nice lunch hour.
And now for your daily reflection :-)
I've had the sweet gig of feeding Luke at 2 and then snuggling in the really uncomfortable chair in his room for a catnap. The chair is a reminder that we ain't home yet. But the snuggling - oh the snuggling - with his sweet little head on my chest, making the cute lips and breathing the tender baby breaths is my heaven every afternoon. For just a moment I feel like a normal mom, cuddling with her newborn.
I forget about feeling robbed of precious time with him.
I forget about the longing to go home.
I forget that he is hooked up to a million tubes, monitors and medicines and just pat his little back.
I forget that his first month of life feels so sterile.
I forget that seeing a happy pregnant mom reminds me of what we didn't experience this time around.
And then I remember that every other mom in that hallway feels the exact same way. God bless Evangeline's mom tonight as they venture home for the first time. Adieu Room 6 - another baby will take her place. But today I am hopeful that Room 8 won't be our home forever.
God bless you Luke. Seeing you is the highlight of my day.
Tuesday, October 20, 2009
NICU, Day 33: October 20, 2009
I promised pictoral bliss yesterday, I delivered today...
I know - how cute is that?? Just in case you can't read it, it says,
Happy Birthday Daddy
Love, Luke
10/19/09
If I could get these feet out of here, I'd run right home to you.
( Reason #95 that we have really fabulous nurses. This was all their idea.)
Today was a pretty good day. Luke tolerated all his feeds well, so we may keep the amount the same, but increase the frequency tomorrow. His white blood cell count continues to go down and he just might buy himself a lab holiday if it's below 18 tomorrow. I enjoyed some nuzzling time with him this afternoon. We both took a catnap and I so enjoyed the one-on-one time with him.
Tomorrow is a new day and we're cautiously happy about his progress :-)
I had the chance to finally meet the mom of our next door neighbor in Room 7. Being in the NICU 33 days there is one thing I've learned - every story is different but the circumstances don't make the stay any better or worse. Bryce and his family have been in the NICU 4.5 months. As his mom shared their "how we landed a first-class ticket at Dell" story with me, I teared up. Actually, I'm pretty sure we both did. And I had known her less than five minutes. While this is a club I never wanted to join, I joined a walk with some pretty amazing women, with great faith, great humor and great humility.
This morning I also got an unexpected phone call from a mom that the NICU connected me with. Joan's son, a 26-weeker, was in the NICU for 4.5 months. I can't even begin to tell you how comforting it was to talk with another mom who had walked the path before me. There is great peace and validation in knowing that another mom feels the same roller coaster of emotions that you do. Joan, a million thanks. When we get a little farther down the path, know I'll be calling you for more advice :-)
So, that's today. All in all - eventful - but in a rockin' kind of way.
Luke, our little rockstar, keep it up my man. You have an audience waiting to hear from you tomorrow. See you in the morning buddy...
I had the chance to finally meet the mom of our next door neighbor in Room 7. Being in the NICU 33 days there is one thing I've learned - every story is different but the circumstances don't make the stay any better or worse. Bryce and his family have been in the NICU 4.5 months. As his mom shared their "how we landed a first-class ticket at Dell" story with me, I teared up. Actually, I'm pretty sure we both did. And I had known her less than five minutes. While this is a club I never wanted to join, I joined a walk with some pretty amazing women, with great faith, great humor and great humility.
This morning I also got an unexpected phone call from a mom that the NICU connected me with. Joan's son, a 26-weeker, was in the NICU for 4.5 months. I can't even begin to tell you how comforting it was to talk with another mom who had walked the path before me. There is great peace and validation in knowing that another mom feels the same roller coaster of emotions that you do. Joan, a million thanks. When we get a little farther down the path, know I'll be calling you for more advice :-)
So, that's today. All in all - eventful - but in a rockin' kind of way.
Luke, our little rockstar, keep it up my man. You have an audience waiting to hear from you tomorrow. See you in the morning buddy...
Monday, October 19, 2009
NICU, Day 32: October 19, 2009
By most accounts, today was a good day for Luke, a good day for Scott and a semi-good day for me. First, we'll start with the boys.
Luke started feeds today!!!!!!!!!!!!!!! Granted it was only 1/2 teaspoon every four hours, but he tolerated them so much better than last Monday. Now we watch, wait and advance feeds incredibly slowly. The doctors told us it would take at least 10 days before Luke would be at full feeds...and as with most things Luke we know it will take longer. We're trying to focus on the 'one day at a time' philosophy rather than dreaming about day 10. That's what we call 'wishful thinking' in the NICU. We were blessed with Nurse Beth today - she is truly one of our NICU angels. I think Luke might have a crush on her. He cries just so she'll hold him when I'm not there. What a ladies man.
Scott had a good birthday. He says Luke eating was his best present. When he arrived at the hospital this afternoon Beth and I were proud to show off his new birthday card. I need to scan it in because writing about it won't do it justice. Sorry for the cliffhanger, but you'll have to wait until tomorrow for that pictoral bliss.
Me? Well I was actually doing quite well today. I've learned that's how things roll in the NICU. You can be singing the, "I can totally do this" song and then wham-o. You read something, someone sends you an email, you kiss the forehead of your sweet baby, anything really and then you hit the proverbial wall. Mine kind of came in waves today.
A high school friend of mine who could write a book on crosses God gives you, wrote me such a kind note. I was really humbled. I mean, he IS faith, but in a refreshingly honest, real sortof way. Matt, thank you for understanding my prayer life these days.
My other life crept back into the day as I cleaned out closets (sorting fall and summer kids' clothes), waded through the mounting pile of medical bills (that's way fun), folded some of Luke's clothes, checked email, blah, blah, blah. I was feeling quite mom-ish and in control.
When Scott and I journeyed back to the hospital, Luke was sleeping, so I started reading a book on preemies. My eyes stumbled upon a chapter and it was like that book was saying what my mind was thinking. Teeny breakdown in Room 8 tonight.
I'll just share this with you as my parting reflection this evening.
#1: I love my husband. In the midst of my tears he made me laugh. So love that about him.
#2: Not sure where they get these nurses, but they are a taste of earthly angels. Each and every one.
#3: We all have a cross to bear. Some of you - strike that - ALL of you reading this post right now have one sitting upon your shoulders. Maybe it's a spouse who's unemployed, a husband who works too much, a child that is struggling in school, anxiety about a new baby, the death of someone you love, bills you can't pay, a spiritual bank account that's completely and totally bankrupt. Whatever it is, know this.
You will always have a cross.
Through this month-long NICU journey and the 8-month pregnancy, God has shown me that sometimes the cross is light and sometimes it's heavy. I think, really, that we just move from one to the next. Occasionally, they're not too bad, we have a community that helps us carry them, or perhaps life experience has shown us that we've carried the same cross before and we can do it again.
Other times, though, the weight seems quite nearly unbearable one minute and totally bearable the next.
I'm pretty sure I would classify this as that 'other time.' :-) Mostly, my heart is really missing Luke tonight. I think it's because he started eating today and even though that liquid gold is me in that bottle, it's not me. I'm not the one snuggling with him, stroking his head and listening to him eat. He doesn't get all milk drunk when he's done. And how do I really feel about all that?
It sucks. And, yes, that pun was totally intended.
Thankfully tomorrow is a new day, with new lessons to learn. God of all creation, be with Scott and I as we travel this road. When we are not physically present with Luke, send our guardian angels to protect and watch over him.
Luke, my little eating machine, may your feeds be just enough, your nurses kind and your sleep restful until we can kiss your peanut head in the morning. We love you...
Luke started feeds today!!!!!!!!!!!!!!! Granted it was only 1/2 teaspoon every four hours, but he tolerated them so much better than last Monday. Now we watch, wait and advance feeds incredibly slowly. The doctors told us it would take at least 10 days before Luke would be at full feeds...and as with most things Luke we know it will take longer. We're trying to focus on the 'one day at a time' philosophy rather than dreaming about day 10. That's what we call 'wishful thinking' in the NICU. We were blessed with Nurse Beth today - she is truly one of our NICU angels. I think Luke might have a crush on her. He cries just so she'll hold him when I'm not there. What a ladies man.
Scott had a good birthday. He says Luke eating was his best present. When he arrived at the hospital this afternoon Beth and I were proud to show off his new birthday card. I need to scan it in because writing about it won't do it justice. Sorry for the cliffhanger, but you'll have to wait until tomorrow for that pictoral bliss.
Me? Well I was actually doing quite well today. I've learned that's how things roll in the NICU. You can be singing the, "I can totally do this" song and then wham-o. You read something, someone sends you an email, you kiss the forehead of your sweet baby, anything really and then you hit the proverbial wall. Mine kind of came in waves today.
A high school friend of mine who could write a book on crosses God gives you, wrote me such a kind note. I was really humbled. I mean, he IS faith, but in a refreshingly honest, real sortof way. Matt, thank you for understanding my prayer life these days.
My other life crept back into the day as I cleaned out closets (sorting fall and summer kids' clothes), waded through the mounting pile of medical bills (that's way fun), folded some of Luke's clothes, checked email, blah, blah, blah. I was feeling quite mom-ish and in control.
When Scott and I journeyed back to the hospital, Luke was sleeping, so I started reading a book on preemies. My eyes stumbled upon a chapter and it was like that book was saying what my mind was thinking. Teeny breakdown in Room 8 tonight.
I'll just share this with you as my parting reflection this evening.
#1: I love my husband. In the midst of my tears he made me laugh. So love that about him.
#2: Not sure where they get these nurses, but they are a taste of earthly angels. Each and every one.
#3: We all have a cross to bear. Some of you - strike that - ALL of you reading this post right now have one sitting upon your shoulders. Maybe it's a spouse who's unemployed, a husband who works too much, a child that is struggling in school, anxiety about a new baby, the death of someone you love, bills you can't pay, a spiritual bank account that's completely and totally bankrupt. Whatever it is, know this.
You will always have a cross.
Through this month-long NICU journey and the 8-month pregnancy, God has shown me that sometimes the cross is light and sometimes it's heavy. I think, really, that we just move from one to the next. Occasionally, they're not too bad, we have a community that helps us carry them, or perhaps life experience has shown us that we've carried the same cross before and we can do it again.
Other times, though, the weight seems quite nearly unbearable one minute and totally bearable the next.
I'm pretty sure I would classify this as that 'other time.' :-) Mostly, my heart is really missing Luke tonight. I think it's because he started eating today and even though that liquid gold is me in that bottle, it's not me. I'm not the one snuggling with him, stroking his head and listening to him eat. He doesn't get all milk drunk when he's done. And how do I really feel about all that?
It sucks. And, yes, that pun was totally intended.
Thankfully tomorrow is a new day, with new lessons to learn. God of all creation, be with Scott and I as we travel this road. When we are not physically present with Luke, send our guardian angels to protect and watch over him.
Luke, my little eating machine, may your feeds be just enough, your nurses kind and your sleep restful until we can kiss your peanut head in the morning. We love you...
Happy Birthday Scott!!
Oh, to the love of my life, happy birthday.
Did you ever think this was the way we'd celebrate your birthday...holding our newest addition for the 32nd day in the NICU? Yeah, me neither.
Amidst all the nutso, I want you to know these things...
I wake up every morning and get a flutter in my heart knowing that we get to live life as husband and wife another day.
I see you playing and joking with the kids and think to myself, 'Man, our kids are so blessed to have a dad that's as fun and loving as him.'
I watch in admiration as you dive into your job with such passion. You change lives and honor God everyday.
I've come to learn that you have a love-hate relationship with the Aggies. You hate them Sunday thru Friday, but love them again on Saturday (at least until the game's over anyway). Once a yell leader, always a yell leader :-)
I love that when you tell me that you love me, it sounds the same way it did 13+ years ago on our wedding day.
I love that you clean toilets without being asked.
I think it's pretty awesome that I can trust you with the laundry.
I'm thankful that we can finish one another's sentences.
You. Are. Awesome.
Here's to 37 years (17 with me) and to many, many, many more...
Sunday, October 18, 2009
NICU, Day 31: October 18, 2009
A whole month, really? Really? I can honestly say I thought we'd be home by now. That's a sentiment shared by Scott and all our nurses and doctors!
We were able to catch up with one of our nurses from Seton and found out the "discharge scoop" on all the other babies in our bay. For those that have been following us for a bit, we found out that Nola, Bruce, the twins and Jacob have all gone home. That gives us great hope that we'll join the discharge ranks sometime - hopefully soon...
On that front, we spent most of the day with Master Luke. One of our fabulous nurses, Gabby, was able to get his PICC line reinserted, this time in his arm, and it wasn't nearly the saga as it was last time. Thank the good Lord. He was a little fussy today, but not nearly what he was yesterday. We think that 50% of his crankpot self was attributed to him messing with his old PICC line and the other 50% to extreme hunger. I mean, if you were 31 days old and had only eaten 7 of those, wouldn't you be chomping at the bit too?
Tomorrow morning at rounds we'll discuss starting feeds again. We shall see. I'm hoping 'yes', but we have to see what Luke has to say about that. This kid...
Tonight we celebrated Scott's birthday (the actual day is Monday!) and it was really nice. What's not to love about a birthday that includes Rudy's, lots of laughs and a homemade kiwi cheesecake? The only missing ingredient was one cute little peanut residing at Dell Children's. The kids are off school tomorrow, so perhaps we can arrange a meeting through the lobby glass window between them and their little brother.
Thanks for the prayers - lift them up for my sweet husband and his newest son. They both have big days tomorrow!
We were able to catch up with one of our nurses from Seton and found out the "discharge scoop" on all the other babies in our bay. For those that have been following us for a bit, we found out that Nola, Bruce, the twins and Jacob have all gone home. That gives us great hope that we'll join the discharge ranks sometime - hopefully soon...
On that front, we spent most of the day with Master Luke. One of our fabulous nurses, Gabby, was able to get his PICC line reinserted, this time in his arm, and it wasn't nearly the saga as it was last time. Thank the good Lord. He was a little fussy today, but not nearly what he was yesterday. We think that 50% of his crankpot self was attributed to him messing with his old PICC line and the other 50% to extreme hunger. I mean, if you were 31 days old and had only eaten 7 of those, wouldn't you be chomping at the bit too?
Tomorrow morning at rounds we'll discuss starting feeds again. We shall see. I'm hoping 'yes', but we have to see what Luke has to say about that. This kid...
Tonight we celebrated Scott's birthday (the actual day is Monday!) and it was really nice. What's not to love about a birthday that includes Rudy's, lots of laughs and a homemade kiwi cheesecake? The only missing ingredient was one cute little peanut residing at Dell Children's. The kids are off school tomorrow, so perhaps we can arrange a meeting through the lobby glass window between them and their little brother.
Thanks for the prayers - lift them up for my sweet husband and his newest son. They both have big days tomorrow!
Happy Feast Day of St. Luke!
I can't think of a better day to celebrate the Feast Day of St. Luke, patron saint of physicians and surgeons, than today.
It's a big day for "our" Luke as the nurses reinsert his PICC line. Browsing around, I found this great information on this beloved apostle. But, you can read more here, too.
Luke's inspiration and information for his Gospel and Acts came from his close association with Paul and his companions as he explains in his introduction to the Gospel: "Since many have undertaken to set down an orderly account of the events that have been fulfilled among us, just as they were handed on to us by those who from the beginning were eyewitnesses and servants of the word, I too decided, after investigating everything carefully from the very first, to write an orderly account for you, most excellent Theophilus" (Luke 1:1-3).
Luke's unique perspective on Jesus can be seen in the six miracles and eighteen parables not found in the other gospels. Luke's is the gospel of the poor and of social justice. He is the one who tells the story of Lazarus and the Rich Man who ignored him. Luke is the one who uses "Blessed are the poor" instead of "Blessed are the poor in spirit" in the beatitudes. Only in Luke's gospel do we hear Mary 's Magnificat where she proclaims that God "has brought down the powerful from their thrones, and lifted up the lowly; he has filled the hungry with good things, and sent the rich away empty" (Luke 1:52-53).
Luke also has a special connection with the women in Jesus' life, especially Mary. It is only in Luke's gospel that we hear the story of the Annunciation, Mary's visit to Elizabeth including the Magnificat, the Presentation, and the story of Jesus' disappearance in Jerusalem. It is Luke that we have to thank for the Scriptural parts of the Hail Mary: "Hail Mary full of grace" spoken at the Annunciation and "Blessed are you and blessed is the fruit of your womb Jesus" spoken by her cousin Elizabeth.
Forgiveness and God's mercy to sinners is also of first importance to Luke. Only in Luke do we hear the story of the Prodigal Son welcomed back by the overjoyed father. Only in Luke do we hear the story of the forgiven woman disrupting the feast by washing Jesus' feet with her tears. Throughout Luke's gospel, Jesus takes the side of the sinner who wants to return to God's mercy.
Reading Luke's gospel gives a good idea of his character as one who loved the poor, who wanted the door to God's kingdom opened to all, who respected women, and who saw hope in God's mercy for everyone.
St. Luke the Evangelizer...pray for us!!
It's a big day for "our" Luke as the nurses reinsert his PICC line. Browsing around, I found this great information on this beloved apostle. But, you can read more here, too.
Luke's inspiration and information for his Gospel and Acts came from his close association with Paul and his companions as he explains in his introduction to the Gospel: "Since many have undertaken to set down an orderly account of the events that have been fulfilled among us, just as they were handed on to us by those who from the beginning were eyewitnesses and servants of the word, I too decided, after investigating everything carefully from the very first, to write an orderly account for you, most excellent Theophilus" (Luke 1:1-3).
Luke's unique perspective on Jesus can be seen in the six miracles and eighteen parables not found in the other gospels. Luke's is the gospel of the poor and of social justice. He is the one who tells the story of Lazarus and the Rich Man who ignored him. Luke is the one who uses "Blessed are the poor" instead of "Blessed are the poor in spirit" in the beatitudes. Only in Luke's gospel do we hear Mary 's Magnificat where she proclaims that God "has brought down the powerful from their thrones, and lifted up the lowly; he has filled the hungry with good things, and sent the rich away empty" (Luke 1:52-53).
Luke also has a special connection with the women in Jesus' life, especially Mary. It is only in Luke's gospel that we hear the story of the Annunciation, Mary's visit to Elizabeth including the Magnificat, the Presentation, and the story of Jesus' disappearance in Jerusalem. It is Luke that we have to thank for the Scriptural parts of the Hail Mary: "Hail Mary full of grace" spoken at the Annunciation and "Blessed are you and blessed is the fruit of your womb Jesus" spoken by her cousin Elizabeth.
Forgiveness and God's mercy to sinners is also of first importance to Luke. Only in Luke do we hear the story of the Prodigal Son welcomed back by the overjoyed father. Only in Luke do we hear the story of the forgiven woman disrupting the feast by washing Jesus' feet with her tears. Throughout Luke's gospel, Jesus takes the side of the sinner who wants to return to God's mercy.
Reading Luke's gospel gives a good idea of his character as one who loved the poor, who wanted the door to God's kingdom opened to all, who respected women, and who saw hope in God's mercy for everyone.
St. Luke the Evangelizer...pray for us!!
Saturday, October 17, 2009
NICU, Day 30: October 17, 2009
AAAAAAAARRRRRRRRRRRGGGGGGGGGG! Ok, I'll explain that in a minute.
This morning, we enjoyed two action-packed soccer games, courtesy of John Paul and Anna-Laura. ALG's team cleaned house, winning by double digits, and John Paul's just had fun. Both scored some goals so they were happy :-) The sunshine and beautiful day were a welcome sight for all of us.
Around noon, I started getting the itch. I hadn't seen Luke all morning and I felt the anxiety rising. After a quick call to the NICU, I found out Luke scored one of our favorite nurses, Beth, and that a sweet friend of ours, Janet (also a NICU nurse), had been helping out. When I learned that she had been holding Luke for a few hours because he'd been fussy, I teared up. Really, I did. There was great peace in knowing that he was in hands that I completely and totally trusted. Thank you, Dear Lord, thank you.
Scott and I spent the better part of the afternoon and evening with Luke. He was certainly fussier than normal (he was ravenous and it showed) and the peak hit around 7. He was freaking out. Translation? I was freaking out. Normally, when my kids cry like that, I change their diaper, bundle them up and nurse them. I hate, hate, hate, hate not being able to feed and nurse him. It's agony for both of us. I was darn well near tears until 9, when we finally got him settled down.
Now, back to the first line of the post.
Phone rings at 10:35 and it's the neonatologist. Crap.
Seems as if Luke has pulled out his PICC line (not good). It's the line that gives him his nutrients, his meds and everything else. Pulling it out means we have to put in another one sometime tomorrow. Folks, this ain't no ordinary IV. It's his lifeline because he's not eating. And, it took SIX tries to get it in the first time. And, he was heavily sedated when they did all the poking. Please offer up your prayers for tomorrow. It will be a hard day on all of us as we find another place to insert the line.
Dang it.
Silver lining? We were blessed with two really extra fantastic neos tonight and tomorrow - Dr. Pont and Dr. Michael. God bless those two.
So, we'll head up there in the morning and spend that time in consultation with the docs as we figure out the next step.
I'm tired - aren't you? Tomorrow is another day. Here's hoping that today's "step back" will be tomorrow's "step forward."
This morning, we enjoyed two action-packed soccer games, courtesy of John Paul and Anna-Laura. ALG's team cleaned house, winning by double digits, and John Paul's just had fun. Both scored some goals so they were happy :-) The sunshine and beautiful day were a welcome sight for all of us.
Around noon, I started getting the itch. I hadn't seen Luke all morning and I felt the anxiety rising. After a quick call to the NICU, I found out Luke scored one of our favorite nurses, Beth, and that a sweet friend of ours, Janet (also a NICU nurse), had been helping out. When I learned that she had been holding Luke for a few hours because he'd been fussy, I teared up. Really, I did. There was great peace in knowing that he was in hands that I completely and totally trusted. Thank you, Dear Lord, thank you.
Scott and I spent the better part of the afternoon and evening with Luke. He was certainly fussier than normal (he was ravenous and it showed) and the peak hit around 7. He was freaking out. Translation? I was freaking out. Normally, when my kids cry like that, I change their diaper, bundle them up and nurse them. I hate, hate, hate, hate not being able to feed and nurse him. It's agony for both of us. I was darn well near tears until 9, when we finally got him settled down.
Now, back to the first line of the post.
Phone rings at 10:35 and it's the neonatologist. Crap.
Seems as if Luke has pulled out his PICC line (not good). It's the line that gives him his nutrients, his meds and everything else. Pulling it out means we have to put in another one sometime tomorrow. Folks, this ain't no ordinary IV. It's his lifeline because he's not eating. And, it took SIX tries to get it in the first time. And, he was heavily sedated when they did all the poking. Please offer up your prayers for tomorrow. It will be a hard day on all of us as we find another place to insert the line.
Dang it.
Silver lining? We were blessed with two really extra fantastic neos tonight and tomorrow - Dr. Pont and Dr. Michael. God bless those two.
So, we'll head up there in the morning and spend that time in consultation with the docs as we figure out the next step.
I'm tired - aren't you? Tomorrow is another day. Here's hoping that today's "step back" will be tomorrow's "step forward."
Friday, October 16, 2009
NICU, Day 29: October 16, 2009
Happy one-month birthday Luke!!
As happy as we are about that milestone, I'm madder than hell that it's been spent in the NICU. Sorry, folks. It's late and I'm being honest :-)
By all accounts, it was an uneventful day. I had a great visit with our surgeon, filled with a balanced dose of candor and humor. And, we bid a sweet farewell to our resident, Eric. He's off to the East Side Clinic and then to the PICU at Dell. We're hoping we get to bug him again. He will be entering private pediatric practice at the end of his resident year and we can't think of a more perfect fit. Eric, you were compassionate, funny, knowledgeable, patient, kind and honest with us. I didn't even mind your 5:45am calls with our "Luke reports" :-). Thanks for being along on the ride with us. It's been an honor. Really. Oh, and I did I mention he's an Aggie, Class of '03? Howdy, Hullaballo and GIG 'EM :-)
We had some really wonderful moments of reflection today. Some "reflective" and some "God, I'm still very angry with you." Judy, if you're reading this, please pass along some genuine thanks to your sister for her gift. Scott and I spent some time praying over Luke tonight...powerful doesn't quite describe it. Then, we were off to the chapel to ask for God's prayers for our marriage.
If I haven't said it recently, I'd like to share it with you now. I have a God-fearing man as a husband. I stand in awe of his faith and feel like the luckiest wife in the world to call him Mr. Wonderful. He is all that (circle and a snap) and a bag of chips.
We'll work on the "uneventful" on Luke's end. Y'all make it a great weekend.
Thursday, October 15, 2009
NICU, Day 28: October 15, 2009
I've had a few requests for more raw Kathryn - read on, my friends, read on. (oh and this post is probably PG13, not the "family friendly" one)
Today really stunk. Really and truly, one of our worst days in the NICU. As Dr. M said last night, it could be worse. But, as my sweet nurse Beth reminded me this morning, it could also be a helluva lot better. I like Beth's version.
On our way to the hospital this morning, we got a call from the resident and they found blood in Luke's diaper. By all accounts, it looks like the NEC has returned, this time in his colon. And we just thought the Third Ring of Hell was over.
There were a lot of tears from me today, a fair amount of Luke holding, some "are you freakin' kidding me" looks between Scott and I and a whole lot of anger at God. Yes, I said that out loud. Just really frustrated that our 4lb. son has to endure such a battle. That just doesn't seem right.
It's taking us a while to wrap our brains around all this. You see, Luke's initial case of NEC was bad - and I mean really, really bad. The surgeons and neos told us it could recur. Ding, ding, ding...they were right. So, what does it mean and where do we go from here?
It means that Luke will be NPO (no feeds) for another 7 days and will be on antibiotics. And, we'll be looking for a few things over the next few days - his belly (is it distended or soft), his behavior (happy or not), his pain level (minimal or horrible), his diapers (no blood or blood), his white blood cell count (stabilized or rising). In a few days, we'll do an ultrasound to look for abscesses and extra fluid. If that's inconclusive and he's showing signs of not getting better, then we'll do an oral contrast and if that's inconclusive we'll have to go back in surgically and look at his colon, possibly removing some of it. To clarify, the really icky part is that the antibiotics haven't really shown that they help get rid of NEC, but it's the best that medicine can offer right now.
God gave us a few rays of sunlight in the darkness today. Fr. Bud, what a providential meeting with you on Floor 4 at Dell Children's. Your compassion and your raw emotions were a welcome breath of spirituality that we so desperately needed. Colleen and Peter - thank you for the hugs and laughter. Melanie, thank you for your texts :-) All you prayer warriors, thank you for lifting us up.
So that's the skinny. Luke is really sick. And I'm scared to death that he may not get better. Yes, I said that out loud. Today reminded me that Scott and I are not superhuman (although I never really believed that pipe dream), we are just imperfectly human. We are parents who love our children beyond comprehension and we are madly in love with Luke. We find ourselves dreaming of the day he sits in our living room with the rest of the chaos. But we are also keenly aware of the fragility of life. There aren't any guarantees.
Do we believe in miracles? Absolutely.
Do we pray for one? Nope.
Why not? Because I think that's a chicken way to pray. Really I do. That's the easy prayer. The "Oh God, please take away the pain and make him better" doesn't make me rely on God. It gives me false hope and when God doesn't answer that prayer the way we want, then some lose faith. Our prayer is this...that God gives us the grace the strength and the wisdom to endure whatever path he has carved for our family. We know - and truly believe - that Luke's purpose is great. We just don't know how great it will become.
Dear Lord, this path is hard and we are tired. In those moments that we feel we cannot do this (and we had a tubload today) show us that we can. I never knew hope could come in such a tiny, hospital-blanket-wrapped bundle named Luke.
St. Luke the Evangelizer...pray for us.
Today really stunk. Really and truly, one of our worst days in the NICU. As Dr. M said last night, it could be worse. But, as my sweet nurse Beth reminded me this morning, it could also be a helluva lot better. I like Beth's version.
On our way to the hospital this morning, we got a call from the resident and they found blood in Luke's diaper. By all accounts, it looks like the NEC has returned, this time in his colon. And we just thought the Third Ring of Hell was over.
There were a lot of tears from me today, a fair amount of Luke holding, some "are you freakin' kidding me" looks between Scott and I and a whole lot of anger at God. Yes, I said that out loud. Just really frustrated that our 4lb. son has to endure such a battle. That just doesn't seem right.
It's taking us a while to wrap our brains around all this. You see, Luke's initial case of NEC was bad - and I mean really, really bad. The surgeons and neos told us it could recur. Ding, ding, ding...they were right. So, what does it mean and where do we go from here?
It means that Luke will be NPO (no feeds) for another 7 days and will be on antibiotics. And, we'll be looking for a few things over the next few days - his belly (is it distended or soft), his behavior (happy or not), his pain level (minimal or horrible), his diapers (no blood or blood), his white blood cell count (stabilized or rising). In a few days, we'll do an ultrasound to look for abscesses and extra fluid. If that's inconclusive and he's showing signs of not getting better, then we'll do an oral contrast and if that's inconclusive we'll have to go back in surgically and look at his colon, possibly removing some of it. To clarify, the really icky part is that the antibiotics haven't really shown that they help get rid of NEC, but it's the best that medicine can offer right now.
God gave us a few rays of sunlight in the darkness today. Fr. Bud, what a providential meeting with you on Floor 4 at Dell Children's. Your compassion and your raw emotions were a welcome breath of spirituality that we so desperately needed. Colleen and Peter - thank you for the hugs and laughter. Melanie, thank you for your texts :-) All you prayer warriors, thank you for lifting us up.
So that's the skinny. Luke is really sick. And I'm scared to death that he may not get better. Yes, I said that out loud. Today reminded me that Scott and I are not superhuman (although I never really believed that pipe dream), we are just imperfectly human. We are parents who love our children beyond comprehension and we are madly in love with Luke. We find ourselves dreaming of the day he sits in our living room with the rest of the chaos. But we are also keenly aware of the fragility of life. There aren't any guarantees.
Do we believe in miracles? Absolutely.
Do we pray for one? Nope.
Why not? Because I think that's a chicken way to pray. Really I do. That's the easy prayer. The "Oh God, please take away the pain and make him better" doesn't make me rely on God. It gives me false hope and when God doesn't answer that prayer the way we want, then some lose faith. Our prayer is this...that God gives us the grace the strength and the wisdom to endure whatever path he has carved for our family. We know - and truly believe - that Luke's purpose is great. We just don't know how great it will become.
Dear Lord, this path is hard and we are tired. In those moments that we feel we cannot do this (and we had a tubload today) show us that we can. I never knew hope could come in such a tiny, hospital-blanket-wrapped bundle named Luke.
St. Luke the Evangelizer...pray for us.
Wednesday, October 14, 2009
NICU, Day 27: October 14, 2009
According to Scott, I speak Luke. Who knew I was bilingual? I like it when he calls me the Luke Whisperer. Either way you slice it, Luke and I are like peas and carrots. I always seem to be around when something big happens...
![]()
I'm feeling good about the feeds resuming tomorrow and encouraged by what I saw today. His incision looks amazing (I saw it for the first time today!) and I gave kudos to the surgeon. He did get a blood transfusion this afternoon to help his heart out a bit and we think it will send some much-needed blood flow to his gut. He's officially off the pain meds, too. He was a little fussy today, but he was rooting around like one hungry kiddo.
That's what we need big guy. A healthy appetite.
Will had a flag football game tonight - amazingly, it was NOT rained out - and it's the rescheduled game from the rescheduled game. But, he decided to take a detour to the doctor's office. While he doesn't "technically" have the flu, he's on meds anyway. Actually, we're ALL on Tamiflu as a precaution. Momma ain't taking chances. Everyone is in quarantine. I had four doctors and a dozen nurses (no lie) tell me to get on Tamiflu. Shoot, I should buy stock in Purell as it is.
Fairly uneventful day today. Just the way we like 'em. One thing I neglected to post yesterday were two great phone calls I got - one from my previous OB and one from our pediatrician. Dr. Orth, OB, and I chatted about the delivery and she was so thankful that we made it as far as we did...and that we switched hospitals so Luke could be closer to the NICU. You gotta love a Catholic doctor that appreciates the St. Luke name choice, as well :-) The pediatrician, Dr. Enders, and I had a heart-to-heart about NEC, heart stuff and where we go from here. I can't say enough complimentary things about our kid doc. She's intuitive, smart and very "pediatric". Those that have a pediatrician they love, know what I'm talking about here. I can't wait for her and Luke to meet. Just as we said goodbye, she ends with, "Kathryn, just know that if there are any parents that weather NEC, it is you and Scott. You two, as well as Luke, are in my constant prayers." See? I told you she was awesome.
During my nightly visit to Luke, I had the chance to visit with our favorite neo, Dr. Michael. Well, to be perfectly frank, they're all pretty darn fantastic. But, I suppose we have a special connection with Dr. M as he was with us on our worst day - and we've gone nowhere but up since then. He has this charming British accent and as he left Luke's room tonight, he gave me the thumbs up and said, "Good job, carry on!" Go ahead, say it out loud so you can really appreciate that moment :-)
With that, we'll call 'er a night. You FB stalkers can receive up-to-the-minute updates on feeds tomorrow...and yes, I'll post the rest of the story here on the blog. Thanks for offering up your best, biggest and brightest prayers for tomorrow.
I'm feeling good about the feeds resuming tomorrow and encouraged by what I saw today. His incision looks amazing (I saw it for the first time today!) and I gave kudos to the surgeon. He did get a blood transfusion this afternoon to help his heart out a bit and we think it will send some much-needed blood flow to his gut. He's officially off the pain meds, too. He was a little fussy today, but he was rooting around like one hungry kiddo.
That's what we need big guy. A healthy appetite.
Will had a flag football game tonight - amazingly, it was NOT rained out - and it's the rescheduled game from the rescheduled game. But, he decided to take a detour to the doctor's office. While he doesn't "technically" have the flu, he's on meds anyway. Actually, we're ALL on Tamiflu as a precaution. Momma ain't taking chances. Everyone is in quarantine. I had four doctors and a dozen nurses (no lie) tell me to get on Tamiflu. Shoot, I should buy stock in Purell as it is.
Fairly uneventful day today. Just the way we like 'em. One thing I neglected to post yesterday were two great phone calls I got - one from my previous OB and one from our pediatrician. Dr. Orth, OB, and I chatted about the delivery and she was so thankful that we made it as far as we did...and that we switched hospitals so Luke could be closer to the NICU. You gotta love a Catholic doctor that appreciates the St. Luke name choice, as well :-) The pediatrician, Dr. Enders, and I had a heart-to-heart about NEC, heart stuff and where we go from here. I can't say enough complimentary things about our kid doc. She's intuitive, smart and very "pediatric". Those that have a pediatrician they love, know what I'm talking about here. I can't wait for her and Luke to meet. Just as we said goodbye, she ends with, "Kathryn, just know that if there are any parents that weather NEC, it is you and Scott. You two, as well as Luke, are in my constant prayers." See? I told you she was awesome.
During my nightly visit to Luke, I had the chance to visit with our favorite neo, Dr. Michael. Well, to be perfectly frank, they're all pretty darn fantastic. But, I suppose we have a special connection with Dr. M as he was with us on our worst day - and we've gone nowhere but up since then. He has this charming British accent and as he left Luke's room tonight, he gave me the thumbs up and said, "Good job, carry on!" Go ahead, say it out loud so you can really appreciate that moment :-)
With that, we'll call 'er a night. You FB stalkers can receive up-to-the-minute updates on feeds tomorrow...and yes, I'll post the rest of the story here on the blog. Thanks for offering up your best, biggest and brightest prayers for tomorrow.
Take Five
While we've been living a dual life at the hospital and at home, our kids haven't lost their sense of humor. I usually save the "quotes of the week" for Fridays, but I thought I'd give you an early present today...
Here's our best five...
1. "It's colder than the freezer outside!" - Will
2. "Let's get this party started." - John Paul, in reference to putting together the 1,000-piece "Texas" puzzle
3. "Luke is sicker than a dog, right Mom?" - John Paul (oh, and when we asked where he heard that, he threw Nana under the bus)
4. "Mom, give Wuke a hug for me, but not too tight 'cause he's little." - Anna-Laura
5. "That lady sure can cook." - John Paul in response to one of the meals we got.
Here's our best five...
1. "It's colder than the freezer outside!" - Will
2. "Let's get this party started." - John Paul, in reference to putting together the 1,000-piece "Texas" puzzle
3. "Luke is sicker than a dog, right Mom?" - John Paul (oh, and when we asked where he heard that, he threw Nana under the bus)
4. "Mom, give Wuke a hug for me, but not too tight 'cause he's little." - Anna-Laura
5. "That lady sure can cook." - John Paul in response to one of the meals we got.
Tuesday, October 13, 2009
NICU, Day 26: October 13, 2009
Today, if you can believe it, was slated to be my due date. Ironically, I'm so glad I didn't make it this far...I've gotten to love on Luke for an extra 3 1/2 weeks - what's not magical about that?
This morning, he returned to the Luke I know. He was calmer, happier and much more content. After a long visit with the neonatologist this morning, we've decided to hold off on any more feeds until Thursday. And, we'll probably do 3cc every 6 hours, instead of every 3. His belly just needs more rest.
So we watch and wait.
Again.
I also chatted with the cardiologist. After the most recent EKG, looks like the PDA is not closing after all, but we'll tackle the PDA and the VSD at a later date. We'll repeat the EKG weekly for now unless we see something concerning. Whew. One major organ at a time, doc.
Last night as Scott and I sat holding Luke, we both came to the slow realization that we have two options.
#1: We can be sad that he's not at home with us and throw a really big pity party.
-or-
#2: We can be thankful that he's in the best place right now...with state-of-the-art machines, doctors and nurses who monitor him 24/7. And, that we're in a country that provides amazing healthcare. Yes, I know some might disagree, but we're in a better hospital than so many other places around the world.
So, pity party or thankful. I'll take 90% thankful, 10% pity party. Nice compromise, don't you think?
In the "spirit of thankfulness," I thought it would be appropriate to share this letter that Will wrote in class this week. Man, I love that kid.
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And, to add insult to injury, at 7:53 p.m. the flu swab came back positive on son #2. Lovely. You know, 'cause we didn't have enough going on around here. Thank the good Lord that Granny is here to care for him while we put John Paul in quarantine. If either Scott or I gets sick, we have to stay away from the NICU for seven - yes, SEVEN - days. Not gonna do it. Stay away you crazy flu.
Here's to a restful few days - for all of Team Whitaker. David must rest. Goliath will be here later in the week.
This morning, he returned to the Luke I know. He was calmer, happier and much more content. After a long visit with the neonatologist this morning, we've decided to hold off on any more feeds until Thursday. And, we'll probably do 3cc every 6 hours, instead of every 3. His belly just needs more rest.
So we watch and wait.
Again.
I also chatted with the cardiologist. After the most recent EKG, looks like the PDA is not closing after all, but we'll tackle the PDA and the VSD at a later date. We'll repeat the EKG weekly for now unless we see something concerning. Whew. One major organ at a time, doc.
Last night as Scott and I sat holding Luke, we both came to the slow realization that we have two options.
#1: We can be sad that he's not at home with us and throw a really big pity party.
-or-
#2: We can be thankful that he's in the best place right now...with state-of-the-art machines, doctors and nurses who monitor him 24/7. And, that we're in a country that provides amazing healthcare. Yes, I know some might disagree, but we're in a better hospital than so many other places around the world.
So, pity party or thankful. I'll take 90% thankful, 10% pity party. Nice compromise, don't you think?
In the "spirit of thankfulness," I thought it would be appropriate to share this letter that Will wrote in class this week. Man, I love that kid.
And, to add insult to injury, at 7:53 p.m. the flu swab came back positive on son #2. Lovely. You know, 'cause we didn't have enough going on around here. Thank the good Lord that Granny is here to care for him while we put John Paul in quarantine. If either Scott or I gets sick, we have to stay away from the NICU for seven - yes, SEVEN - days. Not gonna do it. Stay away you crazy flu.
Here's to a restful few days - for all of Team Whitaker. David must rest. Goliath will be here later in the week.
Monday, October 12, 2009
NICU, Day 25: October 12, 2009
Well, damn. Sorry, you get raw Kathryn tonight.
We started feeds this morning, just after 10am rounds, and Luke seemed to like the taste and remembered how to suck on the bottle. Small victory. He took quite a while to calm down, though he wasn't really acting hungry. Can you say flashback to two weeks ago?
I visited with his surgeon, who was very pleased with his progress. We talked details about his reanastomosis (i.e. the surgical repair of his bowel where we will reattach his small intestine back to his colon). Right now, it's been brought to the outside of his belly, his "stoma". And, we chatted about his circumcision and when that might take place. All in all, a good, upbeat report.
Finally got Master Luke calmed down and went to lunch in the hospital cafeteria. When I got back he was still sleeping soundly, so I settled in to write some thank you notes. I was three words into the first one when he started crying again. His 2:30 feed didn't really go that well (keep in mind, he's only taking about 3cc or 1/2 teaspoon at each one) and that's when I started to worry. Scratch that, I was worried before we ever started the first feed, but my instinct was to amp up the worry. Done...and...done.
We gave him a quick shot of pain meds, but nothing seemed to calm him down. Not even all my baby soothing tricks worked - and folks, I know a lot. Finally, at 4, he calmed enough where I felt I could leave. Although, I did page the neo and we chatted briefly. I told them to call after his 5:30 feeding if it didn't go well.
I reluctantly met Scott and the kids out front and we came home. 6:46 the phone rang and it was the doctor. Surprise, surprise. We've decided to stop feeds until at least tomorrow and let his belly rest some more. We'll also be giving him a pH medicine (like Zantac for babies) to help with the irritation.
Scott and I went up to the hospital tonight. We hadn't been there 5 minutes when Luke started gagging. I immediately sat him up and he threw up all over the bed.
I am telling you...there were so many things that went through my head I felt like the room was spinning. Is the NEC back? Did the strictor happen and is he not digesting the food? Did they do an xray? Are these doctors on crack cocaine? Why is my baby suffering? I could keep going, but that's enough to get you in my shoes for tonight.
Answers to the above are: We don't think so. Probably not. Yes and it looked fine. No, but a dose for me might be in order. Only God knows that one.
So, we watch and wait. Again. I told you people it was a roller coaster. Sorry I've drug you along...but you can't get off now! While we continue to ask for your prayers for Luke's healing, I'd like to throw another one in the ring...pray for our family's sanity. Pray that our kids will continue to endure this craziness, pray that Scott and I will be the best parents we can. This tug of war on our hearts is so incredibly exhausting. The crying when we put our kids to bed, the crying when we leave Luke at the hospital. It's hard. And it stinks. And every single day gets harder and harder.
We get a taste of normal and then we get sucked back into the NICU crazy.
St. Luke, pray for us.
St. Mary, Mother of God, pray for us.
St. Joseph, pray for us.
Tomorrow is a new day...here's to a few more small victories.
We started feeds this morning, just after 10am rounds, and Luke seemed to like the taste and remembered how to suck on the bottle. Small victory. He took quite a while to calm down, though he wasn't really acting hungry. Can you say flashback to two weeks ago?
I visited with his surgeon, who was very pleased with his progress. We talked details about his reanastomosis (i.e. the surgical repair of his bowel where we will reattach his small intestine back to his colon). Right now, it's been brought to the outside of his belly, his "stoma". And, we chatted about his circumcision and when that might take place. All in all, a good, upbeat report.
Finally got Master Luke calmed down and went to lunch in the hospital cafeteria. When I got back he was still sleeping soundly, so I settled in to write some thank you notes. I was three words into the first one when he started crying again. His 2:30 feed didn't really go that well (keep in mind, he's only taking about 3cc or 1/2 teaspoon at each one) and that's when I started to worry. Scratch that, I was worried before we ever started the first feed, but my instinct was to amp up the worry. Done...and...done.
We gave him a quick shot of pain meds, but nothing seemed to calm him down. Not even all my baby soothing tricks worked - and folks, I know a lot. Finally, at 4, he calmed enough where I felt I could leave. Although, I did page the neo and we chatted briefly. I told them to call after his 5:30 feeding if it didn't go well.
I reluctantly met Scott and the kids out front and we came home. 6:46 the phone rang and it was the doctor. Surprise, surprise. We've decided to stop feeds until at least tomorrow and let his belly rest some more. We'll also be giving him a pH medicine (like Zantac for babies) to help with the irritation.
Scott and I went up to the hospital tonight. We hadn't been there 5 minutes when Luke started gagging. I immediately sat him up and he threw up all over the bed.
I am telling you...there were so many things that went through my head I felt like the room was spinning. Is the NEC back? Did the strictor happen and is he not digesting the food? Did they do an xray? Are these doctors on crack cocaine? Why is my baby suffering? I could keep going, but that's enough to get you in my shoes for tonight.
Answers to the above are: We don't think so. Probably not. Yes and it looked fine. No, but a dose for me might be in order. Only God knows that one.
So, we watch and wait. Again. I told you people it was a roller coaster. Sorry I've drug you along...but you can't get off now! While we continue to ask for your prayers for Luke's healing, I'd like to throw another one in the ring...pray for our family's sanity. Pray that our kids will continue to endure this craziness, pray that Scott and I will be the best parents we can. This tug of war on our hearts is so incredibly exhausting. The crying when we put our kids to bed, the crying when we leave Luke at the hospital. It's hard. And it stinks. And every single day gets harder and harder.
We get a taste of normal and then we get sucked back into the NICU crazy.
St. Luke, pray for us.
St. Mary, Mother of God, pray for us.
St. Joseph, pray for us.
Tomorrow is a new day...here's to a few more small victories.
Sunday, October 11, 2009
NICU, Days 23 & 24: October 10 & 11, 2009
Us, last weekend, when I got to hold Luke for the first time since his surgery. My, my how far we've come.
This weekend was a nice, peaceful one. Luke finished up all his antibiotics, slept well, cried a little but was calmed easily, maintained his blood pressures, had great pee action and enjoyed some time in mine and Scott's arms. Not nearly enough, but we'll take what we can get.
Granny left Saturday morning and will be back on Tuesday night. Nana and Papa helped this weekend and allowed Scott and I to spend some precious time with Luke. ALG had a fantastic soccer game (the only one that wasn't cancelled among the three others!) and even scored a goal. We heard she had no fear. That's my girl.
Tomorrow morning we head back into scary territory. Luke starts eating again. For a NEC patient, it's a big leap. We'll start out super slow, likely through a continuous drip on a feeding tube, and see how his bowel tolerates it. So many scenarios, so much anxiety, so little control. We humbly ask for you to offer him up in prayer tomorrow.
You know, I'd like to be selfish and ask God, "Please, heal his body completely and let this next phase go as we hope, without a hitch." And, I just might. But, I also know the second part of that prayer must include a, "Help us be at peace with your will, whatever that may be." Um, little tougher.
At my OB visit on Friday, Dr. W commented that life isn't without sorrow. And you know, she's right. If you live life, and I mean really live life, there will be sorrow. But, there will also be great joy. We've experienced those two and everything in between these past three weeks. Dr. W also was the first to ask how Scott and I are holding up. For the most part, pretty well. We've had our moments, you know the ones where you just scream at each other and fight about something that really doesn't warrant fighting, but you get it out of your system anyway. Yeah, we've had those. We've also had alot of silent hand holding, sweet smiles, backrubs, knee pats and reasurring hugs. One look at Luke and we are reminded why our marriage is so important. Our children are daily reminders of the love I have for Scott. He is just so incredibly awesome.
As I held Luke this afternoon he looked so healthy, so happy, so normal. My heart wants that more than anything. Tomorrow we blaze a new path and I feel confident that whatever turn it may take, we will be guided and lifted by your prayers. Quite honestly, I know we can't do it without you.
Here's to a restful night, sweet pea. We're praying for you tomorrow... As a sweet friend reminded me yesterday, Luke is a fighter. And she's betting on Team Whitaker. Me, too, Desiree, me too.
Friday, October 9, 2009
NICU, Day 22: October 9, 2009
My apologies for getting this off late. I had my OB visit yesterday and it kicked my tail - well, actually it kicked something else - and I was hopped on pain meds for most of the afternoon and evening. Hydrocodone I really do love you.
Before the visit, I had a great morning with Luke. He was alert and starting to look extremely hungry. Poor guy. When I hold him, it's gotta be like going to the buffet at Pizza Hut and not being able to eat. Monday, big guy, Monday. His blood counts and blood pressures looked good overnight, so the neo opted to give him a bye on the labs and on the blood transfusion. Small victories.
I enjoyed lunch with a friend - Melanie, you always know what I need - thank you. When we returned to the NICU, there was a Longhorn football player visiting each patient. Thankfully, we had Luke's A&M hat handy and lo and behold, momma was wearing her Aggie gear. I have a fabulous photo of the two of us with him. He encouraged us to do the hook 'em come Saturday. I reassured him we would, it just wouldn't be in that direction :-) Actually, he was incredibly polite, well spoken and very sincere when he told us to "get well soon." I told him the incentive for getting well was to cheer on the Ags come Turkey Day. That got a smile from both Luke and our Longhorn.
While I was recuperating at home, Scott spent the evening at the hospital with Luke. I suppose there was some much needed daddy-son bonding time going on. Quite happy that Scott enjoyed that time with him.
We'll get some rest tonight and then spend some time with Luke tomorrow. I'll get another post up late Sunday night - promise.
Before the visit, I had a great morning with Luke. He was alert and starting to look extremely hungry. Poor guy. When I hold him, it's gotta be like going to the buffet at Pizza Hut and not being able to eat. Monday, big guy, Monday. His blood counts and blood pressures looked good overnight, so the neo opted to give him a bye on the labs and on the blood transfusion. Small victories.
I enjoyed lunch with a friend - Melanie, you always know what I need - thank you. When we returned to the NICU, there was a Longhorn football player visiting each patient. Thankfully, we had Luke's A&M hat handy and lo and behold, momma was wearing her Aggie gear. I have a fabulous photo of the two of us with him. He encouraged us to do the hook 'em come Saturday. I reassured him we would, it just wouldn't be in that direction :-) Actually, he was incredibly polite, well spoken and very sincere when he told us to "get well soon." I told him the incentive for getting well was to cheer on the Ags come Turkey Day. That got a smile from both Luke and our Longhorn.
While I was recuperating at home, Scott spent the evening at the hospital with Luke. I suppose there was some much needed daddy-son bonding time going on. Quite happy that Scott enjoyed that time with him.
We'll get some rest tonight and then spend some time with Luke tomorrow. I'll get another post up late Sunday night - promise.
Thursday, October 8, 2009
NICU, Day 21: October 8, 2009
And 3 weeks flew by, just like that. Well, ok, not just like that...but 3 weeks??? Wow.
I had two bad lapses of judgement today. You'd think I'd know better.
Bad choice #1: Tried on the "skinny jeans". Bad, bad idea. Scott warned me - like he's done with every other child - not to do it. I turned the deaf ear and did it anyway. Not recommended.
Bad choice #2: I thought about a discharge date. Never a good idea in the NICU. I should know better by now that looking more than one day ahead is dangerous.
Both choices ended in tears.
Luke, however, continues to stay steady and run the course. He had another uneventful day and particularly enjoyed his "lab holiday" which meant no heel sticks for a whole 24 hours! He's been maintaining his blood pressures, too. So, tomorrow we'll draw blood before the weekend and then the doctor says he gets a "lab vacation." Totally different than a holiday. He gets a whole 48 hours of no blood draws. His heels must be doing a happy dance. He continues to be the rockstar at Dell.
I'll post tomorrow evening and then take a "blog holiday" until Sunday evening. I will still document the day, no worries, but I'll give everyone a break :-)
Monday, though, I'll come calling with some major prayer requests. We will likely start feeds on Monday and I'm trying to keep my anxiousness at bay. So far? Not doing well. Feed day will be the test of the surgery. Will the NEC come back? Will Luke's bowel need more surgery? Will he pass with flying colors? I hate not being in control, so dang hard for a Type Aer like myself. Luke and God have to do this one on their own while we sit on the sidelines and pray our hearts out.
Today was hard. Not sure why. I had a great lunch with a sweet friend. Daniele, thank you :-) When Scott picked me up, he said, "So, how is Luke's mom today?" I responded with tears. Scott just patted my leg. Man, I love that husband of mine. Hi roller coaster, I'm back for another round. Nothing hugely out of the ordinary happened today, and I suppose that's part of the problem. Sometimes I get a wild hair and I want to stash that cute boy of mine in my purse and smuggle him out of the NICU. Just before I walked out of his room, I gingerly laid my head on his breathing belly, let a few tears slide out and whispered just loud enough for Luke to stir, "Sweetheart, I love you with all my heart...Daddy and I will see you tonight for kisses."
Discharge day just really can't come soon enough.
Now, for a pick-me-up. When we were decorating Luke's door last week, I came across a family tree in the scrapbooking stuff and I got inspired. So, we made our own "tree" and asked all those who have cared for Luke - respiratory therapists, neonatologists, residents, ultrasound techs, nurses, cardiologists, surgeons, etc. - to fill out a leaf and place it on Luke's tree. It's the talk of the hallway. I love seeing how each person carefully places where to stick his/her leaf and then they proudly admire the tree. What a testament of love on his door. He is undoubtedly in some pretty amazing hands...
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I had two bad lapses of judgement today. You'd think I'd know better.
Bad choice #1: Tried on the "skinny jeans". Bad, bad idea. Scott warned me - like he's done with every other child - not to do it. I turned the deaf ear and did it anyway. Not recommended.
Bad choice #2: I thought about a discharge date. Never a good idea in the NICU. I should know better by now that looking more than one day ahead is dangerous.
Both choices ended in tears.
Luke, however, continues to stay steady and run the course. He had another uneventful day and particularly enjoyed his "lab holiday" which meant no heel sticks for a whole 24 hours! He's been maintaining his blood pressures, too. So, tomorrow we'll draw blood before the weekend and then the doctor says he gets a "lab vacation." Totally different than a holiday. He gets a whole 48 hours of no blood draws. His heels must be doing a happy dance. He continues to be the rockstar at Dell.
I'll post tomorrow evening and then take a "blog holiday" until Sunday evening. I will still document the day, no worries, but I'll give everyone a break :-)
Monday, though, I'll come calling with some major prayer requests. We will likely start feeds on Monday and I'm trying to keep my anxiousness at bay. So far? Not doing well. Feed day will be the test of the surgery. Will the NEC come back? Will Luke's bowel need more surgery? Will he pass with flying colors? I hate not being in control, so dang hard for a Type Aer like myself. Luke and God have to do this one on their own while we sit on the sidelines and pray our hearts out.
Today was hard. Not sure why. I had a great lunch with a sweet friend. Daniele, thank you :-) When Scott picked me up, he said, "So, how is Luke's mom today?" I responded with tears. Scott just patted my leg. Man, I love that husband of mine. Hi roller coaster, I'm back for another round. Nothing hugely out of the ordinary happened today, and I suppose that's part of the problem. Sometimes I get a wild hair and I want to stash that cute boy of mine in my purse and smuggle him out of the NICU. Just before I walked out of his room, I gingerly laid my head on his breathing belly, let a few tears slide out and whispered just loud enough for Luke to stir, "Sweetheart, I love you with all my heart...Daddy and I will see you tonight for kisses."
Discharge day just really can't come soon enough.
Now, for a pick-me-up. When we were decorating Luke's door last week, I came across a family tree in the scrapbooking stuff and I got inspired. So, we made our own "tree" and asked all those who have cared for Luke - respiratory therapists, neonatologists, residents, ultrasound techs, nurses, cardiologists, surgeons, etc. - to fill out a leaf and place it on Luke's tree. It's the talk of the hallway. I love seeing how each person carefully places where to stick his/her leaf and then they proudly admire the tree. What a testament of love on his door. He is undoubtedly in some pretty amazing hands...
Wednesday, October 7, 2009
NICU, Day 20: October 7, 2009
Today was eventful, but in a really, really fine way.
At my 4am phone call to the nurse, I learned that Luke's a dopamine graduate! So proud my kiddo is weaning off the drugs :-) He's done a good job of maintaining his blood pressure all day. And, his white blood cell count went down. Of course, everyone is taking credit, but I told them to get in line behind me.
He's still up and down on maintaining his body temperature, but we're getting there. He's a healthy 4.5 pounds - which means he's gained a whole pound.
Small victories, right?
I enjoyed some Luke love this morning and he was wide-eyed for most of it. It's as if he's looking around the room saying to himself, "Soooo, this is where I've been all week?" And then he goes cross-eyed. Me too, buddy. Me too.
If there is some silver lining, I saw some more of it today. Scott and I have been able to sneak away from work and the hospital at lunchtime and relish in some sans kids lunches. Luke has given us that gift. Not the way I envisioned, but it's certainly a welcome perk from the NICU crazy.
During rounds this morning (and then again this afternoon), I had the chance to meet another really great neo, Dr. Hodges. He followed our case before we knew who he was, courtesy of my college roomie, and he was so gracious and kind. Reminded me of my other favorite neo, Dr. Michael. Dell has this initiative, family-centered care, that they're employing and I absolutely love it. Every morning the doctors, nurses and staff do rounds to each room at Dell. We hear all about his blood gases, CBC levels, drug infusions and urine output (hey, we've learned if you're peeing, that's always a good sign). Who knew? The neo really asks for everyone's input, we make the plan for the day and then they always ask us if we have any concerns or questions. The unit NEVER closes for shift change, we can always page a nurse or neo for a consult and we really feel a part of Team Luke. If ever you have to be in the NICU, Dell is where you want to be. They have it going on.
Being married to a fundraiser, there are some things you just notice. Two things really stood out to Scott and I upon our admittance to Dell. The room we stayed in and the room where Luke resides were made possible by some very generous donors...and it got us thinking. I wonder why they gave? I wonder what their connection is to the NICU? So we asked. And we were humbled. Man, the generosity of people and their connection to such a special place continues to amaze me. To the Cockrum and Berlowitz families...there will never be enough thanks. Ever.
We came back home for flag football practice and dinner, then back to Dell for our goodnight kisses. That really is some amazingly powerful time. The NICU isn't nearly as nuts as during the day, it's a little quieter and we find ourselves enjoying the reflection time.
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