54 days have passed since we met our tiny new baby boy. As 2011 comes to a close, the last 2 months easily supercede the previous 10 in major events, emotion, finances, stress and yes, even the good stuff.
Lets start off this post with a quick update on our rapidly growing baby boy.
3 lbs 1 oz
22cc feeds
Room-air O2 settings
Eyes now "looking around"
More deliberate hand movement(he grabs our fingers and pushes on wires more)
CPAP didn't go well, but since they re-intubated he is on the lowest ventilator setting
Brain bleed remains the same, not getting bigger
Now to the good stuff! Cash is growing quickly, thanks to the tremendous efforts of his dedicated mommy. He is very lucky to have her. Daily visits continue, and skin to skin time averages about 12 hrs a week. I held our little pooter a couple days ago for a feeding and it was amazing to see him looking at me, up close and personal. Cash looks like his daddy. Yep, I said it! Especially when he puckers his lip and his little brow scrunches up. Too darn cute I tell ya. He is very particular about his positioning, and gets upset when he hears his neighbors crying. Thankfully his noisiest neighbor is all set to head home in the next few days. This should reduce Cash' stress level.
Cash has blue eyes, and his mommy thinks they will stay that way. We will see, but no matter to me. When I look in his eyes and hum songs, I know he recognizes his proud pappa. I was looking down at him the other day and could see his pupils open and close as I got closer and moved around. He is focusing and that gives me so much joy to know he is fixated on my smile while admiring him.
While holding Cash, Kim has mentioned her feeling Cash go poo. She thinks its cute. I'll pass. The funny part is that the other day while Kim changed Cash, Savy got to see the projectile #2 that Kim had mentioned to us before. Savy was disgusted but amazed. Her explanation was pretty funny.
While we are on this subject, Cash' diaper has gone up 2 sizes! Its the little things.
We have been blessed with 4 great primary nurses who have chosen to work with Cash. This means that on average, we will have at least 12 hours of every day with a nurse who knows his little quirks and exactly what he likes. This is a huge blessing, and we are lucky to have them.
Oh, oh, oh, I almost forgot to mention. Cash has already made his debut on the small screen. Well, not really, but he was filmed, briefly. Well his isolet was, so its close enough. The little doctor Jen Arnold from "The Little Couple" was being filmed as she walked past Cash. She waved to me and said hello, then quickly disappeared behind the wall. The next day, sans cameras, she was briefed about Cash' case. She is transitioning two primary neonatologists for a couple days. I must say, this lady is small. Super duper, small. Her story is quite amazing, and she does great things for lots of babies at TCH!
As a quick note: We had a nice Christmas, and visited with Cash on Christmas day. Savy has already baked cookies in her EZ Bake oven, and I will be scheduling my private shooting lessons at Hot Wells tomorrow. Granny is here now, and Savy's 8th birthday is fast approaching on Thursday.
We hope you all had a safe and enjoyable Christmas, and truly appreciate each of you for following Cash' journey, offering prayers and support. Thanks to you all!
Tuesday, December 27, 2011
Tuesday, December 20, 2011
So This Is Christmas 3...
Here is the latest:
2lbs 10oz
14.5 in
Staph infection GONE!!! Woohoo!
19cc feeds x 8 per day
No pda in heart scan (this is good)
Brain scan - stable/no change
Cash has been holding up well. Growing by the day, he is getting stronger and more feisty. He pulled his ventillation tube nearly out the other day! He is "rooting" for more momma milk, but he can't do that since he is intubated. Kimberley is sticking to her daily routine of kangaroo/skin to skin time everyday for at least two hours during a feeding. She amazes me. We now have 4 primary nurses, which is great; hopefully we will get a couple more. Sure makes it easier and less stressful to have nurses familiar with Cash' needs and quirks. Cash has developed some more facial expressions, including the "poop" face and even a small smile. We are so excited to see him hit the 3 lbs mark, then hopefully take another try at going onto the CPAP.
Ive been asked to explain what this Christmas season has been like to us so far, and at the risk of sounding boring, here goes. Its mostly the same; for me anyway. I guess we have always considered this time of year special and definitely a time to reflect on our family, the year passed and our spiritual relationship with God. So in that sense it hasn't changed. We are trying our best to keep Savy's Christmas experience and upcoming 8th birthday as normal as possible. This has been tough, but I think we have balanced it well so far. She helps make it easier, she's such a precious little girl.
Obviously there is a somber fog hanging over us as we hope and pray each day is good for Cash. That has become easier as Cash has grown stronger, and as the "Life Specialist" says, we get used to the "New normal" for our lives. This could be made easier if he was home, but for now we must have patience, and count the days until he is ready to leave TCH. Savy helps us on those days we are down, making us laugh and distracting us with her little girl stuff. Right now, Brownies and her new pet sugarglider are the talk of most evenings.
If I had to pick one thing that makes this Christmas different, it's pace. Even though our schedules are hectic running around to work, school, the hospital and family events; it seems as though the holiday stuff has slowed down. Maybe its because we don't have as much time to think about gifts, parties etc. We got all of our shopping done weeks ago, and that has been a blessing, with much less stress and last minute stuff that usually gets us flustered.
The last thing I must mention is the continued support we receive from everyone. It is truly humbling to realize folks actually care as much as they do. I receive at least three emails or facebook posts/messages a day from different people. Some from old high school friends or co-workers, neighbors, church friends, family and even some we hardly know. We cannot say thank you enough.
Your kind words, gifts and time are priceless to us and we will never forget them.
Enjoy your holidays, hold tight to your family and kiss your kids goodnight. Slow down, pay more attention and less dollars. Christmas is a beautiful time, make sure you enjoy it. I know we will!
Peace and Love!! Ho Ho Ho!!
2lbs 10oz
14.5 in
Staph infection GONE!!! Woohoo!
19cc feeds x 8 per day
No pda in heart scan (this is good)
Brain scan - stable/no change
Cash has been holding up well. Growing by the day, he is getting stronger and more feisty. He pulled his ventillation tube nearly out the other day! He is "rooting" for more momma milk, but he can't do that since he is intubated. Kimberley is sticking to her daily routine of kangaroo/skin to skin time everyday for at least two hours during a feeding. She amazes me. We now have 4 primary nurses, which is great; hopefully we will get a couple more. Sure makes it easier and less stressful to have nurses familiar with Cash' needs and quirks. Cash has developed some more facial expressions, including the "poop" face and even a small smile. We are so excited to see him hit the 3 lbs mark, then hopefully take another try at going onto the CPAP.
Ive been asked to explain what this Christmas season has been like to us so far, and at the risk of sounding boring, here goes. Its mostly the same; for me anyway. I guess we have always considered this time of year special and definitely a time to reflect on our family, the year passed and our spiritual relationship with God. So in that sense it hasn't changed. We are trying our best to keep Savy's Christmas experience and upcoming 8th birthday as normal as possible. This has been tough, but I think we have balanced it well so far. She helps make it easier, she's such a precious little girl.
Obviously there is a somber fog hanging over us as we hope and pray each day is good for Cash. That has become easier as Cash has grown stronger, and as the "Life Specialist" says, we get used to the "New normal" for our lives. This could be made easier if he was home, but for now we must have patience, and count the days until he is ready to leave TCH. Savy helps us on those days we are down, making us laugh and distracting us with her little girl stuff. Right now, Brownies and her new pet sugarglider are the talk of most evenings.
If I had to pick one thing that makes this Christmas different, it's pace. Even though our schedules are hectic running around to work, school, the hospital and family events; it seems as though the holiday stuff has slowed down. Maybe its because we don't have as much time to think about gifts, parties etc. We got all of our shopping done weeks ago, and that has been a blessing, with much less stress and last minute stuff that usually gets us flustered.
The last thing I must mention is the continued support we receive from everyone. It is truly humbling to realize folks actually care as much as they do. I receive at least three emails or facebook posts/messages a day from different people. Some from old high school friends or co-workers, neighbors, church friends, family and even some we hardly know. We cannot say thank you enough.
Your kind words, gifts and time are priceless to us and we will never forget them.
Enjoy your holidays, hold tight to your family and kiss your kids goodnight. Slow down, pay more attention and less dollars. Christmas is a beautiful time, make sure you enjoy it. I know we will!
Peace and Love!! Ho Ho Ho!!
Friday, December 16, 2011
Wanted: Laughter - Will pay top dollar.
Yesterday was a good day. I should have known it would be a good one at exactly 8:32am. The reason I say this is kind of embarrasing, but here goes. Every morning, well most school day mornings, I drop my daughter Savanah(Savy) off at school. She attends Rosehill Christian School out on FM2920 between Hockley and Tomball. After dropping her off, I take Mueschke Rd to 290, then Fry Rd to Katy where we own a dental practice with two partners. The reason I give so much detail with this is to mention a very sharp, nearly 90 degree turn without a stop sign located about a mile south of 2920 on Mueschke Rd.
It is dangerous, and I've always been extra cautious when I'm taking this curve. Anywho, yesterday the roads were very slick and as I was mid turn a guy coming the other direction going too fast starts to slide in my lane. He didn't hit me, thank the Lord, but came darn close. During the "slow-mo" of the near miss I caught his face. Eyes the size of plates, mouth wide open and the look of fear all over. As we passed and I realized I was safe, I remembered this face and thought it was kinda funny. The kind of funny that most folks would give a quick chuckle about, I now think is hilarious. I am full on laughing hysterically in my truck on the way to work, and laughed off and on over this face for my entire 45 minute drive. I kid you not, I almost pulled over. My gut hurt. I was completely looney over this, and it wouldn't be all that funny to anyone else; but these days, I'm looking for a good laugh.
I think the laughter was my way of letting go of some stress. I mean, the kind of stress my family has been under lately can make you crazy. I'm not talking about the kind of crazy that a rough day or two brings out that a glass of wine can fix. I'm talking about the bat shit crazy kind. Like wearing your sunglasses while you are looking for them, or sitting in a running car in your driveway with your kid in the backseat all dressed for school at 8am and can't remember where you are supposed to go. Or get this, brushing your teeth with a razor. Yep, I almost did it a few days ago. That would have hurt. One last example, I was watching TV and had the program guide up. In the top right corner the current channel still plays, but the rest of the screen is all programs, times, channels etc to chose from. I watched half an episode of The Middle like that last week, and when I came to, and exited out of the guide screen, Savy just simply said, "Thank you." I kid you not, I have done some weird stuff lately. Even weirder than usual, and I am known for having a strange tick or two.
Another thing about laughter, it can make me steaming mad when I hear it. That is not my personality at all. I am the guy always laughing and cracking a joke, but when I hear nurses laughing in the NICU and I'm not in on the joke, I want to grab their necks. What is so damn funny!!!!!! I mean can't you see all these babies holding on by a thread around here? Don't you see all the parents swollen red eyes? Didn't you hear that bell ding? I realize that I am in the wrong here. These nurses are at work just like all of us, and who doesnt need some laughter to get through the day, but when I'm in a bad mood, everyone should be in a bad mood.
Being a parent of a micro-preemie, or a parent of any child with a serious illness or disability is exhausting, and sometimes we just want to scream at everyone for not "getting it". We sometimes cannot understand why the whole world keeps going on like nothing is wrong. "Can't you see my sick child here?!?!?!?!?!?!"
I must say that though this is my thought sometimes, other times its just the opposite. Many times I don't want to keep being reminded about this awful story my family has found themselves in. Ask me how Cash is doing, but then say nothing more after I tell you he is "Hangin' in there".
This is all strange I know. Even unfair. Like the other day when I sat in on the "Cookie meeting" for Savy's Brownie troop. I was the only guy there, which is typical and normally no big deal for me. This time though I'm sitting there thinking about how much Kim wished she was in this meeting, possibly running it. So I start to resent these women. They did nothing to me, in fact just the opposite; many of them have given their prayers, support and even money to help us. I feel like a turd thinking and saying this, and some of these ladies will probably read this then avoid me like the plague. It's my loss, but I have to say all these crazy thoughts I have. To make it clear, these mothers are the good ones, and without them I would lose all faith in humanity. But nevertheless, Im sitting there and cannot even think straight. I'm getting figity, my ears turning red. Why can this cookie sales process not be what it should? This is Savys time to grow, have fun and learn about making a buck. All I can think about is how its not the perfect world scenario.
Nothing is perfect, except children. When I remember that, I laugh hysterically at almost having a wreck.
When I don't, the day sucks. Keep your chin up fellow parents of challenged children and remember one thing: If you think its hard on us, think about how hard it is for them.
It is dangerous, and I've always been extra cautious when I'm taking this curve. Anywho, yesterday the roads were very slick and as I was mid turn a guy coming the other direction going too fast starts to slide in my lane. He didn't hit me, thank the Lord, but came darn close. During the "slow-mo" of the near miss I caught his face. Eyes the size of plates, mouth wide open and the look of fear all over. As we passed and I realized I was safe, I remembered this face and thought it was kinda funny. The kind of funny that most folks would give a quick chuckle about, I now think is hilarious. I am full on laughing hysterically in my truck on the way to work, and laughed off and on over this face for my entire 45 minute drive. I kid you not, I almost pulled over. My gut hurt. I was completely looney over this, and it wouldn't be all that funny to anyone else; but these days, I'm looking for a good laugh.
I think the laughter was my way of letting go of some stress. I mean, the kind of stress my family has been under lately can make you crazy. I'm not talking about the kind of crazy that a rough day or two brings out that a glass of wine can fix. I'm talking about the bat shit crazy kind. Like wearing your sunglasses while you are looking for them, or sitting in a running car in your driveway with your kid in the backseat all dressed for school at 8am and can't remember where you are supposed to go. Or get this, brushing your teeth with a razor. Yep, I almost did it a few days ago. That would have hurt. One last example, I was watching TV and had the program guide up. In the top right corner the current channel still plays, but the rest of the screen is all programs, times, channels etc to chose from. I watched half an episode of The Middle like that last week, and when I came to, and exited out of the guide screen, Savy just simply said, "Thank you." I kid you not, I have done some weird stuff lately. Even weirder than usual, and I am known for having a strange tick or two.
Another thing about laughter, it can make me steaming mad when I hear it. That is not my personality at all. I am the guy always laughing and cracking a joke, but when I hear nurses laughing in the NICU and I'm not in on the joke, I want to grab their necks. What is so damn funny!!!!!! I mean can't you see all these babies holding on by a thread around here? Don't you see all the parents swollen red eyes? Didn't you hear that bell ding? I realize that I am in the wrong here. These nurses are at work just like all of us, and who doesnt need some laughter to get through the day, but when I'm in a bad mood, everyone should be in a bad mood.
Being a parent of a micro-preemie, or a parent of any child with a serious illness or disability is exhausting, and sometimes we just want to scream at everyone for not "getting it". We sometimes cannot understand why the whole world keeps going on like nothing is wrong. "Can't you see my sick child here?!?!?!?!?!?!"
I must say that though this is my thought sometimes, other times its just the opposite. Many times I don't want to keep being reminded about this awful story my family has found themselves in. Ask me how Cash is doing, but then say nothing more after I tell you he is "Hangin' in there".
This is all strange I know. Even unfair. Like the other day when I sat in on the "Cookie meeting" for Savy's Brownie troop. I was the only guy there, which is typical and normally no big deal for me. This time though I'm sitting there thinking about how much Kim wished she was in this meeting, possibly running it. So I start to resent these women. They did nothing to me, in fact just the opposite; many of them have given their prayers, support and even money to help us. I feel like a turd thinking and saying this, and some of these ladies will probably read this then avoid me like the plague. It's my loss, but I have to say all these crazy thoughts I have. To make it clear, these mothers are the good ones, and without them I would lose all faith in humanity. But nevertheless, Im sitting there and cannot even think straight. I'm getting figity, my ears turning red. Why can this cookie sales process not be what it should? This is Savys time to grow, have fun and learn about making a buck. All I can think about is how its not the perfect world scenario.
Nothing is perfect, except children. When I remember that, I laugh hysterically at almost having a wreck.
When I don't, the day sucks. Keep your chin up fellow parents of challenged children and remember one thing: If you think its hard on us, think about how hard it is for them.
Tuesday, December 13, 2011
The Latest
Cash has had a few good days in a row! These are precious times for sure, and very welcome in our household as well.
Here are the basics:
2lbs 6oz
14in long
Blood Gas - 60's
Staph Infection healing nicely
02 Saturation levels more stable recently, between 88-96%
02 being delivered at 35%
Head circumference not a concern, very slightly larger than avg
Brain bleeds, slowing/same as last week
Eyes are wide open
Wavy hair we think
Cash now has linen service being provided by KF Cleaners, with Dreft promotional consideration paid by MF. He also has 2 darn cute hats, one is the strawberry yall have seen in pics. The other is an Owl hat that our front desk lady at Anchor got for him. This thing is the cutest, just a bit too large just yet. Can't wait to snap some pics with it on soon. Cash has the ladies attention with all female nurses. I think he was considering one for prom the other day 'caus he just stared at her. Good taste. Anyhow, his surgery has been postponed indefinitely, as the pressure from the brain bleed does not have Dr. Whitehead concerned just yet.
Learn more about Dr. Whitehead here http://www.texaschildrens.org/findadoctor/displaybio.aspx?person_id=1200
Learn more about TCH here http://health.usnews.com/best-hospitals/texas-children's-hospital-6742018/pediatric-rankings/neurology-and-neurosurgery
Pretty amazing that TCH has 73 of the top doctors rated in the US. Ranked #4 Childrens hospital in the world and ranked top 10 in more than 10 specialties. We are very lucky to be in Houston right now.
Kim has been Wonderwoman as of late, not missing a day with Cash, while keeping up with her work. Savy is still knocking down A's, earning Brownie badges and feeding the pets. Get ready for GS cookie time, its fast approaching! Oh, I almost forgot to mention, we have added another family member recently. A baby sugarglider named Shiner. Savy is digging it. Thanks to the Bier family for getting rid of him. LOL.
Suzy Q, our boxer, has slept through this whole ordeal, as was expected.
I came in 7th place in my fantasy football league. Thank you very little Nitro!
Here are the basics:
2lbs 6oz
14in long
Blood Gas - 60's
Staph Infection healing nicely
02 Saturation levels more stable recently, between 88-96%
02 being delivered at 35%
Head circumference not a concern, very slightly larger than avg
Brain bleeds, slowing/same as last week
Eyes are wide open
Wavy hair we think
Cash now has linen service being provided by KF Cleaners, with Dreft promotional consideration paid by MF. He also has 2 darn cute hats, one is the strawberry yall have seen in pics. The other is an Owl hat that our front desk lady at Anchor got for him. This thing is the cutest, just a bit too large just yet. Can't wait to snap some pics with it on soon. Cash has the ladies attention with all female nurses. I think he was considering one for prom the other day 'caus he just stared at her. Good taste. Anyhow, his surgery has been postponed indefinitely, as the pressure from the brain bleed does not have Dr. Whitehead concerned just yet.
Learn more about Dr. Whitehead here http://www.texaschildrens.org/findadoctor/displaybio.aspx?person_id=1200
Learn more about TCH here http://health.usnews.com/best-hospitals/texas-children's-hospital-6742018/pediatric-rankings/neurology-and-neurosurgery
Pretty amazing that TCH has 73 of the top doctors rated in the US. Ranked #4 Childrens hospital in the world and ranked top 10 in more than 10 specialties. We are very lucky to be in Houston right now.
Kim has been Wonderwoman as of late, not missing a day with Cash, while keeping up with her work. Savy is still knocking down A's, earning Brownie badges and feeding the pets. Get ready for GS cookie time, its fast approaching! Oh, I almost forgot to mention, we have added another family member recently. A baby sugarglider named Shiner. Savy is digging it. Thanks to the Bier family for getting rid of him. LOL.
Suzy Q, our boxer, has slept through this whole ordeal, as was expected.
I came in 7th place in my fantasy football league. Thank you very little Nitro!
Monday, December 12, 2011
Wanna Know What I'm Thinking?
I have been asked countless times, "What are you thinking? How are you doing? What's running through your head?". All fair questions, especially considering that most folks don't really know what to say at all. Sometimes I want to talk about Cash' situation, sometimes I don't. Many times I want to talk about him like there is nothing wrong, excluding hospital stuff or medical terms, other times its all I can focus on. One of my old high school friends, Melissa, outside of being completely supportive has referred me to a friend of hers who is a Neuropsychologist. Her name is Dr. Julia Hannay, and she has ties with some folks down at TCH, has a brother who had a micro preemie birth and gave a speech about his experience.
This speech was very interesting, and gives some great insight as to how a "high-risk parent" copes and feels about this unfortunate position they and their babies are in. Here are some excerpts from the speech, those that I most closely identify with. They explain a lot of my emotions, and should answer those "What are you feeling today?" type of questions.
"I had seen him sleeping in his nest of wires and tubes in the urgent glare of intensive care, watched the jagged green shadow of his pulse on the screen above his crib. When there was nothing more for me to do in the hospital, I went home and dialed a number in Florida. "Oh mama," I said, "I'm so scared."
......And I am scared because the day is drawing closer when he will understand that this is not how life is
meant to be..."
"Will I ever get over this, will I always be afraid". Will I always feel so vulnerable?"
"It seemed like a lot of buck passing was going on. Vicki heard a lot of ,"This is an interesting case. Please
let me know what happens." Vicki hates it when she looks at Ariel and sees symptoms instead of her baby."
"...parents can realize that they can be the only ones in their baby's
life who does not cause pain. We know that the lives of high- risk babies are
filled with pain. Babies have many aversive encounters with doctors and nurses
each day. But parents don't draw blood or put in IVS. Parents can learn to match
a soothing voice with a touch that is always gentle. Your baby will then learn
that you are the good ones. You're unique. You are my parents."
"What do you think happened when a resident decided to impress the Chief
Neonatologist during rounds in front of Lauren and me. Christopher had been
doing beautifully for the last two weeks, and the staff had been full of
confidence- - telling us that he would come home as a normal baby, and because
of that Lauren and I had trust and hope and were beginning to cope OK. Then the
resident says to the Neonatologist that she is going to order a sweat test
because of a large meconium plug when he was born. I'm foolish enough to
ask,"What's a sweat test." And she is impressive enough to tell me all about the
meconium plug syndrome and its relationship to disorders of metabolism, chronic
pulmonary infections, possible biliary cirrhosis, cystic fibrosis, and salty
skin. And suddenly I'm incapable of listening anymore. I'm terrorized, I'm
angry, I feel misled, and I don't trust anyone in the NICU anymore."
"I would like to ask perinatal professionals to acknowledge to high- risk
parents what great jugglers we have become. High- risk- parents must focus on
coping with a series of emergencies or problems to solve. We go through these
times paying close attention to one thing at a time while trying to manage two
or three together things on the back burner. It is juggling practice. We have to
ignore most of the rest of our lives which lie scattered around us. This is
necessary. Otherwise we would drown in our sea of problems. So it is 3 mo. of
bed rest, emergency C- section, Apgar scores, intubation, transport team, mom
gets discharged from the hospital, worries of the other kids, trips to the NICU,
lost 20 gm. yesterday, blood gasses, apnea and bradys, belli lights, extubation,
the breast pump broke, gavage, room air, gained 10 gm., more visits, gained 40
gm., discharge planning, coming home, apnea monitors,- - Many of you know the
story."
"Being a high- risk parent is facing a series of bargains, bargains that
seldom come out even, bargains that we often lose. Bargains like, OK, I'll give
up my dream of what giving birth to a beautiful baby should have been like; as
long as my baby can be healthy and come home at term. Or, " Ok, doctor, I'll
accept the ventilator as long as it will help my baby get better and she doesn't
go blind. Or, "If its that bad, I'll accept the risk of ECMO as long as my baby
might live. I'll accept blindness as long as she can walk, and talk. Or I'll
accept Cerebral Palsy as long as he can just smile. Adjustment for the
high- risk parent means making unacceptable losses acceptable, and adjustment is
never complete. But giving up lost dreams and accepting what we do have is
simply necessary, if we're going to resume living our lives as a family with any
joy."
None of this is all that comforting to those asking the questions, and my intention is not to discourage you from asking. We appreciate the concern, and know that most folks are just speechless. I know I would be.
Many times those who think they know what to say, are wrong; or at the very least may have bad timing. Sometimes, its just a simple, "We are praying for you and Cash" that means the most. Other times its "How are you doing bro?", but be prepared for a long reply. All of this is so confusing to us, I cannot imagine how hard it must be on our friends and family. They want to help. We need their help. But is it the right time, or are they the right ones at the right time. Its unfair to those trying to be so helpful, but as I have learned recently, life aint fair. Don't quit on us, your offers for help will be taken up soon enough!
We cannot express how much we appreciate all of the support we have been given. From watching Savy, to visiting the hospital, an FB post, prayer or a friendly text; you all have been so helpful!
Sometimes its easier to explain by writing, taking the time to put my feelings into words. Other times its just rambling on my neighbors backporch, but both help me to cope and hopefully shed some light on whats running through this thick head I have.
To my mom: I know you are feeling left out. You are not. You know as much about Cash as I do. Your time with Savy in a couple weeks will be precious and perfectly timed. I am sorry for my breakdowns. I am sorry for my temper. I am sorry for ever forgetting to update you. Thank you for being available for us, and we appreciate your concern. You have always been a great mother and grandmother. I need you, we need you. I wish you could kiss this booboo and make it go away. I love you.
This speech was very interesting, and gives some great insight as to how a "high-risk parent" copes and feels about this unfortunate position they and their babies are in. Here are some excerpts from the speech, those that I most closely identify with. They explain a lot of my emotions, and should answer those "What are you feeling today?" type of questions.
"I had seen him sleeping in his nest of wires and tubes in the urgent glare of intensive care, watched the jagged green shadow of his pulse on the screen above his crib. When there was nothing more for me to do in the hospital, I went home and dialed a number in Florida. "Oh mama," I said, "I'm so scared."
......And I am scared because the day is drawing closer when he will understand that this is not how life is
meant to be..."
"Will I ever get over this, will I always be afraid". Will I always feel so vulnerable?"
"It seemed like a lot of buck passing was going on. Vicki heard a lot of ,"This is an interesting case. Please
let me know what happens." Vicki hates it when she looks at Ariel and sees symptoms instead of her baby."
"...parents can realize that they can be the only ones in their baby's
life who does not cause pain. We know that the lives of high- risk babies are
filled with pain. Babies have many aversive encounters with doctors and nurses
each day. But parents don't draw blood or put in IVS. Parents can learn to match
a soothing voice with a touch that is always gentle. Your baby will then learn
that you are the good ones. You're unique. You are my parents."
"What do you think happened when a resident decided to impress the Chief
Neonatologist during rounds in front of Lauren and me. Christopher had been
doing beautifully for the last two weeks, and the staff had been full of
confidence- - telling us that he would come home as a normal baby, and because
of that Lauren and I had trust and hope and were beginning to cope OK. Then the
resident says to the Neonatologist that she is going to order a sweat test
because of a large meconium plug when he was born. I'm foolish enough to
ask,"What's a sweat test." And she is impressive enough to tell me all about the
meconium plug syndrome and its relationship to disorders of metabolism, chronic
pulmonary infections, possible biliary cirrhosis, cystic fibrosis, and salty
skin. And suddenly I'm incapable of listening anymore. I'm terrorized, I'm
angry, I feel misled, and I don't trust anyone in the NICU anymore."
"I would like to ask perinatal professionals to acknowledge to high- risk
parents what great jugglers we have become. High- risk- parents must focus on
coping with a series of emergencies or problems to solve. We go through these
times paying close attention to one thing at a time while trying to manage two
or three together things on the back burner. It is juggling practice. We have to
ignore most of the rest of our lives which lie scattered around us. This is
necessary. Otherwise we would drown in our sea of problems. So it is 3 mo. of
bed rest, emergency C- section, Apgar scores, intubation, transport team, mom
gets discharged from the hospital, worries of the other kids, trips to the NICU,
lost 20 gm. yesterday, blood gasses, apnea and bradys, belli lights, extubation,
the breast pump broke, gavage, room air, gained 10 gm., more visits, gained 40
gm., discharge planning, coming home, apnea monitors,- - Many of you know the
story."
"Being a high- risk parent is facing a series of bargains, bargains that
seldom come out even, bargains that we often lose. Bargains like, OK, I'll give
up my dream of what giving birth to a beautiful baby should have been like; as
long as my baby can be healthy and come home at term. Or, " Ok, doctor, I'll
accept the ventilator as long as it will help my baby get better and she doesn't
go blind. Or, "If its that bad, I'll accept the risk of ECMO as long as my baby
might live. I'll accept blindness as long as she can walk, and talk. Or I'll
accept Cerebral Palsy as long as he can just smile. Adjustment for the
high- risk parent means making unacceptable losses acceptable, and adjustment is
never complete. But giving up lost dreams and accepting what we do have is
simply necessary, if we're going to resume living our lives as a family with any
joy."
None of this is all that comforting to those asking the questions, and my intention is not to discourage you from asking. We appreciate the concern, and know that most folks are just speechless. I know I would be.
Many times those who think they know what to say, are wrong; or at the very least may have bad timing. Sometimes, its just a simple, "We are praying for you and Cash" that means the most. Other times its "How are you doing bro?", but be prepared for a long reply. All of this is so confusing to us, I cannot imagine how hard it must be on our friends and family. They want to help. We need their help. But is it the right time, or are they the right ones at the right time. Its unfair to those trying to be so helpful, but as I have learned recently, life aint fair. Don't quit on us, your offers for help will be taken up soon enough!
We cannot express how much we appreciate all of the support we have been given. From watching Savy, to visiting the hospital, an FB post, prayer or a friendly text; you all have been so helpful!
Sometimes its easier to explain by writing, taking the time to put my feelings into words. Other times its just rambling on my neighbors backporch, but both help me to cope and hopefully shed some light on whats running through this thick head I have.
To my mom: I know you are feeling left out. You are not. You know as much about Cash as I do. Your time with Savy in a couple weeks will be precious and perfectly timed. I am sorry for my breakdowns. I am sorry for my temper. I am sorry for ever forgetting to update you. Thank you for being available for us, and we appreciate your concern. You have always been a great mother and grandmother. I need you, we need you. I wish you could kiss this booboo and make it go away. I love you.
Wednesday, December 7, 2011
Our Heads Are Spinning...
This last week has been a bunch of ups and downs. The first few days were great, he was eating well, had good o2 numbers and rarely any scares. Then on Monday, Cash had his weekly brain scan. All heck broke loose. I had already gotten home with Savy when Kim called crying. She had reviewed the x-ray with the doc and his brain bleed had grown approximately 350%. She was devestated. Nearly one whole side of his brain was black, meaning full of blood. The ventricle had essentially exploded/leaked blood and spinal fluid all around his right side. The left side had gotten a little better. We decided to sleep on it, and both go back on Tuesday to discuss with the Neurosurgeon.
Tuesday got worse. Now we are being told about Shunts(a tube that runs under the skin from the brain down the neck into the stomach that would be there permanantly.) Severe brain damage was mentioned. We were also told they see lots of scans and this scan was "significant". My son would have a tube in his body his whole life. Long term mental issues, deficiencies of all kinds etc etc. These are for a lifetime. Now our 4 month stay seemed easy. We never were able to speak with the Nuerosurgeon.
We cried, and cried. I hid in a construction zone at the hospital to let it out. Kim cried during skin to skin time, but managed to smile some of the way through it while looking at him. She always feels best when he is sleeping on her, and he does as well. We were going to have a lifelong commitment to treatment, both physically and emotionally to a child who may need round the clock care, nurses etc. We were thinking, and told about the worst. Cerebal Palsy, Chronic Ventriculomegaly and Perinatal Intraventricular Hemorrhage were the words of the day. Brain surgery was being discussed. Tuesday night was rough, and we tried to give more details to Savy. She, thankfully, couldnt wait to get back to the Disney channel. Late that night we are told surgery would not take place yet, due to size. We didn't know how to act or what to think.
Today came at 5am and we both agreed to try and make the day the best possible. After laying in bed talking about these developments for two hours, we took Savy to school and met with Pastor Webb at church. He is a smart man, and has a kind of old school way about him, allowing for a strong but tender emotional support for us, and never saying too much. Its interesting to see how a guy who says the exact amount of words; not too much or too little manages to still convey a deep message. We left with our hearts and spirits lifted, ready to take on whatever came Cash' way.
The visit today included an appearance but my brother Gerald and his sweet wife Rachel. They came in on their only day to shop for their own kids, and met their little nephew. Kim did skin to skin and Cash was very stable. Sweet as always, he looked at us and sucked his thumb a little. We just couldn't wrap our heads around the previous days news, he is always so responsive and reactive to his surroundings. We listened to the "rounds" with the doctors, reviewed his vitals, hernia, and now some sort of rash, but the brain bleeds were weighing heavily on our minds. I sent Gerald and Rachel on their way and while I was gone the Neurosurgeon, Dr. Whitehead, met with Kim.
So I come back and Kim, still holding Cash, immediately starts in about her chat. Lots of medical stuff here, but here is the lay persons short explanation. He is very small, but the primary reason he didn't want to do surgery, yet, was because he didn't see or feel (yes...he squeezes Cash' head and can make determinations by the way it feels) any pressure on his frontal lobe. This is not too say there will not be a surgery in the future, but for now, none. He even thought that Cash' head was actually doing what it should be doing. I was speechless, I mean pardon my French but WTF! My emotions are freaking out! One day its the worst, the next its not great, but all is working the way it should? Jeesh. Kim told him what the doctors told us the day before and she described his response as "taken back". He seemed to have thought they were premature with these sorts of talks. He did say that that was their territory, but that he didnt feel we were at that point.
Moral of the story: We are friggin' exhausted, and I'm going to pray Dr. Whitehead is correct. Who knows, but at this point I'll take every glimmer of hope and good news and hang on to that harder than Ty Murray cinched up on ol' Rusty; know what I'm sayin"? Can you feel me?
Tuesday got worse. Now we are being told about Shunts(a tube that runs under the skin from the brain down the neck into the stomach that would be there permanantly.) Severe brain damage was mentioned. We were also told they see lots of scans and this scan was "significant". My son would have a tube in his body his whole life. Long term mental issues, deficiencies of all kinds etc etc. These are for a lifetime. Now our 4 month stay seemed easy. We never were able to speak with the Nuerosurgeon.
We cried, and cried. I hid in a construction zone at the hospital to let it out. Kim cried during skin to skin time, but managed to smile some of the way through it while looking at him. She always feels best when he is sleeping on her, and he does as well. We were going to have a lifelong commitment to treatment, both physically and emotionally to a child who may need round the clock care, nurses etc. We were thinking, and told about the worst. Cerebal Palsy, Chronic Ventriculomegaly and Perinatal Intraventricular Hemorrhage were the words of the day. Brain surgery was being discussed. Tuesday night was rough, and we tried to give more details to Savy. She, thankfully, couldnt wait to get back to the Disney channel. Late that night we are told surgery would not take place yet, due to size. We didn't know how to act or what to think.
Today came at 5am and we both agreed to try and make the day the best possible. After laying in bed talking about these developments for two hours, we took Savy to school and met with Pastor Webb at church. He is a smart man, and has a kind of old school way about him, allowing for a strong but tender emotional support for us, and never saying too much. Its interesting to see how a guy who says the exact amount of words; not too much or too little manages to still convey a deep message. We left with our hearts and spirits lifted, ready to take on whatever came Cash' way.
The visit today included an appearance but my brother Gerald and his sweet wife Rachel. They came in on their only day to shop for their own kids, and met their little nephew. Kim did skin to skin and Cash was very stable. Sweet as always, he looked at us and sucked his thumb a little. We just couldn't wrap our heads around the previous days news, he is always so responsive and reactive to his surroundings. We listened to the "rounds" with the doctors, reviewed his vitals, hernia, and now some sort of rash, but the brain bleeds were weighing heavily on our minds. I sent Gerald and Rachel on their way and while I was gone the Neurosurgeon, Dr. Whitehead, met with Kim.
So I come back and Kim, still holding Cash, immediately starts in about her chat. Lots of medical stuff here, but here is the lay persons short explanation. He is very small, but the primary reason he didn't want to do surgery, yet, was because he didn't see or feel (yes...he squeezes Cash' head and can make determinations by the way it feels) any pressure on his frontal lobe. This is not too say there will not be a surgery in the future, but for now, none. He even thought that Cash' head was actually doing what it should be doing. I was speechless, I mean pardon my French but WTF! My emotions are freaking out! One day its the worst, the next its not great, but all is working the way it should? Jeesh. Kim told him what the doctors told us the day before and she described his response as "taken back". He seemed to have thought they were premature with these sorts of talks. He did say that that was their territory, but that he didnt feel we were at that point.
Moral of the story: We are friggin' exhausted, and I'm going to pray Dr. Whitehead is correct. Who knows, but at this point I'll take every glimmer of hope and good news and hang on to that harder than Ty Murray cinched up on ol' Rusty; know what I'm sayin"? Can you feel me?
Thursday, December 1, 2011
12/1/11
12/1/11
Thumbsucking, paci sucking, skin to skin/Kangaroo time-all in a weeks work.
This last week has flewn by and I'm sorry for my failure to update as often as in the past.
So he is up to 14in and weighs 1lbs 13oz. Cash has been doing pretty well, and his o2 levels are getting fine tuned, so that they can begin weening him off the ventilator. Hopefully when he hits 2 lbs they can get him on the cpap.
No new news on the brain bleeds just yet, but another test is scheduled on Dec 5.
He has had many visitors, including Pastor Webb who is with him right now. We are very lucky to have found our church and thank God for their support throughout this ordeal.
Cash likes to eat. He is up to 14cc's, which is quite an increase over the last 2 weeks. This is a great thing, since size will help him fight infection, grow his lungs and provide some more muscle and fat to keep his temp steady.
We are starting to develop relationships with some of the nurses, and even have a couple who are now assigned to him when they are working. This is nice, it helps us to communicate our needs as well as hear an accurate update when we call.
Kim has been doing great, slowly getting back to work, and still visiting Cash everyday. Savy is a busy bee with her church program rehearsals and songs, school and of course Girl Scouts. They are planning on going to see A Christmas Carol at Alley Theater and having a fancy dinner all dressed up. This sounds perfect, as I will be watching UFC. No need to rock the boat of normalcy around here.
Kims 36th b-day is on Dec 14th, and we got her all the necessaries for a scrap-book for Cash. She loved it. We gave it to her so she could start on it now. Christmas is next, then Savys 8th b-day 12/29. A busy month for sure. Our neighbor is taking us hunting and Savy is freakin' out of her mind excited. She loves to sit with me in the morning all quiet looking at nature. I'm thinking I'm going to "miss" if we see a deer, just so I don't have to clean and process anything. Just spending time with her will be good enough for me.
I'll try and get some more pics of Cash up here soon.
I must give a shout out to some more folks...thanks again everyone, yall are/have helped so much.
Dawn/Mike Bier and Family
The Peanut Gallery Sunday School Class
Pastor Webb
The Kellum Family
The Thomas Family
Hope everyones holidays have been great so far!
Peace Out!
MF
This last week has flewn by and I'm sorry for my failure to update as often as in the past.
So he is up to 14in and weighs 1lbs 13oz. Cash has been doing pretty well, and his o2 levels are getting fine tuned, so that they can begin weening him off the ventilator. Hopefully when he hits 2 lbs they can get him on the cpap.
No new news on the brain bleeds just yet, but another test is scheduled on Dec 5.
He has had many visitors, including Pastor Webb who is with him right now. We are very lucky to have found our church and thank God for their support throughout this ordeal.
Cash likes to eat. He is up to 14cc's, which is quite an increase over the last 2 weeks. This is a great thing, since size will help him fight infection, grow his lungs and provide some more muscle and fat to keep his temp steady.
We are starting to develop relationships with some of the nurses, and even have a couple who are now assigned to him when they are working. This is nice, it helps us to communicate our needs as well as hear an accurate update when we call.
Kim has been doing great, slowly getting back to work, and still visiting Cash everyday. Savy is a busy bee with her church program rehearsals and songs, school and of course Girl Scouts. They are planning on going to see A Christmas Carol at Alley Theater and having a fancy dinner all dressed up. This sounds perfect, as I will be watching UFC. No need to rock the boat of normalcy around here.
Kims 36th b-day is on Dec 14th, and we got her all the necessaries for a scrap-book for Cash. She loved it. We gave it to her so she could start on it now. Christmas is next, then Savys 8th b-day 12/29. A busy month for sure. Our neighbor is taking us hunting and Savy is freakin' out of her mind excited. She loves to sit with me in the morning all quiet looking at nature. I'm thinking I'm going to "miss" if we see a deer, just so I don't have to clean and process anything. Just spending time with her will be good enough for me.
I'll try and get some more pics of Cash up here soon.
I must give a shout out to some more folks...thanks again everyone, yall are/have helped so much.
Dawn/Mike Bier and Family
The Peanut Gallery Sunday School Class
Pastor Webb
The Kellum Family
The Thomas Family
Hope everyones holidays have been great so far!
Peace Out!
MF
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