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
Monday, November 28, 2011
Cash Learned To Suck His ThumbToday!
Well that little booger was a sweetie today! He gave his mommy 2 hours of Kangaroo time(skin to skin) and showed off his latest skill, sucking his thumb. As an added bonus she was delighted to be peed on, not once but twice! We are getting a new doctor. Each month the rotation changes and this will be our first female. He is precious to watch sleep, and it seems he is getting better quality sleep these days.
Savy is back in school, excited to see her friends and attend her Brownie meeting. I dropped by Anchor Dental to check on the biz, and visited Cash as well. I also spoke with an old friend, who as usual lended a good ear.
Today was a good day!
Savy is back in school, excited to see her friends and attend her Brownie meeting. I dropped by Anchor Dental to check on the biz, and visited Cash as well. I also spoke with an old friend, who as usual lended a good ear.
Today was a good day!
Saturday, November 26, 2011
11/26/11
Cash has been doing mostly pretty well the last few days. They tried the CPAP this morning but after just 90 minutes they re-intubated him on the ventilator. This is a set back for sure, but we hope that when he gains some more weight and gets a little stronger we can have a successful change in the coming weeks. He is eating 12.5cc's now, and for the most part has stayed pretty stable. We keep hoping for a major improvement but these things move very slowly. His brain bleed has not gotten worse but is "leaking", causing some minor damage that the doctor says won't be seen until he is older. Also that the damage if not severe, can many times be made up for with other parts of the brain especially since he still developing and so young.
We have fallen for this little guy. He is such a fighter, and has had to be so tough. His big sister continues to read, makes pictures for and writes notes to him that we will always keep. Kim is stressed but hanging in there.
Keep praying, we have a very long road.
We have fallen for this little guy. He is such a fighter, and has had to be so tough. His big sister continues to read, makes pictures for and writes notes to him that we will always keep. Kim is stressed but hanging in there.
Keep praying, we have a very long road.
Wednesday, November 23, 2011
You Dont Know...
You don't know pain, til you see your child in it
You don't know sorrow, til you see your wife live it
You don't know helplessness, til you realize you have it
You don't know love, til your child shows it
You don't know strength, til your baby uses it
You don't know prayer, til on you're knees and feel it
You don't know kindness, til you receive it
You don't know desperation, til you beg to forget it
You don't know family, til you need it
You don't know beauty, til you touch it
You don't know commitment, til you've tested it
You dont know a miracle, til you have seen it.
Sleep tight baby Cash. Momma, Sister and Daddy will see you tomorrow.
You don't know sorrow, til you see your wife live it
You don't know helplessness, til you realize you have it
You don't know love, til your child shows it
You don't know strength, til your baby uses it
You don't know prayer, til on you're knees and feel it
You don't know kindness, til you receive it
You don't know desperation, til you beg to forget it
You don't know family, til you need it
You don't know beauty, til you touch it
You don't know commitment, til you've tested it
You dont know a miracle, til you have seen it.
Sleep tight baby Cash. Momma, Sister and Daddy will see you tomorrow.
Tuesday, November 22, 2011
Things To Be Thankful For
I'm going to start off with a quick Cash Flash. He is doing tremendously well! His IV and PICC lines have been removed and his feedings are up to 10cc's! Cash is gaining weight, and looks good! We are blessed!
Things To Be Thankful For
Baby Cash
His health
Our health
The many prayers for Cash
The many prayers for us
That they are continuously being answered
Family
Friends
Those who don't know us who continue to pray and ask how we are
Unexplained and surprise dinners, notes of encouragement, emails, FB posts and "Likes" and gifts
The doctors, nurses and TCH staff
Our staff, clients and others who have given more, provided flexibility and stayed with us
Our first time to hold Cash
You!
Happy Thanksgiving Everyone! Kiss your significant other and tuck your kids in this weekend, even if they are older. Say a prayer with and for a loved one, and cherish your time with family these next few days.
Love,
The Franek Family
Things To Be Thankful For
Baby Cash
His health
Our health
The many prayers for Cash
The many prayers for us
That they are continuously being answered
Family
Friends
Those who don't know us who continue to pray and ask how we are
Unexplained and surprise dinners, notes of encouragement, emails, FB posts and "Likes" and gifts
The doctors, nurses and TCH staff
Our staff, clients and others who have given more, provided flexibility and stayed with us
Our first time to hold Cash
You!
Happy Thanksgiving Everyone! Kiss your significant other and tuck your kids in this weekend, even if they are older. Say a prayer with and for a loved one, and cherish your time with family these next few days.
Love,
The Franek Family
Friday, November 18, 2011
Cash Flash 11/18/11
I saw Cash yesterday, while Kim was working and he is doing great! No Bradys yesterday!!! WoooHooo! His color is good, and his feedings are being raised twice a day. He is up to 5 cc's now. When he gets strong enough, hopefully in the next couple days they will remove his IV, which reduces the chance for infection.
Kim and I are doing christmas shopping today while we have the time and to assure we dont forget!
The Sustala's(neighbors) brought over an awesome dinner yesterday, and we cannot thank them enough. We were probably half way finished before Tommy even got back to his front door. Thanks again to all those helping!
We look forward to seeing my old friend Todd Cooper tomorrow, along with our new friend, his beautiful wife shelly who is 6 months preggo! They will get to see Cash for the first time, and a baby the size of the one still cooking in her! Should be a great visit.
I also want to thank my sweet cousin Merry for visiting yesterday. She has a great calm about her, which was handy while I was there by myself. Thank you Merry for being you!
Love to you all, til next time; keep up the prayers!
Matthew
Kim and I are doing christmas shopping today while we have the time and to assure we dont forget!
The Sustala's(neighbors) brought over an awesome dinner yesterday, and we cannot thank them enough. We were probably half way finished before Tommy even got back to his front door. Thanks again to all those helping!
We look forward to seeing my old friend Todd Cooper tomorrow, along with our new friend, his beautiful wife shelly who is 6 months preggo! They will get to see Cash for the first time, and a baby the size of the one still cooking in her! Should be a great visit.
I also want to thank my sweet cousin Merry for visiting yesterday. She has a great calm about her, which was handy while I was there by myself. Thank you Merry for being you!
Love to you all, til next time; keep up the prayers!
Matthew
Thursday, November 17, 2011
Cash Flash Update 11/17/11
Well we have made it two weeks since Little Man Cash decided to surprise us early. He has been progressing well, and by all accounts is right on schedule. Its still touch and go however, with Brady's still everyday, we are on edge. What is a Brady? (These things scare the you know what out of us.)
He is getting caffeine, IV and a blood transfusion every couple of days. His ventilator is set very low(which is good) and we hope to have him on the CPAP in a week or so. His feedings are going very well! From .5cc's up to 3.6cc's now! 5 cc's is equal to a teaspoon, so he is eating less than that right now, amazing isn't it? When the feedings get to 120cc's per day they will remove the IV, which is currently running into a vein in his head. Its so sad to see a little baby all hooked up to this stuff, but we have to remind ourselves its for the best.
Savy is doing great, and keeping her school work up. Her classmates are amazing, sending little notes and pictures they draw for Cash. One of my favorite things to see is when Savy is reading to Cash, or holding his hand. It is amazing to see the interaction between syblings, even through the port hole of an intubator.
Kimberley is hanging in there. She is so strong, and for the first few days, definitely held me together. I was a basket case. Now the tables have turned a little, as the stress, and everyday life is mounting on Kims shoulders. Today is the first day she won't see Cash at the hospital. She had to go see a great friend and client in Copperas Cove for her monthly work visit. While I am at it, thank you very much for the flexibility and understanding by those clients who have stood by us with prayers and support the last couple weeks. To those of you who didn't, shame on you.
Kim has been staying with Cash about 5 hours a day, driving 2+ hrs each day plus pumping 8 times a day for 30 minutes each time, so she is a busy woman. Ive been visiting Anchor and making sure things are organized and remain pointed in the right direction. Thank you very much to our staff who have carried some extra responsibility over the last weeks, we truly appreciate your dedication. By the way, we need more biz at Anchor in Katy, and theres plenty of availability through the end of the year, so if you need dental care, please let us know. 281-392-1715 to schedule. Shameless plug, sorry. Ok, back to my schedule. Im shuttling Savy around, helping Kim when I can, visiting Cash on most days, and trying to get Savy to see him at least 3 times a week. I remain the chef of the house, so to everyone who has brought food, THANK YOU! You are allowing me to spend time with Savy and getting her homework done. We currently have about 2 weeks worth of dinners in the fridge, but when we drop below the 7 day mark I'll let you all know.
There have been so many of you offering help, its really amazing to hear. We will definitely let you know when we can use your help, its coming, we have just been blessed with great family helping to this point.
I'm going to post some new pics now, hopefully they fit down below here. We shall see.
Sweet! I figured it out! the top one we call "Peek-a-boo", the bottom is Savy reading to Cash while he is on his little belly.
Anywho, thanks again for all your support we've really needed it, and will continue to.
I heard a line in a song yesterday that rings true for us, and I'm sure will for you as well.
"We are all just one phone call away from our knees"
Remember that this Thanksgiving season and make sure God knows just how thankful you are.
God Bless Everyone!
He is getting caffeine, IV and a blood transfusion every couple of days. His ventilator is set very low(which is good) and we hope to have him on the CPAP in a week or so. His feedings are going very well! From .5cc's up to 3.6cc's now! 5 cc's is equal to a teaspoon, so he is eating less than that right now, amazing isn't it? When the feedings get to 120cc's per day they will remove the IV, which is currently running into a vein in his head. Its so sad to see a little baby all hooked up to this stuff, but we have to remind ourselves its for the best.
Savy is doing great, and keeping her school work up. Her classmates are amazing, sending little notes and pictures they draw for Cash. One of my favorite things to see is when Savy is reading to Cash, or holding his hand. It is amazing to see the interaction between syblings, even through the port hole of an intubator.
Kimberley is hanging in there. She is so strong, and for the first few days, definitely held me together. I was a basket case. Now the tables have turned a little, as the stress, and everyday life is mounting on Kims shoulders. Today is the first day she won't see Cash at the hospital. She had to go see a great friend and client in Copperas Cove for her monthly work visit. While I am at it, thank you very much for the flexibility and understanding by those clients who have stood by us with prayers and support the last couple weeks. To those of you who didn't, shame on you.
Kim has been staying with Cash about 5 hours a day, driving 2+ hrs each day plus pumping 8 times a day for 30 minutes each time, so she is a busy woman. Ive been visiting Anchor and making sure things are organized and remain pointed in the right direction. Thank you very much to our staff who have carried some extra responsibility over the last weeks, we truly appreciate your dedication. By the way, we need more biz at Anchor in Katy, and theres plenty of availability through the end of the year, so if you need dental care, please let us know. 281-392-1715 to schedule. Shameless plug, sorry. Ok, back to my schedule. Im shuttling Savy around, helping Kim when I can, visiting Cash on most days, and trying to get Savy to see him at least 3 times a week. I remain the chef of the house, so to everyone who has brought food, THANK YOU! You are allowing me to spend time with Savy and getting her homework done. We currently have about 2 weeks worth of dinners in the fridge, but when we drop below the 7 day mark I'll let you all know.
There have been so many of you offering help, its really amazing to hear. We will definitely let you know when we can use your help, its coming, we have just been blessed with great family helping to this point.
I'm going to post some new pics now, hopefully they fit down below here. We shall see.
Sweet! I figured it out! the top one we call "Peek-a-boo", the bottom is Savy reading to Cash while he is on his little belly.
Anywho, thanks again for all your support we've really needed it, and will continue to.
I heard a line in a song yesterday that rings true for us, and I'm sure will for you as well.
"We are all just one phone call away from our knees"
Remember that this Thanksgiving season and make sure God knows just how thankful you are.
God Bless Everyone!
Monday, November 14, 2011
Poem For Cash - From Uncle G
My brother gerald wrote a great poem for Cash. It defines a lot of what we experienced as kids, and the hopes we have for our own. For those of you that know Gerald, this will affirm your beliefs about him; for those who don't, welcome to G's viewpoint. I love it, and will cherish it. Can't wait for Cash to do all the things his uncle mentions. Thanks G, this means a lot to us!
As a quick side note, the players in the story are G=Gerald, Capt A=Ross Anderson(my cousin), Dillon and Peyton=G's kids, Cash' cousins, Taiton=Old dancehall near El Campo, Pringle is a fishing hole.
He couldn’t wait any longer, tired of missin’ all the fun,
As a quick side note, the players in the story are G=Gerald, Capt A=Ross Anderson(my cousin), Dillon and Peyton=G's kids, Cash' cousins, Taiton=Old dancehall near El Campo, Pringle is a fishing hole.
He couldn’t wait any longer, tired of missin’ all the fun,
Like at 4am, heatin’ up dad’s truck, camoed up and holdin’ a gun.
Cookin’ a new dish for his mama, he learned from Uncle G.
Being tested by Capt. A, while fishin’ at sea.
Makin granny shed a tear, cause he finally tied his shoes,
Drinkin’ coffee with his popo, while watchin’ fox news.
Gettin’ his first kiss from a girl that he met from Dillon and Peyton,
After loadin’ up three farmer’s daughters, plum-drunk at a dance in Taiton.
But they won’t let down Capt. G, still buzzin’ from the night before.
Learnin’ from the best, at fishin’ the Pringle Shore.
So hang in there little buddy, we’ve got memories to hoard,
Sunday, November 13, 2011
Cash Flash: Update 4
Kimberley was able to change Cash' diaper today! All vitals remain stabile and his BP has maintained a good pressure even without Dopamine. His uncle Louis and aunts Cheryl and Laura Beth visited as well.
His little eyes continue to get closer to opening and his eyelashes are sooo long. Maybe he will get lucky and get his daddy's baby blues! We received a prayer blanket from some ladies from Rosehill Methodist Church. Beautiful and thoughtful. Thanks everyone for the prayers!
His little eyes continue to get closer to opening and his eyelashes are sooo long. Maybe he will get lucky and get his daddy's baby blues! We received a prayer blanket from some ladies from Rosehill Methodist Church. Beautiful and thoughtful. Thanks everyone for the prayers!
Saturday, November 12, 2011
Cash Flash Update 3
Cash has been doing great! His vitals have remained good and he is being feed .75cc per feeding now. His jaundice is gone, and his hair is dark! His little eyes are starting to open up, and we cannot wait to see them. He knows all about hunting now, and is being taught about Jesus by his sister Savy when she reads Bible stories to him. His tummy is all better, and his brain bleeds have not gotten worse!! The doc says he thinks the bleeds will be reabsorbed over the next couple weeks. Fingers crossed. Thank you all so much for the prayers. In particular I wanted to say thank you to the following folks for going beyond the call of duty.
Louis Franek - Brother
Michelle Jeffers - Cousin
Mom, Dad
Patrck Schilhab- Father In Law
Laura Beth, Cheryl - Kims Sisters
Amanda Peyton-Rutt - HS Friend
Todd/Shelly Cooper - Kappa Sigma
Sarah and Lonnie Thomas - Friend
The Kostak and Webster Families - Friends
Deana Lara - Friend
Christy and Brian Johnson - Friends (Pray for their precious little girl as well, she has been fighting cancer and is on the home stretch to winning the war!)
Rosehill Methodist Church and Rosehill Christian School
Anchor Dental Staff
You all have no idea how much easier you have made this tough time and I know you will continue to be there in the future.
Thank You!
--More news--
Just got off the phone with Kimberley! More blessings!!! Cash has eaten 3 times today with no issues, and is off Dopamine!! So his BP is almost as awesome as he is!!
Thank You Lord!
Louis Franek - Brother
Michelle Jeffers - Cousin
Mom, Dad
Patrck Schilhab- Father In Law
Laura Beth, Cheryl - Kims Sisters
Amanda Peyton-Rutt - HS Friend
Todd/Shelly Cooper - Kappa Sigma
Sarah and Lonnie Thomas - Friend
The Kostak and Webster Families - Friends
Deana Lara - Friend
Christy and Brian Johnson - Friends (Pray for their precious little girl as well, she has been fighting cancer and is on the home stretch to winning the war!)
Rosehill Methodist Church and Rosehill Christian School
Anchor Dental Staff
You all have no idea how much easier you have made this tough time and I know you will continue to be there in the future.
Thank You!
--More news--
Just got off the phone with Kimberley! More blessings!!! Cash has eaten 3 times today with no issues, and is off Dopamine!! So his BP is almost as awesome as he is!!
Thank You Lord!
Letter To Savy
11/12/11
Dear Savy,
You are just shy of your 8th birthday, an excellent student and second grader at Rosehill Christian School and a joy to everyone around you. You love pink, furry dolls and play teacher all the time. You don't mind getting your hands dirty, enjoy the outdoors and even sitting in a deer blind with your daddy. Your momma and I could not be more proud of you.
I am writing you so that you can read this when you are older, and get a sense of just how much love you have given to your daddy, momma and baby brother.
On 11/3/11, momma had Cash unexpectedly. He was 4 months early, but we have been waiting on him since we had you. We all were to have a long road to getting him home and could never have been prepared for the difficulties and trials we would face to do so. In the first few days since he was born, you have been an angel, and I think its just a glimpse of what is to come as you grow older.
The night Cash was born, our first concern was for his and momma's safety, but we quickly realized that you could not be forgotten, so we called on your uncles Louis and Marty to take care of you for the night, get you ready for the next day and keep you from dealing with the emergency in the delivery room. They did an excellent job, though by all accounts you were a trooper, even not complaining about your accomodations on the floor. Thank you. We needed to focus on Cash for the night.
That next morning we decided to skip school and bring you to the hospital where momma was. Both of you needed each other. I was on my way home from TCH when you arrived to see momma, but your smiling face gave your uncle and momma a sigh of relief. I wish I could have seen you do your "little brother" dance when she told you Cash was here.
Since Cash has been born, you have kept up your studies, hugged us when we needed it, and made us laugh more than we thought we could in this difficult time. We always wondered why we were blessed with such a smart, fun, happy and responsible little girl and now we know. God gave us you, the perfect child to help us through this test he had planned for us. You even passed on a birthday party that "everyone" was going to, so you could be with your baby brother and mommy. You said, "Momma, its cool, there will be lots of birthday parties I can go to, but how many times will I get to spend the day with you and read to baby Cash?!" I swear, we were stunned to hear that this morning.
And when you asked about Rice University while we drove through the village, you were so matter of fact in your answer as to how hard it is to get into the school, "Straight A's huh, I can do that; I'm going to write my own ticket." Amazing.
Savanah Grace, your middle name defines your mother, and it is proving to be a great choice for you as well. Your strength, happy demeanor and clever thoughts never cease to amaze us. We are so blessed to have such a beautiful, sweet and intelligent little girl. Cash will definitely learn how lucky he is one day, when he sees the videos and pictures of you reading bible stories to him while he grew stronger. Your selfless acts of kindness, from folding clothes to skipping birthdays and even doing homework late at night so we could visit your little brother, prove to us that you truly understand the situation we are in and the title of big sister.
We also are impressed by your complete devotion to your Christian beliefs. We have done our best to pass along the love of the Lord we have, but your understanding and acceptance of Jesus is precious to see. Your nightly prayers at the dinner table with us, your encouraging words to go to church when we didn't hop out of bed to do so and your charitable attitude are a blessing. We also cannot wait to see you play Mary in this years Christmas play at Rosehill Methodist Church.
I also wanted to tell you how much you remind me of your mother. Smart, quick, fair, firm and hard working are all traits she gave you. I give you the funny faces and goofy antics, some creativity and your love for music, but momma gives you all the stuff that matters most. You are lucky to have such a great role model, and you are following in her footsteps well. You will be successful in anything you do, and you will make many friends along the way. You also look a lot like your momma, and thats a great thing. Your beautiful eyes, thick wavy hair, flawless skin all come from her. I gave you left handedness and a temper. I'm sorry.
Last, I wanted you to know how loved you are, and by so many. Your grandparents, uncles, aunts and cousins love you dearly. Your teachers and friends hug you with love. The phone calls we get about some comment you made never end or dissapoint, and they always tell us about some sweet nothing you did recently. That is saying something. Thank you so much for what you have given to us and Cash, we will need more in the months that come.
In closing: Never lose your zeal for life, and always go head on into something you believe in. Keep your faith and never give cause for another to doubt your word. Always be an example of someone walking in the light, and never dishonor your family. God and family are first. Smile. Help. Love.
You will never know how much you mean to us, and you will always be our baby girl. You are a big sister, the oldest child and grandchild on both sides of the family. You will need big shoulders for your responsibilities, but you have proven perfect for the job.
I love you Savy G, and am forever indebted to you.
Love Always,
Daddy
Dear Savy,
You are just shy of your 8th birthday, an excellent student and second grader at Rosehill Christian School and a joy to everyone around you. You love pink, furry dolls and play teacher all the time. You don't mind getting your hands dirty, enjoy the outdoors and even sitting in a deer blind with your daddy. Your momma and I could not be more proud of you.
I am writing you so that you can read this when you are older, and get a sense of just how much love you have given to your daddy, momma and baby brother.
On 11/3/11, momma had Cash unexpectedly. He was 4 months early, but we have been waiting on him since we had you. We all were to have a long road to getting him home and could never have been prepared for the difficulties and trials we would face to do so. In the first few days since he was born, you have been an angel, and I think its just a glimpse of what is to come as you grow older.
The night Cash was born, our first concern was for his and momma's safety, but we quickly realized that you could not be forgotten, so we called on your uncles Louis and Marty to take care of you for the night, get you ready for the next day and keep you from dealing with the emergency in the delivery room. They did an excellent job, though by all accounts you were a trooper, even not complaining about your accomodations on the floor. Thank you. We needed to focus on Cash for the night.
That next morning we decided to skip school and bring you to the hospital where momma was. Both of you needed each other. I was on my way home from TCH when you arrived to see momma, but your smiling face gave your uncle and momma a sigh of relief. I wish I could have seen you do your "little brother" dance when she told you Cash was here.
Since Cash has been born, you have kept up your studies, hugged us when we needed it, and made us laugh more than we thought we could in this difficult time. We always wondered why we were blessed with such a smart, fun, happy and responsible little girl and now we know. God gave us you, the perfect child to help us through this test he had planned for us. You even passed on a birthday party that "everyone" was going to, so you could be with your baby brother and mommy. You said, "Momma, its cool, there will be lots of birthday parties I can go to, but how many times will I get to spend the day with you and read to baby Cash?!" I swear, we were stunned to hear that this morning.
And when you asked about Rice University while we drove through the village, you were so matter of fact in your answer as to how hard it is to get into the school, "Straight A's huh, I can do that; I'm going to write my own ticket." Amazing.
Savanah Grace, your middle name defines your mother, and it is proving to be a great choice for you as well. Your strength, happy demeanor and clever thoughts never cease to amaze us. We are so blessed to have such a beautiful, sweet and intelligent little girl. Cash will definitely learn how lucky he is one day, when he sees the videos and pictures of you reading bible stories to him while he grew stronger. Your selfless acts of kindness, from folding clothes to skipping birthdays and even doing homework late at night so we could visit your little brother, prove to us that you truly understand the situation we are in and the title of big sister.
We also are impressed by your complete devotion to your Christian beliefs. We have done our best to pass along the love of the Lord we have, but your understanding and acceptance of Jesus is precious to see. Your nightly prayers at the dinner table with us, your encouraging words to go to church when we didn't hop out of bed to do so and your charitable attitude are a blessing. We also cannot wait to see you play Mary in this years Christmas play at Rosehill Methodist Church.
I also wanted to tell you how much you remind me of your mother. Smart, quick, fair, firm and hard working are all traits she gave you. I give you the funny faces and goofy antics, some creativity and your love for music, but momma gives you all the stuff that matters most. You are lucky to have such a great role model, and you are following in her footsteps well. You will be successful in anything you do, and you will make many friends along the way. You also look a lot like your momma, and thats a great thing. Your beautiful eyes, thick wavy hair, flawless skin all come from her. I gave you left handedness and a temper. I'm sorry.
Last, I wanted you to know how loved you are, and by so many. Your grandparents, uncles, aunts and cousins love you dearly. Your teachers and friends hug you with love. The phone calls we get about some comment you made never end or dissapoint, and they always tell us about some sweet nothing you did recently. That is saying something. Thank you so much for what you have given to us and Cash, we will need more in the months that come.
In closing: Never lose your zeal for life, and always go head on into something you believe in. Keep your faith and never give cause for another to doubt your word. Always be an example of someone walking in the light, and never dishonor your family. God and family are first. Smile. Help. Love.
You will never know how much you mean to us, and you will always be our baby girl. You are a big sister, the oldest child and grandchild on both sides of the family. You will need big shoulders for your responsibilities, but you have proven perfect for the job.
I love you Savy G, and am forever indebted to you.
Love Always,
Daddy
Friday, November 11, 2011
Still waiting...
Well they got us through the doctor rounds but still no results from the scan. We are so nervous. We know that whatever the result, God made that plan, but that doesn't bring us much comfort. Kimberley continues to be strong, but I'm starting to see signs of her wearing down. She needs to spend less time up here at TCH, make her visits more efficient. That's a tough sell to a mommy though. Balancing our time here and other responsibilities will be a huge task. K is my rock. It's unreal how strong she is. Her strength and grace are unmatched. She inspires me to be better and to stay the course. Her notes from the doctors and the organized bags of snacks, mags and breast pump needs make me smile. Kim is always put together, even in stressful times her personality shines through. I'd lose my head if it weren't attached, she remembers to make payroll for a client, or brings 3 snacks, so that any visitor has something.
I'm a lucky man. Savy is still as funny and beautiful as usual. She asked her Big Papaw yesterday, "Does Chevy really run deep?" You can't make this stuff up. Her new book about kittens surprised me, she chose it over the dog book, and I couldn't figure why. We are a dog family for sure. Well, I flipped through it with her last night and now I know why she got it. She wanted to write, "cats drool, dogs rule" all over it. She gets that combativeness from me. Like me buying an Obama book and writing idiot all over his pics. Anyways, we are STILL waiting for the results of the scan. I'll update you all when I can. Toodles.
I'm a lucky man. Savy is still as funny and beautiful as usual. She asked her Big Papaw yesterday, "Does Chevy really run deep?" You can't make this stuff up. Her new book about kittens surprised me, she chose it over the dog book, and I couldn't figure why. We are a dog family for sure. Well, I flipped through it with her last night and now I know why she got it. She wanted to write, "cats drool, dogs rule" all over it. She gets that combativeness from me. Like me buying an Obama book and writing idiot all over his pics. Anyways, we are STILL waiting for the results of the scan. I'll update you all when I can. Toodles.
11/11/11-Will Be A Good Day
As we wait here at TCH I can't help but overhear others. The cries, the puffy eyes, group hugs and sniffles fill the waiting rooms and hallways. It's hard to imagine how much pain is being felt here in the building. But today I cannot help but think that it will be a good one. I must, just to maintain hope. There are many great stories of little warriors that fought hard and made it home into the arms of their loving families. So that is what I must focus on, even to a fault; I have to maintain a positive outlook. I've heard calls being made to loved ones telling them of little ones who have passed, even a mom telling her husband that his child has
Down's Syndrome. Awful conversations, but all God's will. I need to accept his will, but the preparation to .... Ok test done... Be back
Down's Syndrome. Awful conversations, but all God's will. I need to accept his will, but the preparation to .... Ok test done... Be back
Thursday, November 10, 2011
Cash Flash Update 1
We have been updating friends and family(affectionately known as Team Cash) on Facebook until now. We will continue to do so, but this blog will allow us more space and the opportunity for those who really wanna know more, to do so.
Basically, to get you up to speed, here is the big picture. After some instability with BP, Cash has been fairly stable. His heart is beating away and his lungs are strong. Our biggest concern to date has been bleeding on the brain. Currently they say its a 4 and 3, 4 being the highest on a scale from 1-4. This is not good, but until we get another scan so we can determine if its getting better, worse or any damage to his brain we are just watching the other vitals. We just got word that his brain scan got moved up from next Monday to tomorrow. This is good for us, the wait is brutally stressful. Your mind races. He gained a little weight, and is up to a robust 18 oz! Woohoo! I will continually update both facebook and this blog for now on. Thank you everyone for your prayers. We cannot express how much this means to us.
Basically, to get you up to speed, here is the big picture. After some instability with BP, Cash has been fairly stable. His heart is beating away and his lungs are strong. Our biggest concern to date has been bleeding on the brain. Currently they say its a 4 and 3, 4 being the highest on a scale from 1-4. This is not good, but until we get another scan so we can determine if its getting better, worse or any damage to his brain we are just watching the other vitals. We just got word that his brain scan got moved up from next Monday to tomorrow. This is good for us, the wait is brutally stressful. Your mind races. He gained a little weight, and is up to a robust 18 oz! Woohoo! I will continually update both facebook and this blog for now on. Thank you everyone for your prayers. We cannot express how much this means to us.
Who Is Cash Wyatt Franek
Cashton Wyatt Franek was born Novemeber 3 2011; 9:48pm at St. Lukes hospital-Vintage Park. He weighed just under one pound and was born at 23.5 weeks. His due date was Feb 21, 2012. At 12:45am November 4 he was transferred by Kangaroo Crew to Texas Childrens Hospital.
Cashton(Cash) Wyatt is the son of Matthew Wyatt Franek and Kimberley Karole Schilhab Franek. Brother of Savanah Grace Franek. Grandson to Victor and Patsy Franek, Patrick Schilhab and Teresa Wyckof. He has 3 aunts, 5 uncles, 6 cousins and 8 living great grandparents.
He was to be a big boy. His hands and feet are proportionally large to his little body, and one day we hope to see them cast a rod, shoot a gun, catch a ball and defend his family with them.
His namesake is Johnny Cash. As huge music lovers, especially country music, his mother allowed me to name him after my favorite singer. I chose Cash, momma added "ton" for Cashton. The name was picked because Johnny Cash was not only a great musician, but fought demons his whole life, managing to find his way back to his Lord and Savior Jesus Christ when he became lost. I appreciated the fact that he wasn't perfect, and recognized that everyone goes through trials, and hopefully they find their way to God for strength and forgiveness.
I had no idea how profound this name would be, as baby Cash has had huge hurdles requiring him and his family to rely on God's strength since his birth. They say things happen for a reason.
Wyatt is my middle name and I proudly carry it along with at least 7 other men in my family ranging from Great Grandpa Buddy Wyatt to my cousins son Canon Wyatt. Its a strong name with southern roots and I'm glad I passed it to Cash.
Cash comes from a Christian family, which I'm sure he knows by now, since we are always praying about, for and around him. Our family and friends have been praying as well, so I'm sure God knows we all want his will for Cash, no matter how tough that may be on us.
Cashton Wyatt is my son, and my pride; he is a fighter, and for these things I am thankful.
Cashton(Cash) Wyatt is the son of Matthew Wyatt Franek and Kimberley Karole Schilhab Franek. Brother of Savanah Grace Franek. Grandson to Victor and Patsy Franek, Patrick Schilhab and Teresa Wyckof. He has 3 aunts, 5 uncles, 6 cousins and 8 living great grandparents.
He was to be a big boy. His hands and feet are proportionally large to his little body, and one day we hope to see them cast a rod, shoot a gun, catch a ball and defend his family with them.
His namesake is Johnny Cash. As huge music lovers, especially country music, his mother allowed me to name him after my favorite singer. I chose Cash, momma added "ton" for Cashton. The name was picked because Johnny Cash was not only a great musician, but fought demons his whole life, managing to find his way back to his Lord and Savior Jesus Christ when he became lost. I appreciated the fact that he wasn't perfect, and recognized that everyone goes through trials, and hopefully they find their way to God for strength and forgiveness.
I had no idea how profound this name would be, as baby Cash has had huge hurdles requiring him and his family to rely on God's strength since his birth. They say things happen for a reason.
Wyatt is my middle name and I proudly carry it along with at least 7 other men in my family ranging from Great Grandpa Buddy Wyatt to my cousins son Canon Wyatt. Its a strong name with southern roots and I'm glad I passed it to Cash.
Cash comes from a Christian family, which I'm sure he knows by now, since we are always praying about, for and around him. Our family and friends have been praying as well, so I'm sure God knows we all want his will for Cash, no matter how tough that may be on us.
Cashton Wyatt is my son, and my pride; he is a fighter, and for these things I am thankful.
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