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Tuesday, November 13, 2012
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Wednesday, October 3, 2012
It's been to long
I thought I would write a quick post and post some cute pictures of the boys. Funny my last post on here was about RSV season and we have just entered RSV season again. So I thought I would post more now that we are in lock down mood and can't enjoy the outdoors for the next 6 months.
The boys are doing pretty good! They just got over their first cold of the season and hopefully the last. Easton had a ear infection and high fever and was misrable! Carter had the sniffles and a hard time breathing which made it almost impossible to drink his bottle. It broke our hearts to see our babies sick!
Carter has learned to crawl everywhere. He likes to steal all his brothers toys and pull his hair. I am trying to get him to understand the word NO but its been hard! :)
He is eating stage 3 baby food and sometimes wants to munch on what we are eating. Both boys receive therapy everyday of the week but Friday so we are busy around here.
Easton is such a trooper. He only complains a little when his brusier of a brother is beating up on him! He has learned to roll all over the place this month. Easton is also enjoying his tummy time more with less frequent vomits which is so nice! He had an MRI done a couple weeks ago and it showed his ventricles had enlarged. We are getting anohter MRI done in a couple weeks and praying he will not need a shunt revision done. I don't know if I can handle another surgery. Easton is also eating stage 2 baby food once a day and we are trying to teach him how to suck from a straw. Easton is the happiest little guy and such a joy!
Here are some cute pictures
The boys are doing pretty good! They just got over their first cold of the season and hopefully the last. Easton had a ear infection and high fever and was misrable! Carter had the sniffles and a hard time breathing which made it almost impossible to drink his bottle. It broke our hearts to see our babies sick!
Carter has learned to crawl everywhere. He likes to steal all his brothers toys and pull his hair. I am trying to get him to understand the word NO but its been hard! :)
He is eating stage 3 baby food and sometimes wants to munch on what we are eating. Both boys receive therapy everyday of the week but Friday so we are busy around here.
Easton is such a trooper. He only complains a little when his brusier of a brother is beating up on him! He has learned to roll all over the place this month. Easton is also enjoying his tummy time more with less frequent vomits which is so nice! He had an MRI done a couple weeks ago and it showed his ventricles had enlarged. We are getting anohter MRI done in a couple weeks and praying he will not need a shunt revision done. I don't know if I can handle another surgery. Easton is also eating stage 2 baby food once a day and we are trying to teach him how to suck from a straw. Easton is the happiest little guy and such a joy!
Here are some cute pictures
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| Carter showing us all his teeth and the food in his mouth. |
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| Easton kicking back |
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| Easton loves his daddy |
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| Carter's first donut. There will be many more because his mom loves donuts |
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| So hard to get a good family picture! |
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| Happy to be at Apple Hill |
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| Boys where done taking pictures |
+075.JPG) |
| Carter |
+131.JPG) |
| Easton |
Tuesday, January 31, 2012
RSV season and lock down
January 24, 2012
Weights and Heights at the boys 6 month check up 2 month adjusted
Carter 13 lbs 7 oz 24 1/4 inches long
Easton 12 lbs 4 oz 23 1/4 inches long- feeding through a ng tube because of his bad reflux and not wanting to eat. :(
What is RSV??
When you have a micro preemie with an extremely compromised immune system, you can't take any chances. In fact, our motto is "better safe than sorry". With both of the boys having chronic lung disease we are taking this very serious and have been on home isolation.
Isolation has to be one of the hardest things, emotionally, to go through when bringing a micro preemie home from the hospital. Not only are you handed your fragile baby, hooked up to oxygen and monitors, but they tell you "watch out for RSV! We don't want to see you back here!"
So our days consist of playing inside and going to doctor appointments. I can't wait for May to come so RSV season can be over and we can enjoy going to friends' houses and being part of the real world!
Update on the little ones:
Easton is my little fighter, he has so many thing going wrong right now and he still is a bundle of joy and does not complain too much! He is still not interested in eating which has been very stressful. He has a NG tube in his nose that he gets his milk through and he is still having choking/coughing fits. In the next couple weeks he will be getting a swallow study done to see whats going on in there and why all the problems. I pray this will give us some answers and little E will feel better and want to eat. On Monday we also got our first of many therapists to stop by the house. Her name was Stephanie and she is Easton's feeding therapist. She will come once a week and work with him on eating and much more. She will be with us for 3 years and I am sure we will become great friends. On Friday we have OT, PT (occupational therapy, physical therapy) and a vision therapist coming by to evaluate the boys and I am sure they all will become part of our family too! This Thursday Easton and Steven will be headed down to Oakland once again for another eye surgery. Easton's right eye still has a hemorrhage that is blocking his vision. We are praying this is his last eye surgery.
Carter is one happy litttle boy. When you kiss his chubby cheeks his face lights up with the cutest smile! In those moments my heart melts and all the hard times are totally worth it! Carter is having some reflux as well and not eating as much as he should but he has some extra rolls on him so I try not to stress too much! Little man is sleeping through the night and I even have to wake him up to eat in the morning. This week we go in for a head scan like an MRI to see if everything with his brain is developing like it should and the shunt is doing its job.
Weights and Heights at the boys 6 month check up 2 month adjusted
Carter 13 lbs 7 oz 24 1/4 inches long
Easton 12 lbs 4 oz 23 1/4 inches long- feeding through a ng tube because of his bad reflux and not wanting to eat. :(
What is RSV??
Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.
The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.
You can catch RSV if:
Causes, incidence, and risk factors:
RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections most often begin in the fall and run into the spring.The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.
You can catch RSV if:
- A person with RSV sneezes, coughs, or blows their nose near you
- You touch, kiss, or shake hands with someone who is infected by the virus
- You touch your nose, eyes, or mouth after you have touched something contamined by the virus, such as a toy or doorknob.
When you have a micro preemie with an extremely compromised immune system, you can't take any chances. In fact, our motto is "better safe than sorry". With both of the boys having chronic lung disease we are taking this very serious and have been on home isolation.
Isolation has to be one of the hardest things, emotionally, to go through when bringing a micro preemie home from the hospital. Not only are you handed your fragile baby, hooked up to oxygen and monitors, but they tell you "watch out for RSV! We don't want to see you back here!"
So our days consist of playing inside and going to doctor appointments. I can't wait for May to come so RSV season can be over and we can enjoy going to friends' houses and being part of the real world!
Update on the little ones:
Easton is my little fighter, he has so many thing going wrong right now and he still is a bundle of joy and does not complain too much! He is still not interested in eating which has been very stressful. He has a NG tube in his nose that he gets his milk through and he is still having choking/coughing fits. In the next couple weeks he will be getting a swallow study done to see whats going on in there and why all the problems. I pray this will give us some answers and little E will feel better and want to eat. On Monday we also got our first of many therapists to stop by the house. Her name was Stephanie and she is Easton's feeding therapist. She will come once a week and work with him on eating and much more. She will be with us for 3 years and I am sure we will become great friends. On Friday we have OT, PT (occupational therapy, physical therapy) and a vision therapist coming by to evaluate the boys and I am sure they all will become part of our family too! This Thursday Easton and Steven will be headed down to Oakland once again for another eye surgery. Easton's right eye still has a hemorrhage that is blocking his vision. We are praying this is his last eye surgery.
Carter is one happy litttle boy. When you kiss his chubby cheeks his face lights up with the cutest smile! In those moments my heart melts and all the hard times are totally worth it! Carter is having some reflux as well and not eating as much as he should but he has some extra rolls on him so I try not to stress too much! Little man is sleeping through the night and I even have to wake him up to eat in the morning. This week we go in for a head scan like an MRI to see if everything with his brain is developing like it should and the shunt is doing its job.
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| "Carter playing with mommy" |
Wednesday, January 18, 2012
Jan 19, 2011
I wanted to share the below essay published in a magazine called Brain, Child. The authoress, Kate Trump, is a mother of a boy with Down Syndrome. As I read this I really appreciated this mother's perfect expression of what it is like to live in the world of a child with special needs.
Not One of Those Mothers
I'm going to confess something.
I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son's one and only life.
Before Thomas, my world was largely untouched by disability. I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance.
Then, one beautiful June day, I was forced to face it-and the face it wore looked just like his brother's, with round cheeks, a tiny nose, and the deepest brown eyes.
Thomas arrived three weeks early on a sunny Friday in June. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the pain of delivery-his birth, my second labor, was quick and almost easy-but for the heart-wrenching pain and grief that came after.
Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned him carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren't alarmed. Dr. T. betrayed nothing while he and the nurses worked to resuscitate my baby. I was too giddy to notice as 10, then 15 minutes passed.
"He's having trouble breathing, so we're sending him to the special care nursery," my doctor said. I remember thinking that it was OK, that these things happen all the time.
Hours passed. I was moved to my postpartum room, and still we waited to see Thomas again.
I have to stop here for a minute, before plunging ahead into the next chapter. It's vital that I get this right so you don't do what we all instinctively want to do-put distance between my life and yours.
It's not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You'll shake your head to clear the vertigo. Not your path in life. More power to me, but you couldn't imagine it.
I understand. Before Thomas, given the choice, I'd be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. "How do you do it? You're amazing," we'd echo in unison to that mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.
That other mother sits a little apart. When she talks about her kid, there's a certain look in her eyes, like she's seeing something we don't see. She speaks a foreign language-of sats and meds, of OT and ST, of IEP and inclusion-that you don't want to understand. It's so hard and she's such an amazing woman, and you know that you wouldn't have the strength to do it.
You mean this as a compliment.
It's not. It's the verbal equivalent of throwing salt over your shoulder. It's a fervent and silent plea: Don't pick me. I'm not strong enough, I don't have enough faith, my heart isn't radiantly
kind. And what will he look like? And will I be able to love him, truly love him?
You wish desperately to believe that special mothers are chosen. That God doesn't give us more than we can handle. Two years ago if I had been told that at two days, instead of being discharged, my baby would be put on a lung bypass machine; that at two and a half months he would have open-heart surgery; that at 14 weeks he would come home, alive but fragile, with a feeding tube and an oxygen tank-if you had told me all of this I would have said, Nope, can't do it, find someone else please.
And if I had been told the first gift we would receive after my son's birth would be a book titled Babies with Down Syndrome, a present from the chief geneticist at the big-shot hospital? Certainly I would have paled and looked around. Me? Surely you mean someone else-someone who hears all this and doesn't turn away in fear.
Perhaps you're still skeptical. You can't let go of your certainty that somehow I am a different breed of mother. Now, I must concede: I am a different kind of mother.
Thomas is 20 months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of his PJs exposing too much wrist because he's growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother's, curls in a cowlick. His plump cheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It's easier than stumbling down the long hall. I should be sleeping, too.
Yet I sit and watch Thomas sleep. Because I can.
I know when he wakes in the morning, he'll pull off the oxygen tube (he needs it only when he's sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. "Bring Tommy down, too," he'll say, because to my amazement, after all we've been through, they're close as brothers can be.
If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I would have known deep down that I was not. If you had told me that I would sit here today by Thomas' crib and say that on most days I don't think much about his having Down syndrome, I would have said you have a fantastic imagination.
But the truth is, whoever or whatever is in charge of baby placement didn't see anything in me that is not in everyone-the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn't picked to be Thomas' mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.
Not One of Those Mothers
I'm going to confess something.
I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son's one and only life.
Before Thomas, my world was largely untouched by disability. I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance.
Then, one beautiful June day, I was forced to face it-and the face it wore looked just like his brother's, with round cheeks, a tiny nose, and the deepest brown eyes.
Thomas arrived three weeks early on a sunny Friday in June. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the pain of delivery-his birth, my second labor, was quick and almost easy-but for the heart-wrenching pain and grief that came after.
Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned him carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren't alarmed. Dr. T. betrayed nothing while he and the nurses worked to resuscitate my baby. I was too giddy to notice as 10, then 15 minutes passed.
"He's having trouble breathing, so we're sending him to the special care nursery," my doctor said. I remember thinking that it was OK, that these things happen all the time.
Hours passed. I was moved to my postpartum room, and still we waited to see Thomas again.
I have to stop here for a minute, before plunging ahead into the next chapter. It's vital that I get this right so you don't do what we all instinctively want to do-put distance between my life and yours.
It's not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You'll shake your head to clear the vertigo. Not your path in life. More power to me, but you couldn't imagine it.
I understand. Before Thomas, given the choice, I'd be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. "How do you do it? You're amazing," we'd echo in unison to that mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.
That other mother sits a little apart. When she talks about her kid, there's a certain look in her eyes, like she's seeing something we don't see. She speaks a foreign language-of sats and meds, of OT and ST, of IEP and inclusion-that you don't want to understand. It's so hard and she's such an amazing woman, and you know that you wouldn't have the strength to do it.
You mean this as a compliment.
It's not. It's the verbal equivalent of throwing salt over your shoulder. It's a fervent and silent plea: Don't pick me. I'm not strong enough, I don't have enough faith, my heart isn't radiantly
kind. And what will he look like? And will I be able to love him, truly love him?
You wish desperately to believe that special mothers are chosen. That God doesn't give us more than we can handle. Two years ago if I had been told that at two days, instead of being discharged, my baby would be put on a lung bypass machine; that at two and a half months he would have open-heart surgery; that at 14 weeks he would come home, alive but fragile, with a feeding tube and an oxygen tank-if you had told me all of this I would have said, Nope, can't do it, find someone else please.
And if I had been told the first gift we would receive after my son's birth would be a book titled Babies with Down Syndrome, a present from the chief geneticist at the big-shot hospital? Certainly I would have paled and looked around. Me? Surely you mean someone else-someone who hears all this and doesn't turn away in fear.
Perhaps you're still skeptical. You can't let go of your certainty that somehow I am a different breed of mother. Now, I must concede: I am a different kind of mother.
Thomas is 20 months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of his PJs exposing too much wrist because he's growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother's, curls in a cowlick. His plump cheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It's easier than stumbling down the long hall. I should be sleeping, too.
Yet I sit and watch Thomas sleep. Because I can.
I know when he wakes in the morning, he'll pull off the oxygen tube (he needs it only when he's sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. "Bring Tommy down, too," he'll say, because to my amazement, after all we've been through, they're close as brothers can be.
If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I would have known deep down that I was not. If you had told me that I would sit here today by Thomas' crib and say that on most days I don't think much about his having Down syndrome, I would have said you have a fantastic imagination.
But the truth is, whoever or whatever is in charge of baby placement didn't see anything in me that is not in everyone-the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn't picked to be Thomas' mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.
Monday, January 16, 2012
Where to start.......
I know its been way to long and I am sure everyone is wondering how the boys are doing. I will try to think back to the time Easton was released from the NICU.
On December 14 , 2011 after 145 days in the NICU Easton was able to come home!! It was so nice to have our family under one roof. Easton had a rough NICU stay, my little guy had 6 eye procedures due to ROP, a PDA surgery, a VP shunt, and a broviac. Way to much for such a small baby! Easton came home on 1/16 of a liter of oxygen and now is up to 1/8th due to his reflux problem. Easton's first week home went really great, he was eating well and even sleeping through the night for 7 hours. Easton went for his first doctor check up at his new pediatrician, she said that he was acting the age of a 1 week old and said to get him into therapy as soon as we can. Not really what I wanted to hear. I told his doctor that he had been having reflux and would vomit daily. She told me that she would not give him medicine until he was losing weight and reflux can get better with age. She was wrong and I am mad that I did not fight harder for Easton to get medicine. 5 days later Easton had a Pulmonologist appointment and at the appointment he threw up on me 2 times! This was not just a little spit up it was 4 ounces of food all over. At that appointment the Pulmonologist realized that Easton needed more oxygen probably because of his reflux. Needless to say she gave us reflux medicine right then and there and told me to get a new pediatrician!!
Over the past 8 days Easton has decided he does not like to eat. We have only been able to get 10-13 ounces down him a day. It is so stressful to try to force feed your child when you know its only hurting them! So on Monday we saw a GI doctor and he placed a NG tube so whatever Easton does not drink we can place the remaining amount in his tube. So now not only does my baby have a cannula in his nose he has a big old feeding tube that he hates! Its nice to know he is getting the nutrition he needs but its so hard to see your child suffer in the pain from his reflux.
Yesterday we went to do a follow up appointment with the Opthamologist and Neurologist. We went in hoping to hear that since Easton has laid in an elevated position since his first vitrectomy that the hemorrhage has dispersed and was no longer an issue. However what we hope is never the case with these two boys. Easton's hemorrhage is still there and blocking the fine focal point in his eye. The Dr. called in a retina specialist who told us that the damage might already be done. It has been two months and the hemorrhage is still there. (The damage being that he will have sight he will just not be able to focus and see clearly through his right eye.) Then the Dr. said that we needed to schedule an appointment with the surgeon from Oakland for follow up and the possibility of yet another surgery. Did i mention i hate going to Oakland? But i hate it even more that i might have to take Easton down there for yet a sixth eye surgery?
On December 14 , 2011 after 145 days in the NICU Easton was able to come home!! It was so nice to have our family under one roof. Easton had a rough NICU stay, my little guy had 6 eye procedures due to ROP, a PDA surgery, a VP shunt, and a broviac. Way to much for such a small baby! Easton came home on 1/16 of a liter of oxygen and now is up to 1/8th due to his reflux problem. Easton's first week home went really great, he was eating well and even sleeping through the night for 7 hours. Easton went for his first doctor check up at his new pediatrician, she said that he was acting the age of a 1 week old and said to get him into therapy as soon as we can. Not really what I wanted to hear. I told his doctor that he had been having reflux and would vomit daily. She told me that she would not give him medicine until he was losing weight and reflux can get better with age. She was wrong and I am mad that I did not fight harder for Easton to get medicine. 5 days later Easton had a Pulmonologist appointment and at the appointment he threw up on me 2 times! This was not just a little spit up it was 4 ounces of food all over. At that appointment the Pulmonologist realized that Easton needed more oxygen probably because of his reflux. Needless to say she gave us reflux medicine right then and there and told me to get a new pediatrician!!
Over the past 8 days Easton has decided he does not like to eat. We have only been able to get 10-13 ounces down him a day. It is so stressful to try to force feed your child when you know its only hurting them! So on Monday we saw a GI doctor and he placed a NG tube so whatever Easton does not drink we can place the remaining amount in his tube. So now not only does my baby have a cannula in his nose he has a big old feeding tube that he hates! Its nice to know he is getting the nutrition he needs but its so hard to see your child suffer in the pain from his reflux.
Yesterday we went to do a follow up appointment with the Opthamologist and Neurologist. We went in hoping to hear that since Easton has laid in an elevated position since his first vitrectomy that the hemorrhage has dispersed and was no longer an issue. However what we hope is never the case with these two boys. Easton's hemorrhage is still there and blocking the fine focal point in his eye. The Dr. called in a retina specialist who told us that the damage might already be done. It has been two months and the hemorrhage is still there. (The damage being that he will have sight he will just not be able to focus and see clearly through his right eye.) Then the Dr. said that we needed to schedule an appointment with the surgeon from Oakland for follow up and the possibility of yet another surgery. Did i mention i hate going to Oakland? But i hate it even more that i might have to take Easton down there for yet a sixth eye surgery?
Tuesday, November 15, 2011
Has it really been three weeks?
So, many people have been asking what is happening with the boys, what is happening with the blog, how is Easton, How is Carter?
So much has happened over the last couple weeks, we have kinda put the blog on the back burner and tried to focus on the boys and all that is happening here in Oakland, Roseville, and home. I will try to hit all the highlights and most of the bumps in the road, while trying to keep the blog short and not turn it into a novel.
So a quick recap, Carter had a shunt put in on the 26th and Easton was going to get his eyes checked. Well Easton got his eyes checked, Halloween happened and then we, Easton, Lauren and I traveled to Oakland Kaiser to have another opthamologist inject the Avastin in Easton's eyes. Meanwhile, while in Oakland we found out Easton had tested positive for MRSA. Methicillin resistant staphylococcus aureus means that he has a type of staph that cannot be treated by some antibiotics, which is not a big deal outside the hospital, in fact we all have some type of staph, however while in the hospital we are now quarantined, everyone needs to wash hands and nurses need to wear gloves and a gown while tending to Easton's needs, (something they should be doing anyway if you ask me) so they don't spread it to other infants.
So during our first stay here in Oakland, (I say first stay because I am currently here with Easton on our second stay.) Lauren and I came down to be with Easton while he received the Avastin injections. Easton was transported down on Wednesday the 2nd and had the procedure done on the 3rd. We waited until Monday the 7th for the follow up. Monday around lunch hour Easton had an eye exam which showed slight improvement but would need to be continuously followed. It was agreed that our Opthamologist back in Roseville would be able to do the follow up exams on Tuesday and Friday. After 6 days in Oakland Easton was able to be transported back to Roseville on Monday night.
Which now brings us to Thursday, Thursday was a big day in the Klippel family, We roomed in at the Hospital with Carter. Let me preface this part by saying Lauren will NEVER AGAIN get a flu shot. Thursday morning was a day to do our last minute errands. We went and got our flu shots and I got my whooping cough shot. As we roomed in with Carter Lauren started getting the chills and an all over body ache. Lauren was having a side effect of the flu shot!!! So, I being the loving husband that i am, went to the pharmacy and got Lauren some Tylenol PM. Lauren was done for the night, bring in the reliever, dad had "daddy duty" for the rest of the night. With a collective 2 hours of sleep under my belt by morning, "mommy" was well rested and ready to cuddle.
By 1 pm Carter was in his graduation cap and we were busting out "Pomp and Circumstance" on our iPhones. Carter roamed the halls saying good bye to all of his Caretakers for the last time of his 112 day stay in the Kaiser NICU. The big surprise, Lauren was due to have Carter and Easton on 11-11-11, and guess who came home on 11-11-11. That's right on his due date 40 weeks gestational, 16 weeks exactly from the day he was Born Carter Steven Klippel strolled out to his mommy car and went home for the First time of his life, outside for the first time in his life.
What a Joyous day, Taking home one of our our amazing little miracles. Carter has been enjoying his time at home, no crying babies, no alarms, no tests, just Eat, Sleep, and Poop, the things a baby should do. It is so fun during the day to listen to Carter grunt, not so much at night, but his little grunt as he roots around for his bottle. We even watched finding Nemo the other night a suggestion from Auntie Jess "one of Carter's primary nurses".
Today, brings us back to day two of our second stay here in Oakland. Last night, Easton was seen by the Opthamologist, who did in fact affirm what we were told, Easton would need the Vetrictomy. A Vetrictomy is where they take three needles and insert them into the eye, one to cut the scar tissue, one to remove the scar tissue and one to replace the void with fluid to keep the pressure even in the eye. An operation that will take about an hour to hour and a half. An operation that must be done while brother and mom are 2 hours away unable to sooth and comfort Easton and where dad and both grandpa's are here to assist and support during this time. Today we find out if the operation will be Wednesday night or Thursday night.
Here is the latest update, my apologies it has taken so long, We have just found out Carter's eyes are great and he will not need to be seen by the Opthamologist until next year. At this time we thank all of you for your love and support for our little boys.
WE RESPECTFULLY ASK YOU TO WITHHOLD FROM COMING TO SEE THE BOYS UNTIL THEY ARE A LITTLE BIGGER AND THEIR IMMUNE SYSTEMS ARE A LITTLE STRONGER, AS WE ARE APPROACHING THE RSV SEASON.
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| Easton in his monster socks |
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| Carter in hit pumkin beenie |
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| Easton enjoying all the attention from mommy in Oakland |
While back at home in Roseville, Carter was still getting bigger and stronger after the shunt. Carter had hit the 8 pound mark and was looking more and more like a newborn/full-term baby. Lauren had come back to Roseville Saturday and Sunday to be with Carter and to leave him some milk. It is the hardest thing to leave one baby behind to be with the other when you have twins, especially when they are in a Hospital still needing care. How amazed and grateful we are for our nurses who had done such an outstanding job taking care of Carter, especially while we were taking care of his brother in Oakland. Carter continued to impress everyone as he did not need monitors or oxygen support, passed his car seat challenge with ease and passed his hearing test.
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| Carter milking the attention while mom and dad were out of town |
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| Mommy and Carter cuddling after rooming in |
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| Carter in his Graduation cap |
Today, brings us back to day two of our second stay here in Oakland. Last night, Easton was seen by the Opthamologist, who did in fact affirm what we were told, Easton would need the Vetrictomy. A Vetrictomy is where they take three needles and insert them into the eye, one to cut the scar tissue, one to remove the scar tissue and one to replace the void with fluid to keep the pressure even in the eye. An operation that will take about an hour to hour and a half. An operation that must be done while brother and mom are 2 hours away unable to sooth and comfort Easton and where dad and both grandpa's are here to assist and support during this time. Today we find out if the operation will be Wednesday night or Thursday night.
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| Easton spending time with Grandpa Russ |
WE RESPECTFULLY ASK YOU TO WITHHOLD FROM COMING TO SEE THE BOYS UNTIL THEY ARE A LITTLE BIGGER AND THEIR IMMUNE SYSTEMS ARE A LITTLE STRONGER, AS WE ARE APPROACHING THE RSV SEASON.
Wednesday, October 26, 2011
Carter's Surgery Day
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| Where is my bottle mom! |
Carter had been NPO (nothing per oral) since 12 am. Even though he was hungry he was still a happy little man and loved all the attention and kisses his parents where giving him. As Steven and I rolled Carter down the long hallway over to the O.R. in another building. As tears rolled down my face, I kept telling myself everything is going to be okay and my Carter is a strong boy. I never thought when I became a mother that I would have to see my child endure such a major surgery and have to trust others with my sons life. As we waited for Carters return to the NICU we loved on Easton. Carter returned to the NICU around 12pm and he was intubated and still on the ventilator. We were hoping he would be off the vent and breathing on this own but he was just to sedated to wake up. As I saw his little head the shunt was a lot bigger then I thought it would look. Doctor McNatt the surgeon came and talked with Steven and I and said everything went well and there was no complications. As we left tonight he was still on the vent and sedated. We are hoping by morning he will wake up from the anesthesia so he can start breathing on his own.
So if a brain surgery was not enough for one day both of the boys got their eyes checked. Both of the boys have had laser eye surgery due to ROP. Dr. Ruben the ophthalmologist said that Carters' eyes looked a lot better and he was really happy with the progress from the laser. Dr. Ruben stated that he is very concerned with Easton's eyes, saying they are no better and might even look worse! His eyes still have a lot of plus disease which can cause blindness. I can't even imagine my precious boy not being able to see the world! I am not sure at this point if there is anything else the doctor can do. Tomorrow Doctor Ruben has asked a collegue of his to come and give us a second opinion. We are trying to learn as much as possible about avastinan injection that should help but has not yet been approved by the F.D.A. People call it a "miracle drug" it has been studied in Texas but not much in small children and infants. We pray we will not need to go this route and that heavenly father feels the same way.
Thank you for all the love and support.
Tuesday, October 25, 2011
3 Months old (37 weeks gestational)
First and foremost thank you to all who came to the baby shower Saturday, and to those who couldn't make it sorry we missed you. It was great to see friends and family that we have not been able to see in awhile. It was nice to get away from reality and tell the happy stories of Carter and Easton. It was nice to hear about other people and their lives. But enough about us, I know you all come here to read about Carter and Easton, after all that is why we have this blog.
After almost thirteen weeks of being in room 105 in the N.I.C.U. (Neonatal Intensive Care Unit) we were finally bumped to Room 101, only because they were installing black out curtains in all of the rooms. Carter and Easton are still side by side with open cribs and loving the attention from their nurses.
Easton is now 5lbs and 10 oz. and has been upgraded to a life of Luxury, as he finally outgrew his isolette and was placed in a "Big Boy" crib this week. He gets to have a mobile which he absolutely loves. I now know by heart the pottery barn kids rendition of "Twinkle Twinkle".... as he cannot get enough of the planes flying over his head. Easton has also been taken off the Sipap and is now on the bubble Cpap. Reader's digest version of bubble Cpap is a tube is placed in water to give pressure and humidify air to help with the premature lungs, it is a softer machine that still assists him. Easton also began "nippling" this week, starting on 5 milliliters of pedialyte over a five minute increment, 4 times a day. He actually gets to remove the bubble Cpap and breathe with just a nasal cannula. Easton has done so well that they are letting him now drink breast milk from the bottle for 5 minutes 4 times a day. Easton's head has still remained within a reasonable size and the doctor is monitoring every couple of days.
Carter has been surprising us by leaps and bounds. "little man" has been packing on the pounds since on breast milk weighing in at 6 lbs. and 8 oz. Carter has been taking three and even four of his eight 50 ml. feeds by bottle and having no problems or residual I(leftover in his tummy before next feeding). Carter is also on 2 Liter per minute of 25% oxygen with a regular cannula off the wall which is great progress to not needing oxygen at all (progress, yes progress he is not off yet, we still have a ways to go) Over the past few days Carter's head has been increasing in circumference and during a head ultrasound last Tuesday we had been informed that his ventricles were increased substantially. Well this morning an additional head ultrasound was taken and to our unsettled fear it was worse than last week. Our Neuro-surgeon had informed us it was time for a shunt. Lauren and I were shocked, for weeks it had been Easton who we thought was sitting on the fence, whether or not to be shunted, we had completely put Carter on the back burner, he had been doing so well. As the Neurologist explained, it became more clear, Carter had been having apnic spells (not breathing spats) and periods of Bradycardia (decreased heart rate) both complications and signs of the pressure building up on his brain, due to the enlarged ventricles. As tonight progressed he continued having these spats and spells. We are watching him closely, nurses are keeping notes and if he continues to worsen his surgery will become more emergent and be moved from Thursday to whenever necessary. Carter has received a priesthood blessing and it is up to our Father in Heaven and the plan he has for our son. We only hope that it does not involve him going under for this operation.
To briefly describe the shunt, it is a small tube that they insert through the skull and brain into the enlarged ventricle the other end they fish down through his body and insert it into his stomach. The fluid from the ventricle then passes through the tube and is absorbed through the stomach thus releasing the pressure and hopefully allowing the brain to repair itself and shrink the size of the ventricle.
It is hard to believe that just a few days ago our little Carter was doing so well, he is now requiring more oxygen, will need to be re-intubated and have to undergo this life changing operation. You can see it in his actions that the enlarged ventricles are affecting his alertness and ability to bottle feed.
As i just got off the phone with the nurses tonight, Carter continues to go up on his feeds, he is now getting 55 ml of breast milk through his NG tube, and Easton is doing well on his Cpap settings.
Wednesday we should find out the results of the eye surgeries from last week. I will try to get another blog Thursday or Friday to update you again on the boys. We also try to post quick updates on facebook
After almost thirteen weeks of being in room 105 in the N.I.C.U. (Neonatal Intensive Care Unit) we were finally bumped to Room 101, only because they were installing black out curtains in all of the rooms. Carter and Easton are still side by side with open cribs and loving the attention from their nurses.
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Easton's decked out crib featuring an airplane mobile, mirror, and zebra toy
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| Easton trying a bottle for the first time |
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| Loving his time off the Cpap |
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| Easton listening to "twinkle Twinkle" and watching his airplanes |
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| Carter getting his first bath from mom and loving it, he actually fell asleep in there |
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| Isn't that sign language for "feed me"? |
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| Carter is doing so well it takes him about 10 minutes to drink a whole bottle |
To briefly describe the shunt, it is a small tube that they insert through the skull and brain into the enlarged ventricle the other end they fish down through his body and insert it into his stomach. The fluid from the ventricle then passes through the tube and is absorbed through the stomach thus releasing the pressure and hopefully allowing the brain to repair itself and shrink the size of the ventricle.
It is hard to believe that just a few days ago our little Carter was doing so well, he is now requiring more oxygen, will need to be re-intubated and have to undergo this life changing operation. You can see it in his actions that the enlarged ventricles are affecting his alertness and ability to bottle feed.
As i just got off the phone with the nurses tonight, Carter continues to go up on his feeds, he is now getting 55 ml of breast milk through his NG tube, and Easton is doing well on his Cpap settings.
Wednesday we should find out the results of the eye surgeries from last week. I will try to get another blog Thursday or Friday to update you again on the boys. We also try to post quick updates on facebook
Thursday, October 20, 2011
Quick Update
This week has been a crazy and stressful week! Steven and I have been at the hospital a lot and our poor boys have had a rough one. On Tuesday the opthomologist examined Carter and Easton's eyes and told us they both need surgery now. All in that same 30 minute time frame the neurologist told me that Carters ventricles have grow significantly and that if the grow anymore throughout the week he will need to have a surgery to place a shunt. I was totally shocked by this news. Everyone thought Carter was out of the woods for this procedure, he was not even being examined once a week like Easton had been. All I have to say was Tuesday put me over the edge!! My babies are big boys now and should not be having such severe problems at this point. I just have to keep telling myself that everything happens for a reason and heavenly father has a plan for my boys. Tonight as we left the hospital both boys where happy and on lower oxygen requirements than the day before so that was a positive. :) We won't know the outcome of the eye surgery until next wednesday but I sure pray its a good one! We will keep you posted about Carter. As of today his heads diameter has grown .5 cm. Please continue to pray for both the boys. We appreciate all the prayers and support. :) Sorry no pictures this week the boys eyes just look to sad! :(
Friday, October 14, 2011
Twelve weeks (36 weeks adjusted)
Carter- 6 lbs 2.9 oz. 18 1/4 inches
Easton- 5 lbs 0.4 oz. 18 1/4 inches
You read it right Twelve weeks in room 105 of the Kaiser Roseville Mother and Children's wing. I cannot believe we have made it this long. As I look back I would have thought there was no way possible to do this for so long and stay as strong as we have. It seems like we get sucker punched with new trials and setbacks all the time, but we hold strong to the exciting and positive progress these two sweet boys make.
Lauren has spent all of her time and energy at the hospital taking care of our boys and last week , Lauren fell ill for two days unable to see Carter and Easton, three days full of progress and exciting firsts. Last Thursday Carter was taken off the Vapo-therm and placed on 2 lpm of blended air and oxygen at a rate of 30%.
Then on Friday night, after i had finished work, visited the boys and did cares, came home to take care of Lauren, took fresh milk back to the boys, did cares and returned home, the Physical therapist came to see Carter and gave the "nod" of approval for him to start bottle feeding. Jess, one of Carter's primary nurses couldn't contain herself. needless to say at about ten thirty Friday night i received a phone call with an excited voice on the other end. "What's wrong Jess?" I asked. Her response was one of the proudest moments of our NICU stay. " Carter just drank all 41 milliliters of milk from a bottle" was her response. What an awesome accomplishment, our little Carter was able to not only drink from a bottle on his first attempt, but he was able to drink all that was given to him. Saturday Lauren was able to give Carter a bottle for her first time, and again impressed us by drinking the whole thing.
Another first was tonight, Lauren gave Carter his first tubby time. That's right our chubby little six pounder got his first real bath. Take a look at this pic...
Carter continues to get half of his feedings by bottle, while the rest go in through his G-tube, after all it is a lot of work for such a little guy to drink a full bottle every three hours.
Easton Has made some progress too, The opthamologist Came in this week and said that His left eye looked much better, and that his right eye looked like it was making progress but still needed more improvement. Hey I'll take that any day, my little man can see!!! and he coordination to boot... The other night We had bought Easton a little toy, a zebra with bright colors and rings on it. Needless to say he was wide awake when the Doctor came in and as she was watching him he reached up and grabbed the rings. We thought it was a fluke thing but for almost 10 minutes Easton sat there batting at the toy grabbing and the rings. WOW what a tugging on your heartstrings, to watch your son be able to make his doctor speechless with how well he was seeing.
Easton has also made some steps forward and some steps backwards, he was doing well on the Si-pap machine when they wanted to try a new mask on him to see if it would be a good investment for the hospital to go towards, needless to say after three days we are back to the old mask and Si-pap.
Easton continues to struggle with his lungs/diaphragm. I say lungs/diaphragm because the Doctors are not sure which is the greater cause of his breathing difficulties. We are still hoping his lungs get stronger and the diaphragm corrects itself before the need of intervention is required.
We love you all and thank you for the positive thoughts and desire to follow our boys and their Journey.
Easton- 5 lbs 0.4 oz. 18 1/4 inches
You read it right Twelve weeks in room 105 of the Kaiser Roseville Mother and Children's wing. I cannot believe we have made it this long. As I look back I would have thought there was no way possible to do this for so long and stay as strong as we have. It seems like we get sucker punched with new trials and setbacks all the time, but we hold strong to the exciting and positive progress these two sweet boys make.
Lauren has spent all of her time and energy at the hospital taking care of our boys and last week , Lauren fell ill for two days unable to see Carter and Easton, three days full of progress and exciting firsts. Last Thursday Carter was taken off the Vapo-therm and placed on 2 lpm of blended air and oxygen at a rate of 30%.
Easton Has made some progress too, The opthamologist Came in this week and said that His left eye looked much better, and that his right eye looked like it was making progress but still needed more improvement. Hey I'll take that any day, my little man can see!!! and he coordination to boot... The other night We had bought Easton a little toy, a zebra with bright colors and rings on it. Needless to say he was wide awake when the Doctor came in and as she was watching him he reached up and grabbed the rings. We thought it was a fluke thing but for almost 10 minutes Easton sat there batting at the toy grabbing and the rings. WOW what a tugging on your heartstrings, to watch your son be able to make his doctor speechless with how well he was seeing.
We love you all and thank you for the positive thoughts and desire to follow our boys and their Journey.
Wednesday, October 5, 2011
Another Day in the NICU
So a nurse asked me yesterday "how many days have you guys been here?" I had to think about it for a minute and it's been 75 days! I can't believe I have survived 75 days in the NICU and still have months before my little guys come home. I have to remind myself daily to take one day at a time.
I missed blogging on the boys 10 weeks and 34 weeks gestational so here are there weights:
Carter is a chubby 5 lbs!!! I love every single roll on his cute little body
Easton is my lean fit man at 4 lbs 2 oz. He is slowly gaining the lb's and lost all his water weight.
News about Carter this week, he has been lowered to 2 liters on the vapotherm and his oxygen stays around 26 percent. He is eating 40 ml every 3 hours which is a little over an ounce. On Oct. 2 Carter tried to breast feed for the first time! It was such an amazing experience. He only lasted about 20 sucks but I am so proud of him! Then on Oct. 3rd we tried the bottle for the first time, he has the suck and swallow down but not the whole breathing part. Preemie's have a hard time getting all 3 of those down so it will just take time and patience. Hopefully he will be a champ at it soon! Carter's head ultrasound still looks stable and no need for a shunt at this time. The only problem Carter has been having is constipation, poor little guy just needs to poo! He is on a 27 calories and bena-protiens, so hopefully when he is just on straight breast milk he won't have this problem. Carter has also been transferred to a "big boy" crib. He looks so small compared to this crib. We were able to put up his mobile and have music playing for him. It was fun for Steven and I to decorate his little "room" with pictures and toys.
Easton was extubated on Friday and is still on Si-pap!! I am so proud of him! He still needs about 45 percent oxygen but I am praying over time he will get stronger and will require less. The opthamologist checked his eyes and said they still don't look good but it usually won't start to improve for another week. I guess the disease is in a pretty bad spot in his eyes. I am praying daily for a miracle and hope my little boy will be able to see! Easton did not have a head ultrasound this week and I am not sure why but his head size has gone down which I am so happy about!! He will have a head ultrasound next week to see if the size of the ventricles have gotten smaller. Easton's diaphragm is still not moving like they want it to. They are not talking about a surgery yet because they want to give it more time to see if it can start moving like it should.
Both boys are given lasix twice a day to pee off all the extra fluid so it's easier for them to breath. Here are some cute pictures from this week.
I missed blogging on the boys 10 weeks and 34 weeks gestational so here are there weights:
Carter is a chubby 5 lbs!!! I love every single roll on his cute little body
Easton is my lean fit man at 4 lbs 2 oz. He is slowly gaining the lb's and lost all his water weight.
News about Carter this week, he has been lowered to 2 liters on the vapotherm and his oxygen stays around 26 percent. He is eating 40 ml every 3 hours which is a little over an ounce. On Oct. 2 Carter tried to breast feed for the first time! It was such an amazing experience. He only lasted about 20 sucks but I am so proud of him! Then on Oct. 3rd we tried the bottle for the first time, he has the suck and swallow down but not the whole breathing part. Preemie's have a hard time getting all 3 of those down so it will just take time and patience. Hopefully he will be a champ at it soon! Carter's head ultrasound still looks stable and no need for a shunt at this time. The only problem Carter has been having is constipation, poor little guy just needs to poo! He is on a 27 calories and bena-protiens, so hopefully when he is just on straight breast milk he won't have this problem. Carter has also been transferred to a "big boy" crib. He looks so small compared to this crib. We were able to put up his mobile and have music playing for him. It was fun for Steven and I to decorate his little "room" with pictures and toys.
Easton was extubated on Friday and is still on Si-pap!! I am so proud of him! He still needs about 45 percent oxygen but I am praying over time he will get stronger and will require less. The opthamologist checked his eyes and said they still don't look good but it usually won't start to improve for another week. I guess the disease is in a pretty bad spot in his eyes. I am praying daily for a miracle and hope my little boy will be able to see! Easton did not have a head ultrasound this week and I am not sure why but his head size has gone down which I am so happy about!! He will have a head ultrasound next week to see if the size of the ventricles have gotten smaller. Easton's diaphragm is still not moving like they want it to. They are not talking about a surgery yet because they want to give it more time to see if it can start moving like it should.
Both boys are given lasix twice a day to pee off all the extra fluid so it's easier for them to breath. Here are some cute pictures from this week.
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| While I was holding skin to skin with Carter he decided he wanted to move his head and look at me. :) |
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| Carter giving me the "why are you waking me up face". |
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| Easton is big boy clothes and on the Sipap |
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| Easton thinking this Sipap head gear is crazy! |
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| Eyes open after surgery and still a little puffy. :( |
Wednesday, September 28, 2011
It should be against the law for Nurses to STRIKE
9 weeks
Carter 4 lbs. 4 oz
Easton
Well it has been about a week since we last blogged and so much has happened, it is hard to figure out where to start. It seems like just little things happen each day but it stacks up really quick into a whole big pile.
Let's start with the Nurses strike last Thursday, What a HORRIBLE experience... These so called nurses that were flown in and brought in by bus from other states could not have really cared any less for our babies. Lauren spent over 24 hours at the hospital overseeing these traveling nurses, who didn't know anything about this NICU, had no passwords to access charts, medicine or supplies locked in cupboards. Lauren would do everything the law would possibly let her do and then watch the nurse screw up the rest, then call one of our Doctors in to fix the mistakes. At one point Carter's nurse used her mouth to open his medicine, USED HER MOUTH TO OPEN HIS MEDICINE, are you for real holy crap you should have seen the doctor and Lauren as they verbally tag teamed this nurse on how wrong that was. Needless to say the Dr. assured us that she will have a very thorough evaluation to give to the agency who hires the traveling nurses.
Easton Easton
NextEaston
As for the ventricles inEaston Easton
The dreaded diaphragm, still has minimal movement on the right side. We are praying and hoping that it will start moving as it should. We also feel that when the broviac is removed that it will help, because that is when it stopped moving in the first place.
Easton
Carter got the to remove the funky rhino mask also known as C-pap. He is now rocking a humidified nasal cannula. It is so fun to see his chunky little face without all the tubes and head gear. Carter is also loving the outfits and beenies mom has been dressing him in. I can happily say that there is no major concerns or pressing surgeries. The only thing we are watching is a little bit of reflux after he eats, causing him to drop his oxygen settings for a couple of minutes, then back to happy. He really loves being on his belly and getting massages from his parents and nurses.
Here are some pictures of the boys over the last week.
Carter 4 lbs. 4 oz
Well it has been about a week since we last blogged and so much has happened, it is hard to figure out where to start. It seems like just little things happen each day but it stacks up really quick into a whole big pile.
Let's start with the Nurses strike last Thursday, What a HORRIBLE experience... These so called nurses that were flown in and brought in by bus from other states could not have really cared any less for our babies. Lauren spent over 24 hours at the hospital overseeing these traveling nurses, who didn't know anything about this NICU, had no passwords to access charts, medicine or supplies locked in cupboards. Lauren would do everything the law would possibly let her do and then watch the nurse screw up the rest, then call one of our Doctors in to fix the mistakes. At one point Carter's nurse used her mouth to open his medicine, USED HER MOUTH TO OPEN HIS MEDICINE, are you for real holy crap you should have seen the doctor and Lauren as they verbally tag teamed this nurse on how wrong that was. Needless to say the Dr. assured us that she will have a very thorough evaluation to give to the agency who hires the traveling nurses.
Next
As for the ventricles in
The dreaded diaphragm, still has minimal movement on the right side. We are praying and hoping that it will start moving as it should. We also feel that when the broviac is removed that it will help, because that is when it stopped moving in the first place.
Carter got the to remove the funky rhino mask also known as C-pap. He is now rocking a humidified nasal cannula. It is so fun to see his chunky little face without all the tubes and head gear. Carter is also loving the outfits and beenies mom has been dressing him in. I can happily say that there is no major concerns or pressing surgeries. The only thing we are watching is a little bit of reflux after he eats, causing him to drop his oxygen settings for a couple of minutes, then back to happy. He really loves being on his belly and getting massages from his parents and nurses.
Here are some pictures of the boys over the last week.
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| That's my boy Carter, can't you see the resemblance |
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| Sleepin' like his daddy, mouth WIDE open |
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| Even though Carter loves his puppy, he is still a lil' too big. |
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| Carter is such a mommies boy already |
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| who needs earmuffs when you have hands |
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| Easton wishing this squeeky tube would just go away |
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| After thirty hours off the vent his right lung collapsed, thanks diaphragm |
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| After a couple hours back on the vent, hello right lung, still a high diaphragm |
Wednesday, September 21, 2011
Tough Day!
Sept. 20, 2011
I will start with all the news on Easton. Monday he had his head ultrasound which showed that his ventricles are slightly larger due to increase in fluid. I have not been able to talk to the surgeon about surgery but I am hoping we can put off surgery for good or at least wait till he is bigger and stronger. Yesterday afternoon Easton was extubated (taken off the vent) and was put on bubble Cpap much to my disliking! I had expressed my concerns to the doctor that Easton was not ready and strong enough for the Cpap. The doctors wanted to try Cpap anyways and told me that they could always switch him to Sipap if need be. So 6 hours later Easton was on Sipap and doctor Chiou said to me "I should have listened to mommy!" There is just something about a mothers intuition... Easton was working hard on the Sipap and I hated every minute of it! Of course we where rooting for him to succeed but it is definitely hard watching your son struggle for every breath. Easton lasted 24 hours on Sipap and tonight at 10 pm was put back on the ventilator. So sad to see but I pray my little boys lungs will get stronger and his diaphram will heal and go back to it's normal movement.
Carter has been having some really good days. He is now on 29ml of breast milk and 27 calories. Man does this make his farts and poopies stink!!!! Occasionally during cares we can take off his mask and play and talk to him. He is so lively and fun and I enjoy every minute with him. I even love the sound of his cry, I know that will get old fast but so far I just love it! Carters head ultrasound came back with no changes since the last ultrasound. We are still praying that all the fluid will eventually resolve. Carters oxygen requirements have been around 28% and they are dropping the settings on the bubble Cpap daily. I am hoping he will soon be on vapo-therm and I will be able to see more of his face without all those tubes. :) Here are some pictures from the past 2 days.
I will start with all the news on Easton. Monday he had his head ultrasound which showed that his ventricles are slightly larger due to increase in fluid. I have not been able to talk to the surgeon about surgery but I am hoping we can put off surgery for good or at least wait till he is bigger and stronger. Yesterday afternoon Easton was extubated (taken off the vent) and was put on bubble Cpap much to my disliking! I had expressed my concerns to the doctor that Easton was not ready and strong enough for the Cpap. The doctors wanted to try Cpap anyways and told me that they could always switch him to Sipap if need be. So 6 hours later Easton was on Sipap and doctor Chiou said to me "I should have listened to mommy!" There is just something about a mothers intuition... Easton was working hard on the Sipap and I hated every minute of it! Of course we where rooting for him to succeed but it is definitely hard watching your son struggle for every breath. Easton lasted 24 hours on Sipap and tonight at 10 pm was put back on the ventilator. So sad to see but I pray my little boys lungs will get stronger and his diaphram will heal and go back to it's normal movement.
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| My sweet Easton |
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| Crazy looking Cpap! |
Carter has been having some really good days. He is now on 29ml of breast milk and 27 calories. Man does this make his farts and poopies stink!!!! Occasionally during cares we can take off his mask and play and talk to him. He is so lively and fun and I enjoy every minute with him. I even love the sound of his cry, I know that will get old fast but so far I just love it! Carters head ultrasound came back with no changes since the last ultrasound. We are still praying that all the fluid will eventually resolve. Carters oxygen requirements have been around 28% and they are dropping the settings on the bubble Cpap daily. I am hoping he will soon be on vapo-therm and I will be able to see more of his face without all those tubes. :) Here are some pictures from the past 2 days.
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| I love holding my little man Carter |
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| Crying baby and still so cute! |
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