Just spoke with Anna regarding Blake's spinal tap results.
The preliminary results indicate that he is negative for any internal infections. The definitive results should be back Sun, but Dr. Divin doesn't expect there to be any difference between that and the preliminary.
So, good news for Blake! No more infection and back on to bigger and better things. Whoo Hooo
Friday, February 6, 2009
Beaurocratic frustration
As y'all can perhaps imagine, this whole situation can be somewhat stressful.
If the situation itself wasn't tough enough, you've got to have thrown in some bureaucratic pain in the butts.
I've read a couple other blogs and have seen where they get to deal with PITA insurance and other things of that ilk. One of my biggest pet peeves in life is that not many people like to do their job, which results in me having to walk them through it, at great pain and waste of time for me.
So amid the joy of holding my two lil ones, I finally checked the mailbox when we got home. Let me tell ya..... It was jammed full. Our mail man must luv us.
Anyway.... I digress. So amid all the junk mail, we got a couple pieces of ominous looking mail.
The first one was from the TX Department of Health. The letter stated that they received some test results and they showed that Blake's results were not normal and that he was at a greater chance for a list of developmental deficiencies like MS, retardation, etc, etc.
This kinda freaked us out because we hadn't heard anything like this from our Dr.'s and they are usually very good about keeping us informed.
As if that wasn't enough to deal with, the next piece of fun time mail was from the state SSI Medicaid dept. That letter stated that the twins did not qualify for State SSI & Medicaid that would cover the remaining medical costs after our personal insurance. The letter went on to state that our case worker said that we waived the coverage. Good times.....
Back to the first letter......Soooo last night, when we went up to the hospital we asked Dr. Untalan to explain this test and the abnormal reading.
He said that they send these tests to the state for all children. The state keeps the results and makes sort of a bell curve out of the results. Since 99% of the babies are normal term, the results are for normal term babies. Preemies have very different results as their organs don't function at the same level, therefore explaining the discrepancy. So, as far as Blake & Jenna's results go, they are fully within the normal range for preemies and they don't see any problems at all.
This morning when Kim went up to visit the kids, she stopped off at the hospital SSI/Medicaid counselor. They told her to disregard the letter we got and that we are still in the works for obtaining SSI/Medicaid assistance. Apparently it was a mistake made by the medicaid office. Sooooo we'll continue to hope that people get their stuff together and handle things as they are supposed to. But.... knowing that it won't happen and that we'll have to step it to get everything straightened out. Joy.
Other than that, things are going pretty good. The kiddo's have been doing great & have been stable. At least the most important things are going pretty good right now. :)
If the situation itself wasn't tough enough, you've got to have thrown in some bureaucratic pain in the butts.
I've read a couple other blogs and have seen where they get to deal with PITA insurance and other things of that ilk. One of my biggest pet peeves in life is that not many people like to do their job, which results in me having to walk them through it, at great pain and waste of time for me.
So amid the joy of holding my two lil ones, I finally checked the mailbox when we got home. Let me tell ya..... It was jammed full. Our mail man must luv us.
Anyway.... I digress. So amid all the junk mail, we got a couple pieces of ominous looking mail.
The first one was from the TX Department of Health. The letter stated that they received some test results and they showed that Blake's results were not normal and that he was at a greater chance for a list of developmental deficiencies like MS, retardation, etc, etc.
This kinda freaked us out because we hadn't heard anything like this from our Dr.'s and they are usually very good about keeping us informed.
As if that wasn't enough to deal with, the next piece of fun time mail was from the state SSI Medicaid dept. That letter stated that the twins did not qualify for State SSI & Medicaid that would cover the remaining medical costs after our personal insurance. The letter went on to state that our case worker said that we waived the coverage. Good times.....
Back to the first letter......Soooo last night, when we went up to the hospital we asked Dr. Untalan to explain this test and the abnormal reading.
He said that they send these tests to the state for all children. The state keeps the results and makes sort of a bell curve out of the results. Since 99% of the babies are normal term, the results are for normal term babies. Preemies have very different results as their organs don't function at the same level, therefore explaining the discrepancy. So, as far as Blake & Jenna's results go, they are fully within the normal range for preemies and they don't see any problems at all.
Wheeeeew..... That was good news.
This morning when Kim went up to visit the kids, she stopped off at the hospital SSI/Medicaid counselor. They told her to disregard the letter we got and that we are still in the works for obtaining SSI/Medicaid assistance. Apparently it was a mistake made by the medicaid office. Sooooo we'll continue to hope that people get their stuff together and handle things as they are supposed to. But.... knowing that it won't happen and that we'll have to step it to get everything straightened out. Joy.
Other than that, things are going pretty good. The kiddo's have been doing great & have been stable. At least the most important things are going pretty good right now. :)
A Fathers day
Well, yesterday was quite the exciting day.
Wed evening Kim was playing around with the computer and said that I COULD NOT look at the pics she had taken that day. See..... she was hangin out with Anna & April while she was up there visiting. She told me that she was just going to run up there for a quick visit, but that turned out to be an all day thing. haha
So before we headed up to the hospital, we needed to swing by Walgreens and pick up some photos she had developed. When we got to the hospital, she presented me with a couple Valentines cards "from the twins". They were way way cute, & I (Mr. I hate the consumer holiday that is V day) Loved them! I'll post the Vday pics that Kim took with the twins.
Kim has been doing "Kangaroo Care" with Jenna for the past few days and she's been loving it.
For those that may have missed it in an earlier post, Kangaroo Care is where we get skin to skin contact with the lil ones and they lie on our chest for a little bonding time.
Kim had held Jenna a few times and was really really looking forward to me getting some time with her. So, yesterday was the big day.
Anna and April were taking care of the twins and they seem to love it when the twins get a special treat. So both of them were kind enough to get everything set up and ready for me to hold my lil girl.
Holding her was wonderful!! Once we got all comfy, we just chilled out and relaxed. Each time Jenna gets out, she's able to stay out longer and longer before she's ready to go back into her isolette. So I just sat there rocking and talking to her. Good times for sure! We were able to hang out together for about 40min, then it was time to get her settled back into her home.
Around that time, April told us that Dr. Untalan decided that he'd like Blake to try some Kangaroo time as well. Kim's eye's just lit up. First thing she said was that she'd like daddy to hold his lil boy. Who am I to argue with Mamma?
Before I could hold him though, we needed to go to the Parent University class that the NICU puts on every Thu. They put on these little classes to help teach parents about preemies and some of their unique care. Yesterdays class was on RSV (cold for us, lung disease for babies) and all the fun it can bring.
After the class we headed back to good ole Bay 2 to get some personal time with Blake and Jenna.
Blake still has an IV line, so it was slightly more complicated getting him out, but not too bad. Got him settled in pretty quick and then he was happy and comfy. He was pretty active while we sat together and would occasionally open an eye to check things out. He did great for his first time out of the isolette and was able to stay out for over 30min. His 02 and heart rate were perfect the whole time. April and Dr. Untalan were very impressed with his performance.
It was kinda weird. I thought that I might get kinda misty when I first got to hold one of them, but I was strangely relaxed & not too emotional. I guess I may still be in survival mode, which has been keeping most of my emotions in check.
Even in my somewhat muted emotional state, it was a truly amazing experience that I can not wait to repeat & only makes me want them to come home more. While I was sitting there, I just imagined all 4 of us being home & taking naps together while they layed on our chest. That will be a glorious day indeed!
Wed evening Kim was playing around with the computer and said that I COULD NOT look at the pics she had taken that day. See..... she was hangin out with Anna & April while she was up there visiting. She told me that she was just going to run up there for a quick visit, but that turned out to be an all day thing. haha
So before we headed up to the hospital, we needed to swing by Walgreens and pick up some photos she had developed. When we got to the hospital, she presented me with a couple Valentines cards "from the twins". They were way way cute, & I (Mr. I hate the consumer holiday that is V day) Loved them! I'll post the Vday pics that Kim took with the twins.
Kim has been doing "Kangaroo Care" with Jenna for the past few days and she's been loving it.
For those that may have missed it in an earlier post, Kangaroo Care is where we get skin to skin contact with the lil ones and they lie on our chest for a little bonding time.
Kim had held Jenna a few times and was really really looking forward to me getting some time with her. So, yesterday was the big day.
Anna and April were taking care of the twins and they seem to love it when the twins get a special treat. So both of them were kind enough to get everything set up and ready for me to hold my lil girl.
Holding her was wonderful!! Once we got all comfy, we just chilled out and relaxed. Each time Jenna gets out, she's able to stay out longer and longer before she's ready to go back into her isolette. So I just sat there rocking and talking to her. Good times for sure! We were able to hang out together for about 40min, then it was time to get her settled back into her home.
Around that time, April told us that Dr. Untalan decided that he'd like Blake to try some Kangaroo time as well. Kim's eye's just lit up. First thing she said was that she'd like daddy to hold his lil boy. Who am I to argue with Mamma?
Before I could hold him though, we needed to go to the Parent University class that the NICU puts on every Thu. They put on these little classes to help teach parents about preemies and some of their unique care. Yesterdays class was on RSV (cold for us, lung disease for babies) and all the fun it can bring.
After the class we headed back to good ole Bay 2 to get some personal time with Blake and Jenna.
Blake still has an IV line, so it was slightly more complicated getting him out, but not too bad. Got him settled in pretty quick and then he was happy and comfy. He was pretty active while we sat together and would occasionally open an eye to check things out. He did great for his first time out of the isolette and was able to stay out for over 30min. His 02 and heart rate were perfect the whole time. April and Dr. Untalan were very impressed with his performance.
It was kinda weird. I thought that I might get kinda misty when I first got to hold one of them, but I was strangely relaxed & not too emotional. I guess I may still be in survival mode, which has been keeping most of my emotions in check.
Even in my somewhat muted emotional state, it was a truly amazing experience that I can not wait to repeat & only makes me want them to come home more. While I was sitting there, I just imagined all 4 of us being home & taking naps together while they layed on our chest. That will be a glorious day indeed!
Wednesday, February 4, 2009
20 Days of Parenthood
Parenthood~
Jason and I have been parents for 20 days. Although in some ways, we haven't been able to experience many of the "perks" of parenthood-holding both of our babies whenever we want, rocking them to sleep, feeding them, dressing them, bathing them, waking up to their cries to console them, seeing their eyes open each morning to the sound of our voices, watching them doze off each night, stare at them as they sleep in our arms.....we have been able to form a truly amazing bond with our two precious babies. We are so proud.We are so very thankful for being blessed with two strong babies who are true fighters.
In many ways it seems that the three weeks of being in NICU has been mere hours and in other ways it seems it has already been months. We were cautioned that the NICU experience would be like riding a roller coaster. One that you didn't just ride once and get off. You just stay on and continue to ride and ride. this is true. We are so thankful for each "uneventful" or "boring" day. We cherish the low-key days. We are quickly learning the nature of "NICU Parenting"-unpredictable.
Anyways......
Here is our nightly update.....
Blake had his "lumbar puncture" this evening in order to see if this infection has entered into other parts of his body. The prelim results will be tomorrow and the final will be back in a few days. Blake was given a sedative before hand. He was looking around off and on when we visited tonight then he drifted into a nice comfortable sleep. He is just so darn cute! His O2 levels are looking GREAT! He weighed in at 1lb 12 ounces tonight. He is looking good. He is now 12.8 inches long. He was 12.4 at birth.
Jenna and I had some kangaroo time tonight again. It was just so comfortable and felt so natural. I don't know who was more comfortable sitting there, her or me. She remained calm and rested well. Jason will be holding her for the first time tomorrow. I can't wait. Jenna weighed in at 1 lb 12 ounces again tonight. She has a nice little round belly. Before her kangaroo time, I "got to" change a really icky dirty diaper. This is the first "messy" one I've changed and, boy, it was a stinker-hahahaha. Many many more to come I know. Jenna is now 12.65 inches long. She was 12 inches at birth.
2lbs, here we come!!!!! Getting closer.....
Before you become a parent, you hear about, are witness to and are told many things about parenthood. However, nothing could have prepared us for what we have experienced thus far. The wait we are enduring for our family to be together at home has already been a VERY long one. We have a long wait ahead of us. However, even so, I would not trade a minute of this "wonderful" privilege of being a "mom" for anything in the world!
Jason and I have been parents for 20 days. Although in some ways, we haven't been able to experience many of the "perks" of parenthood-holding both of our babies whenever we want, rocking them to sleep, feeding them, dressing them, bathing them, waking up to their cries to console them, seeing their eyes open each morning to the sound of our voices, watching them doze off each night, stare at them as they sleep in our arms.....we have been able to form a truly amazing bond with our two precious babies. We are so proud.We are so very thankful for being blessed with two strong babies who are true fighters.
In many ways it seems that the three weeks of being in NICU has been mere hours and in other ways it seems it has already been months. We were cautioned that the NICU experience would be like riding a roller coaster. One that you didn't just ride once and get off. You just stay on and continue to ride and ride. this is true. We are so thankful for each "uneventful" or "boring" day. We cherish the low-key days. We are quickly learning the nature of "NICU Parenting"-unpredictable.
Anyways......
Here is our nightly update.....
Blake had his "lumbar puncture" this evening in order to see if this infection has entered into other parts of his body. The prelim results will be tomorrow and the final will be back in a few days. Blake was given a sedative before hand. He was looking around off and on when we visited tonight then he drifted into a nice comfortable sleep. He is just so darn cute! His O2 levels are looking GREAT! He weighed in at 1lb 12 ounces tonight. He is looking good. He is now 12.8 inches long. He was 12.4 at birth.
Jenna and I had some kangaroo time tonight again. It was just so comfortable and felt so natural. I don't know who was more comfortable sitting there, her or me. She remained calm and rested well. Jason will be holding her for the first time tomorrow. I can't wait. Jenna weighed in at 1 lb 12 ounces again tonight. She has a nice little round belly. Before her kangaroo time, I "got to" change a really icky dirty diaper. This is the first "messy" one I've changed and, boy, it was a stinker-hahahaha. Many many more to come I know. Jenna is now 12.65 inches long. She was 12 inches at birth.
2lbs, here we come!!!!! Getting closer.....
Before you become a parent, you hear about, are witness to and are told many things about parenthood. However, nothing could have prepared us for what we have experienced thus far. The wait we are enduring for our family to be together at home has already been a VERY long one. We have a long wait ahead of us. However, even so, I would not trade a minute of this "wonderful" privilege of being a "mom" for anything in the world!
Blake is still fighting off a "bug"
Just talked to Anna & April (Jenna & Blakes nurses).
Jenna has been doing great all day. She's been very stable and just been hangin out with Anna. So, not really anything new to report, which is a good thing in the NICU world!
Blake has a little bit of an update though. His 24hr blood culture came back negative for further infection. Unfortunately his 48hr culture came back positive. He seems to be recovering nicely and is more active, and is feeding again, but they've got to get specifics on this infection.
They want to ensure that the bacterial infection hasn't moved inside the body and the severity of the infection. In order to do this, they have to do a "lumbar puncture" in order to take some spinal fluid. From what we've been told this is a pretty easy procedure and doesn't carry too much risk.
Being a big baby when it comes to needles, this procedure doesn't really make me all that happy.
Dr. Kansas is going to give me a call before she performs the procedure to answer the flood of questions running around my brain right now.
I certainly trust their judgement, but I like to have as much info as possible before they do anything invasive.
So, all in all, both of them have had a great day and are still making positive steps in the right direction.
Jenna has been doing great all day. She's been very stable and just been hangin out with Anna. So, not really anything new to report, which is a good thing in the NICU world!
Blake has a little bit of an update though. His 24hr blood culture came back negative for further infection. Unfortunately his 48hr culture came back positive. He seems to be recovering nicely and is more active, and is feeding again, but they've got to get specifics on this infection.
They want to ensure that the bacterial infection hasn't moved inside the body and the severity of the infection. In order to do this, they have to do a "lumbar puncture" in order to take some spinal fluid. From what we've been told this is a pretty easy procedure and doesn't carry too much risk.
Being a big baby when it comes to needles, this procedure doesn't really make me all that happy.
Dr. Kansas is going to give me a call before she performs the procedure to answer the flood of questions running around my brain right now.
I certainly trust their judgement, but I like to have as much info as possible before they do anything invasive.
So, all in all, both of them have had a great day and are still making positive steps in the right direction.
January 4th-20 Days Old
Just received the "morning report".
Jenna had a good night last night and is having a good morning. Anna is taking care of her today. We are so glad that she is doing so well with her feeds and is now off of all IV fluids. I bet she will hit the 2lb milestone before we know it. I love her lil round belly.
Blake is feeling much better. April, his nurse for the day, reports that he looks and is behaving much better than last time she was caring for him when he was pretty sick. He is active today and is much more himself. He is on constant feeds now...1/2cc every hour. He is even down in the low 20s on his O2 level! No more A's and B's as of lately (Apnea/Brady). We couldn't be happier to have our little boy feeling much better. Keep it up lil guy!
I am going to go up and visit in a while. I am really anxious for Jason to do kangaroo care with Jenna. He has been feeling fine but is being really careful and cautious with having a mild tickle in his throat. Seems to not be as much today. We'll see about tonight.
Jenna had a good night last night and is having a good morning. Anna is taking care of her today. We are so glad that she is doing so well with her feeds and is now off of all IV fluids. I bet she will hit the 2lb milestone before we know it. I love her lil round belly.
Blake is feeling much better. April, his nurse for the day, reports that he looks and is behaving much better than last time she was caring for him when he was pretty sick. He is active today and is much more himself. He is on constant feeds now...1/2cc every hour. He is even down in the low 20s on his O2 level! No more A's and B's as of lately (Apnea/Brady). We couldn't be happier to have our little boy feeling much better. Keep it up lil guy!
I am going to go up and visit in a while. I am really anxious for Jason to do kangaroo care with Jenna. He has been feeling fine but is being really careful and cautious with having a mild tickle in his throat. Seems to not be as much today. We'll see about tonight.
Tuesday, February 3, 2009
Tuesday
Blake is now 1lb 12 ounces!!! Yay Blake. He had a good day and seems to be feeling better already. He only had 2 "A's and B's" today (Apnea and Brady). They were even able to start him back on feeds. Although only 1 ounce/3hrs, it is really good that they were able start feeds so soon after having tested for an infection. He will continue to be on antibiotics for a couple days. He seemed to be much more himself today. We are so happy that he seems to be recovering quickly and getting stronger.
We were at the hospital until about 10:30 and Jenna hadn't been weighed yet. Jason had a bit of a tickle in the throat and we are sure it is due to allergies but he wanted to make be extra cautious and did not do kangaroo care with her. I did kangaroo care with her again tonight. Absolutely fantastic time!!!!! I can't wait til J holds her.
It is really late so I will close for tonight.
We were at the hospital until about 10:30 and Jenna hadn't been weighed yet. Jason had a bit of a tickle in the throat and we are sure it is due to allergies but he wanted to make be extra cautious and did not do kangaroo care with her. I did kangaroo care with her again tonight. Absolutely fantastic time!!!!! I can't wait til J holds her.
It is really late so I will close for tonight.
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