Our little girl is a year old! Time has just flown by (well, ignoring October and November of last year when time just seemed to crawl by). It doesn't seem possible that her birthday is here, but here it is.
Taylor has been doing great. She is growing like crazy, and it won't be long before she's up and running around which is scary. She's going to be into everything! Her little mind doesn't stop and she has no fear.
We just hope we can keep her safe and avoid all the nasty bugs this fall/winter. School is back in session and flu bug number 1 was here that fast. Taylor got a bad cold out of it, but she's getting over it. We of course are scared anytime she gets a bug, and just hope the worst stays away.
But hey today is about cake and presents and smiles. I'll see if I can't get a picture or two up soon.
Friday, September 25, 2009
Friday, July 31, 2009
One Year ago
A year ago an amazing journey started for us. I wanted to sit down and write something that could somehow do justice to everything my incredible wife and daughter went through. I tried getting myself "in the mood" to write some poetry or a song or something. So I sat down and started reading. It has been a long time since I read this blog. It was not very far into it that tears started flowing. My writing is bad but not that bad so, try I as might, I couldn't blame the tears on words.
So many memories... Re-living it should not be so hard. This story so far has a happy ending. Taylor is just perfect! She is so beautiful (from her mom), and has got to be one of the happiest babies in the world. She spoke her first word this week. "Momma". And yes she was trying to get the attention of her incredible mom when she said it. No accident. Momma...
Everything that momma has gone through... Michelle is the most amazing mom ever known. How could it be any other word but??
I'm sorry but I can't find my words tonight... All I can do is just sit here and thank my lucky stars that I can put my arms around Taylor and her incredible mom tonight. And I suppose that's probably all I need to say.
So many memories... Re-living it should not be so hard. This story so far has a happy ending. Taylor is just perfect! She is so beautiful (from her mom), and has got to be one of the happiest babies in the world. She spoke her first word this week. "Momma". And yes she was trying to get the attention of her incredible mom when she said it. No accident. Momma...
Everything that momma has gone through... Michelle is the most amazing mom ever known. How could it be any other word but??
I'm sorry but I can't find my words tonight... All I can do is just sit here and thank my lucky stars that I can put my arms around Taylor and her incredible mom tonight. And I suppose that's probably all I need to say.
Monday, February 23, 2009
Million Dollar Smile
I'll try to update the blog later tonight, but just wanted to get this picture up. Haylee took it.
There's also some other new pictures in the slideshow. In case you don't know, you can click on the slideshow and it will take you to Picasa where the pictures are a lot bigger and you can jump to the end.
Thursday, February 19, 2009
Wednesday, February 18, 2009
Out of the ICU
Taylor moved out of the ICU this morning!
She had another crazy day. Her smiling high continued through the evening and into the night. The poor kid was so wired, and couldn't get to sleep. We figure she must have had only 15-30 minutes sleep total throughout the whole day and night. We would get her settled down and about to sleep when something would happen (the neighbor's tv was too loud, I would cough, somebody would walk in the room, the nurse would check on her, etc..) And everytime she fell asleep her saturation level would drop and the stupid monitor would go off. Quite frustrating. I just wanted to unplug her from everything and take her away.
Around 2:00 in the morning she started getting miserable, crying when the other baby would cry, crying when moved, crying to cry, etc... Taylor doesn't cry so you know something is wrong is when she does. She couldn't sit still either. Her head was bobbing around left to right and her arms started flailing uncontrollably. I was a bit concerned that something else was going on, but the nurses and doctors have reassured us that this is not unusual for kids having drug withdrawls. I so wanted Michelle to get a good night of sleep in the quiet room. She has been needing it so badly, but around 2:30 I asked the nurse to go get her. Taylor needed a sedative and I wanted to make sure Michelle was cool with that and also had a chance to work her mom magic before hand. Anyway, we ended up giving her ativan again and Taylor is still sleeping.
Taylor went back on a cannula around 6 this morning. Her saturation levels were just dipping a bit too much when she was asleep. She'll be weened again today from that. She needs to be off it for 24 hours before they'll let her leave the hospital.
One of the ICU doctors that saw Taylor this morning told Michelle that Taylor just needs to get out of here. The bobbing and flailing and all that are a combination of her withdrawals, her not sleeping and the environment. They told Michelle that getting Taylor to her new room that had a window might help. Yeah, right... The window that's way across the room completely out of view? There's a curtain separating us and the other child in the room with RSV. You can't see the window. And its going to be a very long day/night for Michelle and Taylor. The poor kid next to us is just crying and crying and crying. His mom can't get him to sleep. It is horrible.
She had another crazy day. Her smiling high continued through the evening and into the night. The poor kid was so wired, and couldn't get to sleep. We figure she must have had only 15-30 minutes sleep total throughout the whole day and night. We would get her settled down and about to sleep when something would happen (the neighbor's tv was too loud, I would cough, somebody would walk in the room, the nurse would check on her, etc..) And everytime she fell asleep her saturation level would drop and the stupid monitor would go off. Quite frustrating. I just wanted to unplug her from everything and take her away.
Around 2:00 in the morning she started getting miserable, crying when the other baby would cry, crying when moved, crying to cry, etc... Taylor doesn't cry so you know something is wrong is when she does. She couldn't sit still either. Her head was bobbing around left to right and her arms started flailing uncontrollably. I was a bit concerned that something else was going on, but the nurses and doctors have reassured us that this is not unusual for kids having drug withdrawls. I so wanted Michelle to get a good night of sleep in the quiet room. She has been needing it so badly, but around 2:30 I asked the nurse to go get her. Taylor needed a sedative and I wanted to make sure Michelle was cool with that and also had a chance to work her mom magic before hand. Anyway, we ended up giving her ativan again and Taylor is still sleeping.
Taylor went back on a cannula around 6 this morning. Her saturation levels were just dipping a bit too much when she was asleep. She'll be weened again today from that. She needs to be off it for 24 hours before they'll let her leave the hospital.
One of the ICU doctors that saw Taylor this morning told Michelle that Taylor just needs to get out of here. The bobbing and flailing and all that are a combination of her withdrawals, her not sleeping and the environment. They told Michelle that getting Taylor to her new room that had a window might help. Yeah, right... The window that's way across the room completely out of view? There's a curtain separating us and the other child in the room with RSV. You can't see the window. And its going to be a very long day/night for Michelle and Taylor. The poor kid next to us is just crying and crying and crying. His mom can't get him to sleep. It is horrible.
Tuesday, February 17, 2009
Still here in the PICU
Taylor is doing so much better. She is off of her high-flow cannula and is not receiving any lung assistance at all except for her CPAP hat treatments. Her PIC line is still in, and will be until she leaves intensive care, but her IV is out. She is ready to leave.
The last few days have had their ups and downs. Saturday night went pretty well. Minus the fact that there were 2 parents that didn't get more than an hour of sleep because they were too busy doting on their daughter, the night went about perfect. We must have looked really bad in the morning, so much so that they needed to wake us up in a hurry. Our nurse did that, by calmly telling me that the latest X-Ray showed that Taylor's upper-right lung had collapsed again. I was half awake when she asked me if I had heard that Taylor's lung had collapsed. I said yea thinking that she was talking about the previous week, and then kind of woke up and said, "wait, you mean it collapsed again?" and she said yeah. Our hearts pretty much collapsed.
The doctor came in later to talk about it and made us feel a lot better. It is pretty common, and the amount that collapsed was very small (especially compared to the previous week). He said it was only about 10% of the lung capacity and under normal circumstances it wouldn't be something they would even hospitalize someone for. They were going to continue on CPAP treatments, keep her on her high-flow cannula and see what happened (thinking it would probably fix itself).
Sunday morning went okay, but as Sunday went on Taylor wasn't improving as much as everyone hoped. Around 3 that afternoon she was having some more problems and the RT became nervous. They ran another blood test, had the doctor look at her again, and started talking about the next steps which would be either changing her to another form of CPAP or going back on the ventilator. I can't fully speak for Michelle, but I was pretty convinced that she was going to have to go back on the ventilator. I was pretty depressed.
But then our RT bounced back in the room with the results of the blood test and she gave it to the doctor and everyone smiled and said it was perfect. So they would just continue things as is. Then they told us it was time to change rooms. Taylor's roommate Anthony had graduated and left intensive care. They needed to move us to another room that had another RSV kid. So, still shaky from our scare, we packed up and moved. Our new room was even smaller, and we weren't very happy. At the same time my mom and dad came. Way too much excitement for this tired old guy.
From that point on Taylor has been getting better. She has had problems coughing. She also didn't want to drink. Her throat hurt her so bad. On top of it, Monday morning she started having severe (at least to us) withdrawals. She was so wired, and couldn't sleep. Her poor little hands were just restless and wouldn't stop moving. As the day progressed her right foot started thumping (like Thumper from Bambi). She started getting very sad and was just plain miserable. Her heart rate was even high. They gave her an anti-anxiety drug and that was the ticket. She crashed. And she crashed hard. She slept for 5 hours before waking up, downing almost her normal feed in record time, and then went right back to sleep. The sleep worked wonders for her, except that she was so comfortable that the RTs decided to delay her CPAP treatments for a while so that she could sleep. At 8pm the RT came in to do it, but listened to her and said she didn't need it. I was so excited, I could barely contain myself. She was doing so well. I was sure we were leaving.
Then at 11pm I handed Taylor to Michelle and our heart sunk again. Her lungs were retracting again. It was in the center of her chest this time, not where it had been, but it scared the crap out of us. The RT was called and she didn't seem too concerned, but did start her CPAP treatments again. This morning, we got a new doctor. Taylor's C02 level had gone up a little during the night, and with the fact that she had been retracting, he didn't want her to leave.
So we're still here. Taylor has been getting treatments through out the day. Her lungs are kicking butt now and they were talking that they might move us out of here tonight. We just found out though that it wouldn't happen unless they needed the room. So one more night...
We are hoping that our little girl goes to sleep. She is not anything like yesterday, but she is wired still and will not sleep. She's maybe slept a total of 30 minutes or so today in short little naps. So far she hasn't been real miserable (except at times just for a little while). In fact, its just the opposite. Today has been one massive smile fest. She smiles at us non-stop, and she's even smiling at the nurses and RTs which is in of itself amazing. She needs to stop smiling though and go to sleep. One thing though, every time she smiles, her mom just lights up. Just watching the two of them today has made my heart skip a beat or two a couple of times, and this time they are very happy skips.
A few weeks we had this happy little girl. 2 weeks ago she got sick. Just a little over a week ago, we thought we were going to lose her. Its been a crazy ride again, but today our little girl is back to normal (although very wired) and she can't stop smiling. And neither can we.
The last few days have had their ups and downs. Saturday night went pretty well. Minus the fact that there were 2 parents that didn't get more than an hour of sleep because they were too busy doting on their daughter, the night went about perfect. We must have looked really bad in the morning, so much so that they needed to wake us up in a hurry. Our nurse did that, by calmly telling me that the latest X-Ray showed that Taylor's upper-right lung had collapsed again. I was half awake when she asked me if I had heard that Taylor's lung had collapsed. I said yea thinking that she was talking about the previous week, and then kind of woke up and said, "wait, you mean it collapsed again?" and she said yeah. Our hearts pretty much collapsed.
The doctor came in later to talk about it and made us feel a lot better. It is pretty common, and the amount that collapsed was very small (especially compared to the previous week). He said it was only about 10% of the lung capacity and under normal circumstances it wouldn't be something they would even hospitalize someone for. They were going to continue on CPAP treatments, keep her on her high-flow cannula and see what happened (thinking it would probably fix itself).
Sunday morning went okay, but as Sunday went on Taylor wasn't improving as much as everyone hoped. Around 3 that afternoon she was having some more problems and the RT became nervous. They ran another blood test, had the doctor look at her again, and started talking about the next steps which would be either changing her to another form of CPAP or going back on the ventilator. I can't fully speak for Michelle, but I was pretty convinced that she was going to have to go back on the ventilator. I was pretty depressed.
But then our RT bounced back in the room with the results of the blood test and she gave it to the doctor and everyone smiled and said it was perfect. So they would just continue things as is. Then they told us it was time to change rooms. Taylor's roommate Anthony had graduated and left intensive care. They needed to move us to another room that had another RSV kid. So, still shaky from our scare, we packed up and moved. Our new room was even smaller, and we weren't very happy. At the same time my mom and dad came. Way too much excitement for this tired old guy.
From that point on Taylor has been getting better. She has had problems coughing. She also didn't want to drink. Her throat hurt her so bad. On top of it, Monday morning she started having severe (at least to us) withdrawals. She was so wired, and couldn't sleep. Her poor little hands were just restless and wouldn't stop moving. As the day progressed her right foot started thumping (like Thumper from Bambi). She started getting very sad and was just plain miserable. Her heart rate was even high. They gave her an anti-anxiety drug and that was the ticket. She crashed. And she crashed hard. She slept for 5 hours before waking up, downing almost her normal feed in record time, and then went right back to sleep. The sleep worked wonders for her, except that she was so comfortable that the RTs decided to delay her CPAP treatments for a while so that she could sleep. At 8pm the RT came in to do it, but listened to her and said she didn't need it. I was so excited, I could barely contain myself. She was doing so well. I was sure we were leaving.
Then at 11pm I handed Taylor to Michelle and our heart sunk again. Her lungs were retracting again. It was in the center of her chest this time, not where it had been, but it scared the crap out of us. The RT was called and she didn't seem too concerned, but did start her CPAP treatments again. This morning, we got a new doctor. Taylor's C02 level had gone up a little during the night, and with the fact that she had been retracting, he didn't want her to leave.
So we're still here. Taylor has been getting treatments through out the day. Her lungs are kicking butt now and they were talking that they might move us out of here tonight. We just found out though that it wouldn't happen unless they needed the room. So one more night...
We are hoping that our little girl goes to sleep. She is not anything like yesterday, but she is wired still and will not sleep. She's maybe slept a total of 30 minutes or so today in short little naps. So far she hasn't been real miserable (except at times just for a little while). In fact, its just the opposite. Today has been one massive smile fest. She smiles at us non-stop, and she's even smiling at the nurses and RTs which is in of itself amazing. She needs to stop smiling though and go to sleep. One thing though, every time she smiles, her mom just lights up. Just watching the two of them today has made my heart skip a beat or two a couple of times, and this time they are very happy skips.
A few weeks we had this happy little girl. 2 weeks ago she got sick. Just a little over a week ago, we thought we were going to lose her. Its been a crazy ride again, but today our little girl is back to normal (although very wired) and she can't stop smiling. And neither can we.
Saturday, February 14, 2009
So far so good
Taylor is doing pretty good so far. Her oxygen level has been turned down several times now. She got a CPAP treatment earlier which was something we hadn't seen before. Basically they give her pure air through a CPAP type tube attached to a mask that is placed over her face. She exhales against it and its pressure. It is meant to help get things moving in her lungs. She also got some epinephrine, but that didn't seem to do anything (much like at Salmon Creek).
She is not sedated anymore and her heart rate is back to normal. Michelle was arguing with the nurse today that they have been over-sedating Taylor. Once she was taken off, she went back to normal.
The one thing that has a bit bugged right is that Taylor hasn't coughed. And judging by the noise and feel of vibrations in her chest and back, she needs to cough. They will be doing another CPAP treatment soon and an albuterol treatment soon. The albuterol always seemed to get her coughing before, so maybe that will be the ticket.
She is not sedated anymore and her heart rate is back to normal. Michelle was arguing with the nurse today that they have been over-sedating Taylor. Once she was taken off, she went back to normal.
The one thing that has a bit bugged right is that Taylor hasn't coughed. And judging by the noise and feel of vibrations in her chest and back, she needs to cough. They will be doing another CPAP treatment soon and an albuterol treatment soon. The albuterol always seemed to get her coughing before, so maybe that will be the ticket.
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