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.
She's off the ventilator!
Taylor just went off the ventilator!!!!
She's on a high-flow nasal cannula. Crossing our fingers now everything goes good.
She's on a high-flow nasal cannula. Crossing our fingers now everything goes good.
Frustrating day so far
Taylor may or may not make it off the ventilator today. It is beginning to look like not. From my perspective, I think its just a doctor being too careful because she was a preemie. Caution is good, but there is inconsistency in what has been said in the latter part of the week with what is happening today. In addition there's differences of opinion going on between the doctor, nurse and RT. The RT thinks she would be fine going off, and, like us she thinks that perhaps part of the problem is Taylor being irritated by the breathing tube. The nurse feels more comfortable with her being on the other ventilator first just so that he can see the numbers. I don't think the doctor wants to make the call to take her off. The doctor makes the decision so its probably not going to happen.
They moved her back to the first ventilator that she was on, so that they can get more accurate diagnostic measurements. The transition went perfect. She appears to be doing great, so they will make more changes here in a while and then maybe take her off, maybe not. She seems to be breathing on her own, though her oxygen level is high right now and they want to bring that down. They need to wait on a blood gas test first, before making any adjustments.
Her heart rate is down low today. Michelle thinks they are over sedating Taylor. They backed off of that, and then she had a really bad vagal response and they gave her a bowlus again to sedate her. She had the vagal when they were moving her head and sucking it. In other words they caused it. The doctor seemed to think it supported her being on a ventilator. That made no sense to us and we let him know that.
She is sleeping right now and they have not sedated any additional, but she still is on about 1/2 of what she was this morning. Her heart rate is still pretty low.
Anyway, we'll know more soon. Maybe.
They moved her back to the first ventilator that she was on, so that they can get more accurate diagnostic measurements. The transition went perfect. She appears to be doing great, so they will make more changes here in a while and then maybe take her off, maybe not. She seems to be breathing on her own, though her oxygen level is high right now and they want to bring that down. They need to wait on a blood gas test first, before making any adjustments.
Her heart rate is down low today. Michelle thinks they are over sedating Taylor. They backed off of that, and then she had a really bad vagal response and they gave her a bowlus again to sedate her. She had the vagal when they were moving her head and sucking it. In other words they caused it. The doctor seemed to think it supported her being on a ventilator. That made no sense to us and we let him know that.
She is sleeping right now and they have not sedated any additional, but she still is on about 1/2 of what she was this morning. Her heart rate is still pretty low.
Anyway, we'll know more soon. Maybe.
Friday, February 13, 2009
Update
Great news today! Assuming things continue to go good today, Taylor will be going off the ventilator tommorrow! The plan is to stop her feeds around 3 am and remove it tomorrow. They stop her feeds so that she does not throw up when they remove the ventilator. The plan is for her to go onto an nasal cannula w/ oxygen. She'll be in the ICU overnight and then hopefully she will be moved to a regular room on Sunday!!!! Best of all, I should be able to see her back in Michelle's arms tomorrow!
She is getting a blood transfusion today. They are not sure she needs it. Because of the amount of fluid and other drugs in her blood, its hard for them to get an accurate red blood cell count. They think its for the best and will help her as she transitions off of the ventilator.
She has a couple times this morning where her oxygen levels dropped. They don't know if it was just guck in her throat and lungs needing to be sucked out, or if she was having bronchial spasms from irritation from the breathing tube. If it is spasms and they continue they will move her back to the ventilator that she was originally on.
They are continuing to give her more drugs to try and reduce the amount of fluid in her system. She is real puffy I guess still. Unfortunately, she had to have another IV for that because its a continual drip. As for the other drugs, they are being to back them off. They think that the drugs are having a compound effect on her right now making her more sedated than she needs to be. We also got some good news in that arena. Originally we were told that she would need to go on methodone as she was weened of all the narcotics, because of their highly addictive nature. But its sounds like the level of narcotics has been low enough that they won't need to do that.
All in all, its been a fantastic day so far. Michelle came home yesterday for a couple hours. We ended up keeping her here a lot longer. It was great for everyone though. My plan is to be at the hospital for the weekend starting tommorrow. I was planning on going up tonight, but I'm fighting this stupid bug too and it seems to be winning today so I'll probably just stay home tonight and go up tomorrow.
She is getting a blood transfusion today. They are not sure she needs it. Because of the amount of fluid and other drugs in her blood, its hard for them to get an accurate red blood cell count. They think its for the best and will help her as she transitions off of the ventilator.
She has a couple times this morning where her oxygen levels dropped. They don't know if it was just guck in her throat and lungs needing to be sucked out, or if she was having bronchial spasms from irritation from the breathing tube. If it is spasms and they continue they will move her back to the ventilator that she was originally on.
They are continuing to give her more drugs to try and reduce the amount of fluid in her system. She is real puffy I guess still. Unfortunately, she had to have another IV for that because its a continual drip. As for the other drugs, they are being to back them off. They think that the drugs are having a compound effect on her right now making her more sedated than she needs to be. We also got some good news in that arena. Originally we were told that she would need to go on methodone as she was weened of all the narcotics, because of their highly addictive nature. But its sounds like the level of narcotics has been low enough that they won't need to do that.
All in all, its been a fantastic day so far. Michelle came home yesterday for a couple hours. We ended up keeping her here a lot longer. It was great for everyone though. My plan is to be at the hospital for the weekend starting tommorrow. I was planning on going up tonight, but I'm fighting this stupid bug too and it seems to be winning today so I'll probably just stay home tonight and go up tomorrow.
Wednesday, February 11, 2009
Another good day!
Taylor had another good day! Nothing really changed. I am so used to bad news, that "nothing changed" is so relieving to me. I know my little girl and I know that she's going to kick some bootie and get healthy! She just needs a break, and that's something I wondered if she would get. She is, and I'm so grateful! Thank you to everyone that has kept her in your thoughts.
I'm really missing my little girl tonight. It got me writing again...
Sweet Baby Girl
Sweet baby girl
if I could take your pain
I would not hesitate
nor would I strain
I can find no reason
why you suffer so
There is no reason
here that I know
That could explain
why it is must be you
It is so unfair but
fairness is askew
And here you lie
suffering again
Your accomplishments
never forgotten
Sweet baby girl
I do not know why
these things happen
or how I'll get by
Because seeing you
is killing me
and I just want you
back with me
Back in my arms
cuddled in that space
I want to see that smile
on your beautiful face
I want to wake up to
tommorow's alarm
and see you lying
in your mother's arms
Sweet baby girl
I know you will be fine
Deep down I know
all it takes is time
But it hurts so deep
and it stabs the soul
Every grimace
it hits me whole
I hear the machine
it is in my head
but I will think
of tomorrow instead
when you are home
within my arms
because that is
where you belong
I'm really missing my little girl tonight. It got me writing again...
Sweet Baby Girl
Sweet baby girl
if I could take your pain
I would not hesitate
nor would I strain
I can find no reason
why you suffer so
There is no reason
here that I know
That could explain
why it is must be you
It is so unfair but
fairness is askew
And here you lie
suffering again
Your accomplishments
never forgotten
Sweet baby girl
I do not know why
these things happen
or how I'll get by
Because seeing you
is killing me
and I just want you
back with me
Back in my arms
cuddled in that space
I want to see that smile
on your beautiful face
I want to wake up to
tommorow's alarm
and see you lying
in your mother's arms
Sweet baby girl
I know you will be fine
Deep down I know
all it takes is time
But it hurts so deep
and it stabs the soul
Every grimace
it hits me whole
I hear the machine
it is in my head
but I will think
of tomorrow instead
when you are home
within my arms
because that is
where you belong
Tuesday, February 10, 2009
Steady and stable
Short post tonight. Taylor was stable today and actually progressed a little. Michelle was told that one way they can determine if her lungs are getting better is if when they suck the mucus out her oxygen saturation levels don't drop. And for the most part her sat levels stayed good today. Progress!
Here's a picture Shanon took tonight. It is real sad to me, but I figured I would add it to the blog for posterity.
Taylor is on increased feeding which is great, but also bad because Michelle doesn't have enough milk for her right now. They wanted to fortify and Michelle said no, so they said they would increase the volume instead. Michelle is concerned that she will not have enough to get through the night and is thinking about coming home to get some. I hope not, because it snowed again today and we have several inches of snow out there that is freezing. Michelle told me she would call me right back if she was coming home, and she has not so I take that as a good sign. We will figure out a way to get more milk to the hospital tomorrow. Our freezer is full so its not an issue of not having any.
Michelle has given her massages through the day trying to help Taylor with her circulation. Taylor still has not had a blood transfusion, so let's keep our fingers crossed that she doesn't need one.
We did find out that Taylor may not need to go back on CPAP. They may be able to go from the ventilator straight to the nasal cannula. This would be great for us cause we can't stand CPAP, and great for Taylor because when they do have babies on CPAP they withhold feeding them for reasons I don't totally understand.
She tested negative for whooping cough and for influenza! Big relief there.
Anyway, that's about it for tonight. Another good day!
Here's a picture Shanon took tonight. It is real sad to me, but I figured I would add it to the blog for posterity.
Taylor is on increased feeding which is great, but also bad because Michelle doesn't have enough milk for her right now. They wanted to fortify and Michelle said no, so they said they would increase the volume instead. Michelle is concerned that she will not have enough to get through the night and is thinking about coming home to get some. I hope not, because it snowed again today and we have several inches of snow out there that is freezing. Michelle told me she would call me right back if she was coming home, and she has not so I take that as a good sign. We will figure out a way to get more milk to the hospital tomorrow. Our freezer is full so its not an issue of not having any.
Michelle has given her massages through the day trying to help Taylor with her circulation. Taylor still has not had a blood transfusion, so let's keep our fingers crossed that she doesn't need one.
We did find out that Taylor may not need to go back on CPAP. They may be able to go from the ventilator straight to the nasal cannula. This would be great for us cause we can't stand CPAP, and great for Taylor because when they do have babies on CPAP they withhold feeding them for reasons I don't totally understand.
She tested negative for whooping cough and for influenza! Big relief there.
Anyway, that's about it for tonight. Another good day!
Monday, February 9, 2009
"TAYLOR TITLE LOVE"
Our nightmare continued last night. I mentioned the central line failing and that Taylor would need to get a PIC line again. Basically, Taylor had a central line placed during the time when the ventilator was inserted. She was supposed to get it in the groin, but that did not work so she got it in her upper left shoulder area. The central line is fed to the heart. Unfortunately, Taylor's line did not get fed like they wanted to and it initially ended up going upward toward her face instead of down toward her heart. They hoped that it would move on its own. It did not. Worst yet it infiltrated. Throughout the evening the right side of Taylor's face was swelling. Michelle brought this to their attention and at first they just thought it was the result of trauma from the line being placed. Michelle as always did not give up and eventually convinced them that they should try pulling some blood back or pushing some saline in to see if there were any problems. They did it and sure enough it didn't work. They moved her medicine down to another normal iv catheter in her foot and got the doctor's permission to remove the central line. They then ordered for a PIC line to be placed.
I think this was around 11 o'clock. They placed a call for the PIC line installers and told us it wouldn't be to long. We were also told that some of the folks who installed it wouldn't mind if we were in the room. We were extremely tired but felt we wanted to be there for Taylor. So we sat with our baby and just tried to put some sense into everything we had gone through. What a nightmarish day it had been, but at least things were for the most part stable and we decided that we would try and get some sleep after the line was installed. The hospital has a quiet room for parent where you can and go crash for awhile. Its a shared room with about 8 beds in it. Anyway, there was a limit of 1 person per family in it, but we decided that we would just squeeze together in a bed and pretend nobody had told us not too. I was looking forward to just holding Michelle for a few hours and just closing my eyes.
Time went on and on and we were still waiting. Finally the guy showed up and started an assessment on where to place it. It was a real interesting process. He had an ultrasound and would go slowly over Taylor's legs or arms looking for a vein he could use. I am astonished on what some people see in those ultrasounds. My eye eventually saw what he was talking about but only after he showed us a really good example. Regardless, he was not having a whole lot of luck and the assessment went on and on and on. Finally he decided that he would place it in her right arm. He started getting set up for it, when the night took a sudden turn for the worse.
Our RT nurse ran in/out of the room a couple times and we could hear her talking with the doctor in the hall. Taylor's blood gas test had come back and it was not good news. I think her CO2 level in her blood was in the mid 70s and it had risen quickly from the previous test. Our stomachs dropped. This had happened (not to this level) through the night and they had made tweaks and adjustments. The last test showed a droppage that was getting her into normal range and it looked like she was getting to be stable on the ventilator. But the new test revealed just the opposite. The RT ran in saying that "it looked like we had gotten off to a rough start with the ventilator and that they would need to adjust some numbers and give her an albuterol treatment if that was okay with us." Of course, we were just shocked by this and kind of just uttered 'huh?' to which the RT responded that we would have to talk with the doctor. Our stomachs about hit the floor. So we went out to meet the doctor. At that moment another RSV infant was needing to be placed on a ventilator and our doctor couldn't talk. So we went back to our room and the RT nurse just kind of said "oh, that's too bad." I wanted to ring her neck. We had had a previous altercation with her earlier in the night when Michelle had confronted her with being more gentle with the care she gave Taylor. She was defensive about it, and walked away unhappy. Whether or not she was still mad about that or not, I don't know, but I can personally say that she scared the crap out of me and w/out any other information to be found just angered me something fierce. Anyway, she did her thing and they got the albuterol treatment going and then the PIC line guy asked us to leave, because we couldn't be there while they installed the PIC. We left the room just stunned. About all we knew was the stability that we thought we had 10 minutes ago had completely disintegrated and we had no idea why.
We went out to wait in the lobby and basically just fell apart. I think this was around 2 in morning. We held each other for a while and then walked down the hallway to find a spot to sit and wait. We were just kind of walking to walk and not really thinking and we just kind of picked a place to stop for nothing more to just stop and hold each other again. We have been afraid so much during Taylor's life, but this was a level we had never collectively reached. On top of it we were so exhausted and were struggling to even think straight. I have never in my life seen Michelle so scared and sad. And it just tore me up. We were so afraid that Taylor's lungs were too messed up for even the ventilator, and that we were going to lose our baby girl. We just kind of sat down and held each other and cried.
I would say that I'm not believer in signs and stuff like that but those that know me would probably say different. Maybe even readers of this blog would remember how I used to listen to the radio on my way to the hospital before Taylor was born, and how I used to look for meaning in the songs that played on the way. The right series of songs would usually predict a bad night, and a good series of songs would predict a good. At times I would be flipping radio stations and a song would just start up and grab me and I knew it meant something. Silly I know, but I'm weird. I still smile every time I hear Good Vibrations because it was a song I heard several times early on and it made be convinced that things were going to be ok. But, anyway, I digress..
I am really not exactly sure when I first saw it or what drew my eye there. I know I probably was looking right at it for a while not really seeing anything but just kind of trying to deal with emotions. But eventually I saw what was in front of me. The hospital wall of the pediatric unit at Emanuel is playfully painted and they have paintings and pictures that kids have made hanging on it. I hadn't really noticed them before. For whatever reason I focused in one. It was cute little drawing that some little child had done. There was a house and trees and flowers and what looked like a couple people hanging out in front of it. I've seen pictures like this a million times from Haylee and recognize it for exactly what it is. Its the love of family and home through the eyes of the child. I can't really remember if they were all uppercase letters or not (I'm guessing so) but in the sky in this picture above the family and trees and house were the following words:
'TAYLOR TITLE LOVE"
Tears filled my eyes as I looked again and again at it. Looking at some of the other pictures and the little captions next to them and I could tell that it was picture from a child named Taylor and the title of her picture was "Love". I kind of laughed when I figured that out and realized how the child had written down on the picture what he/she was supposed too, but not necessarily in the order he/she was supposed too. I could barely speak and just kind of tapped on Michelle and asked her if she wanted to see a good sign and pointed over to the picture. She smiled. Assuming things get going good I'm going to have to take my camera in and get a picture of that drawing because it made me feel a whole lot better.
We waited for a while. We were shaking with fear and tiredness and from the freezing cold. Apparently they don't heat that part of the building in the middle of the night. Anyway, the doctor finally came out and talked with us. He was concerned about Taylor's progress, and there were things that weren't making sense to him. But he told us that they were making adjustments again and that they would get this figured out. His concerns were that they were using a lot of pressure and a lot of pressure is not a good thing for lungs especially if there had already been air that leaked out. Michelle asked him point blank if she was going to lose her child, and he said no, absolutely not. In all this time, they had never lost an RSV infant and it was going to be Taylor (of course he knocked on wood as he was saying this). He said she was going to get better and that it was just going to take some time. He also said that he was the least experienced of the doctors on the staff and that we would be seeing a new doctor in the morning. He assured us that the staff was top notch and we couldn't be in a better place (right now we believe that as well). He also told us (I'm pretty sure it was then but I'm getting a little foggy on it) that he wouldn't be surprised to see them move Taylor to a different ventilator, because he was concerned about the amount of pressure he was having to apply to her lungs. We talked about other things as well including the RT nurse, and he told us that he had heard we had problems with her and that he personally had told her that he wanted to explain things to us, and to tell us that.
We felt better when he left. The PIC was still being installed and he told us that he would let us know more about that as it went on, and that he would also have another xray done after the PIC was in place to double check the PIC placement and also to see how Taylor's lungs looked again.
Time went by slowly. We were told the PIC placement should only take about 45 minutes. Taylor's in the NICU had taken about 1/2 hour. 45 minutes came and went, and then an hour and then an hour and half, and after about 2 hours the PIC installer came out. He said they had it in place and that it had been really tricky (he later told us that it was the hardest one he had ever installed) because of Taylor's veins. This wasn't a surprise to us. Taylor's had 10 iv placements fail, and even one PIC line as well. Anyway, he said they were wrapping up and would come get us in 10 or 15 minutes. An hour went by before someone came and it was the doctor again. He said they were done with the PIC and the xray showed that the PIC was placed perfectly. He also said though that he was real concerned about something else he was seeing in the xray and wanted to get a CAT scan on Taylor. Whatever was left of my stomach (which wasn't much) simply disintegrated when it hit the floor again. He showed us the xray and told us that he did not totally understand what he was seeing. Along the center of the ribs was an area of something. He wasn't sure if it was liquid, or air, or infection or just RSV stuff. But he wanted to get it checked out. He also told us again that he wouldn't be surprised if they wanted to change to a different ventilator at some future point. But right now he needed to see what the CAT scan showed. They were still cleaning up some stuff on Taylor and wanted to give her a second or two before moving her downstairs for the scan. It would be a while before the full scan results were in although he would be able to some analyses fairly quickly.
It was 5 in the morning and we were beyond wiped out. We needed some sleep so we told them were to find us if something changed and we kissed Taylor good night. You could see that they had several failed attempts of placing the PIC and finally got it. Some of her swelling had gone down by then as well. Anyway, we went to the quite room and after some more talking between us we finally got to sleep.
We were woke up around 8:45 or so by our new RT. He came to tell us that he wanted to switch the ventilator. Taylor's numbers had gotten worse and he did not want to continue with the existing ventilator. He wanted to use a high frequency ventilator. It basically would apply more rapid spurts of air into the lungs. Taylor would still be breathing but her lungs would never really deflate. He said it was a great machine for this purpose and that Emanuel was lucky to have one. He noted that OHSU often gets all the media love, but that it wasn't even an option over there. He was a great guy and tried to make us fell more at ease. The ventilator is heavier, louder and causes vibration. Because of all of the above they would need to keep Taylor even more sedated. Basically she wouldn't be moving at all. He hadn't heard the results of the CAT scan. He left to get it switched over.
We just were sitting there wondering why the nightmare was continuing. We got up, cleaned up a little in the bathroom and then went to Taylor's room. They had switched it over by then. I have to say that on Sunday I was scared to see Taylor once she got the first ventilator. I just had these images in my head on what she would look like and I didn't really want to see. But when we got in there, another feeling overwhelmed me and that was just one of relief because I could see Taylor's lungs were getting a break. That last coughing fit scared the crap out of me. Her lungs had been working so hard.
Anyway, here we were walking in to see her on her new ventilator. This time it hit me and hit me hard. Taylor's head was vibrating and there was the very elaborate, old clunky machine hooked up to her making all sorts of weird sounds. My eyes just filled with tears. Beyond the vibrations from the machines, she was motionless. She looked peaceful, but there were just so many gadgets and tubes and other things hooked up to her that I just wanted to cry. Our poor baby girl. Why did it have to be her? It just broke my heart.
The RT was there and our new nurses and they talked with us and were just great to us. We soon got some good news and that was that the change had helped and her numbers were improving. Taylor had a catheter placed as well because she hadn't peed for a very long time. After it was placed, a lot of urine came out.
We met with the doctor and he seemed really great as well, and had a good one on one conversation with us. He said he thought what he was seeing in the xrays and CAT scans was nothing more unusual than what we already knew. She had some air, and lots of RSV stuff in there. He was concerned that they might need to put a chest tube in to get some air out, but didn't know for sure. He was more concerned about her hematocrit (red blood cell count) levels. He said her levels were low to begin with (not at all unusual for a breastfed baby or a preemie) but that they were getting real low. He said that he was pretty sure she would need a blood transfusion sometime during her stay, and told us about blood donor options.
I told him that we'd love to give blood if we could, but realistically it wouldn't be here in time. Back before Taylor was born, Shanon gave some blood in case Michelle needed it (she never did thankfully). It took several weeks for the process to complete. I told him that we didn't have enough time. He agreed and Michelle later signed a consent form on that.
The doctor also said he was still a little concerned about whooping cough, but that the results wouldn't be in for a day or two. He didn't think so, but had not ruled it out yet. He said it wouldn't be unusual for a bacterial infection to move in on top of RSV, but it wasn't very common.
From that point on things actually started feeling a bit better. Taylor was improving and they were turning down some things on the ventilator. Michelle and myself had previously discussed it and thought it would be best if she went home today and I stayed. But Taylor was so sedated it didn't really seem necessary. I was having a real problem keeping the tears back as well so eventually I decided to go home as well. Michelle would come back up and I would stay with the kids. It was really hard leaving though. Life at home away from a loved in such a condition is extremely hard. The time spent at home when Michelle was in the hospital before Taylor was born was probably some of the hardest moments of my life. Not being there for Taylor when Michelle and myself were rotating was hard as well, but a bit easier because I knew Michelle was there. Today was probably the hardest though. Despite all the negatives that have happened this weekend, there was a positive. I really enjoyed holding Taylor and being with Taylor and not having anything else to focus on but Taylor. I love all our children so much. Just being there with her in my arms felt so good. I would do anything in the world I could to eliminate her pain and discomfort. She is so special to us and I can't imagine her not in our lives.
Anyway, we came home. Michelle went back to the hospital and I've been writing this update. She just called and things are looking up for now. She had another xray and it appears that her pneumothoraxes are essentially gone. She is down some on her oxygen. Her latest hematocrit levels had actually gone up (they are not sure if its lab error) so they have not given her any blood. For the most part nothing real negative. And that's a change in the right in the direction.
I'm not quite sure what the future holds. I of course am still quite scared. Complications can arise in many different forms and fairly easily as well. But for now, today has been a better day. And I'll take that to bed and try to get some much needed sleep, and just hope Taylor continues improving. She'll get better. She just has too.
I think this was around 11 o'clock. They placed a call for the PIC line installers and told us it wouldn't be to long. We were also told that some of the folks who installed it wouldn't mind if we were in the room. We were extremely tired but felt we wanted to be there for Taylor. So we sat with our baby and just tried to put some sense into everything we had gone through. What a nightmarish day it had been, but at least things were for the most part stable and we decided that we would try and get some sleep after the line was installed. The hospital has a quiet room for parent where you can and go crash for awhile. Its a shared room with about 8 beds in it. Anyway, there was a limit of 1 person per family in it, but we decided that we would just squeeze together in a bed and pretend nobody had told us not too. I was looking forward to just holding Michelle for a few hours and just closing my eyes.
Time went on and on and we were still waiting. Finally the guy showed up and started an assessment on where to place it. It was a real interesting process. He had an ultrasound and would go slowly over Taylor's legs or arms looking for a vein he could use. I am astonished on what some people see in those ultrasounds. My eye eventually saw what he was talking about but only after he showed us a really good example. Regardless, he was not having a whole lot of luck and the assessment went on and on and on. Finally he decided that he would place it in her right arm. He started getting set up for it, when the night took a sudden turn for the worse.
Our RT nurse ran in/out of the room a couple times and we could hear her talking with the doctor in the hall. Taylor's blood gas test had come back and it was not good news. I think her CO2 level in her blood was in the mid 70s and it had risen quickly from the previous test. Our stomachs dropped. This had happened (not to this level) through the night and they had made tweaks and adjustments. The last test showed a droppage that was getting her into normal range and it looked like she was getting to be stable on the ventilator. But the new test revealed just the opposite. The RT ran in saying that "it looked like we had gotten off to a rough start with the ventilator and that they would need to adjust some numbers and give her an albuterol treatment if that was okay with us." Of course, we were just shocked by this and kind of just uttered 'huh?' to which the RT responded that we would have to talk with the doctor. Our stomachs about hit the floor. So we went out to meet the doctor. At that moment another RSV infant was needing to be placed on a ventilator and our doctor couldn't talk. So we went back to our room and the RT nurse just kind of said "oh, that's too bad." I wanted to ring her neck. We had had a previous altercation with her earlier in the night when Michelle had confronted her with being more gentle with the care she gave Taylor. She was defensive about it, and walked away unhappy. Whether or not she was still mad about that or not, I don't know, but I can personally say that she scared the crap out of me and w/out any other information to be found just angered me something fierce. Anyway, she did her thing and they got the albuterol treatment going and then the PIC line guy asked us to leave, because we couldn't be there while they installed the PIC. We left the room just stunned. About all we knew was the stability that we thought we had 10 minutes ago had completely disintegrated and we had no idea why.
We went out to wait in the lobby and basically just fell apart. I think this was around 2 in morning. We held each other for a while and then walked down the hallway to find a spot to sit and wait. We were just kind of walking to walk and not really thinking and we just kind of picked a place to stop for nothing more to just stop and hold each other again. We have been afraid so much during Taylor's life, but this was a level we had never collectively reached. On top of it we were so exhausted and were struggling to even think straight. I have never in my life seen Michelle so scared and sad. And it just tore me up. We were so afraid that Taylor's lungs were too messed up for even the ventilator, and that we were going to lose our baby girl. We just kind of sat down and held each other and cried.
I would say that I'm not believer in signs and stuff like that but those that know me would probably say different. Maybe even readers of this blog would remember how I used to listen to the radio on my way to the hospital before Taylor was born, and how I used to look for meaning in the songs that played on the way. The right series of songs would usually predict a bad night, and a good series of songs would predict a good. At times I would be flipping radio stations and a song would just start up and grab me and I knew it meant something. Silly I know, but I'm weird. I still smile every time I hear Good Vibrations because it was a song I heard several times early on and it made be convinced that things were going to be ok. But, anyway, I digress..
I am really not exactly sure when I first saw it or what drew my eye there. I know I probably was looking right at it for a while not really seeing anything but just kind of trying to deal with emotions. But eventually I saw what was in front of me. The hospital wall of the pediatric unit at Emanuel is playfully painted and they have paintings and pictures that kids have made hanging on it. I hadn't really noticed them before. For whatever reason I focused in one. It was cute little drawing that some little child had done. There was a house and trees and flowers and what looked like a couple people hanging out in front of it. I've seen pictures like this a million times from Haylee and recognize it for exactly what it is. Its the love of family and home through the eyes of the child. I can't really remember if they were all uppercase letters or not (I'm guessing so) but in the sky in this picture above the family and trees and house were the following words:
'TAYLOR TITLE LOVE"
Tears filled my eyes as I looked again and again at it. Looking at some of the other pictures and the little captions next to them and I could tell that it was picture from a child named Taylor and the title of her picture was "Love". I kind of laughed when I figured that out and realized how the child had written down on the picture what he/she was supposed too, but not necessarily in the order he/she was supposed too. I could barely speak and just kind of tapped on Michelle and asked her if she wanted to see a good sign and pointed over to the picture. She smiled. Assuming things get going good I'm going to have to take my camera in and get a picture of that drawing because it made me feel a whole lot better.
We waited for a while. We were shaking with fear and tiredness and from the freezing cold. Apparently they don't heat that part of the building in the middle of the night. Anyway, the doctor finally came out and talked with us. He was concerned about Taylor's progress, and there were things that weren't making sense to him. But he told us that they were making adjustments again and that they would get this figured out. His concerns were that they were using a lot of pressure and a lot of pressure is not a good thing for lungs especially if there had already been air that leaked out. Michelle asked him point blank if she was going to lose her child, and he said no, absolutely not. In all this time, they had never lost an RSV infant and it was going to be Taylor (of course he knocked on wood as he was saying this). He said she was going to get better and that it was just going to take some time. He also said that he was the least experienced of the doctors on the staff and that we would be seeing a new doctor in the morning. He assured us that the staff was top notch and we couldn't be in a better place (right now we believe that as well). He also told us (I'm pretty sure it was then but I'm getting a little foggy on it) that he wouldn't be surprised to see them move Taylor to a different ventilator, because he was concerned about the amount of pressure he was having to apply to her lungs. We talked about other things as well including the RT nurse, and he told us that he had heard we had problems with her and that he personally had told her that he wanted to explain things to us, and to tell us that.
We felt better when he left. The PIC was still being installed and he told us that he would let us know more about that as it went on, and that he would also have another xray done after the PIC was in place to double check the PIC placement and also to see how Taylor's lungs looked again.
Time went by slowly. We were told the PIC placement should only take about 45 minutes. Taylor's in the NICU had taken about 1/2 hour. 45 minutes came and went, and then an hour and then an hour and half, and after about 2 hours the PIC installer came out. He said they had it in place and that it had been really tricky (he later told us that it was the hardest one he had ever installed) because of Taylor's veins. This wasn't a surprise to us. Taylor's had 10 iv placements fail, and even one PIC line as well. Anyway, he said they were wrapping up and would come get us in 10 or 15 minutes. An hour went by before someone came and it was the doctor again. He said they were done with the PIC and the xray showed that the PIC was placed perfectly. He also said though that he was real concerned about something else he was seeing in the xray and wanted to get a CAT scan on Taylor. Whatever was left of my stomach (which wasn't much) simply disintegrated when it hit the floor again. He showed us the xray and told us that he did not totally understand what he was seeing. Along the center of the ribs was an area of something. He wasn't sure if it was liquid, or air, or infection or just RSV stuff. But he wanted to get it checked out. He also told us again that he wouldn't be surprised if they wanted to change to a different ventilator at some future point. But right now he needed to see what the CAT scan showed. They were still cleaning up some stuff on Taylor and wanted to give her a second or two before moving her downstairs for the scan. It would be a while before the full scan results were in although he would be able to some analyses fairly quickly.
It was 5 in the morning and we were beyond wiped out. We needed some sleep so we told them were to find us if something changed and we kissed Taylor good night. You could see that they had several failed attempts of placing the PIC and finally got it. Some of her swelling had gone down by then as well. Anyway, we went to the quite room and after some more talking between us we finally got to sleep.
We were woke up around 8:45 or so by our new RT. He came to tell us that he wanted to switch the ventilator. Taylor's numbers had gotten worse and he did not want to continue with the existing ventilator. He wanted to use a high frequency ventilator. It basically would apply more rapid spurts of air into the lungs. Taylor would still be breathing but her lungs would never really deflate. He said it was a great machine for this purpose and that Emanuel was lucky to have one. He noted that OHSU often gets all the media love, but that it wasn't even an option over there. He was a great guy and tried to make us fell more at ease. The ventilator is heavier, louder and causes vibration. Because of all of the above they would need to keep Taylor even more sedated. Basically she wouldn't be moving at all. He hadn't heard the results of the CAT scan. He left to get it switched over.
We just were sitting there wondering why the nightmare was continuing. We got up, cleaned up a little in the bathroom and then went to Taylor's room. They had switched it over by then. I have to say that on Sunday I was scared to see Taylor once she got the first ventilator. I just had these images in my head on what she would look like and I didn't really want to see. But when we got in there, another feeling overwhelmed me and that was just one of relief because I could see Taylor's lungs were getting a break. That last coughing fit scared the crap out of me. Her lungs had been working so hard.
Anyway, here we were walking in to see her on her new ventilator. This time it hit me and hit me hard. Taylor's head was vibrating and there was the very elaborate, old clunky machine hooked up to her making all sorts of weird sounds. My eyes just filled with tears. Beyond the vibrations from the machines, she was motionless. She looked peaceful, but there were just so many gadgets and tubes and other things hooked up to her that I just wanted to cry. Our poor baby girl. Why did it have to be her? It just broke my heart.
The RT was there and our new nurses and they talked with us and were just great to us. We soon got some good news and that was that the change had helped and her numbers were improving. Taylor had a catheter placed as well because she hadn't peed for a very long time. After it was placed, a lot of urine came out.
We met with the doctor and he seemed really great as well, and had a good one on one conversation with us. He said he thought what he was seeing in the xrays and CAT scans was nothing more unusual than what we already knew. She had some air, and lots of RSV stuff in there. He was concerned that they might need to put a chest tube in to get some air out, but didn't know for sure. He was more concerned about her hematocrit (red blood cell count) levels. He said her levels were low to begin with (not at all unusual for a breastfed baby or a preemie) but that they were getting real low. He said that he was pretty sure she would need a blood transfusion sometime during her stay, and told us about blood donor options.
I told him that we'd love to give blood if we could, but realistically it wouldn't be here in time. Back before Taylor was born, Shanon gave some blood in case Michelle needed it (she never did thankfully). It took several weeks for the process to complete. I told him that we didn't have enough time. He agreed and Michelle later signed a consent form on that.
The doctor also said he was still a little concerned about whooping cough, but that the results wouldn't be in for a day or two. He didn't think so, but had not ruled it out yet. He said it wouldn't be unusual for a bacterial infection to move in on top of RSV, but it wasn't very common.
From that point on things actually started feeling a bit better. Taylor was improving and they were turning down some things on the ventilator. Michelle and myself had previously discussed it and thought it would be best if she went home today and I stayed. But Taylor was so sedated it didn't really seem necessary. I was having a real problem keeping the tears back as well so eventually I decided to go home as well. Michelle would come back up and I would stay with the kids. It was really hard leaving though. Life at home away from a loved in such a condition is extremely hard. The time spent at home when Michelle was in the hospital before Taylor was born was probably some of the hardest moments of my life. Not being there for Taylor when Michelle and myself were rotating was hard as well, but a bit easier because I knew Michelle was there. Today was probably the hardest though. Despite all the negatives that have happened this weekend, there was a positive. I really enjoyed holding Taylor and being with Taylor and not having anything else to focus on but Taylor. I love all our children so much. Just being there with her in my arms felt so good. I would do anything in the world I could to eliminate her pain and discomfort. She is so special to us and I can't imagine her not in our lives.
Anyway, we came home. Michelle went back to the hospital and I've been writing this update. She just called and things are looking up for now. She had another xray and it appears that her pneumothoraxes are essentially gone. She is down some on her oxygen. Her latest hematocrit levels had actually gone up (they are not sure if its lab error) so they have not given her any blood. For the most part nothing real negative. And that's a change in the right in the direction.
I'm not quite sure what the future holds. I of course am still quite scared. Complications can arise in many different forms and fairly easily as well. But for now, today has been a better day. And I'll take that to bed and try to get some much needed sleep, and just hope Taylor continues improving. She'll get better. She just has too.
Sunday, February 8, 2009
A really hard day
Taylor was transported today from Salmon Creek to the Pediatric Intensive Care Unit at Emanuel hospital. She is on a ventilator, and may need chest tubes. Her left lung collapsed and she has a Pneumothorax for sure in that lung, and may have another in her right lung. She had a central line in place in upper left shoulder area, and is on all sorts of medicine. To be honest, I'm a bit lost on what all she is getting. She is extremely sedated. One of the drugs (I think it is Midazolam) essentially sedates her and also makes it so she can't remember anything. My understanding is that Taylor would still be mentally aware though, so she is on other drugs (morphine-type) to just knock her out. She does feel pain though and she gets very distressed when they suction her. Right now both Michelle and myself are the hospital with her, and I'm writing this from her room.
We were prepared for things to get worse, but not this. We are full of all forms of emotions, from shock to anger to just plain sadness for our baby girl. Taylor got worse Friday and Saturday. We were told this would happen. RSV typically peaks at 5-7 days. I've been staying at the hospital with Michelle since Friday night, trying to give her a break. She was and still is quite exhausted. Taylor had bouts of uncontrollable coughing. If would take a lot of work to get her calm. The coughing would also cause Taylor to gag and throw up. She was put on a cannula on Thursday, and on Friday it was changed from just oxygen to the high flow cannula. Friday morning she had a really bad bout of coughing and it started turning more to something that resembled a spasm, than Taylor just trying to cough. They started talking on Friday that they might need to move her Emanuel because they didn't have intensive care there and they were starting to get concerned that she might need more care than they could provide. Michelle asked many times about the spasm cough, and we were told by many people that it was what babies sounded like RSV.
They started giving Taylor treatments of albuterol. Its an asthma medicine used to help get the coughing under control. They administered it on a schedule whether Taylor was coughing or not. At times it was effective. It did seem to work at times to get the coughing under control. At other times, Taylor would be resting peacefully and be given it and the start coughing. Michelle finally had enough and told them she did not want unless Taylor was coughing. The medicine also cause Taylor to get sick and several times after the treatment she vomited. They were not coughing/gag related but just horrible projectile vomiting.
Anyway, Saturday evening Taylor started coughing really bad and Michelle told them to go ahead and administer a treatment. They were short staffed (there is an outbreak of RSV and influenza right now), and there were also deliveries occurring. Anyway, it took them hours to get there and get it done. Later that night, I was holding Taylor and commented to Michelle how I did not like the way Taylor was breathing. She was working harder than I have ever seen. We called the nurses, respiratory therapist and doctor to look at her. You could tell they were kind of worried, but also reassured us this was par for the course with RSV. But Taylor was also getting real dependent on oxygen and they kept having to turn it up, not down.
Throughout the night, the RT nurse made several comments though that indicated she thought it more than standard RSV. She had made one comment about Taylor having to do the albuterol treatments for a lot longer. I asked how many days and she said she thought 4 or 5. She also asked when the last time Taylor had an x-ray. You could tell that she was bothered. But she was also in/out because she was so very busy with other kids.
Sunday morning the doctor order a x-ray. Taylor was having another bad coughing spell, and the doctor was preparing us that we would probably need to be moved. She came in later and told us that the x-ray showed there was stuff in the lungs and they would need to transport Taylor to Emanuel. In the meantime they wanted to get an iv going, and other stuff. Once again Taylor's veins proved a hard challenge. They tried twice on the head and failed. So they waited for the transport team to do it. The transport team went through 2 veins on the arms and one in the leg and then gave up. The nurse at Emmanuel nailed it on the first attempt.
Anyway, we got over to Emmanuel and they checked Taylor out. The doctor called us in and showed us the x-ray and said it was not what he was told. He showed us where the lung collapsed and he showed us how the left lung was trying to compensate by filling in the space. He said he thought it was a result of excessive coughing, but also told us later that it was very rare (he had only seen it one other time due to RSV). He also showed us where he thought there might be air. He kept Taylor on CPAP (Taylor had been put back on it for transfer), had her positioned on her side and had RT do some therapy on her to try and break up some of the mucus. After his therapy they sucked some of the stuff out and Taylor started coughing uncontrollably again. She was working extremely hard, and it was obvious to everyone that she needed more help.
So the doctor ordered her being put on a ventilator. He also wanted to place a central line at the same time, because the iv wouldn't be enough for all the narcotics. With very heavy hearts, Michelle and myself left the room (we couldn't be there).
Taylor has come so far. She's suffered through more stuff in her short little life than most people do in a lifetime. It so unfair that we just came back full-circle to what was our biggest nightmare when she was born and that was her having to be on a ventilator. It is a lot different between a gestanional 2 month old and a 28 weeker. The oxygen and respirator concerns are still very worrisome but not as much. But it is still incredibly scary, and I just want my daughter back healthy and happy like she was just 1 week ago. I cried when I heard she was going back on CPAP. Now I can't wait for her to get back off the ventilator and back to CPAP.
It feels like I failed Taylor. Its just not fair for her to be going through this. We were so careful when we got her out of the hospital. We would not go places, nor have anyone over who had been sick. Time went on and she was doing so good and soon we took her a restaurant or a movie, etc.. Haylee and Tristan would catch a cold or something but Taylor was fine. We started relaxing. I am very mad at myself for doing that. I should have been watching out for Taylor more. I know you can't dig a hole in the mountain and hole up for 2 years. It is not possible. But we shouldn't have relaxed. Maybe in the end you can't prevent it, but we should have been more restrictive with our choices.
Here we are again in the hospital with our poor little girl hooked up to all sort of crap. And here we are again feeling completely powerless and just hoping beyond hope that she's going to be all right. We can't lose her! And we shouldn't even have that thought in our head. She's at the peak of RSV and she will get better. Yesterday I told Taylor that. I told her that the worse was behind her and that she was going to wake tomorrow and feel better. And there was a time this morning when she woke up hungy sleeping on me that I thought she looked better and a smiled and I told her see I told you... And now I am sitting here looking at her completely motionless hooked up to a ventilator. And I haven't a clue if really will be all right. It should be, but we are just in this rotten streak of bad luck that we haven't been able to climb out.
Here we are again with our lives disrupted and having to try to figure out how to be here for Taylor while at the same time being there for Tristan and Haylee. We are probably going to be here in the hospital for 2 more weeks at least. And Tristan and Haylee are once again confused and just wanting us all home. Leona (the kids pony) died in December. Sabrina, Tristan's dog, recently died (after a couple weeks of us really trying to help save her) and it really affected Tristan.. He's had a rough time with it and he's asked Michelle if Taylor is going to die like Sabrina did. Man... Its so freaking frustrating....
I'll post more on this later. Taylor's central line has failed and we are waiting on a PIC line to be placed. We need to try and get some sleep after that. Some good news is that so far it doesn't look like she will need the chest tubes. Anyway, more soon.
Wednesday, February 4, 2009
Back in the hospital
Unfortunately, Taylor was admitted to the hospital today. I just got back from Salmon Creek, which is the hospital where Taylor was born and where she stayed in the NICU. Michelle is staying with her. Taylor was admitted for observation right now. She was confirmed as having RSV.
RSV is a common cold virus and it is one that has been going round (Taylor was not the only child being admitted tonight with RSV). We are pretty sure Haylee got it first a couple weeks ago, and then Tristan and now Taylor. It hit both Haylee and Tristan hard at first. They had fevers and bad colds. Haylee got over it fairly quickly, but Tristan was hit harder. Usually Haylee gets the colds harder, so we figure this must be Tristan's first exposure to it as well.
Taylor first showed signs Monday evening. She seemed to have a sore throat. Since then she has been getting progessively worse. Yesterday and through the night last night she would drink milk, and then start coughing, gag, and then spit up. She's not dehydrated, but it is something that has been worrying us. She is coughing hard, and can barely cry. She is very hoarse. It breaks your heart to hear her cry.
Dr. Michelle diagnosed her with RSV yesterday. Personally, I think she's taking this "mom knows best" thing a bit too far. I, of course, have never heard of RSV. Michelle had too explain it to me in layman's terms. "It is a bad cold", she said.
"Oh, a bad cold. I get that," I said. I'm not a complete idiot in these things. "Cold + premie = high risk".
It is the one thing we have tried so hard to avoid since we left the hospital. I can't stand gooey things on my hands, but even I have drowned my hands in sanitizer goo any time we go some place. And too think of the lectures I have given: "Yes, we'll come visit you on Christmas but ONLY if no one is sick nor has been sick for the last 3 years. We can not possibly risk Taylor getting sick and ending back in the hospital!"
We were sticklers to the rules! And through all of this Taylor grew and was healthy. And over time the rules weren't as restrictive. What is a parent to do anyway? You can't keep your kids locked up. And if things are going well, well your thought pattern changes. And all of sudden you hear the news! One of your children was with a friend who had a friend, sibling, teacher or parent who got really sick. And it is always after the fact. What can a parent possibly do about it?
And yet there we were tonight. A different room on a different floor on a different wing, but it all seemed strangely the same. The numbers on the monitor displaying the same vitals. The same problems with pulse oximeter. Our poor child on a strange matress sitting on a strange crib within a strange room. The feeling hanging heavy on you that you have lost control to some stranger you have yet to even meet. And to top it off the nurses and doctors draped in protective aprons and masks so they wouldn't carry the "infection" to other patients. And, even worse, they suggest that you do the same!
Michelle had not had dinner and wanted a milkshake from the cafetaria. It was a special order, but she knew they would know what she was talking was about. I set out to find the cafetaria. I had never been in this room, this floor, this wing, nor had I talked to anyone about it. But yet, it only took me a minute to figure out how to get to the cafetaria. Good design, possibly, or just way too much time spent in a place I had hoped I would never see again.
Here I am again just writing. I'm writing to keep friends and family aware. This will get worse before it gets better, I'm told. I'm writing this for Taylor. What a bit of history this poor child has too read some day. I'm writing this for others, who may unfortunately experience these nightmares themselves someday. But most of all I write this because I have to. I had to leave, once again, two of the four most important people in my life. I need to be here for Tristan and Haylee, but I can't be there for Michelle nor Taylor. My poor little princess. She had tears in her eyes when I saw her last. I know she will get better, because I know she's a stubborn fighter. To some extent I fear that she has even more spunk than her mom. That is really scary, but on the same token re-assuring. I know Taylor will be fine, but I can't help to be a bit scared. We have come so far...
RSV is a common cold virus and it is one that has been going round (Taylor was not the only child being admitted tonight with RSV). We are pretty sure Haylee got it first a couple weeks ago, and then Tristan and now Taylor. It hit both Haylee and Tristan hard at first. They had fevers and bad colds. Haylee got over it fairly quickly, but Tristan was hit harder. Usually Haylee gets the colds harder, so we figure this must be Tristan's first exposure to it as well.
Taylor first showed signs Monday evening. She seemed to have a sore throat. Since then she has been getting progessively worse. Yesterday and through the night last night she would drink milk, and then start coughing, gag, and then spit up. She's not dehydrated, but it is something that has been worrying us. She is coughing hard, and can barely cry. She is very hoarse. It breaks your heart to hear her cry.
Dr. Michelle diagnosed her with RSV yesterday. Personally, I think she's taking this "mom knows best" thing a bit too far. I, of course, have never heard of RSV. Michelle had too explain it to me in layman's terms. "It is a bad cold", she said.
"Oh, a bad cold. I get that," I said. I'm not a complete idiot in these things. "Cold + premie = high risk".
It is the one thing we have tried so hard to avoid since we left the hospital. I can't stand gooey things on my hands, but even I have drowned my hands in sanitizer goo any time we go some place. And too think of the lectures I have given: "Yes, we'll come visit you on Christmas but ONLY if no one is sick nor has been sick for the last 3 years. We can not possibly risk Taylor getting sick and ending back in the hospital!"
We were sticklers to the rules! And through all of this Taylor grew and was healthy. And over time the rules weren't as restrictive. What is a parent to do anyway? You can't keep your kids locked up. And if things are going well, well your thought pattern changes. And all of sudden you hear the news! One of your children was with a friend who had a friend, sibling, teacher or parent who got really sick. And it is always after the fact. What can a parent possibly do about it?
And yet there we were tonight. A different room on a different floor on a different wing, but it all seemed strangely the same. The numbers on the monitor displaying the same vitals. The same problems with pulse oximeter. Our poor child on a strange matress sitting on a strange crib within a strange room. The feeling hanging heavy on you that you have lost control to some stranger you have yet to even meet. And to top it off the nurses and doctors draped in protective aprons and masks so they wouldn't carry the "infection" to other patients. And, even worse, they suggest that you do the same!
Michelle had not had dinner and wanted a milkshake from the cafetaria. It was a special order, but she knew they would know what she was talking was about. I set out to find the cafetaria. I had never been in this room, this floor, this wing, nor had I talked to anyone about it. But yet, it only took me a minute to figure out how to get to the cafetaria. Good design, possibly, or just way too much time spent in a place I had hoped I would never see again.
Here I am again just writing. I'm writing to keep friends and family aware. This will get worse before it gets better, I'm told. I'm writing this for Taylor. What a bit of history this poor child has too read some day. I'm writing this for others, who may unfortunately experience these nightmares themselves someday. But most of all I write this because I have to. I had to leave, once again, two of the four most important people in my life. I need to be here for Tristan and Haylee, but I can't be there for Michelle nor Taylor. My poor little princess. She had tears in her eyes when I saw her last. I know she will get better, because I know she's a stubborn fighter. To some extent I fear that she has even more spunk than her mom. That is really scary, but on the same token re-assuring. I know Taylor will be fine, but I can't help to be a bit scared. We have come so far...
Sunday, January 4, 2009
New Pictures
I apologize for not updating this for a while. With the holidays, winter storms, returning to work (with a vengeance), adjusting to our new life, and trying to maintain life in a sleep-deprived world (we wish we would have brought home a night nurse with us), the blog has suffered.
Taylor is doing so well. She's just a normal little baby girl. Her life is pretty much eating and sleeping. She has her occasional bouts where I swear she's downed a couple cups of coffee or something and seems wired. She's so alert and in to her surroundings. Michelle made the comment the other day where she thought that Taylor was reaching a new stage of alertness. It seems to be true. Tonight she reached out and grabbed one of her toys on the bouncer for the first time. She did it again a little bit later. We both think she's getting close to that stage now where she's going to start smiling all the time.
Taylor's first Christmas has come and gone. It was a very weird Christmas this year. Winter hit us hard this year. It snowed hard for two weeks prior to Christmas and we STILL have a lot of snow on the ground and it was snowing again tonight. We lost power Christmas Eve, and didn't get it back until several days later. It made Christmas interesting, that's for sure. I would never had guessed that the kids and I would be sick of snow, but we all pretty much are. Well, all except Haylee who seems to have a new fondness for it now as school might get canceled in the morning (3 weeks at home - you'd think she would be ready to go back).
It was w/out a doubt though a Christmas to remember. We are so fortunate and feel so blessed. When all of this started, all I could think of about was how I couldn't wait for Christmas and how it was going to be such a special Christmas. With the storms and lack of power, it wasn't exactly how I had envisioned it, but it was a great Christmas. I couldn't ask for anything more than our family being together, happy and healthy!
Anyway, I updated the Picasa album with some new pictures. There's even some photos from the day we left the hospital.
Taylor is doing so well. She's just a normal little baby girl. Her life is pretty much eating and sleeping. She has her occasional bouts where I swear she's downed a couple cups of coffee or something and seems wired. She's so alert and in to her surroundings. Michelle made the comment the other day where she thought that Taylor was reaching a new stage of alertness. It seems to be true. Tonight she reached out and grabbed one of her toys on the bouncer for the first time. She did it again a little bit later. We both think she's getting close to that stage now where she's going to start smiling all the time.
Taylor's first Christmas has come and gone. It was a very weird Christmas this year. Winter hit us hard this year. It snowed hard for two weeks prior to Christmas and we STILL have a lot of snow on the ground and it was snowing again tonight. We lost power Christmas Eve, and didn't get it back until several days later. It made Christmas interesting, that's for sure. I would never had guessed that the kids and I would be sick of snow, but we all pretty much are. Well, all except Haylee who seems to have a new fondness for it now as school might get canceled in the morning (3 weeks at home - you'd think she would be ready to go back).
It was w/out a doubt though a Christmas to remember. We are so fortunate and feel so blessed. When all of this started, all I could think of about was how I couldn't wait for Christmas and how it was going to be such a special Christmas. With the storms and lack of power, it wasn't exactly how I had envisioned it, but it was a great Christmas. I couldn't ask for anything more than our family being together, happy and healthy!
Anyway, I updated the Picasa album with some new pictures. There's even some photos from the day we left the hospital.
Tuesday, December 2, 2008
Thank You
This was supposed to be posted on Thanksgiving, but I never got it done and I just got back to it. Anyway, there's so many people to thank...
On a personal level I have to thank Michelle. I felt so bad for everything you went through. It was hard on you physically. It was hard on you mentally. I know it was killing you when you couldn't be there for Haylee and Tristan. I know it was hard to be inside during summer. I know how hard it was when Taylor was born early despite all your effort. You are the most incredible woman I know and our kids are so lucky to have you for their mom. I am so lucky to have you as my wife. I love you.
First and foremost, thank you and everybody else that has been reading this blog and everybody that has been praying for Michelle and Taylor and everybody else that has kept us in their thoughts. We have heard from numerous people that there have been prayer groups all around the world for Taylor. We are humbled and very appreciative. Thank you.
Secondly thanks to Dr. Fred Coleman and the Maternal Fetal Medicine specialists at Salmon Creek Hospital and Emanuel Hospital. Michelle and myself realize that there were a lot of doctors and staff that helped Taylor through it all, but without Dr. Coleman we feel that Taylor wouldn't be here today. He not only performed a miracle with the cerclage, but got Michelle from 20 weeks to 28 weeks. That was not something that came easy, and something that a lot of other doctors did not believe would happen. Not only did he save our daughters life, but we feel that we gained a friend through it all. And we will make sure to get him and his daughters out this spring for riding, assuming we can convince our lazy horses that they are supposed to work still.
Thanks to Dr. Vincent for helping take care of Michelle before delivery and helping Dr. Coleman with the delivery. Your love for the kids delivered at your hospital is amazing. It was incredible to see how often you checked on Taylor even when she wasn't in your care anymore, and we hear that it is not unusual for you to be visiting all the kids in the NICU.
Thanks to Dr. Freitag, Dr. Larrabee, Dr. Mischel and the other doctors at Northwest Newborn Specialists. You all did an amazing job with Taylor. We also are very appreciative that you put up with us and listened to our concerns and thoughts and made adjustments when you felt they were appropriate. It is very difficult being a parent of a newborn baby in the NICU, and you helped us feel like we were a part of her care.
Thanks to the nursing staff of Emanuel Hospital and Salmon Creek Hospital. We are very grateful for the care and support you provided to Michelle and Taylor. So many of you became our friends, and we miss you and can't wait to bring Taylor around sometime so you can see her. To L&D and the Family Birth Center groups, thank you for taking care of Michelle through some very trying times, and for helping her pass the time while she was feeling better but on bed rest. To the NICU staff, we are eternally grateful not only for your care of Taylor but for educating us and helping us from going crazy. Thanks for putting up with us being there around the clock.
To the staff of Salmon Creek Hospital, thank you. We came to Salmon Creek because of the family care approach and because the NICU had individual rooms for the babies and their families. It was a very trying time for us, but I can't even imagine what it would have been like in other NICUs. When we heard about Salmon Creek, we knew we needed to be there. We hoped Taylor wouldn't need to spend any time in the NICU, but just in case, we knew we needed to be there for her. I realize that not every baby has family members in their room 24 hours a day like ourselves, and at times it can be trying to the staff, but thank you for allowing us to do that. We are convinced that it made a huge difference for Taylor and ourselves.
Special thanks to Michelle's family for rotating with me when Michelle was in the hospital. I always felt so divided during those times. I wanted to be home with the kids, but was worried sick about Michelle as well. The only way I personally got through it all was having somebody with Michelle when I was at home with the kids. I know it really helped Michelle as well, especially after some of those really scary nights we had. Thanks to everyone that came and visited Michelle during the day. It was a trying time for her, and your company was very appreciated.
Thanks to everybody that helped out with Haylee and Tristan. I know Haylee enjoyed her time rotating between everyone, and Tristan might not have admitted it if you asked him but I think he enjoyed it some as well (especially hanging out with Aidan and Aislinn and Aunt Cindy). I can not thank everyone enough for your help with them. Special thanks to Shanon and Juan for you staying at our house with Haylee and Tristan. Having Haylee and especially Tristan at home was a huge deal for us. We owe both of you so much for staying with them, helping them get to school once school started, helping Haylee get her homework done, helping around the house, etc.. I could go on and on...
We and Taylor thank everyone that came and stayed with Taylor and allowed us to be at home for a while. In particular we thank Mary for spending so much time with Taylor. Just being able to leave for a while and get a few things done at home, or being home for a night made such a huge difference to us.
Thanks to my mom, dad, and Casey for dog-sitting. I can't wait to see Lizzie tomorrow.
Thanks to grandma for keeping the kids and myself fed well. I swear I can cook, but thanks to you Tristan and Haylee did not have to tell me otherwise.
Thanks to Tonya for keeping the faith, spreading the word around the world, and your constant encouragement. I thought you were kind of crazy for sending that baby dress when Michelle first went in the hospital, but you never gave up on Taylor and we appreciate that. Taylor is awaiting news of the arrival of her new cousin.
Thanks to my work for being so supportive. I am very fortunate to be working with such great people. Thank you for giving me the flexibility I needed through all of this.
Thanks to Haylee and Tristan. We are sorry things got so crazy for you and that life was so confusing and messed up for such a long time. You both handled it very well and we are so proud of you and love you both. Your little sister owes you one, and so does mom and dad.
On a personal level I have to thank Michelle. I felt so bad for everything you went through. It was hard on you physically. It was hard on you mentally. I know it was killing you when you couldn't be there for Haylee and Tristan. I know it was hard to be inside during summer. I know how hard it was when Taylor was born early despite all your effort. You are the most incredible woman I know and our kids are so lucky to have you for their mom. I am so lucky to have you as my wife. I love you.
Last but not least, we have to thank Taylor. The one constant thing through this incredible trip we were on was this healthy, feisty little girl with a spirit that could not be denied. Your spirit is kind of scary actually.. ;-) You amazed us throughout the pregnancy and throughout the stay in the NICU. You continue to amaze us everyday and we are so happy to have you home. We love you so much.
Monday, November 24, 2008
Home Sweet Home
We are home!
I'll send out updates later. Just wanted to let everyone to know that Taylor is home and adjusting to her new much crazier life.
I'll send out updates later. Just wanted to let everyone to know that Taylor is home and adjusting to her new much crazier life.
Sunday, November 23, 2008
SHE PASSED!!!!
She just passed her car seat test!!!
We are all set to go home tomorrow!!!
Yes! Yes! Yes!
WhooHoo!
We are all set to go home tomorrow!!!
Yes! Yes! Yes!
WhooHoo!
Day 60
Taylor is now 5 lbs 3oz. She has had a very good week and has had no major problems since Monday and no longer has her feeding tube. She is completely on breast-milk (via the bottle most of the time) and eating more than her goals. Her stomach problems are starting to pass (pardon the pun) and her poop has turned more runny (although today she still hasn't pooped since this morning when she went through 3 diapers). She had her oxygen monitor removed yesterday.
Basically we are ready to go home! Taylor has one more test though that is in front of her. She needs to sit in a car seat for an hour with her oxygen levels above 90%. She has failed this test twice now. On Thursday it was over quickly. On Friday she was in the car seat for 2 hours but still couldn't pass getting 3 of 7 bad marks (she was below 90% 3 of the 7 times they took a snapshot).
We have been having lots of conversations with the doctors. Conversations have been about:
- Will she be going home on fortification or not - she will not it appears
- When will she be going home - Saturday, no Sunday, no Tuesday, no Monday...
- Will she be using the slow-flow nipple when bottle fed or the regular - the slow-flow
- Will she have another eye test before going home - we refused
- Will she be going home on a heartrate monitor - one doctor said yes, the other said no and we have a monitor ready to go just in case
- Will she be lying on her back at home - doctor says yes, we say no
- Michelle discussed some sterilization problems with the formula and the main doctor promises they will look into it
The car seat is the last issue. If she fails the test (she will be having one tonight soon), they will be ordering a car bed for her to be installed in our truck. This will allow us to take her home, but she will still need to past a test on that. She should be able to do that as she will be lying down just like in a bed. If she gets the car bed, she'll need to come back in a couple weeks to get the car seat test again so she can stop using the car bed. I don't know. I have a good feeling about tonight's test. There are some things they can do to help position her a bit better and we'll try that tonight.
Unless something completely unexpected happens we are GOING HOME TOMORROW!!!
This is turning out to be a great week. I now own a copy of Guns 'N Roses Chinese Democracy (an album I have been waiting 15 years for), the Beavers will go the Rose Bowl if they beat Oregon on Saturday, and Taylor and Michelle are coming home. Throw in Thanksgiving on top of it, and its going to one incredible week!
Its almost unbelieveable that this ride may be over tomorrow. A new chapter will begin and our family will be together at home. Its very exciting.
There are new pictures on the slideshow.
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