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.

SHE PASSED!!!!

She just passed her car seat test!!!

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.

More Progress and a Major Major Scare

Yesterday they moved Taylor out of her fancy expensive bed and into a crib. It is quite strange seeing her in small crib (its tall so that she's at waist height), but also very cool. It could be a nicer crib. Its all metal and kind of looks like a cage, but it looks a lot less scary than the other bed she was in.

She is now 4 lbs and 13 oz.

I brought Tristan in today (after school) to the hospital so that I could go to work for a while. While I was in there Taylor's sat level were 98 - 100 and I commented to Michelle how awesome she was doing and she said that she had been doing that good since last night. It was very encouraging. I had brought Taylor's car seat with me, but didn't bring it in that time. This evening I decided to, figuring that maybe it would add some good mojo to the room and give Taylor some encouragement to get this thing in gear so that we could get out of there this week. I was further encouraged to see that they were no longer monitoring her oxygen saturation levels! Another huge step! Michelle said that they removed the monitor an hour or two before I got there.

I was hungry and decided to have a french fry (Michelle had told me there was food for me). It needed salt so I pulled open the salt packet and started shaking it all out over the fries. After a little shaking I thought to myself "man this is a huge salt packet" and then realized I was using Sugar. Oops! Then Michelle pointed out that "I just ruined her dinner and that my dinner was over on the day bed". Double oops!

Anyway, as always my timing is impeccable and Tristan had to go to the bathroom. I took him down there and stood waiting forever for him. He was wanting me to sing songs with him as he sat on the toilet. I told him that my time was very limited with mom and I wanted to see her for just a little bit, and that we needed to get going because we still had to get Haylee and get them home for bedtime. He told me that he "needed to sing, because otherwise he was going to fall asleep." :-) Apparently the day at the hospital wore him out. Anyway we were in there for what seemed like hours, but was probably just 1/2 hour to 45 minutes. He finally finished, and we headed back.

I saw that the door to Taylor's room was open and the light outside the room was off which meant no nurse was in there. I thought that was pretty strange as the door is normally shut (our preference). I got a big shock when I rounded the corner and there was a nurse (sometimes their tracking devices don't always work right) and a doctor hovered over Taylor and Michelle was kind of standing back. My heart sunk. I haven't seen a doctor in the room for a very long time except on scheduled visits. The doctor was listening to Taylor with a stethoscope. Michelle turned to me and said "It was bad. We are very lucky we are here tonight!" and the nurse looked over and agreed.

Michelle was eating her "sweet potatoes" when Taylor's heart rate alarm went off. Its not unusual of course so at first she wasn't worried and just got up and started talking to Taylor. Then Taylor's heart rate just kept going down and down, and the nurse ran in. The nurse soon asked Michelle to get another nurse and then they called for the doctor. Michelle said Taylor "looked dead". She turned gray and if it wasn't for the monitor still showing a heart rate, Michelle said she would have freaked. Taylor was pretty much lifeless except for the occasional real shallow breath. One nurse started giving her oxygen and the other started suctioning. They suctioned a small amount of milk up. Taylor slowly started recovering.

Apparently she had burped up some milk. They had her on her back like they do at times and when she burped up she basically asphyxiated on it. Which is why our kids don't sleep on their backs at home. Of course, this goes against everything they say about SIDS but... Anyway, she got her oxygen monitor back on and her sat levels and her heart rate slowly climbed back up. They were worried that some got in her lungs (remember that when she got that water dose a while back how much it set her back), but thankfully they didn't and still don't hear any sign of that. Anyway, it was a major scare. Michelle told me later tonight that she thinks Taylor would have died if she was at home, as we would never have known something was wrong until too late. Its certainly a reminder of just fragile she is.

Tristan and myself had to leave soon after that. What a horrible way for the night to end. I felt very bad for not being there (Michelle was very happy Tristan was not), and it was hard to leave. I left the car seat in there but with a lot less hope that it would be used this week. Perhaps Taylor saw it and got scared or something...

Michelle is kind of guessing that it will be next Monday before Taylor is discharged. Our main doctor won't be back now until the weekend and told Michelle he was betting we'd still be there. But who knows...

Michelle had lactation come by again today and they again told her she's doing everything perfect. After hearing everything from Michelle about how nursing has been going, they're concerned that Taylor already is getting nipple confusion and don't want her getting bottles until after trying to breast feed every time. So the plan is to breast feed, then bottle feed, then give her what's left through her feeding tube. They also told Michelle that Taylor is putting her tongue to the top of her mouth and this is typical for her age, but it is also why she is struggling breast feeding right now. She could snap out of it at any time, or it still may take her a couple months before everything clicks. The lactation lady had also had a preemie and she said that it wasn't until 1 month after her baby was full term before their problems ended. I certainly hope not. Otherwise I'm going to have to buy a huge walk-in freezer for all the milk Michelle has been pumping. I have 14 pounds of breast milk in 1 freezer (yes I did weigh it) and god knows how many pounds in Shanon's freezer and we are still overflowing the NICU's freezer. I keep joking that I'm going to make cheese or ice cream out of it, but at some point I'm going to start looking for recipes. Hmm.. Perhaps this is some of that personal stuff I'm not supposed to be talking about here. Don't tell Michelle.

Here's hoping the rest of the week goes perfect!

Day 53

Taylor is now 35 weeks and 4 days old. She weighs 4 lbs 12 oz. 

To get out of here Taylor needs to do 2 things. The first is that she needs to take all of her feedings by breast or bottle, and the second is that she needs to have 5-8 days w/out any major apnea spells. 

Taylor has not yet taken to the breast as well as we had hoped. She has had 3 feedings so far from the breast that have been more than 1/2 of her feeding. For the most part she takes a little and then proceeds to fall asleep. We started trying the bottle last week. It has had mixed results as well although she has taken 2 full feedings now by the bottle. Everything else she has still been getting from the feeding tube.  We hope that this trend changes soon.

As far as apnea spells go, Taylor has continued to have recorded ones (even today), although the last major one (at least according to us) came Friday. Taylor had her second bath, and then followed it by drinking her first full bottle. She went to sleep with a full belly, and worn out by her bath. She proceeded to fall in to a deep sleep and oops forgot that breathing thing. This is not unusual. Most preemies begin to outgrow these around 35-36 weeks, which is what Taylor is. She'll be 36 on Wed. Hopefully she won't have any more. Otherwise, we'll be here longer. 

Michelle asked the doctor on Friday how long. He said a week to a week and a half. This gels with the 37 weeks he told me once. I was really hoping to be home before Thanksgiving and for us to have a big Thanksgiving dinner at our home, but I'm starting to think its not going to happen (or maybe we'll be home by Thanksgiving but not early enough to have the house ready). It would be nice, but I'll be happy just to have her home soon. 

Michelle has been at the hospital all week. Tristan and Haylee both got sick during the week and we weren't able to come up until Friday night. It was hard not seeing Taylor or Michelle for the whole week. Taylor has changed so much. Her cheeks are so chubby. And her hands are so big now. We stayed in the family room Friday night and then Michelle came home with us during the day yesterday. Shanon took the kids last night and Michelle and myself came back for the night.

It seems Taylor is developing a sense of humor, or I'm just unlucky. Last night I was holding her after Michelle fed her and I made the comment to Taylor and Michelle how nice it was to be holding and not having alarms going off anymore and how weird it was.  3 minutes later, she bradied. Argh! I was so close to having my first alarm-free holding with her. Anyway, she then pooped. We put her back up soon later and Michelle hinted strongly that it was my diaper to change. I joked back saying that I would call the nurse (there are some benefits to being in the NICU) but then went ahead and changed it. I was wiping her butt (stimulating her sometimes causes more pooping) and joked with her "just don't spray it all over me" and looked at Michelle and smiled. Just then there was gargantuan explosion and my poor innocent hand was dripping in poop. I seemed to have uncorked something. It kept coming and coming and coming. It was like one of those snakes on the 4th of July that you light a match too... I think Michelle almost had a bradie herself, she was laughing so hard she couldn't breathe.  Ha ha, really funny... But hey she pooped  A LOT and that was a good thing. Even I could smell it though (and I can't smell worth a dang). 

Anyway, that's about it for now. Hopefully she gets going on this feeding better soon and stops having any apnea. Then we can go home. 

New pictures

I uploaded some new pictures tonight. Sorry about the delay in getting them up. Also, something went wrong with the upload and some of the pictures are out of order now. Most of the new ones are after picture 90 or so.

I had written an update as well, but somehow managed to just lose it as well. Its late, so I'll write it up again tomorrow.

Progress

Taylor's cannula was removed Saturday morning. We had been talking with the doctor about it and Michelle made the comment that she didn't think Taylor really needed it anymore. The doctor said "okay, let's try it without it". She did fantastic! They removed the equipment from the room yesterday. We waved goodbye and smiled. In fact she's done much better off of it than she did the 2 previous days on it. Her bradies have reduced and her sat levels have been great!

She has also started feeding by the breast. She's taken over 1/3 and over 1/2 of a couple of her meals, and hopefully will continue to improve on it. Her feeding tube has been moved to her nose and that did seem to help her latch on better. Anyway, we are real happy with her progress.

She still is fighting constipation and unfortunately had some more blood in her stool last night. They will continue to monitor that and keep her off the extra iron. Her labs came back today and it appears that she is starting to increase her red blood cell count, so the extra iron may not be needed anymore anyway. She gained 3 oz Friday! That was a bit much. She didn't gain anything Saturday, but did again yesterday. 4pds 4oz!

Growing fast

Guess who is now 4 lbs 0 oz? None other than Miss Taylor Rose! Its hard to believe. She's growing so fast right now. Lets hope its just not because she can't poop. ;-) They backed off the iron and are still giving her suppositories. She's had a couple poops since, but they'll keep her off of iron for a couple days to let her catch up some.

Taylor has been doing good. Her oxygen de-sats have really slowed down. She is however still having some bradies (rapid heart rate slow downs) and there's been a couple times where its more like apnea and they've had to rub her up to get her breathing good again. But most of the time she recovers fine. Its definitely affected by her constipation as well. You'll see her struggling to poop and then she just kind of holds her breath too long.

She's growing fast. Michelle's pretty much going to take over from here on out (stay at the hospital until Taylor comes home) and try to get her feeding as soon as she can. Its a little difficult still with the feeding tube in her mouth, but hopefully they can get that moved to her nose soon. Her nose either has to grow some or she needs to get off the cannula. There's some progress there too. They bumped her pressure down today from level 2 to level 1.5. Assuming she does okay with that, they'll probably just remove it. I hope its this weekend.

She is doing well with maintaining her own heat. Her lid has been up since Monday and there's some confusion whether or not the bed was providing any heat. We don't think so, but they weren't sure so they couldn't finish that process until last night. Last night, Taylor's temperature monitor was removed. Its a big heart that seems to have to be moved around a lot which causes her discomfort. But its gone now. Yeah! One less wire! Her temperature is just checked during cares now (every 3 hours). The nurse was joking with me that the thermostat must be broken because every check since 9 last night (which she was 27 degrees Celsius) has been 26.7 Celsius which is perfect.

We need to get some more photos up and I'll try to take some tonight when Michelle and Tristan are here. Taylor is really filling out and looks good. Its amazing how far she has come. She is really active during cares (kicking at them when they mess with her feet) and was really active today as well when the doctor came in. She was making the doctor work by trying to push the stethoscope away. The doctor said she looked real good.

34 Weeks

Taylor is now at 34 weeks gestational age. Its kind of hard to believe we are here. This is as far as we were told we would be able to go if Taylor had stayed in Michelle. The big goal for us. It didn't happen, but here we are anyway. Pretty amazing.

Taylor is growing. She is now 3 lbs 12 oz! She still has the nasal cannula. It'll be gone by next week it sounds like. Her bed's lid has been raised and she's maintaining her own heat. She's in outfits now. Her constipation issues continue and they started giving her suppositories again on Sunday. She immediately responded on Sunday, and her poop was the talk of the NICU that day. Poor baby was a bit plugged up. She had her last vision test Tuesday morning and passed it with flying colors!!!

The next big thing to happen is for her to start breast feeding. That may happen as early as this week, but we've been told she should be doing that by next week and for Michelle to just assume she needs to be there daily from that point on. She will still be receiving some feeding by her feeding tube and that will be moved from her mouth to her nose sometime real soon. If the cannula goes, then it will be moved. Otherwise, they need for her nose to get a little bigger and then they'll slide it behind the cannula.

On a personal note, I'm really happy with what happened last night in America. There's a lot of people out there that wonder how people can bring kids in to the world with how messed up the world is. Its pretty simple really. I sit there and hold Taylor and all I see is peace and innocence. I see the curiosity and wonder in Haylee and Tristan and I know the world is going to be okay. I go to Haylee's school and I see the future and it doesn't scare me one bit. They'll keep the world turning. The world needs more kids.

My goal as a parent is really simple. If my kids grow up with curiosity and a constant desire to learn and to think for themselves, and a strong sense of empathy for others then I have done my job. That job is difficult at times with some of the things that have been going on in the world. There is so much prejudice and hate in this world. Its something I don't get at all. Its something I don't want my kids growing up with, but of course it can't be avoided. It is something however that we all need to change as much as possible.

Yesterday was a big day in America. Barack Obama was elected president. I don't know how he's going to be as president but I have never been so willing to give someone a chance like I have been with him. This decade has been a dark period in American history, and America's torch dimmed in my eyes. What America used to be has been replaced by hatred and fear and flat out incompetence. When Bush was elected president again 4 years ago, I was just plain shocked and I lost a lot of faith in people. Obama has restored some of that faith and hope for me though and I'm excited that he has been given a chance. I'm also scared to death that hatred may prevail in the end and extinguish his torch before he has that opportunity to prove himself.

But right now I'm happy for my kids. If Obama's who I think he is and he makes it through his two terms, then Taylor will be 8 years old and Haylee 16 before he's out of office. Taylor will still be too young to really understand, but Haylee will (I already bore her to death with political talk). They all will hopefully be brought up in a better America. An America that believes in hope and once again takes on the world not with guns and selfishness and hate, but with knowledge and cooperation and hard work. A country that shows my kids that people are inherently good and that there's a chance for peace in the world if we only allow ourselves to believe. A place where my kids will know they have an opportunity to be anything they want to be and hopefully a place again where they can attend the best schools in the world w/out bankrupting Michelle and myself. A place where we can all dream the American dream again. I may be proven wrong in the end, but at least for now America's torch is burning bright again. It was a wonderful night and I dare hope for a better tomorrow.