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...

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. 

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.

33 Weeks!

Taylor is now 3 lbs 7oz! She's still on the high flow nasal cannula and it sounds like she will be on it for some more days still. While she's still needing the pressure, she's only on level 2 and she has been on room air for the most part for the past couple days.  Its progress at least.

People are starting to talk about how we might be out in a just a little while.  Some nurses have mentioned 10 days. I'm thinking a couple weeks still but I'll take sooner. Taylor has not started breast-feeding yet, and there's obviously the lung issue. In addition, something may be going on with her guts. It's like she's constipated a lot, and tonight Michelle saw a little blood in her poop. Michelle is thinking it might be the iron.

The nasal cannula has been a blessing in the sense of how different Taylor is with it than CPAP. She's so expressive and moves a lot and is alert a lot. However, the water issues are bad with it as well. Water just builds up in the line and its difficult for the nurses to see. Michelle sees it though and gets it out and is helping the nurses see it better as well. 

I've got the cold this week and haven't seen Taylor since Sunday. I look forward to seeing her soon.

A Ship Named Miracle

This is just a little story for Taylor in honor of her being 1 month old and in honor of her having so much strength and getting through everything life has thrown at her.

A Ship Named Miracle

The news arrived to us

one warm summer day

replacing our happiness

with sadness and dismay

Your trip to us was not

even half way through

but they were saying 

your chances were few

Luck brought you a hero 

who would give it shot 

who believed in you

when others would not

He saved you that day

spinning hope out of dread

but he let us know that

rough waters lay ahead

On a ship named Miracle 

you set out on the sea

armed with love and hope

but with no guarantee

You sailed hard with a 

strength that never wavered

For several weeks the 

winds blew in your favor

And then slowly the sky

turned dark and mean

and angry winds blew 

in upon the scene 

Waters gnawed the boat 

and threw you around

and several times you

almost went down

But it could not dissuade 

your determination

and you began to earn

everyone's admiration

With a scream that was

no match for a banshee

on a ship named Miracle 

you fought back the sea

Not surrending its grasp

the sea hit back hard

and rattled your ship

and left it marred

Water pounded the decks

lightning crashed evil intents

waves rolled you through

heart-pounding descents

But as winds tore your sails

on deck you remained 

fighting with hope against

a full blown hurricane

We wanted you to come in

your received our warning

you slowly headed to port

early one fall morning

It wasn't when we wanted

but you survived the war

from a ship named Miracle

you came upon our shore

After the storm settled

they led us to your side

and later that night

I sat right down and cried

For so long I had been 

gripped in this callous fear 

that somehow you would

never make it here

But fear had no place 

when I held your hand

warmth replaced darkness

and I felt my heart expand

And though I know that 

your story is just beginning

your incredible journey

had a very special ending 

And so I tell your story

I make sure everyone knows

about a ship named Miracle

and its captain Taylor Rose

Day 30

Taylor is now 1450 grams or 3 lbs 3 ozs!

So as I said in the update, Taylor went back on oxygen last night. For the most part she did fairly well during the day. She had some oxygen saturation problems when she was trying to poop and when she was stirring, but it wasn't that much different than other days on CPAP. There was a bit more short bradies than normal. It seemed though to get worse as the night wore on, and the nurses thought about it for a while and decided to just see if they could give some oxygen through a nasal cannula. The hope was that she wouldn't need it all the time, but she pretty much did and was on 24% for most of the night.

The doctor does not want her just on oxygen as oxygen obviously has lots of problems associated with it (ROP, lung disease, brain problem, etc...). She also heard crackling again in Taylor's lungs. She wanted to go back on CPAP. We of course weren't crazy about that. We don't want to risk doing anything that might make Taylor worse, but the CPAP has had its issues. For one Taylor's CPAP tummy is just starting to getting smaller and we'd like it to get back to normal so that her lungs have room to grow. Secondly the water problems we've had. Thirdly how fragile it is and how it seems at time that Taylor has been struggling against it rather than it helping her. And finally, she's been on/off oxygen with it as well. 

Anyway, the doctor recommended CPAP but said she would try a high flow nasal cannula if we really didn't want to go back on CPAP. The high flow nasal cannula basically simulates CPAP. It is a pressure based system as well and it would help the sacks in Taylor's lungs stay inflated like CPAP. Its not as effective as CPAP however.  It is however a heck of a lot less intrusive and doesn't cause the stomach problems. She left the decision to us and put Taylor on 1 liter of fluid to get some pressure going. The high flow is 2-3 liters. I called Michelle and we discussed it. As we were discussing it, Taylor's saturation levels were incredibly good. So good that I was convinced she was on oxygen and was trying to get nurses to turn it off (since Taylor was at 100% sat level which is only good if you are on room air). Multiple nurses confirmed that she was not on oxygen. 

Anyway, when the doctor came back in, I was kind of like "why not leave her on this?" since she was doing so well. She explained that if she was going to do the high-flow she didn't want to do anything non-standard nor dink around and wanted to do high-flow the way it was supposed to be done. Made sense, so they called the respiration therapist to get her set up, which she did. But Taylor's sat levels were back to being cruddy again and they moved her up to 25% oxygen. I was and still am so confused on how the higher level of pressure made things worse. The doctor and nurses have all been saying it was just coincidental and that other things must have been the cause. It is true that Taylor got cold (for reasons unknown again to me because she's in her bed that's automatically adjusting to her temperature), and that they also changed her diaper and other things around the same time. But still it didn't make much sense and the nurse was confused too. 

Anyway, we had a lot more discussion about whether it was the right thing to be doing and we decided to give it a shot still. For reasons that also baffle me the more the day progressed the doctor seemed to be even more supportive of it and almost was reassuring us that it was the right thing to do. But she still would do the CPAP if Taylor needed it and I thought the doctor thought that if Taylor was still on oxygen that would mean she needed the CPAP. But during her re-assurance speech Taylor was still on 25% oxygen which is more than we started with earlier in the morning. I'm still scratching my head.

But hey, no CPAP still. She's been on oxygen most of the day, but hopefully we can slowly ween her. She's at a lower level now and is doing fine. In about 1/2 hour she'll be at a lower level. If that goes good the next level down is room air. They can also go up on the pressure level more if they need to, although Taylor is already at the max pressure level this doctor would want before saying just go back to CPAP. There's a new doctor in tomorrow and we are anxious to hear what she says.

Tonight, for the first time ever I got to hold Taylor without the CPAP. The high flow nasal cannula is so much easier to deal with, and I can see Taylor and Taylor is pretty much free to do what she wants. Her facial expressions are incredible and when I got her she was alert for about 20 minutes before falling asleep. She sucked hard on her pacifier for about 15 minutes as well, while she sat there staring at me and looking all around. It was an incredible feeling. It was also the first time I could kiss her head and she got several. Michelle was lucky enough to have Taylor off of CPAP when they did some trials a couple weeks ago, and she was able to give her a kiss then. I swear, its the little things that are so dear to you with a premature baby. Things you just take for granted with a normal child are just a completely different experience because you have been held back from being able to do them.

Michelle is feeling better and was able to be here today although she left for the night. She'll be up tomorrow night and hold Taylor for the first time in a week. We may try to get a room here so that we can all be together. I don't know. There's a big part of me that just wants my bed and wants to sleep in. I've been at the hospital every night this week except Tuesday and its really got me wore out. Last night, there were so many alarms going off next door, and Taylor had her share, and she ripped out the nasal cannula several times. Anyway, I need some sleep. Speaking of which I should shut up and get some...

A quick update

Taylor was placed back on oxygen around 11pm last night. Its just oxygen right now and so far they have not put her back on the CPAP. The doctor has not been yet today, so I don't know what she's going to say. Unfortunately, we were hoping that Taylor would only need about 23% oxygen occasionally (like when she's pooping). Since they placed her on it last night, she's been steadily at 24%. My hope is that she can stay on the oxygen through the hump and not have to go back on the CPAP. 

I'm obviously biased but..

I'm obviously biased, but dang she's cute. I uploaded some more photos from today. Things are still going good. She has had a couple more bradies today than usual, but she's still off the CPAP. She's back on her tummy again after being on her side for a while, so I expect things to get better. I won't be holding her today. We just want her to take it easy. Its very hard not too though. She's finally off her CPAP and I just want to grab her and give her a big hug. 

Michelle's upset she can't be here. She was supposed to be at the hospital the last couple days, but has a cold that just seems to be geting worse. I feel for her today. Its like there's a new baby in our room. I've been watching her a lot today. Her facial expressions during pooping and passing gas have been entertaining me a lot. I have some of it on video but don't have a way yet to get the video to the blog. 

I'm just crossing my fingers that she makes it through the night off the CPAP. She's still a few hours away from reaching that 12 hr milestone. I hope Michelle's cold gets better and she can be here tomorrow to enjoy her very cute baby that everyone keeps comments looks a lot like her. 

Oh, I forgot to mention that she had her first vision test on Tuesday and passed it flying colors. It wasn't very pleasant to watch. They have some eye clamps they use to hold the eye open and the doctor moved her eye around with what looked like a q-tip. The clamps bruised her eyelids some and the eyelids are a little swollen as a result. She has another in 2 weeks that we may see if we can postponed. The doctor said her eyes were doing real well, so maybe they can wait 4 weeks instead of 2, especially if she is no longer on CPAP or oxygen.

Also, if she stays off the CPAP, they will be moving the feeding tube up to go through her nose instead of her mouth. 

No CPAP!

32 Weeks! One month old! No CPAP!!!!!!!!!

Taylor has been off of CPAP now for several hours. She's been doing great! The next 12-24 hours are a wait and see. So far so good! I've added some more pictures to the slideshow. Some aren't that good, but I added them anyway.

Keep your fingers crossed....

3 lbs!

Taylor reached a big milestone tonight, 3 lbs! 

She's doing really well. Unfortunately, she's still needing her CPAP. We were hoping this would be the week that she would get off of it, but it sounds like it will not happen yet. The doctor says her lungs are sounding a lot better, but it appears that she still needs it because when its not working well her oxygen levels go down. 

Beyond that, she is now taking her feeding in 1 1/2 hours and then waiting another 1 1/2 hours before getting it again. Assuming she continues to tolerate this, they'll keep changing the ratio. Her stomach is still large but is visually looking better. She also took the pacifier tonight for about 15 minutes. The nurses comment on how alert she is at times, and any nurse or RT who hasn't seen for awhile always say how much bigger she looks. 

She had some CPAP issues over the weekend and through the night last night. The morning nurse really knows what she's doing when it comes to the CPAP and came in and got that all squared away this morning and she's been doing great ever since. I hated disrupting anything so skipped holding this morning but did a extended 4 hour session this evening. Michelle's much better at holding than I am and has been doing other things like reading during holding time for quite awhile now. I decided to give it a try and tonight Taylor and I read Jack London's The Call of the Wild. Well, I guess its more accurate to say I read some of it to her and then the rest to myself. Taylor fell asleep hard on page 2. Of course, they came into put Taylor up when I was 2 pages from being done. Timing... 

This last weekend was a break I had been needing. The kids and myself met Michelle at the hospital Friday night and we went out to dinner. It was that place where they gave you peanuts and you could throw them on the floor. Haylee and Tristan thought it was the coolest place ever. They finally could be slobs at the dinner table and not get in trouble. We stayed the night in a family room here at the hospital and then went home on Saturday. My mom stayed up at the hospital Saturday afternoon and then Mary relieved her Saturday night and stayed through Sunday evening. Cindy came up on Sunday and spent the day with Taylor and Mary. I can't say enough about how much I appreciated it. 

On Saturday, we left from the hospital and went to Michelle's Great-Grandmother Pearl's funeral. It was sad but very nice. I can only hope to live as long and have the impact on other people's lives that she did. A very nice lady that will be very much missed. 

After the funeral we headed home for the day to get some work done. I can't honestly say we got anything done, but that's okay. I watched the majority of the Beaver game, and then we started pulling out old baby stuff that we had kept and Haylee happily sorted through all of Aislinn's old clothes that Cindy had given to us. It is strange but very cool to be starting to think about having a baby around our home. I can't wait. 

Later, we made popcorn and sat down to watch Nim's Island. We actually rented it for $1 way back when Michelle was still pregnant and in the hospital. It ended up costing us almost $35 dollars because we never got it back. I'm not sure it was worth $35, but I have to say I enjoyed it a lot. It was a good movie, but I think it was probably just sitting next to the kids, watching a movie, eating popcorn , and not thinking about anything that was the part I really enjoyed. 

Sunday was another unproductive day at home, and that was okay with me. We did get the Bronco and the goats ready for their big move. We decided its best for them to live someplace else, where they can again be eating all sorts of brush and get the kind of attention they need. And though I'm going to miss her quite a bit, I trust Joshua and Abby with my goofy little inbred goat and I will see her again when I visit. I won't miss her eating my raspberries though.

The weekend was over before I knew it, and I spent the night back at the hospital with Taylor. Strange as it to say, I think time is beginning to seem to get back to normal. The days are going by a lot faster now. Our little girl is almost a month old. That is hard to believe. 

Michelle's Special Night

I probably won't do this justice because I'm relaying on the story Michelle told me about her night tonight. Michelle had a wonderful night with Taylor. 

Michelle held Taylor for about 4 hours tonight. During the time when she was holding Taylor the nurse came in and said that a harpist was there and the nurse asked Michelle if she would like to hear some songs. Michelle said yes. Michelle said the lady played 4 very long beautiful songs. The harpist apparently was used to playing for preemies and was very conscience of how Taylor was doing. And Taylor did fine except for one moment where she pooped. A critic already I guess. Anyway, Michelle said that it was wonderful (not the poop but the music). 

After kangaroo care they usually do a hat check which means they take all the CPAP off and replace it, take temp, clean diapers, etc... This is with the bed fully open as well.  Anyway, Taylor is usually wide awake during this and its a very special time to be there. After they are done they position her and wrap her up nicely and then shut the lid. She then usually gets very comfortable and falls fast asleep. Tonight was different though. Michelle said that Taylor was wide awake and was looking all around. The nurse decided that it was best to just leave the lid to the bed open and leave mom and her baby alone for a while. Michelle said Taylor was awake for about 1/2 hour. She was just looking around, taking everything in, and was very alert. She also was sucking on a pacifier for the first time and even seemed to want it back after she spat it out. It was a very special moment for mom.

It sounds like Taylor has had another good day. She's been on oxygen a couple times, but only for short amount of times. When I was talking to Michelle her oxygen saturation alarm went off. We were trying to figure out why and the nurse came in and over heard our conversation I guess, and told Michelle that it was feeding time again. Taylor had been off her food for 1/2 hour, and the nurse thought that the sat alarm might have been a result of her getting uncomfortable because of food. She said it happens. I thought it was still a while before the develop hunger pains. Maybe not. 

Anyway, I thought I'd pass along Michelle's special night with Taylor.

31 Weeks!

Taylor is now 31 weeks old gestationally. Tomorrow she will be 3 weeks old. She is still doing very well and is now 2 lbs 12 oz. Today the doctors bumped her CPAP pressure level down from 5 to 4. They are doing this for two reasons. The first reason is that Taylor's stomach is still pretty big. As stated earlier its a problem for children on CPAP. The air gets into the stomach, the stomach grows, and soon the stomach starts competing for room with the lungs. And of course the lungs don't need any extra competition right now. The second reason is that they hope they can start weening her from CPAP. If she does well on room air with CPAP they will start thinking about removing the CPAP for periods of time. If she does not do well, they'll put the CPAP back on. If she does well, then its later tater to CPAP. The doctor also said that most children by 32 weeks can be off of it. One week away!

They are also taking her off of continuous feeding. She will now be fed for 2 1/2 hours straight and then nothing for a 1/2 hour. This too can help with her extended stomach by giving her stomach a break for 1/2 hour and letting the nurses get all the air out. It also is the beginning of a new cycle for her towards regular feedings. If she does well on the 2 1/2 hours on, 1/2 hour off, they'll change it to where she's 2 1/4 on 3/4 off, then 2 on 1 off, etc... until such time they get down to her getting her feeding in about 15 minutes to 1/2 hour and then nothing else for the remaining 3 hours. Of course by then, we hope she's stuck to mom and she can have all she wants.

Its really incredible to think about how well she has done and is continuing to do. She truly is a miracle child to us, and she continues to amaze us. To think that 35 weeks is only 4 weeks away now is just incredible. Perhaps it will be longer than that before she can come home, perhaps shorter, but the end isn't too far away even though it seems like it at times.

I have to say that I feel kind of stupid looking back on some of this right now, and some of my recent behaviour. Those that know me well, know that I am not a very patient person. I am very honest in saying that I want Taylor home today and that it seems like I'm almost always missing my family. If I'm at the hospital I miss Haylee and Tristan. If I'm at home I miss Taylor. Every moment I'm not around Michelle, I miss her horribly. I just want everyone home happy and healthy, and I want to be able to work again at the office and come home to my family at night, and just get back to as much of a normal everyday life as there will ever be. Anyway, its to be expected I guess that I'm so impatient, but its not what's important. We have been given this miracle and we are so fortunate and so blessed in every way.

Mary sent me the e-mail about lighting a candle for the children you lost and told me she was lighting a candle for her Gracie and one for our little boy. It brought back some emotions that have fallen under the surface of everything else that's been going on. I went and found a copy of the George Canyon song "My Name" and sent it to her. Tonya had sent that song to us after our miscarriage. Anyway after listening to the song again, the whole thing kind of slapped me in the face.

I've mentioned the miscarriage before here but not in much detail. In October 2005 we had a late miscarriage and lost a baby boy. The miscarriage was at 17 weeks. We had an ultrasound at 12 and while everything was okay, it didn't feel right. I can't describe it, but it just seemed "off" a bit. Michelle also hadn't felt a lot of movement like she thought she should have. They guessed he was around 14 weeks gestationally when he died. Anyway, Michelle and myself are fairly grounded people but it obviously had a huge impact on our lives. We'll never know what happened although we have often wondered. We brought him home and buried him. It was probably one of the hardest things I have ever done in my life. Even at such a young age, he was a beautiful child and I will never forget what he looked like. It was amazing seeing a baby at that age and seeing the detail, and I could see similarities between him and Tristan. Anyway, it was a very sad time. We never named him.

His death had a major impact on our lives. Of course our immediate reaction was "never again". Tristan's emergency c-section still haunts us to this day, and the miscarriage was just too hard. While there are lots of things in my life that haven't worked out, for the most part I've been pretty blessed and it was pretty hard to deal with something like that happening because I had previously been so fortunate.

But over time... (and rest assured there will not be any "over time" after Taylor - we are done with pregnancies!!!!), we started thinking about having another again. It took us a long time to get pregnant again. There were personal reasons for this that I don't want to go into. Anyhow, it took us so long that I think we were both wondering if it ever would happen again. And then it did.

I've mentioned before about how scared Michelle has been this whole pregnancy. She was afraid of losing another. She's tried to keep herself fairly emotionally detached and built a bit of a wall for self-defense. It was not until 18 weeks along that she finally took a breath. I felt so bad for her when things took a turn for a worse at 20 weeks. They think the reason for her incompetent cervix was due to an injury she received from the D&C performed after the miscarriage. Had we known the risks we would have still had the surgery.

You can look at things another way though as well. This whole trip started with a little blood and Michelle got into the doctor right away because of the fear that she had in losing Taylor. Because some minor bleeding is so common in pregnancy, the doctors office wasn't that concerned and only agreed to see her to help her put her mind at ease. Because she acted, she saved Taylor. Had she not, her water would most likely have broken within the next day or so and we would have most likely lost Taylor. Instead she ended up upside down on a bed and the hospital story began.

It was two days later when Dr. Coleman simply performed a miracle. I often go back in my mind to that day when he was somehow able to get the membranes back in and the cerclage in place. A 1% chance of it working is what they said. I was sure we would lose Taylor. I was sitting there waiting for the surgery to be completed, just lost. The thought of Michelle having to deliver and us watching our child die because Taylor wouldn't be able to breathe was just so hard to take. I didn't want Michelle to have to go through that. I still remember being stunned when Dr. Coleman walked in and said it was a success. Other people can say what they want about whether the whole procedure was necessary but I personally know that he saved Taylor's life that day as well. He said he got lucky. I'm sure it was skill, but I also believe I was a witness that day to a miracle. Perhaps, as Tonya has suggested, Taylor's big brother is now her guardian angel and is looking after her. Its a nice thought.

Our little miracle is doing so well. Time will soon past and she will be home. I'm blessed with two other incredible kids. I am fortunate to work with some great people who have given me the flexibility needed to get through this. I have a wonderful extended family on both sides. I'm married to the most wonderful, intelligent, incredibly beautiful and amazingly strong woman that I have ever known. I truly am the luckiest guy in the world, and should have nothing to complain about. Still if somebody can pass me the fast forward button, I would really like to get to Thanksgiving quickly.

October 15th

Mary sent me the above image and link. To be honest, I did not know about this and think its neat. Michelle and myself lost a baby boy at about 17 weeks. It had a huge impact on us, and also affected Taylor's pregnancy. Hearing about this idea, brought back a lot of emotions to me, and also hit me a lot harder than I would have expected.. I don't have the time to discuss it right now, but I will try to put some thoughts down about it tonight.

2 lbs 11 oz

She gained 30 grams and is now 1230 grams or 2 lbs 11.3 oz. She is also 39 cm long or 15.35 inches. 

Kangaroo care last night went good. I got to hold her for almost 3 hours. The CPAP worked its way lose about 1/2 hour in, so I had to put pressure on the nose pieces for the rest. It worked out okay though. She just kind of settled down on her side on my tummy and we enjoyed the time together. She had to have a little oxygen and had one brady where I had to wake her up from a deep sleep, but beyond that it went great.

Last night went a lot better than the night before. She was on just a little bit of oxygen through part of the night, but also spent her time on room air as well.

The doctor was in already this morning and basically isn't changing anything except upping her feedings some more (they adjust them based on weight gain). Later this week, they may start staggering her feeds but not today.

That's about it. My mom is coming up for the day and I'm heading off to work. I'll be heading home tonight. I look forward to being with the kids, and seeing Michelle if only for a little bit at the hospital. 

New picture

Taken today at hat check. Would have been a better picture, if I would zoomed in more. Oh well... I added it and 2 others to the slideshow.

Day 19

As slow as time seems to go lately, its amazing that this is day 19. Taylor is rapidly approaching 31 weeks (2 days away). 

Taylor is now 1200 grams which is a little more than 2lbs 10oz. She's slowly gaining weight, and the doctor says she right on track. This whole metric thing really confuses a simple mind like me but she gains about 20 grams a day which is about .7 oz. Anyway she should be 2lbs 11oz tomorrow. Of course that's confusing to me too because she gets weighed for tomorrow around midnight tonight. So I go to bed tonight knowing tomorrow's weight. I wish I knew what else would happen tomorrow as well. Confused yet... welcome to my world.

The CPAP battle continues. Yesterday, our doctor told Michelle that they would start weening Taylor from the CPAP this week. Yeah!!!! He then came back later and heard some more crackling in Taylor's lungs and said that it looks like she still needs her CPAP. He heard a little more today and confirmed that they will NOT be weening her anytime soon. Boo... She has been on/off oxygen more today. Its position, its the CPAP, and its her lungs growing. Hopefully next week. It would be really nice to hit 32 weeks with no CPAP. No medical reason that I know of, just parental relief.

Taylor's stomach is still pretty big. The doctor is not real concerned about it, but would like to see it smaller. Babies on CPAP get a lot of air in the stomach. The nurses continue to pull air out very often (sometimes every 2 hours) to help. The doc did say that its a bit of a problem with the CPAP as well. A big stomach puts pressure on the lungs as far as room goes, and sometimes they have to bump the CPAP up so the lungs can compete with the stomach. Sounds like a spiral we hope to avoid. On the plus side, Taylor seems to be impressing everybody with her pooping ability. She doesn't poop all the time but once she gets going.. look out. "4 diapers in a row!", Saturdays' nurse proclaimed. Last night when I was holding her she kept going and going. I was getting kind of nervous and started feeling phantom drops on my side. Turns out I had a reason to be worried. Our nurse said that the diaper was saturated. When we put her up she went through another one. He said she was graduating to a bigger diaper because he didn't think the diapers she was on could contain her anymore. I'm so proud of my little girl, although she does look a little weird with this big diaper on now (its way too big for her little body). Of course, I am no longer necessarily jumping at the opportunity to change her diaper.

Since we are on such a lovely topic, I have to say that I wish she would keep things only coming out one way. Unfortunately, she keeps burping up as well. Not a big deal for a normal baby, but for a baby on CPAP its horrible. Last night when I was holding her, she all of sudden just started kicking and punching and flailing about. I couldn't figure what I said or did (I was just sitting there I swear). It was horrible! I could see she was really struggling with getting a breath and then all of sudden stuff just started coming out her mouth and CPAP. I ripped the CPAP off and just let the alarms go off. It was horrible. 

She did it again in the middle of the night and they had to replace everything. Because of that, and just the general oxygen up/down incidents throughout the night, and some problems with monitor leads, it was a long night. For the most part anymore,  I try to sleep. When an alarm goes off, I almost always wake up, but I quickly try to figure out what the alarm is and usually don't get up anymore. If I get up, I'm not getting back to sleep anytime soon. It depends on the nurse as well. Last night we had one of our favorites so I wasn't as concerned. I was mad though at myself when I heard she spit up again. I heard the sat alarms go off, but it had been going off a lot, so just kind of ignored it. Then the brady alarm went off and people were in here pretty quickly. I just kind of lied there listening and then I learned that she had spit up and I got mad at myself. On top of those alarms, one of the nurses that had come in to help hit the emergency button instead of the pause button. And that brought a lot of people in quickly. She was quite embarrassed. Anyway, I wish I would have responded faster now as it might have saved Taylor some grief. I guess I'll probably be back in that jumping out of bed mode again for a while now.

Sleep is not something that is easy to do anymore. Its seems kind of screwed up to me. Most people have a child and bring them home and then can't get any sleep. We are going to be bringing Taylor home and sleep better than we have in a very long time. Nights at the hospital are not conducive to sleep. Michelle can't get relief anywhere because she can't go more than 4-5 hours between pumping. I can't seem to get relief at home because of my stupid cat. Grey Kitty (I didn't name her - she came as part of the package when I married) seems to be missing me a lot. She has to (and I mean has to) sleep on me. Its driving me nuts. I am not the type that likes animals laying on me. I wake up and "politely" re-locate her to the headboard, to the end of the bed, to the floor, to the hallway if my throw is good..  She waits for me to fall back asleep and then plops right back on me. One time (and I'm not joking) I was laying on my side and the cat was like sleep hanging on me. Argh! Anyway, its time for her to start sleeping with the kids (who pretty much get all the animals we don't want).  Michelle and myself have also been calling each other at night after kangaroo care to tell each other how it went and to say good night. Unfortunately, I think we are going to have stop doing that because its part of the problem as well. Most nights its almost midnight before you can make a call and some nights like Saturday night are worst (1:30 in the morning). Anyway, its probably more important for us to both get more sleep. 

Michelle is doing good. I have heard that I should never mention her weight (or pretty much any female's weight) publicly again so I won't. She's been eating good and has been getting outside some so should be regaining some muscle strength soon. She was able to do the feet on one of the horses this weekend which was much needed for both the horse and her I think, although Michelle was still sore yesterday from it. I suspect that she will back on top of her horse before the end of the week. I can't really speak for her, but overall I think (besides having to put up with me) she's doing good. She is getting excited about Taylor now. That may sound a little strange to some people, but just realize that there were only about 2 weeks in this pregnancy that Michelle felt good about it. Up until about 18 weeks, she was just so worried something would happen again like our last one. She started feeling good and then BAM! this whole thing started. So its nice to see her excited and finally getting around to get some baby things that we need.

Mary stayed up at the hospital Friday and Saturday through the days, and my mom yesterday. I worked from home Friday and came back that night, Michelle came back Saturday night, and I started over again last night. It was nice to get a few things done on Saturday and Sunday. We got one of our fences up and I got the arena finished enough so that the gutter guy can come back and finish the last gutter. We have more to do before its starts pouring non-stop but at least we've made some progress. 

You would think I would have been in a great mood this weekend. I was home Saturday day through Sunday night, the Beavers creamed the Cougs, Taylor had a great weekend, and at least in the days I was with Michelle and the kids. Unfortunately, and especially for Michelle, that wasn't the case. I don't know why, I'm just in a down mood lately. I should be getting excited because we are probably 5 weeks away from it being over. But I'm not. Another 5 weeks. It just seems like forever still.  I know I haven't been getting enough sleep. Also the back and forth on days like Friday (come home in the morning, try to work, go back at night) is just too much on me even if I'm around Michelle and the kids.  I have really been missing and needing Michelle lately. It was so rough watching what she went through at the hospital, and I'm so happy to see her out. I just want to spend my days and nights with her and get back to life together with her and the kids. Unfortunately its a still a ways out and its driving me nuts. It was to the point this weekend where I didn't want to go back to the hospital or have her go back even though Taylor needed us. Its so selfish of me and so childish. Its also stupid because once I got to the hospital and Taylor looked at me I was suddenly in a much better mood. But that's my life. I wish it were different, but I'm only human. 

I just wish I had a time-out bottle. One 24 hour time-out, with me and Michelle and the kids laying around on some warm beach soaking up the sun. Man that would be nice. 

Racing In The Wind

Sometimes when something has been troubling me, or if there's been a major event in our life, or if I'm just trying to tell Michelle how much she means to me, I write poems or songs. They are not very good, and usually only Michelle has to put up with them. Since I've seemed to have bared my soul here anyway, and I'm putting this together for Taylor, I guess you all will have to deal with them as well, or at least skip to the next entry.

I have been trying really hard to find my poem for Taylor's birth, but I haven't found it yet. So this isn't it, but another one. Monday night I got to hold Taylor in my arms, and I think I mentioned how good of a mood I was in before that. So I was real surprised that while I was holding her, that the tears just started coming out. This little girl has a way of doing that to me. Anyway, this poem is my attempt to write down what was going through my head at the time.

Racing In The Wind

So small and fragile

I feel your warmth

against my chest

locked within my arms

You were born so early

how it hurt us so

momma tried so hard

but had to let you go

For reasons unknown

dreams got replaced

leaving us trying

to cope in this place

I want to see you

but your face is behind

the water and tubes

that keep you alive

Sleeping peacefully

through alarms and dings

coming from all of

these damn machines

I rock you slowly

and try to ignore

all these wires

moving to and fro

Time is a healer

darkness will succumb

we will leave this place

your time will come

I close my eyes

fast forward the years

towards the the joy

and away from tears

I see you running

through the trees

racing in the wind

unbound and free

You playing among toys

spread through the yard

I see you smiling

hugging your momma hard

Your brother and sister

riding horses with you

everyone just trying

to keep up with you

I see you screaming

for no reason at all

I'm screaming right back

answering your call

I see you looking

I ask what you see

I see myself holding

you so close to me

Not all dreams do but

some dreams come true

and I'll keep dreaming

these dreams for you

Rest now and grow

my beautiful child

I'll replace my tears

by dreaming a smile

Everthing is alright

someday you will be

racing in the wind

unbound and free

30 Weeks!

Today Taylor reached her gestational age of 30 weeks. Its kind of bitter-sweet. Its fantastic in so many ways. Obviously she's maturing and its somehow easier to think of the road ahead when you are in the 30's instead of the 20's, but still there's that part of me that doesn't seem to have let go from the past. We so wanted to reach this point, but it wasn't too be. It's funny at times how it hits you. I'm sure Michelle feels it a lot more than myself, but its still hard even for me. Sometimes, not thinking I'll reach for her stomach to feel Taylor inside, and its sad when they come away empty. Not that I mind feeling Michelle instead. For so long it was also impossible to just hold her in my arms, and that feels good, but there's something missing.

Of course that something missing is now almost 2 weeks old. I find that hard to believe. Time seems to go so slowly these days, but at the same time it seems like yesterday when we were sitting in the c-section room wondering how she was doing. She's come so far and is doing so good. Everyone is telling us that she is doing excellent and that we should relax some, but its hard to do that yet. I suppose I won't be able to until we are home and away from this place where there so many memories.

Taylor hasn't gained much weight. She's still hanging out at 2 lbs 8 oz. We're not too concerned yet. She's pooping like crazy and tolerating her feeds for the most part. She'll grow soon enough. They have had her on extra fortifier because of the concern with her lungs, but will be stopping that now because her poop is getting to runny (and I know that too well from that diaper change the other day).

She has been doing better with her oxygen and CPAP. They lowered her CPAP pressure today back to 5 and she was on room air for the most part and doing fine. Our day nurse the last couple days is the one who actually encouraged this hospital to switch over to this new setup. The CPAP has worked quite well with her. Of course, the nurses and doctor tell us that its not just the CPAP but something that all premies go through. There's truth to that, but I know the CPAP is a part of it. I've sat there and witnessed too many times now how Taylor struggles when the CPAP is having problems, and how well she does when it works like its supposed to.

There's going to be a new doctor the next couple days, and it will be nice (I hope) getting yet another opinion. Taylor's had another head ultrasound last night and more bloodwork. I just realized that I forgot to find out the results from Michelle. I only assume they were fine or Michelle would have said something.

I came home yesterday and Michelle stayed with her. Michelle said that Taylor seemed to enjoy her singing Puff the Magic Dragon. Her sat levels I guess were up pretty high. Michelle has sung that song to Haylee and Tristan as well when they were babies. I didn't dig too deep, but it sounded like she had a great evening with Taylor. She did say how good it felt to have Taylor in her arms again.

The kids and I will be going back up tomorrow night and hopefully staying the night in a room again. Mary is coming in on Friday and we'll come home then together at least for the day. I'll be working but at least we'll be together. I'm not sure yet if I'm going back Friday night, or what the plan for the weekend is yet. One day at a time.

For the most part, Michelle and myself are doing better. Michelle's milk supply is improving and she's feeling better. She's got a lot of milkshakes and conditioning ahead of her. She says she was walking up and down the stairs at the hospital today trying to get her legs back in shape. She hoped nobody noticed the crazy lady going up and down the stairs for no reason. We have to get some more calories into her. Not only is she pumping and needing calories for that, but she's got to gain some weight. Before she was pregnant she was 115. She weighed herself the other day and was 104 and I'm afraid she going to hurt me someday with her spine. Not to mention that Lizzie (my dog) will outweigh her now by 20 pounds and might knock her over. Of course, I haven't seen Lizzie for a long time. Her and Jasper are still with my folks. I hope to bring them home soon as well, but right now its enough of a mess with the two small dogs around here.

I can't speak for Michelle, by my mind finally seems be digesting some of the stuff from the last couple weeks. Well, at least I've been able to think some about work and other stuff the last two days. It was nice getting into work for a couple hours yesterday, and it felt real good to be home today. I can't remember dreaming last night, and that was nice. The last time I was home I kept dreaming about Taylor and waking up in the middle of the night thinking I was in the hospital. Michelle's Grandma keeps bringing lots of good food down and my stomach is so full. I guess hospital life isn't for anyone as I've lost my share of weight during all of this as well. If Grandma keeps bringing all this good food though, that won't last very long.

Anyway, another milestone and on we go...

Day 12

The power supply on my laptop died yesterday. Thankfully Shanon let me borrow her brand new laptop (she's a fool). It took me a lot of the early morning to get it working (the first time I used Windows Vista) but its doing the job now and I've been able to work this afternoon. Hopefully our power supply will show up this week.

Taylor's road has been a bit bumpier the last couple days. We keep being re-assured that its to be expected, but I just wish it was smoother. Her oxygen sat levels have been all over the place at times and they have been giving her oxygen at times. Its been odd. There are times when she is perfect and is on room air and has no problems whatsoever. Other times, they have her on a lot of oxygen and she's having difficulties. It sure seem like the CPAP is a big part of the problem. When it seems to be working fine, she's fine. When its not, she's not. Its such an imperfect piece of equipment, and it seems like somebody really smart could make a lot of money by perfecting it.

There are other factors as well, we know. Sometimes its something going with Taylor (perhaps an upset stomach, or hiccups, etc...). The doctor is still concerned about her ductus arterious. She said 2 nurses have reported hearing possible heart murmurs, but she doesn't think so. Taylor is sounding great too her. She's just concerned because of the increased need for oxygen.

Taylor's PIC line was removed today! This is a big step for Taylor and a relief for us. As previously mentioned, we didn't like the PIC line being in there and were concerned while it was (if infections happen with it they can be bad). Taylor doesn't need it anymore. Besides caffeine she's completely on breast milk and fortifier. She still has her feeding tube and will for a quite a while still. But no IV!!!! One less thing on our baby! Now if we can just get off that CPAP!

Taylor was doing great weight wise. She climbed up to 2 pds 9 oz yesterday morning. Unfortunately, or fortunately however you look at it, she's been pooping like nobodies business. She had several eruptions yesterday. Anyway, she's down to 2 pds 7.5 oz (weighed last night). I made the mistake of saying I would take her temp and clean her diaper this morning. Yuck! It had leaked out all over the bed. As Michelle would say, the nurses have gloves. I should have let them have it.

I got to hold her this morning for a couple hours again and it went well sort of. I've told Michelle that lately I'm beginning to doubt myself a bit and wondering if I'm doing something wrong while holding her because it seems like she's had a lot of issues during those times. Deep down, I know most of the problems are the CPAP (nurses have usually verified that it is not working correctly) but I just want to be sure I'm not causing distress (like I do when I am around most other people).

Anyway, this morning's transfer to me was... how shall we say... not very textbook-like. Essentially the CPAP came off almost completely (the little Velcro mustache that holds it on came unstuck from the left side of Taylor's face) and the only way we kept it running for those couple hours was by placing the Penguin stuffed animal that Beth got her on top of the CPAP pipes (almost on top of Taylors face). Now I'm sure that McGiver would have been proud of our Penguin Pressure Point, but something tells me this is not how CPAP is supposed to work. The doctor wasn't very impressed either. She kind of gave one of those CPAP pep talks to the nurse and RT and myself, about how we need to find something that works. Uh yeah, couldn't agree more. Can you do that soon? "We need to use our standard approach", she said, almost implying that Michelle and myself were at fault for having some of our suggestions implemented. The RT basically said there were no standards, and that they are still trying to figure out what works best with this setup (they've only been using this setup for about a month). So I guess we are free to continue to make suggestions that will screw it up.

So Taylor was basically handed to me with a malfunctioning CPAP and a cute little Penguin where half her face should have been (for the record, my CPAP suggestions would never go so far as using Penguins). For the most part, we did quite fine thank you. Unfortunately she needed to be on oxygen during that time, so who knows how much was it or how much was my superior child handling skills. I'm in a relatively good mood tonight so I'm going with the later for no particular reason.

Taylor had a rough start to the afternoon. After the holding, I mentioned to the nurse how much better Taylor seemed to do on her stomach than her back. "Well maybe later.." was the response. I hate that rejected parent feeling... Anyway, she was on her back for the first part of the afternoon and did horrible. She needed oxygen and her sat levels were bad. Once she moved to her tummy things dramatically improved and she's had a great evening on room air with only a few drops.

She did burp up some milk one time when she was on her back. That wasn't pretty. It was leaking out her CPAP nose "thingy" and she was gagging and about every alarm that could went off. After the nurse sucked out all that precious milk, she recovered and things were ok again.

For whatever reason I'm in a fairly good mood tonight. I'm sure its because Taylor is doing better this evening. But maybe its because I got a pretty good night of sleep the last two nights (all things considered), and maybe its because Taylor is almost 30 weeks, and maybe its because I got some work done, and maybe its because I could joke around with Michelle on instant messenger for awhile and it felt almost kind of normal, and maybe its because I had a much needed shower this afternoon. I don't really know but it feels weird. I hope to go find my office (we've recently moved) and my desk and be at work for a couple hours tomorrow. That will be nice. Its nice to think about those things again.

There's a big part of me that's worried though. Because of the past couple months, I am almost afraid to feel good. Stupid, but unfortunately true. But what can you do? You gotta enjoy things while you can. I'll get to hold Taylor again in about an hour, and I plan on enjoying every moment of it. We can do 2 sessions of Kangaroo care a day, and go as long as we want as long as Taylor is tolerating it. There was just a mis-communication the other day.

BTW, I added some pictures to the slide show. Michelle's Grandma Burnice took them. There are a couple really good ones that I like a lot. One has Taylor with her eyes open. The other is Michelle looking at Taylor and Michelle looks happy.

Happy Birthday Tristan

Today was Tristan's 5th birthday. For the first time in a very long time Tristan, Haylee, Michelle and myself were able to get out and have some fun togehter. Tristan celebrated his birthday at the Children's Museum. The kids all had a blast. Aislinn and Aidan were there with Uncle Casey and Grandma. Aunt Shanon and Uncle Juan came. And both Tristan and Haylee were happily surprised to see Lilly, Stuart and Glenn. Afterwards, we met up with Grandma and Grandpa Melling at BJs for a good dinner.

Big thanks to Mary and Beth for staying with Taylor while we were out. It felt very good to get out as a family and we really appreciate it. Taylor must have appreciated it as well as it sounds like she only had a few alarms go off in the afternoon.

Tonight we are all staying in one of the rooms here at the NICU. We really like the nurse Taylor has tonight and feel comfortable with one of us not being in her room tonight. The doctor apparently allowed only 1/2 hour of kangaroo tonight. It was a surprise to us, and its not worth stressing Taylor for so little time. In some ways I suppose we are robbing her of what she really needs, but the amount of stress she has to go through before/after makes it not worth it to her. We'll discuss this more in the morning with the doctor.

Doctor was just in

Taylor does have some fluid on the lungs and it does concern the doctor. The main worry is the that the ductus arteriosus may not be closing like it should. This is basically a valve to the heart and lungs that is suppose to close after birth (the placenta provided the oxygen when she was in the womb). Its something we've been aware of as a possibility. She's not showing any other signs of problems right now (minus the sat levels varying and the fluid sound), so its basically a wait and see. There is no heart murmur, her blood pressure for the most part has been stable, and her heart rate for the most part has been stable. Her apnea spells seem to be less today as well.  Anyway, if it needs treatment, they'll probably start with indocine. If that doesn't work, surgery may be required (but that's only a small chance). 

The plan is still to ween her from her ivs and remove the PIC line within a day or two. The caffeine can be given orally. They are restricting fluids a little more and have moved up to CPAP level 6 (from 5). The CPAP will just be giving her some more pressure now to help. There's are of course side effects to increased pressure and increased oxygen. Hopefully, Taylor will respond quickly and she can get back on room air and less pressure.

They don't want to remove the CPAP anymore during holdings. And they are recommending that we consider going down to one kangaroo care sitting a day (but perhaps a little longer). We had already decided to give her a break this morning. Last night's session with me didn't go to well. The mustache piece that holds the CPAP on her face was coming loose, and the CPAP wasn't functioning very well. Her oxygen sat levels were all over the place and there were a lot of alarms during it. It was still nice to be able to hold her though.

Today is Tristan's birthday. Michelle and the kids are on the way to the hospital right now to pick me up. Beth is coming to spend the day with Taylor so that Michelle and myself can be with Tristan. We really appreciate it. Hopefully tonight we will get one of the family rooms here in the NICU and we can be together as a family. I haven't heard yet if we got a room (there are 2) or not. I begged pretty hard this morning for one though. 

2 lbs 8oz

Our baby girl is growing!

Her oxygen saturation levels were all over the place last night and through the morning. She's back on room air right now, but its a bit concerning to me at least that she has needed so much more oxygen lately.

The nurse this morning said she heard crackling in her lungs again. We'll see what the doctor says this morning. Hopefully its nothing.

This blog

So a while back I started writing status e-mails to my work. As with every e-mail I write, they started getting longer and longer and longer. They soon became somewhat therapeutic for me. I wanted everyone at work to know what was going on, but it became more important for me to just get some of the things that had happened out of me so I could digest it better. Over time, the e-mails got more and more personal and I probably was sharing things I wouldn't have otherwise and things Michelle would just assume I didn't tell others. It just kind of took a life of its own.

I mentioned something I had wrote in an e-mail once to a family member and they asked if they could be included. Then others asked, and others asked, and some were sending it to their friends and others were wondering why they weren't getting the updates as well. I didn't mean to exclude anybody. They were work e-mails so it seemed kind of weird to just send them to everyone, but I started doing that. 

Finally, I decided I wanted to do something different with them and really try to get down everything that had happened so that Michelle and myself and Taylor could look back at this fantastic voyage in the future. So I created this blog. A lot of this stuff was just e-mails I wrote over time to work. I've dumped them in here. I'm going back over things and filling in details, and I've also added some things that were more personal in nature and not work related (a couple bad poems for example). Anyway, for what's its worth, enjoy...