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...