Sleepless nites?

Somehow I thought the hospital would have gotten her onto a good track/routine by now, and it would be smooth sailing... boy was I wrong! Things have been mostly good, except for the 4hours every evening when she is screaming her head off. The rest of the 20 hours in the day are a dream! I guess I can deal with 4 horrible ones to get the rest of the day good!

She weighed in on Wed. at 8 lbs 2 oz.... Holy Cow that's a POUND in one week!!! See, being home is good for her!

She's Home!!!

What else is there to say really? Oh yeah, she now weighs 7 lbs 6.5 oz!

3 Princesses

Well, here we go.... 3 little girls! Who would have thought? The girls have never been so happy in their life! Brooklyne gave baby Tristan nearly a thousand kisses, it's so nice to have them all here together finally!

Positive Attitude

So, after a difficult afternoon for me, Tj really helped me to see that all in all, it's positive news. He spoke with the doc another time, and she confirmed that unoficially the sonogram looked good, so as long as it passed by the radiologist in the morning then she would be good to come home.

So, I decided it's easier for me to handle to get my hopes up and expect to bring her home, and then be let down, than it is to not get excited at all. So I have begun my finally stages of "nesting." I mean, most pregnant women don't get the kind of lee-way time I have gotten. Granted nothing more has gotten done, but now when I clean my house I am not uncomfortably pregnant, and I have been able to potty train Brooklyne in this time, so there have been advantages.

I am preparing for her to come home tomorrow, although it's still at an unknown. I am supposed to call the hospital tomorrow morning and get the word.... Let's all hope my preparations aren't in vain!

(oh yeah, and she weighed 7 lbs 5.9 oz Wed. nite ---- and that should be real weight seeing as how the chest x-rays don't show fluid build up. Yeah!!)

STRETCH........

So I thought somehow that Thursday was going to be some magical day where they called and said she looked fantastic come pick her up tomorrow... maybe I set my expectations a tad bit high. The did call, it just wan't quite the way I had imagined it all would be (it never is).

The word is the chest x-ray from today looks good, so there's no build up of fluid in there. They ordered a sonogram and the unofficial word on that is that it too looks good. They did find today that she has low sodium, so now they continue to monitor her electrlyte levels.

I just checked the answering machine and the doc said on there that they would check the chest c-ray again on friday (tomorrow) and if that looked good then going home tomorrow is a possibility.

Which that all is fantastic news, and really, what we've been waiting for, for so long. But somehow I'm still a little sad. I guess I just thought that we were going to know today and we could plan a big special day tomorrow to bring her home, and now they've stretched her out another day. So right now, it's a "maybe" that she'll come home tomorrow. They have to run all their tests again and they have to be consistent with todays, and then they will give us the word. I think at the latest they are thinking Saturday, which is still fantastic, I just thought it all would be happier and it's kind of a drag that "she's ready to come home, but.... we have to do all this other crap still." At that rate, she's been ready to go home the whole time, you know, I mean minus all the tests, procedures and stuff.... ugh, what a tiresome process.

So, once again, I end my day with, we'll see how she looks tomorrow.

Pray for Strength and Health

Okay, so I just got off the phone with the doc, and the news is looking good, but there's a small catch... (figures) He said that she is looking really well, that the cardiologist is pleased with her heart and that the fluid around her lungs is gone. I asked when we were going to bring her home and that's where the catch comes into play.

He said the only issue they are hanging onto is the formula thing. As many of you know she has been on a special formula that contains harldly any long-chain-fatty acids, because of her Chylothorax (you can google that if you need more info). Anyway, He said the only way we would know for sure if the condition is gone is if she can tolerate regular formula. He said that although some babies can thrive on this formula, he would rather see how she does with it while she is at the hospital since she is doing so well. So the solution is to go ahead and wean her from it.

Now, this whole time when I thought about her weaning from the formula, I thought it was going to be a terrible drawn out process like everything else has been. You know, a drop here, a drop there, whatever. NOPE! He said that as of today he will change her feedings to every other one will be straight regular formula, and then tomorrow they will cahnge to ALL regular formula, and give it a few days, then re-check for the effusion (build up of fluid), if all is well, then she should come home then, he said hopefully this weekend-ish.

That being said, this is where your prayers come in. PLease juse pray that she will be able to have the strength she needs to tolerate the formula change well, and that the issue has resolved.

I feel so much better having actually spoken with the doctor. He seemed to have a very positive outlook on her progress, as well as the other doc from last week. It's just some of those terrible nurses. Not that I'm down on nurses, but some of them just seem so brash.

Here's crossing our fingers for Tristan!!

One month birthday!!

So, we have arrived at her One month birthday, it seems as though I'm torn, there is not much to celebrate, and then of course there is so much to celebrate for. Although we are still awaiting her homecoming, we are so proud of her progress and how strong she is. She's gone through so much these last few weeks and has fought so hard, I can't believe how awesome she looks. To look at her and hold her, you would never guess the amount that she has been through.

We are so thankful for all the wonderful family and friends that have shown their love and support during this time. Thank you for all your thoughts and prayers, I definitely think they have not only aided her in a faster recovery, but they have helped us to be able to cope with the situation.

As far as her homecoming... it's still a little unknown, we should know a lot more tomorrow (Monday morning) The nurses all weekend have been commenting on how great she is doing and how they think she should be at home, not there, we just need for her primary doctor to see her again and then get a few things cleared up from the cardiologist or the surgeon (whichever I can wrangle on the phone first!)

Anyway, I don't have much else to say, but how I could I let her exact one-month birthday pass without saying something?

Mommy and Tristan

Today I got to go take super fun hi-risk infant CPR classes.... yeah! Well, it wasn't too much different than taking any other infant CPR, except they covered possibley going home with monitors and what not, which we probably won't have to do. Also, apparently there's a few differences in CPR if it's a cardiac patient, so all those who may ever watch Tristan will have to be brushed up on the "heart baby protocol." Other than, fairly uneventful.

Tristan is still doing good, I bombarded the nurse with questions, of which she could only answer or speculate at a few, but it still was better than most other nurses. As well, I did ask the question, "when is she coming home?" And she said that she was wondering the same thing, she had told someone (don't know who) today, why is this baby still here, she looks great and is doing great... SO I hope that means that next week really is a possibility.

Now that she is in the intermediate area, I have made lots of other new mommy friends, And have been able to meet the parents of Tristan's "neighbors." It helps the time to pass and not be quite so boring if you have someone to talk to.

One foot out the door?

Tristan is doing fantastic! She was recently moved into the Intermediate Care Unit, which is still part of the NICU, just for babies that need to gain weight and grow to go home.The Doc called today and said twice (count 'em TWICE) in the same message that she was doing great! The problem with the Chylothorax has cleared up, so hopefully we will begin to be able to wean her off the special formula since I found out today how much it's going to cost us, and of course the insurance isn't going to pay for it... figures.And the fluid on her lungs has decreased and is just part of the lungs healing from the RSV.She lost half an ounce, nothing too significant in my book, compared to the pound from the other day, which was apparently real water-weight loss. She is eating like a mad-girl, she has been eating 55-60 cc's at every feeding, so they are going to try to increase her to more than that. Yeah!Also, we are signed up for CPR classes for tomorrow, and that's supposed to be a sign that the end is drawing near.But all in all, she is continuing to do well, no word on a day to come home yet though.Here are some pics of her from tonite. TJ and Grandpa Hughes think that she is going to have red hair. I'm not convinced, but she surely has "invisible" eyebrows like her mom. We'll see!!

She smiles!

And she cries

She's on her own now -- breathing that is!

In efforts to manage these two sites, this one and the other at http://www.caringbridge.org/visit/tristanaryazufelt I am going to cut and paste the same post. Real lazy of me, huh? Oh but I did leave this out on Tristan's other journal... I apparently have some kind of stomach flu or virus today and I feel terrible, Just thought you'd like to know!!

Here's her progress:


So here's the latest and greatest.... They moved her from the critical care NICU to the intermediate care unit, so that means that she is doing well and stable. TJ said when he went in they had removed the pulse-ox meter (that measures the amount of oxygen in her blood, it's usually connected to one of her toes)
Later I checked in and they had removed her nasal cannula (oxygen tube) completely and so she is now completely breathing on her own, jsut room air!! That's the biiggest milestone!
Other than that, there are still a few "issues".... there is some fluid build up on or around her lungs that they are investigating. In the process they gave her some diuretics to pee off the excess and she actually lost an entire pound. A whole freakin pound! So she went from weighing 7 lbs 13 oz, to now weighing (yesterday) 6 lbs 15 oz, which is what she was at birth. As of today she gained back 1 whole ounce! (Who knows if that's real weight or water though?) Needless to say, she's beginning to look rather skinny. I just hope that she doesn't continue to lose anymore weight.
I've kind of gotten the run-around with when she might come home, they told me today that the two hang-ups on that are her fast-ish breathing as well as a condition she has called something Chylorthorax (extremely professional)
The Chylorthorax has to do with the absorbtion of long chain fatty acids, she has been on special formula that doesn't have the long chains, just short chains, that way her body can absor it in the bloods stream. The long chains typical go up a vessel near the heart to do something (once again technical) and hers has been leaking since her surgery. They think that is they can avoid it having to work right now that it can repair it's self and heal, then we should be able to re-introduce regular fatty formula. Until then, they don't know much about this formula, apparently it's something new, and so are trying to figure out what's going on and what they need to be doing with it. There's a good chance that we might have to giver her this stuff when she comes home, so the social worker is looking into wether or not our insurance will cover it since it truly is medically necessary. I don't see why I couldn't swipe a few cans from the hospital... Okay, we'll just see what happens. And of course nobody knows how much the stuff costs, so we'll see.
Other than that, I finally got to dress her in some jammies. I'll put a picture up tomorrow. I think I'm going to glue a bow on her head now too, it shouldn't interfere with anything.
So we don't know when she will be coming home, just everybody pray that she gets to be at home with her family for Christmas, that's all we want this year.

Out of the PICU into the NICU

It's official, she was tested and she no longer has RSV!!! Because she tested negative and she's getting so much better, they moved her out of the Pediatrics ICU and back into the Neonatal ICU, which is a step inthe right direction.

She's been eating well, she's up to about 2 ounces at each feeding, which is great. They told me last nite that they were going to remove her last IV line today, and they have now moved her respiratory treatments to every 6 hours, and so now they just have to work on getting her off that oxygen.

We are really hoping that sometime this week she'll be able to come home! I guess I'm finally going to have to clean out the car and make a third carseat fit. We haven't gotten to that point yet!

Our Family Picture

So this is our first family picture with Tristan. It's so glamourous, but hey, atleast it's all of us, and it's taken, which usually never happens!

Yeah, the girls got to see the baby, which was so nice, and TJ took Tristan her first little dolly from Daddy.... Apparently I'm the only slacker that didn't take her any presents, oh well.

Tristan's getting well pic

Here is Tristan's latest picture! She is so beautiful! Madison and Brooklyne went and visited her today and took her some new blankets (compliments of grandma of course!)

Baby Tristan

Tristan was born on November 9, 2007 weighing in at 6 lbs 15 oz and 19 1/2 inches long.
The day after she was born the doctors heard a strong murmur and wanted to run tests. The tests showed that she had a heart defect. Something called a coarctation of the aorta. A portion of her aorta had narrowed too small. She was then taken into the Neonatal Intensive Care Unti for further monitoring.
They then decided that she would need to have surgery to remove the section of aorta that was narrowed, so after being transferred to the Children's hospital where the neonatal cardiac surgeon was, she underwent vascular surgery at just 7 days old. She came out of surgery well, and then her health went down hill when she got RSV.
The RSV set on very quickly and within hours was reintubated, and put back onto a breathing machine. She spent the next 10 days on a ventilator trying to get over the sickness.
As of Thursday (11-29) she was removed from the breathing machine and put on an oxygen tube. We have been able to hold her as much as we want since then. Which is a nice relief since we havne't gotten to hold her for two weeks now.
We still haven't been able to bring her home, but it's not that far away. She is fighting the sickness well and making a good recovery. Her little mended heart has held up to the sickness well and thr doctors are happy with her recovery from surgery.