one month old today.

and it's been quite the month. i think i need a nap.

one month stats.

Darla Jane had a "routine" check up at the pediatrician. She was looking really good.
But she is our little one for sure.

Height 19 in. - 4 %tile
Weight 7lb 3 oz - 5 %tile
Head Circumference 13.5in - 1 %tile

They checked her oxygen saturation there too and 88%. The Dr had warned the nurses not to be surprised but that Darla Jane will probably be blueish and had really low sats. They were all surprised to see how good she looked.

pictures from her first few days at home.

we came home to signs, balloons and streamers from auntie and the kids. getting cozy at home.

and a couch that is just right.

darla jane also had visits from 2 of her great grandmas.

all home together...

yes, i know. we've been home 4 days. and i haven't posted. i'm busy. :-) coming home with our little miss has been a lot more work that I thought it would be.
i will try to keep up with the posting the best I can, i know little miss darla jane has quite the fan club.

Around 4:oo Monday afternoon we were finally on our way home. Mom, Dad and baby. I was nervous about just putting her in the car and driving home. Nathan said "Hurry, lets go. Before they tell us we have to leave her here. I sat in the back seat of the car so that I could keep an eye on her. We got home and all of her supplies were delivered, including a nurse who helped us set up Darla Jane's food pump. It kept beeping and the nurse told us it was probably just the formula making it stop. Well after 4 hours of it beeping and having to reset it we called the home health company and they said they would have a new pump delivered...before midnight. So just before midnight a new pump came and we haven't had a problem since then.

She has slept well every night since we have been home, usually getting around 8 hours. That doesn't mean that I get 8 straight hours...with changing her milk in her feeding pump, medicines and "expressing" myself I'm up a bit. But last night I worked the system and was only up twice for about a half hour each, from 11 to 7ish.
Her days are usually a little more cranky but I will take a cranky day over a cranky night any time. So most of the time during the day she is wanting to be held, and varies on how she wants to be held...and who she wants to hold her. And if it's not right, she will let you know. It is because of this, and the time it takes to manage everything that I am so thankful for all the help we have. With family in town and meals being brought in. Nathan and I would definitly not be able to do this on our own.
Thank you.

But she is doing great...getting stronger each day.

going home!

today IS THE DAY! we are taking our little girl home to be with her family. we are excited, with a little underlying hint of nervousness but mostly excited. We are just waiting a bit at the hospital. We need to make it to the house about the time the home health nurse does with the equipment so we have to plan our departure to correspond with that. Darla Jane just can't be off her continuous feeds for too long.
She is being sent home with an NJ feeding tube and will need to be on continuous feeds. So the home health nurse will bring a pump for that. We will also have a pulse-ox meter and oxygen, just in case. . .
She is also being sent with some daily medications...but not many.
Lasix to help her kidney function.
Aspirin to keep the blood from clotting around the sano shunt.
Zantac to control the acid in her stomach.
and Tylenol and Lortab for pain, as needed.

We will follow up with our pediatrition this week and the cardiolosist in about a week and a half. Which is also when they will redo her swallow study. We will see then how well she is doing to determine when the following appointment will be.

happy easter.

from our littlest Easter bunny.Although she is surrounded by the commercial aspects of Easter we can never forget the true reason for this day. The sacrifice that was made by Jesus, so that we can return to live with him again. To return to our families again. To repent and always allow ourselves to be worthy of such a great blessing. He bore our pain and affliction. He knows who we are and what we are going through. He blesses us when we turn to him in faith. Through trials and hard times he can comfort us because he knows what we are going through. He has pulled us through this first step in the process of improving Darla Jane's heart. And I know He will always be with us through this journey and any journey that life will take us.

Happy Easter to you from our family. May you take time today to thank our Savior for the sacrifices he made and the example he is to us, and our Heavenly Father for allowing this all to happen. I know the Gospel is true and I am eternally grateful for the blessings it continues to bring to our family.

still ok.

Here's is little miss going for a ride on the elevator down to get her chest xray. She had to stay awake so she didn't miss a thing. Darla Jane's been in that room for a while... Doesn't she look so teeny tiny on that big table.

The xray appeared to be normal. The fluid in her lungs has gone down. So they have reduced her diuretics. They also bumped her feeds up to 17ccs and hour, which was her goal. 1/3 of that is formula. But she did gain almost an oz. since yesterday.

She is still on track for getting to go home on Monday! Please, keep the prayers coming...

sooo...

I almost didn't want to post about this, thinking it might just be too good to be true. But there is a chance that we might be heading home with this little cutie at the beginning of next week!! As I type it I still don't almost believe it. She is doing so well, and so all the doctors and nurses feel comfortable sending her home. Now, if you ask me if I feel comfortable bringing her home you might get a different answer. Am I excited? yes. of course. But it helps when you know you are surrounded by a whole building full of people that know exactly what to do if something goes wrong. The nurses will educate us on a whole notebook full of things we need to know, do and look for. that's reassuring, right.She had been loosing a little weight and the nurses were worried about that, so they are mixing formula in with her breast mik for extra calories. In turn she is has been a bit more fussy the last couple days. She is now on medicine for gas and reflux. Hopefully that can calm her belly a little. She's not diggin on the formula.

swallow study.

Do over. She didn't pass. But just barely. She swallowed fine, but a little bit went down her airway. Because she didn't cough it out they decided, for now, it would be best to keep in her feeding tube.
Her echos and xrays looked good.
She passed her hearing test today too.
And she is still doing well with out the oxygen tubes. Really well even, the nurse has to adjust the alarm on her monitor because she was going over 85 and it kept dinging at her. It's not a bad thing for her sats to be high.
She is also on the last day of her antibiotics.
She is doing well! Go Darla Jane! Go!

(because I can't post without a picture)

3 weeks old.

And we finally have her in some clothes. :-) Well, a shirt at least. She is now up to "full feeds" in her nj tube. Which is 15ccs and hour. That is about 1/2 and oz an hour, and is tolerating them very well. She will go in for her swallow study tomorrow and see about the possibility of her being able to eat without the feeding tube. She still has a little fluid in her lungs so they are keeping her on medication, lasix, to try and get that fluid and any other fliud built up in her body out. It helps the kidneys to do there job I guess. AND...she got her oxygen tube taken off today! This afternoon and evening she was keeping her oxygen saturation levels pretty stable without it. Her saturation levels are lower than the average newborn, she's at 75-85% generally. But look at how much of that cute face you can see now!

time to get on "the floor"

so today was the day! only 8 days post-op we were moved up to "the floor". We had hear a bunch of different time lines of when hlhs kids usually go up there and the shortest time frame we had heard was 10 days. and we beat that! Little miss is doing so amazing! And I know I say it time and time again but I know that it is a result of so much faith, prayers and fasting on behalf of darla jane from so many of you who care about and love her. thank you.
Here is a picture of them moving darla jane out of the cicu. And hoping we won't be back until she is strong and healthy and ready for her second surgery.time to get settled in our new room on "the floor".darla jane, wide awake, checking out her new digs. I'm sure she was excited about the window, through which we can see the mountains!As of this evening she was up to 12ccs an hour so by the middle of the day tomorrow she will be up to the 15 which will put her at full feeds. Then they will try to switch her nj feeding tube to ng. Not her tube goes past the stomach and straight into the digestive tract. When they move it, the test will be to see if her stomach can tolerate any milk in there.Needless to say, we are very happy about how the day went today. :)

No more hoses!!!

She wasn't very happy about it, but she got the last 2 drain tubes out and they pulled out the jumper cables today as well. The jumper cables were just in case she had any heart arrhythmias they could connect her to a pacemaker or jumpstart her heart if it stopped.
Don't need any of that anymore!!!

After that it's easy to be the good guy. She's even starting to like her Dad to hold her.

Now they are just trying to remember why she is still in the PICU. They may even send us up to "the floor" today. But most likely it will be tomorrow.

I read a good quote today in the book "Before My Heart Stops" (you know it’s a good one if first of all I'm still reading it and second that I'm quoting from it) from John F Kennedy, "The problems of the world cannot possibly be solved by skeptics or cynics whose horizons are limited by obvious realities. We need men and women who can dream of things that never were,". I must say thank you to all the dreamers, the doctors and nurses that have given us this new chance at life with Darla Jane and especially all of you dreamers that have been supporting us in so many ways. In that way I say Keep Dreaming!

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rainy days and mondays don't get me down.

at least not today! because today they removed darla jane's ra line which means she's doing better. AND...I was able to hold her! YEA!! a week was too long for this mama to go without holding her baby girl. and I may or may not have held her for about 6 hours today. :-)She is also doing so well on her feeds. She is actually up to 9 ccs an hour. which is about 6oz a day. And is tolerating it very well. They even bump her up every 6 hours now!

Tomorrow her other 2 chest tubes come out. And the word on the street is that she may be moving up to "the floor", and out of the CICU on Wednesday. Keep those prayers coming!!

I am amazed everyday at how much she is improving. Her numbers are good and her new favorite color is pink. Generally, these little ones with hlhs have a bit of an ashy or blue color in their hands, feet and lips. Not our darla jane. She's pink. Everyone comments on how great her color is! We are just so thankful for the miracles that are happening every day.

you make me want to smile.

Little miss does a lot of this... But today she got to visit with her brother, and sisters...

which made her very happy!

she might also be smiling because she got off one of her medications and she is now up to 4ccs an hour on her feeds and those increase by one cc every 8 hours now instead of every 12. so her belly is able to handle the increased feeds which means...wait for it...

they will be able to take out her ra line tomorrow. That is the line that goes right into her heart. and when that is out... WE GET TO HOLD HER! there is a good chance tomorrow this little babe will be in our arms!

that is a couple of days sooner than we most recently thought and a week sooner than we initially thought. win.

she is doing so well.

that girls got clean hair.

Lists of darla jane's accomplishments for the day.

She got one big tube that was draining from her belly out.

She is now up to 2ccs and hour of breast milk. (which is just under 2 oz a day). She will go up one more cc an hour every 12 hours if her belly can handle it.

AND she got her hair washed. I think it's going to be curly.

also she is "doing so well" and stable enough that she's going to be moved back to 1 on 2, nurse to patient ratio.

standby. patient not ventilated.

Today was a big day for Darla Jane! She got her peritoneal drain out which is one of the the 3 that are near her heart (once she gets the other 2 out we will get to hole her again!),her catheter(which I'm sure she really wants me telling everyone...but it's one less tube connected to our little lady) AND her ventilator! She is still needing oxygen but not too much...and she is taking breaths on her own! I can't believe the progress she is making.

Here they are removing the breathing tube.

Look at me! no ventilator. But she was mad mad at us for bothering her.

All that work can make a girl tired.

Today was a day. The Lord really knows how to take a soul who feels like they are getting close to the end of their rope and provides a light for them. A place to hold onto and help climbing back up. I know we will be on a roller coaster ride but I and thankful to know that the light of Christ will help to bring us up from our lows and help us to more fully appreciate the highs. Every day is a blessing with Darla Jane and with all those in our lives. It's not worth getting upset at the little things. It's more important to love and appreciate what others bring into our lives.

and after I started this post...the day got even better! Since she is off of her sedation meds Darla Jane is getting back to herself again. She was awake for a long while this evening and I could tell she was feeling much better. When she did get a little fussy all that came out was little squeeks. When she they put the breathing tube in, the tube goes right along the vocal cords so it will take a little time for her to get her voice back. But for now, she's out little squeeker.

I think this may just be my new favorite picture of our little miss.

AND...if all that wasn't enough we thought we'd try a pacifier. The nurse said a lot of times these little kiddos build up an aversion to things being in their mouths but not our darla jane. She took to it like a pro.

Today was a good day.

mama's milk.

ok I might be the only one excited about this one, but today Darla Jane got to start on mama's milk. It is through a feeding tube and it's only 1cc and hour, which equals to less than an ounce a day. BUT...it's a start. Praying that her little belly will be able to tolerate it and that we will be able to gradually increase the amount that she gets. Here is little miss waiting patiently while the nurse gets the milk going. and there's the good stuff!

scripture for the day.

Mark 10:27 ..."with God all things are possible."

problem child.

notice now she just has a little bandaid on her chest!

They Drs and nurses were able to keep Darla Jane fairly stable after the closure of her chest yesterday. A bit of medicated intervention to balance things out, which is normal but this morning when I got there she was going great. There is even talk of working on weening her off of the ventilator. Darla Jane decided she needed to cause a little trouble and thought she'd work on removing some of her tubes herself. she knows she doesn't need them. So now she gets to sport some pink mittens so that she isn't able to pull anything out. And if that wasn't enough trouble she is now being taken downstairs to try and place her NJ (feeding) tube in under xray because the 2 previous times they tried to place it the tube wouldn't go in the right way. So the nurses and respiratory specialists had to pack up Darla Jane and all of her business and take her on a walk. But if that's the kids of trouble she likes to cause, I'll take it over issues with keeping herself stable.

It takes the crew to move Darla Jane and all of her attachments though.

two weeks old.

Today Darla Jane turned two weeks old. And to celebrate she got the incision closed from surgery. Which is exciting. It means that she is doing well and that the swelling in her body is gone. We were told they usually close the incision 3-5 days after surgery and hers was closed 2 days after. yea! The day or two after the incision is closed she needs to be watched just as closely as the days after surgery because of the pressure change that can occur. But she has been stable since this afternoon and they are working on slowly weening her off of her ventilator too! She is opening her eyes more now too and is a bit more responsive. She is still pretty medicated but it is nice to at least see her respond to some stimulations like touch or noise. They also removed one of the lines that was going in through her belly button. But take one down and add another. She will need a feeding tube put in, hopefully for just a little while. They tried to get it in today and weren't able to so they will try again tomorrow. She isn't able to begin the feeding through the tube yet they we just trying to place it while she was sedated from the procedure today.

in my daughter's eyes.

i am thinking of the martina mcbride song now, with Darla Jane opening her eyes a little bit now. i feel like i see some pain...but mostly i see the future. and like the song says, "the miracle God gave to me, gives me strength when I am week. i find reason to believe, in my daughters eyes. And when she wraps her hand around my finger, oh, it puts a smile in my heart. Everything becomes a little clearer. I realize what life is all about. It's hanging on when your heart has had enough; its giving more when you feel like giving up. I've seen the light: it's in my daughters eyes." oh. how i love that little girl. and oh how much we can learn from her already. she is an amazing little spirit. I know it's not possible for many or youo to come visit. but just know, if you were to you would feel the fight in this little girl. she has more spirit that most people i know. what a blessing she will be to so many people. love her. and love all of you.

one day post op and doing great.

This is a picture of Darla Jane getting her dressings changed. They ask the parents to leave the room while they do that...just to prevent as many possible infections as possible. But an update for the day. Darla Jane is doing GREAT! The nurse has to keep having the drs coming in to check numbers and see if they can be right. But they are, she is getting stronger and going down on lots of her medications. Her swelling is not as bad as we had anticipated and there is word on the street that she might even be able to have her incision closed as soon as tomorrow night! yea! one step closer to recovery.

prayers are continued to be answered. they are working in regards to darla jane's recovery, our ability to cope with all of this, the response of the kids at home and how they are coping with it all, the doctors and nurses being aware of Darla Jane and her needs and the willingness of so many to help us try and maintain order at home.

thank you. thank you for all of the prayers. Prayers and faith are what are helping. thank you for the help and support.

and Go Darla Jane Go!

"Can't get any better than that"

She's been back in her room for a little over an hour now. She has had tons of doctors and the Surgeons in and out checking her numbers since then and are all surprised at how good her numbers are looking this soon after surgery. One doctor asked if one of the big indicator numbers had been written down wrong because it is almost perfectly normal. Another doctor commented after looking her and her numbers over "well you can't get any better than that" referring to her condition so soon after surgery. Keep the prayers coming and she might be out in record time! She sure has an amazing support team! You guys are all so wonderful we have definitely felt the effects of so many people praying for her and us.

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Here are some extra pictures of her new setup.  As you can see there are LOTS of things she is connected to.  Now startes the ins and outs of medications to keep all of her stats balanced.

 here is a cute little piggy shot (for phil). :-)

 and yes, she still has her bow...it stayed on all through surgery.

This is what she will look like for a few days until they close up her chest. Right now she is still heavily sedated so she wont move too much.

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New parts

This is the "Sano" tube that was added. The Surgeon said hers is probably a little shorter but looks the same.

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