So sorry it's over

The tree came down tonight ;( I guess it does all come to an end. Ella walked around singing "Christmas is over, Christmas is over". I guess it is.

We had a great time! Ella started early by going to Nana and Papa Stauffer's house early and staying later...she just got home yesterday! She was spoiled rotten by both sets of grandparents. This was the first year that she really "got" the whole Christmas idea, so it was super fun for all of us, too! Here are some pics of the kids: ENJOY!

Hadley in a box...

Nana Lyn in a box.... Keith (Janelle's Cousin) built this house out of boxes for his daughter, Aislyn... Looks like Nana likes it, too!

Ella and Aislyn playing....

Christmas has arrived

We have welcomed Christmas into our new home; we wanted to share the cheer with you!

Welcome to our new living room; all ready for Santa!
Our first ever Christmas tradition of decorating a gingerbread house. I love Ella's face-- she is either plotting about how to get the candy into her mouth or is hiding the fact that she already put it in there.

The Stockings are hung on the Chimney with care...

In hopes that St. Nick soon will be here .......

We Love Christmas.

6 months ago today

Hadley Today:
Hadley 6 months ago today:

It's still amazing.

The house

The House-- We close Nov. 6th!

Happy Birthday To Ella

Ella's 3rd birthday is Oct. 25th-- her party was this weekend. We reserved a room at RoundTable Pizza and the kids all dressed up in their Halloween Costumes. Ella was a little pumpkin... She had a great time being the center of attention! Check out this picture of Ella and her cousin Logan in their Halloween Costumes!

Sisters

Lil Miss Bubbles...

Offer Accepted!

It's official! Our offer on a home was accepted and are just weeks away from completion of "OPERATION: NEW HOME". We'll keep you posted. I've tried to post where our new house is but it's not letting me do anything tonight. We'll take some pics soon and post them on here.

Moving on!

SOOOOO... about two and half weeks ago we decided that we wanted to buy a new house. I guess you could say it was a whim, but it has developed into so much more. We explored different options of what to do wtih our current home since the market (for sellers) is not all that great. Our final decision: renting. So we listed it for rent on Friday--two days ago. Well, we officially have renters today--they want to move in next month!!!-- that happened so much more quickly than we thought! So, now we are hoping to make an offer on a house this week (we have two that we really like, but are leaning toward one great one in Nampa) and close as soon as possible! Sort of exciting, and sort of scarey! We'll keep you posted!!!!!!!!!!!

the girls, an update!

Hello! We had Hadley's cardiology check up on Monday and I am happy to say that everything is great! Dr. Womack said that there is absolutely no indication that she will have to have surgery again, EVER. Our next appointment with him is not for 6 months! Hadley has grown so well and her heart is growing right along with her. Way to go, Hadley girl!

Also, Ella started preschool last week! She is enrolled in Discovering Languages, a spanish emersion preschool in Nampa. She is really having a good time-- already saying things around the house that we have no clue about! I suppose in this case it will be okay that our nearly three year old is smarter than we are....

Peace and Love to you all!

FLOWER POWER!

3 months, really?

On one note it has gone so quickly and yet on another I ask myself, "has it really only been that long?" regardless, three months it has been! Here is Hadley posing in the back of our van (yes, I said van. We have officially entered family-dom. We own a van)--she is so fun-- smiling tons and letting us get to know her sweet personality. She works hard to get sounds out and is catching up developmentally. Today at her monthly weigh-in she weighed 11 lbs 10 oz... up from the ten pounds she was just 28 days ago. Good job, Hadley! With the exception of last night :( she has been sleeping through the night and is just a very content little girl! I think we'll keep her around for a while! Casey started his first year of teaching last week, and he is still sane so he must be doing okay! I am starting back to work on Tuesday-- sad to leave but so happy to have some away time as well. Ella is still developing into her fun active self-- wanting to play patty cake or hokey pokey with Hadley all the time. Hadley has a lot to keep up with!
Hadley's next cardiologist appointment is just 10 days away. Iwas so happy to have her back at our last appointment that I didn't think about how nervous I could be for this one. I feel really opyomistic-- she seems to be doing so well-- but of course the "what if" lingers. For now, we'll just enjoy every smile!

ella the cutie!

Here's Ella enjoying Swan Falls Dam. She spent a day there with her daddy and her good freinds swimming, eating and running around! And, Ben caught her in this perfect picture!

life is normal

Hello!
Sorry for the long pause on posting!
Things are going well in the Boothby household! Hadley had her two-month appontment last week-- she weighs 10 lbs! It is good news that she is gaining weight-- she is in the lower 25% as far as growth in all areas, but shows no other signs of heart problems. We will continue to watch her weight gain, but all sounds good! Her next cardiologist appointment is at the end of August. Our hope is that the branches of her pulmonary artery have continued to grow with her! We will be able to see how much that has happened at that appointment. She seems healthy and acts llike a normal baby, so we're feeling very hopeful!
We'll post pictures later!
All our love,
The Boothby's!

The Boothby family visits Miner's Jubilee

This picture set is from Miner's Jubilee weekend in Baker City. Check out the last two pics, they are of Ella when she was little taking a bath and the last one is of Hadley taken just yesterday. To us, they look so much alike...you be the judge!!!

Atomic Days and visiting family/friends

Here's some fun pics from our trip to Howe, Idaho!!!!

A New Kind of Minister

Hello- You may or may not know this, but Janelle's brother, Cody Stauffer, is a minister in Payette, Idaho. Check out his blog- A New Kind of Minister.

Atomic Days here we come...

Hello friends! Just a quick update before we head over to my in-law's house for the weekend and partake in the festivities known as Atomic Days! Janelle's 10 year high school reunion is this weekend and we're excited to be making the trip. Next weekend on the docket is a trip to my hometown for our very own fabled Miner's Jubilee Weekend. So we feel comfortable enough to go make visits because of the promising news our doctors have given us over the last two weeks. Yesterday Hadley had another pediatrician appointment and I (Casey) was fortunate enough to be able to take her!!! She weighs in at a whopping 9 lb, 1 oz. and is 21 inches long. She is GROWING!!!! We are so happy and yesterday was the first day that she was completely off the methadone without any ill effects. We just played it by ear yesterday and she didn't seem to need it. We helped her out by giving her some Tylenol yet even that amount throughout the day was minimal. Overall, she is doing very well!!! She even has slept between 6-8 hours at a time during the night, which mommy and daddy are very thankful for. That's all from our neck of the woods. Thanks again for your support, love, and friendship. It means the world to us. Don't forget to sign our guestbook!!!

Casey

Church pics

Hadley's first church outing

Friends, things are going well at home. We've been taking our time with Hadley, learning so much about her real personality and nature. Ella has been loving on her like we never thought she would as well so that makes us happy! The last two weeks have been filled with a couple of different types of doctor's appointments and we met with the surgeon who basically did the operation on Hadley (he lives here in Boise, yet travels to Portland so he can have adequate support to complete the surgery). He said that he thought she was doing well and had talked with her cardiologist as well. The only thing that we are dealing with daily is her withdrawing from her medications. Hadley's body seems to be very sensitive to small changes and it is hard for her to adjust to the decrease in medication. We met with a person from the Infants and Toddlers program today and talked about a plan to work with Hadley. Because of the surgery, she will most likely have some developmental delays. The person said that she looked good though given her circumstances. It's hard because there aren't a ton of milestones to see her accomplishing when she is only a month or so old. This program can follow for up to 3 years, helping Hadley however she may need it so we are hopeful and delighted to have this opportunity to work with such a great organization to get Hadley back on track. Not much else is going on here, we're taking it a day at a time. Both Janelle and I are trying to get back into our workout schedule at the Y and I'm trying desperately to get back into my groove so I can get back to teaching some classes and bringing in some income. The slideshow above is a bunch of pictures we took on Sunday of the girls in their church dresses. I hope that you are all in good spirits and that things in your neck of the woods are going well. Please don't forget to sign our guestbook if you haven't already. Have a great week!!!

Casey

Happy 4th of July!

Friends, I know it's the 5th officially, I just wanted to wish each and every one of you a Happy 4th yesterday. I hope that all is well with each of you and you are in good spirits. Ella got to watch her first fireworks show here in Caldwell last night with her favorite cousin Logan. Mark, Amy, and Logan came over and we lit off some of our own fireworks before going into Caldwell for the BIG fireworks show. It was a lot of fun and it was nice to hang out with my brother while watching our two daughters play in the grass.
It's been a pretty good week when Hadley is concerned. She was officially weaned off of her medication at the beginning of this week and almost immediately began to withdraw from the medication. This means high-pitched screaming and her being generally uncomfortable. We have been watching her closely and monitoring her patterns of behavior to see whether this is a concern for her. The hard part about all of this is that we don't know if she's in pain from the surgery or withdrawing from the medication. Some of the symptoms are the same in each case. So it has been up and down for the last couple of days and our doctor got us a prescription for the medication to administer in a smaller dose that she was previously on. So she does well for awhile, yet still has her uncomfortable moments.
We have a doctor's appointment with the pediatrician today to see if she's gaining weight. These are weekly appointments because they are monitoring that aspect very closely.
Yesterday was a great day, we had Janelle's brother Cody and his wife Lisa over to have dinner. Janelle's mom has been here and it's been great! She is such a HUGE help around the house and unfortunately we have to say goodbye to her today. She is heading back home. I know that Janelle and I seriously couldn't have made the transistion back home without her.
On a different note, we are also selling our Audi wagon so if anyone knows anybody who needs a used car, it's a great vehicle. I have included some pictures below of the last couple of days around the house as well as a picture of our car. You can check out our ad for the car on craigslist.org under the cars & trucks link in the "for sale" section.

Casey

Hadley Slideshow

Hadley is 1 month old!!! -- Dr.s apptment updates

Hello again friends, just another quick update from here at HOME!!! I love saying that. Anyways, Hadley had her first caridologist appointment yesterday and he was very pleasantly suprised by her progress. He did an ECHO with her and examined her...in his opinion, it wasn't as bad as he had originally thought (the narrowing in the pulmonary arteries). SO GOOD NEWS!!!! We usually would have to meet with him every week or two and he said he felt comfortable not seeing us for a month or so. We also can begin to slowly pick her up under her arms and slowly give her some tummy time. We just need to see how she feels. So, we are happy here. She is doing very well!!!
Ella and I went swimming at the YMCA yesterday and it was a ton of fun. She loves swimming. We also went to the park and had our own little "date" lunch. For us, that's Taco Bell so we can have quesadilla's --- Ella calls them "Pizza-dilla's" or "Pizza-guys".
So things are starting to get back to "normal". We just need to get back into our routine and we'll be doing better. Thanks again for all your support and love. We are overwhelmed by everyone's concern and help. If there was only a way we could repay each of you for your kindness....maybe birth announcements will have to do!
PLEASE, if you haven't signed our guestbook and have been following us since day 1 here in Boise, please do so. It is encouraging to know how many people have followed along in our adventure. Thanks in advance.

Casey

Today's Happenings

Friends, it's been nice to be home the last couple of days. We've been trying to accomplish a lot around the house. With the help of Lyn, Janelle's mom, we have been able to. Doing the normal things like laundry, pulling weeds, doing dishes, etc have all been on the list. Yesterday was a good day to just get settled in. Janelle went to the YMCA and took a class, she said many people wondered how we were doing so that was especially nice to know we'd been missed. I decided to drop in on my Group Strength class to suprise them and it was nice to see the welcoming arms. It was also good to be back "home" at the YMCA and it made both Janelle and I yearn to be back either teaching classes or taking classes soon. I hope to be back teaching in the next week or so (Those of you reading our updates in my group classes, don't expect anything too crazy...I feel so out of shape!!!).

Today seemed a little more stressful as we had a phone interview with one of the assistance groups that we have applied for. It was about a 45 minute interview and at the end it seemed to go well. We just have to send back some stuff they're sending us to sign and then wait usually for 4-6 months for an answer (the man on the phone said it could be sooner).

Hadley also had her first pediatric appointment with Dr. Copeland. I decided to stay home with Ella as it was her naptime during the meeting. Hadley is doing well! She weighed 7 pounds 8 ounces when we left the hospital and she weighed in at 7 pounds 14 ounces today. That's roughly 6 ounces in two days at home. All of her other measurements were above normal as well. We have our cardiologist appointment tomorrow at 10:45 in the morning. He may do an ECHO while we're there or just listen with a stethoscope.

That's about all for now. We had some friends come over and visit today so I'm putting in some pictures from today and yesterday. The first is of Hadley and Lucas, Andrea/Javier's new baby boy. He's about a week old and it was good to see them! Next is just some pics during the day of Hadley in her first dress. She's borrowed her big sister Ella's sunglasses to "chill" outside with Nana. Finally, Derek/Rosa and Quentin came over this evening and there's a couple pics of them. Thanks again friends for coming over.

Just a quick note about visiting. We love to have visitors and enjoy catching up with all of you. Please just give us a quick call to see when a good time is. It's hard when we have so many appointments now and we really want to dedicate our attention to our visitors while you're here. Also, if we don't ask, please remind us to tell you the "rules" for holding Hadley. She has to be "scooped" and can't be held under her arms at all. You can hold her like a football (as my brother did!!!) as long as her whole body is supported equally. We sometimes forget to give "the talk" to visitors so ask us beforehand if we forget!!! Thanks again and have a wonderful day.

Casey

Yesterday's Trip HOME - Portland to Boise

Friends, first of all...WE MADE IT!!! I'm sorry I didn't post anything yesterday after the trip, but it was a whirlwind of activity with getting the rental car back to Boise and spending as much time as possible with my girls. Overall, it was a great trip! We made a few stops here and there and it didn't seem like as long of a trip. Here's us getting ready to go at the hospital EARLY yesterday morning. This is the first time she got into her car seat.

And then we were off! Traffic wasn't too bad getting through Portland so we were soon on our way. Janelle's shopping but hit her as we were going past the Troutdale Outlet Stores however we had left so EARLY that they weren't even open yet (we got there at 8:30-9ish). So she'll just have to make up for that later!

Here was our next stop for a feeding (Janelle AND Hadley!!). We stopped at the hatchery to top Hadley off for a longer drive. Before that we went and saw "Herman the sturgeon." This HUGE sturgeon was 65 years old and 400+ pounds!!! It was amazing. Hadley liked it alot!

Back on the road, our next stop was a bathroom break at the great city of Arlington, Oregon. The gas station was nice and so were the people! We've learned from our experience that Hadley is a SNACKER when it comes to feeding. She'll eat a little here and a little there and then go to sleep for awhile. She has done great thus far in the trip too because she has been sleeping most of the way!

Lunch was had at the thriving metropolis of Pendleton, Oregon. It was nice to stop and have some food. No pictures from these last two stops because they would have been of a gas station and a Subway. Back on the road ASAP...we were making good time as my dad would say.

It seemed like a pretty quick jump over the Blue Mountains into Eastern Oregon, past La Grande (HI E.O.U!!!), and into Baker City. I shook off the urge to stop in La Grande and fill the rental car up because I just KNEW we could make it. Well, we did make it into Baker however the gas light went on outside just over the mountains between La Grande and Baker. I think we were coasting on fumes.

We planned to stay for awhile in Baker because my family lives there and the grandparents were missing our little Hadley. Here's some pictures. The first one is just walking into my parent's house where Grandpa, Grandma and Great Grandma Marie were waiting to see her! It was the first time Great Grandma Marie had seen Hadley and almost a week and a half since my parents had seen her. She was pretty much plugged into a bunch of stuff so they were not able to hold her. They got to hold her most of the time here!!! On a fun note, Hadley got to meet her 2nd cousing, Olivia, who was born on the same day as Hadley!!!!

After awhile, it was time to head home. We only had 2 hours left to drive and it went fast! Maybe it was us that just went fast, we couldn't wait to get home. Ella, Nana, Papa, Uncle Cody, and Aunt Lisa were all waiting at the house for us. I can't begin to describe how surreal it was to finally be driving down familiar roads and into our subdivision. Rounding that last corner to our house was amazing. Our neighbors and friends had helped us keep up our house/yard while we were gone and it looked great. Ella ran out screaming, "Mommy, Daddy! Mommy, Daddy!" She looked like such a big girl! I realized that we hadn't seen her for almost a week and a half at this point...she grew like crazy in that time. She is fully aware of Hadley and that she is a big sister. She wants to hold her all the time and doesn't like it very much when Hadley is sleeping. She wants her to be awake all the time. I can only smile and take in all of this.

So I look forward to updating you all as we continue on the journey here at home. Thanks again for all the support, love, and prayers. We still need all of those on a daily basis!!!

Casey

Less than 12 hours to go...

Friends, it has been a long road to today but we are less than 12 hours away from getting to take our Hadley home. Looking back, it has been a long, winding road. There have been many ups and downs in this section and we couldn't have made it without many people's love, prayers, support, and encouragement. It's not that the road is ending right now, we've just made it around some bumpy spots. There is more road to travel in the future, but we look forward to having a "rest" at home and living our "normal" lives. We've got a long drive ahead of us tomorrow and we're starting out early. Hadley should be released sometime between 6-8 am tomorrow and then we're on the road. I'm going to go get the rental car here in the next hour or so.
On a fun note, my brother Mark is down in Monmouth (sp?) right now for a football camp and he's decided to make the trek up to see Hadley (for the first time!) and help me get to the rent-a-car place tonight. I look forward to just hanging out with my bro for awhile. My uncle Bari should be up with Janelle and Hadley right now so expect a comment in the coming times!!! I'm writing, for the last time during this stay, from the Ronald McDonald House (or as Ella called it..."Old McDonald's House"). I just finished cleaning up our room and got the nod from the house manager that we could check out tomorrow early. We've got everything packed and ready to go.
As you probably just saw, I added a guestbook to the side of our page as well. Please sign it if you have checked up on us during this adventure. We would like to see all who have been with us. We will be updating you periodically as well when we get home! We love and adore all of you, thanks again for your support.

Casey

Janelle Speaks!

This is Janelle-- I finally pried Casey away from the computer to let you know my thoughts...
As Casey has let you know, Hadley is doing well! She acts like a normal baby girl with only a few special considerations. Everyone of the nurses that we have had have commented on how alert and "thoughtful" she looks. She is very curious and has really shown us her personality over the past week. I think she is going to follow in her big sister's footsteps by being a very active and determined little girl. I can't wait until she gets to meet all of her freinds and family! I am so excited to be home for a few weeks and to be a normal family again at least for a couple weeks!
The Cardiologists here are letting us know that there is a slim chance that Hadley will be able to continue as she is without any surgery-- the chances are much higher that she will undergo surgery again in a few weeks or perhaps a few months. The surgery will be another open heart surgery, this time to widen her pulmonary arteries that were stretched and narrowed during the last surgery. This one is much less intense than the first, with (hopefully) a shorter period of time on bipass and therefore a shorter recovery time. Our surgeon, Dr. Ungerleider, is optimistic about a potential of her "growing into" the narrowing that occurred in the last surgery-- I really want to hold on to that optimism-- however, no other doctor shares that optimism. So, for now Casey and I are choosing to accept the fact that surgery is going to happen and we are so excited that we get some time to breathe in our own home with both of our girls!! I am soooooo ready to be home right now!
I hope all of you know how much your encouraging words, letters, emails, phone calls, visits, financial help, and thoughts and prayers have inspired us. You were and continue to be a life-line for us when we have felt like the world was crashing around us. Words cannot describe the amount of gratitude we have for all of you. We hope you know that you made a difference in our lives and in the life of a beautiful 24- day old little girl. We are humbled by your kindness. Thank you! We will continue to keep you updated through this endeaver!

3 Days and Counting Down...

Happy Sunday to all of you, friends! Just another update, Hadley gained weight again last night. She didn't gain much but we just wanted her to gain PERIOD! The doctors on rounds this morning said that the last dose of antibiotics would be on Tuesday morning. So, now we're trying to still figure out which would be better - to drive or to fly. Flight will only take an hour, but there's all the hassle and fun stuff involved in getting to and through the airport with a 3 week old baby! The other option is a much longer 7+ hour drive back to Boise where we would have to probably stop every couple hours and feed Hadley (she's a slow eater!) Plus there is at least one mandatory stop in Baker City for a view of Grandma Shawna and Grandpa Glen's. This is just the tip of the iceberg in Janelle and my "pros and cons list" for each travel arrangement. Hadley is doing very well, she just had a minor breakdown because immediately after Janelle left for a minute she was instantly HUNGRY! I couldnt' get her to calm down...if only I had that apparatus from Meet the Fockers!!! (JUST KIDDING!) So, here we are, just waiting. Only this time it's an AMAZING type of wait, not like the other "waits" we've gone through in this adventure. We get to go home soon!
Janelle and I got a chance to look at our friend Ben Earwicker's website last night because we wanted to see pictures of the new arrival of Baby Lucas, our friends Andrea and Javier's new baby boy! He is a handsome young man!!! All I can say is "arranged marriage anyone???" We also looked back through our little picture album on there from when Hadley was in Boise...it's crazy. All I have to say is that Ben makes us really want to be home. The pictures he takes are amazing. If you want to check out any of his stuff, just click on the Ella link at the right of the page. You can see all our albums there and then link back into his website. Enough of the shameless pitch!!!
I hope that you all have a rested and happy Sunday. Thanks again for your tremendous support and we'll be home soon!!!!

Casey

Keep Eating!!!

It's true, friends, Hadley gained weight over the last 24 hours! YEAH!!! We, again, have some amazing nurses here and they told us about a special bottle and that we should try because of the way Hadley likes to breast feed (No, it's nothing like the apparatus in Meet the Fockers if that's what you're thinking!). Well, the night nurse Kathy tried it and she ate exactly what she was supposed to! So a quick thank you, again, to our amazing nurses. Anyways, today is going well. She is being taken off her final medication today and only is on her antibiotics now. We're looking at Tuesday or Wednesday to come home. The cardiologist on duty this weekend said she looked at the ECHO from yesterday and said that not much had changed. They are still keeping their eyes on a few aspects however. They will again talk about her in the Monday meeting where our cardiologist in Boise will be listening in. One of our decisions now is whether or not to drive or fly home. There are pros and cons to each situation.
On a side note, I have been wondering just how many people have been reading this blog and found a free counter at the right of this page that I am using now. It amazes me because I put it on late last night and at last count there were 50+ hits. Thank you to all who check on our blog (even numerous times/day). We appreciate the support and encouragement.

Casey

Eat Hadley...EAT!

Friends, as you can tell from my title, this is the last hurdle that Hadley has to get over before we can be discharged. She unfortunately has lost weight (minimally) over the last two days. She eats great during the day but at night just wants to SLEEP! The cardiologists ordered another ECHO for her today so this should be the last one, unless they come to another conclusion. Janelle and I were discouraged today because of the weight loss because we were so happy she ate like a champ yesterday. We just know that we don't want to stay any longer than we have to, as well as our concern for Ella. She keeps asking for her mommy and daddy. When she got on a little bike at Nana and Papa's yesterday they asked her where she was going and she said she was going home. It's hard for us because we don't want to affect Ella with this whole situation. We miss her terribly and we know she misses us. That's all for now, friends. Have a great day and as always we'll keep you updated.

Casey

More pictures

Hey friends, we just finished a nice visit with my Uncle Bari and he was nice enough to bring us dinner. Amazingly we couldn't have paid enough for the view that we got during our dinner. We sat outside the new Tram here at OHSU and there is a beautiful balcony area to sit on. AMAZING. I didn't have my camera then but I did have it throughout the day today. Hadley has been fully taken off of her fluids so we are trying to get all of her needed liquids from Janelle! This is great news as it is another step closer to home. She is eating like a "monster" as another of our favorite nurses Kathy has told us. We are so encouraged by her growth and recovery, even if we have to stay here another week. It's just another week for her to get bigger, stronger, and ready to head home! Without further ado, I want to include some pics from today.

Casey

One more week...

Friends, as I said yesterday, things can change rather quickly over here. After the meeting yesterday we were given an enthusiastic "yes, you can go home" from our doctors. Now, we just had to figure out HOW to get there. Hadley still has some time to finish her antibiotics so that has kept us here. They were hoping to get the stars aligned and allow us to travel back to finish this out as I said yesterday. This is how our return works: I like to describe it as our own little "axis of evil". There are three parties involved in the back transport: Doernbecher, St. Al's in Boise, and finally our insurance company. Our insurance isn't the best as we are on the student health plan for BSU since I was doing my student teaching this last semester. The hospitals are likely to approve a transfer, but they have to figure out if the insurance will pay for it. This is most likely a NO in this case since our insurance is pretty bad (let's be honest). The only ways we could get to go home is if St. Al's has a patient that they just happen to be transporting over here in the next week and we could "hitch" a ride back to Boise with them on their return trip. St. Al's could also pay the costs but it has to be in their benefit, meaning that Hadley has to stay long enough at St. Al's to make that payment worth their while. Since she only has about 7 days left of antibiotics, I don't think that's going to cover it. So it looks like we're here for another week or so. She might then be discharged directly from here and we can either rent a car and drive home or fly home with her (I'm not sure which would be more stressful). So you can look forward to another week of updates friends, thanks for following along in our footsteps in this adventure. As always, we are keeping our fingers crossed because things can change quickly here. Hadley is doing well, yet again today and is breastfeeding most of her meals. This time does give us a chance to work on these little things that will become bigger things once we are at home.

Casey

Day 12 - Update

Friends, it's been great updating you! I want to thank you for your un-ending support. In rounds this morning our cardiologist that saw Hadley pre-op, during most of her recovery, and for the first time in a week here came in. She utterred the one single 4-letter word which we have been hoping to hear. H-O-M-E. The cardiologists have a big meeting every Monday afternoon and will be discussing Hadley along with a bunch of other cases. Anyways, the thought is that if they can get enough support, Hadley could be transported with Janelle back to Boise to finish her recovery over in the NICU at St. Al's where we began this journey a long time ago. She still has 8 days left of the antibiotic treatment so that is their main concern. They are also keeping an eye on her pulmonary arteries that are stretched as well as a type of heartbeat that is "atypical" this far along her recovery path. But we heard those words and are hopeful once again, yet cautious because we know that the story can change in a matter of hours here. Thanks again for your support and I'll update again when I have more info on our potential homecoming.

Casey

Day 12 - Father's Day pics

Hey friends! Hadley, Janelle, and I are doing well today. We got over here just in time to help Hadley with her bath, something we have yet been able to help with. I've included some pics from this morning for all of you to see. She is now getting another PICC line put in as the other one she had from Boise clogged the other day.
A quick praise to our nurses and doctors because nobody had tried to flush that line because they knew it was clogged. In their concern for Hadley, they called an IV therapist (yes they do exist...I guess) to come in and look at it. He didn't feel comfortable with the line being in because of risk of infection. So they got the ok and pulled it out. Lucky for us, he was right. The line had clogged quite a ways up with dried that had been sitting in the line for awhile. The IV therapist told us that if they had flushed the line, it would have shoved all that , with possible bad infection, back into Hadley. I don't think he realized how important he was to us, but we told him over and over how thankful we were that he had come. A great intervention to say the least.
Anyways, she's getting that line in and Janelle and I are just going to go make ourselves busy because this can take awhile. It took almost 2 hours to do the one in Boise. So, it's Sunday, Father's Day and even though this isn't the most enjoyable place to be, I'm happy. I've got my 3 s and feel like the luckiest man alive. To be able to look into Hadley's eyes and see her beautiful face. To spend time with Ella just playing, coloring, and singing silly songs. And to know that I'm not in this alone with Janelle as I hold her hand whenever I get the chance. That's what it's all about.
A quick bit of information that I don't think I've told you before. Hadley tested positive the other day for a bacterial infection that was resistant to most of the antibiotics they had given her when they first found out she had one. So she is now on the "big guns" of antibiotics for this particular bacteria which runs for 14 days. They started that 14 day count on the 12th so we will be here for awhile. This gives us a great time to work on feeding, which Hadley is doing well with so far. She actually got all of one of her feedings directly from breast feeding. The nurses were impressed and we'll just keep trying (not me, but Janelle and Hadley!).
Casey

Day 11 - Recovery

Hey friends, hope that all is well with those who read this. Janelle and I had a rough morning/previous night yesterday because of being pretty tired and trying to deal with the probability of another potential surgery. Still no word yet, but they are continually monitoring Hadley. She had a great day yesterday! When we got here yesterday morning and got an update with Hadley, she was doing very well and the decided to remove the nose tubes. So now, with the exception of some IV's, pic lines, and her feeding tube, she is pretty normal looking. She is such a trooper and pretty much slept all day yesterday. I think she needed the rest. She looks good this morning as well and is just getting another feeding through the tube while Janelle is holding her! THEY ARE BOTH SO BEAUTIFUL! Now, we're trying to get her used to feeding by using a binky and some of Janelle's milk. She is responding better today than she has in awhile so we are hopeful. Have a great day friends, and we can't thank you enough for your support. I know I say it almost everytime but we wouldn't have the strength without your support.

Casey

Day 9/10 - Recovery

Friends, I'm sorry once again for not blogging yesterday. Needless to say we have been kinda worn out for the last couple of days. As I blogged before, Hadley has been moved over into the NICU for more care and recovery time. She has been well taken care of and we still feel hopeful. She had to deal with a lot the day she was moved. Her ventilator tube was removed, more tubes and stuff were taken off her little body. We were then informed that she would be moving "soon" to the NICU. After the hectic move, the nurse decided that we might try feeding her. IT was a hard time and we don't know if it was the stress of everything that happened that day or what but she didn't take very well to having a bottle. They wanted to try with a bottle first before putting her to breast to make sure she had everything down. Well, she didn't. Her throat was sore and I'm sure that she had been through just about all her little body could take at that point. She gagged and didn't do well. We had to resort to feeding her through the tube they had left in her nose for feeding purposes. Janelle and I were a little emotional at this point given all we had watched our baby go through that day and didn't take her rejection of the bottle well. We were saddened because we had seen so much improvement and now we felt as if we were stalled.
Yesterday was an equally long day because we did spend most of it in the room with Hadley. When she feeds, she tends to spit some up and choke. We are constantly concerned that when the nurse's head is turned, she'll choke. She seemed to do better yesterday through the feeding tube but she still spit some of it up. Needless to say there is a lot of ups and downs yet to go through.
Dr. Womack, Hadley's cardiologist from Boise, was in town yesterday and he helped put our mind at ease. HE told us he would be an advocate for our little Hadley and if he felt that it was needed to have another surgery then we would do it before we left here. He didn't want this black cloud over our heads as we went home wondering whether or not she was going to have to have surgery one day in the future. If there is any doubt, he would be an advocate for surgery.
Today, we get to spend some time with Ella because my parents so kindly came down to visit. They are going to be here for a couple of days and it's nice to see Ella and my family and have some more support. That's all I have for now, Hadley had an ECHO done this morning and we're expecting to hear from the doctors sometime this morning. We'll keep all of you updated.

Casey, Janelle, Ella, and Hadley

Day 8 - Quick Update

Hello all, just wanted to update you really quick. We have just been moved from the PICU back over to where Hadley began this journey here in Portland at the NICU. We are on the 12th floor in the "old" area that used to be Doernbecher and incredibly in the same room she began in. The transfer went well and she is acting like a normal baby! Probably won't be able to update as much because there isn't as much access to computers over in that building as there was near the PICU. Thanks again for your support and we appreciate all the comments.

Casey, Janelle, Ella, and Hadley

Day 8 - Recovery + pics

WOW, it has been a busy day already today friends! They were optimistic yesterday that she would be weaned off enough stuff to be able to get the ventilator out. Well, this morning one of the surgeons came in and got rid of the last two drains in her stomach. After they did rounds, they came back and removed her from the ventilator! She is breathing on her own, she still has the little tubes in her nose but nothing like what she had previously. We were both able to "hold" her. She can't be moved a ton right now but you'll see from the below pictures that we can partially pick her up off the bed and put our hands/arms under her and rock her. She can finally cry with sounds but her voice is very harsh as expected with the ventilator being down her throat for over a week now. They removed a lot of the stuff she was plugged into and now it seems that there is more Hadley. It is a sight for sore, tired eyes for us. Here's some beautiful pictures of our little Hadley! It is a blessing to see Hadley being herself. She has spunk!

Casey