A week overdue

Ok, so these pictures are way backwards. So, start at the bottom and go up. This was a book that Leslie had personally made for Elise that has flower fairies, each representing a letter in her first and middle name. It is really cute. This was the night of her birthday party. She was pretty tired from all the partying.

She LOVED Joel!

And of course her Aunt Eva too.

Nice socks Mom.

Here she's wearing a new Baby outfit from Leslie and Joel.

Here she is about to dig into the cake.

No I didn't pay anyone to make this cake. I did it myself, looks professional I know. My Mom made me the same cake on my first birthday.

Ready for cake!

She loves the picture of the baby on Mom's phone.

She had a first birthday hat from Uncle Brad, and a tiara from Aunt Eva.

The hat has a candle on top.

Good french fry!

Just hanging out with Great Grandma Eleanor.

Mmmm paper.

This is her new surprised look. She does it all the time now.

What a week! It feels like it has been two weeks! Everything started last Monday after I dropped off my cousins Leslie and her husband Joel at the airport. We had a fabulous weekend as you can see by the pictures. Her party was so fun, and she loved having everyone with her. It was Monday afternoon and I went to pick her up like I do everyday, and her IV broke in two! Yes, completely broke in half. And her Flolan has a half life of only minutes. Which meant that we had to get another IV in her ASAP. So we jumped in the car a drove like a banshee to the hospital where they were able to get an IV in her, then we headed to STL. They weren't sure if they would be able to repair it again like last time, so they admitted us overnight to the hospital. But we went home the next am, since they were able to fix it. Wed. we headed to Oklahoma City with our friend Jon to start looking for a house to rent. Two days of searching finally lead us to a great house. And this whole time Elise spent the night with her Grandma and Grandpa for the first time. And they all did great. We got back late Thursday night, and I went to work for the next three days leaving Jason at home with Elise. He then left Sunday while I was at work to head to STL for the next two months. Phew! But wait, there's more. We have been able to successfully wean Elise down on her Flolan low enough that she can be turned off in the hospital. But, I found out today that they want to do that in cath lab, and there aren't any openings this week. They weren't expecting her to be down this far for another 2 weeks. But she just did so well coming down this week, that we just kept going. So I am waiting to hear from the scheduling lady in STL to find out when we can get up there and hopefully get her off Flolan and get this damn IV out of her! AND, we found out today that Jason won't be going to OKC next year. That's an even longer story that I'll save you all from. And fill you in later, once we know if we will be staying in Spfd, or going somewhere else. Other than that, things are going well. Elise is cutting some new teeth, and is starting to crawl and pull herself up. I uploaded several videos below, I hope you enjoy them. Sorry I didn't post again last week like I said I would. I kinda got a little busy. Love you all. Kristin

Falling backwards

So this is Elise's favorite new game. She loves to fall backwards. But she has learned the hard way, there isn't always a soft pillow behind her.

Falling on bed

This is another video of Elise's new favorite game. I just love her laugh.

Happy Birthday To You!

Here she is on the table with her cake while we sing happy birthday. She was starting to get a little tired of all the attention.

Opening Bday card

Here she is at her birthday party opening a card from Aunt Eva and Uncle Rick.

Sorry we didn't post last night. We ended up in STL due to Elise's central line breaking again. We are back home today and everything is going great. I'll post more later tonight and add pictures of her weekend.

Happy 1st year

I had several different ideas for this week's blog. I thought about doing a type of year in review with pictures, but that would have been a lot of pictures. I thought about doing a birthday photo shoot, but she's had plenty of those lately. Then my Mom suggested a picture from each month. And I thought, perfect. So I picked my favorite photos of Elise through out her first year of life, and what a year it has been. She made a grand entrance waiting until 12:15 a.m on April 29th to meet us. Bright red hair and big feet. But no cry came from her, which started it all......

This was her first-day-of-life birthday. The doctors where surprised when she made it to day #2......

This is month #1. We were amazed she made it this far. We thought the worst was behind us, little did we know.....

Birthday #2 gave us her first smile.

By her 3th month birthday she was getting even cuter.

For her 4th month birthday, we were able to take her home, and she got to lay in her own crib for the first time!

She was really packing on the pounds by her 5th month birthday.

On her 6th month birthday, we found out that orange is not her best color.

She really started enjoying life around 7 months. Just happy all the time!

At 8 months she could fully sit up by herself, and began to follow and pet Mable.

By 9 months she had lost her NG tube and was requiring less oxygen.

And by ten months, no oxygen needed, freedom!

11 months gave us a close call with another line infection. But she remained a happy baby through it all.

So there you have it. Some of my favorite pictures of my favorite girl. It was difficult to look back at all the pictures. So many different emotions came flooding back. I haven't really sat down and looked at ALL the pictures we took. There are so many. And it's almost nauseating to go through all of them and think about everything Elise has gone through to make it to today. I've had several people ask me if the past year flew by. And honestly I can say, no, it didn't. This past year was the most heart-wrenching, joyous, upsetting, exhilarating, scary, horrible, wonderful year of our life. I still can't believe that Elise is still with us today. And I don't care if you want to thank God, or thank her doctors and nurses, or heck, even thank Elise for getting through this year. I'm just glad we are at this huge milestone for her to celebrate. It is truly an odd emotion I go through everyday feeling anxious about the impending doom of another line infection or her just getting sick, while feeling so much joy from seeing her improve everyday. I try to soak up as much of her good days, because I know bad days are looming ahead no matter what I do.

.

.

.

I again want to thank everyone who has followed our journey whether it was from day one of the pregnancy, day one of her life, or even if you just found out last week. I've never been able to keep a diary or journal. I've never been one for writing anything really. So, thank you all for staying with me each week. Knowing that you guys are with me has really helped me through this last year. I hope most of you continue to follow Elise's story through this next year. We have a lot to get through in this next year. And as much as I wish it will be smooth, I know there will be bumps in the road.

.

.

.

I hope you all have a great week. Elise's God mommy, Leslie, is coming into town this weekend with her husband Joel. They are going to get to meet Elise officially for the first time. We are SO excited. So, I should have some great pictures for next weeks blog. I love you all. Kristin

I know Easter was last week, but I didn’t get these pictures until this week.

This is Elise with her Easter cookie. Yummy!

Here we are on Easter. Elise is wearing a hand-made sweater that was made by her Godmother Leslie's Grandma Joan.

Here she is surrounded by Easter candy. You can see the sweater better in this picture.

Well, we had another great week! My friend Tiffany came in town Wed and has been here throughout the weekend. Jason was home again this weekend, and is still enjoying his rotation in KC. And we are planning a trip to Silver Dollar City later this week with Gma and Gpa Paul. We are still weaning her Flolan each week and she is tolerating it very well. She is doing a lot of self “feeding” which her speech therapist says is very good. She spits out most of what she puts in, but it is good that she is accepting different foods in her mouth. I posted two videos below, so check them out. Have a great week! Love you all, Kristin

First time in a swing

This was last Thursday when Mom and I took her to the park. She got to swing for the first time! She really liked it.

Bunny Hop

Ok, Aunt Kathy. Here's your video.

Happy Easter!

Sorry about the late post, I've been at work. I'm happy to report it was a boring week! Elise has been doing really well this last week. We are still decreasing her Flolan each week and she is maintaining her oxygen saturation amazingly well. The pictures above are from Easter weekend. We had a cold rainy Sunday, so these were taken Saturday evening in the front of our house. The bonnet she is wearing was mine as an infant, and the dress was a hand-me-down. I have pictures of the dress she wore Sunday, but they aren't on my computer, so I'll have those next week. But in those she is wearing a hand-made sweater that was worn by her Godmother, Leslie, when she was an infant. Elise also got to meet her first baby this weekend too. My best friend from grade school has a son that is one month younger than Elise, and they were able to meet for the first time this weekend. The pictures and video from that are below, so check those out too. Jason is really liking the residency in Kansas City that he is visiting. He is still there during the week for the next two weeks, and then will move on to St. Louis for the next 2 months. Our house was listed on the market April 1st, and we have had NO ONE come see it. A little disheartening, but we still have time. I hope you all enjoy your week, I'll post again next Monday.

Love you all, Kristin

Happy Easter video

Here's the behind the scenes video of the photo shoot.

Meeting Jack

This is when Jack first came over. They were really checking each other out. And yes, that's me with the dark hair and bangs. My hair isn't blond anymore, it's gotten darker with age.

Jack gives Elise a wet willy

If you'll notice Jack slobbering on his fingers before he attempts to stick them in her ear.

What a week!

She really liked her new book from Great Grandma Mary.

Jason and Elise posing for a pic at Ruby Tuesday's last week.

Here she is waving "hi!"

This is a new hiking backpack we got last week. She LOVES it! It seems really comfortable for her, and Jason said it isn't too bad for him either.

Let's just say I'm ready for a boring week. Jason headed off to K.C. Tuesday and I thought I would just cruise through the rest of the week until he returned home this weekend. Well, Elise had other plans. I woke up Wed. am to find her sleeper soaked in her blood. Her central line had split open and was leaking! I started making phone calls immediately to her doctors in STL and her pediatrician here in Spfd, the ER and the PICU. STL said to go to the ER here and they would have someone in the hospital who would look at it and decide if it could be fixed. But everyone I talked to at the hospital here didn't know who that would be. I ended up taking her up to the PICU where the general pediatric surgeon met us and told me due to where it was broken he couldn't fix it, and it would have to be pulled and replaced. So the nurses in the unit, luckily, were able to get and IV in Elise's foot so we could change the Flolan over to a secure line, and I called Mom, and we headed to STL not knowing what was going to happen. We arrived in the ER and a "IV nurse" walks in with a repair kit and fixes the line like it was nothing. She said this happens a lot with these certain lines and that they have to fix them almost on a daily basis. What a relief! Because changing out the line isn't as simple as it sounds. It requires Elise to be admitted to the hospital and have another surgical procedure. But our excitement was quickly shut down when one of the lumens (ports) was clotted. Now stick with me you non-medical people. See, Elise's line has two access ports, or lumens. It has this because her Flolan cannot be mixed with any other solution and can't be stopped. So having the second lumen allows us to draw blood without stopping the Flolan and give a second IV drug if necassary. Like the IV antibiotics she gets when she gets a line infection. Where was I...... oh yeah the clotted lumen. So, they injected her clotted port with a special medicine that breaks up clots. We waited 2 hours to let it work, and then the IV nurse came back to try to access the line but was unable to. So they did a second injection, we waited an additional hour, and again no luck. It's now almost 9pm and they have to decide whether to admit Elise and continue to try and get the clot out. Or send us home and have me attempt to access the line myself. Longer story short, they decided to send us home and have me attempt to access the line. Mom and I finally left STL at 10:30pm arriving in Spfd at 1:30am. WHAT A DAY!! I was never able to access the second port so now she has a "dead port." Which means if/when she gets another line infection she will have to have the whole line pulled and replaced. Nothing like having something to look forward to, huh.

.

.

Other than that, the rest of the week went well. Jason came home Friday afternoon, we had a great weekend, and he left this evening to go back. So like I said at the beginning, I'm hoping for a boring week. I'll post again next Monday. Love you all. Kristin .

Oh, and check out the two videos below!

Catch with Dad

Jason was able to get Elise to play catch the other day. We actually have 4 videos of them playing catch throughout the evening, but this is the best one. This might even be her cutest video to date.

Worn out Baby

This is what happens when Jason plays catch for too long with Elise. He wore her out! I don't think she has ever fallen asleep like that before.

Chocolate chip cookies can be messy.

Thank you all for having patience and waiting for me to blog today. We have had several phone calls this week from people who were worried about Elise and couldn't wait. And that's fine. I've been very busy all week with work and Elise's IV meds that she has been getting at home. I even have to leave work to come home and administer her meds. We came home from the hospital Tuesday around 2pm, and were able to take her off oxygen by Thursday. She is back to needing it only at night now. We still have another week of giving her IV antibiotics at home, but she seems to be feeling MUCH better. This infection was a lot worse than her last two. Her doctors in STL want us to start decreasing her Flolan each week now because she seems to be getting these line infections more frequently than before. Originally they wanted us to wait until the end of May to begin the wean, but after seeing how sick she got with this last infection, they feel it would be best to start sooner. So now each week, as she tolerates it, we will decrease her Flolan by one nanogram. And if all goes well, she will be due for her next heart cath around August, again if all goes well. Unfortunately she will have to be started on another medicine that works like Flolan, but is given in the oral form instead of the IV form. Flolan is given to patients that have severe pulmonary hypertension, and Elise's last heart cath shows us that she could tolerate the change in medicines.

.

.

On another note, Jason leaves to start his month long rotation in Kansas City. My Mom is going to continue to help me babysit, and Jason will come home on the weekends.

.

.

We also found out recently that we will be moving to Oklahoma City this summer for Jason to start a year long internship. It's kinda confusing when we try to explain why it's only a year. But is all comes back to when he took his leave of absence when Elise was in the NICU. So we will put our house up for sale on April 1st, and hope it sells quickly. If you know of anyone looking to buy a house, send 'em our way.

.

I hope you all have a great week. I will post again next Monday. Be sure you watch the videos below. Love you all, Kristin

Keyboard madness

This is a keyboard that my brother Brad gave her. She loves rocking out with it.

And this is what happens when the music stops.....or maybe she was as tired of it as we were.