Sorry I don't have a picture this week. Elise got sick again Thursday night and ended up in the PICU (pediatric ICU) Friday night. She has had a few rough days with fevers spiking up to 105.6. She has also had some respiratory issues with the higher temps and is back on oxygen. We have been able to stay in springfield to treat this line infection, but have been in close contact with her doctors in STL over the phone. Hopefully we will be able to treat this infection again without pulling the central line. This time she had a different bacteria in the line, that is a little nastier, and that's why she is more ill this time. We will hopefully be home later this week, where I will continue to treat her infection with IV antibiotics at home. We are asking for no visitors at this time, to help decrease her exposure to anything else while her body is under such stress fighting this infection. We will post again Monday if everything goes well this week. Love you all, Kristin.

Happy St. Patrick's day to everyone! We are all doing great and enjoying our spring weather. Elise continues to improve. She is still tolerating her Flolan level not being increased each week. And is still getting her oxygen at night by blow-by, with no oxygen during the day. Since we have not been increasing the Flolan, she has been able to come off the Zofran medicine for nausea. So now she is only getting Viagra three times a day. We have also been able to increase her tube feedings up to 230ml, which is almost 8 ounces three times a day. And her vomiting is at an all time low. We took her to two more restaurants and she loves it. Tonight we went out with my parents and it happened to be kids night. So we ordered Elise her first kids meal at a restaurant. We ordered her mac-n-cheese and applesauce. She played with the mac, and we tried to get her to eat some of the applesauce, but she liked our french fries better. It has been so great seeing her continue to improve. We are still cautious about keeping her well, since the cold and flu season isn't over yet. But are excited about showing her the world. I hope you all have a great week. I'll post again next Monday. Love, Kristin Oh, check out the two videos below!

This is the video to the pictures last week of Elise in her bassinet.

This is Elise's latest dance move. She really enjoys doing it in her highchair, because she can bounce her head off the sides.

Another 4 generation photo for the record books.

These next 5 are of her playing her the bassinet that was handed down in Jason's family that I had refurbished by an antique dealer. Elise never got to sleep in it.

Another good week for the record books. Elise remains off oxygen during the day, and now gets blow-by oxygen at night. Which means she does not wear a nasal cannula, but has the oxygen tube directed towards her face while she sleeps. It is like having a garden hose turned on spraying you in the face. She continues to tolerate bigger feeds during the day which has enabled us to decrease her night feeds. She got to go with Jason, me and the dogs to our favorite state park on Friday. It was her first hiking trip and she absolutely LOVED IT! Jason and I both work a lot this week, so we don't have any big plans. I'll post again on Monday, Love you all. Kristin

10 months old

This is Elise and Gma and Gpa Paul's house. She's pretty proud of herself.

This is a gigantic unicorn balloon that my brother gave me for my birthday in Jan. Elise loves balloons.

Here she is practicing standing up in her exer-saucer.

So this last week has been filled with exciting events for Elise. As you can see, she was again able to come off oxygen during the day. She still has to wear it at night, because some nights her oxygen saturation decreases for an unknown reason. But she is so used to wearing it, she doesn't mind it being on when she sleeps. It is really nice not having her connected to an oxygen tank. It was like having her on a limited leash. Now we feel like we can go anywhere! In fact she went with my Mom and me to Kohl's for a quick shopping trip today. We came out empty handed though, they didn't have her size. But she loved looking at everything around her.

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She is also, as you can see by the pictures and video, starting to stand with assistance. At first she didn't like it because it was hard work. And anything that has to do with hard work, whether tummy time, crawling, or eating, Elise hates doing. But now she is starting to enjoy a different view on the world around her. We are still working on crawling. She will stay on her hands and knees in the crawl position, but can't figure out how to move. It's a work in progress.

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We don't have any big plans for this week. I'll post again on Monday. Love you all, Kristin

This is Elise in her STL cardinals hat. And no that ins't a toothpick in her mouth. It is paper. She loves to chew on paper.

This was yesterday am, she is really getting good at standing.

On again, off again

Elise has been doing well since the cath. She's been on and off the oxygen, and we're enjoying the off. She's enjoying it also, as you can see in this picture. Normally while wearing the nasal cannula we have to bundle her arms down with a blanket to keep her from pulling the cannula off, but without being bundled, she was free to lie on her side. It's a simple thing, but we haven't got to see her do it much, and it's really cute. Love you all, Jason

Cardiac Cath, part 2

Elise likes sitting more upright in her new car seat. Notice the no oxygen!

Here is her travel "crib" in the hotel the night before her cath. She slept surprisingly well in it.

Saying "good-bye" before going to the cath lab.

This is after the cath upon her returning to her room. She had to lay flat for 4 hours!

Elise's day of cardiac cath didn't go smoothly, but the results really made up for it. Compared to the first cath she had in August, her average pulmonary pressures were about half. This means that she has had a significant improvement from development of her pulmonary vessels and dilation with the Flolan. We don't know how much of the improvement in her pulmonary pressures are due to the Flolan, but we think this is encouraging as to the possibility of her coming off it long-term (years). Babies develop as many as 15 times the air sacs from birth to age 18 months. This is like dropping the pressure in a water hose by poking several holes in it. We hope that the improvement is steady and we can see another remarkable change in future catheterizations. She was scheduled to be the first case, but it ended up being about 5pm when she was cathed. So we drove home late and got home about 1. We are glad to get her back home, we're settling her in, and trying her off oxygen again. Love you all,

Jason

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.So that's Jason's version of the trip and here's mine. We have been able to keep her off oxygen since Monday, so our trip was a lot easier. Although we still brought all our oxygen just in case. Her appts on Tues went really well. The surgeon was happy with how her Gtube looked and won't need to see us again unless we have problems. Next was her cardiology pre-admit appt where they did an EKG and chest xray. They where pretty stoked to see her off oxygen. When they told us we were being moved from the first case of the day to noon, we weren't too happy, but we understood there are sick babies needing the procedure more than Elise. We then took Elise out to lunch at our favorite pizza place in STL, and then settled into our hotel. My friend Leslie gave us that travel crib in the picture, and this was the first time we have been able to use it. And Elise LOVED it. Jason kept calling it her box, but she liked snuggling up in it. Our hotel had an Applebee's restaurant in it, so we met our friends Zac and Miranda for dinner. Elise go to sit in a highchair, and was eavesdropping on everyone's conversation around us. She was flirting with every table around us, really putting on a show. It was our first overnight trip out as a family.

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.We were able to piddle around our room Wed a.m. since we didn't have to be at the hospital until 11:30, which was nice. They took Elise into the cath lab at 12:50 and told us they would update us again at 2:30. Well at 2:20 the doctor came in to tell us that they weren't able to sedate Elise enough with IV medicines to do the procedure and that she has been pretty upset, which caused her oxygen saturation to drop, and that they were going to have to get anesthesia involved now. So for 1 1/2 hours Elise had been back there upset, and the whole time we thought she was almost done. This made Jason and I very nervous, and we discussed with the doctors calling off the whole procedure and coming back another day. But they reassured us that the procedure was very necessary, and that she was fine and had been sleeping in a nurse's arms for awhile.

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So they ended up finally starting her procedure at 3pm and had to intubate her. We didn't get to see her until 6:30pm when she came up from recovery. They initially wanted us to stay the night since she had to stay flat for 4 hours and that put us at 9:15pm, but she was very alert and acting like herself, so they ok'd for us to go home. So we ended up getting in after 1am, but all of us were happy to be home. She did have to come home on some oxygen, but we were able to take her off of it this afternoon.

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.The results of the cath were better than the doctors had expected. I'll try to make it simple. Back in august her main pressures were 50, this time they were 25. Which is the high side of normal for someone her age. The doctor used the words, "remarkably better." It was great to hear him have such good news for us. So now the plan is to keep her flolan at the current dose and stop increasing each week. This will essentially let her grow out of today's dose, and we'll see if her oxygen need goes up because of it. If not, then he said we could consider a slow wean off the flolan that would take quite a long time. So like Jason said, good news in the end. I'll post again on Monday, hope you all have a great week. I know we are. Love you all, Kristin

Happy Valentines Week!

These next 5 photos are of this evening. She has been tolerating less oxygen lately, and I have been able to take her off oxygen completely during her naps. This is after her afternoon nap today. We are hoping that this will continue, and we will be able to completely take her off someday soon.

Pretty in pink on valentines day. These next few are of her at Grandma Jane's on Saturday. They watched her while Jason and I had a Valentines day lunch at his work.

Things have been going well this week since I posted on Wed. The doctors in STL are ok with her getting her heart cath on Wed, if they like how she looks tomorrow. So, the three of us are heading to STL first thing tomorrow for two doctors appts. One with her surgeons to look at her G-tube, and the other with her cardiologists for pre-admit stuff for Wed. The three if us will then spend the night in a hotel, and have Elise back at the hospital bright and early Wed am for her cath. She is first on the schedule, so we won't have to wait around all day for her to get done. If all goes well, we will get to go home that afternoon. The results won't change any course of treatment at this time, but will show us how much her pressures have decreased since her last cath in August. This will be Elise's first stay in a hotel, and the first time the three of us have stayed together away from home. I will post Wed night once we get home and settled to update you on her results unless something goes wrong and we have to stay in the hospital for a few days. Wish us luck. Love you all.

Kristin

Elise feeling better

This is Elise yesterday. As you can see she is feeling much better. She is doing her impression of a motor boat, and trying her best to get the toy all the way in her mouth.

Talking after card

This is Elise in her High chair. She loves musical cards, and when you see the high chair moving, that's her feet dancing.

Orange face

So this is the video to the picture with the oranges all over her face. You can blame Jason for the shaky camera work.

Elise's blood cultures came back positive for staph again, which is what she had in January. It is treatable with the I.V. antibiotic we have been giving at home since Monday. So, her doctors in STL want to treat with the antibiotic for 10 days. Yesterday was her first day without fever! And still none today. We re-drew labs again last night, and should hear the results sometime today for some of them, but the cultures will take 24-48 hours. I did not take her in to her PCP today since I was able to draw the labs from home and she is feeling better. And the next question is if she will still get her heart cath that she is scheduled for next week. The cardiologists are all discussing and will get back with us. If I had to guess, I would say they will want us to come up as scheduled so they can check her out, and then decide whether to go ahead with the procedure, or reschedule again. I still have those videos I'll post later this week. I was able to pick up shifts at work yesterday, today, and tomorrow, so I'm a little busy with everything. I'll post again on Monday. Love you all, Kristin

We went for a walk Saturday with Great Grandma Mary at Springfield lake. She was our photographer for the day. This is Elise ready to go.

Elise is really good at blinking right when the picture is taken.

Here we are ready to go with the kids in the back, and Elise in the front.

She's trying to help me walk Lulu. You can see the tree damage from the last two ice storms behind us.

Don't look at the horrific look on my face, just focus on her adorable one.

And of course I had to post one of my new puppy and, as always, adorable Mable. Isn't Amos handsome with his crooked ear. He is doing really well, even better than I thought he would do. The girls are still warming up to him, but Elise thinks he's a hoot. She loves to laugh at him when he walks by.

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Anyway, so last week went well. But (you know it's never good when you see the word but), Elise came down with a fever again Sunday am. We were packed and ready to head out the door to STL when her doctors told us to stay here. We got some labs drawn here, and were able to start her on IV antibiotics here at home. She's getting the same treatment she would in the hospital. So we will wait 24-48 hours for the results of the blood cultures to see if it is her central line that is infected again, or if it is something else. Meanwhile, we will be giving her the IV antibiotics every 8 hours and treating fevers with Motrin and Tylenol. She has been feeling pretty crappy, but tries really hard to be her happy self. It is so hard to watch her be uncomfortable; you just wish that you could take the pain for her. We will draw labs again Wednesday for recheck, if all goes well between now and then. I think I have two videos that I took of her this weekend that I'll post as I get time later this week. I'll post again for sure Monday, and sooner if anything important happens. Love you all, Kristin

New Family Addition

You can see how Elise has given herself an orange facial.

All ready for a walk to the park.

Quite extensive application of orange to the face is necessary for the full desired effect.

Kristin's birthday present. Yes, another dog. But when you do such a great job as Kristin, you get what you want.

His name is Amos, and he is a nearly two-year old, blue-brindle greyhound. The color combination is pretty rare and he's really handsome. He never raced, for whatever reason, and you can see he is fitting in fairly well so far.

This is Jason posting, if you haven't figured out yet. Elise enjoyed her first Super Bowl last night, and like a drunk old man, wouldn't take off her Cowboy's shirt despite their failure to make the playoffs. I have had a cold this last week and we are thankful that Elise has stayed healthy. In fact, her oxygen need has gone down to about 300 ml. She is also showing small improvement in getting food into her mouth and is rarely vomiting. We had some good weather this weekend so we to Elise and the pups on a walk to the park down the street. Hope you all are doing well, love you,

Jason

9 months old

She just keeps getting cuter everyday!

We had a nice day last week and took Elise out on a walk. She loves going places. It amazes me everyday how cute she is. And I know I'm biased, but damn she's cute. She is doing really well with the vomiting. We have been able to decrease her Zofran (helps stop nausea/vomiting) from 4 times a day to twice a day. And her oxygen is back down to right around 1/2 liter. Her surgical sights are healing nicely, and she doesn't seem to be bothered by the mickey button. My 31st birthday is tomorrow and we were going to go out tonight and tomorrow night for dinner, but mother nature has given an ice storm tonight, so those plans are on hold for now. Elise is still doing the same with her eating. We are trying fruit juice in the bottle instead of milk now hoping she will find something she likes. She is confused at why there isn't milk in the bottle, but still spits it out as she did the milk. She is scheduled to get her RSV vaccine tomorrow, weather permitting. Other than that, a pretty quiet week ahead for us. I'll post again next Monday. Love you all, Kristin Oh yeah, don't forget to check below for the videos I posted last week, and a new one for tonight.