Elise's first trip outside

So here is a short video of Elise going outside for the first time! It's not overly exciting, but it is now documented.

Our big journey home

Here is where our evening started last night in the room in the NICU. This is a room mainly used for families who are going to be discharged. It is a way for us to practice being at home. The nurses have no involvement in Elise's care, but they are right outside if we have any questions. It was good to do a test run before heading off on our own for real. This picture is of the room, and Jason and Elise on the bed. We bring her crib in from her unit room. She slept really well for us going down about 11pm, and sleeping until after 8am. We have to give her medicines at midnight and 4am, so we are busy throughout the night. Once she is eating better and the NG is removed, we will not have to give meds at night. Here is Elise with me in a bed for the first time. She thought it was pretty fun. It was different trying to figure out what to do with her next since we had free range in the room. So we just played with her on different surfaces. She thought it was a hoot. This was this afternoon. This is her to-go-home outfit given to her by my friend Tiffany (Aunt Tiffany to Elise). We were afraid she wouldn't fit in it, but it was a perfect fit. The yellow booties were a gift to Elise from my Godmother, Aunt Sue. We took a little parade through the unit before leaving so all of the nurses could say goodbye. We will miss all of you guys! Here are our first steps out the front door together.

Here we are filming and walking at the same time. I'm a multi-tasker. Wow! Heat and humidity. Two very new feelings for her. And a little sunlight in the eyes. You can see on top of her head where she is losing all her baby hair. She still has a lot in the back and it is still red. But she is definitely balding.

It was a major trick getting everything to fit in the car. It's a good thing I took as much home as I did earlier this week. We were really packed in. Elise fell asleep about 30 minutes into the drive. But only slept for about 20 minutes before waking again. Sometimes it was partly cloudy. Other times it was partly sunny. We arrived home to a welcome sign and balloons. Awe home! And inside found a few welcome home gifts from Grandma and Grandpa Paul. Elise loved the balloons. Once we got home we went straight to her room and put her in her crib. She loved it! She just kept stroking the pillow, it was given to her by my Aunt Mary. She was so happy. And she couldn't take her eyes off the ceiling fan in her room either. Here is her meeting Mable for the first time. Mable was SO excited! Elise just looked at her and laughed. Silly puppy. And here is her first diaper change at home on the changing table I set up in the laundry room. I have been waiting all summer to use this thing! We were worried she would be too long by the

time she came home. But it looks as though we still have plenty of room. Elise missed several naps today, because there were so many new things to see. She couldn't get over all the different rooms in the house. It is so great to be home and feel like a family. The dogs seem ok with her. Mable wasn't sure what to do about sitting on my lap when I was feeding her, but I assured Mable it was ok. Jason and I have a lot of work ahead of us with organizing and finding places for all her medicine and oxygen supplies. You should have seen our kitchen this evening as we tried to get it all together. What a mess. She went to sleep like she has always lived here tonight, and hopefully will sleep well. We are so excited to get our life started again. It is an odd feeling to think that I don't have to go in to the hospital tomorrow to take care of her. I just have to go into the next room. Oh happy days! Remember just give us a call or text if you want to drop by and meet her. If we don't answer then we are probably right in the middle of something and will call you back as soon as we get a chance. Love you all. Kristin

Guess What?!

After 4 very long months (123 days) we are finally excited to announce ELISE IS GOING HOME FRIDAY! And I mean home, not to another hospital. We found out last week that they wanted to send us home, but didn't want to announce it until today, just in case something happened that would cause a delay. I cannot express how excited we are to FINALLY take our baby home and be a real family. She will go home on oxygen and have some NG feedings, mainly at night. She will also have the continuous IV infusion. We will continue to increase her Flolan from home, and start weaning her oxygen as well. Home health came to the house today to deliver the oxygen, pulse ox machine, food pump for the night NG feedings, and other supplies. Thursday night Jason and I get to spend the night with Elise in a special room in the NICU that is set up to mimic being at home with her. We will do everything as if we were at home with the nurses close by in case we have any questions. Then Friday we will head home! It feels so good to be typing that sentence and telling family. We have gone through so many emotions this summer, some more than once. It is nice to finally have this new emotion of excitement and joy. My mom and I spent several hours Monday night cleaning the house getting it ready for Elise. And Jason and I already have so much planned to do with Elise. We have a lot of time to make up for, and so much we want to show her. We are going to get video of her coming out of the hospital Friday, and post it hopefully Friday night. And we will still post Monday, Wednesday, and Friday next week. We will eventually post less when things start to settle down, but she has a lot to experience once she gets home, and I know that all of you will want to watch her experience it all. Jason and I cannot thank all of you enough for all the support you guys have given us through emails, texts, comments on the blog, phone calls, care packages, gifts, money, cards, and hugs. And thank you to everyone that spread her story to other people who increased the number of people pulling for her. We have had overwhelming support from SO many people, this has been such an experience. We never thought anything like this would happen to us. Elise still has a long road ahead of her and we hope she will continue to improve. I know that many of you want to meet her, and we want you to meet her too. Please feel free to call Jason or I to visit, and we will let you know when a good time would be. This fall we will start restricting visits due to the cold and flu season. The less she's exposed to, the smaller chance she will have to catch something. Even a minor cold will put her back in Children's hospital or even kill her. Jason and I would also like to extend a huge thank you to all the hospital staff at St. John's and Children's. Everyone we have come in contact with has been so wonderful. Every staff member goes out of there way to make us comfortable, and caters to any need we have, no matter how minor. We have developed some close relationships with many of the nurses here, and I value each one. I will sign off tonight with butterflies in my stomach as our big day grows closer. I'm sure I'll cry again as we leave the hospital, but they will be tears of joy and excitement. I love you all, Kristin

This is Elise during her car seat check. It is a requirement for all NICU babies before they can go home. She had to stay in it for the time it would take to get home, which is 3 hours. She slept the whole time after an initial crying fit. It was weird to see her in it, we wanted to just pick her up in it and take her home.

Here's Elise during some tummy time action. She is tolerating it better, only crying towards the end. And she is actually starting to pick her head up using her arms and not her back like before. Here are some picks of her on her playmat. She was pretty happy, then fell asleep.

Elise had a good weekend. She is almost taking her full bottles during the day. Now they aren't the full amount of milk she needs for the day, but we are giving the rest of that through the NG at night. We are trying to build her back up to what she should be taking, then we will be able to remove the NG tube. They tried to decrease her Zofran (the medicine that keeps her tummy from being upset) but she started to not tolerate her feeds again, and her vomiting increased. So she is back on it every 4 hours before meals. The doctors increased her Flolan today up to 21, and will continue to increase it every Monday and Thursday. She is starting to mimic sounds when you talk to her. It was pretty funny Friday night I had her trying to mimic a laugh, and she was doing a pretty good job. And the next day she was trying to do it again, but couldn't quite remember how. Jason and I are in Springfield now, and will return Wed. afternoon. So, we will post then from St. Louis. Until then, Kristin