Update on Jolianne

The doctors made their rounds and they think that Jolianne may be sick. They are doing blood work on her now. They said that it could take 24 to 48 hours to come back. If she is sick we will limit the opening of her isolette to Doctors and Nurses only. We hope that she isn't sick, but it is flu season and very easy to transfer germs. The doctors also told us today that the test for DiGeorge came back normal. We are very glad to hear the good news. We will continue to focus to getting Jo Jo ready for her surgery. Please keep her in your prayers.
Love,
Jeremy and Crystal

Mema and Jolianne

Mema and Jolianne

I wanted to post this picture because I thought it was so sweet. My mom holding her first granddaughter for the first time. Don't they look so cute together!!!! Jolianne really enjoyed her Mema singing "You Are My Sunshine".

Still not tolerating the supplements

Little Tater Jo taking a nap.

Jo Jo taking her pacifier.

Hello everyone,

I went to see Jolianne yesterday and she was awake the entire time I was there. It was so good to see her so alert. Andy and I both read a few stories to her from our Fairy Tale book. She really seemed to like it. While I was there she did get sick and she held her breath for about 15 seconds. It was really scary to see her do that. She did catch her breath again with a little stimulation and went back to breathing like normal. When I called to check on her this morning they told me that she got sick three times last night. She is back on her supplements and I wonder if that is still making her sick. They told us the other day that with the feeding tube in her intestines that it should prevent her throwing up. I am waiting on them to do rounds so that we can find out what the doctors say about her getting sick again. She still weighs 4 1/2 lbs so she is not gaining weight like we want her to. We will keep praying for her and her doctors and nurses so that we can find a resolution to what is causing her spit up her feedings.

Back to Basics

Since I have last written there have been a few changes. Jolianne started getting sick and vomiting on Wednesday night and was not able to hold down her feeds. She was getting sick every few hours. They stopped her feeds and started them up again on Thursday evening at
6 cc's an hour. On Friday their goal was to work her back up to 10 cc's and readjust her feeding tube to go into her intestines to be sure that she was getting the nutrition that she needed. Jeremy and I went to see her on Friday and when the doctors did their rounds they decided that they were going to put Jo Jo back in the isolette. (That is the bed she was originally in when she got there.) The attending physician felt like maybe Jolianne was being over stimulated and that is what was causing the feeding problems and the bradycardia. Bradycardia is when your heart rate drops below what is normal for you.In a premature baby it is less than 80. It went down into the 80's when my mom and I were visiting her on Thursday causing the alarm to go off. When it happens it is scary but the doctors and nurses say that it is a common problem for premature babies that usually stops when the baby reaches "term". They are holding off on moving her up to the 8th floor because they want to be sure that she is able to tolerate her feeds along with the supplements that she needs to grow bigger. Jeremy and I are really glad that they have placed her back in the isolette. We have to remember that she is still 6 weeks away from her original due date of November 25. The isolette is the closest thing that they have that creates an environment similar to the womb. It blocks out noise and light and creates a nice warm environment for her to get bigger and bigger. Hopefully this change is just what she needs to get big and strong. Daddy is going to visit tonight so I will update with any new information when we get it.

Movin' On Up

Jo Jo had a realy good evening last night. No problems at all. They are going to be moving her up to the 8th floor today as soon as they get a bed ready. We will let you know when we have any new info about the move.

Love,
Jeremy and Crystal

Making Progress

Daddy holding Jolianne for the first time.

Jolianne's new bed.

Jo Jo made a lot of progress this weekend. After her tube was taken out on Friday she seemed like a whole new person. She opens her eyes and tries to look around. She tries to turn her head to get you in focus or try to see who is talking. She responds best to her Daddy's voice. Every time he talks to her when she is sleeping she tries to open her eyes to look for him. It is the sweetest thing in the world!!!! Daddy held his little princess for the first time on Saturday. I know that the picture is a little blurry but you can still feel how proud he is to be holding his little daughter. Jolianne also moved into a different kind of bed over the weekend. It is more open so it gives her a chance to regulate her own temp and get used to outside noises. They have increased her feeds to 10 cc's every hour. Not really sure how much that is because everything is in metric system!!! I really wish I would have paid more attention in school when they were teaching us that stuff. =( The thing that I do know is that is the max amount of food she can take at this stage. She is receiving no extra fluids, just the breastmilk. If she continues to remain stable she will be moved up to the 8th floor sometime this week. The doctor told Jeremy and I today that the 8th floor is the cardiac floor so she will be monitored for her heart only. The only things that they are watching right now is her temp, breathing and heart. If she continues to do well with her breathing and can maintain her temp on her own there will be no reason for her to be on the floor she is on now. I think that is all that is going on right now.

Thank you so much to Nana for the cute clothes she brought Jo Jo on Monday!!! She was wearing a pretty little pink onesie when I got there to see her today. I will post again when we get more news.

Thank you for all of your thoughts and prayers. We are so blessed to have such wonderful people in our lives.

Jeremy & Crystal

A Very Special Evening

First time to hold Jo Jo

Jeremy and I went up to the hospital last night to see Jolianne and we had a wonderful experience. Because they took her breathing tube out they had her on her belly to sleep. She looked really comfortable with her pacifier in her mouth. After we were there for a little while the nurse swaddled her up and let me hold her. It felt so good to have her in my arms. I never would have thought a week ago that I would be holding my sweet little angel!!!! I also heard her cry for the first time. It was a little raspy because of the breathing tube being in her throat for so long. It was still a very good sound to hear. After I held her the nurse let me help give her a sponge bath. She got very upset with her bath. She was crying and very upset. After her bath she was very alert and opened her eyes to look around. That was the first time that we got to see her with both eyes opened. I know that she can't see very well right now but she was turning her head to the sound of our voices. It was such a special evening of firsts I can't put into words how much it meant to me!!!!

Crystal