Jo Jo had a pretty good day today. Her cardiologist says that she should be able to go home within the next week. Today I took my CPR training class and our Social Services rep came to talk to me about Home Health. I really can't believe that we are getting so close to going home. It almost feels like a dream. Jolianne is receiving her feeds over an hour and 45 minutes. She only needs to get it down by 45 minutes and she can come home with us. We hope that she will be there by this weekend and we can spend the night with her with no monitors on. We have continued to practice giving her meds and preparing her feeds. It feels so good to be taking care of my little angel. It is so weird to be getting up every few hours to feed her and comfort her. She is 3 months old now and I am just now doing these things. I hope that tomorrow Jeremy and I will get training on how to place her NG tube. That is the last of our training and we will be cleared to take her home as soon as she gets her feeds where they need to be. Thank you so much to everyone for their continued prayers and support. We could not do this without you!!!

The Training Has Begun.

Pretty Princess

Yesterday afternoon they went ahead and pulled Jolianne's PICC line out. This morning they turned off Jo Jo's oxygen machine and she is doing very well without it. They said that we can remove the cannula today if she continues to do well. I have started learning how to give her medicine in her feeding tube. They let me do her meds this morning and I will get to do the other meds that she gets this afternoon. I am going to learn how to place a NG Tube on a practice doll this afternoon. Then I will do a few on Jo Jo so that I am familiar with the process when we go home. I am suppose to take a CPR class sometime this week also. We are hoping that they have one on Friday so that Jeremy does not have to miss work to come to the class. Jolianne continues to do better and better each day. I can hardly believe it. It seems like we have been here so long and to finally see a light at the end of the tunnel is miraculous!!! We will continue to pray that Jo Jo will not have any trouble and she can get her feeds down to where they need to be and then we will start our new adventure: "Life at home with Jo Jo".

Some pictures

Making Amazing Progress

I know it has been a while since I have written. We have been so busy lately. With the boys off for Christmas it has been a little bit of an adjustment to my routine with Jo Jo. We had a really great Christmas and the best present of all. On December 26 (Saturday) Jolianne was moved to the 8th floor. I was a little nervous as first because I heard that it was very different from the ICU. It is very different, I get to take care of Jo Jo and do regular Mommy stuff. Changing her diaper, rocking her when she is upset, getting her formula so that she can eat. I also get to get her dressed each day. I really like that part. I do have to call the nurse in to undo her PICC line because she has to clean it really well when we are done. I am giving her baths and changing her bedding too. They are working on taking her off of her cannula and just breath on her own without any extra help from the machine. They are also talking about getting rid of her PICC line because she is receiving all of her meds by mouth now. She is barley getting any pain meds and she is tolerating that just fine. She will probably have to go home with the feeding tube in because she has fed that way for 3 months. Once they change her feeds to bolus, we will start working with speech therapy again so that we can start practicing with a bottle. Once we get home she will continue to get speech therapy and physical therapy in our home so that she can get caught up on where she needs to be. They haven't really given us a go home time yet. They just say that it will depend on how quickly she can get to 1 hour on her bolus feeds. She has to be able to tolerate getting her food down in one hour. As usual we will just have to wait and see how she adjusts to everything. She has looked really great for the past few days!!!

Jolianne had a great day today. She is doing very well off the breathing machine. She has been a little sleepy the past few days so they started holding back on some of her sedation medication. Today she was awake a little more than yesterday. We are keeping our fingers crossed that she does not come down with an infection and have to be placed back on the breathing machine. I really hope that she can continue to get better and get to go to the 8th floor sometime soon. They are saying that it will be at least 2 more months until Jo Jo is well enough to come home. She still needs to get a little bigger and they also want to be sure that the VSD does not cause any problems that would put her life in danger with us living so far away from the hospital. It is still very possible that they will need to fix the VSD before she can come home. We will just have to wait and see what happens. At any rate, I am so very happy that she has been comfortable these past few days. It means so much to me to look into her eyes and not see any pain or discomfort. Yesterday, before I held her, she was crying and they asked me if I wanted to hold her to try to calm her down. I said that I definitely would love to hold her. As soon as she got situated in my arms she nuzzled her face to my chest and fell right to sleep. It felt so good to have her in my arms. Any one out there that has the opportunity to hold a baby, take them in, all the way, that is something that I don't think I really did with the boys. They way their hair smells, the way their face looks so peaceful, the way their breath feels on your face. It is all so magical. I don't take those things for granted anymore. I never know, when I Jo Jo, how long it will be until I get to hold her again. Things can change so quickly in the ICU. I have to be glad for the good days and pray that the bad days will get better. That is the only way that I can make it through each day!!!

Finally

A picture is worth a thousand words!!!!

The Ups and Downs of Hospital Life

Well, a lot has gone on since I last wrote. They took Jo Jo off the breathing machine on Tuesday evening. She did very well all through the night. They took out the Central line that was in her right leg also. Since she has the PICC line, they didn't feel like she needed the Central Line. They said that the placement of that line in her groin area was at great risk for infection because it is in her diaper area. The PICC line is a long term line, so as long as they have it established they really don't need another one. Wednesday morning she was running a fever. They took some blood cultures and sent them to the lab for testing. She was also having some trouble with her lungs. Her right upper lobe had collapsed causing her to not be able to oxygenate her body properly. Because she was having to work so hard her heart rate was up in the 180's. She also started to have labored breathing. Her stomach would suck in under her ribs when she would take a breath. They decided to put her back on the breathing machine to help get her back where she needed to be. They didn't want her body to go too long without having sufficient oxygen because that can cause organ failure. We were very sad that she had to be put back on the breathing machine. We understand why it had to happen, but it is still hard to see her in so much discomfort. When I got to the hospital today, she was awake and having respiratory therapy. She seemed to enjoy it. They give her a massage on her back to get her lungs free of an secretions that build up. She used to hate it, but now she really enjoys it. After her massage she was wide awake. I talked to her for a little while and told her some stories. She was really paying attention and seemed to enjoy the stories I was telling her. When I would walk away she would get upset and cry. It really made me feel good to know that she liked me being there and that she was aware of my presence. We were really hoping that Jo Jo would be off the breathing machine for Christmas so that we could hold her, but it seems like that may not happen. We will just have to wait and see. It is 8 days away so you never know!!!