The Rock Star

Another visit from big brother EJ

Finally....We have a date to go home!

We have been really busy getting ready for Victoria to come home. She should be going home Monday. There are many things that have to be done. All her equipment for home, home nursing, meds, and clothes. She went to the hospital wearing size 8 months and now she fits into 24 months - 2t...... She had an off week with fever and fussiness and a lot of secretions but nothing serious. I still think her not feeling well was from her synergist shot... she started to feel better on Friday.. and is doing good over the weekend. On Monday she will be having a hearing test called ABR.... That is the last thing that needs to be done before going home. I have remained pretty indifferent about it because I don't want to get too excited too soon and then not make it home. So Dad and I have been hanging on the down low just waiting for Monday.

On with Victoria's Journey!

Well, of course Victoria had to throw another curve ball..... Last night she spiked a fever and became very tachycardia. Her heart rate was around 260s. I am wondering if it is do to a shot the docs gave her yesterday called synergist. It's a vaccine to help prevent her from getting RSV which can make little ones with heart conditions very sick.... so they say she should get one every month until she is two She used to act up whenever she got this before. So I really wonder about this shot for her..... ??? She has not slept in about 20 hours and she is totally restless and hot.... She finally fell asleep and I am here standing guard to make sure nobody comes in to wake her up. She has been through a really rough 24 hours.... The doctors were talking about her going home this Friday but I do not think that will happen but I still think she will be home very soon. Please continue to pray for our little angel...... That is what really gets her through these crazy times..

I'm 16 Months Today!

Hello Everyone....It's been a really good week here at the CICU. I am getting ready to go home. They are talking about next week or week after. I am off of the breathing vent and just taking in oxygen now. I also have to change my formula before I go home. I have been on a lower fat formula called portagen. I am going to switch to a organic formula called pedia smart.... I am still fed via my G-Tube.... but I can't wait to start my feeding/speech therapy again with Dr. Simone so I can have another swallow study to eat by mouth. I have been very happy playing as much as I can with my cast on my leg. No word on how long it will stay on. I will keep everyone posted on my progress. We appreciate everyone's prayers..... Take care for now...

I finally made it out of the ICU

My Doctor thought it would be good if I go out and get some sun today. The Vitiman D from the sun will help my bones and many other things. I was so happy because I got to wear my new sunglasses too. So my nurse Diana, Dr. Soler and Oni helped take me outside today. I loved it! I felt like a little princess...

I haven't seen the sun since March... I love it

Awe.....What a week!

Quick update. We found out Friday that Victoria also has a compressed fracture to her lower vertebrae L3. I knew that she had something wrong with her lower back too because ever since that Monday after physical therapy she cried when we changed her diaper along with her leg hurting her. I mean CRIED and still CRIES sometimes it takes 2 nurses to change it. There is nothing one can do to help her back but time. They have sent off blood tests to see if her vitamin D, Calcium, and other minerals are lacking. She has been on a special formula since March after her Heart Surgery because she developed a fluid that lined her left lung called Chylus which will increase with fats from infant formula. We will be working on changing her formula next week.