Taking the good with the bad!

We found out that Victoria has a broken leg, possibly fractured in 2 different places. For sure above the knee "the femur bone". They scanned her whole body and we are waiting to hear the final results. She had physical therapy Monday afternoon and was very sore after that. Crying and fussy and unable to move her leg. It's very hard to watch her in so much pain and it seems to be getting worse for her. She is not able to sleep. We really do not know what to make of this. It is like waking up from a bad dream and hoping it all will go away. I really just do not understand why such a little baby has to suffer so much. I keep praying to God for peace and understanding.

Getting better every day!

Well, we made it through another uneventful week with Victoria. That means things are still heading in a positive direction. She is very playful and energetic to say the least. We have been getting her out of the crib a couple times a day. She works with Occupational and Physical Therapist's every day. She has been laying in the crib pretty much for the past 6 months so she has a lot to catch up on physically. The doctors weened her off of 3 different diuretics this past week. She is only on one now called Lasix. This week she will be off of her methadone and ativan. We have been weening this ever since she was last paralyzed and sedated for her trach issue. Also Victoria is off of the vent 8 hours a day and doing fine with that. The doctors want to see if she can go home off the ventilator or maybe just for night time. Thank you for all your prayers we really appreciate it. We will keep trucken along and update soon.

Prayers from all over the world!

We have been supporting a missionary from South Africa since 2005 called Glory Power Ministry founded by Don and Myrna Paprocky. They are an awesome couple of God that we meet in Tampa Florida when we lived there. They have been praying for baby Victoria since before her birth. We love you guys! Don was telling Eddie about a young man in Africa named Alloy that prays for Victoria every morning. That is so awesome to hear and we are so excited to know that people all over the world are praying for our little angel. Thank you Alloy.

Another Good Day!

Another day worth talking about. I am so proud of Victoria.... They took her off her breathing vent that is hooked up to the trache for an hour and just gave her oxygen. She did so well. They think that she may go home without the vent being needed. That is great news for all of us. Now on the other side somehow her sedation med(methadone) fell off her charts and she has not received her methadome for over 24 hours. We just found out about it. Victoria has been sweating severely and going through with drawls but honestly handling herself very well considering. You have to ween very slowly, they have been taking away by 10% dose daily. On Sunday her Valium fell of her charts and she got really sick. I can not wait until she is off all of these sedation meds. Stay tuned for more updates. Thanks for all of your support and prayers.

Daddy's Girl

Update!

Hello all, Victoria is doing good for the most part. She had a really good weekend until Sunday late afternoon. She has been fighting fever and high heart rate again. She is dealing with being weened from the sedation meds from her surgery. She has been very restless and unable to sleep last night and today. The with drawls are just part of the territory and we know they will not last but for a few days. She is also teething too which makes it hard. Also we think that she has ringworm. The doctors won't have the test back for 2 weeks to confirm but they are treating her with anti fungal medication until then. Ringworm is not a worm, its a nasty rash on the skin. Hers is on her face and is spreading to her neck. It can be very itchy to say the least and the doctors say it will take about 6 weeks to clear it up. It is very contagious and we have to be very careful not to spread it. The doctor gave her face cream Saturday for part of the treatment but she had a reaction to it. What a mess that was for a few hours. She was itchy and red and swollen all over her face. She was thrashing around the bed like she was laying on ants. When we stopped using the cream it went away THANK GOD! We are praying and believing that her week will be as good as last weeks. Thank you for all of your continued prayers we really appreciate all of the support.

Abuelo Junior and Abuela Connie visit from Venezuela

Getting Better Day by Day !

Victoria is making good progress. She is feeling better each day. We have her sitting up throughout the day playing and moving around as much as possible. She is doing great with the trache and her neck is almost healed up. The docs have been weening her vent settings each day and the goal is to have her off the vent next week, meaning she will be breathing on her own. So far she is agreeing to the plan. The docs also have been weening her off of the sedation meds, she also has trouble with this but so far she is handling it well. We thank you for your continued prayers for Victoria.

Supporting Moriah! We love you!

I received blue ribbons from Moriah Nelson's mom this week. Her name is Victoria too. She has been a great friend to me and has helped me along the way with Victoria because much of what Victoria is experiencing Moriah has already gone through . We are wearing them around are wrists and believing that she will be home very soon. The blue ribbons will stay on until she is at home where she belongs. Please continue to pray for Moriah she has been through a very similar journey as Victoria. We Love you Moriah :) http://www.momentswithmoriah.blogspot.com/

Good Weekend!

We had a good weekend. Victoria started feeding again and has been feeling much better. Her neck seems to be healing nicely too. I was able to hold her finally.. its been about a month or so. She was so tired getting out of the bed but she sure enjoyed it. We are having an issue with her trach tubing popping off every 2 minutes. Does any Mom's out there have any suggestions to help this? Please give a shout out to me if so. She has a Shiley Trach. Take care and we will keep you updated as usual.

Big Brother EJ

EJ has been really busy preparing to be the best football player in West Palm Beach. Can not wait to come see you win a game EJ. Love you, Victoria

Great Friends

Haven't been able to take pics recently and wanted to post some great pics of great friends and family. These were taken right before her recent surgery. Thanks Lucas for making such a great picture for Victoria she loves it.

Trust in the Lord with all of your heart and lean not unto your understanding in all of your ways acknowledge him, and he will make your path straight. Do not be wise in your own eyes fear the Lord and shun evil. This will bring health to your body. Proverbs 2:5-8

Think positive, Paralyzed Again!

This weekend Victoria had some issues to deal with. She got another blood clot from her pic line they put in last week. So they had to take it out. Now she has 2 clots to deal with and no real IV access. Also her trach area got really irritated to say the least. The doctor was supposed to change out the first trach and trach ties Thursday but decided to wait until Tuesday. The problem with that was her trach ties were much tooooooooo tight for her little neck. They cut into her neck and was bleeding quit badly. Now the plastic surgeon had to come today and paralyze her and put her back on sedation to put 4 more stitches to told the trach in place because he does not want any trach ties right now because the cuts are so bad. She has to remain paralyzed so the neck can heal. We just got done weening her from Fentynal and now she is back to a strong dose again. I was so upset last night and frustrated. No doctor had come and actually looked at her neck since the surgery. I new something was wrong because she looked as if she was in so much pain. She was not even able to breath right her neck hurt her so badly. I just have to give it to God because otherwise I will go crazy. Thank God Eddie and I ran to get the doctor Saturday night around 10:30 p.m. to look at her neck. We could not stand it any longer. We mentioned numerous times to her nurse Frank on Saturday but he was not concerned and chose not to let the doctor know about her neck. When the doctor saw her neck his eyes almost popped out of his head. He asked why her nurses did not let him know about this earlier. Well because no one was looking after her neck. She is in the ICU and I do not know how this can happen. Now Victoria pays the price. Please keep her in your prayers . O and her white cell count is up again which I think is fighting her infection at the site of her neck. They took another blood culture to make sure nothing else is starting. Her lung x-ray looks hazy too, they took a trach culture to rule out another case a pneumonia or bateria growing. But the docs have not mentioned much about it. You know the holiday and all. Its hard to keep things moving here this weekend. O I wanted to say I am thankful for Lisa the charge nurse. She listened to me cry and yell last night and she made sure that the plastic surgeon came today on a holiday. I really appreciate her helpfulness and respect for my little girl. Thank You! She is the one that took charge and got things addressed. I wish I would have went to her earlier....

New visitor: Bailey

Victoria got to see her first puppy. She loved Bailey!

Smiling Through it all!

Today Victoria is feeling better. She received a blood transfusion yesterday and that really helped her out because her hemoglobin was very low and she was very pale. Her staturations are much better now. We are making progress. Her fluid in her stomach is almost gone too. They took out the central line yesterday and drained 60 ccs of fluid from her stomach. She feels much better after that. Now we can start her feedings again. That's it for now..

What next!

You establish peace for us Lord; all that we have accomplished you have done for us.....
Isaiah 26:12

Well baby is doing good and recovering well from her trach surgery. However we found out some disturbing news that Victoria now has Ascites. Which is abnormal accumulation of fluid in the abdomen. Victoria has a central line that they put in her hepatic vein which is in the liver. Well they found that something went wrong with the line because the babies stomach looks like a large football. We were asking them about this for 3 days now. They told us that it was gas and I told them I have never seen her stomach look like this from gas. Finally, today thanks to Dr. Bolivar taking quick action, they found the problem. I really don't understand this and they have not explained it really well to me yet. What is the cause? Hopefully we will find out more tomorrow. Dad almost got into a screaming match with the doc that put the line in. The doc wanted to rewire it for the 3rd time. We wanted it out because it is causing too much trouble for her and it keeps coming out of position. Now she has this fluid supposedly from the line failing. She got a pic line put in today and they are taking the line in the liver out tomorrow. I guess they could not just pull it out because she could bleed very badly. I am so over these set backs. Victoria is such a trooper smiling today even though she can't barely move because of the swollen belly. Please continue to pray for us. Peace would be a great thing right now.