Life outside of the Hospital

So, we all have been trying to adjust to life outside the H. I am not really used to being around normal people just living life. I really can not get used to the traffic and lines in the grocery store things like that. Fort Lauderdale is really busy this time of year with all of the snow birds. Times like this I really wish we still lived in Tampa because its not crowded at all. We can not take Victoria out anywhere right now with the flu season. The doctors found out the day she checked out of the hospital that she has something wrong with her immune system. We went to see her immunologist last week to find out more info about her immune system. V had 12 ccs of blood taken from her and she was such a good little girl. We have to wait 2 weeks for results. I have been giving her Cod Liver Oil because I have found by research that cod liver oil is excellent for boosting immune system and brain development. I will do anything to help V. It really does stink. That is were the G-Tube really comes in handy. She really has been doing really good these days. We have finally started Physical, Occupational, feeding and speech therapy. These therapies will really help her. We also found out that V needs some Hearing Aides ASAP. We are going to one of the best places for that at the U of Miami Jackson in January. Her right hear has significant hearing loss and the left moderate. The hospital that we are going to also does implants but we do not know if she will need them yet. Next week we will also be seeing a new nutritionist about getting her more calories. I would like to keep her diet completely organic. Hopefully I will be able to get her some fruits and veggies via Juicer really soon. O and Grandpa BOB will be here for Chrsitmas too. We are really excited to see him. We wanted Uncle Eddie to come but he can't this year and we are really disappointed about that one. we will keep updates coming take care God Bless....

Tummy Time

Thanksgiving!

Thanksgiving day I woke up thankful for Life...Smiles from my little girl...and the blessing that I have such wonderful friends and family that love and support us so very much through the tough times.

Hello World

VeggieTales - God Made Me Special

One of Vs favorite Docs!

We all have been busy Learning about Victoria!

It's been a very busy week. We discovered that our ceiling has water spots and found out that we have a roof that is leaking in three places. Great! Things brings the issue of mold in the house. We have also been busy learning about Victoria. She sure has come a long way this past month. With that being said, I have been able to see things with her that are not right or are a little off. Something maybe that only mothers can see. We know when things are just not right with our children... Right? I have been searching for a doctor that can really help Victoria with things like: nutrition, immune system, supplements & vitamins, to really learn Victoria, and possible detox from all of her meds that she has been on this past 8 months. If I listed them all, you would be amazed that a little one less than 2 years old could have had all of them in her little body. Oh, not to leave out that she had an xray every day for the past 7 months. I was wondering what that could have done to her little body too. Thanks to Doctor Courtnee, she recommended Dr. Udell. Not knowing what to expect, I called and made an appointment with him last week even though he did not have an appointment open until mid Dec., I guess my years in sales does pay off... He focuses on the things I listed. Come to find out, he discovered that miss V is full and I mean full of candida yeast. He put her on a strict routine to detox her from this nasty yeast. He told me that the symptoms that I described to him about V could all be from the yeast. Like being irritable and unable to sleep, rashes, zoning out, almost like she is not with it. I noticed that about 2 months ago. She started starring at her finger almost like she was stoned looking at it and also grinding off her teeth. He informed me that is like an autistic stim and could be caused by the yeast. Victoria also stopped smiling. So after one week of this doc's routine, she is now smiling more, playing more, not looking at her finger as much, and is less irritable. This stuff could take months to totally come out of her body. Dr. Udell believes that the yeast came about because of so many antibiotics and a weak immune system. Just a peak of what antibiotics she has had this past 8 months:

Zosyn, vancomycin, cipro, cleocin, zaroxolyn, zyvox, fortez, ampicillian, amoxicillian, cefepine, keflex and Victoria is still on bactrium for her week immune system.

The bottom line - V has been more herself the last couple of days and we see this doc again in 3 weeks to continue to clean her out and strengthen her immune system. He is also looking for a good nutritionist for her too. I believe nutrition improvements along with supplements will make a big difference to her development.

Getting back to playing like I am supposed to!

We had a pretty good week. V seems to like it at home. We have stayed out of the hospital now for 3 weeks. Praise God! V loves her new high chair that Grandma Diane got her. We took her for her first walk on Saturday to Starbucks and she loved it. She is supposed to start her therapies soon. Speech, eating, physical and occupational... We look forward to getting back to the Dan Marino center because she loves her therapists there. We used to go before her heart surgery in March. I will keep you posted about the good news.

Feeling better & sleeping better

The last couple of days Little Miss Victoria has been sleeping through the night and feeling much better during the day. The test on Monday showed that her nissen is working well and it would be very unlikely that she would be refluxing. We really do not know what was wrong with her but she did test positive for the Rhino Virus which is a common cold. Her mouth is feeling better too. The docs cultured her tongue and it did not test positive for the fungus called Thrush, but who knows really. I am just hoping that the symptoms do not come back. We are home too and she is getting used to everything here. She loves the Veggie Tales and she has been busy jumping in her jumpy chair...Thank God for Grandma Diane helping us out at home. We had home nursing for the first week but that really did not work out well at all. I wish I could tell you my experiences with home nursing but out of respect for whoever is reading the blog I will leave it at that. I will have some pictures of V at home up soon. Please continue to pray and we thank all for keeping us in your thoughts and prayers.

Hoping & searching for the answer!

I have been so frustrated and stressed trying to figure out what is wrong with Victoria. I have not been able to update because my attitude is so negative. She really can't sleep so I do not either. At any case, I thought I would let you all know the latest with V... she has been back in the hospital twice since her first discharge and we can not figure out what is wrong ... They have done blood work and lab tests and nothing came up. Docs treated her with strong antibiotics and anti fungal meds via IV for 72 hours for Thrush and still no change. Maybe someone out there has some insight as I am desperate for help. She has been drinking pedialyte most of the week because it makes the symptoms go away and she can get some sleep, but how long can she live on pedialyte. I have tried changing her formula 3 times that has not worked. Victoria's Symptoms:

• fever of 101- 103 with around the clock Tylenol for 2.5 weeks (none for past 5 days)
• irritated mouth seems like its burning her ?
• white tongue-we have already treated her for Thrush and did not work.
• not able to sleep
• high heart rate
• nasty rash on face

I will update when we have some news...... We are having an upper GI test Monday to see if her fundo slipped and could be refluxing??? But we looked at that when in Philly and it looked good.
I get so frustrated when V has a hand full of docs that know her symptoms but no answers. We do appreciate there care of course but without solutions to the problems we are left with ?? and of course V is the one to suffer. It is so hard to watch her suffer and not be able to help her. It's like a sick joke . I have had enough already...

Back to the hospital we go!

It has been a crazy week. Since we first came home we have been back twice to the hospital. We last went home Tuesday and Tuesday night we were back were we started. We can not figure out what is wrong with Victoria. Still getting fevers and her mouth is really bothering her. She has white stuff on her tongue so they originally thought she had thrush but I really do not think so because the only thing that makes her mouth feel better and her fever to go away is antibiotics. So the doctors start her on antibiotics and then nothing shows up in her lab work as far as bacteria so they stop them and then go home and she gets fever and sick and keep going in circles with this. So she is on antibiotics right now and finally feeling better again. I hope they keep her on them regardless what the culture shows. They moved Victoria from the ICU yesterday so things have been more laid back for us, but of course its not home. Please continue to keep Victoria in prayer. As usual we will keep you posted.

Quick Stay at the Homefront!

Sorry we haven't been able to update for awhile. Victoria came home for five days but became sick and ended up back in the ICU. Things have been really crazy at the homefront. Our computer has not been working so I couldn't update, but now that we are back in the ICU I again have access to the computer and internet...... It felt sooooo good to be home again with our angel. But she had a fever from the first night she came home. I thought it was just teething but as the week went on she got worse. Her heart rate was really high and she was on around the clock Tylenol and still the fever would not go away. She was unable to sleep for more than an hour at a time so we thought it was just her getting adjusted. We soon learned that was not the case. So the first night we were home, I get a call from her Immunology Doctor telling me that blood work came back indicating that Victoria has an immune deficiency because her T cells are extremely low. They put her on an antibiotic for maintenance called bactrim. This will help her immune system. We are still learning what this will mean for her health, its not really the news we wanted to hear her first night home. Grandma and I have been extremely tired because of being up all night with her taking turns. She just wasn't feeling well. She was acting like her mouth was on fire so I thought of teething. Come to find out that she has a fungus called thrush in her mouth so bad that her tongue turned green. She also got such a bad rash on her face which we also think is a fungus not really sure yet. She became so sick on Saturday night that we were debating to call 911. She had a higher fever and tachycardia and really acting miserable. But we made it until Sunday morning to go to the ER at Miami Childrens. They have run a bunch of tests on her with the suspicion of mono. Now we are just waiting. She has been sedated all day because they gave her a really high dose of chloralhydrate so they could do an echogram of her heart. So for now it is just wait and see. She has not had a fever since 10:30 last night. But something just doesn't sit right with me. Her head has been really swollen and I worry about that too. My mind is really fried right now.. so I should quit babbling .... Stay tuned for Victoria's Journey.. Please keep Victoria in prayer..

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.

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.

Hello.. Mommy the Beautiful!

Me after six months in the hospital ICU.

Thought I would share with you my dark circles.

Somedays I feel and look like I was run over by a Mack Truck:) Today is one of those days.....

Surgery Day

Well what a crazy week. I am utterly exhausted....... I can only imagine how Victoria feels.

Eddie and I had meetings this week to discuss the game plan for Victoria with her docs. We really respected our discussion with Dr. Zahn and Dr. Bolivar they are really good docs along with many of them here at Miami Children's. They believe the only way to get Victoria home and give her a chance would be with a tracheotomy. We have been reluctant for some time but decided to agree with this care plan at this present time because nothing else seems to be working, in other words there really is no other option. The longer she is in the hospital the more chances of her catching another bacteria germ or virus. She is currently on another antibiotic called Zosyn for 2 bacteria infections and her white blood cell count is up again the last couple of days. So we want to give her as much help as she needs right now and the docs really believe strongly the trach will help her. We pray, trust, and believe because that is all we can do at this point. Victoria had her surgery for her trach and replacement of ear tubes Friday. She came back from surgery around 8p.m. and she is in a lot of pain so she is paralyzed and sedated. Last night was pretty tough. Victoria does not like change in general and surgery of course was an adjustment for her alone. She came back from the OR with very low saturation's in the 60s. Also Victoria had a new nurse one that has never taken care of her before. That alone is hard because Victoria is so complex things that you would normally do with others do not work for Victoria. She had a major episode of desating intot the 40s last night when the nurse decided to stop her sedation and paralytic for 10 minutes so she could run a diuretic through the iv port. The diuretic called lasixs was not compatible with her sedation medication. Victoria freaked out to put it mildly. She started moving around like crazy. Her heart rate and blood pressure went up significantly while her saturation's went down to the 40's. Just after getting her stabilized this happens. I got really mad because if she would have told me what she was doing I would have told her no way, I know that Victoria will flip. It is now noon Saturday this happened at 11 p.m. last night and she still has not fully recovered. It is frustrating to me when they give victoria a new nurse that has never taken care of her before right after surgery on a Friday night. It seems they always learn the hard way with Victoria, of course at Victoria's expense. She was given a bolus of sedation called medaz that makes Victoria crazy it has the opposite effect on her. Of course they did not know this and of course they did not ask Mom. You know what happened. I have to remember that nothing is perfect but I'm so tired of the same issues taking place. It just seems so simple to me to give Victoria a nurse that knows her I would sleep better and Victoria would be better off. This morning they decided to put her on a new antibiotic called zyvox because she looks so pale and her saturation's are not coming up easily plus her white cell count it up. They want to make sure she is not getting another infection. Also she is getting a blood transfusion right now , the 4th transfusion in the past 4 months because her hemoglobin is low for her norm. It is sitting around 12 to 13 however because Victoria's saturation's run low in general they like her to be around 16 to 18. Ok I am done venting for now. Please keep us in your prayers this road is extremely long and tiring. We will keep you all up to date.

Benefits of being raised in a small town with big hearts!

It's been a real trying week for Victoria. Thank God she is still very stable. She still has a breathing tube in and will until she has her tracheotomy hopefully next week. The doctors have told us that the trach is the only way to get her home safe. At this point that is all we want for her. I woke up early this morning to get to the hospital and thought that I would check my email and glad that I did. Stacey MacMillan sent me an email to let me know about the fundraiser that Star Boriin and Shelly Perkovich have been working on putting together for Victoria. THANK YOU SHELLY, STAR, STACEY, and all the others that are involved with the fundraiser. We really appreciate and are so grateful for all of your efforts. THANK YOU TO BARK DESIGN FOR putting together such a beautiful flyer for our little angel. I can just say that there are benefits to growing up in a small community like Chisholm, MN. This fundraiser is an example of how people care....... THANKS AGAIN ... This has really made our day!

The Journey

Victoria is improving and becoming more stable every day. They are slowly weening her off of a bunch of meds she was put on Tuesday when she crashed. No more dopamine, she is almost off of nitric oxide. Her heart rate and 02 are back to normal. Hopefully today they shut off the Fentanyl. They doctors were very impressed that she was able to maintain herself when her 02 was so low for so long in the 30s. She has not had a fever in over 24 hours. They have her on 2 antibiotics which seems to be helping. She tested positive for another staph infection. The docs believe that Victoria is aspirating her Silvia into her lungs and then gets sick because bacteria gets in the lungs. They are stumped as to why she did not aspirate before her Glenn surgery and after it is a problem. There is nothing they can do for that however, they believe a tracheotomy would be the best thing for her at this point. They explained to us that even though she did not have problems breathing the trach may help with aspirating. I wish we knew if it will help. However, we do know that victoria's body does not tolerate intubation. The last 3 times they intubated her she almost died. They are stumped about that too. When you intubate a child it usually helps them not hurt them. With the Trach she will not have to be intubated again from which I am told. The docs say that her low saturation's come when she aspirated her Silvia and then her lungs start to collapse. This has been the crazy cycle she is in for the past 3 months. They are hoping the trach helps but they said they will not know for sure until the procedure is done. For the next couple of days the plan is for Victoria to get her strenght back and then we will talk to the ENT doc next week to proceed with the trach. Please keep Victoria in your prayers. thank you .. talk with you soon....

A New Day!

I wish that I had a new picture to show you this time but that is not the case.
I just wanted to give an update sense it's been a few days. Things got pretty serious over the last few days for Victoria. Over the weekend Victoria began having fevers again along with coughing and sneezing and increased secretions just like the last time in Philly. I knew something was up and trying to get ready for what was to come. It is so hard watching your child knowing something is wrong and trying to explain to the doctors and nurses but until something really goes wrong we have to wait it out. Sunday night Victoria began desating into the 60s with 02 and her normal sats should run between 75 and 85. Mind you this was with CPAP which is pressure support to her lungs. I have not seen that before so I new something was coming down the pipe. The XRay on Sunday showed possible pneumonia again. The docs began treating her with antibiotics on Monday. But she was not doing well her lungs began to look concerning again. Yesterday they decided it would be the safest to reintubate Victoria. Because Victoria's heart anatomy is different she does not respond well to vent breathing support. With her heart Glenn procedure it is not ideal for a kid to breathe on a vent. So every time she gets intubated she crashes. That is what happened yesterday just like we told the docs. They are getting to know Victoria here in Miami so they did not know what to expect. They intubated her at 2:00 p.m. and around 5:30p.m. the nurses came to get Mom and Dad to tell us come say a possible last good bye to Victoria. They could not stabilize her and were very concerned. We have been through this before and called pastor Joey Perez to pray for another miracle for our little angel. It was a long night but by the Grace of God she is still here critical but stable. God is so awesome! If it weren't for his grace I have no idea where we would be today. Pastor kept telling me "Keep Believing, just Keep Believing" that is what we do everyday. Thank You Pastor Joey for not giving up on us and our little angel. We love you and your family! Currently Victoria is in the Operating Room because she is having a central iv line run through her liver. We do not understand it but that is the only place they can run it. Victoria is getting a drug called dopamine which can only be given via a central line. Last night she did not have one so they had to run the med through a regular iv and she has nasty burns all over her skin from the med. This medicine was needed to stabilize her last night. It was the only way to keep her blood pressure kinda normal and her sats kinda ok. They were as low as 30s. That was pretty scary. We do not know what is next for her. Please keep praying that God will reveal her issues to the docs. They are talking of doing a tracheotomy next week. We will see. Keep the faith and keep believing with us that Victoria will be home soon.

I love to blow raspberries

Now your Talking Baby!

Hey Peep's What Up?

I Just pulled my CPAP off my face! "oopsy daisy"

Making the best of it!

Hello everyone. I just got my bath which I love very much. It's so relaxing! I am still hanging tight. It's been a tough couple of days but today my XRay looked even better. I have been on a machine for breathing called CPAP it really helps me breath and expands my lungs. It's like extra large nasal canula's stronger than O2. They hope to put me on breathing support called vapor therm which I can't wait because it's easier to use than CPAP. I pull it off my face or turn and it falls off. I have been keeping the nurses very busy. I also get chest physical therapy every hour. Until the doc says my lungs can manage without it. It's really hard to rest getting chest pt every hour but it has to be done.

Miracles do happen!

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Here is a picture of Victoria's lungs this morning ( little one, left side) and this afternoon( larger one, right side). Lungs are supposed to look black. As you can see earlier this morning the left side was completely white. BUT this afternoons is almost fully expanded on both side. She will not need to be re-intubated today. GOD is GOOD.

Ours prayers have been answered. Victoria is pulling through good today. Her X-Ray looks 50 % better than it did this morning. Her doctor is very pleased to say the least. He commented on what a fighter she is as she made a huge comeback today. She has been sleeping most of the day because she was up fighting all last night. Finally she is able to sleep comfortably. It is very painful to have a collapsed lung it really hurts to takes breaths. You can see the miracle for yourself.

Little Fighter!

Victoria got her breathing tube taken out yesterday. However, shortly after her left lung collapsed. They are trying to get the lung open by putting her on C-PAP which is a machine that blows positive pressure into her lungs. So far its not working. She has been fighting all night long. They are going to take another X-Ray today at 2:00pm to she how the lung looks. At that point they may decide to reintubate her. The last 24hours has been so stressful. Please keep Victoria in your prayers she needs another miracle. She needs to get out of the cycle of machines. We will keep you posted.

Finally this big tube comes out of my nose!

Finally, the big day has come for Victoria to be extubated. It has been one month of having a really big tube in her nose to assist with her breathing and to help rexpand her lungs that collapsed about one month ago from pneumonia. She is a trooper the nurses can't believe how well she has done with the tube in. Most babies need to be sedated or are just plain miserable. But Victoria always makes the best of every event. She has been busy playing as much as possible with the tube. We can tell it bothers her at times. She coughs a lot because it rubs in the back of her throat and gags her at times when she gets too rowdy..... We are praying that the extubating goes well for her ..... She also had another ecogram of her heart today and we will hear from the doctors tomorrow about the status of her heart. Please keep her in your prayers for a speedy recovery from the extubation and for her safe return home. We will keep you all updated. Thanks for all of your prayers.

My Mom takes naps when I do!

Awe Loving the hospital life. Everyone was asking where we slept in Philly:)

Daddy's Little Girl!

I love being with Dad!