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11/2/2011

We were finnaly able to get Liam's feeds up to 4ml's per hour. He seems to be handling them well. He has no signs on respitory distress or high heart rate. Sometime early next week or as early as friday he will be going to have a CT scan. Because he is a baby and moves alot they will have to put him under and intubate him. I know its a test he really needs done but I am worried that this time around they won't be bale to excubate him or when they do him lung will colapse. It's always a fear. After his CT and he starts bottle feeding some we might get to take him home for awhile depending on what the CT shows. We will be back within a month for a follow up with the surgeons. There will also be follow ups with a pulmanalogist, geneticist, ocupational therapist and more. The surgeon told us today her reccomendation is to let Liam heal and rest up from this last surgery before we do another. She won't do his diaphragm until he's completly healed up unless absolutely neccessary. I'm praying we can have him home with us on thanksgiving and christams instead of spending it in the hospital. Pastor Mark came up and fellowshiped with us today. He read us Psalms 141 and prayed for Liam and our family. Spiritually I had been trying to hold on strong but knew I was weak. It did wonders for me to be able to listen to as well as talk about the blessing's God has given us. We haven't been to church in way too long yet our Pastor and our church are supporting us, praying for us. I feel guilty for having strayed away. I feel worse that my daughter hasnt been to church since she was too young to remember. Hopefully, God willing, Liam will be well enough that we can start going back to church. Now its comming up on RSV season and we have to be even more careful than before. There are so many unknown and uncertainties ahead of us.

11/1/2011

We keep getting hit with new issues left and right with Liam's health. Yesterday he had blisters on his face. It turned out to be contact dermititus. They put some cream on it and it was almost gone by morning. Yesterday we had to lower his feeds from 24ml's per hour to 16ml's per hour because he wasn't tolerating the feeds. His heart rate and respitory rate were too high all night long the night before. We had put him back on oxygen that night and it didn't take care of the problem so yesterday morning we lowered the feeds and within hours his heart rate and respitory rate went back to normal. We started mylacon drops and tylanol to help with gas and pain. This morning the specialist came in and gave us more news. They said the radiologist looked at Liam's xray and it appears his left lung (repair side) was stretched out during his repair surgery. Thats not good. It's also the reason his left lung appears twice the size of his right lung when his left lung was his underdeveloped lung. I had asked that question many times since seeing his xrays here at Childrens. Now theyre trying to get ahold of Liam's xrays and CT from USCSF so they don't have to do another one. Theyre hoping the CT and xrays will help explain why and how this happened. Just when I think things are looking up, things go down hill. I'm really struggling with this whole situation. I know God only chooses strong parents for these babies, but the blow is still harsh. They say the first year is full of hard times. Struggles and hospital stays. Then after the first year things are supposed to be more "normal". We're only 3 1/2 months into this. If I'm struggling this much, I can only imagine how Liam feels. It's so hard being here at a hospital 24-7. So very depressing. I won't leave Liam alone for more than I absolutely have too. I feel like I have to be here with him. Going home for a day or two just isn't an option in my book. Home feels so empty without him there. It's hard having two kids when one is in the hospital. It's harder to choose who to be with knowing that the other one will be alone. I know Lanie is not alone but I know she needs me. She doesn't get near enough of my attention as she deserves. No matter what I do it feels like I can't win for trying. ......
The pulmanologist came in and she basically wanted to know if we planned to follow up with them or UCSF. I told her if we could follow up with them we will. She said ok because they were having issues with UCSF wanting to release Liam's medical records even though I signed the paperwork so she wanted to order a CT scan but refuse to do so if were just going to be following up with UCSF. Waiting for her to come back now to let me know. She wanted to know what the plan was for Liams high right side so I told her the plan was it had to be repaired. I also told her that Dr Jones said she could repaire it here at Children's. so our plan was to do it here. I just pray we can start having good news soon.

10/29/2011

Liam is healing from his surgery. There were no complications. His lung did partially colapse yesterday but has since start re-inflating. He hasn't needed morphone since the night after surgery and has only been needing 1 dose of tylanol every 12-14 hours so far. I am very proud of him for being such a strong little boy. He was moved out of PICU today. Liam has slept most the day away again but he needs to to heal. He has only woken up to cry when his diaper was dirty or he felt hungry. Crying for food is an improvement already. It was like music to my ears. He hadn't been crying fo food lately because it hurt his belly everytime he ate. They're slowly weaning him off the oxygen/ We need to completly wean him off oxygen, get full feeds going and learn how to care for the Gtube as well as put one in ourselves before he will be released. We're looking at 5 days min unless they really try to rush him out. We refuse to let them rush him out the door though. I want to know that when we take Liam home that we will be staying home for while before we have to see another hospital again. .

10/26/2011

Liam is going in for surgery tomarrow around 1pm. He is getting a G-tube and a Nessen Fundoplication. Hopefully this will fix the problem and Liam will be able to hold down his foods. He got his first dose of Biotin tonight for his Biotinidase Deficiency and will continue to get it until we get the results back from his test. Theyre going to intubate Liam for surgery. Im not sure how Im going to react seeing a breathing tube in my son again. Too many memories of UCSF ICN. If they have problems excubating Liam then he will have to have it for a few days. It can also take up to 4 hours if there isnt any complications in surgery. If theres not a lot of scar tissue they will be able to do surgery laproscopically. Thats what Im hoping for. Praying little Liam is strong enough to survive this. Hes a fighter, even if he is weaker right now. All I want is for my baby boy to be good. I want him fixed. I want to take him home and enjoy the holidays without having to be in a hospital. Im trying really hard not to worry. I have no idea what Im going to do with myself for 4 hours while Liam is in surgery. I know right out of surgery I wont be able to hold him and that going to be hard. Im trying to keep myself from sleeping in the rocking chair all night with Liam in my arms. He needs a really good nights sleep so he can be strong. Were not exactly sure how much longer were going to be here. We know at least a week. I miss my cats, my house, my couch and my bed. You would think that this would get easier over time but its not. It seems to get worse with every taste of having my son home. I pray to God that we wont have to spend Thanksgiving or Christmas in the hospital. I know things could always be worse. Please pray for Liam.

10/24/2011

Ok we were misinformed it wasnt cystic fibrosis that Liam was positive for at birth like we were lead to believe. His retest for it was neg :) What Liam had at birth was called Biotinidase deficiency. Its very rare. Only 1 of every 110,000 births.Biotinidase deficiency is an inherited metabolic disorder of biotin (vitamin B) recycling that leads to multiple carboxylase deficiencies. The mos...t common early symptoms include seizure activity of various types (myoclonic, grand mal, and focal or infantile spasms) and hypotonia. Other early symptoms include breathing problems (tachypnea, hyperventilation, stridor, apnea), skin rashes and alopecia. Later developmental delays, speech problems, ataxia, and vision and hearing problems may occur. Less frequent findings include feeding difficulties, vomiting/diarrhea, fungal infections, hepatomegaly and splenomegaly. This disorder is inherited in an autosomal recessive pattern. As an autosomal recessive disorder, the parents of a child with biotinidase deficiency are unaffected, healthy carriers of the condition and have one normal gene and one abnormal gene. With each pregnancy, carrier parents have a 25 percent chance of having a child with two copies of the abnormal gene, which results in biotinidase deficiency. Carrier parents have a 50 percent chance of having a child who is an unaffected carrier and a 25 percent chance of having an unaffected, non-carrier child. These risks hold true for each pregnancy. All siblings of infants diagnosed with biotinidase deficiency should be tested. Biotinidase is an essential enzyme that liberates biotin from proteins in foods for utilization by the body. It also enables the body to recycle biotin, which is necessary for proper functioning of carboxylase enzymes. Without biotinidase to release free biotin, the ability of the body to alter fats and to metabolize proteins and carbohydrates is impaired. Complications including metabolic acidosis, coma and death can occur unless supplements of biotin are provided.

The good news is that this is something that can be treated with meds. Yes if he is still positive then he will have to take them for the rest of his life. We will have to have Lanie tested for it because they say all simblings need to be tested because if one kid has it its possible another has it as well. He will also have to see a geneticist regularly. I feel better with this diagnosis than with cystic fibrosis. No Im not happy but it is what it is. Ive done some research and Im sure theres more to it than what I've read online. Childrens hospital is waiting on paperwork they need from UCSF before they can re-test Liam. Apparently we are about 2 days over due in retesting Liam but they didn't know about it and we didn't either. The doctor found all this out when he finnaly got ahold of the results of Liam newborn screaning test. Theyre going to talk to the surgeons and hopefully this test wont delay Liams surgery. Were hoping to keep things on track.

On a good note, Liam had some visitors tonight. His Tia, Uncle, Cousins, and Auntie Jolene came to visit It was a great visit and I got some pretty cool pics :)

10/23/2011

Just talked to the surgeon. They want to run some test before they do surgery. Another ECO of his heart, blood work, re-test for cystic fibrosis since he was positive at birth and a few studies on his lungs and airway. They said they'll try to do it microscopically but if theres too much scartissue theyll have to open him up. They might have to re-intubate him and she said it could be hard to excabate him so he might stay on it for awhile. Itll be hard to see but they have to do what they have to do. They just want all the ducks in a row and have no suprises like hyper tention or anything else. :( They said they might have to put off the surgery for 2 weeks if he is still sick. The first time I got to see my son he was intubated. It was the image that poped into my head when the surgeon mentioned it as a possibility. I felt like we were taking atleast 3 steps back just with his respitory problems. If it came down to intubating Liam and having him crash suddenly during surgery its an obvious choice. Situations like this just don't help my PTSD. I know I need to be strong for Liam and for Lanie and for Justin so I have to keep it together. I know eventually we will get to the point that this will all just seem like it was a nightmare. It feels like a dream that we even had him home, like it didn't even happen. We were blessed that we got to take him home though. We are blessed to have every day we have with him. Liam is a fighter and he will fight to the very end. The statistics for people with cystic fibrosis suck. They're life expactantcy is 30-40 years and 95% of males with cystic fibrosis are infertile. Then again there's no telling how long a CDH baby will live. Theres no reason to think they can't live a long happy life but there are too many unknowns. Again Liam is a fighter and it doesn't matter what he has. He won't give up and neither will we. We will love him his entire life and hopefully, if God willing he will outlive us. I am happy we have answers. I am happy we have a "solution". With the world of technology these days theres no reason to think the worst. I know that we're going to celebrate everyday and every smile. We're going to make sure he lives as normal as a life he can and that he is happy and painless. I know I will continue to tell his story in hopes that it helps someone else and get out awareness. Being a mother of a baby with Congenital Diaphragmatic Hernia has changed everything for me. It's not an easy road. It's a long, hard, dark road we have ahead of us but Liam's smile gives me the light I need to see the end.