CDH Awareness Day Today

Today is CDH awareness day, one of them anyway. Breathe Of Hope (A CDH organization) celebrated CDH Awareness today. So today we wore teal, or blue if we didn't have teal, and celebrated the awareness. It would have been nice to get out as a family and raise awareness, organize a big walk in our area, but with Liam's condition we just couldn'nt. So I settled for taking pictures of the kids, tweeting #cdhbabies, and walking. My CDH awareness walk consisted of Lanie and me walking the country roads out where we live. We finished our walk just in time because soon after we got home it started raining :) Living out in the country, there wasnt anyone to tell about CDH. Still atleast we feel like we tried to participate.

Lanie and Liam both laughing about something Justin was doing



Liam is actually supporting his own weight here in a sitting position. He held himself up for maybe 30 seconds. Were so proud of him


Lanie holding her brother close



Kisses



What a loving big sister


Liam happily playing in his crib in the t-shirt his Uncle and Tia bought him


Lanie on our walk...We take the golf club incase we get attacked by stray dogs or coyotes or whatever


See what I mean about living in the middle of nowhere


See those tire tracks in the dirt? Lanie said that its from cars that cant stay on the road because they have acid reflux....She was so serious, didnt like it when I laughed


On our walk we encountred many barking dogs, a puddle full of tadpoles, several burn piles and a rabbit off in the orange trees. Lanie thought it was awesome. We sat and watched the tadpoles for awhile and I explained how they grow into frogs. The walk was very fun for Lanie and me. Relaxing. My sinuses are burning now because of all the pollen and dust and my chronic allergies. Id say today was a good day.

Liam hasn't gotten better, but he's not worse either. He has his ups and downs. We get short periods of time where he's happy. Otherwise he's cranky and crying. Last night I finnaly gave him a dose of motrin because it was like he was in pain. He was unconsoleable. We werent supposed to be giving him motrin or tylanol unless he was running a fever because we needed to keep an eye on his temp levels but last night I just couldn't let him continue to be in pain. After a dose of motrin he calmed down and went to sleep. Stayed asleep alittle longer than he has been this last week. Im hopeing that this isnt going to be how it is for the next few years but theres nothing more I can do. I follow the doctors order, give all the meds im supposed to give when im supposed to give them, take him to all his appointments and follow thorugh with everything. Most importantly I pray, hard. Its not in my hands and I would be stupid to think that it was ever in my hands. God is in charge, always has been and always will be. I still dont know exactly what to pray for so I just pray that what happens is for the best and is whats supposed to happen and that God give me the strength and the patience to deal with whatever may come.

Easter's in the Air/ Liams ER visit

Alot has happened since yesterday. Id like to start off with he dun stuff first before we get to Liam's update....

Easter is right around the corner and we couldn't be more excited. Easter means great weather and no longer being stuck in doors. Family gatherings, remember what Jesus sacrificed for us, and the start of all the summer holidays. For Lanie it means hunting Easter eggs, spending the weekend having tons of fun, and candy. This year is special for us. It's little Liam Lambs first Easter! YAY!! And we are deteremined for him to "hunt" his first Easter egg. It also means more photo opps, so lets get started:

We decorated a little bit today. Started with the bunny flag so the Easter bunny knows he's welcome here...



Lanie and Liam decorated plastic eggs....Lanie and I decorated while Liam tried to eat them...





They turned out so cute...



Think someone's obsessed with rabbits??? Naw not Lanie ;)



Then we decorated the tree, making it an Easter egg tree...I don't get it either but it was fun...






We hope you all have a wonderful Easter!






Liam's Update: ER Visit
Liam's been having alot of respitory problems. Weve been having to give him double breathing treatments and even tried adding a different treatment that works like albuterol. Wasn't working. around 5:30-6pm yesterday his pediatrician text me to see how he was and check his sats and breathes per minute. He was 92-93% sat and 63 breathes per minute. He told us to take him to Childrens he was afraid he might have occult pneumonia and the fact that all the breathing treatments we were giving him were good. He was getting too much albuterol. I loaded him up and drove the hour it took to get there. Checked into ER and after vitals had to wait back in the waiting room until a bed opened up. That was the first time Liam had ever had to be in the waiting room, they usually get him right back because of his condition and being so suseptable to viruses. I was scared. We got back into a room and when the ER doc finnaly came in I started to tell him whats been going on with Liam, his medical background and what meds he was on. The man wouldn't let me get through half of it. He ordered an xray, RSV test, 1 hour long continuos breathing treatment and oral steriods. Then sent him home. When he released Liam his breathes per min per 73 and he had just desatted to 89% and sat there for 5 min. Ofcourse I was pissed and frustrated. We're at home, and Liams oral steriod are only 2mls once a day. He's not doing any better. Breathes per min are 63 still and nothing has changed. Our ped is a bit frustrated and this just re-enforced for him that Liam need to get up to UCSF to see the specialist. Thats 4 hours away, in good traffic. Today I was told that he thought Liam needed to go next week. I wouldn't believe what he was saying. He said he'd call up there and talk to Barb, love her by the way, and see what they think. I have no idea how Im going to afford to get Liam up there, and I did tell the doctor that. He was trying to joke around to make me feel better and told me to play the lottery. We had bought a ticket last week, but I went and bought one today hoping that we will win something so we can get him up there. Now were waiting to find out if he has to go up there or if theres something else we can do here for him. Ive stood back from FB today trying to relax, not stress and just spend time with my family. Everytime my phone goes off Im thinking its the doctor calling to tell me what the plan is. My stomach feels like theres a brick in it. Ive just been trying to wrap my head around the fact that my son is so sick but if you look at him he looks perfectly healthy and fine and happy...



Liam is a fighter, always has been and always will be. I just want my son fixed, thats all I ever wanted. I wish I could do better for him. I feel like a failure that I cant just fix him. I know he loves me and in his eyes Ive done no wrong. Unconditional love is amazing that way. Please pray for Liam. Im not sure exactly what for, just pray that the best happens for him. Pray that we figure out how were going to get him up there if thats what he needs. For now we just wait, and we pray.




I just want to sa our peditrician has gone above and beyond his duty to see to Liam's health. He has been absolutly amazing. He's given us his cell and has been there for us at all hours of the night. Hes offered to do home visits after hours when Liams gotten real sick. He's just been amazing and has helped so much and been so understanding. He doesn't lie or beat around the buch with us, just tells us flatt out what he thinks and how he feels. He just an amazing doctor. The fact that he works with other CDH kids in our area so he knows CDH has been such a blessing.

Ive got to hand it to the Surgical team at UCSF for dealing with us long distance. Im sure having to work with other doctors and try to diagnose by only what another doctor is telling them hasn't been easy. They have been amazing in my eyes. They could have just washed their hands with him, but stuck in there. We miss the great team they have up there and me miss our NICU primaries Sue and Cindy but this is so not how we wanted to have to see them again.

God has blessed us so much with the medical team that has worked with Liam. Weve been blessed that he has done as good as he had and that he had got to come home from NICU so soon. Liam is a miracle. Thank you all for your continues prayers for him. Im trying to stay strong. After 8 months its getting hard to hold back all the emotions. I will always be there for my son and I refuse to give up on him. Weve come this far and we have God on our side and Angels watching over us.

Tomarrow is CDH awareness day. Please help spread awareness and tweet #cdhbabies and lets starts a trend. Follow @cherubliam and you can just retweet all the post I made today to make it easy.

Having a rough day **UPDATED**

It’s been a long few days here at the Bryant house hold. Liam has been on both Tylenol and Motrin every 6 hours (getting pain meds every 3 hours) but was still in pain. He also would run a low grade fever, nothing we worried about because we all thought he was teething. Between that and the repertory issues, it’s been horrible. Liam has needed extra treatments the past 2 days and still sounded crappy as well as breathed heavy after. His comfort level was better after the treatment but within the hour he was miserable again. After 3 nights straight of him waking up every 15-45 minutes, I finally said “enough is enough, something’s wrong” and called the doc. Our pediatrician said bring him in A.S.A.P. that he thought Liam might end up having to be admitted to Children’s Hospital but wanted to see him first. I got together my “emergency hospital stay” bag filled with just enough to get me through 3 days as well as Liam’s diaper bag , meds and nebulizer, just in case. When our Ped thinks he’s going to have to be admitted then he’s usually admitted. After he listens to Liam, he looks at me and says “He looks like crap. He’s not looking good at all. His lungs sound bad. There’s crackling at the bottom of his lungs and I think he has pneumonia” He decided to check Liam’s pulse ox (95% BTW) and give him an extra Albuterol treatment. After the treatment he came back in and listened to him again. The crackling was still there, just not as bad but clearly there. At that point it was time to decide what we really needed to do. Since the only way to get admitted is to have his pulmanologist admit him (wasn’t going to happen since we weren’t seeing them until April 30th) or to go through ER, our Ped decided we needed to try to see if we could deal with this as outpatient first. He gave Liam a shot of heavy duty anti-biotics as well as 6 doses of a breathing treatment that works the same way as Albuterol that he is to get every 8 hours and to have xrays taken. The plan is that he will call me tonight as soon as he gets the results from the xrays back to let me know what it looks like and to check on Liam. If his xrays look good then he gets to stay home and we try to treat whatever the issue is outpatient. But if his xrays look bad and proved pnemonia and he’s struggling then off to Childrens Hospital we will go. We are all praying that his xrays are good so that he can stay home. If not, then it is what it is. It’ll just be more paperwork added to his medical file, and another page in Liams scrapbook….

4:30pm After 4pm breathing treatment:
Liam is satting at 92 and 93% were as at noon he was 95%. I left the pulse ox on for 5 minutes waiting for it to go up but it stayed there. His temp is now 99.4 were as at 3p it was 99.1. He slowly declining. Maybe its just the time of day, we’ll see. For now I am off to get things ready just in case.

Please continue to pray for our little lamb. Pray that his fever breaks, that his xray looks good and that his lungs start sounding good and he starts breathing better and satting better. Thank you all


**UPDATE**5:59PM
Just talked to the doctor and Liam's xray is clear of pneumonia!! Thank You Jesus!!!
But....He did say that the xray results yeilded that there is now scar tissue on the lower right lung. Thats where were hearing the crunchy raspy noise. I have no idea what could have caused this. Yes he was intubated for his GJtube surgery but weve had xrays since then and nothing has shown up. Not just that, the intubation tube shouldnt have gone down that far so I doubt it would have been that. This is pretty scary for us because the right lung is Liams good lung and we have no idea why its suddenly growing scar tissue. So now we just keep a close eye on Liam and if he gets worse we call the doctor. Our ped wants us to check in tomarrow to make sure Liam is still doing ok. If only Liam could talk to let us know whats wrong.

Liam Update

I had this whole speal typed out and decided to scrap it and just updated about Liam since it was just so negative.

Liams doing ok this afternoon. He got really sweaty earlier but wasnt running a fever. Its proof that hes breathing harder than he should be. If I take him to the hospital Im just going to be told that this is how hes going to be for awhile, in constant respitory distress and that theres nothing we can do for him. I cant stand hearing that and am frustrated. If only we could get him up to the specialist in SF and see what they have to say. I thought the hardest part was over when we initially got released from UCSF. Nothing they did or said could prepare us for all the hospital stays weve had and will end up having. I dont want to contact the NP via email just to have her tell us that the only way they can do anything or give a diagnosis is to take him there. Its something theyve told us before. I would love to be able to take my son to them everytime something goes wrong but the sad truth is we just cant afford it. Weve thought of moving to SF but that was squashed because of the cost of living. All I can do is continue to pray that we are doing the right thing and that God is watchiing closely over Liam and guiding his doctors on the right path. This is yet another test of our faith.

Venting

Ive been completly irritated and pissed off for the last few days, 4 days now I believe. Im so frustrated with everything. I feel like Im doing it all on my own and raising 3 kids instead of 2. I dont want to go into details, I just need a chance to vent. To top off all my other frustrations, Liam had a bad night last night. He was up most the night. I think I only got a max of 45 min of "rest" at a time last night. at 11:25a Liam was breathing heavily retracting and satting at 86% so I had to give him his noon breathing treatment early. 20 minutes later, no change. I had to give him a 2nd treatment. Finnaly he started satting 96% and above and was no longer retracting. He's still coughing alot but he has been for weeks now. Im just waiting to see if were going to have a repeat of double treatments at his 4pm treatment. If so, it'll probably be time to call the doc up and let him know whats going on. My world is so full of stress. Liam provides his own unique brand of stress to everything. Here we are trying to move back into town, but my husband has issues with change so it's stressful dealing with that alone. Miss Lanie always asking when shes getting her new room and saying shes packing up her room hasnt helped. All the appointments. I just cant wait for the day when things calm down. Im sure my blood pressure is pretty high right now. Im sure things will calm down alittle soon, atleast I hope so.

A Week! A Week! Its been a week!

Weve officially been home from Liam's 6th hospital stay a whole week now!!! It's been both a blessing and a curse. We depserately needed time as a family at home. Both Liam and I needed Lanie more than words could express. She makes us laugh and tells us "everythings going to be fine". She like the shinning sun in the sky, burning bright and unignorable where as Liam is more like the stars, twinkling suttely. We have yet to take him to church, or anywhere else for that matter because we are so scared he's going to catch something and end up back in the hospital. I know your not supposed to live your life in fear, but this is more like being careful for Liam's sake. He needs to stay home so we can get a physical therapist out to work with him as well as move back into town. Being home has been a blessing because Lanie has kept us smiling and laughing. I missed her so much while we were stuck in the hospital and she wasnt even allowed to visit. We'e been able to get a few things done like looking for a place in town, getting moving boxes, have Bright Start out to work with Liam, and get the corract feeding pump for Liam for starters. A curse of sorts because we are pretty much confined inside, haven't been able to do any realy visiting with family or friends. I am still glad to be at home. It been an interesting week with the kids. Liam's been learning new things everyday and becomming more active again. Liam has also been teething, which hasn't been very fun for any of us. He's been getting really cranky and fussy right before his breathing treatments were due and were thinking he was struggling to breathe because he was better after his treatments. Weve been checking his sats with the pulse ox I bought off ebay and he hasnt satted any lower than 93% everytime we've checked. As of yesterday afternoon he's been alittle less cranky. He had coughed up a wad of mucus and I think thats what he needed. Some days seem really good and others no so much....


Liam's Froggy Face:


One minute he's happy and playing:


And the next he's crying (hehehe blackmail for when he grows up):


Teething is a huge contributor:


And he chews on EVERYTHING:


He plays tricks on us, like purposely dropping his paci out of the crib then crying until he sees you above him then he laughs at you...cought in the act:


He's not even ashamed:


Lanie has been such a big helper trying to keep her brother happy:


"Reading" him books, she has a picture perfect memory, remembers the story compared to the pics:


Sometimes Liam listen, sometimes he doesnt:


But it doesn't stop Lanie from trying to entertain us:


Today has been a better day. Liam has been playing in his crib and has been mostly happy:


He looks so cute in the outfit Kristen and Reba got him for the baby shower:


We can't get over the odd way he twist his legs:




Liam's not the only one that twist weird ways:


But we love him too:




Liam has been a silly boy today:




Ill take smiles any day:




Being by the open door was the closets thing to going outside he was getting today:








Lanie however had a blast outside soaking up sun and driving her jeep:






I have been able to get a few bows made this last week, something that I havent been able to do in awhile:


The best part of the last few days though has been reading to both my kids. Yesterday we ready 'Bicycle for sale' and 'Hello Baby'. Today so far we've read 'Mickey Mouse and the pet show' and 'White Rabbit's Color Book'.







And we're so very happy that spring is here:




God is good and has blessed us