Liams Getting Chubby Rolls :)

Liam's feeding are going better. His pump feeding anyway. Before it was taking 2 hours for each feed only leaving an hour before the next. Last nights 4pm feed I was able to bump it up from 40ml's per hr to 60mls per hr taking only 1 hour and 20 min for the feed. Ive been slow to up his feeds because I was scared he would start retching and throwing up alot. Thankfully that hasnt happened. Today or tomarrow we will try to bump his feed up to only an hour. With the addition of some solids he has been visably gaining weight. His little cheecks are getting so chubby. So is his arms and legs. Its so cute. In addition, to my suprise, Liam is actually starting to gain a normal baby belly! Its starting to actually be paportioned to the rest of his body. Which is something I thought would never happened. I always thought his waist would be smaller, leaving his pants to forever be saggy. He is also starting to grow out of some of his 0-3 months, which for me is exciting because he had alot og 3-6 winter clothes that I hate for him not to be able to wear. On another note we're back to keeping the kids seperated. Lanie isn't feeling well. Shes all stuffed up and her ears are infected. I hope it's just her allergies but I have to play it safe. Liam has been in uur bedroom hanging out. He's curently taking a nap in the bassinet. Thankfully he does alot better when he's in there in the darker, quieter room. With the tv noise and the light in the living room he just get overstimulated. It's a good think he likes his bouncer and the portable swing because I couldn't fit a regular baby swing in that room. I took Liam's pictures yesterday in the outfit hi Uncle and Tia got him for Christmas. He looks so good in blues and browns lol.

Learning Curve

Everyday is a learning experience here at the Bryant household. Either Liam is learning a new "trick" or we're learning something about him. Today Liam has learned he has a voice. My sweet quiet boy has become a very expressive baby. He has spent the day screaming a high pitch scream then smilling at us. I love that my little man has learned to use his voice and I love hearing it. After not being able to hear his sweet little voice for what felt like forever, I cherish all his sweet noises. With that being said, my ears are killing me and my head is throbbing. His very beautiful sweet high pitch scream has taken his toll on my head today. I had forgotten all about this stage that most all babies go through. That or I just figured Liam would never get there because up until today his voice has been soft and quiet. Still I am going to cherish every single little cry, scream and shriek that he decides to make. Even if it means my head feeling like I was hit with a sledge hammer. No matter how bad I hurt when he screamed today I smiled at him and told him he was doing a good job. I didn't lie to him. He is doing a good job learning his voice and different pitch's. I think about his sweet litte voice everytime he has to be re-intubated, like for his Gtube/fundop surgery. I was so scared that they wouldn't be able to excubate him and that it would again be awhile before I got to hear his voice again. In january we have to take him to the polmunologist so they can do another xray and ultrasound of his lungs. If they don't get the answers they're looking for they'll have to do a CT scan. Because you have to be very still for a CT and babies aren't at all still they will have to put him under. When they put him under they will intubate him again. They don't want to do that unless they absolutly feel they have to because everytime they do his lung colapses. Everytime he gets intubated there is always a chance they wont be able to excubate him. Not being able to excubate him means we won't be able to hear his sweet voice. When youe babies are screaming and you'd do anything for them to be quiet, just keep in mind that some parents would give anything to be able to hear their babies voice. Even if they're crying or screaming. Every cry, every scream is a blessing and hope for parents who's babies were intubated at birth and struggling for life. Everytime you think you've had enough, remember theres parents out there that would rather have a screaming baby than to have lost their precious child. This situation with Liam has opened our eyes to a whole new world that we didn't even know about. So instead of being fed up with Liams screams I cherish them. Instead of wanting to scream myself after having sleepless nights, I cuddle my son and we take a nap together. Most parents would probably be upset if their child had to have a Gtube to feed. Me, I know the alternative for Liam. I couldn't care less about the Gtube because that simple little device is allowing my son to get nutrition and grow. Without it, it would mean hospitalization, IV's and watching my son struggle for life and possibly death eventually. When you've gone through what we've gone through, you'll take what you can get. Cherish your babies. Hold them close and love on them. You should thank God daily your babies are healthy and happy and that he blessed you with them. I know i've gotten a bit side tracked in this blog and that it seems I always do that, but I feel some things should be said. I read blogs daily on other CDH babies journey. Just last night I was reading one where they lost their little girl at 5 months old back in August. They never got to take her home. While reading her blog, I read her struggles in getting over the loss of their sweet little angel. My heart went out to them and I cried. I couldn't help myself. It's part of survivors guilt

Harley Bucket

This morning when my father in-law went out to feed the dogs, he found Harley had passed on. Harley passed some time during the night. He was an 11 year old boxer who had survived cancer on his ears. He was a good dog. He was practically blind in the end and was loosing his teeth. The last few days he had been acting strangely as well as been hardly eating for a while now. Harley was a good dog. I remember when we took him in the camper with us. He was anxious and out of his element. We had woke up to one heck of a stinky smell. Turned out he had been trying to go outside to poo and just couldn't hold it any longer. There were other times when we brought him inside the house on cold winter nights to sleep in our room with us. The dog would get up on the bed and try to sleep between us. We allowed it until he stunk up the room with his gas, then he was banished to the floor. Harley was a very gassy smelly dog. He drooled and slobbered all over us but he was a great dog. There were always little birds in his dog run with him. They helped eat his food and he never bothered them. Harley is now free to run as far and wide as his feet will carry him up in doggy heaven. He never be in pain and he will never be unhappy. Rest in peace Harley Bucket.

A Blessed Christmas

Christmas morning started at 6:30 am me. I laid there in bed waiting for my family to wake up. Finally at 7:30 am my husband got out of bed. I decided then it was time to wake up Lanie, the anticipation was eating away at me. Five minutes later I was able to gently stir her awake.
“Is it Christmas yet mommy?” her sweet little voice asked.
I couldn’t help but smile. She was barely able to keep open her eyes. Her smile was a slow tilt of her lips.
“Yes baby girl, it’s Christmas” I told her.
“Did Santa come?” Her eyes starting to open wider.
“Let’s go see” I smiled at her.
We laughed and jumped up out of bed, ran into the living room. She saw a big red box and a full stocking. Her eyes lit up wide.
“Is that for me?” She asked in aww.
“Yes it is. And guess what. Santa ate his cookies and left you a note” I smiled.
“He did?”
She ran over to the kitchen. Looked up on the counter. All that was left was a few crumbs, an m&m. I picked up the note. Read her Santa’s note:
“Your cookies were delicious,
The best I ever had,
May your Christmas be Merry,
May your New Year be joyous.
My reindeer are thankful,
Overcome with joy you see,
For you thought of them,
During our long nights flight,
Keep up the good work,
And next year will be great.
-Santa”
The cookies were gone. The celery we left the reindeer was nowhere to be seen. My little girl jumped up and down with joy. The joy Santa brought her was un-comparable by far. The magic he brought her left her with memories that will last a life time. So when she opened up her presents from Santa and found what he brought her, she smiled from ear to ear.
“He brought me LaLaLoopsie, he brought me a BIG LaLaLoopsie!!” she exclaimed.
We loved to see her smile. Loved to see her so excited. We felt amazed and humbled that we were able to bring those smiles and laughs to her face. We watched as she opened up her gifts. Watched her excitement grow. We saved the best for last. She opened up box, her eyes grew wider than ever. Her jaw dropped to the floor. Without warning she screamed, jumped up with joy.
“Oh my gosh oh my gosh!!!” She exclaimed. “It Rapunzel’s tower! This is the best Christmas ever”
I laughed so hard my stomach hurt. I wish I had been recording it because we could have won a million dollars.
Liam finally woke up at 9:00 am. We let him sleep because he had been so overwhelmed from yesterday. Lanie gave him the gift she bought him. Justin held him and helped him open it. Liam grabbed the wrapping paper and was actually able to rip it because it was loosely taped. He got his 4 little cars, all bright and perfect for him to hold. He smiled and jibber jabbed. Then I sat him on my lap and we opened up the one gift we had bought him. It was the fisher-Price zoom race track. It lights up and makes noise. I thought it was going to be perfect for the 4 of us to sit around it and play. I put it together then we sat there to play. Within seconds he was over stimulated. His head went side to side, almost looked like convultions. Justin and I looked at each other, then we turned it on one more time. He did it again. Then he got sick. It’s too soon for his new toy. We have to stick with stuffed animals and things that don’t light up and make lots of noise. The only other set back we had today was the fact that the tree broke and fell over on us halfway through Lanie opening up her gifts. I had been sitting next to her and caught the tree so it wouldn’t fall on her. Justin had to find away to fix it. Still we didn’t let those two incidents affect our Christmas. We spent the day laughing and playing. Just being here together was the best day ever. We felt so blessed to have both our kids home with us. We thank God for the miracles he has given us.

The Bryant's Special Christmas Eve

Christmas at the Bryant's was very special you see,
We had a special gift,
The best you'll ever see,
Our little package bundled tight,
Smiling laughing giggling,
God blessed us with a miracle,
A fighter to be true
For our little one has done so much,
Our Cherub here on earth...

Family gathered ‘round the tree,
Cookies, Food, and Special Treats,
Love abundance everywhere,
A night special in our heart…



We laughed and Joked
We smiled a lot...

The gifts were piled up so high,
The children just couldn’t wait...

Bells were ringing outside the door,
Whatever could It be?
No other than the man in red,
Surprised the kids indeed...

Our special night comes to an end,
All our guest head towards home.
The stalking are hung on the entertainment center with care...

The Raindeer will be happy for their treat
We are sure...

Cookies for Santa
Made just for him
Sitting on the counter
Waiting to be had...

Time to say goodnight
All the good little kids
For tomarrow you’ll wake up
To surprise’s for sure...

Merry Christmas From the Bryant’s

Santa's On His Way

The minutes until Christmas are counting down. The kids are in bed, fast asleep and I'm getting anxious. Tomarrow is our big family Christmas. At one point I was dreading it, just wishing it was over and done with. I was sad because I couldn't take Liam out into public and see Santa for his first Christmas. It's a tradition that we always see Santa and take pictures with him. There hasn't been a year since Lanie was born that we haven't. I got a call the other day and we're are to have a special guest tomarrow night after dinner. Santa will be making an appearance at our home. It will be the very first time Liam gets to see Santa and the first time Santa has come to us. This will for sure be a very rememorably Christmas. Probably something that I'm going to want to continue. The kids don't know that there's a suprise comming for them. I however have a rush of adrinaline and anxiety just waiting. I don't know if I'll be able to go through all day tomarrow and then dinner before Santa shows up. Our very special secret Santa is being played by Uncle Johnny. It is so very sweet of him to take him Christmas Eve to spend with us and to don the big red suit just for my kids. I don't think just simply saying 'thank you' will ever be enough. Nor will a simple 'thank you' measure up to the memories he is creating for both my kids and myself. I will be dragging out the old camcorder and making sure my digital camera has plenty of batteries so that I can capture these memories to keep forever. Growing up my Nana had huge Christmas trees, tons of gift, family and alot of food. So many special memories for me but this, having Santa come to us in our home makes these memories more special. Finnaly, my kids are having a Christmas thats even better than any I ever had. All because of Santa. Our Christmas miracle is having Liam home and still being able to show him Santa.

Overcome

Today was just one of those days that everything was going wrong. I woke up feeling really horribly sick, still praying it's just my allergies from having chronic allergies. Lanie was cranky and whinny upon waking up. She almost refused to get out of bed. Liam woke up at 5 am and puked then went back to sleep. Everytime I got so far cleaning Id have to go back over what I already did. Then as I was washing up some dishes the sink completly clogged up and backed up. Justin had to go in take the plumbing apart underneath the sink and try to unclog it. When that didn't work he had to go outside, get under the house and work from there. It took an hour and a half to get it unclogged. The whole plumbing sytstem from the kitchen back to the laundry room/2nd bathroom was clogged up. After it got unclogged it took another hour to clean up the mess. So when I got the mail today and saw a card from our UCSF family the Spence's I was thrilled. It changed my mood from being really crabby and mad to happy and excited to see what was in the envelope. I opened it to find 2 xmas cards one with the handsome Dillan with an ice cream cone and drinking milk and one with the beautful angel baby Maddie. Tears threatened to spill out at the sight. I missed the Spence's and Dillan. I have also been dealing with the loss of Maddie alot lately. I know it seems weird, after all before we got to USCF we had never even known the Spence's. It stems with being the same room with them just our two babies, together fighting for their lives, and us as parents sitting at the bedsides watching helplessly. I can't look at Liam and not think of sweet beautiful Maddie. So when I saw the beautiful card of Maddie it took alot of restraint not to cry. I was both sad and happy at the same time. Sad that she's gone but happy that now I have a tangable picture that I can hold and look at everyday, something to set with her angel memorial. These cards meant so much to me. They changed my bad day into a good day. Again I know that it's weird that I would be grieving over a baby that wasn't my own, but there is some sort of logic behind it. Everyday I sat at Liam's bedside, they sat at Maddies. Everyday we would ask eachother how the babies we're doing. We would celebrate the steps forward and give encouragement for the steps backwards. We would also give space where space was needed. We became so close that my family would ask how Maddie was before they'd even ask how Liam was doing. There wouldn't be a converstation where someone didn't ask how Maddie's progress was going. It became a given to automatically give a progress report on both Liam and Maddie without even being asked. The Spence's just became part of our family like we'd always known them. It wasn't uncommon for us to talk to each other from across the room and smile and chat with the nurses. It seems like somewhere along the way I started thinking of Liam and Maddie "together". Not as in together as a couple but just couldn't think of one without the other. The lines became blended. I remember sitting there one day thinking of the future for Liam, just hoping there would be a future. I thought of how great it would be for both Liam and Maddie to be released and how they would grow then how our first play date with them would go. Both Liam and Maddie crawling and trying to walk while Lanie and Dillan ran around playing. I never once thought it wasn't a possibility. I always thought we'd have the chance. To get to my point, I feel guilty. When we got to hold Liam for the first time, it was bitter sweet. Sweet because I wanted so badly to have him in my arms. Bitter because the Spence's had yet to be able to hold their beloved daughter. I didn't feel it was fair but didn't know how to express those feelings. I feel guilty for everything Liam is getting to do but Maddie didn't. It's not something I have said outloud yet, it's a secret I carry heavy on my heart. I am only barely admitting to it. I am hoping to overcome this guilt. Another thing I have been reluctant about is the fact that I will be starting therapy on the 5th. I've admitted to be depressed and having PTSD. I've admitted to taking meds to help me but for some reason it is hard for me to admit that I will be seeing a therapist. Hopefully with the help of the therapist I can overcome my guilt, PTSD and depression. Somewhere in my brain I know that I shouldn't feel guilty, that it wasn't my fault, that it was God's decision but the majority of my brain is blameing myself. It's telling me that Liam is here because Maddie's not and I know thats illogical and wrong and not how it works.

Scheming and Planning

Christmas is almost here. If you count today over with then we only have 2 days left. I know I should be happy, after all I have alot to celebrate. My son is as healthy as he can be having CDH and his other issues and he is home with us where he belongs. My daughter is healthy and happy and a joy to be around. My husband has been helping with all the household chores and taking care of the kids. We were even able to get the kids, mostly Lanie a few presents and give them a good Christmas. So why aren't I excited? Maybe because I have a long list of things that I have to get done before our family Christmas on saturday. Maybe because I'm sick with my chronic allergies. It never fails to happen, right before Christmas I always end up sick because of my sinuses. Ive spent two days in bed resting and popping allergy pill after allergy pill. You'd think that with all the allergy meds I have to take that I wouldn't get sick. I mean singulair, benedril, nasonex and an eye drop should cover all the basis. But no Im not so lucky. Thats not why I'm not excited, or atleast not the full reason. I should be excited to see the kid's faces when the open up their presents. I should be excited to open up the toys and help them play with their new toys, but I'm not. Im thinking about all that trash that I'm going to have to pick up. All those little peices that will probably go missing within a few hours upon opening the packages. Maybe it's the lack of decorations. When I was growing up my Nana had this huge tree that went from floor to ceiling and the ceiling on her old house was probably a 25 foot ceiling if not higher. We had to use ladders to decorate the whole thing. Our tree is about 5 feet tall with a 10 inch angel on top. It's skinny and pales in comparason. I pray one day Ill be able to have a house that can handle a tree that is half as good as my Nana's for my kids to see. I really should have decorated more, wish I could have decorated more but the lack of decorations and cash on my part prevented it. We didn't get to take Lanie to look at lights this year nor have we taken the kids to see Santa. Liam can't go out in public to see Santa so Lanie ends up suffering. It'll be the first year that I havent been able to take her and get pictures of her with him. I feel bad that she is missing out but am so very thankful that she hasn't complained once or asked why. She just takes most things as they are. I have a whole year to plan next years Christmas and Im hoping to make it big and rememorable for her and Liam. They deserve it. I get that there are things we cant do this year and things that we as parents have to go without. I knew that going into parenthood and I'm perfectly comfprtable and accepting of that fact. What I will not do is allow my kids to go without. I know this year they aren't really going without, but I want to make up for this years minimal Christmas and make next year big and wonderful. Not neccesarilly with gifts but with decorations and activities. If I have to get someone to dress up as Santa and come to the kids I will. As Im writing this and scheming in my head, I am getting excited. Tomarrow we're going to bake holiday treats and raindeer food with family to get ready for saturday. Lanie has a suprise waiting for her that she knows nothing about and I cant wait to see her face. I will be happy when the holidays are over but I know things wont be calming down because visits for Liam are starting up and appointments and a whole lot to do. Im just doing my best to take it a few hours at a time and enjoy the here and now.

Liams Scare Tactic

At 11a I went to wake Liam up for a bath and diaper change. My worst fear seemed to be comming to fruition. Thank God above that it actually wasn't. Liam was so sound asleep that he didn't wake up when I started talking to him. He didn't wake up when I unbunddled him. I couldn't see his chest so I started to worry. Thank Heaven for my meds because I was able to stay calm even though fear wrapped its ugly hands around my heart and mind. It turned out Liam was just sound asleep. When I picked him up he woke up and smiled at me. If I didn't know better id say he did it purposely lol. I don't like the scare but am glad thats all it was and that I didn't freak out. Thank you Jesus!

Feeding Solids

Liam had his first taste of solid food last night starting with rice cereal. I was pleasantly suprised that he didn't spit the food back out at me, instead settling for a dirty look before swolling. He ate about 15 to 20 bites before I saw signs that he was tired and done. I fed him again around 11 am this morning. He took about the same amount that he took last night and still giving me dirty looks. Tonight I tried again. He only made it through 10 to 15 bites before he became severely aggitated and started yelling at me. I also noticed tonight that he wasn't immediately swollowing the food. He just held it in his mouth while he jabbered for awhile before swolling, but eventually did swollow. It seems like he is already starting to regress. I could feel the dissapointment in myself and the failure that I was doing something wrong. I know that it is entirely stupid for me to be feeling this way since these CDH babies just have these issues. No one know exactly why they refuse to eat or have difficulties or if they do I haven't been privy of the answers. I know I just need to keep trying and not give up. Liam will do better as long as I keep trying but if I give up now he'll never have a chance to prove himself and he he deserves the chance. My love for him hasn't lessoned, if anything my love only grows with every challenge we face. This is an amazing journey we have found ourselves on.

Biotinidase Defficeincy

I took Liam to the doctor today. We retested him for RSV since he's been so stuffy. He is negative and his lungs sound clear so we are just going to continue to suction his nose, use vicks and the humidifier. He also got his second round of centages to help protect him from RSV. Liam 2nd biotinidase defficiency test came back positive for a medium case so we just continue to give him the biotin twice a day everyday for the rest of his life. The biotin is what helps break food down so you can use it properly. Without the biotin Liam would vommit, continue to be failure to thrive, it could cause seizures as well as heart attacks and eventually he would die from lack of nutrients. Its amazing that this one little pill prevents that, just a simple vitamin. Biotinidase defficiency is rare, both parents have to be carriers for the child to have it. Because Liam has this we will have to get Lanie checked too. It is possible that she has a partial defficiency
and that it isnt yet causing problems.

I Wish I Was More Like Her

Today we got a xmas card in the mail from CHERUBS and she asked what it was. I told her it was a card for CDH kids. She said she didnt want Liam to be a CDH Cherub that she just wanted him to be Liam Michael. My heart broke. I too just want him to be Liam Michael but it won't change the truth that he is a Cherub. I tried my best to explain to her that the doctors fixed him and he's fine now. That yes even though he is a Cherub he is still Liam Michael and will always be Liam Michael. She's a very smart kid and she understands alot. She has seen the pic from Liam's fundo and understands that they fixed his tummy. What she doesnt like is that her brother is different. She doesn't want him to be a Cherub when shes not a Cherub. She wants them to be the same. I explained that I am very happy that she is not a Cherub and that if I could have changed the fact that Liam was born sick I would have but thats not how God works. I explained that God choose her to be our daughter and that she was very special then God choose Liam to be our son and he too is special. I explained that we're all different and that no one is exactly like someone else. You would think that a conversation like this would be too hard for a almost 4 year old to grasp, but not Lanie. She's very intelligent, beyond her years. When we had her in NICU with us, she never once freaked out. At first she thought thats how all babies were. We had to explan to her that not all babies have to go through what Liam and the others there went through. We explained that they were all sick and that the nurses and doctors were making them better. She actually thought Liam's stat monitor was his own personal video game. We all had laughed then explained that the screen showed his heart rate, breathing and what not. She thought it was pretty cool. She never once was afraid to reach out and touch her brother. We never let her see him while he was on ECMO, it was far to scary. After he was off ECMO and the day he had his repair sugery she got to meet him for the first time. She was so excited. We lifted her up and sat her in a chair to see him. She asked if she could touch him. After we said yes she just sat there holding his hand and talking to him. It was amazing. She was never afraid of her brother or the tubes and wires comming out of him. She asked once what they were for and when we told her they were making him better she just smiled and said ok. The only time she ever got upset was at Valley Childrens Hospital when Liam started balling when they were trying to insert an IV. She was mad at the nurses for hurting her brother and making him cry. After that she was very protective of him and would always ask the nurses when they were at the bedside if they were going to hurt him again and what they were doing. I am very proud of my brave little girl. She has handled the entire situation with Liam better than any one. The one time I dared to look sad around her she walked up to be, laid her head on my shoulder, patted me then said "Its ok momma. Liam's fine, he's going to be fine". I wish I was as brave and strong as my almost 4 year old baby girl. Her strength, intelligance and imagination astounds me.

Outlets

Ive been doing alot of reading lately. This month alone I think Ive been through 3 maybe 4 books and its only the 15th. I think it's helping me to be sane. My normal crafts werent helping me and I seem to have lost interest in the normal thing I used to do. Ive been trying new things in hopes to find something but so far nothing. I'd scrapbook more if I had the money. I'd run if it wasn't for my asthma. I have tried a few times to sit down and write more for my fiction book but haven't had the heart. I've always wanted to do archery, for about 10 years now anyway, but have never tried. I think it would be a good outlet for my aggression and anger. I could shoot a target and get satisfaction plus it takes some physical strength. Im open to doing new things. I knew bringing Liam home and caring for him wouldn't be easy. I knew he would take alot of work, and I was prepared to do whatever it took. What I wasn't prepared for was the anger that would sneak up inside me. Anger at why Liam's condition wasn't cought in utero. Anger at why Liam was chosen as a Cherub. Just anger at it all. I didn't realize how much I stored away and bottled up while I was at the hospital with him. Now that we've been home for a month its starting to leak out. I'm not taking my anger out on anyone. I, like any other parent with a Cherub, want to know why. Im just trying to find our way through it all. Atleast theres hope for the future. Im trying to be optimistic.

5 Months Today

Five months ago today our crazy scary journey into the world of Congenital Diaphragmatic Hernia, CDH. Liam is our little miracle in everyway. There was a very short few moments sitting at his bedside at ucsf when I wasnt sure he would make it but I never stopped praying. I thank God everyday for our miracle baby. Today Liam is lounging around the house in Christmas jammies. We're gathered in the livingroom watching tv as a family and playing with Liam. Lanie bought her brother a few cars for Christmas and is wrapping them all by herself. Were extremely happy to just be together at home, the 5 of us and our 2 cats. If anyone is wondering how we can have 2 cats with Liam its because our cats stay away from him. It takes alot of work vacumming, dusting and making sure theres no hair on any of Liams stuff. And so far hes not allergic to them. Lanie has been wanting a puppy but were not ready for anymore on our plate right now. Today is a small milestone for
Liam but for us it feels so big.

Rough Night

We had a rough night last night. Liam has colic and a really bad cough. I couldnt put him down at all last night because he would just cry. I held him close and rocked him all night long. Patted his back to try and help the gas come out. He was in so much pain. He cried, I cried. I kept praying that God would give us both a break and allow him to sleep so I could sleep but it never happened. I felt forsaken, forgotten. Im not understanding why God wants me broken or mad at him. Im not sure what ive done to pissed him off but id really like to know. I was up for 24hours straight. Ive only slept 2hours straight then an hour here and there today. I know tonights going to be bad. I need rest. I need strength.

doys go by

More and more days go by where I sit in a dark room with liam. He sleeping but I find I dont want to face the world. I have to fight for everything when I do and im ashamed to admit that im too drained. Its a good thing theres nothing liam needs me to fight for this minute because I need a break. I dont want to face the disaster my life has become or the hard feelings that are wrapping themselves around my heart like a boa constrictor getting ready to feast. Letting go and moving on is extremely more difficult than I ever imagined. I still blame myself for liams condition. I still feel horrid for not being able to be at him side those first 2 days of his life even though theres nothing I could have done recouvering from a c-section. I feel so guilty for then not being able to be there for lanie for those 6weeks until she got there. I dont know when the guilt is supposed to stop. I dont know when ill be able to tread water and keep my head up in the black
sea of guilt and despair.

feeling alone

I feel alone. I'm getting no help. I alone do all of liams daily care with no help. Im not even getting help going to pick up things like diapers. I do it all & have to take liam with me. Hes not supposed to go out. I wonder what the point is even being married when you have no one to help you shoulder the work & pain of it all. Everytime i ask for help i get excuse after excuse. I never get an offer for help nor a "sure i can". Im not resentful toward my son. Im resentful to the one person who is always supposed to be there for me and help me but never is. Its always an argument. I should be able to take time for myself and be by mysellf but i dont get that. Until liams is pottytrained and has no gtube i will be the one doing it all because he isnt easy and therefor isnt fun. Nope i get all the shitty work and none of the fun.

I took Liam to the doctor today. Dr Coverston thinks he has a stomach virus and is constipated and teething as well as lactose intolerant. Today was the first time in 2 days Liam was able to handle the formula and it was soy. I started the formula at 2p and he went all day without retching or throwing up. However tonight he spit up half an oz then 45min later projectile vommited about 20mls. That was at 10:20p. Now he's just kicking back trying not to fall asleep. Other than that incident he's been doing great. I know he will cont to throw up now and then because of the stomach virus but i hope aside from that he will be fine. Dr Coverston said he would call me tomarrow to see how everything went. Liam weighted in at 11lbs 2.5oz. Thats only a 2oz gain in a week and a half. Also found out ucsf had me mixing his formula way wrong. They said 4scoops to every 5oz. Thats thick stuff. For 30cal its supposed to be only 1.5 scoops every 2oz or 3scoops every 5oz.
We had to run bloodwork to make sure he was ok and he .

Poor liam had a rough night getting to sleep. He cried so bad. It tool an hour and a half to calm him down and get him in bed. He has a tummy ache, teehting and constipated. I feel so bad for him. We have him tylanol and when that didnt help some baby oragel. Then son prune juice and laid him on his belly. I really hope he gets past this.

Strained

Liam has been retching for almost 2 weeks now. Everyday its been growing worse and worse. Last night Liam started throwing up, something we thought would be virtually impossible until he grew alot older because of his Fundoplication. I text the doctor and he was put on pedialyte as of last night. He only had pedialyte all night long. This morning when I tried to start the formula again he puked 45min into the feeds so we had to go back to pedialyte. Tomarrow morning we will be taking him to the doc to be checked and to see his weight. Hopeing it does turn out to be something simple like maybe a sudden build up of lacktose-intolerance but its doubtful. Things just keep getting worse and worse. I feel as if God has taken a personal investment in my pain and misery. I'm struggling more and more with my faith. Theres so many things that just keep hitting us back to back. We just cant seem to catch a break. Our truck broke down earlier this week and we just had to come up with $1450 to get it fixed. CCS has denied liam's formula, genetics visit, and a few other things. Its getting ridiculous. I don't even want to go over everything that has happened lately its so depressing. The stress of dealing with Liam's health and everything involved with that is putting a strain on us. We just need to catch a break somewhere.

Bryant Family Trivia

1)Although there are 4 of us our birthdays fall in only 2 months. Justin is the oldest adult and Lanie the youngest child and both theyre birthdays fall in Febuary. I am the youngest adult and Liam the youngest child and both our birthdays fall in July.
2) Both kid's birthdays come before the adults birthdays.
3) Justin and Lanie (oldest) have blonde curly hair and blue eyes while Liam and I (youngest) boths have straight brown hair and brown eyes.
4) Lanie's original due date was on the 14th of the month which is Liam's birthday.
5) We named both kids after either a character in a movie or a movie actor. Lanie from "Shes all that" and Liam after actor Liam Nesson.
6) We named Liam after Liam Nesson and Liam ended up needing a procedure done called a "Nesson Fundoplication"
7) Lanie was born 19 1/2" long and Liam 18 1/2" long.
8) Lanie's middle name Andrea is for both her Grandpa and her Uncle
9) Liam's middle name is Michael. Both Justin and I have uncle Mike's.
10) Lanie and Liam are polar oposites of each other. Lanie is light colored and outspoken, only pretends to be shy. When she was a baby she cried alot. Liam has the darker coloring, is quiet, shy and hardly ever cries despite everything he has been through.

Change

Another day has passed in the Bryant household. Things aren't getting better. The stress is taking a toll on me mentally and physically as well as strain relationships. Liam is retching even more and is constipated therefore he cries more. Lanie has been begging for attention. No matter how much we give her it doesn't seem to be enough. Thats the jealousy of having a baby brother though. I don't blame her. So today I played with her, helped her clean her room, read to her and watched cartoons with her. Liam did sleep a bit more than normal today so I took advantage of the time. It doesn't ease the heartache or the strain though. It's still there ever present. I just wish something good would happen. I don't know what nor do I really care what. Something needs to give, something needs to change. We can't continue this way for the rest of our lives. Praying these dark clouds open up and let the sun shine through. Our souls need some sun.

Struggling

I'm struggling with the trials God has set in front of me. I'm an emotional wreck, barely holding it together most days. Yesterday was one of those days where I had to fight to keep it together. After a full day of struggling emotionaly and two nights of insomnia God decided to lay out another trial. On our way home while on freeway 198 our truck broke down. Justin, me and both kids were in the vehicle. We were in the fast lane, had just gotten onto the freeway and in the fast lane passing demare exit when the transmittion blew. Litterally. It was a loud emplotion. I'm not someone who knows vehicles but I knew instantly it was the transmittion and that the truck was done and we wouldn't make it home. Sure enough, we lost every gear we had. We coasted to the slow lane then into the break down lane and finnaly the truck just stopped and wouldn't move an inch. I was close to loosing it at that point. The stitches were slowly breaking away. Alas there was a miracle. As soon as we pulled over a highway patrol was there with lights on. He pushed us to safety off the freeway. We waited for my brother in law and nephew who came to take us home. We waited for a tow truck, thank God we know someone who has one. We had alot of help from alot of people. It was a miracle. In a way it was like God was trying to tell us that things will get bad but that he'll always be there to watch over us and keep us safe. Atleast that's how I'm viewing the whole ordeal. We did make it home safely. Now the truck is sitting in the shop with a diagnosis of $1400 to fix. Pretty harsh considering the current circumstances. I know God provides and always comes through. In the mean time I get to stress and worry about what we need to do. I'm just struggling with everything. The stress of Liam. Im the only one who knows his meds and med sched as well as his feeding sched. Im the only one that can calm him down and the only one who knows exactly what he likes. He likes to be held a certain way depending on if he wants to play or is tired or hurting. Everyone gets to have all the fun with him. They get to play with him, love on him then hand him back over. I get to administer meds, made his 30cal formula, change shitty diapers, give baths and wipe away his tears. 90% of my time consist of taking care of Liam's "special" needs. On the outside he looks so normal. No one really gets to see the "behind the scenes" stuff. No one, not even Justin sees me up all night administering meds, adding his feed and changing diapers. I am the only one in this house that doesn't get sufficient sleep. Even Liam sleeps through it all. Liam isn't even the only kid I have. I still have my 3 year old to care for....two cats, 2 fish, laundry, dishes and all that jazz. I don't have 5 minutes to myself unless its between the hours of 1am and 6am. The only reason I have that is because I developed insomnia along the way. I kid you not, I can't even go to the bathroom alone! I always have lanie or a cat following me. Relaxing in a warm bath?! HA! Yea right with what time? And if I did try while everyone was alseep Id end up waking Lanie up because its right there by her bedroom. I am so busy taking care of everyone and everything and updating blogs and facebook status's that I don't have time for myself. No naps for me. I'm not complaining in case your asking. This is venting, something I have learned one needs to do to help themselves emotionally. It seems to be good for the soul. How much it helps, i'm not sure. I need a miracle, a bright light at the end of the tunnel, something. Something I can grab ahold to and use as an anchor. Maybe I'm too anchored and should get a balloon to float up to the clouds instead because this whole CDH thing is just way too real. I went to WIC today and had to yet again tell Liam's story to the specialist nutritionist. I know his story needs to be told but I'm getting tired of being the one to tell it. I tear up and am overcome with a dark veil of sadness when I have to tell it. Sometimes I feel like I'm fighting with God. There are times when I just want to stare up at the sky and scream and holar at him and berate him. I keep being told that I need to let it all out, that I need to go ahead and throw a 2 year old fit. I can't do it. The most Ive ever been able to let loose were a few tears and then its like a switch gets turned off and I feel utterly emotionless like Im a brick wall. Song come on the radio and as soon as the damn it about to break that switch gets pulled. I walk through every day with a shadow of doubt, fear and uncertantly following me. I feel like a zombie or sleepwalker just waiting to be woken up. The just of it all is I am struggling. I'm struggling with my emotions. I can't passed what Liam has had to go through. I can't get passed watching the events that lead up to the loss another CDH baby or how quickly it can happen. Liam scares me to death. We found out at Valley Childrens that his left lung was stretched out during his repair surgery. The doctor have no idea what to expect with his lung. They have no clue if his lung will just suddenly give out one day. I can't stop fearing that it could happen any minute. I'm not at his bedside with the stethescope listening to his lungs even though I have two of them. I feel that if I did listen to his lungs I would imagine some noise that's not supposed to be there so I leave it to his doctors. I can't handle anything else on my plate right now. I know I shouldn't say that because everytime I do God throws something else at me. The next thing I know we'll get a phone call and the truck will have cought fire or something. I have no idea where to go from here. I am a lost soul, wondering around with no direction. I'm doing everything I can from my end. I don't think its too much to ask God to give me just alittle repreave after everything I've been through. When the sun comes up, it start all over again. A demanding household, phone calls to make, meds, feeds, diapers. I envy those with perfectly healthy babies. Those of you who are reading my blog, if you could only take one thing from it, let it be to not take the "small" things for grantid. Like your healthy child or your "easy" lives. I'm still trying to tell myself my life long motto of "things could be worse" but I find myself starting to loose faith in that. I don't take for grantid having Liam here with us versus the other outcome. I don't regret having him even though I was on birth control and was miserable pregnant. I laugh at that now. I seemed to be so damn miserable while pregnant but it's 500 times better than the way I'm feeling now. I don't know if this blog will ever really help anyone but I pray it does. Even if its in some small way.

First Thanksgiving Over

Liam's first Thanksgiving was successful. We were very pleased and so very thankful to have him with us at home. He slept most of the day away but it didn't matter to us. His presence was enough to over joy us. Today wasn't much different. Liam has been retching incresingly more everyday for a week and a half now. This morning at 6am I was up with him in the living room administering all 3 meds he has to help that and still they didn't work. He retched for a halfhour to an hour straight before it calmed down and he was able to fall back asleep. We cuddled on the couch together and slept until Justin and Lanie woke up. Then we retreated for some more snoozing. He retched through-out the day as well but theres only so much meds you can give. I have talked to another mom of a CDH baby who also had a fundoplication and her baby did the same thing after. Knowing that Liam isn't the only one out there with these problems helps my anxiety. When Liam isn't retching he's a happy little guy. He smiles alot and give you the shy looks. He also spends alot of time on the floor trying to roll around. It's so cute to watch. He looks like he's doing crunches. I am suprised about how active he is as far as trying to roll over and his stomach crunching because of him having a g-tube. It's really nice to see him so active. It's funny how I catch myself letting him cry for a few moments just so I can hear him. Or how I get him talking and just sit there for hours listening to him. I spend alot of time just watching him. Its so awesome the things he can do and what he has over come. I know it something I say alot but until or unless you have a child with an medical problem you just won't know how it feels to watch them overcome so much. God is always there watching over Liam and I know he has a few guardian angels helping him. Life will hopefully mellow out into something closer to "normalcy" for Liam and us around 1 year old. A few our of goals that we want to reach before or right at Liam's 1 year birthday are that we want him eating completly on his own, gaining weight and the g-tube gone. I know it's alot to accomplish but if we all work hard it could happen. It all depends on Liam though. Whats going to be a problem is his slow bowel motility. I fear it'll be a problem when he starts eating solids because if he's having trouble with liquid how is he going to handle something heavy and harder to digest. I know that on my blog I jump from one subject to another frequently and it can be hard to follow. Please understand that I am going through alot and that my brain has to work overtime to do everything that needs to be done for Liam and I cant just switch that off while I blog. As I blog I just type whatever is popping into my head without a thought. So bear with me as I try to work it all out. Thank you all for following Liam's updated.

Something to be Thankful For

There is only 1 day left until Thanksgiving. Liam's first Thanksgiving and first holiday spent at home with us. It is very exciting for me. I am so happy and so very thankful to be able to have him home with us on Thanksgiving. It is such a joy and momentous. We have been so very blessed with Liam's condition. Most CDH babies are in the hospital anywhere from 6 months to 3 years before they ever get to see their home for the first time. The fact that he survived everything he has to this point is a miracle and worthy of true thankfullness. Yes this year for Thanksgiving, Liam is my reason to be thankful. I pray everyday thanking God for Liam and the memories we re creating. When things start to feel overwhelming I have to remind myself that this isn't the worst things have ever been. The worst was when I had to sit at Liam's bedside just stairing at him dar after day while on ECMO and paralyzed. Everyday I feared would be the last. Everyday I prayed he would continue to get better. Things from back then are still a hazy blur. My emotions however are as strong as they were when I had first felt them. I know life is full of struggles and hardaches. Liam has done so much for me. He has strengthened my faith in God. I know it's a shaky platform but it's still there. I still want to yell and ask God why at times. I understand that God is the only one who truely knows what his plans are and we should never ask why. But when you are facing such tribulations the pressure and stress get to be too much and you become weak. I pray for strength because I know Liam isn't out of the woods. I know that his lungs are working really hard to breath and that his heart will always have stress because of being pushed over. I know that kids with CDH can be fine one minute and move on to earn their wings within hours. Theres no way to tell if his heart or lungs or other organs will continue to grow strong or suddenly stop working. All we can do is pray for th best. Everyday in November your supposed to list something your thankful for. All mine seem to be revolved around Liam. Today on FB I said I was thankful all my Christmas shopping was done and that most of it was wrapped. The reason behind this is because of Liam. I won't have to take him out into stores that are over packed with people, some sick, some carrying a virus. We avoided a detrimental setback to his health this way. If Liam does somehow catch something from a close friend or family member visiting who didn't even know they were carriers of a virus and ends up in the hospital for Christmas then we're ready. Liam and Lanie will still have a good Christmas even though we're at the hospital. Justin and I have even gotten our own Christmas gifts. We have both been in need of a few things and decided that for Christmas we would get those things we needed. Shoes, clothes, things we haven't been able to afford. I feel that this is a great reason to be thankful. What will make this a great Christmas is having Liam with us. Our family is finnaly complete. With everything we have been through since Liam's birth I feel that it doesn't matter where we spend the holidays as long as we are together. Ofcourse I would rather be at home then stuck in a hospital. So for now, I'll continue to administer Liam's meds, play with him, love on him, and make memories with him. And, God willing have the strength to handle anything that comes in the future.

Fears and Tears

Every day Liam is growing and doing more. Every day I sit back and I watch him. I watch him smile. I watch him sleep. I watch him breathe. Liam means the world to me. Every day I fight so hard to not "favor" him over my daughter. Every day I fear that something will happen. I feel like I'm waiting, just sitting in purgatory. I find myself suddenly sad or scared for absolutly no reason. I feel like something is about to happen but have no clue as to what that could possibly be. I'm afraid we'll end up stuck in a hospital because he cought a cold or that his g-tube will get pulled out. I'm even scared he will stop breathing on me or that his heart will just stop. I go to bed every night praying to God that when I wake up Liam will still be there in the bassinet breathing and sleeping or smiling back at me. The greatest thing is to wake up and see him smile at me first thing in the morning. That happiness never last long before the fear of what the day will bring sets in. I'm always scared that I'll be at home alone with the kids and have an emergency with Liam and the car won't start and my phone stops working. I don't know if it's just me. I don't read much about how the parent's feel in raising a cherub and feel that it's important to share my feelings in hopes that it will help someone else out there. It's a scary situation. I get asked all the time how I deal with it all, how I'm ok with it all. My response is always the same "because I have to be". I don't have a choice. I have to be strong. I have to be able to deal with my son's health issues. I have to be ok with feeding him through tubes and administering meds. I have to be ok with the fact that my bed room alot like a hospital room. And I have to be ok with answering questions. When I go out with Liam, I sometimes pretend he is normal. If he's not feeding then his gtube is hidden by clothing. People comment on how cute he is and ask's how old. I don't tell them his story unless they specifically ask something. I find that even after 4 months that it's still hard for me to explain what happened with Liam and all we've been through. Sometimes I just give the short answer, he has alot of health issues. I'm not ashamed by him. I love my son and can't really imagine him being any different. I feel that he wouldn't be the same if he hadn't gone through all this. I think that him having CDH just maked me love him more. It feels like my heart could expload from the love I have for my son. That doesn't change my fears. I swear half the time I'm walking around with my heart in my stomach. There's nothing I can do to change his health and I think that's a huge problem for me. When Liam was conceived we weren't trying to have another baby. I was actually on the pill. I did everything right. Took the pill at the same time every day. Used other protection while on anti-biotics for a month after I stopped them everytime. I guess God just decided it was time. I couldn't control conception, then I couldn't control the pain I was in the last few months of my pregnancy. I had no control over labor and delivery. When it came to Liam I had no control what so ever. Not even when it to changing his diapers while at the hospital. Liam was always a suprise, every step of the way. Because of that I keep waiting for more suprises to pop up. He went from being so far behind and all the doctors saying he was going to have lot of health problems to being right on time with his age. In fact he's even ahead on some things. My fear steams from all that and the fact that I have absolutly no idea what the future holds for Liam or for us. He has impacted our lives in so many ways. I'm working hard to overcome my fears, to work through the pain and anger I feel for his condition. I developed PTSD from all this and it's been a roller coaster of emotions. It's harder than I ever thought it would be to get through this. I was on anti-depressants before Liam and now that too has escaladed. Just when I think I have a handle on everything I find out I don't. I'm still waiting for that big breakdown even though I've been fighting against it. I know it should help me to just let it all out and stop bottleing it up but I haven't been able to let myself loose control. I feel like I'll be a failure or weak if I do. All I can do is be a nurse for Liam as well as him mom and do my best. I pray every night for him to continue to improve. I pray one day soon they will not only have answers to CDH but a way to prevent it. I want this to end. I read alot of blogs and updates about CDH babies and everytime I read about one that earned their wings I can't help but cry alittle and hold Liam close. I know I don't know them or their families but I still feel connected to them. Please send a prayer up that we get some answers soon.

11/08/2011

We’ve officially been home 4 days from the hospital. Liam has been doing great. He sleeps all night long, doesn’t even wake up for diaper changes. He sleeps so hard he doesn’t even wake up when I’m moving him around. He’s an early bird and all smiles when he wakes up. He’s content with lying in his bassinet talking and staring at his toys. I love waking up to his sweet voice and super cute smile. He really lightens up my mornings. It’s hard to be grumpy when you see such a bright smile every morning. Liam hasn’t had any problems with his feeds. In fact when I took him to the doctor’s yesterday he weighed in at 10 lbs 4 oz. We celebrated with a cake. Finally my little man is out of newborn clothes. He is just 1 week shy of being 4 months old and finally wearing 0-3’s. It was an exciting day for us. I actually took in all Liam’s newborn clothes to Smarty Pants kids used clothing in Visalia and traded them all in for 0-3’s. They had such cute stuff. Even picked up a few things for my daughter. Not only were the things priced very well, but the trade in credit was awesome too. And now with Flu and RSV season upon us, Liam can’t go out into public. DH actually drove me to all the places I had to go today and stayed in the car with the kids. It was very sweet of him. What’s really amazing was the fact that he didn’t complain too much either. I’m loving being home. I love that tomarow I have absolutely no where I have to go and get to stay at home and cuddle with my two kids. I love it. I am struggling with the fact that I am back to being a stay at home mom when I had only gotten back to work last year. I worked really hard to get through tax school and then even harder at work while pregnant. I thought I had it all figured out. I’d give birth to Liam and he would be 3 months old before I had to do a few meetings then 6 months old before I had to go back. Now I don’t even have the opportunity to go back to work. I have no choice but to be a stay at home mom with my kids because of Liam’s condition. I’m not mad about it, just trying to re-adjust my way of thinking again. Besides this is the fun age for me…..as long as we don’t have anymore hospital stays anyway. Thank you all for your prayers and your support. I am continuing to ask that you keep Liam in your prayers. One little cold started our last adventure at the hospital. If he gets RSV with his Chronic Lung Disease it’ll be a very hard haul for him. One his little body isn’t strong enough for yet.

GREAT NEWS!

I'm excited to announce that yesterday Liam was released from Childrens Hospital and is now home. Home where he belong. We left with the truck full of luggage, medicine and toys. When we went in Liam was on 4 different perscription's. We tweaked some, got rid of some and added new ones. Now he has 8 meds to take daily. I am a nurse, atleast to my son. I have learned so much more about Liam on this last hospital stay than on any others. Probably because we were at Childrens. They looked at the whole picture, not just part of the picture. Once they realized that we wanted to be involved in every step of the way they kept us informed. We all made decisions together and choose the best options for Liam. This last stay diagnosed Liam with reflux and chronic lung disease. He had a Gtube placed and a Nessen Fundoplication for his reflux. If you hadn't noticed the funny little tadbit there, I'll point it out. Liam had a Nessen........you know Liam Nessen LMAO. How funny is that?! Anyway. We are all very happy to be home. We got to sleep in out own comfy beds. Now we have to get a new routine going. Liam's med sched means meds every 3 hours as well as feedings. Liam is currently not taking anything by mouth. It's something that we're working on and will also need therapy for. Lanie is happy to see all her toys and her bed. The cats missed us like crazy and have been following us around and curling up next to us. It's awesome to be home! We have alot of work ahead of us, dusting, vacuming, mopping. Its amazing how dirty a house can get when no one is even in it. Stupid water cooler! Ill keep posting as often as I can but for now please visit Liam's website and pass it one. We have so many appointments ahead of us its not even funny. All within a months time.

Liams Update

We've been at childrens hospital for 11 days now and will be there for awhile longer. Sorry for no updates the hospital internet service will not allow me to access blogger for some reason. For all his current updates please visit his web page http://www.wix.com/cherubliam/cdhfund

Day 8 UCSF Trip 2

Liam only gained 20 grams over night but if he has weight gain at tomarrows weigh then they're going to discharge him. Today was also the first day that they actually used the term "failure to thrive" on Liam. It was a very sad moment for me. I had been killing myself to get him to feed what he was supposed to feed and it wasn't working. I pray the NGtube will change that. He's already a different baby today. He spent probably 95-98% of the day awake, happy, smiling and playing. At home he was sleeping 95% of the day and didnt have the energy to do anything. It's deffinately a step in the right direction. We're doing continuos feeds from 8pm to 4am. We started them last night. He did really well, no throwing up, no upset stomach. It's been great. He even flirted with he nurses today and was able to withstand alot of being played with. It's the start of a new for him and us. Here's praying for our discharge tomarrow, getting our family back together and Liam's progress.

Day 7 UCSF Trip 2

They decided no surgery even though his right side diaphragm is floppy and barely working enough for Liam to breathe. I'm upset that they said they wanted to wait until his respitory issues get worse. My view is to fix it while he's healthy and strong, not wait until he's weak. Liam is still throwing up so we had to come up with another feeding plan. Feeding him through the tube using gravity isnt doing the job. The new plan is to continue using gravity during the day but a night time we're doing continuos feeds, 75ml over a three hour span and it leads into the next feed. We're going to do this for 8 hours straight then no feeds for atleast an hour then start the bottle again. I really pray it works. Barb with Pedi Surg was also able to get his prescription filled for Ranitidine. It turned out to be something simple. The morons at the Rite Aide in our small town just had to look at his insurance to see who it was through to realize they didn't need a TAR to fill it. If it's not one thing it's another. I'm glad that's one hurdle I won't have to deal with when I get home. Now we're just waiting for Liam to put on weight everyday for a few days before we can go home. God willing we will be home friday.

Day 6 UCSF Trip 2

Apparently the real problem isn't that Liam's diaphragm is high on the right side. The realy problem come to find out is that the right side is loose and floppy. It's moving enough to make the lungs expand but not enough to be normal. They're just going to leave it the way it is unless he starts having respitory issues. Hopefully he won't start having those problems. Yesterday morning Liam started throwing up a yellow green. We thought maybe the NGtube was in the wrong spot causing it but the x-ray showed its where it's supposed to be. We decided to start the Reglan again and see if that helps. He's being monitored to see if the tremors start up again. We're all hoping they don't, but theres no better place for him to be while we try this. I'm so irritated with people telling me how to take care of my CDH baby or what to expect by those who haven't had experience with one. I've had to tell the nurses how to handle him and what to expect. I have to remind the nurses every night that he is not to be taken out of him room because they love to grab up babies and walk around the hallways with them to show them off. We've been so careful with him at home not letting anyone around that has even been exposed to anything that I'll be damned if I let him get sick at the hospital. The quality care of the 6th floor is just not there. They drop the ball on everything. If I hadn't been there not only would my kid not get his meds or his feedings on time, he'd cry until he passed out and sit in a dirty diaper all day. According to Dr Minioti, when Liam can gain weight for two days without losing then we can go home. Meanwhile we have yet to have the people with the pump come up to show us how to use it so we can take it home just in case or hear that everything has been arranged for home delivery on his NGtube supplies.

Day 5 UCSF Trip 2

It's not starting out to be a good morning. I walk in at 7:14 this morning to find out Liam threw up yellow-green stuff. At 7:30 whle I was holding him he threw up yellow-green again. It's not a good sign when CDH babies do this. It could mean re-herniation or a bowl obstruction. It's one of the things they told us to watch for and take him immediately to the ER for x-rays when we got discharged the first time. On top of this, I had another really crappy night. I couldn't hardly sleep and when I did it was bad dreams that something bad was happening to Liam. Ofcourse we sometimes think the worst in situations like this. It's just what stress does to you. Now I'm sitting here waiting for the doctors and surgeons to come talk to me and let me know what todays plan is. I am already ready for today to be over. I wish I could just curl up with my son and cuddle. I hate seeing him go through this. What's truely amazing is that through out all of this and even a few minutes after he threw up, he's smiling and playing. It's just an absolute miracle. Liam is such a strong little guy. I'm not sure if I could smile and laugh if all this was happening to me.

Day 4 UCSF Trip 2

We started out the morning switching not only rooms but floors. We got put into a room with an 8year old who him and his dad were sick. They had that deep wet cough that you know means their sick. Justin asked them if they were taking any medicine and the dad said no. Finnaly after the started coughing every two minutes Justin went and talked to the nurses and had us moved away from them. We just can't take the chance at him getting sick. We've been so careful to not let strangers near him or anyone even family who are even sneezing near him. We have family that has yet to see him because we have to limit the number of people that come in contact to him. I was very upset that they didn't take that into consideration when they placed us in that room. On top of the coughing the little boy was complaining of a stomach ache. Those are all signs of being sick. Within 15 minutes of Justin talking to the nurses we were moved. The surgeons came into to talk to us and they were worried that they had to rush Liam's test thinking we were in a hotel and only had a few days. We let them know we were in the Ronald McDonald House and to not rush him out no matter what. We want to make sure that when we get him home this time we get to stay and not have to be re-admitted for because they missed something. Later the teaching continued on how to place an NGtube. Ofcourse I got volunteered to go first since I'll be the one doing it at home. We practiced on our nurses hand first that way we wouldn't be as freaked out. It took me 4 times to get his NGtube placed because as soon as I got it in he would cough it up and it would come out through his mouth. Finnaly on the 4th try it stayed in place. Then we checked placement and secured it to his face. I made a heart out of the protectant material. I thought it would be neat to for the first one we put in to have a neat shape. Now that I've done a shape, Id like to do more. They look alot better than just a strip on his face. The day flew by with all the learning we were doing, but my head couldn't hit that pillow fast enough.

Day 2 Trip 2 UCSF

It's been one of those days where your sooo glad it's over but been bad enough that it leaves you with the feeling that tomarrow will be worse. Trust me, I'm prepared. We started out the day with an IV. They said he was dehydrated and needed IV fluids. It took 3 nurses and 6 pricks to get the IV in him. He cried, I teared up, Justin stared out the window. They finnaly got it and we were all happy. Dr. Lee came in to talk to us and he didn't want to make a plan beyond getting Liam re-hydrated and bulked up. It does seem that everyone is in agreement that the surgery needs to be done while were here instead of waiting until he gets worse. They're going to start testing on monday or tuesday then make the final decision. Around 5pm Liam started throwing the most horrible fit he has ever had. His cries were those of pain. When swaddling, the pacifier and a bottle didn't work, the nurse started going over everything. The IV alarm kept going off so she kept checking his IV. Come to find out it was kinked under the tape in his hand causing pain. She was able to fix it and therefor stop Liam's fit. While he was throwing a fit he he PVCed. We don't know if it was a true PVC or not because he was throwing a fit so it something we are watching. He also spent the whole day desatting and having a high respetory rate. The only time it wasn't high was when he had fallen into a deep sleep and then his respitory rate became very low, 11's and 13's. Once he woke up it returned to normal. Around 6pm he threw up almost a whole 2oz . My reasoning for that is that she fed him an entire hour early and it was right after his huge fit. I felt so bad. One good thing did come out of that and it was the picture we took of him during his bath. I just don't know what else to say. Alot has happened today and alot that I havn't even written about. As parents were worried and extremely drained. Not only does it seem Liam is doing worse since we've been here but we also don't have our daughter with us. We're on a holding pattern until monday and monday won't come fast enough.

Day 1 at UCSF 2nd trip

First day re-admitted at UCSF and it's been a long day. We got up at 5am to get up here by noon. Then we waited 4 hours for a room. Finnaly they put him on the 7th floor. He's the youngest patient there. Once we got in a room things moved really quickly. The NGtube was put in. Liam was not happy about that. He spent 3 hours upset and crying off and on. He's already had an xray of his diaphram and i've already talked to the surgeon. Liam will probably have surgery monday or sometime after monday. Thats the plan. We had to leave around 7pm to check into the Ronald McDonald house. When I called to check in the nurse informed me that they had moved him to the open bay where they work so that he can be heard and watched closely. I know that 5am came too early this morning and now I am extremely exhausted. I just need to get some sleep so I can get back up there first thing in the morning.

Off to UCSF...Again

Today's been pretty hectic. My phone has been ringing off the hook. The social worker, pediatric surgical depertment, billing department and nutritionist have all called me today from UCSF. All giving me info or wanting info for Liam's admittance. Those are just the incomming calls. I don't know how I'm even functioning with the little sleep I've gotten the last week. Colicy babies are just not good for sleep especially when they like to be up from 3am to 7am and waking up all night long. I'm crabby and grumpy. Let's just say you don't want to get in my way right now. It's probably a good thing that I'm not having to fight with workers who don't want to work because they would have their heads ripped off. After Liam gets his NGtube in I'll be able to get more sleep. He won't have to be woken up to eat so therefor it won't take as long for feedings. He needs his sleep more than I do and his callories so he can grow.

Back to UCSF

We got the call this morning from the Pediatric Surgical team at UCSF. They want Liam there on thursday. We're justing waiting on CCS and medical to approve his stay there and for housing to come through. Please pray that this all gets situated by tomarrow so that we can get this segment of our CDH journey started. Liam hasn't been eating what he's supposed to and it's been worse the last two days so its imperative we get the GNTube soon as possible. Once we're there and the tube is in place they're wanting to do an ultrasound to insure that his right side diaphragm is still moving properly. This will let us know if he needs the surgery or not. It'll also change how long we're going to be stuck in San Fransisco. It's deffinately been a journey for us. It's been hard on my too sit there at my sons side and watch him going through all he's been through. Thank God he's a strong guy and a fighter.

Colic

We've had one formula change too many. Friday we started the fourth formula within a one month period. As of yesterday Liam has colic. I spent all afternoon yesterday trying to keep him calm. The only time he slept was when he was lying across my lap on his belly or with his stomach pressed against mine. Last night we rotated between the bassinet, bouncer, swing, and my arms. I am a very tired mommy this morning. He's been sp crabby. He doesn't want to eat or suck on his pacifier and is only calm in my arms. Hopefully, with the help of the gasdrops, this stage won't last long. Atleast I know what to expect since I have been down the long dark road of colic before. We're still waiting for the call from UCSF and expect we'll get the call on monday or tuesday. I'm sure that it'll be a last minute thing like telling us we have to be there the next day. Today we printed out business cards and flyers to give out. And we're selling lolipops at a few establishments for Liams Fund and giving out flyers and cards. I don't know how well it'll work to get funds but its worth a try. Jewelry is still for sale at Liams FB page. I thank God everyday for my son and even though were going through what feels like hell because of his condition, I wouldn't trade him for the world. God has a reason for giving me a son with Congenital Diaphragmatic Hernia and I won't question it. Everyday is a blessing. I watch my son and realize how much we take for granite. The things that just seem to simple, like breathing. These kids with CDH fight to breathe while we think nothing of it. CDH babies are little miracles and every one of them is making a difference is someones life.