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.