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.

Not Good News/Fund Raisers

Liam had his first CDH clinic last thursday. We didn't get good news. They want to re-admit him to UCSF this comming week for an NGtube and to do another ultrasound of his high right side diaphragm. It is very possible that he will have to the another surgery to fix this problem. While we're sitting here waiting for UCSF to call with the day when we go back Im doing everything to raise funds. Ive made charms, bracelets, and necklaces that im selling, were selling lolipops, posting flyers and whatever we can do. Please check out Liams FB page: Liam Michael Bryant for details on the jewelry. We also have paypal donations set up on the right side of this blog if your willing to help.

Things Could Be Worse

We seem to be on a long streak of bad luck. My husband gets laid off, unemployment runs out, my son was born with CDH and almost died and our truck is broken. The truck has been in the shop three times in the month i've been home from UCSF and it's still not fixed. It has to go back in on monday. So this entire time my family hasn't been able to go and do anything as a family and we've had to depend on others to take us to our sons doctors appointments. What little bit we had saved up is now gone and we're at wits end. We're not sure what to do now. All we know is that we have to have a vehicle that holds the three of us and we have too much invested in our current truck to sell it. We have to go back to UCSF on the 22nd for the peaditric sergical clinic for our son and have to borrow a car to do so. I'm just stressed out. I'm praying that soon a streak of good luck will cross our path. I have to keep telling myself thing could be worse. It's been my motto for most of my life. I thank God that atleast I have my family together and my son is doing good.

NICU Nurse Appriciation Day/Liam turns 2 months

Today is NICU Nurse Appriciation Day and I would like to thank the Nurses at UCSF for playing such a major part in saving my sons life. There are two Nurse's in particular that I would like to thank, Liam's primaries Sue and Cindy. Because of the special bond these two developed with little Liam they were able to know his needs without a second guess. These two nurses were special to my son. They were the only two that he would mess with. I find myself saying things to him that his primaries would say to him such as "There's no crying in baseball" and "oh life's not that bad". Thanks to these very special nurses we were able to bring Liam home, we're able to see him smile and make noises. Because of them we're able to be a family. They will always hold a special place in my heart and they will always be part of our extended family. Nurses are the ones that take care of the day to day care. They are the ones that administer meds and make sure the babies are comfortable and not in pain. They make sure the babies are fed and changed and that they get what they need. They are also the ones that lend a voice to these babies. On many occasions Sue and Cindy lent their voices to Liam and because of them things were taken care of. Because of them Liam was a person and not a case file. Thank you UCSF NICU Nurses for everything you do. You work hard day in and day out and even though it seems your work goes unappriciated it's not. Because of all your great work my son is a CDH survivor and is now 3 months old. Thank you.

09/05/11 Another Cherub Lost

While up at UCSF with Liam we met several families with CDH babies. There were a total of four of us there at one point. Last night the second one passed away. The baby was three months old today and fought hard everyday. Being up in the hospital with three other babies in the room with you, you meet the babies and get attached to them. Then you meet the families and grow fast friendships. Especially when that baby has the same condition as your own child. You watch as each baby has its ups and its downs and you share in the joy and pain of those families. Liam at one point or another was in the same room as both the CDH babies that were lost. It’s a sad coincidence. It’s hard to know exactly what to say to the families that lost their cherub when ours is doing so well. I know it must be devastating not only loosing your own child but to then watch as another child with the same condition as yours is flourishing. They must have things running through their minds like “why did it have to be mine and not theirs?”. At least that’s what I imagine going through their minds. Since I have only witnessed the loss of someone elses child I can only really tell you how I felt watching this. The day little Maddie passed I saw the caos. I hadn’t known at the time what was going on. My family had become very attached to Maddie and her family. We had been there in the same room and had seen her ups and her downs and prayed for her every night. We were there when her parent’s finnaly got to hold her for the first time. I cried. I had been overwhelmed with joy for them. We knew that very day she passed that something was wrong. We could see it in her parents eyes. We never thought for one minute that she wasn’t going to make it so it was a complete shock when we found out. I was devastated. The whole Ronald McDonald house gathered and we prayed. Later we got word that she had passed as we were praying. When we got to see her parents and saw the pain on their faces my heart broke for them. Honestly I still hurt for them. Then today we found out little Shane passed last night. We knew he was having trouble but being the optimist I am refused to think he wouldn’t make it. When we got word of his passing it was like the break in my heart just broke more. I just can’t begin to imagine how it feels to be in their shoes. I watch as Liam achieves mile stone after mile stone and can’t help but think about the ones that were lost. I pray for them and their families as well as every CDH child out there. I pray one day we’ll have an answer and a way to prevent CDH in the future. I know enrolling Liam in the two research studies about CDH while at UCSF was the right thing. I pray more families out there will be willing to do the same so that one day we can prevent this from happening to others. I know God has his reason and we’re not supposed to question him. So I pray for the strength to accept his will and the courage to move on even when the world seems dark.

A Whole week Home

Liam has officially been home a week now. It's doesn't feel like the week should be over yet even though we had alot going on. I've been busy with doctor appointments, nurses visits, looking into programs for Liam. It's just been tiring. Liam is doing really good. We switched him over to Neosure formula on monday and he seems to do just fine with it. I am noticing that his little face is starting to get chubby and that makes me very happy. He's almost two months old and still in newborn size clothes. Progress is slowing with him putting on that needed weight but atleast he is still gaining. Wensday he has another doctors appointment so we will know for sure then if the formula is working. We're still having to wake him up every 2 to 4 hours for feedings throughout the night. Liam is starting to get alot more personality. He coo's and grunts and stays awake alot more now. It's fun to watch him watch the world. We feel so blessed that he has come so far.

Liam Michael Bryant CDH Fund

All money donated will be used to get Liam back and forth to UCSF Childrens hospital for his CDH check ups and clinics. We thank you for every donation. Click here to donate via PayPal

49 Days Old

I thought that things would be easier to deal with when we got our little CDH cherub home. In a way they are but in some ways its harder. There's the obvious things that I miss that made things easier like the stat monitors and the 24 hour care from a staff of doctors and nurses. Now that we're home I'm becoming overwhelmed with the fact that he could still make a turn for the worse and I only have a few ways of knowing if that's happening. Liam is having some feeding issues. He won't eat a full bottle feeding so we had to switch his formula to Neosure so his take in volume is less but his callories are more. We can't risk him loosing weight because once that happens it'll start a downward spiral. Everything was going great until yesterday when he got constipated and really gassy. The in home nurse happened to call when I was going to call the doctor and she came out to see him. Between her and the doctor we have a plan and I'm not so paranoid that it could be something worse than it is. Thank God for the resources he has given me to help take care of Liam because without the great doctors, nurses and programs I would be completly lost. Liam is 49 days old and he's still wearing newborn diapers and clothes and the swollow him whole. He weights barely over 7lbs. He truely is a miracle baby. Lanie has been doing great transitioning from being the only child. She's just afraid that when she waked up in the mornings I'm not going to be here anymore that I'll be back up at the hospital in San Francisco. I think our ordeal has cause her night terrors and I feel horrible about it. All I can do is be here for her to reinforce my telling her that I'm not going anywhere. My Post Tramatic Stress from this situation is pretty bad. I know I need to just break down and cry to let it all out because I have yet to have a break down since we found out Liam was sick. It never seems to be the right time to just let it all out. I know it's comming. I'm so thankful to have my two kids together at home. Life may not be perfect but it doesn't get much better than this. Cudled on the couch watching movies. All the doctors, nurses, friends and family keep telling that I'm doing everything right. It's hard to believe when you have a sick kid. Even though I didn't cause his condition it's still hard to believe. I think thats what aggrivates me. I did everything I was supposed to during my pregnancy. I listened to the doctors, took my vitamins. The only thing I did was drink some caffine and it was a preapproved amount. Then you have people out there who do everthing your not supposed to while pregnant like drink, smoke, do drugs and their kids are born healthy. A childs life isn't one to gamble with and I have no respect for those who do gamble with childrens lives. The naighbor around the corner came over the other day and asked for vicodin because she hurt her back. We've never met them before mind you. Come to find out she's a few weeks pregnant. I was mad when I found out. I just pray that soon we'll have answers as to why CDH happens and if it can be prevented.